PHOENIX – Chris Johnson was 40 years old when he told the world that his hands had started to ignore him.
It started with small inconsistencies. He experienced weakness in his right hand 10 to 14 months before his diagnosis. His grip and body didn’t feel as strong as an NFL player expects.
By the time Johnson went public with a diagnosis he received the previous year, his doctors had labeled his progression “rapid.”
Johnson was diagnosed with sporadic ALS, the most common form of Amyotrophic Lateral Sclerosis, accounting for 90% to 95% of all cases. There is no known cause, no family history and no known cure.
ALS is a degenerative disease that attacks nerve cells in the brain and spinal cord, gradually taking away a person’s ability to control their muscles. Over time, the patient loses the ability to eat, walk and speak.
ALS is universally fatal. The average survival time is two to five years from the initial diagnosis. About 10% to 20% of patients live 10 years or longer.
“Honestly, I don’t know if you ever fully process it,” Johnson said during an interview with ABC’s “Good Morning America” on June 29. “At first you’re in shock. Then you realize you have two choices. You can give up or you can fight. I chose to fight.”
The fact Johnson has no family history of ALS may sound surprising, but it is not.
“Diagnosis of sporadic ALS that is not running in families is the majority of ALS patients, actually,” said Dr. Robert Bowser, a researcher at Barrow Neurological Institute in Phoenix. “Only about 10 to 15% of ALS patients have it running in their family.”
Johnson’s family life has remained relatively private since his retirement from the NFL in 2018. He and his wife Brittany have four children together, which include his twin sons CJ and Kaden. Brittany shared a video of Chris and their daughter Honey Love and Chris during his early battle with ALS.
Bowser noted an important fact about those kids: Johnson likely is not passing anything down to his four children. But even within a narrow age bracket, the disease remains unpredictable.
“There’s variability in the rate of disease progression, even for someone who is 39,” Bowser said, noting Johnson’s age when he was diagnosed.
While Bowser said Johnson’s case isn’t out of the ordinary, that doesn’t change the dire prognosis.
“I don’t think it’s unusually rapid for his case,” Bowser said. “It varies from person to person. Hearing rapid progression as part of his disease is usually not a good prognosis moving forward.”
Chronic traumatic encephalopathy (CTE) is a progressive neurodegenerative brain disease linked to a history of repetitive head trauma. Its link to the NFL has been debated for years, but a Boston University study also found that NFL players are three to four times more likely to suffer ALS than the general male population.
Bowser does not dismiss those findings, but he also won’t call them settled science.
“I’m not 100% convinced there is [an increase],” he said. “At the same time, there’s definite indications that there is a link, that repetitive head traumas can be a factor that can induce a disease like ALS.”
Johnson played a decade in the league, including three seasons for the Cardinals from 2015-2017. As a premier running back for more than half his career, Johnson was no stranger to getting hit repeatedly.
The complication that Bowser noted is in the data BU produces.
“It’s a postmortem program,” he said. “The cases that they’re getting are from individuals that pass typically with the main question, ‘Do they have CTE or not?’ Out of the thousands of people that played in the NFL that have passed in the last multiple decades, the majority of them did not have ALS.”
Bowser’s own research offers more than statistics. In a study with Arizona State University, colleagues used mice to model repetitive head trauma. Researchers found a protein called TDP-43, which is at the forefront of most ALS cases.
TDP-43 turns up abnormally in the spinal cord’s motor neurons, even though the spinal cord was never affected, only the head was.
For families living within this reality, science is secondary to survival.
Taryn Norely, the president and CEO of ALS Arizona, said the organization currently supports nearly 600 people statewide, with an estimated 100 more it hasn’t reached. She said the numbers track a national prevalence rate of roughly one in 100,000.
The financial weight of treating ALS is overwhelming. It costs an estimated $200,000 per year to live with ALS.
