Read Brianne's Story

“… The world keeps spinning, life keeps changing, and I’ll enjoy each moment as it comes.”

My outlook on life has changed quite drastically because of Friedreich’s Ataxia. I live life for today; for this very moment. Not for yesterday, that’s done.  Not for tomorrow either, that’s not looking too bright. I make an effort to get the most out of each moment.

Let’s backtrack a bit… my kindergarten teacher noticed that I was “different” than the other kids.  Different being that I sat down a lot instead of doing the standard kindergarten thing; I didn’t play to exhaustion like all the other kids.  I went through elementary school with everyone thinking I had a balance problem, because that is what I understood, and told them.  The doctors had no idea why.  I was finally diagnosed at about 10, after years of seemingly pointless testing. Now I’m 30, and I’m happy to say that I live on my own, I have my own apartment and my own car, just like everyone else.  I have also experienced various sports, extreme sports you could say.     

I continue to struggle against my FA, and enjoy doing it. Why should I sit back and make it easy for FA to run its course? I take an adaptive PE class twice a week, do hippotherapy (horseback riding) every other week, go swimming once a week (when it’s warm enough) and go to the gym whenever I can.  This is my weekly routine. 

On the more extreme side of things, I snow ski each winter, I go camping, rafting, and skydiving numerous times in the summer.  I’ve been parasailing, and this summer I am going to try paragliding. Parasailing is parachuting behind a boat, paragliding is off a mountain.

I may be stuck in a powerchair, I may require a lift to get around my apartment, I may need a speech amplifier and hearing aids, but the world keeps spinning, life keeps changing, and I’ll enjoy each moment as it comes.