Good Morning, itâs FRIDAY!!!
đŁ LIVE EVENT ANNOUNCEMENT đť Seasonâs Sunflower Hour â Special ALS Episode.
In just 4 days, weâve got something real to share. đ Tuesday, May 20thâ¨đ 7:00 PM CSTâ¨đ LIVE on YouTube
Join me and the family for a candid conversation about life with ALS â or as weâve come to call it, that shitty disease.Weâll talk about the hard stuff, the funny moments, and even those questions people havenât had the nerve to ask out loud.
Good morning friends, family, and curious onlookers
đŁ LIVE EVENT ANNOUNCEMENT đť Seasonâs Sunflower Hour â Special ALS Episode
In just five days, weâve got something real to share.
đ Tuesday, May 20thâ¨đ 7:00 PM CSTâ¨đ LIVE on YouTube
Join me and the family for a candid conversation about life with ALS â or as weâve come to call it, that shitty disease.Weâll talk about the hard stuff, the funny moments, and even those questions people havenât had the nerve to ask out loud.
Good morning, good evening, or good nightâdepending on when and where youâre tuning in from.
Yesterday brought another round of golf with Tim and Bill B.âand honestly, it felt like a small win just getting out there again. As ALS keeps nudging its way into everything I do, I find myself more grateful than ever for days like this. Golf, even when it’s more chaos than control, still feels like freedom.
The swing has become a whole new beast. Iâve had to adjust just about everythingâstance, grip, swing length, balance. Itâs like trying to relearn something my body used to know instinctively (almost), but now it speaks a different language. Then we had to add a new element to the game: someone always ready to catch me if I tip over. One behind and one opposite. I imagine the folks in other groups watching from a distance, wondering, âWhatâs with the secret service agents?â
Still, these last two weeks have gone surprisingly well. I played 18 holes (spread out over two weeks, not one day!) and stayed on my feet the entire time. Thatâs a big win. I even saw some improvementâone swing had real lift and probably carried about 100 yards. The guys were so focused on the flight of the ball that they missed my little backward wobble. I caught myself before falling, watched the ball settle, and we broke into high fives. Honestly, I think we were more excited that I stayed upright than the shot itself.
Tim and Bill deserve a big thanksânot just for the company, but for all the behind-the-scenes help: driving me up to the green, grabbing clubs, teeing the ball, and pretending not to notice that I havenât made a single ball mark to repair yet. Maybe next week?
Trying to maintain some semblance of normalcy and freedom isnât easyâbut with help from friends, family, and Cindy, I still get to show up for life. Sure, Iâm slower and shakier, but Iâm lucky. Lucky for the support, the watchful eyes, and the choreography that goes into catching me if I start to go down. Thanks for bringing this kind of closeness to my lifeâphysically and emotionally. It means more than I can say.
On Monday, Mike H. picked me up in his â68 convertible Mustang for a ride around the neighborhood before heading over to the Balasi house. It was a perfect day to be cruising around in this red classic pony âwindows down, engine humming, and plenty of smiles and thumbs-up from everyone we passed.
Then it was just the guys, heading to the Balasiâs, hanging out under the back patio pergola. A couple of drinks (yes, only two), a good cigar, and some well-earned relaxation. Itâs starting to feel like a new ritualâone thatâs easygoing, familiar, and fun, as long as we keep things in moderation. And we did. Itâs amazing what maturity does to keep things safeâŚor safer than when we were 25.
When it came time to leave, I had the choice: a smooth exit in Markâs SUV or one more joyride in the Mustang. Of course, I chose the Mustangâeven though I knew full well Iâd need some serious leverage from Mike to get out of the car. Hopefully, he didnât throw out his back doing it.
Thanks, Mike and Markâit was another fun afternoon. Already looking forward to the next one.
Today will bring more good thingsâI donât know what theyâll all be, but Iâm excited to find out and to keep sharing this journey with you. Thanks for being part of it.
Good morning everybody!
More ALS adaptive gear is rolling into the house to keep me moving from A to B. Everything is large, heavy-duty, and takes up space. For every new device, a piece of furniture gets the boot. At this rate, we may need a storage shedâor start listing chairs on Craigslist to make room or empty a room.
Yesterday, ALS United delivered the Liftkarâsoon to be dubbed the âstair sherpa.
Good morning from the heartland. âď¸
My apologies to all the moms out thereâI totally missed Motherâs Day yesterday. So, a heartfelt Happy Belated Motherâs Day! I hope your day was filled with love, laughter, and at least one meal you didnât have to cook.
Things around here continue to be fluid. Every day has a slightly different rhythm, like lifeâs running on shuffle mode.
Yesterdayâs main event was smoking the pork belly.
Good morning, friends, family, and curious onlookers.
Itâs a strange season in the neighborhood. Within the span of a single year, our tight little community of eight townhomes has shifted more than it had in the previous two decades. Iâve always believed in knowing your neighborsânot just enough for a polite nod, but well enough to lend a tool, share a story, or show up when something breaks. For over 20 years, this has been a place full of life and connection.
Good morning readers, welcome to the weekend.
I want to say thank you for the responses and comments Iâve received on various blog posts. Your messages are inspiring, compassionate, and emotional. Theyâve stopped me in my tracks, made me reflect, and even let a tear or two fall. I love that youâre walking this road with me. And your confessionsâthat you enjoy my writings, my musings, my groggy brain dumpsâhumble me more than I can say.
