I've read so many posts on this forum and I am really enjoying it -- not in the sense that it's not painful to read. My hearts goes out to anyone and everyone dealing with HD.

I noticed so many of you, or your relatives with HD, didn't or don't develop symptoms until quite a bit later in life. And even though 15-20 years is nothing in the grand scheme of things (meaning 15-20 years can go by in an instant), I am wondering if anyone has stories of themselves or relatives who have progressed much faster? And younger? I've mentioned in previous posts that my friend (CAG count 49) started having pretty noticeable symptoms at age 28 and only 3 years later she's deteriorating fast. She went from driving a car all around the city to barely being able to walk in less than a year.

I am worried about my friend and wondered if anyone has stories of people who have progressed much faster? As a supporter of a close friend with HD, I would love to hear some of those stories. I find they're easier to relate to. I wish my friend had 15 years left to live, but she'll be lucky if she has 5. Her mom, aunt and uncle all died from the disease within 5-8 years of showing symptoms.

Thanks for your input. I'm a huge worrier (especially when it comes to life or death diseases/situations) and I wonder if anyone can relate to what my friend (and all of us that support her) is going through with a much, much faster progression?


Thanks again

P.S. I mean absolutely no disrespect to individuals who develop HD later in life, or have a slow progression over 15-20 years. The disease is heartbreaking regardless of how long it takes. No disrespect. I just find it hard to relate to the stories about people who develop symptoms later in life, and progress slowly. I think it would be easier for me, as a supporter, to relate to stories about people who "start" earlier and progress faster. Just wanted to clarify. Thanks

Lauryn,

Both of my sons have HD. The older one is still living on his own, working, driving and doing well. My younger son developed symptoms at a much earlier age and his progression has been much faster. He now lives in a nursing home at 33 and has been there for a year. The younger one also has more psychiatric issues. It makes me think there are different types or strains of HD by looking at the 2 of them. Don't know that to be a fact but it sure seems that way.
Sounds like you are a great friend and support system for your Phd, most all of my son's friends have fallen away. Stay strong and positive.

Take care,

Carla

Hi Carla, I am curious if your sons have similar CAG numbers?

Yes, Mike (my oldest) has a CAG repeat of 48 and Tim's is 51. I feel as though Tim has always had symptoms (from birth) even though he would not be "classified" in the JHD range. There are many unanswered questions surrounding this disease and the JHD part is just one of them.

Take care,

Carla