Friday, August 8, 2025 – Day 360

Friday, August 8, 2025

Good morning, and thank you for joining us today. When I say “us,” I mean the collective group of friends and family who have walked alongside us on this ALS journey. Whether you’ve been here from day one or this is your first time reading the blog—we welcome you. I honestly hate to think about where we’d be without all of you. Thank you for hopping on board.

I keep looking at the number of days since my diagnosis (360), and it’s hard to believe it’s been nearly a year since I heard those numbing, frightening words from the neurologist: “I think you have ALS.” I couldn’t even process them. My mind jumped straight to: Life as I’ve known it is over. How do we go forward? What will this look like?

Well… we’ve managed. And that’s because so many of you have kept asking, “What can we do to help?” Over the past year, we’ve tried to do as much as we can on our own, but when we’ve needed physical help—you’ve been right there, pitching in.

But you’ve done something far more important than just lighten our physical load—you’ve enriched our emotional, mental, and social well-being. This past year has been full of memory-making with people we love, that we’ve even managed (occasionally) to forget about the shitty diagnosis. Sure, it’s always there, but we’ve handled it… and I think we’ve handled it well—because of you, and because of ALS United.

Which brings me to our ALS Clinic visit yesterday. It was another long day of evaluations by the many disciplines assigned to help us. Every person who knocked on that exam room door has become more than a clinician—they’ve become a friend. They want the best for us and do everything possible to make living with ALS easier. Sometimes I push back. Not because they’re wrong, but because while I might have reached the physical point of needing something, I haven’t always reached the mental point of accepting it.

Case in point: I’m at the stage where a walker would reduce my fall risk. Having fallen 12 times, I’ve been lucky not to break anything. The next fall could be a disaster, so my team wants to help prevent it. But I’m not quite ready to embrace a walker. For now, I’m sticking with my canes. I’m moving more deliberately, working hard to prevent more falls. When I feel it’s truly too risky, I’ll accept the walker—just like I’ve accepted everything else this disease has thrown at me. Everything in good time.

Overall, yesterday’s clinic was a success. The biggest takeaway from all the functional strength testing? Compared to my May visit, the disease has only shown a small progression. That’s incredibly positive news. Yes, I’m weaker—but I’m doing better than I expected. That was a much-needed pick-me-up.

One of the most important updates came from the pulmonology tech: my lungs are functioning at 71%. While I’ve noticed some shortness of breath here and there, I’m still doing great in the breathing category—at least in my opinion. That’s assuming I don’t fall off any more paddleboards into giant wakes.

We also had a long visit with our care coordinator, Peggy. She knows a surprising amount about our daily life because she reads this blog, but she still listens intently, offers advice, and acknowledges our emotions—mostly mine. Peggy cares deeply, and her love is so strong that every conversation with her leaves me with tears in my eyes and my voice locking up. I had thought—wrongly—that my pseudobulbar effect was under control. Not so much. Thankfully, Cindy is always there to speak for me when my voice fails.

Side note: I did get a prescription to help control those emotional outbursts, but the pills were the size of horse tablets, and every attempt to swallow them ended with me choking them back up. That was a $2,000 experiment that failed. Today, I’m trying a new prescription. We’ll see how that goes.

The day ended on a delicious note. We stopped at Culver’s on the way home for some tasty calories, and I was able to eat without too much trouble. Another small win that helps keep my weight above 150 lbs.

Have a great Friday. Love you guys! ❤️

Photo 1 with Peggy (sitting)

Photo 2 with Francie who is retiring (standing). Francie has been there from day one…she’s behind the scenes support and she answers many of my questions between visits that I have for the neurologist. Happy retirement Francie!! 🛍️🍾🥂

Photo 3 of me reading my pulmonary results.