Saturday, June 21, 2025 – Day 312

Saturday, June 21, 2025

Good morning!

It’s going to be a hot one this weekend. Good thing I’ve got a solid stack of books to keep me company—because I’ll be staying inside for most, if not all, of it.

Thank you to everyone who’s sent reading material for my ALS journey. Books are the perfect escape. Once I’m absorbed in a story, I can forget about ALS for a while, and that kind of distraction is gold. Plus, I get to expand my mind… assuming reading about serial killers counts as intellectual growth.

Lately, the reading pile has grown in fun and unexpected ways. Tom and Pam sent me an audiobook—which I need to start. Di gave me a couple of nicely wrapped books tucked into the basket of my new bright red walker. Lis has delivered a treasure trove: books on the history of bourbon, the firebombing of Japan in WWII, and the Irish potato famine. Fred, my neighbor, drops off a new book nearly every week, hot off his own reading list. And Paul Z. gifted me the perfect bathroom book—short, insightful stories about the quirks of everyday life.

Thanks to all of you for these thoughtful contributions. I love reading books that others have enjoyed and passed along.

Yesterday, we had the 14-day follow-up with Jessica, the respiratory therapist. She stopped by to see how things are going with the ventilator—any issues, questions, or concerns. Overall, the mask is working well. I’m sleeping better, and the soft, rhythmic hum of the machine helps lull me to sleep. But that dang alarm keeps waking me up at night to inform me I’m experiencing sleep apnea. Why wake me up to tell me I stopped breathing—especially if all I’m going to do is silence the alarm and go back to sleep?

If I’m being completely honest: I figured out how to unlock the machine’s setup menu and found the option to disable the apnea alarm. Jessica didn’t raise any red flags when she reviewed the usage stats, so if I don’t hear anything back, I’ll likely turn the alarm off. And if it turns out to be something critical, they can always tell me to turn it back on. Sleep first, scolding later.

I also spent some time on the phone with the hospital about Monday’s feeding tube procedure. They changed the scheduled time and walked me through the latest do’s and don’ts. I’ll be sure to follow the instructions—no need to complicate things now.

We had a good talk with the nutritionist, too. She’s developing a plan to ensure I get 100% of my daily nutritional needs—either entirely through the feeding tube or a combination of tube feeds and oral intake. There’s a silver lining here: I’ll be able to get all the calories, protein, and nutrients I need, and best of all, it’s covered by Medicare. That’ll soften the grocery bill. And when I eventually go fully feeding tube? Even bigger savings. Gotta take the wins where I can.

We closed out the day with a trip to The Breakers with Mark and Barb. Everyone was craving Chinese food and those potent Mai Tais (and I do mean potent). I stuck to my two-drink limit, but the ABV was more than I could physically handle. The exit to the car was… let’s just say, assisted. I had various hands on me to keep me from tipping over. Once we got home, it was straight to bed—no need to be wobbling around the house and stressing Cindy out. I read for about 5–10 minutes and then called it a night.

I think it’s time to bring the red walker along on all future excursions involving alcohol. My tolerance is practically nonexistent, and it doesn’t take much to put me over the edge. Another place where I save $$. Thanks again, Di. The walker is going to be seeing some action soon.

Have a great Saturday.

Love you guys!❤️