Hi, friends. In today’s post, I’ll share some of my history/experience with my disability and exercise, detailing how exercise can and can’t help me bear my condition and emphasizing the importance of consistency!
My History With Exercise
I have been dealing with the progressive symptoms of Friedreich’s Ataxia since age 11; I’m 25 years old. Over time, my balance and coordination have continuously worsened.
Like many teenagers, I couldn’t care less about fitness ten years ago. At some point, though, my parents purchased an exercise bike for our house. Though my memory is fuzzy on the details, I started riding the bike every morning before school for 20 minutes. Riding the stationary bike seemed to bolster my coordination.
A couple years later, I moved into an apartment with a friend as I began my second year of college. The complex had a gym, and since walking was only getting harder with time, I started working out in the gym. I was clueless on the subject of fitness, a fact reflected in my workout routines.
After exercising in that gym for a few months, a black man with pecks as big as my head approached me during a workout. He introduced himself, explaining that he was a personal trainer and wanted to work with me. [He later told me that he had noticed something “off” about me and wanted to help, since he has a heart for the mentally and physically disabled.]
Fast forward six years–I have been training with Tobias, who now feels like an old friend, ever since then. In that time, I progressed from walking unassisted to walking with a rollator to using a wheelchair; however, I’ve also gained a wealth of information about exercising with machines and/or my own body weight. I’m also the most physically fit I have ever been.
What Exercise Can & Can’t Do for my Disability
My disability is both genetic and neuromuscular, so I cannot do anything to prevent deterioration of my coordination. You could say that the balance part of my disability is “set in the stone,” hence our relentless efforts to find a treatment and a cure. (Consider making a donation)
I have found, though, that exercise combats other parts of the disease. First and foremost, exercise keeps me physically strong. Having toned muscles rather than atrophied muscles affects almost every part of my daily life. With atrophied muscles, even the most mundane tasks like using the bathroom would be difficult. With toned muscles, I can lose my balance and fall, yet I’m able to scoot to a grab bar and pull myself back up. Just a fact to put this in perspective: when many other FA’ers fall, they are stuck on the ground until a caregiver or 911 comes to help them.
Exercise is also good for my heart. FA patients experience cardiomyopathy, the weakening and/or thickening of the heart muscle. According to the latest test results, my heart is alarmingly thick, yet it beats like an ox. All these years, I’ve been exercising my heart muscle right along with the other muscles, and it hasn’t been a walk in the park. There are times when I’m halfway crying during the workout; it hurts for something thick to contract quickly, repeatedly, for minutes at a time, not to mention the ridiculous effort required even to hold my trainer’s hand and walk across the room.
I am straight-up ugly when I work out–face red as a tomato, hair pulled back unceremoniously, mouth agape and panting, possibly snot or tears on my face. But this is what it takes…just to deteriorate at a slower rate.
The Importance of Consistency
Consistency is key to this equation. If I skip a few days, my body becomes sluggish, and the next time I work out, I’m already struggling with things I could do the week before. I sometimes have a dark chuckle and think, “Dang–if only others were as committed to their jobs as you are, FA!” It’s like pouring water continuously in a cup with a hole; I have to make that metaphorical pouring my lifestyle, or the metaphorical cup will be emptied quickly.
But what’s truly dark is to contemplate where I would be if I never worked out at all. Would I be in much worse shape because my muscles atrophied? I’m grateful that I don’t know. My crossing paths with Tobias had to be part of God’s plan.
Given the depressing tone of this post, I want to end by saying that while I have my epic-breakdown-pity-parties from time to time, I’m blessed in many ways, so I am joyful overall. 🙂 But exercise is crucial for my health and happiness!
Thanks for reading! Are you disabled, and/or do you exercise? Let me know in the comments.
Retrospective Lily 
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