Good morning, one and all.
The City of Crystal Lake is keeping its promise.
Our small subdivision, of eight townhomes, connects to Huntley Road, a major arterial with no crosswalk and a rise in the pavement that limits visibility. You get less than five seconds to dash across before a car comes flying over the hill. Thatâs if theyâre observing the 35 mph speed limit (cue sarcastic laugh). Realistically, everyoneâs going at least 5â10 mph over.
Good morning! đ
Some mornings, I wake up feeling like the same guy Iâve always beenâcoffee sounds good, sunshine looks nice, letâs see what the day brings. And then I rollover, plant my feet on the floor and go to stand. Sorry⌠back to reality. Each morning Iâm reminded of where I am with ALS and the new challenges arising. Breathing wants a front row seat.
When I was diagnosed last August, my breathing numbers were surprisingly solid.
Good morning, friends, family, and others following along.
Go ahead and circle Monday, May 20 at 7:00 p.m. CST on your calendar. Our family will be featured in a one-hour livestream called Seasonâs Sunflower Hour, where weâll talk about how ALS has affected usâand what weâve done to keep moving forward through the ongoing challenges. I wish every one of you could be directly included in the show, because youâve all been walking this path alongside us.
Good morning, my friends and family.
You wonât believe thisâwell, maybe you will, but I still donât. I had just finished Shadow Prey, updated the blog with this info, and was thinking I had a couple days to wander off into other books.
Somebodyâwhoever you are, reveal yourself!âhad other plans. A courier shows up, Bear goes bonkers barking (seriously, why do dogs treat every delivery like a federal raid?), and a package lands on the porch.
Good morning! Another Monday, another week for to get up and do what I canâŚthatâs the plan.
Lately, thereâs been a steady stream of Prey novels by John Sandford showing up at the houseâAmazon deliveries, no note, just one book after another. There are 35 in the series. I just finished book #2, Shadow Prey over the weekend. I donât know who sent them or why, and nothing in the writing so far gives me a clue.
Yesterday, I gave ALS the fingerâliterally and symbolicallyâby posting a photo of the license plate âF ALS.â It was raw, cathartic, and hit a nerve with a lot of people. The reaction was overwhelming. Weâre all in agreement: this disease deserves every ounce of contempt we can muster.
But sometime later in the day, the anger gave way to a different need. I started thinking about what I really want to be known forâI donât want to be defined by ALS, I want to stand for love, joy, encouragement, stubborn optimismâanything but ALS.
Good morning!
Itâs been a busy week, and I need a couple of days off. My legs were pretty wobbly last night and havenât improved much overnight, so a quiet day at home sounds like just what I need.
Thursday was ALS clinic dayâa long one at Glenbrook Hospital, where I spent most of the day meeting with various specialists to assess my ALS progression. These clinic visits happen every three months.
Friday, May 2, 2025 - Day 262 Good morning, friends and family.
Our neighbor Fred called us yesterday afternoonâŚ
He and his wife Anna moved in about four years ago, and over that time, theyâve become more than neighbors â theyâve become close friends, the kind you feel lucky to find just down the block.
Fred is 79, and Anna is younger â though if you ever asked her how much younger, sheâd just raise an eyebrow and pour more wine.
Good morning, and welcome to May.
Back in October, at Sally and Meghanâs wedding in Milwaukee, most of the Snarski tribe gathered to celebrate. It was the first time my nieces and nephews were introduced to my ALS diagnosis. Letâs just say, the celebration didnât miss a beat. The weekend was outstandingâwe danced late into the night. If I remember correctly, it was close to 10:00 p.m. when Cindy and I finally had to call it.
Good morning!
Rolling out of another month, and Iâm hoping weâre finally sliding into the kind of summer-like weather that might just stick around until October.
I have mixed feelings about saying goodbye to winterâand especially to my cozy morning corner by the fireplace. There’s something about staying indoors that puts fewer demands on my body than summer does. The warmth and brightness of the coming months bring their own kind of beauty, sureâbut also a few more physical challenges.
Good morning, friends and family! đ¤Š
Each morning I get up and look forward to the start of a new day. Lately, I find myself wondering what thoughts will spill out of my head. What do people want to know? How much ALS discussion is too much? Am I repeating myself? Is my ordinary life really interesting enough for a blog? When did I become a decent writer? Then I write âGood morning!
Got a FaceTime call from Nicole yesterday morning. I was expecting a quiet Sunday catch-up with Wyatt and Coco, but instead, there was Nicole in a half-marathon race. She was nearing the end, in the last mile, smiling and a little winded, but looking strong. She somehow kept the phone locked on her face while she talked and ran. (How do you even do that?)
You could hear the cheering, cowbells, and the wind in the background.
Good morning, yâall!
This past Thursday, some of my Waukegan High School classmatesâChrissy, Carrie, and Cathy (the Three Câs)âcame out to spend the day making Andyâs Army bracelets. It was a long trek for them; they all live in Lake County, near the lake.
Like me 20+ years ago, this group doesnât travel west very often. Wauconda is far enough… no need to venture out to Crystal Lakeâthe edge of civilization.
