How My AFOs Helped Me Learn to Live with ALS

How My AFOs Helped Me Learn to Live with ALS

Sometimes we need a nudge to help us get over a mental funk and back into the swing of life.

My nudge came from a pair of white ankle-foot orthoses (AFO) with whom I had been having a love-hate relationship. Love ’em or hate ’em, they did end up becoming an important part of my ALS journey.

Meet your new AFOs

One year had passed since my diagnosis of ALS, and try as I might, adopting a positive attitude was a daily challenge. My mind often wandered off, sometimes replaying the doctor’s words: “You have ALS.” Or, I’d catch myself dwelling on the unknowns that might be waiting in my future.

Additionally, walking took great effort. Although a rollator kept me balanced, the toe of one foot continued to drag with each step. I feared the next stage for me was an electric wheelchair.

“Let’s try a pair of AFOs,” my neurologist suggested before referring me to a specialty orthotic and prosthetic clinic.

My initial visit included having plaster castings made of my lower legs, and within two weeks, I was wearing a pair of custom-made AFOs.

Staring at the wall in front of me, I stood balanced and tall. My feet felt fantastic! Each ankle was fully supported, arches lifted, and my toes felt snug. My mind visualized a pair of high-quality, European hiking boots.

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But looking down, I saw a pair of tough, white, polypropylene tubes encasing both lower legs. The tubes extended down into my shoes and were held in place by two double-wide Velcro straps. My brain flashed the words: “Big Foot! Robot-feet! Ortho-peeed-ICK!”

All whining aside, the AFOs balanced my gait, eliminated the toe drag, and allowed me to walk without becoming tired.

Unfortunately, wearing them required a pair of shoes a full size longer and wider than what existed in my closet. A trip to the “We Specialize in Odd Sizes” shoe store went sour when after glancing at my AFOs, the clerk led me to a rack of black and white shoes that must have been in fashion during the Dust Bowl era!

The situation only became worse when I test-walked a white pair and overheard my husband say, “Gee, from the back you look just like one of those stormtroopers in the Star Wars movies!” The look I gave him silenced any further comments.

At home, I sadly pondered all the different ways I could camouflage my lower legs. Maybe floor-length bell-bottom pants? What if I painted the AFOs? Painted my shoes? How about not going out in public?

Seeking to redeem his earlier slip-up, my husband searched online and found a business in the U.K. that sold flat, stylish shoes in large and extra-wide sizes — with free shipping to boot!

I promptly ordered a pair

When the shoes arrived, they were a perfect fit, so I ordered three more pairs in assorted colors.

Elated at how the shoes transformed the look of my AFOs, I decided to shorten a few of my favorite slacks and began wearing bright, colorful, knee-high “happy socks.” Rather than being an embarrassment, my AFOs and socks told the world, I own this look!

Over dinner, my husband and I shared laughs while recounting the entire adventure. “And to think, the process took almost four whole months,” I observed.

“Yes, but,” he replied, “what I noticed most during those four months was that you stopped stressing out about having ALS. Instead, you were more concerned about how you looked with ALS!”

I had to admit he was right

My AFOs help me walk into restaurants, attend meetings, and get out and about. They help me continue to participate in life and focus on my projects. Those four months were a good example of how learning to adapt led me to accept my AFOs and learn to live with ALS.

If you wear AFOs, join us at the ALS News Today Forums, where we have an ongoing discussion on this very topic.

Remember, we can live well while living with ALS.


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 Services, and are intended to spark discussion about issues pertaining to ALS.

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    • Dagmar Munn says:

      Richard – – the website is: Hotter Shoes
      I have had a good fit with my AFOs with their styles: Shake and also Quake. Not sure about styles for men.
      Some folks comment that the price may be higher than expected, but they are quality made, last for years and, have a little style. Using tennis shoes may be an option – – but these work for me. Plus…they have wide shoes 🙂

    • Dagmar Munn says:

      I wear an AFO on both feet, so yes, I need a rollator to provide steadiness when walking. Perhaps someone with only one AFO can walk without using a rollator – – but we ALS folks have a tendency to fall – – so rollators are a safety measure.

      My AFOs help my foot flex upward when stepping forward; eliminating the “toe drag.” They are like wearing stiff ski boots – – awkward, but helpful.

      No driving! They keep the foot in a permanent flexed up position. No way to control the gas or brake pedal.

  1. Patricia says:

    Good for you Dagmar. I also hate when, on top of all the aggravations we have to deal with, we have to sacrifice nicer looks. I wish I knew about those shoes back when….

  2. Julianne Vander Meulen says:

    Excellent take on how one can change their outlook on having to wear something awkward. Remember wearing a leather girdled steel barred back brace for scoliosis from 14-16 years old – used to make up stories about why instead of just saying I had scoliosis. It was impossible to disguise, but I adjusted as best I could. With all the new materials that are available to day, keep hoping “prosthetics” companies will find new ways to make supportive gear more “flexible” yet strong and supportive.

  3. Shelley Steva says:

    I have been using AFOs and a rollator for a year now. With them I have been going to plays, Iceland and now Yellowstone. I would say who cares about what it looks like- this way we can still do things!

  4. Jeanne Gibbs says:

    Stiff ski boot describes my AFO perfectly! It is wonderful that my toes don’t drop and that I can’t roll my ankle, so I am much more confident in walking. I agree with Shelly that being able to do things is much more important than looks.

  5. Lindsay Jinks says:

    The “yoga” flip flops work great with these AFO’s as well. I shed a few tears when I found them a couple of summers ago.

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