Good morning, and thanks for joining me on the road today. We had a busy oneâwell, busy for me anyway.
The outdoor pool closes at the end of the month, and just like last year, Cindyâs determined to squeeze in a few last visits before summer comes to a screeching halt. It almost doesnât make senseâsheâs not a sun goddess, rarely dips in the water (neither do I), and prefers peace and quiet.
Good morningâhere we are in August, and Iâm actually thinking about turning on the fireplace. On second thought⌠I am. No reason to sit here chilled when itâs 49° outside! In a few hours, of course, the A/C will kick on. No wonder the utility bills are so high.
Every four weeks we have our house cleaned by a Polish woman named Beata. Sheâs been coming here for years, and at this point sheâs more than just someone who cleansâsheâs a trusted friend.
Good morningâitâs celebration Monday!
Alex turns 30 today. Happy Birthday, bud! đ Back when I was working, the birthday rule was simple: the person celebrating brought the treatsâdonuts, bagels, whatever. A little backwards when you think about it, but it spared the office from decorating every other week. Maybe that was just the lazy way out. However your workplace rolls, may it be a good one today.
Yesterday we met Alex and Nicole at Cooperâs Hawk for Sunday brunch.
Good morning friendsâletâs have a chat about life.
On Thursday, Ellen, my palliative care PA, stopped by for my monthly health assessment. I like herâsheâs easy to talk to, knows her stuff, and never pressures us into decisions.
At the ALS clinic, we were asked if weâd completed a POLST formâPractitioner Order for Life-Sustaining Treatment.Weâve already done the Power of Health, but not that one. Ellen handed us the form, and I gave it a glance.
Good morning from the land of canes, coffee, and cushions.
The other nightâagainst the advice of every medical professional in my lifeâI ditched the breathing machine. Because? Mouth dryness so severe I feel like Iâm chewing on chalk.
Not a good decision. Live and learn⌠as I slept I mostly tossed and turned for four hours, then got rewarded with COâ buildup and a pounding headache. As much as I want to sleep without a breathing aide, ALS keeps reminding me whoâs in charge.
Good morningâtoday begins with gratitude, and it begins with you.
First, thank you to Peggy, my care coordinator and friend. She read the blog yesterday and noticed my need for a cushion for my bony backside and jumped on it right away. In a day or so, relief will arrive for my achy bony butt. I keep mentioning difficulties Iâm having and Peggy keeps finding solutions to them. Thank you!!
Good morningâsurvived another night of twisted sheets.
Every night, multiple times, I wake up to the sound of my Darth Vader breathing. Thatâs when I realize Iâm tangled in the hoses of the machine, mouth so dry it feels like Iâve been chewing on sandpaper. The supplier promised me a humidifier, but of course itâs back-ordered. The one they did have in stock was brokenâlucky me. So each night, as I crawl into bed, I ask myself: Do I really want to deal with this contraption again?
Good morning, fansâwelcome to a new day, a new start, and new opportunities.
Every morning I sit here wondering whatâs worth sharingâŚthis happens often. I want this blog to stay open, honest, and interesting. Some days, I donât feel like talking about ALS. But then I remind myselfâthatâs the reason I started writing in the first place: to bring family and friends into this journey. So then I type âgood morningâ and let things go from there.
Good morning! Following fall #13, Iâm upright, unbroken, and still typing.
Lace upâitâs almost race season The Chicago Marathon is October 12âjust 54 days away. A few family members are running, and when the legs start to feel like cement blocks, theyâll have a cheering section waiting for them along the course. Nothing says motivation like spotting your people in the crowd just when youâre questioning your ability and want to finish the race.
Good morning, Andyâs Army!â¨New week, new chancesâletâs see what it brings.
We closed out the birthday marathon last night with Barb and Mark, plus Kristen and Geoff, who made the trek from the city. Dinner was at The Assembly in Hoffman Estates, a place thatâs been around since 1978 and hasnât changed a lick since. Same booths, same wallpaper⌠pretty sure the server was original issue, too. The food hit the spot, but honestly, just sitting back with family after a string of celebrations was the real treat.
Good Morning, friendsâthanks for being here with me today.
Yesterday was day three of the birthday weekend, with todayâs lunch marking the finale. By tonight, my voice will be worn out after so many noisy gatherings. We have one more celebration to go.
Nicole and Zack flew in with Wyatt and Coco, and Alex and his fiancĂŠe Nicole joined us tooâhaving the whole family together made the weekend especially meaningful. We spent part of the afternoon catching up on Septemberâs wedding plans.
Good morning, Andyâs Army!
Yesterday was one for the books. It began with Cindy asking if I could make a quick trip to the drivewayâsomeone wanted to see me. I grabbed a cane and slowly shuffled out, not knowing what to expect. Rounding the cars, I blurted out a âholy sh*tâ (oops..:there were kids present!) as I came face-to-face with Harper and Lainey, flanked by Mike and Beth, standing proudly in front of a giant chalk mural shouting Happy Birthday.
Good morning â itâs Friday, which means itâs time to kick off a party weekend.
đ Happy Birthday to my brothers, Tim and Tom, who are turning 66 today! Canât wait to see you tonight for another âtriplet birthdayâ 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.
Good morning, fabulous friends and family!
Yesterday was quiet here, which worked out fineâmy caregiver was under the weather and spent most of the day in bed. Hopefully sheâs better today⌠we have social plans, and Cindyâs not about to let me go out alone. I suspect sheâs 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 yesterdayâs blog post.
Good morning, everybody.
The Anniversary Well⌠here I am. One year ago today, I heard those words that still ring in my ears: âI think you have ALS.â
The Diagnosis In my head, the thoughts came rapid-fire: What?! You think I have ALS?! That canât be right. Iâm healthy. Iâm active. This isnât happening. Why me? Youâve made a mistake! Crap. Seriously. How did this happen? Whatâs next? How do I tell the kids?
Good morning, all.
Iâm 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 senseâŚmobility challenges, unfamiliar surroundingsâŚbut then I go back to what Iâm learning in the book Iâm 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.
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. FortunatelyâŚit didnât last past the morning and I only had to deal with a poor night sleep.
Good morning, friends.
I woke up today with body aches, a headache, and a runny nose. Hopefully itâs just a 24-hour bugâŚdonât need or want this traveling to my lungs.
Yesterday, Cindy and I celebrated our 20th anniversary at Cooperâs Hawk. Itâs been months since it was just the two of us across a tableâno friends, no family, no grandkids climbing on usâjust us. The meal was wonderful, but the real gift was the time to sit back and talk about what weâve built together.
Good morning, everybody!â¨Itâs a special day, and Iâm keeping my focus right where it belongsâon today.
Happy Anniversary, Cindy!â¨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 Iâm still counting my blessings that you said âyesâ to the blind date⌠then âyesâ to âWill you marry me?â⌠and finally âI doâ to âDo you take Andrew?
Good morning, and thank you for joining us today. When I say âus,â I mean the collective group of friends and family who have walked alongside us on this ALS journey. Whether youâve been here from day one or this is your first time reading the blogâwe welcome you. I honestly hate to think about where weâd be without all of you. Thank you for hopping on board.
I keep looking at the number of days since my diagnosis (360), and itâs hard to believe itâs been nearly a year since I heard those numbing, frightening words from the neurologist: âI think you have ALS.