Neil Casey was relieved to find out ataxia is the condition that had been troubling him for a long time, then he became a volunteer for Ataxia UK.
I’m Neil, one of the facilitators for All About Ataxia (AAA). I was diagnosed with ataxia in December 2017. At last, I had been given a diagnosis, a name to what was troubling me, affecting my day-to-day life for a very long time. At first I was relieved – the neuro physio diagnosed me within seconds of walking in the room, in fact, I hadn’t even managed to make it to the chair in the room, which was a few feet away, and she had given me a diagnosis. I managed to sit down and gather my thoughts ‘Oh’ was my reaction, I was amazed how good she was. ‘What is that?’ I replied. ‘Ataxia, you should have seen me months ago’ she replied.
Then so to the diagnosis, this ataxia, some 40 medical appointments later. Never heard of it, what is it, what can I do about it, what caused it, all these questions I had in my head everything was becoming a blur. This was caused by chemotherapy I had 30 years previous. But how can something from 30 years ago cause this now I questioned. Apparently, it happens. What I clung onto though was being told that at the moment I was going downhill but with work we can level things and keep you on that plateau. That plateau I wanted to stay on. Let’s get to work.
The first thing I did when I got home was, like many of us, to look on the Internet and see what ataxia was, not always a good idea. One of the first things I saw was the Ataxia UK website. This is good I thought, extremely informative. For once I didn’t feel so alone as I had done for all this time. I straight away became a friend of Ataxia UK. I felt that the day had gone quite well for a change.
I became involved in AAA in early 2021, after deciding to volunteer in October 2020. I don’t really see myself as having ‘a role’ as such as a facilitator in AAA, but more being a part of the ataxia family where we are all one. Either because we have ataxia or affected by it.
During the All About Ataxia sessions we have ‘table time’ where we talk about the videos we have seen and anything ataxia-related or sometimes anything not-ataxia related. I see these ‘table time’ sessions as a group of friends who have just met, having an informal chat. They are a great way to say how you feel, what is on your mind and also gain advice from others and give advice to others. We often meet up on Zoom afterwards for a catch up.
I have gained a lot from All About Ataxia and the catch-up sessions and to hear others say that too gives me a great sense of wellbeing and a smile rather than alone feeling. This is one of the reasons I enjoy being a volunteer for Ataxia UK.
I currently do several Zoom classes online, yoga, tai chi, qi Gong and meditation and find all of them very beneficial. As well as doing my own thing, be it yoga or meditation, and also the Internet is very good for classes. I feel that without which I wouldn’t be as good as I am now, staying on that plateau.
Focus on the positives, it’s not what you can’t do, it’s what you can do that’s important.