Stepping onto the ALS Rating Scale

Oh, how I wish living with ALS weren’t so murky: We don’t know its cause, we don’t have a cure, and we measure symptom progression by way of 12 questions. I can’t do anything about the cause or cure, but I’m up on my soapbox (the one with the handicap rails, mind you) to voice my opinion about those darn questions.

For 20 years, a simple test has been used worldwide. The questions on the ALS Functional Rating Scale-Revised (ALSFRS-R) also are used in studies and clinical trials of potential treatments.

What is the problem?

My chief complaint is that the test is subjective and requires little demonstration of function or skills. With a possible high score of 48 points, ALS patients are predicted to lose one point per month over the course of their disease. Based on those expectations, my 120 months of living with ALS should put me in negative numbers!

I’ve decided the ALSFRS-R needs a few enhancements, which I’m happy to share with you.

Let’s add a degree-of-difficulty rating

As a newly diagnosed patient, my neurologist surprised me by asking about my handwriting, whether I could use a fork and knife, and whether I used the handrail when climbing stairs. But what about other skills?

When I was coaching and competing in gymnastics, certain skills were awarded extra points for degree of difficulty. We had the simple cartwheel, but being able to do it balanced on one hand was credited as slightly more difficult. And performing it in midair without the use of either hand earned the highest rating.

Let’s translate this system to ALS.

Handwriting? Using a fork and knife? How about extra credit for additional skills? I can still knit a colorful scarf and — when I have to — thread a needle and sew on a button.

Use the handrail when climbing stairs? That’s easy! How about awarding extra credit for ninja heroics when navigating badly placed grab bars in public restrooms?

How about points for risk, originality, and virtuosity when figuring out how to enter businesses or friends’ homes that are not easily accessible? Using back doors, loading ramps, and lifting and shoving a rollator over a brick walkway? I’ve done them all. And from the comments on my columns, most of my readers have, too.

Humor helps

You’ve probably figured out that I’m looking at the ALSFRS-R through a humorous lens. Having a sense of humor is something we need when facing the challenges of living with ALS.

And maybe in this murky world of ALS, my new scoring system has potential. Especially to measure our ability to successfully learn new ways to function. Let’s continue to learn, laugh, and live well while living with ALS.

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