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!

How my Relationship with Exercise Is Changing Due to Disability Progression (Dealing with Guilt & More)

Hi, friends. Today’s disability chat discusses how my relationship with exercise has changed as my disability, Friedreich’s Ataxia, has progressed.

A nagging sense of disappointment

In the past, I’ve written about the importance of exercise for people with limited mobility, shared exercise routines, etc. (All available under the category “Exercise“). I still workout devoutly, but my dynamic with exercise is transforming because the symptoms of my disability worsen with time; limitations such as fatigue, poor fine motor skills, etc. have become more debilitating.

My post-workout, cool kid vibe

I’ve explained in the past how exercise provokes the body to release an array of feel-good hormones, making a workout beneficial to one’s body AND one’s mental state. But this year, the feeling of “badassery” I’ve always gotten from exercise is often plagued by a nagging sense of disappointment. I feel frustrated because I’ve had to cut down the amount of reps I do in a certain exercise or because things are getting harder than they used to be. For instance, my left ankle has inexplicably gotten very weak very rapidly, so when I walk around the gym with my trainer, it “gives out” repeatedly; about half the time, my ankle rolls so badly that I’m on the floor, grasping it and whimpering in pain, unable to put my weight on it for a few minutes.

Two tips: eliminate guilt & adjust/adapt

A blogging buddy who primarily writes about invisible illnesses, Invisibly Me, has written about things we need to stop feeling guilty for–being less productive when we are sick or tired, etc. I need to apply her advice to myself with exercise. I need to stop feeling guilty that my progressive condition is *gasp* progressing and just appreciate my body for all it can still do. I need to stop feeling guilty for trimming down rep counts and cutting out things I can’t do anymore; instead, I should be proud of myself for working out at all (since plenty of people without my obstacles don’t!).

This little guy knows all about adapting!

Aside from eliminating guilt, I need to adjust/adapt. There is a fine line between what I need to just accept and what I can actually change, and I have to quit feeling sorry for myself to find that line. [How many life situations does that statement apply to?!] Given that I can walk (with strong assistance) if not for the ankle issue, I need to find a way to prevent it from rolling–something to stabilize it. Update: I’ve just ordered an ankle-brace-esque contraption, so pray this helps!

My relationship with exercise is changing because my body is changing. But if I want to ditch these feelings of disappointment, I need to:

  1. Accept what can’t be changed and relinquish feelings of guilt for the inevitable.
  2. Discern how I can adjust/adapt to the inevitable and enact changes that will make life easier.

Thanks for reading! How is your relationship with exercise? Let me know in the comments.

My History With Exercise & How It Affects my Disability

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.]

This photo is over four years old…man, time flies!

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.

Hey, look, it’s me with the red face as described below 😉

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.

Life is good!

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.

Handicap-Approved Supplies to Enhance Home Workouts (With Exercise Suggestions)

Hi, friends. Though I love using machines in the gym to strengthen my muscles (especially as a wheelchair user), I workout at home a lot, too.

In this post, I’m providing a list of handicap-approved supplies that can help you get started with working out at home. If you’re not handicapped, you can probably amplify these suggestions!

Obligatory Preface–I am not a doctor or a physical trainer. I learned most of these exercises from my trainer. Also, I apologize in advance for the abundance of made-up names for exercises. 😂

Yoga Mat

I do a lot of exercising on the floor. You can’t fall far if you’re already on the ground! Since some of my back bones protrude, some exercises hurt my back when attempted on the bare floor, but a (thick) yoga mat cushions my weight and enables me to do a range of exercises without any bone grinding.

