https://www.blogtalkradio.com/powerful-patientDo you feel helpless in the face of "the system?" This show is to help you learn how to take control and steer your way to health. Hear how others have met these challenges and overcome them. Learn how you can do so too. This program is a forum to share your experiences, ask your questions, and learn how to create and manage your health care team. Make the healthcare system work for you! enCopyright Joyce Graff (C/O Blogtalkradio)Wed, 18 Mar 2020 14:30:00 GMTWed, 18 Mar 2020 14:00:00 GMTHealthBlogTalkRadio Feed v2.0https://dasg7xwmldix6.cloudfront.net/hostpics/71ceb5f5-fdad-43a4-a22a-14e73769a045_robinjoyce1400.jpghttps://www.blogtalkradio.com/powerful-patientDo you feel helpless in the face of "the system?" This show is to help you learn how to take control and steer your way to health. Hear how others have met these challenges and overcome them. Learn how you can do so too. This program is a forum to share your experiences, ask your questions, and learn how to create and manage your health care team. Make the healthcare system work for you! feeds@blogtalkradio.comBlogTalkRadio.comhealth,cancer,healthcare,kidney cancer,caregiving,diagnosis,nutrition,vhl,von hippel-lindau,depressionPowerful PatientnoDo you feel helpless in the face of "the system?" This show is to help you learn how to take control and steer your way to health. Hear how others haveepisodichttps://www.blogtalkradio.com/powerful-patient/2020/03/18/what-is-an-autoimmune-disease-what-is-sjogrens-syndromeHealthhttps://www.blogtalkradio.com/powerful-patient/2020/03/18/what-is-an-autoimmune-disease-what-is-sjogrens-syndrome/#commentshttp://www.blogtalkradio.com/powerful-patient/2020/03/18/what-is-an-autoimmune-disease-what-is-sjogrens-syndromeWed, 18 Mar 2020 14:00:00 GMTWhat is an autoimmune disease? What is Sjogren's syndrome?Our body's immune system is a powerful defense against bacteria and viruses that can cause disease.  Sometimes, though, our bodies' own defense system can attack our own cells.  This is called an "autoimmune" condition. Sjogren's system is one of those autoimmune diseases.  Robin and Joyce speak with Steven Taylor, President & Chief Executive Officer of the Sjogren's Syndrome Foundation, to learn about this syndrome, and how to determine whether you are affected. https://www.sjogrens.org/     00:31:00Powerful Patientnoautoimmune,autoimmune disease,Sjogrens Syndrome,dry eye,lymphomaWhy does your body's own defense system sometimes attack your own cells?e7a32e5a-2335-4c00-8583-8f5eac54f83d1033fullhttps://www.blogtalkradio.com/powerful-patient/2019/04/11/we-learn-about-a-cancer-biology-and-translational-oncogenomics-laboratory-1Healthhttps://www.blogtalkradio.com/powerful-patient/2019/04/11/we-learn-about-a-cancer-biology-and-translational-oncogenomics-laboratory-1/#commentshttp://www.blogtalkradio.com/powerful-patient/2019/04/11/we-learn-about-a-cancer-biology-and-translational-oncogenomics-laboratory-1Thu, 11 Apr 2019 20:00:00 GMTWe Learn About: a Cancer Biology and Translational Oncogenomics LaboratoryWe are on the brink of incredible discoveries states Al Copland.  I used to not believe that you could cure cancers, but I do now as he talks of today's cancer research programs. Mike, Joyce, and Robin talk with John A. Copland III, Ph.D., who leads the Cancer Biology and Translational Laboratory at Mayo Clinic/Jacksonville about basic and translational cancer research. Dr. Copland has also been instrumental in developing a program on the Mayo campus for local high school juniors and seniors interested in biomedical science to interact with the staff and directors of various Discovery and Translational labs on the campus. https://www.mayo.edu/research/faculty/copland-john-a-iii-ph-d/bio-00028205 https://www.mayo.edu/research/labs/cancer-biology-translational-oncogenomics https://www.mayo.edu/research/centers-programs/spark-research-mentorship-program   00:36:00Powerful Patientnocancer survivor,Cancer,Cancer Research,Mayo Clinic,renal cancerA conversation with John A. Copland III, Ph.D. of the Mayo Clinic, Jacksonville85eebc65-cbe3-4165-9520-02fabaa4b2c71032fullhttps://www.blogtalkradio.com/powerful-patient/2019/04/01/a-talk-with-anna-landre-on-lack-of-access-and-care-for-those-with-disabiliesHealthhttps://www.blogtalkradio.com/powerful-patient/2019/04/01/a-talk-with-anna-landre-on-lack-of-access-and-care-for-those-with-disabilies/#commentshttp://www.blogtalkradio.com/powerful-patient/2019/04/01/a-talk-with-anna-landre-on-lack-of-access-and-care-for-those-with-disabiliesMon, 01 Apr 2019 18:00:00 GMTA Talk With Anna Landre on lack of access and care for those with disabiliesToday we talk with Anna Landre, a student at Georgetown University who declares in a February 2019 article in The Hoya “The United States’ disability social safety net is profoundly broken. Although Medicaid was created in 1965 partly to provide disabled Americans with health care, today’s beneficiaries face constant cuts in services and discriminatory regulations that harm their quality of life.” Anna, the valedictorian of her high school graduating class is described by her principal as “…one of the most intelligent and gifted students to graduate from the high school… she never lets her physical limitations impede her” has served as an advocate for disability rights and inclusion since an early age. She has endured humiliation in court from a team of corporate insurance company lawyers as she fought for her need for aide services. Anna realizes that struggles of this type will likely be an ongoing situation as she and others with disabilities are forced to fight for access and adequate care. 00:29:00Powerful Patientnodisability,disability news,handicapped,wheelchair,lack of accessThe US disability social safety is broken says Anna Landry, a student at Georgetown Univ.bee60858-7967-4de0-9da1-b1a4d45b273b1030fullhttps://www.blogtalkradio.com/powerful-patient/2019/03/18/kidney-cancer-patient-experience-in-north-carolinaHealthhttps://www.blogtalkradio.com/powerful-patient/2019/03/18/kidney-cancer-patient-experience-in-north-carolina/#commentshttp://www.blogtalkradio.com/powerful-patient/2019/03/18/kidney-cancer-patient-experience-in-north-carolinaMon, 18 Mar 2019 18:00:00 GMTKidney Cancer patient experience in North CarolinaIn this Powerful Patient conversation our team talks to Ann and Chris, two female survivors of Renal Cell Carcinoma (Kidney Cancer). Unlike most of our guests they are not engaged with cancer advocacy on a national or regional scale. They are very similar to most persons who receive and then strive to live with a diagnosis of cancer. In this conversation we will look at their efforts to deal with their medical situation and attempt to maintain a sense of normalcy in their everyday life.  Chris lives on the North Carolina Coast, was diagnosed almost three years ago, and in addition to surgery is on her fourth different type of treatment for metastatic disease. She is thankful for the support of her family and friends in this journey and the simple things in life have become more important to her since her diagnosis. Her doctor is a specialist in kidney cancer and is located over three hours from her home. She receives a lot of information from other persons dealing with this cancer through an online moderated support group. Ann was diagnosed in July 2014, was treated with two different therapies as well as surgery and has been under observation only (watchful waiting) for almost two years. Like Chris, Ann is being cared for by a specialist in kidney cancer some 90 minutes from her home. Ann regularly participates in an in-person monthly support group at the cancer center where her doctor is located and visits an online moderated support group on a regular basis. Ann participates in the annual 24 Hours of Booty https://www.24foundation.org/charlotte/ her “Team Fannies For Annie” raises almost $10,000 per year for Levine Cancer Institute, Charlotte, NC. 00:30:00Powerful Patientnokidney cancer,renal cell carcinoma,immunotherapy,targeted therapyConversation with Ann and Chris about their experiencese9ef89ae-1483-4dd3-95a1-75593d719a891029fullhttps://www.blogtalkradio.com/powerful-patient/2019/03/14/myeloma-patient-rockstar-cindy-chmielewskiHealthhttps://www.blogtalkradio.com/powerful-patient/2019/03/14/myeloma-patient-rockstar-cindy-chmielewski/#commentshttp://www.blogtalkradio.com/powerful-patient/2019/03/14/myeloma-patient-rockstar-cindy-chmielewskiThu, 14 Mar 2019 19:00:00 GMTMyeloma Patient Rockstar: Cindy ChmielewskiOur Guest for today was diagnosed with Multiple Myeloma in 2008. An article about her posted by the American Association for Cancer Research describes her this way: Cindy Chmielewski is a social media rock star in myeloma patient circles. https://www.aacrfoundation.org/Survivors/Pages/cindy-chmielewski-multiple-myeloma.aspx Using the Twitter handle @MyelomaTeacher the retired teacher and patient advocate shares information, hope, and encouragement about treating and dealing with this cancer which affects the plasma cells and will result in over 32,000 new cases and almost 13,000 deaths in 2019 according to the American Cancer Society. Since establishing her Twitter account a decade ago Cindy has posted over 40K tweets, received almost 8,000 likes, and has a following of more than 6,600. In addition to her activities on Twitter she administers the Philadelphia Multiple Myleoma Networking Group on FaceBook that updates information on political action, clinical trials, and educational opportunities relevant to this very uncommon cancer which carries a lifetime risk of 1 in 132 persons (0.76%) having the disease.   00:30:00Powerful Patientnomultiple myeloma,patient advocacy,Survivor,Cancer,ResearchWe learn some interesting things about Myeloma95c4babc-2f08-4bc9-ae69-8238f7c3afd91028fullhttps://www.blogtalkradio.com/powerful-patient/2019/02/28/rebecca-esparza-campaigns-for-ovarian-cancerHealthhttps://www.blogtalkradio.com/powerful-patient/2019/02/28/rebecca-esparza-campaigns-for-ovarian-cancer/#commentshttp://www.blogtalkradio.com/powerful-patient/2019/02/28/rebecca-esparza-campaigns-for-ovarian-cancerThu, 28 Feb 2019 20:00:00 GMTRebecca Esparza campaigns for Ovarian CancerWe speak with Rebecca Esparza, a passionate advocate for research into Ovarian Cancer.  “It was August of 2001 [at age 30] when I awoke one evening with a stabbing pain in my side that was so serious, I headed straight to the emergency room… I left with a diagnosis of “depression” and a bottle of painkillers… "Something inside me – a gut feeling I can’t explain – told me to follow up with my gynecologist. A sonogram showed a mass and his educated guess seemed absurd to me. 'I think you may have ovarian cancer,' he said, matter-of-factly. I could not believe him -- 30-year-old healthy women do not get ovarian cancer!" It was ovarian cancer, and surgery and treatment followed.  "Scared and feeling helpless, I started my chemotherapy treatments on January 9, 2002. "Just after Valentine’s Day, my doctor informed me the cancer had spread to the liver and lining of my stomach. I was now considered stage IV, also known as 'end stage' disease. My social worker told me to put my affairs in order. But I wasn’t about to go down without a fight.” Today, Rebecca is still cancer free, but has many side effects from chemotherapy and multiple surgeries. "We learned that mine was a rare type of ovarian cancer called germ cell, akin to testicular cancer in men. Germ cell accounts for less than 5% of all ovarian cancer cases in the United States." Rebecca Esparza has been involved in cancer-related advocacy activities since 2003, representing many cancer advocacy organizations on Capitol Hill, including ACS CAN, LIVESTRONG, Ovarian Cancer Research Fund Alliance, National Coalition for Cancer Survivorship and One Voice Against Cancer. Throughout the years, she has participated in survivorship mentoring programs, research advocacy programs and scientific training conferences. 00:32:00Powerful Patientnoovarian cancer,germ cell ovarian cancerRebecca speaks for all women with ovarian cancer, including those taken from us too soon.f8b75fd9-3520-402f-9831-10e33fe151eb1027fullhttps://www.blogtalkradio.com/powerful-patient/2019/02/20/fighting-colorectal-cancer-by-understanding-your-risk-factorsHealthhttps://www.blogtalkradio.com/powerful-patient/2019/02/20/fighting-colorectal-cancer-by-understanding-your-risk-factors/#commentshttp://www.blogtalkradio.com/powerful-patient/2019/02/20/fighting-colorectal-cancer-by-understanding-your-risk-factorsWed, 20 Feb 2019 20:00:00 GMTFighting Colorectal Cancer by understanding your risk factorsWenora Johnson’s 3 rounds of cancer have left her a strong believer in genetic testing and patient advocacy. She is writing a book, In Spite of it All, and serves as a research advocate, to bring the perspective of a patient to the colorectal cancer research process. In 2011, Wenora was diagnosed with Stage 3B Colon Cancer.  “I knew I was in for the fight of my life, so I began to educate myself. I discovered Fight Colorectal Cancer, a patient advocacy group dedicated to providing support for people diagnosed with colorectal cancer. A big component of this is making people aware about the genetic links in colorectal cancer. “This cancer experience opened up a new chapter in my life. My research led me to take on an active role in research and advocacy with Fight Colorectal Cancer. I became a “RATS” (Research Advocacy Training and Support) member, meaning that I am advocating for the advancement of research, which is crucial to finding new and better treatments for patients with cancer. “In 2016, African-Americans diagnosed with colorectal cancer had the highest rate of death and the shortest survival period compared with other people with this disease. “So in June 2017, with the help of Eli Lilly and Company, our advocacy group launched a campaign called “Biomarked” to increase awareness of the role of biomarker and genetic testing in colorectal cancer. For more information on why this may be important to you, we invite you to visit www.FightCRC.org. March is Colorectal Cancer Awareness Month, we hope that this interview will provide information and encouragement to those dealing with colorectal cancer and to raise awareness of the need for timely screening. 00:32:00Powerful Patientnocancer,colorectal cancer,lynch syndrome,cancer riskWenora Johnson shares her story -- surviving cancer 3 times, she is passionate about understanding your biomarkers.c39cc864-89ea-494a-9de1-475700b7f5951026fullhttps://www.blogtalkradio.com/powerful-patient/2019/02/06/susie-brain-a-survivor-of-breast-cancer-works-with-researchers-to-find-a-cureHealthhttps://www.blogtalkradio.com/powerful-patient/2019/02/06/susie-brain-a-survivor-of-breast-cancer-works-with-researchers-to-find-a-cure/#commentshttp://www.blogtalkradio.com/powerful-patient/2019/02/06/susie-brain-a-survivor-of-breast-cancer-works-with-researchers-to-find-a-cureWed, 06 Feb 2019 18:00:00 GMTSusie Brain, a survivor of breast cancer, works with researchers to find a cureSusie Brain speaks with Mike Lawing about her work as an advocate for survivors with breast cancer. For the past 12 years, Susie Brain has worked with both local and national advocacy organizations serving on research and survivorship committees involving government, academic, and non-profit organizations. Brain is a trained breast cancer survivor advocate with expertise in both research and patient communications. Brain served as a stakeholder reviewer for the American Cancer Society, as Consumer Grant Reviewer for the DOD Breast Cancer Research Program, a Komen “Advocate in Science” reviewing grants for Komen, and as an advocate observer for the California Breast Cancer Research Program. At the Stanford Cancer Institute, Brain serves as a community member/patient advocate on the scientific review committee and a member of the clinical trials advisory committee. She is a patient advisor for BreastCancerTrials.org and also serves on the consumer and community advisory committee of the ATHENA Breast Health Network and WISDOM Study, a collaboration of the five University of California Medical Centers. Brain provides direct support and resources to breast cancer patients while serving as a volunteer peer mentor with the American Cancer Society’s Reach-To-Recovery Program and as a helpline volunteer with Living Beyond Breast Cancer. 00:33:00Powerful Patientnocancer,breast cancer,survivorship,cancer survivor,cancer researchSusie Brain speaks with Mike, Robin and Joyce about her work as a survivor and advocate with breast cancer.9c543ec3-ff35-4551-8cca-412a45d4fb071025fullhttps://www.blogtalkradio.com/powerful-patient/2019/01/31/young-man-fights-cancer-twice--with-great-family-supportHealthhttps://www.blogtalkradio.com/powerful-patient/2019/01/31/young-man-fights-cancer-twice--with-great-family-support/#commentshttp://www.blogtalkradio.com/powerful-patient/2019/01/31/young-man-fights-cancer-twice--with-great-family-supportThu, 31 Jan 2019 21:00:00 GMTYoung Man fights cancer twice -- with great family supportMartin Townsend had just gotten his first taste of independence. He had enjoyed his freshman year at the University of Alabama at Tuscaloosa and was back on campus for his sophomore year. But he didn’t feel well. Random fevers and exhaustion were sapping his strength. He pushed past his symptoms for a while, but eventually went to the doctor, and in March 2011, he was diagnosed with biphenotypic leukemia, a rare cancer that combines features of other leukemia types. He would have to leave school and start treatment for cancer. He spent the next three and a half years in and out of the hospital, with chemotherapy, steroids, and surgery.  By 2014 his remission seemed solid, but in 2015 his blood work showed that the leukemia had returned.  This time he underwent immunotherapy and a bone-marrow transplant. Today, he is feeling well and regaining strength. Now 25, he can look back at the illness that halted his college career and see how it has shaped his character. “I was 19 when I was diagnosed, at a point in my life where I was just beginning to figure things out,” Martin says. “To have that foundation flipped upside-down gives you a perspective that not every young adult is going to have. Not everyone has to face their own mortality or give up their independence.” He was never alone through his illness; his mother, Virgie Townsend, stepped in as his primary caregiver. “My mom is the type of mom who will be there in every way she can, and then some,” Martin says with a laugh. “I can only imagine how horrifying it would be to hear that your child has a life-threatening illness.” Throughout this voyage their relationship shifted multiple times, from independence to reliance and back.   Their shared experience has catalyzed both Martin and Virgie to advocate for cancer patients. 00:32:00Powerful Patientnocancer,young adults with cancer,leukemia,biphenotypic leukemiaYoung people with cancer wrestle not only with their illness but also with independence and reliance on family.004f59f7-82a1-46fc-9336-0e997217f9f51024fullhttps://www.blogtalkradio.com/powerful-patient/2018/11/09/awareness-of-pancreatic-cancerHealthhttps://www.blogtalkradio.com/powerful-patient/2018/11/09/awareness-of-pancreatic-cancer/#commentshttp://www.blogtalkradio.com/powerful-patient/2018/11/09/awareness-of-pancreatic-cancerFri, 09 Nov 2018 20:00:00 GMTAwareness of Pancreatic CancerAllison Mayoral of the Pancreatic Cancer Action Network (PanCan.org) speaks with Mike, Robin, and Joyce about pancreatic cancer.  In her role as Patient Services Manager Allison works to provide comprehensive informational service and to inspire hope through resources. PanCan promotes and support research into this third leading cause of cancer-related death in the United States.   PanCan's Patient Central adheres to five basic principles in guiding callers: See a Specialist.  It is critical to consult with specialists who diagnose and treat a high volume of pancreatic cancer patients.  Patient Central can provide a list of specialists in the caller's area. Determine the Best Treatment Options.  Every tumor is different.  Callers can learn which treatments may work best for them through molecular profiline. Consider Clinical Trials.  Clinical trials should be condiered during every treatment decision, including at diagnosis.  A Patient Central Associate can help callers start their search. Maintain Quality of Life.  Supportive or palliative care, good diet and nutrition, and connecting with others will all aid in this. Help Accelerate Research.  The Patient REgistry is a database created to look for patterns in treatments, side effect management and diagnostics that will lead to improved outcomes for pancreatic cancer patients -- powered by patient and caregiver For more information, see http://pancan.org   00:33:00Powerful Patientnopancreatic cancer,awarenessAllison Mayoral of PanCan speaks with us about Pancreatic Cancer.9f2f364b-2d88-4ff1-be5a-ee71129a228d1022fullhttps://www.blogtalkradio.com/powerful-patient/2018/10/16/research-toward-safer-mri-imagingHealthhttps://www.blogtalkradio.com/powerful-patient/2018/10/16/research-toward-safer-mri-imaging/#commentshttp://www.blogtalkradio.com/powerful-patient/2018/10/16/research-toward-safer-mri-imagingTue, 16 Oct 2018 19:00:00 GMTResearch toward safer MRI imagingDr. Peter Caravan of Massachusetts General Hospital talks with Robin and Joyce about his research toward a safer contrast medium for MRI's. MRI imaging is a very important tool in diagnosing medical conditions and working out treatment plans.  It is often preferred over X-ray and CT because it does not use radiation. In order to see some soft tissue structures, it is sometimes necessary to use a "contrast medium," a chemical compound injected into the bloodstream that improves the contrast of the grey-on-grey image, helping the radiologist see more clearly where the problem is.   Dr. Caravan is Associate Professor in Radiology and Chemistry at Harvard Medical School.  He is interested in the design and formulation of new imaging probes for MRI, PET, and NIR) and theis application in detecting changes and monitoring response to therapy.  His projects include a PET probe to detect thrombus; detecting fibrotic changes in kidney, lung, and heart diseases; and MR probes to sense changes in oxygen levels, acidity, and enzymatic activity.     00:37:00Powerful Patientnomedical imaging,MRI,gadoliniumDr. Caravan is working to find ways to improve MRI images with safer contrast media.d66f7637-0c00-4bc8-9dd6-024cb3e312261021fullhttps://www.blogtalkradio.com/powerful-patient/2018/09/28/mris-and-contrast-gadoliniumHealthhttps://www.blogtalkradio.com/powerful-patient/2018/09/28/mris-and-contrast-gadolinium/#commentshttp://www.blogtalkradio.com/powerful-patient/2018/09/28/mris-and-contrast-gadoliniumFri, 28 Sep 2018 20:00:00 GMTMRIs and contrast gadoliniumMedical images done using Magnetic Resonance Imaging (MRI) machines provide excellent images that can help your doctor see what is going on inside you, make a diagnosis, and work out a treatment plan. We can best gain the benefits of any technology if we understand and respect its strengths and weaknesses, joys and cautions -- what does it do best, where it may be less beneficial than another, and what cautions are there that we need to be wary of.  Cars, phones, x-rays, nuclear energy ... each is wonderful in many situations, but can be problematic on other settings.  Without an eye to safety, they can be harmful. The images are gray-on-gray, so it takes a great deal of experience and expertise to interpret the images.  Depending what the image is intended to study, it may be important to improve the contrast so that certain structures stand out more clearly.  The contrast medium most frequently used with MRIs is gadolinium (Gd), a chemical substance or "dye" which is injected into your bloodstream before the imaging is done.   Joyce and Robin speak with Sharon Williams who exerienced symptoms following a series of MRIs that were determined to be caused by a buildup of gadolinium in certain tissues of her body.  Sharon and others have worked with Dr. Richard Semelka and other physicians to compile patient experiences and learn how to identify the problem, test for gadolinium retention, and treat the problem.               00:35:00Powerful PatientnoMRIs provide excellent images that help our doctors help us. What cautions are there to be aware of?36c4d882-010b-483d-aca6-21165db173941020fullhttps://www.blogtalkradio.com/powerful-patient/2018/09/06/balance-and-preventing-falls-for-senior-citizensHealthhttps://www.blogtalkradio.com/powerful-patient/2018/09/06/balance-and-preventing-falls-for-senior-citizens/#commentshttp://www.blogtalkradio.com/powerful-patient/2018/09/06/balance-and-preventing-falls-for-senior-citizensThu, 06 Sep 2018 19:00:00 GMTBalance and Preventing Falls for Senior CitizensMike and Joyce speak with Bharti Sharma, a physical therapist in North Carolina.  One Source Rehab in Forest City, NC, is an outpatient rehabilitation provider for Rutherford Regional Health System, a small community hospital in Rutherford County, a primarily rural county in western North Carolina with a population of just over 66 thousand people. Rutherford Regional has an excellent nurse navigator program and is accredited by the Commission on Cancer; it is one of the smallest hospitals in the country with these programs. Earlier this month Bharti gave an excellent presentation on things that impair our ability to stay balanced and increase our risk of falls, as well as some simple exercises designed to address the most common problems. Earlier this year Dr. Gwen Bergen spoke with us on the Powerful Patient about The Cost of Falling Among Older Adults focusing on the cost and burden to the healthcare system. Our interview with Bharti will focus on prevention, and allow our listeners to learn about simple exercises that can be done by almost everyone using a chair or countertop to aid in stabilizing the body during the exercises. The exercises that Bharti will present can be found online.  Go to www.my-exercise-code.com and enter code AAMN53D in the box on that page. Our thanks to One Source Rehab and Rutherford Hospital for sharing Bharti's time and expertise with us all. 00:37:00Powerful Patientnofall prevention,senior healthFalling down can be a serious source of medical complications for seniors. These few easy exercises can increase balance and prevent falls.7f1fb9ae-9a06-4834-bd18-1fce07a74ec51019fullhttps://www.blogtalkradio.com/powerful-patient/2018/08/02/judy-nicholson-kidney-cancer-foundationHealthhttps://www.blogtalkradio.com/powerful-patient/2018/08/02/judy-nicholson-kidney-cancer-foundation/#commentshttp://www.blogtalkradio.com/powerful-patient/2018/08/02/judy-nicholson-kidney-cancer-foundationThu, 02 Aug 2018 19:00:00 GMTJudy Nicholson Kidney Cancer FoundationFor this and more podcasts see http://www.powerfulpatient.org Mike, Joyce, and Robin speak with Nick Nicholson, founder of the Judy Nicholson Kidney Cancer Foundation.  Nick shares the story of his late wife Judy who was diagnosed with kidney cancer after it had already spread to other parts of her body.  Nick and Judy wanted to help other families going through their own stressful experiences with kidney cancer. Mr. Nicholson talks about the programs offered by the Foundation, and the new directions they are embarking on. They have been providing assistance primarily in Florida, but are now organizing a chapter in Indiana, and are organizing patient/provider symposia in several cities across the United States. At the symposium there are 5 professional speakers and at least one survivor speaker, plus plenty of time for patients to interact with each other and with the professionals in the room. For more information, see the Judy Nicholson Foundation website. Mr. Nicholson mentions being inspired by attending an international meeting of the International Kidney Cancer Coalition. Events are listed on this page.   00:36:00Powerful PatientnoNick Nicholson joins Mike to talk about carry forward his late wife's legacy and working to cure kidney cancer.84368ce4-ccf5-403a-b359-4dff571ab8e31018fullhttps://www.blogtalkradio.com/powerful-patient/2018/07/30/wind-river-retreat-for-people-undergoing-lung-cancer-treatmentHealthhttps://www.blogtalkradio.com/powerful-patient/2018/07/30/wind-river-retreat-for-people-undergoing-lung-cancer-treatment/#commentshttp://www.blogtalkradio.com/powerful-patient/2018/07/30/wind-river-retreat-for-people-undergoing-lung-cancer-treatmentMon, 30 Jul 2018 20:00:00 GMTWind River retreat for people undergoing lung cancer treatment  Shannon and Dave from Wind River Retreats talk about their forthcoming free retreat for lung cancer patients resident of North and South Carolina. Our Cancer Wellness Retreats  emphasize being physically active and playful, having creative time connecting with others, healthy eating, AND quality time in Nature. We just ask that you be willing to laugh, learn, and share! Their retreats are aimed at men and women currently living with cancer, many with more advanced cancers.  Their next retreats will be in Fall 2018. Retreat spots are open to North Carolina residents. All cancer types are welcome and the average age of participants is between 29 - 55.   Their fall retreats will be identified and posted soon.   Sign up HERE for the Wind River Newsletter for information on workshops and meet-ups.   Note that they are only accepting applicants from North Carolina for these multi-day retreats.    00:33:00Powerful PatientnoShannon and Dave from Wind River Retreats talk about their forthcoming free retreat for lung cancer patients and survivorse44ac9da-8995-439d-9ed8-f1a605b874211017fullhttps://www.blogtalkradio.com/powerful-patient/2018/07/19/debra-gottsleben-speaking-internationally-as-a-patient-advocateHealthhttps://www.blogtalkradio.com/powerful-patient/2018/07/19/debra-gottsleben-speaking-internationally-as-a-patient-advocate/#commentshttp://www.blogtalkradio.com/powerful-patient/2018/07/19/debra-gottsleben-speaking-internationally-as-a-patient-advocateThu, 19 Jul 2018 20:30:00 GMTDebra Gottsleben speaking internationally as a patient advocateDebra Gottsleben is the vice-chair of the Patient Advisory Board of KCCure, a non-profit organization focused on increasing research on kidney cancer and finding a cure.  Debra has recently spoken before the American Urological Association and the European Society of Medical Oncology about the work of KCCure in gathering experiences from patients that may help to inform the work of the scientists.   See her bio at https://kccure.org/2018/04/debgottsleben/ 00:31:00Powerful Patientnokidney cancerDebra Gottsleben advocates for kidney cancer patients with urologists and oncologists.9d0d7ed4-21a1-4cdf-892a-3ce57d0790b51016fullhttps://www.blogtalkradio.com/powerful-patient/2018/06/20/world-kidney-cancer-day-2018Healthhttps://www.blogtalkradio.com/powerful-patient/2018/06/20/world-kidney-cancer-day-2018/#commentshttp://www.blogtalkradio.com/powerful-patient/2018/06/20/world-kidney-cancer-day-2018Wed, 20 Jun 2018 20:00:00 GMTWorld Kidney Cancer Day 2018June 21 2018 is World Kidney Cancer Day, sponsored by the International Kidney Cancer Coalition (IKCC.org).  Robin and Joyce talk about why it is important to be aware of the risks of kidney cancer and other issues that may arise in your digestive and urinary systems, which usually operate quietly in the background of our consciousness. We encourage everyone to take 2 minutes to answer IKCC's fun quiz at https://worldkidneycancerday.org/.  If you do the quiz from a phone or laptop you can do a selfie and add green lipstick to Kiss Off Kidney Cancer. Have fun and spread the word, and be a Powerful Patient         00:17:00Powerful Patientnokidney cancerIt is important to be aware of early signs of kidney cancer and other "sneaky" diseases.90ac6d20-4210-4683-8ff9-c077d938797f1015fullhttps://www.blogtalkradio.com/powerful-patient/2018/04/23/powerful-patients-talk-kidney-cancer-a-summary-of-the-2018-ikcc-conventionHealthhttps://www.blogtalkradio.com/powerful-patient/2018/04/23/powerful-patients-talk-kidney-cancer-a-summary-of-the-2018-ikcc-convention/#commentshttp://www.blogtalkradio.com/powerful-patient/2018/04/23/powerful-patients-talk-kidney-cancer-a-summary-of-the-2018-ikcc-conventionMon, 23 Apr 2018 15:30:00 GMTPowerful patients talk kidney cancer: A Summary of the 2018 IKCC ConventionAnnual Convention of the International Kidney Cancer Coalition held in Mexico City, Mexico in April, 2018 had delegates from 25 nations attending. Join our Powerful Patient Co-Hosts Robin, Joyce, and Mike as they discuss the meeting.  In addition to updates on the latest treatment options for kidney cancer, delegates from support groups worldwide shared ideas for improving the experience of patients from diagnosis through treatment, even in resource-limited areas.           00:35:00Powerful Patientnokidney cancer,survivors,patient engagement,patient supportJoyce, Robin, and Mike discuss powerful patients at the 2018 IKCC Conventionae38c8aa-ff27-4e81-a93c-c92f36a8041d1014fullhttps://www.blogtalkradio.com/powerful-patient/2018/04/04/support-for-brain-disordersHealthhttps://www.blogtalkradio.com/powerful-patient/2018/04/04/support-for-brain-disorders/#commentshttp://www.blogtalkradio.com/powerful-patient/2018/04/04/support-for-brain-disordersWed, 04 Apr 2018 16:30:00 GMTSupport for Brain DisordersRobin Riddle, CEO of the Brain Support Network. learned about neurodegenerative diseases when her late father, Larry, was diagnosed with Progressive Supranuclear Palsy (PSP) in 2004. With the help of three other caregivers, in July 2004, Ms. Riddle started the “San Francisco Bay Area PSP Support Group.” This Group became Brain Support Network in 2005 with expansion to include MSA, CBD, and LBD.  Over 50% of diagnoses by Neurologists are wrong.  Because symptoms of many neurological diseases overlap, clinical assessment is often incorrect, even when the diagnosis is delivered by an experienced neurologist.  Without an accurate diagnosis, the recommended treatment may not be on target.  The group supports families facing these difficult disorders, and works with physicians and researchers to improve diagnostic methods. The donation of Larry’s brain in 2007 to Mayo Clinic in Jacksonville, Florida, was Robin’s first organization of a brain donation. In June 2011 the “PSP Genetics Study Group”, including scientists from Mayo, published in Nature Genetics a landmark study using Larry’s brain tissue that identified three new genes linked to PSP.  By linking the symptoms and diagnosis with the DNA and chemistry of the brain, scientists are beginning to understand what treatments might be more helpful. For more information, see https://www.brainsupportnetwork.org/ There are also online support groups for each of these conditions at http://smartpatients.com/ Earlier in her career, Ms. Riddle worked in marketing for high tech companies in Silicon Valley, including Covad, Unisys, and NetGravity. She holds BA and MA degrees from Stanford and an MBA from the University of Pennsylvania Wharton Business School.   00:35:00Powerful Patientnobrain health,Neurological Disorders,neurodegenerative disease,Alzheimers,dementiaRobin Riddle of the Brain Support Network shares how the group assists people with neurological conditions and dementia and their caregivers.98a7332d-81c1-4762-9f7c-36a15356eacf1013fullhttps://www.blogtalkradio.com/powerful-patient/2018/03/23/the-cost-of-falls-among-older-americansHealthhttps://www.blogtalkradio.com/powerful-patient/2018/03/23/the-cost-of-falls-among-older-americans/#commentshttp://www.blogtalkradio.com/powerful-patient/2018/03/23/the-cost-of-falls-among-older-americansFri, 23 Mar 2018 15:00:00 GMTThe Cost of Falls among Older AmericansDr. Gwen Bergen speaks with us about the cost to the health care system of falls among older adults in the United States.  In addition to the risk to the individual of serious injury and loss of mobility for the remainder of their lives, the health care system bears a disproportionate medical cost. What is not included in this study is the cost in quality of life and the cost to family caregivers. In 2015, the estimated medical costs attributable to both fatal and nonfatal falls in older US adults was approximately $50 billion. The findings come from a recent analysis by Dr. Bergen and colleagues, published in the Journal of the American Geriatrics Society. For nonfatal falls in adults aged 65 and older, Medicare paid approximately $28.9 billion, Medicaid $8.7 billion and private and other payers $12.0 billion. Overall medical spending for fatal falls was estimated to be $754 million. “Preventive strategies that reduce falls among older adults could lead to a substantial reduction in health care spending,” wrote the authors. Dr. Bergen now serves as a Behavioral Scientist on the Home and Recreation Team in the Division of Unintentional Injury Prevention at CDC’s National Center for Injury Prevention and Control. Before serving in her current position, she was on the Transportation Safety Team for six years. She works to prevent older adult falls, to understand older adult mobility issues, and investigates better sources of surveillance and economic data for unintentional injury. For more information on preventing falls please see http://www.cdc.gov/steadi where you will find information for older adults, their families, and their physicians as well.               00:28:00Powerful Patientnosenior citizens,Falls,breaking a hip,insurance,medicareDr. Gwen Bergen speaks with us about the cost to the health care system of falls among older adults in the United States and how to prevent falls31470028-e62e-42dd-b326-2ef3c383654e1012fullhttps://www.blogtalkradio.com/powerful-patient/2018/03/19/quilts-and-healthHealthhttps://www.blogtalkradio.com/powerful-patient/2018/03/19/quilts-and-health/#commentshttp://www.blogtalkradio.com/powerful-patient/2018/03/19/quilts-and-healthMon, 19 Mar 2018 17:00:00 GMTQuilts and Health Clare Luz, one of the three authors of a beautiful new book QUILTS AND HEALTH talks with Joyce and Mike about this beautiful review of the art of quilting and what it gives to the maker of the quilt as well as the recipient. The book explores the healing power of quilts and quiltmaking and the deep connections between art and health. Name an illness, medical condition, or disease and you will find quiltmaking associated with it. From Alzheimer’s to Irritable Bowel Syndrome, Lou Gehrig's Disease to Crigler-Najjar Syndrome, and for nearly every form of cancer, millions of quilts have been made in support of personal well-being, health education, patient advocacy, memorialization of victims, and fundraising. In Quilts and Health, Marsha MacDowell, Clare Luz, and Beth Donaldson explore the long historical connection between textiles and health and its continued and ever growing importance in contemporary society. This lavishly illustrated book brings together hundreds of health-related quilts—with imagery from abstract patterns to depictions of fibromyalgia to an ovarian cancer diary—and the stories behind the art, as told by makers, recipients, healthcare professionals, and many others.  Quilts and Health, by Beth Donaldson, Clare Luz, and Marsha MacDowell Clare Luz is Assistant Professor in the department of Family and Community Medicine, College of Osteopathic Medicine, Michigan State University. The college created a position for her to continue with her research related to the eldercare workforce and arts and health but also to develop a new program called AgeAlive. Note cards reprinting Joyce's Healing Garden quilt are available for sale at http://www.powerfulpatient.org 00:33:00Powerful Patientnoquilts,health,cancer,loss,griefQuilts and Health explore the healing power of quilts and quiltmaking and the deep connections between art and health.677bc826-dc08-4bc7-b890-4d9f0e7fa0df1010fullhttps://www.blogtalkradio.com/powerful-patient/2018/01/19/developments-in-renal-medullary-carcinomaHealthhttps://www.blogtalkradio.com/powerful-patient/2018/01/19/developments-in-renal-medullary-carcinoma/#commentshttp://www.blogtalkradio.com/powerful-patient/2018/01/19/developments-in-renal-medullary-carcinomaFri, 19 Jan 2018 23:00:00 GMTDevelopments in Renal Medullary CarcinomaRobin and Mike have an enlightening discussion with Cora Connor, Founder of R. M. C. Inc. a grassroots non-profit established to provide information and support for those suffering with Renal Medullary Carcinoma. They will talk about the rarity and lack of research and knowledge about this little-known cancer and how the collaboration of a worldwide group of doctors, researchers and advocates have led to the founding of the RMC Alliance to raise awareness and establish treatment standards and an active database to combat this disease 00:30:00Powerful Patientnocancer,rare disease,sickle cell trait,RMC Alliance,Kidney CancerNew efforts are being made to understand and treat this very rare cancercdda95d3-7596-4690-bace-8b7ef3a38772107fullhttps://www.blogtalkradio.com/powerful-patient/2018/01/18/updating-the-advocacy-activities-of-robin-and-mikeHealthhttps://www.blogtalkradio.com/powerful-patient/2018/01/18/updating-the-advocacy-activities-of-robin-and-mike/#commentshttp://www.blogtalkradio.com/powerful-patient/2018/01/18/updating-the-advocacy-activities-of-robin-and-mikeThu, 18 Jan 2018 23:00:00 GMTUpdating the Advocacy Activities of Robin and MikeRobin and Mike have a discussion about their current activites in healthcare advocacy, and how advocacy can be benficial to persons dealing with personal challenges in .medical conditions 00:31:00Powerful Patientnokidney cancer,survivorship,advocacy,volunteering,mentoringA review of what Robin and Mike are doing in healthcare advocacy.6c90fd7e-be98-48b4-8b37-233466753f9a109fullhttps://www.blogtalkradio.com/powerful-patient/2017/12/15/what-would-an-artificial-pancreas-do-for-people-with-diabetesHealthhttps://www.blogtalkradio.com/powerful-patient/2017/12/15/what-would-an-artificial-pancreas-do-for-people-with-diabetes/#commentshttp://www.blogtalkradio.com/powerful-patient/2017/12/15/what-would-an-artificial-pancreas-do-for-people-with-diabetesFri, 15 Dec 2017 16:00:00 GMTWhat would an Artificial Pancreas do for people with Diabetes?The pancreas plays a key role in producing hormones and enzymes that help us digest our food and extract the nutrients from food which are passed to our cells.  Without a properly functioning pancreas, our bodes cannot digest foods and nourish the cells of our bodies. Diabetes is a condition where the level of sugar is too high, usually caused by a fault in the regulation of sugar and insulin in the body.  People with diabetes have to manage manually the system of sugar regulation which is normally done automatically for us by the pancreas.  They may need to test their blood sugar levels multiple times a day, and dose themselves with insulin to balance the sugars and carbohydrates they eat.  Some people manage well; others may have a condition that is more fragile and changeable making this manual system very tricky to manage.  When sugar is too high or too low the person can feel very sick, can lose consciousness or get confused, making it even more difficult to figure out what to do. Robin and Joyce talk with Dr. Dan Finan about the many efforts to automate this tricky balancing system -- to essentially create an artificial pancreas that can measure the blood sugar level and respond with the appropriate dose of insulin even when the patient is sleeping.   It should be noted too that these efforts toward an artificial pancreas in fact focus on the balance of insulin and do not address the other digestive enzymes which are also essential to a healthy digestive system. Dr. Dan Finan is Director of Research at the Juvenile Diabetes Research Foundation (JDRF). JDRF is the only global organization with a strategic research plan to end type 1 diabetes (T1D). JDRF wants to keep people with T1D healthy and safe today until we reach our ultimate goal of a cure and universal prevention of T1D. See www.jdrf.org   00:33:00Powerful Patientnodiabetes,diabetes treatment,artificial pancreasWe speak with Dr. Dan Finan of the Juvenile Diabetes Research Foundation about the development efforts toward an artificial pancreas.ad03cab7-76c9-413c-8c42-dd85f11426ea103fullhttps://www.blogtalkradio.com/powerful-patient/2017/12/07/patient-centered-primary-care--revising-payment-models-to-improve-careHealthhttps://www.blogtalkradio.com/powerful-patient/2017/12/07/patient-centered-primary-care--revising-payment-models-to-improve-care/#commentshttp://www.blogtalkradio.com/powerful-patient/2017/12/07/patient-centered-primary-care--revising-payment-models-to-improve-careThu, 07 Dec 2017 15:00:00 GMTPatient-Centered Primary Care - Revising Payment Models to Improve CareArlene Ash, Ph.D., is a professor at the University of Massachusetts Medical School in Worcester, in the Department of Quantitative Health. Dr. Ash and colleagues at the University of Massachusetts Medical School (UMass) have helped MassHealth (Massachusetts’ Medicaid and Children’s Health Insurance Programs) to calculate fair  payments to health care systems for providing integrated, coordinated care to patient panels whose care they manage. The key idea is that provider groups organize themselves as Accountable Care Organizations (ACOs), and the State pays them to take responsibility for the health needs of the Medicaid enrollees who sign up with them. Dr. Ash’s group has developed formulas that pay ACOs more when they care for people with more complex medical and/or “social” risks. While payments for managed care have long been tailored to pay more for medical complexity, what is new here is also paying more for social complexity. Starting in October 2016, and based on the work at UMass, MassHealth now pays managed care organizations using a social determinants of health (SDH) model that pays more for housing instability, behavioral health issues, disability, and neighborhood-level stressors in addition to medical complexity. Dr. Ash speaks with us about her research, and how better payment systems can encourage more efficient and effective health care, and, ultimately, better health.  Dr. Ash is a methods expert on risk adjustment in health services. She has pioneered tools for using administrative data to monitor and manage health care systems, including those now used by the US Medicare program. Many of her ~200 research publications reflect her long-standing interests in women’s health; gender, age and racial disparities; and, quality, equity and efficiency in health care financing and delivery. She has also been involved in efforts to improve the integrity of US elections. 00:29:00Powerful Patientnohealthcare reform,primary care,medically underservedArlene Ash discusses suggested strategies for revising how doctors are paid to improve primary care.639ef303-7e12-4453-913a-b70b675aeaf2102fullhttps://www.blogtalkradio.com/powerful-patient/2017/12/02/celebrating-patient-solidarity-day-and-welcoming-mike-lawing-backHealthhttps://www.blogtalkradio.com/powerful-patient/2017/12/02/celebrating-patient-solidarity-day-and-welcoming-mike-lawing-back/#commentshttp://www.blogtalkradio.com/powerful-patient/2017/12/02/celebrating-patient-solidarity-day-and-welcoming-mike-lawing-backSat, 02 Dec 2017 20:30:00 GMTCelebrating Patient Solidarity Day and Welcoming Mike Lawing Back! Robin Martinez and Joyce Graff are happy to welcome Mike Lawing back to the team! Mike was featured in a recent issue of CancerToday http://www.cancertodaymag.org/Summer2017/Pages/The-Gift-of-Music.aspx Today is Patient Solidarity Day!  This is a good opportunity for us to talk about what Patient Empowerment means to each of us, and how we as individuals and Powerful Patient as a group work to empower patients.  Why is this important?  Come listen in and add your two cents as well. Patients have the right to be engaged as key partners, empowered to play a genuine and meaningful role in shaping decisions about their own health.  This Patient Solidarity Day, advocates from across the world are standing united in recognition of the significant need for, and benefit of, empowered and informed patients.  Patient empowerment will only be achievable if we, as patient advocates, decision-makers, policy-makers, academics and industry, all work together for: "Globally empowered patients: Power through Knowledge." http://www.patientsorganizations.org #PSD2017 #powerpt @PowerfulPatient           00:42:00Powerful Patientnopatient empower,patient advocacyToday is Patient Solidarity Day! We talk about what Patient Empowerment means to each of us.54744bab-28c9-4ba7-b5d4-f975bb1b87bb101fullhttps://www.blogtalkradio.com/powerful-patient/2017/06/22/financial-toxicity-in-cancer-treatmentHealthhttps://www.blogtalkradio.com/powerful-patient/2017/06/22/financial-toxicity-in-cancer-treatment/#commentshttp://www.blogtalkradio.com/powerful-patient/2017/06/22/financial-toxicity-in-cancer-treatmentThu, 22 Jun 2017 20:30:00 GMTFinancial Toxicity in Cancer TreatmentJoyce and Robin speak with Dr. Leonard Lichtenfeld, Deputy Chief Medical Officer for the American Cancer Society.  They discuss a recent article by Dr. Zheng and colleagues at the American Cancer Society that appeared in their journal Cancer in May, along with an editorial by Dr. Daniel Goldstein. "Financial toxicity is now a well established and generally accepted toxicity related to cancer care...In recent years, several reports have demonstrated the significant ifnancial issues faced by some patients with cancer.  A study in the state of Washington demonstrated that individuals with cancer are 2.7 times more likely to declare bankruptcy than individuals without cancer.  Furthermore, those who had been bankrupted had a 79% greater risk of death than patients who were not bankrupt." [Goldstein] We rely on the Food and Drug Administration to protect us from toxicity in our medications -- the unforeseen damaging side effects that may accompany drugs intended to help.  But what additional stress, burden -- and in fact toxicity -- results from the cost of cancer care?  And how much is that causing damage to our mental and physical health? For more information, call the American Cancer Society at 1-800-227-2345 00:33:00Powerful Patientnofinancial toxicity,cancer careIs the cost of care damaging the mental and physical health of the patient? Dr. Leonard Lichtenfeld talks about financial toxicity as a factor in cancer care.https://www.blogtalkradio.com/powerful-patient/2017/04/13/involuntary-discharge-from-dialysisHealthhttps://www.blogtalkradio.com/powerful-patient/2017/04/13/involuntary-discharge-from-dialysis/#commentshttp://www.blogtalkradio.com/powerful-patient/2017/04/13/involuntary-discharge-from-dialysisThu, 13 Apr 2017 21:00:00 GMTInvoluntary Discharge from DialysisPatients who are disruptive or non-compliant risk being discharged from dialysis, which puts them at high risk of dying. There are two sides to this question: Patients should follow directions and behave well toward their caregiversDialysis centers should understand the pressures patients are under and do their best to resolve situations before they get to an unmanageable state. Robin and Joyce speak with Dr. Robert Allan Bear, a retired nephrologist from Toronto, Canada, who serves as an advisor to a number of dialysis centers both in the US and Canada. Dr. Bear Tweets and blogs @RobertAllanBear.  He is the author of Sorrow's Reward, a book of reflections of patients, family members, physicians and staff in a dialysis unit.   01:54:00Powerful Patientnokidney disease,kidney failure,dialysisPatients who are disruptive or non-compliant risk being discharged from dialysis, which puts them at high risk of dying.https://www.blogtalkradio.com/powerful-patient/2017/03/30/relay-for-life-now-is-the-time-to-cure-cancerHealthhttps://www.blogtalkradio.com/powerful-patient/2017/03/30/relay-for-life-now-is-the-time-to-cure-cancer/#commentshttp://www.blogtalkradio.com/powerful-patient/2017/03/30/relay-for-life-now-is-the-time-to-cure-cancerThu, 30 Mar 2017 19:00:00 GMTRelay for Life ... now is the time to cure cancerJoyce Graff was the keynote speaker at Northeastern University on March 24, 2017.  She spoke at midnight, at the Luminaria ceremony, a moving tribute to the many people for whom the students were raising money to cure cancer.  Relay for Life is an international movement to raise money for cancer research.  In the US it is sponsored by the American Cancer Society.  The students at Northeastern have been raising money throughout the year. Here Joyce presents the talk she gave at Northeastern, passing the baton to this new generation of doctors, scientists and patients. 00:28:00Powerful PatientnoRelay For Life,cancer research,cancer,patient advocacyJust as many technologies had to grow to the point that SmartPhones are possible, so in medicine many technologies are now at the point that a cure for cancer ihttps://www.blogtalkradio.com/powerful-patient/2017/03/23/debbie-does-bethesdaHealthhttps://www.blogtalkradio.com/powerful-patient/2017/03/23/debbie-does-bethesda/#commentshttp://www.blogtalkradio.com/powerful-patient/2017/03/23/debbie-does-bethesdaThu, 23 Mar 2017 19:30:00 GMTDebbie does BethesdaDebbie B. shares her adventure with a rare kidney tumor, and show us the importance of learning her options. Debbie was diagnosed with kidney cancer.  Doctors recommended removing her kidney.  Before proceeding, Debbie asked questions, listened to her instincts, and worked with the doctors to learn  what other options were appropriate in her case. Experts at the National Institutes of Health have been studying kidney cancer for 30 years, working toward finding a cure for kidney cancer.  In doing so they have learned that kidney cancer is not one but many diseases, with different cell types that behave differently and respond differently to treatments.  Join us to talk with Debbie about what discovered, and how important it was to do this careful research. 00:46:00Powerful Patientnokidney cancerDebra shares her adventures with kidney cancer and oncocytoma.https://www.blogtalkradio.com/powerful-patient/2017/03/02/patients-and-doctors-unite-to-cure-kidney-cancerHealthhttps://www.blogtalkradio.com/powerful-patient/2017/03/02/patients-and-doctors-unite-to-cure-kidney-cancer/#commentshttp://www.blogtalkradio.com/powerful-patient/2017/03/02/patients-and-doctors-unite-to-cure-kidney-cancerThu, 02 Mar 2017 20:00:00 GMTPatients and doctors unite to cure Kidney CancerThe Kidney Cancer Research Alliance (KCCure) is a grassroots organization of patients, caregivers, doctors and medical researchers dedicated to curing kidney cancer through increased funding that accelerates research. Dena Battle talks with Joyce and Robin about her story and how she and several doctors came to found KCCure. Her husband Chris Battle, a former Capitol Hill administrative aide, and partner at Adfero Group, fought kidney cancer for four years. He and his wife, Dena, a principal at the lobbying firm Capitol Counsel, detailed his struggle with the disease in a blog called The Kidney Cancer Chronicles, which was at times funny and irreverent and also heartbreaking. Chris Battle’s former boss, then-Rep. Asa Hutchinson, R-Ark., remembered his aide as a pioneer in digital communications, an innovator who brought his knack for humor-infused storytelling to his fight against cancer. “He has been very open in sharing his struggles, his battle and what his family has been going through and has touched thousands upon thousands who have followed his blog,” Hutchinson said Thursday. “That is a real lasting legacy: his personal strength and sense of humor he demonstrated at a very difficult time.” Jeff Mascott, Adfero’s managing partner, agreed that Battle’s gift with the written word had made him a celebrity of sorts in the kidney cancer community. “Because Chris is such an amazing writer, and he and Dena have done so much research on their own, his blog has had a much larger impact than anybody realizes,” Mascott said. Dena has banded together with Dr. Hans Hammers, Chris' physician, to build upon the community that Chris created and find a cure. 00:34:00Powerful Patientnokidney cancer,researchDena Battle discusses how she worked to found the Kidney Cancer Research Alliance KCCurehttps://www.blogtalkradio.com/powerful-patient/2017/02/23/new-hope-for-batten-diseaseHealthhttps://www.blogtalkradio.com/powerful-patient/2017/02/23/new-hope-for-batten-disease/#commentshttp://www.blogtalkradio.com/powerful-patient/2017/02/23/new-hope-for-batten-diseaseThu, 23 Feb 2017 20:00:00 GMTNew Hope for Batten DiseaseBatten Disease is one of the group of lysosomal storage diseases for which there is finally a medication to help. 00:33:00Powerful Patientnobatten disease,bdsra,lysosomal storage disorders,rare disease,genetic testingBatten Disease is one of the group of lysosomal storage diseases for which there is finally a medication to help.https://www.blogtalkradio.com/powerful-patient/2017/02/02/welcome-karen-gibsonHealthhttps://www.blogtalkradio.com/powerful-patient/2017/02/02/welcome-karen-gibson/#commentshttp://www.blogtalkradio.com/powerful-patient/2017/02/02/welcome-karen-gibsonThu, 02 Feb 2017 20:00:00 GMTWelcome, Karen Gibson!Joyce and Robin speak with Karen Gibson of Florida.  Karen shares her story of living with kidney cancer and working with others in her community to inspire them with hope. 00:47:00Powerful Patientnokidney cancer,survivor,cancer,patient advoca,patient advocacyKaren Gibson shares her story of living with kidney cancerhttps://www.blogtalkradio.com/powerful-patient/2017/01/26/mesothelioma-4-of-lung-cancerHealthhttps://www.blogtalkradio.com/powerful-patient/2017/01/26/mesothelioma-4-of-lung-cancer/#commentshttp://www.blogtalkradio.com/powerful-patient/2017/01/26/mesothelioma-4-of-lung-cancerThu, 26 Jan 2017 14:00:00 GMTMesothelioma ... 4% of lung cancerLung cancer affects more people than all the other prominent cancers combined.  We have all heard that lung cancer is usually caused by smoking.  But other causes are being understood -- causes that we can now avoid. Alison Grimes of the Mesothelioma and Asbestos Awareness Center (http://maacenter.org) speaks with Robin and Joyce about what we have learned about asbestos in the environment.   00:18:00Powerful Patientnomesothelioma,asbestos,lung cancerLung cancer affects more people than all the other prominent cancers combined. Mesothelioma is one form...4% of all lung cancerhttps://www.blogtalkradio.com/powerful-patient/2017/01/19/lung-cancer-and-moreHealthhttps://www.blogtalkradio.com/powerful-patient/2017/01/19/lung-cancer-and-more/#commentshttp://www.blogtalkradio.com/powerful-patient/2017/01/19/lung-cancer-and-moreThu, 19 Jan 2017 20:30:00 GMTLung Cancer and more Dr. Ross Camidge is an international expert in Lung Cancer.  Dr. Camidge speaks with Robin Martinez and Joyce Graff about his research, and what people need to know about lung cancer. His research covers the causes and potential treatments for lung cancer.  "If you were suddenly diagnosed tomorrow with diabetes, at no point would you say, 'Well, I've got to sell my house and put my affairs in order.'  You just go, 'Well, it's a pain in the butt, but I'll figure out a way of managing it.' "And it's that mindset that we're heading toward at least for some achievable goals within lung cancer." -- David Ross Camidge, MD, PhD He also recommends using palliative care as a partner in patient care, not as an alternative to clinical care.  In addition to drugs to treat lung cancer, helping the patient and family manage pain and stress is a great benefit toward overall well-being http://www.ucdenver.edu/academics/colleges/medicalschool/departments/medicine/MedicalOncology/faculty/Pages/DRossCamidge,MD.aspx     00:30:00Powerful Patientnolung cancer,palliative careWe speak with Dr. Ross Camidge about what people need to know about lung cancer.https://www.blogtalkradio.com/powerful-patient/2017/01/13/eradicating-polio-worldwide--the-challenge-the-opportunityHealthhttps://www.blogtalkradio.com/powerful-patient/2017/01/13/eradicating-polio-worldwide--the-challenge-the-opportunity/#commentshttp://www.blogtalkradio.com/powerful-patient/2017/01/13/eradicating-polio-worldwide--the-challenge-the-opportunityFri, 13 Jan 2017 21:00:00 GMTEradicating Polio Worldwide - the challenge, the opportunityThe Bill & Melinda Gates Foundation and Rotary International have partnered to end polio -- not just in the U.S. but worldwide and forever.  You can help. Dr. Jay Wenger, Director of Polio Eradication for the Gates Foundation, speaks with Cara Santa Maria Cara Santa Maria of Talk Nerdy speaks with the Director of polio eradication efforts for the Bill and Melinda Gates Foundation, Dr. Jay Wenger. They discuss the history of wild poliovirus, including its devastating medical effects, as well as the incredible success of the Global Polio Eradication Initiative. (Oral polio vaccination has reduced cases across the globe by 99.9% since 1988.) In addition, they focus on new cases in Nigeria, and why it is more important than ever to focus on final eradication efforts. To support the effort, visit www.endpolio.org. Follow Jay: @jay_wenger. Many thanks to Cara at http://carasantamaria.com   00:42:00Powerful Patientnopolio,Rotary Foundation,Gates Foundation,eradication,virusDr. Jay Wenger explains that we have a groundbreaking opportunity to remove the polio virus from the planet.https://www.blogtalkradio.com/powerful-patient/2017/01/12/powerful-patient-annual-reportHealthhttps://www.blogtalkradio.com/powerful-patient/2017/01/12/powerful-patient-annual-report/#commentshttp://www.blogtalkradio.com/powerful-patient/2017/01/12/powerful-patient-annual-reportThu, 12 Jan 2017 20:00:00 GMTPowerful Patient annual reportWhat has Powerful Patient been up to in 2016?  We took a hiatus from our regular broadcasts due to the press of other activities -- so what all have we been doing? Joyce shares her adventures and a quick update from Robin and Mike, and tells more about what we will be doing in 2017. New England Regional Genetics Group - http://www.nergg.orgPatient advocacy through Powerful Patient - http://powerfulpatient.orgInternational Kidney Cancer Coalition - http://ikcc.org Wishing everyone a happy and healthy 2017! 00:24:00Powerful PatientnoJoyce updates everyone on what Powerful Patient has been up to throughout 2016.https://www.blogtalkradio.com/powerful-patient/2017/01/05/helping-your-baby-with-metabolic-disordersHealthhttps://www.blogtalkradio.com/powerful-patient/2017/01/05/helping-your-baby-with-metabolic-disorders/#commentshttp://www.blogtalkradio.com/powerful-patient/2017/01/05/helping-your-baby-with-metabolic-disordersThu, 05 Jan 2017 20:00:00 GMTHelping your baby with metabolic disordersKrystye, a young mother in Maine, gave birth to a beautiful, long-for baby daughter.  Within days it was clear that something was wrong.  Krystye shares her experience with us -- how she worked with her doctors, advocated for her daughter, and found help for her daughter's rare condition. Our bodies are an intricate complex of delicate processes that take food in, break it down into tiny components, and pass those components into our cells.  Within the cells they are used to build the cell structure, create energy, store up energy for future use, and then dispose of the residues left from this processing. There are more than 60 enzymes involved in this processing.  When one or more of these enzymes is altered or missing, problems occur.  This group of diseases is called lysosomal storage diseases. Pompe disease is one of these disorders, causing accumulation of too much glycogen and causing muscle weakness, failure to thrive, and heart issues. 00:32:00Powerful Patientnopompe disease,metabolic disorders,lysosomal storage disease,GENETICSA young mother speaks with Joyce about learning that her beautiful baby has a metabolic disorder -- what that means and how to help.https://www.blogtalkradio.com/powerful-patient/2016/04/05/dealing-with-complex-disordersHealthhttps://www.blogtalkradio.com/powerful-patient/2016/04/05/dealing-with-complex-disorders/#commentshttp://www.blogtalkradio.com/powerful-patient/2016/04/05/dealing-with-complex-disordersTue, 05 Apr 2016 19:00:00 GMTDealing with Complex DisordersMedical conditions that affect organ systems in more than one medical specialty area are particularly hard to deal with.  Diagnosis, management, all are difficult because no single doctor understands the interworkings of the problems.  This leaves much to the patient to coordinate the information from more than one specialist. Julie Gortze of Mito New England is working with a team of doctors and Massachusetts General Hospital to assemble a team to help.  Joyce and Robin talk with Julie about this effort and about their forthcoming meeting, April 30 in South Attleboro, Massachusetts. http://www.nergg.org/wp-content/uploads/2016/03/MNE-April-2016.pdf 00:32:00Powerful Patientnomitochondrial disease,complex diseases,rare diseasesMedical conditions that cross medical specialties are particularly challenging for patients and their doctors. How to help?https://www.blogtalkradio.com/powerful-patient/2016/03/29/living-with-multiple-myelomaHealthhttps://www.blogtalkradio.com/powerful-patient/2016/03/29/living-with-multiple-myeloma/#commentshttp://www.blogtalkradio.com/powerful-patient/2016/03/29/living-with-multiple-myelomaTue, 29 Mar 2016 19:00:00 GMTLiving with Multiple MyelomaWhat does it mean to "empower" a patient?  Jack Aiello of San Jose, California is a leading patient-advocate in multiple myeloma. In January of 1995 Jack had a terrible backache. He was  diagnosed with multiple myeloma through a blood test.  Since that time Jack has had stem cell transplants that have brought him to remission, even if only for a short time.  