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.
Good morning, and welcome to Thursday.
Yesterday was a marathon of activity. We mightâve overbooked ourselves just a tad. With Bear needing two morning walks and Cindy flying solo on dog duty, it didnât take long for our morning to descend into chaos.
Breakfast was biscuits and gravyâone of my all-time favorites. And whoâs the cook? That would be Cindy, of course. Honestly, she handles nearly all the household responsibilities, and sheâs on a mission to keep my calories up and muscle loss down.
Good morningâand thank you. Thank you for making me smile this morning and lifting my spirit. I woke up to some photos dropped into my phone last nightâjust plain, simple fun. It was the kind of light I needed after yesterday.
On Monday, I received a tracking number from Team Gleason for the power wheelchair. It was scheduled to arrive on Wednesday, April 15. Perfect timing. Tax season would be behind me, the weatherâs finally turning nice for outdoor time, and weâre heading up to Minocqua on Thursday for Easter weekend.
Good morning. Welcome to my cozy cornerâpopulation: me, with a fire, phone, coffee, quilt, and an increasingly unreliable grip.
So, I get up this morning and someoneâs already made coffee. Itâs not Bearâheâs migrated from the foot of the bed to the head and claimed a pillow, strategically avoiding the one with drool on it. I pass Cindy on her way back to bed. I think I said good morning and thanked her for the coffee.
Monday, April 14, 2025 â Day 244â¨Good morning, and welcome to a new week. Sorryâmore golf talk. Iâve been watching The Masters about as long as Iâve been a Cubs fan, starting just before the infamous 1969 collapse.
Yesterday was a classic couch-potato dayâone for the books. I settled in at 11:00 a.m. for The Masters and didnât move much until the sun was dipping low in the afternoon sky.
Good morning!
Itâs the final day of The Mastersâand if youâre even mildly into golf, this is about as good as it gets. Itâs one of the few sporting events thatâs actually good on TV and in personâŚI donât have words to describe the feeling. Being there live definitely cranks the experience up a notchâreally tenfold. The practice rounds feel special. But standing in the gallery during tournament play? Thatâs bucket-list stuff.
Good morning, itâs going to be a sunny day. âď¸
â¨Letâs hope thatâs a sign of good things to come, because Iâm still waiting on that wheelchair. No shipping notice. Nothing. I worry that the supply chain stuck is in some kind of tariff tug-of-war? If I donât see something by Monday, itâs follow-up time.
Speaking of follow-up, I had my pulmonologist appointment on April 1st to address my completely useless excuse for a cough. Yesterday, I checked the patient portal expecting to see an order for a cough-assist device. Nope. Nada. Zilch. So I sent the doc a polite message, asking if I missed a stepâreally I was just nudging things along without poking the bear too hard. I know theyâre short-handed and stretched thin. It took six weeks just to get that appointment. Iâm the one that needs the help so best to be nice.
A couple of hours later, a text pops up saying my doctor ordered âtesting supplies.â Not exactly what I was hoping for, but I guess the nudge worked. Better late than never. Still, I shouldâve followed up soonerâthis choking issue is no joke. One of these days, I might not be able to clear my airway, and thatâs a serious YIKES.
Now Iâm waiting on more shipping notices, and of course, everything will probably land Thursdayâthe day we head up to Minocqua for Easter. Timing, as always, impeccable.
Update on the bathroom remodel. Technically itâs finishedâŚexcept for the part where it actually works. The no-barrier shower is a dream to get into, but itâs just as easy for the water to escape. We figured it might be an issue, but the original recommendation was to skip installing glass. We may need to rethink that. Iâm now researching stick-on shower dams. I think theyâre all made in China. WhoopsâŚshould have acted sooner!
I didnât plan on becoming a damâor damnâengineer, but here we are. Until then, Iâm back in the old shower, wrestling with a shower chair that weighs about 50 pounds and resists movement like a two 25 pound dumbbells. A much heavier load than the one pound dumbbells Iâm working out with.
