Wednesday, October 8, 2025 – Day 421
Wednesday, October 8, 2025
Good morning, world!
I love these mornings when the air is cool—but not cold—and I can turn on the fireplace. It makes for a cozy spot to sip my hot black coffee and think about life.
The other day Marilyn said how much she enjoys reading the blog and it’s part of her morning ritual, as I’ve heard many tell me. She asked me if I would keep writing. It’s a question I ask myself often. I know this morning ritual we’ve built together could eventually grow repetitive as my social activity slows down and the ALS symptoms become more debilitating.
But for now, I’ll keep writing. I’ll take this blog as far as possible and do my best to bring you into my thoughts, challenges, and fears. I don’t know what the timeline looks like, but there is an end date. We all know this. I keep seeing the changes coming at me and I keep adapting—one hurdle at a time. They’re getting harder, but I’m still here, still pushing. Remember…I am stubborn.
Let’s talk about the bed.
I like to read in bed—daytime or bedtime, doesn’t matter. Simple, right? Well… not anymore. Our bed sits fairly high off the ground, which means I have to bring one knee up, then use my arms to lift myself the rest of the way. I can still do it, but I catch myself grunting and putting in some serious effort just to get up there.
Once I’m finally on the bed, getting the pillows arranged is another challenge. If they’re not just right, my neck pays the price. I try to set them before I lie down, but it’s never perfect. I reach behind my head to adjust them, but since I’m half-sitting on them, they won’t budge. With my core and arm strength fading, it turns into a slow wrestling match—lots of wriggling and tugging until I get it right. I still manage, but it’s getting tougher, and it wears me out. When Cindy’s nearby, I don’t hesitate to ask for help, but she’s juggling a hundred things, so I try not to interrupt unless I really need her.
And then there’s the reverse process—getting out of bed. What goes up must come down. I roll onto my side, inch to the edge, and slowly push myself up to a seated position. Then I swing my feet down and shuffle to the foot of the bed where my walker waits. There isn’t enough space alongside the bed for it, so I use the mattress for balance until I can grab both handles. That’s one of many daily challenges now. I’m grateful there are ways to adapt, but everything takes extra effort, patience, and time.
I feel like I’m complaining today, and I don’t want my message to sound that way. I’m still doing well—mentally and physically—and I want to keep that going as long as I can.
So today’s a new day, and we’ve got a little entertainment planned. The potato gun is coming out because we (really, Mark) will be putting up the Moravian star—it hangs about 50 feet up in one of the backyard oaks. With the shorter days…it’s nice to look up in the sky and see a bright star to bring hope.
Should be a good show. Bring popcorn. Have a great Wednesday. Love you guys! ❤️
Photos today.
Peggy, our Angel, along with her dog Riley.
CLHS friend Jody at a new business in Crystal Lake that her son is opening, called Lake Roots. For more information, click on the following link.
