• 01:08

    Lymphedema Voice & Activist: Leigh Elke

    in Health

    Leigh comes forth today talking about what brought her into the passion for the activism for lymphedema rights, what she has done with that time frame, and what her hopes are for the future.


    Leigh was diagnosed at 21 years old with lymphedema/lipedema, PCOS, fibromaylgia, Chronic fatigue syndrome high blood pressure, hypothyroidsm all on the same day. She had gained 230 pounds in one year. After reaching 500 pounds she had gastric bypass surgery, successfully losing 340 pounds in one year. After consulting with Dr Herbst in June 2014 for a "formal" diagnosis of stage 3 lipoedema she has undergone 3 surgeries for lipedema, all reimbursed by BCBS PPO. Additionally she has authorization for 6 total surgeries and 1 tummy apron removal. She is a disabled stay at home mother of 3, hoping to help others in the same situation with a non profit organization and insurance questions/answers.


    To learn more about the activism and lymphedema issues:


    http://facebook.com/lymphedemainthenews


    Lymphedema Treatment Act http://lymphedematreatmentact.org


    http://facebook.com/beyondwordslive 


    http://blogtalkradio.com/oralhistory 


    and remember to keep #SharingYourVoice

  • 00:51

    Lymphedema Voices: Sheryl #Project1000000Voices Lymphedema Is No Joke

    in Health

    First time I talked to Sherly, she told me that she had once been a teacher but hasn't been able to work FT in decades.  She has had Lymphedema since in the early 90s.  She has difficulty fulfilling her life, difficulty in transportation.  She has no way of getting a compression garment (which can cost $500) without having to choose between a garment or paying rent because her income is just that stressed already.  Complicated by tumors (one removed and another that needs to removed).  She has written her Represenative but hasn't had a response just yet.  Hopefully, he'll get on board with the Lymphedema Treatment Act which will authorize Medicare to pay for the garment that helps to keep the lymphedema from getting worse, which causes so many other dominoing issues (like mobility, possible MS, and other diseases that stem from the damaged lymphatic systerm.  


    In Texas, we have 3 co-sponsors for the Lymphedema Treatment Act, and we have many more to go.  There are 4 bipartisan leads and 99 co-sponsors of the Lymphedemat Treatment Act across the United States.  We really need about 200 co-sponsors for this bill to be passed in the House.  We need your support to help the many Sheryl's out there with similar stories.  Please go to the http://lymphedematreatmentact.org website to sign up being a Team Member in your State and go to the "How You Can Help" and send your legislators personalize letters.


    Listen to the show that we had on November 20th as well for some other call to actions that you can do to help.


     


    #LymphedemaTreatmentAct #LymphedemaStory #Project1000000Voice

  • 01:00

    Support for Caregivers who Love and Help others

    in Current Events

    Are you helping a family member, spouse or someone in need but losing yourself in the process?  How can you find comfort and support for you when your daily activities take every ounce of life out of you?  Can you love and care for others but also love and care for yourself?  What are the limits of our heart strings?  And can we recognize what is within our grasp to help and what is not in our power to change as God's plan is in control?


    Peter Rosenberger, author of Hope for the Caregiver:  Encouraging words to strengthen your spirit will be sharing his personal story and how he now helps others to find the support caregivers so desperately need.  Peter offers caregivers practical, faith-based and compassionate help and understanding.  He will be sharing about loss of identity, isolation, fear, resentment and guilt while offering hope to those who care for others.


    For more information visit:  www.caregiverswithhope.com

  • 00:31

    Lymphedema Voices: Sheryl #Project10000000Voices Lymphedema Is No Joke (Part 2)

    in Family

    The system hiccupped a bit and we didn't get to talk for the full time; however, we are back on this day with the rest of the story.


    First time I talked to Sherly, she told me that she had once been a teacher but hasn't been able to work FT in decades.  She has had Lymphedema since in the early 90s.  She has difficulty fulfilling her life, difficulty in transportation.  She has no way of getting a compression garment (which can cost $500) without having to choose between a garment or paying rent because her income is just that stressed already.  Complicated by tumors (one removed and another that needs to removed).  She has written her Represenative but hasn't had a response just yet.  Hopefully, he'll get on board with the Lymphedema Treatment Act which will authorize Medicare to pay for the garment that helps to keep the lymphedema from getting worse, which causes so many other dominoing issues (like mobility, possible MS, and other diseases that stem from the damaged lymphatic systerm.  


    In Texas, we have 4 co-sponsors for the Lymphedema Treatment Act in Texas, and we have many more to go.  There are 4 bipartisan leads and 104 co-sponsors of the Lymphedemat Treatment Act across the United States.  We really need about 200 co-sponsors for this bill to be passed in the House.  We need your support to help the many Sheryl's out there with similar stories.  Please go to the http://lymphedematreatmentact.org website to sign up being a Team Member in your State and go to the "How You Can Help" and send your legislators personalize letters.


    Listen to the show that we had on November 20th as well for some other call to actions that you can do to help.


