Question? Just how slow can the progression of the physical symptoms be? Can the psychiatric symptoms be more of an issue in some people for a long time? I mean paranoia, delusions, false accusations, etc. Can fidgeting be at the same stage for, let's say, 2 years? Can the subtle involuntary movements stay subtle for quite some time? Not sure about the speed of the progression of the illness - if it is, indeed, HD.
Thanks.

Everyone is different. My FIL had minimal physical symptoms until about the last 2 years and even then there really wasn't any chorea except his feet would move when he sat, but even that wasn't too much . Although he had troubles driving in regards to the gas pedal being pushed to much then too little. The psych symptoms were more of an issue. He had late onset. He really only had mild fidgeting for maybe about 10 years. At the time I just thought he had nervous energy. I guess I also remember his hands moving somewhat, but it was subtle. I really wish I could remember more. He had explosions of anger that lasted briefly then he would be fine. I think even this was only about the last 10 years or so of his life, but I didn't know him before that. I remember his family commenting that he was changing and no one knew why (there was no family history and a neurologist didn't diagnose it...a rheumatologist diagnosed). The last 2 years or so when the physical symptoms showed a little more, he actually had a decrease in the psych symptoms in that he seems to be more mellow at the end of his life.
I think I have to come to terms with my husband showing some signs. The other night he deeply hurt my feelings. Right now I am still upset thinking about it and other things. the onset of this seems to have creeped up slowly and I have to say our life/house is slowly getting a bit dysfunctional. He doesn't ever want to go anywhere in public with me or our son. In fact he really doesn't want to do much at all. He doesn't sleep in our bed anymore and forget about sex. We never have anyone over. I feel as if we have to walk on egg shells around him since he can explode. Then sometimes he is wonderful. I seriously am not very happy about my life with him right now. Sorry I'm getting off topic.
Reading through this site, I see that everyone is affected a bit differently, but this is my limited experience with HD.

Everyone is affected differently is the key here. Everything I read, which varies from Medical information to personal information, is the same. Predicting symptoms based upon cag and age of onset is somewhat of a guessing game. Granted slow progression is "typically" associated with low cag and age of onset that doesn't mean it fits everyone. There has been a lot learned about this disease but there is also a lot of unknowns. We are talking averages. Don't forget averages include those who live 30 years or 5 years from onset. That in turn leaves us with the 10-20 year range depending upon where you look.

From a personal standpoint I should have slow progression. In the last few weeks "I" have noticed changes in cognitive function. Will anyone else. I doubt it but I know it has become at least different.

You mention "if it is indeed HD". Does that mean he hasn't been symptomatic or hasn't been tested?

Good Luck,
Mike

Hi Mike,

I have no idea what it is. It was mentioned, in passing, by a psychiatrist that there was the 'possibility' that my soon to be ex-wife had a neuro-degenerative disorder. She mentioned many things but HD stood out for me. She has subtle movements and fidgeting. Hands and fingers get twisted into odd positions but she manages to 'hide' them. Arms go on little 'journeys' and are reigned back in. Toes 'dance' at night while relaxed. Has had 2 incidents with her car lately. One was written off and a lot of damage to 3rd party, the other a minor one. I noticed the movements while she was driving. The psychiatric symptoms are overwhelming. False allegations, chronic paranoia, morbid jealousy disorder, accusations of all sorts. I had to go and leave 3 kids behind, I couldn't take anymore. She is managing to convince others of her stories. Still stalking me via the kids. I believe she's very unwell. I am not aware of any history in her family. Father died a young man. I never knew him. He was in his 50s. He died of Broncho-pneumonia. Had renal issues as well.

Huntington's Disease is so variable. Progression can be very slow. Psychiatric/and or cognitive symptoms can begin as much as 16 years before the movement disorder.

I would concur with Marsha's message that cognitive, psychiatric symptoms can present themselves long before the movement symptoms. The research supports this. Unfortunately it is the movement symptoms that largely define the threshold of the disease.

In my experience, now an ex-spouse with a lower CAG count (41), it was the cognitive/psychiatric that became very problematic in our marriage. In retrospect I found the symptoms to be so very gradual in their onset over 12 years that I found myself in this bizarre world where nothing made sense. When I look back things began to fall apart in our marriage and family about ten years before my ex was tested positive for HD.

Gradually towards my ex's positive test and from my perspective there were issues with wild lying, fabricating stories, alienating me from my children, casting me as the evil parent, symptoms of personality disorders, etc. It was a really difficult time. Now my children are adults and we are still recovering and trying to mend our relationships.

Stay close to your children. My heart goes out to you.



Edited 1 time(s). Last edit at 10/09/2014 06:27PM by Concerned partner.

Thank you Concerned Partner.

Do you mind me asking if there was a history in your ex husband's family? My wife's symptoms seem to be exactly like what you witnessed. Did your ex-husband exhibit any tiny, subtle movement symptoms earlier on that you and other people missed at the time? Now that you look back on those early difficult years (which I seem to be having with my soon to be ex-wife) were there any small signs of the movement issues?
I really appreciate your feedback. I have 3 kids and I am desperate to find out what is wrong with my ex-wife. I'm at the stage now where knowing the truth would be more beneficial. I could make plans. I could seek the help, guidance and direction and begin to lay the foundations of a support system. Does that make any sense?

Regards

Hi Nalo, I've spoken with you before I'm sorry to hear things haven't improved. I think like myself you're from Ireland? If so here's a link to a UK forum which might be beneficial to you too. [hdmessageboard.com]
Take care D

Thanks, Daisy. I appreciate that.