As FA progresses, I am getting more and more fearful about trying to go out for short walks. I know I am putting on weight. I bought a static bike/cross-trainer for that reason. So I am trying to do a bit on that and adapting to do a little more indoors unfortunately! I recently completed a fundraiser – I cycled the equivalent distance from Belfast to Dublin (168km) on the static bike, raising over £7,300.00 for FARA Ireland (to go towards research for Friedreich’s Ataxia).
I still like to try and get into the fresh air. If I do go out for a walk, it tends to be on a Sunday, in a very quiet, flat (!) area.
Ironically I used to be super sporty- I won a lot of cross schools competitions and I won the school cup in P6 for obtaining 7 gold medals.
A few years ago, I tried to run a short distance, and I found that I just could not coordinate
the movement at all. Part of me thought ‘maybe I am really unfit?’, but I soon realised that there was something else going on, I couldn’t even run for a few meters. It was this, combined with having a weird sensation when walking (like I was always going to fall), that led me to go to the doctor and initiate investigations into FA.
I used to take being able to run for granted. Now it’s a case of doing exercise a little differently. My Neuro Physio taught me to focus quite a lot on my ‘core’ as that helps stability, and he also gave me some great advice. He told me that if I am out walking and I start to feel myself falling forward, just to stop. Gather myself, even pretend to look at my phone for a minute, and then start again. It really helps! Obviously getting anywhere takes a lot longer now, and I cannot walk far. But, as they say ‘If you don’t use it, you will lose it!’
– Clare