Here are some exercises that only require your body and a mat:

  • Leg Raises–lie on back, put hands under butt, lift legs as high as possible, go up and down (a 90 degree angle from the floor to your legs is ideal, but some days, I can only get to 45, hehe)
  • Crunches/Sit-Ups–lie on back, sit up at either 45 (crunch) or 90 (sit-up) degree angle to floor, lie back down and repeat (I like to lie completely horizontal and reach down to touch my toes when I sit up–a stretch and an exercise in one!)
  • Opposite Arm-Opposite Leg–lie on back, lift left leg and right arm into air and try to touch hand to foot, go back down and do the same on other side, repeat (the more of these I do, the less capable I am of touching hand to foot, but it’s the effort that counts!)
  • Push-Ups–these are self-explanatory, right? (I can only use my arms for these, but that still hurts!)
  • Side Leg Raises–lie on right side, lift left leg into the air up and down in a sideways motion, repeat on other side (I have to hold my leg with my hand but concentrate on using my leg muscles to do the lifting; otherwise, my leg shakes all over the place, haha)
  • Hamstring Lifts–lie on stomach, lift one leg in the air as high as possible and bring back down, repeat on both legs (this one kinda hurts my lower back, but I know it’s due to the muscles back there being weak…this one is crucial for a wheelchair user!)

Dumbbells

Dumbbells can be used for several exercises, particularly for arms and chest. Dumbbell exercises also challenge my core muscles because I must maintain my balance while using free weights. I use sets of 5’s, 8’s, and 10’s in my home workouts.

Here are some exercises that only require your body and dumbbells:

  • Curls–grab dumbbells, extend arms by your side with palms faced upward, lift weights up and lower back down, repeat
  • Sideways Arm Lifts–grab dumbbells, extend arms by your side with palms faced inward, bend elbows slightly, lift weights out and back down, repeat (if you look like a bird with wonky wings trying to fly, you’re doing it right!)
  • Lifts Over Head–grab dumbbells, push weights upward towards the sky and lower back down, repeat (be careful not to drop them on your head and/or face!)
  • Push Outs–lie on the floor on your back and grab dumbbells, push the weights out and bring them back down, repeat (it’s the same motion as a push-up but reversed)
  • Weighted Crunches–lie on the floor on your back and grab one dumbbell, hold the dumbbell with both hands and prop the weight on your stomach, do crunches

Grab Bars

Grab bars enable me to do exercises that involve standing, and since I want to improve on heart and vascular issues and really work my leg muscles, grab bars are a huge help. Able-bodied people could likely do these with stair rails or even with no rails/bars at all.

Here are some exercises that only require your body and grab bars:

  • March in Place–stand in front of grab bar and hold it, march in place and make sure you’re lifting your knees as high as you can (a good one for people with extreme physical limitations but probably too easy for the able-bodied)
  • Squats–stand in front of grab bar and hold it, squat and stand back up, repeat
  • Step-Ups–hold a grab bar with each hand, step up to the next stair on right foot and lower back down to left foot, repeat on each side (one of the hardest for me–it gets my heart pumping!)

Strap-On Weights

(Image from Valeo Fitness)

I put this one last because it’s the least necessary on the list. Strap-on weights mostly serve the function of making exercises I’ve already mentioned harder. If you’re able-bodied and want to ramp up these exercises, or if you’re disabled but want to get stronger over time, strap-on weights are great. Most of the labeling on my pair has rubbed off with age, but I think they weigh 2-3 pounds each.

Strap-on weights can enhance many exercises named in this post, including but not limited to:

  • Leg Raises
  • Opposite Arm-Opposite Leg
  • Hamstring Lifts (I use strap-on weights with this one every time–can’t let those back leg muscles atrophy!)
  • March in Place
  • Step-Ups

You don’t need a gym to workout! Just a few supplies can open the door to a world of home exercises.

