Today, folks dealing with Huntington’s disease have many resources available; more than John and I did in the 1980’s and 1990’s. Don’t get me wrong, HD is still the cruelest disease on the planet, but HD families and their loved ones are not as isolated as we felt. Families have access to social workers, neurologists, HD clinics, information, support groups, conventions, Facebook Support Groups, webinars, and have opportunities to participate in studies and clinical trials to help research move forward. In the area of care, Huntington’s Disease Society of America has created a national network of resources and referrals that are unmatched by any other HD organization. http://www.hdsa.org
As I’ve traveled the Midwest this summer and attended HD Support Groups, Hope Walks, conventions, education days, I have seen the positive affect the availability of support has on HD families. Connecting with people who are living the same life as you is helpful and comforting.
In the 1980’s, when two of my sisters-in-law began showing symptoms, John and I felt alone, isolated without a support system. Lora, John’s oldest sister, showed psychiatric symptoms around 1984 and drank herself to death by 1989. Marcia was diagnosed by neurologists at UC San Francisco Medical Center in 1986 and Cindy exhibited symptoms in 1992. There were no support groups, Hope Walks or even a neurologist in the Sacramento California area who specialized in Huntington’s disease.
Basically, John and I learned as each sister showed symptoms, did the best we could and held on to each other for support. I also had a counselor for many years who helped me through the anticipatory grief I experienced for 25 years as each sister was diagnosed and Huntington’s disease slowly stole them from us.
Therese remembers her sisters-in-law in her memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. 100% of the proceeds from her book is being donated to HDSA in the U.S. and HD organizations around the world.
Go to Therese’s author website http://www.theresecrutchermarin.com or Amazon, B&N, iBooks to purchase the book.