Hey everyone, my name is Lake. I am 38 years old. I live in San Antonio (for now, I like to move around). I do call Kansas City my home since I was there for most of my life. I was diagnosed with Friedreich's Ataxia 16 years ago. It all started when I was in college and I wanted to ride my bike on some of the dirt trails. It’s hard to describe the feeling to others without FA (but you know what I’m talking about) of knowing in your mind how to do something, but your body is saying no. Shortly after that I went to a neurologist who ran a gamut of tests; MRI, CAT scan, blood work, EMG (my personal favorite) and a spinal tap.
Nothing. Nada. As far as he could tell by the results I was healthy, but from what he was seeing and hearing from me, he wanted a second opinion. He sent me to another neurologist, from one look at how I walked and what I described; he had me do a new DNA test that had just come out. I was tested for Charcot-Marie-Tooth disease (CMT) and Friedreich’s Ataxia (FA). The result came back that I, unfortunately, had FA. My first question was “How do I get rid of it?” The answer from the neurologist, currently there is no treatment or cure, was clearly something I didn’t understand.