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.
In Friedreich’s ataxia (FA) care, we don’t really have treatment options. There are clinical trials taking place to work on treatments and hopefully one day, a cure. But until then, we are left at the mercy of this progressive, degenerative disease. Wow. That is heavy. And disheartening.
The way I see it, I could react in two ways: fight FA or just let FA win. I’m fighting. Seeing as there are virtually no available treatments for my symptoms of poor balance, decreasing dexterity, fatigue, and slurred speech, I had to get creative. Enter physical therapy.
At physical therapy, we focus on different muscle groups and types of exercises every week. Sometimes I do strength training to equip my muscles to safely and efficiently do daily tasks. Other times, we focus on my core to help keep my center more grounded, strong, and stable. I also do walking, obstacle courses, and functional training to help reinforce and teach my muscles safe ways to navigate my life. We even practice different sports so I can find adaptive and safe ways to play with my kids.
For me, physical therapy is frustrating and rewarding, all at the same time. I get frustrated that I have to hold onto a wall or use TRX bands to do squats with just my body weight, when 10 years ago, I was regularly doing three sets of 10 squats with a 185-pound bar. But I remind myself that every squat I’m doing now is making me that much stronger. I can push off needing a walking aid for a little bit longer if I just keep pushing myself.
Physical therapy is a good way to strengthen muscles that I use every day that aren’t worked by just completing everyday tasks. What I mean is: Yes, my legs are benefiting when I walk around and when I get on and off the floor to play with my kids, but it’s not the same as intensive exercise. Staying mobile and doing everyday tasks is SO important, but so is intentionally exercising those muscle groups. Think of it as being proactive versus reactive.
Physical therapy is also mentally taxing. In many ways, it feels great. I am proactively strengthening my body, fighting my disease progression, and holding onto my mobility. That motivates me and energizes me to make it through my sessions. Plus, endorphins!
But physical therapy is also mentally trying. I resent the reason that I am there in the first place. It is disheartening to perform so poorly at tasks that I used to do for fun. It is exhausting trying to keep up and finding adaptive ways to do things “normal” people do every single day without a second thought.
I would much rather be slamming tractor tires with a sledgehammer at CrossFit than trying to simply sit on a yoga ball for 30 seconds without falling over. I would rather be running with a jogging stroller around Town Lake than practicing standing on one foot without falling over. I would rather be laughing and dancing ridiculously with my girlfriends at Zumba than trying to make it through a set of overhead presses without dropping a weight on my head.
I know that physical therapy is worth it in the end. It helps me SAFELY continue going about my life. I have never finished a session and thought, “Well, that was a bad decision.” I like pushing myself and trying to better myself. It might look different than what I thought working out at 30 years old would look, but at least it’s something. I have to keep trying to stay mobile and strong while the scientists try to find a cure. That’s my job.