Here’s a typical home workout for me:

  • Stretch & warm up
  • 10 leg raises
  • 10 side leg raises per leg
  • 10 hamstring lifts per leg
  • Repeat all for 15 reps each
  • Repeat all for 20 reps each
  • Stretch some more before getting up and in my wheelchair and rolling up to the stairs
  • 10 step-ups per leg
  • 20 curls w/ 5’s
  • 10 sideways arm lifts w/ 5’s
  • 15 step-ups per leg
  • 15 curls w/ 8’s
  • 10 sideways arm lifts w/ 8’s
  • 20 step-ups per leg
  • 10 curls w/ 10’s, 10 curls w/ 8’s, 10 curls w/ 5’s (aka THE FINAL PUMP-UP)
  • 10 sideways arm lifts w/ 8’s (still working up to 10’s)

Thanks for reading! Do you like these tips? How do you stay fit? Is there a more official name for some of these exercises? Let me know in the comments.

Why & How the Physically Limited Should Maintain Leg & Hip Muscles

Hi, friends. For those who struggle with standing, balancing, or walking due to illness and/or old age, daily minutiae becomes a huge burden once the leg and hip muscles atrophy. Using the toilet, taking a shower, simply getting from point A to point B–every little obstacle is a mountain. While the progression of time or a disease may be unavoidable, maintaining the strength of leg and hip muscles eases the toil of the physically limited.

Below are two lists of some simple exercises for maintaining leg and hip strength: one for home, one for the gym. The lists generally progress from easiest to hardest (in my opinion). I’m not including rep counts or weights; you can judge those for yourself. I myself can’t do the last few on the gym list, but I threw them in since they’re available.

I have no professional background in exercise science. I am just a wheelchair user who has worked out with a trainer for several years.

At Home:

bruno-nascimento-149663-unsplash

  1. Sit in chair with feet on the ground. Take turns kicking legs up (going from 90 degrees/knee bent to 180 degrees/leg straight). Or take turns picking legs up as if marching in the chair. Use strap-on weights to increase difficulty level.
  2. Sit in chair. Stand up and sit back down in chair. Most physically limited people will need a grab bar or something else to hold in front of them. If using a bar, concentrate in your mind on squeezing your butt as you stand so you don’t rely too much on your arms.
  3. Stand at the bottom of stairs (with strong, stable rails). Put right foot on first stair. Use right leg to pull you up to the stair, then step back down on your left foot. Essentially, pretend you are about to go up the stairs but changed your mind and stepped back down.
  4. Stand up, squat, stand back up. As with #2, most physically limited people need a grab bar to do this.

At Gym:

justyn-warner-529952-unsplash

  1. Adductor & Abductor machine (targets inner & outer thighs)
  2. Hamstring machine (targets backs of thighs)
  3. Knee extension machine (targets fronts of thighs)
  4. Leg Press machine (mostly targets glutes and calves)
  5. Exercise Bike
  6. Treadmill
  7. StairMaster
  8. Elliptical

I can personally testify that exercise works wonders for the physically limited. I can feel the difference in the ease or difficulty of moving when I worked out recently vs. if I have to skip several days; I can only imagine how my disability (Friedreich’s Ataxia) would’ve progressed by this point if I hadn’t maintained my strength. Use and keep what the good Lord gave you!

Thanks for reading!

The Importance of Strength (Especially for the Physically Limited)

Hi, friends. Did you know that people with a deficiency in one of the five senses sometimes exhibit a higher acuteness with their other senses? Our bodies are hard-wired for survival, and generally, adaptation and compensation are necessary for survival. Exercise is healthy and beneficial for anyone, but exercise is a crucial component to adaptation/compensation in surviving life with physical limitations. Continue reading “The Importance of Strength (Especially for the Physically Limited)”

How I Met My Personal Trainer

Hi, friends. Does anyone else have a love-hate relationship with Timehop on Facebook? My memories are either photos that recall good times or cringey statuses/shares. Gah. Anyways, a status popped up in my memories from five years ago…”First day with a legit personal trainer. Hellz yeah.” Yes, I used to say “hellz.” It’s hard to believe I’ve worked out regularly and with professional assistance for five years now. Time flies! Continue reading “How I Met My Personal Trainer”