Tuesday, March 4, 2025

Tuesday, March 4, 2025

Day 203

Good morning!!

Welcome to another Tax Tuesday—but not just any Tuesday. It’s Fat Tuesday! Every tax season, I make a weekly stop for donuts, but today is special. It’s Fat Tuesday which means it’s Pączki Day. If you miss them today, it’s a full year of waiting. Country Donuts is the best and they’re five minutes from the house. So everybody will be happy when they see me today. Btw…my personal favorite is black raspberry.

Yesterday, I received an email from ALS News Today. They send out newsletters every few days, I look for clinical trials—which is why I subscribe. I’ve reached out about a few trials that seemed like a possible fit for my familial ALS, but nothing has panned out yet. 🙁

In the body of the e-mail was a story about ALS Progression and Timeline. I thought, I already know all this, but maybe I’ll learn something. As I perused the the article, I saw a chart on the four stages and some Key bullet points. The chart breaks ALS into four stages, from early to end-stage. This “early stage” is said to last about a year…well I’m nine months in. That was a wake-up call….at 3:01 AM this morning. I’d like to believe I’ll stay in this stage past June (when I first noticed symptoms in 2024), but for how long is the question that haunts me. As for the later stages? I do my best to ignore them. And that’s exactly what I’m going to keep doing—for now. These stages are just to scary to confront…especially when your eating pączki. So I’m putting my head back in the sand.

For those of you who joined my journal late—sorry, that wasn’t the plan. I originally started this for the kids, but it grew from there. Now I’m working on bringing my older posts into the blog. I’ll admit I’m cheating a little, editing for spelling and grammar.

These entries start Aug 23, which is 10 days after my diagnosis (August 13, 2024) and go to Dec 30. The 10 day from the diagnosis to my initial post consisted of text exchanges with the kids as we processed what the hell had just happened.

My goal is to get those early posts uploaded by the weekend. I’ve got some work to do, the word count from August 23 to December 30, 2024, is nearly 25,000 words. 😱 Holy cow. Either I repeat myself a lot, or I’ve had more to say than I thought. I’ll let you be the judge—assuming you have no that much free time and interest to read them.

Now, for a quick “What was I thinking?” moment from last week… I was heading upstairs to shower and get dressed (must have been a tax day). In one hand, I had a mug of coffee. In the other, my phone. Which meant no cane and no banister. If you’re thinking that sounds dumb, you’d be right.

I stepped up with my right foot—no problem. But when I tried to lift my left leg, nothing. I leaned against the wall, thinking that would help, but my left leg disagreed. So there I was—coffee in one hand, phone in the other, completely stuck. I couldn’t go forward. I couldn’t go backward. And spilling my coffee? Not an option.

I had no choice but to call for help. Cindy arrived, took the coffee and phone, and saved me from myself. She was kind about it and just said, “Just ask, and I’ll help you.” No coffee spillage. No Andy spillage. Whew. That was a close one. I really need to reach out for help more often…I’m working on it.

Have a great Tuesday!

Love you guys !❤️