The affects of ataxia – Ataxia

The affects of ataxia

The affects of ataxia

In part one of Adrian’s story, he talks about early signs of ataxia and its affect on his career and life.

In late 2016 I went to the doctor because my wife had noticed me losing my balance and tripping over a lot. The doctor had me perform several exercises and when it came to trying to walk, heel-to toe in a straight line, I just fell sideways! It was then that I realised something was wrong. I was referred to neurology for a scan and by December 2016 I had the results showing atrophy of the cerebellum – ataxia. 

I had worked in retail for 15 years up to that point and spent most weekends travelling up and down the country playing gigs with my band, Neverland. Neverland had enjoyed considerable success in the early nineties and was on the verge of signing a record deal when I pulled out. My decision was a major upset because I was the lead singer, guitarist and songwriter. So, we all went our separate ways which meant me moving away and getting a ‘proper job’ to support my young family.  

In 2004, after a few years of letting the dust settle, we decided to reform the band for a one-off show. Tickets sold out in a few days so we booked a second night which also sold out and I think I got bitten by the bug of enjoying playing live so we continued, playing the UK and Europe on a regular basis. 

Early signs of ataxia probably became clear in 2015. I was struggling with my day job which I had enjoyed but was finding every day to be a challenge – I was very tired all the time and had lost my enthusiasm. From the moment I got to the store I would count the hours to when I could go home. I had always been dedicated and hardworking but I simply couldn’t find the effort to do the most basic tasks. I would just spend the days standing on the sales floor wishing I could sit down.  I had also begun to complain to the guys in the band that I was tired and perhaps we should take a year off but the gigs kept coming so I kept playing them. In hindsight, I can see subtle changes such as my tendency to play things badly or struggle with my singing that were most likely caused by ataxia, but I would put them down to lack of practice (although I had been playing some of those songs most of my adult life and didn’t even need to think about practicing them). 

There is one occasion that I think was the most obvious sign of something being wrong: we were in Austria and I lost my balance, hurting my ankle (it later turned out to be fractured). Even though I pressed on with the gigs, I was in a lot of pain and feeling really quite miserable. I remember being on stage and thinking “I am really not enjoying this anymore”. I suppose that had we known the last gig I played was going to be my final gig, we would have made more of it but I am glad it passed uneventfully at least.  

In part two of my ataxia story, I’ll talk about my love of music from a young age, my two albums and living with ataxia. 

 

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