Mr. Aiello's spirit remains high and to quote him "I certainly don't want anyone to feel bad for me. I consider myself extremely fortunate to be alive…have seen 2 daughters graduate with Master's and Bachelor's degrees, and my youngest son graduate from UCLA in 2006 in music education. One daughter does breast cancer research, another trains dolphins and my son teaches high school music. We've taken some wonderful family & friends vacations, and I'm getting more involved with some cancer organizations. I'm able to do volunteer work for the International Myeloma Foundation, Multiple Myeloma Research Foundation and the Leukemia & Lymphoma Society, all of whom provide research dollars and education programs for Multiple Myeloma." 00:34:00Powerful Patientnomultiple myeloma,cancer,patient engagementJack Aiello has been living with multiple myeloma since 1995. Joyce and Robin talk with him about patient empowerment.https://www.blogtalkradio.com/powerful-patient/2016/03/23/shortening-the-time-to-treatment-1Healthhttps://www.blogtalkradio.com/powerful-patient/2016/03/23/shortening-the-time-to-treatment-1/#commentshttp://www.blogtalkradio.com/powerful-patient/2016/03/23/shortening-the-time-to-treatment-1Wed, 23 Mar 2016 13:00:00 GMTShortening the time to treatmentRobin and Joyce speak with Zoe Barry, Founder and CEO of ZappRx, a secure collaborative online platform that allows patients, physicians and pharmacists to work together to improve patients’ access to treatment for rare and orphan diseases. Barry’s younger brother was diagnosed with severe epilepsy. She became witness to the real struggles facing patients and caregivers in such situations. Due to delays (on average, patients wait 6-8 weeks to receive therapy) in acquiring proper medication and therapy, Barry and her parents saw his condition worsen and lead to other problems, such as learning disabilities. As Barry dug deeper, she realized this problem was not unique to her family. “I became obsessed with prescription workflows,” she told me. “I couldn’t escape it.” After leaving her job at Athena Health, Barry raised friends and family funding and focused on creating a platform to close gaps between doctors, patients and pharmacists. 00:29:00Powerful PatientnoSpecialty PharmacyRobin and Joyce speak with Zoe Barry of ZappRx, a secure online platform allowing patients, physicians and pharmacists to improve patients’ access to treatment.https://www.blogtalkradio.com/powerful-patient/2016/02/23/smart-patients-are-in-touch-with-smartpatientsHealthhttps://www.blogtalkradio.com/powerful-patient/2016/02/23/smart-patients-are-in-touch-with-smartpatients/#commentshttp://www.blogtalkradio.com/powerful-patient/2016/02/23/smart-patients-are-in-touch-with-smartpatientsTue, 23 Feb 2016 23:00:00 GMTSmart patients are in touch with SmartPatientsJoyce and Robin talk with Dr. Roni Zeiger, CEO of SmartPatients, about the resources for cancer patients available through SmartPatients.com About Smart Patients Smart Patients is an online community for motivated patients and their families and friends. Here you can learn at your own level about scientific developments related to your condition, share your questions and concerns with other members, and use what you learn in the context of your own life. We believe patients are the most underutilized resource in healthcare. We've watched patients become experts in their conditions — and we see that their knowledge improves the care they receive. With the right tools, you and other patients can do the same. The Founders Smart Patients was founded by Gilles Frydman and Roni Zeiger. Gilles has been a pioneer of online health communities since founding the Association of Cancer Online Resources (ACOR) in 1995. Roni is the former Chief Health Strategist at Google, is a part time urgent care doctor, and has been building health software for the last 10 years. Both believe that the next tipping point in medicine includes tapping into the knowledge created by networks of engaged patients. 00:42:00Powerful Patientnocancer,cancer survivor,cancer educationJoyce and Robin talk with Dr. Roni Zeiger about the resources for cancer patients available through SmartPatientshttps://www.blogtalkradio.com/powerful-patient/2016/02/16/affordable-medical-technologies-for-the-worldHealthhttps://www.blogtalkradio.com/powerful-patient/2016/02/16/affordable-medical-technologies-for-the-world/#commentshttp://www.blogtalkradio.com/powerful-patient/2016/02/16/affordable-medical-technologies-for-the-worldTue, 16 Feb 2016 20:00:00 GMTAffordable medical technologies for the worldAn Event to spur innovative medtech solutions for pressing challenges around oncology prevention, diagnostics and care will be held February 27-28, 2016, in Boston. TheConsortium for Affordable Medical Technologies (CAMTech), Global Oncology, and the MGH Cancer Center will hold a Global Cancer Innovation Hack-a-thon to catalyze affordable medical technology, business models and process innovations to transform cancer prevention, diagnosis, and care in resource-limited settings.  In the U.S. we know that cancer treatment is expensive and is not always successful.  If cancers are found at early stages, they are more likely to be treated successfully.  In the U.S. and Europe, the stage at which cancers are found is going down: instead of finding cancers only when they are symptomatic and have likely already spread (stages 3-4), they are more often found at early stages, often because the person is getting a scan for something else, and the cancer is spotted on the scan (“incidental findings” of tumors at stages 1-2). In the developing world, however, where most of the world’s population lives, cancers are still found most often at stages 3-4, when treatment is much more expensive and hazardous.  And the truth is, the health care systems in these countries are not prepared to deal with late-stage cancer treatments. The Consortium for Global Health at the Massachusetts General Hospital is working to shift that paradigm through this special event, which will soure innovative solutions for pressing challenges around oncology prevention, diagnostics and care. While applications for the event have closed, CAMTech encourages you to follow @CAMTechMGH on Twitter and visit the event FAcebook page for live updates, discussions on specific cancer-related challenges, and highlights from the amazing cancer-related medical technologies that come out of the Hack-a-thon.   00:30:00Powerful Patientnomedical technology,medicine,global healthAn Event to spur innovative medtech solutions for pressing challenges around oncology prevention, diagnostics and care will be held February 27-28, 2016, in Boshttps://www.blogtalkradio.com/powerful-patient/2016/01/19/help-wanted--adoptive-parents-for-children-in-foster-careHealthhttps://www.blogtalkradio.com/powerful-patient/2016/01/19/help-wanted--adoptive-parents-for-children-in-foster-care/#commentshttp://www.blogtalkradio.com/powerful-patient/2016/01/19/help-wanted--adoptive-parents-for-children-in-foster-careTue, 19 Jan 2016 20:00:00 GMTHelp Wanted - Adoptive Parents for children in Foster Care Diane Tomaz of the Massachusetts Adoption Resources Exchange (MARE) talks about adoption and the needs of the children waiting in foster care. Many of these children have special needs.  Addy is a good example. Addy is a 4-year-old Caucasian girl who continues to make tremendous progress in her growth and development. Addy has some developmental delays and a genetic condition called Micro-duplication syndrome, which can present as having Autism like symptoms and behavioral challenges. She will need to be formally re-evaluated in the future to determine if she still falls on the Autism spectrum due to the tremendous progress she has made. Addy attends pre-school with the support of an Individualized Educational Plan. She is no longer in a self-contained classroom due to the gains she has made and she is now in an integrated preschool program. Addy’s speech has also increased and she continues to receive speech therapy at school to assist with her speech delays. Legally freed for adoption, Addison will need a family that is prepared for her needs and the unknowns that come with it. A family that has parenting experience would be preferred. Addison will need a family that is able to keep her in contact with her younger sister and grandmother with four to six visits a year. She also has an open adoption agreement with her birth mother for post-adoption visits. 00:25:00Powerful PatientnoDiane Tomaz of the Massachusetts Adoption Resources Exchange (MARE) talks about adoption and the needs of the children waiting in foster care. Many of thesehttps://www.blogtalkradio.com/powerful-patient/2016/01/12/patient-information--new-info-for-vhlHealthhttps://www.blogtalkradio.com/powerful-patient/2016/01/12/patient-information--new-info-for-vhl/#commentshttp://www.blogtalkradio.com/powerful-patient/2016/01/12/patient-information--new-info-for-vhlTue, 12 Jan 2016 20:00:00 GMTPatient Information - new info for VHL There are many challenges common to all rare diseases: 1. How to get a correct diagnosis? 2. How to find doctors who understand the condition and can provide therapeutic help. 3. How to manage day to day, making choices and getting medical help to moderate the symptoms and maximize one's quality of life. The VHL Alliance assembled its first collection of guidelines for patients and their general doctors in 1993, and has been evolving it regularly since then as new information has emerged.  This is now one of the best established Handbooks for a rare disease -- now in its 5th edition, and translated into 15 languages. Joyce and Robin speak with Suzanne Nylander, O.D., editor of the 5th edition, about what's new in the Handbook, how the Handbook helps both patients and doctors, and what they have learned about the power of sharing information -- among patients and among physicians and healthcare systems worldwide. Hard copies are available for purchase from the Alliance or from Amazon.com.  You can download the text for free at http://vhl.org/handbook. 00:32:00Powerful PatientnoVHL,von Hippel-Lindau,kidney cancer,pheochromocytoma,retinal angiomasThere are many challenges common to all rare diseases: 1. How to get a correct diagnosis? 2. How to find doctors who understand the condition and can prohttps://www.blogtalkradio.com/powerful-patient/2015/12/08/who-is-listening-to-the-patient-voiceHealthhttps://www.blogtalkradio.com/powerful-patient/2015/12/08/who-is-listening-to-the-patient-voice/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/12/08/who-is-listening-to-the-patient-voiceTue, 08 Dec 2015 20:00:00 GMTWho is Listening to the Patient Voice?Robin and Joyce speak with Lesley Bennett, state coordinator for the National Organization for Rare Disorders (NORD) in Connecticut, about the importance of the voice of the "consumer" in healthcare as in retail or other "marketing" relationships. Joyce and Lesley recently attended the annual meeting of the New England Regional Genetics Group (NERGG) in Portsmouth, New Hampshire.  What role should consumers play in a professional organization?  NERGG has included consumers in its governance for the past 38 years, and yet they are still struggling to define a clear role for consumers in the workings of the organization. What do consumers want? How can organizations work with them to include them in constructive ways? Who is Listening to the Patient Voice? Patients and the regulatory process - appraisal, approval, access issuesPatient involvement in clinical trials -  design, recruitment and retentionPatient involvement in the design of hospital cancer servicesThe patient voice in kidney cancer guidelines/pathways00:31:00Powerful PatientnoLesley Bennett, state coordinator for NORD in Connecticut, speaks about the role of the consumer in medical organizations.https://www.blogtalkradio.com/powerful-patient/2015/12/01/should-i-go-to-patient-support-conferenceHealthhttps://www.blogtalkradio.com/powerful-patient/2015/12/01/should-i-go-to-patient-support-conference/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/12/01/should-i-go-to-patient-support-conferenceTue, 01 Dec 2015 20:00:00 GMTShould I go to Patient Support conference?What happens at a patient support conference? Is it worthwhile to go, or will it be stressful?  Carla talks with Robin and Joyce about her own recent experience.  Carla applied to the New England Regional Genetics Group (http://www.nergg.org) for an A. Merrill Henderson scholarship to attend a patient support conference.  This grant enabled her to attend and learn.    00:30:00Powerful PatientnoWhat happens at a patient support conference? Is it worthwhile to go, or will it be stressful? Carla talks about her recent experience.https://www.blogtalkradio.com/powerful-patient/2015/11/24/patients-and-physicians-network-about-kidney-cancerHealthhttps://www.blogtalkradio.com/powerful-patient/2015/11/24/patients-and-physicians-network-about-kidney-cancer/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/11/24/patients-and-physicians-network-about-kidney-cancerTue, 24 Nov 2015 20:00:00 GMTPatients and Physicians Network about Kidney CancerThe annual Kidney Cancer Symposium was held this year in Miami, Florida.  It was chaired by Dr. Toni Choueiri of Dana-Farber/Harvard Cancer Institute in Boston, and contained a wealth of information for physicians, both urologists and oncologists dealing with kidney cancer. This year for the first time in many years more patients and patient advocates were included in the mix.  In the past Joyce has been one of 4-5 patients invited to help report the meeting, under the general editorship of Mike Lawing.  This year, in part to celebrate the 25th anniversary oCaleb f the founding of KCA by a kidney cancer patient, more patients were invited to attend, including two from outside the United States: Caleb from Nigeria and Juanita Ruiz from Peru. Billy Foster, a long-time KCA supporter and jazz musician, was on hand to provide wonderful music for the reception.  He has given us permission to broadcast an interview he recorded with Caleb Egwuenu, founder and president of Stand Up to Cancer Naija, http://www.su2c9ja.org  In Nigeria many people still believe that cancer is "juju" or some harmful magical power inflicted by someone else, or as a result of something you did wrong.  The biggest challenge to managing any cancer is that diagnoses are usually after the cancer is already advanced to a late stage.  For Nigeria as for most developing countries, the management of late stage cancer is beyond the skills and budgets of the health care systems.  Their only hope of managing cancer is to find it at early stages. Billy's jazz music show can be found at http://billfosterjazzzone.com   00:29:00Powerful Patientnocancer survivor,kidney cancer,cancer in emerging nations,cancer controlThe Kidney Cancer Association's annual symposium for physicians included more patients this year, adding a rich dimension to the affair.https://www.blogtalkradio.com/powerful-patient/2015/11/10/why-one-third-of-hospitals-will-close-by-2020Healthhttps://www.blogtalkradio.com/powerful-patient/2015/11/10/why-one-third-of-hospitals-will-close-by-2020/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/11/10/why-one-third-of-hospitals-will-close-by-2020Tue, 10 Nov 2015 20:00:00 GMTWhy One-Third of Hospitals will Close by 2020David Houle and Jonathan Fleece are co-authors of the book The New Health Age: The Future of Health Care in America.  Three years ago they co-authored a provocative short blog post in KevinMD, predicting that by 2020 one-third of American hospitals would close.  http://www.kevinmd.com/blog/2012/03/onethird-hospitals-close-2020.html They pointed to four factors for this: First, America must bring down its crippling healthcare costs, and hospitals are one of the most expensive components of the system.Second, statistically speaking hospitals are just about the most dangerous places to be in the United States. Three times as many people die every year due to medical errors in hospitals as die on our highways.Third, hospital customer service is abysmal. Where else do you have to wait four hours for service?Fourth, health care reform will make connectivity, electronic medical records, and transparency commonplace in health care, and customers will be able to do some comparison shopping for the first time. We have invited them to speak with us about how we are doing along that path.  Have hospitals taken notice and changed their ways? or are we still on a timeline toward closure of one-third of American hospitals?  And if that is true, how will we receive our care in the new age? David Houle is a futurist, advisor and speaker and Jonathan Fleece is a health care attorney, advisor, and speaker.     00:31:00Powerful Patientnohospital care,ACA,Healthcare in America,Obamacare,patient safetyDespite a history of strength and stature in America, the hospital institution is in the midst of massive and disruptive change. Such change will be so transforhttps://www.blogtalkradio.com/powerful-patient/2015/11/02/strengthening-the-mind-body-connectionHealthhttps://www.blogtalkradio.com/powerful-patient/2015/11/02/strengthening-the-mind-body-connection/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/11/02/strengthening-the-mind-body-connectionMon, 02 Nov 2015 20:00:00 GMTStrengthening the Mind-Body ConnectionAlison J Kay, PhD, speaks with Robin and Joyce about the melding of Asian and Western philosophies and medical cultures that she feels optimizes our ability to live fully in today's busy world. Have you been feeling like life has become less? Less reliable, safe, and stable? Are you looking for more from life? More authenticity, more hope, more meaning, more health, more love, more feeling safe and/or more calm in your life? You’re not alone. There are external factors causing these feelings. Alison wrote her book What if There’s Nothing Wrong? during the last year of her 10 years living and working in Asia.  She left the U.S. two months before 9/11/2001, and returned two years into Obama’s first administration.  She has written this book to bring to Americans the subtle energy practices used in Asia which she feels will help Americans create vibrantly healthy, happy lives. For a taste of her practice, see http://alisonjkay.com/group-sessions/ 00:31:00Powerful Patientnohealing energy,Mind/Body connection,Energy WorkDr. Alison Kay talks about the Asian energy practices she feels will help Americans create vibrantly healthy, happy lives.https://www.blogtalkradio.com/powerful-patient/2015/10/27/the-impact-of-social-media-on-healthcareHealthhttps://www.blogtalkradio.com/powerful-patient/2015/10/27/the-impact-of-social-media-on-healthcare/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/10/27/the-impact-of-social-media-on-healthcareTue, 27 Oct 2015 15:00:00 GMTThe Impact of Social Media on HealthcareDr..Paula C. Goldenberg, a geneticist at Massachusetts General Hospital in Boston, has been holding a new kind of "clinic" -- online, in Facebook -- since last July.  In a mere four months she has gathered 2200 followers worldwide. Dr. Goldenberg shares her excitement about the use of social media in reaching and empowering people affected by rare conditions, helping them to find better care and improve their quality of life Hear her conversation with Robin and Joyce about the powerful role social media can play in providing healthcare information. Dr. Paula Goldenberg is a medical genetics doctor in Boston, Massachusetts and is affiliated with Massachusetts General Hospital. She received her medical degree from Oregon Health & Science University School of Medicine and has been in practice for 12 years. Dr. Goldenberg accepts several types of health insurance, listed below. She is one of 11 doctors at Massachusetts General Hospital who specialize in Medical Genetics. 00:31:00Powerful PatientnoDr. Paula Goldenberg talks with Robin and Joyce about her social media "clinic" on Facebook.https://www.blogtalkradio.com/powerful-patient/2015/10/20/medical-imaging--radiation-safety-and-qualityHealthhttps://www.blogtalkradio.com/powerful-patient/2015/10/20/medical-imaging--radiation-safety-and-quality/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/10/20/medical-imaging--radiation-safety-and-qualityTue, 20 Oct 2015 19:00:00 GMTMedical Imaging - Radiation Safety and QualityJoyce Graff recently attended the Second Global Summit on Radiological quality and Safety (GSRQS).  Fifty-two leaders of radiological services from countries on five continents participated in the meeting.  Joyce was the sole patient advocate present. Joyce and Robin talk about the outcome of the meeting and the general topic of medical imaging -- its value and its cautions. Interested in how much radiation we get from different sources?  See http://www.powerfulpatient.org/medical-imaging   00:31:00Powerful Patientnomedical imaging,computed tomography,ct,image-guided surgeryMedical imaging is a critically valuable tool in diagnosing and treating disease. What progres is being made on safety and quality?https://www.blogtalkradio.com/powerful-patient/2015/10/06/deb-maskens-on-esmo-and-immuno-oncologyHealthhttps://www.blogtalkradio.com/powerful-patient/2015/10/06/deb-maskens-on-esmo-and-immuno-oncology/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/10/06/deb-maskens-on-esmo-and-immuno-oncologyTue, 06 Oct 2015 19:00:00 GMTDeb Maskens on ESMO and Immuno-OncologyDeb Maskens was diagnosed at the age of 14 with papillary renal cell carcinoma.  Now with adult children of her own, she has been living most of her life on one clinical trial or another, working to control the growth of tumors and to maintain her quality of life.  She helped to form Kidney Cancer Canada, and the International Kidney Cancer Coalition (IKCC), sharing her experience and knowledge with other kidney cancer patients around the world. In September 2015 she attended the European Society for Medical Oncology (ESMO) meeting in Vienna and filed this report, which Joyce and Robin will be discussing with her. https://kidneycancercanada.wordpress.com/ In addition, she is part of a team at the International Kidney Cancer Coalition which has recently opened an informational website on Immuno-Oncology.  Hopes are high for this new angle on controlling cancer, but how much of the hype is yet real? Listen to the conversation and check out http://www.10forIO.info   00:31:00Powerful PatientnoHopes are high that immuno-oncology, will control cancer -- but how much of the hype is yet real? Deb Maskens talks about ESCO and 10-for-IO.https://www.blogtalkradio.com/powerful-patient/2015/09/29/world-congress-patient-engagement-summithttp://www.worldcongress.com/events/HL15021/ Nancy is a journalist and author who blogs regularly.  Her book, "E-Patients Live Longer," was the subject of a previous interview on Powerful Patient.  See http://www.powerfulpatient.org/e-patients-live-longer See more about Nancy Finn at http://www.amazon.com/Nancy-B.-Finn/e/B001KI6XY8 See more about the Society for Participatory Medicine at http://participatorymedicine.org/ ]]>http://www.worldcongress.com/events/HL15021/ Nancy is a journalist and author who blogs regularly.  Her book, "E-Patients Live Longer," was the subject of a previous interview on Powerful Patient.  See http://www.powerfulpatient.org/e-patients-live-longer See more about Nancy Finn at http://www.amazon.com/Nancy-B.-Finn/e/B001KI6XY8 See more about the Society for Participatory Medicine at http://participatorymedicine.org/ ]]>Healthhttps://www.blogtalkradio.com/powerful-patient/2015/09/29/world-congress-patient-engagement-summit/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/09/29/world-congress-patient-engagement-summitTue, 29 Sep 2015 19:00:00 GMTWorld Congress Patient Engagement Summithttp://www.worldcongress.com/events/HL15021/ Nancy is a journalist and author who blogs regularly.  Her book, "E-Patients Live Longer," was the subject of a previous interview on Powerful Patient.  See http://www.powerfulpatient.org/e-patients-live-longer See more about Nancy Finn at http://www.amazon.com/Nancy-B.-Finn/e/B001KI6XY8 See more about the Society for Participatory Medicine at http://participatorymedicine.org/ ]]>Joyce Graff and Nancy Finn recently participated on a panel on Patient Engagement.  The conference was oriented toward staff of hospitals and insurance companies, working to engage their patients, designing procedures and systems that give the patients access to key information from their electronic health records, and to form a more productive partnership with their healthcare providers. Robin and Joyce speak with Nancy Finn to recap the experience of the conference, and to speak more in depth about patient engagement in their own healthcare. See the conference program at <a href="http://www.worldcongress.com/events/HL15021/">http://www.worldcongress.com/events/HL15021/</a> Nancy is a journalist and author who blogs regularly.  Her book, "E-Patients Live Longer," was the subject of a previous interview on Powerful Patient.  See <a href="http://www.powerfulpatient.org/e-patients-live-longer">http://www.powerfulpatient.org/e-patients-live-longer</a> See more about Nancy Finn at <a href="http://www.amazon.com/Nancy-B.-Finn/e/B001KI6XY8">http://www.amazon.com/Nancy-B.-Finn/e/B001KI6XY8</a> See more about the Society for Participatory Medicine at <a href="http://participatorymedicine.org/">http://participatorymedicine.org/</a> 00:31:00Powerful Patientnopatient engagement,advocating for yourselfRobin and Joyce speak with Nancy Finn to recap the experience of the conference, and to speak more in depth about patient engagement in their own healthcare.https://www.blogtalkradio.com/powerful-patient/2015/09/22/our-diagnostic-odysseyHealthhttps://www.blogtalkradio.com/powerful-patient/2015/09/22/our-diagnostic-odyssey/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/09/22/our-diagnostic-odysseyTue, 22 Sep 2015 19:00:00 GMTOur Diagnostic OdysseyPatricia Weltin of Rhode Island and her two daughters have had a difficult time achieving an accurate diagnosis for her daughters' medical issue. An accurate diagnosis is essential before a helpful treatment plan can be devised. Without an accurate diagnosis, any treatment attempted is a shot in the dark. Well-meaning medical professionals may make educated guesses as to how to proceed, and often that instinct is all that exists to guide us. However, with advances in medical diagnostics and genetic testing, there are new ways to pinpoint the underlying problem. Joyce and Robin speak with Patty about this one journey and what she has learned from this experience that might be helpful to the next family going through such a process. See also http://rarediseaseunited.org/ 00:31:00Powerful Patientnodiagnosis,genetic testingJoyce and Robin speak with Patricia Weltin about her difficult road to diagnosis for her daughters, and what she has learned that can help others.https://www.blogtalkradio.com/powerful-patient/2015/09/15/plugging-the-gaps-in-health-carehttp://churchhealthcenter.org ]]>http://churchhealthcenter.org ]]>Healthhttps://www.blogtalkradio.com/powerful-patient/2015/09/15/plugging-the-gaps-in-health-care/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/09/15/plugging-the-gaps-in-health-careTue, 15 Sep 2015 19:00:00 GMTPlugging the Gaps in Health Carehttp://churchhealthcenter.org ]]>In the United States we are privileged to have some of the best medical care facilities in the world, and some of the most talented physicians.  But not everyone in the United States is able to access these services.  What we are working to improve through the Affordable Care Act (ACA, sometimes referred to as Obamacare) is access to that care, and moving from a system that focuses on fixing medical problems, to a system and a mindset that focuses on PREVENTING medical problems. Memphis, Tennessee, is an interesting case in point.  In Memphis, some 20% of the population has incomes below the poverty line, and a very high percentage among the "working poor."  Some qualify for Medicaid, but many do not.  People who are uninsured or "under-insured" often find themselves in need of medical care that they cannot afford.  One serious illness or automobile accident can easily bankrupt the household. Church Health Center has worked for many years to help fill the gaps in health care in Memphis.  Robin and Joyce speak with Jeff Hulett of Church Health Center about their work.  With the ACA their role is changing, but their work is by no means done.  See more at <a href="http://churchhealthcenter.org">http://churchhealthcenter.org</a> 00:32:00Powerful Patientnoaccess to health care,uninsured,under-insuredJoyce and Robin speak with Jeff Hulett about the work of Church Health Center to help fill the gaps in health care in Memphis.https://www.blogtalkradio.com/powerful-patient/2015/09/09/reducing-infant-mortality-in-the-united-statesHealthhttps://www.blogtalkradio.com/powerful-patient/2015/09/09/reducing-infant-mortality-in-the-united-states/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/09/09/reducing-infant-mortality-in-the-united-statesWed, 09 Sep 2015 19:30:00 GMTReducing Infant Mortality in the United StatesWhat can we do to lower the incidence of infant deaths? Joyce and Robin speak with Dr. Robert Ford, a retired obstetrician/gynecologist (OB/GYN) from West Memphis, Arkansas, now living in Memphis, Tennessee. Dr. Ford shares his insights into this problem, which is highest in the Southern states. Unfortunately, about 24,000 infants died in the United States in 2011. The loss of a baby remains a sad reality for many families and takes a serious toll on the health and well-being of families, as well as the nation. The death of a baby before his or her first birthday is called infant mortality. The infant mortality rate is an estimate of the number of infant deaths for every 1,000 live births. This rate is often used as an indicator to measure the health and well-being of a nation, because factors affecting the health of entire populations can also impact the mortality rate of infants. There are obvious differences in infant mortality by age, race, and ethnicity; for instance, the mortality rate for non-Hispanic black infants is more than twice that of non-Hispanic white infants. Fortunately, most newborns grow and thrive. However, for every 1,000 babies that are born, six die during their first year. Most of these babies die because they are— Born with a serious birth defectBorn too small and too early (i.e., preterm birth; birth before 37 weeks gestation).Victims of Sudden Infant Death Syndrome (SIDS).Affected by maternal complications of pregnancy.Victims of injuries (e.g., suffocation). These top five leading causes of infant mortality together account for 58% of all infant deaths in the United States in 2011. Infant mortality rate for children in the poorest 20% urban households is about twice as high as that among children in the richest 20% urban households, globally. 00:31:00Powerful Patientnoinfant mortality,prenatal careWhat can we do to lower the incidence of infant deaths? Dr. Robert Ford, a retired OB/GYN from W Memphis, AR, now living in Memphis TN, shares his insights.https://www.blogtalkradio.com/powerful-patient/2015/09/02/travel-insurance-for-people-with-medical-issuesHealthhttps://www.blogtalkradio.com/powerful-patient/2015/09/02/travel-insurance-for-people-with-medical-issues/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/09/02/travel-insurance-for-people-with-medical-issuesWed, 02 Sep 2015 16:00:00 GMTTravel insurance for people with medical issues Joyce and Robin speak with Dr. Patty Calvert, an agent with Travel Experts of Memphis, Tennessee, about travel insurance. Robin raised the question because in her dealings with people who have kidney cancer, there were too many stories of illness during travel and being let down by the travel insurance they thought they had had for emergencies. Patty designs adventure travel for her clients, and has experience in making sure that in case of emergencies abroad, there will be an appropriate backup system in place. For more information on Patty and her practice, see http://www.travel-xperts.com/Patty-Calvert/ There are also lots of good resources listed at http://www.virtuoso.com Join us live, or submit questions in advance to joyce@powerfulpatient.org     00:31:00Powerful PatientnoJoyce and Robin speak with Dr. Patty Calvert, an agent with Travel Experts of Memphis, Tennessee, about travel insurance. Robin raised the question becausehttps://www.blogtalkradio.com/powerful-patient/2015/08/18/adolescent-wellnessHealthhttps://www.blogtalkradio.com/powerful-patient/2015/08/18/adolescent-wellness/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/08/18/adolescent-wellnessTue, 18 Aug 2015 19:00:00 GMTAdolescent WellnessBob Anthony has created an adolescent wellness program to help teens find and maintain emotional balance, and to prevent teen suicides. The program was developed in conjunction with the Rotary Club of Wellesley, Massachusetts, and three local hospitals. See http://adolescentwellness.org For programs and exercises for younger children, see http://wellness.whyville.net To find a Rotary Club in your area, please see http://rotary.org and look on the top line menu for "Club Finder". The 4-way Test mentioned during the program is as follows: For everything you think or say or do, ask yourself these four questions: 1. Is it the TRUTH?   2. Is it FAIR to All Concerned? 3. Will it Build GOODWILL and Better Friendships? 4. Will it Be BENEFICIAL to All Concerned? 00:29:00Powerful Patientnomental illness,teen suicide,emotional balance,managing stressBob Anthony has created an adolescent wellness program to help teens find emotional balance and prevent suicide.https://www.blogtalkradio.com/powerful-patient/2015/08/12/aging-at-home-or-accommodating-our-limitationsHealthhttps://www.blogtalkradio.com/powerful-patient/2015/08/12/aging-at-home-or-accommodating-our-limitations/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/08/12/aging-at-home-or-accommodating-our-limitationsWed, 12 Aug 2015 16:00:00 GMTAging at Home, or Accommodating our LimitationsRobert Kaplan of "OK 2 Age at Home" speaks with Robin and Joyce about modifications that can be made to one's home to make it safer for yourself, for an aging parent, or for anyone with a disability. Our abilities change as we get older.  Sometimes it is difficult to accept that our capabilities have changed, and to accept and face the "new normal."  The most important thing it to avoid falling.  The older we are, the more serious an injury a fall can create -- falling out of bed, falling on the steps, or in the bathroom.  There are a number of modifications that can be made -- in ways that can enhance the value of the home -- that can make it safer and more realistic to remain at home. We need first to consider: is this the place where I want to be?  Is it accessible to grocery store and services? to social activities? or would it in fact be better to move? If it's the right place to be, then is it possible to live on one floor? or to add a stair lift?  Is it safe to get into the home? Should we add railings or a ramp? Is the bathroom safe?  Would it be wise to add grab bars, a shower seat, or a bathtub seat where you can sit first and swing your legs into the tub?  Is the floor too slippery? We discuss these issues and more on the Powerful Patient 00:31:00Powerful Patientnoaging,disability,adaptationRobert Kaplan of "OK 2 Age at Home" speaks with Robin and Joyce about modifications that can be made to one's home to make it safer for yourself, for an aging phttps://www.blogtalkradio.com/powerful-patient/2015/08/06/welcome-robin-martinezHealthhttps://www.blogtalkradio.com/powerful-patient/2015/08/06/welcome-robin-martinez/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/08/06/welcome-robin-martinezThu, 06 Aug 2015 19:00:00 GMTWelcome Robin MartinezMike Lawing has retired from Powerful Patient.  We wish him well in his new endeavors. Mike and Joyce welcome Robin Martinez as the new co-host of Powerful Patient.  Robin and Joyce talk about some of their new ideas and directions for the show and the advocacy efforts of Powerful Patient Inc. We hope that you will join us in welcoming Robin, in shaping the show, and in being a Powerful Patient. 00:31:00Powerful Patientnokidney cancer,rare diseases,GENETICSMike Lawing has retired from Powerful Patient. We wish him well in his new endeavors. Mike and Joyce welcome Robin Martinez as the new co-host of Powerful Pathttps://www.blogtalkradio.com/powerful-patient/2015/04/14/cari-cornish-and-special-education-lawHealthhttps://www.blogtalkradio.com/powerful-patient/2015/04/14/cari-cornish-and-special-education-law/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/04/14/cari-cornish-and-special-education-lawTue, 14 Apr 2015 18:00:00 GMTCari Cornish and Special Education LawCarin J. Cornish is an attorney.  She specializes in Special Education Law -- not the most lucrative specialty in law practice, but one which she find extremely rewarding in other ways.  All children have their own ways of learning, not all of which fit neatly into mainstream classrooms.  Cari is committed to helping to create the right nurturing environment for every special child.  She works through the Children's Law Center of Massachusetts. Cari talks with Joyce about the path that has led her to this specialty, and to her work with the New England Regional Genetics Group (NERGG). Sanfilippo syndrome was first described in 1963 by Dr. Sylvester Sanfilippo and is considered rare, with an occurrence of 1 in every 70,000 births. It is an autosomal recessive hereditary disorder, which means, both parents must be carriers in order for the child to be affected. There is a one in four chance of having a child born with Sanfilippo syndrome. There is a two in three chance that unaffected children will be carriers. 00:31:00Powerful PatientnoSanfilippo syndrome,genetic disease,recessive gene,special education,IEPCarin J. Cornish is an attorney.  She specializes in Special Education Law -- not the most lucrative specialty in law practice, but one which she find extremelyhttps://www.blogtalkradio.com/powerful-patient/2015/04/09/ellen-matloff-and-mygenecounselHealthhttps://www.blogtalkradio.com/powerful-patient/2015/04/09/ellen-matloff-and-mygenecounsel/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/04/09/ellen-matloff-and-mygenecounselThu, 09 Apr 2015 19:00:00 GMTEllen Matloff and MyGeneCounselJoyce speaks with Ellen Matloff, genetic counselor, about her newest venture, MyGeneCounsel.  Ellen Matloff, MS, CGC is the President and CEO of My Gene Counsel. Ellen is the founder and former director of the Cancer Genetic Counseling Program at Yale School of Medicine and a lead plaintiff in the 2013 United States Supreme Court gene patent case. Ellen has authored more than 50 scientific publications in the field, is an established educator, lecturer and media spokesperson and has received national awards for her ongoing patient advocacy efforts. She was the 2013 honoree of ArtBra New Haven for her work with hereditary breast cancer, and particularly for helping to challenge the validity of patenting the genes for breast cancer. Ellen’s area of special interest is BRCA I and BRCA II mutations, which vastly increase the probability of a carrier developing breast and/or ovarian cancer. For the past 18 years, she has been dedicated to patient and provider issues in cancer genetic counseling, and the impact of genetic patents on patients and clinical practice. Ellen was one of the lead plaintiffs in Association of Molecular Pathology v. Myriad Genetics, the landmark case before the U.S. Supreme Court, which challenged the validity of patenting naturally-occurring substances from the human body. Myriad Genetics had patented the BRCA I and II genes, and held the monopoly on testing. This effectively froze research, and made necessary testing unaffordable for many patients, leaving them to make huge decisions about their treatment without vital information. Ellen worked tirelessly for the interests of breast cancer patients and their families.  00:31:00Powerful PatientnoGENETICS,brca1,brca2Joyce speaks with Ellen Matloff, genetic counselor, about her newest venture, MyGeneCounsel.https://www.blogtalkradio.com/powerful-patient/2015/04/02/oxalate-autism-and-moreHealthhttps://www.blogtalkradio.com/powerful-patient/2015/04/02/oxalate-autism-and-more/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/04/02/oxalate-autism-and-moreThu, 02 Apr 2015 19:00:00 GMTOxalate, Autism and more"Oxalate is an antinutrient that is present at higher levels in some plant foods like spinach, nuts, and chocolate, but it is also a mitochondrial toxin and neurotoxin, and impairs calcium and iron regulation, all biotin-dependent enzymes, and many other enzymes." — Susan Costen Owens Susan Costen Owens has lectured widely, both nationally and internationally. This graduate of Vanderbilt University with a masters degree in Interdisciplinary Studies from the University of Texas in Dallas has fifteen years of experience in autism research. She realized six years ago that the gut inflammation and leaky gut in autism and other developmental disorders would lead to increased absorption of oxalate from the diet with unknown consequences. Through her project at the Autism Research Institute, this diet has led to the loss of the autism diagnosis in some children and improvements in pain, cognition, growth, motor skills, gastrointestinal function, and social interaction in countless others. Her internet group, Trying Low Oxalates has grown to more than 3000 people, including those with celiac disease, cystic fibrosis, myotonic dystrophy, Rett syndrome, MHE, bariatric surgery, short bowel syndrome, chronic pain syndromes like fibromyalgia, vulvodynia and bone pain, chronic fatigue, autoimmune conditions, and many other conditions, taking the study of oxalate’s relationship to disease far beyond the familiar turf of kidney stone disease. 00:31:00Powerful Patientnoautism,fibromyalgia,autoimmune conditions,developmental disabilities,chronic fatigue syndrome"Oxalate is an antinutrient that is present at higher levels in some plant foods like spinach, nuts, and chocolate, but it is also a mitochondrial toxin and neuhttps://www.blogtalkradio.com/powerful-patient/2015/03/26/cancer-in-families--lynch-syndromeihavelynchsyndrome.com. She frequently writes about the emotional aspects of having Lynch syndrome, and writes for various websites and journals in order to create awareness amongst the global medical community about this hereditary cancer syndrome. Georgia is a wife and mother, and loves espresso, books, and being bossed around by her adorable dog named Sid. What is Lynch syndrome?  We will learn more from Georgia, or you can read about it on her website, or in this article from www.curetoday.com Georgia noticed that there were several people in her family who had cancer at early ages, and several with the same cancer.  This can indicate that there is something genetic predisposing family members to cancer.  She delved deeper, got to a diagnosis, and kept asking questions, finding out how to protect herself and others in her family from the worst consequences of this condition. Hear her remarkable story, the path she followed in doing her own research, and the partnerships she has developed with medical professionals to help her make progress for herself and others.   ]]>ihavelynchsyndrome.com. She frequently writes about the emotional aspects of having Lynch syndrome, and writes for various websites and journals in order to create awareness amongst the global medical community about this hereditary cancer syndrome. Georgia is a wife and mother, and loves espresso, books, and being bossed around by her adorable dog named Sid. What is Lynch syndrome?  We will learn more from Georgia, or you can read about it on her website, or in this article from www.curetoday.com Georgia noticed that there were several people in her family who had cancer at early ages, and several with the same cancer.  This can indicate that there is something genetic predisposing family members to cancer.  She delved deeper, got to a diagnosis, and kept asking questions, finding out how to protect herself and others in her family from the worst consequences of this condition. Hear her remarkable story, the path she followed in doing her own research, and the partnerships she has developed with medical professionals to help her make progress for herself and others.   ]]>Healthhttps://www.blogtalkradio.com/powerful-patient/2015/03/26/cancer-in-families--lynch-syndrome/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/03/26/cancer-in-families--lynch-syndromeThu, 26 Mar 2015 19:00:00 GMTCancer in Families - Lynch Syndromeihavelynchsyndrome.com. She frequently writes about the emotional aspects of having Lynch syndrome, and writes for various websites and journals in order to create awareness amongst the global medical community about this hereditary cancer syndrome. Georgia is a wife and mother, and loves espresso, books, and being bossed around by her adorable dog named Sid. What is Lynch syndrome?  We will learn more from Georgia, or you can read about it on her website, or in this article from www.curetoday.com Georgia noticed that there were several people in her family who had cancer at early ages, and several with the same cancer.  This can indicate that there is something genetic predisposing family members to cancer.  She delved deeper, got to a diagnosis, and kept asking questions, finding out how to protect herself and others in her family from the worst consequences of this condition. Hear her remarkable story, the path she followed in doing her own research, and the partnerships she has developed with medical professionals to help her make progress for herself and others.   ]]>Joyce and Mike speak with Georgia Hurst as part of Lynch Syndrome Awareness Week. Georgia Hurst is a patient advocate for those with Lynch syndrome. She is the founder of the website and blog: <a href="http://ihavelynchsyndrome.com">ihavelynchsyndrome.com</a>. She frequently writes about the emotional aspects of having Lynch syndrome, and writes for various websites and journals in order to create awareness amongst the global medical community about this hereditary cancer syndrome. Georgia is a wife and mother, and loves espresso, books, and being bossed around by her adorable dog named Sid. What is Lynch syndrome?  We will learn more from Georgia, or you can read about it on her website, or in this article from <a href="http://http://www.curetoday.com/community/georgia-hurst/2015/02/i-have-lynch-syndrome">www.curetoday.com</a> Georgia noticed that there were several people in her family who had cancer at early ages, and several with the same cancer.  This can indicate that there is something genetic predisposing family members to cancer.  She delved deeper, got to a diagnosis, and kept asking questions, finding out how to protect herself and others in her family from the worst consequences of this condition. Hear her remarkable story, the path she followed in doing her own research, and the partnerships she has developed with medical professionals to help her make progress for herself and others.   00:31:00Powerful Patientnokidney cancer,colon cancer,liver cancer,Lynch syndrome,familial cancer syndromeJoyce and Mike speak with Georgia Hurst as part of Lynch Syndrome Awareness Week. Georgia Hurst is a patient advocate for those with Lynch syndrome. She is thehttps://www.blogtalkradio.com/powerful-patient/2015/03/19/challenging-kidney-cancerHealthhttps://www.blogtalkradio.com/powerful-patient/2015/03/19/challenging-kidney-cancer/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/03/19/challenging-kidney-cancerThu, 19 Mar 2015 19:00:00 GMTChallenging Kidney CancerMike Lawing and Andy Derr have been living with kidney cancer for years.  Both of them have learned not to knuckle under to a difficult diagnosis, but to challenge themselves to live WITH it, maintain their quality of life, and keep the nastiest effects of cancer at bay. It's not easy.  But today there are better tools for challenging kidney cancer than ever before.  Working closely with their doctors, they have discovered strategies -- medical, mental, and spiritual -- that have helped them keep their heads high and their spirits strong and at the same time keeping cancer in the background of their lives. Mike, Andy, and Joyce all attended the Kidney Cancer Symposium sponsored by the Kidney Cancer association in October 2014, and prepared a report in patient-approachable language to share with other patients and their families the amazing progress reported at the symposium.  Mike did the bulk of the work -- the concept, the layout, and pictures, the editing -- and Andy and Joyce contributed articles.   You will want to hear this conversation! 00:31:00Powerful Patientnokidney cancerMike Lawing and Andy Derr have been living with kidney cancer for years.  Both of them have learned not to knuckle under to a difficult diagnosis, but to challehttps://www.blogtalkradio.com/powerful-patient/2015/03/05/the-savvy-sister-teaches-resilienceHealthhttps://www.blogtalkradio.com/powerful-patient/2015/03/05/the-savvy-sister-teaches-resilience/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/03/05/the-savvy-sister-teaches-resilienceThu, 05 Mar 2015 20:00:00 GMTThe Savvy Sister Teaches ResilienceDiagnosed with cancer in 2005, Susan Gonzalez, R.N., BSN,  had a unique perspective on the disease, being a nurse in the patient’s role. She took that knowledge and her passion for finding natural cures to fight disease and started writing a blog for those who wanted to make simple changes for healthy living with an emphasis on avoiding cancer. Her blog, The Savvy Sister, provides useful information and simple changes you can make today to live a healthier, happier life. https://sisterearthorganics.wordpress.com/ Susan is the Co-Author of 100 Perks of Having Cancer (Plus 100 Health Tips for Surviving It) Susan and Mike will talk about 100 Perks, Susan's passion for empowering patients with knowledge, and an upcoming Wellness Retreat: Exploring the Healing Power of “Yin”  which will be held in Atlanta, GA on April 18, 2015 Resilience: The capacity to adapt and thrive in the face of a challenge. 00:31:00Powerful Patientnonutrition,cancer survivor,managing stressDiagnosed with cancer in 2005, Susan Gonzalez, R.N., BSN,  had a unique perspective on the disease, being a nurse in the patient’s role. She took that knowledgehttps://www.blogtalkradio.com/powerful-patient/2015/02/26/developmental-delays-and-5p-Healthhttps://www.blogtalkradio.com/powerful-patient/2015/02/26/developmental-delays-and-5p-/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/02/26/developmental-delays-and-5p-Thu, 26 Feb 2015 20:00:00 GMTDevelopmental Delays and 5p-Mike and Joyce speak with Laura Castillo, Executive Director of FivePMinus.org, helping families affected by Cri du Chat (Cat Cry) Syndrome (CdCs). Babies born with CdCs are characterized at birth by a high-pitched cry, low birth weight, poor muscle tone, microcephaly, and potential medical complications.  "5p-" is a term used by geneticists to describe a portion of the short arm of chromosome number five that is missing in these individuals.  Some of the facial characteristics include: Round "moon shaped" faceSmall upturned nose at birthSmall or low set chin (micrognathis)Low positioned earsDownward slanting of the eyesWide spaced eyesExtra skin fold at the inner corner of one or both eyes (epicanthal fold) These facial features usually elongate as the child enters adulthood.  Children with CdCs are often also diagnosed with autism since many of the developmental issues are similar. There is a great deal of good information on this syndrome on their website.  See especially http://www.fivepminus.org/Development Laura shares with us the origins of the 5p- Society, the national family support group for individuals with Cri du Chat Syndrome.  They group shares expeerience and provides support to individuals and families affected by CdCs, sharing strategies for managing the syndrome and supporting their children in achieving his or her maximum potential  Children with Cri du Chat Syndrome can lead full and meaningful lives with love and support. 00:31:00Powerful Patientnodevelopmental delays,autismMike and Joyce speak with Laura Castillo, Executive Director of FivePMinus.org, helping families affected by Cri du Chat (Cat Cry) Syndrome (CdCs). Babies bornhttps://www.blogtalkradio.com/powerful-patient/2015/02/19/adrenaline-and-your-healthHealthhttps://www.blogtalkradio.com/powerful-patient/2015/02/19/adrenaline-and-your-health/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/02/19/adrenaline-and-your-healthThu, 19 Feb 2015 20:00:00 GMTAdrenaline and Your HealthDr Michael Platt has published a book, "Adrenaline Dominance: A Revolutionary Approach to Wellness".  He examines the role that adrenaline may plan in a number of conditions that are quite often misunderstood, including ADHD, Irritable bowel syndrome, PTSD and Autism.  He offers dietary ways to control the over-production of adrenaline. With a background in diseases that cause pheochromocytoma -- a tumor that causes over-production of adrenaline -- Joyce is eager to discuss with him how to differentiate between pheos and the kind of medically treatable adrenaline dominance that he discusses in his book.  Pheos are difficult to diagnose, and they notoriously do not respond to medical treatment.  Undiagnosed pheos can be life-threatening if they are not diagnosed and removed, especially during pregnancy.  Some pheos can even metastasize.  If you have a pheo, it is extremely important to diagnose and remove this dangerous tumor.  Pheos are also sometimes called paragangliomas, especially when they occur in the region of the chest or neck.  They can occur anywhere from the earlobe to the groin, on either side of the body, along the sympathetic nervous system. Please listen and participate in this discussion.   For more information on pheochromocytoma and paraganglioma, please see http://www.pheoparatroopers.org/information/about-pheo-para/ https://science.nichd.nih.gov/confluence/display/pheo There are more than 20 tiny genetic flaws that can increase one's chance of having a pheo or para.  If you know that any of these conditions runs in your family, be sure to get tested for the presence of one of these tumors before embarking on Dr. Platt's treatments.  It will be easier to diagnose the pheo-para before this treatment.   00:34:00Powerful PatientnoADHD,anxiety,depression,IBS,pheochromocytomaDr Michael Platt has published a book, "Adrenaline Dominance: A Revolutionary Approach to Wellness".  He examines the role that adrenaline may plan in a numberhttps://www.blogtalkradio.com/powerful-patient/2015/02/12/help-and-hope-for-mental-illnessHealthhttps://www.blogtalkradio.com/powerful-patient/2015/02/12/help-and-hope-for-mental-illness/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/02/12/help-and-hope-for-mental-illnessThu, 12 Feb 2015 20:00:00 GMTHelp and Hope for Mental IllnessCindy Vickers is very interested and passionate about assisting those who are suffering from a variety of conditions which are consolidated under the heading of mental illness. Cindy is involved with a North Carolina chapter of the National Alliance on Mental Illness. See http://www.nami.org and Cindy’s local branch at http://www.nami.org/sites/NAMIrutherford-cleveland Mental illness affects everyone. Nearly 60 million Americans experience a mental health condition every year. Regardless of race, age, religion or economic status, mental illness impacts the lives of at least one in four adults and one in 10 children across the United States. People living with mental illness need help and hope: they need a community that supports them, their families and their recovery. Because mental illness devastates the lives of so many Americans, NAMI works every day to save every life. NAMI is the National Alliance on Mental Illness, the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness. NAMI advocates for access to services, treatment, supports and research and is steadfast in its commitment to raise awareness and build a community for hope for all of those in need. 00:32:00Powerful PatientnoCindy Vickers is very interested and passionate about assisting those who are suffering from a variety of conditions which are consolidated under the heading ofhttps://www.blogtalkradio.com/powerful-patient/2015/02/05/differences-bullying-and-sturge-weber-syndromeHealthhttps://www.blogtalkradio.com/powerful-patient/2015/02/05/differences-bullying-and-sturge-weber-syndrome/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/02/05/differences-bullying-and-sturge-weber-syndromeThu, 05 Feb 2015 20:00:00 GMTDifferences, Bullying, and Sturge-Weber SyndromeKaren Ball, CEO of the Sturge-Weber Foundation, speaks with Joyce about Sturge-Weber syndrome (SWS) and the challenges faced by people with this condition.  The Sturge-Weber Foundation provides support and services for individuals with Sturge-Weber syndrome, Port Wine Stain Birthmarks, and Klippel-Trenaunay syndrome.  Sturge-Weber Syndrome (encephelotrigeminal angiomatosis) is a congenital, non-familial disorder of unknown incidence and cause. It is characterized by a congenital facial birthmark and neurological abnormalities. Other symptoms associated with Sturge-Weber can include eye and internal organ irregularities. Each case of Sturge-Weber Syndrome is unique and exhibits the characterizing findings to varying degrees. Because of the physical differences that people with SWS often have, they are frequently the object of rude or bullying behaviors.  Sturge-Weber Foundation has taken up this challenge on behalf of all those with differences in their BullyBeGone Challenge. Come chat with Karen and Joyce. 00:29:00Powerful Patientnosturge-weber syndrome,SWS,bullying,cluster seizures,port wire stainKaren Ball, CEO of the Sturge-Weber Foundation, speaks with Joyce about Sturge-Weber syndrome (SWS) and the challenges faced by people with this condition.  Thehttps://www.blogtalkradio.com/powerful-patient/2015/01/29/powerful-patient-meets-youth-servicesHealthhttps://www.blogtalkradio.com/powerful-patient/2015/01/29/powerful-patient-meets-youth-services/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/01/29/powerful-patient-meets-youth-servicesThu, 29 Jan 2015 20:00:00 GMTPowerful Patient meets Youth ServicesFather Donald E. Mowery is the retired leader of Youth Services globally.  He has had a radio show, Talk it Out with Father Don, on WHBQ radio in Memphis, Tennessee, for the past 45 years.  This month Joyce Graff appeared on his show.  Joyce and Father Don have a great conversation about Powerful Patient and its mission, and also about Youth Services and its mission, highlighting many parallels.  In both cases, they work to empower people to work through the issues they cannot change and tackle constructively the things they can change. Learn more about Father Don.  A new book, Spiritual Networking, by Darrell B. Uselton and David Yawn, recounts the history of Youth Services in Memphis and worldwide. 01:01:00Powerful Patientnoyouth services,father don mowery,powerful patient,empower,empowermentFather Donald E. Mowery is the retired leader of Youth Services globally.  He has had a radio show, Talk it Out with Father Don, on WHBQ radio in Memphis, Tennehttps://www.blogtalkradio.com/powerful-patient/2015/01/22/living-with-barth-syndromeHealthhttps://www.blogtalkradio.com/powerful-patient/2015/01/22/living-with-barth-syndrome/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/01/22/living-with-barth-syndromeThu, 22 Jan 2015 20:00:00 GMTLiving with Barth SyndromeShelley Bowen is the Director of Family Services and Awareness for the Barth Syndrome Foundation (BSF). BSF works to increase awareness on a global level among the medical community, academic community, the medical research community and the lay population about Barth Syndrome.  There are better strategies today than ever before for living with Barth Syndrome.  Nonetheless, it often shortens the lifespan of people, especially children.  Shelley speaks with Mike and Joyce about life with Barth Syndrome, and how families cope when life ends. For more information about Barth Syndrome, see https://www.barthsyndrome.org 00:32:00Powerful Patientnobarth syndrome,genetic illness,death,dying,bereavementShelley Bowen is the Director of Family Services and Awareness for the Barth Syndrome Foundation (BSF). BSF works to increase awareness on a global level amonghttps://www.blogtalkradio.com/powerful-patient/2015/01/15/listening-reflecting-healingHealthhttps://www.blogtalkradio.com/powerful-patient/2015/01/15/listening-reflecting-healing/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/01/15/listening-reflecting-healingThu, 15 Jan 2015 20:00:00 GMTListening, Reflecting, HealingMary-Frances Garber is a genetic counselor who provides Supportive Genetic Counseling, complementing what is traditionally offered in medical centers. Supportive Genetic Counseling is for women and their partners who have experienced pregnancy loss, stillbirth, pregnancies affected with abnormalities, or for individuals or families with the recent diagnosis of a genetic condition. “My focus is on the emotional responses patients and their partners may have following various obstetrical and genetic complications. Each person is unique in the way they respond to these issues. It is my goal to listen to you, help you cope with your emotional response and facilitate healing and moving forward with your life.” Mary-Frances Garber is a board certified, licensed genetic counselor who earned her B.S. in Molecular Genetics from the University of Rochester and her M.S. in Human Genetics from Sarah Lawrence College. Having worked for 11 years in a high-risk obstetrical setting in the Antenatal Diagnostic Center at Brigham and Women’s Hospital, she gained extensive counseling experience. She has worked with many families having various genetic, chromosomal or developmental conditions. She is now in private practice focusing on patients with concerns surrounding compromised pregnancy outcomes, a recent diagnosis of a birth defect or genetic condition, and those in the process of obtaining a diagnosis for their child. Mike and Joyce speak with Mary-Frances about her work. See her website at http://www.listeningreflectinghealing.com/ 00:30:00Powerful Patientnoprenatal diagnosis,stillborn,genetic diagnosis,birth defectsMary-Frances Garber is a genetic counselor who provides Supportive Genetic Counseling, complementing what is traditionally offered in medical centers. Supportivhttps://www.blogtalkradio.com/powerful-patient/2015/01/08/hope-and-resilience-in-the-face-of-chronic-illnesshttp://www.cindyconey.com ]]>http://www.cindyconey.com ]]>Healthhttps://www.blogtalkradio.com/powerful-patient/2015/01/08/hope-and-resilience-in-the-face-of-chronic-illness/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/01/08/hope-and-resilience-in-the-face-of-chronic-illnessThu, 08 Jan 2015 20:00:00 GMTHope and Resilience in the face of chronic illnesshttp://www.cindyconey.com ]]>Diagnosed with lupus over 30 years ago and committed to living the best life possible, Cindy is full of hope, inspiration and an unsinkable spirit that she loves using to help others affected by life challenging illness live better lives. Despite the fact that Cindy has knocked on death’s door several times, she does not see her story as a sad one. The one she chose to write following the diagnosis is one of hope and resiliency. She absolutely refuses to allow lupus to be the focus of her life. Although claiming to be “genetically optimistic,” she knows that others can also live fulfilling and happy lives in spite of illness and her goal is to help them do just that! See also <a href="http://www.cindyconey.com">http://www.cindyconey.com</a> 00:29:00Powerful Patientnolupus,chronic illness,managing stress,managing fearDiagnosed with lupus over 30 years ago and committed to living the best life possible, Cindy is full of hope, inspiration and an unsinkable spirit that she lovehttps://www.blogtalkradio.com/powerful-patient/2015/01/01/managing-caregiver-stressHealthhttps://www.blogtalkradio.com/powerful-patient/2015/01/01/managing-caregiver-stress/#commentshttp://www.blogtalkradio.com/powerful-patient/2015/01/01/managing-caregiver-stressThu, 01 Jan 2015 20:00:00 GMTManaging Caregiver StressJoyce talks with Eve (not her real name) about her experience as a caregiver through her husband’s chronic illness and death. She then talks with Dr. Sheryle Baker about Eve’s experience, and about the changes that occur in the dynamics between the patient and the caregiver, and how we can all help the caregiver survive. This is a one hour show. About Our Guests Eve (not her real name) is the widow of a man who had von Hippel-Lindau disease, and a series of brain and kidney tumors that led him to a course of dialysis and eventually to his death. Eve graciously shares the pain of her experience so that we can learn from her experience. Sheryle Baker, M.A., LMHC., is Executive Director of Life Center of Tampa, Florida, a non-profit agency that provides counseling for victims of violent crime, and people who have lost loved ones, through chronic illness or sudden death. She a psychotherapist specializing in bereavement and traumatic loss and incident. About Caregiver Stress It is important to manage caregiver stress while you are going through the experience. If the patient is willing to negotiate the changes in roles and responsibilities that occur, that can help. Others around the caregiver can provide important support and outlets for stress. For both the patient and the caregiver, there are a series of losses, culminating in the death of the loved one. Each of these losses must be grieved, and the grief worked through, or the stress turns outward (as anger) or inward (as bitterness and even illness). Often when we are in a traumatic incident we muddle on through and seem to be doing fine. After the peak of the stress has passed, however, we crash. This “post-traumatic stress” can be devastating, and requires work to get through it. 01:01:00Powerful Patientnocaregiving,caregiver stress,VHL,kidney cancer,dialysisJoyce talks with Eve (not her real name) about her experience as a caregiver through her husband’s chronic illness and death. She then talks with Dr. Sheryle Bahttps://www.blogtalkradio.com/powerful-patient/2014/12/25/finding-hopehttp://www.lazarex.org ]]>http://www.lazarex.org ]]>Healthhttps://www.blogtalkradio.com/powerful-patient/2014/12/25/finding-hope/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/12/25/finding-hopeThu, 25 Dec 2014 20:00:00 GMTFinding Hopehttp://www.lazarex.org ]]>Mike and Joyce speak with Dana Dornsife, President and Founder of an organization called Lazarex that helps people identify and participate in clinical trials that may be appropriate for their condition. Dana first became involved in cancer patient advocacy when her brother-in-law, Mike Miller, was diagnosed with pancreatic cancer in 2003. Mike had three children, the youngest of whom was only four years old. Dana and her family searched for options for Mike that would buy the family some time and found a clinical trial treatment. Mike was treated successfully and lived long enough for his youngest daughter to have real memories of him. Since then, Dana has fought tirelessly for improved options for cancer patients who have been told there is no hope left. Lazarex Cancer Foundation was formed in 2006 to build a bridge to hope, dignity and life for cancer patients and their families. It provides financial assistance to defray the costs associated with patient participation in FDA clinical trials. Additionally, it helps patients navigate their clinical trial options and provide community education and outreach services.     - helps patients of all ages and walks of life, with all forms of cancer.     - helps patients take advantage of medical breakthroughs today, because they may not have a tomorrow.     - believes that the size of a patient's checkbook should not stand between them and the choices they make or the treatments they need.     - provides resources to fill the gap that exists between when a patient is told there is no more hope and when they are truly done with their journey in life. For more information, see <a href="http://www.lazarex.org">http://www.lazarex.org</a> 00:30:00Powerful Patientnoclinical trials,cancerMike and Joyce speak with Dana Dornsife, President and Founder of an organization called Lazarex that helps people identify and participate in clinical trials thttps://www.blogtalkradio.com/powerful-patient/2014/12/18/going-outside-your-comfort-zone-for-medical-careHealthhttps://www.blogtalkradio.com/powerful-patient/2014/12/18/going-outside-your-comfort-zone-for-medical-care/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/12/18/going-outside-your-comfort-zone-for-medical-careThu, 18 Dec 2014 19:00:00 GMTGoing outside your comfort zone for medical careMike and Joyce chat about the adventure of going outside your comfort zone for medical care. Joyce has been hosting a family from a village on the west coast of Ecuador who are in Boston to get life-saving heart surgery for their son.  Not only have they traveled a great distance, but Boston has very different weather than the tropical weather of Ecuador, the food is entirely different, and they don't speak any English. They also chat about some of the highlights of the shows of 2014, and foreshadow next week's Christmas week show about considering clinical trials, and the resources that are available to assist you in finding and joining clinical trials that might be helpful in your situation. Many thanks for listening in 2014, we hope you enjoy next week's show, and that you will be with us in 2015, happy and in good health. Be well, and be a Powerful Patient.   00:31:00Powerful Patientnohealthcare,medical tourism,clinical trialsMike and Joyce chat about the adventure of going outside your comfort zone for medical care. Joyce has been hosting a family from a village on the west coast ohttps://www.blogtalkradio.com/powerful-patient/2014/12/11/meaningful-use-and-electronic-health-recordsHealthhttps://www.blogtalkradio.com/powerful-patient/2014/12/11/meaningful-use-and-electronic-health-records/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/12/11/meaningful-use-and-electronic-health-recordsThu, 11 Dec 2014 20:00:00 GMTMeaningful Use and Electronic Health RecordsJoyce and Mike speak with Dr. Joshua Seidman about the concept of "Meaningful Use" in healthcare and how it can be used along with electronic health records (EHR) to improve patient care. Dr. Seidman is Vice President in charge of Payment and Delivery Reform at Avalere Health.  He is also the Immediate Past President of the Society for Participatory Medicine. Previouslyt, Seidman was the Director of Meaningful Use at the Office of the National Coordinator (ONC) for Health Information Technology within the U.S. Department of Health & Human Services. At ONC, Dr. Seidman guided development of resources that helped providers become meaningful users of HIT, and helped to evolve meaningful use practice and policy. During nearly two decades in health care, Seidman has focused on: quality measurement and improvement; the intersection of e-health and health services research; and structuring consumer e-health interventions to support improved health behaviors and informed decision making. Before that, Seidman was the founding President of the Center for Information Therapy, which advanced the practice and science of delivering tailored information to consumers to help them make better health decisions and lead healthier lives. At the IxCenter, Seidman focused on stimulating innovation, diffusing best practices, and evangelizing for a patient-centered orientation to implementation of HIT applications. See also e-patients.net and http://participatorymedicine.org 00:32:00Powerful Patientnomeaningful use,electronic health records,ehrJoyce and Mike speak with Dr. Joshua Seidman about the concept of "Meaningful Use" in healthcare and how it can be used along with electronic health records (EHhttps://www.blogtalkradio.com/powerful-patient/2014/12/04/sleep-truckers-and-womenHealthhttps://www.blogtalkradio.com/powerful-patient/2014/12/04/sleep-truckers-and-women/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/12/04/sleep-truckers-and-womenThu, 04 Dec 2014 20:00:00 GMTSleep, Truckers, and WomenJoyce and Mike speak with Edward Grandi about Sleep. the importance of sleep. Grandi, the former executive director of the American Sleep Apnea Association, is a nationally and internationally invited speaker in the field of sleep medicine to patient and professional groups.  He has been praised in particular for his work raising awareness of the importance of sleep among drivers in the transportation industry, and highlighting the particular importance of sleep for women. 00:33:00Powerful Patientnosleep,sleep apnea,truckers and sleepJoyce and Mike speak with Edward Grandi about Sleep. the importance of sleep. Grandi, the former executive director of the American Sleep Apnea Association, ishttps://www.blogtalkradio.com/powerful-patient/2014/11/19/e-patients-live-longerHealthhttps://www.blogtalkradio.com/powerful-patient/2014/11/19/e-patients-live-longer/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/11/19/e-patients-live-longerWed, 19 Nov 2014 20:00:00 GMTe-Patients Live LongerDr. Nancy Finn has written a sequel to her book, ePatients Live Longer.  Joyce and Mike speak with her about the new edition, and what she has learned since the writing of her earlier book.  How does it help a patient to do some research, get engaged, and advocate for him or herself? See Nancy's website at http://healthcarebasicsinfo.com/ 00:32:00Powerful Patientnoempowered patient,engaged patient,advocating for yourselfDr. Nancy Finn has written a sequel to her book, ePatients Live Longer.  Joyce and Mike speak with her about the new edition, and what she has learned since thehttps://www.blogtalkradio.com/powerful-patient/2014/11/06/surviving-pancreatic-cancerHealthhttps://www.blogtalkradio.com/powerful-patient/2014/11/06/surviving-pancreatic-cancer/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/11/06/surviving-pancreatic-cancerThu, 06 Nov 2014 20:00:00 GMTSurviving Pancreatic CancerSteven Lewis has written a new book about surviving pancreatic cancer.  Joyce speaks with him about his experience, and the advice he would give to other cancer patients. In what his physicians have called a “miraculous recovery,” Steven Lewis, Ph.D., a visiting professor in the Charles E. Schmidt College of Medicine at Florida Atlantic University, has beaten all odds surviving two bouts of pancreatic cancer. Lewis was first diagnosed with the disease in 2007, and again almost three years later when the cancer metastasized to his liver. He has persevered major surgeries, radiation treatments and chemotherapy. With the highest mortality rate of all major cancers, pancreatic cancer patients have less than a five percent survival rate within five years of diagnosis, and 74 percent of patients die within the first year of diagnosis. It is the fourth leading cause of cancer-related deaths in the U.S. with an estimated 46,420 Americans diagnosed each year. Pancreatic cancer is one of the few cancers for which survival has not improved substantially over nearly 40 years. In recent years, pancreatic cancer has received considerable attention because many well-known individuals such as Apple co-founder Steve Jobs, actor Patrick Swayze and opera singer Luciano Pavarotti have died from the disease. Following the surgery to remove the cancer in his liver, Lewis has been cancer free and in excellent health for more than four years. Along with his outstanding team of physicians, Lewis credits his ability to maintain an extremely positive attitude with saving his life. As an exercise physiologist, researcher and teacher, he leads a vigorous life, exercising regularly to maintain a high level of physical fitness and health. 00:32:00Powerful Patientnopancreatic cancerSteven Lewis has written a new book about surviving pancreatic cancer.  Joyce speaks with him about his experience, and the advice he would give to other cancerhttps://www.blogtalkradio.com/powerful-patient/2014/10/31/empowered-patient-coalitionHealthhttps://www.blogtalkradio.com/powerful-patient/2014/10/31/empowered-patient-coalition/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/10/31/empowered-patient-coalitionFri, 31 Oct 2014 15:00:00 GMTEmpowered Patient CoalitionMike and Joyce speak with Dr. Julia Hallisy about The Empowered Patient Coalition: providing healthcare improvement and patient safety tools directly to consumers. http://empoweredpatientcoalition.org About Dr. Hallisy: Dr. Julia Hallisy obtained her BS in Biological Science from the University of San Francisco in 1984 and a second Bachelor’s degree from the University of California in Dental Sciences. In 1988, Dr. Hallisy received her Doctorate in Dental Surgery from the University of California at San Francisco School of Dentistry. Since that time, she has been a full-time practicing San Francisco dentist. Her second child, Katherine Eileen, was diagnosed at five months of age with bilateral retinoblastoma. Dealing with her daughter’s life-threatening diagnosis, the many recurrences of cancer, and the subsequent treatments for the malignant and aggressive tumors marked the beginning an almost 20-year involvement in our healthcare system. The unique combination of her scientific training, her work as a healthcare provider, and guiding a child through a chronic illness has afforded her invaluable insight as an advocate for patients.    Dr. Hallisy began to research the topic of patient safety in 1998. She has lobbied for health care reform in Washington, DC with Consumer’s Union. Dr. Hallisy is committed to and passionate about the subjects of patient safety, health care reform and medical error reduction. She is the founder and president of The Empowered Patient Coalition. Dr. Hallisy was born and raised in San Francisco, where she lives with her husband, John Hallisy, and their two sons, Daniel and Kevin. The Hallisy’s ten-year old daughter, Kate, lost her life-long battle with cancer in February 2000. 00:31:00Powerful Patientnopatient empowermentMike and Joyce speak with Dr. Julia Hallisy about The Empowered Patient Coalition: providing healthcare improvement and patient safety tools directly to consumehttps://www.blogtalkradio.com/powerful-patient/2014/10/02/empowering-yourself--getting-in-shapeHealthhttps://www.blogtalkradio.com/powerful-patient/2014/10/02/empowering-yourself--getting-in-shape/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/10/02/empowering-yourself--getting-in-shapeThu, 02 Oct 2014 19:00:00 GMTEmpowering Yourself - Getting in ShapeMike and Joyce speak with Lisa Dwoskin about fitness. And don’t worry, as a former gym owner she believes that the WORST way to get in shape is to join a gym! How many people think, “If only I could lose the weight then I would finally be happy” … but the obsession with winning the perfect body is a recipe for misery and disappointment. • 1 in 4 people make the same resolutions every year…and still fail to achieve them. The awful truth is almost everyone who tries to get into shape self-sabotages. Why? They only focus on the body and not the mind. • 73% Of Folks Who Set Fitness Goals As New Year’s Resolutions…Give Them Up Example: If you are addicted to junk food, the problem is only partially physical. The craving for junk food starts in the mind…and can only be dealt with by working with the mind first. • 13% of people lie about going to the Gym It’s the shame of feeling like a “failure” or “hopelessly behind” in health which ruins peoples results. By taking a different approach and learning to accept oneself first. Only then is total mind and body health possible. Lisa Dwoskin was a long time fitness correspondent on NBC 6 South Flordia–for the the Rick Sanchez show. Lisa was also a competitive bodybuilder, fitness competitor and gym owner. Lisa Dwoskin devoted her life to chasing the perfect body, but found this quest—had drastic negative sideeffects–to both her health and personal life: Lisa had to make a major change. Besides writing Metamorphecise, Lisa now trains select private clients. 00:28:00Powerful Patientnofitness,weight lossMike and Joyce speak with Lisa Dwoskin about fitness. And don’t worry, as a former gym owner she believes that the WORST way to get in shape is to join a gym!https://www.blogtalkradio.com/powerful-patient/2014/09/25/healing-our-veinsHealthhttps://www.blogtalkradio.com/powerful-patient/2014/09/25/healing-our-veins/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/09/25/healing-our-veinsThu, 25 Sep 2014 19:00:00 GMTHealing our VeinsOur guest is Dr. Uchenna Onyeachom, Director of Endovascular Researh at Heart and Vascular Outcomes Research Institute in Beverly, Massachusetts, http://www.hvori.org  We will be talking with him about the Venous Patient Outcome Registry. We will talk about the kinds of conditions, including peripheral venous disease and varicose veins, about which information is being collected, and why patients and physicians might want to participate. The Venous Patient Outcome Registry (VPOR), the first-ever patient-centered online registry, was developed to assess patient outcomes and quality of life for the various treatments of venous disease by standardizing the collection and analysis of clinical information, patient trends and practice patterns by specialists nationwide. Since its launch , VPOR is already recruiting sites and patients from all regions of the United States. VPOR aims to provide clear, impartial evidence on the effectiveness, benefits and harms of available treatment options for both patients and physicians. Align the needs of patients with the performance of physicians, VPOR will help to translate research findings into information that is useful to clinicians, policy makers, payers and regulators for better patient care.  http://www.venouspatientregistry.org The Heart & Vascular Outcomes Research Institute (HVORI) is a non-profit research organization dedicated to the study of heart, vascular and related disorders. HVORI’s mission is to provide excellence in patient-focused outcome research, thereby improving quality of care, advancing clinical outcomes, reducing healthcare costs and driving innovation. 00:32:00Powerful Patientnoperipheral venous disease,varicose veinsOur guest is Dr. Uchenna Onyeachom, Director of Endovascular Researh at Heart and Vascular Outcomes Research Institute in Beverly, Massachusetts, http://www.hvohttps://www.blogtalkradio.com/powerful-patient/2014/09/10/kidney-health--time-for-some-decent-exposure-1Healthhttps://www.blogtalkradio.com/powerful-patient/2014/09/10/kidney-health--time-for-some-decent-exposure-1/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/09/10/kidney-health--time-for-some-decent-exposure-1Wed, 10 Sep 2014 10:00:00 GMTKidney Health - Time for some Decent ExposureJoyce speaks with Anne Wilson, CEO of Kidney Health Australia (kidney.org.au), an organization dedicated to helping all Australians maintain good kidney health throughout their lifetimes. While traditionally focused on kidney diseases that reduce kidney function and may lead to dialysis and transplant, several years ago the organization undertook also to support people with kidney cancer. It now works not only for awareness of issues that may degrade kidney function, it works too to raise awareness of the early signs of kidney cancer and connect people diagnosed with any of these issues find the help they need. In addition to her work with Kidney Health Australia, Anne also serves with Joyce on the Leadership Team of the International Kidney Cancer Coalition (IKCC.org), an international network of patient support and advocacy organizations established with the mission of improving the quality of life of patients and their families living with kidney cancer. IKCC provides information, support and assistance to national and regional non-profit kidney cancer organizations. All organizations are welcome to participate. 00:37:00Powerful Patientnokidney disease,kidney cancer,kidney healthJoyce speaks with Anne Wilson, CEO of Kidney Health Australia (kidney.org.au), an organization dedicated to helping all Australians maintain good kidney healthhttps://www.blogtalkradio.com/powerful-patient/2014/08/28/who-has-access-to-electronic-health-records-ehrHealthhttps://www.blogtalkradio.com/powerful-patient/2014/08/28/who-has-access-to-electronic-health-records-ehr/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/08/28/who-has-access-to-electronic-health-records-ehrThu, 28 Aug 2014 19:00:00 GMTWho has access to Electronic Health Records (EHR)?In order to maintain privacy and confidentiality, there are rules of access to Electronic Health Records (EHR) that can sometimes present barriers to delivering the best care. Tracy Zervakis and her daughter recently had quite an adventure trying to get the right medicine at the right time, and ran into several roadblocks imposed by the access rules around EHR at her hospital. While it sounds like a good idea to restrict access to those with a "need to know," in practice it sometimes get in the way.  Perhaps we need to re-think those rules, not only for the events in a peaceful day at the office, but also in an emergency.   Joyce and Mike speak with Tracy about her adventure and about ideas for improving the flow of medical information to patients, to emergency personnel, and to all those who really do "need to know" in order to deliver the right care at the right time. 00:30:00Powerful Patientnoelectronic health records,EHR,emergency room careIn order to maintain privacy and confidentiality, there are rules of access to Electronic Health Records (EHR) that can sometimes present barriers to deliveringhttps://www.blogtalkradio.com/powerful-patient/2014/08/21/learning-more-about-hlrccHealthhttps://www.blogtalkradio.com/powerful-patient/2014/08/21/learning-more-about-hlrcc/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/08/21/learning-more-about-hlrccThu, 21 Aug 2014 19:00:00 GMTLearning More about HLRCCIn the last year there have been several new articles that add greatly to our understanding of a rare form of kidney cancer, Hereditary Leiomyomatosis and Renal Cell Cancer. Joyce speaks with Graham Lovitt, Chairman of the HLRCC Family Alliance and moderator of the international support list for HLRCC and webmaster of http://hlrccinfo.org The primary resource for families and physicians is the HLRCC Handbook, compiled by the HLRCC Family Alliance to help patients and their physicians work together to manage their health. 00:31:00Powerful PatientnoHLRCC,kidney cancer,fibroidsIn the last year there have been several new articles that add greatly to our understanding of a rare form of kidney cancer, Hereditary Leiomyomatosis and Renalhttps://www.blogtalkradio.com/powerful-patient/2014/08/14/international-kidney-cancer-symposium-dublinHealthhttps://www.blogtalkradio.com/powerful-patient/2014/08/14/international-kidney-cancer-symposium-dublin/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/08/14/international-kidney-cancer-symposium-dublinThu, 14 Aug 2014 19:00:00 GMTInternational Kidney Cancer Symposium DublinMike Lawing attended the Ninth European Kidney Cancer Symposium in Dublin last April, and has carefully crafted an excellent report to share that meeting with all the patients and family members who wished they could be there. http://www.flipdocs.com/showbook.aspx?ID=10007570_454161 As usual, he has done an outstanding job. In this interview, Mike and Joyce speak about this conference with Robin Martinez, moderator of the patient support conversation at Smart Patients, the successor to the ACOR "KidneyOnc" list.  See http://www.smartpatients.com  Participants were asked to submit questions in advance to Robin or to Powerful Patient. In the conversation you will hear references to the following drugs: Interleukin-2 (IL-2) Sunitinib Pazopanib TKI's   00:45:00Powerful PatientnoHLRCC,kidney cancer,mTOR inhibitors,oncology,sunitinibMike Lawing attended the Ninth European Kidney Cancer Symposium in Dublin last April, and has carefully crafted an excellent report to share that meeting with ahttps://www.blogtalkradio.com/powerful-patient/2014/08/07/sleep-apnea-snoring-and-getting-enough-sleepHealthhttps://www.blogtalkradio.com/powerful-patient/2014/08/07/sleep-apnea-snoring-and-getting-enough-sleep/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/08/07/sleep-apnea-snoring-and-getting-enough-sleepThu, 07 Aug 2014 19:00:00 GMTSleep Apnea, Snoring, and Getting enough sleepJoyce and Mike speak with Edward Grandi about Sleep Apnea, snoring, and getting enough sleep. Grandi, the former executive director of the American Sleep Apnea Association, is a nationally and internationally invited speaker in the field of sleep medicine to patient and professional groups.  He has been praised in particular for his work raising awareness of the importance of sleep among drivers in the transportation industry, and highlighting the particular importance of sleep for women. https://www.youtube.com/watch?v=EoD7dgcDaiw . For more information on getting a diagnosis and on treatment options, see http://sleepapnea.org/ 00:35:00Powerful Patientnosleep,sleep apnea,falling asleep,snoringJoyce and Mike speak with Edward Grandi about Sleep Apnea, snoring, and getting enough sleep. Grandi, the former executive director of the American Sleep Apneahttps://www.blogtalkradio.com/powerful-patient/2014/07/31/defeating-leukemiaHealthhttps://www.blogtalkradio.com/powerful-patient/2014/07/31/defeating-leukemia/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/07/31/defeating-leukemiaThu, 31 Jul 2014 19:00:00 GMTDefeating LeukemiaJoyce and Mike speak with David Tuccaro Jr., the subject of the new book Bad To The Bone (by Marala Scott). David is a very inspirational young man who has defeated Leukemia. David's life was saved by a bone marrow donor from the other side of the world.  He is passionately committed to tell the world about the advances in bone marrow transplant technology that make it possible for a donor to test with a simple cheek swab, and to donate through a blood process that is nearly painless and is very simple compared to the older methods.  It is no longer necessary to drill into bone to extract bone marrow.   See also http://www.davidtuccaro.com 00:32:00Powerful Patientnoacute lymphocytic leukemia,bone marrow transplant,bone marrow donor,adult onset leukemiaJoyce and Mike speak with David Tuccaro Jr., the subject of the new book Bad To The Bone (by Marala Scott). David is a very inspirational young man who has defehttps://www.blogtalkradio.com/powerful-patient/2014/07/24/dementia-and-frontotemporal-degenerationHealthhttps://www.blogtalkradio.com/powerful-patient/2014/07/24/dementia-and-frontotemporal-degeneration/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/07/24/dementia-and-frontotemporal-degenerationThu, 24 Jul 2014 19:00:00 GMTDementia and Frontotemporal DegenerationKatie Brandt is a powerful public speaker and passionate advocate, educator and trainer in the areas of caregiver support, frontotemporal degeneration (FTD) and the impact of dementia on caregivers and families. Presentations at conferences, colleges, skilled nursing facilities, Massachusetts General Hospital, and the Massachusetts State House have focused on the medical, legal, financial, logistical and emotional challenges of caring for a loved one with dementia. As Regional Network Coordinator for the Association for Frontotemporal Degeneration, she provides support to families, and helps medical professionals think creatively about how they can enhance partnerships with caregivers to improve outcomes for patients. At a recent conference on Customer Centric Medical Information, Katie participated on a panel: Understanding the Role of Self-Educated Patients as Medical Information Customers. On Rare Disease Day 2014 she spoke at a session at the Massachusetts State House. Katie shares her own story with Joyce and Mike, and talks with them about caregiving, customer centric medical information and teamwork. For more information on Frontotemporal Degeneration and dementia, please see 00:31:00Powerful Patientnodementia,frontotemporal degeration,caregivers,teamwork with doctors,rare diseaseKatie Brandt is a powerful public speaker and passionate advocate, educator and trainer in the areas of caregiver support, frontotemporal degeneration (FTD) andhttps://www.blogtalkradio.com/powerful-patient/2014/07/17/pheo-paratroopers--patients-helping-patientsHealthhttps://www.blogtalkradio.com/powerful-patient/2014/07/17/pheo-paratroopers--patients-helping-patients/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/07/17/pheo-paratroopers--patients-helping-patientsThu, 17 Jul 2014 19:00:00 GMTPheo Paratroopers - Patients helping patientsAllen Wilson of the Pheo Paratroopers joins Joyce and Mike to talk about the organization, its mission, and the recent International Conference on Pheochromocytoma and Paraganglioma. Pheochromocytomas ("pheos" for short) are hormone-secreting tumors that can provoke that "fight or flight" response that has been protecting us from danger since the saber-toothed tiger.  While it is an important response, if there is in fact no danger, the artificial response can cause changes in blood pressure and digestion.  If not corrected quickly, this continual jagging of the system can lead to cardiovascular damage. Pheochromocytomas in the chest or neck are usually called paragangliomas. They occur on the ganglia (bunches of nerves) along the sympathetic nervous sytem. There are many genetic flaws that can increased the odds of getting a pheo.  Families who know they are at risk can do periodic screening to find pheos and paras early, so that they can be treated before cardiovascular damage occurs. For more information about pheochromocytomas, paragangliomas, research and diagnostic information, see http://www.pheoparatroopers.org/ 00:33:00Powerful Patientnopheochromocytoma,oaraganglioma,pheo,para,sypathetic nervous systemAllen Wilson of the Pheo Paratroopers joins Joyce and Mike to talk about the organization, its mission, and the recent International Conference on Pheochromocythttps://www.blogtalkradio.com/powerful-patient/2014/07/10/stephanie-sugars-and-the-pjs-communityHealthhttps://www.blogtalkradio.com/powerful-patient/2014/07/10/stephanie-sugars-and-the-pjs-community/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/07/10/stephanie-sugars-and-the-pjs-communityThu, 10 Jul 2014 19:00:00 GMTStephanie Sugars and the PJS CommunityStephanie Sugars has been moderating an online discussion group for families deaing with Peutz-Jeghers Syndrome since 2000.  Over the years she has seen lots of changes. Peutz-Jeghers Syndrome is a genetic disease.  One tiny change in the STK11 gene, a tumor suppressor gene, removes one level of protection against tumor growth.  With this alteration, a person is at increased risk of benign polyps and cancerous tumors of the digestive tract which may cause blockages.  It may also lead to tumors of the pancreas, breast, and reproductive tract. An early sign of the disease can be discolored spots on the iips and mucous membranes. Its gastric symptoms look a great deal like those of Familial Adenomatous Polyposis (FAP), which is caused by alterations in different genes.  The rate of diagnosis varies widely, and depends on the doctor remembering to think about this rare condition.  However a careful diagnosis is very important, as it helps the family and the medical team know what to watch out for. Joyce and Mike speak with Stephanie about her history with Peutz-Jeghers Syndrome. For more information on Peutz-Jeghers Syndrome, see http://peutz-jeghersnews.blogspot.com/ Peutz-Jeghers Syndrome & Juvenile Polyposis Syndrome Online Support Group: http://listserv.acor.org/archives/pjs.html   00:40:00Powerful PatientnoPeutz-Jeghers Syndrome,PJS,genetic disease,diagnosis,rare diseaseStephanie Sugars has been moderating an online discussion group for families deaing with Peutz-Jeghers Syndrome since 2000.  Over the years she has seen lots ofhttps://www.blogtalkradio.com/powerful-patient/2014/07/03/how-many-cts-is-too-manyHealthhttps://www.blogtalkradio.com/powerful-patient/2014/07/03/how-many-cts-is-too-many/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/07/03/how-many-cts-is-too-manyThu, 03 Jul 2014 19:00:00 GMTHow many CTs is too many?We would like to help the radiologists answer the question: "How many CT's is too many?" Mike and Joyce talk about Joyce's recent presentation to the International Conference on Radiation Protection in Medicine.  We review the findings of our Survey on Radiation Safety which she presented at that meeting. The attendees were primarily radiation physicists, with another 10% of radiologists and radiographers.  They are sympathetic with our concerns, but are just now learning how best to communicate with patients about the procedure, the dosage, and the pros and cons of the procedure. We need to provide some feedback to the radiologists and radiographers as to what we need to know, and how to phrase it in a way that will be meaningful and factual without being alarming. Please come brainstorm with us too about how we might ask patients to collect their own radiation exposure histories and help us all answer our questions about radiation exposure in medicine. 00:41:00Powerful Patientnoradiation dose,medical imaging,radiation exposure,radiation trackingWe would like to help the radiologists answer the question: "How many CT's is too many?" Mike and Joyce talk about Joyce's recent presentation to the Internatihttps://www.blogtalkradio.com/powerful-patient/2014/06/26/a-global-voice-for-patients-1Healthhttps://www.blogtalkradio.com/powerful-patient/2014/06/26/a-global-voice-for-patients-1/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/06/26/a-global-voice-for-patients-1Thu, 26 Jun 2014 19:30:00 GMTA Global Voice for PatientsThe Powerful Patient has recently been granted full membership in the International Alliance of Patients' Organizations (IAPO), an organization of organizations worldwide, IAPO is a unique global alliance representing patients of all nationalities across all disease areas and promoting patient-centred healthcare around the world. IAPO members are patients' organizations working at the international, regional, national and local levels to represent and support patients, their families and carers. A patient is a person with any chronic disease, illness, syndrome, impairment or disability. Joyce and Mike speak with Rachel Seal-Jones,Senior Policy Officer of IAPO, about the organization's activities.  IAPO has recently been grantedspecial consultative status with the United Nations Economic and Social Council (ECOSOC). IAPO will now actively engage with ECOSOC and its subsidiary bodies, the United Nations Secretariat, programmes, funds and agencies in a number of ways. This includes: Attendance at meetings and access to the United NationsSubmission of formal statements and oral presentations to the Council and other UN bodies on relevant topics Taking part in consultations with ECOSOC and other UN bodies For additional informaion, please see http://www.patientsorganizations.org 00:32:00Powerful Patientnopatient organization,caregiving,patient-centered,universal health coverage,patient advocateThe Powerful Patient has recently been granted full membership in the International Alliance of Patients' Organizations (IAPO), an organization of organizationshttps://www.blogtalkradio.com/powerful-patient/2014/06/19/new-initiatives-in-medical-devicesHealthhttps://www.blogtalkradio.com/powerful-patient/2014/06/19/new-initiatives-in-medical-devices/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/06/19/new-initiatives-in-medical-devicesThu, 19 Jun 2014 19:00:00 GMTNew Initiatives in Medical DevicesAndrea Stamp is the Director of Mass IGNITE, a program of the Massachusetts Medical Device Industry Council (MassMEDIC), an organization of medical device manufacturers, suppliers and associated non-profit groups in Massachusetts and the surrounding region. Among other things, MassMEDIC offers support to Emerging Companies, including business plan development, supplier and investor introductions, networking opportunities, programs and events. MedTech IGNITE, a MassMEDIC initiative, provides free mentoring to medical device entrepreneurs at the early stages of their companies’ conceptualization, formation and development. Andrea manages the MedTechIGNITE program. The acronym IGNITE stands for Inspiring Growth in New Innovative Technology Enterprises Joyce and Mike invited Andrea to speak with them about the new medical devices being created that might put more information and thus more power into the hands of the patients. For more information about MedTechIGNiTE, please see http://www.medtechignite.com/ For more information about MassMEDIC, see their website at http://www.massmedic.com 00:30:00Powerful Patientnoiphone,medical devices,patient data,patient empowerment,smartphoneAndrea Stamp is the Director of Mass IGNITE, a program of the Massachusetts Medical Device Industry Council (MassMEDIC), an organization of medical device manufhttps://www.blogtalkradio.com/powerful-patient/2014/06/12/updating-process-in-the-doctors-officeHealthhttps://www.blogtalkradio.com/powerful-patient/2014/06/12/updating-process-in-the-doctors-office/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/06/12/updating-process-in-the-doctors-officeThu, 12 Jun 2014 19:00:00 GMTUpdating Process in the Doctor's OfficeMike and Joyce speak with Casey Quinlan of Mighty Casey Media, author and blogger about patients’ rights and the value of patient input in medical research. Some medical institutions are beginning to “get” that the patients need to be involved from the beginning in all aspects of medical process and procedure. The patients are the “customers” and are the essential “stakeholders” in designing buildings, clinical trials, and indeed the business workflow surrounding all interactions between doctor and patient. Come hear Casey’s thoughts on how patients can and should be involved. “While some [doctors'] offices are looking at increasing their front desk staff, we should be looking at what banks have done. Limit services to those focusing on new patients and special needs. The days of having your name called out in a crowded doctor’s waiting room should be over – that is, unless you really like being asked at the front desk what you are there for (while a long line of patients eagerly await your answer). It’s time to reinvent your practice’s workflow, and it begins by being creative and tapping into your patient’s experience.” — Pete Rivera, Hayes Management Consultant, HIMSS Health Information Systems “I have this dream. It’s about how, when I make an appointment to see my doctor – my primary care physician – the process is easy, honors my time as much as it does my doctor’s, and winds up running smoothly for both parties.” — Casey Quinlan – See more at: http://www.disruptivewomen.net/2010/12/24/all-i-want-for-christmas-is-customer-service-at-my-doctor%E2%80%99s-office/#sthash.SGi2n6pa.dpuf 00:39:00Powerful Patientnopatient engagement,patient involvement,medical stakeholdersMike and Joyce speak with Casey Quinlan of Mighty Casey Media, author and blogger about patients’ rights and the value of patient input in medical research. Sohttps://www.blogtalkradio.com/powerful-patient/2014/05/29/on-tumor-development-and-diagnostic-imagingHealthhttps://www.blogtalkradio.com/powerful-patient/2014/05/29/on-tumor-development-and-diagnostic-imaging/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/05/29/on-tumor-development-and-diagnostic-imagingThu, 29 May 2014 19:30:00 GMTOn tumor development and diagnostic imagingMike shares from The Emperor of All Maladies on the development and progression of Lung Cancer, and talks with Joyce about Radiation exposure from Diagnostic Imaging. Be sure to read THE EMPEROR OF ALL MALADIES, a kind of "biography" of cancer, by Dr. Siddhartha Mukherjee.  See the New York Times book review for this important book, http://www.nytimes.com/2010/11/14/books/review/Weiner-t.html In the conversation they refer to a previous interview with Dr. Madan Rehani, Chief of the Division of Radiation Protection for the International Atomic Energy Agency in Vienna.  Click here for the interview. Joyce speaks from the Toronto airport, on her way to Varna, Bulgaria, to participate in the International Conference on Radiation Protection in Medicine, sponsored by the International Atomic Energy Agency based in Vienna.  She will share more about this conference and about the survey she presented there in the coming weeks. 00:28:00Powerful PatientnoEmperor of all Maladies,tumor development,cancer,diagnostic imaging,radiation exposureMike shares from The Emperor of All Maladies on the development and progression of Lung Cancer, and talks with Joyce about Radiation exposure from Diagnostic Imhttps://www.blogtalkradio.com/powerful-patient/2014/05/22/constructing-an-indestrictible-selfHealthhttps://www.blogtalkradio.com/powerful-patient/2014/05/22/constructing-an-indestrictible-self/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/05/22/constructing-an-indestrictible-selfThu, 22 May 2014 19:00:00 GMTConstructing an Indestrictible Self In his book, The Undefeated Mind, physician Alex Lickerman argues that resilience isn't something with which only a fortunate few of us have been born, but rather something we can all take action to develop. He offers a set of guidelines not for solving problems but for establishing a life state that makes all problems solvable. The Undefeated Mind details nine principles we can all use to dramatically increase our ability to withstand adversity, exhorting us to stop hoping for easy lives and instead to focus on cultivating the inner strength we need to enjoy the difficult lives we all have. Among other things, he focuses on why patients do not always follow the instructions of their physician.  What is about us that makes us say "yes" and then not do it?  How can patients and doctors change this? He shares his philosophy that all people are endowed with the innate ability to create value out of any situation, no matter how awful or tragic. Unlike the idea that every cloud has a silver lining—that something positive can always be found in everything negative—the principle of changing poison into medicine explains that we can transform even the most horrific tragedy into the very thing we need to become happier than we currently are. "It’s a powerful book that helps you cultivate your inner strength to face hard times with a fearless heart.    It’s more than a book.  It’s a set of tools for life." -- J. D. Meier The book is THE UNDEFEATED MIND: On the Science of Constructing an Indestructible Self.  See http://alexlickerman.com and a review of his book at http://sourcesofinsight.com/book-review-the-undefeated-mind/ 00:29:00Powerful Patientnopsychology,resilience,hope,compliance,partnership with doctorsIn his book, The Undefeated Mind, physician Alex Lickerman argues that resilience isn't something with which only a fortunate few of us have been born, but rahttps://www.blogtalkradio.com/powerful-patient/2014/05/15/electrocardiogram-ecg-at-home-phone-it-inHealthhttps://www.blogtalkradio.com/powerful-patient/2014/05/15/electrocardiogram-ecg-at-home-phone-it-in/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/05/15/electrocardiogram-ecg-at-home-phone-it-inThu, 15 May 2014 19:00:00 GMTElectrocardiogram (ECG) at home? Phone it in!Mike and Joyce talk with the CEO of AliveCor, makers of an attachment for a SmartPhone that allows patients to record their own electrocardiogram (ECG) wherever they are, and provide this important data to their doctor remotely. This is one of a growing number of new applications that utilize the power of a SmartPhone, its compute power, camera, and voice capability, to put more medical data into the hands of patients. This is all about empowering YOU! It's amazing stuff -- come listen in. 00:31:00Powerful Patientnosmartphone,iphone,android,ECG,electrocardiogramMike and Joyce talk with the CEO of AliveCor, makers of an attachment for a SmartPhone that allows patients to record their own electrocardiogram (ECG) whereverhttps://www.blogtalkradio.com/powerful-patient/2014/05/08/e-patient-dave-says-let-patients-helpHealthhttps://www.blogtalkradio.com/powerful-patient/2014/05/08/e-patient-dave-says-let-patients-help/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/05/08/e-patient-dave-says-let-patients-helpThu, 08 May 2014 19:00:00 GMTe-Patient Dave says "Let Patients Help!"Dave deBronkart has a well-earned reputation as an e-Patient.  An internationally recognized speaker, author, and health policy advisor, he has words of strength for patients for sure.   In addition, he works with physicians, hospitals, and pharmaceutical companies to help them Let Patients Help! When most manufacturers decide to create a new product, they do market research and conduct focus groups to determine in advance what the consumers want. In medicine, it's mostly about what the doctors want. But the doctors are not the end-user consumers in medicine, they are talented and experienced personnel, but the end-user consumers are the patients. Come hear what Dave believes are the many ways that Patients can help improve healthcare. See also Dave's new book, Let Patients Help! A patient engagement handbook - how doctors, nurses, patients and caregivers can partner for better health care.  http://www.epatientdave.com/let-patients-help/ Audio clip credits: Gimme My DaM Data – Maastricht, 2011 Posted by WellApps, https://www.youtube.com/watch?v=0b4li7N_7Ck Music Video by the Collaborative Agency Group, 2013 https://www.youtube.com/watch?v=iqJKTWYHf4s 00:31:00Powerful Patientnodrug development,healthcare,healthcare reformDave deBronkart has a well-earned reputation as an e-Patient.  An internationally recognized speaker, author, and health policy advisor, he has words of strengthttps://www.blogtalkradio.com/powerful-patient/2014/05/01/innovative-efforts-toward-affordable-medicationshttp://www.iowapdc.org ]]>http://www.iowapdc.org ]]>Healthhttps://www.blogtalkradio.com/powerful-patient/2014/05/01/innovative-efforts-toward-affordable-medications/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/05/01/innovative-efforts-toward-affordable-medicationsThu, 01 May 2014 19:00:00 GMTInnovative Efforts toward Affordable Medicationshttp://www.iowapdc.org ]]>Jon-Michael Rosmann of the Iowa Prescription Drug Corporation joins Joyce to talk about their efforts to provide affortable prescription drugs to the people of Iowa. The Iowa Prescription Drug Corporation is a non-profit organization established in 2001 to provide affordable medication access to Iowans in need of assistance. Its initial programs focused on providing affordable medications to Medicare eligible Iowans. Since then their mission has expanded to include their state's safety-net patients. Today they focus on creating innovative solutions that provide low-cost pharmaceutical access to the most vulnerable populations while generating significant cost savings across health systems. We will talk about some of these programs, and how they might be extended to people in other states. For more information, see <a href="http://www.iowapdc.org">http://www.iowapdc.org</a> 00:30:00Powerful Patientnohealthcare,medications,costJon-Michael Rosmann of the Iowa Prescription Drug Corporation joins Joyce to talk about their efforts to provide affortable prescription drugs to the people ofhttps://www.blogtalkradio.com/powerful-patient/2014/04/23/diagnosing-a-rare-disease--a-case-in-irelandHealthhttps://www.blogtalkradio.com/powerful-patient/2014/04/23/diagnosing-a-rare-disease--a-case-in-ireland/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/04/23/diagnosing-a-rare-disease--a-case-in-irelandWed, 23 Apr 2014 23:00:00 GMTDiagnosing a rare disease - a case in IrelandMike and Joyce speak with Gloria in Ireland.  She shares her family's adventure in achieving a diagnosis of her daughter first for a brain tumor, and then for a rare syndrome, von Hippel-Lindau (VHL) which has implications for other kinds of tumors as well. We learn how her persistence was essential in getting to a correct diagnosis and appropriate treatment for her daughter, who is now doing very well.  There are lessons for all of us in trusting our own instincts, and in knowing what is normal and what is unusual in your own family members.  The doctors bring their knowledge of the science and of sorting out what diagnosis might be right.  The patient and the family bring their description of the symptoms the sequence of events, and the pattern of when the symptoms are better or worse.  It is only through this partnership that we can get to a diagnosis, especially of a rare disease. 00:44:00Powerful Patientnobrain tumor,kidney cancer,von Hippel-Lindau,VHL,rare diseaseMike and Joyce speak with Gloria in Ireland.  She shares her family's adventure in achieving a diagnosis of her daughter first for a brain tumor, and then for ahttps://www.blogtalkradio.com/powerful-patient/2014/04/17/radiation-protection-in-medicine--world-view-1Healthhttps://www.blogtalkradio.com/powerful-patient/2014/04/17/radiation-protection-in-medicine--world-view-1/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/04/17/radiation-protection-in-medicine--world-view-1Thu, 17 Apr 2014 21:00:00 GMTRadiation Protection in Medicine - World ViewIn the U.S., when we ask about radiation in medical imaging, we are usually just told not to worry about it. “It’s less radiation than you get flying across the Atlantic.” “The benefits of imaging outweigh the risks.” All that is true, and yet, we can’t helping worrying a bit. There are people in the world who take this question very seriously, none more than Dr. Madan Rehani, Director of Radiation Protection at the International Atomic Energy Agency in Vienna, Austria. Dr. Rehani and his colleagues have studied the use of radiation in medicine worldwide and are working to optimize its use. In this interview, Joyce speaks with Dr. Rehani about radiation in medical imaging. Medical imaging that uses ionizing radiation include Computed Tomography (CT), Mammography, and Fluoroscopy. The first question to ask is: is this the best type of imaging test to use to answer the medical question? Or might another modality that does not use ionizing radiation (such as MRI or Ultrasound) be used instead? Often MRI or Ultrasound will do the job just as well. But there are circumstances where CT is in fact needed: Dr Rehani talks about the recent advances in standardizing the terminology and calculations used by the various manufacturers of CT machines. CT dose index (CTDI)Dose Length Product (DLP) giving us standard measures of the radiation delivered to the patient. And don’t forget to give us your own opinions at http://bit.ly/rpm-safety 00:38:00Powerful Patientnocancer,computed tomography,CT,kidney cancer,medical imagingIn the U.S., when we ask about radiation in medical imaging, we are usually just told not to worry about it. “It’s less radiation than you get flying across thehttps://www.blogtalkradio.com/powerful-patient/2014/04/10/wind-river--taking-the-sting-out-of-cancerhttp://www.windriverservices.org ]]>http://www.windriverservices.org ]]>Healthhttps://www.blogtalkradio.com/powerful-patient/2014/04/10/wind-river--taking-the-sting-out-of-cancer/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/04/10/wind-river--taking-the-sting-out-of-cancerThu, 10 Apr 2014 19:00:00 GMTWind River - taking the sting out of cancerhttp://www.windriverservices.org ]]>Shannon and Dave know what it's like to go through the anxiety and pain of a cancer diagnosis and treatment.  They found themselves comforted by Nature.  They have created an experience for people with cancer to help them find comfort and inspiration in the beautiful woods of North Carolina. "After our own experience with Shannon's breast cancer in 2003, we became aware that surviving cancer requires not just physical stamina, but ALSO time to process the many emotional and spiritual challenges it brings.   "Together we have created a place where people diagnosed with cancer come to deal with the difficult aspects of cancer, meet others and find strength. "Our motivation is to bring together people who want to further explore their cancer journey, focusing on living more fully and authentically -  mind, body & spirit.  Personally, we are strong believers in giving back, simplifying, laughter, friendship, and spending time in nature." Mike and Joyce speak with Shannon and Dave about how they developed the concept of Wind River Cancer Wellness Retreats. For more information, see <a href="http://www.windriverservices.org">http://www.windriverservices.org</a> 00:10:00Powerful Patientnocancer,caregiving,cancer treatment,meditationShannon and Dave know what it's like to go through the anxiety and pain of a cancer diagnosis and treatment.  They found themselves comforted by Nature.  They hhttps://www.blogtalkradio.com/powerful-patient/2014/04/03/making-the-best-of-time-with-your-family-physicianHealthhttps://www.blogtalkradio.com/powerful-patient/2014/04/03/making-the-best-of-time-with-your-family-physician/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/04/03/making-the-best-of-time-with-your-family-physicianThu, 03 Apr 2014 17:00:00 GMTMaking the best of time with your family physicianDr. Stephen Meyers of Oak Ridge, North Carolina, joins Mike and Joyce to talk about the steps being taken by his group os primary care physicians to be able to provide care to an increasing number of people You can help yourself and your own physician by following his steps to prepare for a visit with your doctor.  You will have a more satisfying visit and will make more progress if you prepare. Dr. Meyers' group is optimizing their time by using hospitalists to visit and care for the hospitalized patients, staying in communication with them as needed during the hospitalization, and returning the patient to their care on discharge. Dr. Meyers is also the Medical Director of the Physicians Assistants training program at High Point University in nearby Greenville, North Carolina.  Because there will be a sharp rise in the number of people who are insured and need primary care, and because of the shortage of primary care physicians, his group is committed to bringing Nurse Practitioners and Physicians' Assistants into their group to perform the basic functions and provide basic care, always calling in the primary care physician when the case seems more tricky and needs the doctor's broader training and experience.  Together these professionals will care for people as a team. It is fascinating to hear how a committed group of medical professionals in a rural area of the United States is preparing to be able to care for at least twice as many patients in this first year of implementation of the Affordable Care Act (also known as "Obamacare"). 00:29:00Powerful Patientnoprimary care,Obamacare,Affordable Care Act (ACA),nurse practitioner,hospitalistDr. Stephen Meyers of Oak Ridge, North Carolina, joins Mike and Joyce to talk about the steps being taken by his group os primary care physicians to be able tohttps://www.blogtalkradio.com/powerful-patient/2014/03/28/premature-baby-conquers-handicapsHealthhttps://www.blogtalkradio.com/powerful-patient/2014/03/28/premature-baby-conquers-handicaps/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/03/28/premature-baby-conquers-handicapsFri, 28 Mar 2014 15:30:00 GMTPremature Baby Conquers HandicapsSarah H. of Knoxville was born 12 weeks premature.  Before she left the hospital she had serious challenges to overcome.  But this tiny baby was also born with a strong spirit and a can-do attitude that have helped her through those and many additional challenges in the first 23 years of her life. Sarah is a member of Club Vibes (http://www.club-vibes.org/) an organization created by John and Sue Buckley to assist blind and visually impaired young people in the Knoxville area to live independent and productive lives by identifying their unique capacities and developing their individual strengths. They recruit "pilots" who steer tandem bicycles while a visually impaired young person "stokes" in the rear. Sarah and Sue join Mike and Joyce to talk about Sarah's medical journey and her outstanding academic journey which she hopes will lead her to a career in medicine. 00:33:00Powerful Patientnopremature baby,staph infection,amputation,prosthesis,handicapped athleteSarah H. of Knoxville was born 12 weeks premature.  Before she left the hospital she had serious challenges to overcome.  But this tiny baby was also born withhttps://www.blogtalkradio.com/powerful-patient/2014/03/20/brian-loew-and-inspirecomHealthhttps://www.blogtalkradio.com/powerful-patient/2014/03/20/brian-loew-and-inspirecom/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/03/20/brian-loew-and-inspirecomThu, 20 Mar 2014 11:00:00 GMTBrian Loew and Inspire.comBrian Loew, CEO of Inspire.com, knows every day that he is making a positive impact in people's lives.  At Inspire.com you will find thousands of support groups on a myriad of topics that connect people with similar challenges, while guarding their privacy.  Here are some samples: Addiction - 12 groups  Blood and lymphatic disorders - 43 groups Caregivers - 16 groups Diet and nutrition - 17 groups  Fitness and exercise - 8 groups  Rare diseases- 51 groups Cancer - 63 groups Brian speaks with Joyce and Mike about what inspired him to start this platform, and about his plans for its future. http://www.pharmaphorum.com/articles/rare-disease-patients-are-talking-%E2%80%93-are-you-listening http://vimeo.com/63539970 00:30:00Powerful Patientnocancer,addiction,caregivers,diet and nutrition,fitness and exerciseBrian Loew, CEO of Inspire.com, knows every day that he is making a positive impact in people's lives.  At Inspire.com you will find thousands of support groupshttps://www.blogtalkradio.com/powerful-patient/2014/03/13/messages-to-cancer-survivorsHealthhttps://www.blogtalkradio.com/powerful-patient/2014/03/13/messages-to-cancer-survivors/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/03/13/messages-to-cancer-survivorsThu, 13 Mar 2014 19:00:00 GMTMessages to Cancer SurvivorsJoyce will be speaking at the Kidney Cancer Survivors' Meeting at Dana Farber/Harvard Cancer Center on Friday, March 14. Mike Lawing and Billy Foster, long-time survivors of kidney cancer, join her to talk about what they would say to a room full of cancer survivors. Cancer is never "one and done" -- there is always the threat of recurrence, and the emotions generated by an encounter with cancer can be profound.  Mike and Billy have learned lessons for keeping themselves on an even keel and their cancers at bay for nearly two decades each. Come join us for the conversation.   00:36:00Powerful Patientnokidney cancer,cancer survivorshipJoyce will be speaking at the Kidney Cancer Survivors' Meeting at Dana Farber/Harvard Cancer Center on Friday, March 14. Mike Lawing and Billy Foster, long-timhttps://www.blogtalkradio.com/powerful-patient/2014/03/06/why-participate-in-a-clinical-trialHealthhttps://www.blogtalkradio.com/powerful-patient/2014/03/06/why-participate-in-a-clinical-trial/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/03/06/why-participate-in-a-clinical-trialThu, 06 Mar 2014 20:00:00 GMTWhy Participate in a Clinical TrialAllison Risha, RN, BSN, OCN, a nursing program coordinator from the Levine Cancer Institute in Charlotte, North Carolina, joins Mike and Joyce to talk about the current state of clinical trials for genitourinary cancers. Ms. Risha has worked in many aspects of cancer treatment, and is currently a planner and organizer of programs for staff members and patients. Please join us, and bring your own questions about clinical trials, what they offer beyond standard treatments, and what to think about when considering participation in a clinical trial. 00:34:00Powerful Patientnokidney,bladder,prostate,genitourinary cancers,clinical trialsAllison Risha, RN, BSN, OCN, a nursing program coordinator from the Levine Cancer Institute in Charlotte, North Carolina, joins Mike and Joyce to talk about thehttps://www.blogtalkradio.com/powerful-patient/2014/02/27/celebrating-rare-disease-dayHealthhttps://www.blogtalkradio.com/powerful-patient/2014/02/27/celebrating-rare-disease-day/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/02/27/celebrating-rare-disease-dayThu, 27 Feb 2014 20:00:00 GMTCelebrating Rare Disease DayDr. Ilene Sussman, Executive Director of the VHL Alliance, based in Boston, Massachusetts, speaks with Mike and Joyce about the celebration of Rare Disease Day being co-sponsored by the Alliance and the Massachusetts Biotechnology Council (MassBio), at the Massachusetts State House in Boston on February 28, 2014, 11-12 AM.   The VHL Alliance is dedicated to research, education, and support to improve diagnosis, treatment, and quality of life for those affected by Von Hippel-Lindau (VHL). von Hippel-Lindau (VHL) is a genetic form of cancer. VHL patients battle a series of tumors throughout their lives. The VHL gene is involved in many other forms of cancer. Curing VHL is one step closer to curing cancer! The Massachusetts Biotechnology Council (MassBio) is an association of more than 600 biotechnology companies, universities, academic institutions and others dedicated to advancing cutting edge research. MassBio is the leading advocate for Massachusetts’ world premier life sciences cluster. “We drive innovation by creating a forum for the biotechnology community to come together, educating the public and policy makers, influencing public policy and advancing the economic interests of individual companies, as well as the sector as a whole.” The Rare Disease Day event will take place Friday, February 28, 2014, 11-12 in the morning, in Nurse’s Hall at the Massachusetts State House, on Beacon Hill in Boston. For more details, see http://www.massbio.org/events/calendar/2305-rare_disease_day/event_detail 00:31:00Powerful Patientnobiotechnology,rare disease day,VHL von Hippel-LindauDr. Ilene Sussman, Executive Director of the VHL Alliance, based in Boston, Massachusetts, speaks with Mike and Joyce about the celebration of Rare Disease Dayhttps://www.blogtalkradio.com/powerful-patient/2014/02/20/flu-near-youHealthhttps://www.blogtalkradio.com/powerful-patient/2014/02/20/flu-near-you/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/02/20/flu-near-youThu, 20 Feb 2014 20:00:00 GMTFlu Near YouJoyce speaks with Rumi Chumara of the project Flu Near You, which tracks 40,000 weekly responses from volunteers about their health, and about any flu symptoms.  Their goal is to save lives from potentially deadly influenza by examining the ongoing trends in 2014, and in particular by observing the overall success rate of vaccinations. Flu Near You was created in partnership with the Boston Children’s Hospital’s HealthMap, an expansive globe-spanning project that tracks outbreaks of infectious diseases. Participants who register on Flu Near You are sent a weekly email that asks whether they have had a flu shot and whether they have experienced any symptoms from a provided list of ten potential answers including fever, fatigue and sore throat. Flu Near You is a site administered by Healthmap of Boston Children’s Hospital in partnership with the American Public Health Association and the Skoll Global Threats Fund. Flu Near You is open to anyone for browsing. Any individual living in the United States or Canada, 13 years of age or older, can register to complete brief, weekly surveys that help all of us learn more about the flu. Benefits See flu activity in your area Find nearby locations offering flu vaccines Complete quick surveys to advance our collective understanding of the flu Visualize flu trends Connect with local public health organizations For more information, see http://flunearyou.org 00:30:00Powerful Patientnoinvluenza,flu,vaccination,flu shotsJoyce speaks with Rumi Chumara of the project Flu Near You, which tracks 40,000 weekly responses from volunteers about their health, and about any flu symptoms.https://www.blogtalkradio.com/powerful-patient/2014/02/13/passing-it-forward--dipgHealthhttps://www.blogtalkradio.com/powerful-patient/2014/02/13/passing-it-forward--dipg/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/02/13/passing-it-forward--dipgThu, 13 Feb 2014 20:00:00 GMTPassing it forward - DIPGLouise Bunting is a mother in Northern Ireland whose daughter Rebekah was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a little known and particulatly aggressive form of brain cancer.  Louise is grateful to her community of friends, and to the Children's Hospice in her area who supported her daughter and all the family through the heart-wrenching experience of her daughter's last days. Since her daughter's death, Louise and her friends have raised nearly 10,000 UK pounds to support the hospice and help other families through serious illness. Mike and Joyce speak with Louise about her experience, about DIPG, and about turning her grief and that of her family and friends into positive action, passing forward the kindness that was shown to them.   00:33:00Powerful PatientnoDiffuse Intrinsic Pontine Glioma,DIPG,brain cancer,children's hospiceLouise Bunting is a mother in Northern Ireland whose daughter Rebekah was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a little known and particulatlhttps://www.blogtalkradio.com/powerful-patient/2014/02/06/what-your-doctor-would-like-to-say-to-youHealthhttps://www.blogtalkradio.com/powerful-patient/2014/02/06/what-your-doctor-would-like-to-say-to-you/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/02/06/what-your-doctor-would-like-to-say-to-youThu, 06 Feb 2014 20:00:00 GMTWhat your doctor would like to say to youDoctors were asked what they would say to their patients if they could. Mike and Joyce discuss their answers. Find out what your doctor REALLY thinks!   00:31:00Powerful PatientnoDoctors were asked what they would say to their patients if they could. Mike and Joyce discuss their answers. Find out what your doctor REALLY thinks!https://www.blogtalkradio.com/powerful-patient/2014/01/30/brain-injury-ruined-my-lifeHealthhttps://www.blogtalkradio.com/powerful-patient/2014/01/30/brain-injury-ruined-my-life/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/01/30/brain-injury-ruined-my-lifeThu, 30 Jan 2014 20:00:00 GMTBrain Injury Ruined my Life Kelly Buttiglieri of the Brain Injury Association of Massachusetts speak with Joyce and Mike about the impact that Traumatic Brain Injury (TBI) can have one someone's life.  Being knocked out cold -- on the playing field, in a car accident, in a fall, or by any other means -- presents a bruising or injury to the brain that needs to be taken very seriously and treated promptly and appropriately. For more information see http://www.biama.org     00:31:00Powerful Patientnotraumatic brain injury,TBI,mild traumatic brain injury,mtbi,concussionKelly Buttiglieri of the Brain Injury Association of Massachusetts speak with Joyce and Mike about the impact that Traumatic Brain Injury (TBI) can have one sohttps://www.blogtalkradio.com/powerful-patient/2014/01/23/rare-disease-united--one-in-ten-is-affected     

