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.
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.
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.
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.
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.
Hello world!
Yesterday was another trip east for a medical appointmentâthis time to Highland Park Hospital for a swallow study to check how well my swallowing muscles are workingâŚwhich they sometimes do notâŚor at least not well.
The test was done in the radiology department, and it involved drinking barium in a variety of thicknesses while being recorded by a fluoroscopyâbasically an x-ray movie of my throat in action. It was pretty fascinating to watch on the screen.
Good Morning!
Weâre back home after spending Easter weekend up north. We were sent off with a wet, snowy goodbyeâaccumulating snow and all. The last time we had a send-off like that was in March of 2020. We had left Illinois to escape the COVID lockdowns and, no sooner had we arrived in Fence Lake, Wisconsin shut down its economy. Great! We had just left spring behind in Illinois, only to return to winter⌠with temps near 0°.
Good morning, all. âď¸
Our holiday weekend wraps up todayâalong with everyone elseâs, sadly. I donât want to leave. Iâm going to miss the last of the ice leave the lake this week.
The world always feels different up here in the Northwoods. Slower. Calmer. Saner. Itâs like stepping out of the rush of regular life and into a more grounded version of living.
When I think back to the beginning of our relationship with Minocqua, not much has changed.
Good morning, and Happy Easter.đŁ
Yesterday passed without incidentâjust a lingering dull headache from my fall on Friday. Itâs a bit of a blow, honestly. That stumble, right as I was trying to reach the boathouse and just stare west over the frozen lake. Iâm afraid that attempt might have marked the last time I could make my own way down to the waterâs edge. Late July will present one more opportunityâŚall I can do is try.
Good morning, yâall!
Friday was an inside day at the cabin. This time of year, the weather in this part of Wisconsin isnât exactly inviting. Winter is overâso long snowmobiling, ice fishing, and skiingâand summerâs still hiding until May. March and April are like nature’s awkward teenage years: nothing fits, and nobody knows what to do.
But Wisconsinites, bless âem, have figured it out: go to the bar! Naturally, Wisconsin has the most bars per capita in the country.
Good morning, from frozen Fence Lake!
Every time I travel to northern Wisconsin, Iâm struck by how the weather seems to be running on its own schedule. Just over 300 miles from Crystal Lakeâwhere spring has taken the wheel, tulips are poking through the soil, and landscapers are fluffing up flower beds for EasterâFence Lake is still hanging onto winter like itâs got unfinished business. When Lis invited us up for Easter weekend, I held out hope for a little spring sunshine.
