Monday, May 12, 2025
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.
Sunday, May 11, 2025
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.
Saturday, May 10, 2025
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.
Friday, May 9, 2025
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.
Thursday, May 8, 2025
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.
Wednesday, May 7, 2025
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.
Tuesday, May 6, 2025
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.
Monday, May 5, 2025
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.
Sunday, May 4, 2025
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.
Saturday, May 3, 2025
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
Friday, May 2, 2025 - Day 262 Good morning, friends and family. Our neighbor Fred called us yesterday afternoon⌠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.
Thursday, May 1, 2025
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.
Wednesday, April 30, 2025
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.
Tuesday, April 29, 2025
Good morning, friends and family! 𤊠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!
Monday, April 28, 2025
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.
Sunday, April 27, 2025
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.
Saturday, April 26, 2025
Good Morning! Thank you so much for all the comments from yesterdayâs post. There were so many beautiful and supportive repliesâyou made me tear up. Truly, thank you. And the video of the Bearâs Super Bowl ShuffleâŚclassic! I should have thought to shareâŚprobably the best music-videos of all time. This past Thursday, a respiratory therapist came to the house to drop off a “cough assist” machineâŚsomething that has been long overdue.
Friday, April 25, 2025
Good morning! For those of you reading these posts, I believe manyâif not mostâare Chicago Bears fans. Iâve loved watching the Bears for decades, even if loving them didnât always mean liking them. With the McCaskey family at the helm, weâve had more than our fair share of disappointment. For me, the 1970s were especially rough. There was only one bright spot in that era: Walter Payton, drafted in 1975. The Bears were still a losing team, but Payton made them worth watching.
Thursday, April 24, 2025
Good morning! It promises to be a beautiful dayâlow 70s, sunshine, and a âbracelet brigadeâ arriving to string beads. Look what you started, Nicole A.! So many people want to join âAndyâs Army.â Life doesnât get much simpler than this: threading beads and forging a tangible bond between us all. Every bead feels spiritualâeach one recalling memories from over fifty years ago, or fresh ones from just this past week. I thank you the only way I know how: a smile, a hug, a quivering lip, a few tears, andâyesâsometimes being absolutely speechless.
Thursday, April 24, 2025 â Day 254
Good morning! It promises to be a beautiful dayâlow 70s, sunshine, and a âbracelet brigadeâ arriving to string beads.
Look what you started, Nicole A.! So many people want to join âAndyâs Army.â Life doesnât get much simpler than this: threading beads and forging a tangible bond between us all. Every bead feels spiritualâeach one recalling memories from over fifty years ago, or fresh ones from just this past week. I thank you the only way I know how: a smile, a hug, a quivering lip, a few tears, andâyesâsometimes being absolutely speechless. After all, Iâm Sallyâs sonâand Iâve inherited more of the Irish side than the Polish.
Iâve always cherished my PolishâIrish heritageâtwo cultures built on hard work and perseverance. I wish Iâd learned Polish, but with only one person in the house fluent (and always working), it wasnât meant to be. Then again, after my highâschool Spanish experience, Iâm not convinced Iâm cut out for mastering more than one language.
Some days, Iâm a little pissed about the hand I drew in lifeâs genetic lottery. âWhy me?â I ask. Of course, thereâs no answerâand Iâm far from the only one nursing a pity party. So many folks are dealt tough hands.
That thought reminds me of John Prineâs song âDear Abby,â which captures it perfectly, here is an excerpt:
(Verse 1)â¨Dear Abby, dear Abbyâ¨My feet are too longâ¨My hairâs falling out and my rights are all wrongâ¨My friends they all tell me that Iâve no friends at allâ¨Wonât you write me a letter, wonât you give me a call?â¨Signed bewildered
(Chorus)â¨Bewildered, bewilderedâ¨You have no complaintâ¨You are what you are and you ainât what you ainâtâ¨So listen up buster, and listen up goodâ¨Stop wishing for bad luck and knocking on wood
Yesterday, I got the results of last weekâs overnight pulseâoximetry testâthe one where a clip on my fingertip records your bloodâoxygen levels all night. I dreamed I was stuck in a hospital, with Nurse Ratched popping in each hour to rouse me for vitals. Hospitals are the ultimate oxymoron: they steal your sleep in the name of healing, even though sleep is precisely what helps your body repair itself.
Back to the test: my Oâ saturation hovered between 90â95% most of the night, except for a thirtyâminute wobble when it dipped into the high 70sâfelt like someone pressed a pillow to my faceâbefore snapping back to normal. Maybe I was actually dreaming about âOne Flew Over the Cuckooâs Nestâ during the night. The good news, the doctor isnât worried, so Iâm calling it a âpass.â
That said, Iâve noticed myself getting windedâclimbing stairs or even walking to the mailbox yesterday (left the power wheelchair in the carâwhoops!). Adjusting to this new device is still a work in progress.
My lungâfunction tests have been the one bright spot since my ALS diagnosis, so I admit Iâm anxious this may be changing⌠slowly, but noticeably. My next ALS clinic appointment is May 1âand frankly, that one scares me. My ALSFRSâR score was 43 in October; I know itâs dropped since then, and Iâm bracing myself to hear the official number.
On a brighter note, my coughâassist device arrives today, along with a respiratory therapist. I donât yet know exactly how it works or how it will help, so Iâll dive into the details in a future post. If it helps with the chokingâŚthis will also be a win.
Have a wonderful dayâletâs make some bracelets!
Love you guys! â¤ď¸
Photos from my swallow study. Couldnât take any during the test due to the radiation.
