How I got unstuck from negative thinking due to ALS
Adding humor and creativity to the ALS toolbox
Living with ALS can be an emotional roller coaster. However, I’ve found that when I round the bend and find humor in a situation, I’m sure to have a smooth ride ahead. Let me share my latest experience with you.
Before ALS, my life was filled with moving. I grew up doing gymnastics and enjoyed a happy livelihood teaching classes in wellness, fitness, and dance. But as a person newly diagnosed with ALS, my mind swirled with images and thoughts about how patients eventually become paralyzed. The prospect of being unable to move made me angry at ALS and my body, and jealous of others who would be able to move when I couldn’t anymore.
These thoughts dominated my thinking and even caused me to avoid watching TV shows that portrayed any type of physical movement. Some of those shows used to be my favorites. But if I watched the dance competitions, gymnastics championships, and Olympics like I used to do, I’d be left sitting in a puddle of tears.
However, experts say that exercise is beneficial for people with ALS, so I thought, “What’s the worst that could happen? If nothing improves, I’ll just be right back where I started. I can at least try.”
What I did
Sifting through my old fitness notebooks, I attempted modified versions of each routine. But even the simplest yoga poses and Pilates moves had become too complicated for my body to perform correctly. My sense of balance, spatial awareness, and body control were out of whack. Even though my mind clearly remembered how to do a particular movement, my body regarded it as an alien command.
So I thought further back, to my early days in dance and how new and complicated step patterns always made me feel, as if I had two left feet. But with enough practice and time, I found success. The secret was to break down the step patterns into smaller bits, practice in slow motion, and relate everything back to fundamentals. These were easy fundamentals, like doing just a step-step, rock-rock.
I decided to practice only basic movements — very basic movements — such as rolling and stretching on the floor, slow walking forward and backward with my rollator, and even sitting for “chair dancing” while listening to music. While I’ve now added many more movements and exercises to my day, these basic movements continue to be the core of my daily routine.
To my surprise, my daily warmup movements were the same type that dancers and gymnasts do. That aha! moment clicked my brain into wanting to watch all those favorite TV programs again. I’d see the performers prepare and look for new movement ideas.
In fact, a recent televised gymnastics championship prompted a discovery. “I’ve invented a brand-new event: walker beam bars!” I exclaimed. When I walk with my rollator, I imagine I’m pushing a small set of parallel bars and my path is a 2-foot-wide balance beam. Eyes up, posture straight, elegance and balance. My score? A perfect 10. Take that, Simone Biles!
If you’re stuck with negative thinking, try to change your mindset. You just might transform your physical limitations into opportunities! It’s an important strategy for living well with ALS.
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