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.
Good morning to you all.
Housekeeping item Iâve heard from people that have subscribed to the blog, that the notification emails when I post an entry donât always get sent. This leads people to believe I havenât posted anything for the day. I donât know why his happens.
Here is my suggestion. If by 8:00 am CST of each morning you havenât received the email notification, please go to the blog and look for the post.
Good morning, my fabulous family and friends.
đ Happy birthday, Joe Stefinsky! đđ
August is a month packed with celebrationsâbirthdays, anniversariesâand a few days that call for quiet reflection on lifeâs fragility.
August 9 â Our 20th wedding anniversary! 𼳠Woohoo! August 10 â ER visit in Northern Wisconsin to check for stroke or brain cancer. Walking and talking were a problem. Preliminary diagnosis: Parkinsonâs (I wish). August 13 â The shitty diagnosis.
Good morning, amazing friends and family.
A few weeks ago, I had the chance to do an interview with a young man named Dean, whose mother passed away from ALS. Dean is 19 and currently traveling across the country to meet others affected by this brutal diseaseâsharing their stories and raising money to help fight ALS. I was honored to be one of the people he chose to visit, and I truly enjoyed the short time we spent together.
Good morning, itâs Monday.
So, Iâve got this feeding tube now to help supplement my nutrition. Still, I enjoy eating real food when I canâand I hope to keep doing so for months to come, until swallowing becomes dangerous or simply no longer possible. But lately, something has changed with my chewing. Over the past week, every time I chew on the right side of my mouth, I end up biting my bottom lip.
Good morning everyone!
Weâre home from vacation. I hated to leaveâespecially knowing a few of my cousins (on the Irish side) are heading up to the lake on Tuesday. But we had other commitments already in place, and I have clinic on Thursday, so we wouldnât have had much time together. Still… Iâm bummed it didnât work out. Sorry, Peter, Jean, and Anne. đ˘
Itâs strangeâwhile I did a little walking up north, I didnât do much else.
Good morning!
Today we leave the tranquility, fresh air, and lazy days of summer in the Northwoods. Itâs been a great weekâand the last full day did not disappoint.
Zack found an active fishing hole just a few hundred yards from the lake house, making it easy to take the boys out and teach them how to fish. Itâs always funny to watch kids touch a fish for the first time.