to achieve a diagnosis

    

to find a doctor who know anything about our rare disease

    

to find an appropriate treatment for the condition

    

to find others who understand and can provide coaching

    

to encourage drug development to alleviate or cure our disease.

Rare Disease United focuses on raising awareness among the general public in Rhode Island and Massachusetts, and helping to facilitate the gathering of people affected by rare diseases so that they can support one another. Come listen to the great plans Patty has for celebrating Rare Disease Day at the end of February 2014, and learning how you can join together with this energetic group and with other such groups worldwide. ]]>     

to achieve a diagnosis

    

to find a doctor who know anything about our rare disease

    

to find an appropriate treatment for the condition

    

to find others who understand and can provide coaching

    

to encourage drug development to alleviate or cure our disease.

Rare Disease United focuses on raising awareness among the general public in Rhode Island and Massachusetts, and helping to facilitate the gathering of people affected by rare diseases so that they can support one another. Come listen to the great plans Patty has for celebrating Rare Disease Day at the end of February 2014, and learning how you can join together with this energetic group and with other such groups worldwide. ]]>Healthhttps://www.blogtalkradio.com/powerful-patient/2014/01/23/rare-disease-united--one-in-ten-is-affected/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/01/23/rare-disease-united--one-in-ten-is-affectedThu, 23 Jan 2014 20:00:00 GMTRare Disease United - One in Ten is Affected     

to achieve a diagnosis

    

to find a doctor who know anything about our rare disease

    

to find an appropriate treatment for the condition

    

to find others who understand and can provide coaching

    

to encourage drug development to alleviate or cure our disease.

