My ALS Journey: Gratitude, Diagnosis, and Determination
Dear Friends, Family, Colleagues, and Supporters,
I want to take a moment to express my deepest gratitude and share an honest reflection on my journey with ALS. My story began quietly in 2020. I started noticing strange shifts in heart rate, breathing, and energy levels. These symptoms seemed easy to explain away in the middle of a pandemic. I was a busy father and healthcare provider working full-time in pain management and psychology. Like many, I attributed my symptoms to stress, anxiety, and post-COVID fatigue. I received multiple temporary and tentative diagnoses, as is often a part of the diagnostic process of ALS. Since 2020, I felt something wasn’t right. Despite focusing on fitness, playing pickleball, and improving my diet, I didn’t feel stronger. I felt weaker.
The Diagnosis
Years of testing and evaluation, with a repeated evaluation by my neurology team this year, showed clear signs of denervation and muscle atrophy, classic evidence of motor neuron disease. The pattern was clear. Combined with imaging and functional decline, the diagnosis was confirmed: Respiratory-Onset ALS.
This rare form affects just three to four percent of ALS patients. Based on national incidence rates, it is likely that only a few individuals in Indiana are living with this specific form of ALS.
Reframing the Past
After that diagnosis, a memory surfaced. Late last year or earlier this year, I had played in a local pickleball league. Only after my most recent pulmonology appointment did I realize that I had played against my new pulmonologist (He and his partner beat my partner and me.) At the time of my participation in this league, I had no idea that I had progressive neuromuscular failure. That game now represents something bigger for me. It shows how hard I was fighting without even knowing what I was fighting.
The ALS Walk, A Bittersweet Victory: September 20, 2025
https://secure2.convio.net/alsa/site/TR/Walks/Indiana…
A few days ago, I received an email from the ALS Association of Indiana about their annual Walk to Defeat ALS. I hesitated. I asked myself, “will I be able to attend or what if I can’t.” But a couple close friends encouraged me. One even joked, “We’ll be your …” With that kind of humor and love behind me, I decided to go for it.
I created Team Hutner, set an initial fundraising goal of two hundred fifty dollars, and shared the page. That goal was met almost instantly. I raised it to five hundred dollars, then again to two thousand dollars.
In less than twenty-four hours, we raised nearly twenty-five hundred dollars.
Please know, none of that money goes to me. It goes to the ALS Association. The funds support research, patient support, advocacy, and equipment access for others facing this devastating diagnosis. This is not about me. It is about a cause much greater than me.
A Heartfelt Thank You
To those who donated, commented, or shared words of encouragement, thank you. Your kindness gave me a sense of purpose and hope during one of the hardest periods of my life.
To my family and friends, to my wife and children, to my children’s friends and my wife’s friends, thank you for standing with us.
To my professional colleagues, both in behavioral health and pain management, your support means more than you can know.
To my physicians: Parkview Neurology, Parkview Family Medicine, Parkview Pulmonology, and the Cleveland Clinic Neuromuscular/Pulmonary and Thoracic Teams.
And to the caring individuals in my employers HR and administration at Parkview Health, the flexibility have allowed me to focus on care, not red tape.
You have all given me something ALS cannot take away. Dignity, support, and peace of mind.
What Comes Next
I have lost weight, strength, my ability to swallow normally, and parts of my identity. I have begun using assistive devices. I sleep with a ventilator. I am facing tough decisions about future feeding tubes and long-term support. Every medical decision now is a trade-off, hoping to preserve function without compromising quality of life.
But I still have my mind. I still have love. And I still have purpose. I want to do my profession that I started aspiring toward at the age of 17. I remain future focused!
Like Lou Gehrig, I can honestly say, I consider myself the luckiest man on the face of the Earth.
The Lou Gehrig Society’s motto is, Live Like Lou. Their mission is, Leave ALS better than we found it.
I believe we did just that, together, over these past twenty-four hours.
If you would like to learn more about ALS and the great advances being made, please look up Steve Gleason’s Foundation, https://teamgleason.org (https://teamgleason.org/), https://www.als.org/support/states/indiana, https://www.livelikelou.org (https://www.livelikelou.org/), and https://www.iamals.org (https://www.iamals.org/). Also Amazon has two documentary films that provide a glimpse into ALS. Both of these can be linked to via teamgleason.org (http://teamgleason.org/) and iamals.org (http://iamals.org/).
With endless gratitude,
Brian D. Hutner
Fort Wayne, Indiana