ALS and Wellness Blog

ALS has taught me many life lessons, and one of the most important ones is to never give up. Recently, though, I was put to the test by a very sticky strip of Velcro.

The episode became a metaphor for how easy it is for us ALS patients to fall into the trap of negative thinking.

From the day we’re told we have ALS, we experience loss, and our futures suddenly pivot in a new direction. Then the disease slowly chips away at our daily lives. Driving a car is out, speaking becomes difficult, and our bodies move so slowly. It’s easy to become bitter and to think, “Why bother?” We can get stuck in what I call the “ALS waiting room.” That’s why I’m always looking for ways to keep my mind focused on the positive.

A Velcro story

I have a pair of athletic shoes that I wear around the house. They’re lightweight and comfy and have an easy-peasy Velcro closure. And although they’re more than five years old, they look practically brand new.

Using them indoors doesn’t seem to wear them out, but putting them on and taking them off each day does. Thus, the fuzzy side of each Velcro strap has finally morphed into a stringy mess. So, it was time to order a new pair.

Searching online, I sadly discovered that the shoe company had discontinued my particular pair. A deeper dig through the internet resulted in zero hits.

My thoughts quickly spiraled downward. “I don’t want a different style, and I don’t want to risk a bad fit from an online purchase. My ALS makes it difficult to drive to a mall, and I don’t have the energy to try on every shoe in every store.”

At that point I was willing to give up and was ready to settle for the second best option.

But then my crafting, do-it-yourself brain stepped in. I pondered what I could do to repair the shoes I had and be able to keep them. Another dive into the internet produced the perfect solution.

Shoe surgery

Within a few days, I sat opening a small package of self-sticking Velcro tape. The label said it was made for fabrics and could withstand rugged use, and was easy to apply.

Since my ALS symptoms make my fingers clumsy, I was super careful cutting through the old, fuzzy Velcro stitching on each shoe strap. Once I removed the old strip, I cut a matching new strip, peeled off the paper covering the sticky side … and then the “fun” began.

A section of the sticky side became firmly stuck to one of my fingers.

In an attempt to pull it off, my free hand reflexively grabbed the stickiness to pull it off. But now the fingers on both hands were stuck. The strip had the strength of super glue and the floppiness of flypaper.

Just in that moment, I realized that moving at a slow speed due to ALS was actually an advantage. Rolling and peeling off one finger at a time, I could then firmly press the strip onto my shoe.

Thankfully, the second shoe was a much easier task because I knew to leave the paper backing on and peel it back a little at a time.

The result?

The new Velcro has been working perfectly for the past month. I am proud of my efforts and of my don’t-give-up and don’t-give-in attitude.

What is your reaction to life’s obstacles or the challenges of ALS? Do you give up and think there’s no solution? Or do you ask, “What do I need, and who or what can help me?”

Try to look for positive solutions (and don’t be afraid to ask for help). Trusting our ingenuity is one more way we can learn to live well while living with ALS.