Rare Disease United focuses on raising awareness among the general public in Rhode Island and Massachusetts, and helping to facilitate the gathering of people affected by rare diseases so that they can support one another. Come listen to the great plans Patty has for celebrating Rare Disease Day at the end of February 2014, and learning how you can join together with this energetic group and with other such groups worldwide. ]]>Patricia Weltin, Founder and CEO of Rare Disease United, will speak with Mike and Joyce on Thursday, January 23. Patty's two daughters have a rare disease called "Hypermelanosis of Ito" (HI).  She is not looking to educate you about HI.  Instead she wants you to know that nearly 25% of the United States is affected, directly or indirectly, by some rare disease.  Each individual rare disease may be rare (affecting less than 1% of the population), but the experience of having a rare disease is not rare at all.  And each individual or family with a rare disease encounters the same hurdles over and over, throughout the country and the world: We all struggle: <ul>     <li>to achieve a diagnosis</li>     <li>to find a doctor who know anything about our rare disease</li>     <li>to find an appropriate treatment for the condition</li>     <li>to find others who understand and can provide coaching</li>     <li>to encourage drug development to alleviate or cure our disease.</li> </ul> Rare Disease United focuses on raising awareness among the general public in Rhode Island and Massachusetts, and helping to facilitate the gathering of people affected by rare diseases so that they can support one another. Come listen to the great plans Patty has for celebrating Rare Disease Day at the end of February 2014, and learning how you can join together with this energetic group and with other such groups worldwide. 00:36:00Powerful Patientnorare diseases,hypermelanosis of Ito,rare disease day,eurordisPatricia Weltin, Founder and CEO of Rare Disease United, will speak with Mike and Joyce on Thursday, January 23. Patty's two daughters have a rare disease callhttps://www.blogtalkradio.com/powerful-patient/2014/01/16/international-kidney-cancer-symposiumHealthhttps://www.blogtalkradio.com/powerful-patient/2014/01/16/international-kidney-cancer-symposium/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/01/16/international-kidney-cancer-symposiumThu, 16 Jan 2014 20:00:00 GMTInternational Kidney Cancer SymposiumMike Lawing attended the Kidney Cancer Symposium in Chicago in October 2013, a forum for the top kidney cancer doctors in the world to share ideas. He has prepared a report for the KCA, presenting the highlights of the meeting in patient-approachable language. He answers questions from Joyce and from our listeners about this important meeting. Five years ago, there were no drugs to combat kidney cancer, and kidney cancer was notoriously unresponsive to classic chemotherapy. Now there is an array of new drugs to help, and there is more hope for people with kidney cancer than ever before. Mike and Joyce talk about the progress and challenges presented at the KCA’s Annual Kidney Cancer Symposium. Online access to the Symposium Summary http://bit.ly/kcasympo2014 the 2013 and 2012 summaries are accessible from the KCA Page: http://bit.ly/kcasympo (listed as Patient-Friendly Summaries) View 2013 Presentations | View Abstracts | View Patient-friendly Summary View 2012 Presentations | View Abstracts | View Patient-friendly Summary - See more at: http://bit.ly/kca-mededu 00:34:00Powerful Patientnocancer,kidney cancer,oncology,cancer treatment,Cancer TreatmentMike Lawing attended the Kidney Cancer Symposium in Chicago in October 2013, a forum for the top kidney cancer doctors in the world to share ideas. He has prepahttps://www.blogtalkradio.com/powerful-patient/2014/01/09/betty-garrett--caring-for-caregiversHealthhttps://www.blogtalkradio.com/powerful-patient/2014/01/09/betty-garrett--caring-for-caregivers/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/01/09/betty-garrett--caring-for-caregiversThu, 09 Jan 2014 20:00:00 GMTBetty Garrett - Caring for CaregiversBetty Garrett speaks with Joyce and Mike about her non-profit organization, Caregivers4Cancer. Unless you have a medical degree or background, chances are you don’t know how to care for a cancer patient. As the wife of a cancer patient, Betty Garrett was thrust into this role and didn’t have a clue what to do, but she learned quickly -- although not always easily. As Betty says, "This is the scariest roller coaster ride of your life!" If you are: dealing with a loved one or friend who has cancertrying to get through the maze of healthcareneed a resource to help you stay the coursefeel overwhelmed but don’t want your loved one to know Caregivers4Cancer was created to help you. Caregivers4Cancer was created because she has been through all of these things and wants to help you through your own journey. Caregivers4Cancer exists to educate and assure caregivers and oncology teams there are ways to ease the journey’s relentless demands. You can emerge on the other end with less stress, more energy and a feeling of accomplishment that you did all you could for your loved one. For more information, see http://www.caregivers.com   00:32:00Powerful Patientnocancer,caregivers,hospice,oncology,cancer treatmentBetty Garrett speaks with Joyce and Mike about her non-profit organization, Caregivers4Cancer. Unless you have a medical degree or background, chances are youhttps://www.blogtalkradio.com/powerful-patient/2014/01/02/computers-robots-and-games-to-promote-healing-1http://newmanlab.mit.edu/#The%20Newman%20Lab ]]>http://newmanlab.mit.edu/#The%20Newman%20Lab ]]>Healthhttps://www.blogtalkradio.com/powerful-patient/2014/01/02/computers-robots-and-games-to-promote-healing-1/#commentshttp://www.blogtalkradio.com/powerful-patient/2014/01/02/computers-robots-and-games-to-promote-healing-1Thu, 02 Jan 2014 20:30:00 GMTComputers, Robots, and Games to promote healinghttp://newmanlab.mit.edu/#The%20Newman%20Lab ]]> Joyce and Mike speak with Dr. Hermano Igo Krebs of MIT's Newman Lab for Biomechanics and Human Rehabilitation.  His group is inventing robots -- machines to assist patients with rehabilitation from brain injury  - from stroke to cerebral palsy to accidents and surgery.  Dr. Krebs describes his research best: "Underlying my research is one overarching goal: to revolutionize the practice of rehabilitation medicine by applying robotics and information technology that can assist, enhance, and quantify rehabilitation -- particularly neuro-rehabilitation. Unlike the efforts of predecessors who used robotics as an assistive technology for the disabled, my approach uses robots and computers to support and enhance the clinicians' productivity as they facilitate a disabled individual's functional recovery. "The embodiment of this goal is a new class of interactive, clinical devices.  Robotics and information technology can provide an overdue transformation of rehabilitation clinics from primitive manual operations to more technology-rich operations. "Robot-aids not only are more efficient in delivering certain routine physical and occupational therapy activities, but also provide a rich stream of data that assists in patient diagnosis, customization of the therapy, and maintenance of patient records (at the clinic and at home). Our research group pioneered the use of robots in three distinct areas, and since then has energetically promoted the concept (for more detail check <a href="http://newmanlab.mit.edu/#The%20Newman%20Lab" title="MIT Newman Lab for Biomechanics and Human Rehabilitation">http://newmanlab.mit.edu/#The%20Newman%20Lab</a> 00:29:00Powerful Patientnobrain injury,TBI,MTBI,stroke,physical therapyJoyce and Mike speak with Dr. Hermano Igo Krebs of MIT's Newman Lab for Biomechanics and Human Rehabilitation.  His group is inventing robots -- machines to ashttps://www.blogtalkradio.com/powerful-patient/2013/12/26/optimize-your-hearing-and-stay-in-the-conversationHealthhttps://www.blogtalkradio.com/powerful-patient/2013/12/26/optimize-your-hearing-and-stay-in-the-conversation/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/12/26/optimize-your-hearing-and-stay-in-the-conversationThu, 26 Dec 2013 20:00:00 GMTOptimize Your Hearing and Stay in the Conversation"Communication is a Team Sport," says Dr. Mel Miller of Treasure Valley Hearing in Boise, Idaho.  Dr. Miller joins Mike and Joyce to talk about how to make sure that communication works.  Dr. Miller holds hearing support groups and classes both for people experiencing hearing loss and for their family members.  It takes two people to have a conversation.  If one of them can't hear or can't comprehend what the speaker is saying, then communication is not happening.  Dr. Miller offers coaching for both parties to improve the odds that the intended communication is in fact getting through. We talk about tinnitus, 8th nerve damage, hearing, audiology, blood pressure, and being ready to admit that help is needed and to accept that help.  We also talk about depression among people with hearing loss.   00:31:00Powerful Patientnohearing,audiology,tinnitus,8th nerve damage,depression"Communication is a Team Sport," says Dr. Mel Miller of Treasure Valley Hearing in Boise, Idaho.  Dr. Miller joins Mike and Joyce to talk about how to make surehttps://www.blogtalkradio.com/powerful-patient/2013/12/19/8-ways-you-can-help-your-doctor-save-your-lifeHealthhttps://www.blogtalkradio.com/powerful-patient/2013/12/19/8-ways-you-can-help-your-doctor-save-your-life/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/12/19/8-ways-you-can-help-your-doctor-save-your-lifeThu, 19 Dec 2013 20:00:00 GMT8 Ways you can Help your Doctor Save Your LifeJoyce and Mike discuss eight tips for how to create teamwork with your doctor and help your doctor keep you well. 1. BE THERE Don’t ignore symptoms, ask for help. 2. MANAGE YOUR FEARS Don’t deny them, but manage them. Breathe. Gather data. Do you need to worry? 3. NEVER WITHHOLD CLUES Don’t expect your doctor to guess what you’re not saying. 4. KNOW YOUR GENES Understand genetic risk factors by making a family health tree and seeking genetic counseling. 5. KEEP A LOG Map your pain or discomfort by time of day, time of month, and what you eat. Take a copy for the doctor to keep in your file and review. 6. PLAY BALL Assemble a team of professionals who bring the right skills to the game. 7. TAKE NOTES. Take a friend or a tape recorder, because you may forget the details. 8. DO YOUR HOMEWORK Read up on your diagnosis and your tumor type. Could you develop more tumors or symptoms?   00:36:00Powerful Patientnohealth,wellness,medications,teamwork,cancerJoyce and Mike discuss eight tips for how to create teamwork with your doctor and help your doctor keep you well. 1. BE THERE Don’t ignore symptoms, ask for hehttps://www.blogtalkradio.com/powerful-patient/2013/12/12/tom-rath-eat-move-sleepHealthhttps://www.blogtalkradio.com/powerful-patient/2013/12/12/tom-rath-eat-move-sleep/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/12/12/tom-rath-eat-move-sleepThu, 12 Dec 2013 20:00:00 GMTTom Rath: Eat Move SleepEat healthy, keep your body in tune,and rest your body and mind.  Tom shares his strategies for staying well. Tom Rath is a best-selling author and a highly respected business consultant. He also has a rare disease. He has been living with tumors and the threat of cancer since he was 16. He has worked hard to learn how to manage those risks. Tom Rath speaks with Mike and Joyce about his most recent book, EAT MOVE SLEEP, in which he shares his personal learning and combines it with a great deal of outstanding research to create a phenomenal collection of insights and simple suggestions that you can implement beginning today. Among other insights, he shows us how the small choices we make every day in fact influence the way our genes express themselves. In other words, there are things we can do to soften the effects of the risk factors we were born with. You can live longer and better – more rested and happy and strong – by implementing his suggestions. “One of the most successful nonfiction writers of his generation, Tom Rath has produced a blockbuster book that offers readers deep insights alongside specific actions. Eat Move Sleep is a transformative work.” –Daniel Pink Please join us as Tom speaks with Mike and Joyce about EAT MOVE SLEEP. http://eatmovesleep.org 00:33:00Powerful Patientnogenetic disease,genetic risk factors,rare disease,rare disorderEat healthy, keep your body in tune,and rest your body and mind.  Tom shares his strategies for staying well. Tom Rath is a best-selling author and a highly rehttps://www.blogtalkradio.com/powerful-patient/2013/12/05/medical-tourism--why-and-howHealthhttps://www.blogtalkradio.com/powerful-patient/2013/12/05/medical-tourism--why-and-how/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/12/05/medical-tourism--why-and-howThu, 05 Dec 2013 20:00:00 GMTMedical Tourism - Why and HowJoe Harkins, Associate Editor of the Medical Tourism Association Journal, joins Mike and Joyce to talk about the growth of Medical tourism — going outside your home country for health care. Nearly a million Americans went outside the country for necessary health care in 2013. Employers who provide health care for their employees are taking advantage of medical tourism to save money. One employer has saved $10 million while providing quality health care for their employees. ABC’s Nightline reported on the economic advantages of medical tourism. http://www.medicaltourismcongress.com/blog/us-companies-consider-medical-tourism/ Joe speaks with Joyce and Mike about what people go outside the U.S. or other countries, and what destinations provide the best care. 00:34:00Powerful Patientnoeconomical healthcare,healthcare,medical tourismJoe Harkins, Associate Editor of the Medical Tourism Association Journal, joins Mike and Joyce to talk about the growth of Medical tourism — going outside yourhttps://www.blogtalkradio.com/powerful-patient/2013/11/29/jack-whelan-on-fighting-lymphomahttp://www.jack-whelan.com/whos_jack ]]>http://www.jack-whelan.com/whos_jack ]]>Healthhttps://www.blogtalkradio.com/powerful-patient/2013/11/29/jack-whelan-on-fighting-lymphoma/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/11/29/jack-whelan-on-fighting-lymphomaFri, 29 Nov 2013 04:00:00 GMTJack Whelan on Fighting Lymphomahttp://www.jack-whelan.com/whos_jack ]]>Diagnosed six years ago, now beating the then published life expectancy of 5-7 years of a rare incurable form of blood cancer, a lymphoplasmacytic lymphoma called Waldenstrom's Macroglobulinemia (WM), Jack Whelan is determined to help in the research, care and ultimate cure of this rare cancer which affects about 1200 new patients each year.  Jack is betting on Clinical Trials. WM has many similarities with Multiple Myeloma and non-Hodgkins Lymphoma; many of the chemotherapies, immunotherapies and other emerging B cell malignancy targeting treatments including biologic agents are used to battle this unique, uncommon blood cancer.    As Waldenstroms is an orphan blood cancer, it doesn't get much attention and no government-specific funding for research and the quest for a cure. However, there is a small but effective group of patients, caregivers, physicians, researchers and other medical and pharmaceutical professionals who through the efforts of the International Waldenstrom's Macroglobulinemia Foundation (IWMF) lead the charge in research and care of patients and caregivers living with this cancer.  Active volunteer/advocate with the Leukemia, Lymphoma Society, (LLS) supporter of Team in Training, Light the Night, currently supporting LLS, American Cancer Society (ACS) DFCI and others educating Massachusetts state legislators to get support for oral chemotherapy parity regulations, a move that will save all parties significant healthcare costs while providing pharmacy coverage (for pill-form chemotherapy) at the same rate for patients that would normally be covered when receiving chemotherapy in the infusion room.   Jack was recently featured on the cover of Cancer Today.   See more at: <a href="http://www.jack-whelan.com/whos_jack" title="www.jack-whelan.com">http://www.jack-whelan.com/whos_jack</a> 00:30:00Powerful Patientnolymphoplasmacytic lymphoma,Waldenstrom's Macroglobulinemia,leukemkia,blood cancerDiagnosed six years ago, now beating the then published life expectancy of 5-7 years of a rare incurable form of blood cancer, a lymphoplasmacytic lymphoma callhttps://www.blogtalkradio.com/powerful-patient/2013/11/21/mike-reports-on-the-kidney-cancer-symposiumHealthhttps://www.blogtalkradio.com/powerful-patient/2013/11/21/mike-reports-on-the-kidney-cancer-symposium/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/11/21/mike-reports-on-the-kidney-cancer-symposiumThu, 21 Nov 2013 20:00:00 GMTMike reports on the Kidney Cancer SymposiumMike Lawing attended the Kidney Cancer Symposium in Chicago in October 2013, a forum for the top kidney cancer doctors in the world to share ideas.  He is preparing a report for the KCA, presenting the highlights of the meeting in patient-approachable language.  Meanwhile, he shares his insights from this important meeting. Five years ago, there were no drugs to combat kidney cancer, and kidney cancer was notoriously unresponsive to classic chemotherapy.  Now there is an array of new drugs to help, and there is more hope for people with kidney cancer than ever before.  Mike and Joyce talk about the progress and challenges presented at the KCA's Annual Kidney Cancer Symposium.   00:49:00Powerful Patientnokidney cancer,survivors,targeted therapy,angiogenesis inhibitors,surgical techniquesMike Lawing attended the Kidney Cancer Symposium in Chicago in October 2013, a forum for the top kidney cancer doctors in the world to share ideas.  He is prepahttps://www.blogtalkradio.com/powerful-patient/2013/11/14/be-a-resilient-womanHealthhttps://www.blogtalkradio.com/powerful-patient/2013/11/14/be-a-resilient-woman/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/11/14/be-a-resilient-womanThu, 14 Nov 2013 20:00:00 GMTBe a Resilient Woman! Mike and Joyce speak with Dr. Patricia O'Gorman about her 7 Steps to becoming a Resilient Woman. Too many times, women sabotage themselves with girly thoughts, convincing themselves that their life's disappointments are a result of being too tall, too pretty, too fat, too skinny, too smart, not smart enough or not sexy enough. Simply put, our girly thoughts can be our greatest hurdle to making positive progress in our lives, both personally and professionally.   Girly thoughts not only stifle women from achieving their full potential, but they slash a women's sense of value or self-worth because they remind us that we don't fall in line with the latest version of what is culturally desirable and acceptable.  Dr. O'Gorman shows us that a resilient life is achieved by how we react to situations in our lives, not by the things that happen to us. 00:31:00Powerful Patientnowoman power,flexibility,personal power,strength,courageMike and Joyce speak with Dr. Patricia O'Gorman about her 7 Steps to becoming a Resilient Woman. Too many times, women sabotage themselves with girly thoughts,https://www.blogtalkradio.com/powerful-patient/2013/11/07/radiation-protectionHealthhttps://www.blogtalkradio.com/powerful-patient/2013/11/07/radiation-protection/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/11/07/radiation-protectionThu, 07 Nov 2013 21:00:00 GMTProtection from RadiationMichael Fonstein of Cleveland Biolabs talked with Joyce in March 2010 about a new drug developed by his company that protects humans from the effects of radiation. The United States and other countries have been investing in this technology primarily for defense purposes, but medically it can also serve to assist in reducing the harmful effects of radiation from therapeutic radiation treatments for cancer, allowing the patient to continue treatment longer and reducing the side effects of the treatment. In 2010 this treatment was just going into clinical trials. We are planning to interview a representative of Cleveland Biolabs in the coming weeks to get an update on the progress of this research. This program will serve to provide a base of understanding of the problem and the approach Cleveland Biolabs is pursuing. For more information, see http://www.cbiolabs.com 00:33:00Powerful Patientnoradiation therapy,dirty bombs,terrorism,radiation poisoning,public healthMichael Fonstein of Cleveland Biolabs talked with Joyce in March 2010 about a new drug developed by his company that protects humans from the effects of radiatihttps://www.blogtalkradio.com/powerful-patient/2013/10/31/report-from-joyces-travelsHealthhttps://www.blogtalkradio.com/powerful-patient/2013/10/31/report-from-joyces-travels/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/10/31/report-from-joyces-travelsThu, 31 Oct 2013 19:00:00 GMTReport from Joyce's Travels Joyce is traveling to ten cities in September and October.  Mike interviews her about who she saw, what she did, and what she learned. Quick summary: Sept 20-21, Ann Arbor, Michigan Sept 28, London, England Oct 5-8, Budapest, Hungary Oct 10, Oxford, England Oct 12, Cardiff, Wales Oct 13-15, Belfast, Northern Ireland Oct 17, Dublin, Republic of Ireland Oct 23, Nottingham, England Oct 24, Birmingham, England Oct 27, Manchester, England For more details, see http://www.facebook.com/vhlfa/events See also Blog Posts at http://www.powerfulpatient.org/blog 00:30:00Powerful Patientnopatient registry,VHL,HLRCC,BHD,patient supportJoyce is traveling to ten cities in September and October.  Mike interviews her about who she saw, what she did, and what she learned. Quick summary: Sept 20https://www.blogtalkradio.com/powerful-patient/2013/10/17/a-conversation-with-deb-violetteHealthhttps://www.blogtalkradio.com/powerful-patient/2013/10/17/a-conversation-with-deb-violette/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/10/17/a-conversation-with-deb-violetteThu, 17 Oct 2013 19:00:00 GMTA Conversation With Deb Violette In this episode Mike talks with his long-time friend and dedicated Lung Cancer Advocate, Deb Violette. In 1998 Deb’s world was turned upside down when she was diagnosed with stage III-A lung cancer and was given a 10% chance of living 2 years. As she thought about her grim prognosis one evening, it suddenly dawned on her that she should be focusing on the 10% chance of survivorship. Since then Deb has gone on to share hope and inspiration to countless others, especially in her home state of Maine where she is the Founder and President of Free ME from Lung Cancer http://www.freemefromlungcancer.org/ She is a regular participant in the programs of national cancer research organizations including the AACR, ASCO, and is a Member of the International Association of the Study of Lung Cancer (IASLC) and the Maine Cancer Consortium. Deb is an inspiration to everyone who is aspiring to be a Powerful Patient. 00:30:00Powerful PatientnoLung Cancer,Advocacy,Healthcare,Maine,ResearchIn this episode Mike talks with his long-time friend and dedicated Lung Cancer Advocate, Deb Violette. In 1998 Deb’s world was turned upside down when she washttps://www.blogtalkradio.com/powerful-patient/2013/10/10/managing-caregiver-stressHealthhttps://www.blogtalkradio.com/powerful-patient/2013/10/10/managing-caregiver-stress/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/10/10/managing-caregiver-stressThu, 10 Oct 2013 19:00:00 GMTManaging Caregiver StressJoyce talks with Eve (not her real name) about her experience as a caregiver through her husband’s chronic illness and death. She then talks with Dr. Sheryle Baker about Eve’s experience, and about the changes that occur in the dynamics between the patient and the caregiver, and how we can all help the caregiver survive. This is a one hour show. About Our Guests Eve (not her real name) is the widow of a man who had von Hippel-Lindau disease, and a series of brain and kidney tumors that led him to a course of dialysis and eventually to his death. Eve graciously shares the pain of her experience so that we can learn from her experience. Sheryle Baker, M.A., LMHC., is Executive Director of Life Center of Tampa, Florida, a non-profit agency that provides counseling for victims of violent crime, and people who have lost loved ones, through chronic illness or sudden death. She a psychotherapist specializing in bereavement and traumatic loss and incident, About Caregiver Stress It is important to manage caregiver stress while you are going through the experience. If the patient is willing to negotiate the changes in roles and responsibilities that occur, that can help. Others around the caregiver can provide important support and outlets for stress. For both the patient and the caregiver, there are a series of losses, culminating in the death of the loved one. Each of these losses must be grieved, and the grief worked through, or the stress turns outward (as anger) or inward (as bitterness and even illness). Often when we are in a traumatic incident we muddle on through and seem to be doing fine. After the peak of the stress has passed, however, we crash. This “post-traumatic stress” can be devastating, and requires work to get through it. 01:00:00Powerful Patientnocaregiving,stress management,grief,support groups,breathingJoyce talks with Eve (not her real name) about her experience as a caregiver through her husband’s chronic illness and death. She then talks with Dr. Sheryle Bahttps://www.blogtalkradio.com/powerful-patient/2013/10/03/energy-healing-and-cfsmeFoundation for Integrated Energy Healing in Somerset, UK.   Fiona talks with Mike and Joyce about her own journey back to wellness following Chronic Fatigue Syndrome, and the many people she has helped with Energy Healing. ]]>Foundation for Integrated Energy Healing in Somerset, UK.   Fiona talks with Mike and Joyce about her own journey back to wellness following Chronic Fatigue Syndrome, and the many people she has helped with Energy Healing. ]]>Healthhttps://www.blogtalkradio.com/powerful-patient/2013/10/03/energy-healing-and-cfsme/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/10/03/energy-healing-and-cfsmeThu, 03 Oct 2013 19:00:00 GMTEnergy Healing and CFS/MEFoundation for Integrated Energy Healing in Somerset, UK.   Fiona talks with Mike and Joyce about her own journey back to wellness following Chronic Fatigue Syndrome, and the many people she has helped with Energy Healing. ]]>Energy Healing is a category of healing arts that can help with many mysterious complaints for which there are no names in Western medicine, but which are very real in the traditional medicine of India, China, and Japan.  They have to do with getting the energy in your body back into balance following trauma, surgery, or illness, even losing a long-time friend to death or divorce. In 2003, she caught a cold, and was diagnosed with Chronic Fatigue Syndrome (also known as Myalgic Encephalopathy or ME_ – from one day to the next. She was deeply emotionally, physically and mentally exhausted, and that just wasn’t going to go away quickly. For the next three years, she was in what one of her clients calls the "hell of Chronic Fatigue Syndrome / ME." She had to be careful about everything she did. "I couldn’t listen to the radio or music or watch television, as it tired me out; I could only go outside for a short time – and once a day at the most; I had to be careful about the number of people I talked to in a day (a short telephone conversation could tire me out), and I missed out on the very early years of my two lovely nieces. I had a continual what I called “brain fog” which meant it was hard to concentrate on anything – reading, writing, or adding up numbers (I worked as an accountant!)" The treatments suggested by her doctors did little to help.  One day she tried Reiki, and felt her tension ebbing away.  She began exploring Reiki and other Energy Healing modalities, studying at the <a href="http://www.fieh.co.uk/">Foundation for Integrated Energy Healing</a> in Somerset, UK.   Fiona talks with Mike and Joyce about her own journey back to wellness following Chronic Fatigue Syndrome, and the many people she has helped with Energy Healing. 00:30:00Powerful Patientnochakras,complementary medicine,holistic medicine,Reiki,chronic fatigue syndromeEnergy Healing is a category of healing arts that can help with many mysterious complaints for which there are no names in Western medicine, but which are veryhttps://www.blogtalkradio.com/powerful-patient/2013/09/26/redefining-cancerHealthhttps://www.blogtalkradio.com/powerful-patient/2013/09/26/redefining-cancer/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/09/26/redefining-cancerThu, 26 Sep 2013 19:00:00 GMTRedefining Cancer New cancer recommendations made by a National Cancer Institute (NCI) working group could reduce unnecessary treatment by eliminating the fear factor linked with some early-stage cancers. However, there is a need for diagnostic tests that can recognize whether these early conditions could become life-threatening, states an analyst with research and consulting firm GlobalData. The NCI scientists recommended that words like ‘cancer’, ‘neoplasia’ and ‘carcinoma’ should be removed from premalignant conditions in order to reduce the incidences of over diagnosis and to prevent patients from undergoing irrelevant surgery, radiation, or drug treatment. “The implementation of this recommendation will help make patients and physicians more comfortable with refraining from unnecessarily treating benign disease,” says Cheryl S. Gradziel, Ph.D, oncology analyst with GlobalData. “The term cancer and its synonyms are alarming, which leads patients to strongly believe that premalignant conditions such as ductal carcinoma in situ, or high-grade prostatic intraepithelial neoplasia should be treated aggressively, when this is often not the case.” As people become more aware and screening for many common cancers increases, more tumors are being treated at early stages. But, those screenings have resulted in more frequent diagnoses of abnormalities that would never become life threatening, which is what the NCI is trying to minimize by redefining the terms surrounding cancer. It will be important to invest in creating tests to determine the risk level of low-grade tumors. “There is ample market opportunity for such tests, and their approval and subsequent adoption will have the greatest impact towards reducing the over diagnosis and overtreatment of cancers in the US,” says Gradziel.   00:30:00Powerful Patientnocancer,neoplasia,carcinoma,overtreatment,benign diseaseNew cancer recommendations made by a National Cancer Institute (NCI) working group could reduce unnecessary treatment by eliminating the fear factor linked withttps://www.blogtalkradio.com/powerful-patient/2013/09/19/mental-health-issues-of-diabetesHealthhttps://www.blogtalkradio.com/powerful-patient/2013/09/19/mental-health-issues-of-diabetes/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/09/19/mental-health-issues-of-diabetesThu, 19 Sep 2013 19:00:00 GMTMental Health Issues of Diabetes Lee Ducat and Dr. Arthur Rubenstein speak with Mike and Joyce about their upcoming conference, "Mental Health Issues of Diabetes," to be held in Philadelphia on October 7.  For more information about registration and a copy of the complete agenda, please see http://www.mhidglobal.org   00:26:00Powerful Patientnodiabetes,stress,caregiving,self-care,mental healthLee Ducat and Dr. Arthur Rubenstein speak with Mike and Joyce about their upcoming conference, "Mental Health Issues of Diabetes," to be held in Philadelphia ohttps://www.blogtalkradio.com/powerful-patient/2013/09/12/patient-support--taking-care-of-michiganHealthhttps://www.blogtalkradio.com/powerful-patient/2013/09/12/patient-support--taking-care-of-michigan/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/09/12/patient-support--taking-care-of-michiganThu, 12 Sep 2013 19:00:00 GMTPatient Support - taking care of Michigan Fran Mott has been the Chapter Leader in Michigan for the VHL Family Alliance since 1994.  What that means is that she is in charge of taking care of people with von Hippel-Lindau throughout Michigan. Von Hippel-Lindau (VHL) is a genetic cancer syndrome, caused by one tiny misspelling in one gene, the VHL gene.  People who carry this alteration are at increased risk of having one or more tumors in a variety of places in the body.  There is currently no magical cure, it's all about watching out for issues, finding them early, and getting the right treatment at the right time. Fran has worked with physicians at University of Michigan Medical Center and other hospitals throughout the state to become more aware of VHL, diagnose it earlier and more accurately, and help people manage their health.  The University of Michigan has created a Clinical Care Center for VHL, part of the CCC program of the VHL Alliance. Fran is retiring this year after nearly 20 years of volunteer service to her neighbors throughout the state.  Joyce speaks with Fran about her experience as a patient herself, a mother, and a volunteer in service to others with this rare disease. The VHL Alliance will hold its Annual Meeting September 21, 2013, in Ann Arbor, with a dinner September 20 honoring Fran and Dr. James Montie of the U of M.  For information or to register for the meeting, see http://vhl.org/meetings 00:15:00Powerful PatientnoVHL,von Hippel-Lindau,volunteer,patient support,caregivingFran Mott has been the Chapter Leader in Michigan for the VHL Family Alliance since 1994.  What that means is that she is in charge of taking care of people wihttps://www.blogtalkradio.com/powerful-patient/2013/09/05/healing-ptsd-from-traumaHealthhttps://www.blogtalkradio.com/powerful-patient/2013/09/05/healing-ptsd-from-trauma/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/09/05/healing-ptsd-from-traumaThu, 05 Sep 2013 19:00:00 GMTHealing PTSD from TraumaMichele Rosenthal shares her story of surviving an illness so rare none of her doctors had seen it.  As a teenager she nearly died.  As an adult she has struggled to overcome the shock of medical trauma and its aftermath. Having suffered with undiagnosed PTSD for 25 years and then finding her path to wellness, Michele became a certified professional coach to enable her to help others.   "But my particular trauma is inconsequential. While we are all individual in our traumas, our Post-Traumatic Stress Disorder (PTSD) symptoms and experience is universal. I had a chat the other day with a Gulf War vet who experienced the same PTSD emotional landscape as I described myself. So there you are, PTSD is an equal opportunity invader. "When I returned from the hospital PTSD set in almost immediately. I developed a bad case of insomnia, flashbacks, and nightmares. I walked around every day terrified that another trauma would occur and this time, I would not survive. Various and subtle survival mechanisms got put in place. I was hypervigilant, hyperaroused and hyperaware. I attempted to control everything about my body and immediate surroundings. I strove to make myself feel safe – and drove myself crazy in the process." Michele dedicates herself to teaching audiences how to transform from powerless to powerful.  She shares what she has learned about facing life's challenges, personal strength, responsibility, and wellness.  She shares her three-step process for beginning to make changes immediately, both emotionally and scientifically. Michele Rosenthal's website is http://healmyptsd.com She also has a radio show called Changing Directions, and a book BEFORE THE WORLD INTRUDED.   You have enormous healing potential.  The goal is to learn how to access it and be well again.00:29:00Powerful Patientnoabuse,medical trauma,post traumatic stress disorder,PTSD,mental healthMichele Rosenthal shares her story of surviving an illness so rare none of her doctors had seen it.  As a teenager she nearly died.  As an adult she has strugglhttps://www.blogtalkradio.com/powerful-patient/2013/08/29/utilizing-your-own-powerhttp://www.LivingUnstoppable.com Platt was living his dream as a U.S. Marine when a cancer syndrome called von Hippel Lindau (VHL) exploded like a bomb on his life. It caused tumors in his brain and on his spine, as well as kidney cancer and the loss of his left eye. “I was mad at the world, and maybe part of me was afraid of the fact that I would be considered a handicapped person,” says Platt, who was retired from the Marines due to his health. After a personal journey of acceptance, however, Platt went on accomplish feats many world-class athletes wouldn’t consider. Along with his record-breaking Mississippi swim, he swam from Alcatraz Island to San Francisco with his hands and feet tied, and he was one of fewer than 300 people to have hiked the 2,100-mile southbound Appalachian Trail.]]>http://www.LivingUnstoppable.com Platt was living his dream as a U.S. Marine when a cancer syndrome called von Hippel Lindau (VHL) exploded like a bomb on his life. It caused tumors in his brain and on his spine, as well as kidney cancer and the loss of his left eye. “I was mad at the world, and maybe part of me was afraid of the fact that I would be considered a handicapped person,” says Platt, who was retired from the Marines due to his health. After a personal journey of acceptance, however, Platt went on accomplish feats many world-class athletes wouldn’t consider. Along with his record-breaking Mississippi swim, he swam from Alcatraz Island to San Francisco with his hands and feet tied, and he was one of fewer than 300 people to have hiked the 2,100-mile southbound Appalachian Trail.]]>Healthhttps://www.blogtalkradio.com/powerful-patient/2013/08/29/utilizing-your-own-power/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/08/29/utilizing-your-own-powerThu, 29 Aug 2013 19:00:00 GMTWhen Fear Pushes You, Push Back!http://www.LivingUnstoppable.com Platt was living his dream as a U.S. Marine when a cancer syndrome called von Hippel Lindau (VHL) exploded like a bomb on his life. It caused tumors in his brain and on his spine, as well as kidney cancer and the loss of his left eye. “I was mad at the world, and maybe part of me was afraid of the fact that I would be considered a handicapped person,” says Platt, who was retired from the Marines due to his health. After a personal journey of acceptance, however, Platt went on accomplish feats many world-class athletes wouldn’t consider. Along with his record-breaking Mississippi swim, he swam from Alcatraz Island to San Francisco with his hands and feet tied, and he was one of fewer than 300 people to have hiked the 2,100-mile southbound Appalachian Trail.]]> What if you could overcome your fears? What would you do, and how different would you be? “Most people have no idea of what they’re capable of; I think they’re almost trained by fear to not attempt the amazing things they dream of. But I’m living proof – if you can overcome fear, you can overcome almost anything,” says Jay Platt, whose feats include swimming across the Mississippi River while handcuffed, shackled and blindfolded. He’s subject of the new documentary, “Living Unstoppable,”  <a href="http://www.LivingUnstoppable.com">http://www.LivingUnstoppable.com</a> Platt was living his dream as a U.S. Marine when a cancer syndrome called von Hippel Lindau (VHL) exploded like a bomb on his life. It caused tumors in his brain and on his spine, as well as kidney cancer and the loss of his left eye. “I was mad at the world, and maybe part of me was afraid of the fact that I would be considered a handicapped person,” says Platt, who was retired from the Marines due to his health. After a personal journey of acceptance, however, Platt went on accomplish feats many world-class athletes wouldn’t consider. Along with his record-breaking Mississippi swim, he swam from Alcatraz Island to San Francisco with his hands and feet tied, and he was one of fewer than 300 people to have hiked the 2,100-mile southbound Appalachian Trail.00:30:00Powerful Patientnoovercoming fear,overcoming stress,managing your health,advocating for yourself,physical activityWhat if you could overcome your fears? What would you do, and how different would you be? “Most people have no idea of what they’re capable of; I think they’rhttps://www.blogtalkradio.com/powerful-patient/2013/08/22/tests-your-doctor-should-runHealthhttps://www.blogtalkradio.com/powerful-patient/2013/08/22/tests-your-doctor-should-run/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/08/22/tests-your-doctor-should-runThu, 22 Aug 2013 19:00:00 GMTTests Your Doctor Should RunJoyce and Mike speak with Dr. Michael Wald, Director of Nutrition Services at Integrated Medicine of Mount Kisco, New York http://www.intmedny.com Dr. Wald suggests six blood tests that you should ask your doctor to run. These are tests that hold critical clues to your well-being, mood and disease potential. “These tests should be a part of your overall care,” according to Dr. Michael Wald, known as “The Blood Detective.” They are standard tests that can be ordered by any physician. 1. Cardio CRP (c-reactive protein): 2. VAP blood lipids (cholesterol, etc.) 3. Homocysteine: 4. Hemoglobin A1c (HgA1c) 5. -Thyroglobulin antibodies and thyroid peroxidase antibodies: 6. Vitamin D3: For everyone, it is important to make sure your body has enough of the right ingredients to ensure accurate copying of genes whenever your body makes new cells — which is does constantly. When genes are not copied accurately, and genetic errors are introduced, that’s when bad things can happen. 00:30:00Powerful Patientnonutrition,vitamins,hormones,cancer,genetic risk factorsJoyce and Mike speak with Dr. Michael Wald, Director of Nutrition Services at Integrated Medicine of Mount Kisco, New York http://www.intmedny.com Dr. Wald sughttps://www.blogtalkradio.com/powerful-patient/2013/08/15/making-critical-medical-decisionsHealthhttps://www.blogtalkradio.com/powerful-patient/2013/08/15/making-critical-medical-decisions/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/08/15/making-critical-medical-decisionsThu, 15 Aug 2013 19:00:00 GMTMaking Critical Medical DecisionsIllness and disease often force people to face incredibly complex and emotional choices.  It is natural for patients to value and rely on their doctors' advice in such frightening situations.  Even so, the jargon that doctors use and the many treatment options available for patients can be overwhelming and confusing.   Dr. Peter Ubel, a physician, behavioral scientist and bioethicist at Duke University, presents a ground-breaking argument that will redefine the doctor-patient relationship. Examining medical cases including his own wife's diagnosis of breast cancer, Ubel identifies the need for true collaboration between doctors and patients calling for a "shared decision-making movement."  According to Dr. Ubel, it's not just about educating and motivating patients, it is also about preparing physicians to interact with informed patients.  Ubel supports a system-wide shift beginning with reconsidering who is admitted to medical schools and the curricula at those medical schools. He advocates retraining doctors about patient psychology, communication and behavior.   In his book, CRITICAL DECISIONS: HOW YOU AND YOUR DOCTOR CAN MAKE THE RIGHT MEDICAL CHOICES TOGETHER, he underscores the startling link between doctors' poor communication skills and the incidence of malpractice litigation.   Whether diagnosed with cancer, trying to understand the side effects of medication, or caring for a loved one, we all confront the medical establishment at some point in our lives.  Dr. Ubel proposes some very strong tools to help us make confident decisions about our health and well-being. Other books by Dr. Peter Ubel: PRICING LIFE; YOU ARE STRONGER THAN YOU THINK; and FREE MARKET MADNESS: Why Human Nature is at Odds with Economics -- and Why it Matters. 00:32:00Powerful Patientnopatient empowerment,medical errors,teamwork with doctors,medical decisions,treatment decisionsIllness and disease often force people to face incredibly complex and emotional choices.  It is natural for patients to value and rely on their doctors' advicehttps://www.blogtalkradio.com/powerful-patient/2013/08/08/utilizing-your-own-powerHealthhttps://www.blogtalkradio.com/powerful-patient/2013/08/08/utilizing-your-own-power/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/08/08/utilizing-your-own-powerThu, 08 Aug 2013 19:00:00 GMTUtilizing Your Own PowerWhen Josh Sommer was a freshman at Duke University, he was diagnosed with chordoma, a rare bone cancer for which there was a 30% cure rate, no approved drugs, little research and a seven year average survival. That was six years ago. “Frankly, being 18 years old and having a lot to look forward to I didn’t want to accept those statistics.” So he joined the only federally-funded chordoma research lab (coincidentally also at Duke) in the country, and spent two years hunting for new drugs. But the lab didn’t have the money or materials needed to make real progress: tumor tissue, cell lines and animal models. He dropped out of school to found the Chordoma Foundation, which to date has raised $2.5 million, funding research in 11 labs. His advice to people diagnosed with a potentially fatal disease? “You have a lot of power.”00:30:00Powerful Patientnocancer,diagnosis,overcoming fear,supporting research,finding a cureWhen Josh Sommer was a freshman at Duke University, he was diagnosed with chordoma, a rare bone cancer for which there was a 30% cure rate, no approved drugs, lhttps://www.blogtalkradio.com/powerful-patient/2013/08/01/whats-the-matter-with-meganHealthhttps://www.blogtalkradio.com/powerful-patient/2013/08/01/whats-the-matter-with-megan/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/08/01/whats-the-matter-with-meganThu, 01 Aug 2013 19:00:00 GMTWhat's the Matter with Megan? Megan Barron has lived her whole life with a condition called recessive dystrophic epidermolysis bullosa, a rare connective tissue disorder.  Her skin layers don't have the proper protein to hold them together, rendering my skin very fragile, and causing reoccurring blisters and wounds internally and externally. She has to wear bandages to protect her skin and any open areas from infection. 00:30:00Powerful Patientnoepidermolysis bullosa,dystrophic epidermolysis bullosa,recessive,connective tissue,dermatologyMegan Barron has lived her whole life with a condition called recessive dystrophic epidermolysis bullosa, a rare connective tissue disorder.  Her skin layers dhttps://www.blogtalkradio.com/powerful-patient/2013/07/25/improving-your-patient-skillsHealthhttps://www.blogtalkradio.com/powerful-patient/2013/07/25/improving-your-patient-skills/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/07/25/improving-your-patient-skillsThu, 25 Jul 2013 19:00:00 GMTImproving Your Patient Skills Maria Hester, M.D., is a physician in the Washington DC area who is committed to patient empowerment.  Through her corporation Savvier Health, she offers on-site workshops at area corporations to improve employeers' "patient skills."  Led by a practicing physician or nurse practitioner, the workshop aims to coach people to become confident health care consumers empowered to help expedite their own care, slash their own (and their employer's) health care costs, and communicate with medical professionals on an unprecedented level. Participants learn: - Invaluable 'patient skills' that will change their approach to health care forever - How to expedite their own diagnoses - Ways to slash their medical bills - How to get the most out of each and every doctor's appointment - Why many people are admitted to the hospital unnecessarily - How to make each hospitalization safer - How to minimize visits to the doctor - The ABC's of effective patient-doctor communication - How to decrease the risk of a medical error - Valuable tools to help them navigate the medical system - Tips to live longer, healthier lives - The basics of medical decision-making - How to prepare for medical visits in advance Her blog, "Teachable Moments," is carried in nationally recognized e-Hospitalist News, which is dedicated to teaching other physicians ways to empower their patients. Her book "Your Family Medical Record: An Interactive Guide to Getting the Best Care" was Published by John Wiley & Sons, Inc. in 2000. 00:34:00Powerful Patientnoreduce medical costs,communication with doctors,decrease medical errors,diagnosis,patient empowermentMaria Hester, M.D., is a physician in the Washington DC area who is committed to patient empowerment.  Through her corporation Savvier Health, she offers on-shttps://www.blogtalkradio.com/powerful-patient/2013/07/18/kidney-cancer-in-brazilHealthhttps://www.blogtalkradio.com/powerful-patient/2013/07/18/kidney-cancer-in-brazil/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/07/18/kidney-cancer-in-brazilThu, 18 Jul 2013 20:00:00 GMTKidney Cancer in Brazil Luciana Holtz is the Executive Director of the Urologic Institute in Sao Paolo, Brazil. She joins Joyce and Mike to talk about the work of her institute on kidney cancer and other urologic diseases in Brazil. 00:41:00Powerful Patientnokidney cancer,urology,Brazil,patient advocacy,empowermentLuciana Holtz is the Executive Director of the Urologic Institute in Sao Paolo, Brazil. She joins Joyce and Mike to talk about the work of her institute on kihttps://www.blogtalkradio.com/powerful-patient/2013/07/12/taking-care-of-harryHealthhttps://www.blogtalkradio.com/powerful-patient/2013/07/12/taking-care-of-harry/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/07/12/taking-care-of-harryFri, 12 Jul 2013 12:30:00 GMTTaking Care of HarryThe Caregiving experience is stressful for the patient as well as the caregiver. Whenever possible it is good to negotiate the changes in roles and responsibilities that occur. Both the patient and the caregiver need to work on evolving the relationship in ways that work for both parties and meet the medical goals. As you listen to the two interviews in this program, please think about Compliance Attitude Negotiation We speak with June, who at age 90 is the primary caregiver for her husband Harry, who has vascular dementia. They were married in 1941, and knew each other for ten years before that. Together they have gone from Level 1 care to Level 5 care as Harry’s needs have escalated, and with increasing care from their children and from home health aides, but their wish is for Harry to stay in his home. Their son, Jim, is also actively involved in his father’s care. We speak also with Jim about his own attitudes and experiences as a caregiver for his Dad. For more extensive notes, please see http://www.powerfulpatient.org/taking-care-of-harry/ This program was originally broadcast in 2008. In 2013 we spoke with June again, two years after Harry’s death, about her transition to the next chapter of her life. See Widow: Moving on to the Next Chapter of Your Life 01:00:00Powerful Patientnocaregiving,dementia,hospice,caring for the caregiver,empowermentThe Caregiving experience is stressful for the patient as well as the caregiver. Whenever possible it is good to negotiate the changes in roles and responsibilihttps://www.blogtalkradio.com/powerful-patient/2013/07/04/importance-of-dental-careHealthhttps://www.blogtalkradio.com/powerful-patient/2013/07/04/importance-of-dental-care/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/07/04/importance-of-dental-careThu, 04 Jul 2013 19:00:00 GMTImportance of Dental Care Joyce talks wth Dr. Rick Mars, a member of the Dental care Group in Aventura, Florida, about the importance of dental health to your overall health. Bacteria involved in periodontal disease have been linked to heart disease and pancreatic cancer.  In fact, people with periodontal disease have been shown to be at 33% higher risk for pancreatic cancer than the general population. Dr. Mars shares insights into ways to maintain good oral health with modest expense, as an important investment in your overall health.   00:30:00Powerful Patientnodental care,dentistry,oral health,immune system,mouth-body connectionJoyce talks wth Dr. Rick Mars, a member of the Dental care Group in Aventura, Florida, about the importance of dental health to your overall health. Bacteriahttps://www.blogtalkradio.com/powerful-patient/2013/06/27/empower-yourself--know-your-risks In this show we talk with Keith Richards, aka Just Sayin', a poet and Hip Hop artist from New York, about his brain tumor experience  Clips from two of his songs are included in the show.  We also speak with his mother, to hear her perspective on Keith's surgery and on the family health history. Kidney cancer is rising in the African American community.  An estimated 5% of that is due to genetic risk factors.  If you know you have one of the genetic risk factors for kidney cancer, your chances of surviving kidney cancer are in fact better than the general population.  That risk factor can be used as an early warning system, giving you a much greater chance of early detection and treatment. Nearly every day we are hearing about newly discovered genetic risk factors for cancer and other diseases. If a condition seems to run in your family, you may wish to put together a Family Health Tree,  This collection of information can help you see more clearly whether or how the condition may run in the family.  It can also be useful in preparing for a visit with a genetic counselor or geneticist, who can help you interpret this information.]]> In this show we talk with Keith Richards, aka Just Sayin', a poet and Hip Hop artist from New York, about his brain tumor experience  Clips from two of his songs are included in the show.  We also speak with his mother, to hear her perspective on Keith's surgery and on the family health history. Kidney cancer is rising in the African American community.  An estimated 5% of that is due to genetic risk factors.  If you know you have one of the genetic risk factors for kidney cancer, your chances of surviving kidney cancer are in fact better than the general population.  That risk factor can be used as an early warning system, giving you a much greater chance of early detection and treatment. Nearly every day we are hearing about newly discovered genetic risk factors for cancer and other diseases. If a condition seems to run in your family, you may wish to put together a Family Health Tree,  This collection of information can help you see more clearly whether or how the condition may run in the family.  It can also be useful in preparing for a visit with a genetic counselor or geneticist, who can help you interpret this information.]]>Healthhttps://www.blogtalkradio.com/powerful-patient/2013/06/27/empower-yourself--know-your-risks/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/06/27/empower-yourself--know-your-risksThu, 27 Jun 2013 19:00:00 GMTEmpower Yourself - Know Your Risks In this show we talk with Keith Richards, aka Just Sayin', a poet and Hip Hop artist from New York, about his brain tumor experience  Clips from two of his songs are included in the show.  We also speak with his mother, to hear her perspective on Keith's surgery and on the family health history. Kidney cancer is rising in the African American community.  An estimated 5% of that is due to genetic risk factors.  If you know you have one of the genetic risk factors for kidney cancer, your chances of surviving kidney cancer are in fact better than the general population.  That risk factor can be used as an early warning system, giving you a much greater chance of early detection and treatment. Nearly every day we are hearing about newly discovered genetic risk factors for cancer and other diseases. If a condition seems to run in your family, you may wish to put together a Family Health Tree,  This collection of information can help you see more clearly whether or how the condition may run in the family.  It can also be useful in preparing for a visit with a genetic counselor or geneticist, who can help you interpret this information.]]>An increasing number of genetic risk factors are appearing in the press.  As we learn more about the human genome, we are discovering the genes responsible for a number of diseases.  Some are damaged during our lifetimes; others may be inherited.  When a tiny flaw in one of these genes is inherited, this person has an increased risk of developing a problem.  Exactly how much the risk is elevated is a question for a genetics professional. <a href="http://www.powerfulpatient.org/?p=1236" title="Altheada's Story"></a> In this show we talk with Keith Richards, aka Just Sayin', a poet and Hip Hop artist from New York, about his brain tumor experience  Clips from two of his songs are included in the show.  We also speak with his mother, to hear her perspective on Keith's surgery and on the family health history. Kidney cancer is rising in the African American community.  An estimated 5% of that is due to genetic risk factors.  If you know you have one of the genetic risk factors for kidney cancer, your chances of surviving kidney cancer are in fact better than the general population.  That risk factor can be used as an early warning system, giving you a much greater chance of early detection and treatment. Nearly every day we are hearing about newly discovered genetic risk factors for cancer and other diseases. If a condition seems to run in your family, you may wish to put together a Family Health Tree,  This collection of information can help you see more clearly whether or how the condition may run in the family.  It can also be useful in preparing for a visit with a genetic counselor or geneticist, who can help you interpret this information.01:00:00Powerful Patientnogenetic risk,DNA testing,risk factors,nutrition,wellnessAn increasing number of genetic risk factors are appearing in the press.  As we learn more about the human genome, we are discovering the genes responsible forhttps://www.blogtalkradio.com/powerful-patient/2013/06/20/mike-and-joyce-advocating-for-youHealthhttps://www.blogtalkradio.com/powerful-patient/2013/06/20/mike-and-joyce-advocating-for-you/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/06/20/mike-and-joyce-advocating-for-youThu, 20 Jun 2013 19:00:00 GMTMike and Joyce Advocating for You Mike and Joyce have attended a number of conferences recently, advocating for you, and learning more. They take time to interview each other about their recent activities and share with you what they have been up to. Mike attended the American Urological Association meeting, where he met the good folks from Prune Belly syndrome. He also attended the meeting of the American Society for Clinical Oncology, learning about clinical trials and treatments for cancer. Joyce spoke at a symposium on Radiation Safety for CT's organized by the California state university hospitals.  Her talk will be made available following the broadcast. Mike and Joyce are both research advocates.  A research advocate learns to "speak the language" of the research teams and to provide input to the teams during the design of the clinical trials. If you are also interested in this important aspect of volunteerism, please contact  the Research Advocacy Network.  http://www.researchadvocacy.org 00:30:00Powerful Patientnooncology,urology,research advocate,cancer treatment,clinical trialsMike and Joyce have attended a number of conferences recently, advocating for you, and learning more. They take time to interview each other about their recenhttps://www.blogtalkradio.com/powerful-patient/2013/06/13/finding-sylvias-havenHealthhttps://www.blogtalkradio.com/powerful-patient/2013/06/13/finding-sylvias-haven/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/06/13/finding-sylvias-havenThu, 13 Jun 2013 19:00:00 GMTFinding Sylvia's Haven Mike and Joyce speak with Sylvia Anthony on June 13 about her autobiographical book, Till the End of Time. Life has not always been easy for Sylvia Anthony, but if you met her you would see a vibrant, remarkable woman who today, at age 83, stands as a pillar of inspiration that life does not end in retirement – but finding new meaning in life is what gives us life!  Sylvia overcame insurmountable adversity in order to help others and is living proof that life can be lived victoriously at any age. As founder and president of Sylvia’s Haven, a shelter for women and children near Boston, Sylvia has helped transform over 1077 lives in the past 26 years. While there is never enough money (she has loaned her own money to the shelter many times and has not received pay for the past four years), Sylvia wouldn’t change what she does for the world and calls it her “magnificent obsession!” Adding ‘author’ to her vast repertoire, Sylvia’s latest book, Till the End of Time (Xulon Press), is her compelling biography, seasoned with wisdom from a vast array of real-life experiences, that portrays a rich emotional and personal journey of transformation from an abused child to senior citizen. It is an extraordinary true story of abuse, love, sorrow and triumph – and is a story that will forever change your life. Sylvia Anthony talks about overcoming childhood beatings and an abusive marriage, and learning to cope with life's hardships to found a haven for abused women. 00:36:00Powerful Patientnoabuse,battered women,homeless women,homeless children,neglected childrenMike and Joyce speak with Sylvia Anthony on June 13 about her autobiographical book, Till the End of Time. Life has not always been easy for Sylvia Anthony, bhttps://www.blogtalkradio.com/powerful-patient/2013/06/06/what-is-prune-belly-syndromeHealthhttps://www.blogtalkradio.com/powerful-patient/2013/06/06/what-is-prune-belly-syndrome/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/06/06/what-is-prune-belly-syndromeThu, 06 Jun 2013 19:00:00 GMTWhat is Prune Belly Syndrome? Prune Belly Syndrome (PBS) is the common name for Eagle-Barrett syndrome, a group of birth defects which includes triad syndrome and urethral obstruction malformation sequence. This is a group of birth defects that can be serious without the proper medical treatment and includes a number of issues including bladder and urinary tract issues, undescended testicles, and poor development of the abdominal muscles. The lack of development in the abdominal muscles causes the skin in the area to wrinkle, like a prune—what we might see happen to our hands or feet after spending a prolonged time in water, but more pronounced. Mike and Joyce are joined by four members of families touched by Prune Belly Syndrome, who have banded together to form a non-profit dedicated to raising awareness, and sharing prenatal and lifetime issues in living with PBS.  They are working hard to educate doctors so that they will work constructively with families to prepare for the birth of an affected child, and manage the condition well.  Come meet Maryann Hall, Debi Apgar, Loretta Davis, and Derek Carter, and hear their stories. 00:33:00Powerful Patientnobirth defects,prune belly syndrome,Eagle-Barrett syndrome,urethral obstruction malformation,undescended testiclesPrune Belly Syndrome (PBS) is the common name for Eagle-Barrett syndrome, a group of birth defects which includes triad syndrome and urethral obstruction malfohttps://www.blogtalkradio.com/powerful-patient/2013/05/30/finding-peace-from-wartime-ptsdHealthhttps://www.blogtalkradio.com/powerful-patient/2013/05/30/finding-peace-from-wartime-ptsd/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/05/30/finding-peace-from-wartime-ptsdThu, 30 May 2013 19:00:00 GMTFinding Peace from Wartime PTSDWhen Christal Presley's father was eighteen, he was drafted to Vietnam. Like many men of that era who returned her childhood locked in his room, gravitating between the deepest depression and unspeakable rage, unable to participate in holidays or birthdays. At a very young age, Christal learned to walk on eggshells, doing anything and everything not to provoke him, but this dance caused her to  become a profoundly disturbed little girl. She acted out at school, engaged in self-mutilation, and couldn't make friends. At the age of eighteen, Christal left home and didn't look back. She barely spoke to her father for the next thirteen years. To any outsider, Christal appeared to be doing well: she earned a BA and a master's, got married, and traveled to India. But despite all these accomplishments, Christal still hadn't faced her biggest challenge—her relationship with her father. In 2009, something changed. Christal decided it was time to begin the healing process, and she extended an olive branch. She came up with what she called "The Thirty Day Project," a month's worth of conversations during which she would finally ask her father difficult questions about Vietnam. Thirty Days with My Father: Finding Peace from Wartime PTSD (HCI) is a gritty yet heartwarming story of those thirty days of a daughter and father reconnecting in a way that will inspire us all to seek the truth, even from life's most difficult relationships. This beautifully realized memoir shares how one woman and her father discovered profound lessons about their own strength and will to survive, shedding an inspiring light on generational PTSD. Just released, it is already number one on Amazon’s list of best-sellers.00:31:00Powerful PatientnoPTSD,Post-traumatic stress disorder,emotionally disturbed,survivor guilt,genetic scarsWhen Christal Presley's father was eighteen, he was drafted to Vietnam. Like many men of that era who returned her childhood locked in his room, gravitating bethttps://www.blogtalkradio.com/powerful-patient/2013/05/23/i-am-arnold-bradshawHealthhttps://www.blogtalkradio.com/powerful-patient/2013/05/23/i-am-arnold-bradshaw/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/05/23/i-am-arnold-bradshawThu, 23 May 2013 19:00:00 GMTI am Arnold Bradshaw Alzheimer’s Disease is the sixth leading cause of death in the U.S., according to the Centers for Disease Control and Prevention. As a larger percentage of our population enters their golden years, it is becoming essential to understand how to care for people suffering from Alzheimer's and other forms of dementia. Diane Bradshaw stood by her husband, Arnold Bradshaw, as he battled for five years with Alzheimer’s. During that time she kept a daily log of the care provided to him and the physical toll of the disease. Diane has turned that log into the new book, I Am Arnold. In her book she describes the good and the bad sides of nursing care facilities.  Join us and speak with Diane about the joys and frustrations of caring for a loved one with dementia. About our guest: Reverend Diane Bradshaw has a Master’s of Divinity from Colgate-Rochester Divinity School and has been a pastor in multiple churches for over 50 years. She was a Salvation Army Clergy Officer for over 20 years and has been a United Methodist minister for over 25 years. She is currently retired and living in Clay, NY. 00:34:00Powerful PatientnoAlzheimers,dementia,mental decline,paraplegia,caregiversAlzheimer’s Disease is the sixth leading cause of death in the U.S., according to the Centers for Disease Control and Prevention. As a larger percentage of ourhttps://www.blogtalkradio.com/powerful-patient/2013/05/16/how-to-cope-better-in-cancervilleHealthhttps://www.blogtalkradio.com/powerful-patient/2013/05/16/how-to-cope-better-in-cancerville/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/05/16/how-to-cope-better-in-cancervilleThu, 16 May 2013 19:00:00 GMTHow to Cope Better in CancervilleDr. William Penzer's journey through what he came to call Cancerville began in 2005 when his 31-year-old daughter was diagnosed with breast cancer. Despite being a caring and seasoned psychologist for almost forty years who helped others navigate the choppy waters of life, he was emotionally drowning in that very sea. He searched for a book to help support him during this difficult time but found none. As he learned how to adapt and cope in Cancerville, he promised himself he would write a helpful book someday to support family and friends facing that same situation. This seasoned psychologist eventually discovered how to cope better when dealing with cancer. Penzer concluded that cancer is not only a dreaded diagnosis, but a place with its own culture, customs, language, confusions. Penzer's two books "How to Cope Better When You Have Cancer" and "How To Cope Better When Someone You Love Has Cancer" will be your guide on this demanding journey. These  books address not only the patient but those who care for a loved one suffering from the disease.  Together, both books provide a practical, powerful, positive, and proactive way for people to face their Cancerville journey head-on and "Dam Strong!" William Penzer. Ph.D.  Received his Ph.D. from New York University and has been a psychologist for 40+ years. He is the author of "Getting Back Up From an emotional Down," and You Have Choices: Overcoming Anxiety, Panic and Phobia."  