Monday, February 16, 2026 – Day 542

Monday, February 16, 2026

Good morning, everyone.

ALS reared its ugly head this weekend.

I had a fall in the downstairs bathroom a couple of days ago. It was different from my previous falls. I was holding onto the grab bar with one hand and the vanity with the other when I went to step — and my right leg simply gave way. No warning. It caught me completely by surprise. I managed a somewhat controlled drop to the floor, but once you’re down, it doesn’t really matter how gracefully you got there. You’re still on the floor.

And you still have to get back up.

This all happened about ten minutes before my massage appointment. Cindy was home, thankfully. She grabbed the gait belt so she’d have a solid handhold while helping me up. First, though, she had to move the power chair out of the doorway. That’s no small task. The chair barely clears the frame as it is, and it has to come straight back or it chews up the trim. She got it moved — though the door jamb paid a small price. These power chairs are not kind to houses. There’s zero tolerance for error, and I’ve left my share of scars on the walls.

Working together, we got me off the floor just as Ashley, my massage therapist, arrived. She stepped right in to help and we got me settled back into the wheelchair in time to start the session. Not exactly how I planned to begin a relaxing hour.

The other ongoing issue is the ventilator.

We did solve the condensation problem in the hose. Turns out the fix is simple: take the hose near the mask and manipulate to let the water drain back into the humidifier. Easy. We were just overthinking this problem. So now we can actually use the humidifier properly, which softens the air and helps with the dry mouth. It’s not perfect — but it’s better.

Last Monday, the respiratory therapist adjusted the pressure settings, thinking the pressure might have been too high and causing mask leaks that worsened the dryness. But now something else is happening. When I sit up during the night to pee, the ventilator pressure seems to drop off and I suddenly have to work to pull air in. After a minute or two, I sync back up with the machine. Then when I lie back down, it happens again.

Those repeated moments of air hunger in the middle of the night are frightening. Cycling through that over and over wears on you. Getting up is already hard. Adding breathlessness to the mix makes it dreadful. Last night I decided not to use the ventilator at all.

That didn’t work either.

My diaphragm just isn’t strong enough anymore to carry the load on its own. It was a long night.

I sent a message to my pulmonologist over the weekend and I’m hopeful we can sort this out quickly. These settings are adjustable. This is solvable. We just need to find the right balance.

On a brighter note, my brother Bill flew in from Orlando for the Chicago Auto Show — something he’s done for years. He tries to gather us brothers for lunch whenever he’s in town. This time they came out to Crystal Lake to accommodate me. Nick’s wife Jill made tortellini soup, and Bill stopped at Portillo’s for sandwiches. It’s always special when we can all be together. Those opportunities are fewer than we’d like. Tim couldn’t break away from work this time, but we’ll catch him next round.

ALS continues to move forward. That part is undeniable.

But so do we. It’s a new day and I’m here to face it. Between naps.

Have a great Monday. Love you guys. ❤️