Wednesday, October 22, 2025 – Day 435

Wednesday, October 22, 2025

Good morning, all!

It’s way too early. The house is chilly, and I’m sitting by the fire wrapped in a quilt. I’m so thankful for these handmade gifts—they really take the edge off cool mornings.

It was another restless night with the NIV (non-invasive ventilator). Things started out fine, but around 2:00 a.m. I woke up flat on my back, and the NIV was blasting air like a leaf blower. I felt a rattle in my throat and tried to cough it out—but my cough is already weak and pathetic. Add in a mask that’s pushing and pulling air, and it’s nearly impossible. As I was trying to clear my airway, my breaths were uneven or I missed them, and this caused NIV grow louder—as if it were angry with me.

For a few minutes, it honestly felt like I was drowning in my own fluids. I didn’t panic, but the thought crossed my mind: Is this how ALS ends—suffocating in bed, fighting for air? Then another thought: This machine records everything. Does anyone actually review the data? Or do they just make sure I’m using it long enough to keep Medicare happy?

Eventually, the commotion woke Cindy. She asked if I was okay, and I mumbled a muffled “no.” Talking through that mask is nearly impossible, but she could tell something wasn’t right. She got out of bed and came to my side, where I held out my arms so she could pull me up. It’s not an easy task—dead weight is no joke. She wrapped one arm behind my back and the other around my arm, doing her best to get me upright. I tried to help, but there’s just nothing left in the core muscles. Once I was up, she had to hold me steady so I wouldn’t fall backward.

After a few minutes, I managed to get repositioned, hips scooched back, pillows arranged, and the NIV finally started behaving again. The air evened out and things went quiet and we went back to sleep —problem solved.

Then came the squeak. Every breath made a faint little noise, barely noticeable at first, but impossible to ignore once you heard it. I fiddled with the mask to make it stop—no luck. Fifteen minutes later, the squeak had evolved into a gurgle. It sounded like there was water in the hose. What the hell?!

By this point, it was 3:00 a.m., and Cindy was awake again (though I’m not sure she ever fell fully back asleep). I finally told her, through the mask, that I was done. I couldn’t take it anymore. She helped me sit up again and remove the mask, then got me to my walker so I could head downstairs for a very early start to the day. Safe to say, an early nap is already on the agenda.

We’ll have to figure out what’s behind the gurgling in the hose—that’s a non-starter. I really want to sleep through the night without waking Cindy. She already struggles to get a full night’s sleep as it is. Maybe it’s time to move into the guest room, where I can raise the head of the bed and stay more upright. I really don’t want to make that move, but at least it’s an option.

Meanwhile, I’m going to pick up Look Closer by David Ellis so I’m ready for the college book club review this weekend. It’s my first one so I want to be well read.

Have a great Wednesday. By the time you read this, I might already be napping. 😴💤🥱 Love you guys! ❤️

Photos:

Yesterday’s lunch with a couple of my old IMC colleagues—Terri (my “work wife”) and Scott. We were a tight crew in the accounting department back in the 80s. Lots of good memories. Yes… even accountants can have fun!

A couple more photos of my high school friend’s vacation in Italy.