Hello everyone,

I'm new here so I'm not quite sure how this works. But thank you in advance for reading my post and offering any feedback you may have. I'm 22 years old and I have a father with HD. I guess I'll also go ahead and add that he's an alcoholic and has been ever since I was a child. I found out about his disease by accident one night, when he was drunk. My parents were planning on keeping it a secret from me and my older brother, which I think is awful, so regardless of how I found out, I'm glad I did. My brother still has no idea though, my parents made me promise that I would not tell him. I struggle with this decision every day. Is it wrong for me to keep that from him? I don't think it's my place to tell him... It's been about 5 years since I was informed and it's been the worst 5 years of my life. Considering my dad is also an alcoholic, it's very hard for me to tell if his actions are due to alcohol or if it's because of the disease. I get SO angry with him when he drinks and I feel horrible for it. Who am I to judge him? I can't begin to understand what he has to go through every day, how he feels knowing he has an incurable disease, or that he has to go through it basically alone. He doesn't talk to me about it, he doesn't talk to anyone about it. I'm at the end of my rope with trying to help him and I just don't know what to do anymore. I love and care for him more than anything and would hate to give up on him, and in all honesty I really don't think I could. I guess I'm just curious as to if anyone elses family member with HD is also an alcoholic, I would love to speak with you.

Arnold, sorry for what you are going through. That must be a terrible burden to keep this from your brother. It is my opinion that your brother has a right to know that HD is in the family. He does have a 50/50 chance. HDA affects are choices in life: marraige, childern, healthy style... There are things we can do, plus clinical trials... I think it is not fair for you to have to honor that promise to keep it a secret from him. Oneday, he will know and then what will he think that you knew and didn't tell him? IDK, just my thoughts.

I don't have anyone who is an alcoholic and HD+. My brother stuggles w/drug addiction and he is at-risk. Sometimes I think he shows symptoms, then again it could just be the addiction. Very hard to tell and painful to watch someone you love make such poor choices and yet I know that addiction is powerful and very hard to end (physical and such a mental battle). My prayes go out to you and your family...

Thanks for the response blue. I realize theres a chance of resentment from my brother when he finds out I have not told him, but if I do tell him, i'll have to deal with the guilt of betraying my father and mother. There's really no win there. In time I'm sure I will make the right decision. I agree with you, it's extremely difficult to watch someone make poor choices, not realizing how much it truly affects the people around them. I've learned the hard way that you can't help someone who doesn't want it. Thank you for your prayers, I'll be sending them right back to you.

Is there a chance you could get your mother on your side, in regards to telling your brother? Maybe if just the two of you could discuss it, she might understand that it's so important for people at-risk to know...so they can be as informed about their future as possible.

I'm sorry, alcoholism alone can be awful. Is there an Alcoholics Anonymous or Al-Anon group in your area? Even though your father may not be willing to help himself right now, they can provide you with a lot of support and information. I'm sure they've had people with diseases and disabilities...I think AA has a brochure on their website about it.

Make sure you take care of yourself...yes he has the disease already and it's gotta be really hard for him, but you're also at-risk and that can be a very heavy burden as well. Right now it sounds like you don't have any family support, it can really help having someone in your life who you can talk with. How do you feel being at-risk?

While I wouldn't have expected your father to tell you he has HD (my husband has it and he often thinks he's perfectly fine), I honestly think your mother should have told you so that you could understand why your dad is the way he is. With HD, you lose your ability to control your impulses and if he is addicted to alcohol, it's not something he'll admit to. HDSA has a national youth alliance for Youth and Young Adults to age 29. They have a website and their own Facebook page. You can find the link and sign up on the HDSA.org website. I had a teenager and young adult when my husband was diagnosed and I told them right away and have since had many discussions about their potential diagnosis and their dads' ongoing needs and disease progression. Do some research about HD, and tell your mom that your brother has a right to know what is going on. If she doesn't tell him, you should. It might be easier to deal with your father if you both understand what is happening to him. It has helped my son a lot. He used to be very angry and combative with his father until we learned that there's not much we can do to make him better, but there was a lot we could do to help ourselves deal with HD and not get caught up in all the drama and agressivness. You will need your brother as a friend and ally when your dad has bad days.

Noni- My mother is the main person who is strongly against telling him. She thinks he's not strong enough, and doesn't want him to live his life as if he has it, even though he's 25....There are a few AA meetings around my area and I have tried to get my father to go but he will not. He has been in and out of rehab three times and nothing ever seems to work, I think it's just a dead end. I'm doing my best to take care of myself, but it usually falls second to taking care of him. I've been considering going to get tested soon, just need to save up the money. I also need to find a place that does it, plus I do not have insurance at the moment. As far as how I feel about being at-risk, I don't really know. Some days it never crosses my mind and some days I just feel hopeless. I'm scared to find out what the future holds, but I think knowing whether I'm carrying the gene will help me plan for my future the right way.

djcloc- I think my mother felt like she could just blame his symptoms on his alcoholism. He's always been somewhat of an angry drunk and he makes very irrational choices..which has only worsened due to HD. Thank you for the link, I will definitely look in to that. My brother doesn't really have contact with my dad anymore anyway, which is another reason why I have put off telling him. He cut him out of his life about a year ago after a couple incidences happened because my dad was drunk. I guess my brother just doesn't want to deal with him anymore, and I can't say that I blame him. Sometimes I wish I could just cut him off too...but I know that I wouldn't be able to. He's my world and I'm all he has left since him and my mother have been divorced since I was about 10 years old. She's remarried now so she doesn't have much contact with him either.

My boyfriend has HD and he drinks - heavily at times. His emotions are definitely more out of control when he is drunk. There are times when he does not remember things he does or hateful things he says. Everything is always ok the next day. It is an awful disease and I hope you never have to go through it yourself.

Wow Arnold, just reading that you and your parents have not told your brother kind of makes me mad!!!
He is an adult, what are you thinking?
Try this...If you knew there was a needle on your couch and your brother was about to sit right there...knowing he may and may not sit on it...would you warn him???
The chance he could be at risk for HD is not something to play with, TELL HIM
Give him the opportunity to make his own decisions !!!!
Are you mature enough to make decisions? sounds like he prob is too.
o.k. so he and your mom get upset with you, so what !!!! you will get over it !!!!