Monday, December 29, 2025 – Day 503

Monday, December 29, 2025

Good morning, everyone. Welcome to Monday.

Let’s talk food… Because I do overnight feedings, I only have one daytime formula feeding—usually around lunchtime. That gives me the option to eat a little by mouth during the day. Since all my calories come from formula now, nutrition is no longer part of the equation…I can eat whatever I want. My bigger problem is that I have almost no appetite. Fortunately, Cindy keeps nudging me throughout the day to eat something, so she’s essentially become my appetite trigger.

For years, my go-to breakfast was scrambled eggs smothered in my homemade habanero sauce, plus an English muffin slathered with bacon jam. Cindy was asking if I wanted anything to eat. Since it was still morning, I went with bacon jam on half an English muffin. When I took my first bite, the flavor hit immediately—and so did the heat. It was mildly intense. Still pleasant, but confusing. Bacon jam has never had any heat to me before.

Then there are my evening gin and tonics. I started wondering if Cindy was making them unusually strong, which would be very out of character for her. I kept asking her to add more tonic because I couldn’t handle the bite. Eventually, my drinks were mostly tonic water with just a hint of gin. And because my swallow is always something I have to be careful with—especially thin liquids—I haven’t actually finished a G&T in forever. Mind you, they’re made in a pint glass.

The real wake-up call came with holiday eggnog—the adult version, made by Evan Williams. It’s usually a safer drink for me because it’s thicker and easier to swallow. But when I took a small sip, my throat seized from the burn. I couldn’t breathe for a moment. It wasn’t long, and I got through it by swallowing my airway clear, but moments like that are always frightening—for me and for anyone watching. Once I was breathing again, I handed the glass back to Cindy and asked for the virgin version instead. That one went down just fine.

I can only conclude that ALS is doing something strange to my taste buds. I think they’re regressing. I’ve become extremely sensitive to intensity—heat, alcohol, anything with bite. This is all new territory, and I’m still figuring out what’s safe and tolerable. One thing is clear, though: loading food with habanero sauce—or any hot sauce—is probably not a great idea anymore.

The good news is my brother-in-law Mark, who has zero tolerance for spicy food, can serve as my taste tester and provide fair warning. Then again…he does like Malört, and I know that would kill me. On second thought, maybe I’ll just stick to formula.

And yes—TMI alert—I did resolve my intestinal backup yesterday. That’s one of the less glamorous downsides of ALS. It had been nearly four days, so by last night I had to help things along. When I went to bed, I felt good.

Have a great Monday. Love you guys! ❤️

Photos of the kids at the Field Museum. Wyatt wanted to see Sue.