Penzer is currently the Director of the Humanistic Center for Counseling Services in Ft. Lauderdale, Boca Raton and Coral Springs FL.00:32:00Powerful Patientnocancer,caregiving,coping,mental health,caregiversDr. William Penzer's journey through what he came to call Cancerville began in 2005 when his 31-year-old daughter was diagnosed with breast cancer. Despite beinhttps://www.blogtalkradio.com/powerful-patient/2013/05/09/theres-an-app-for-it--reducing-stds-among-teensHealthhttps://www.blogtalkradio.com/powerful-patient/2013/05/09/theres-an-app-for-it--reducing-stds-among-teens/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/05/09/theres-an-app-for-it--reducing-stds-among-teensThu, 09 May 2013 19:00:00 GMTThere's an App for it - reducing STDs among teens According to the CDC, one sexually active teenager in four already has a sexually-transmitted disease.  They are growing at an epidemic rate – 10 million youths contracted an STD last year alone. In the United States, young people (15-24) make up just over one-fourth of the sexually active population, but account for half of the 10 million cases of sexually-transmitted disease (STDs) each year, according to the Center for Disease Control (CDC).  46% of high school students have had sexual intercourse and are at risk for HIV and STDs.  While there is a national effort to educate youth about HIV before they begin engaging in sexual activities, about one in three high school students did not use a condom during their last sexual intercourse. Many people blame mobile technology for promoting sexual activity.  There are some creative new efforts to use mobile technology to raise awareness.  In the last few weeks, the Bloomberg Administration in New York City launched a controversial mobile app intended to reduce teen pregnancy called “Teens in NYC Protection+” and a judge ordered the morning after pill, Plan B, be available for females of all ages.  Both are aimed at reducing pregnancy for teens and reduce STDs. Qpid.me (www.QpidMe.com) has a new mobile technology that is doing its part to reduce the spread of STDs.  “Technology is repeatedly blamed for young people having sex.  We are turning that around and using technology to empower youth to make better sexual health decisions both on and offline,” said Ramin Bastani, founder and CEO of Qpid.me - a free, simple way to access and share verified STD results in a completely private, secure and unique way. 00:30:00Powerful PatientnoSTDs,sexually transmitted diseases,syphillis,gonorrhea,HIVAccording to the CDC, one sexually active teenager in four already has a sexually-transmitted disease.  They are growing at an epidemic rate – 10 million youthhttps://www.blogtalkradio.com/powerful-patient/2013/05/02/cancer-care-in-germanyHealthhttps://www.blogtalkradio.com/powerful-patient/2013/05/02/cancer-care-in-germany/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/05/02/cancer-care-in-germanyThu, 02 May 2013 19:00:00 GMTCancer care in Germany Mike and Joyce speak with Berit Eberhardt, Division head for Kidney Cancer at the House of Life (Das Lebenshaus) in Germany. Das Lebenshaus is a non-profit organization providing information and support for those affected by rare solid tumors: gastro-intestinal stromal tumors (GIST), Sarcoma, and Kidney Cancer.  Berit studied economics and worked as a project manager in a global information technology company.  Her life changed when her boyfriend was diagnosed with kidney cancer.  As a caregiver, Berit got in touch with Das Lebenshaus and read and learned a lot about the disease and the various possible treatments.  Unfortunately, her boyfriend died just one year after his diagnosis, at the age of 39. Half a year after his death she began a patient support group in Berlin.  A few months later she became the manager of Kidney Cancer at Das Lebenshaus.  She has broadened her commitment to Kidney Cancer and is an active participant in global events such as the International Kidney Cancer Coalition and the International events sponsored by the Kidney Cancer Association. 00:37:00Powerful Patientnokidney cancer,patient support,Germany,cancer,caregiversMike and Joyce speak with Berit Eberhardt, Division head for Kidney Cancer at the House of Life (Das Lebenshaus) in Germany. Das Lebenshaus is a non-profit orhttps://www.blogtalkradio.com/powerful-patient/2013/04/25/juliet-ibrahim-fighting-kidney-cancer-in-africaHealthhttps://www.blogtalkradio.com/powerful-patient/2013/04/25/juliet-ibrahim-fighting-kidney-cancer-in-africa/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/04/25/juliet-ibrahim-fighting-kidney-cancer-in-africaThu, 25 Apr 2013 19:00:00 GMTJuliet Ibrahim fighting kidney cancer in Africa Juliet Ibrahim, a successful actress and model in Ghana, West Africa, wanted to dedicate herself to a worthy cause.  She chose kidney cancer primarily because of two of her aunts who suffer from kidney cancer.  These aunts are dear to her, and she wanted to be able to help them and others like them by creating a voice that will be bigger than any of her movies. In Ghana and most of the African nations there are not many good options for people with kidney cancer.  She is determined to change that. The Juliet Ibrahim Foundation (JIF) is a nonprofit, nonpartisan organization focused on creating awareness about kdieny cancer and providing cost effective treatment for individuals suffering from kidney related diseases.  Kidney cancer is preventable and curable, and JIF aims to help those in need of treatment to have access to service in Africa.  JIF offers education, treatment and other social support. The goal is to create a world without kidney cancer.  Their primary near-term objective is to help low income individuals suffering from kidney diseases who cannot afford treatment. One way in which they are raising awarness is through her video, http://youtu.be/MrP8p4OmtLE   00:32:00Powerful Patientnokidney cancer,dialysis,healthcare,Ghana,AfricaJuliet Ibrahim, a successful actress and model in Ghana, West Africa, wanted to dedicate herself to a worthy cause.  She chose kidney cancer primarily becausehttps://www.blogtalkradio.com/powerful-patient/2013/04/18/what-is-kidney-oncHealthhttps://www.blogtalkradio.com/powerful-patient/2013/04/18/what-is-kidney-onc/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/04/18/what-is-kidney-oncThu, 18 Apr 2013 19:00:00 GMTWhat is KIDNEY-ONC? Robin Martinez, one of the listowners (administrators) for KIDNEY-ONC, CHROMOPHOBE-RCC, and PAPILLARY-RCC, three of over 100 mailing lists provided by the Association of Cancer Online Resources (ACOR).  Subscribers to our mailing lists communicate via email sent simultaneously to all members.  Patients, survivors, caregivers, and professionals discuss current treatments and how to choose among them, side effects, clinical trials, where to find experienced doctors, problems of living with a long-term disease, emotional support, and much more. In 2011 KIDNEY-ONC won grand prize for an outstanding example of use of mailing list technology from L-Soft, the company which first developed this technology 27years ago.  Our memers exemplify the e-patient movement in which patients become engaged, empowered, and well-equipped partners in their own health care. Robin's late husband was diagnosed with renal cell carcinoma in 1988 and died from it in 1998.  During her own search for information in 1997, she became one of the administrators of the KIDNEY-ONC mailing list and later its offshoots for papillary and chromophobe RCC. She has also served as a consumer reviewer for kidney cancer grant applications to the Department of Defense.  She is affiliated with Action to Cure Kidney Cancer and the International Kidney Cancer Coalition.  She lives in Denver, Colorado, with her adult son. Robin will share information about ACOR's latest initiative, SmartPatient   00:38:00Powerful Patientnokidney cancer,papillary kidney cancer,chromophobe kidney cancer,KIDNEY-ONC,patient empowermentRobin Martinez, one of the listowners (administrators) for KIDNEY-ONC, CHROMOPHOBE-RCC, and PAPILLARY-RCC, three of over 100 mailing lists provided by the Assohttps://www.blogtalkradio.com/powerful-patient/2013/04/04/causes-and-care-for-mesotheliomaHealthhttps://www.blogtalkradio.com/powerful-patient/2013/04/04/causes-and-care-for-mesothelioma/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/04/04/causes-and-care-for-mesotheliomaThu, 04 Apr 2013 19:00:00 GMTCauses and care for Mesothelioma Mesothelioma is a particularly virulent form of cancer of the lungs or abdomen, usually caused by exposure to asbestos.  Once considered a workingman’s disease, mesothelioma is increasingly being found in younger persons. 3,000 Americans are diagnosed with mesothelioma every year, regardless of race, socio-economic background or age. Mary Hesdorffer, a Nurse Practitioner, is the executive director of The Mesothelioma Foundation. She is a tireless advocate for mesothelioma patients and their families, who are irreversibly impacted by the diagnosis. So far there is only one drug with any effectiveness against it, and that prolongs life by a median of only three months. Mesothelioma has acquired a poor image due to the stigma of its association with law firms that have high-profile accident and personal injury practices. The Meso Foundation is mindful that putting patients first, and mobilizing resources to fund independent, peer-reviewed research projects, is the only hope for finding truly effective life-prolonging treatment for mesothelioma patients, and eventually finding a cure for this aggressive and neglected cancer. Ms. Hesdorffer and the Foundation maintain that in order to truly find life-prolonging treatment, the disease needs to be taken separately from the asbestos litigation industry and recast in the public mind as a serious killer deserving of the full weight of America’s medical and public health resources. 00:30:00Powerful Patientnomesothelioma,lung cancer,abdominal cancer,peritoneal cancer,pericardial mesotheliomaMesothelioma is a particularly virulent form of cancer of the lungs or abdomen, usually caused by exposure to asbestos.  Once considered a workingman’s diseasehttps://www.blogtalkradio.com/powerful-patient/2013/03/28/reducing-hospital-acquired-infectionsHealthhttps://www.blogtalkradio.com/powerful-patient/2013/03/28/reducing-hospital-acquired-infections/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/03/28/reducing-hospital-acquired-infectionsThu, 28 Mar 2013 19:00:00 GMTReducing Hospital-Acquired InfectionsMike and Joyce speak with Linda Riley, MEd, RN, CIC, Manager, Infection Prevention, Cooley Dickinson Hospital, and with Heather McLarney, DebMed Systems, makers of the GMS hand hygiene monitoring system. Hospital-acquired infections (HAIs) are the fourth leading cause of death in the U.S. According to the Centers for Disease Control and Prevention, HAIs are responsible for 99,000 deaths per year and result in $35.7 to $45 billion annually in healthcare costs. Cooley-Dickinson Hospital in Northampton, Massachusetts, is a 140-bed acute care hospital, providing patient-centered health care services both at its main campus in Northampton, Mass., and at satellite facilities in Amherst, Easthampton, Florence, Hadley, South Deerfield and Worthington, other locations also in western Massachusetts. At Cooley Dickinson, 300 affiliated physicians and over 1,600 employees work collaboratively to provide the highest quality of care. This collaboration is at the core of Cooley Dickinson’s goal to consistently exceed the expectations of patients and families and to become a model for how care is delivered at our nation’s community hospitals. Nationally recognized organizations — the Institute for Healthcare Improvement and the Betsy Lehman Center for Patient Safety and Medical Error Reduction — have designated Cooley Dickinson as a top-performing hospital.  Having received the prestigious Healthgrades’ top five-percent patient safety award for four years in a row (2009 – 2012), Cooley Dickinson has been a recognized leader in patient safety and the use of innovative technologies.00:32:00Powerful PatientnoHAIs,hospital-acquired infections,patient safety,healthcare,hospitalizationMike and Joyce speak with Linda Riley, MEd, RN, CIC, Manager, Infection Prevention, Cooley Dickinson Hospital, and with Heather McLarney, DebMed Systems, makershttps://www.blogtalkradio.com/powerful-patient/2013/03/21/coping-with-time-crunched-physiciansHealthhttps://www.blogtalkradio.com/powerful-patient/2013/03/21/coping-with-time-crunched-physicians/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/03/21/coping-with-time-crunched-physiciansThu, 21 Mar 2013 19:00:00 GMTCoping with Time-Crunched Physicians It’s not your imagination – you’re getting less time with your doctor. Primary care physicians are in short supply in the United States, which means increased pressures and heavier workloads for those in practice, says Dr. Paul Griner, (www.drpaulgriner.com), author of “The Power of Patient Stories: Learning Moments in Medicine.”   “Many physicians say their favorite part of being a doctor is the relationships they form with patients, but those are harder to cultivate now because physicians are so squeezed for time,” Griner says. More than 80 percent of physicians said patient relationships were the “most satisfying” part of their job, according to a survey of more than 13,000 doctors last year by The Physicians Foundation. But nearly 40 percent said they were seeing 11 to 20 patients a day, and nearly 27 percent had a daily load of 21 to 30.  On top of that, they spent an average 22 percent of their day on paperwork that had nothing to do with patient care. “A good doctor-patient relationship is essential to achieving the best possible care, but the reality is, most doctors have less and less time to spend with each patient,” Griner says. “So it’s important for patients to take some responsibility for that relationship, too.” By preparing for your visit, you can ensure you make the best use of your time together, he says. Dr. Griner speaks with Joyce and Mike about how patients can prepare and optimize the time with their physician. 00:30:00Powerful Patientnodoctor visit,communication,prepare for doctor,internist,advocating for yourselfIt’s not your imagination – you’re getting less time with your doctor. Primary care physicians are in short supply in the United States, which means increasedhttps://www.blogtalkradio.com/powerful-patient/2013/03/14/hints-for-minimizing-depressionHealthhttps://www.blogtalkradio.com/powerful-patient/2013/03/14/hints-for-minimizing-depression/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/03/14/hints-for-minimizing-depressionThu, 14 Mar 2013 19:00:00 GMTHints for Minimizing Depression It’s no wonder nearly one in 10 Americans suffers from depression. “Top risk factors include being unable to work or unemployed; having no health insurance; suffering from obesity,” notes psychologist Gregory L. Jantz, citing a Centers for Disease Control study. “Unfortunately, those topics have dominated headlines for the past five years. What’s worse, by 2020, the World Health Organization estimates depression will be the second most debilitating disease worldwide.” The author of “Overcoming Anxiety, Worry and Fear,” (www.aplaceofhope.com) says these negative emotions along with sustained, excessive stress can lead to depression, which now overshadows other  problems for which patients seek help at his clinic. “Depression can be rooted in a number of problems, and those need to be addressed – simply taking a pill is not usually effective treatment. Anger, fear and guilt can all be underlying causes, even when the person isn’t aware he’s experiencing those feelings.” A holistic treatment approach, which may or may not include medication, helps people overcome a bout of the debilitating illness, and learn techniques to manage it themselves, he says.    “Depression is painful and as debilitating as any other disease,” he says. “Take steps to de-stress your life and to work on emotional balance before it gets worse.” If you’re concerned you or a loved one may be depressed, visit www.aplaceofhope.com and click the “Are You?” tab for a self-evaluation. 01:01:00Powerful Patientnodepression,anxiety,worry,fear,mental healthIt’s no wonder nearly one in 10 Americans suffers from depression. “Top risk factors include being unable to work or unemployed; having no health insurance; shttps://www.blogtalkradio.com/powerful-patient/2013/03/07/getting-to-the-bottom-of-gastrointestinal-complaintsHealthhttps://www.blogtalkradio.com/powerful-patient/2013/03/07/getting-to-the-bottom-of-gastrointestinal-complaints/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/03/07/getting-to-the-bottom-of-gastrointestinal-complaintsThu, 07 Mar 2013 20:00:00 GMTGetting to the Bottom of Gastrointestinal Complaints On this week’s show Joyce and Mike welcome Ricky Safer (CEO) and Joanne Grieme (Board Chair) from PSC Partners Seeking a Cure, a non-profit dedicated to finding a cure for Primary Sclerosing Cholangitis.  PSC is a chronic liver disease where the bile ducts become impaired, eventually leading to deterioration of the liver.  It is commonly associated with inflammatory bowel disease and ulcerative colitis. We will discuss the difficulties patients often encounter in getting an accurate diagnosis of this condition.  Until it is properly diagnosed, it is not possible to set out a reasonable treatment plan. People with PSC often need a liver transplant.  One young man has had three liver transplants and is doing well.  We talk about liver transplants. As with so many rare diseases, the patient becomes responsible for navigating the medical system, arbitrating among the advice of many specialists, and keeping track of appointments and records.  Ricky and Joanne share what they have learned about dealing with the complexity of gastrointestinal complaints. http://pscpartners.org 00:32:00Powerful PatientnoPSC,primary sclerosing cholangitis,liver transplant,inflammatory bowel disease,colitisOn this week’s show Joyce and Mike welcome Ricky Safer (CEO) and Joanne Grieme (Board Chair) from PSC Partners Seeking a Cure, a non-profit dedicated to findinhttps://www.blogtalkradio.com/powerful-patient/2013/02/28/cancer-of-the-aopendixHealthhttps://www.blogtalkradio.com/powerful-patient/2013/02/28/cancer-of-the-aopendix/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/02/28/cancer-of-the-aopendixThu, 28 Feb 2013 20:00:00 GMTCancer of the AppendixCarolyn Langlie-Lesnik speaks with Mike and Joyce about cancer of the appendix, a rare form of cancer of the gastrointestinal tract. The appendix is a small hollow tube attached to the large colon (the large colon is also called large bowel or large intestine). The appendix is approximately 4 inches long and shaped like a worm. The appendix serves no known purpose, although it is thought to possibly play a role in the immune system. Very rarely, the appendix may become cancerous. Since the appendix is attached to the colon, appendix cancer is considered a type of colorectal cancer. Colorectal cancers are also part of a larger group of cancers of gastrointestinal tract, or GI cancers. Cancer of the appendix may cause appendicitis or cause the appendix to rupture. Sometimes this is the first symptom of appendix cancer. A ruptured appendix may cause a very serious condition called peritonitis, which is an infection of the lining of the abdomen and pelvis. A cancerous tumor of the appendix may also "seed" the abdomen with cancer cells. This may cause more cancerous tumors to develop in the abdomen before it is discovered. See Peritoneal Surface Malignancies and Peritoneal Carcinomatosis. Many times there are no symptoms of appendix cancer until it has progressed and is advanced. Abdominal discomfort and bloating of the abdomen can be signs of advanced appendiceal cancer For more information on this rare cancer and its sub-types, please see http://www.appendix-cancer.com00:30:00Powerful Patientnoappendix,ruptured appendix,colorectal cancer,appendix cancer,appendicitisCarolyn Langlie-Lesnik speaks with Mike and Joyce about cancer of the appendix, a rare form of cancer of the gastrointestinal tract. The appendix is a small hohttps://www.blogtalkradio.com/powerful-patient/2013/02/21/getting-the-right-diagnosisHealthhttps://www.blogtalkradio.com/powerful-patient/2013/02/21/getting-the-right-diagnosis/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/02/21/getting-the-right-diagnosisThu, 21 Feb 2013 20:00:00 GMTGetting the Right Diagnosis Despite our “latest and greatest” technologies, 15% of all medical cases in developed countries are misdiagnosed, according to the American Journal of Medicine.  Literally millions of patients worldwide are being treated for the wrong conditions every year.  The Mayo Clinic Proceedings found that 26% of cases were misdiagnosed while, according to the Journal of Clinical Oncology, up to a startling total of 44% of some types of cancer are misdiagnosed. These statistics should be getting much more attention. Misdiagnosis means needless suffering for patients and their families and, in many cases, even lost lives.  Secondarily, it also means that nearly one-third of the $2.7 trillion spent each year on health care in the U.S. are considered to be wasted dollars. Evan Falchuk, vice chairman of BestDoctors.com, talks with Joyce and Mike about the challenges facing patients in getting the right diagnosis, and how patients can press for better answers.  BestDoctors is working for quality, more customized care for patients.  A global organization, founded in 1989 by Harvard-affiliated physicians, served 30 million members in every region of the world. www.bestdoctors.com twitter.com/bestdoctors facebook.com/bestdoctors 00:31:00Powerful Patientnodiagnosis,misdiagnosis,cancer,rare diseases,patient-centered healthcareDespite our “latest and greatest” technologies, 15% of all medical cases in developed countries are misdiagnosed, according to the American Journal of Medicinehttps://www.blogtalkradio.com/powerful-patient/2013/02/14/mental-health-evaluation-detection-and-treatmentHealthhttps://www.blogtalkradio.com/powerful-patient/2013/02/14/mental-health-evaluation-detection-and-treatment/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/02/14/mental-health-evaluation-detection-and-treatmentThu, 14 Feb 2013 20:00:00 GMTMental Health: Evaluation, Detection, and Treatment Dr. Jay Lombard speaks with Joyce about the need for better ways to evaluate a person’s mental state and stability, and to determine what drugs or nutritional elements might be helpful for this particular individual.  Good nutrition is essential to brain health.  Individuals may have subtle deficiencies of essential minerals.  There are thousands of drugs – which one is most likely to benefit this person? Dr. Lombard, a board certified neurologist, has published several books on the role of nutrition and the brain and has lectured extensively on this topic. The chief scientific officer of Genomind, Dr. Jay Lombard, says psychiatry needs objective biomarkers for diagnosis, and that solutions are on the way thanks to genetics, proteomics and epigenics. 1 minute overview: http://www.youtube.com/watch?v=Nb-HrOQRnLg 6 minute introduction to his philosophy: http://www.youtube.com/watch?v=HOy74jiyZuQ More detailed presentation done for the NAMI. http://www.slideshare.net/genomind/genomind-nami-presentation-by-dr-jay-lombard-8647643  Dr. Lombard has had numerous television and radio appearances including appearances on Larry King, Dr. Oz, CBS News, Fox News, The Early Morning Show and others. He was also invited to present at TEDMED 2012. He is currently a professor of Neurology at Touro College of Osteopathic Medicine. 00:25:00Powerful Patientnomental health,depression,psychosis,genetics,mental crisisDr. Jay Lombard speaks with Joyce about the need for better ways to evaluate a person’s mental state and stability, and to determine what drugs or nutritionalhttps://www.blogtalkradio.com/powerful-patient/2013/02/07/clinical-trials-for-allHealthhttps://www.blogtalkradio.com/powerful-patient/2013/02/07/clinical-trials-for-all/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/02/07/clinical-trials-for-allThu, 07 Feb 2013 20:00:00 GMTClinical Trials for All In order to have new drugs to help with cancers and rare diseases, we have to first try them out in Clinical Trials. The design process of clinical trials is somewhat cumbersome and is often inherently controversial. We want to make sure that the trial gives us the information on safety and effectiveness that we will want to know once it goes on the market. At the same time we don’t want to over-complicate the clinical trial process and take too long to approve drugs that are doing well. Billy Foster is in a clinical trial and has had a good response to the drug he is taking. Through his involvement with programs through the Kidney Cancer Association (KCA) and the American Association for Cancer Research (AACR) he has become aware of built-in disparities in the design of most clinical tri00:32:00Powerful Patientnoclinical trials,diversity,African Americans,kidney cancer,targeted therapyIn order to have new drugs to help with cancers and rare diseases, we have to first try them out in Clinical Trials. The design process of clinical trials is shttps://www.blogtalkradio.com/powerful-patient/2013/01/31/the-great-pain-jack--or-how-pain-can-hijack-the-brainCaregivinghttps://www.blogtalkradio.com/powerful-patient/2013/01/31/the-great-pain-jack--or-how-pain-can-hijack-the-brain/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/01/31/the-great-pain-jack--or-how-pain-can-hijack-the-brainThu, 31 Jan 2013 20:00:00 GMTThe Great Pain Jack - or, how pain can hijack the brain Dr. John F. Petraglia, an anesthesiologyst and specialist in pain management, speaks with Mike and Joyce about his experience of more than 25 years of treating chronic and acute pain conditions. His book, The Great Pain Jack, explains how pain essentially hijacks the brain.  It is a self-help mapping tool to assist people and their doctors achieve an accurate diagnosis and create an appropriate treatment plan to deal with chronic or acute pain. "It is my desire that by providing hope and inspiration, as well as diagnostic and therapeutic options for those in chronic pain, that an awareness campaign will generate enough momentum that no one will fall victim to 'the great pain Jack!"  Dr. Petraglia says. Dr. Petraglia is involved in weekly live and internet-based support group education programs known as "Checkity Check before You Wreckity Wreck" to help those who suffer in pain better understand the proper usage of medications. 00:31:00Powerful Patientnopain,medication,chronic pain,anesthesiology,pain managementDr. John F. Petraglia, an anesthesiologyst and specialist in pain management, speaks with Mike and Joyce about his experience of more than 25 years of treatinghttps://www.blogtalkradio.com/powerful-patient/2013/01/24/taking-care-of-the-communityCaregivinghttps://www.blogtalkradio.com/powerful-patient/2013/01/24/taking-care-of-the-community/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/01/24/taking-care-of-the-communityThu, 24 Jan 2013 20:00:00 GMTTaking Care of the Community Bonnie Voegeli, Psy.D., is a school psychologist in Newtown, Connecticut, helping her community recover from the shocking events of January. Rabbi William Hamilton of Congregation Kehillath Israel in Brookline, Massachusetts, is also Chaplain of the Massachusetts State Police.  He was one of the people called to Logan Airport in Boston to work with the families waiting in vain for their loved oned to come home on 9/11, September 11, 2001.  These are some of the front-line resources for individuals, families and indeed communities, dealing with illness, death, and wider tragedies.  Fires, earthquakes, car crashes, and terrorist events all have a widespreade effect. Bonnie and Rabbi Hamilton speak with Joyce and Mike about what they have found most helpful in taking care of people in times of crisis. 00:57:00Powerful Patientnocrisis intervention,death,grief,shock,healingBonnie Voegeli, Psy.D., is a school psychologist in Newtown, Connecticut, helping her community recover from the shocking events of January. Rabbi William Hamhttps://www.blogtalkradio.com/powerful-patient/2013/01/17/unbreak-your-healthHealthhttps://www.blogtalkradio.com/powerful-patient/2013/01/17/unbreak-your-health/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/01/17/unbreak-your-healthThu, 17 Jan 2013 20:00:00 GMTUnbreak Your HealthOur guest today speaks to Joyce about a very timely subject  After a disappointing trip to the Mayo Clinic, author Alan E. Smith admits, "I suddenly became very open-minded about complementary and alternative medicine (CAM)." Like many people he turned to new options after he'd run out of treatments in mainstream medicine.Fortunately he found some therapies that have been very beneficial and have restored much of his health After his own success he wanted to share the hope that CAM can offer by writing his first book, UnBreak Your Health. Alan Smith’s talk with Joyce was originally broadcast on the Powerful Patient August 24, 2011. 00:36:00Powerful PatientnoUnbreak your health,alternative,Alan E. Smith,complimentary medicine,healthOur guest today speaks to Joyce about a very timely subject  After a disappointing trip to the Mayo Clinic, author Alan E. Smith admits, "I suddenly became veryhttps://www.blogtalkradio.com/powerful-patient/2013/01/10/living-with-bhd--birt-hogg-dub-syndromeHealthhttps://www.blogtalkradio.com/powerful-patient/2013/01/10/living-with-bhd--birt-hogg-dub-syndrome/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/01/10/living-with-bhd--birt-hogg-dub-syndromeThu, 10 Jan 2013 20:00:00 GMTLiving with BHD - Birt-Hogg-Dubé syndrome Jean S. from Oregon joins Mike and Joyce for a conversation about Birt-Hogg-Dubé syndrome, one of several recently identified genetic causes of kidney cancer.  Jean s a volunteer with the VHL Family Alliance, providing support for others with BHD.  VHLFA provides patient support for people with a number of genetic tumor conditions, including VHL, HLRCC, and BHD. Jean shares her story of diagnosis -- how she found out the name of the condition that was plaguing her -- and how she has learned to manage her health.  Please join us for this conversation.  Jean will be taking calls during the program, or you can contact her later at http://vhl.inspire.com, in the conversation about BHD. 00:32:00Powerful PatientnoBHD,Birt-Hogg-Dube,kidney cancer,genetic cancer,patient advocacyJean S. from Oregon joins Mike and Joyce for a conversation about Birt-Hogg-Dubé syndrome, one of several recently identified genetic causes of kidney cancer.https://www.blogtalkradio.com/powerful-patient/2013/01/03/treating-distress-facilitates-healingHealthhttps://www.blogtalkradio.com/powerful-patient/2013/01/03/treating-distress-facilitates-healing/#commentshttp://www.blogtalkradio.com/powerful-patient/2013/01/03/treating-distress-facilitates-healingThu, 03 Jan 2013 20:00:00 GMTTreating Distress Facilitates Healing In 2007 the Institute of Medicine (IOM; 2007) issued a report Cancer Care for theWhole Patient: Meeting Psychosocial Health Needs. This report focused on ways to increase the quality of care provided to cancer patients.  The challenge they issued was to devise methods to screen patients to determine their level of distress and to provide intervention as needed. In 2011 the Commission on Cancer issued guidelines for screening cancer patients for a new aspect of their condition: Distress.  Since the issuance of this Screening method there has been considerable discussion among oncology social workers (OSW's) of the processes of implementation of distress screening in cancer centers, screening policies and protocols, screening tool choice, and oncology social worker professional identity. Professor Mary Ann Burg of the University of Central Florida analyzed the postings of OSW's to a professional listserv and published her results.  Joyce and Mike speak with Dr. Burg about her findings. The article: Mary Ann Burg PhD, MSW, LCSW, Gail Adorno PhD, MSW, LCSW & Jorge Hidalgo BA (2012): An Analysis of Social Work Oncology Network Listserv Postings on the Commission of Cancer's Distress Screening Guidelines, Journal of Psychosocial Oncology, 30:6, 636-651 To link to this article: http://dx.doi.org/10.1080/07347332.2012.721484   00:32:00Powerful Patientnocancer patients,distress screening,managing stress,oncology social work,speed healingIn 2007 the Institute of Medicine (IOM; 2007) issued a report Cancer Care for theWhole Patient: Meeting Psychosocial Health Needs. This report focused on wayshttps://www.blogtalkradio.com/powerful-patient/2012/12/27/managing-our-fearHealthhttps://www.blogtalkradio.com/powerful-patient/2012/12/27/managing-our-fear/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/12/27/managing-our-fearThu, 27 Dec 2012 20:00:00 GMTManaging our FearWe all have fears and insecurities as well as strengths and resilience. The trick is to keep them in balance. We speak with Deb Hogan, of Walk Out of Worry Ministries. Locked in fear for many years, she has grown through her fear to learn to manage her health. In addition, through her very beautiful music and her faith, she has reached out to others to help them also Walk Out of Worry. From the Mailbag, we received a question from Simon, who has recently been diagnosed with a complex medical condition, involving tumors of the brain, eye, and kidney. “This is all very confusing… I keep wondering whether I can expect to live to a normal age in relatively good health, or should I maybe be planning my life differently to deal with a lower age expectancy???” We asked Dr. Gary L. Wood of Wood & Associates to comment on this question. He and Deb outline some strategies for acknowledging and reducing fear, and dealing realistically with a problem through knowledge, logic, and skills you can develop yourself. Permanent link with additional information: http://powerfulpatient.org/?p=683 00:58:00Powerful Patientnoworry,anxiety,chronic disease,VHL,von Hippel-LindauWe all have fears and insecurities as well as strengths and resilience. The trick is to keep them in balance. We speak with Deb Hogan, of Walk Out of Worry Minhttps://www.blogtalkradio.com/powerful-patient/2012/12/20/ptsd-a-national-health-crisisHealthhttps://www.blogtalkradio.com/powerful-patient/2012/12/20/ptsd-a-national-health-crisis/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/12/20/ptsd-a-national-health-crisisThu, 20 Dec 2012 20:00:00 GMTPTSD: A National Health CrisisJoyce and Mike speak with Michelle Bellon about her new novel, “The Complexity of a Soldier,” in which she depicts a soldier going through post-traumatic stress disorder (PTSD). Successfully integrating a soldier back into civilian life requires providing him or her with trauma evaluation services such as thorough psychiatric assessments and examination of post-traumatic stress symptoms, which include anxiety, nightmares, change in eating pattern or sleeping pattern, fear of leaving the house, inability to carry out job responsibilities, fear of public places, and startling at loud noises, to name just a few. However, statistics show that mental health screenings of returning troops has little to no effect on their actually receiving services. Here are a few startling statistics: • Lifetime occurrence of PTSD in combat veterans is 10 to 30 percent. • In the past year alone, the number of diagnosed cases in the military has increased by 50 percent over the previous year. • Studies show that one in every five troops returning from Iraq and Afghanistan has PTSD. • It is estimated that there are currently 300,000 American veterans of the Iraq war struggling with PTSD. • Troops that served two, three and even four tours of duty were dramatically more at risk due to increased stress levels. What we have learned about Post-Traumatic Stress Disorder has raised our consciousness about these concerns also among people who have experienced repeated incidents of medical illnesses as well. People with on-going medical issues, cancer recurrences, or other needs for repeated surgery are also at higher risk of PTSD.  00:32:00Powerful PatientnoPTSD,post-traumatic stress disorder,psychology,military,chronic diseaseJoyce and Mike speak with Michelle Bellon about her new novel, “The Complexity of a Soldier,” in which she depicts a soldier going through post-traumatic stresshttps://www.blogtalkradio.com/powerful-patient/2012/12/13/tobacco-nicotine--stop-smoking-and-reduce-harmHealthhttps://www.blogtalkradio.com/powerful-patient/2012/12/13/tobacco-nicotine--stop-smoking-and-reduce-harm/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/12/13/tobacco-nicotine--stop-smoking-and-reduce-harmThu, 13 Dec 2012 20:00:00 GMTTobacco, Nicotine -- stop smoking and reduce harm Dr. Gilbert Ross speaks with Mike and Joyce about stopping smoking, getting that harmful smoke and tar out of your life, and reducing the harm that they they inject into our bodies and our atmosphere. Dr. Ross is Medical Director of the American Council on Science and Health in New York. Tobacco is an addiction which is not easy to quit. Nicotine alternatives take away the tar but continue the nicotine.  We will talk about a number of strategies for stopping smoking and reducing the harm from tobacco smoke and tar..   00:31:00Powerful Patientnotobacco,nicotine,smoking cessation,second-hand smoke,children smokingDr. Gilbert Ross speaks with Mike and Joyce about stopping smoking, getting that harmful smoke and tar out of your life, and reducing the harm that they they ihttps://www.blogtalkradio.com/powerful-patient/2012/12/06/sustaining-nutrition-when-you-dont-feel-like-eatingNutritionhttps://www.blogtalkradio.com/powerful-patient/2012/12/06/sustaining-nutrition-when-you-dont-feel-like-eating/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/12/06/sustaining-nutrition-when-you-dont-feel-like-eatingThu, 06 Dec 2012 20:00:00 GMTSustaining Nutrition when you don't feel like eatingIn celebration of National Food Day, Susanne Robertson from Community Services talks with Mike and Joyce about their unique service to prepare meals for people who need some additional nutritional support.  Here is some information from their website, http://www.servings.org Community Servings believes that food and nutrition impact the overall health and well-being of an individual.  This is even more important when an individual is battling a critical illness.  Our meals are designed specifically for our clients and their families.  We strive to provide menus that are:Culturally appropriateEvocative of memories and feelings of comfortNutritiousDesigned to provide approximately 67% of daily needs.  Provide adequate calories and protein to support health during critical illnessDesigned in accordance with the Guidelines for Healthy Americans with regards to intake of total fat, saturated fat, cholesterol, carbohydrates, and sodium. If needed, our registered dietitian will develop an individualized care plan with the client either over the phone or in person. 00:30:00Powerful Patientnonutrition,chronic illness,caregiving,national food day,foodIn celebration of National Food Day, Susanne Robertson from Community Services talks with Mike and Joyce about their unique service to prepare meals for peoplehttps://www.blogtalkradio.com/powerful-patient/2012/11/29/laughing-yoga-laughing-mattersCaregivinghttps://www.blogtalkradio.com/powerful-patient/2012/11/29/laughing-yoga-laughing-matters/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/11/29/laughing-yoga-laughing-mattersThu, 29 Nov 2012 20:00:00 GMTLaughing Yoga, Laughing Matters For years we have heard that Laughter is the Best Medicine.  A doctor in India founded a movement of Laughter Yoga which has spread to more than 60 countries.  Got nothing to laugh about?  You can get the same benefits from faking it. “Fake it until you make it.” Sandra Boris-Berkowitz, M.Ed., LRC, is a Laughter Yoga Leadercertified by the Dr. Kataria School of Laughter Yoga. She is also a teacher and a licensed rehabilitation counselor. Over 25 years ago, Dr. Norman Cousins in his book Anatomy of an Illness described how watching Marx Brother movies helped him recover from a life-threatening tissue disease. "Is it possible," he wondered, "that love, hope, faith, laughter, and confidence and the will to live have therapeutic value?" Cousins made it a point to enjoy a hearty belly laugh several times a day. A few minutes of laughter gave him an hour or more of pain-free sleep. Scientific studies have proved that hearty laughter has a powerful and immediate strengthening effect on our immune system. Laughter quickly increases immunoglobulin levels that help fight infection and increases the number of Natural Killer Cells (NK cells) in the blood. Natural killer cells play a key role in cancer prevention. Dr Berk took blood samples from subjects watching humorous videos and found that natural killer cells increased significantly with laughter. The NK cells in blood samples from laughing subjects quickly killed cancer cells he introduced into the samples. There is medical evidence that laughter releases natural hormones (endorphins) which help you feel good.  Laughter reduces stress, increases energy, boosts the immune system, provides natural pain relief, and improves brain functioning. One minute of laughter is equivalent to 6-10 minutes on a treadmill.  Fifteen minutes of laughter a day can lower the risk of cardiovascular disease. 01:01:00Powerful Patientnolaughing,yoga,caregiving,dementia,stress managementFor years we have heard that Laughter is the Best Medicine.  A doctor in India founded a movement of Laughter Yoga which has spread to more than 60 countries.https://www.blogtalkradio.com/powerful-patient/2012/11/22/the-making-of-i-once-was-blindHealthhttps://www.blogtalkradio.com/powerful-patient/2012/11/22/the-making-of-i-once-was-blind/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/11/22/the-making-of-i-once-was-blindThu, 22 Nov 2012 20:00:00 GMTThe Making of "I Once Was Blind"In August at the Providence, Rhode Island, International Film Festival, Joyce was privileged to view the first ever showing of a new documentary film "I Once Was Blind" by Charlene and Jeffrey Chapman. They filmed and documented Maureen's life for seven years, then boiled it down to 75 minutes. Many thanks to the Chapmans for creating this film, and to Maureen for letting us all into her life. Recently Joyce had a chance to meet with Charlene and Jeff to talk about their experience in documenting Maureen's life with von Hippel-Lindau (VHL), her kidney transplant, and the course of her life in general. http://riff.festivalgenius.com/2012/films/ioncewasblind_charlenechapman_riff2012 The documentary I Once Was Blind witnesses the transformation of a young woman as she battles for her life and independence over a period of almost ten years. With humor and faith she wrestles blindness, kidney failure, and the discovery of her new husband's addiction. Refusing to succumb to the crushing circumstances of her life she leaves family and friends, travels 1700 miles for mobility training, and becomes Residential Manager of the Colorado Center for the Blind. Interestingly, Joyce interviewed Maureen and her brother Ed four years ago, following the kidney transplant which is documented in this film as well, and we ran an article about them in the VHL Newsletter. It was great to meet them in person at the showing in Providence!  Ed is the YouTube comedian Ed Bassmaster. As background,  you can listen to that interview at http://www.powerfulpatient.org/the-perfect-gift-kidney-transplant/00:32:00Powerful Patientnoblindness,kidney transplant,kidney failure,von Hippel-Lindau,VHLIn August at the Providence, Rhode Island, International Film Festival, Joyce was privileged to view the first ever showing of a new documentary film "I Once Wahttps://www.blogtalkradio.com/powerful-patient/2012/11/15/widow-moving-to-the-next-chapter-in-your-lifeCaregivinghttps://www.blogtalkradio.com/powerful-patient/2012/11/15/widow-moving-to-the-next-chapter-in-your-life/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/11/15/widow-moving-to-the-next-chapter-in-your-lifeThu, 15 Nov 2012 20:00:00 GMTWidow: Moving to the Next Chapter in your Life People who lose a spouse often feel like they have lost a limb.  People who have been a caregiver for many years go through a jarring transition when their spouse dies -- they essentially lose their job, and sometimes with it their compass, their direction in life. We are warned that following the death of a spouse or loved one, the surviving spouse is at high risk for the next two years of having a major illness or accident. Joyce talks with her mother, June, who cared for her husband through 68 years of marriage, ending in four years of dementia.  At the age of 92 she moved from caregiver to living alone for the first time in her life.  Judy Powell, a professional social worker, joins the conversation.  Judy has been June's friend, confidante, and helper through this time. 00:28:00Powerful Patientnowidowhood,transition,dementia,caregiving,survivingPeople who lose a spouse often feel like they have lost a limb.  People who have been a caregiver for many years go through a jarring transition when their spohttps://www.blogtalkradio.com/powerful-patient/2012/11/08/conquering-kidney-cancerHealthhttps://www.blogtalkradio.com/powerful-patient/2012/11/08/conquering-kidney-cancer/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/11/08/conquering-kidney-cancerThu, 08 Nov 2012 20:00:00 GMTConquering Kidney Cancer Joyce and Mike speak with Dr. David F. McDermott, Director of the Kidney Cancer Program at Dana Farber/Harvard Cancer Center in Boston, Massachusetts, and Program Chairman of the 11th Annual Kidney Cancer Symposium sponsored by the Kidney Cancer Association which took place in Chicago the first week of October 2012. Dr. McDermott helps us understand about the role of biopsies in treating kidney cancer.  When it it beneficial? what information does it supply to the treating physician?  How important is it? what are the risks?  Can imaging replace a biopsy at least in some cases? He also helps us understand the drugs currently available for kidney cancer, and the future of drug therapies for this condition.  Should a person with kidney cancer consider a clinical trial?  We also discuss the importane of getting advice from one of the major centers that is more frequently involved in treating kidney cancer.  Second opinions are available even without traveling.  It is important to get input from an expert on the plan for your treatment before any surgery and before treatment actually begins.  To create some of the new immune therapies, for example, the lab will need a fresh piece of your tumor.  If they tumor has already been removed and preserved, this option might not be available to you. Joyce and Mike are preparing a report from the Symposium in patient-approachable language that will be available on the Kidney Cancer Association website and on the Powerful Patient website, http://powerfulpatient.org 00:30:00Powerful Patientnokidney cancer,targeted therapy,immune therapy,biopsy,combination therapyJoyce and Mike speak with Dr. David F. McDermott, Director of the Kidney Cancer Program at Dana Farber/Harvard Cancer Center in Boston, Massachusetts, and Proghttps://www.blogtalkradio.com/powerful-patient/2012/11/01/reinventing-the-healHealthhttps://www.blogtalkradio.com/powerful-patient/2012/11/01/reinventing-the-heal/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/11/01/reinventing-the-healThu, 01 Nov 2012 19:00:00 GMTReinventing the Heal Dr. Hansen talks with Joyce and Mike about his ideas for reinventing the American healthcare system from the inside out -- getting the physicians to make changes that will improve patient outcomes. "There is no question that we have the most marvelous and sophisticated healthcare system in the world, but our patient outcomes leave much to be desired when compared with those of other industrialized countries.  Our rising healthcare expenditures, the asymmetry in the delivery of our health care system, and the calcified ideology of both the political right and left are sources of concern." Ultimately the solution is one that only physicians can offer.  He argues for better solutions, better outcomes for patients.  And he encourages patients to ask for it, and work with the medical community to make sure they get the service they need. Learn another way you can be a powerful patient!   00:31:00Powerful Patientnohealthcare,politics,change,health reform,patient outcomesDr. Hansen talks with Joyce and Mike about his ideas for reinventing the American healthcare system from the inside out -- getting the physicians to make changhttps://www.blogtalkradio.com/powerful-patient/2012/10/25/skin-care-for-people-living-with-cancerHealthhttps://www.blogtalkradio.com/powerful-patient/2012/10/25/skin-care-for-people-living-with-cancer/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/10/25/skin-care-for-people-living-with-cancerThu, 25 Oct 2012 19:00:00 GMTSkin Care for People Living with Cancer Mike and Joyce talk with Dr. Mario Lacouture, a board-certified dermatologist with special interest in dermatologic conditions that result from cancer treatments. His clinical career has been focused on the recognition and management of side effects affecting the skin, hair, and nails of cancer patients and survivors. These effects can occur as a consequence of chemotherapy, radiation therapy, or therapeutic transplants. To ensure that dermatologic side effects do not affect quality of life and the consistent administration of anticancer therapies, he founded the SERIES Clinic (SERIES is an acronym for Skin and Eye Reactions to Inhibitors of EGFR and kinases).  The Clinic is an interdisciplinary effort comprising patient care, education, and research. It provides pre-treatment counseling and preventive efforts in order to minimize the development of side effects, as well as rapid attention to those patients who develop them. Close communication with treating oncologists ensures that interventions against side effects do not affect the effectiveness of cancer treatments. The ultimate goal is to ensure the best dermatology-related quality of life and benefit from anticancer treatments. In addition to his medical textbook on the subject, Dr. Lacouture has recently released a book for patients and caregivers, “The Skin Care Guide for People Living with Cancer,” which is available at online bookstores. 00:31:00Powerful Patientnocancer,cancer treatment,kinase inhibitors,skin care,targeted therapyMike and Joyce talk with Dr. Mario Lacouture, a board-certified dermatologist with special interest in dermatologic conditions that result from cancer treatmenhttps://www.blogtalkradio.com/powerful-patient/2012/10/18/healing-psychosis-and-depressionCaregivinghttps://www.blogtalkradio.com/powerful-patient/2012/10/18/healing-psychosis-and-depression/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/10/18/healing-psychosis-and-depressionThu, 18 Oct 2012 19:00:00 GMTHealing Psychosis and Depression Paris Williams spent years as a champion hang glider pilot.  He then experienced a mental crisis that could have been labeled psychosis, but he avoided getting diagnosed or “helped” by psychiatry, and instead worked through his experiences on his own.  This caused him to get interested in helping others. He became a Ph.D. psychologist and researcher interested in detailed exploration of the experiences of people who underwent psychosis and recovered.    His book, “Rethinking Psychosis,” emerges out of his personal experiences those of others.  He asserts that under the right conditions, psychosis can be expected to most commonly result in a positive outcome, an outcome that is something better than the state that existed before the psychosis.  This assertion flies in the face of most of what our culture thinks it “knows” about psychosis, but the arguments for it are very well documented.  This is not just some romantic notion that psychosis is always a good thing – Williams is clear that it is hazardous under the best of conditions, and likely to lead to major ongoing life difficulties when the focus is just on attempts to suppress the process, as usually happens in developed countries today.  But what is critical to note is that these poor outcomes are typically a result of a poor handling of the experience, and not of the nature of the experience itself. Dr. Williams discusses how the ability to regulate one’s approach to such dilemmas is lost in psychosis, usually in response to a number of stressful experiences, but also how the loss of one’s prior approach has the potential to lead to the emergence of new and healthier ways of being organized, which might later benefit not just the individual but also the wider society.  What is needed is a safe way to facilitate the process of reintegration and recovery. 00:30:00Powerful Patientnomental health,depresson,psychosis,madness,healingParis Williams spent years as a champion hang glider pilot.  He then experienced a mental crisis that could have been labeled psychosis, but he avoided gettinghttps://www.blogtalkradio.com/powerful-patient/2012/10/11/eat-drink-and-be-marriedHealthhttps://www.blogtalkradio.com/powerful-patient/2012/10/11/eat-drink-and-be-married/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/10/11/eat-drink-and-be-marriedThu, 11 Oct 2012 19:00:00 GMTEat, Drink, and be Married Joyce talks with Rebecca Bloom about her book, Eat, Drink, and be Married. When college friends Kate, Nina and Zoë take holiday from their busy schedules on opposite coasts to join their former roommate, Hannah, for her wedding in Lake Tahoe, they not only bring suitcases packed with what-not-to-wear bridesmaid dresses, but baggage of a more emotional kind. Supported by a variety of eclectic characters determined to wreck havoc on their carefully organized lives, each woman is forced to come to terms with her past before she walks down the aisle. Zoë must learn how to reveal a vulnerability beneath her bravado before she can finally open her heart. Kate needs to reclaim her identity before she can regain her strut. Nina must heal her own inner child so she can provide for another. Hannah needs to release a ghost in order to recover her spirit. A bottle of booze, a host of laughs, a hankie or two worth of tears, and seventy-two hours among those who know and love them the most is the perfect recipe for four women to Eat, Drink, and Be Married. 00:30:00Powerful Patientnocommunication,self-help,emotional baggage,friends,negotiationJoyce talks with Rebecca Bloom about her book, Eat, Drink, and be Married. When college friends Kate, Nina and Zoë take holiday from their busy schedules on ohttps://www.blogtalkradio.com/powerful-patient/2012/10/04/make-a-difference-in-your-health-care--speak-upHealthhttps://www.blogtalkradio.com/powerful-patient/2012/10/04/make-a-difference-in-your-health-care--speak-up/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/10/04/make-a-difference-in-your-health-care--speak-upThu, 04 Oct 2012 19:00:00 GMTMake a Difference in Your Health Care - Speak up! Dr. Wen talks with Joyce and Mike about the importance of clear lines of communication with your doctor. My mother is my role model and my inspiration for what I do every day. She was diagnosed with breast cancer when she was in her forties, and fought it courageously for seven years until she passed away in 2010. At one point she complained of stomach pain, which her doctor said was caused by her medication, and prescribed stool softeners.  She wondered why if the pain was caused by the medication, why was he telling her to take more?  Either he did not explain completely, or she did not understand.  “So why didn’t you ask the doctor about it?” I would ask. Asking her doctor questions just wasn’t something she thought she could do, and no amount of cajoling on my part could get her to change her mind. I attributed her reticence to her having come of age in China. However, she was also a schoolteacher who had no trouble standing up for her students.  So why couldn’t she advocate for herself when she needed it the most? I encourage all of you to make a difference in your healthcare. Speak up the moment you have a question, the moment you don’t understand something the doctor said. Don’t let more time—and more opportunity for misunderstanding—pass by. The work that you do will revolutionize your interactions with your doctor, and potentially change how your doctor interacts with future patients as well. Leana Wen is an emergency physician who blogs at When Doctors Don’t Listen. She is the co-author of When Doctors Don’t Listen: How to Prevent Misdiagnosis and Unnecessary Tests. 00:31:00Powerful Patientnocommunication,advocacy,cancer,misdiagnosis,misunderstandingDr. Wen talks with Joyce and Mike about the importance of clear lines of communication with your doctor. My mother is my role model and my inspiration for whahttps://www.blogtalkradio.com/powerful-patient/2012/09/20/my-greatest-challenges-my-greatest-giftsHealthhttps://www.blogtalkradio.com/powerful-patient/2012/09/20/my-greatest-challenges-my-greatest-gifts/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/09/20/my-greatest-challenges-my-greatest-giftsThu, 20 Sep 2012 19:00:00 GMTMy Greatest Challenges, My Greatest Gifts Editing the audio.  It should be available after 6 pm EDT 9/20/2012. Those of us with VHL understand that receiving a diagnosis of a rare genetic syndrome changes our perspective on life. We live under a shadow of uncertainty, striving to live with hope while cancer and tumors are present and possibly growing. We view the future with trepidation, striving to move forward with faith despite having witnessed the ravages of this disease on our loved ones, or concerns about the suffering of our posterity. This rare disorder presents many unique challenges and each one of us must navigate our way through this disease.   Several years ago I was nearing my late forties and was increasingly conscious of that “average life expectancy” that was drawing closer, I contemplated what was of greatest worth to pass on to my children. I soon realized that having VHL gave me a unique vantage point on life that unless I shared, they would never appreciate or understand.   As the project continued, I soon recognized that I had found my way through life and through this disease by turning to God. The most powerful lessons were the ones that impacted my relationship with Him. These were also the ones that refined my character and defined my life. Gifts of the Trellis was intended to be a private record for my posterity. As an explanation for the title I wrote, “I considered my life as a whole built on a trellis of tragedy. Yet it was through this framework of despair that I had come to know God. He had revealed Himself to me, covering a bitter lattice with sweet and beautiful mercies. My challenges had been my greatest teachers. They were blessings in my life—Gifts of the Trellis.”     00:33:00Powerful Patientnovon Hippel-Lindau,genetic condition,genetics,cancer,familial diseaseEditing the audio.  It should be available after 6 pm EDT 9/20/2012. Those of us with VHL understand that receiving a diagnosis of a rare genetic syndrome chahttps://www.blogtalkradio.com/powerful-patient/2012/09/13/prostate-health-monthHealthhttps://www.blogtalkradio.com/powerful-patient/2012/09/13/prostate-health-month/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/09/13/prostate-health-monthThu, 13 Sep 2012 19:00:00 GMTCancer Progress Report The American Association for Cancer Research released the AACR Cancer Progress Report 2012 at a National Press Club event on Wednesday, Sept. 12. The report, which was published simultaneously in Clinical Cancer Research, a journal of the AACR, celebrates the many ways that scientists have made research count for cancer patients and highlights the great need for continued support for cancer research. Joyce and Mike talk with Shaundra Hall, who attended yesterday's press conference, about the implications for patients and how we can help the researchers to make even better progress. Shaundra Hall is employed as the Executive Assistant to the President and CEO for Cancer Treatment Centers of America at Western Regional Medical Center, and is also a volunteer with the National Cervical Cancer Coalition/International HPV Cancer Coalition (NCCC) and the American Social Health Association (ASHA). As the Regional Director of the Southwest U.S. for NCCC/ASHA, which includes Arizona, New Mexico, Texas and Oklahoma, she supports, educates and promotes cervical cancer prevention & HPV cancer prevention and awareness. She travels the country learning about the latest scientific developments regarding HPV related diseases and in turn, educates local communities through speeches, informal community forums and corporate wellness presentations. 00:31:00Powerful Patientnocancer,progress,war on cancer,cancer research,patients helping researchersThe American Association for Cancer Research released the AACR Cancer Progress Report 2012 at a National Press Club event on Wednesday, Sept. 12. The report, whttps://www.blogtalkradio.com/powerful-patient/2012/09/06/exploring-your-genesHealthhttps://www.blogtalkradio.com/powerful-patient/2012/09/06/exploring-your-genes/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/09/06/exploring-your-genesThu, 06 Sep 2012 19:00:00 GMTExploring Your Genes Max McCoy speaks with Joyce about his recent personal adventure, exploring the depths of his own genome.  It's an ongoing adventure worthy of some of his fictional heroes -- unexpected twists and turns, sometimes more information than you know what to do with, and often more questions than answers are unearthed. Max McCoy is an award-winning author and journalist. He's the author of four original Indiana Jones adventures for Lucasfilm, the critically acclaimed thriller The Moon Pool, and the Hellfire western noir trilogy. Damnation Road, the last book in the trilogy, won the 2011 Spur Award from the Western Writers of America for Best Novel. Hellfire Canyon, the first book, also won the Spur and was named a Kansas Notable Book for 2008. Max wrote the novelization for Steven Spielberg’s epic miniseries, Into the West. His books have been published by Random House, Simon and Schuster, and Kensington. He teaches journalism at Emporia State University 00:29:00Powerful Patientnogenes,genome,genomics,23andme,risk factorsMax McCoy speaks with Joyce about his recent personal adventure, exploring the depths of his own genome.  It's an ongoing adventure worthy of some of his fictihttps://www.blogtalkradio.com/powerful-patient/2012/08/30/taking-care-of-yourselfCaregivinghttps://www.blogtalkradio.com/powerful-patient/2012/08/30/taking-care-of-yourself/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/08/30/taking-care-of-yourselfThu, 30 Aug 2012 19:00:00 GMTTaking Care of Yourself Joni Aldrich, internet radio host on the Cancer Support Network, focuses on issues of support for patients and caregivers going through the cancer experience. Joni Aldrich was raised in a home where the words “I can’t” were never used in a sentence, so she learned from a young age the tools and tenacity required to persevere throughout life’s challenges. In 2004, Joni found herself putting all of her personal and professional skills to use in a way that she had never imagined: learning everything she could about cancer and caregiving after her 43-year-old husband Gordon was diagnosed with a rare type of cancer. After two years of crisis in the caregiving school of hard knocks, Joni was devastated when Gordon lost his battle. Several years later, she quit a job that she loved to use the knowledge and insight she gained through her experiences to help others navigate their own life-changing journeys. She has published six books designed to help readers survive cancer, caregiving, brain illness, and grief. Add to that twenty years of training and public speaking, and her ability to inspire, empower, and motivate are limitless. She hosts a show called Caregiving S.O.S. (Sanity or Superwoman)…. Joni talks with Mike Lawing and Joyce Graff about her experiences, her work, and her advice to people going through this situation.   00:29:00Powerful Patientnocancer,caregiving,survivorship,healthcare,womens healthJoni Aldrich, internet radio host on the Cancer Support Network, focuses on issues of support for patients and caregivers going through the cancer experience.https://www.blogtalkradio.com/powerful-patient/2012/08/23/medical-ethicists-confront-cancer-themselvesCaregivinghttps://www.blogtalkradio.com/powerful-patient/2012/08/23/medical-ethicists-confront-cancer-themselves/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/08/23/medical-ethicists-confront-cancer-themselvesThu, 23 Aug 2012 19:00:00 GMTMedical Ethicists Confront Cancer Themselves Dr. Rebecca Dresser, editor of and contributor to a new book on medical ethics and cancer, was diagnosed with head and neck cancer six years ago. While she has written and taught extensively about the legal and ethical dimensions of a variety of medical topics, personally enduring intense radiation and chemotherapy treatments spurred her interest in the ethics of cancer and cancer care medicine. For perspective, she reached out to five colleagues, also medical ethicists, who had either had cancer themselves or had a spouse diagnosed with the disease. One of them had experienced both.    “Since my diagnosis, I had been immersed in a crash course in real-world medical ethics,” writes Rebecca Dresser, editor of Malignant: Medical Ethicists Confront Cancer, published by Oxford University Press. She and her colleagues discuss their personal experiences with cancer or caring for loved ones with the disease, with lessons for doctors and nurses, patients, and caregivers. Despite her own personal battle, Rebecca Dresser doesn’t view herself as a cancer “survivor.” “Many people who have faced the disease are very courageous, but, in terms of defeating cancer, really, we were just lucky,” says Dresser, JD, the Daniel Noyes Kirby Professor of Law and professor of ethics at the School of Medicine at Washington University in St. Louis. Dr. Dresser speaks with Joyce Graff and Mike Lawing about what she learned about herself and others through this experience, and how her understanding of the ethics of cancer may have changed. 00:34:00Powerful Patientnomedical ethics,cancer,caregiving,surviving cancer,cancer patientDr. Rebecca Dresser, editor of and contributor to a new book on medical ethics and cancer, was diagnosed with head and neck cancer six years ago. While she hashttps://www.blogtalkradio.com/powerful-patient/2012/08/16/meet-mike-lawing-cancer-navigator-health-advocateSurvivor Program. He is a member of the North Carolina Oncology Navigator Association, the North Carolina Comprehensive Cancer Program, a facilitator for Survivin’; a cancer and caregiver support group at the Rutherford Regional Cancer Outreach Center, and is involved with several other cancer support groups in North Carolina. ]]>Survivor Program. He is a member of the North Carolina Oncology Navigator Association, the North Carolina Comprehensive Cancer Program, a facilitator for Survivin’; a cancer and caregiver support group at the Rutherford Regional Cancer Outreach Center, and is involved with several other cancer support groups in North Carolina. ]]>Healthhttps://www.blogtalkradio.com/powerful-patient/2012/08/16/meet-mike-lawing-cancer-navigator-health-advocate/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/08/16/meet-mike-lawing-cancer-navigator-health-advocateThu, 16 Aug 2012 19:00:00 GMTMeet Mike Lawing, Cancer Navigator, Health AdvocateSurvivor Program. He is a member of the North Carolina Oncology Navigator Association, the North Carolina Comprehensive Cancer Program, a facilitator for Survivin’; a cancer and caregiver support group at the Rutherford Regional Cancer Outreach Center, and is involved with several other cancer support groups in North Carolina. ]]> Joyce talks with Mike Lawing, a colleague and friend through patient advocacy work.  Mike is a delightful guy with a rich Southern drawl. Mike Lawing was diagnosed with kidney cancer 15 years ago.  He has spent those years taking good care of his own health, and has also become very involved with cancer survivorship and advocacy for patients and their caregivers in a number of ways. He frequently challenges the newly diagnosed and their families that he encounters with a statement by Dr. Norman Cousins; “Don’t deny the diagnosis; try to defy the outcome.” Mike serves as the Moderator of the Kidney Cancer Forum hosted by the Kidney Cancer Association (www.kidneycancer.org) and is a Patient Advocate Liaison at their annual International Kidney Cancer Symposiums in Chicago. He is the Coordinator of the 2011 Survivor Project.  