FA and balance… it’s complicated

Balance deficit is often one of the first signals that something’s awry and leads to doctor’s visits, referral to a neurologist and eventually diagnosis for someone with FA.

We’re told that balance is so important that through evolution, humans have developed three separate systems that help with it. Each of these, separately, deteriorates in FA.

The first is proprioception, the ability for the mind to imagine where a limb is, in space. It’s what enables humans to walk without looking at their feet, to put their feet on the correct pedal when driving etc. Proprioception is so important that when Mirella Dottori had to select what cells she’d work with when exploring if FA damage could be reversed through gene therapy, she chose to investigate on proprioceptor cells.

The second is the vestibular system, three connected, liquid-filled rings in the inner ear that tell the brain which way up you are. From what physiotherapists have told me over the years, the best thing for this is maintenance. Workout, rinse, repeat.

The third is sight. I remember being once in a cave so deep they told us we’d experience total darkness when they turned off the lights. We did and it was extraordinary. I wasn’t the only person glad to have braced myself beforehand. It’s disorienting and unexpected, especially for people who normally don’t have balance issues at all.

I’d like to posit another: psychology. I had an experience a short while back that left me shaken. It was a specific problem that I found an answer to, but it had put my whole routine out of whack and it took a while to recover from. I’d feel unbalanced, uncomfortable, even in totally separate situations. For this though, I did find a solution: compartmentalisation. I found that I could condition my thinking by taking a moment to recognise the individuality of any particular situation.

Discombobulation is a wonderful word but not a pleasant feeling. But I’m in charge of my situational awareness and with discipline and self-imposed calm, I can beat it.

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