.. like a puppet on a string!

I don’t know about anyone else with Ataxia or any other condition that causes involuntary or co-ordination problems but I sometimes feel like a Puppet and someone else is controlling the strings!

I use a oversized Joystick on my computer (see page Me and My Macs for pics) sometimes when I reach out to it,  I’m just about to get there (i think)  and my arms goes off in the other direction or I knock it and cursor goes flying across screen rather than grabbing the handle, luckily its only controlling a mouse cursor and not  a wheelchair.

For my chair I used the yellow foam ball that came with the Joystick Plus,  took out the middle part that screws it to joystick and put the ball on my powerchair joystick.

I found if I just lean my lower arm on it it gives me more control and as control is crucial when you driving alongside a road with incoming traffic I figure its the safest way.  Also easier in winter when you got several pairs of gloves on or big coats than trying to grip the little stick and keep hold of it.  I just lean to that side so weight is on right elbow and lower arm and it steadies it.  This could get painful if you was doing this all day but as I only use the chair as a spare and to get into the small park (with swing gate – scooter too long to go through) I’m never usually in it longer than an hour.   I think If I was in the same electric chair all day I would need to look another way of steering it,  but for now its manageable,  as I cant afford new chair or ‘speciality controls’.

I prefer my scooter and that is easier in a way as I chose one where the wiggle stick thing is pulled towards you to go forwards  so just by resting wrists on handlebars with hands hooked around back I can also hold wiggle stick in position and keep it there,  so consequently I fly around at 6mph overwhere.. lol! I can use thumb which I tend to use when I only want to move a fraction or have to go slower,  or just move the dial down so even pulling wiggle stick right back will only go slowly.  On the chair I can also alter speed so can keep joystick held in full speed position with arm but it wont go that fast if speed is reduced to walking pace (if someone is walking alongside me).

As I can pull myself to standing to walk a few steps with assistance I don’t qualify for an Electric wheelchair off NHS even though I’m surrounded by hills (even my driveway of an adapted bungalow is sloped!)  so if didn’t have my scooter I couldn’t be able to get off estate to shops or to walk Inca as don’t live with family or have a PA,  but they don’t seem to consider a person individual circumstances.

For now I manage so my goal has to be to keep arms and legs working for as long as possible as I see very little help coming if I was dependant on others without it costing me a fortune in wages.

All housework is exercise and therapy as its all using muscles and co-ordination and if I don’t have any jobs to do around house I exercise via wii fit,  it can be exhausting as everything takes longer as you battle your body for control over your arms and legs so you can walk a few steps with your walker or make yourself a cup of tea,  type a blog,  do your laundry,  dress yourself etc

Sometimes it feels easier once you get going and someone said to me that our bodies learn to not use the muscles which are affected, so once you acknowledged those muscles exist by trying to do something with your arm (or leg)  etc your body will try to use them more.

Sometimes I will only use my best hand when having a drink of tea at someone elses house so I don’t spill everything everywhere and embarrass or burn myself or someone else,  but at home I use a thermos cup with a lid on so I can use either hand safely.

‘Necessity is the mother of invention’ someone said that.  can’t remember who or where I seen it recently but its true,  you learn to compensate because you have to and maybe do it more if you live alone and don’t have family around to do things for you.

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One thought on “.. like a puppet on a string!

  1. Kati,
    Maybe due to my lack of coordination,I can’t ride a bike or swim.
    As my hands and feet seem to have a life of their own lol
    Joan

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