We must each find our own way as we learn to live with ALS

I originally planned to write this week about the small ways I’m maintaining my mobility and muscle strength while living with ALS.

However, I waffled back and forth about whether this was a suitable topic. My hesitation wasn’t because my observations were unreliable, but because I worried readers might jump to the wrong conclusion. ALS and improved mobility? Let me explain.

First, a little background. About three months ago, I wrote about walking with my rollator. I caught my reflection in a floor-length mirror and was startled by my slumped posture. I realized I was experiencing a classic case of learned nonuse, or disuse atrophy. Essentially, I was letting the rollator do the heavy lifting that my hip and back muscles used to handle. To counter this, I decided to add three specific exercises to my daily routine.

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Fast forward to last week: I suddenly felt myself walking taller. I was sitting more upright in my computer chair, too. It was another one of those “when things go right” moments. There was no doubt about it — having my muscles respond to a simple regimen was thrilling, and I wanted to share my success.

So, what held me back? Experience. I’ve learned that whenever I mention physical improvements, the comments section fills with questions: Which exercise is the best? What supplements do you take? What specific diet do you follow?

While I’m always happy to share my journey, I hesitate to provide a blueprint. I know how desperate newly diagnosed patients can be to find a way to make their disease disappear. I also know how internet charlatans capitalize on that desperation, peddling quick-fix “cures” to those who are most vulnerable.

Find your own path

The reality of living with ALS is that it affects everyone differently. Our symptoms progress at vastly different rates. There is no single “best” method. There is only the challenge of finding a unique balance for your own body and mind.

We often place so much emphasis on the physical, but the mental side of this journey is equally important, perhaps more so than finding the perfect exercise. Having a disease that affects physical mobility means we aren’t just managing our independence; we are learning how to adjust to shifting limitations. We are forced to develop new routines that often involve caregivers, and we must learn to adapt to a life that looks nothing like the one we expected to have.

I try to approach my life by encompassing both physical and mental needs into a “wellness lifestyle” that fits me personally. As you navigate your own path, I encourage you to pursue whatever works best for your specific needs. Let’s continue to support one another as we learn not just to survive, but to 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 about ALS.