Thursday, May 8, 2025 – Day 268

Thursday, May 8, 2025

Good morning! 😃

Some mornings, I wake up feeling like the same guy I’ve always been—coffee sounds good, sunshine looks nice, let’s see what the day brings. And then I rollover, plant my feet on the floor and go to stand. Sorry… back to reality. Each morning I’m reminded of where I am with ALS and the new challenges arising. Breathing wants a front row seat.

When I was diagnosed last August, my breathing numbers were surprisingly solid. “Better than average for a guy your age,” they said. (I’ll take “above average” anywhere I can get it these days.) But now, nine months in, things have shifted. At last week’s ALS Clinic visit, the drop in scores was clear—not alarming they told me, just worth watching. Which, of course, is like telling someone there’s a crack in the dam, but not to worry unless the water gets really high.

Then came Monday, and a casual check-in from my care coordinator: “Are you sleeping okay? Any morning headaches?” Nope! Sleeping fine. No headaches. Life is good.

And ever since that conversation? Cue the midnight headache parade. It’s like my brain said, “Oh, we’re supposed to be having headaches now? Got it.” Three nights in a row. I haven’t taken anything for them yet because I don’t want to mask what might be a real issue. Maybe it’s CO₂ buildup, maybe it’s stress, maybe it’s the power of suggestion working overtime, maybe it’s nothing. Whatever it is, it’s new, and I’ll be letting the medical team know.

Now…let’s move on to something to smile about. On to something that definitely wasn’t nothing: GOLF!

Yesterday, I played nine holes with Tim and Bill Brolley. If you’ve seen those PT videos of my balance and swing from Friday, you’re already wincing. I was half-expecting to end up face-first in the fairway, maybe three times.

There I am on the first tee: five iron with a built-up grip (thank you, Amanda), offset stance to stay upright (thank you, Diane), Tim setting the ball like a PGA forecaddy, and Bill giving me swing tips like some PGA professional…whoops he is a PGA professional. Sorry Bill.

If you play golf, you know that’s a lot of adjustments—and adjustments usually mean disaster. But I’m not here to perfect muscle memory. I’m just trying to keep and use what muscle I’ve got left. Forget retraining—I’m in the “ride it till the wheels fall off” phase.

I wobble into position, using the club like a cane just to get my feet set. My “catchers” are in place—Tim behind, Bill in front—ready to spring into action. I hope they’re clear of the club, because friendly fire is a real possibility. I start the backswing—all arms—halfway back, no weight shift, just a prayer and some momentum. The downswing feels like an out-of-body experience, which is fine, because I kind of don’t want to witness it. And then… contact. I hit the ball! No whiff (not yet anyway) on the first tee. It takes off low, goes maybe 50 yards, but mostly straight and definitely off the ground. And—drumroll—I didn’t fall. That alone made it a successful outing. Tim and Bill were cheering like I just won The Masters. And honestly? Might’ve been a good time to quit while I was ahead.

But we kept going. Played all nine. Tim and Bill drove me from shot to shot—sometimes to where my ball might’ve gone if it had a little more ambition. They shortened the course, fluffed my lies, got me right up to the greens. I didn’t keep score, but if we’re judging by “joy per swing,” I won. Ninety percent of my iron shots were decent (with the other ten percent providing comedic relief). I was exhausted by the end, but emotionally? I was buzzing.

We finished with fist bumps and a celebratory beverage at the bar. It was a great day.

To Tim and Bill—thank you. Seriously. You didn’t just help me play golf. You helped me feel like me again for a few hours. Out in the sun, with people I love, doing something normal even if it took extra effort. I couldn’t have done it without you. And I wouldn’t have wanted to.

Oh—and one more bonus: I had figured I’d fall at least three times, what with the sloped terrain, uneven grass, and swinging a metal stick in the air. Final count? Zero. Not a single fall. Chalk it up to luck, support, or maybe just sheer stubbornness.

Let’s do it again. Maybe next time, we bring a drone, just in case I get ahold of it and the ball flies past your field of vision. Ha ha.

So today is a rest day. I suppose I’ll keep reading. My anonymous book fairy sent me book #4, Silent Prey, of the Sandford Prey series. I’d say it was a little premature…I’m not finished book #3. Must be that you, whomever you are, want to make sure I’ve got a book in reserve. I’ll let you know when I’m done with the book #3. 📖

Have a great Thursday.

Love you guys! ❤️