I was diagnosed with Friedreich’s Ataxia at the age of 44, after experiencing symptoms for a couple of years. I am now 47.
I am very fortunate to still be walking. Most people have never heard of Friedreich’s Ataxia. Personally, the only way I can describe it is that, with every step, I feel as though I am going to fall. You have to really concentrate all the time, so unfortunately that means I am thinking about it constantly. It also means your body can become very tense, and I frequently get a sore neck.
People are always surprised that I wear heels or wedges! I think people (including me!) assume I would be able to walk better in trainers or flat shoes. I asked my neuro physio about this (I know I’ve spoken about him before, but he was amazing!), and he totally understood. He said that because I always feel as though I am going to fall, I would rather fall forwards than backwards (and hit my head), so it gives me a feeling of safety. He explained that toddlers with Cerebral Palsy often totter while tilted forward for the same reason — they would rather fall forwards.
It is good to understand these things — anything that makes mobility a bit easier!
