Saturday, March 1, 2025

Saturday, March 1, 2025

Day 200

Good morning, and welcome to March!

Today is a much-needed rest day. The week has been nonstop, and my body has had enough. The legs are worn out, my tongue has staged a protest, and my overall energy reserves are in the red. Let’s just say I wasn’t exactly practicing energy conservation this week.

It’s 4:50 a.m., as I sit here reflecting, I realize—I had a good week. A great week, actually. I saw so many friends, and we laughed the whole time. My heart is full, my soul is recharged, and I’ve been absolutely spoiled with love.

Friday Recap: PT, OT, and Scary Drivers Yesterday started early—0730 PT and OT at Glenbrook Hospital. I wasn’t exactly thrilled about driving through the morning rush hour. The drafting and aggressive lane changes were less “morning commute” and more “NASCAR with insurance premiums.” Sixty minutes of white-knuckle driving later, we miraculously arrived in one piece, where I gladly handed the car over to the valet, began the slow walk into the hospital.

Inside, we made our way to the waiting room—by “made our way,” I mean I plopped into a chair with all the grace of a felled tree. The constant focus on not falling is exhausting, and my left wrist still protests from the five times I’ve failed that mission. A sixth fall could mean something worse than a bruise, and that’s not a gamble I want to take.

Physical Therapy (PT): Leg Day Maggie, my PT, who I know from the ALS Clinic, is young, energetic, and always smiling—a quality I both appreciate and envy at 7:30 a.m. She’s attentive, watching how I handle balance exercises (spoiler: not well). Some I can only hold for a few seconds before toppling.

Then comes the part I dread: the foot check. She removes my shoe and sock to inspect my AFO (carbon fiber brace that keeps my foot from slapping the ground). This is where I try not to think about the fact that I didn’t shower before leaving the house. Gross. But all is good, (I didn’t notice her having to turn her head for a quick breath) and we move on.

After 15 minutes of stretching and strength exercises, my legs are already shot—and it’s only 8:15 a.m. Cindy gives me a worried look because we have plans at 4:00 p.m. for Mark’s birthday. I give her a look back that says, It’s fine… probably.

PT wraps up with my usual homework assignment: exercises and stretches to keep me moving. They’re similar to what I should’ve been doing when I was running—except now, skipping them has higher stakes than just a slower race time. Compliance is the goal. Wheelchairs are not.

Occupational Therapy (OT): A Humbling Experience After a two-hour break in the cafeteria, we head to OT with Amanda, who I also know from the ALS clinic. She’s also young, friendly, and has an inviting smile. I’m lucky to have people who actually enjoy helping me.

She starts with a questionnaire about my daily activities, and this is where things get… uncomfortable.

At this point, I feel like a useless blob. Cindy jumps in to defend me, but the reality is—I’m not much help around the house anymore. It’s a hard pill to swallow.

We move on to strength and coordination tests. My hand grip scores aren’t great, but they aren’t terrible either. Then comes the peg test. I have to place nine pegs into a board and remove them—sounds simple, right? Wrong. I immediately start dropping them like they’re coated in grease. Amanda calls a mulligan and resets the timer. I try again, still dropping them, but I finish: 35 seconds left hand, 38 seconds right. Given that my thumbs don’t really work, I’ll take it as a win. (There are a couple videos of this experience.)

Amanda gives me my OT exercises—simple movements meant to keep my hands functional for as long as possible. I’m on board. Anything that buys me more time is worth the effort.

Post-Appointment Celebration: Car Snacks By 11:30, we’re done, and on the way home, I spot a Steak ‘n Shake. Obviously, we pull in for chocolate shakes and fries. Five miles down the road, the fries are gone. They might have lasted six miles, but I managed to drop several into unreachable crevices. At this point, I should probably be the one vacuuming the car.

Evening: Mark’s Birthday Dinner I get home at 1:00 p.m. and crash for a much-needed nap before we head out to Georgio’s for Mark’s birthday dinner at 4:00. Donna and Joe join us, and as usual, there’s plenty of laughter—especially about the ridiculous photos I posted earlier in the day.

After two and a half hours of beer, wine, pizza, and a free dessert (yes, please), it’s time to head home. My speech is a mess, and my legs are screaming for the couch. This is where I promptly fall asleep. I fortunately wake up at 8:30 pm and get upstairs and fall into bed. Yes, I did brush my teeth before passing out and a good night of sleep.

Today’s Plan: Do Nothing (Mostly) It was a long, busy week, but I felt good every day, and that’s worth celebrating. Today, I’m staying home while the workers who will be here at 8:00 a.m., install doors, trim, and plumbing fixtures, I hope. Other than answering their questions, I have no plans—and honestly, that sounds perfect. If all goes well, this house project should be wrapped up after next weekend. That’s almost as exciting as free dessert. Almost.

Have a great Saturday!

Love you guys!❤️