Building small habits through exercise to stay strong with ALS

Ever since my ALS symptoms first appeared, I’ve been trying to rebuild the trust I once had in my body — to trust that my leg will hold me, my foot will clear the floor, and my hand will do what I ask of it. Most of all, I need to trust that my body won’t surprise me.

On most days, my body cooperates. On the days it doesn’t, I try not to lose heart. Instead, I rely on a system that gives me the confidence and strength to get through the day.

During one of my early visits to the ALS clinic, my neurologist explained that my muscles had become spastic — tightening and stiffening due to overactive reflexes. Spasticity ranges from mild tightness to painful, uncontrollable spasms and cramping, making walking, moving, and even speaking difficult.

I found that daily, gentle range of motion stretches helped keep the physical spasticity manageable. But I quickly realized my brain was another culprit I had to learn to manage.

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Fear of falling

For instance, our home is fully carpeted except for the kitchen, which has large tile squares. When I walk across the carpet with my rollator, I have no problem. But for a long time, the exact moment my foot touched the kitchen tile, my back, arms, and leg muscles would freeze up, making every step forward a huge effort.

My brain was jumping from relaxed confidence to high anxiety, working overtime and conjuring images of me falling onto the hard tile and needing an ambulance. All while trying to stabilize my balance, issue manual commands to each foot, and calculate the distance left to go, fear took over. Fear, lack of trust, and brain fatigue were directly triggering my spasticity to flare. Once I recognized this connection, I set out to build a strategy that would restore my confidence and quiet my fear of falling.

I reminded myself that fear isn’t always the enemy; it cautions us in real danger. The problem arises when fear lingers long after the danger has passed — or when no real danger exists at all.

That is why the short, therapeutic exercise routines I practice throughout the day are so vital. They help maintain my balance, posture, and joint range of motion while sending clear signals to my brain that I am safe. In turn, my confidence in walking returns.

Anchoring a movement

Consistency, however, is key. If I miss a few days due to a busy schedule or simply feeling down, my body feels like it’s starting from scratch. To prevent that, I rely on “anchors” to keep me on track.

For example, to maintain leg strength and mobility, I perform seated leg extensions. The secret to staying consistent is tying the movement to an automatic anchor. Since I always sit down for meals, I do 10 slow leg extensions after finishing my food and before standing up, alternating left and right. It takes just 30 seconds, but doing it three times a day adds up to 30 repetitions — more than I could comfortably complete in a single session.

The meal is the anchor. (For another example of how to anchor daily exercises, check out my previous column, “Be Willing to Do Just One Squat.”)

ALS inevitably alters our relationship with our bodies and tests our sense of trust. But with small, intentional strategies, we can regain our confidence, calm our minds, and continue living 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.