What I Thought Was My ALS Was Actually an Impostor Symptom

How exercises helped me handle 'learned nonuse' — and cross my legs after all

Dagmar Munn avatar

by Dagmar Munn |

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I always love having a good “aha!” moment, especially when it helps improve how I manage my ALS symptoms. Better yet is when I learn that what I thought was a symptom of ALS was actually an impostor, the result of something called “learned nonuse.” Here’s what happened.

As I wrote in my column “How I Shift Into ALS Manual Mode,” when I sit in a chair and want to cross my legs, I have to reach down with my hands to help lift one leg over the other. “You have weak hip flexors,” the physical therapist at my ALS clinic would tell me.

Hip flexors are a group of muscles toward the front of the hip. They help move or flex the leg and knee up toward the body, as you do when you march, step onto a curb, or cross one leg over the other.

Why were my hip flexors weak? Well, I thought it was just another part of having ALS. But recently I read how patients with neurological conditions like mine experience weakness in certain muscles that would normally be strong, simply because these muscles aren’t being called into movement.

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Not using these muscles becomes a habit, so the muscles further weaken and finally atrophy to the point of not responding at all. That’s something I want to prevent for as long as possible.

It’s important to know that this type of atrophy is different from what happens in ALS from the death of motor neurons. Learned nonuse, or disuse atrophy, is from a lack of voluntary movement; for most of us, that happens because we’re sedentary. I’ll have to admit, I certainly am, since ALS has severely weakened my feet and lower legs.

My solution?

I decided to strengthen my hip flexors by following a strategy I used to accomplish 40 chair squats — by being willing to do just one.

While sitting, I’d raise one knee up off the chair, lower it, and do the same with the other knee. Mind you, I could only lift each knee about an inch. But I knew that was OK. I did two lifts on each side in the morning and two again later in the day. Every time I sat down, I’d do two sets of knee lifts. Soon I could do five lifts, and my knees went higher, too.

Feeling confident, I tried some knee lifts while standing with my rollator. This became my new routine: standing knee lifts plus sitting knee lifts.

The other day I called my husband over to watch and showed off how I could perform a seated knee lift so high my knee touched my outstretched elbow. He responded with a “Wow, that’s great. Keep at it!”

Crossing my legs? That’s easy-peasy now.

Of course, I can’t wait for my upcoming ALS clinic visit in March so I can demonstrate my new skill to my physical therapist. For me, this was another lesson in never assuming there’s no hope — and learning that you’ll never know if you don’t try.

Let’s strive to live well while we live 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.


Wayne Alton Pollock avatar

Wayne Alton Pollock

Thank you, this is indeed helpful and good to know. I will be adding these to my exercise routine.

Dagmar Munn avatar

Dagmar Munn

I'm always happy to pass along helpful tips for my fellow pALS. Keep moving! Dagmar :-)

Fran Finney, PT and former CALS avatar

Fran Finney, PT and former CALS

Great success story, Dagmar! Thanks for sharing!

Sometimes it is difficult to differentiate disuse atrophy from progression atrophy. The best way to know is by doing exactly what you did - attempting a very gentle and gradual targeted strength program focussing on one area. If the atrophy is from ALS progression, you will not see gains in strength, and the weakening will continue to progress.

Dagmar Munn avatar

Dagmar Munn

Thank you Fran. I always appreciate having the validation from a professional and you're someone with ALS experience to boot.

You are right, the decision for me "to do it, or not" comes down to asking myself, "what's the worst that could happen?" ...I might end up not being able to move... Better to try, than wonder if I had not. Best wishes to you Fran

Keith Bachmann avatar

Keith Bachmann

Inspiring post once again. Thank you.

Dagmar Munn avatar

Dagmar Munn

Thank you Keith!

Michael Thayer avatar

Michael Thayer

I was dx with ALS almost a year ago but do a Thai Chi class at my local YMCA that focuses on balance and slow movements. It involves only my hands right now so I am careful not to overdo hand movements, but strengthen the areas not affected with ALS when i can. I also use to cycle and spend 20 -25 minutes on a virtual bike at the same YMCA. I would like to look at your blog Dagmar and see what you're working on. Carry on....

Dagmar Munn avatar

Dagmar Munn

Hello Michael, you are doing what I would have done at your point. Kudos to you! I might suggest adding some time doing the RESET movements as taught by Original Strength. These are the fundamental ways of moving when we were toddlers. I find that doing these daily helps keep my neurotransmitters (the communication between my brain and muscles) reconnected and working.

I wrote about it here: https://alsandwellness.blogspot.com/2015/07/do-you-rock-n-roll-als-exercise-tips.html
My blog is here: https://alsandwellness.blogspot.com/search/label/Blog%20Index

Best wishes to you!

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