Saturday, November 8, 2025 – Day 452

Saturday, November 8, 2025

Good morning!

Thanks for all the get-well wishes yesterday. I got past the stomach issues early in the morning, but I was tired the rest of the day. I’m pretty sure that was the hangover effect from Thursday’s ALS Clinic visit. Those days are long — physically and mentally exhausting.

We leave home around 11:00 a.m. for the hour-long drive to Glenbrook Hospital, and then we’re squirreled away in an exam room until 5:00 p.m. By the time we walk out, it’s dark. Ugh!

It’s a round-robin of questions and observations about my ALS progression. Many of the questions overlap, but it’s the only way they can fully assess all the changes since my last visit in August.

We started the day with the social worker, Toni, right after check-in and vitals. The exam room door was open when she happened to walk by. I caught her eye, remembered her name, and said hello. She popped her head in, and we chatted for a few minutes — just a nice, unexpected visit. Then our care coordinator, Peggy, came in, and we wrapped up with Toni. One down, eight to go.

As soon as Peggy closed the door, she gave both Cindy and me a long, embracing hug…and just like that, the tears came. There’s something about Peggy that lowers every defense. She’s been with us since the very beginning and has become so much more than a nurse…she’s a friend. That 30-minute talk with her is always the most valuable part of the day. It’s honest, grounding, and full of heart.

After Peggy, the other specialists rotate through…each with about 30 minutes to do their portion of the exam, mark their sheets, and ask their questions. By now, it’s routine for us, and there usually aren’t many surprises…until we get to Lauren, the nutritionist.

That’s when the “come to Jesus” moment arrived. Lauren was clearly concerned about my weight…down to 140 pounds…which caught everyone serious concern, especially since I have a feeding tube. We talked in depth about my daily intake and realized the issue: I’m not getting enough calories from my meals when I choose to eat instead of taking the formula.

Lauren made it clear that to stop the weight loss, I need to switch exclusively to formula feedings three times a day. That’s the only way to get enough calories to offset all the constant muscle twitching ALS brings. If I want to eat anything beyond that, fine…but the formula has to come first.

She made sure I understood the urgency…and I do. So now I’m on my new routine. The silver lining? Cindy’s officially off the hook for the daily “What would you like for dinner?” question. If she slips up and asks, I might just say, “Surprise me, how about a salad!” 😄

Hopefully, this plan finally stabilizes my weight, and maybe I’ll even gain a few pounds by my next clinic visit in early February.

I’m off to “have breakfast.” I noticed a treat from Country Donuts 🍩 — maybe I can find room for one.

Have a great Saturday, everyone Love you guys! ❤️

Photo from Sew Hop’d Brewery. The mid 60’s temp and sunshine made for a great day to sit outside and just absorb the tail end of the fall colors. Snow is a possibility this weekend. Ugh!