Acronym Soup for the Soul 1/3

Hey, just an FYI. This story is a little different from some of my recent posts. It’s more educational/awareness sort of thing, providing some medical-related insight into my ALS journey.

As I’ve referenced over and over, I love me a competition. I was always of the mindset that If they keep score, I wanted to play. Winners and Losers? Damn straight. Let’s get after it.

Not so much anymore. There’s this new competition that I’ve been forced to play for the past 15 months or so. It’s called “amyotrophic lateral sclerosis” (ALS). I didn’t think it sounded like much fun when I was first told of it, and my opinion has not changed. But here I am.

In this competition, there is a score they give after each event, much like if I was doing Gymnastics or Figure Skating in the Olympics (without, you’ll likely be pleased to know, the little tights, thankyouverymuch). 🙂

The event is called an ALS Clinic. The scoring is called an ALSFRS-R score. I attend this clinic every three months and spend several hours with a team of experts in different fields all related to the management of ALS.

The Clinic is a star-studded cast of folks assembled to help ALS patients navigate this journey. Of course, front and center, the guy who is the final arbitrator of the almighty ALSFRS-R score, is my neurologist. I also see (and get tested by) a respiratory person and a pulmonologist. Then I get to visit with a physical therapist, an occupational therapist, a nutritionist, a speech therapist, and a palliative care person.

In addition to all those folks, someone checks in on us from the local ALS Association – they are WONDERFUL. They have just been so great to us. If you ever get the chance to help them, please know they do so much good for people who are in such bad shape.

So as you can see, ALS Clinic day makes for a very busy morning. And to be brutally honest, it is a physically and emotionally taxing few hours. I learned pretty quickly (as in after the very first clinic) not to schedule anything for the rest of the day, as I’m pretty worthless, candidly, much more mentally than physically. The process is not physically strenuous (the respiratory test aside). The thing is, it’s just yet another day that your progressive disease is getting all up in your grill, reminding you it’s there and that you’re not going to get better.

So, what the heck are these tests all about? I’m glad you asked. 🙂

The ALSFRS-R score is meant to help define where an ALS patient is in the progression of their disease. Remember, as I’ve been told dozens of times, “Every Journey Is Different”. I know of people who lost the ability to walk first, others who have lost their ability to use their arms early on, and yet others who initially lost their ability to eat or speak. Regardless of what may be impacted, the ALSFRS-R score is meant to account for these variables.

The ALSFRS-R scoring structure looks at the following body functions.

Cutting food and handling utensils
Dressing and hygiene
Turning in bed and adjusting bed clothes
Climbing stairs
Respiratory insufficiency

In each case, they assign a number 0-4. Much like my golf game, the higher the score is normal. 🙂 Regular, healthy folks should score 48 (12 categories, times max 4 points each… math FTW!)

As I kind of reference in my Make a Deposit post, the average ALS person loses somewhere between 2.5-3.0 points per quarter (that’s three months, not twenty-five cents… just to clarify). 🙂 – which then translates to a life expectancy of two to five years. And, I’ll note, once again, that “Life” expectancy and “Quality Life” expectancy are, sadly, two totally different numbers. Sigh.

Anyway, the whole point of the score is to track progress and, to whatever extent possible, track the speed of the progression. You go into these things praying that your score is only a point or two below the last test, while terrified of the potential four-point drop.

Each expert has individual testing, but who are these folks and what do they do? In the next post, I’ll talk about these individual parts of the ALS Clinic, what happens, and why they matter.

Note: If you want to follow along or learn more about this Journey, I’ve collected these stories into a blog at

Leave a Comment

Send this to a friend