I am a 36 y/o female and I just tested + for HD a few months ago. My cag is 42. I watched my dad suffer from this insane, confusing, infuriating, hopeless disease. My sister (who tested negative) and I had to deal with helping with paying his bills, taking him to appt's, and getting him groceries. And then the really crazy stuff started. I would get calls from the local police that they found him walking around town warning people about radiation coming from the tv... that's after he threw everything out of his apartment into the street. After receiving several calls we finally had to put him in a NH. He passed away last October.
I am scared that I will follow in dad's footsteps. Will I alienate myself like dad? Will I have a numerous amount of suicide attempts? Will I run around town like a crazy lady?
Nobody ever knows what HD is. I tell my friends and they say "did you say you had MS?"
I'm glad to read this forum because it's comforting reading everyone else's confusion too.

It is very hard to watch someone suffer from HD and know that you also carry the gene. The important thing to remember is that you are not that person and that you can well prepare yourself so you are not doing those things that he did. You mention that you have a sister. Will she help you prepare as to how and what you want when the time comes that you need help? I suspect that she will help you as much as possible. I would stay close to her now and also gather other friends who 'do' understand the disease. Now is the time to search those people out. It is never fixed in stone that people with HD all act alike. Many in this forum have lived full lives for a long time with HD, you can too if you prepare.

Bridie's advice is right on! I was actually going to tell you the same thing. I know it is hard to deal with your results. Try to stay optimistic. We are living in a great time of scientific and medical discoveries. Some days that alone is what keeps me from giving in to despair. Hugs to you!

Robin, welcome.
We are all here for you, no matter what you may be going through. Thank God you have a sister who does not test positive so that she can be there for you.

Robin, your CAG 42 is low; there's no reason to expect to follow in your dad's foot prints. You are a totally different person with your own identity.Each of us travels down our separate path. If you are a kind, genteel person, you will most likely be that same person whenever you start showing sympyoms. My 50-year old (CAG42) daughter still lives by herself and is functionally GOOD. She is without a doubt one of the nicest people one could ever hope to meet. You are so young - still have your whole life in front of uou...it's easy to says,'don't worry", but it is less likely to come to fruition...I turned 75 in September and am fortuate to have a CAG of 40..

Welcome Robin!

Carla