Sunday, October 5, 2025 – Day 418

Sunday, October 5, 2025

Good morning all. One week to the Chicago Marathon!! 🏃‍♀️🏃‍♂️

Last Thursday I reached out to my medical team at the ALS clinic to get myself ready for race day. There will be crowds everywhere, and finding a restroom when I need it is going to be a challenge. I have what I call an excitable bladder—and when it signals it’s time to go, the countdown usually starts at “10, 9, 8…” before all systems are go. So I drop whatever I’m doing and make a beeline for the bathroom.

I’ve been taking a prescription to help with this issue, but it hasn’t done much. So I try to stay proactive—hydrating strategically and keeping travel plans in mind. Sunday will be a different beast altogether: we’ll be outside most of the day, following the race and cheering for all the runners. Restroom access? Let’s just say it’s not going to be convenient.

So, I asked my medical team for advice on managing things without any embarrassing moments. The options? Adult diapers, portable urinal, catheters, or something else.

The “something else” turned out to be increasing my medication dosage to tamp down the excitable bladder. I’d been on a very low dose—5 mg—but can safely go up to 30 mg per day. Plenty of room to experiment and hopefully fix the source of the problem instead of just treating the symptom. So, we bumped it to 10 mg that night, with the option to increase weekly if needed. I liked that approach… even if it means more pills to swallow.

Now for the “but” part.

Yesterday I was hooked up to my feeding tube for lunch, trying to stay on top of calories. Halfway through, just as I filled the syringe with formula, I got the dreaded bat signal from my bladder. And there I was—stuck—watching the syringe drip ever so slowly, like waiting for water to boil.

By the time the syringe emptied, I was in full panic mode. I grabbed my walker and hustled to the bathroom (that part is not easy or quick) but just as I got there and tried to get situated… the dam broke. I couldn’t stop it.

At that point, I knew a shower and change of clothes were in order. I did what I could to contain the mess while Cindy, as always, handled the cleanup with her trademark patience and grace. By the time I got back to finish the feeding, I was exhausted, disappointed, embarrassed, and frustrated—all the emotions that come with another step down this shitty ALS path.

I’m still hopeful the new dosage will help, though it may take a couple of weeks. In the meantime, I’ve got the diapers as backup and will look into catheter options too. And I’ll keep tabs on my hydration so I can try to avoid these situations.

This isn’t the kind of story I want to share, but if I’m going to write about this journey truthfully, it has to include the good, the bad, and the ugly. Otherwise, what’s the point?

It’s a new day, and I’m determined to make the best of it. Now instead of trying to avoid falling everyday, I’ll add trying not to spring a leak in as well.

Have a great Sunday. Love you guys! ❤️

Today’s photo is of Phil and Karen in the Sun City wood shop supporting Andy’s Army.

And Nikki and her Mom at the Chicago Marathon…around 1998 give or take. Thanks to Brian for sharing.