I know everybody is different when it comes to symptoms, but I am in disbelief at how fast my sister is progressing. A year and a half ago I would have told you with great confidence that my sister had NO signs of HD. After she was diagnosed with HD (47 CAG); I began to admit that she may have a few symptoms. I guess, now, that she had many mental symptoms for at least a decade. Anger, depression, OCD, apathy....

In the last year, at the age of 34, she had to give up driving, sometimes can't even walk, falls constantly, nonepileptic seizures, chorea(sometimes severe), can't cry, severe cognitive problems, involuntary cursing, etc....

Sometimes she says stuff that doesn't make sense. She can't remember yesterday, but we can go on for hours about our childhood. She remembers more details than me!

How can this disease take her so quickly???? Is this HD normal???? My dad has been slowly declining for years, but is still way better than my sister.

Rarely, she comes back. The old sister, seemingly with no symptoms. Is that normal? What does this mean?

My Husband has had syptoms for 11 years...been diagnosed for 4 years at 45 CAG...He cant work or drive...but seems to have a steady slow progression.

You would think that progression would be a steady but slow decline and it may be as far as brain cell loss and the like are concerned, but it is actually more often experienced as a series of plateaus and abrupt declines. I believe that is because the brain compensates for problems and so does the person until a critical mass is reached and the coping strategies don't work.

That said, it is always good to examine possible reasons behind abrupt declines. One possibility is medication. People with HD can respond very differently to medication (as individuals and as people at different stages of the disease) so it's always good to consider whether the medication has caused a temporary decline. Another often overlooked problem especially in women is UTIs. Pain feedback is often disturbed in HD (with pain being caused by the brain or with pain from medical problems not being transmitted to the brain. Urinary tract infections are common in HD because it's hard to maintain hygiene when someone has chorea and sometimes they become quite severe before being noticed. Any kind of untreated infection can cause a temporary decline so I would have her dental health checked as well.

My Mom is 67 and was officially diagnosed with HD in 2006 (CAG 40). Over the past three months, I was stunned to have noticed the huge decline in her condition. It seemed as if it happened overnight. She has been falling and her short term memory is all but gone. As you said, she can remember details from her childhood and from when my sisters and I were children, but she can't remember tasks from five minutes prior. From the research I've been doing, it looks as though this is normal in the later stages of HD and sadly, will continue to worsen. On the brighter side, we have been blessed for so long with the mild effects of my Mom's HD. We are now concentrating on the next phase of her care, which unfortunately will have to be provided by more expeienced caregivers than my sisters and me. I know it is frustrating, but just try to remain patient with your sister and enjoy the good moments while you have them

My husband went from working full time to being placed in a nursing home within 3 years. He fell at work and hit his head and ended up with a pretty significant brain injury. Before his fall, as far as I can remember he didn't have any HD symptoms. He has declined a lot in the 4 years since being diagnosed. It's very scary. I can barely understand anything he says and obsesses over everything and is having a hard time swallowing. I have nothing to compare him to since he is the only one ever diagnosed in the family. I know one woman who was diagnosed many years ago and she is in better shape than my husband (or was the last time I saw her). I'm guessing that my husband is already in middle stages and has been for at least a year or more.

Thank you everyone for sharing your experiences. That is very interesting about untreated infections; she does have pain in her teeth all the time and has not seen a dentist in at least ten years (no dental insurance). She has medical and goes freaquently, so I think it would be beneficial to get her to a dentist.

It is always good to have a reminder to enjoy the good times we are still blessed to have. I think my brother and I are the best people, as far as patience, in her life right now. Our family is still trying to "fix" or change her thinking. She takes it as criticism (as I think I would too). I try to talk to my family about it and it ends up in fight. But, that is a bond I have always shared with her; we grew up with constant criticism and we dealt with it through each other. Unfortunately now, it is even worse on her.

It is surprising how many people say a head injury really kick started their symptoms. Scary.