Nigel Davis was diagnosed with idiopathic spino-cerebellar ataxia (SCA with an unknown cause) when he was 17, back in 1980 when very little was known about the condition. Nigel was able to largely manage his condition for quite some time but after teaching for 19 years, he was forced to retire.
Ataxia! What’s that?
“Growing up, I was told that I was just clumsy and would grow out of it, but I didn’t and over time people recognised that my clumsiness was getting worse. Eventually when I was 17, I was referred to see a Neurologist in the hope that he could help but what he was about to say would change my life. “It’s not MS, it’s a condition known as cerebellar ataxia,” the Neurologist told me and parents in 1980.
“What’s that? We’ve never heard of it!” was our reply. He went on to explain that this is a very rare, degenerative condition that mainly affects balance and mobility. Unfortunately, there was not a lot else known about it, but most disturbingly there was not – and still isn’t – an effective treatment or cure. This did explain my childhood clumsiness; however, I didn’t realise what an influence it would have on my life.
Teaching with ataxia
Although I now knew that I had a neurological condition, I continued on with my life regardless. I didn’t know any other way. At the time, I was studying for my A-Levels, which would lead me onto training for a B.Ed. to become a Primary School Teacher. I was very active, playing a variety of sports and after graduating I began my career teaching Year Four.
I knew that I was still ‘clumsy’ and for no reason at all would sometimes fall over, but this never prevented me from doing anything. The progression of my cerebellar ataxia has been relatively slow, but as time passed I began to notice that I was more unsteady on my feet and falling over more often.
After 19 years teaching, I had the opportunity to take early retirement. That was a difficult thing to have to consider, as I loved my work, but I recognised that my ataxia was making things more difficult. I started to use a walking stick to steady me and did fall more often, especially when tired. After many discussions with family, friends and my neurologist, who told me that my ataxia would not improve but would continue to deteriorate, I came to my decision.
Although that decision was made with a lot of trepidation, I am glad that I did retire. I loved travelling, having been on holidays abroad in Europe, and my retirement has allowed me to travel further and more often.
I travelled on my own for 12 months, visiting many places. Many fellow travelers asked me about my disability, which allowed me to make them aware of ataxia. This love of travel has continued with a six-month trip around South America with my best friend and travel buddy.
Travelling with ataxia is not easy, but despite this, I have been able to have many fantastic adventures such as climbing Machu Picchu and creating ever lasting memories. I like to think that although my ataxia does impact my life, it will not prevent me from achieving the things I want to do. I know I have limits and I may need to adapt my ideas, but I firmly believe if you want to do something, there’s always a way.
I am proud of all that I have achieved and would urge all other people with ataxia to stay determined, be stubborn and follow your dreams. Yes ataxia can be cruel, yes it’s difficult to live with, yes it provides obstacles but it’s amazing what you can do, even if you have some failures along the way: keep trying.