Involuntary movements

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Permalink Reply by Darran Winfield-Stanesby on January 17, 2010 at 10:59pm

Hi Kati, Yes you are not alone, I too for many years now have had the same symptom, infact looking back it started with very little "extra" movements along the way of the particular action say reaching for the door handle and now sometimes looks like I can't make my mind up wether to reach for something or not.I was told these "extra" movements are a "clonus " type activity stimulus from the brain but I am not a medical person, get on to your specialist or intouch with an AUK Nurse.

Baclofen doesn't help , sorry does not help me in this particular symptom of Ataxia but that's not to say it may reduce them for others.

All the best
Darran

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Permalink Reply by Kati on January 18, 2010 at 3:47am

I'm glad it's not just me in a way.. though that sounds awful! But once a man was assessing me for communication aid and he pointed out that I didn't have a constant tremor from Ataxia and was I sure that it was Ataxia that I had? I guess he must have seen someone with it that had a tremor in the past.

My symptoms started noticeably in my legs first the wide gait and difficulty getting one leg to go in front of other and keeping balance which I think is what got me my diagnosis initially. My arms weren't initially as affected until these last few years. It's interesting how it was one of your first symptoms but came to me later.

Can you explain the 'clonus type activity' more? How was it explained to you?

Thanks

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Permalink Reply by louise on February 7, 2010 at 9:03am

When i'm ataxic I have very jerky movements, it's like there's an invissable string attached to my limbs that stops my limb doing what I want it to do!. It often takes many tries till I manage what I'm trying to do. This happens with arms and legs.

I can't take any muscle relaxant though as I also have hypermobility syndrome so my muscles are already very lax. This is partly why I fall so often as the two combined conditions don't work so well together and I can lose total strength in my limbs when ataxic so when I fall I can't even help to get myself back up again!

This is one of the reasons I've now been advised by my neuro physio to use my w/chair all the time and conserve my energy for when I need it, such as the neuro water based exercise sessions that our local neuro team are running. I guess it's worth a go to help see if I can get any improved strength in my limbs!

I hope your keeping well Kati, take care

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Permalink Reply by M.G.Rosales on February 7, 2010 at 4:33pm

I don't think those movements are dystonia but ataxia as the damage in the cerebellum causes dysmetria and it is the undershoot or overshoot of your intended position so it takes a few movements to pick something up,etc as you miss the target ..... ..it is a cerebellar sign and the bigger the distance the more damage I think but not sure ...the test they do with the nose,hand thinky if severe enough it causes that type of issues ...

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Permalink Reply by Kati on February 7, 2010 at 5:45pm

After watching several videos on dystonia movements I don't think it is that. I had found a good explanation of why ataxia can cause jerkyness rather than the tremor but i lost it again. I think you are right MG about the overshoot thing. I find if my arms are supported they are not as bad. My handwriting difficulties are not same as writers cramp either.

I noticed on games like when you got to aim wii remote at screen so arms are in air trying to get on button the cursor is going over it and back several times i either have to use one arm to steady the other or use the wrist weights.
I was also rubbish at the nose to fingertip tests the further away they held their finger and at one point poked myself in eye coming back to nose from furthest distance they did. I was wobbly on heel to toe test (first time ever tested 7 yr ago) cant do it at all now.

I found I can still manage with things like chopping veg, peeling spuds if i use the wrist weights and have the board on my knee (sat in wheelchair) rather reaching slightly to the worktop, my arms are more naturally in my lap supported by my body than when I have to raise them to lean on worktop even though this is w/c height and only just above my knees.

Also took board of easel (for painting) and have it sloped down towards me on desk so it takes weight of my arms and find it easier to draw and write that way.

I'm thinking of adapting a weighted cutlery holder i seen online to hold a pogo stylus for texting with my blackberry storm. I think problem with most holders are they tend to hold them in a vertical position so you are holding your arm in air with nothing to support it, this is also true for mounts for communication aids fitted to wheelchairs.

Once I figured this out and adapted some stuff some tasks got easier but unfortunately you cant apply it to everything.. washing up, cooking etc, reaching into cupboards, fridge, oven. The butter flew out of the fridge this morning and top came off thankfully the butter stayed in the tub! I get through alot of sets of plates, cups, pans that handles drop off after been continually dropped! I must invest in that plastic picnic set this year!!

Thanks to everyone who answered.

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Permalink Reply by Kati on July 24, 2010 at 8:13am

After extensive research over the past 6 months it does seem a quite severe combination (somedays) of the ataxia/dysmetria/dysarthria seem to be the cause of my movement and speech difficulties. (and not an additional condition such as dystonia as first thought).

Specialist have been unable to come up with a reason to why my muscle tone changes daily and even throughout the day. so some days I manage stuff like chopping veg (if I keep arms close to body and use weighted wristbands), other days I struggle to get my arms and legs in my clothes and takes me about 2 hours just to dress myself!

Some days I cant drive my powerchair cos its 8 directional and my arms are all over the place, (ie very twitchy and wildly overshooting etc) scooter is easier to manage if I wear the arm splints to keep arms steady and rested on handlebars as can use thumb only to control the 'wiggle stick' to move scooter forward. If I didn't have Inca to walk I probably wouldn't risk it all but its good to know I can manage to work ways around things.

Today I managed walking in co-op with their mini trollies as rollator. I use splints to steady lower legs. I had to stand quite a while and managed. Later I tried to put packet of biscuits in a cupboard three times and missed, they are now a packet of broken biscuits!!!

Think I best fit in a rest before attempting Inca's second walk, I wanted to use chair so scooter can go on long charge for trip to nature park tomorrow.

I'm now getting used to them and good thing is I get quite a workout just typing so constantly burning energy, I figure its keeping my weight stable! (so can afford to slip in the odd bar of choccy and brandy and coke!! :O) )

I do an exercise on Wii Fit called Zazen where you just have to sit on the board and concentrate on sitting very still, a flame on a candle goes out if you move and its taken me ages to be able to complete this game but I have finally managed it! Now they only happen mainly when I am trying to purposefully move my arms or legs so I can use the extra movements as a deliberate aid to weight loss and still able to keep still enough to rest (most of time - still have occasional bouts of restless legs etc).

Anyone else managed to master a little more control over their bodies? How did you do it?

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