Wednesday, June 4, 2025 – Day 295

Wednesday, June 4, 2025

Good morning! Welcome to Wednesday.

I heard a description yesterday of how New York City smells, and it cracked me up:
 “Horse poop and then trash and then subway vents and pee and oddly, cinnamon gum.” 🤣😂😱 
The kind of sensory experience you never forget—and never ask for.

On a much more enjoyable note, the photos from Saturday’s open house at Illinois Beach State Park are ready!
👉 Open House Photos
 You’ll need to enter your email to access the gallery. Once you’re in, prepare to be transported back to a truly special day. There are a lot of photos—so take your time and enjoy browsing through to find your favorites.

ALS Update We met with the pulmonologist yesterday. The main reason was to start the process of getting a feeding tube.

Step one: confirm my respiratory system can tolerate anesthesia. If it can’t, that changes everything.

So today, I’ll be fitted with a non-invasive breathing machine to use overnight. I’ll need to wear it for a few weeks while the team fine-tunes the settings. This isn’t just prep—it’s protection. It’s about making the eventual procedure as safe as possible.

In two weeks, I’ll meet with the GI doctor to discuss the surgery to insert the feeding tube. The tube connects directly to my stomach and will allow a much easier way to get the nutrition I need. I can still eat—this just gives me another option for getting calories and protein.

It all sounds clinical, but emotionally… it’s a heavy step. Another marker on the road I never wanted to be on. But here we are. Still, I’m okay with it. I really am. I want to be walking on September 13, when Alex and Nicole get married.

Eating—something I used to love—is becoming more of a chore than a joy. And that’s hard to admit. Food was always a big part of my life. It brought people together. It comforted, celebrated, and soothed.

Heck, my love for food and beer is what got me into running in the first place. I figured if I was going to indulge, I’d better keep moving or I’d wind up tipping the scale over 200 pounds. I was determined not to let that happen.

Now, I’m hovering between 160 and 165 pounds—a more than 10% drop from my old 185-pound self. The mirror shows a thinner version of me, and not in a way I enjoy seeing. But if the feeding tube helps me hold the line—gives me the strength to keep walking, to keep hugging, to keep living—I’m in.

There’s still fight left in me.
 And yeah, I’ll still take that chocolate milkshake—with plenty of calories. That’s a small bright spot. I mean, who doesn’t love a chocolate milkshake?

Last night we met up with Tom and Joy at CLB. Mark, Barb, Donna, and Joe joined us too. It helped make up for completely missing them at the open house on Saturday. It was fun to relive the highlights… and get what else?

More hugs!?

Have a great Wednesday.

Love you guys! ❤️