Saturday, March 15, 2025 – Day 214

Saturday, March 15, 2025

Good morning, everyone! Or, for those of you who I just learned read these posts late in the day—good night.

Yesterday’s dentist visit went better than expected. Back in the day, I wasn’t exactly a model flosser. My old hygienist never let me forget it, especially when my gums turned into a crime scene during cleanings. But when I started seeing Cindy’s dentist, Dr. Julie, I decided to step up my game—mostly. When you have a dentist you like…there is a voice in the back of your head that keeps you from skipping this important step. And wouldn’t you know it, my gums actually got healthy. It’s amazing what a little string and a good dentist can do for you.

Then along came ALS, and with it, the fine motor challenge of wrapping floss around my fingers. My mostly flossing diligence is not so good anymore and I was bracing myself for a return to the bleeding gums era, but surprisingly, everything still looked good and I passed the test. At least one part of my body hasn’t turned against me! Let’s see what happens six months from now.

Dr. Julie also got a kick out of my beard—her first time seeing me with one. She said I looked like Eric Clapton and even pulled out a CD to prove it. I wasn’t convinced, so we staged a little comparison: me versus Clapton. Same pose, different lighting, no fancy photography. Photos to follow—judge for yourselves.

Last night was the annual St. Patrick’s Day party hosted by a local lawyer, Tom. It used to be at the law firm, featuring a bagpiper who made his rounds, playing the same tune on a loop. Fun at first, but after a few hours, you started considering earplugs—or stuffing your ears with corned beef. Maybe Tom should hire Dr. Julie’s husband, he’s an accomplished bagpiper. Or not!

The last few years,,the party’s been held at Crystal Lake Brewery (CLB), and the bagpiper is…gone. Vanished. Suspiciously absent for three years now. I have a theory that my sister-in-law, Barb, may have had something to do with this disappearance, but I’ll leave that mystery unsolved. I think we’re all the better for it and my Apple watch doesn’t warn me of excessive decibel levels anymore. The brewery is a better setup—more space, and spilled beer doesn’t linger in the carpet for weeks smelling like those great kegger parties, we had so often, at 1922.

Big, noisy crowds are becoming harder for me to navigate. My voice doesn’t project well, and sometimes, people struggle to understand me. Last night went reasonably well, though. Either I was clear enough, or everyone just nodded along and pretended to get it. The only real trouble I had was when Joy, Tom’s wife, came up to me as we were leaving and started telling me how much she loved these morning blog posts. She said she liked the honesty of the writing and learning about ALS and feeling a part of my daily struggle. I tried to say thank you, but out came the emotions of that moment. They come hard and they come fast. I had a few tears streaming down my cheeks and same for Joy…my voice cracked…and now I couldn’t say anything. So the only thing I could do was to offer a hug and a tight embrace to say thank you. I gave her a second hug, because I still couldn’t speak and then it was time to wipe the tears 🥲 away and head to the car. Since I couldn’t say it last night…Thank you Tom and Joy for a great party and all the love and support. ❤️

Speaking of speech , I’ve been recording my voice and working on short phrases. It’s going… okay. I never liked the sound of my voice before, and I like it even less now. Then I read that the University of Illinois is recruiting people for a speech accessibility project—perfect, right? Except, in the fine print, it says Illinois residents aren’t eligible due to privacy laws. Seriously? I’d gladly sign a waiver! But I’m guessing the legal risks in this state are too much of a headache. Still, it’s frustrating to be locked out of something that could help me. Stupid politicians!!

Everybody have a great Saturday!

Love you guys!❤️