Wednesday, April 23, 2025 - Day 253

Wednesday, April 23, 2025

Hello world!

Yesterday was another trip east for a medical appointment—this time to Highland Park Hospital for a swallow study to check how well my swallowing muscles are working…which they sometimes do not…or at least not well.

The test was done in the radiology department, and it involved drinking barium in a variety of thicknesses while being recorded by a fluoroscopy—basically an x-ray movie of my throat in action. It was pretty fascinating to watch on the screen. Thin liquids went down just fine, but as they got thicker, sometimes I needed a second swallow to fully clear my throat. The big takeaway? My swallow reflex issues are “mild” So if I employ a few strategies when I eat then I should be fine. Sip between bites, go slow, don’t talk until my mouth is clear, and be mindful of the vocal cords. Apparently, choking on food and saliva too often can lead to pneumonia thanks to all the bacteria in our mouths. Nice, right? That would really be set me back.

The test was administered by a speech therapist named Ailish, a young Irish woman who was incredibly engaging from the get-go. She asked a bunch of thoughtful questions about my family, my background, and what led me there for the study. She had the perfect energy for her role—genuinely curious, warm, and totally present. Even in the short time we had, you could tell she really cared.

Ailish actually reminded me of Carrie, a high school classmate who’s always had this great ability to make people feel seen. Ailish had that same calm focus—solid eye contact, a warm smile, and that rare kind of presence where you feel like you’re the only one in the room.

Both Cindy and I left the appointment feeling really good—not just because the test went well, but because the whole experience felt so positive. Ailish made something that could’ve been stressful surprisingly comfortable. We even shared the blog link with her. Hopefully she enjoys it—and doesn’t get too lost in the web of names and stories that make up this journey.

After the appointment, we headed over to Norton’s Restaurant in Highland Park for lunch with some of my high school friends. Since we were already in the neighborhood, it made sense to do lunch with Carrie and her husband Neal, they live in Highland Park. Not only were they available, but a few other of the high school friends were too. Retirement really is a gift—it makes spontaneous lunches possible and helps keep us all connected.

This group of friends has been incredible. I was out of touch with them for way too long, but reconnecting has been easy, natural—like no time passed at all. They’ve gone out of their way to support both Cindy and me during this ALS journey. I always knew they were special, but the past six months have shown me just how deep those bonds run.

When we’re with my high school friends, there’s this invisible dome over me—one made of connection, laughter, and light. It offers protection, even on the hard days. And honestly, the laughter from those lunches? It’s more potent than any of the ALS meds I’m taking that promise to slow this thing down. I think friends are like a spoonful of sugar, “they help the medicine go down.”

We made it through lunch, drinks, and plenty of stories without any major choking incidents. There was one moment where I had to get my airway back, but it passed quickly. Just a reminder to slow down, stay quiet when I need to, and wait until my throat is clear before talking again. Sorry if I scared anybody.

We left with big smiles, the sun warming our faces, and everyone saying “see you in a couple days” or “next week.” No goodbyes—just the promise of the next time we’ll gather for more food, more stories, more laughter.

On the way home, we stopped by Donna and Joe’s to pick up Bear, who had been on a long weekend playdate. From the barking and bouncing at the storm door, I’m pretty sure he was happy to see us. Before we pulled away, I thanked them for taking care of Beat—and gave a special thanks to Donna for what I think is the last box of Do-Si-Dos that she placed in the bag.

I’ve got one sleeve left this morning. I’m going to ration them, chew slowly, and try to make them last. Should get me to… 8:00 a.m., if I’m being honest.

Have a great Wednesday.

Love you guys! ❤️