Thursday, October 16, 2025 – Day 429

Thursday, October 16, 2025

Good morning.

Happy Birthday, Mary Ann! 🎁🥳🎉

Looking ahead to next year—the Chicago Marathon is set for October 11, 2026. I can’t believe I’m saying this, but Alex has already reached out to ALS United to lock in a spot. He’s got his sights set on breaking the 4-hour mark, which is a tough goal but absolutely doable.

Now’s the time to commit! If you’re even thinking about running, send an email to Sarah Brandt at Sarah@alsunitedchicago.org to get details on how to register for a charity spot and join Andy’s Army. You’ll have fun, support a great cause—and get a pretty cool T-shirt in the process.

Yesterday I had my monthly palliative checkup with Ellen, a PA from JourneyCare. She comes to the house, which makes things a lot easier for me. I really appreciate having her on a monthly rotation in between the quarterly ALS clinic visits—it gives me a safety net in case something comes up. So far, these check-ins have been routine. The opening question never changes:
“How ya doing? What’s changed since the last visit?”

That question always makes me pause. I have to think—what did change? The progression of ALS can be so subtle. I’m constantly adjusting to my new normal, often without realizing what’s shifted until I stop and reflect. Something changes, I adapt (sometimes with a little help from my care team), and move on. It’s been that way from the start.

Here’s what I told her:

The biggest change is that I’ve transitioned to using a wheelchair full time whenever I leave the house. My posture is so out of alignment that standing for more than five or ten minutes—or sitting in most chairs—causes my neck to ache. The wheelchair solves that problem, and honestly, it’s comfortable.

We also talked about my excitable bladder (which, for the record, is not exciting at all) and finding the right prescription dosage to help me avoid “uh-oh” moments when the signal suddenly says, Go now! I think we’re close to getting it right—it just takes some fine-tuning.

Because of the bladder situation, I tend to limit my water intake, which means I’m not well hydrated. That, in turn, leads to intestinal slowdowns—so now I spend more time sitting on the toilet than I ever have in my life. Probably a good two hours a day, often with little to show for my time. If I had to pay per bathroom visit, I’d have to start another fundraiser just to cover it.

On the positive side, I haven’t had a fall since mid-August. Wherever I go, I make sure to hang on to something—or someone. My balance is pretty unreliable, so I take every step carefully. If you ever reach out a hand to help, don’t be offended if I don’t take it every time; I still try to do what I can on my own. But having helping hands nearby is a great backup when I decide to take a risk. Bottom line: I’m doing fairly well, all things considered. I just need more downtime than I used to. Energy conservation is real, and I hit my limit faster these days.

And to think—I actually had an irrational thought after the marathon on Sunday. My mind drifted to what a training schedule might look like for next year’s race. I pondered it for about five seconds before snapping back to reality. Bummer—it would’ve been fun to do a race again.

So, I’ll be cheering from the sidelines and leaning on all of you to run for those of us who can’t.

Have a great Thursday. Love you guys! ❤️

Photos