ALS taught me to be adaptable, but sometimes I push back

At times, we may be unwilling to change — and that's OK

Dagmar Munn avatar

by Dagmar Munn |

Share this article:

Share article via email
banner for

Adapt, adapt, adapt!

Readers of this column know that’s one of my favorite mottos. I depend on it, especially because I live with ALS. It helps me deal with the condition’s ongoing changes and keeps me moving forward. But sometimes I have to push back. And when that happens, I’m perfectly OK with not accepting change or adapting.

As I wrote in the column “The Art of ALS Adaptability,” being adaptable doesn’t come naturally for many of us. It’s a skill we acquire, based on our past experiences. If you’ve lived with lots of change, had to adjust to new conditions, and problem-solved your way through various situations, adapting may be easy for you. But if you haven’t had to face many changes, there’s still hope for you. In my column I share a simple three-step method using the prompts assess, adapt, and accept.

Is it a temporary or long-term solution?

Sometimes we don’t even recognize how we are adapting. My first symptom of ALS, for example, was a weak lower leg and a foot that dragged with each step. I unconsciously compensated by adopting a strange pirate-with-a-peg-leg walk — a workaround that certainly wasn’t working.

Soon, my lower back ached and concerned friends asked if I was OK. That pushed me to see a doctor and led to my diagnosis of ALS. Plus, I was issued a rollator. Maintaining the ability to walk was so important to me and my quality of life that I focused on adapting and learning to love my rollator.

Recommended Reading
A person uses a computer to access medical records.

EverythingALS launches AI platform to accelerate ALS research

This one took a long time

Although a rollator kept me balanced, the toe of one foot continued to drag with each step. My neurologist referred me to a specialty orthotic and prosthetic clinic for a pair of ankle-foot orthoses (AFOs). They quickly posed the biggest challenge for me in terms of adapting to ALS-related issues.

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. I returned to the clinic for adjustments, tried several versions of padding to ease my aching toes, and searched the internet for adult knee-high socks (that didn’t seem to exist anymore). I even began doing exercises to strengthen my legs, and I battled the Velcro closure strips.

All in all, I’ll admit to spending the past seven years getting those AFOs to the point where they felt, as Goldilocks would say, just right.

So it was a complete surprise when, at my recent ALS clinic appointment, my neurologist posed the question, “Would you like me to write an order for a new pair of AFOs?”

My mind raced. New AFOs?

I looked down at the white plastic on my feet as images from the past seven years mixed with thoughts of new shoes, new socks, padding, fittings, and having to learn to put them on, take them off, and walk with them.

“No, thank you, I’m good,” I replied.

Why I’m not willing to change

At that moment I joined the many ALS patients who don’t want change. Some people fear change because they associate it with loss, risk, or failure. Others resist change because they’re comfortable with the status quo. That was me. My need to feel in control and live with a predictable situation far outweighed the temptation to own a pair of the latest, whiz-bang style of AFOs.

That’s the thing about ALS. Because it affects each person differently, our reasons to adapt or not are also different. It’s a personal choice. Not wanting to adapt to change is not a failure, but an opportunity to learn about ourselves: our fears, preconceived notions, self-confidence, and sense of self-sufficiency.

How adaptable are you? It’s a question worth pondering. I’m cheering for you because I believe 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, and are intended to spark discussion about issues pertaining to ALS.


Scott Goldsberry avatar

Scott Goldsberry

My experience started off the same as you described your beginning. Lower leg with steppage gait. I was dismissed on 3/26/24, 4 months after initial symptoms. I am 53 and a bit stubborn to change. Your column has enabled me to be a little more open minded to my new was of life. Thank you.

Scott Goldsberry avatar

Scott Goldsberry

In my Post, dismissed should be diagnosed. Auto correct mishap. In addition, I would love to pick your thoughts on treatment that was part of your journey. I am on Rilotek and starting Radicava tomorrow. Thank you again for your column.

Dagmar Munn avatar

Dagmar Munn

Scott, thank you for your positive comments, I'm happy to know that what I write is of help for you. I take Rilotek (Rilozule), and have been for the past 14 years. It is the only medication I take. Dagmar

Brenda lovell avatar

Brenda lovell

I was diagnosed with ALS 5 days before Christmas 2023. And I’m devastated, what can I do to prolong my life. I cannot speak, I have Bilbao ALS . Thank you

Dagmar Munn avatar

Dagmar Munn

Hello Brenda, I am sorry you have been diagnosed with ALS. It is always a shock to receive the diagnosis - - I remember it well. Everyone has different symptoms, so it is difficult to pinpoint exactly what you should do. But there has been much research published on ways that we ALS patients can slow down our symptom progression - - thus, prolonging our lives. In general, learn what ALS is and isn't. Check out good resources such as ALS News Today and Your ALS Guide I have written about my journey with ALS on my ALS and Wellness Blog, perhaps some of my posts will be helpful for you. Dagmar

Leave a comment

Fill in the required fields to post. Your email address will not be published.