Monday, June 23, 2025 – Day 314

Monday, June 23, 2025

Good morning, and welcome to a new week.

Today marks a milestone—and like so many milestones on this ALS journey, it carries a double edge.

This afternoon, I’m having the feeding tube installed. I haven’t stepped on the scale yet today, but I’m guessing I’m down to 158 pounds. I’m hopeful this step helps me reverse the steady slide in weight and daily energy. That’s the plan, anyway: fuel the body, reclaim some strength, and keep going.

I can still hear Diane, my PT, strongly encouraging me to go this route as soon as possible. She was the one who gave it to me straight and unvarnished: the longer I wait, the quicker I’ll deteriorate. Thanks, Diane—your words hit home.

Here’s the flip side. This tube is permanent. It’s another box checked in the long list of accommodations I never asked for—but now depend on—to stay independent and functional. And that’s hard to face. None of these interventions are stopping ALS. I know that. It’s a relentless disease, and while we’re adapting at every turn, I also know where this road ultimately leads.

Some days, that reality sits heavier than others. I fight against the melancholy that creeps in—every single day. I do it by leaning into the normalcy we still have, the joy that still surrounds us, and the people who make this load lighter just by showing up. That’s what helps me steer straight.

This journey makes me think of Thelma and Louise—that iconic last scene where they hold hands and drive full speed toward the edge of the Grand Canyon. I’m behind the wheel now. The edge is out there—still distant, still faint—but unavoidably real. And I can’t turn left or right to change the ultimate destination. What I can do is keep fighting with everything I have—for every moment left to enjoy, to love, to laugh.

So today, I fight on. I’ll work on the things I can control—and try my best to let go of the rest.

Let’s see how this goes. If there are any complications… remember…

I love you guys! ❤️
Andy

P.S. we had a couple friends, Ron and Kim, stop over yesterday to pick up some bracelets. We didn’t get a group photo, but Kim snapped one of Cindy and me for today’s blog.