Saturday, November 22, 2025 – Day 466

Saturday, November 22, 2025

Good morning, everyone.

I’ve been on formula feedings for a little over two weeks now, which works out to about 2,100 calories a day. That sounds like a normal diet for the average person, but 8,000 short for an elite competitive swimmer. Right Alex? However, for someone who’s basically sedentary it seems way too high.

My “activity level” consists mostly of trips to the bathroom and going to my feeding station. And even those aren’t steps according to my watch. They’re more like cautious shuffles. My daily average steps come to about 50 steps per day.

Back in my running days, I used to chase 8:00 minute miles. That was my benchmark—whether I hit it or not. Now, at 50 steps a day, I’m on pace for one mile every 40 days (2,000-steps-per-mile). So yes…my pace may have slowed just a touch. Maybe it’s time to dust off the Superman outfit and see if I can pick up the tempo.

Speaking of fuel, the muscle fasciculations (twitching) I had at the very start of this ALS journey haven’t let up for a single day. Arms, legs, neck, back—you name it, it’s firing. Any time I exert myself—showering, getting dressed, shaving, or especially leaving the house—the twitching kicks into high gear. And when I lie down afterward, it becomes even more noticeable. No quarters needed for my Motel 6 bed. (Some of you are too young to appreciate that comment.) That’s why naps are usually a lost cause. Hard to rest when your body’s hosting its own fireworks show.

This fasciculation reminds me of the phrase. “can’t sit still” and takes me right back to my grade school report cards. Teachers wrote that comment more times than I can count—as if it were a flaw. Looking back, that was just who I was. Always moving. Always onto the next project, even if the current one still needed a little love. A few of you are probably nodding right now. I would have been a good test case for my grade school teacher friend, Robyn.

Anyway, the hope with these three feedings a day is that I’ll either gain weight or at least hold steady. I don’t have a new number for you today, but I’ll report back tomorrow. My baseline was 140 pounds on November 6—the day the ALS Clinic told me it was time for breakfast, lunch, and dinner through the tube.

What I haven’t noticed yet is any real boost in energy. I still feel sluggish most of the day and never truly rested. I blame the respirator. It wakes me up throughout the night, and while I’m in bed for about eight hours, I’m really only getting six to seven when you subtract the awake time. I always thought sleep was measured by time in bed. Apparently the Apple Watch says otherwise.

With a good breakfast I should feel good…so that’s up in 10 minutes. Right now, I’d give anything for a bacon-and-egg sandwich. I’ll just pretend that’s what’s on the menu this morning. 🤤

We’re kicking off a long holiday week with Thanksgiving right around the corner—and only 33 days until Christmas.

Have a great Saturday. Love you guys! ❤️

P.S. Photos from Antarctica courtesy of my sister Lis and her husband. I love getting a window into friends’ and family’s adventures—makes me feel like I’m traveling right along with them.