Thursday, May 1, 2025 – Day 261

Thursday, May 1, 2025

Good morning, and welcome to May.

Back in October, at Sally and Meghan’s wedding in Milwaukee, most of the Snarski tribe gathered to celebrate. It was the first time my nieces and nephews were introduced to my ALS diagnosis. Let’s just say, the celebration didn’t miss a beat. The weekend was outstanding—we danced late into the night. If I remember correctly, it was close to 10:00 p.m. when Cindy and I finally had to call it. The DJ, by then, had transitioned into music that was…well, foreign to us. I don’t want to call it rap, but I don’t quite know what to call it—maybe “young person’s music”?

We stood back and watched the kids (some of whom are in their 30s) jumping up and down, singing along, and the smiles went from ear-to-ear. I didn’t recognize a single lyric. The music was so loud you couldn’t hold a conversation. And honestly, it didn’t bother me at all to feel like that was my cue to head out. I’ve had more than my fair share of time on the dance floor over the years—doing the same thing, probably making people cringe with my moves. Some, maybe many, would just shake their heads and say, “That’s the Andy dance.” Whatever it was, I had fun.

After the wedding, everyone returned to their corners of the world with stories to tell. One of those post-wedding conversations happened between my nephew Nicholas and Matt Brolley. At some point, Nicholas mentioned I have ALS. No big deal—I’m open about it. But Matt then passed that information to his dad, Bill.

Bill didn’t waste any time. He called me, and we talked for a bit. It was a tough conversation. At that point, I was still wrapping my head around my diagnosis. My voice broke more than once—there wasn’t much room for small talk. Bill asked if he could share the news with our old group of high school friends, and I was relieved. It’s not easy saying, “I’ve got ALS.” It lands hard, and it takes the words right out of your mouth. Other than “I’m sorry,” what do you even say?

But Bill knew exactly what to do. As soon as we ended the call, he reached out to our circle, and within a day or two, they had a date on the calendar. They showed up—ready to hold me close and offer whatever support they could.

Last night, that same group met again for another evening of storytelling, updates on family and retirement (most of us), and just good company. This is the fourth or fifth time we’ve done this, and by now, ALS has mostly faded into the background. No one wants to talk about this shitty disease every single time. Sure, there are a few quick updates—but that’s enough. After three and a half hours, it was time to call it a night. As always, they wouldn’t let me pay for a thing. I try—but they don’t budge. Bill’s comment when he saw the check made me laugh: “Boy, we drink a lot.” Some things never change. I tried again to offer a contribution to the check…answer was still a resounding “NO”!

I hope everyone made it home safely.

I’m so grateful for all the support and love we’ve shared this past year. It’s fun being together and knowing this group has my back. But next time, let’s just split the check—or I’m going to find the server ahead of time and…

On a different note: I mentioned Tuesday that a paperback book showed up last weekend—no note, no sender, just a package. The book was Rules of Prey by John Sandford, the first in a 35-book series. I read it, and nothing about the story gave me a clue as to why it was sent or by whom. Then yesterday, the second book in the series, Shadow Prey, arrived. So whoever you are—I’m sticking with the mystery. I’ll let you know when I finish book two. This is a 35 book series…so this may take a while to complete. I hope at some point you drop a clue about your identity. You’ve definitely piqued my curiosity.

As for my ALS: today is my third full-day ALS clinic appointment. I’m both looking forward to it and dreading it. I’ll learn how my symptoms have progressed—a necessary reality check—but I’m hoping the visit also gives me new tools to keep managing the disease. I should receive an updated ALSFRS-R score. My last one, in October, was 43 out of 48. If I’m following the typical trend of losing a point a month, today’s score should be around 36 or 37.

One final thing: for the past week, I’ve been receiving appointment confirmations from Glenbrook Hospital with a social worker. The first two visits weren’t helpful, so I replied “no, please cancel” to the latest one. But yesterday, another confirmation came through for the same appointment. I’m not sure why they’re being so persistent—maybe they want to ask again if I feel safe at home. I’m half-considering making up a story just to see what happens. I’ll decide when I get there. I know everyone is there to help me…I’m thankful I have this army of specialists so I’ll make sure they all know I appreciate what they’re trying to do for me.

Have a great Thursday.

Love you guys! ❤️