Huntington's Disease Support Group

Sorry, no help, just love. I found out a little over a year ago that I have it. My big brother is very head-in-the-sand about it. He doesn't want to think about it, and he's only a few years younger than I will be when my time starts to approach (35-45 years for me, I'm currently 27, he's 32.) He doesn't wan to think about getting tested, and his wife doesn't seem to feel any differently. I couldn't not get tested, I felt like I had ants in my clothes until I got my testing done. Everyone deals with stuff differently, I guess. I hope you find some help.

Thank God, I'm not alone!!!!

After having one of his outbursts last night, today I want to scream and cry because he hasn't been tested, doesn't want to be tested, and I wonder if this is just a bad relationship that I can't see or is it symptoms of HD.

His father died of HD complications. As far as I know, none of his brothers or sisters have it-some have been tested, but I don't know who. They don't talk about it.

I am so relieved to know that I'm not the only one dealing with the unknowing. Thank you.

Thank you for your comments. I can only come on here when my husband isn't at home so it's taken a while to reply. DawnDenise it is good to know I am not alone also. I have had a very isolated couple of years in terms of huntingdons - no one in my husband family likes to talk about it. This is fine until my husband loses his temper for about the fifth time or more in a day, especailly at the children. Some days are better but you go round and round in circles thinking is it or isn't it? I have now also got the phone number of a regional adviser so if things get bad I know I can call someone for advice. Hope you can find something similar.

I can completely relate to "no one in my husband's family likes to talk about it." It has always seemed like a forbidden subject, but he's not extremely close with his family, anyway.
I finally broached the topic via e-mail with his brother and sister-in-law last week. Heard enough when his brother indicated that he is too young to be displaying symptoms. He's going to be 48 this year. I've done my research (because it's all I can do) and know that symptoms often begin between the ages of 30-50. I think his brother is comparing him to their father, who died at a later age from HD complications.
I can appreciate you having to "sneak" on the forum when your husband isn't around. Mine doesn't know I'm out here, either. :)

Hey, have found another moment on my own! It's so good being able to chat to someone who understands. Sounds like you are in a similar situation to me. My husbands uncle wasn't diagnosed until he was in his 70's but had suffered with 'depression' on and off for years. When I have spoken to anyone who say they know about the disease it is usually the physical stuff they know, not the behavioural/emotional effects that could be mistaken for other things or put down to personality. My husband doesn't want any friends to know and because he is not tested it feels like you can't say "this might be the problem". Its so frustrating!! I might be wrong - it might not be huntingdons. Could all be in my head!
How are things with you. Do you have anyone else you can talk to?

If it's not Huntington's, then we're both in trouble!

I have some of my own family members that I've told about the situation, but I have no one who understands (besides you) what it's like living with not knowing... wondering if it's me, us, him or HD. It seems that not one day can go by anymore without him getting mad at me about something!

Every once in a while, when he totally forgets something, he'll joke about the possibility of it being "Alzheimers." Sounds stupid, but that's what they thought his dad had for a long time. He thinks it's funny, it freaks me out.

I'm frustrated to the point of researching testing costs and working up the nerve to ask him to get tested. But then I realize my need to know shouldn't supercede his not wanting to know. In the meantime, the attiude issues are forcing me to build an emotional wall, and is that any more fair?

Sorry i've taken a while to reply. It's so hard isn't it! All relationships go through bad patches but when it feels like it doesn't end, and you don't know whether it's yourself, the relationship or an illness - its just so frustrating. How much patience should you have - do you take into account it might be HD, and then you can't officially say to anyone my partner has HD coz you just don't know.! I totally get the wall thing - it might not seem fair, but it certainly seems neccessary some of the time, at least I find it so. But then I find it even harder to connect when things are bad. I love him, I just don't always like him and find it hard to beleive he loves me. I guess I just have to keep on going.
take care, thinking of you

Yeah, I love my guy, but I don't like him much anymore. The wall is getting so thick and so tall with every nasty comment he makes or nitpicking fight he starts-which is often anymore.

We don't have any children together, but I have two that have been on the bad end of his attitude enough that I felt I had to tell them about the possibility...but I often wonder if I'm just making excuses.

I want to be there for him but I just don't know if I can hang on much longer.