My first husband was diagnosed with HD and has passed after spending his last 8 years bedridden. Our 45 year old daughter is showing signs but refuses to be tested. She has erratic movement of her eyes, mouth and facial muscles. Lately we're seeing emotional outbursts. Does anyone know if there are trials in the Houston area? I don't know if she would participate. I'm just at a loss on how to handle this. I don't blame her for not being tested. Right now we're just taking one day at a time and trying not to focus on the future.

I am so sorry to hear this about your daughter. I do not live in the Houston area. I am from Tennessee, but I wanted you to know that I read your post and this is a great site for questions you might have.

Liz

Thank you, Liz. We talk every day and I see her once a week or so. I'm trying to help her live a normal life as long as possible. Her husband is wonderful and I don't want to dwell on the future and ruin these good days (while they last) but I'm a "fixer" by nature so this is very hard for me to deal with.

I know what you mean. I really have to watch how I talk to Donnie about the future because I don't know how long he will be with me or what condition he will be.
Sometimes I catch myself thinking out someday having grandbabies, or son getting married or just what we will be like when we get old and I have to stop because I don't want to upset him.
There is nothing about this life that is easy.
I just try to enjoy and make the most of each day that we have together.

Liz

I don't think my daughter has accepted the fact that she probably has HD. Years ago she had a problem with drugs and alcohol and she says her symptoms are probably from the damage done by that but she hasn't had that problem in years and her symptoms are definitely getting worse. It's hard to resist the temptation to hug her all the time. Focusing on the present is what we all should be. There is no promise of tomorrow for any of us.

Sherry

You said your husband was bedridden for 8 years before he passed. how long before that, was he diagnosed with HD?
If it is any consolation, my son has always had a terrible temper. Lots of sudden outburst of anger, which as you know is a major red flag for HD.
After my husband was tested and came back positive, our son wanted to be tested. He tested NEGATIVE with a CAG count of 16 and 17. So there is still hope for your daughter.
I hope she also gets this type of diagnosis.

Best wishes to you and your family,

Liz

I'm not sure how long he was diagnosed before becoming bedridden. It seems like he was in mid mid 50's when he was diagnosed and he was 71 when he died. He participated in numerous trials also.
Sherry