The battle for control!

The beginning of  last year (2011)  was a struggle… both physically and emotionally.. I bought a new rollator then I’d wonder if I should still be walking.. my arms would shake loads trying to pull myself up to standing.. I’d struggle to keep hold of the handles as my hands would flex involuntarily resulting in my unintentionally letting go and usually ending up on the floor… crutches were becoming dangerous even on a good day a few steps would be huge risk.. standing was becoming dangerous let alone attempting to walk!

My whole body would shake with the effort of trying to stand,  focus on keeping hold of whatever I was trying to hold onto,  keeping myself upright.. thats without attempting to lift one leg off floor and keep my balance on the other whilst moving forward!  whether I walked or stood that day depended on my muscle tone if my arms and legs were quite stiff it got a bit easier to stand however trying to do things around the house and type when your arms were kind of locked in front of every so often was definitely a challenge!

Luckily it never lasted long but happens at the most inconvenient moments ie trying to get your dinner out of the oven!.. do you leave it a few more minutes and hope they ‘unlock’ before your dinner goes black or see if you can manage it without been able to bend your elbows properly for the next few minutes!

so I was heading for that ‘sorry state’ the bad days were becoming increasingly more frequent than the good days… after trying a standing chair in October 2010.. although I didn’t get funding for that I did get a powerchair off the NHS to use around my house.. part of me was relieved.. the ‘rebel’ in me didn’t want it,  or should I say ‘didn’t want to HAVE TO NEED it’

But some days were just like waking up in someone else’s body and no-one had left you the instructions!  I had two choices I either had to give into it and go on medication to control my symptoms or make a last ditch attempt to understand what was happening and why.. I’ve no idea WHY I thought I could figure this out! ..after all if a trained Neurologist tells me they might ‘never know’..  how was I gonna work it out?

But I had one thing going for me.. I had every day to figure it out and no other cases than my own to work on! I needed to start right back from the beginning…  how was my body meant to work? (without ataxia) .. wish I’d paid more attention in biology class now!  so my study list:

*  how muscles work

*  the role of the cerebellum in Ataxia

* the Proprioception and Vestibular system.

*  the role of the Basal Ganglia in Involuntary Movement

Once I’d worked out that the extra movements were a result of problems with my Proprioception system (ie my brain working out where my body/limbs are in space) I needed to work out at WHAT POINT these issues came into play.  I could lie still in bed,  I could type better sat semi reclined with bedding and front of laptop supporting arms… ‘support’ seemed to be the key word here.

My first set of exercises were to lie on the floor with arms and legs down my the side.. my body had full support from the floor I couldn’t fall off it,  rollover or anything, I’d touch fingers against rug and do same with toes (barefooted for exercises)  do it with eyes open watching them move and closed.. no problems there!.. then tried raising arm off floor or leg.. now here’s where it got interesting…  if I had eyes closed to start with then opened them to see where my arm was it always seemed to be off to the side rather than directly up when I watched it as I controlled it happening… my brain needed to re-learn how it should feel when my limb was in the right position.

How the hell do I teach my brain how to feel my body again?  ..  ok first things first!…  I need to steady the involuntary movements that were a result of this, so my brain didn’t think they were the ‘normal’ thing to feel for… after searching the internet I found the Sensory Balance Belt.

You can see my initial blog on the Sensory Belt here when I first got it in April.  After 8 months with it.. I can do most of the those games shown in the picture .. without it!  (which is just as well after losing 2 stone it no longer fits me!)

My next purchase to make a big difference was my Passive Trainer Bike,  this is a set of pedals with a motor,  you put your feet on press a button and it starts cycling.. mines does roughly 15 mins between 158-162 calories per go… so suddenly I could 30 mins in morning,  30 mins at night and burn around 600cals (500cals a day deficit to lose 1 lb a week)


The Rollator I bought in January is also much easier to use.. the shaky movements are still there.. I still can’t use crutches without the weighted splints to keep arms and hands steady enough to not let go.. and still we’re only talking a few steps with human assistance too.. they only get used to get into brothers house usually when he’s walking behind me.. the steps are still shaky..  but I can still use them.. and it keeps open for me places I can’t get in with the wheelchair.. ie pub toilets in a yorkshire village are narrow and not at all designed to fit a wheelchair in.. even a few shaky steps from toilet door to loo makes a difference!

