Chris Johnson now speaks through a device that recreates his own voice, guided by the movement of his eyes.
The former Tennessee Titans running back used it to share the news of his diagnosis.
Johnson, 40, revealed he has been diagnosed with ALS in an interview with Michael Strahan that aired Monday, June 29th. He said the diagnosis came last year, when he was 39 and in what he described as the prime of his life.
The disease has moved quickly. Johnson said it has progressed far faster than he ever imagined, taking the speed and movement that once made him one of the most electric players in the league for a decade.
What is ALS
ALS stands for amyotrophic lateral sclerosis. It is also called motor neuron disease, or Lou Gehrig’s disease, after the New York Yankees great whose 1930s diagnosis first brought it to public attention.
The condition attacks the nerve cells in the brain and spinal cord that control voluntary muscle movement and breathing. As those cells break down, muscles weaken. Over time the disease reaches the muscles needed to speak, eat and breathe.
There is no cure. The NIH says most people with ALS die within three to five years of their first symptoms, usually from respiratory failure, though around one in 10 live a decade or more. Treatments exist that can slow how fast it spreads, but they cannot stop it.
Johnson said his case is what doctors call sporadic, meaning there is no clear inherited or genetic cause.
Speaking to USA Today, he said: “There’s no history of ALS in my family. My doctors believe my case is what’s called sporadic ALS, which is actually how the vast majority of ALS cases happen.”
Around 90 percent of cases are sporadic, according to the NIH.
The link between ALS and football
Johnson is not the first NFL player to face this. His former Titans teammate Tim Shaw was diagnosed in 2014 at age 30 and is still living with the disease more than a decade on.
Research from Boston University’s CTE Center, released in 2021, found that professional football players are around four times more likely to develop and die from ALS than the general adult male population.
The center said it could not confirm why, but pointed to repeated head impacts and traumatic brain injury as possible factors.
Johnson has acknowledged that the cause of his own case is unknown, and his doctors classed it as sporadic.
Why Chris Johnson went public
Johnson said he shared his story to push for awareness and research, and to change how people see those living with the disease.
He said: “I want people to know that I’m still me. ALS has changed what my body can do, but it hasn’t changed who I am.”
“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 Titans, where Johnson spent six seasons and still ranks among the franchise’s leading rushers, offered their backing.
Owner Amy Adams Strunk said in a statement that his leadership and impact on Nashville had “written him permanently into the story of this franchise,” and that the team would stand with him throughout his journey.
Johnson, who shares four children with his wife Brittany, said his family is the reason he intends to keep fighting.
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