Overcoming stiffness and Involuntary movement

This is proved quite a challenge for me until I got stuck into some serious learning about how my brain worked (or didn't), how ataxia affects the brain, how dystonia affects it (separately.. if you had one or the other) and the combined affects of living with both in all 4 limbs.

Usually by the time I had managed to dress myself, get breakfast, get out with Inca and back and fed her my stiffness levels were fairly set for the day so by the time I would go on Wii Fit every exercise was a huge physical effort and it took me over a year to build up to 3 half hour routines a week, needing rest days in between.. In winter when stiffness and pain levels are higher I struggled to manage 1 or 2 a week.

After suspecting Dystonia and discussing this with my Neuro I started researching that more and found a video on YouTube explaining it, the person who had it had primary dystonia where his limbs are locked into position but some things were the same for me. For example when he went to sleep his body was 'normal' and when first waking up but soon after once his brain 'woke up' and stiffness set in his limbs went into the distorted positions.

My limbs don't do this BUT I am free of involuntary movements once I start falling asleep (or if body can reach a completely relaxed state whilst awake.. which very rarely happens! ) until I wake up. When I first wake up I have almost normal control for a few minutes then I can feel my arms and legs start to stiffen. I wondered if I could keep my muscles in the relaxed state a bit longer and slow down the stiffening process?

For the last week since I got my passive trainer bike I have switched to an early morning routine so whatever time I first wake up, I got up immediately got under hot shower to keep muscles relaxed then started straight on the floor exercises and full body stretches. I start by doing the ones that take the most control first before the involuntary movements kick in (as body gets stiffer), and end on the easiest.. doing half an hour on wii fit.

By this time I'm starting to get tremor in my left leg for some reason it doesn't happen on right, usually I'd have to stop there as lose voluntary control of that leg for a while until it stops.

However now I have the passive trainer pedals which contain a motor which moves my legs for me... (so I'm bypassing the part of brain needing voluntary control to pedal) I can still use the bike. I find it easier to keep feet on pedals with trainers on as its gives a more snug fit under the strap and slipping my splints in the trainers supports my shaky leg. The bike does a 15 mins cycle and usually by the time its finished the tremor has gone off. I usually do 2 x 15 mins in a row for half an hour.. so I'm now managing a full hour for the first time in years!.... not only that... I've managed it the last week in a row.. no rest days between.. so far. I'm also less stiffer the rest of the day (for now at least whilst weather is mild).

Another exercise I have been doing just while sat watching TV was to hold onto something to increase the time I can grip without intention tremor taking over. Initially within a few seconds of gripping something it would start.. it took a few months to get from 5 secs to 20 secs, once i got past a certain point it didn't seem to take as long to get to the next stage (5 second increments up to a minute) I'm now just past 2 mins and this is without any weights on to steady arm or splints steadying lower arm/hand.

I'm managing jobs like chopping veg better again myself and not having to rely on highly salted ready meals, my water retention has improved, I am eating an healthy diet although it was initially too low considering I was burning higher than average even at rest, which had sent my body into starvation mode. After advice from nutritionist and calorie counting group, I have worked out I should actually be on at least 2,400 calories as I burn roughly 100 calories an hour (average person without involuntary movements of same height/weight would burn around 70 per hour. or 1700 calories a day at sedentary level). I've finally managed to lose half a stone!

I'm hoping now my body is coming out of starvation mode I will drop the rest much quicker as also now managing to burn 700-900 calories an hour exercising.

It hasn't had any affect on how much my arms & leg muscles stiffen and twitch/fingers flex at rest, However I have regained a little more voluntary control back, gripping a fork and making less mess is getting easier, using things like button fasteners and styluses (iphone.. uDraw pen.. any pen! ) using my computer joystick I now have more control over and managing the on-screen keyboard with joystick when I'm using laptop from a reclined position. (MacBook stays on over-bed table now after dropping it a few times).

I am hoping to be able to maintain this routine through the winter but I'm not yet sure if the freezing temps will still make me as stiff this year despite being fitter than I was last winter. I'll crank up the heating early mornings and give it a go!!! :0)

Hope this information is of use to someone else too.


Thank you for the time and effort you put into this article Kati. My grand daughter has cerebral palsy and some of the issues you talk about here are very familiar to me. I'm going to encourage her to stay with a plan like you have going. ^5ing you for helping others! Stay in touch as we all go through the cold winter season :-)


hay kiti my name is haley I have cerebral palsy its hard for my legs to move but i try my hardest to fit in with outher people

Hi Cathy & Haley

I'm glad you found my article useful. I have found Wii Fit is great for Ataxia (balance & co-ordination problems) as the games in particular have alot that be adapted.

I don't know how much mobility you have Haley, but I have a walking frame around the front of balance board to hold onto then I can do the easy games where only have to lean left or right. On some games you need to hold the controller too..I can't do this standing.. but I sit on the board instead and that works.

It is difficult to fit in with others as sadly some people do judge people with a disability.. it will always be a part of your life...but you must remember not everyone is like that and I have also met some lovely people who have been very kind and helpful, who I have been friends with for many years.

I'm not sure how old you are Haley (apologies if you are older..than I'm assuming!) but maybe if you can do some of the games on Wii Fit or any console, you can play with other children/teens on it? Activities are good when everyone is focused on doing something particuarly if your disability also causes speech and/or hearing difficulties which can also make it difficult to keep up with what everyone else is chatting about!

Best wishes

Kati x

Kati, I never realized how similar your symptoms to mine were until reading your note. My doctors often puzzle over my tremors-ataxia-myoclonus events because they are uncertain as to the cause - my cervical dystonia or EPM1. I feel that means there will never be a perfect mixture of medications that will stop them from occurring. A bit disheartening.

I found exercise has helped me alot although at first when I started my daily program the muscle spasms did increase, but after a few months they decreased. I have been doing it since April with a weighted balance belt and weights on arms and legs and now my arms and legs are steadier and can do some of the games on Wii without them. I've also lost 2 stone in weight as I was overweight.

Here is my blog.. you may find it useful?