Adrian McBreen was diagnosed with acquired ataxia at age 3. While he is originally from Ireland, he now lives and works in England. In his spare time, he joins many ataxia-related events and is brave enough to go skydiving. Adrian also loves to write and has already made a start on his first novel.
I was diagnosed with Acquired Ataxia when I was 13 years old some months after an encephalitis virus conquered my cerebellum. I’m 39 now. Back then (1995) I had to learn to walk again and then reached this “plateau” a few years later. Around that time, my original illness was seen as part of the Epstein-Barr virus after my Hodgkin’s lymphoma came along. As my ataxia came from nowhere and completely ‘out of the blue,’ with no history, it isn’t genetic so no one in my family is affected.
Before the virus, I had a “normal” childhood. It is so long ago now that I have become used to walking like a raging alcoholic every day. I was in my first year at a boarding school at the time, so I took a year out and worked on various therapies (physiotherapy, speech therapy, OT) in a pretty intense exercise program until I improved and gained maybe ninety percent of my motor function back.
I’m Irish originally and get back home a few times every year or as much as possible. I now live in Windsor, UK. I write short stories and I’m working on a longer piece, which begins with ‘n’ and rhymes with hovel. I enjoy traveling around Europe and elsewhere when I can. I listen to a lot of music – electro, pop, soundtrack scores, classical, hip-hop, R&B, the list goes on and on. I use iTunes, Spotify, YouTube, and even the humble radio at times to listen. I read a lot of books (mostly American/Irish/British fiction) and watch comedy or drama online.
The best treatment I find that helps me is exercise, a good and balanced diet, and Pilates classes every now and then. My disability has taught me never to judge a book by its cover really. I’ve learned to be adaptable and flexible as major life changes can happen anytime. I’ve done sponsored skydives for Ataxia Ireland and for Ataxia UK with friends. I’ve done wobbly Bridge and Park walks in London on Ataxia Awareness Day in September; I try to attend NAF and Ataxia UK conferences.
Ataxia is one huge and complex condition that affects people in very different ways. The view from my plateau can be nice but, more often than not these days, it gets pretty bleak. Sometimes I feel like a bit of a fraud in the ataxia world because I look “normal” from the outside. I’m no neurologist and modern medicine may well be fantastic at the moment but I feel like the brain is still one huge mystery for science. My piece of advice would be to join a local support group to get as much advice and help from people on the ground as possible.
Thank you Adrian McBreen for sharing your story. We can’t wait to hear more about your first novel and wish you good luck writing it!
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