Thursday, April 24, 2025

Thursday, April 24, 2025 — Day 254

Good morning! It promises to be a beautiful day—low 70s, sunshine, and a “bracelet brigade” arriving to string beads.

Look what you started, Nicole A.! So many people want to join “Andy’s Army.” Life doesn’t get much simpler than this: threading beads and forging a tangible bond between us all. Every bead feels spiritual—each one recalling memories from over fifty years ago, or fresh ones from just this past week. I thank you the only way I know how: a smile, a hug, a quivering lip, a few tears, and—yes—sometimes being absolutely speechless. After all, I’m Sally’s son—and I’ve inherited more of the Irish side than the Polish.

I’ve always cherished my Polish‑Irish heritage—two cultures built on hard work and perseverance. I wish I’d learned Polish, but with only one person in the house fluent (and always working), it wasn’t meant to be. Then again, after my high‑school Spanish experience, I’m not convinced I’m cut out for mastering more than one language.

Some days, I’m a little pissed about the hand I drew in life’s genetic lottery. “Why me?” I ask. Of course, there’s no answer—and I’m far from the only one nursing a pity party. So many folks are dealt tough hands.

That thought reminds me of John Prine’s song “Dear Abby,” which captures it perfectly, here is an excerpt:

(Verse 1)
Dear Abby, dear Abby
My feet are too long
My hair’s falling out and my rights are all wrong
My friends they all tell me that I’ve no friends at all
Won’t you write me a letter, won’t you give me a call?
Signed bewildered

(Chorus)
Bewildered, bewildered
You have no complaint
You are what you are and you ain’t what you ain’t
So listen up buster, and listen up good
Stop wishing for bad luck and knocking on wood

Yesterday, I got the results of last week’s overnight pulse‑oximetry test—the one where a clip on my fingertip records your blood‑oxygen levels all night. I dreamed I was stuck in a hospital, with Nurse Ratched popping in each hour to rouse me for vitals. Hospitals are the ultimate oxymoron: they steal your sleep in the name of healing, even though sleep is precisely what helps your body repair itself.

Back to the test: my O₂ saturation hovered between 90–95% most of the night, except for a thirty‑minute wobble when it dipped into the high 70s—felt like someone pressed a pillow to my face—before snapping back to normal. Maybe I was actually dreaming about “One Flew Over the Cuckoo’s Nest” during the night. The good news, the doctor isn’t worried, so I’m calling it a “pass.”

That said, I’ve noticed myself getting winded—climbing stairs or even walking to the mailbox yesterday (left the power wheelchair in the car—whoops!). Adjusting to this new device is still a work in progress.

My lung‑function tests have been the one bright spot since my ALS diagnosis, so I admit I’m anxious this may be changing… slowly, but noticeably. My next ALS clinic appointment is May 1—and frankly, that one scares me. My ALSFRS‑R score was 43 in October; I know it’s dropped since then, and I’m bracing myself to hear the official number.

On a brighter note, my cough‑assist device arrives today, along with a respiratory therapist. I don’t yet know exactly how it works or how it will help, so I’ll dive into the details in a future post. If it helps with the choking…this will also be a win.

Have a wonderful day—let’s make some bracelets!

Love you guys! ❤️

Photos from my swallow study. Couldn’t take any during the test due to the radiation.