Most of my hubby's symptoms are cognitive. Although there is some chorea, it is not something that others (who don't know about the HD) actually notice. He takes respiridone for the agression, and fludrocort for low blood pressure. Whether the BP thing is from the HD or the respiridone, I do not know. He has expressed that he can no longer drive, because he says he doesn't "think" fast enough, and when he says he wants to drive somewhere, I am able to remind him that he can not, with no backlash. He sleeps between 12-16 hours each day, but in intervals. He has problems with dizzyness alot, and balance issues if standing or walking for a period of time. He is having "some" bowel incontinence. This usually happens while he is urinating or passing gas. He is concerned about this. I think the question would be "what stage"? ( okay folks, hang with me, I'm having a hard time putting my thoughts to words) Does the incontinence "signal" the start of something more??? (worse).......

Bowel incontinence can happen early in the disease, it doesn't necessarily signal a step up in progression. HD interferes with signals that the body provides to the brain. It can cause bowel incontinence because the person doesn't correctly perceive the need to go to the bathroom. It also prevents the person from correctly perceiving where their body is in space so they can knock into doorways or other people.

One thing your husband can try is bowel conditioning. I learned about this in a book on preparing for childbirth decades ago. The book recommended conditioning bowel movements during pregnancy to avoid constipation after childbirth. You choose something you do every morning but not usually at other times such as having a glass of orange juice. Then you sit on the toilet and try to go. After a few days of this, it starts to work. Then you just head to the bathroom as soon as you finish the orange juice (and if you drink some at any other time, make sure you go then.) This will drastically cut down on accidents.

Try to be calm and matter of fact about this with your husband. Explain that certain symptoms are to be expected and that there are often work-around solutions such as this one.

Hello greeneyes. Hope this finds you both well today. I struggled for a long time with much of what your husband is except the incontinence.
My first symptoms involved severe vertigo, nausea, vomitting, horrible fatigue, sleeping or lying down often, depression, congitive problems. My balance and vertigo has improved somewhat after a couple of months of physical therapy involving isotonic and isometric exercise. If your husband is able, you have nothing to lose and a lot to gain. I believe the two years of doing practically nothing hurt as much as anything. I was diagnosed with slow mental processing and I understand exactly how he feels. You feel kind of dumb sometime around others but you have to shake it off. I function better in familiar surroundings, still driving locally. It's good he knows his limitations. As you add stimuli into my field of vision the perception of where I am in space quickly decreases and thus the balance, vertigo. Loud noise or background noise may even be a factor. The more I am exposed the more exhausted I become. From my experience and findings, some Dr's don't thing vertigo and balance are part of it. Fortunately mine does and a posturography test will certainly tell the story.I find getting up with my wife in the morning and stirring around a while then lying down throughout the day helpful. I believe the two years of doing practically nothing hurt as much as anything. Good luck to you. If you want to talk more send me a PM.
Mike



Edited 1 time(s). Last edit at 11/02/2012 04:40PM by mikee.