We FAers must remain always hopeful despite the slings and arrows.
We deal with with coordination and balance issues that get progressively worse over time. As is oft-repeated, there’s been neither a treatment nor a cure proven in trials for FA. But the good news is that there is lots of research happening and a number of promising trials ongoing so we remain hopeful. Anytime you want a pick-me-up, check out FARA’s status chart on current research projects here.
The only thing that has been proven conclusively is that regular, varied exercise has a positive impact, slowing progression. (This claim is based on research done by Sarah Milne in Melbourne and the published paper is here. It’s worthwhile including this as justification in every submission you make to the NDIS or MyAgedCare – regular and varied exercise slows progression and thereby helps you achieve your goals, engage more with your community, function more independently.)
Regular and varied exercise slows progression; nothing has been shown yet to stop it altogether. Despite our best efforts, despite the work we put into getting that exercise, our FA progresses. I’m no psychologist but I propose that approaching life with an optimistic attitude also has a positive impact. It’s a bit circular but go with me here. If I believe in the power of exercise I’ll do it more, and my progression will be slower, so I have greater conviction in that belief etc.
I’ll never get better but I do what I can to slow the rate at which I get worse. That’s a thought I can choose to start each day with. Whether the Dalai Lama said it (as Google tells me but I don’t trust Google as a source) or someone else, it’s a simple mantra: “Choose to be optimistic. It feels better.”