The resulting book We Have Kidney Cancer: Survivors Stories is a companion publication to the KCA’s multi-language reference book We Have Kidney Cancer. Both publications are available in a print edition and a Kindle edition from Amazon.com and as a PDF download at the KCA’s website.   Lawing is a member of the Patient Advocacy Advisory Board of Novartis Oncology; serves as a Consumer Reviewer for the Department of Defense Peer-Reviewed Cancer Research Program for colon, kidney and genetic cancers, is an affiliate member of the American Association for Cancer Research and is an alumnus of their Scientist<>Survivor Program. He is a member of the North Carolina Oncology Navigator Association, the North Carolina Comprehensive Cancer Program, a facilitator for Survivin’; a cancer and caregiver support group at the Rutherford Regional Cancer Outreach Center, and is involved with several other cancer support groups in North Carolina. 00:33:00Powerful Patientnokidney cancer,renal disease,cancer survivorship,caregivers,advocacyJoyce talks with Mike Lawing, a colleague and friend through patient advocacy work.  Mike is a delightful guy with a rich Southern drawl. Mike Lawing was diaghttps://www.blogtalkradio.com/powerful-patient/2012/08/09/the-patient-survival-guideHealthhttps://www.blogtalkradio.com/powerful-patient/2012/08/09/the-patient-survival-guide/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/08/09/the-patient-survival-guideThu, 09 Aug 2012 19:00:00 GMTThe Patient Survival GuideDr. Maryanne McGuckin is a trusted expert in infection prevention and the author of The Patient Survival Guide; a guide we should all have on hand before we, or a loved one, head to the hospital. She is highly respected in the medical field for her tireless efforts in preventing healthcare-acquired infections. She presents her 8 Simple Solutions to Prevent Hospital and Healthcare-Associated Infections.  She will also discuss specific, practical, and outside-the-box strategies for anticipating and preventing errors in hospital care. Dr. Maryanne McGuckin is an international expert on infection prevention, having served on the faculty at the University of Pennsylvania Medical School, the infection control and epidemiology team at the University of Pennsylvania Health System, task forces for the Centers for Disease Control and Prevention and the World Health Organization, and as Senior Scholar/Fellow with the Jefferson School of Population Health at Thomas Jefferson University, Philadelphia, PA     00:32:00Powerful Patientnohospital,infection,preventing infection,hospital errors,medical errorsDr. Maryanne McGuckin is a trusted expert in infection prevention and the author of The Patient Survival Guide; a guide we should all have on hand before we, orhttps://www.blogtalkradio.com/powerful-patient/2012/08/02/quiet-all-that-negative-self-talk-and-get-on-with-itCaregivinghttps://www.blogtalkradio.com/powerful-patient/2012/08/02/quiet-all-that-negative-self-talk-and-get-on-with-it/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/08/02/quiet-all-that-negative-self-talk-and-get-on-with-itThu, 02 Aug 2012 19:00:00 GMTQuiet all that negative self-talk and get on with it Joyce talks with Greg Winick about his new book, "I Told My Mind To Shut The F*ck Up!": ...and then I saw what was possible."  The book chronicles his own journey from panic to clear thinking and survival. About his book, Greg writes: "Perhaps your mind supplies you with haunting thoughts. Anxious, maddening, or distracting thoughts. Perhaps it is telling you that something can't be done... Or maybe what you really need is to tell your mind to shut the f*ck up. This is my story, and I am telling it so others can learn something useful. I had a big problem: My wife and son were simultaneously diagnosed with multiple tumors. The diagnosis sent me into a state of panic. Until then, my life had equipped me with the mental tools to think clearly, make good decisions, and help my family survive. I just had to quiet my mind so I could use them. "I had come a long way--from a troubled youth to a successful entrepreneur and teacher. Along the way, I acquired a New Age perspective for defeating the demons of my mind and navigating my life and family towards a positive outcome. Thanks to it, I was able to empower myself to achieve financial independence, support my wife through two decades of serious surgical procedures, and help my son fight to survive one of the most complicated neurological surgeries in medical history. You can learn how to overcome great obstacles in order to get what you want--no matter what your mind says." Greg Winick is an English teacher with a Masters degree in Education. He is also a professional magician and inspirational speaker. In his free time he trains for and runs marathons, plays in No-Limit Texas Hold-Em tournaments, and follows politics obsessively. He lives in Northern New Jersey with his wife Cathy, his 17 year old son Jesse and an overweight dachshund named Lou. 00:32:00Powerful Patientnoself-talk,managing panic,anxiety,healthcare,caregivingJoyce talks with Greg Winick about his new book, "I Told My Mind To Shut The F*ck Up!": ...and then I saw what was possible."  The book chronicles his own jourhttps://www.blogtalkradio.com/powerful-patient/2012/07/26/ordinary-miracles-a-journey-through-infertility-to-joyHealthhttps://www.blogtalkradio.com/powerful-patient/2012/07/26/ordinary-miracles-a-journey-through-infertility-to-joy/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/07/26/ordinary-miracles-a-journey-through-infertility-to-joyThu, 26 Jul 2012 19:00:00 GMTOrdinary Miracles: a journey through infertility to joy Krissi Marie McVicker always dreamed of being a mother. Her conviction so strong that she willingly endured six rounds of in-vitro fertilization (IVF) before her dream finally came true. In her inspiring new memoir Ordinary Miracles, McVicker chronicles her dramatic journey through primary and secondary IVF, which started at the age of 29, and her tireless determination to become a mother despite all odds. The book reveals McVicker’s infertility experiences firsthand- offering other struggling mothers a unique perspective on IVF. From the bittersweet news that her twin sister conceived in her first month of trying and her mother’s sudden passing to the joy of hearing her daughter’s heartbeat, McVicker takes readers along on her journey to parenthood. Within the pages of her memoir, McVicker eagerly squashes some of the assumptions and myths regarding infertility. “IVF isn’t only for women in their 40’s,” says McVicker. “Women of all ages experience infertility for various reasons.” With touching honesty and candid storytelling, McVicker weaves together a heartfelt story of hope, perseverance, and of course, miracles. Joyce talks with Krissi about her experience, and about her book, “Ordinary Miracles” “This book is a true testament to the perseverance of women trying to become mothers, and their fight to live the lives they’ve always dreamed of,” says McVicker. Krissi Marie McVicker is a schoolteacher with a master of fine arts degree in writing for children. Desperate to become parents, her husband and her endured six IVF cycles over the course of five years. An avid blogger, McVicker is dedicated to aiding others in their fertility journey and shares insight and tips on her blog, Stress Free Fertility. 00:31:00Powerful Patientnoinfertility,in-vitro fertilization IVF,gift,sperm donor,pre-implantation genetic diagnosis PGDKrissi Marie McVicker always dreamed of being a mother. Her conviction so strong that she willingly endured six rounds of in-vitro fertilization (IVF) before hhttps://www.blogtalkradio.com/powerful-patient/2012/07/19/discovering-the-real-dr-quinn-medicine-womanHealthhttps://www.blogtalkradio.com/powerful-patient/2012/07/19/discovering-the-real-dr-quinn-medicine-woman/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/07/19/discovering-the-real-dr-quinn-medicine-womanThu, 19 Jul 2012 19:00:00 GMTDiscovering the Real Dr. Quinn, Medicine WomanSilenced by the prejudice of history makers past, not much is known about the life of Dr. Rebecca Lee Crumpler, the first African American, female doctor in the U.S.  However, Eula Youngblood gives this heroine of the equal rights movement a voice in her novel, Tumult and Dr. Frances Lowe.  Youngblood exposes the challenges Dr. Lee Crumpler faced after graduating from the New England Female Medical College in 1864. “This woman was truly extraordinary, a mover and shaker that paved the way for all African Americans, women, and other minorities to move past the barriers of society. I felt I had to share her story of success in overcoming the prejudices that once plagued this country,” says Youngblood. In addition to her accomplishments, Dr. Lee Crumpler’s publication, Book of Medical Discourses is one of the very first medical publications by an African American, comprised of the notes she kept during her years of medical practice. The book marks her achievements as a physician and medical writer in a time when very few African Americans or women were able to gain admittance to medical college, let alone publish.  “I’m determined to show that despite race and gender, people have equal potential for success when armed with the right tools and motivation. Discrimination is merely based on fear and jealously,” says Youngblood. 00:31:00Powerful Patientnowomen in medicine,discrimination,African American women,pioneers of medicine,medicineSilenced by the prejudice of history makers past, not much is known about the life of Dr. Rebecca Lee Crumpler, the first African American, female doctor in thehttps://www.blogtalkradio.com/powerful-patient/2012/07/12/healthcare-improvement-through-kaizenHealthhttps://www.blogtalkradio.com/powerful-patient/2012/07/12/healthcare-improvement-through-kaizen/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/07/12/healthcare-improvement-through-kaizenThu, 12 Jul 2012 19:00:00 GMTHealthcare improvement through Kaizen Healthcare organizations are under incredible pressure to improve quality and reduce costs. Kaizen, as a methodology, gives us a way to engage front-line staff and leaders so they are more fulfilled through the improvement of their work, providing the best possible patient care. “Kaizen,” the Japanese word for "improvement", or "change for the better" refers to philosophy or practices that focus upon continuous improvement of processes in manufacturing, engineering, and business management.  It has been applied in a broad range of industries. By improving standardized activities and processes, kaizen aims to eliminate waste.  Kaizen was first implemented in several Japanese businesses after the Second World War, influenced in part by American business and quality management teachers who visited the country. It has since spread throughout the world and is now being implemented in many other venues besides just business and productivity. In their new book, Mark Graban and Joseph Swartz propose the implementation of Kaizen in Healthcare.  Through the empowerment of employees to reduce waste and improve safety, they feel that leaders in healthcare can effectively and efficiently deliver quality and safety with improved outcomes.  They propose these methods as a way of changing our healthcare system for the better. 00:33:00Powerful Patientnokaizen,efficiency,cost reduction,eliminate waste,improve safetyHealthcare organizations are under incredible pressure to improve quality and reduce costs. Kaizen, as a methodology, gives us a way to engage front-line staffhttps://www.blogtalkradio.com/powerful-patient/2012/07/05/two-kinds-of-colorHealthhttps://www.blogtalkradio.com/powerful-patient/2012/07/05/two-kinds-of-color/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/07/05/two-kinds-of-colorThu, 05 Jul 2012 19:00:00 GMTTwo Kinds of Color Joyce talks with Deborah Kennedy, author of "Two Kinds of Color". Two Kinds of Color (Createspace) by Deborah Kennedy may be fiction but its characters and events reflect the author’s real life story: growing up black in a racially divided family who were mostly conceived through prostitution when her mother was pimped out by her father. Kennedy proves herself to be a compelling writer with a deep sense of compassion and an intensity that adds raw emotion to her amazing story.  It's not a memoir, but a character-driven mystery thriller with an intriguing plot that deals with the lives of a dysfunctional family made up of a prostitute white mother, a vain and greedy black man, and four children, two white and two black. Two Kinds of Color is both compelling and poignant in its portrayal of a mother’s love and heroic sacrifice for her children. Kennedy’s goal in writing this extraordinary story was to bring hope to women and their children trying to get out of this lifestyle, and to offer encouragement to children of racially divided siblings that no matter what one experiences in life, nothing is more important than family – even if they are two kinds of color…   00:30:00Powerful Patientnomixed race families,prostitution,racially divided family,justice,dysfunctional familyJoyce talks with Deborah Kennedy, author of "Two Kinds of Color". Two Kinds of Color (Createspace) by Deborah Kennedy may be fiction but its characters and evehttps://www.blogtalkradio.com/powerful-patient/2012/06/14/getting-the-most-out-of-cancer-treatmentsHealthhttps://www.blogtalkradio.com/powerful-patient/2012/06/14/getting-the-most-out-of-cancer-treatments/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/06/14/getting-the-most-out-of-cancer-treatmentsThu, 14 Jun 2012 19:00:00 GMTGetting the most out of Cancer TreatmentsRobert Nagourney, MD, talks with Joyce about Chemosensitivity Testing in Cancer Therapy.  Dr. Nagourney is medical director of Rational Therapeutics in Long Beach, California.  He is a leader in the “functional profiling” of human tumors.  “Cancer patients are highly individual in their response to chemotherapies. This is why each patient must be tested to select the most effective drug regimen.”He works with a sample of the live tumor, in its environment, with all its blood vessels intact, in order to understand how best to target it and stop its growth while limiting harm to the patient.He wants patients to understand what the process is trying to accomplish, and what this information can mean for the success of their treatment.“Medicine is a humbling experience and cancer medicine even more so.  Patients often know more than their doctors give them credit for.  Failing to incorporate a patient’s input, experience and wishes into the treatment programs that we design, limits our capacity to provide them the best outcome.”   00:32:00Powerful Patientnocancer treatment,chemotherapy,functional profiling,chemosentivity,oncologyRobert Nagourney, MD, talks with Joyce about Chemosensitivity Testing in Cancer Therapy.  Dr. Nagourney is medical director of Rational Therapeutics in Long Beahttps://www.blogtalkradio.com/powerful-patient/2012/05/31/getting-things-done-in-washingtonHealthhttps://www.blogtalkradio.com/powerful-patient/2012/05/31/getting-things-done-in-washington/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/05/31/getting-things-done-in-washingtonThu, 31 May 2012 19:00:00 GMTGetting Things Done in WashingtonAs questions continue to circulate about who will be the Republican presidential nominee, questions also loom about what's ahead for Washington and the healthcare system. Dr. Joseph Boyett, former adviser to senior officials during the Carter Administration, is out with a new book that sheds light on the future of Washington by taking an investigative look at the past, including a significant section on the struggle for health insurance and the long road to Medicare. Dr. Boyett speaks with Joyce about Healthcare.  Please call in with your questions and concerns. 00:34:00Powerful PatientnoCongress,federal funding,healthcare,medicare,medicaidAs questions continue to circulate about who will be the Republican presidential nominee, questions also loom about what's ahead for Washington and the healthcahttps://www.blogtalkradio.com/powerful-patient/2012/05/24/addiction-hijacking-the-brainFitnesshttps://www.blogtalkradio.com/powerful-patient/2012/05/24/addiction-hijacking-the-brain/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/05/24/addiction-hijacking-the-brainThu, 24 May 2012 19:00:00 GMTAddiction: Hijacking the BrainHarry Haroutunian, MD, physician director of the Betty Ford Center, talks with Joyce about his new book, written with Louis Teresi, MD, .Hijacking the Brain is the first-ever scientific explanation for why Twelve-Step recovery programs are successful in treating addiction. Previously thought to help ease addictions, new (and somewhat startling) research conducted by the University of Illinois shows how exercise can actually prime the brain for addiction. Dr. Haroutunian will speak to the effects of all types of addiction (including exercise, drug, alcohol and more) on the brai.  Please bring your own questions and call in. 00:30:00Powerful Patientnoaddiction,drugs,alcohol,exercise,12-step programsHarry Haroutunian, MD, physician director of the Betty Ford Center, talks with Joyce about his new book, written with Louis Teresi, MD, .Hijacking the Brain ishttps://www.blogtalkradio.com/powerful-patient/2012/05/17/recovery-from-mental-illnessHealthhttps://www.blogtalkradio.com/powerful-patient/2012/05/17/recovery-from-mental-illness/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/05/17/recovery-from-mental-illnessThu, 17 May 2012 19:00:00 GMTRecovery from Mental Illness In celebration of Mental Health Month, Carol Kivler speaks with Joyce about her new book, the ABC's of Recovery from Mental Illness. “I am a daughter, sister, mother, grandmother, friend, educator, speaker, author, and business owner. I am also a woman living courageously and successfully with a mental illness diagnosis. I view my diagnosis as a gift that allows me to share my own experience so that those who treat or live with this disease can see that recovery is possible. Through education and communication, we can reduce stigma by changing the face of mental illness.” Bring your questions to Carol about depression and mental illness and how to find your way to recovery. 00:32:00Powerful Patientnomental health,depression,courageous recovery,ECT,recoveryIn celebration of Mental Health Month, Carol Kivler speaks with Joyce about her new book, the ABC's of Recovery from Mental Illness. “I am a daughter, sister,https://www.blogtalkradio.com/powerful-patient/2012/05/10/managing-fibroids-without-hysterectomyHealthhttps://www.blogtalkradio.com/powerful-patient/2012/05/10/managing-fibroids-without-hysterectomy/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/05/10/managing-fibroids-without-hysterectomyThu, 10 May 2012 20:00:00 GMTManaging Fibroids without Hysterectomy Dr. Stanley West is a gynecologist and reproductive endocrinologist and a leader in the National Uterine Fibroid Foundation.  He is working hard to reduce the number of hysterectomies performed as a result of uterine fibroids.  Nearly one-half of all hysterectomies are performed as a result of fibroids.  Dr. West believes that with earlier diagnosis and with the use of less drastic treatments, it should be possible to avoid hysterectomies in most cases.  His recent book, "The Hysterectomy Hoax," outlines the options available to women with fibroids who want to retain their uterus.  Among them is a myomectomy, or removal of the fibroid itself. Dr. West handles some of the most difficult gynecological surgical cases involving uterine fibroids in the U.S. and has probably performed more myomectomies than any surgeon in the world to date. Joyce and Julie speak with Dr. West about the fibroids that occur in the general population, as well as those that occur because of a genetic condition, Hereditary Leiomyomatosis and Renal Cell Cancer, HLRCC. 00:32:00Powerful Patientnoleiomyoma,HLRCC,fibroids,hysterectomy,myomectomyDr. Stanley West is a gynecologist and reproductive endocrinologist and a leader in the National Uterine Fibroid Foundation.  He is working hard to reduce thehttps://www.blogtalkradio.com/powerful-patient/2012/04/26/e-patients-live-longerHealthhttps://www.blogtalkradio.com/powerful-patient/2012/04/26/e-patients-live-longer/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/04/26/e-patients-live-longerThu, 26 Apr 2012 19:00:00 GMTe-Patients Live Longer Nancy Finn, author of “e-Patients Live Longer, The Complete Guide to Managing Health Care Using Technology,” focuses on patient empowerment, engagement and education and the importance of patients’ taking charge of their healthcare and using he tools of technology available to them, including the web and social networks. Nancy provides tips and guidelines that include providing people with specific strategies for communicating more effectively with their providers, engaging as a part of their health care team, insuring their safety and privacy, understanding the cost of their health, and using online resources more effectively for better, safer, quality care. Nancy speaks with Joyce about patient empowerment.  Please join us and ask your own questions. 00:32:00Powerful Patientnoe-patient,patient empowerment,taking charge of your healthcare,healthcare,managing your healthcare teamNancy Finn, author of “e-Patients Live Longer, The Complete Guide to Managing Health Care Using Technology,” focuses on patient empowerment, engagement and eduhttps://www.blogtalkradio.com/powerful-patient/2012/04/19/balancing-your-digestionHealthhttps://www.blogtalkradio.com/powerful-patient/2012/04/19/balancing-your-digestion/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/04/19/balancing-your-digestionThu, 19 Apr 2012 19:00:00 GMTBalancing Your Digestion Many factors have to play together to keep our digestion in balance -- food, water, pancreatic enzymes, insulin, and many other factors that most of us are not aware of!  People with pancreatic cysts and tumors may find that the products of the pancreas are not being delivered to the digestive tract, causing bloating, discomfort, diarrhea, or inability to digest particular kinds of foods (eg fats). Tina Gruner is a Certified Diabetes Educator and Registered Dietitian who has worked with people with cystic fibrosis, pancreatic insuffiency, diabetes, and many other such imbalances.  She talks with Joyce about how people can find the help they need to analyze and correct these imbalances and improve their quality of life. 00:32:00Powerful Patientnopancreas,pancreatic insufficiency,pancreatic cysts,pancreatic cancer,cystic fibrosisMany factors have to play together to keep our digestion in balance -- food, water, pancreatic enzymes, insulin, and many other factors that most of us arehttps://www.blogtalkradio.com/powerful-patient/2012/04/13/curing-the-post-lsd-syndromeHealthhttps://www.blogtalkradio.com/powerful-patient/2012/04/13/curing-the-post-lsd-syndrome/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/04/13/curing-the-post-lsd-syndromeFri, 13 Apr 2012 17:00:00 GMTCuring the Post-LSD Syndrome Dr. Edwin Roth has studied many people who once tried LSD and has discovered that there are log-term effects on the brain.  He believes that he can cure these effects in a short period of time. 00:31:00Powerful Patientnobrain,LSD,post-LSD,psychology,depressionDr. Edwin Roth has studied many people who once tried LSD and has discovered that there are log-term effects on the brain.  He believes that he can cure thesehttps://www.blogtalkradio.com/powerful-patient/2012/03/29/find-your-prince-in-a-sea-of-toadsHealthhttps://www.blogtalkradio.com/powerful-patient/2012/03/29/find-your-prince-in-a-sea-of-toads/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/03/29/find-your-prince-in-a-sea-of-toadsThu, 29 Mar 2012 19:00:00 GMTFinding your Prince in a Sea of Toads Dr. Kenneth Ryan, father of three girls, has written a book about what most fathers would like to tell their daughters – and should!  As a relationship expert, Dr. Ryan seeks to help parents have normal, comfortable conversations about these important life topics.  No one feels the pain of a bad boyfriend more than the dad so start talking before she has a boyfriend - before her mind turns to mush. Dr. Ryan talks with Joyce about the most common mistakes parents make in broaching these topics, and how to actually get your daughter to listen – not by hammering our points home, but by enrolling our daughters in the conversation and helping them think it through in a different way.  Most fathers think that their daughters won’t listen to them.  Unless your relationship has gone seriously toxic, most children really do care what their parents think. However, sometimes it takes them a while to process challenging ideas.  We don't want our daughters to go out and make big mistakes because we didn't have the courage to tell them the hard truths.  Your own mistakes in life do not disqualify you from sharing your wisdom and insight.  Come talk with Dr. Ryan about what holds you back, and learn some hints for having a good conversation with your daughter. 00:33:00Powerful Patientnosex education,teenage girls,parenting for fathers,parenting,talking with teensDr. Kenneth Ryan, father of three girls, has written a book about what most fathers would like to tell their daughters – and should!  As a relationship expert,https://www.blogtalkradio.com/powerful-patient/2012/03/22/addiction-is-a-family-problemHealthhttps://www.blogtalkradio.com/powerful-patient/2012/03/22/addiction-is-a-family-problem/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/03/22/addiction-is-a-family-problemThu, 22 Mar 2012 19:00:00 GMTAddiction through the eyes of the children Interventions didn’t work. The first two stints in rehab didn’t work. Not even jail time could convince Christie L. Appel’s son to stop drinking. And who was most affected? His children. Appel tells the story of what led her son to sobriety through the eyes of her grandson in her new book, Christian’s Story. Throughout this emotional journey, Christie discovered there isn’t much assistance for children of addicts. She wants this book to help the smallest victims of addiction. “When Keith started struggling with alcoholism it became a family problem, but we didn’t have the tools to make sense of it all,” says Appel. “It became clear that I was a co-dependent and an enabler. As a family, we all had to do our part.” The Appel family wants Christian’s Story to bring faith and encouragement to children who have been affected by alcoholism. Their story has a happy ending and shows that miracles can happen. 00:34:00Powerful Patientnoalcoholism,addiction,co-dependent,intervention,children of alcoholicsInterventions didn’t work. The first two stints in rehab didn’t work. Not even jail time could convince Christie L. Appel’s son to stop drinking. And who was mhttps://www.blogtalkradio.com/powerful-patient/2012/03/15/sweet-acceptance-vs-bitter-resistanceHealthhttps://www.blogtalkradio.com/powerful-patient/2012/03/15/sweet-acceptance-vs-bitter-resistance/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/03/15/sweet-acceptance-vs-bitter-resistanceThu, 15 Mar 2012 19:00:00 GMTSweet Acceptance vs Bitter ResistanceThe New Year is the time of year when promises are made and oaths are sworn. But really any time is a good time to make serious changes that will improve your life and your health. Don't go even one more month with that nasty smoking habit, that expensive drug habit, or that painful drinking habit. Dr. Peter Andrew Sacco has some helpful suggestions to help you modify your habits. In his book "Sweet Acceptance Versus Bitter Resistance," he includes practical and theoretical knowledge for overcoming addictions, along with a 3-tier approach of psychology, spiritualism and the law of attraction. Joyce talks with Dr. Sacco about his approach to modifying our behavior and choosing health. 00:31:00Powerful Patientnobehavioral modification,breaking bad habits,quit smoking,drug abuse,alcohol abuseThe New Year is the time of year when promises are made and oaths are sworn. But really any time is a good time to make serious changes that will improve yourhttps://www.blogtalkradio.com/powerful-patient/2012/03/08/wrinkles-dont-hurt-aging-mindfullyCaregivinghttps://www.blogtalkradio.com/powerful-patient/2012/03/08/wrinkles-dont-hurt-aging-mindfully/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/03/08/wrinkles-dont-hurt-aging-mindfullyThu, 08 Mar 2012 20:00:00 GMTWrinkles Don’t Hurt: Aging MindfullyWe all know that as we age we should welcome each day with joy and optimism, but it’s not always easy to know how to get started especially if we suffer from aches and pains or look in the mirror and wonder what on earth happened to that young person who used to stare back at us. Ruth Fishel’s latest book, Wrinkles Don’t Hurt, is not only inspirational and loaded with practical suggestions, but it acts as a gentle guide coaching us in how to use the power of our mind to learn to live each day to the max! Joyce talks with Ruth Fishel about aging, especially when one has a serious medical condition or disability. 00:32:00Powerful Patientnoaging,wrinkles,disability,pain,copingWe all know that as we age we should welcome each day with joy and optimism, but it’s not always easy to know how to get started especially if we suffer from achttps://www.blogtalkradio.com/powerful-patient/2012/03/01/to-be-or-not-to-be--your-choiceHealthhttps://www.blogtalkradio.com/powerful-patient/2012/03/01/to-be-or-not-to-be--your-choice/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/03/01/to-be-or-not-to-be--your-choiceThu, 01 Mar 2012 20:00:00 GMTTo be or not to be -- your choice! Barbara Hofmeister wants to inspire you to live the life you choose -- your choice! In addition to her "To Be" show at BlogTalkRadio, she has written a book which she will be discussing with Joyce/ The book is about living a life of choice and purpose. It takes the reader through a step by step process to discover what has been holding them back and how they can move forward - towards their destiny and fulfillment. Barbara has practical advice and easy to use techniques. Come ask and listen to Barbara's ideas for how you can be in control of your life, in spite of the challenges life throws your way. 00:32:00Powerful Patientnocoping,challenges,choice,stress management,purposeBarbara Hofmeister wants to inspire you to live the life you choose -- your choice! In addition to her "To Be" show at BlogTalkRadio, she has written a book whttps://www.blogtalkradio.com/powerful-patient/2012/02/23/living-without-a-pancreasHealthhttps://www.blogtalkradio.com/powerful-patient/2012/02/23/living-without-a-pancreas/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/02/23/living-without-a-pancreasThu, 23 Feb 2012 20:00:00 GMTLiving without a Pancreas People who have cysts or tumors in the pancreas often have digestive issues as a side effect.  The pancreas makes an array of important enzymes and hormones that serve to digest your food.  When one or more of these is missing, you may have trouble digesting sugars or fats or other important elements of your food.  In extreme cases, the food passes through your body and out the other end, but the essential ingredients don't get to your cells.  You might lose a lot of weight and even look anorexic. The most well-known of the pancreatic hormones is insulin, but it's only one of many. Joyce talks with Jacki H., a woman who has lived without a pancreas for decades, leading an active life, traveling and eating lots of different foods..  She has learned how to manage and live a healthy life.  Her experience is very instructive to people living with gastric imbalances. 00:31:00Powerful Patientnopancreas,pancreatic insufficiency,gastroenterology,diarrhes,fatty stoolPeople who have cysts or tumors in the pancreas often have digestive issues as a side effect.  The pancreas makes an array of important enzymes and hormones thhttps://www.blogtalkradio.com/powerful-patient/2012/02/16/hip-dysplasia-affects-more-than-the-elderlyHealthhttps://www.blogtalkradio.com/powerful-patient/2012/02/16/hip-dysplasia-affects-more-than-the-elderly/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/02/16/hip-dysplasia-affects-more-than-the-elderlyThu, 16 Feb 2012 20:00:00 GMTHip Dysplasia affects more than the elderly The effects of hip dysplasia are a concern for people of all ages, not just the elderly.  Children are being diagnosed at very young ages, and is the leading cause of arthritis in young women. Dr. Charles Price is a pediatrician specializing in pediatric orthopedic care. He has developed and chaired the International Pediatric Orthopedic Society meeting since its inception 10 years ago. Dr. Price has studied the causes and effects of hip dysplasia in young children.  Effects may be immediately obvious, or may not show up for decades.  "Swaddling babies with their legs straight can actually dislocate a baby's hips," says Dr. Price.  He will tell us how to wrap a baby comfortably to avoid the problem, and will suggest ways that older children or even adults may be helped. 00:25:00Powerful Patientnopediatric orthopedics,swaddling,baby care,hip dysplasia,arthiritisThe effects of hip dysplasia are a concern for people of all ages, not just the elderly.  Children are being diagnosed at very young ages, and is the leading chttps://www.blogtalkradio.com/powerful-patient/2012/02/09/psa-mammograms-to-test-or-not-to-testHealthhttps://www.blogtalkradio.com/powerful-patient/2012/02/09/psa-mammograms-to-test-or-not-to-test/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/02/09/psa-mammograms-to-test-or-not-to-testThu, 09 Feb 2012 20:00:00 GMTPSA, mammograms: To test or not to test? When doctors disagree with each other about what to do for our care, we get nervous and confused.  When government or professional agencies disagree in the press, we get even more confused.  Recently there have been conflicting “recommendations” about mammograms and PSA tests for breast and prostate cancer. The United States Preventive Services Task Force published its findings Oct. 7, 2011, in the Annals of Internal Medicine. The task force concluded that PSA screening saves few lives or none, while the harms are real and significant. But deaths due to prostate cancer have declined in recent years, a trend many urologists credit largely to PSA screening and to early detection of life-threatening tumors. The American Urological Association issued a statement disagreeing with the task force. “When interpreted appropriately, the PSA test provides important information in the diagnosis, pre-treatment staging or risk assessment and monitoring of prostate cancer patients,” according to the statement. Arnold Melman, M.D., is a member of the Department of Urology of the Albert Einstein College of Medicine/Montefiore Medical Center and in private practice in New York City.  He is the author of the recently released published book “After Prostate Cancer: A What-Comes-Next Guide to a Safe and Informed Recovery.” Dr. Melman talks with Joyce about the pros and cons of the PSA test. 00:37:00Powerful PatientnoPSA test,urology,prostate cancer,PSA controversy,medical screeningWhen doctors disagree with each other about what to do for our care, we get nervous and confused.  When government or professional agencies disagree in the prehttps://www.blogtalkradio.com/powerful-patient/2012/02/02/breaking-news-about-vhlHealthhttps://www.blogtalkradio.com/powerful-patient/2012/02/02/breaking-news-about-vhl/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/02/02/breaking-news-about-vhlThu, 02 Feb 2012 20:00:00 GMTBreaking news about VHL! Fresh back from the VHL Symposium in Houston, Joyce Graff and guests talk about the highlights of the conference, and what they gained by going. Von HIppel-Lindau disease is a genetic cancer syndrome.  The VHL gene plays a role in most kidney cancer in the general population and at least 30% of all pheochromocytomas.  It is a challenging condition to live with.  Scientifically, research on the VHL gene is helping to unlock the secrets of cancer for everyone. Please feel free to call in and ask questions. 00:46:00Powerful Patientnovon Hippel-Lindau,genetic cancer,VHL,angiogenesis,cure cancerFresh back from the VHL Symposium in Houston, Joyce Graff and guests talk about the highlights of the conference, and what they gained by going. Von HIppel-Lihttps://www.blogtalkradio.com/powerful-patient/2012/01/19/should-i-go-to-a-conference-about-my-diseaseHealthhttps://www.blogtalkradio.com/powerful-patient/2012/01/19/should-i-go-to-a-conference-about-my-disease/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/01/19/should-i-go-to-a-conference-about-my-diseaseThu, 19 Jan 2012 20:00:00 GMTShould I go to a conference about my disease? Joyce speaks with people who attended the VHL Conference in Houston last June.  For some, it was their first such meeting.  In addition to the expense and time commitment of going to a conference about your disease, there are always emotional barriers to cross -- Will it be a downer?  Will I be upset?  Will the people I meet be so sick I will be terrified? Please join the conversation and ask your own questions about whether it was worthwhile to make the trip, meet other people dealing with your disease, and meet the physicians and researchers working to find a cure. We will take live calls during the conversation. 00:31:00Powerful Patientnorare disease,conference,support groups,health,emotional supportJoyce speaks with people who attended the VHL Conference in Houston last June.  For some, it was their first such meeting.  In addition to the expense and timehttps://www.blogtalkradio.com/powerful-patient/2012/01/12/filmmaker-talks-about-life-with-a-rare-diseaseHealthhttps://www.blogtalkradio.com/powerful-patient/2012/01/12/filmmaker-talks-about-life-with-a-rare-disease/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/01/12/filmmaker-talks-about-life-with-a-rare-diseaseThu, 12 Jan 2012 20:00:00 GMTFilmmaker talks about life with a rare diseaseTarek McCarthy, an award-winning filmmaker, will be reaching out to share his insights into living with a rare disease. Diagnosed with VHL in 2004, he underwent multiple surgeries to remove tumors from his brain in addition to the removal of his left adrenal gland.  After being “stable” for several years, his recent MRIs have revealed the growth of new tumors. Faced with this latest challenge, he will be sharing the elements in his life that have awarded him the inspiration to help him overcome the hurdles that VHL and other rare diseases present to us all. 00:38:00Powerful Patientnofilmmaker,health,rare disease,living strong,cancerTarek McCarthy, an award-winning filmmaker, will be reaching out to share his insights into living with a rare disease. Diagnosed with VHL in 2004, he underwenhttps://www.blogtalkradio.com/powerful-patient/2012/01/05/helping-victims-of-bullyingHealthhttps://www.blogtalkradio.com/powerful-patient/2012/01/05/helping-victims-of-bullying/#commentshttp://www.blogtalkradio.com/powerful-patient/2012/01/05/helping-victims-of-bullyingThu, 05 Jan 2012 20:00:00 GMTHelping Victims of Bullying Israel C. "Izzy" Kalman has been working as a school psychologist and psychotherapist since 1978. For over two decades, he has been intensively helping victims of bullying, initially children and after a few years, adults as well.  He realized that the same principles apply to interpersonal problems throughout the lifetime. More recently, he has been teaching these methods to mental health professionals and educators primarily throughout the United States and Canada. He has developed a method which can be applied quickly and easily to help empower victims of bullying, which is consistent with all major schools of psychology, philosophy and religion.  Izzy speaks with Joyce about bullying on the Powerful Patient. 00:35:00Powerful Patientnobullying,school children,office pressures,self-defense,empowermentIsrael C. "Izzy" Kalman has been working as a school psychologist and psychotherapist since 1978. For over two decades, he has been intensively helping victimshttps://www.blogtalkradio.com/powerful-patient/2011/10/27/support-for-children-whose-siblings-have-special-needsHealthhttps://www.blogtalkradio.com/powerful-patient/2011/10/27/support-for-children-whose-siblings-have-special-needs/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/10/27/support-for-children-whose-siblings-have-special-needsThu, 27 Oct 2011 19:00:00 GMTSupport for Children whose siblings have special needs Elizabeth Batson’s new book *I Have Needs Too! Supporting the Child Whose Sibling Has Special Needs* combines quotes and drawings from kids whose siblings have special needs with parenting help from a professional. The book offers parents insight and practical advice on how to help their children deal with issues such as embarrassment, the wish for understanding, the sense  of responsibility, the importance of fairness, the need for protection, and the sense love and joy that they share with their brother or sister. The book is short (30 pages), easy to readand offers realistic advice. Batson holds a master's degree in counseling psychology and has counseled people with disabilities and their family members. She also co-leads her local SibShop, part of the national sibling support project, http://www.siblingsupport.org Ms. Batson will take calls from listeners during her conversation with Joyce. 00:28:00Powerful Patientnochildren,special needs,siblings,family support,cancerElizabeth Batson’s new book *I Have Needs Too! Supporting the Child Whose Sibling Has Special Needs* combines quotes and drawings from kids whose siblings havehttps://www.blogtalkradio.com/powerful-patient/2011/10/20/cleaning-up-our-personal-environmentsHealthhttps://www.blogtalkradio.com/powerful-patient/2011/10/20/cleaning-up-our-personal-environments/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/10/20/cleaning-up-our-personal-environmentsThu, 20 Oct 2011 19:00:00 GMTCleaning up our Personal Environments Lisa Nagy spent years with doctors trying to figure out what was wrong with her.  Eventually she realized that the doctors were not going to wave a magic wand and cure her, that she needed to take some action herself.  She cleaned up her environment, minimizing all toxic substances, to make sure that her immune system could focus on making her well, not fighting elements in her environment that were making her sick.  It worked! Come talk with Lisa about what she discovered about the everyday pollution we all live with and how to minimize the irritants in our personal environments. 00:35:00Powerful Patientnopollution,toxic substances,cleaning products,air quality,immune systemLisa Nagy spent years with doctors trying to figure out what was wrong with her.  Eventually she realized that the doctors were not going to wave a magic wandhttps://www.blogtalkradio.com/powerful-patient/2011/10/06/brain-injury-and-our-herosHealthhttps://www.blogtalkradio.com/powerful-patient/2011/10/06/brain-injury-and-our-heros/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/10/06/brain-injury-and-our-herosThu, 06 Oct 2011 15:00:00 GMTBrain Injury and our Heros A recent University of North Carolina study showed that the average college football player receives over 300 blows to the head in four seasons. In the pros it is even higher. Autopsy studies show that NFL players with early dememtia do have significant anatomical changes to their brains. Dave Duerson the former Chicago Bears safety shot himself in the chest, and not in the head, to save his brain for analysis.  Before he killed himself he left a note to his family to donate his brain to the NFL-supported Center for the Study of Traumatic Encephalopathy. After analysis, the Center announced that Duerson’s brain had developed the same trauma-induced disease recently found in more than 20 deceased players. Dr. Ronald Glasser, in his new book /Broken Bodies/Shattered Minds/ explores the traumatic injuries of soldiers on the battlefield and football  players on the gridiron.” The military is now using Tasor-MRI’s to document traumatic injuries to the brain following exposure to shock waves from exploding IED’s that are not found on MRI’s or CT scans.”  He says. “It is only a matter of time before the NFL Players’ Association demands Tasor-MRI studies on the effect of a player’s impact on multiple helmet-to-helmet collisions.” Former U.S. Army physician Dr. Ron Glasser examines the changing tactics of warfare and the resulting wounds focusing on the traumatic effects of concussive and shock wave injuries to the brain. He is a resident of Minneapolis and a graduate of Johns Hopkins University and Medical School. 00:37:00Powerful PatientnoMTBI,Traumatic brain injury,recivering from brain surgery,concussion,soldiersA recent University of North Carolina study showed that the average college football player receives over 300 blows to the head in four seasons. In the pros ithttps://www.blogtalkradio.com/powerful-patient/2011/09/29/unbreak-your-healthCaregivinghttps://www.blogtalkradio.com/powerful-patient/2011/09/29/unbreak-your-health/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/09/29/unbreak-your-healthThu, 29 Sep 2011 19:00:00 GMTUnbreak Your Health Are you sinking in the Quicksand of Pain, are you stranded in the Mountains of Misery or simply lost in a Forest of Symptoms?  After a disappointing trip to the Mayo Clinic, author Alan E. Smith admits, "I suddenly became very open-minded about complementary and alternative medicine (CAM)."  Like many people he turned to new options after he'd run out of treatments in mainstream medicine.Fortunately he found some therapies that have been very beneficial and have restored much of his health.  After his own success he wanted to share the hope that CAM can offer by writing his first book, UnBreak Your Health. Alan Smith talks with Joyce on the Powerful Patient August 24, 2011.  00:36:00Powerful Patientnocomplementary medicine,alternative medicine,CAM,pain,multiple symptomsAre you sinking in the Quicksand of Pain, are you stranded in the Mountains of Misery or simply lost in a Forest of Symptoms?  After a disappointing trip to thhttps://www.blogtalkradio.com/powerful-patient/2011/09/22/befriended-her-cancer-and-healed-herselfCaregivinghttps://www.blogtalkradio.com/powerful-patient/2011/09/22/befriended-her-cancer-and-healed-herself/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/09/22/befriended-her-cancer-and-healed-herselfThu, 22 Sep 2011 19:00:00 GMTBefriended her cancer and healed herselfFor Denise DeSimone, cancer was a chance to live a better, more fulfilling life.An active and healthy 49-year-old, DeSimone suddenly faced the threat of having only three months to live when she was diagnosed with stage IV throat and neck cancer. While most would start naming beneficiaries, DeSimone named her cancer and gave it permission to teach her the lessons she needed to learn.“The presence of cancer was the best present I ever received,” said DeSimone. “Befriending my cancer as opposed to battling it was critical to my overall health. The world is constantly waging war on so many fronts, from drugs and poverty to AIDS and terrorism – I knew that waging a war with something that was already raging within me would be ludicrous.”She recounts her journey of courage, strength and deep spirituality in her new memoir, From Stage IV to Center Stage, to empower readers to find the opportunities in their struggles and turn pain into purpose.During rigorous treatments of both traditional and alternative medicine – in addition to regular doses of self-love – DeSimone vowed that should she live, she would use her life to inspire others. And she’s done just that: Although the semi-professional singer was told she may never sing again, just 22 months after diagnosis, she sang the National Anthem before a sell-out crowd of 35,000 Boston Red Sox fans at Fenway Park. One month later, she pedaled 87 miles in one day to raise money for children's cancer research.Denise DeSimone is an ordained interfaith minister, an inspirational and motivational speaker and a singer. She is certified in multiple alternative healing modalities and is a wellness coach to cancer patients. DeSimone also created Pray Peace, a multimedia offering of personal and global peace. Currently, she resides between Greensboro, N.C., and Newburyport, Mass. This is her first book.00:28:00Powerful Patientnofaith,cancer,head and neck cancer,esophageal cancer,healingFor Denise DeSimone, cancer was a chance to live a better, more fulfilling life.An active and healthy 49-year-old, DeSimone suddenly faced the threat of havinghttps://www.blogtalkradio.com/powerful-patient/2011/09/01/healing-depression-and-bipolar-disorder-without-drugsHealthhttps://www.blogtalkradio.com/powerful-patient/2011/09/01/healing-depression-and-bipolar-disorder-without-drugs/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/09/01/healing-depression-and-bipolar-disorder-without-drugsThu, 01 Sep 2011 19:00:00 GMTHealing Depression and Bipolar Disorder without Drugs Gracelyn Guyol’s fear of cancer pushed her to become a self-taught expert on healing  without drugs. The former California public relations executive owned a 7-person agency from 1984-1992.  After its sale, she moved to New England, was diagnosed as bipolar II, and placed on an antidepressant. Within a year, the rapid growth of breast cysts and tumors caused her to have surgery twice in 12 months.  Frightened, Gracelyn read dozens of books, searched online, and worked with a Naturopathic Doctor to overhaul her diet, take optimum natural supplements, and eliminate chemicals or other  potential toxins from her environment that might cause cells to mutate.  Finally, after discontinuing the antidepressant, her latest tumor disappeared in two months. Refusing all psychiatric drugs, she followed a similar healing process that halted bipolar symptoms by 2002 using only holistic remedies.  Healing Depression & Bipolar Disorder Without Drugs (2006) Who's Crazy Here?  Steps to Recovery without drugs for 9 mental disorders (2010) Gracelyn speaks with Joyce on the Powerful Patient.  She will be taking calls and questions from listeners. 00:52:00Powerful Patientnodepression,bipolar disorder,antidepressant,cancer,anxietyGracelyn Guyol’s fear of cancer pushed her to become a self-taught expert on healing  without drugs. The former California public relations executive owned a 7https://www.blogtalkradio.com/powerful-patient/2011/08/11/pain-is-essential-for-good-healthCaregivinghttps://www.blogtalkradio.com/powerful-patient/2011/08/11/pain-is-essential-for-good-health/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/08/11/pain-is-essential-for-good-healthThu, 11 Aug 2011 19:00:00 GMTPain is Essential for Good HealthCan pain be a good thing? According to Dr. Joanne Messenger, pain isn’t only good – it’s an essential tool needed for the road to overall mental and physical health. "Disease and pain are your body’s way of telling you what is wrong – like where you need to change what you’re doing,” she says. Her new book, Be in One Peace, details how to understand pain as a way to pinpoint mental and physical issues that have been ignored and need to be resolved. Dr. Messenger speaks with Joyce on the Powerful Patient.  00:53:00Powerful Patientnopain,chiropractor,mental health,physical health,understanding painCan pain be a good thing? According to Dr. Joanne Messenger, pain isn’t only good – it’s an essential tool needed for the road to overall mental and physicalhttps://www.blogtalkradio.com/powerful-patient/2011/07/21/could-shermans-stroke-have-been-preventedHealthhttps://www.blogtalkradio.com/powerful-patient/2011/07/21/could-shermans-stroke-have-been-prevented/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/07/21/could-shermans-stroke-have-been-preventedThu, 21 Jul 2011 19:00:00 GMTCould Sherman's stroke have been prevented?Government contractor Sherman Turner thought fighting discrimination in the workplace was his hardest battle - until he suffered a paralyzing stroke, losing most of his memory and his ability to speak. As part of his rehabilitation, his doctors suggested learning another language to "wake up" key parts of his brain.  After immersing himself in the Kenyan culture, Turner regained his speech and began the long road to recovery. "Looking back, I wish I would have known the signs to watch for," says Turner. "I'm not sure I could have prevented the stroke completely, but I wonder if I could have made it less of a threat. Everyone needs to know the signs of a stroke. It could make all the difference." Turner writes of his struggles in his new book, Kenya: Rehabilitation in time for National Stroke Awareness Month. 00:50:00Powerful Patientnostroke,heart disease,high blood pressure,signs of stroke,preventing strokeGovernment contractor Sherman Turner thought fighting discrimination in the workplace was his hardest battle - until he suffered a paralyzing stroke, losing moshttps://www.blogtalkradio.com/powerful-patient/2011/06/30/where-to-get-a-new-kidneyHealthhttps://www.blogtalkradio.com/powerful-patient/2011/06/30/where-to-get-a-new-kidney/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/06/30/where-to-get-a-new-kidneyThu, 30 Jun 2011 19:00:00 GMTMaximizing Kidney Transplantation: the Road Forward Kidney disease is skyrocketing, but less than 4% of patients with kidney failure are being transplanted for a more normal life. Kidneys4Lives founders Malcolm Broderick and Ed Broderick believe that the solution is largely societal, not medical. Their groundbreaking Maximum Transplant Program calls for a well-organized network of self-sustaining community outreach centers, connected with a powerful website and mobile technology. A critical component will be building a collaborative care circle for each patient, and empowering disadvantaged patients through mobile devices.  Come ask your questions and join the conversation. 01:01:00Powerful Patientnokidney,end stage renal disease,renal failure,transplantation,kidney donorKidney disease is skyrocketing, but less than 4% of patients with kidney failure are being transplanted for a more normal life. Kidneys4Lives founders Malcolmhttps://www.blogtalkradio.com/powerful-patient/2011/06/23/open-mike--come-ask-anything-abot-vhlHealthhttps://www.blogtalkradio.com/powerful-patient/2011/06/23/open-mike--come-ask-anything-abot-vhl/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/06/23/open-mike--come-ask-anything-abot-vhlThu, 23 Jun 2011 19:00:00 GMTOpen Mike! - come ask anything abot VHL Missed the Houton meeting? or forgot to ask one more question?  Please join Joyce Graff today, and feel free to ask anything about von Hippel-Lindau disease. 01:09:00Powerful PatientnoVHL,cancer,eye,kidney,brainMissed the Houton meeting? or forgot to ask one more question?  Please join Joyce Graff today, and feel free to ask anything about von Hippel-Lindau disease.https://www.blogtalkradio.com/powerful-patient/2011/06/09/from-ethiopian-refugee-to-doctorHealthhttps://www.blogtalkradio.com/powerful-patient/2011/06/09/from-ethiopian-refugee-to-doctor/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/06/09/from-ethiopian-refugee-to-doctorThu, 09 Jun 2011 19:00:00 GMTCourage Comes in Many Forms David G. Hallman speaks with Joyce about his new book, August Farewell, his account of the last days spent with his partner of 33 years, Bill Conklin. Bill was diagnosed with terminal cancer, and they chose to spend those last days of quality time together.   "A long-term, loving, faith-based relationship is possible," Hallman says.  Dealing honestly and openly with the death of a loved one is possible, including having the courage to say goodbye." From a devastating diagnosis of stage 4 pancreatic cancer, it was only 16 days before Bill passed away. The choices they made, and the love and care they shared during those final days is a lesson for us all. David and Joyce talk about the importance of thinking through how we would want the end of our own life to go, and communicating that to our loved ones, so that they are in the position of carrying out our wishes rather than making difficult decisions without our guidance. 00:53:00Powerful Patientnocourage,cancer,palliative care,hospice,advance directiveDavid G. Hallman speaks with Joyce about his new book, August Farewell, his account of the last days spent with his partner of 33 years, Bill Conklin. Bill washttps://www.blogtalkradio.com/powerful-patient/2011/06/02/developing-local-medical-resourcesHealthhttps://www.blogtalkradio.com/powerful-patient/2011/06/02/developing-local-medical-resources/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/06/02/developing-local-medical-resourcesThu, 02 Jun 2011 18:30:00 GMTDeveloping local medical resources Surgeon, George Washington University Medical Professor and 2009 Humanitarian of the year recipient, Dr. Glenn Geelhoed, MD just returned this year from one of his hundred medical missions to the outreaches of Sudan – the team name Team Rubicon.  Dr. Geelhoed has been taking his medical and surgical training to serve ‘the bottom billion’ for nearly 2 decades and his medical approaches are unconventional, unparallel and unbelievably successful.  Dr. Geelhoed speaks with Joyce about lessons he has learned – how NOT to serve the poor as just “white doctors off a plane,” but instead to focus on teaching communities to develop their own internal resources and become less dependent on imported healers.  He has learned to respect local practices that he cannot change, while standing firm against any cultural practices that dehumanize and destroy.  His goal is to help communities learn to care for themselves.  He believes that we need to take a hard look at global medical efforts and change the focus from short-term relief to long-term development.  His new book is "Gifts from the Poor" 00:49:00Powerful Patientnomedical relief,tribal medicine,natural medicine,doctors without borders,medical missionSurgeon, George Washington University Medical Professor and 2009 Humanitarian of the year recipient, Dr. Glenn Geelhoed, MD just returned this year from one ofhttps://www.blogtalkradio.com/powerful-patient/2011/05/05/kidney-dialysis-shades-of-lifeHealthhttps://www.blogtalkradio.com/powerful-patient/2011/05/05/kidney-dialysis-shades-of-life/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/05/05/kidney-dialysis-shades-of-lifeThu, 05 May 2011 19:00:00 GMTKidney Dialysis: Shades of Life Dr. Mohammad Akmal, a respected U.S. dialysis director, and Vasundhara Ramanujan, the mother of a kidney dialysis patient, have collaborated on a book, SHADES OF LIFE, giving us a personal glimpse into the physical, emotional, and psychological impact of kidney disease.  The book educates people with kidney disease, and people healthy enough to consider donating a kidney to help a family member or other person in need.  It is also a tool for people who have degenerative kidney disease who may be at risk of kidney failure.  It was published during the Kidney Foundation’s Kidney Month, to help increase awareness of kidney disease.  Joyce speaks with the authors, and they will take questions from the audience. 00:55:00Powerful Patientnokidney disease,dialysis,kidney transplant,kidney failure,losing kidney functionDr. Mohammad Akmal, a respected U.S. dialysis director, and Vasundhara Ramanujan, the mother of a kidney dialysis patient, have collaborated on a book, SHADEhttps://www.blogtalkradio.com/powerful-patient/2011/04/25/husbands-new-endeavor--advice-for-giffords-recoveryHealthhttps://www.blogtalkradio.com/powerful-patient/2011/04/25/husbands-new-endeavor--advice-for-giffords-recovery/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/04/25/husbands-new-endeavor--advice-for-giffords-recoveryMon, 25 Apr 2011 19:00:00 GMTHusband's New Endeavor - Advice for Gifford's Recovery Janet Cromer has a good idea of what astronaut Mark Kelly and his wife, Congresswoman Gabrielle Giffords have ahead of them, as Giffords recovers from being shot in January.  "My husband, Alan, suffered a severe brain injury as the result of a heart attack and cardiac arrest," said Janet Cromer, a career nurse and healthcare writer who specializes in brain injury. "Mark is going to have a dual role as spouse and caregiver and he is going to be as much a part – if not more – of his wife’s recovery as any doctor working on her case.” Cromer is author of the book "Professor Cromer Learns to Read: A Couple’s New Life after Brain Injury", a chronicle of how she tended to her husband’s recovery, and how it affected them in terms of both their emotional health and their physical health, as well as their marriage. Her 35 years in the healthcare field, along with her personal journey as wife and caregiver, led her to create this book, with tips for helping a brain injury victim learn how to read, write and think again. Janet Cromer speaks with Joyce on the Powerful Patient and will take questions from the audience. 00:52:00Powerful Patientnobrain injury,traumatic brain injury,TBI,stroke,rehabilitationJanet Cromer has a good idea of what astronaut Mark Kelly and his wife, Congresswoman Gabrielle Giffords have ahead of them, as Giffords recovers from beinghttps://www.blogtalkradio.com/powerful-patient/2011/04/21/how-to-em-power-yourself-as-a-patientHealthhttps://www.blogtalkradio.com/powerful-patient/2011/04/21/how-to-em-power-yourself-as-a-patient/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/04/21/how-to-em-power-yourself-as-a-patientThu, 21 Apr 2011 19:00:00 GMT10 Mistakes every Patient Makes, and How to Fix Them. Joyce speaks with patient advocate and author Trisha Torrey, a nationally recognized writer, speaker and workshop teacher on issues related to patient advocacy, who refers to herself as "every patient's advocate". A former marketing executive, Torrey became a patient advocate after enduring a misdiagnosis of cancer in 2004. She is author of the book, You Bet Your Life! The 10 Mistakes Every Patient Makes (How to Fix Them to Get the Healthcare You Deserve). Trisha will be taking questions from the listening audience. 01:02:00Powerful Patientnoempowered patient,patient advocate,healthcare,mistakes,talking with doctorsJoyce speaks with patient advocate and author Trisha Torrey, a nationally recognized writer, speaker and workshop teacher on issues related to patient advocahttps://www.blogtalkradio.com/powerful-patient/2011/04/07/the-mystery-of-riskHealthhttps://www.blogtalkradio.com/powerful-patient/2011/04/07/the-mystery-of-risk/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/04/07/the-mystery-of-riskThu, 07 Apr 2011 19:00:00 GMTThe Mystery of RiskWhat behaviors during pregnancy may lead to developmental, learning, and behavioral difficulties in our unborn children? What level of alcohol is safe? Joyce talks with Dr. Ira Chasnoff about these and other issues that may influence the lives of our children, and how to work with at-risk children if you are the parent or adoptive parent of such a child. 00:49:00Powerful Patientnopregnancy,alcohol and pregnancy,fetal alcohol syndrome,drugs and pregnancy,parenting children at riskWhat behaviors during pregnancy may lead to developmental, learning, and behavioral difficulties in our unborn children? What level of alcohol is safe? Joycehttps://www.blogtalkradio.com/powerful-patient/2011/03/24/womenpause--feeling-good-through-menopauseHealthhttps://www.blogtalkradio.com/powerful-patient/2011/03/24/womenpause--feeling-good-through-menopause/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/03/24/womenpause--feeling-good-through-menopauseThu, 24 Mar 2011 19:00:00 GMTWomenpause - Feeling good through menopauseThere are very few things that are a certainty in life other than death, but for women there is one other – they will all go through menopause in some form or other; in fact, there are over 37 million women in this country going through it right now! Joyce talks with Drs. Lovera Miller and David Miller, the authors of Womenopause, a book that women will treasure; it is packed with vital information and helpful hints to help women get through this natural transition with ease. 00:56:00Powerful Patientnomenopause,hormone replacement,womens health,menstruation,hysterectomyThere are very few things that are a certainty in life other than death, but for women there is one other – they will all go through menopause in some form or ohttps://www.blogtalkradio.com/powerful-patient/2011/03/17/fibroids-and-skin-bumps--what-do-they-have-in-commonHealthhttps://www.blogtalkradio.com/powerful-patient/2011/03/17/fibroids-and-skin-bumps--what-do-they-have-in-common/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/03/17/fibroids-and-skin-bumps--what-do-they-have-in-commonThu, 17 Mar 2011 19:00:00 GMTFibroids and skin bumps - what do they have in common?Many women experience fibroids in the uterus. In some cases, fibroids can be one signal of a set of issues called a "syndrome" that includes additional risks. Joyce speaks with Julie of the of the HLRCC Alliance about syndromes that include fibroids. 00:59:00Powerful Patientnofibroids,leiomyoma,kidney cancer,renal cell carcinoma,adrenal tumorMany women experience fibroids in the uterus. In some cases, fibroids can be one signal of a set of issues called a "syndrome" that includes additional risks.https://www.blogtalkradio.com/powerful-patient/2011/03/10/obesity-action-coalitionNutritionhttps://www.blogtalkradio.com/powerful-patient/2011/03/10/obesity-action-coalition/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/03/10/obesity-action-coalitionThu, 10 Mar 2011 20:00:00 GMTObesity Action CoalitionObesity is now in epidemic proportions in the United States, especially among children. From the National Institutes of Health to the Congress and the States, there is a great deal of action being taken to address this problem. Will it be helpful? What are the most promising actions that we can all take to help us trim down and maintain our health? James Zervios, Director of Communications for the Obesity Action Coalition joins Joyce to talk about their strategies. 