Trial, error, and toe covers: Learning to adapt in life with ALS

I’ll admit that there were times when I simply wanted to toss my ankle-foot orthoses (AFOs) into the trash bin and be done with them. In the early years after my ALS diagnosis, those braces represented one more massive change in my life that I had to learn to live with. But then, the simple hobby that I depended on to relax my mind reminded me that immediate success is not always a sure thing. Learning to adapt is a process.

Like many ALS patients who need to use or wear assistive devices, I found the transition difficult from the get-go. My objections? My AFOs made me feel awkward. I needed larger shoes, and my toes hurt. All whining aside, they did their job: They balanced my gait, prevented me from dragging my toes, and let me walk without getting tired.

Because each molded brace had to slide inside my shoes, finding one size larger and wider than my regular shoe size was frustrating. Local shoe outlets didn’t have what I needed in stock, so I was left to the hazy option of ordering online. When a pair of shoes was finally delivered to the front door, I eagerly inserted the AFOs and tried them on. They fit, but … ouch! My toes still hurt. It felt like defeat.

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Lessons I Learned From My AFOs

A spark of an idea

Later that evening, as I was relaxing in an easy chair and knitting away my mental tensions, I had a surprising insight.

Knitting is my favorite hobby; I’ve been doing it for years. One important lesson it teaches has to do with expectations. Rarely do we knitters expect to begin a project and finish it perfectly in one go. We know there will be a lot of trial and error. We experiment with different-sized needles, make small samples called swatches, and determine what changes need to be made to the pattern.

This process is all about keeping an open mind and avoiding the temptation to give up and throw the half-finished project in a “UFO” bag (Un-Finished Object), never to be picked up again. I decided to apply that same “knitter’s logic” to my AFOs.

It was a challenging plan, but I vowed not to give up. Rather than being forced into adapting to the AFOs, I thought about ways I could adapt them to me.

Using my skills as a home crafter, I began my “swatching” phase. I cut and glued padding to the AFO footbeds. It didn’t help. Neither did gluing padding to the insides of my shoes. All that extra material ended up squishing my toes even more. Undeterred, I kept thinking.

Noting my activity, my husband joined in and pointed to an ad in an AARP magazine for little gel toe covers. We placed an order online and waited. When they arrived, I first ripped out all the failed homemade padding from each AFO, carefully slipped a gel cover on each of my toes, and then added socks. Finally, I slipped on the AFOs, and aah, relief!

Reflections going forward

I know. I get it. ALS throws many challenges our way, and it’s easy to let frustrations take over and give up altogether. Before you do, give yourself permission to experiment. Think of yourself as a researcher willing to try various options. If you feel stumped, ask your caregiver and family members for suggestions. Or, tap into your inner martian and be open to innovations and unique workarounds. Most importantly, don’t give up hope.

Remember, we can live well while living with ALS — it just might take a few extra rounds of trial and error to get the fit right.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.