I don't think anyone will take offense to your description of what living with HD would be like.  We have all (likely) seen one of our parents living with HD...perhaps other relatives, too.  It's awful.  My mom died of HD when I was a teenager.  Now I have been tested and I know that if I live long enough, I too will die of HD.  I would give anything to live to 90, 80 even...but likely I won't.  It's ok.  There are many perspectives one can take on any given situation.

My father-in-law died suddenly of heart failure.  He had no time to tell his family he loved them for one last time...he had no time to kiss his kids and wife goodbye...he had no chance to take back the things in life he wished he could.  In an instant, he was gone.

I have a close friend who is about 50 years old.  He has had liver cancer for a couple years and is probably not going to live more than another year or so.  I cannot imagine what it is like for him to know that he probably won't be here next year at this time.  I mean, this is just 4 years of sickness and that's it.  No cure, no pushing it off further, that's it.

My point is that life is short...yes, perhaps this cliche is tired and worn, but it is meaningful.  Today I know I have the HD gene.  I also know that when I get the first symptoms of HD, I have 15 or so years more to love my kids, to love my wife, to spend time with my family, to see them smile.  It won't be all smiles and sunshine, but that's 15 more years than my father-in-law, and 10 years more than my close friend.

If you think you are seeing symptoms of HD, you may be, or your mind may be playing tricks on you.  I think it is normal for anyone that is at risk to jump to the worst-case-scenario with every clumsy move, every forgotten thought, every jitter.  I know I do.  But truly, you should get involved with a program that can help you through this...whether it is HD or not.

What state do you live in?  Have you checked to see what programs are available?  I mean, you hear a lot about HD "support groups"...but, personally I'm not into the "group" thing.  There are discreet ways to get help...to get you out of a depression, to talk through this.  There are HD programs that involve neurologists, psychologists, social workers, etc...the help is there for you to get you through this.

Charlie

yesterday someone told me that I had a conversation with them I could swear that i don't remeber having, I went home and cried my eyes out because three weeks ago I tested positive for the gene.My nana has HD and my Mom is postive. I am so scared that evertime something like that happens I think immediatly that I have the disease and can't figure out  what to do. Everytime I  do poorly on a test at school or I trip on the carpet I panic. Everyone can tell you how to feel and what they think but deep inside unless they are walking in your shoes that have no idea what it is like. I agree with Charlie don't be afraid to share with you family because that is all you have. They are your support and your life line. You will feel less alone. Believe me without my husband , sister in law and parents I would be lost. I know you are scared but reach out to whatever resources are available. It is going to be ok because it has not gotten you yet!!

I feel i can realte to you. My grandmother has HD, and recently my brother tested positive. That means my mother has it too.  They did not know my grandmother had HD when my mother had us kids, and she has never gotten tested.  It was truely a shock to learn two of my family members had HD, and I was at risk. For a really long time i just didnt think about the HD, and now it has become a reality for me.  I am going through the process of getting tested. Im very scared, frustrated, confused....and I am like you. I am convinced I have the gene.  To me it seems like the chances of me getting it are 90 to 10, not 50 to 50.  I too dont feel like I can talk to my mom or brother about it, because they are already dealing with so much.  My mom shows some behavioral signs of HD, but some of them are so broad its hard to tell if its truely HD.  Lately I worry about my future, if I will ever get married and have kids.  Everything is so up in the air, and Im very very scared. Its comforting to talk to people in similar situations.  I just feel like when I talk to other people they dont understand the seriousness of the situation.  And take me out of the equation, my mom and brother definately do have the gene, and Im so scared whats going to happen to them.  I would definately like to talk to anyone and give/recieve support.  Im only 23, but Im already scared of what my life is going to be like when I turn 40..50...will I make it to 65?

joe,

I meet my husband when he was 33yo. At that time he was struggling just as you have described. By himself, drinking (because for the moment it made him feel better), making bad desicions and not letting anyone close to him. I remember the night he told me about his mother (who at that time was in a nursing home) and his fear that he had HD. He'd not been tested but knew he had the gene and believed he was symptomatic. At that point I didn't care. I had fallen in love and there was no turning back. That was almost eleven years ago. The life we have shared, I wouldn't give up. There were times and still are times that are very tough but I have no regrets. I look back knowing that we have shared and continue to share some very special times. There are many people through out their lives that never have an opportunity to experience this. Don't cheat yourself or someone that could love you that opportunity. Good luck with your doctors appointment what ever your decision is/was.

dar