Wednesday, July 2, 2025 – Day 323

Wednesday, July 2, 2025

Good morning.

Yesterday was a mixed bag. This whole idea of staying distracted from ALS… well, some days it works better than others.

There’s plenty on the horizon to lift my spirits—the July 4th holiday is almost here, and we’re heading to Fence Lake later this month. Just the thought of being up there, surrounded by water, trees, and family, is a bright spot. And we’ve got lots of visits lined up with friends and family—something to genuinely look forward to.

But if I’m being honest, what’s weighing me down right now is this sense of unproductivity. Reading is a great escape, and I truly enjoy it—but when the day ends and I look back, I often find myself asking, “What did I really do today?” Too often, the answer feels like “not much.” And that stings. I need to find something—some kind of purpose project or creative outlet—to fill that space.

I also think the toll of ALS and last week’s surgery recovery has chipped away at some of my energy and optimism. The biggest concern right now is walking. It’s gotten very difficult. My legs feel heavy and weak—not numb in the sensory sense, just like the strength has drained out of them. It’s like running a long, brutal race and crossing the finish line with legs that suddenly turn to rubber. I’m hoping for some bounce-back soon, even a small improvement would mean a lot.

But here’s the good news: the feeding tube might be the secret weapon. It’s designed to boost energy and help preserve muscle, and I’m starting to feel those benefits. Yesterday was another success—two full formula feedings and no problems at all. I used the gravity method again (much easier on the stomach), and for dinner, I got to enjoy Jill’s lasagna. Jill, it’s still a masterpiece—thank you again!

So here’s the upside: I think I’ve finally got the nutrition part figured out. And even though solid food isn’t much of a draw anymore (eating’s gotten tricky and, frankly, I’m just not that into it), I’m confident I’m getting what I need. That’s a major win.

Now I just need to build on that win. Keep reading for joy. Look forward to those summer visits. And, most importantly, find a project or hobby that gives me back a bit of purpose. I need that—and I think it’ll help me keep moving forward.

In other hopeful news: my beautiful, tricked-out power wheelchair—the Cadillac of chairs—is nearly here. It’s cleared all the red tape and made it to the final stage: delivery. Fingers crossed this last leg doesn’t drag out. Originally, I wasn’t supposed to see it until late September, so if it shows up early… well, under-promise and over-deliver. I’ll take it.

And a big shout-out to the college crew, who sent a photo from a brewery in Amsterdam (cheers, Kaz and Gina—we missed you in the pic!). Enjoy your European adventures and hoist one for me. 🍻

Wishing everyone a great Wednesday. Thanks for being part of my team.

Love you guys! ❤️