Monday, May 19, 2025 - Day 279

Monday, May 19, 2025

📣 LIVE EVENT ANNOUNCEMENT 🌻 Season’s Sunflower Hour — Special ALS Episode. In just 1 day, we’ve got something real to share. 🗓 Tuesday, May 20th
🕖 7:00 PM CST
📍 LIVE on YouTube Join me and the family for a candid conversation about life with ALS — or as we’ve come to call it, that shitty disease.

We’ll talk about the hard stuff, the funny moments, and even those questions people haven’t had the nerve to ask out loud.

💬 Got questions? Bring them.
🎥 Tune in live, interact in real time, and be part of the story. 
 Link to the show.

If the link does not work, copy the following into your browser and hit enter:

https://www.youtube.com/live/KWi-VMIc_m0?si=41ZvrUWT7LUkNBOT

Good morning… I think.

Last night’s sleep was rough. I kept getting tangled in the bed covers and had to wrestle myself free throughout the night—not an easy task when your body won’t cooperate. Add to that, my shoulders are aching lately when I’m sleeping. Is it muscle loss? Lying on one side too long? Something else entirely? I vaguely remember reading that sleep becomes more difficult as ALS progresses. I need to revisit that subject and see what I can do to improve my sleep…maybe gummies. Sleep and reading are my escapes, and I need both to stay sane.

Thinking about ALS 24/7 would chew me up. Speaking of books… the Prey series pressure is real. Book #6, Mind Prey, arrived yesterday—still no note, no sender, just another surprise package. I’ve asked around and everyone claims “not me.” I’m not buying it. Time may tell.

Meanwhile, I haven’t even finished Winter Prey. I get a few pages in and start nodding off. Maybe it’s the book. Maybe it’s the lack of good sleep. Maybe my nutrition’s off? Either way, I’ve got to push through. I don’t want to fall behind. It’s starting to feel like high school and college all over again—homework stacking up and wondering if I can ever catch up. I think I’m more disciplined these days compared to those early years…so I think I can…keep up.

Cindy and I tackled the backyard hose situation yesterday. Years ago, I buried heavy-duty hoses to keep everything tidy and off the patio. Every fall, I’d blow out the water to prevent freezing. Well, one of them didn’t survive winter—or a rogue landscaper’s shovel. It sprung a leak. I looked at the hose spraying water…and thought…I can’t fix this. Another dirty job for Cindy.

We slapped together a temporary fix with a hose over the patio, but I was already frustrated. Attaching a simple hose to the spigot used to be a non-issue. Yesterday, I couldn’t even get the threads lined up. My hands weren’t strong or steady enough. After several failed attempts, I gave up and passed the job to Cindy.

Frustrated and, honestly, pissed off, I wheeled back to the garage and parked the chair for the day. I needed a reset. Reading and writing helped divert my attention, while Cindy labored outside cleaning up the back porch. By mid-afternoon, I was in a better mindset. I’m not sure Cindy was, as I watched her trudging to the shower.

Later, we met the Balasis—Barb, Mark, and Vic—at Kishwaukee Brewery for a couple of beers on the patio. It was only 60°, but the sun made it feel warmer, and it turned into a great afternoon. We followed up with Italian beef sandwiches at their place. Dessert? Chocolate chip cookies. I ate four or five—Barb’s jaw hit the floor. That alone made it worth it.

The north wind picked up as we wrapped up, and by 7:30 it was time to call it. Thanks, Balasis, for the laughs, the food, and a much-needed good time diversion.

Today looks cloudy and cold—no temptation to garden. Probably for the best. I don’t need a third day in a row of outdoor defeat.

The bracket brigade is coming over today so making bracelets on a chilly spring day is a good indoor activity.

Have a great start to your week.

Love you guys!❤️