Monday, March 31, 2025 - Day 230

Monday, March 31, 2025

Good morning, and welcome to Monday—the last day of March.

I spend a lot of time staring at the calendar, counting the days since my diagnosis and looking ahead to the future. I’m trying to plan for what ALS will take from me so we can be as prepared as possible. The bathroom remodel and stair access are behind us (almost, anyway), so now we move on to the next set of challenges.

Friday night at dinner, I got hit with one of those surprise moments. While I’m highly tuned to my ALS progression, nothing quite prepares you for the little wake-up calls—like realizing that lifting a four-year-old onto your lap feels like hoisting an engine out of a farm tractor.

I tried to pull Wyatt up, and it was… a struggle. I had to stop and ask myself—when did my upper body get this weak? I mean, come on, he’s a skinny four-year-old! How heavy could he be? This should have been an easy-breezy, one-arm scoop. Instead, it felt like I was trying to lift Jelly Roll (the singer, not the pastry) onto my lap. Wyatt must have heard me muttering about it because when we got home, he immediately weighed himself—38.8 lbs. Just for reference, that’s about the same as Bear (the dog, not the actual animal). Meanwhile, Jelly Roll is a trim 400 lbs (down 100!), and I’m fairly certain I’ve never been able to lift that much, so maybe I should cut myself some slack.

So, we keep planning ahead, trying to stay in front of the physical limitations that are coming. We don’t want to get caught off guard and have to scramble for solutions we should have seen coming. So far, we’re staying ahead of things, but I know we can’t prepare for everything—there are still plenty of unknowns. That’s something we’ll need to bring up at the next ALS clinic on May 1.

Yesterday, we went out to test drive scooters at a medical supply store. While my heart is set on an e-bike, my brain is telling me to be practical. Needs versus wants. I have to stay ahead of this, or I’ll find myself stuck—literally. It reminds me of what Nicole told me last week at Costco when I hesitated to use the store’s scooter: “Costco > Ego.” Short. Brutal. Accurate.

Turns out, there are a lot of scooter options.

As soon as we walked in, there it was—a lightweight carbon scooter practically screaming, Ride me! It weighs 39 lbs (which is now officially “too heavy for me”) and tops out at 3.7 mph. Price? $3,200. It folds up nicely, making it easy to transport—if you’re someone who can actually lift it. I can’t, but Cindy could get it off the ground. We didn’t test whether she could get it to waist height, though… that might be her Jelly Roll challenge.

From there, the scooters only got heavier and harder to transport. But on the bright side, they got faster, more comfortable, and loaded with fancy features—lights, turn signals, cup holders, horns, and even a hitch. A hitch! For what, exactly? What am I towing? A parade float? Good to know I have options.

Then, we met The Beast: a four-wheel-drive scooter that goes 14 mph. No question—it was my favorite. I wanted to buy it on the spot. Sure, it’s nearly impossible to transport without a hitch carrier, but we were only a couple of miles from home, and I could have just driven it back. If it weren’t for the rain, I might have. Even better? It cost less than the ultra-light carbon model we looked at first. So really, it would have been the responsible financial decision.

So maybe the e-bike dream is fading, and I should focus on getting both an outdoor scooter and an indoor scooter. I probably don’t need all three, right? (Right?) One question that keeps popping into my head: what makes sense for Fence Lake? I still wouldn’t be able to get down to the lake itself—unless we want to drop $50k+ on a stair-climbing wheelchair. Even then, with those steep stairs, I’m not sure I’d be brave enough to try. That would be terrifying.

So, I’ve got some decisions to make. If I’m being practical, I think it’ll come down to a sturdy outdoor scooter and a small, nimble one for inside the townhome. At the very least, I should pick something that won’t leave me stranded halfway home in the rain.

Yes, I’m all over the map on this. That’s the problem with a blog—you have to ride along with me as I overthink my next steps for dealing with ALS. Sorry about that. But I am grateful for all the advice I’ve been getting as I sort through the options. I’m listening.