00:57:00Powerful Patientnoobesity,children,nutrition,health,healthcareObesity is now in epidemic proportions in the United States, especially among children. From the National Institutes of Health to the Congress and the States,https://www.blogtalkradio.com/powerful-patient/2011/03/03/charting-a-new-course-after-tragedyHealthhttps://www.blogtalkradio.com/powerful-patient/2011/03/03/charting-a-new-course-after-tragedy/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/03/03/charting-a-new-course-after-tragedyThu, 03 Mar 2011 20:00:00 GMTCharting a New Course after TragedyChristine Whitehead knows all about second chances. When she was barely seven years old, her parents died five months apart of unrelated causes, she found herself at the center of a bitter custody battle between her maternal grandparents -- Hungarian immigrants who lived close by -- and her paternal aunts, whom she knew only slightly. After months in limbo, she was finally court ordered to the home of her aunts, where she found a loving home, even though her uncle had a secret drinking problem that plagued the household. Having lived through those life changes, she battled -- and beat -- anorexia on her way to law school. Today, she is a divorce attorney and author of the book Tell Me When It Hurts. “Although most divorce attorneys aren’t known for it, I really see myself as a specialist in helping people find their second chances in life,” Whitehead said. “I’m one of the few people who has actually seen a nasty custody battle from both sides -- first as a child, and now as an attorney and advocate for my clients. It’s never pretty, but if people work hard enough, both the parents and the children can each find second chances waiting for them at the end of the process.” Christine talks with Joyce about second chances, and will be taking calls from listeners.00:53:00Powerful Patientnodivorce,anorexia,tragedy,second chances,recoveryChristine Whitehead knows all about second chances. When she was barely seven years old, her parents died five months apart of unrelated causes, she found hersehttps://www.blogtalkradio.com/powerful-patient/2011/02/17/advice-for-caregiversCaregivinghttps://www.blogtalkradio.com/powerful-patient/2011/02/17/advice-for-caregivers/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/02/17/advice-for-caregiversThu, 17 Feb 2011 20:00:00 GMTAdvice for CaregiversViki Kind, a medical editor and hospice volunteer who specializes in medical ethics, talks with Joyce about her book, "A Caregiver's Guide to Compassionate decision-making." Each one of us is now, or will at some point in the future be making decisions for someone else, or may be needing that service. It is important for all of us to learn how to handle this important conversation. "I would like to teach others to respectfully understand that other people may not see the world as you do but you can find common ground which can connect you to one another. With such respect, it is easier to be understanding, kind and peaceful with each other. Don’t assume we are all alike. Instead, ask people how they would want to be shown respect or comfort and then treat others as they would want to be treated." Feel free to dial in and ask questions on the air.01:01:00Powerful Patientnobioethics,caregiving,hospice,end of life care,patient supportViki Kind, a medical editor and hospice volunteer who specializes in medical ethics, talks with Joyce about her book, "A Caregiver's Guide to Compassionate decihttps://www.blogtalkradio.com/powerful-patient/2011/02/10/eat-to-liveWeight Losshttps://www.blogtalkradio.com/powerful-patient/2011/02/10/eat-to-live/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/02/10/eat-to-liveThu, 10 Feb 2011 20:00:00 GMTEat to Live!Contrary to popular belief, you don't have to live the rest of your life in pain or on medication. Dr. Joel Fuhrman speaks with Joyce about how he uses nutriton to reverse disease, reduce high blood pressure, lose unwanted weight, lower your cholesterol levels, prevent heart disease and cancer, and improve your health - all without relying on drugs and fad diets. The importance of good nutrition is emphasized in Dr. Fuhrman's dietary program, Eat To Live.00:50:00Powerful Patientnoweight loss,nutrition,health foods,integrative medicine,heart healthContrary to popular belief, you don't have to live the rest of your life in pain or on medication. Dr. Joel Fuhrman speaks with Joyce about how he uses nutritonhttps://www.blogtalkradio.com/powerful-patient/2011/02/03/natural-ways-to-beat-the-fluHealthhttps://www.blogtalkradio.com/powerful-patient/2011/02/03/natural-ways-to-beat-the-flu/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/02/03/natural-ways-to-beat-the-fluThu, 03 Feb 2011 20:00:00 GMTNatural Ways to Beat the FluEach year, in America, it is estimated that 25-50 million cases of the flu are reported. It is an illness that can be life-threatening, with up 40,000 people dying from it each year. When it comes to the flu, your first line of defense is to work on prevention. Not only can nutritional supplements, herbal and homeopathic remedies help you avoid getting the flu, if you do get sick, they can help alleviate some of the problems associated with the flu. Joyce speaks with Dr. Gary Kaplan of the Kaplan Clinic for Integrative Medicine in McLean, Virgina, about prevention and care for avoiding or minimizing the impact of the flu.00:36:00Powerful Patientnoinfluenza,flu,natural medicine,prevention,healthcareEach year, in America, it is estimated that 25-50 million cases of the flu are reported. It is an illness that can be life-threatening, with up 40,000 people dyhttps://www.blogtalkradio.com/powerful-patient/2011/01/27/wellness-heart-brain-and-nervous-system-in-harmonyCaregivinghttps://www.blogtalkradio.com/powerful-patient/2011/01/27/wellness-heart-brain-and-nervous-system-in-harmony/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/01/27/wellness-heart-brain-and-nervous-system-in-harmonyThu, 27 Jan 2011 20:00:00 GMTWellness: heart, brain, and nervous system in harmonyDr. Deborah Rozman co-author of "Stopping Emotional Eating" and co-founder of HeartMath (www.heartmath.com), joins Joyce to talk about "heart coherence" -- a way of measuring the improving the way your heart, brain and nervous system work in harmony with each other. Come ask questions and learn about this new approach to the goal of wellness.00:40:00Powerful Patientnowellness,heart coherence,anger rage,stress management,anxietyDr. Deborah Rozman co-author of "Stopping Emotional Eating" and co-founder of HeartMath (www.heartmath.com), joins Joyce to talk about "heart coherence" -- a wahttps://www.blogtalkradio.com/powerful-patient/2011/01/26/inspire-youself--get-support-on-the-internetHealthhttps://www.blogtalkradio.com/powerful-patient/2011/01/26/inspire-youself--get-support-on-the-internet/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/01/26/inspire-youself--get-support-on-the-internetWed, 26 Jan 2011 19:30:00 GMTInspire youself - get support on the internetDanielle Leach, Director of Partnerships at Inspire.com, talks with Joyce about the importance of support -- speaking with someone else who has "been there, done that" -- especially when you are thrown into the unknown by a medical crisis. Come ask your questions!00:49:00Powerful Patientnopatient support,family support,rare diseases,online support,cancer supportDanielle Leach, Director of Partnerships at Inspire.com, talks with Joyce about the importance of support -- speaking with someone else who has "been there, donhttps://www.blogtalkradio.com/powerful-patient/2011/01/20/immune-therapyHealthhttps://www.blogtalkradio.com/powerful-patient/2011/01/20/immune-therapy/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/01/20/immune-therapyThu, 20 Jan 2011 20:00:00 GMTNew Antibody therapy to fight CancerRobert Brooke, CEO of Genesis Biopharma, talks with Joyce about their new antibody therapy, recently approved by the European Patent Office for use as a therapeutic treatment in multiple cancers. Genesis Biopharma is developing its anti-CD55 antibody therapy to neutralize a key cancer defense mechanism that has been found to be over-expressed in more than 80% of solid tumors. The therapy could provide a safe alternative to toxic chemotherapy regimens. The company is initially addressing metastatic colorectal cancer and lymphoma and will be setting up trials to determine its effectivness with other cancers as well. 01:00:00Powerful Patientnoantibody therapy,cancer treatment,immune therapy,colorectal cancer,LymphomaRobert Brooke, CEO of Genesis Biopharma, talks with Joyce about their new antibody therapy, recently approved by the European Patent Office for use as a therapehttps://www.blogtalkradio.com/powerful-patient/2011/01/13/listening-reflecting-healingHealthhttps://www.blogtalkradio.com/powerful-patient/2011/01/13/listening-reflecting-healing/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/01/13/listening-reflecting-healingThu, 13 Jan 2011 20:00:00 GMTListening Reflecting HealingYou have just received a diagnosis, and it lands like a bombshell. Genetic counselor Mary-Frances Garber speaks with Joyce about her private counseling practice, helping people come to terms with a diagnosis of a complex genetic disease and its implications for their own and their family's health. Ms. Garber tells us how to break the problem down into manageable chunks and begin to take charge. 00:31:00Powerful Patientnogenetic condition,diagnosis,coping with diagnosis,genetics and the family,counselingYou have just received a diagnosis, and it lands like a bombshell. Genetic counselor Mary-Frances Garber speaks with Joyce about her private counseling practichttps://www.blogtalkradio.com/powerful-patient/2011/01/05/the-secret-to-smarter-kidsHealthhttps://www.blogtalkradio.com/powerful-patient/2011/01/05/the-secret-to-smarter-kids/#commentshttp://www.blogtalkradio.com/powerful-patient/2011/01/05/the-secret-to-smarter-kidsWed, 05 Jan 2011 12:00:00 GMTThe Secret to Smarter KidsMusic education expert Sharon Burch talks with Joyce about the advantages of learning fundamental music concepts, introduced the Freddie the Frog Adventures. Freddie helps children understand the secret code of musical notation, causing the mind to think smarter. Music exercises the whole brain, making a student smarter.00:43:00Powerful Patientnomusic,music theory,music education,brain exercise,raising IQMusic education expert Sharon Burch talks with Joyce about the advantages of learning fundamental music concepts, introduced the Freddie the Frog Adventures. Fhttps://www.blogtalkradio.com/powerful-patient/2010/12/30/eat-right-and-thriveNutritionhttps://www.blogtalkradio.com/powerful-patient/2010/12/30/eat-right-and-thrive/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/12/30/eat-right-and-thriveThu, 30 Dec 2010 20:00:00 GMTEat Right and Thrive!Kevin Graham, author of Weight Loss Empowerment: 50 Ways to Lose Your Luggage, talks with Joyce about the best indicators of overall health and well-being. Kevin will raise your spirits and empower you to enjoy the holidays without guilt. He will reveal how to prepare for a holiday get-together, why it's good to feel hungry, and how to make fat people look skinny -- instantly!00:31:00Powerful Patientnonutrition,health,longevity,holiday eating,cuisineKevin Graham, author of Weight Loss Empowerment: 50 Ways to Lose Your Luggage, talks with Joyce about the best indicators of overall health and well-being. Kevhttps://www.blogtalkradio.com/powerful-patient/2010/12/23/stay-away-from-this-on-the-holidays-hint-it-isnt-alcoholHealthhttps://www.blogtalkradio.com/powerful-patient/2010/12/23/stay-away-from-this-on-the-holidays-hint-it-isnt-alcohol/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/12/23/stay-away-from-this-on-the-holidays-hint-it-isnt-alcoholThu, 23 Dec 2010 20:00:00 GMTStay Away from this on the Holidays (Hint: it isn't Alcohol!)Sheryl Kurland is a patient advocate and co-owner of Orlando Patient Advocates (Florida). As an independent patient advocate, she provides a range of services, from identifying the right doctors and conducting resarch on treatment to arranging for medical services and overseeing care for hospitalized patients. Her research shows clearly that a hospital or emergency room is not a good place to celebrate the holidays. She offers six "magic words" to protect yourself during times when hospital staffing is at it lowest and patient counts are high. Be sure to avoid the "patient pothole"!00:35:00Powerful Patientnoemergency medicine,holidays,nursing care,hospitalization,medical mistakesSheryl Kurland is a patient advocate and co-owner of Orlando Patient Advocates (Florida). As an independent patient advocate, she provides a range of services,https://www.blogtalkradio.com/powerful-patient/2010/12/09/laugh-yourself-thinHealthhttps://www.blogtalkradio.com/powerful-patient/2010/12/09/laugh-yourself-thin/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/12/09/laugh-yourself-thinThu, 09 Dec 2010 20:00:00 GMTLaugh Yourself ThinFor Melanie Rotenberg, M.D., humor has been a life preserver while riding the rough seas of nursing home and hospice work. She started in the field as a 15-year-old CNA, earning $2.65 an hour. “It helped pay for college,” she said. Now a physician with a speciality in physical medicine and rehabilitation, she still works predominantly with people in nursing homes and hospice. The subject of a good diet is dear to Rotenberg’s heart, for in her medical practice she daily faces the ravages of obesity. “I deal with severely disabled patients suffering from major strokes, severe heart disease and diabetes, and I realized that people need good behavioral education to help prevent them from becoming disabled,” she said. “Younger and younger people are becoming disabled because of obesity.” “Laugh Yourself Thin” is only the beginning of Rotenberg’s writing career. “I’m planning on a whole series of “Laugh Yourself” books,” she explained. Next on Rotenberg’s agenda is a book about another mind-grasping subject: sex. “It will be directed at women, with real medical information presented in a funny manner,” said Rotenberg. Join with Joyce as she speaks with Dr. Rotenberg about the role of humor in keeping you happy, thin, and well.01:00:00Powerful Patientnolaughter,humor,health,obesity,disabilityFor Melanie Rotenberg, M.D., humor has been a life preserver while riding the rough seas of nursing home and hospice work. She started in the field as a 15-yearhttps://www.blogtalkradio.com/powerful-patient/2010/12/02/the-art-of-civil-discussionHealthhttps://www.blogtalkradio.com/powerful-patient/2010/12/02/the-art-of-civil-discussion/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/12/02/the-art-of-civil-discussionThu, 02 Dec 2010 20:00:00 GMTThe Art of Civil DiscussionWhy is it that there seems to be such polarized discussion in politics these days? What is changing about us that we seem to have lost the ability to disagree in a civil manner and discuss? According to Charles Glassman,MD, our uncivil behavior stems from the way our brains operate. Our ingrained survival instincts are eing tested as the issues of the day become overwhelmingly stressful, and the fear of the future is causing our natural "fight or flight" response to kick in. Come learn some tools for being compassionate listeners, and develop an optimistic attitude by modifying our reactions to stress. Dr. Glassman offers five was to tame our impulses and control our knee-jerk reactions.01:01:00Powerful Patientnostress,fight or flight,impulse control,civil discussion,stress managementWhy is it that there seems to be such polarized discussion in politics these days? What is changing about us that we seem to have lost the ability to disagreehttps://www.blogtalkradio.com/powerful-patient/2010/11/18/help-your-own-immune-system-to-treat-and-beat-cancerHealthhttps://www.blogtalkradio.com/powerful-patient/2010/11/18/help-your-own-immune-system-to-treat-and-beat-cancer/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/11/18/help-your-own-immune-system-to-treat-and-beat-cancerThu, 18 Nov 2010 20:00:00 GMTHelp your own Immune System to Treat and Beat CancerWhen Carolyn Gross was diagnosed with stage three breast cancer she was offered the same treatmet boh her grandmothers had received thirty years earlier: mastectomy with chemotherapy and radiation. After doing careful research, Carolyn decided to try an innovative immune therapy. Now cancer-free for seven ears, Carolyn is passionate about informing people about the power of their own immune systems, and how to maximize the power within yourself. She now works as a patient advocate and holistic health coach.00:57:00Powerful Patientnocancer,immune system,immunotherapy,controlling cancer,holistic healthWhen Carolyn Gross was diagnosed with stage three breast cancer she was offered the same treatmet boh her grandmothers had received thirty years earlier: mastechttps://www.blogtalkradio.com/powerful-patient/2010/11/04/menopause-and-pcos--talking-about-womens-healthHealthhttps://www.blogtalkradio.com/powerful-patient/2010/11/04/menopause-and-pcos--talking-about-womens-health/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/11/04/menopause-and-pcos--talking-about-womens-healthThu, 04 Nov 2010 19:00:00 GMTMenopause and PCOS - Talking about Women's HealthKaren Roush, RN, MSN, FNP, BC, has been a nurse specializing in women's issues for over 25 years. Karen joins Joyce today for a discussion of women's health issues that women often find too embarrassing to raise with their doctors. Please join us to talk about her two books on polycystic ovary syndrome and on menopause.01:00:00Powerful PatientnoPCOS,poycystic ovary syndrome,menopause,womens health,healthcareKaren Roush, RN, MSN, FNP, BC, has been a nurse specializing in women's issues for over 25 years. Karen joins Joyce today for a discussion of women's health ishttps://www.blogtalkradio.com/powerful-patient/2010/10/28/diagnosing-vhl-in-brazilHealthhttps://www.blogtalkradio.com/powerful-patient/2010/10/28/diagnosing-vhl-in-brazil/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/10/28/diagnosing-vhl-in-brazilThu, 28 Oct 2010 19:00:00 GMTDiagnosing VHL in BrazilJoyce is just back from the 9th International Medical Symposium on VHL in Rio de Janeiro. One day of basic science, one day devoted to optimal treatments for the various kind of VHL tumors, and one day designed specifically for the families. We had 40 people from all over Brazil, and representatives from the patient organizations in four European countries, US, and Argentina. What has this meeting accomplished? Why is it important to get an accurate diagnosis of a rare disease like VHL? Why do we need to convene people worldwide in order to make progress in understanding and treating rare diseases?01:00:00Powerful Patientnorare diseases,von Hippel-Lindau,diagnosis,family support,training doctorsJoyce is just back from the 9th International Medical Symposium on VHL in Rio de Janeiro. One day of basic science, one day devoted to optimal treatments for thttps://www.blogtalkradio.com/powerful-patient/2010/10/07/pets-have-healing-powersCaregivinghttps://www.blogtalkradio.com/powerful-patient/2010/10/07/pets-have-healing-powers/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/10/07/pets-have-healing-powersThu, 07 Oct 2010 19:00:00 GMTPets Have Healing Powers Every day, the presence of your own dog exerts a healng influence over you -- and you are not even aware of it. Sharon Sakson, author of PAWS & EFFECT: The Healing Power of Dogs, has tracked down scientific research that proves there are at least five ways the pet by your side is healing to you. Dogs can sniff out low blood sugar levels in diabetics, help autistic children, sense when a seizure is coming on, and provide natural, holistic relief for those living with mental and physical illness. Sharon will share which canine breeds have the strongest healing abilities. "You may listen more closely the next time your dog tries to tell you something," says Betty White, actress and author. Come chat with Sharon and Joyce about dogs.01:00:00Powerful Patientnodogs,mental health,diabetes,seizures,cancerEvery day, the presence of your own dog exerts a healng influence over you -- and you are not even aware of it. Sharon Sakson, author of PAWS & EFFECT: The Heahttps://www.blogtalkradio.com/powerful-patient/2010/09/30/how-to-be-sickHealthhttps://www.blogtalkradio.com/powerful-patient/2010/09/30/how-to-be-sick/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/09/30/how-to-be-sickThu, 30 Sep 2010 19:00:00 GMTHow to be Sick - making peace with chronic illnessEach day of our lives is spent finding new ways to be well. So what are we supposed to do when, overnight, we find our lives have changed and we are told we may never be well again? When doctors can’t tell us, “You’re going to be ok.” How do we deal with this scenario …when no one ever taught us ‘how to be sick?’ In 2001, Toni Bernhard, a lawyer, professor, wife and mother, was living a busy and fulfilling life until, while on a short, romantic trip to Paris, she contracted a viral infection from which she has yet to recover. After living in despair for much of the first 5-6 years of her illness, Bernhard began to focus on how to live gracefully and purposefully despite her new limitations. Joyce talks with Toni about how she learned to live with chronic illness. 01:00:00Powerful Patientnochronic illness,healthcare,coping with illness,meditation,finding peaceEach day of our lives is spent finding new ways to be well. So what are we supposed to do when, overnight, we find our lives have changed and we are told we mayhttps://www.blogtalkradio.com/powerful-patient/2010/09/23/having-surgery-in-brazil--medical-tourismHealthhttps://www.blogtalkradio.com/powerful-patient/2010/09/23/having-surgery-in-brazil--medical-tourism/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/09/23/having-surgery-in-brazil--medical-tourismThu, 23 Sep 2010 19:00:00 GMTHaving surgery in Brazil -- Medical TourismJoyce speaks with Alex Lifshitz of Sphera International, one of the many companies specializing in "medical tourism." Medical travel has become a growing trend in the healthcare industry. Patients all over America choose to travel abroad for surgeries and procedures as an effective way to get safe low-cost/high-quality care. Already a hotspot for plastic surgery, Brazil is known for its beautiful tranquil beaches, fabulous shopping, and rich culture. Alex and Joyce will discuss the advantages and disadvantages of having surgery outside the United States. 01:00:00Powerful Patientnomedical tourism,medical travel,healthcare,surgery,cost of healthcareJoyce speaks with Alex Lifshitz of Sphera International, one of the many companies specializing in "medical tourism." Medical travel has become a growing trendhttps://www.blogtalkradio.com/powerful-patient/2010/09/16/demystifying-shock-therapy-for-depressionHealthhttps://www.blogtalkradio.com/powerful-patient/2010/09/16/demystifying-shock-therapy-for-depression/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/09/16/demystifying-shock-therapy-for-depressionThu, 16 Sep 2010 19:00:00 GMTDeMystifying Shock Therapy for DepressionCarol Kivler has battled depression for decades. Over the past 20 years se has had over 50 successful ECT treatments during my four major bouts with clinical depression. ECT has become my “ladder out of the depression pit” for which I am most grateful. ECT, or electroconvulsive therapy, is commonly known as "shock therapy." Carol shares with Joyce her success with Electric Convulsive Therapy, and encourages others to consider this modality as a way of getting out of deep depression.01:01:00Powerful Patientnodepression,shock therapy,ECT,electroconvulsive therapy,antidepressiveCarol Kivler has battled depression for decades. Over the past 20 years se has had over 50 successful ECT treatments during my four major bouts with clinical dhttps://www.blogtalkradio.com/powerful-patient/2010/09/09/rodeo-in-juliet--a-saga-of-survival-against-all-oddsHealthhttps://www.blogtalkradio.com/powerful-patient/2010/09/09/rodeo-in-juliet--a-saga-of-survival-against-all-odds/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/09/09/rodeo-in-juliet--a-saga-of-survival-against-all-oddsThu, 09 Sep 2010 19:00:00 GMTRodeo in Juliet - a saga of survival against all oddsGlenn Rockowitz has laughed at the face of death four times. He's still counting. This remarkable man's book, Rodeo in Juliet describes his survival of cancer against all odds and his ultimate achievement of personal happiness in the face of the most dire personal ordeals imaginable. Glenn shares with Joyce his powerful perspective on the value of life. 01:00:00Powerful Patientnohappiness,survival,cancer,faith,spiritual healingGlenn Rockowitz has laughed at the face of death four times. He's still counting. This remarkable man's book, Rodeo in Juliet describes his survival of cancer ahttps://www.blogtalkradio.com/powerful-patient/2010/09/02/efficient-storing-and-sharing-of-imaging-scansHealthhttps://www.blogtalkradio.com/powerful-patient/2010/09/02/efficient-storing-and-sharing-of-imaging-scans/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/09/02/efficient-storing-and-sharing-of-imaging-scansThu, 02 Sep 2010 19:00:00 GMTEfficient storing and sharing of imaging scansHave you ever had to get a copy of your scans to send to another doctor for a second opinion? Sometimes the second doctor simply asks for another set of expensive scans because it's too much bother to get the existing ones. Joyce talks with Amy Vreeland of LifeIMAGE about their new product that aims to avoid duplicate exams and eliminate unnecessary patient exposure to excessive radiation. This is important news as duplicate scanning of patients can also lead to patient discomfort and higher health care costs. Already adopted by three large cancer centers, this kind of "cloud computing" product has benefit for patients and for the bottom line.00:52:00Powerful Patientnoimaging,healthcare,cost reduction,patient comfort,radiation exposureHave you ever had to get a copy of your scans to send to another doctor for a second opinion? Sometimes the second doctor simply asks for another set of expensihttps://www.blogtalkradio.com/powerful-patient/2010/08/26/my-dog-has-fallen-and-he-cant-get-upHealthhttps://www.blogtalkradio.com/powerful-patient/2010/08/26/my-dog-has-fallen-and-he-cant-get-up/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/08/26/my-dog-has-fallen-and-he-cant-get-upThu, 26 Aug 2010 19:00:00 GMTMy Dog Has Fallen and he Can't Get Up!Joyce talks with Judy Wolff about her dog Tucker, a laborador retriever, who was paralyzed by a fibrocartilaginous embolism (FCE). With care and patience, Tucker has made a remarkable recovery. Judy shares their experiences, some day-to-day logistical suggestions, in the hope that others may give their dogs a chance to recover. Tucker's story is not only inspirational to other dogs, but also to us humans.00:55:00Powerful Patientnospinal cord injury,fibrocartilaginous embolism,paralysis,rehabilitation,paraplegiaJoyce talks with Judy Wolff about her dog Tucker, a laborador retriever, who was paralyzed by a fibrocartilaginous embolism (FCE). With care and patience, Tuckhttps://www.blogtalkradio.com/powerful-patient/2010/08/19/poor-sleep-caused-by-pain-and-dry-mouthHealthhttps://www.blogtalkradio.com/powerful-patient/2010/08/19/poor-sleep-caused-by-pain-and-dry-mouth/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/08/19/poor-sleep-caused-by-pain-and-dry-mouthThu, 19 Aug 2010 19:00:00 GMTSleep disturbance and cancer treatmentSleep disturbances are a common complaint in head and neck cancer patients and have been shown to decrease quality of life. A recent University of Michigan Comprehensive Cancer Center study shows that this may be due to increased symptoms of pain and dry mouth related to radiation treatments. Reducing these factors could be warranted to improve sleep hygiene and essentially enhance quality of life. Joyce talks with the study author, Dr. Sonia Duffy, Ph.D., R.N., professor of nursing at the U-M School of Nursing and otolaryngology. 00:14:00Powerful Patientnocancer treatment,head and neck cancer,radiation therapy,insomnia,sleep deprivationSleep disturbances are a common complaint in head and neck cancer patients and have been shown to decrease quality of life. A recent University of Michigan Comphttps://www.blogtalkradio.com/powerful-patient/2010/08/12/health-care-in-world-citiesHealthhttps://www.blogtalkradio.com/powerful-patient/2010/08/12/health-care-in-world-cities/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/08/12/health-care-in-world-citiesThu, 12 Aug 2010 19:00:00 GMTHealth Care in World CitiesMichael Gusmano, Ph.D., a research scientist from the Hastings Center, discusses with Joyce his new book on Health Care in World Cities. The Hastings Center is a nonpartisan research institution dedicated to bioethics and the internet. 01:00:00Powerful Patientnohealthcare reform,paying for healthcare,medical care,access to healthcare,insuranceMichael Gusmano, Ph.D., a research scientist from the Hastings Center, discusses with Joyce his new book on Health Care in World Cities. The Hastings Center ishttps://www.blogtalkradio.com/powerful-patient/2010/08/05/struggling-to-get-a-diagnosisHealthhttps://www.blogtalkradio.com/powerful-patient/2010/08/05/struggling-to-get-a-diagnosis/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/08/05/struggling-to-get-a-diagnosisThu, 05 Aug 2010 19:00:00 GMTStruggling to get a diagnosisAfter 50 years of good health, Wendy Scheinfeld has been struggling for four and a half years to get a diagnosis of what may have caused swollen red and oozing skin all over her body. She has been to nearly 30 specialists in a wide variety of fields, none of whom has been able to come up with a name and a recommendation for treatment for the ongoing allergic and immune system issues that have plagued her since the initial episode. Perhaps you can help her? or find some glimmers of hope in her situation that might help you.00:56:00Powerful Patientnodiagnosis,allergies,immune system,stress,toxicityAfter 50 years of good health, Wendy Scheinfeld has been struggling for four and a half years to get a diagnosis of what may have caused swollen red and oozinghttps://www.blogtalkradio.com/powerful-patient/2010/07/29/got-sress--hear-about-the-15-minute-heart-cureHealthhttps://www.blogtalkradio.com/powerful-patient/2010/07/29/got-sress--hear-about-the-15-minute-heart-cure/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/07/29/got-sress--hear-about-the-15-minute-heart-cureThu, 29 Jul 2010 19:00:00 GMTGot Stress? - hear about the 15 minute Heart Cure Even if you eat wisely and exercise often, you and other stress junkies are at HUGE risk for illnesses like heart disease, cancer and stroke. Help save yourself and your ticker by listening to acclaimed heart specialist John M. Kennedy, MD. Move beyond a stressful lifestyle with his minutes-a-day BREATHE technique that eliminates anxiety anywhere, anytime, embracing a sense of calm and focus in any workplace or homelife.01:00:00Powerful Patientnoheart health,stress management,breathe out stress,heart disease,cancerEven if you eat wisely and exercise often, you and other stress junkies are at HUGE risk for illnesses like heart disease, cancer and stroke. Help save yourselhttps://www.blogtalkradio.com/powerful-patient/2010/07/15/what-does-the-new-health-care-law-mean-to-youHealthhttps://www.blogtalkradio.com/powerful-patient/2010/07/15/what-does-the-new-health-care-law-mean-to-you/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/07/15/what-does-the-new-health-care-law-mean-to-youThu, 15 Jul 2010 19:00:00 GMTWhat does the new Health-Care Law Mean to You?Brenda Gleason, M.A., M.P.H. is the president and founder of M2 Health Care Consulting, a strategic policy and communications firm and a professor at the George Washington University School of Public Health. Her latest book, 8 Things we can Do to Fix the System, gives practical solutions any of us -- sick or healthy, rich or poor, insured or not -- could start doing today.01:01:00Powerful Patientnoinsurance,Healthcare reform,healthy living,self-care,alternative careBrenda Gleason, M.A., M.P.H. is the president and founder of M2 Health Care Consulting, a strategic policy and communications firm and a professor at the Georgehttps://www.blogtalkradio.com/powerful-patient/2010/07/08/for-rape-victims-its-still-like-the-old-westHealthhttps://www.blogtalkradio.com/powerful-patient/2010/07/08/for-rape-victims-its-still-like-the-old-west/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/07/08/for-rape-victims-its-still-like-the-old-westThu, 08 Jul 2010 19:00:00 GMTFor Rape Victims, it's still like the Old WestNancy Williams, a veteran staffer of a women’s crisis center, has written a novel about a survivor of rape in the Old West. "According to the U.S. Justice Department, more than 20 percent of all women today report they’ve been sexually assaulted at least once in their lives, while only one in 10 rapes is ever actually reported to law enforcement.” Nancy talks with Joyce about the difficulties in reporting and prosecuting rape today, and the cost to the survivor of pursuing or not pursuing the case. 01:00:00Powerful Patientnorape,sexual assault,date rape,incest,low self-imageNancy Williams, a veteran staffer of a women’s crisis center, has written a novel about a survivor of rape in the Old West. "According to the U.S. Justice Depahttps://www.blogtalkradio.com/powerful-patient/2010/07/01/the-miracle-of-true-loveHealthhttps://www.blogtalkradio.com/powerful-patient/2010/07/01/the-miracle-of-true-love/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/07/01/the-miracle-of-true-loveThu, 01 Jul 2010 19:00:00 GMTthe Miracle of True LoveAimee Salas from the island of Curacao in the Dutch Carinnean has written a book about her life-changing experience when diagnosed with von Hippel-Lindau disease. On an island with a total population of 150,000 she found herself with a diagnosis of a rare disease, needing a surgery that was not possible on her island. But with faith and the help of family and friends she found the medical help she needed, survived the surgery, and maintains her faith and her optimism. 01:01:00Powerful Patientnochristian healing,von HIppel-Lindau,VHL,rare disease,healthcareAimee Salas from the island of Curacao in the Dutch Carinnean has written a book about her life-changing experience when diagnosed with von Hippel-Lindau diseashttps://www.blogtalkradio.com/powerful-patient/2010/06/24/solve-chronic-paul-problems-quickly--even-on-the-aCaregivinghttps://www.blogtalkradio.com/powerful-patient/2010/06/24/solve-chronic-paul-problems-quickly--even-on-the-a/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/06/24/solve-chronic-paul-problems-quickly--even-on-the-aThu, 24 Jun 2010 19:00:00 GMTSolve Chronic Pain Problems Quickly - Even on the Air!Chronic pain can become debilitating. Specialists may have checked your bones, nerves, blood vessels, discs or arthritis and found nothing, but pain may be stored in the muscles, triggering distant parts of the body. Tasso Spanos, a Certified Myofascial Trigger Point Therapist , will talk with Joyce about pain. He is willing to take calls on the air to see if he can resolve your chronic pain through targeted exercise and stretching.01:01:00Powerful Patientnopain,myofascial trigger point therapy,health,chronic pain,neuropathic painChronic pain can become debilitating. Specialists may have checked your bones, nerves, blood vessels, discs or arthritis and found nothing, but pain may be stohttps://www.blogtalkradio.com/powerful-patient/2010/06/17/allergies-and-the-immune-systemNutritionhttps://www.blogtalkradio.com/powerful-patient/2010/06/17/allergies-and-the-immune-system/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/06/17/allergies-and-the-immune-systemThu, 17 Jun 2010 19:00:00 GMTIs "Clean Living" to blame for Allergies?The National Institutes of Health report that 50% of Americans are sensitive to at least one allergen, which is more than twice the rate reported in years past. Is “clean living” to blame? Is Americans’ incessant use of anti-bacterial cleansers, air-tight seals around doors and windows and pet-free homes actually weakening our immune systems and causing an epidemic increase in allergies and asthma? Immune health researcher Stuart Reeves, Ph.D., discusses the “Hygiene Hypothesis,” the theory that sterile environments fail to challenge the immune system. “Unwittingly, Americans’ too-clean behaviors hamper the immune system from educating itself on the appropriate responses to environmental factors such as dirt and microorganisms,” says Dr. Reeves.01:00:00Powerful Patientnoallergies,immune system,lupus,rheumatoid arthritis,nutritionThe National Institutes of Health report that 50% of Americans are sensitive to at least one allergen, which is more than twice the rate reported in years past.https://www.blogtalkradio.com/powerful-patient/2010/06/10/cogntiv-therapy-for-brain-rehabilitationHealthhttps://www.blogtalkradio.com/powerful-patient/2010/06/10/cogntiv-therapy-for-brain-rehabilitation/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/06/10/cogntiv-therapy-for-brain-rehabilitationThu, 10 Jun 2010 19:00:00 GMTCognitive Therapy for Brain RehabilitationPeter Magaro, PhD, cognitive psychologist and director of the Alzheimer’s Treatment and Memory Training Centers of America (ATMTC), the leading provider of professional memory training services in assisted living communities, speaks with Joyce about cognitive therapy for brain rehabilitation. ATMTC has launched a new Memory Treatment Program on HAPPYneuron's Scientific Brain Training PRO online platform. The program is designed for use by cognitive therapy professionals to effectively deliver and manage the Memory Treatment Program for patients in need of treatment for Mild Cognitive Impairment and Early Stage Alzheimer’s. 01:00:00Powerful Patientnobrain,memory,Alzheimer,brain rehabilitation,cognitive therapyPeter Magaro, PhD, cognitive psychologist and director of the Alzheimer’s Treatment and Memory Training Centers of America (ATMTC), the leading provider of profhttps://www.blogtalkradio.com/powerful-patient/2010/06/03/hope-for-women-with-recurrent-miscarriageHealthhttps://www.blogtalkradio.com/powerful-patient/2010/06/03/hope-for-women-with-recurrent-miscarriage/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/06/03/hope-for-women-with-recurrent-miscarriageThu, 03 Jun 2010 19:00:00 GMTHope for women with Recurrent MiscarriageRecurrent miscarriage is often a “silent epidemic” among women leading to depression and other issues. While there are many false misconceptions regarding pregnancy loss, recurrent miscarriage often is an indication of a chromosomal problem. There is hope for women with a new chromosomal testing called Comparative Genomic Hybridization (CGH). While there have been various different types of genetic testing available through infertility clinics to-date, researchers have been looking for screening methods that offer greater ability to determine the implantation potential for a single embryo. Early data suggests that CGH may be what we have been looking for as embryo implantation rates of up to 66% have been reported with this new testing. Dr. Carolyn Kaplan of the Georgia Reproductive Specialists speaks with Joyce about the problem of recurrent miscarriage and the technology of CGH. 01:00:00Powerful Patientnopregnancy,miscarriage,genetic testing,CGH,chromosomal damageRecurrent miscarriage is often a “silent epidemic” among women leading to depression and other issues. While there are many false misconceptions regarding preghttps://www.blogtalkradio.com/powerful-patient/2010/05/27/competitive-surfer-jesse-billauer-regains-quality-of-lifeHealthhttps://www.blogtalkradio.com/powerful-patient/2010/05/27/competitive-surfer-jesse-billauer-regains-quality-of-life/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/05/27/competitive-surfer-jesse-billauer-regains-quality-of-lifeThu, 27 May 2010 19:00:00 GMTCompetitive Surfer Jesse Billauer regains quality of lifeAt 17 years of age, Jesse Billauer's life was forever changed when a spinal cord injury resulted in quadriplegia. For Jesse, a star athlete and competitive surfer, this life-changing event became a calling to inspire others to overcome their own obstacles and lead healthy, active lives. Jesse shares the philosophy that has gotten him back in action, and some of the aids that have improved his quality of life.01:00:00Powerful Patientnospinal cord injury,paraplegia,wheelchair athlete,catheter,infectionAt 17 years of age, Jesse Billauer's life was forever changed when a spinal cord injury resulted in quadriplegia. For Jesse, a star athlete and competitive surhttps://www.blogtalkradio.com/powerful-patient/2010/05/20/surviving-surgeyHealthhttps://www.blogtalkradio.com/powerful-patient/2010/05/20/surviving-surgey/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/05/20/surviving-surgeyThu, 20 May 2010 21:00:00 GMTSurviving SurgeyDr. Barry Friedberg is an anesthesiologist who wants to lower the incidence of side effects from anesthesia. "A lot of people wake up from surgery not quite the same person they were before they went under because of the overuse of anesthetic drugs," said Dr. Friedberg, a board certified anesthesiologist who has been quoted in numerous medical journals and anesthesia textbooks. He suggests, for example, that patients ask their anesthesiologists to use a brain monitor during surgery. He also lectures to anesthesiologists and surgeons on safer, simpler, cost-effective techniques for better patient outcomes. Dr. Friedberg talks with us about ways that the patient can help reduce the dangers of surgery. Bring your questions for this expert on anesthesia. 01:00:00Powerful Patientnoanesthesia,surgery,medical errors,over-use of drugs,healthcareDr. Barry Friedberg is an anesthesiologist who wants to lower the incidence of side effects from anesthesia. "A lot of people wake up from surgery not quite thehttps://www.blogtalkradio.com/powerful-patient/2010/05/13/srviving-surgeryHealthhttps://www.blogtalkradio.com/powerful-patient/2010/05/13/srviving-surgery/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/05/13/srviving-surgeryThu, 13 May 2010 19:00:00 GMTSurviving SurgeryRESCHEDULED - SEE 5/20, 5 PM EASTERN TIME Dr. Barry Friedberg is an anesthesiologist who wants to lower the incidence of side effects from anesthesia. He was called into surgery on the originally scheduled date. We have rescheduled for 5/20. This segment is Joyce's introduction to the subject.01:00:00Powerful Patientnoanesthesia,surgery,medical errors,over-use of drugs,healthcareRESCHEDULED - SEE 5/20, 5 PM EASTERN TIME Dr. Barry Friedberg is an anesthesiologist who wants to lower the incidence of side effects from anesthesia. He washttps://www.blogtalkradio.com/powerful-patient/2010/05/06/am-i-hungryHealthhttps://www.blogtalkradio.com/powerful-patient/2010/05/06/am-i-hungry/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/05/06/am-i-hungryThu, 06 May 2010 19:00:00 GMTAm I Hungry?Dr. Michelle May talks with Joyce about the approach to Mindful Eating presented in her book, "Eat What You Love, Love What You Eat: How to Break Your Eat-Repent-Repeat Cycle" Her motto: "Eat Mindfully, Live Vibrantly!"01:00:00Powerful Patientnoeating,mindful eating,weight management,weight control,healthDr. Michelle May talks with Joyce about the approach to Mindful Eating presented in her book, "Eat What You Love, Love What You Eat: How to Break Your Eat-Repenhttps://www.blogtalkradio.com/powerful-patient/2010/04/29/tennis-star-cliff-richey-on-acing-depressionHealthhttps://www.blogtalkradio.com/powerful-patient/2010/04/29/tennis-star-cliff-richey-on-acing-depression/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/04/29/tennis-star-cliff-richey-on-acing-depressionThu, 29 Apr 2010 19:00:00 GMTTennis Star Cliff Richey on Acing DepressionIn 1970 Cliff Richey was at the top of his tennis game. And then he met his toughest match: depression. Cliff talks with Joyce about his new book, and about how he has learned to live with depression.01:00:00Powerful Patientnosports,depression,tennis,mental illness,dyslexiaIn 1970 Cliff Richey was at the top of his tennis game. And then he met his toughest match: depression. Cliff talks with Joyce about his new book, and about hhttps://www.blogtalkradio.com/powerful-patient/2010/04/28/mental-health-naturallyHealthhttps://www.blogtalkradio.com/powerful-patient/2010/04/28/mental-health-naturally/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/04/28/mental-health-naturallyWed, 28 Apr 2010 14:00:00 GMTMental Health NaturallyDr. Kathi Kemper speaks with Joyce about techniques to support mental health naturally. Dr. Kemper, a nationally renowned pediatrician and director of the Center for Integrative Medicine at Wake Forest University Baptist Medical Center in North Carolina. Her research shows the value of using non-pharmaceutical approaches first to attain optimal mental and physical health.01:00:00Powerful Patientnomental health,depression,suicide,suicide prevention,ADHDDr. Kathi Kemper speaks with Joyce about techniques to support mental health naturally. Dr. Kemper, a nationally renowned pediatrician and director of the Centhttps://www.blogtalkradio.com/powerful-patient/2010/04/08/do-we-have-what-it-takes-to-take-care-of-aging-booHealthhttps://www.blogtalkradio.com/powerful-patient/2010/04/08/do-we-have-what-it-takes-to-take-care-of-aging-boo/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/04/08/do-we-have-what-it-takes-to-take-care-of-aging-booThu, 08 Apr 2010 19:00:00 GMTDo we Have what it takes to take care of aging boomers?Mary Rita Hurley, RN, Aging Initiatives Director of STTI, the Honor Society of Nursing, talks with Joyce about the needs of our aging population, and what we need to add to the nation's healthcare services in order to meet their needs. 01:00:00Powerful Patientnogerontology,baby boomers,healthcare,aging parents,pain managementMary Rita Hurley, RN, Aging Initiatives Director of STTI, the Honor Society of Nursing, talks with Joyce about the needs of our aging population, and what we nehttps://www.blogtalkradio.com/powerful-patient/2010/03/04/protection-from-radiation-imagingHealthhttps://www.blogtalkradio.com/powerful-patient/2010/03/04/protection-from-radiation-imaging/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/03/04/protection-from-radiation-imagingThu, 04 Mar 2010 20:00:00 GMTProtection from Radiation ImagingMichael Fonstein of Cleveland Biolabs talks with Joyce about a new drug that protects humans from the effects of radiation. The United States and other countries have been investing in this technology primarily for defense purposes, but medically it can also serve to assist in reducing the harmful effects of radiation from diagnostic and therapeutic imaging. Dr. Fonstein is the former director of the DNA sequencing center at the University of Chicago.01:00:00Powerful Patientnomedical imaging,CT,radiation,radiation poisoning,diagnosisMichael Fonstein of Cleveland Biolabs talks with Joyce about a new drug that protects humans from the effects of radiation. The United States and other countrihttps://www.blogtalkradio.com/powerful-patient/2010/02/25/families-using-laughter-to-defuse-stressHealthhttps://www.blogtalkradio.com/powerful-patient/2010/02/25/families-using-laughter-to-defuse-stress/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/02/25/families-using-laughter-to-defuse-stressThu, 25 Feb 2010 20:00:00 GMTFamilies using Laughter to defuse stressLaugh with Joyce and Hillary Gokey as Hillary shares glimpses of her new book about how her family uses laughter to defuse stress.01:00:00Powerful Patientnofamilies,laughter,stress,stress management,happinessLaugh with Joyce and Hillary Gokey as Hillary shares glimpses of her new book about how her family uses laughter to defuse stress.https://www.blogtalkradio.com/powerful-patient/2010/02/18/raw-foods-for-healing-and-healthHealthhttps://www.blogtalkradio.com/powerful-patient/2010/02/18/raw-foods-for-healing-and-health/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/02/18/raw-foods-for-healing-and-healthThu, 18 Feb 2010 20:00:00 GMTRaw Foods for Healing and HealthThe authors of The Healing Patch Cookbook, who operate an online seed store and blog of the same name (www.rawhealingpatch.com), understand those concerns. They’ve made that difficult transition themselves, coming from totally different directions. Julie Hoffenberg got hooked on the raw vegetarian lifestyle after working seven years in the natural health field. Sarah Woodward’s switch in diet was made under more dire circumstances: She has survived a bout of ovarian cancer. 01:00:00Powerful Patientnoweight control,raw foods,health food,cancer prevention,cancer cureThe authors of The Healing Patch Cookbook, who operate an online seed store and blog of the same name (www.rawhealingpatch.com), understand those concerns. Theyhttps://www.blogtalkradio.com/powerful-patient/2010/02/11/growing-up-with-a-handicapHealthhttps://www.blogtalkradio.com/powerful-patient/2010/02/11/growing-up-with-a-handicap/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/02/11/growing-up-with-a-handicapThu, 11 Feb 2010 20:00:00 GMTGrowing Up with a HandicapGrowing up with a handicap can be challenging. Everyday things often become overwhelming tasks. Beyod the handicap itself, disabled children have to deal with isses like bullying, being misunderstood, and lack of opportunities to grow. Having been born with cerebral palsy, Sarah Rees Howell knows firsthand about living with a disability. Struggling to fit in and find her own voice. Sarah found an unlikely ally in her horse, Ringo. He gave Sarah confidence and helped her learn to help herself and ultimately others. Sarah is a bridge and voice for disabled kids everywhere.01:00:00Powerful Patientnochildren,disability,disabled children,handicap,bullyingGrowing up with a handicap can be challenging. Everyday things often become overwhelming tasks. Beyod the handicap itself, disabled children have to deal withhttps://www.blogtalkradio.com/powerful-patient/2010/02/04/how-the-biggest-loser-makes-millions-of-heavy-peopWeight Losshttps://www.blogtalkradio.com/powerful-patient/2010/02/04/how-the-biggest-loser-makes-millions-of-heavy-peop/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/02/04/how-the-biggest-loser-makes-millions-of-heavy-peopThu, 04 Feb 2010 20:00:00 GMTHow the Biggest Loser makes Millions of Heavy People even FatterHow is it that many of the people who watch the Biggest Loser don't feel inspired, they feel demoralized? Rather than taking off the pounds, they turn even more to poor eating habits and avoid exercise. They ultimately GAIN weight! Sisson will talk with Joyce about why rigorous cardio workouts and food deprivation are not required for a great body, health, and logevity! He will discuss secrets to reprogramming your genes, back to the basics of our hunter/gatherer ancestors. He will share seven no-sacrifice lifestyle changes for staying slim and youthful. Walk for exercise instead of sweating needlessly at the gym. 01:00:00Powerful Patientnoweight loss,exercise,health,cardio workouts,endurance athleteHow is it that many of the people who watch the Biggest Loser don't feel inspired, they feel demoralized? Rather than taking off the pounds, they turn even morhttps://www.blogtalkradio.com/powerful-patient/2010/01/28/healthcare-for-all--fact-or-fantasyHealthhttps://www.blogtalkradio.com/powerful-patient/2010/01/28/healthcare-for-all--fact-or-fantasy/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/01/28/healthcare-for-all--fact-or-fantasyThu, 28 Jan 2010 20:00:00 GMTHealthcare for All - Fact or Fantasy?Is it possible, or even desirable, for all Americans to be able to afford healthcare? With the public and legislatures evenly divided, where do medical professionals stand? Dr. Melvin Kirschner is uniquely qualified to weigh in on the topic. He has spent almost 60 years working in the American health care system first in public health and then as a family practitioner and biomedical ethicist.01:00:00Powerful Patientnohealthcare,pre-existing conditions,medical ethics,medical insurance,insurance reformIs it possible, or even desirable, for all Americans to be able to afford healthcare? With the public and legislatures evenly divided, where do medical professihttps://www.blogtalkradio.com/powerful-patient/2010/01/21/helping-doctors-find-the-right-diagnosisHealthhttps://www.blogtalkradio.com/powerful-patient/2010/01/21/helping-doctors-find-the-right-diagnosis/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/01/21/helping-doctors-find-the-right-diagnosisThu, 21 Jan 2010 20:00:00 GMTHelping doctors find the right diagnosisGetting to the right diagnosis is not an easy process. There are thousands of diseases to choose from – too much for any human being to hold in his or her head. Support is being sought from computers, but computers are only as smart as the people whose knowledge is captured in the programming. Jim Hitchin from SpectraScience shares with Joyce the benefits that his WavSTATR Optical Biopsy System and LUMAR Cervical Imaging Systems are bringing to the doctor’s arsenal of tools to determine whether tissues are normal, pre-cancerous, or cancerous. 01:00:00Powerful Patientnohealthcare,diagnosis,rare diseases,bioterrorism,drug interactionsGetting to the right diagnosis is not an easy process. There are thousands of diseases to choose from – too much for any human being to hold in his or her headhttps://www.blogtalkradio.com/powerful-patient/2010/01/15/communicating-with-your-childrenHealthhttps://www.blogtalkradio.com/powerful-patient/2010/01/15/communicating-with-your-children/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/01/15/communicating-with-your-childrenFri, 15 Jan 2010 20:00:00 GMTCommunicating with your ChildrenAccording to a national PTA poll, nearly half of all dads fall short of their parental responsibilities. Dads, claiming job and outside the home responsibilities, are seriously limiting their family time. National educator and storyteller K. Sean Buvala talks with Joyce about simple solutions to engaging your children through bedtime storytelling. "Storytelling, in all its forms, is critical for building reading and math skills," says Buvala. It's also an easy way to spend quality time with your children." He shares ten ways to get teenage boys to talk! 01:00:00Powerful Patientnochildrearing,storytelling,adolescents,talking with teens,parentingAccording to a national PTA poll, nearly half of all dads fall short of their parental responsibilities. Dads, claiming job and outside the home responsibilitiehttps://www.blogtalkradio.com/powerful-patient/2010/01/14/the-dad-influence-is-crucial-to-your-childs-develoHealthhttps://www.blogtalkradio.com/powerful-patient/2010/01/14/the-dad-influence-is-crucial-to-your-childs-develo/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/01/14/the-dad-influence-is-crucial-to-your-childs-develoThu, 14 Jan 2010 20:00:00 GMTComparative Effectiveness in MedicineThere is a great deal of talk in the press about Comparative Effectiveness Research -- both pro and con. On one end of the spectrum people fear that the government will mandate the cheapest possible treatment. On the other, physicians are worried that they and their patients are being swayed by the marketing hype generated by pharmaceutical companies while there is little evidence to prove that a new expensive treatment is significantly better than a tried-and-true modestly priced treatment. Tony Coelho, chairman of the Partnership to Improve Patient Care, visits with Joyce to talk about the issues surrounding this new initiative. Note: Daddyteller session moved to Friday 1/1501:00:00Powerful Patientnomedical treatment,new drugs,CER,comparative effectiveness research,healthcare reformThere is a great deal of talk in the press about Comparative Effectiveness Research -- both pro and con. On one end of the spectrum people fear that the governhttps://www.blogtalkradio.com/powerful-patient/2010/01/07/does-this-stress-make-me-look-fatHealthhttps://www.blogtalkradio.com/powerful-patient/2010/01/07/does-this-stress-make-me-look-fat/#commentshttp://www.blogtalkradio.com/powerful-patient/2010/01/07/does-this-stress-make-me-look-fatThu, 07 Jan 2010 20:00:00 GMTDoes this Stress Make me Look Fat?Worried about the holiday weight-gain? While holiday party buffets don't help, it's actually the big S -- stress -- that's to blame for most of our weight woes. Feeling overwhelmed causes many unhealthy habits. Under stress, we tend to sleep less and reach for more sugar, caffeine and comfort foods. Debi Silbert talks with Joyce about how to get out of this negative spiral, stress less and smile more. A nutrition expert, personal trainer, and whole health coach, Debi will explain what to do if your schedule (and pants) are bursting at the seams!01:00:00Powerful Patientnoweight loss,stress,stress management,guilt,chronic illnessWorried about the holiday weight-gain? While holiday party buffets don't help, it's actually the big S -- stress -- that's to blame for most of our weight woeshttps://www.blogtalkradio.com/powerful-patient/2009/12/17/spices-to-stall-breast-cancerHealthhttps://www.blogtalkradio.com/powerful-patient/2009/12/17/spices-to-stall-breast-cancer/#commentshttp://www.blogtalkradio.com/powerful-patient/2009/12/17/spices-to-stall-breast-cancerThu, 17 Dec 2009 20:00:00 GMTSpices to stall breast cancer?A new study from the University of Michigan looked at compounds derived from the spices turmeric and black pepper. Researchers found that they can stop the growth of stem cells that give rise to breast cancer. At the same time, the compounds had little effect on the normal breast cells. The researchers suggest this could be a potentially less-toxic option for preventing breast cancer in women at high risk. Joyce speaks with Dr. Madhuri Kakarala, M.D., Ph.D., R.D., clinical lecturer in internal medicine at the U-M Medical School and a research investigator at the VA Ann Arbor Healthcare System.01:00:00Powerful Patientnoturmeric,breast cancer,stem cells,tamoxifen,chemopreventionA new study from the University of Michigan looked at compounds derived from the spices turmeric and black pepper. Researchers found that they can stop the grohttps://www.blogtalkradio.com/powerful-patient/2009/12/14/healing-and-strengthening-your-heartHealthhttps://www.blogtalkradio.com/powerful-patient/2009/12/14/healing-and-strengthening-your-heart/#commentshttp://www.blogtalkradio.com/powerful-patient/2009/12/14/healing-and-strengthening-your-heartMon, 14 Dec 2009 21:00:00 GMTHealing and Strengthening Your HeartDr. Heather Shenkman, a Los Angeles based cardiologist, is capable of performing complex angioplasties to open up clogged arteries of the heart, which can save the life of a heart attack victim. However, she would prefer to prevent heart disease in the first place. She focuses on the importance of a healthy lifestyle, helping her patients make permanent changes that will lead to better health and longevity. Dr. Shenkman talks with Joyce about exercise and nutrition for a healthy heart.01:00:00Powerful Patientnoheart,vegan,nutrition,exercise,healthy lifestyleDr. Heather Shenkman, a Los Angeles based cardiologist, is capable of performing complex angioplasties to open up clogged arteries of the heart, which can savehttps://www.blogtalkradio.com/powerful-patient/2009/12/11/connectingHealthhttps://www.blogtalkradio.com/powerful-patient/2009/12/11/connecting/#commentshttp://www.blogtalkradio.com/powerful-patient/2009/12/11/connectingFri, 11 Dec 2009 20:00:00 GMTConnecting Hair Loss and Enlarged Prostate?Benign Prostatic Hyperplasia (BPH) is the age-related overgrowth of specific prostate tissues, which often progresses to enlargement of the prostate. An enlarged prostate can constrict the urethra, causing various lower urinary tract symptoms. More than half of men in their sixties and as many as 90 percent in their seventies and eighties have some BPH symptoms, according to The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC). There may be a connection between common hair loss and risk of BPH. Joyce talks with Andy Goren, President of PharmaGenoma and HairDX, about the genetic research that is pointing to this connection. 01:00:00Powerful Patientnohealthcare,hair loss,enlarged prostate,benign prostatic hyperplasia,geneticsBenign Prostatic Hyperplasia (BPH) is the age-related overgrowth of specific prostate tissues, which often progresses to enlargement of the prostate. An enlargehttps://www.blogtalkradio.com/powerful-patient/2009/11/19/cure-your-ailing-will-powerHealthhttps://www.blogtalkradio.com/powerful-patient/2009/11/19/cure-your-ailing-will-power/#commentshttp://www.blogtalkradio.com/powerful-patient/2009/11/19/cure-your-ailing-will-powerThu, 19 Nov 2009 20:00:00 GMTCure Your Ailing Will PowerDr. Elayne Feinsod, a physician, long-term dieter and vegetarian, has read extensively on nutrition as it relates to health and weight control. She talks with Joyce about her new book, "The Perfect Cure for Your Ailing Willpower" and the do's and don'ts for successful dieting.01:00:00Powerful Patientnoweight loss,diet,will power,biggest loser,healthDr. Elayne Feinsod, a physician, long-term dieter and vegetarian, has read extensively on nutrition as it relates to health and weight control. She talks withhttps://www.blogtalkradio.com/powerful-patient/2009/11/05/coordinated-clinical-careHealthhttps://www.blogtalkradio.com/powerful-patient/2009/11/05/coordinated-clinical-care/#commentshttp://www.blogtalkradio.com/powerful-patient/2009/11/05/coordinated-clinical-careThu, 05 Nov 2009 20:00:00 GMTCoordinated Clinical CareDr. Eric Jonasch speaks with Joyce about the Clinical Care Center he has organized for von Hippel-Lindau disease at M.D. Anderson Cancer Center in Houston, Texas. We will discuss why it is important to coordinate care among multiple specialists for a given patient, and what benefits accrue both to the patient and to the medical team with such an approach.01:00:00Powerful Patientnomedicine,patient care,healthcare,coordinated care,hospital careDr. Eric Jonasch speaks with Joyce about the Clinical Care Center he has organized for von Hippel-Lindau disease at M.D. Anderson Cancer Center in Houston, Texahttps://www.blogtalkradio.com/powerful-patient/2009/10/29/dr-groopman-on-doctors-and-faithHealthhttps://www.blogtalkradio.com/powerful-patient/2009/10/29/dr-groopman-on-doctors-and-faith/#commentshttp://www.blogtalkradio.com/powerful-patient/2009/10/29/dr-groopman-on-doctors-and-faithThu, 29 Oct 2009 19:00:00 GMTDr. Groopman on Doctors and FaithDr. Jerome Groopman, Chief of Experimental Medicine at Beth Israel-Deaconness Hospital in Boston is also an award-winning author. His books THE ANATOMY OF HOPE and HOW DOCTORS THINK provide helpful insights into how we can improve our interactions with our doctors. Please join us for a conversation with Dr. Groopman.01:00:00Powerful Patientnomedicine,diagnosis,healing,family support,teamworkDr. Jerome Groopman, Chief of Experimental Medicine at Beth Israel-Deaconness Hospital in Boston is also an award-winning author. His books THE ANATOMY OF HOPEhttps://www.blogtalkradio.com/powerful-patient/2009/10/23/nourishing-hope-for-autismHealthhttps://www.blogtalkradio.com/powerful-patient/2009/10/23/nourishing-hope-for-autism/#commentshttp://www.blogtalkradio.com/powerful-patient/2009/10/23/nourishing-hope-for-autismFri, 23 Oct 2009 15:00:00 GMTNourishing Hope for AutismJulie Matthews, certified nutrition consultant, explains why and how children respond to diets for autism, and offers practical guidance for nutritional intervention. Julie's insights help us understand how nutrition can help with a number of medical conditions.01:00:00Powerful Patientnoautism,nutrition,prevention,healthy diet,family supportJulie Matthews, certified nutrition consultant, explains why and how children respond to diets for autism, and offers practical guidance for nutritional intervehttps://www.blogtalkradio.com/powerful-patient/2009/10/08/hearing-and-depressionHealthhttps://www.blogtalkradio.com/powerful-patient/2009/10/08/hearing-and-depression/#commentshttp://www.blogtalkradio.com/powerful-patient/2009/10/08/hearing-and-depressionThu, 08 Oct 2009 19:00:00 GMTHearing and DepressionMichael Nilsson, VP for Auditory Research at Sonic Innovations, talks with Joyce about hearing -- the role it plays in our lives, what happens when hearing is diminished, how to recognize that it's time to see an audiologist, and what options there may be for healing or compensating for hearing loss. It's not just older people -- 43% of people with hearing loss are under 55. And among people with hearing loss there is a much higher incidence of depression anxiety, insecurity, worry, and low self-esteem.01:00:00Powerful Patientnohearing,deafness,depression,healthcare,hearing aidsMichael Nilsson, VP for Auditory Research at Sonic Innovations, talks with Joyce about hearing -- the role it plays in our lives, what happens when hearing is dhttps://www.blogtalkradio.com/powerful-patient/2009/10/06/Worrying--The-Worry-Warts-CompanionHealthhttps://www.blogtalkradio.com/powerful-patient/2009/10/06/Worrying--The-Worry-Warts-Companion/#commentshttp://www.blogtalkradio.com/powerful-patient/2009/10/06/Worrying--The-Worry-Warts-CompanionTue, 06 Oct 2009 19:00:00 GMTWorrying - The Worry Wart's CompanionBeverly Potter has written a book about worrying - an important human function, but one which we need to manage. We talk about the benefits and risks of worrying in these difficult times, and how to become a "smart worrier".01:00:00Powerful Patientnostress management,worry,anxiety,stress,healthcareBeverly Potter has written a book about worrying - an important human function, but one which we need to manage. We talk about the benefits and risks of worryihttps://www.blogtalkradio.com/powerful-patient/2009/10/01/Paying-for-Health-CareHealthhttps://www.blogtalkradio.com/powerful-patient/2009/10/01/Paying-for-Health-Care/#commentshttp://www.blogtalkradio.com/powerful-patient/2009/10/01/Paying-for-Health-CareThu, 01 Oct 2009 19:00:00 GMTPaying for Health CareDr. Arlene Ash seeks to improve quality and reduce costs in health care by changing how we pay doctors, hospitals and other clinicians. How does how we pay for care affect the long-term interest of patients? Why is it hard, but necessary, to pay for quality, not quantity, in health care?01:00:00Powerful Patientnohealthcare,healthcare reform,insurance,hospitals,doctorsDr. Arlene Ash seeks to improve quality and reduce costs in health care by changing how we pay doctors, hospitals and other clinicians. How does how we pay forhttps://www.blogtalkradio.com/powerful-patient/2009/09/24/Heroic-Acts-in-Humble-Shoes-Nurses-tell-their-storiesHealthhttps://www.blogtalkradio.com/powerful-patient/2009/09/24/Heroic-Acts-in-Humble-Shoes-Nurses-tell-their-stories/#commentshttp://www.blogtalkradio.com/powerful-patient/2009/09/24/Heroic-Acts-in-Humble-Shoes-Nurses-tell-their-storiesThu, 24 Sep 2009 19:00:00 GMTHeroic Acts in Humble Shoes: Nurses tell their storiesIrene Stemler, RN, tells us what nurses think about healthcare -- today and tomorrow. "Nurses are the real heroes in health care. If you want to really get the lowdown and solve the problems in health care, talk to the nurses." What makes nurses happy? How can we improve patient safety? What keeps nurses at the bedside, providing compassionate care? The answers may surprise you.01:00:00Powerful Patientnohealthcare,patient safety,nursing,medicine,healthcare reformIrene Stemler, RN, tells us what nurses think about healthcare -- today and tomorrow. "Nurses are the real heroes in health care. If you want to really get thhttps://www.blogtalkradio.com/powerful-patient/2009/09/17/Dealing-with-Inconclusive-DNA-TestingHealthhttps://www.blogtalkradio.com/powerful-patient/2009/09/17/Dealing-with-Inconclusive-DNA-Testing/#commentshttp://www.blogtalkradio.com/powerful-patient/2009/09/17/Dealing-with-Inconclusive-DNA-TestingThu, 17 Sep 2009 19:00:00 GMTDealing with Inconclusive DNA TestingIn making a diagnosis, DNA dignostics are often considered the final arbiter of whether or not you have certain conditions. But what if the DNA testing is inconclusive? Three guests join Joyce for a discussion of the practical and emotional turmoil this can create: Catherine Stolle, Ph.D., one of the top DNA testing units in the U.S.; Gayun Chan-Smutko, MSGC, of Massachusetts General Hospital; and Gary L. Wood, Psy.D., a clinical psychologist who understands first-hand the anxieties of having a genetic condition in the family. Please join us for the important discussion.01:00:00Powerful PatientnoDNA testing,diagnosis,differential diagnosis,clinical diagnosis,mosaicismIn making a diagnosis, DNA dignostics are often considered the final arbiter of whether or not you have certain conditions. But what if the DNA testing is incohttps://www.blogtalkradio.com/powerful-patient/2009/09/10/What-Women-have-to-Gain-or-Lose-in-Healthcare-ReformHealthhttps://www.blogtalkradio.com/powerful-patient/2009/09/10/What-Women-have-to-Gain-or-Lose-in-Healthcare-Reform/#commentshttp://www.blogtalkradio.com/powerful-patient/2009/09/10/What-Women-have-to-Gain-or-Lose-in-Healthcare-ReformThu, 10 Sep 2009 19:00:00 GMTWhat Women have to Gain or Lose in Healthcare ReformWomen are the primary decision-makers about health care for their families. The leading high-risk pregnancy doctor in the U.S. and advocate for women's health, Dr. Charles Hux, speaks out on behalf of the millions of women these changes would affect. He will speak about reproductive health, obesity, diabetes, and other important questions.01:00:00Powerful Patientnowomen,healthcare,reform,pregnancy,prenatal careWomen are the primary decision-makers about health care for their families. The leading high-risk pregnancy doctor in the U.S. and advocate for women's health,https://www.blogtalkradio.com/powerful-patient/2009/09/03/Why-Am-I-Always-SickHealthhttps://www.blogtalkradio.com/powerful-patient/2009/09/03/Why-Am-I-Always-Sick/#commentshttp://www.blogtalkradio.com/powerful-patient/2009/09/03/Why-Am-I-Always-SickThu, 03 Sep 2009 19:00:00 GMTWhy Am I Always Sick? Millions of Americans suffer from headaches, stomach problems, an other ailments like shortness of breath, abdominal pain, or even more long-term ailments like eczema and hypoglecimia. What's worse, these ailments often go untreated and undiagnosed because the cause is unclear. According to Dr. Stephen Wanger, the answer for many of these people could be simple food allergy, but it is difficult to detect. Joyce talks with Dr. Wangen about how to approach a discussion of food allergies with your physician.01:00:00Powerful Patientnofood allgergy,allergies,celiac disease,digestive complaints,irritable bowel syndromeMillions of Americans suffer from headaches, stomach problems, an other ailments like shortness of breath, abdominal pain, or even more long-term ailments likehttps://www.blogtalkradio.com/powerful-patient/2009/08/27/a-prescription-for-love-and-lossHealthhttps://www.blogtalkradio.com/powerful-patient/2009/08/27/a-prescription-for-love-and-loss/#commentshttp://www.blogtalkradio.com/powerful-patient/2009/08/27/a-prescription-for-love-and-lossThu, 27 Aug 2009 19:00:00 GMTA Prescription for Love and LossDr. Owen Stanley Surman, an internationally recognized psychiatrist, shares his personal journey through his wife's illness, both as a doctor and as a husband. When a loved one dies, we lose the immediacy of a shared identity. What lies ahead? Was it all a dream? Even medical professionals, who apply scientific thinking to the tragedy of life's end, must bace the emptiness of losing a patient or a family member.01:00:00Powerful Patientnoovarian cancer,death,psychiatry,healthcare,lossDr. Owen Stanley Surman, an internationally recognized psychiatrist, shares his personal journey through his wife's illness, both as a doctor and as a husband.