Exercising with a Progressive Disability During a Pandemic

Throughout this experience, I’ve prayed for people with mental and/or physical illnesses that are exacerbated by the current circumstances. For some, the lack of routine, of social contact, or just of busy-ness/distractions triggers depression, anxiety, etc. For others, physically staying in one place much of the time can worsen mobility issues (in other words, use it or lose it!). I will share how I’m combating the latter issue in today’s post.

Refresher on my illness and why I exercise

If you don’t know me (or if you don’t remember the in’s and out’s of my disability)–hi, I’m Lily, and I have Friedreich’s Ataxia. FA is a genetic, progressive, neuromuscular disease that worsens my balance, fine motor skills, speech, hearing, etc. and also causes fatigue and cardiomyopathy. The adjective “life-shortening” is usually included somewhere in there, but I’m trying to defy that. 😉

I regularly exercise to:

• Maintain muscles and abilities
• Keep my heart strong

Can’t do TOO much lying around and looking cute. 😉

Hypothetically, muscular atrophy can afflict anyone. Of course, it doesn’t happen to 99.8% of able-bodied people, since they tend to…ya know…walk around and what not. But if a completely healthy individual somehow wound up in a coma for six months then woke up, they’d have to learn to walk again. Point being, muscular atrophy is not technically an issue unique to the disabled. Since many FA-er’s cannot walk around, we, though conscious, face the same fate as the person lying in a coma–so we have to combat atrophy, constantly.

Cardiomyopathy means thickening and/or weakening of the heart. One to two years ago, my cardiologist informed me my heart was TWICE as thick as the average person’s. 😦 Long and complicated story short, my FA doctor thinks my heart “rebounded” after I finished a two year clinical drug trial. [The implications: the drug successfully prevented my symptoms’ progression, but when I quit taking it, my symptoms dramatically worsened as a backlash. Despite the medicine apparently helping me, the drug trial didn’t provide “statistically significant” results, so nothing came of it. *sigh*] The doctor insists that a thick heart is less concerning than a weak heart. So, another major factor in my exercise routine is challenging my heart–pushing it to beat fast and hard on a regular basis–to maintain its elasticity.

Exercising during a pandemic

I’m blessed my trainer has continued to work out with me all this time. He has dumbbells, a bench, a mat, and a pull-up bar in his apartment. Between those tools, a staircase I go up each time as a warm-up (he comes up behind me, his hands steadying my hips and stabilizing me), and just walking around (the hardest task of all), we’ve still been able to do a range of exercises. Admittedly, doing all body weight and/or free weight exercises is tougher than just using machines, so our quarantine workouts are just as hard, if not harder. However, when gyms open again, I predict it will take me (and every other gym junkie) a couple months to build back up to the weights I could handle beforehand on various machines.

I hope this isn’t the case, but it’s possible I may never re-attain those same weight limits, since my disease is progressive. That’s why physical illnesses and societal pauses don’t pair well. My FA doesn’t wait for anyone, not even ‘Rona.

I also exercise at home, where I have dumbbells, a mat, and a door frame with one step and grab bars on each side. Using these tools, I can do a few routines which primarily focus on abs and arms, though the stair step-ups and a couple mat exercises work out my legs. [If you’d like to try working out at home, check out this post I made last year: Handicap-Approved Supplies to Enhance Home Workouts (With Exercise Suggestions).]

When the stay-at-home order was first enacted in my state, I felt uncertain how situations would be handled (and what would be deemed “necessary”). I was technically breaking the rules by visiting my trainer, as we were only supposed to come in close contact with those in our household. I’m also vulnerable due to my heart issues. Given the mandatory order and my personal risk level, taking a hiatus from training would’ve been completely justified. But I knew: if anything is worth taking risk, it’s this–physically combating FA with each fiber of my being. If I quit walking around with my trainer for a few months, I might lose the ability to walk forever. If I slow down on my exercising, everything from taking a shower to driving will get harder more quickly. No matter what I do, my condition will progress…but FA’s going to have to drag me kicking and screaming.

Thanks for reading! Do you or someone you know have mental or physical illnesses which are detrimentally affected by social distancing? Let me know in the comments. Please pray to God to heal my heart muscle!

P.S. for those who remember my post on feeling discouraged during workouts as my disease progresses: I have been using a brace on my pesky left ankle, which was turning constantly, making it almost impossible to walk around with my trainer or leave the gym NOT being in pain and frustrated. The brace has worked phenomenally, thank God!