My ALS Superhero Goal Is to Be Stronger Than My Clothes

 

When I was diagnosed with ALS, one of the many things that changed was my relationship with clothes. I used to buy and wear clothes that caught my fancy. Now, living with ALS means I’m choosing comfort and the ease of getting myself dressed over the latest trend. Has this happened to you, too?

Following is how I’ve learned to stay positive, maintain my self-confidence, and be a secret superhero despite my ALS clothing problems.

A world of heavy

My ALS symptoms began with weakened feet and legs. When I walked, my feet felt like they were shuffling along in cement blocks. Even my clothes felt heavy, especially shoes, belts, and sweaters. Getting dressed for the day became stressful, as I wrestled my way into long-sleeved T-shirts and tugged up the zipper of a pair of jeans.

I began to imagine a huge cosmic trick had been played, transporting me to a Marvel comic book world ruled by super-sized gravity and resistance.

A super solution

I saw two issues. First, I needed to ditch the buttons, zippers, and fussy closures. Loose-fitting pull-on shirts and pants with elastic waists soon filled my closet. Everything that didn’t pass my “light and easy” test went into the donation box.

But I also knew if I made everything too comfy, too easy, I might lose valuable muscle strength and coordination that comes with the physical movements required in getting dressed.

Those movements fall into a category called incidental movements. For example, if someone else prepares your meals, makes your bed, and fetches the mail, you’ll miss out on simple physical movements that would have provided your body, muscles, and bones with healthy activity and muscle stimulation. That results in a condition many physical therapists refer to as disuse-induced atrophy. 

So, my second strategy was to change my perspective and play off the idea of my comic book world. I invented an alter ego — a superhero with superpowers and the catchphrase, “I’m stronger than my clothes!” (To help my attitude, I even imagine a loud superhero trumpet blasting whenever I say or think the phrase)

I know the phrase is hokey. But weirdly enough, it works for me. For instance:

When I’m grappling with a pair of unruly socks that refuse to slide onto my feet, I stop, breathe deep, and think, “I’m stronger than my clothes!”

When I feel like skipping one of my pre-planned moving breaks to scroll through emails, instead, I stop, push away from my computer, and tell myself, “I have to do this. I need to be stronger than my clothes.”

When I’ve successfully changed from day clothes into sleepwear without a hitch, I pause and think, “I’m grateful I’m continuing to be stronger than my clothes.”

Like I said, hokey. But it works. Try it yourself.

Have you experienced clothing problems due to your ALS? I’ve found lots of good ideas by searching “adaptive clothing” on the internet. Some helpful online adaptive clothing resources include Buck & Buck and Zappos Adaptive.

Remember, together, we can learn to live well with ALS. And together, we can strive to be stronger than our clothes.

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Dagmar Munn
ALS and Wellness Blog

"You are the hero of your own story"

~Unknown~

A version of this post first appeared as my column on the ALS News Today website.