Wednesday, September 24, 2025 – Day 407

Wednesday, September 24, 2025

Good morning, world.

We packed a lot into yesterday. Cindy dropped off Bear by 8:00 a.m. for a day of play, and we were out the door by 10:00 a.m. for Glenbrook Hospital. That may not sound like much, but by the time I’ve done the formula feeding, used the restroom, showered, and dressed, I’ve already lived a full morning. Each step drains precious energy, and they all take extra time.

Take getting dressed, for example. When I pull a shirt over my head, it always bunches up at my shoulder. My thumbs can’t quite pinch the tail to pull it down, so it becomes a five-minute wrestling match between me and a cotton T-shirt. Inch by inch, side by side, I eventually win the battle. Then when I get downstairs, Cindy (or whoever’s nearby) has to do the final adjustments so I don’t look like I lost a fight with the laundry basket. I always need to take a break at this point and rest. This is why I build in extra time to get ready and because I hate being late for appointments.

First stop was with Dr. Ujiki, my GI doc who put in the feeding tube. The bumper that’s supposed to be snug against my skin had worked itself about an inch away. That gave the tube way too much wiggle room—think “loose car exhaust pipe,” but attached to your stomach. See photo…if you can stomach it. LOL! 😂😂😂

We arrived at the hospital by 11:15, fifteen minutes early, and were warned the office was a long hike. I quickly waved the white flag and opted for a wheelchair. A cheerful volunteer pushed me to the office, chatting all the way. Not a bad way to travel and much easier on my legs. Energy conservation…I’m following it.

Once in the exam room, the PA asked a million questions and typed them up in great detail Ike she was working on my next blog post. Then the doctor walked in and—in 60 seconds flat—slid the bumper down and fixed the problem. Done. If I’d known it was that simple, we could have saved ourselves the appointment, the long drive, and half a day. But of course, had we tried at home, I probably would have ended up in the ER with a feeding tube pulled from my stomach. So… worth it.

That left us an hour to wait for my PT appointment. Maggie, my physical therapist, was just back from maternity leave—it had been five months since she last saw me. We caught up, and then I told her about my neck pain, hoping she’d have some magic stretches or posture tricks to fix it. After all, this was PT.

Her solution? A neck brace. That’s it. Wear it when my neck gets tired. Wear it whenever I’m in the car in case of an accident. I sat there trying to smile, but inside I thought: Really? That’s the grand plan? A foam collar? It felt a little like going to the mechanic and being told, “Yep, car’s shot—better just duct tape things and hope for the best.”

Sure, I was bummed. I’d been hoping for a miracle posture fix, or at least some exercise to claw back a little strength and flexibility. Instead, the truth hit: my muscles just aren’t there anymore. So now I’ll be the guy in the passenger seat rocking a neck brace…with limited head movement. Well…I’m not driving anymore so the neck brace won’t interfere there.

So yeah, another piece of ALS equipment joins the growing collection. It feels endless—every symptom adds another gadget to the house. And that part sucks. No, scratch that. This all sucks. But I’ll wear the brace, I’ll protect my neck, and I’ll keep moving forward, even if it’s not the answer I wanted.

After all that, we drove home, grabbed an hour to relax, and then headed out to celebrate Barb’s birthday with friends. It was a good night, and I’ll tell you more tomorrow…because today’s post is already long enough and I have a self imposed deadline to meet. 0700!

Have a great Wednesday. Love you guys! ❤️