Slowly But Surely, My AFOs Taught Me These Valuable Lessons

 

I’m happy to announce I’ve finally resolved a love-hate relationship — with my AFOs. It took persistence, but I can now step into my white, molded plastic ankle-foot orthoses (AFOs) and walk pain-free. That’s important to me because I want to keep walking for as long as possible, and my AFOs help me do just that.

Who knew that during my many Goldilocks moments of trying to find the perfect “fit,” I would also learn several valuable lessons that continue to help me live with ALS? Here’s what happened.

The backstory

Like many ALS patients who need to wear assistive devices, right from the get-go it was difficult to accept having to wear AFOs. My objections? They made me feel awkward, I needed larger shoes, they clashed with my clothing, and would people stop and stare? Fortunately, several creative solutions helped me get past all the mental blocks and learn to live with my AFOs. (I wrote about it in this post)

But two issues remained

A few years later, I found myself struggling with two problems. Although the AFOs allowed me to walk without becoming tired, they started feeling heavier and heavier. And, ouch! My toes really hurt.

Every step I took felt like my feet were dragging heavy cement blocks. “Why would my doctor make me wear such heavy footwear?” I’d lament. So, I decided to weigh them. It turns out they weighed only 5 pounds each — less than a pair of typical winter boots!

Around the same time, I lost the ability to sit in a chair and get up again without someone’s help. My solution was to design a program to improve my leg strength. Starting with several small knee-bends or air squats, I eventually graduated to full-fledged chair squats: 40 a day.

And surprise, surprise: As my leg muscles strengthened, my AFOs felt lighter and lighter. (I wrote about it in this post)

Next, came my aching toes

Utilizing my skills as a home crafter, I carefully cut and glued padding to the footbeds of the AFOs. But it didn’t help. Neither did gluing padding to the insides of my shoes. All that padding ended up squishing my toes even more.

Noting my frustration, my husband joined in and pointed to an ad in an AARP magazine for little gel toe covers. My smile was all he needed to quickly place an order online.

When they arrived, I ripped out all the amateurish padding in my AFOs, carefully slipped a gel cover onto each toe, and … aah, relief!

Lessons learned

·    Change your perspective and look at your problem from all angles. My AFOs weren’t heavy, what I needed was to improve my leg strength.

·    Be willing to try new approaches and listen to the suggestions from your caregivers, family, and friends. Although a logical idea, padding my AFOs didn’t work, and neither did adding padding to the insides of my shoes. But, padding my toes was the answer.

·    Put into practice my motto: “Adapt, learn, and change” – Read how here

My story has a happy ending. But I know many ALS patients let their frustrations take over and give up altogether. Their AFOs, rollators, and other assistive devices get tossed into the dumpster.

Remember that ALS throws many, many challenges our way. I urge you to take the time to discover what works best for YOU.

Because I believe we can live well while living with ALS.

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FOR MORE ON THIS TOPIC, I SUGGEST THESE POSTS

Learning to Use a Walker/Rollator (ALS Humor)

How to Reset Your ALS Mindset

Explore more posts HERE

 

Dagmar Munn
ALS and Wellness Blog

 

Forget the mistake, learn the lesson.

 

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