Saturday, November 15, 2025 – Day 459

Saturday, November 15, 2025

Good morning, everyone!

ALS just keeps plugging along, and I keep doing my best to manage whatever that means on any given day. Some days it feels like I’m adjusting to change after change, just trying to keep pace with a body that keeps rewriting the rules.

For instance at my “feeding station,” in the kitchen. we added pieces of non-slip material on the floor so I can push my chair with my feet. It’s not a big change in the grand scheme of things…but it’s another sign that the house is slowly being retrofitted for this disease. Every small adaptation whispers handicap accessible, whether I like it or not.

The big shift will be the day we bring the power wheelchair into the house full-time. So far it’s been the outdoor vehicle, cruising the perimeter like a well-trained monster truck…which I’ve gotten stuck in the mulch. But I told Cindy we might need to bring the beast indoors. And honestly, it feels like we’re preparing to bring a Great Dane home—one that doesn’t know its own size. Fragile things will need to disappear, rooms will need rearranging, and let’s be honest…just like a big dog chewing the drywall, the power chair is bound to leave some battle scars on the corners until I get the hang of it. It’s going to be a BIG CHANGE, no way around it.

We’ve had wonderful meals the past couple nights thanks to Cindy’s sister Barb. A casserole and a minestrone soup—both delicious. I went the “real food” route for dinner instead of my formula, and even went back for seconds. Partly for calories, partly because it tasted great, and partly because it felt good to enjoy food again without guilt. Thank you, Barb!

Thursday was supposed to be a dinner with some work friends from my IMC days. But it was also a shower and shave day. Hygiene days…well, they take everything out of me. It’s an arduous process now—slow, careful, uncomfortable. My neck screams the whole time, and by the time I’m dressed, it feels like I’ve run a half marathon with no training, which I have, and I couldn’t walk right for a week. The idea of navigating a loud, crowded restaurant after that? No chance. I canceled. I felt bad, but also relieved. This is the new reality I’m learning to accept: big, noisy venues are no longer in my playbook. Sorry to my work colleagues.

Yesterday, we had planned an outing at Sew Hop’d with Mark, Mike, Cindy, and me. That one worked…not a shower day. Although, getting dressed still exhausted me. We had a small group, sat outdoors, with space around us and no noise. I still fought to get words out, but at least I could be there—listening, soaking up the sunshine, feeling like part of the moment even when my voice wouldn’t cooperate. Sometimes that’s enough, especially when being heard is not job one.

Today the calendar is open, and I’m more than okay with that. Winter is coming, and there’s something comforting about curling up with a book and letting the world quiet down a little. It feels good not to have to push, or plan, or perform—just breathe, read, nap, and let the day unfold.

Have a peaceful Saturday, everyone.

Love you guys!❤️

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