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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
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>
In this episode, we talk with Dr. Zackary Berger (Primary care physician, epidemiologist, and bioethicist at Johns Hopkins) and Regina Holliday (Bereaved young adult spouse, patients rights advocate and Founder, The Walking Gallery of Healthcare) about the role of primary care provider in cancer survivorship, doctor-patient communication and shared decision making for patient-centered care. Survivor Spotlight on Get Busy Living Day with Alli Ward (VP, Programs, Stupid Cancer and 8-year ovarian cancer survivor)
in Self Help
Nurse next door is able to care for your loved ones with care levels ranging from companionship right up to Nursing and end of life care.
David and Luci Shaw are excited to be able to bring senior and their families the peace of mind they nedd through focused, personalized home care services. Our talent is caring and as such, our goal is to make lives better one visit at a time.
Mike and Joyce speak with Dr. Julia Hallisy about The Empowered Patient Coalition: providing healthcare improvement and patient safety tools directly to consumers.
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.
Father 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.
Right Care Clinic is a leader in providing primary care, urgent care, pediatric, geriatric, and mobile medicine in the southern Middle Tennessee area. Our staff is dedicated to being available to answer the questions health care consumers may have. This podcast is designed to establish a dialogue between health care providers and health care consumers.
This week on Conversations In Care we bring you the a way for you to help protect your loved from financial fraud with a unique innovation in financial services that affect seniors. Kai Stinchcombe, CEO of True Link will share with us how they can help families.
Slam Dunk for Diabetes a basketball summer camp for kids with diabetes is around the corner and Monica Joyce, Executive DIrector and Diabetes Educator of Slam Dunk along with Bridgette Koselke registerd dietician and Diabetes Eductor, will join me in conversation.
September is Prostate Cancer Awareness month and we are talking to patient advocates to get a better insight into their roles in major clinical trial groups. Mike Scott is talking to Tony Crispino, patient advocate to the Genitourinary Cancer Section of the Southwest Oncology Group (SWOG) and a long time prostate cancer advocate on his role as an advocate, and address matters like training available, learning about evidence-based medicine, and funding of clinical trials. Tony will also explore the role of SWOG in recent major trials (like the CHAARTED trial and pivotal trials for enzalutamide, radium-223, abiraterone acetate, etc.) Mike Scott is joined by patient advocates Paul Carpenter, Jan Manarite, and Allen Edel.
Hosted by Marti Oakley & Debbie Dahmer
My father, Keith Blair, went into the hospital in July of 2009 for diagnosis of back pain. Without our knowledge or consent, he was given a cocktail of Risperdal, Haldol, Ativan, Tylenol with codeine, and Morphine. When I asked the doctor about this, he said it was just "hospital delirium," Sent to a nursing home, my father was given more antipsychotic drugs, along with double doses of AmbienCR, the long acting version of the drug. He ended up with the bad side effects of these black box drugs such as heart trouble, severe dehydration and kidney trouble, and sudden diabetes. He also contracted a MRSA eye infection which spread to his lungs, fell 7 times in 12 days and developed a bedsore. (He was only in the nursing home 18 days.) He ended up a second hospital due to heart and kidney problems, where the same nursing home doctor treated him.) At the second hospital, he was given daily Risperdal, and we were told to prepare for his death. When I went through the records later, I discovered that a cardiologist said he was improving and that he could be released to the nursing home in a few days.
2. How to get ALL the records.
3. Your rights in a hospital or nursing home as a patient or family member. Know the codes in your state so you can use them. if needed, if facilities try to violate these rights.
3. Dealing with the health department for complaints. Your rights in a complaint. The complaint in my father's case resulted in a new policy from the health department, AFL 1108. It mandates that nursing homes must verify that patients on antipsychotic drugs being transferred from hospitals have informed consent forms in their records, and if not, that informed consent must be obtained before the drugs can be given.
4. Dealing with the medical board for complaints.
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