Friday, August 15, 2025 – Day 367

Good morning — it’s Friday, which means it’s time to kick off a party weekend. 🎉 Happy Birthday to my brothers, Tim and Tom, who are turning 66 today! Can’t wait to see you tonight for another “triplet birthday” celebration. Yesterday, I met up with my NIU college crew. We all live just far enough apart that getting together takes some effort… except for Kathy and Gary, who are practically down the street in Crystal Lake.

Continue reading →

Thursday, August 14, 2025 – Day 366

Good morning, fabulous friends and family! Yesterday was quiet here, which worked out fine—my caregiver was under the weather and spent most of the day in bed. Hopefully she’s better today… we have social plans, and Cindy’s not about to let me go out alone. I suspect she’s got visions of me trying to navigate sidewalks solo and ending up in a thorny shrub. Ouch! I was floored (figuratively) by the number of messages about yesterday’s blog post.

Continue reading →

Wednesday, August 13, 2025 – Day 365

Good morning, everybody. The Anniversary Well… here I am. One year ago today, I heard those words that still ring in my ears: “I think you have ALS.” The Diagnosis In my head, the thoughts came rapid-fire: What?! You think I have ALS?! That can’t be right. I’m healthy. I’m active. This isn’t happening. Why me? You’ve made a mistake! Crap. Seriously. How did this happen? What’s next? How do I tell the kids?

Continue reading →

Tuesday, August 12, 2025 – Day 364

Good morning, all. I’m still wrestling with the mixed feelings I have about committing to the late-November trip to St. Maarten. The thought of being confined to a wheelchair there worries me. On the surface, it makes sense…mobility challenges, unfamiliar surroundings…but then I go back to what I’m learning in the book I’m reading No Ordinary Time, the biography of FDR during World War II. The book describes how Franklin Roosevelt lived and thought after contracting polio at age 39 and losing the use of his legs.

Continue reading →

Monday, August 11, 2025 – Day 363

Good morning, fans, friends, and family! Welcome to Monday. Yesterday was a quiet day. Cindy spent much of it in bed fighting what she think might be a cold and doing her best to keep her distance from me. I thought I was coming down with something as well since I was having to manage a runny nose in the morning. Fortunately…it didn’t last past the morning and I only had to deal with a poor night sleep.

Continue reading →

Sunday, August 10, 2025 – Day 362

Good morning, friends. I woke up today with body aches, a headache, and a runny nose. Hopefully it’s just a 24-hour bug…don’t need or want this traveling to my lungs. Yesterday, Cindy and I celebrated our 20th anniversary at Cooper’s Hawk. It’s been months since it was just the two of us across a table—no friends, no family, no grandkids climbing on us—just us. The meal was wonderful, but the real gift was the time to sit back and talk about what we’ve built together.

Continue reading →

Saturday, August 9, 2025 – Day 361

Good morning, everybody!
It’s a special day, and I’m keeping my focus right where it belongs—on today. Happy Anniversary, Cindy!
Twenty years ago, it was just the two of us in Napa Valley, exchanging vows. These two decades have been nothing short of wonderful, and I’m still counting my blessings that you said “yes” to the blind date… then “yes” to “Will you marry me?”… and finally “I do” to “Do you take Andrew?

Continue reading →

Friday, August 8, 2025 – Day 360

Good morning, and thank you for joining us today. When I say “us,” I mean the collective group of friends and family who have walked alongside us on this ALS journey. Whether you’ve been here from day one or this is your first time reading the blog—we welcome you. I honestly hate to think about where we’d be without all of you. Thank you for hopping on board. I keep looking at the number of days since my diagnosis (360), and it’s hard to believe it’s been nearly a year since I heard those numbing, frightening words from the neurologist: “I think you have ALS.

Continue reading →

Thursday, August 7, 2025 – Day 359

Good morning to you all. Housekeeping item I’ve heard from people that have subscribed to the blog, that the notification emails when I post an entry don’t always get sent. This leads people to believe I haven’t posted anything for the day. I don’t know why his happens. Here is my suggestion. If by 8:00 am CST of each morning you haven’t received the email notification, please go to the blog and look for the post.

Continue reading →

Wednesday, August 6, 2025 – Day 358

Good morning, my fabulous family and friends. 🎉 Happy birthday, Joe Stefinsky! 🎂🎁 August is a month packed with celebrations—birthdays, anniversaries—and a few days that call for quiet reflection on life’s fragility. August 9 – Our 20th wedding anniversary! 🥳 Woohoo! August 10 – ER visit in Northern Wisconsin to check for stroke or brain cancer. Walking and talking were a problem. Preliminary diagnosis: Parkinson’s (I wish). August 13 – The shitty diagnosis.