ALS Arizona runs on an equipment loan closet program with roughly $75,000 worth of gear per household, spanning families co-pays that can cost up to $8,000 for a single wheelchair.
“A patient will come in quarterly to the appointment,” Norely said. “And at that time, they will see a neurologist. They’ll see a respiratory therapist, a speech therapist, a physical therapist.
“The wonderful thing about our clinics is that they are a multidisciplinary approach.”
Since Johnson went public, Norely said the response has outpaced anything she’s seen before, including the surge after actor Eric Dane’s diagnosis.
“I was talking to a colleague and I’m like, ‘Wow, we thought Eric Dane was big,’ but I just feel like so many people are reaching out to me through text, emails, everything, saying, ‘Oh my gosh, I can’t believe Chris Johnson’… It’s pretty unreal.” Norely said.
For former players, the diagnosis is eye-opening on a personal level. Scottsdale Chaparral High product Lyle Sendlein, who played center for the Cardinals for nine seasons, watched Johnson use a communication screen to speak on his “Good Morning America” appearance.
“He was a real pro – tough and fast and smart,” Sendlein said June 30. “I took the news kind of hard. I haven’t spoken to him in a long while, but I see him on TV every now and then, looks healthy and fine, and then yesterday morning, seeing him use a screen to talk — just awful.”
Sendlein’s concern is not only about disease risk. It’s about what happens after the NFL is done for a player.
“I don’t think long-term healthcare is a priority for the NFL,” he said. “You only get health insurance for five years after you retire. Other sports get lifetime health insurance.”
Sendlein said there are lingering concerns that never go away.
“Is my vision like that? Is there ringing in my ears? All these things you feel,” he said. “You kind of go in your mind thinking, ‘Well, maybe I should have taken that day off.’ You try not to sit and think on it, but it’s there. It’s always in the back of your mind.”
Chris Nowinski, the co-founder and CEO of the Concussion Legacy Foundation and a co-founder of Boston University’s CTE Center described the tight grip the NFL has on the conversation between CTE and ALS.
Nowinski’s path to becoming the leading voice on football and brain diseases is unlike anyone in the field. A former defensive tackle at Harvard, Nowinski ended up a professional wrestler with the WWE.
A concussion in the ring ended his career. His researchers from BU’s CTE Center were the first to publish evidence linking repetitive head trauma to motor neuron diseases like ALS.
“The NFL has a lot of influence with the media,” Nowinski said. “What we’ve known over the years is that if a broadcast platform talks about CTE, they will get a lot of backlash from the NFL. People at the NFL office will call them and tell them that they should not cover CTE in that way.”
The NFL has been silent following Johnson’s announcement. There has been no public statement or acknowledgement of increased risks of ALS in its players. The Tennessee Titans, New York Jets, Cardinals and NFLPA have all released messages of support for Johnson. The league itself has not responded.
While the NFL has made no public comment, research is quietly happening at the team level.
Bowser is hoping to work with the Cardinals and the NFL. There is an institutional relationship through a Barrow-Cardinals brain health partnership. They test players’ blood, drawn both before and after the season, to track biomarkers tied to accumulating head injuries before symptoms appear.
“We want to gather much more information and knowledge about biomarkers in the blood,” Bowser said.
Johnson is hoping more research takes place.
“I hope the NFL steps up, invests in research and continues working to protect players — both now and for generations to come,” he said on his “Good Morning America” appearance.
For now, the connection between football and ALS is concerning enough to warrant attention, but still lacking enough definitive data to answer a nagging question. Johnson’s diagnosis has not answered that question. It has just made it impossible to keep ignoring it.
“It’s continued to progress much faster than I ever imagined,” Johnson told the show. “I want people to understand just how quickly ALS can attack your body. Just over a year ago, I was picking up my 7-year-old daughter so she’d make a wish with her birthday cake. Today, I couldn’t do that.”
Republish our articles for free, online or in print, under a Creative Commons license.
