Coping with the involuntary movements

I seem to have most difficulty with the involuntary movements in my arms this last year and its been a steep learning curve. 

Many with Ataxia seem to have a constant tremor more like parkinsons so I haven't met anyone else with my type. Its looking most like Progressive Myoclonic Ataxia now the involuntary movements in arms have become more obvious over the last year. 

I contacted the Epilepsy association as Myoclonus is related to epilepsy and I have an history of it.  The drugs I was on to control the fits at the time.. two are no longer used in UK due to long term side effects,  all off them had Ataxia as a side effect even the 'safer' one! 

I didn't know once Epilepsy had gone away it could come back in a different form and it seems thats what Myoclonic muscle movements are, its not the same as when you jump out of your skin as you are falling asleep sometimes these are sometimes constant even when resting, and other times they come and go in 'attacks' of muscle spasms.

Combined with jerky movements from ataxia when I try to consciously do anything,  it can resemble athetosis (like CP where they cant stop moving)  or Huntingdon's Chorea (which has been ruled out thankfully). 

At first remaining independant seemed an impossible task,  but discovering a few simple tricks has helped. I mention these as they may help people with other types of ataxia,  although I'm not sure about a constant tremor. 

• Keeping arms close to body helps, so a lap tray to do jobs with arms tucked in makes arms less shaky than trying to reach forward onto a worktop that's higher than the chair. 

• Cushions under arms help though that's difficult at a desk,  I type better laid semi reclined in bed with bed cover supporting arm and an external keyboard on my lap.  I'm hoping to get a chair that tilts soon so I can try the same trick with computer in office. 

• Been higher than the worktop helps I found this out by coincidence when I had demo in a standing chair last october,  I am hoping to be able to get one of these to help with doing jobs around the house.  A chair with a seat riser may also help this. 

• weight on arms help - I use weighted wristbands as I find splints too restrictive and I can still use hands if I can keep them steady enough. I find them most helpful with activities where I can't keep arms by side like when doing exercises on Wii and controlling overshoot when going to reach for joystick on desk etc for lots of typing.

• I use weighted cutlery and a weighted mug with lid on when its just me here.  If someone coming for cuppa I slip wrist weights on use a normal mug but only fill it half full with tea and let them carry it into other room!

• Thermos mugs have a little more weight than regular mugs and keep drinks warmer for longer.  Adding a straw (and lid) stops me spilling it over myself in bed and keeps drinks warmer until I finished them to save me having to get back up and zap them in microwave.  

I have also noticed it more in my trunk muscles despite doing exercises regularly for core muscle strength.  I can do the exercises on the floor easily.. the floor is supporting my body.. sitting up right in a chair and keeping balance whilst trying to use arms to do things is another matter though and I quickly tire and have to go lie down again so body has full support of the bed for a while. 

I'm currently waiting for re-assessment by wheelchair services to see if can get a chair with better trunk support and tilt so I can sit and rest in one chair for a longer period.   I have noticed an increase in falls between transfers and recently had one fall after another injuring ankle,  pulled side muscles,  shoulder and neck the last month. 

Overall its been a frustrating few months with electrical things breaking down too and having hearing/speech impairments on top of all that so even making phone calls,  communicating with engineers etc.. having to wait all day for them to turn up has been exhausting..  and a real test of endurance.. but I got there in the end and I did it independently which does give me a great feeling of satisfaction despite the struggle it took to achieve it!

Time for a rest now to preserve some energy for Inca's second walk later today and she has my dryer to empty for me later!!