Saturday, May 24, 2025 – Day 284

Saturday, May 24, 2025

Good morning sibs, kiddos, grandkiddos, friends, and curious minds—

Our home continues to evolve. We could probably use a storage unit just to house all the adaptive gear that keeps showing up. Although let’s be honest—if it were offsite, we’d never actually go get the stuff when we need it so we’ll just put household stuff in storage to make room.

Yesterday’s new arrival: a stairlift. Going up and down the stairs several times a day has become a real challenge, and my PT strongly suggested I cut back on the stair hikes. So, in a rare act of full compliance, I’ve used the lift for every single trip since it was installed. See? I can follow directions… occasionally… even though it’s been just one day.

Now, you might be wondering: what happened to the Liftkar we got last week? Well, it’s still in play—but it turns out it’s not ideal for daily use at this stage. For one, it requires a second person to operate, and Cindy’s not quite ready to be my Sherpa just yet. Also, she’s especially not interested in wheeling me down the stairs at Eugene (my dad) o’clock in the morning. Others might refer to it more colorfully as “the butt crack of dawn.” Whatever you call it, Cindy has no affection for that hour. Personally, I kind of like it.

The Liftkar will still come in handy, especially when we travel to places with stairs—like our happy place up north. The stairs to Fence Lake are way too steep for me, as I learned the hard way over Easter. That was fall #7.

It feels like there’s always something to prepare for—another step to try and stay ahead in this ALS journey. Lately, I’ve been working on getting a feeding tube. It going to take a couple months or longer to get this done. I can still eat, but not nearly enough to maintain my weight or get the nutrition I need. My appetite has pretty much vanished—no cravings, no real hunger—and while some of you might think that sounds like a dream, in my case, it’s likely speeding up the disease progression. The pounds keep falling off and I have a September wedding to attend. Alex and Nicole, I’m trying to keep my legs functional for the big day!

When I was first diagnosed, the feeding tube felt like a hard stop. I figured if I couldn’t enjoy eating, what was the point? In my mind, it was a quality-of-life issue. But that perspective has shifted. Now I see the tube as part of maintaining that quality of life.

Without better nutrition, I won’t have the strength to keep fighting ALS. I’m tired a more and more these days, and if better nutrition can help with that, I’m in. And yes, I know some of you are thinking, “Maybe if you didn’t get up so flipping early…” Maybe. But I’m averaging more than seven hours of sleep most nights, which feels pretty reasonable. If fixing my nutrition doesn’t help, then maybe I’ll consider sleeping in…until 5:00 am

Yesterday, we snuck out to Sew Hop’d Brewery to soak up some sun after a long stretch of chilly, wet weather. Cindy’s high school friends Gary and Mary Ann joined us. Barb and Mark stayed home to recover—they’ve had a houseful of family this past week and needed a breather. We don’t get to see Gary and Mary Ann often, so it was a great chance to catch up on kids, grandkids, life, and yes—my ever-evolving health saga. Oh, and hand out more Andy’s Army bracelets. Thank you for the support!!

Time flew by. I hit my two-beer limit, and we headed home before things got too wild. Thanks for the fudge, Mary Ann—those extra calories are going straight into the “weight maintenance” column.

It’s time for breakfast, I wonder what my personal chef has on the morning menu. Maybe it’s leftover steak and eggs. Personally, I’ll eat whatever she wants to make. I’m thankful she is willing to do this for me. Maybe she’ll want to go out for breakfast. That sounds like a good plan.

Have a great Saturday.

Love you guys!❤️