Name: Joe TylerAge: 42
Where do you call home? St. Louis, Missouri
What is your education? How will FA add to your future? B.S. in Economics and Finance from Saint Louis University (GO BILLIKENS!)
Who do you live with? I live with my wife, Karen, and dog, Skiff, and cat, Hobie, in Soulard, which is south St. Louis. We have a two-unit building. We live on the first floor, and it has a ramp! The second unit is on the 2nd and 3rd floor, and we Airbnb that unit.
What's a typical day for you? A typical day for me varies. In 2023, I logged 29 round trip flights — primarily for work. Whether I am home or on the road, I start the day around 5:30 a.m. and get a light workout in — either stretching and a 15-minute row or both. I am usually working from 8 a.m. until the early afternoon. I then try and get a second workout in, then do a little more work. When I am home my wife loves to cook, so I get some awesome home cooking for dinner or go out for a bite. On weekends, we usually are out in the neighborhood at a Billikens basketball game or watching IndyCar!
How long have you known you are living with FA? When and how were you diagnosed? I was officially diagnosed with FA when I was 30 but was misdiagnosed for 6+ years prior. So, I started showing symptoms when I was in my early 20s Are there any others with FA in your family? My only brother Ben, who is three years younger than me, also has FA.
Describe your transition from walking to a walker/wheelchair. Transitioning to a mobility device was at first very difficult, mainly mental because I was concerned about my appearance and thought I was weak for using a mobility device. In hindsight, I find this extremely funny because I recognize my imposter syndrome.
In my mid 30s, I realized it was okay to use mobility devices, in fact, it enhances our lives! It has sort of flipped 180 degrees because now I am proud to use the devices in public — say going to basketball games or even restaurants. If I didn't use mobility devices, I couldn't attend those great life events!
What do you like to do to stay active and what type of exercises work for you to stay strong? Exercise and activity are passions of mine. Some would say it is one of my core values. As someone with FA, I can't get out and go on long walks, but I can ride the recumbent bike (stationary or Catrike) or use my Hydrow and row. I also set up an exercise room in my home with weights and a cable machine, so I get in strength training 5+ days per week. Our muscles atrophy so quick, so anything I can do physically I do.
Do you have any hobbies or special interests? My hobbies are exercise, spending time with Karen and the fur babies... and watching IndyCar!
When FA gets you down, what do you think/do to feel better? FA gets us all down, but spending time with friends and family makes it easier.
What is one way living with FA has POSITIVELY affected your life? FA has made me a better person because I fight for things in spite of FA. I want to be equal, so I work hard BECAUSE I have FA.
What is a favorite motivational quote of yours? "It's not how we fall, it's how we get back up."
What is a piece of advice that someone with FA has given you that encourages and inspires you? Someone with FA said to “live life without regrets.” That's always stuck with me.
"I have FA but FA doesn't have me." What does this statement mean to you? It means to me that I need to live. FA will not stop me from living a full life.
Interviewed by
