Good morning! Welcome to Wednesday.
I heard a description yesterday of how New York City smells, and it cracked me up: “Horse poop and then trash and then subway vents and pee and oddly, cinnamon gum.” 🤣😂😱 The kind of sensory experience you never forget—and never ask for.
On a much more enjoyable note, the photos from Saturday’s open house at Illinois Beach State Park are ready! 👉 Open House Photos You’ll need to enter your email to access the gallery.
Good morning, everybody!
We’re slowly—very slowly—getting life back in order after the whirlwind of the weekend. Although when I say we, I realize I’m being generous. Let’s be honest: I didn’t unload the car on Sunday. I’m not the one cooking meals, tidying up the chaos, or folding the laundry that somehow multiplied like rabbits while we were gone. I mostly hobble in, locate a chair, take a nap, or get in the way.
Good morning!
I’m back in my writing spot at home. After one of the best weekends of my life, I can honestly say—it feels good to be home, recharging right alongside my wheelchair.
When Tim first asked if I’d be okay with him throwing a small party to celebrate me, I was hesitant. I didn’t know if I’d still have my voice, my legs, or the stamina to hold up through 4–5 hours of nonstop conversation.
Good morning from Illinois Beach State Park.
First off — a public service announcement: the ticket lottery for The Masters opened this morning! You have until June 20, 2025, to submit your application. Mine is in. It doesn’t cost anything… at least not this part.
www.masters.com/en_US/tic…
Now on to the good stuff.
I’m sitting here this morning with so many memories chaotically running through my head. As I replay individual moments, I start to weep — with happiness.
Good morning. It’s a beautiful sunrise over Lake Michigan this morning.
We’re at Illinois Beach State Park for an open house later today. I haven’t been here in about 40 years, and it’s strange—but also kind of great—to be back. The state has made a lot of changes, starting with the entrance. What used to be a straight shot into the park is now a long, curving road to the lake.
Good morning — we’ve made it to Friday!
Today’s topic… loose lips. Yes, literally and figuratively.
As you know, ALS comes with a parade of symptoms, each one waiting its turn to mess with your daily routine. I’ve shared most of them with you along this wild ride, and today, we’re adding more to the scrapbook.
Each morning starts the same: fire up the coffee maker, take my pills (do they work?
Good morning everybody!!
I know sleep issues aren’t exactly headline news, but they are front and center again.
Around 2:00 a.m. last night, my cabbage brain decides it’s time to get to work. That’s when it starts sorting through every open tab in my head—worries, memories, to-do lists. It plays out like a pinball game, bouncing from one thought to the next until the machine finally hits tilt. At that point, sleep is done for the night, and all I can do is lie there in the dark and wait for the new day to begin…and it has.
Good morning!
I have no idea who reads this blog or how many people tune in each day—and that’s by design. I never wanted to chase view counts. I just wanted a place to share this journey—our ALS journey—with family, friends, and curious onlookers who might be walking their own path or simply want to understand ours a little better.
Going back to May 20, when we appeared on Season’s Sunflower Hour—me, Cindy, Nicole, and Alex.
Good morning everybody, and welcome to a new week.
Yesterday was a laid-back day—for me, anyway. We went to the Memorial Day parade in the morning. The parade kicked off at 11:00, and we left the house at 10:00 to make sure we had easy, convenient parking. We brought the power wheelchair to make things easier on the mobility front.
As it turned out, parking was easy—we were the first ones there.
Good morning.
Happy Memorial Day!
Don’t forget the veterans who gave everything to protect our freedoms. If you’ve got a moment today, take it to honor them. We’ll be heading to the parade in Crystal Lake—it’s become a meaningful part of the day for us.
Yesterday was one of those golden family days. We celebrated Alex and Nicole with the perfect family only couple’s shower, hosted by Kim and Aras. Cindy and I were right there in the mix.
Good morning!
I want to circle back to Season’s Sunflower Hour from Tuesday. A big thank you to Nicole (Nikki) and Alex for making the trip to Crystal Lake to be part of the show. You both could’ve joined remotely and skipped the hassle of traveling—but you didn’t. You immediately said, “We’ll be there,” and reshuffled your work and travel schedules to sit beside us. Well… almost beside us—we had to be in separate rooms during the broadcast!