     


    #LymphedemaTreatmentAct #LymphedemaStory #Project1000000Voice

  • 00:57

    Why Caregivers Find it So Stressful Dealing with Healthcare Providers & Agencies

    in Caregiving

    Join Dave Nassaney, The Caregiver’s Caregiver, as he interviews Author, Carol Levine, the director of The Families and Health Care Project at The United Hospital Fund, a health services research and philanthropic organization whose primary mission is to shape positive change in health care for the people of New York (and elsewhere).


    Their campaign, Next Step in Care, provides easy-to-use guides to help family caregivers and health care providers work closely together to plan and implement safe and smooth transitions for chronically or seriously ill patients.


    Transitions are moves between care settings, for example, hospital to home or rehab facility, or the start or end of home care agency services. Because transitions are often rushed, miscommunication and errors can occur.


    Her book, Living in the Land of Limbo: Fiction and Poetry about Family Caregiving, is a first-of-its-kind anthology of short stories and poetry about family caregiving by renowned authors and others has just been published. Compiled and edited by Carol Levine, and published by Vanderbilt University Press, the new volume is a valuable addition to the national discussion on family caregiving and to the Fund’s work, which has focused on improving partnerships between caregivers and health care professionals since 1996.

  • 00:30

    What Caregivers Need to Know About New Cancer Treatments

    in Health

    eCareDiary's caregiving expert, Margery Pabst will speak to Dr. David Decker, Executive Director of Cancer Institute at Florida Hospital, about advances in cancer research and treatments benefiting patients and caregivers.

  • 01:06

    Lympedema Voices #Project1000000Voices Lymphedema Treatment Act 2014 Reflection

    in US Government

    In September 2014, a group of lymphedema advocates converged upon the Capitol Hill to talk to the US House of Represenatives and Senators about the Lymphedema Treatment Act, as well as had a Congressional Hearing to empasize the importance that it means to many lymphedema patients, caregivers, physicians, and more.  As a result, we ended up with 4 bipartisan lead sponsors from the House of Represenatives, and 91 cosponsors from many of the States.  We really need about 200 cosponsors to help ensure that this Bill passes the House.  


    Guidance was provided by the Lymphedema Advocacy Group, National Lymphedema Network, and many other supporters of the Bill.


    Join us on our Lymphedema Journey and Advocacy for a discussion on a reflection of those this year's journey at Capitol Hill (DC) and a call of action that we would like for you to do as soon as possible.


    For many more details about the Lymphedema Treatment Act, please check out the website http://lymphedematreatmentact.org.


    Also check out the Lymphedema In The News fb page http://facebook.com/lymphedemainthenews for additonaly information about Lymphedema, as well as other events/call to actions happening, especially in Texas.


    If you wish to share your story, please submit your request at http://goo.gl/forms/rqo8jg28j1


    Sponsors and Co-Sponsors of the Lymphedema Treatment Bill --- 
    https://www.congress.gov/bill/113th-congress/house-bill/3877/cosponsors

  • 00:25

    Virtual Dementia Tour for Family Caregivers

    in Health

    eCareDiary will speak to P.K Beville, geriatric specialist, author and founder of Second Wind Dreams about her research-based Virtual DementiaTour, an experiential toolkit designed to help family caregivers move from sympathy to empathy and better understand the behaviors of their loved ones.

  • 01:00

    Caregivers Need Hobbies, Activities and Outside Interests to Avoid Burnout

    in Caregiving

    Join Dave Nassaney, The Caregiver's Caregiver, Wednesday, 3/25/15 at noon, PST, (AND AFTERWARDS ON RECORDED PODCAST) as he interviews Lisa Michelle, Former Caregiver to her mother-in-law, and founder of theonline Alzheimer's Caregiver Support Group.


    We will be discussing:


    1. Why it is so important for caregivers to NOT isolate themselves from their interests and passions.


    2. Alzheimer's & Dementia


    3. Activities to help you to avoid burnout,


    4. And much, much more.


    The link is: http://www.blogtalkradio.com/davenassaney/2015/03/25/caregivers-need-hobies-activities-and-outside-interests-to-avoid-burnout

    Lisa is a singer, model and dancer, and also performs worldwide with The "Chicago Honey Bears", a full production family-oriented variety song & dance show.
    Or listen to the recorded podcast AFTERWARDS, anytime, 24/7. Share this link with anyone you know who would benefit from this discussion, especially male caregivers.

    (AFTER SHOW TIME WED, RECORDED PODCAST CAN BE HEARD ANYTIME, 24/7 AT SAME LINK)

  • 00:20

    Assisted Vacation Planning for Seniors & Caregivers

    in Health

    eCareDiary will speak to Thomas Stern, Founder of Assisted Vacation that provides person-centered planning services for those with cognitive or physical limitations allowing them to benefit from vacation and travel.

  • 00:30

    Palliative Care and Hospice: Differences Caregivers Need to Know

    in Health

    eCareDiary's caregiving expert, Margery Pabst will speak to Dr. John Guarneri, Chairman of Healthcare and Spirituality, Florida Hospital and a caregiver panel about the nuances that define and distinguish palliative care and hospice.

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