Physically, each day I feel a little weaker. On Thursday at Sew Hopâd, I picked up the 20 oz. mug and my hand trembled just trying to raise it for a sip. Iâm officially at the point where Mark carries my beer back from the bar. Itâs either that or risk spilling it and triggering a âcleanup on aisle 5.â
Cindy continues to be amazing. Sheâs been hustling to keep my protein intake at 60â70 grams a dayâeggs, peanut butter, high-protein wafflesâwhatever Iâll eat, sheâs on it. Sheâs even started cutting my food for me, something we both knew would come eventually. Iâm lucky sheâs willing to roll with the changes, even when the load keeps getting heavier.
That said, Iâm officially down to 166 pounds. Thatâs a 25-pound drop since last June when the ALS symptoms started showing up. The weird part? I look like Iâm gaining weight, just not in the places I want. My body is losing muscle but hoarding belly fat like a squirrel in winter. Pear-shaped and weakâwhat a combo. Maybe itâs time to pivot from high-protein to high-calorie. Bring on the Big Macs. Donna, is the elf behind the Girl Scout dos-e-doe cookie deliveriesâI see you, and thank you. Where are you hiding the stash?
Yesterday, post-shower and feeling lighter (in all the wrong ways), I tried to put on a pair of jeans. The button refused to cooperateâeven with the assistive tool. Cindy watched me struggle and offered to help. Naturally, I declined, becauseâŚpride and stubbornness. After several failed attempts and what mightâve qualified as an ab workout, I surrendered. Cindy stepped in, laughed, and tried herselfâequally difficult for her. Eventually, with sheer determination and a bit of comedy, she got the button fastened. Then laughed again because she knew unbuttoning later would be its own episode. Spoiler: it was. Ten minutes of round two later, I was finally free.
All this led me to remember the magnet-button shirts Zack ordered for me. Today feels like a good day to try them out. Worst case, I pop a magnet instead of a button. Thanks, Zackâyouâre ahead of the curve.
Once I was fully dressedâafter a half-hour performance that would have made for a good skit on The Tonight Show (when Johnny Carson was the host), Mark picked me up and we headed to Mike and Bethâs home for cigars and drinks in their garage. It was the first time in 20 years Iâve seen Mark light up a cigar and sip whiskey. It was a great timeâso good, in fact, that Cindy had to text Mark to remind me I was past curfew. She wasnât wrong.
But before we left, I asked Mike if I could borrow one of his ironsâgolf club, not wrinkle-removerâto see if I could still swing. I had visions of a triumphant moment. The reality? Wobble, wobble, abort mission. Balance was not in my favor. As Mike helped me back to the car, I glanced down at the lawn and realized the problem. I was standing on a downhill lie. Yep. Thatâs my story, and Iâm sticking to it. There will be other opportunitiesâŚI hope.
Good morning, happy Friday, and welcome to the weekend.
The final day of tax season came and went without much fanfare. No balloons. No heartfelt speeches. Not even a half-hearted âsee you next year.â Just a normal day at the site â and then we packed up and left. I walked out of the bank like I was headed to grab groceries, not closing out years of volunteering. I thought Iâd feel something more, but⌠nope.
Good morning, yâall!
Iâve never quite gotten used to saying âyâall,â but Iâm still giving it a shot. A couple of years ago, Zack gave me a baseball cap with âyâallâ embroidered on the frontâhis way of helping me get comfortable with it. The hatâs definitely comfy. The phrase? Still a work in progress.
Itâs hard to believe itâs been nearly eight months since I was diagnosed with ALS on August 13, 2024.
Good morning, all!
I canât tell if Mother Nature is giving me the cold shoulder or just having a laugh at my expense. Snow? In April? Really? This is prime fireplace weatherâquilt wrapped tightly around me, keeping my bare legs warm. Iâve come to love this morning ritual: sitting beside the fire, wrapped like a cinnamon roll in a quilt. I feel like a caterpillar waiting for the metamorphosis that will bring out the butterfly.
Good morning⌠and it really is a good one.
Every morning at 5:00 a.m., I open my Notes app, type in the day, date, and how many days itâs been since the âshittyâ diagnosis, and I thinkâwhat could I possibly write that I havenât already said? And yet, each morning, once I start typing, something always comes to me.
The biggest reason I still have something to say is because of the incredible friends and family who are hurting with us, walking this path alongside us.
