I was 30 years old before I found out what actually had killed my Grandmother, my Father, my Uncle and later my Cousin. It is possible that my brother had HD too, but he had so many medical problems, this was never diagnosed. I will not be tested because of the effect that a positive test would have on my life. I have had no children, so there's no chance of passing it on. But I am constantly aware of my behavior. Every time my body twitches for some reason I think "Is this it?" It's a terrible way to live. I am amazed at how many people in our country are afflicted with this terrible disease, and other than my family, I have never known anyone who had it. My father was never diagnosed, but his symptoms got bad enough at age 54 that he had to take disability. It wasn't until my Uncle started with symptoms that a diagnosis was made. I am now 55 yrs old. I thought I was safe, because I had always heard that it hits between the ages of 30-50. Now I found out that the odds are lower as you pass age 50, but the chance is still there. I am glad I found this site, because now I can discuss this with other people who undestand what I'm going through. Anyone who wants to E-mail me may do so.....TooTooTootie*at*aol.com

Hi Tootsie
Lord!! does your message ever strike home! I too am at risk and untested,and our situations are very close indeed,HD entered my life about 30 years ago also,or at least thet was when I started to pa attention,I come from a large Family(6 boys 4 girls) that has been hard hit by HD,i am 57 and the last of the Boys,I also have a Sister,Late Stage,in a Nursing home,all of my Brothers are in Various Stages with the last one starting to show symptoms 2 months ago,all except 1 Brother who is Deceased have Late onset,Late 50s,the most recent is 64.you have found the Place for information and contacts with the HD community,and I want you to feel Welcome and to know that your input and and experience is most welcome. Above all,don't feel alone in this as there are some wonderful people you will meet who are walking the Path with You.Please feel free to contact me at any time,and take advantage of the information on this site,you will be amazed.Again Welcome Tootsie.

Dear Tootsie,

Those emotions you described are so classically "at risk" ones. If you took a poll I would dare to venture that 99% of the at risk group would say they feel the same.

I watched my every move as well. I was forgetful, grumpy at times and stumbled now and then. Ironically I never noticed it before finding out about HD. You would think if it was that prevelant I would have.

Now I sit here two years post testing. I tested negative and do you know that I still have not clearly got those years of at risk symptoms cleared out of my system? I think they must have got the wrong result. Or perhaps I am just loving my pHD family and friends so much I am taking on sympathy symptoms...maybe it's just the reality of ME.......whatever it is...being at risk takes a toll and you are normal.

Keep talking to others. You will find it helps.

Hugs/Jvabean