Tuesday, January 6, 2026 – Day 511

Tuesday, January 6, 2026

Good morning, everyone.

Let’s talk about ALS—specifically the top three physical issues I’m dealing with right now—because the physical side quietly drives everything else: the mental load, the emotional swings, and the social engagements.

I still find it odd to write about this stuff. But this is what I’m working through every single day. And the biggest takeaway—one I don’t want to gloss over—is this: I’m still doing it. I’m still showing up. I’m still winning.

Breathing has been my biggest focus these last couple of weeks. I’ve been using the cough assist machine far more than usual—around ten times a day now, compared to the two to four that had been my steady routine for months. The concern is simple and constant: keeping my airway clear. If I don’t stay on top of the phlegm and secretions, I worry I’m setting myself up for pneumonia.

It’s not pretty. I won’t paint the full picture—but trust me when I say the sound and sight of this process are, objectively, disgusting. Necessary, yes. But still disgusting.

When I reread that part above, it reminded me of a dinner conversation years ago at 1922. Nikki was about ten, sitting next to her Uncle Tom, and she announced—without hesitation—that the lima beans were disgusting. Tom scolded her and said, “If you don’t have anything positive to say, Nikki, don’t say anything at all.”

Without missing a beat, Nikki replied, “Well then… these lima beans are positively disgusting.”

Touché.

The whole table lost it. And honestly, that’s kind of how I feel about this part of ALS. I’m not being dramatic, I’m just being accurate. Sometimes the truth isn’t pretty, but you can always find a place to laugh and grin.

Mobility I’m now full-time in a wheelchair—and surprisingly, it’s made my life easier. I didn’t want to give up walking, but standing up from a seated position was becoming a struggle, and when I did walk, I was hunched over and uncomfortable. This move feels like the right one.

Here’s the “however” part.

I’ve noticed that when I transfer, my leg muscles are very tight, which makes standing difficult. It’s probably why I used to fall backward so often when trying to stand. I’m working on stretching, and when the physical therapist arrives today, that’s going to be a major focus. If I lose the ability to transfer independently, I honestly don’t know how we manage daily life—and that’s a thought I don’t want to face—not in the near-term anyway.

And then there’s speech.

I can still talk, but forming words takes more effort, and stringing them into full sentences is becoming a challenge. When people come over, Cindy’s support in conversations is essential. I need quiet settings, rest breaks, and patience if I’m going to communicate effectively. And if my audience has any hearing issues of their own… well, then we’re pretty much doomed.

So that’s where I’m at today. No drama. No sugarcoating. Just the truth. Because without unabashed honesty, how would you understand ALS?

Thanks for listening. Have a great Tuesday.

Love you guys!❤️

Photo from 2016…helping support a friend’s CSA. This was the lead in to my organic farming.