Continue reading →

Tuesday, August 5, 2025 - Day 357

Good morning, amazing friends and family. A few weeks ago, I had the chance to do an interview with a young man named Dean, whose mother passed away from ALS. Dean is 19 and currently traveling across the country to meet others affected by this brutal disease—sharing their stories and raising money to help fight ALS. I was honored to be one of the people he chose to visit, and I truly enjoyed the short time we spent together.

Continue reading →

Monday, August 4, 2025 – Day 356

Good morning, it’s Monday. So, I’ve got this feeding tube now to help supplement my nutrition. Still, I enjoy eating real food when I can—and I hope to keep doing so for months to come, until swallowing becomes dangerous or simply no longer possible. But lately, something has changed with my chewing. Over the past week, every time I chew on the right side of my mouth, I end up biting my bottom lip.

Continue reading →

Sunday, August 3, 2025 – Day 355

Good morning everyone! We’re home from vacation. I hated to leave—especially knowing a few of my cousins (on the Irish side) are heading up to the lake on Tuesday. But we had other commitments already in place, and I have clinic on Thursday, so we wouldn’t have had much time together. Still… I’m bummed it didn’t work out. Sorry, Peter, Jean, and Anne. 😢 It’s strange—while I did a little walking up north, I didn’t do much else.

Continue reading →

Saturday, August 2, 2025 – Day 354

Good morning! Today we leave the tranquility, fresh air, and lazy days of summer in the Northwoods. It’s been a great week—and the last full day did not disappoint. Zack found an active fishing hole just a few hundred yards from the lake house, making it easy to take the boys out and teach them how to fish. It’s always funny to watch kids touch a fish for the first time.

Continue reading →

Friday, August 1, 2025 – Day 353

Good morning! It always sneaks up on you—one moment, you’re soaking in a great vacation… and the next, you realize it’s almost over. Today is our last full day on Fence Lake, so the plan is to cram a full week’s worth of fun into these final hours. The East Coast crew has a 9:45 a.m. flight out of Central Wisconsin tomorrow, which means a very early departure from the cabin.

Continue reading →

Thursday, July 31, 2025 – Day 352

Good morning—it’s the last day of July. The summer is flying by. Is that something we ever say about winter? Probably not… at least not me. Yesterday was a full one, thanks to our pirate-themed adventure. There was quite a bit of walking involved, paired with some well-spaced beverages—strictly for hydration, of course. 😄 We kicked things off with a pirate breakfast to get the kids into character and give them a chance to practice their “Arrrghs” with one eye closed.

Continue reading →

Wednesday, July 30, 2025 – Day 351

Good morning all. Sometimes we humans know we shouldn’t do something—because there’s a decent chance it could end badly—but we do it anyway. Case in point: Maria and Pete put in their pier this week. You thought this was about me…didn’t you? Anyway…putting in a pier requires multiple trips in and out of the lake, which stirs up the sandy bottom. And yes… you probably guessed it… they fell victim to swimmer’s itch.

Continue reading →

Tuesday, July 29, 2025 – Day 350

Good morning family, friends, and fans! Yesterday was a mixed bag—I logged fall #11. The good news? No injuries. Either I’m blessed with a layer of protective bubble wrap, or I’m just on a lucky streak. So far, the damage report includes only scrapes, bruises, and the occasional headache. It was another gorgeous day up here, and most of it was spent on the lake zipping around on the pontoon—towing paddle boards, water skiers, or just cruising with the kids.

Continue reading →

Monday, July 28, 2025 – Day 349

Good morning all! I’m comfortably settled into my new writing corner overlooking Fence Lake. It’s peaceful here—just me, a quiet view, and no one stepping over me or each other. The main house has enough space for everyone to spread out. The bungalow, on the other hand, is a little cozier Four adults and three young kiddos packed in with stray shoes, forgotten clothes, and toys littering the floor throughout. I have no idea what’s going on over there, and frankly, I think that’s for the best.

Continue reading →

Sunday, July 27, 2025 – Day 348

Good morning. Yesterday was a wonderful day. There’s just something about having the kids running in and out of the house, filling the air with joy (and the occasional chaos). Their energy is infectious—most of the time—and their curiosity cracks me up. I love their endless stream of questions and their tender instincts. Without even asking, they bring me my walking sticks like it’s part of their job description. I brought three canes on this trip so I’d always have one nearby, but honestly, with this crew, I could’ve just brought one.

Continue reading →