May is Huntington’s Disease Awareness Month
As the month of May comes to a close, I wish to honor the caregivers who lovingly cared or are caring for a loved one through the long, progressive disease process for the cruelest disease on the planet; Huntington’s disease; a fatal, hereditary disorder that progressively destroys the nerve cells in the brain. It’s describes as having ALS, Parkinson’s and Alzheimer’s disease at the same time. There is no cure or therapy and HD attacks children as well as adults. http://www.hdsa.org
Video on What is Huntington’s Disease? When an individual receives a positive test result for Huntington’s disease, the individual, spouse/significant other and the whole family’s life changes in a second. The task of caregiving may not begin immediately, but at some point the individual will require help performing their ADL’s; Activities of daily living are routine activities people do every day without assistance. There are six basic ADLs: eating, bathing, getting dressed, toileting, transferring and continence.
“Caregivers walk their own unique path through chronic illness – a role that is simultaneously exhausting and meaningful, isolating and joy-filled. Life as a caregiver can be difficult but it is deeply valued.” Chronic Joy Ministry
Info on managing the care of an individual with HD: https://caregiver.com/articles/huntingtons-caregiver-guide/
Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website http://www.theresecrutchermarin.com & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.
100% of the profits from the book is being donated to Huntington’s Disease Society of America (HDSA).