Notes from my sister…
ALS Clinic Update (Oct 30, 2025)
Yesterday’s appt was long and tiring, but upbeat. Love seeing how much Cecil’s team rallies around them. They are positive, supportive, and excited for the imminent arrival of baby. It’s clear they care about C & G, and that lifts my heart so much. Update below.
- ALS progression continues, particularly affecting respiratory muscles and upper limb strength. Despite decline in respiratory function, overall condition more stable with 24/7 vent/wheelchair support and strong caregiving structure (Grace!! GOAT!!)
- Focus areas: maintain nutrition/weight and breathing stabilization, manage pain/swelling, and continue moving forward with communication support transitions.
- Pain and swelling in hands and shoulder are the main issues now — PT/OT and a shoulder injection are being set up. Continue CBD gummies; increase dosage of opioid patch; may add cipro + celebrex treatment if approved.
- Vent doing well on current settings. Cough-assist not effective but kept for emergencies. Secured nebulizer if needed.
- Speech a bit harder (certain sounds) but strong voice; eating and drinking remain safe. Practicing with a loaner speech device and working on voice banking/cloning; hoping Team Gleason covers copay for eye-gaze device.
- Expanded Access Program clinical trial may open as soon as this winter; others not a fit.
Thursday: Two Superheroes, One Tough Test, and a Whole Lot of Love
“Oh, what’ll you do now, my blue-eyed son?Oh, what’ll you do now, my darling young one?I’ll stand on the ocean until I start sinkin’,But I’ll know my song well before I start singin’.”— Bob Dylan, “A Hard Rain’s A-Gonna Fall”
That song has always felt like a promise — that even when life gets hard, we can still rise, still sing, still know who we are. Thursday was one of those days.
I spent the afternoon with two superheroes — Wonder Woman, Superwoman — and Big D.
I’ll admit, I was nervous heading into this particular ALS clinic. I could tell I’d become more ventilator-dependent, and I knew we’d start with the PFT test — the one where I blow into and from a device to measure my lung strength. The score runs from 0 to 100%, showing how much lung capacity I’ve got left.
The last time I blew, I was at 44%, down from 51% before that. This time, I braced myself. When the tech told me I blew 20%, my heart dropped. I teared up — I knew it had gotten worse, but not that much worse. My sister Bess, mid-bite of her sandwich, tried to stop the tech from giving the score, but couldn’t get her objection out before the number came.
I recovered quickly, cracked a joke, and asked to go again. The second time? Still 20%. For a brief moment, sadness hit hard — but I didn’t stay there long. Because in these rooms, sadness is inevitable, but laughter is a choice.
And as always, Dr. Coleman and Stephanie, my respiratory tech, showed up as the superheroes they are. They weren’t alarmed by the number. Dr. Coleman reminded me that while my lung capacity has been low for a while, my ventilator readings are encouraging — I’m breathing effectively, eating safely, and living life. I’m more dependent on the vent, yes, but it’s doing its job beautifully.
Meanwhile, Dr. Driss gave us a much-needed spark of hope. Though I’m not eligible for early-stage clinical trials because my lung function is below 60%, she shared that I may be eligible for an Expanded Access trial possibly opening this winter. We haven’t given up yet — not even close.
Of course, the day wasn’t without humor. I told Dr. Coleman I’m not an ambiturner — a Zoolander reference — because I’m still learning to drive my new wheelchair. It’s souped-up with every feature imaginable: multiple speed settings, seat tilts, lifts, and adjustments. It’s both fantastically and insanely expensive — basically the Ferrari of wheelchairs.
The rep who delivered it told Grace and me that we were incredibly lucky — insurance companies often deny requests like this at first. And after what we’ve been through, I believe it. Insurance has been an absolute nightmare; poor Grace spends hours every week — sometimes every day — fighting with them. They make everything harder than it needs to be. They suck. But she keeps showing up, keeps advocating, keeps winning.
And yes, the wheelchair is a blessing — even if my driving skills are still a work in progress. Because of the weakness in my right wrist and hand, I have a hard time pushing the joystick to the right. So when I can’t, I just turn left… in a circle… until I finally line up in the direction I’m supposed to go. Coleman got a good laugh out of that one.
The biggest laugh of the day came courtesy of Grace (naturally). A rep from the Les Turner Foundation surprised us with a feeding robot called Obi. It’s an ingenious little machine that helps people like me feed themselves. The room lit up… until Grace smiled and said she’d already secured one weeks ago. The look on everyone’s faces was priceless. She’s always fifty steps ahead.
The reality is, my physical health continues to decline. Breathing is harder. Pain in my shoulders, arms, wrists, and fingers is intense. My fingers and toes are curling, and it hurts. But I’m encouraged that Dr. Driss is referring me to an orthopedic specialist who can hopefully help with the shoulder pain, and that Shirley Ryan AbilityLab is helping us restart physical therapy. Every step forward counts.
Both Mama and Baby are doing great. Baby is strong and healthy. Grace has been experiencing Braxton Hicks contractions, swollen legs and feet, and exhaustion beyond belief — but she’s handling it all with grace (pun always intended). She truly is a Wonder Woman.
The week before the ALS appointment, we took a tour of Evanston Hospital, visiting the labor, delivery, and postpartum floors. We wanted to understand what our stay during delivery will look like — and to make sure there’s a setup that allows me to be beside Grace the entire time. The hospital staff couldn’t have been kinder. Seeing those rooms, walking the halls, and knowing we’ll be together in that space filled us with peace and gratitude. It’s something we’ve prayed for since the day we met.
These clinic days are long and draining — emotionally, mentally, physically. By the time we finished and waited over an hour for a wheelchair-accessible ride home, it was dark. But having Bess and Dave Risner with us made all the difference. My sister is tough, brilliant, and a fierce advocate for Grace and me. Dave continues to do what best friends do — he shows up.
They’re emblematic of so many people in our lives — strong, brilliant women who are fierce advocates, and strong, loyal men who would do anything for us. We are surrounded by an extraordinary village.
That village includes everyone who has supported our GoFundMe, which now allows us to have two incredible caregivers — brothers who trade off shifts, one during the week and one on weekends. Every morning, they help me start my day: giving me a light massage and stretching, brushing my teeth, washing my face, feeding me breakfast, helping me use the toilet and bathe, then getting me dressed and ready for work. They even help with lunch. It’s humbling, necessary, and deeply human — and we’re profoundly grateful for their care, their patience, and their kindness.
We’re exploring adding evening help as well — an incredibly expensive but necessary reality — and we are deeply, humbly grateful for every contribution, prayer, and message.
We’re also working to trade in our car for a wheelchair-accessible van, ideally before the baby arrives. The goal: to make life just a little easier when we bring our little one home.
We are tired but thankful. Scared but faithful. We have a long road ahead, but we’re not walking it alone.
“We are hard pressed on every side, but not crushed; perplexed, but not in despair;persecuted, but not abandoned; struck down, but not destroyed.”— 2 Corinthians 4:8–9
The rain may fall — hard, relentless, and uninvited — but love is louder.
And so is faith.
💙 With love and gratitude,
Cecil & Grace
Secret of My SucCecil 