Carl, in his blog post explains his ataxia journey.
I didn’t realise I had ataxia, in fact, until a couple of years ago, when I started to experience some problems with my balance. Since then, I’ve seen a number of doctors and consultants and have had a string of tests at different hospitals. Until it was first mentioned to me in relation to my balance problems, I had never even heard of the word ataxia.
I have been diagnosed as having a form of ataxia called Progressive Cerebellar Syndrome, which affects balance, speech and co-ordination. I’m still waiting for the exact type to be identified by the neurologists.
I think of ataxia as a volcano that lies dormant inside of someone’s body for most of their life. When I got to the age of 29, it started to erupt. Fortunately, with the help of a neuro-physiotherapist, I’ve slowly steadied its effects and controlled the eruptions. I used to call it Bad Balance Syndrome as it is my balance that gets most affected by the condition.
Ataxia is a rare condition, and I would like to help anyone with a similar condition and who may feel like life is over or simply wishes to compare or share experiences. Because it is certainly not over. There is still so much you can do, and the places and cultures you can experience are unlimited. The world is a wonderful place and there is so much to see and so many things to do.
Over the last three years, it has been noticeably getting worse. It began at 32 years old, when one night I bizarrely fell out of bed and the following morning could not remember a thing about what had happened, except for pulling my bed linen back onto the bed.
Before this moment, I had been leading a bright, eventful life. I’d worked in a variety of schools and kids’ camps, both in the United States and England. I’d travelled pretty much all over the world and life was good. Spinocerebellar ataxia doesn’t stop you enjoying life, but it changes how you live profoundly.
You need to plan more, keep a track of your medical appointments. Simple things are more of a challenge; they take longer. But with planning and an adventurous spirit, there’s still a world to see and plenty to do.
Sometimes I feel, when I jolt forward and my forearms go up, like a T. Rex. Perhaps it has something do with watching Jurassic Park at nine or ten years of age. Spinocerebellar ataxia means your body no longer does precisely what you want it to do. It’s an odd feeling and it takes some time getting used to.
Occasionally when walking, I have the feeling of being drunk, perhaps because I see other people’s reactions to me moving unsteadily. I now walk with two Nordic Walking Poles (recommended by a neuro-physiotherapist), giving me a much more secure, measured step, which will hopefully put a stop to that.
On the whole, I try not to think about having an unsteady walk and often it works. But there are always the other times. I will see people in their seventies, or even eighties, walking past me. That’s not a great feeling to be honest. I often think to myself I am not even half their age and they’re walking faster than me.
Hearing laughter as I slowly walk past a group of adolescents is another thing that feels bad or hearing the muttered word “clumsy”. I would like to say something but there’s no arguing with ignorance. In any event, as the saying goes, it says a lot more about them than it does me.
No, it’s not easy at times living with Spinocerebellar ataxia. But I always remind myself that there are many millions of people around the world far worse off than me. You cannot always control what issues life deals you, but you can control how you react to them.
Just yesterday, I thought to myself five years ago I had never heard of Cerebellar ataxia; now not a day goes by without me thinking about it. Strange that.
Just over a year ago, I was crossing the road when I fell headfirst into the middle of the road. Luckily there was no nearby traffic and the thing that was hurt most was my dignity. I picked myself up and wobbled home.
This year as the ataxia has progressed, I haven’t been able to go anywhere by myself with my mum and her partner driving me wherever I need to go. I’ve been using an exercise bike, walking as much as I can and doing leg raises (or leg lifts) to keep the lower half strong and flexible. I don’t like sitting down too much; often my legs move up and down when I do.
Over the last 12 months, my speech has gotten worse, so I now have a speech and language therapist come to the house. In one recent session, she suggested having a tiny video camera put down my nostril to view behind the tongue. We tried it and it looked similar to the alien in the Aliens movies. Not a pretty sight, but anything that helps is worth it.
Now I am unable to walk, and I speak only a little. However, I am adjusting to this new challenge in a determined fashion, and I consider myself to be very lucky, not least because I am surrounded by family who are there to help whatever I need.
The very latest news, after receiving some test results, is that the cause of my Cerebellar ataxia is a mitochondrial DNA issue due to a POLG gene disorder which causes the symptoms I experience.
Watch Carl’s ‘Life with Ataxia‘ video.
Check out Carl’s book!
