My family was caught up in the excitement of the Summer Olympics in Tokyo. We gather together to watch the day’s events and collectively marvel at the spectacular displays of athleticism. We ooh and ahh, cheer at the screen like the competitors can hear us, and relish those surprise victories. Some of us (ahem, it’s me) wipe tears during stories of adversity and sacrifice.
Recently, we learned about the daily training regimen and dietary plan of one highly decorated swimmer. The commentator described untold hours of exertion, outlined rehabilitation and strength training, and explained carefully selected nutritional plans. In sum, this one athlete navigates each day with a singular focus.
Dedication. Endurance. Focus. Wait—that sounds like so many of our ALS families.
Before you dismiss my comparison of ALS patients to Olympians, hear me out. Consider the time and energy exerted by patients and families to navigate a single day of meeting nutritional needs: preparation, chewing, swallowing, administering feeds, cleaning feeding tube equipment. Now think about the time and energy expended to transition from bed to a powerchair for the day: getting out of bed/using a lift, bathing, toileting, dressing, getting into the chair. I could continue on this theme highlighting the demands of living with ALS, from leaving the house to navigating a clinic appointment, but I’ll stop here.
We don’t hand out medals for living with ALS but maybe we should. Let’s recognize these warriors and their amazing caregivers who make their daily fight against ALS possible.
They endure. They persist. We see you.