Thursday, August 7, 2025 – Day 359

Thursday, August 7, 2025

Good morning to you all.

Housekeeping item I’ve heard from people that have subscribed to the blog, that the notification emails when I post an entry don’t always get sent. This leads people to believe I haven’t posted anything for the day. I don’t know why his happens.

Here is my suggestion. If by 8:00 am CST of each morning you haven’t received the email notification, please go to the blog and look for the post. I have not missed a day since I started sharing my story and I make a point of trying to have the blog updated by 7:00 am CST. So unless there are unusual circumstances, there will be a post every day until I tell you otherwise. I hope this clears up the confusion. Thanks for reading.

It’s another all day ALS Clinic!

Yesterday, Cindy asked if I wanted to bring a wheelchair or just use one of the hospital’s when we arrived. I gave it about five seconds of thought and said, “I’m walking in.” Why not? I’m still able—and I’m not ready to concede. Not just yet. Sure, using a chair is safer… but if I do fall, hey, at least I won’t have far to go. (That’s how my logic works)

With that settled, we decided to spend part of the day at the health club’s outdoor pool. The last time we went—just after Memorial Day—I made the mistake of lounging in one of those ultra-low chairs that are great for relaxing, but impossible to escape from without a winch. Cindy and I had to get very creative to get me out. Let’s just say it wasn’t our most graceful moment.

So this time, I brought the transport chair. See? I’m not completely stubborn. I can still sit in regular chairs and push myself up—if they’re the right height—but there are only a few of those on the deck. I didn’t want to gamble on availability. Plus, my butt starts to ache after an hour of sitting, and the transport chair is way more comfortable. Although… not perfect. My butt still ached after an hour. Next time, we’re bringing more cushioning. I’m turning into such a princess these days. 👑

I didn’t go into the water—I was still unsure about the feeding tube. I never heard back from my G.I. doctor about whether it’s safe to swim in lake water, which is why we wrapped my upper torso in 20 feet of Saran Wrap for paddle boarding last week. I looked like a dried prune after Katie finished waterproofing me. If you forgot what I looked like… search the photos from last week. I’m not exaggerating.

While sitting at the pool, I messaged my G.I. doc again—this time asking about swimming in pool water. This time, they actually responded. Apparently, two weeks post-surgery, I’m cleared for any water. Now you tell me! I guess we could’ve skipped the heavy-duty waterproofing in the Northwoods. But to be fair, after hearing and seeing Pete and Maria’s swimmer’s itch (see photo), I didn’t mind having a little extra protection. Now I just need to decide: do I go shirtless in the pool next time? 🧐

After the pool, we came home for lunch (roast beef sandwich), took a nap, and then headed to The Breakers at 4:00. It used to be a weekly tradition—same time every Wednesday—with a small group of Cindy’s high school friends. A couple of Mai Tais and a lot of laughs. We stopped going a couple of years ago, mostly because those Mai Tais tend to knock the rest of the evening off the rails.

When we walked in, everyone was happily surprised—like a scene from Cheers when Norm walked into the bar. It felt like we’d never missed a beat. I skipped the Mai Tai this time and played it safe with a low-ABV lager. No need to make the trip home harder on Cindy.

We were home by 6:30, I walked unassisted in the house. Small victory! This gave me a chance to unwind from what counts as a busy day in my world. I’m glad we shook things up a bit, reconnected with old friends, and added something different to the week.

Have a good Thursday—I’ll catch you up on my clinic visit and ALS updates tomorrow. Love you guys! ❤️