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FARAFARA Cure FA

Ben Tyler

Ben Tyler 2Name Ben Tyler

Age 35

Where do you call home? Alton, IL (across the river from St. Louis, MO)

Education degree(s): Bachelors of Science in Nursing, I am an RN. I am not able to work as a bedside nurse due to FA. Fortunately, there are many areas I am able to work. I am in Case Management at Barnes Jewish Hospital in St. Louis.

What is your relationship status? I am a single male currently taking applications for a single female. I have 2 children, girls, ages 11 and 10. I live alone part-time, and part-time with my kids in my home. This isn't Tinder is it?

What's a typical day for you? My typical day begins early. I wake up the girls and attempt making our lunches- making a mess of the kitchen. Luckily I have a dog that cleans up everything I drop. And then I continue getting myself prepped for the day. I have many grab bars in my bathroom to help exercise safety. Usually family picks the girls up for school, and I head the opposite way to work. I drive myself (40 min commute). I utilize my scooter at work to get to and from my office to the floors, etc. My day at work ends around 4:30 pm and I return home.

How long have you known you are living with FA? I was diagnosed in 2012. Looking back I would say I've had true symptoms since 2009. I was that clumsy type and not athletic as a kid.

Are there any others with FA in your family? My brother had symptoms before me and was diagnosed in 2011. He is an amazing brother and went through all the medical hoops, CTs, MRIs, intramuscular EMGs, labs galore...etc. All I had to do was show up to a neurologist and have blood drawn for genetic testing. Thanks, Joe!

Describe an adaptation and/or transition you have had to take due to living with FA. I utilize a scooter at work all the time. When I am out with friends and family I use a walking stick or a hand.

ben collageWhen FA gets you down, what do you think/do to feel better? What I do to feel better is focus on the NOW. We can get so caught up in LIFE, and worry what tomorrow will bring or beat ourselves up over what was said or done yesterday. Enjoy and focus on the now. The people that you are currently around. The opportunities you are given at the current moment. The precious time you have been granted. "Yesterday is history, tomorrow is a mystery and today is a gift––that is why it is called the present."

What is one way living with FA has POSITIVELY affected your life? Living with FA has opened my eyes and heart to others. I see people and things in a different light. I understand how precious life is, and the uniqueness of the gifts we are given. I view love for others in a whole new way.

What is a favorite motivational quote of yours? A quote that motivates me is "FA & your history does NOT define you."

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Do not be afraid to talk to others about it. Surround yourself with people who love you. Ask questions, get connected.

AndreaKiess mtc sig 16

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