Name: Josh Wooten
Age: 29
Where do you call home? Atlantic Beach, Florida (Jacksonville) – Go Jags!
What is a current goal you have with your education? How will FA add to your future? I have a bachelor’s degree in accounting from UNF (University of North Florida). I am currently employed as a spokesperson for Biogen and hope to do more with this in the coming year. Right now, I travel to different cities to talk to others who have FA and their families. FA has strongly influenced my career path by highlighting the importance of patient advocacy, awareness, and research. FA has motivated me to become a FARA Ambassador and do as much as I can for myself and others living with FA in hope of finding a cure.
Who do you live with? I live independently with my girlfriend and our dog in a renovated garage apartment at my parent’s home that is fully accessible.
What’s a typical day for you? I get up and shower, and then I walk my dog. I check my stocks, watch TV, and play video games with friends online. I walk my dog again in the afternoon, or my girlfriend and I take the dog to the dog park close by. I eat dinner and watch TV or a movie with my family, then go to bed. I also do public speaking for Biogen and occasionally travel to give talks to other people with FA and their families. On days I don’t have physical therapy, I exercise and stretch for at least an hour.
How long have you known you are living with FA? When and how were you diagnosed? I have been living with FA for 19 years. I was diagnosed at age 10 after I failed my reflex test at my annual doctor’s visit. I was diagnosed by a neurologist at the University of Florida through genetic testing.
Are there any others with FA in your family? No
Describe your transition from walking to walker/wheelchair. Walking became more difficult for me around middle school. I started having significant balance issues in early high school and started using a walker around this time. I also got my first service dog, Boulder, when I was 15. He was the best! When I graduated at age 18, I attended Santa Fe College in Gainesville, which has a very hilly campus. I could not navigate the hills with a walker so I transitioned to a power chair shortly after turning 18, and I have been using a wheelchair since then.
What do you like to do to stay active and what type of exercises work for you to stay strong? I love being outdoors and walking my dog. I also go to physical therapy and do some exercises at home, like stretching my feet, leg lifts, and standing.
Do you have any hobbies or special interests? I enjoy spending time with my girlfriend and our dog, visiting the Jacksonville Zoo, staying up with current events, watching movies, and playing video games with my friends.
What is a good trick to make daily life easier? Focus on the good and don’t give up. When things get hard, try harder.
When FA gets you down, what do you think/do to feel better? Meditating outdoors, meeting new people, and talking to them about their life and what they have been through.
What is one way living with FA has POSITIVELY affected your life? I have been able to meet so many amazing people and have had so many unique experiences! My neurologist Dr. Subramony and the researchers at UF, like Dr. Byrne and Dr. Corti, truly make me feel special. I have also met so many friends with FA, and we all look out for each other. I also get to the front of the line at amusement parks and handicapped parking! As for unique experiences, I have been skiing, swimming with sharks, and sky diving. More to come…
What is a favorite motivational quote of yours? “Never forget what you are. The rest of the world will not. Wear it like armor, so it can never be used against you.”
What is a piece of advice that someone with FA has given you that encourages and inspires you? Never give up.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Everybody has good days and bad days, but tomorrow is a new day and the sun will come up again. Laugh at yourself, love yourself, and be yourself as if no one is watching. When there is a will, there is a way.
What is the first thing you want to do when a cure/treatment to FA is found? I want to walk again.
“I have FA but FA doesn’t have me.” What does this statement mean to you? FA doesn’t define me.
How do you live your life in the face of adversity? I take each day as it comes, and I never give up.
How did your diagnosis impact your friendships and relationships? I grew up playing sports and when I could no longer be as active, a lot of my friendships ended. I think some of my friends had a difficult time relating to me, and I them, and felt uncomfortable with my disability. But I was fortunate to make two really close friends in high school that have stood by me all of these years.
What do you wish the general public understood about FA or disabilities? I think the biggest thing I wish people understood is that the little things are hard. Reaching for a glass of water, picking up my phone when I drop it, and just getting in and out of my wheelchair is a struggle.
Has FA had an influence on your course of study or work? If so, in what way? Oh yes. I was always very active and wanted to be a Marine when I was little. Needless to say, that was not possible. I had to choose a career for practical purposes and not for “passion,” but so do a lot of people that don’t have disabilities, so I don’t sulk about that too much.
Are there any modifications that have made it easier for you to pursue your education or work in your job? I worked remotely for five years as an HRIS Analyst, so being able to work from home was huge, as I could accommodate myself as needed. I use speech to text and Chatgpt a lot for writing, as keyboarding has become more difficult and time consuming. I also have an automatic front door, bidet (everyone should have one!), roll in shower with bench, and a pole next to my bed for transferring and standing for dressing.
What is your favorite part of your education or work/career? I love my current job as a spoke person for Biogen because I get to talk with other FAers and their families about what they struggle with and how they overcome them. I also love just getting to know them and traveling to different places.
What is your favorite hobby? How long have you had your hobby/special interest and why is it important to you? I grew up playing video games. My grandmother got me into them. They allow me to escape reality and play with friends as if I don’t have FA.
What is your favorite movie or book? My favorite movie is probably Lord of the Rings: The Fellowship of the Ring.
If you could live anywhere in the world, where would it be and why? Anywhere on the Florida coast. I don’t like the cold, but I love the ocean – besides the pan handle.
Do you prefer staying up late or waking up early? I am more of a mid-day person, but it depends on what the next day holds.
Interview by
Mary Nadon Scott
Edited by
Noah Griffith