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FARAFARA Cure FA

Joe Tyler

Name: Joe Tyler

Age: 33

Where do you call home? Cincinnati, Ohio

Education: BS Finance from Saint Louis University

What is your relationship status? I’m engaged to Karen Ried.

What's a typical day for you? I am an Area Sales Manager for Hogan Truck Leasing. We assist companies with truck leasing needs, alternative financing, maintenance management, etc. My job requires me to regularly visit customer locations, tour our Cincinnati facility, etc.

How long have you known you are living with FA? Diagnosed in 2012, been showing balance issues since 2002.

Are there any others with FA in your family? My brother, Ben (age 30), also has FA. He was diagnosed shortly after me. (He was lucky and able to avoid the electronic nerve conduction studies.)

Describe an adaptation and/or transition you have had to take due to living with FA: I started using a walker in 2012 for longer walks. Now I use it every day at the gym; I use it when I travel; I use it shopping. I also use a cane for short distances, and to let my new customers know that I am not drunk, just blessed with ataxia.

What do you like to do to stay active and what type of exercises work for you to stay strong? I work out at LA fitness in Cincinnati 5 days a week. I’ve been consistent with it since mid 2013. Working on my core and body weight exercises is my focus. I also spend a ½-hour each session on strength training. A couple days a week I use the row machine to bump up my heart rate and get in some cardio. At home, I am fortunate to have Karen make some delicious, nutritious and healthy meals! We eat a lot of home made granola, yogurt, lots of salads, snacks of fruits and avocados...and dinners usually consist of tons of veggies and fish or chicken. This combination of exercise and eating healthy is my personal way of trying to fight FA everyday! (FYI, we do get to cheat and eat a cheeseburger or pizza once a week!)

Do you have any hobbies or special interests? I love our dogs and taking them to dog parks. I love fitness and keeping up with fitness trends. I also love traveling to see all that our world has to offer. I am addicted to CNBC and a big fan of “Squawk Box” and Joe Kernen... and drinking a good Malbec!

What is a good trick to make daily life easier? Be overly confident and smile! Humbleness can help you attack FA...At first I was scared of what people thought of me walking around with a walker, but I quickly learned that a walker makes me feel 100% better when trying to get around, and who cares what others think, I feel awesome!! I also quickly realized that my walker and cane is no different than someone with prescription glasses. I am fortunate to have excellent vision but also have FA, so I have horrible balance and need assistance with walking. Many other people have great balance but horrible eyesight and their assistance are glasses. Everyone has issues that can become a roadblock in your life, treat that roadblock like a speed bump and keep on truckin'!

When FA gets you down, what do you think/do to feel better? I try not to let FA affect me negatively, but just as soon as a negative thought occurs, I immediately think of how fortunate I am to be here on earth, with the ability to help others become happier and enjoy life.

What is one way living with FA has POSITIVELY affected your life? I have a strong determination to succeed. FA has driven that determination further. A challenge in life is just a chance to prove that you are better and can overcome that challenge. FA is a daily reminder that challenges can be beat, that ANYTHING in this world is possible.

What is a favorite motivational quote of yours? “You miss 100% of the shots you never take.”

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Exercise, exercise, exercise! Do whatever you can do to challenge yourself. I guarantee if you put forth the effort, you will be surprised how strong your brain can become and overcome the physical challenges you face.

What is the first thing you want to do when a cure/treatment to FA is found?  Play in a pickup basketball game at Metro sports

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? It simply means that I live each day like everyone else. Yes, it may take me longer to get somewhere or button my shirts or I may not go out in snow/ice, but every day, I live a positive and healthy life that someone without FA would live. I just take a longer route.

 

We are stronger TOGETHER! Find a new Meet the Community interview every Monday!


 


About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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