“You cannot change the cards you are dealt, just how you play the hand” - Randy Pausch
My name is Dave and I live in Grand Rapids, MI. I am 30 and I was diagnosed with FA when I was 26. I was married in August 2014 and we are expecting our first child in September 2015. I am very fortunate to still be able to do most things independently. I am also very fortunate to have a wonderful wife and very supportive family & friends to help with some of the things I cannot do independently.
Growing up I was very athletic and played many different sports. It was not until after high school around age 19 that I was starting to become very clumsy and my body was not able to perform like it had previously. It progressed steadily over the next few years. My issues became a noticeable problem at the age of 23 when I began attending college. People were always asking me “if I was drunk or something”. I was sent to a neurologist at the University of Michigan where he said right away that he suspected FA but we would have to do a genetic test to be sure. I had never heard of FA so I went home to research it. I was shocked at what I found out and couldn’t accept the fact that it could happen to me. So I did not get the genetic test, and tried to hide it for the next three years. I thought if I ignored it, it would go away. By doing this I caused myself a lot of anxiety and depression.
By senior year I had a kyphosis in my cervical spine that required surgery. At that point I had to finally face this head on. I was tired of feeling ashamed and not doing things because I was so worried about what people would think of me. I went back to my neurologist and had the test. Of course it was positive and even though I knew it was coming, the phone call confirming FA still hurt. After having the correct diagnosis, and taking the time to accept it, I decided that my life would not stop that day. I will keep moving forward and continue accomplishing my goals. Focusing on the many things I can do, not the few things I cannot.
In 2012 I graduated from Central Michigan University with a Bachelor’s degree in Clinical Exercise Science, and I am currently working on a Master in Pharmacology and Toxicology from Michigan State University. I am always trying to stay physically active however I can. I love to exercise, and to find new ways to push my body. Sometimes I fall, but I get back up. During my neurologist annual check-up over the last two consecutive years my FARS test scores (the test many neurologists use to keep track of a FA’ers rate of progression) have improved by a few points each visit. I have high hopes for the future and I’m devoted to not letting FA define who I am.
I look forward to what FARA and all the FA research will bring us this year!!! I am honored to be part of the FARA Ambassador Program, and have the opportunity to work with such amazing people.