Sunday, 7 January 2018
(to fellow sufferers and those less fortunate than me)
Sometimes it dominates me and I am a clumsy weak oaf
Sometimes it is nothing and I feel graceful and 'whats the fuss about?'
Some people don’t see it, for others it’s ‘poor Jon he can’t run or jump or jar his limbs.’
If I manage it well and live within its limitations, it almost disappears
but if I am in crowded noisy hilly places I lose balance.
If i try and do stuff in a strange place or in a strange way
i might get frustrated with myself and not be able to function.
So what’s different from me and the average 59 year old?
Yes I’m dysfunctional and falling apart like all my peers (whatever their gender).
A piece of paper from a respected medical authority after genetic testing?
Maybe that’s the difference. I am authenticated.
Maybe I am more fortunate than many Ataxia sufferers who have it much worse than me-
I have heard horror stories
but I do know that if you find a way to limit dependence on medication and the medical system and self manage your Ataxia,
and be surrounded with supportive loved ones,life is richer, better and warmer