Me and my ataxia

Peter Wormington writes about his experience with ataxia so far.

I first realised something was wrong when I found the floor rather too sloping after a couple of pints on an empty stomach. That was in 2007 or so, and I was 55. Over the next few years I found myself less able to ski; losing my balance gracefully on simple sections. I also became more clumsy playing cricket: “You played that as if he was Shane Warne!” (a famous Australian bowler). I’d sometimes get to the stage in tennis when all I could do was wave my racket vaguely at the ball, to the hilarity of everyone else!   

After blood tests in 2011 my doctor very astutely observed that I might never get a firm diagnosis. Nearly ten years later, I know he was right! New glasses helped – I had developed a ‘prism’ (the images are no longer aligned) but I was aware that prisms are normally caused by some other underlying issue.   

 That became obvious one evening in 2015 on the way back from the pub with my family. We were walking fast on a warm evening. After a while I started having trouble keeping up, then the right-hand hedge kept veering over to greet me and my speech went…  

This time my doctor referred me urgently, but the consultant seemed quite disappointed when the MRI and lumbar puncture showed no sign of the suspected MS – or any of the inherited ataxias. I was referred to the Neurology department at University College London where I was put through my paces, shown as an interesting specimen to various students and told to come back next year to see what had changed. Nothing had, so I was discharged, with sympathy – and some interest because my symptoms are unusual… I also joined various of the genetic studies.   

The consultant thought the problem is probably something to do with the blood supply to my cerebellum. Exercise, alcohol and caffeine are all triggers. I also sometimes have trouble with my speech at breakfast when my digestion first wakes up. Alcohol or caffeine makes this much worse – one warm summer’s day I came to a second pub after a strenuous uphill climb from a half pint at a first, and realised I should have a tomato juice: “Anything with that?” asked the bartender – “Wooozzzz…wisss…Werses…” was all I could get out for “Worcester sauce” !…she gave me a very funny look: “I’ll just put them on the bar for you to help yourself…”. 

The easiest time to talk about it all with others is when I have to excuse myself – from another drink, caffeine or the wrong sort of exercise. The funny stories help. People are interested because few have heard of ataxia and the brain is fascinating. 

Three years on, I think the ataxia gets very slightly worse each year, particularly my ‘every day’ balance – I manage to lose my balance just turning around. Presumably this is age-related – I am now 69. I can still walk, run, swim and mess about, but I suspect that sometime I will have a fall that causes serious damage – luckily my bones are quite strong because they need to be – it also helps that I know how to fall, although that cannot always save you.

The Ataxia UK forum on ‘Health Unlocked’ is great for encouraging me to maintain my core strength and keep exercising. Above all I feel I’m lucky to have been dealt an illness that is manageable, very interesting and progresses slowly.