Guest Voice: Fighting the good fight against multiple sclerosis
In advocating for people with MS, my motto is 'never stop, never quit'
Kevin Byrne grew up in Bronx, New York. A graduate of the U.S. Military Academy at West Point, he was struck by multiple sclerosis (MS) in 1999 while commanding an Army Air Cavalry Troop overseas. Now medically retired, he lives with his daughter, Rogue, in Portland, Oregon. Kevin works to overcome his struggles so he can stand for others. He founded Never Stop Never Quit to expand fundraising and advocacy in the fight against MS.
I’ve always been a fighter. I grew up in the Bronx, and after high school, I went to West Point before my adventures in the U.S. Army. I worked my way up to Air Calvary commander, based in South Korea. And then I found myself thrust into a different kind of fight.
Multiple sclerosis.
Kevin Byrne poses with his daughter, Rogue, with whom he’s made special memories despite his MS diagnosis. (Courtesy of Kevin Byrne)
I was diagnosed with MS in 1999. My first symptoms were manageable — numbness and loss of sensation on my right side. But it was a seismic event in my life: Because of MS, I was permanently grounded from flying. Another flare-up forced me back to the States and out of the Army entirely. It was all I’d done in my adult life, but it was over.
My fight then moved to corporate America. My gait issues weren’t significant, so I learned to live with them. Most of my colleagues never knew. But in 2017, my MS advanced to the secondary progressive type, forcing me into long-term disability.
My challenge has always been difficulty walking, with a very high risk of falling. A serious fall completely tore tendons in my shoulder. Due to MS, I wasn’t a candidate for surgery to repair the damage, so I live with it. But I’ve never stopped fighting to keep my MS in check — researching treatments and trying new options. It’s tough. I’ve been on eight different MS medications but have been rushed to the hospital six times with life-threatening reactions to them, such as deep-tissue infection, anaphylactic shock, and gastroenteritis. A clinical trial I took part in was unsuccessful.
My fight continues
Kevin Byrne’s PoNS device has helped him regain some mobility and go on new adventures. (Courtesy of Kevin Byrne)
And still, I fight! MS can really wear on you, especially if you’re making big investments in treatments and therapies that don’t seem to be working.
Recently, I’ve found a way to improve my coordination, agility, and function by “rewiring” parts of my brain. The Portable Neuromodulation Stimulator (PoNS) I’ve used is a device that, when worn while exercising, leverages the brain’s innate neuroplasticity to activate new pathways around neurological damage. By bypassing parts of my nervous system damaged by MS, I can now do things I never thought I’d do again — like walking miles across New York City with my daughter, getting into adventures, and celebrating every step of Walk MS in Portland, Oregon, coming up May 18.
When MS forced me out of the Army and my corporate job, I returned to graduate school for English and creative writing. I’ve written seven books so far. The first was a children’s book, “My MS and E,” about my daughter Eleanor Rogue. It chronicles a special weekend we shared, laughed, and celebrated, all under the shadow of my MS.
Today, I also channel my energies into helping others with MS through my nonprofit, built upon the battle cry “Never Stop … Never Quit …” Never Stop Never Quit raises money and awareness through walks, bike rides, and activities with the National MS Society.
I’m committed to advocating for others with MS; every moment of every day, my focus is our shared battle against the debilitating effects of this disease. We all experience challenges, but I want my fight and the improvements I’ve seen to inspire hope. And that ideal sits at the heart of a mantra I’ve written that reflects my sense of purpose:
The fight is not over and it won’t be over until a cure is found.
It will never stop … nor will we.
It will never quit … nor will we.
This is why we fight for them!
Never stop … Never quit …
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