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.

Kati

Wow! Kati you should be so proud of yourself for this achievement - the only comparison I can make, is that it helps to keep warm and exercise early as poss.

Well done you - you were my inspiration to get wii fit and I follow your example to exercise virtually every morning - I dont have all your challenges but.... at 68 years, old age is creeping on ;o( Wii fit is not only good for my body but mind too.

I am still bidding on eBay for Wii fit plus game as you recommended - will snap up that bargain eventually. lol xx

Thanks Patsy... it has been an uphill struggle. Hope you win Wii Fit Plus soon, it is good cos you can put together the ones you can do as one long routine.. without having to keep pressing the A button and going between them all! . or there's a selection of games and exercises together which focuses on different target areas.. ie bum and legs, tummy.

All the games can be accessed individually too and wider choice.. the grandkids will love them!.. most of them can be adapted to do from sitting. I've been able to adapt nearly all of the games and about half of the yoga and muscle exercises. (for me personally.. you may be able to do more of the standing ones that can't really be adapted?)

Good luck! xx

p. s. your doing great for 68yrs old Ataxian!! ;0)

thanks for that - Will keep you posted on my eBay bidding Kati - take care xx

Hi Kati

Thanks for the info.I am certainly stiff for the early am weebut it unstiffens by the time I get up. I do the physio exercises first thing in the morning i was given by the physio.I was verty sceptical at first but i reckoned with all her experience she knew more than me/The purpose was not really to strengthen but to keep the opposite limb from wobbling and controlling movements very slowly.It has been two months so far and the wobbling has defintely improved.I still have the intention tremor but I might try your suggestion about increasing the time I grip.

Marie

Hi Marie.

It seems yours is opposite to mine, as I start with more more floppy muscle and get stiffer as the dystonia element kicks in and starts making muscles contract. I don't know how long it will work for as I feel as I'm tricking my brain at the moment and as I didn't used to get up till about 8am and now I'm exercising from 5am or 6am... I'm sure it will eventually catch on and start stiffening up quicker at some point! Hopefully I will have lost most of weight I need to lose before then!

If you have difficulty getting started with retraining your hands try using weighted wristbands to start with, or if you have family member around to help they could like put their hand over yours to steady it and gradually use less pressure, maybe start with working out how much they need to push down (gently) on your forearm/hand for your tremor to stop or reduce significantly. It may not work depending on your type of ataxia, but it's worth a try. For me, the dystonia elements cancel out some of the ataxia ones and vice versa to some degree.

Some 'sensory tricks' work for both, for me.

Kati

I am SO impressed! Well done you on the exercise and weight loss. (I am trying to shift a stone which has crept on!)

We are obviously all very different but these all work for me and might help someone.

I have a stationary exercise bike which I have phases of using! Unfortunately you probably cannot alter your fancy bike but these are a few tips my neuro-physio taught me. Build into your existing routine a couple of minutes warm-up and down. When you can, every so often, do about 30 seconds of increased resistance, then go back to normal. Every so often try pedalling backwards for a while. This is much harder thn it sounds to do smoothly and is really good for the co-ordination. Breaking the session up like this really helps me because I have the attention span of a gnat!

Not wishing to drone on but I do find my Organic Curcumin , I take 450mg twice a day, and Vegetarian Opti 3 (Omega 3 EPAand DHA), I take one capsule twice a day. I started a few months ago because last time I saw my neurologist she wanted to put me on Baclofen and I did not want to. My night cramps have almost completey gone and I am looking forward to seeing the neurologist in October to see if she can see any improvement in my responses?Oh do not forget to be very careful if you are on any other medications that they will not react, but it is just curry powder and algal oil so hopefully not but I think Warfarin might be a problem?

I got the idea initially from reading your previous post

http://www.livingwithataxia.org/forum/topics/neurogenesis-the-power-to?commentId=2508026%3AComment%3A44798

Anyway, keep-up the excellent work!

Love Lit

Hi Lit

Glad these things work for you and you're doing well. I'm not keen to go on Baclofen so I'll look into those, hopefully they will be ok with thyroxine and anti-histamines?

so they are two products - one called Organic Curcumin and the other called Vegetarian Opti 3? Do you have links to these?

My bike goes at set speeds but there is a dial you can turn up and down I have it on Max to burn the most calories in the shortest time. If you have wii fit and fasten the remote to your leg whilst cycling you can make the character move on the jogging game!

