I chose a life of uncertainty, allowing the unknown intruder in our home, which opened my heart to love more deeply, and knowing John could fall prey to the intruder at any time, made my life richer.
We Can Never Lose Hope…
I chose a life of uncertainty, allowing the unknown intruder in our home, which opened my heart to love more deeply, and knowing John could fall prey to the intruder at any time, made my life richer.
We Can Never Lose Hope…
Huntington’s disease is grueling, heart breaking, a stressful condition for any family to bear. HD families are devoted to their loved one, as John and I were to my three sisters-in-law, Lora, Marcia and Cindy. It comes down to, “that’s what you do for the people you love”.
Two local families, the Miller and Granlund, who I personally know, have shown their love and devotion to their dad/spouse for years. The Miller and Granlund children, recently stepped up and formed a new committee, the HDSA San Francisco Bay Area Chapter HDSA National Youth Alliance (NYA) in honor of their fathers. NYA is a collection of children, teens, and young adults from across the country that motivates young people to get involved in their local HDSA Chapters, Affiliates, and Support Groups.
We Can Never Lose HOPE…..
To read John and my love story while living in the shadow of HD, read
I’m a Huntington’s disease advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author. Visit my website and learn about HD: https://theresecrutchermarin.com
I am angry and I’m going to do more in 2023 to get the HD Parity Act passed!
Statement from the nonprofit, Huntington’s Disease Society of America (HDSA).
New York, NY, December 20, 2022 – Once again, Congress has failed to take action to ensure that families affected by Huntington’s disease (HD), a devastating brain disorder that impacts more than 200,000 American families, have uninterrupted healthcare coverage. The FY23 Omnibus Appropriations Package, which will be voted on later this week, does not include provisions of the Huntington’s Disease Parity Act (S. 868, H.R. 2050) which would eliminate the two-year waiting period for Medicare coverage and Social Security Disability Insurance (SSDI) benefits for those who qualify for federal disability because of the serious progression of their Huntington’s disease.
For HD-affected families, congressional inaction has real consequences. Families affected by HD will continue to have to brace themselves for two years without medical care in a system that puts their needs at the bottom of the congressional priority list. Two years is too long for someone disabled by their incurable neurological disease to suffer without medical coverage, and Congress could close this loophole for relative pennies on the national budget.
Unfortunately, despite 12 years of advocacy, HD families will continue to suffer federal neglect and wait for the Medicare and SSDI systems to support their health needs. HDSA will stand by them and support them until appropriate care and a cure is available to all.
As some of you know, I call Huntington’s disease (HD), the cruelest disease on the planet. It’s the Holiday Season, a time we celebrate with family/friends and, it can be a difficult time for HD families who have lost loved ones. When I see obituary’s on folks who have passed away from a complication of Huntington’s disease in the holidays, my heart aches for the family. (I’m also sad when it’s not the holidays)
During the holiday season, whether it was a recent loss or one that occurred some time ago, feelings of grief can be heightened and may seem enormous. Griefland by Thomas Nadelin (book on grief)
Experts on grief suggest we remember, new memories does not erase old memories. These
We Can Never Lose HOPE…..
I’m a Huntington’s disease advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author. Visit my website and learn about HD: https://theresecrutchermarin.com
As a former caregiver to my two (2) sisters-in-law who had Huntington’s disease, Marcia and Cindy Marin, there was contentment, and sadness, in caring for these two ladies that I loved. My personal goal was to honor their dignity, keep them independent and comfortable as long as possible. The sadness I felt was heartfelt watching them slowly lose everything, their independence, unable to work, unable to do activities of daily living; bathing or showering, dressing, getting in and out of bed or a chair, walking, using the toilet, and eating.
Caregivers who care for Huntington’s disease (HD) loved ones have a huge challenge; HD’s journey is long, 10-20 years. The neurodegenerative diseases, HD, ALS, Parkinson’s, Alzheimers can stretch out for years.
This takes a toll on caregivers so caregivers must take care of themselves. The reality is, if you as a caregiver become ill, stressed where you cannot take care of your loved one, what happens to them?
This blogs main purpose is to provide a link to HD Caregiver Support Groups. They are online so easily accessed. Here are a couple coming up.
We Can Never Lose HOPE…..
I’m a Huntington’s disease (HD) advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author. 100% of book sales is donated to the nonprofit, HDSA.
Amazon link- Watching Their Dance
One driving force behind research on the human brain is the availability of human brain tissue. A brain donation is an invaluable gift anyone can make to further how researchers understand the brain and different diseases that affect it, like HD. Learn more about brain donation on Huntington’s Disease Society of America’s website, here.
To Register as a Brain Donor: Visit the HBTRC website, email [email protected], or call 800-BRAIN-BANK (800-272-4622) for more information.
My two sisters-in-law, Marcia and Cindy, both chose to donate brain tissue to Harvard Brain Bank after they died. They both were altruistic and wanted to help find a cure for HD even though they would not benefit from it.
To watch a session on Brain Donation at the HDSA Annual Convention last June, visit https://youtu.be/J5O8VEd-jww
We Can Never Lose Hope…….
Today is the last day of May 2022, Huntington’s Disease Awareness Month
Every year during Huntington’s Disease (HD) Awareness Month, my thoughts focus on my three (3) sisters-in-law, Lora, Marcia and Cindy, who died from HD complications.
I am Lora, Marcia and Cindy’s Rememberer, one who remembers, a precious role that I have embraced for the rest of my life. I remember them in many ways; I write blogs about them, volunteer for the nonprofit Huntington’s Disease Society of America, I penned a book to create their legacy, our family talks about them often and every night before I go to sleep, I pray there will be a therapy/cure for this horrific disease in my lifetime.
Thank you in advance. Please Make your donation here.
We Can Never Lose HOPE…
May is Huntington’s Disease Awareness Month
The last ten (10) years in my health care career, I worked in hospice at a small hospital in Auburn CA. Hospice care is a special kind of care that focuses on the quality of life for people and their caregivers who are experiencing an advanced, life-limiting illness.
My advice to HD families caring for their loved one is to make it clear to the doctor that you want hospice care when appropriate. When the hospice program receives the referral from the doctor, they will make a visit and evaluate your loved one and admit him/her to hospice care.
We Can Never Lose Hope…….
I met Deb Wilson-Hobbs in April 2017 at the Help 4 HD convention in Elk Grove, CA. I had just published my nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, and Katie Jackson, President of Help 4 HD, allowed me sell my book at the event. (the profit I made that day from book sales, I donated to Help 4 HD)
We Can Never Lose Hope…….