New Orleans father defies ALS prognosis, celebrates life beyond a five-year diagnosis
‘I’m not dead yet’: How one father’s attitude toward ALS is changing the way his family sees life
NEW ORLEANS (InvestigateTV) — In September 2019, Brian Jeansonne was on a run when he noticed his left foot dragging on the ground. Eight months later, he received a diagnosis that would change his life and the lives of his family forever: amyotrophic lateral sclerosis, or ALS.
The Mayo Clinic describes ALS as a deadly disease with no known cause or cure.
It affects nerve cells in the brain and spinal cord, causes progressive muscle loss and eventually affects the muscles needed to move, speak, eat and breathe.
Jeansonne, a father of five, was given two to five years to live. He has exceeded that prognosis.
‘I’m not dead yet’
Rather than retreat from life, Jeansonne has leaned into it. Over the past year, his family marked graduations, took trips and attended concerts — including a last-minute Paul McCartney show.
He has also built a following on TikTok, where he shares his journey living with ALS. As of January 2026, more than 400,000 people follow him on the platform.
His 49th birthday became a celebration of resilience, complete with a theme he chose himself.
“Brian is the one who came up with the theme of ‘I’m not dead yet,’ and so that’s been kind of a fun slogan for this year,” his wife, Kristy Jeansonne, said.
A disease that costs as much as it takes
ALS is a particularly cruel disease. It progressively robs patients of muscle control, speech and eventually the ability to breathe.
Kristy Jeansonne said it can cost up to $200,000 a year to keep an ALS patient in Brian’s condition alive. Through a network of family, friends and even strangers, she says Brian is not just surviving, but he is thriving.
“At the same time, it’s a lot of work and I do remind myself that this life is not normal,” she said. “Some days I’m like, why is this so hard? Why is it still hard?”
Finding freedom in the fight
Despite the physical toll, Brian Jeansonne says ALS has deepened his family’s bonds.
“My kids are 21, 20, 19, 17 and 14. We have a beautiful relationship with all five and they have a great relationship with each other,” he said.
He said they have an open-door policy, where they can talk about anything.
“I think that the disease has brought our lives closer and that is the beauty in the tragedy that life has dealt us,” he said.
He also rejects the idea that his limitations define him.
“I imagine that when I pass from this earth, some will say Brian is finally free. He can walk and talk and eat and breathe, but this sentiment will be misguided because I don’t need any of those things to be free. I am experiencing total freedom right now, and that is worth more to me than even the abilities that I have lost.”
He expressed deep gratitude for those who have supported his family.
“I have so much gratitude. I’m grateful to be here today. I’m grateful for my wife and my kids who I get to share this wonderful life with. I’m grateful for my caregivers and for all the love and support from all of those who love and support us.”
Earlier diagnosis on the horizon
According to the ALS Association, many people are diagnosed after the disease has already taken significant hold.
While there is no definitive diagnostic tool, a 2025 study shows a blood test developed by Brain Chemistry Labs could reduce diagnostic delays and improve patient outcomes.
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