Before being diagnosed with Friedreich’s Ataxia back in 2001, doctors put the way I walk and my clumsy behaviour down to a developmental coordination disorder called Dyspraxia. I received a lot of one-to-one physio for that to try and improve parts of my movement that were worse than other nine year olds (such as balance). I remember this one room, which was a bit like a soft play area, where I would go through a series of exercises. However when the experts discovered my condition was far more severe than first thought, my weekly exercise sessions came to an end. My physiotherapists argued that I should now save energy for daily activities.
My family and I always accepted that as the truth. We trusted the physios and thought they must know best. It emerged they did not. Speaking to specialist doctors in recent years, it has become clear that exercise and ‘using before losing’ is a key weapon in the battle against Friedreich’s Ataxia. The condition is incurable but I feel physiotherapy would have slowed down my deterioration. Maybe I would have been able to walk for a year longer if the physio sessions had continued all them years ago.
One thing is for sure; I now exercise quite a bit. It may be too late in terms of walking but staying fit definitely helps me in life. Doing weights at the gym has made my upper body stronger, which helps with transfers. When you’re in a wheelchair, it is quite easy to think the legs don’t matter but keeping movement (even if it is only a little amount) is so important. I use the power plate, do leg stretches and stand in the water so that the muscles still work. It does make me tired but if I stopped exercising, I might as well give up on life and accept that Friedreich’s Ataxia has won.