I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
As a Friedreich’s ataxia (FA) patient, my options for exercise are limited. I can’t go to kickboxing or step classes with my friends, and I can’t go for a run or a hike.
While many popular types of exercise, such as dancing, high-intensity interval training, and the bar workout, are technically a possibility, the modifications I would have to make to safely do them feel like more trouble than they’re worth in terms of emotional investment and getting in a productive workout.
Because heart disease is common among those with FA, cardio exercise is of paramount importance to me. Running and using the StairMaster were my preferred forms of cardio workout before my diagnosis, but with the progression of my symptoms, they no longer are a safe option. As my exercise options became more limited, I had to rethink my approach.
Recently, I have fallen back in love with my recumbent trike, or “Tina” as I’ve named it.
After my diagnosis, I dove deeply into researching the FA community. I saw that one of the main fundraisers for the Friedreich’s Ataxia Research Alliance is a nationwide event called rideATAXIA. At the time, I thought it odd that most of the community couldn’t participate in the main event, because many of us don’t have the balance required to ride a bicycle, much less competitively.
Then I found out about Kyle Bryant, a fellow FA patient and the founder and event director of rideATAXIA. Bryant started this national fundraiser when he and his father began a 2,500-mile cycling journey from San Diego to the National Ataxia Foundation’s annual membership meeting in Memphis, Tennessee, in 2007. Bryant did this on his recumbent trike.
I decided I would adopt his attitude and throw everything I had into fundraising. I found a Catrike recumbent trike on Craigslist and started training for rideATAXIA 2014.
I loved riding my trike. I loved pushing my body and feeling productive. I loved knowing that I was doing something to invest in my health. I loved feeling the burn in my legs, knowing that the strength I was gaining would keep me walking longer. And most of all, I loved that I was safely moving by my own power. I didn’t need assistance. I could push myself and accomplish a great workout, just like anyone else.
Then I had kids and life got busy. I no longer had the time or the energy to ride. Every April, I pulled my trike out of the garage, dusted off the cobwebs, and aired up the tires for rideATAXIA, then put it back in the garage for 12 more months. Other than that, my cardio exercise was keeping up with my kids, swimming an occasional lap, or rowing for five minutes at physical therapy once a week.
My symptoms have been catching up to me and lately, and my slow speed is getting slower, which is frustrating and ridiculously heartbreaking. I was fed up, and I decided I wasn’t going to sit back and be a victim to my FA progression without a fight. I wanted to push myself and go fast.
So, three weeks ago, I started riding my trike for 6.5 miles every day. I live in a hilly part of Austin, Texas, so it is a challenging workout. I am working on shaving off a minute of my time every eight rides.
It is exhilarating, invigorating, and challenging, and it is so worth it. It feels good to strengthen my legs and exercise my heart. I look forward to making this new exercise routine a lifelong habit.
All of this is to say that if I can do it, you can, too. Find the right motivation and the exercise that works for you. It’s never too early or too late to invest in your health.