There is a man I’ve been communicating with on Facebook who was diagnosed with HD in 2005. He has a very bad back and suffers everyday. He saw a surgeon who believes he can fix it, but this man, of course, is conflicted. He wrote, “I just need someone that understands my life to tell me if I should have surgery on it or not because of my life span and pros and cons of the surgery with HD the doctor here don’t understand what is going on with me!!! I need someone with sound minds to give their opinion.”
My first suggestion was to locate a HD social worker, through a Huntington’s Disease Society of America Center of Excellence that is close to him. He went on to tell me he is 5 hours away from the center and cannot get there. So, then I suggested setting up a telephone conference call, if they would do that for him, and together they could work through the pro’s and con’s of the surgery. http://hdsa.org/about-hdsa/social-workers/ http://hdsa.org/about-hdsa/
I write this because I’m sure there are many HD families out there challenged with similar situations. I’ve often wondered, if Lora, Marcia and Cindy received a diagnosis of cancer, would they have wanted to treat it and prolong their life? These are tough decisions and I feel for this man because he doesn’t seem to have a support system, other than online.
Have a good day! Therese
Photo credit: Key Foster via Source / CC BY & Photo credit: EU Social via Source / CC BY-NC-SA