I Treat My ALS Clinic Like an Olympic Challenge

Cue the heroic Olympic theme song, our competitor is ready to begin!

As the timekeeper signals all onlookers to be silent, the athlete draws in a deep breath, then while slowly exhaling, counts out loud from one to 10. She successfully completes the task using just that single breath of air, causing the onlookers to cheer “Hurrah!”

But this event isn’t being held in a grand arena. Rather, it’s being conducted in a small patient exam room being used for today’s ALS clinic.

I am the competitor, and the onlookers are my doctor, speech therapist, and husband.

Imagining that my ALS clinic is a mini-Olympic competition is one of the many mind games I create to help me cope with my ALS. Let me tell you why, and how this helps me, and perhaps it can help you, too.

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Why use an ALS clinic?

ALS clinics are an efficient way to provide care for an ALS patient. In my case, in a span of three hours, I see my neurologist, speech therapist, physical therapist, respiratory therapist, dietitian, and sometimes more. And the best part is I stay in the same room while they all come to me!

But even though I go with a positive attitude, ask questions, and receive good advice, after 11 years of attending these clinics, I realize there’s only so much advice everyone can give me. So, rather than let the whole experience become a disappointment, I’ve decided to turn it around.

I thought why not take advantage of having all those clinicians and their testing equipment in one room? Why not use them to help validate my at-home exercise and practice sessions? This way, every few months, I can see if I’m maintaining my “routines,” or if I need to tweak them.

How I ‘train’

Most ALS patients come to know all too well the various tests conducted at their own clinics. At mine, these include assessing muscle strength by pushing against resistance and testing my ability to pull. There are also measurements of my ability to speak clearly, cough, and breathe deeply. I finish up in the hallway outside the exam room to demonstrate how I can safely walk with my rollator.

At home, although I follow a well-rounded gentle exercise plan, I’ll admit to adding in a few extras to help me train to the test.

For example, knee pushups done on our bed mattress help me keep my arm strength. Over the years, I’ve been able to increase from a shaky one to a daily count of eight.

Then there are my breathing and speaking regimens, from blowing bubbles to joining various online voice studies. Instead of walking in circles through the house, I step onto my rebounder and walk in place to peppy music.

What about the tough times?

Sure, there are times when my ALS symptoms cause a low score at the ALS clinic. Just like the Olympic and Paralympic athletes, I experience challenges and setbacks. But that’s when I draw inspiration and strength from their dedication to a goal. I adjust my attitude, tweak my plan, and start all over again.

And I remind myself that I’ve already proved that progress can be made one step at a time by being willing to “do just one.”

My mini-Olympic ALS clinic is a lesson in visualization, which entails using my imagination to picture the challenges ahead and to see a positive situation. It’s what top athletes do to focus before a competition, and what I do to help me each and every day.

Join my team! Together we can learn to live well while we live with ALS.

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