How 4 wheels and Velcro help me move through my ALS life

Like many ALS patients, I had a difficult time accepting assistive devices into my life. In my case, a pair of ankle-foot orthoses (AFOs), a rollator, and a mobility scooter challenged my adaptability and sense of myself. But over time, with lots of persistence and support from my caregiver husband, I now can’t imagine how I’d make it through a day without each of these contraptions. Here’s what happened, plus a few tips I learned along the way.

My ALS symptoms caused me to have weak muscles in my lower legs and feet that affected my balance and ability to walk. So within the first year following my diagnosis, I had to begin using a walker with wheels, commonly called a rollator. Initially, I thought it was a daily intrusion and would make me look old. Now it’s become my ever-present silent buddy, and I know “old” is only a state of mind. I wear colorful clothing, don’t mind my gray hair, and feel I’m just a young 73!

Besides helping me walk, my rollator has several alternate uses. As I wrote in a past column, it’s part of my daily exercise routine. For example, I stand directly in front of a sturdy chair with my rollator parked in front of me, its wheels locked in place. I can perform any number of simple calisthenic movements, knowing that if I should lose balance, the chair is behind me and my rollator is an easy grab in front.

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A few rollator tips

Instead of worrying about cleaning the dirty wheels every time I roll into the house, I own two rollators: a pristine clean one for in-the-house use only and a second one stowed in our van, ready for use when we’re out and about.

I find that the measure of a rollator’s quality is in the wheels — the bigger the better. Think monster trucks, with jumbo wheels that roll right over junked cars and other obstacles. A rollator fitted with 8-inch wheels can take on lumpy grass, gravel parking lots, and cracked cement ramps with the ease of an all-terrain vehicle.

But learning to live with a rollator wasn’t my biggest challenge during my first year with ALS; that was a pair of custom-made AFOs.

One step at a time

When I first put on my new AFOs and stared straight ahead, I stood balanced and tall. And my feet felt fantastic! Each ankle was fully supported, arches were lifted, and my toes felt snug. My mind visualized a pair of high-quality, European hiking boots.

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 objections? They made me feel awkward, I needed larger shoes, they clashed with my clothing, and I imagined people would stop and gawk. The situation became worse when I test-walked and overheard my husband say, “Gee, from the back you look just like one of those stormtroopers in the Star Wars movies!”

Fortunately, several creative solutions helped me get past all the mental blocks and learn to live with (change that to love) my AFOs. Solutions included buying a dedicated pair of wide shoes and special rubber pads for my toes to prevent sores.

And finally, I changed my perspective. Instead of feeling like an embarrassed stormtrooper, I take my cue from the latest movie action heroes. I figure, if they can have special powers and wear unusual hardware on their arms and legs, so can I. My AFOs turn me into “Super-Dagmar.”

Four more wheels

Even though my rollator helps me roam through our house and walk short distances when outside, I rely on a mobility scooter for traversing big parking lots, shopping malls, and restaurants. It has several handy features, which include a swivel seat and variable speeds. In a restaurant, I can drive right up beside a table, swivel my seat inward, and, magically, I’ve brought my chair!

As for speed, I have the basic 2 miles per hour and dial it up to 4.25, which is considered a zippy speed in the scooter world.

Again, I worried that my scooter would attract attention from nearby diners, but no one seemed to notice me. At the grocery store, I see people on the big store-provided scooters and feel like I’m in an Italian race car when I zip by them with ease.

If you use assistive devices, try my tips and let me know in the comments below if I can help you with solutions to the challenges you’re experiencing. Let’s work together and support each other to learn to live well with our 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, and are intended to spark discussion about issues pertaining to ALS.