I am at a stage in my acceptance of Friedreich’s Ataxia, where I am not always looking for a cure (although, this would be handy!). Rather, if something pops up in my life, which may better my wellbeing, I jump at it. For example, I have started doing a form of physical therapy called Bobath. It is by no means a cure for FA, but it might just get my body moving more effectively. This may mean a decrease in falls & pain. No, it’s not a cure, but it’s definitely a win.
I was a happy, healthy child living on the Gold Coast, Australia when my sister, who is 18 months older than me, started having trouble walking. We would regularly walk the few blocks from our house to the Broadwater and her unsteady gait became more and more obvious. My mum, determined to get to the bottom of it, took her to several doctors. When I was 10 years old the diagnosis was confirmed and my parents were devastated.
Neils Bohr, a Danish physicist, is reputed to have said “It’s difficult to make predictions, especially about the future”. He was one of the smartest men to ever have lived. I guess he had an enormous respect for weathermen!
Well for us FAers, predictions are what we seek most in the world. It’s not hard to find out the list of things that’ll go wrong with us. What is hard though is getting an idea of when.
I’m not a scientist, nor a medical researcher. I’m just a normal FAer. I was invited to the Symposium as part of a Patients Panel – a Q&A session for researchers who might work in a lab and might interact only with FA cells, to meet and understand real FAers, the people who’ll benefit most directly from their work.