Saying no to 10,000 steps as I redefine my daily distance with ALS
I may walk slowly, but I’m still walking
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One of my ALS symptoms is weak legs and feet, which keeps me constantly struggling to prevent further decline. Lately, I’ve been obsessed with how far I walk. Not with my ability to walk — I’ve been focused on that ever since my diagnosis in 2010 — but with measuring my daily distance.
My opportunities to walk are now limited to rollator-assisted trips around our home, and when I’m out and about, I rely on a mobility scooter. In this ongoing tug-of-war with ALS, I sometimes have to make concessions, but I refuse to give up. Instead, I create strategies to stay positive and preserve my abilities.
Shortly after my diagnosis, I made a list of essential skills I didn’t want to lose: getting down to the floor and back up, standing up from a chair, and walking. Fitness experts call these functional movements — exercises involving multiple joints that mirror real-life activities, as opposed to isolated exercises like bicep curls. Today, these functional movements make up the short exercise sequences I perform throughout my day.
Admittedly, living with ALS has altered my definition of “real life.” Getting dressed on my own was another goal, but the effort often comes with surprises — like putting on my pajamas, standing up, and realizing my pants are backward — forcing me to restart the whole process.
Taking 10,000 steps
My appreciation for walking goes back to the 1980s, when my hospital’s wellness department ran a monthlong daily 10,000-step challenge for staff. We taught co-workers how to use pedometers, track their mileage, and log their steps. Surprisingly, the group that easily logged 5 miles a shift was the lab technicians. They spent their days walking between patient rooms and the basement lab, earning every bit of rest after work.
Fast forward to today: Medical experts still promote walking, with a recent study suggesting a revised goal of 7,000 daily steps (roughly 3 miles).
Wait, what? Three miles? Count me out.
Moving toward a solution
I imagine almost anyone reading this column who lives with a chronic illness has a similar reaction. So how did I reframe my walking goals and stay motivated? I started counting my own steps.
My longest trek at home is from my computer desk to the bathroom on the other side of the house, a round trip of 80 steps. I began tracking my regular journeys to other rooms, adding them up to a daily average of 480 steps.
At first, converting that to a quarter-mile felt unimpressive. But then I reframed it into yards: 440 yards, or nearly 4.5 times the length of a 100-yard football field.
Somehow, knowing I walk more than four times the length of a football field every day feels empowering. I may walk slowly, but I’m still walking, and that is how I choose 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 pertaining to ALS.
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