Thursday, June 5, 2025 – Day 296

Thursday, June 5, 2025

Good morning everyone—I’m Andy!
A new day to be thankful for.

It’s a good thing we have access to an ALS Clinic that consolidates so many of our appointments into one day. If we had to spread them out across the week, I don’t think we could keep up. Between pulmonology, neurology, PT, OT, and “WTF-is-this-now?” visits (making Bear go crazy), it’s a full-time job just staying on top of it all.

On the pulmonary front, my breathing machine was delivered yesterday by a respiratory therapist named Jessica. Super kind, very professional, and—thankfully—not phased by my questions or my sarcasm. I’ll admit, I’m not thrilled about hitting the ALS milestone of needing a breathing machine.
 But I am grateful the process was smooth: pulmonologist on Tuesday, machine on Wednesday. The equipment is surprisingly user-friendly, but let’s be real—the first thing I thought when I saw the mask was: How do you sleep with this thing? 😵‍💫💤

Here’s the kicker—I’m a stomach sleeper. Have been my whole life.
So the idea of being on my back with a mask strapped to my face? How the hell am I supposed to function during the day if I spend the night locked in my bedding and simultaneously feeling like I’m being suffocated?

I went to bed early, determined to figure it out.
 Took a couple of those CBD mints Nikki and Zack brought for Cindy a while back—turns out they help me sleep, even if I still wake up at 3:30 a.m. (That’s by choice, by the way. I like writing early. Weird, I know.)

With Cindy’s help, I got the mask situated, fired up the machine, put on my glasses, and grabbed Sudden Prey—book #8 just arrived, and I loved Mind Prey, so I was eager to dive in.

Then reality struck.

As I laid back, the sound of the machine kicked in.
Inhale… exhale… inhale… exhale…
It instantly transported me back to my scuba diving days. That same slow, deliberate rhythm. Mechanical hiss in, hollow whoosh out. Peaceful… in a strange way.

But then I lifted the book and—bam!—ran into a new problem: the respirator mask was blocking my line of sight.
 I raised the book higher, but now my arms were over my head and ready to mutiny. Nope. Not sustainable. Book went back on the nightstand.

Plan B: TV.
Turned it on… but the hiss of the respirator completely drowned out the dialogue.
So that lasted about 45 seconds. Plan C:
Shut it all down. Embrace the white noise. Let the CBD do its thing. Surrender to the sleep gods.

And—surprisingly? It worked.

I had to fuss with the mask a few times, but no marathon tossing or turning.
Between the soft rhythm of the machine and the mellow magic of CBD, I woke up feeling rested.
 According to my Apple Watch, I actually slept well.
 And yes—I snapped a screenshot like a proud nerd. Evidence matters.
(Disregard the times on bedtime and wake-up… they’re meaningless.)

This machine is now a permanent fixture in our bedroom, and I have no doubt it’ll become one of the most important tools in my daily life.
 Because when it comes to quality of life… breathing is kind of a big deal. (Obvious, I know.)

In the morning yesterday,,our friends Don and Sandy stopped by. They weren’t able to make it to the open house, but they made time to visit while they were in Crystal Lake from Galena. It was a short visit—but a meaningful one.

Like so many of you, they feel the weight of this diagnosis, yet they haven’t stepped back. 
They show up. They support.
They help us feel normal—even when everything is changing.

As hard as ALS is to face, I’m deeply grateful for everyone who’s walked alongside us and hasn’t flinched.

Thank you for everything you do to lift us up.

Have a great Thursday.
 Love you guys! ❤️