Hi everyone,

- and firstly many thanks for your messages of support after my first post yesterday.

As I said in that post, my husband was showing signs of movement disorder but can anyone tell me whether it is possible for a person to control those movements - especially in the early phase. We were in bed last night and the cat decided to join us, wrapping herself around his legs. Conscious of not disturbing her he was able to lie motionless for over and hour whilst watching TV.

He's also been learning to ski over the past 6 months - and doing very well at it so far! Better than me!

Kathy

I don't think one can just stop. Is it possible he was asleep. the movements can stop then.

My Mom over the last few years has times when she moves her feet more than other times . I have heard others comment that being over tired can make symptoms worse . Kind of a cute story ; Mom went in the hospital a few months back with bronchial problems ; while she was there , the DX. tweaked her meds . He put her on I think an antipsychotic of some sort . Anyways , she started feeling mentally a bit better . More talkative . Anyways one night she says to my Dad " My legs are moving , I wonder why " . She had never noticed up until then that they moved . db

I have HD. Yes, it is possible to temporarily "control" movements--I call it "acting normal." It is tiring though. I don't even know if I am conscious of it all the time. Like when I walk to my car after work. If somebody is walking along beside me or towards me I seem to straighten up temporarily but once they are past me my body slumps again and my walking gets worse.

I control some muscles by clenching other muscles. Much of the time I really am not aware of it. I notice I now press the spread between my finger and my thumb against my face below my nose when I eat, speak,or look at someone for an extended time. It helps me to control my other muscles enough to sustain these motions longer. For some reason.

Margie

My dads uncle has alot of movement esp in his head, arms and legs, last year after my great grans funeral I was sitting nxt to him and his wife brought him over a cup of coffee, I was concidering making an excuse to leave the table but when he picked his cup up he was perfectly still... I thought it was pretty amazing concidering how bad his movements are, perhaps it just takes alot more concentration, energy and effort to do.

Louise

Hello,
I to have movements in my hands and feet. But when my husband gives me a back rub or when the dog curls up around my legs the movements seem to stop. Not sure why this happens but maybe its' because I seem to be more relaxed when getting my back rubbed, can't explain the dog thing!! lol

Teresa

I remember almost panicking at the doctor's office when I would try and tell the doctor of problems we had and Teresa was busy removing 3 yrs of symptoms in the office. Luckily the doctor said she was aware this happens. The expenditure of energy to be "good" seemed to equaled out with a letdown later where she was almost worse for a day or two until she settled back into her most comfortable state and was her natural self.

Hi Kathy;

Although my wife's chorea or movements aren't quite as bad as others, I have found that situations surrounding her can be an important factor, in triggering movements. We have medications for chorea, but unless I give them to her at the first sign of an episode, they don't always work. Something as simple as a hospice visit, can be overwhelming for her and trigger movements. So, I not only rely on medications to help control her movements, but I also make sure conditions are as stable, calm, and non-overwhelming as possible. A steady schedule of events, like bedtime, eating time, seems to help too.

I have also found that meds used for sleeping disorders at night, need to be rotated, or she will not sleep. It's a delicate balance, and once things get out of whack, it's difficult to stop. Bottom line is, I've found that keeping her comfortable, unstressed, and feeling secure and quiet (also limiting company or any overwhelming activities), is a primary key for us. Then again, my wife has later life onset, which seems to have less severe symptoms. Hope that helps

My husband would hold his movements in all day at work and come home and fall apart. When he went on disabilty it seemed his movements leveled off and got better because he didn't have the swings.

A job can be a great deal of stress = at least it was in my case. I had to fight tooth-and-nail for my job, because quite frankly it was necessary. I had no other source of income.

I often wasn't able to wait until I got home in order to "fall apart". I often had to unexpectedly dash to the side of the highway, partially through my hour commute, in order to barf my guts out.

It was hell. Fortunately, I survived it for long enough to be able to afford disability retirement.

Now I'm on it - and I find the stress much less. No more need to go through that grueling ordeal every day.

Now, my stress is much less - and I swear my symptoms (which were already mild) have even lessened.

There's no doubt that disability retirement has lessened my stress - but, of course, had I not undergone the additional stress of holding onto my job until I was able to AFFORD disability retirement - retirement itself would not have provided less stress. If you can't make ends meet, that's pretty stressful.

So, I held out for a couple more raises (and thus an increase in the basis for my disability retirement benefits) - so NOW, finally, I can kick back and enjoy the benefits I worked so long and so hard for!

Yes, MRO and Eric, I eventually had to stop "acting normal" at work because it took too much energy and concentration. I just had to let it all hang out, so to speak. At first I was quite self-conscious but I decided what is better, looking normal but falling apart at the end of the day and missing work to recoup or looking "twitchy" but better able to pace myself through the day and keep working? I also had to ask for help with the duties that cause me the most stress making me the most sick. I try to do other things in the office that are less stressful for me.

Margie