How Does CTE Affect Brains? One Expert Says It's A 'Public Health Problem'
Chris Nowinski is the CEO of the Concussion Legacy Foundation, an organization dedicated to concussion and Chronic Traumatic Encephalopathy — or CTE — research and education. He also does outreach for Boston University to help recruit brain bank participants, which means calling families who recently lost loved ones to ask if they’d be willing to donate their brains for research.
"I do not like to make those calls," Nowinski said. "I make those calls because we have to make those calls if we want to understand what's happening inside the brains of people who have taken thousands of head impacts and are changing."
There was one call he didn't have to make recently to ask for a donation. According to the York County Coroner’s Office, the family of Phillip Adams, a former NFL player who police said killed six people in a Rock Hill, South Carolina, mass shooting April 7 before taking his own life, agreed to donate his brain to determine if he had CTE.
CTE is a degenerative brain disease found in athletes, military veterans, and others with a history of repetitive brain trauma, and has been known to cause cognitive impairment, depression and emotional instability, among other symptoms.
Along with Nowinski's research, TED TALK, and numerous interviews he’s given on the dangers of head injuries and CTE, you may recognize him from his former life.
In the early 2000s he was a professional wrestler in the WWE.
"Chris Harvard" was his stage name — a play off of his alma mater, Harvard University. Chris Harvard was a bit of an obnoxious bad guy who always liked to remind his opponents where he got his degree from.
His WWE career was cut short in 2003 due to concussions. He says at the time he didn’t understand how much they were affecting him. He continued to wrestle and put himself in danger.
"I was completely reckless with my brain," he said. "And I have probably laid down some serious problems that will begin to manifest — if they aren't already — over time. If I was talking to my younger self, I would say, 'Don't let anyone hit you in the head.'"
Which is not always easy to avoid in contact sports. Nowinski points out it’s not necessarily the concussions that lead to CTE — those are just the head injuries you notice. Repeated injuries to the head over time are dangerous even if they don’t lead to losing consciousness or a bad headache. Athletes who play sports like football, soccer, rugby, ice hockey, baseball — even bobsledding — can be at risk for head injuries.
"But the threshold for damaging your brain is actually below a concussion," he said. "So you can take plenty of hard hits that you feel fine for but you're triggering what we think is an inflammatory process that is starting to rot your brain."
Adams, the gunman in the April 7 mass shooting, played football at Rock Hill High School and South Carolina State University. He went on to play six seasons in the NFL. He had two known concussions over three games in 2012.
His sister, Lauren Adams, told USA TODAY that her brother’s “mental health degraded fast and terribly bad,” and that “there was unusual behavior.”
The York County Coroner’s Office is working with Boston University on the CTE study.
Even though the shooter died from a self-inflicted gun wound to the head, Nowinski says a CTE study is still possible.
"You do not need the entire brain to get a CTE diagnosis, although that's the best way to study it," he said. "But CTE is often throughout the brain and its very specific regions of the brain. And so, in most cases, the diagnosis is able to be made."
A CTE diagnosis can only be made postmortem, but Nowinski says there are signs and behaviors that can be present in a person while they are still alive. Nowinski says when someone has CTE, lesions have spread throughout the brain because of repeated head injuries, which change the way the brain functions and how a person acts.
"You start having problems with memory and cognition," he said. "And you often have problems with mood or behavior — what they call neurobehavioral dysregulation."
Aggression, mood swings, anxiety, paranoia and impulse control problems are also symptoms of the disease.
Nowinski has multiple examples of athletes who committed acts of violence before dying by suicide, and who were later diagnosed with CTE. One of those examples is the wrestler Chris Benoit.
"My third brain that I helped procure for research was someone I'd known for years who killed his wife and child before he killed himself," he said. "I'm horrified by these things happening, and it's why I've committed my career to trying to figure out why this is happening, how do we stop it from happening, and how do we help people who have taken thousands of hits to the head and may have problems related to that."
Close family members are often the best at diagnosing CTE, Nowinski says, because they witness these changes in behavior.
"With our brain bank of a thousand brains, two out of every three times a family member donates the brain of their loved one, that person has CTE," he said. "And so family members are incredibly good at diagnosing it — like, shockingly good. They're nearly as good as doctors are diagnosing Alzheimer's disease. So it either tells you this is very widespread in the population of people who have taken thousands of head impacts, or it creates very specific and obvious changes to your personality and problems in your life."
Nowinski points out if CTE is found in someone’s brain who committed an act of violence, the diagnosis is not meant to justify their actions.
"People often see CTE used as an excuse for behavior. But the reality is that's not why the research is being done," he said. "The research is being done partially because multiple people have been involved in similar situations who have been diagnosed with CTE, and there might be a connection between the disease and this sort of behavior. And if that's the case, this is a public health problem. And therefore we need to understand what is exactly happening here so we can protect and prevent the next one."
Because of an increase in brain bank donations in recent years and delays with the pandemic, Nowinski says it's hard to say what the turnaround for a CTE study will be.
It could take a year he said, before results from Adams' brain are ready to be shared.