Saturday, May 3, 2025 - Day 263

Saturday, May 3, 2025

Good morning!

It’s been a busy week, and I need a couple of days off. My legs were pretty wobbly last night and haven’t improved much overnight, so a quiet day at home sounds like just what I need.

Thursday was ALS clinic day—a long one at Glenbrook Hospital, where I spent most of the day meeting with various specialists to assess my ALS progression. These clinic visits happen every three months. I’ve got one more before Alex and Nicole’s wedding on September 13. That day is coming fast—and yet not fast enough.

ALS clinic days are usually fast-paced, but Thursday was laid-back, with lots of waiting between appointments. I think that’s partly because I’m a returning patient with a known history. The speech therapist was out, I canceled the social worker (I’ve got all of you for that, thank you), and I had PT and OT scheduled for Friday, so Thursday didn’t need to be quite so thorough.

It’s usually a day of knock-knock, come in, “how are you?”, “touch here,” “push there,” notes jotted, scores entered, a few quick questions, and on to the next discipline. By the time it’s over, they’ve had me push, pull, squeeze, resist, breathe in, breathe out, chew, swallow, lie down, stand up, and walk around. They go back and forth between me and the computer, punching in numbers. Those numbers only go one direction—down. There’s no cure for ALS, so the numbers help track how fast things are changing, determine whether I need new tests, tweak meds for new symptoms, or plan for more assistive devices to help with daily life.

It’s a lot of organized chaos, and it all seems to revolve around one amazing person—Peggy, my care coordinator. She is always the first person we see. She’s not interested in numbers, she always wants to know how we’re coping, living life, and asking how she can help. She’s our anchor, our angel. Her love, empathy, and deep understanding of what Cindy and I are going through make all the difference. She has a unique ability to disarm our defenses and reach right into our hearts. Every time I talk to her, I get choked up. It’s hard to hold a conversation through that kind of emotion.

Peggy is our planner, guide, facilitator, and shoulder to cry on. She’s available 24/7 and insists we reach out with anything that’s causing concern. She’s the fixer—and she’s damn good at it. Without Peggy, we’d be lost, scared, and totally unprepared to manage this shitty disease. Thank you, Peggy. You are a godsend.

Back in February, Cindy asked Peggy if she would like an Andy’s Army bracelet. Peggy’s response was immediate, no hesitation on her part, it was quick, “I’d love one!” On Thursday, Cindy brought in a selection of bracelets for Peggy to choose from and at the same time Peggy gave each of us a braided bracelet that she made. I’ve now got three bracelets I’m wearing with pride and if I keep adding to them…it’s okay with me. The message they convey is very important and I want people to know about this journey. Thank you Peggy for your thoughtfulness.

One of the biggest things weighing on me Thursday was my current ALSFRS-R score. It’s been on my mind for months. I know how I feel, but I wanted the number—something objective. Is my progression fast? Slow? Steady? Where do I land on the bell curve?

When my neurologist finished his exam and asked if I had questions, I said I wanted to know my score. He gave me a look—not a bad one, just a kind of reluctant one. He said he’d have to calculate it manually. Fine by me—that’s the one thing I wanted from this appointment. So I waited while he did the mental math. The score maxes out at 48, which indicates no functional loss. I was a 43 back in August, and again in October. Back then, they said my progression looked slow. I remember thinking that seemed optimistic based on just two data points.

A typical ALS patient loses about one point a month. So now, nearly nine months after my last score, I was hoping for something close to 43. I sat there, quiet and hopeful. He finally turned to me and said, “34.”

“Crap. Well, that sucks.” was my immediate response.

I asked what I already suspected: how would he describe my progression? His answer: “You’re right inside the bell curve.” Not what I was hoping to hear, but not unexpected either. It doesn’t change our approach to our planning, we’ve been planning ahead all along wanting to stay ahead this disease —but it’s a reminder that we need to stay ready for what’s next…it’s coming fast and there is no stopping it. Shit, shit, shit…I hate to even think what’s next.

Also on Thursday, my new vanity license plates arrived in the mail. I made sure they went on the car immediately. I think the message is pretty clear and doesn’t need much interpreting. It felt surprisingly satisfying to install, even though it took me almost 30 minutes—kept dropping the screws. I want the whole world to understand my message regarding ALS. See photo.

On that note…I will have to tell you more about the ALS clinic and my Friday OT and PT appointments. They were actually fun…yes…fun.

Have a great Saturday.

Love you guys! ❤️