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FARAFARA Cure FA

Seth Holm

Seth HName: Seth Holm

Age: 25

Where do you live? St. Paul, MN

Work/Education: Beginning school in Spring 2020 to work towards an Accounting degree

Who do you live with? I am currently single, I live with my parents and little sister.

How long have you known you are living with FA? I was diagnosed when I was 21 years old at Mayo Clinic in Rochester, MN, so about four years ago. I had symptoms for a half dozen years prior, but balance and coordination had significantly gone downhill by that point in time. It felt good to know why I'd struggled in sports, exercise and simply participating in activities my friends did.

Are there any others with FA in your family? My fierce little sister, Mekayla!

Describe your transition from walking to walker/wheelchair. By the time I was diagnosed I was using a cane or walking staff to ambulate safely. Within a year, my balance had degenerated enough to where a walker was necessary for me to stay on my feet. A bad tumble in November 2018 left me with a fully ruptured ACL and MCL, torn meniscus and an impaction fracture to the top of my tibia. After walking around on it for five months, it was decided that I'd have it surgically repaired in April 2019. At first, I had to rely heavily on my manual wheelchair both inside and outside of the house, which was very hard on my spirits. However, with extensive physical therapy and strength training exercises, I was able to regain my mobility to the point I was at before my injury. So today I use a walker in the house and outside for short distances and my manual wheelchair for the long game!

Seth CollageWhat do you like to do to stay active and what type of exercises work for you to stay strong? I go to the gym a few times a week and love to be outdoors and in nature as often as possible.

Do you have any hobbies or special interests? I love fishing, gardening, caring for animals, trekking through the woods and anything that gets me outdoors!

When FA gets you down, what do you think/do to feel better? Think about what I've accomplished, it's relieving to think about the things you can do and not the ones you can't.

What is one way living with FA has POSITIVELY affected your life? The FAmily that has graced my life. Fellow FAers have truly shown me the meaning of words like perseverance, fortitude, determination and steadfastness. They inspire me not only to stay active and mobile but in every aspect of my life and every goal I hold myself to.

What is a favorite motivational quote of yours? Even before I knew I had FA, I'd channeled my inner-Dory and came up with "Just keep stumbling!"

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Be relentless and persistent; if you love doing something keep doing it! Even FA can't take away something you do on a daily basis, but that's what it takes is DAILY FORTITUDE!

What is the first thing you want to do when a cure/treatment to FA is found? I think about this every day. I plan on running into the woods and living off the land for a few weeks. Fishing for my own food, building shelter, finding clean water sources, building fires, all of it. Eventually, I'd prefer to live off-grid on my own self-sustaining farm complete with a small barn and greenhouses to grow food year-round.

"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? For me it means giving in is not an option. If FA wants to try to take something from me (i.e. abilities, mobility, sensory), it's going to have a heck of a fight to deal with. "Oh, I fell down again? Let me get back up with a smile on my face!"

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