My routine didn’t just end with lifting arms and legs in the air whilst laid on my back!….. once the balance belt arrived I did exercises from sitting at first on sofa so couldnt fall far back,  lifting legs,  lifting arms,  gripping things,  building up time I could grip things before the intention tremor took over.. which is handy to know how long you got before the shake kicks in, when your trying to pick up a pan or get something out of the oven,  move a tray or plate full of food from kitchen unit to rollator seat to push into lounge!

I got weighted cutlery to help and some forearms splints.. wearing them with the metal side on top for some jobs steadies the bottom of arm and hand and also stops fingers been able to flex so much that I let go of stuff.

with the metal part on top, it acts in a similar way to someone placing their hand on yours to steady it

Sometimes I’d even have ankle weights higher up arm,  with arm splint too, then I’d play games on the Wii for targeting practice,  after months of practising with both on I’d swap splints and heavier weights for lighter wristweights.. now I had to keep my hand from flexing myself.. keep hold of the wii remote and aim on the screen.

With the balance belt I’d graduated from sitting on sofa or in chair to sitting on a bean cube (with nothing behind me) at legs to each side,  in front of TV and playing some games. With Wii Fit I’d graduated from needing a walking frame behind me to hold onto to sitting on it without,  first with legs out to side so sat in a W shape on the board,  then with legs crossed in front,  then straight out. …. then with balance belt removed..  so far I’ve reached the ‘sitting in W shape on board’ without belt and getting on and off without falling over (Don’t forget the games involve leaning to left or right to shift weight once you’re on it) … can also shuffle across floor,  get onto sofa,  get on and off bean cube WITHOUT sensory balance belt on.

I can do the slow games where just stand on board (holding onto rollator)  and just lean left or right without the balance belt now.  I can’t yet sit on board with feet out in front and lean left or right consistently without falling over too far .. it might come… it might NEVER happen..  but won’t know unless I keep working on it! … I was thinking of getting another balance belt once I reach my goal weight.. as its also too heavy for my body currently and kind of sits around my hips rather than my waist and its kind of throwing me off again after working so hard to keep my balance!  I hope some time next year to be able to get a smaller size once I reach the weight I want to be, as I will have gone down a few belt sizes!

I got into Pilates and the core body strength exercises,  most can be done from the floor especially on the game Exerbeat,  it worked best for me with 2 wii remotes (you can use only one or just follow a ‘video mode’).

I could also do all the other ‘dance’ games from sitting either in chair or on beancube as it only registers what your arms are doing with the Wiimotes! …  these were great for arm co-ordination and control.

An unexpected side effect was the weight loss, when I discovered by chance that I was burning more than I thought just getting through the day, but was eating way too many carbs and calories.. enough to keep me at 12st 7!… so I dropped the processed carbs,  reduced calories to 1200 and made my body make its own energy from other food sources (ie protein,  complex carbs in vegetables etc) and dropped 2 stone! (28 lbs for my american friends!)

I also found with more control over arms I could do more vigorous games like boxercise ( I still need the weights on to keep steady enough to do the faster paced games) but that also helped increase my stamina,  strength and found out quite by accident (after a few sleepless nights when I’d got up at 5am to exercise cos I was bored and couldn’t get back to sleep!)  that if I exercised first thing,  it seemed to kind of tire my muscles a little… not enough so I was too tired to do anything the rest of the day, but enough to reduce the amount of extra involuntary movements I was getting.. suddenly I could so some things again without needing weights on arms.. typing.. hitting smaller buttons on remote without having to hold pen in mouth to press them!

It’s been a long journey but 8 months since I started with balance belt.. laying on the floor.. rediscovering how my body worked.. I no longer feel like I’m waking up in someone else’s body! .. I’m not cured.. by a long way…  but I still have functional use of my arms.. enough to stay independent.. even if I do still need weights to do some stuff… thoughts of needing switches and scanning and eye gaze computers have dissipated and been replaced with a new found enthusiasm and appreciation of how my body works and what I can still do 8 years after onset of a condition that no-one knew the prognosis for!