Hi...I was away on vacation and just returned to see all the daily digests from Mayo Clinic. I was surprised because I wrote back in 2011 for help & support for my brother who had Huntington’s Disease. Sadly, he passed away April 10, 2015. I am still very much interested in chatting with anyone who has this dreadful illness. Thank You... Sisterlove

Hi. I have returned to this sight and although my beloved brother passed away 4/10/15, I am still searching for answers to how he inherited this disease. Surely he was not adopted, and yes a few relatives died before the age of 50 with other illnesses, but who could have carried the Huntingtons gene and it just had not been obvious. Any new information on this disease since May of 2016? Also, if anyone is caring for someone with HD or has it themself, I would love to hear from you. I am still grieving and never got to speak with anyone who has or had this disease. Thanks....sisterlove

@sisterlove, what an appropriate name. Your brother was so lucky to have you. My mother is 73 and has Huntingtons disease and she had a father she never had much contact with so he must have been the genetic link. We know he passed away fairly early in life. My moms mom is still alive and has no signs or symptoms.
All this genetic stuff gets pretty messy especially when parents are not always up front with their children. I like to believe that people have good reasons for doing what they do.
Me and my brother thought we had the same father but as an adult I found out I had a different father. This turned out great for me because I have this whole other family that are wonderful people.
Back to huntingtons, I thought my mom was having mini strokes and or significant hearing loss. So i took her to get hearing aids and she was the happiest person on the planet. But, she still seemed to be not quite right. I took her to a neurologist I was seeing for migraines and neuropathy, and she noticed the movements mom was making resembled chorea. She tested her blood and it came back pos. for huntingtons. I wanted to be tested right away and the doctor wanted me to wait to see a specialist with my mom at the teaching hospital but I insisted on the test and filled out the special papers saying I had genetic counseling and was aware of the possible immplictions of knowing and of others knowing. I didn't care, I just needed to know as soon as possible. I don't regret my decision but I wished they would have told me that I had the mutation instead of telling my mom my status and then her having to tell me. That was not very nice or professional.
I stayed with mom at her home for more than a year. We went to the movement disorder clinic at Washington university. Moms symptoms progressed and she couldn't take care of herself and I couldn't physically handle her care anymore and her husband s job kept him away five days a week. So we all decided to start looking for nursing home. We found one close to me and my brother home.
Moms been there for six or seven years and just started getting hospice care so they don't expect her to live more than six months.
It is sad and I will miss her dearly but she is extremely weak and is tired of living in a body that has betrayed her in every way. She's had hallucinations, depression, anxiety. Tremors, loss of balance that cannot be corrected with a walker, tics and clicks, chokeing on food and drinks and saliva, not able to talk in full sentences. Loss of bowel and bladder. And totally aware of all of it but can't do anything to change it.
The specialist have nothing to offer her so we stopped going.
Anyway, I'm glad I was scrolling thru connect and saw your post. I belong to another group for my lung disease/ MAC infections and don't stray much. I'm sorry you did not get the support you needed and hope things have gotten better. And thanks for taking good care of your brother!
Becky

@sisterlove Hi, Becky. I just read something this morning which I believe will be greatly appreciated around the world. I know this is not a line about Parkinson's, but I think everyone ought to know about this. Parkinson's disease, in the early stages, is very difficult to diagnose. However, now a team of researchers, I think in Japan, have discovered a previously only hinted-at fact which should make Parkinsons easy to diagnose in the early stages. That is, that if Parkinson's patients drink the same amount of coffee, the Parkinson's patient will have less caffeine in their body than the non-Parkinson's. Now, given this, perhaps caffeine metabolism will begin to be seen as a sign involved in the diagnosis/treatment of other autoimmune disorders as well, such as Huntington's, encephalopathy, Alzheimers, etc. At least there might be some hope.

@oldkarl , Thank you for being on the look out for new information and for sharing it. Happy Sunday to you!
Becky