Monday, September 1, 2025
Good morning, Happy Labor Day! Spiders and snakes. Those are two things that give me the creeps. Which still surprises me, because as a kid I wasnât fazed by either. We used to collect garter snakes by the dozens and keep them in a Styrofoam cooler in the basement. I donât think we ever had a plan for themâthey were just our âpets,â hidden from everyone else in the house.
Sunday, August 31, 2025
Good morning, friends and family. Coming up this Wednesday is the ALS United Classic, a golf tournament to raise awareness and money for ALS. I was invited to play, but the idea of playing golf scared me so I didnât commit immediately. These days, swinging a golf club feels a little like entering a dance competition and told not to step on my partnerâs toes. My balance is highly questionable, and staying upright is not guaranteed.
Saturday, August 30, 2025
Good morning, and welcome to the last days of August. With Labor Day upon us, those winter thoughts start creeping in. Sorry. Iâve missed a whole string of birthdays my high school friends celebrated this month. Happy Birthday to Carrie, Chrissy, Paul, Tom, and Pamâall in the last week. I hope you were surrounded by laughter, love, and a cache of friends and family. đđĽłđđ At dinner on Thursday, Terri was told me about an NBC feature story on a man named Rakesh, living with ALS from a rare genetic mutationâso rare itâs called a ânano rareâ condition.
Friday, August 29, 2025
Good morning, everyone. Thank you for being here today. Last night we had dinner with my old IMC work friendâmy âwork wifeââTerri, and her sister Marilyn. (For those who donât know, IMC was the company I worked at before it merged with Cargill and became Mosaic.) Terri and I worked side by side for 20 years, so itâs always a treat to reconnect. Marilyn lives with a rare neurological condition called Transverse Myelitis (TM), which causes inflammation of the spinal cord.
Thursday, August 28, 2025
Good morning all, and thank you for walking this ALS journey with me. Iâve shared before about one of the more unpredictable symptoms of ALS: pseudo bulbar affect (PBA). About half of ALS patients experience itâsudden waves of emotion that come out of nowhere. A couple weeks ago I was prescribed a drug called Nuedexta to help manage it, but swallowing the pills was too difficult…I kept choking them back up.
Wednesday, August 27, 2025
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.
Tuesday, August 26, 2025
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.
Monday, August 25, 2025
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.
Sunday, August 24, 2025
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.
Saturday, August 23, 2025
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.
Friday, August 22, 2025
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!!
Thursday, August 21, 2025
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?
Wednesday, August 20, 2025
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.
Tuesday, August 19, 2025
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.
Monday, August 18, 2025
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.
Sunday, August 17, 2025
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.
Saturday, August 16, 2025
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.
Friday, August 15, 2025
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.
Thursday, August 14, 2025
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.
Wednesday, August 13, 2025
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?