Monday, November 24, 2025 – Day 468

Monday, November 24, 2025

Good morning, everyone.

Nikki is flying in this morning for a quick visit before she and the family take off for St. Maarten with the Brickhouse clan. Cindy and I were invited to join them, and I’ll admit…it was tempting. An island adventure with sun, sand, swimming, and siestas sounds heavenly. But the real draw would have been time with Coco and Wyatt. We just don’t see them much anymore since this shitty disease entered our lives.

ALS has robbed me of so many things, but being separated from my grandkids feels like one of the cruelest losses. As Wyatt and Coco grow, their memories of me will fade. Sure, they’ll have a vague idea of who Grandy was, but most of what they’ll know will come from photos and stories told by others. There won’t be those firsthand memories they can draw on…and that’s a hard thing to think about.

Over the last few days, Cindy has been getting up with me in the mornings to make sure I get safely out of bed and downstairs. After falling on Wednesday and Thursday, I completely understand her concern. And truthfully, it does make things easier. She makes my coffee…of which I drink only a few sips these days…and gets my pills ready. My only job is to make it to a chair by the fire. 🔥

But before I can even head downstairs, I have to handle the bedside bathroom situation. On Friday, as I sat on the edge of the bed preparing to stand, I felt myself sliding…my butt cheeks heading south while my feet skated on the hardwood floor. Let’s just say the toes weren’t doing their job. The space between the bed and the windowsill is tight, and falling there would’ve been a nightmare. So I threw my upper body back onto the mattress to stop the descent. It worked…but then I was half on, half off, and completely stuck.

Thankfully, Cindy is a light sleeper. She woke up and, in her groggy 4:00 a.m. voice, asked if I needed help. I managed to mumble some version of “yes.” She got me back into a sitting position, helped me stand, and from there I could get onto the stair lift and make my way to safety. It’s no wonder she doesn’t want to leave me alone.

As a fix, my side of the bed now has non-skid vinyl on the floor. Works like a charm. It’s amazing how many small tools and tweaks we can bring into this ALS world to help me stay as independent as possible.

I finished my latest book yesterday. Northwoods by Amy Pease. It’s a debut novel, for her, wrapped around a murder mystery, with subplots about post-war PTSD, drug addiction, Big Pharma, the opioid crisis, and greed. It does wander into some unbelievable territory, but it’s a good journey and a quick, easy read.

The new Dan Brown book, The Secret of Secrets, came in at the library this weekend. When Cindy handed it to me, I nearly dropped it. It’s heavy enough to qualify as strength training, and my hands aren’t exactly up to the task…especially when I’m reading in bed. Here’s hoping the story is worth the effort.

Speaking of weight. I tried to weigh myself, but our electronic scale doesn’t seem to like me wobbling when it’s trying calculate weight. After many attempts, I gave up…it was starting to feel like a fall risk.

PSA: If you haven’t taken your turkey out of the freezer yet, Thursday is going to be a disaster. Get on it.

Have a great Monday.
Love you guys! ❤️

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