Good morning sibs, kiddos, grandkiddos, friends, and curious minds—
Our home continues to evolve. We could probably use a storage unit just to house all the adaptive gear that keeps showing up. Although let’s be honest—if it were offsite, we’d never actually go get the stuff when we need it so we’ll just put household stuff in storage to make room.
Yesterday’s new arrival: a stairlift. Going up and down the stairs several times a day has become a real challenge, and my PT strongly suggested I cut back on the stair hikes.
Good morning, and happy Friday.
Tuesday night’s Season’s Sunflower Hour has already racked up over 400 views—an incredible number of people taking the time to listen to our ALS journey. I’m still blown away that we were chosen for this. It was a fun and meaningful show, even if it left me a little emotionally drained. Thank you to everyone who tuned in—it means more than you know.
If you missed it, here’s the link: www.
Good morning!
My day starts the same way it has for years: come downstairs, brew the first cup of coffee, and take my pills while it’s perking. Simple routine, right? Not so much these days. Lately, dropping pills has become part of the ritual. And let me tell you, once a pill hits the floor, it bounces like my shots on a pool table. You never know where it’ll land.
Good morning—and thank you, everyone for last night.
My phone blew up with messages yesterday. Over 70 text messages poured in, and I saved them all to read this morning. Fifteen seconds in, the emotions hit. Hard. It may take me a while to get through the texts and respond, but please know: your words, your support—they mean the world to us.
If you missed last night’s Season’s Sunflower Hour featuring our family, you can still watch it here (and yes, it’ll live forever on YouTube—just like a bad haircut): Watch the replay
📣 LIVE EVENT ANNOUNCEMENT 🌻 Season’s Sunflower Hour — Special ALS Episode. TODAY!!! We’ve got something real to share.
🗓 Tuesday, May 20th - that’s today 🕖 7:00 PM CST 📍 LIVE on YouTube Join me and the family for a candid conversation about life with ALS — or as we’ve come to call it, that shitty disease.
We’ll talk about the hard stuff, the funny moments, and even those questions people haven’t had the nerve to ask out loud.
📣 LIVE EVENT ANNOUNCEMENT 🌻 Season’s Sunflower Hour — Special ALS Episode. TODAY!!! We’ve got something real to share.
🗓 Tuesday, May 20th - that’s today 🕖 7:00 PM CST 📍 LIVE on YouTube Join me and the family for a candid conversation about life with ALS — or as we’ve come to call it, that shitty disease.
We’ll talk about the hard stuff, the funny moments, and even those questions people haven’t had the nerve to ask out loud.
📣 LIVE EVENT ANNOUNCEMENT 🌻 Season’s Sunflower Hour — Special ALS Episode. In just 1 day, we’ve got something real to share. 🗓 Tuesday, May 20th 🕖 7:00 PM CST 📍 LIVE on YouTube Join me and the family for a candid conversation about life with ALS — or as we’ve come to call it, that shitty disease.
We’ll talk about the hard stuff, the funny moments, and even those questions people haven’t had the nerve to ask out loud.
📣 LIVE EVENT ANNOUNCEMENT 🌻 Season’s Sunflower Hour — Special ALS Episode.
In just 2 days, we’ve got something real to share. 🗓 Tuesday, May 20th 🕖 7:00 PM CST 📍 LIVE on YouTube
Join me and the family for a candid conversation about life with ALS — or as we’ve come to call it, that shitty disease.We’ll talk about the hard stuff, the funny moments, and even those questions people haven’t had the nerve to ask out loud.
Good Morning, everyone!
📣 LIVE EVENT ANNOUNCEMENT 🌻 Season’s Sunflower Hour — Special ALS Episode.
In just 3 days, we’ve got something real to share. 🗓 Tuesday, May 20th 🕖 7:00 PM CST 📍 LIVE on YouTube
Join me and the family for a candid conversation about life with ALS — or as we’ve come to call it, that shitty disease.We’ll talk about the hard stuff, the funny moments, and even those questions people haven’t had the nerve to ask out loud.