A Realistic Approach to Fitness With Friedreich’s Ataxia

Because I’m transparent about my life journey with Friedreich’s ataxia (FA), questions about my approach to fitness are inevitable. Some may think it’s ego-driven and naive to think that fitness is an answer to dealing with a neuromuscular disease. But people just have trouble fully understanding what I’m ultimately trying to accomplish: My job here on Earth is just to remind others that they have the power within themselves to change if they really want to. My approach may seem unrealistic to others, but it’s my approach and it’s what works for me.

Dealing with a progressive neuromuscular disease while choosing a career path in physical fitness may seem odd, but I’ve realized I can live my life with confidence and happiness while also being realistic about my situation. I am well aware that I will get worse physically over time, and how this could affect the longevity of my career. However, every doctor with whom I’ve discussed FA has the same advice: “Keep moving.“

When I first learned I had FA, many people who’d been diagnosed for years reached out to me. They wished they’d gotten into physical therapy or a fitness program sooner, or used a walker rather than transitioning into a wheelchair right away, or eaten healthier and practiced bodily awareness. All of this really resonated with me and stuck inside my subconscious, so I’ve prioritized these aspects of disease management.

It definitely took some years of bad choices and experience to get to the point I am at now. During the pandemic, I’ve realized that physical fitness is the only constant in my life that genuinely makes me happy. Inside the gym, I am can set small and achievable goals that are realistic in my situation. I have no business making a goal to run a marathon, but I can improve on the number of squats or pullups I do each week. Setting those types of goals that I can actually achieve increases my confidence tenfold. I want everyone to feel that way.

I also understand that I can’t train clients myself for as long as I would like. My whole goal is to get other personal trainers and physical therapists interested in working with those who have neuromuscular diseases or disabilities, and to structure an educational program on how to properly assess someone with a condition like ataxia. I also want to show that it’s possible to achieve dreams if you are realistic and honest with yourself.

Everyone deals with the diagnosis exactly how they choose. I’m making a choice to focus on what I can do physically. Is exercise the answer to dealing with FA? No. But I do 100% believe it helps me operate better and assists my body with overall movement. I think it’s essential that we address all negative factors in our lives in order to see the areas we need to improve on. No one knows me better than myself. If I am willing to commit to getting better with mental and physical health while also practicing self-accountability for behaviors by putting in the work, life will be a little easier. I know that I could use all the help I can get.

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Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.