Knowing my body isn’t my enemy helps me be at peace with ALS symptoms

Even though I know my brain is in charge, there are days when my body seems to have a mind of its own. When that happens, I remind myself that my body is not the enemy. In fact, there is no enemy at all — just me, misunderstanding my ALS symptoms. Over the past 16 years of living with ALS, I’ve learned that my body isn’t at fault; other factors are at play. Here’s how I bring my mind and body back into peaceful cooperation.

My initial symptoms were weak legs and feet. I started dragging my toes and having frequent near-falls. Frustrated, I’d mentally scold my feet: “OK, feet, why don’t you get with the program?” Of course, chastising them didn’t change a thing.

It was only after I took time to understand the nature of ALS that I stopped blaming my feet. The disease was occurring in my brain and spinal cord, damaging the motor neurons that communicate with my lower limbs. My muscles were simply receiving garbled messages, so it was no wonder my legs weren’t cooperating.

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Learning to navigate challenges

Slow became my new speed. Taking a moment to think through a movement command and giving my feet time to respond proved safer and less fatiguing. Still, my brain kept remembering how I used to zip through each day. To stop comparing my current reality to my former self, I gave my new normal a name: the ALS slow lane.

Another mind-body disconnect happens during everyday tasks, like sitting in a chair and wanting to cross my legs. When my legs don’t respond automatically, I simply reach down with my hands and lift one leg over the other. No anger, no frustration. I know my leg muscles aren’t failing out of stubbornness; they just aren’t receiving the signal today.

Rather than giving up and sliding into a slouch, I view it as my body shifting into manual mode. It just needs a little assistance, and helping is more than OK. In fact, the more I guide my body through familiar movements, the better.

Doing nothing isn’t the answer

Previously, I wrote about how people with neurological conditions often experience weakness in muscles that should be strong simply because we’ve become sedentary and those muscles are no longer being recruited.

Allowing muscles to go unused becomes a habit, leading to further weakness and what is known as learned nonuse or disuse atrophy. That is something I want to prevent for as long as possible, and it’s why I am a strong proponent of incorporating short bouts of movement and therapeutic exercise throughout the day. Whether my muscles are moving on their own or I am manually helping them, I can feel my body thanking me.

ALS certainly brings its share of challenges. But by choosing not to view my body as the enemy, I avoid being in a constant battle with myself. Instead, my mind and body work as a team as I continue learning how to live well 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.