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FARAFARA Cure FA

John Day

John DayName: John Day

Age: I am 50 years old.

Where do you call home? I call southeastern Indiana my home. I am about 30 minutes away from Cincinnati, Ohio.

Education degree(s): I had some mechanical engineering courses in college.

Who do you live with? I am currently single and set in my ways. I have no children, and I live by myself. I have lived on my own since I was 18 years old.

What's a typical day for you? My typical routine throughout the day varies, but I always make sure to exercise. Just managing things around the house and errands keep me busy.

How long have you known you are living with FA? I was diagnosed with FA when I was 12 years old.

Are there any others with FA in your family? No, no one else in my family has FA.

Describe your transition from walking to walker/wheelchair. I remained ambulatory until I was 30 years old. I still walked at home and used a wheelchair when going out. I then transitioned from walker to an electric wheelchair, which was a difficult experience.

John Day collageWhat do you like to do to stay active and what type of exercises work for you to stay strong? I really enjoy working out, and it helps me all the way around. From physically keeping me ahead of FA, and slowing down its progression, to helping relieve stress. I enjoy lifting weights at home, and at the gym. I make sure I do stretches with elastic bands, and stretch and do sit-ups in bed. This all helps me, and I feel helps keep me one step ahead of FA. (Most people that know me in the FA community think that I was late onset, but it was in fact early onset since I have had it most of my life now. I truly believe that exercising has helped and this is proof!)

Do you have any hobbies or special interests? I have many hobbies some of which include, my solar panels, fishing, and traveling. I am an outdoorsman. I enjoy being outside, which is probably why I enjoy the things I do. I fish in my pond quite a bit and used to enjoy hunting a lot as well. I like sports too! Football, baseball, and basketball, but football is my favorite. But I like UFC, and other sports as well.

When FA gets you down, what do you think/do to feel better? When FA gets me down, I normally work out to relieve stress and keep me motivated.  Sometimes I like to keep my mind focused on other things.

What is one way living with FA has POSITIVELY affected your life? The one way FA has positively impacted my life that stands out the most to me is the amazing people I have met; from the scientist to the other people in the FA community.

What is a favorite motivational quote of yours? "Idle hands are the devil's workshop."

What is the best advice YOU could give to a person who has been newly diagnosed with FA? A piece of advice I would give someone who has been recently diagnosed with FA is twofold. First, doctors don't know everything. Secondly, it's up to you to try. Even if you're scared or can't do something easily, you
have to try, because you could end up surprising yourself.

What is the first thing you want to do when a cure/treatment to FA is found? First thing I would do is dance, dance for joy!

How do you live your life in the face of adversity? Living in adverse circumstances is all about reaction and my decisions. I just take things one at a time; it's all just baby steps.

Tell us a little more about you... I have my own non-profit called Friends of John Day Charitable Trust, www.friendsofjohnday.org. I started this organization to donate money to FARA, via Race Across America-Team FARA.

AndreaKiess mtc sig 16

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