Hi everyone,

I am 22 years old and im symptomatic early stage 1. I have a CAG of 51 which is why ive got it so young.

My dad passed away last year from HD and had a CAG of 45...his symptoms started at 30.

Would be great to talk to some other people who are symptomatic too

x

Hi Melissa. I'm so sorry to hear the results. Everyone presents differently as you probably know. You already have a good attitude so be diligent in staying positive. If you don't exercise try to start. It seems to help a lot of pHD's. Being more active has helped me and my outlook. I doubt you can keep from thinking about it, I do on a daily basis. Just don't let it consume you and forget you have a life to live and enjoy. If you our your family/friends see changes try to stay on top of those with your Doctor. Keep me posted and if you want to talk send a pm. Keep your chin up!

Mike

My son Tim also has a CAG repeat of 51. He is 34 and had symptoms very early, I would say borderline JHD if there is such a thing. He now lives with me and his dad.

Take care,

Carla

Hi Mellissa,

I have a CAG repeat of 42 and also in stage one. Right now I'm having more difficulty at work at not being able to do what I used to which was field
service work. Slowly losing what I used to call my carrer in itself causing depression which I take Lexapro and Abilify for. My movements are borderline for meds yet. Memory issues are also a real problem. My father passed from HD a few years ago so like you saw what HD can do to someone you care about. Hopefully you have a good neurologist that can help with Meds. This web site has been a big help for me as well. Full of caregivers and those affected. Be sure to keep involved with what brings you a light!

Mark

Thanks everyone!

Luckily I have a really good HD doc and she gave me new meds which seem to have helped quite a lot.

x

Good to hear Melissa.
Mike

Hi Melissa-
My daughter has a CAG of 60 and was symptomatic at 17. Her mother died at 33 when Allison was just 9 years old. Her illness fits the definition of JHD but nothing about her follows the normal JHD path. She is now almost 31 and still enjoying her life. From the beginning she decided that she was going to live her life to the fullest and not give in an inch to HD. She managed to graduate from college magna cum laude despite being fully symptomatic and unable to drive. Like you, she has a neurologist who is an HD expert that we trust greatly. She also participates in a clinical trial (Crest E at Mass General Hospital) which I highly recommend. Obviously. she has missed a lot in her life because of HD. Old "friends" have disappeared and I'm sure she misses the companionship. She used to talk with people on the computer (including this site) but she can no longer type proficiently enough. She still does spend a lot of time playing video games on her computer. She is still as sharp as ever but HD has taken a toll. She can talk but is sometimes hard to understand. She can walk but does need assistance. She lives with me and enjoys zipping around with me in our Miata which I bought five years ago just for that purpose. She still goes to concerts and ballgames and loves to use the hot tub every day. I guess what I'm trying to say Melissa is that you and Allison both got a bad break. HD is not good for anyone but is especially heartbreaking when it strikes young people just starting out in life. You seem to have a good attitude and I hope that you can get as much from your life as Allison has from hers.
Best wishes, Howard

Hi my name is Crystal I am 24 and have random body twitching my mother started showing signs at 29 and passed away at 43. My question is what were your first sign? What made you want to be tested? I want to get tested but i am afraid of the results.

Hi my partner was about 33 when starting with early signs he is 41 now but we live the attitude in our house NO REGRETS, he has stopped work as was a motor mechanic but as movements quiet bad now could not carry on due to safety, we have a camper van and most weekends go somewhere, I still work but he does certain things to keep himself busy, might be hard for you when people start looking at you but we don,t bother wasting are thoughts on them live to the full everyday. take everyday as it comes try not to analyse to much and do what is best for you and your family hopefuly you have there support