My battle with Ataxia: rare condition won’t rob me of my independence

STAYING INDEPENDENT: Sam Carson

STAYING INDEPENDENT: Sam Carson

First published in News by

HE’S been barred from pubs because security staff wrongly assumed he was drunk.

Now Sam Carson always carries a card which explains that he suffers with a rare neurological condition called ataxia which affects his balance and speech.

Sam, who is 35 and lives independently in Wallisdown, was diagnosed in 2008, although he believes it was brought on by a brain tumour which he had removed when he was five.

“I could never walk in a straight line and I got wobbly when I was tired, but ever since I turned 27 it’s been much worse.

“Now I have to use a white support cane because my sight is affected, as well as my co-ordination and motor control.

“My lack of balance causes me no end of problems – especially with the pavements in the state they are!

"I like to walk fast as I am under the impression this creates friction and helps me balance. I once described this like riding a bike, stop and you fall off.”

But Sam has refused to have a mobility scooter as he wants to retain as much independence as possible.

He also swims a mile every day at his local swimming pool to keep himself fit.

“People with ataxia tend to have trouble with speech so everything can take three times longer which can give the impression that they are not very clever which you soon find out isn’t true when you start talking to them.

“Fatigue is also a problem I have fought against all my life, and is why I can be seen yawning first thing in the morning – it’s not because I’ve pulled an all-nighter, not these days anyway. I gave up alcohol when I was diagnosed with ataxia.”

Sam knows that ataxia is a progressive condition, although it affects people in different ways, there is also support available.

Sam is supported by the Dorset Blind Assocaition.

“It takes me a while to focus but I can see less and less the further away things are – in the past I’ve got on the wrong bus.

“The cold has always affected me too, I remember when I was about 15 my hands used to go completely white.

“These days the cold does make my legs seize up but I just have a stretch and they tend to be okay.

“I still fall over though, most of the time I manage to save myself, but as you may be able to see from the scars on my face – not always!”

But Sam is determined to stay independent for as long as possible.

“I don’t want a carer because I want to do as much for myself as I can – I believe that if you don’t use it you lose it.”

  • Ataxia is a rare condition affecting around 10,000 people in the UK. There are more than 60 types. For more information, visit website ataxia.org.uk or contact the Dorset Blind Association on 01202 712865.

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