Thursday, March 27, 2025 -Day 226

Thursday, March 27, 2025

Good morning, everyone.

It’s another weekday that begins with a “T,” so it must be a tax day. Somehow, I think you’re as tired of this day as I am. I’ve certainly talked about it too much. It’s been a great year, and I’m so happy to be doing tax preparation, but I feel guilty telling people I’ll see them next year when I know that’s not true. Sure, it’s only a white lie, but it’s still a lie. I wonder if they can see it in my eyes when I say it. Maybe a miracle will happen—maybe this ALS thing will stop progressing, reverse course on its own(I’ve always believed in my body to fix itself) or a successful clinical trial will be waiting to save me.

Speaking of clinical trials, every now and then, I check the government website for any potential trials that might fit my type of ALS. For new readers, I’ve inherited a genetic mutation called SQSTM1 which is linked to ALS. These genetic mutations make up 5-10% of the 5,000 newly diagnosed ALS cases each year—so roughly 250-500 cases per year. When I went through genetic testing, there were 31 known genetic mutations linked to ALS, up from just a handful a few years ago. I don’t know if that number has changed since late last year. I think my mutation is one of the more recently identified ones, it’s a bit late to the party, so there hasn’t been much development in terms of possible treatments—at least, none that anyone is telling me about.

The primary mutation getting all the attention is SOD1. So when I search for trials, they’re mostly focused on that. I’ll keep waiting and looking… someday they’ll figure this out, and maybe—just maybe—it’ll be this year.

Yesterday, Cindy picked up the new stair rails. They didn’t have 16-footers, so we had to go with four 8-footers. She chose oak, and we had the option to stain or paint. Painting was the better match for the wood banister the builder installed and I didn’t want the contrast stained rails against the white. I had some time yesterday and figured I could do something around here other than sit around. So, with Cindy’s help, I set up a work area in the garage, parked my caboose in a chair, and got to sanding. Once that was done, I locked the rails onto a workbench, pulled up another chair, and started painting. So, I guess I was still sitting around—but at least I was being productive. I actually love doing projects. It’s been a hole in my life the last six months, and I really miss it.

This small project took me a couple of hours, but I managed to get the first coat of paint on the rails. My biggest challenge came afterward—getting down to the basement with a wet brush and a small paint holder while balancing on my wobbly legs. At least I was going down, so my arms didn’t have to work as hard. Going up the stairs, I need my arms to help pull me up. So with some careful leaning and perfectly placed hands on the banister (all the while keeping an eye on the paint brush and paint holder, I made it down without incident. One challenge left: twisting the doorknob open. Again…watching the items with wet paint and turning the knov carefully…finally, I was in the utility room. I thought to myself, I’ll have to check my path for whoopsies—just to make sure I didn’t leave a crumb trail of paint. I don’t want to add any more stress to our life.

After cleaning up (while standing, no less), I went back upstairs, inspecting as I went. Whew—no rogue paint spots! I plopped onto the couch, closed my eyes, and took a quick catnap. 😴 That simple task had wiped me out.

Not long after I sat down, Cindy called down to ask if I’d be ready to leave by 4:00. We were meeting Kathy and Gary at Breakers Tiki Bar. It was only 3:20—plenty of time to get ready. I didn’t need a shower; I’d had one on Tuesday, and a little light sanding and painting didn’t warrant another. Besides, 40 minutes isn’t nearly enough time for me to shower. So, I climbed the stairs, changed my clothes, brushed my teeth, and thought about doing something with my messy hair. But when I looked at it… it was perfectly messy, so I left it alone. I slow-walked back downstairs, and somehow, 30 minutes had passed. How did that take 30 minutes? Then I put on my shoes—another 5-7 minutes gone. By the time I was ready, it was just about 4:00. Cindy was smart to start getting me moving at 3:20—she definitely knows how slow I am.

We had a great time at dinner, laughing and talking until almost 7:30. A few mai tais, some Chinese food, and good friends—what more could you want?

Well… it’s getting late, and I need to get my morning moving.😉

Have a great Thursday. Love you guys! ❤️