Tuesday, January 14, 2025

Monday, February 3, 2025

Good morning from the Heartland!

This time of year, waking up to single-digit temperatures—or worse—is just part of the deal. Yesterday was one of those frigid mornings, so, of course, the fireplace is the first thing to turn on…ahead of the coffee maker. There’s nothing like the instant comfort of plopping bare feet onto the fireplace hearth and feeling the warmth of a fire. I recommend it to everyone!! And our swivel chairs? Game changers. They let me gracefully rotate between grabbing essentials—coffee, water, maybe a beer—while still staying snuggled in my cozy spot.

When Maria visited this past weekend, she was all about those chairs and the fireplace and spent a good chunk of time snapping photos of the setup. Her mission? Convince Pete to install a gas fireplace in their new addition to the Minocqua house. So far, Pete remains staunch in his position….NO! This back-and-forth between them has been simmering for years now. My money’s still on Maria; she is playing the long game and will eventually wear Mr. Peachy out.

Anyway, speaking of the fireplace and cold weather, here’s the thing: I settle in so well in the mornings that before I know it, the entire morning has slipped away, and I’m still in my pajamas. Case in point: yesterday. Cindy’s friend Mary showed up at 10:30 am with flowers to surprise her for her birthday. Cindy was on a conference call with friends on the West Coast, leaving me to greet Mary—looking like I’d just rolled out of bed. Guess that’s what happens when I avoid getting dressed before 2 pm. No regrets.

Later, we went out to dinner with Barb and Mark at our go-to pizza spot. Our routine there is so predictable it’s practically scripted: Mark and I always grab Zombie Dust beers, Cindy and Barb go for wine, and we all share a large thin-crust Papa Georgio pizza with salads for the ladies. Oh, and let’s not forget the supersized beverage pours…because why settle for regular when you can have a BIG ONE? Throughout the evening, whenever Cindy was talking, she put her hand over my mouth to keep me from interrupting…no matter what I had to add. That’s one way to keep the floor.

We were back home by 6:30, just in time for an Apple TV binge. While we were at Georgio’s, I’d finally caved and subscribed to Apple TV so we could check out Ted Lasso. Everyone says it’s the feel-good show of the century. Cindy and I don’t usually agree on TV shows…she’s all about light and funny, and I’m more of a mystery-suspense guy. Last night was different, with us both settling in for something new and different. I made it through the first episode before conking out. Cindy watched a few more episodes, but don’t quote me on that—I was sound asleep and dreaming of pizza and Zombie Dust after the first episode.

Here is the heavy part of today’s journal…

Yesterday marked the 6-month anniversary of my ALS diagnosis by Dr. Post. The memory of that day is still vivid and deeply unsettling. I can still hear the weight in his voice as he said, “I hope I’m wrong, but I think you have ALS.” At that moment, it felt as though the world stopped spinning. Everyone in the room—Barb, Cindy, the nurse—all of us were paralyzed in disbelief, silently hoping that the doctor had made a mistake. He seemed too young, too inexperienced to provide such a harsh diagnosis. He advised us to get a 2nd opinion and hoped he was wrong.

Six months later, there’s no more room for denial. The diagnosis is undeniable now, and my focus has shifted to confronting the disease’s progression. As I’ve shared before, ALS progression is tracked using the ALSFRS-R, a scoring system that assesses physical abilities across 12 key functions—walking, eating, sleeping, swallowing, and more. Each category is scored from 0 to 4, with 48 being the highest possible total. When I left the hospital in August, my score was 43. I remember asking the doctor what to expect regarding progression, but he couldn’t provide much insight after just a few days of tests. The standard answer I’ve heard from every neurologist since is that the average ALS patient loses about one point per month.

Initially, I tracked my score weekly, every Wednesday—the day I first received my ALSFRS-R score. For a few weeks, nothing seemed to change, but when I shared this habit with the ALS clinic coordinator, she gently advised against it, suggesting it might only add unnecessary stress. I followed her advice and stopped monitoring my score so often. That is, until yesterday. I decided to reassess, approaching the 12 questions as objectively as I could. When I finished and totaled everything, my score came to 37. No math errors…I was using Excel. Most of my scores are 3s, with a few 4s—mostly tied to my breathing, which remains strong. But there are also a couple of 2s now, notably in walking and stair climbing, areas where my struggles are increasingly apparent to anyone who sees me.

This rate of decline aligns almost exactly with the expected rate of decline, being one point per month. While it’s difficult to admit, I now have a clearer picture of how my ALS is progressing. It’s painful to acknowledge…no it sucks…there’s no way around that. Losing six points in six months is a harsh reality, and it’s hard not to feel the weight of what that might mean for the future.

Still, even in the face of this shitty disease, I’m determined to keep living as fully as I can, enjoying every moment and doing everything within my power. As someone told me the other day who has a sibling with ALS…you have to be ornery to live with ALS. Is that a good trait to have…being ornery??? I just want to face this and keep living with a smile on my face, enjoying our time together. It’s far from easy, but it’s the choice I have, and I’ll keep at it. I hope you will all stay with me.

Have a great Tuesday.

Love you guys! ❤️