Kati x

I know how easy it is to put on a stone VERY gradually - I did this every 10 years from when I was 20 to my sixties!!!

I saw Dr Giunti at Ataxia Centre yesterday and she prescribed Baclofen for muscle stiffness - only 5ml daily - am I going to regret this? To be taken at night.

Take care, Patsy x

Hi Patsy

I hope not, but maybe you can let us know if you have any side effects the first time, how they make your feel? (groggy etc) and if these lessen after been on it for a while. It may help others decide too.

Kati x

Very low dose isnt it? xx

Is it a liquid? you said ml (millilitres?)

havent got it yetr - probably got it wrong and should be mlgm



Kati said:havent got it yetr - probably got it wrong and should be mlgm

Is it a liquid? you said ml (millilitres?)

Tablets may be mg or mcg (micrograms). Liquid maybe lower dose as it would work faster than tablets.

Hello Kati

Lol! I like it (the WII trick) and the maximum thing. I THINK the idea of all her tips are to try to change the different muscles you are using.

Sorry been so quiet recently. Very hectic here but hopefully calming down a bit now.

I have checked and I am fairly sure you are ok with your drugs. I have to take anti-hitamines all the time for skin allergies and hay fever. This site is quite good for checking drug interactions.
http://www.mskcc.org/mskcc/html/11790.cfm?Disclaimer_Redirect=%2Fms...
If you are a bit strapped for cash at the moment try just the curcumin. Oh thinking about it, if you do not want to splash out on something that might not help, I can very easily pop some in the post for you to try first? I have lots here. Just let me know.
http://www.amazon.co.uk/manako-Organic-Turmeric-Curcumin-Capsules/d...
The Opti 3 is here. I buy 3 for 2 because Ian takes them both too, for his rheumatism. (Right couple of old crocks!)
http://www.opti3omega.com/
Anyway hope this is clear.
Love Lit


Hello Patsy

Really sorry of worrying you!

Dr Giunti wanted me to try it, but I only didn't fancy it because it is a general muscle relaxant and I have enough trouble trying to control things, especially my bladder. I do not actually have any medical reason for my decision!

Loads of ataxians take it and it is a very low dose that they start you on.

IF you have not started it yet and the Curcumin and Omega 3 do not react with anything you already have to take you could see if they work for you? But we are all SO different.

Anyway, please do not worry because Baclofen has been around for years and helps an awful lot of people.

Perhaps someone who is already taking it could post something?

Take care

Love Lit

Patsy said:

I know how easy it is to put on a stone VERY gradually - I did this every 10 years from when I was 20 to my sixties!!!

I saw Dr Giunti at Ataxia Centre yesterday and she prescribed Baclofen for muscle stiffness - only 5ml daily - am I going to regret this? To be taken at night.

Take care, Patsy x

I tried BACLOFEN,but I found it made me very "floppy" too floppy to be confident in my mobility and contol my independence. I told my GP this and said I was very wise to do this.

At the moment I DO NOT take anything

Alan

I was worried about effects on my bladder too. I'd rather it didnt empty unless used cathetar than did it when it felt like it!

I also found the stiffness helps me with been able to stand and manage a few steps which couldn't do if legs were really floppy.

I have found exercise, and heat helps for stiffness and for me weight on arms helps give me better fine motor control. splints worn with the metal part on over forearms and hand instead of under it has same effect as someone placing their hands gently on your arms to steady them.

My right arm is steadier when supported, so is my driving arm (for powerchair not car) and I can still manage write signature and short writing like in a birthday/xmas card etc but I find my left has better range of motion and reacts faster although it also has more involuntary movement in that side so not safe to drive with it but can still type and move over keyboard faster than can get right hand to respond to what want it to do.

My left foot has better control than right and can type with big toe on ipad and intellikeys keyboard with big toe on left foot too. I can hit the bigger keys with right toe too but more accurate on ipad with left.

Its just been a case of re-learning how to work my body, I once said its like waking up in someone else's body and no-one has left the instructions.. so just have to figure out how everything works as you go along!

Hi Lit

Thanks for the links. I'll check them out over the weekend.

I did try with a regular pedal exerciser but I just don't have the co-ordination to pedal fluently and enough to burn any calories. I've overdone it a few times as it pedals for me it doesn't feel like I'm exercising I can just sit watching telly while its doing it, where as Wii fit wears me out even though I don't burn as much according to wii, but its the energy needed for getting up and down off floor between standing and laying down/sitting exercises!

Kati x

Was that high dose Alan?