How do others cope when their spouse or partner is of the age their parent developed HD and you'd really like to know, but you know you need to honor his or her desire not to test? I feel such panic when I see him fidgetting, tripping, etc. But then I tell myself he's doing well at work, in a high pressure job, and takes good care of himself, etc. He insists he'll know if he has the symptoms and he'll know when and if he has to test. But I don't know how true this is? He's 48 1/2 and he is eligible to retire at his job at 50. He says he just wants to make it to retirement eligibility first. We are praying for this. Also, I'm a yoga teacher, SAHM and I've decided to begin updating my skills and looking for PT work as a way to keep my skills current in case I need to go back to work sooner rather than later. But I'd love to hear from other spouses/partners. Thanks.

I think testing for some, with a family history, would be much harder than those without a family history. I'm not sure but from the retirement scenario it sounds as if he's a federal employee. If he can stick it out that's great. It was very difficult for me to leave work. You work so hard to have a good work ethic and suddenly something unseen takes this away. It is a lot of pressure on the pHD. We wonder all the time about retirement and the when's and how's. HD takes that freedom away.

Best of luck to you and your family,

Mike

Hi,

My wife is 37 years old and has huntingtons. She started to show physical signs at 32 and she had to stop work shortly after. I believe her mood swings in her late 20's may have been the starting point. My wife didn't get tested until she was 34 years of age. She knew things were changing and she wanted to know if it was Huntingtons. I was aware of the family history before getting married and was praying that she was on the good side of the 50/50 chance of not inheriting the disease. We now have 3 very young kids all through IVF to ensure that Huntingtons wasn't passed on. So that's one thing I don't have to think about. Coping isn't easy and have thus far avoided any antidepressants even though it does get tough. My mind doesn't stop thinking. I have watched my wife deteriorate over the last 6 years. I also have been facing the prospect on how am I going to provide care for my wife and how long can I do it for. My wife and I came to an agreement that once she is at the point where she can no longer move on her own then that is when she will be placed into a caring facility that have all the resources to provide the care that I cannot. with everything that she is going through she is always smiling and upbeat. Her strength is remarkable.

Just posted on the board, a response that I would echo here.
Also check how long sick leave will carry him between when he would have to stop work and when SSI would kick in, if you are eligible for SSI. My phd had sick leave built up to carry him for months while the paperwork and waiting period passed, thankfully.

You may want to double check your STD and LTD as well as any other insurance. Once diagnosed you won't be able to get it with HD.
Mike

My husband was in a similar place as yours, good job, could take care of himself, but as you say there were little signs. However, there were even greater cognitive signs, he was getting really, really angry and he knew he wasn't going to be able to work much longer. He was very proactive about the disability end of things and we were very blessed with all the work that he did. He has been home for almost a year and a half and he doesn't like it anymore now than he did when he was first done. But to answer your initial question, it wasn't until after his mother passed (she had HD, and fell in the shower and died from the fall) that he decided he better be tested. I cried when the results came back. It has to be their decision I'm afraid no matter what. I think it is wonderful that you are preparing yourself for what may come, it never hurts to be prepared. Good luck!

My husband also did this. He put the ball in motion and set a date to stop work, and we paid for private disability insurance all during this time so that we would have that income during the time we were waiting for SSDI. It really helped not only because it was money coming in, but the mental part of not having to worry so much about how we would survive.