I wrote this to try and help friends and family understand about how the condition affects us. It has been posted in the neurological e-journal ACNR and on the AUK website.
Ataxia
You’d probably blame it on the drink
The first time that you see it,
But, despite what you may think,
If you did not know the facts here,
This clumsy incoordination is, in fact, Ataxia.
We are an ‘average’ football match attendance number;
We’re proud of our crowd.
We couldn’t kick a ball to save our lives,
Or catch it, or sign it,
Or, for some, to even see it’s there.
And this is a condition
Not much like anything else:
Inherited, genetic; acquired, or simply not yet known,
We met it first on our journeys of
Breaking families and marriages,
Eroding friendships and careers.
Where hope - and humour - grows and thrives
In the highs and lows of ordinary lives
And in all the living in between,
The truest test of temperament, or faith,
Or whatever Star you look up to,
Will take our crowd to stand up, cheering,
And state a fondness still for fun.
Slurred speech and choking.
Blurred sight.
The risk of trips and falls.
The struggle with the stairs.
Further down the line,
A choice of sticks or chairs.
Of carers or sharers,
Of coping and hoping;
Of special understanding mates;
But not, in all likeliness,
Of those that lead to dates.
Brain fog, vision loss, hearing loss,
Vertigo, migraine;
Heart problems, bladder problems,
The list goes on again.
Sister, brother; father, mother;
Uncles, aunts, nephews, nieces;
Neighbours, colleagues, friends and lovers,
Pals in pieces
Coping with a blighted life,
Each day shaped by this clumsiness and incoordination
Which now, in reading this,
You can only really guess at, I guess.
Google it. Ataxia.
You do this when you haven’t answers,
And what you have is rare.
They are searching for a cure
Through cutting edge neurology
And science breakthroughs - soon. For sure.
Remember this - stand up for us;
We find this harder still.
Match our will with your Will.
Sense our needs and wishes;
It’s easier than it seems.
But most of all, the thing we want
Is your recognition of our dreams.