NFL retirees submit to tests to identify fatal brain disease
By Diane Carman Posted on May 1, 2013 @ healthpolicysolutions.org
It was at the funeral of former teammate Lee Roy Selmon that Dave Stalls confronted his own mortality.
Selmon, who played alongside Stalls on the defensive line of the Tampa Bay Buccaneers in the 1980s, died of a massive stroke on Sept. 4, 2011. He was 56, the same age as Stalls.
As Stalls looked around at the mourners at the service, something struck him. None of the other members of that Tampa Bay starting defensive line was there. Many of them – including the defensive line coach – were dead.
“It gets really personal,” said Stalls.
When he realized he was among only a few members of that defensive line left, “I started to think, ‘Do I have six months? A year? Thirty years?’”
Stalls came home and started making some life-changing decisions. He resigned from his position as director of Big Brothers Big Sisters of Colorado and set out to create Street Fraternity, a nonprofit program to help young men overcome their violent past. He hiked the Camino de Santiago in Spain with his son.
And he enrolled in a research project with 99 other former NFL players and 50 other elite athletes at Boston University. The goal: to identify the indicators that could enable doctors to diagnose chronic traumatic encephalopathy, or CTE, in living patients and find ways to treat it.
Before the condition was called CTE, it had many other names, but was most commonly known as “dementia pugilistica” or being “punch drunk.” When it was identified back in 1928, it was thought to occur only in boxers who suffered repeated blows to the head, and since that population was relatively small, little research was done on it for decades.
Over the last 10 years, however, post-mortem studies on the brains of deceased boxers, football players and other athletes in contact sports have found striking evidence of a very specific kind of brain damage.
Dr. Ann McKee, a professor of neurology and pathology at Boston University School of Medicine, has found tau protein and other signs of damage in their brains and, suddenly, concerns about the long-term impacts of concussions and sub-concussive blows to the head have reverberated across our sports-obsessed culture.
Still, there has been no way to diagnose the condition in living patients, guys like Dave Stalls.
Finally, in 2011 the National Institutes of Health awarded its first grant for the study of biomarkers for CTE in living patients. Robert Stern, professor of neurology and neurosurgery at Boston University School of Medicine and a colleague of McKee’s at the Center for the Study of Traumatic Encephalopathy, is leading that study, which is dubbed DETECT (Diagnosing and Evaluating Traumatic Encephalopathy using Clinical Tests).
Stalls said he volunteered to join the study (Stern would not confirm his participation due to strict confidentiality rules), and he spent two days in Boston in January undergoing a battery of tests.
For many years, Stern’s role in CTE research included interviewing family members and friends after a death linked to head trauma. As a result, he became the leading expert on the clinical presentation – the symptoms – of CTE.
For this study, he gets to talk to people who suspect that they might be living with the condition and could help him piece together evidence of possible early signs.
“What we know of CTE is that it has three primary areas of impairment,” Stern said. Those are: cognitive impairment, including memory problems and executive function or planning; behavioral changes, including impulse control, an explosive temperament and being verbally or physically violent; and mood disturbances, such as depression, hopelessness or suicidal tendencies.
So a big part of the testing involves interviewing the participants, administering tests of their ability to remember things and organize information, evaluating them for signs of psychiatric or behavioral problems, and requiring them to report on their own impressions of their condition.
Other tests are designed to evaluate the neurobiology of the participants. They include analyses of blood and spinal fluid, neuroimaging using advanced MRI (magnetic resonance imaging) and MRS (magnetic resonance spectroscopy) technology to perform a virtual biopsy of the brain, and a specialized form of EEG to measure electrophysiological changes in the brain.
“It’s been such an incredible joy and honor to work with these guys,” Stern said of the former players. “These wonderful heroes have been eager to participate, giving of themselves and courageous in all ways.
“Our mutual goal in all of this is not to ruin or destroy the game of football, but to protect it.”
Stalls said his two days in Boston – ironically the week before the Super Bowl – were packed with examinations of all kinds.
“There were all these tests,” Stalls said. “They’d tell you a story and you had to repeat it. They’d give you a list of words and you’d have to remember as many as you could.”
But the one that Stalls, still an imposing figure with broad shoulders and an athlete’s powerful physique, shivers as he recalls it was when a clinician stuck a needle into his back to draw spinal fluid.
“They all hate that one,” said Stern, who insists that it doesn’t hurt … much.
The 100 former football players who are participating in the study were selected because they played positions that required them to use their heads – literally — for brute force.
Kickers and quarterbacks are not included, Stern said, because while they sometimes get big hits in the game, “they’re not getting hit over and over again.”
A lineman, in contrast, “hits his head against his opponent almost every play in every game and every practice.”
Stern estimated the impact at 15-20 g-force. “It’s the equivalent of driving a car at 35 mph into a brick wall 1,000 to 1,300 times a season.”
The test results of this group will be compared to those of 50 other elite athletes who don’t slam their heads into virtual brick walls as part of their sport – former baseball players, rowers, swimmers.
“These are people who played at the highest level of their sports, had similar lifestyles and similar bodies, but never hit their heads,” Stern explained. “If we know the one variable that is the necessary ingredient – hitting your head over and over again – that’s the one thing we want to control for.”
Other factors that may play a part in the development of CTE include genetics and the age at which the head trauma first occurred.
When the researchers asked Stalls how many times he experienced a concussion in his football career, he said he honestly had no idea.
“I remember one play where I got my bell rung really hard.”
He was playing with the Cowboys in 1978 or ’79, and was opposite Earl Campbell. “With a guy his size with legs so huge, there was no good option. I went in low with my head toward his legs and got a knee into my head.“I lay on the ground for a while and I was in another world,” Stalls said. “Then I got up and got back in the huddle.”
Most of the time, though, the head traumas were so familiar they weren’t even memorable.
“How do you even define a concussion? When they told me their definition, I said it was hundreds. It happened almost every day,” Stalls said. “When they asked me for a number, I said, ‘Let’s just say 200.’”
NFL supports research
In the early days of CTE research, Stern said the NFL leaders “had their heads in the sand.” Officials from the organization issued statements denying the relationship between the repeated head trauma involved in football and brain disease.
Now, with the evidence mounting, the NFL has provided financial support to Stern’s project with an unrestricted $1 million grant. “They really understand that this is a big issue.”
Players’ organizations are watching the research closely as well and with good reason. Several lawsuits against the NFL have been filed, and former players have begun looking to the organization for support.
Stalls is not a part of any lawsuits at this point, but he doesn’t rule out that possibility.
“I made a lot of money for the NFL over the years,” he said. “Can the NFL make sure my kids won’t be bankrupt from taking care of me if I end up with Alzheimer’s or Lou Gehrig’s disease or Parkinson’s?
“Dying is a lot less stressful than losing your mind. To not know your family or even recognize people. To be unable to take care of yourself.”
Results eagerly anticipated
Stern anticipates completing the DETECT study in about 18 months, but further research on CTE will continue.
“We’re always submitting new grants for similar types of studies and offshoots from our research,” he said.
The hope is that real understanding of the disease will be achieved and lead to effective means of prevention and treatment.
“It’s why this research is so critical,” Stern said.
Evidence of CTE was found in the brains of 34 of 35 professional football players who died and left their brains to the Boston University scientists, he said, “so it’s probably very common. But we have no idea how common.”
Stern said they want to know what other risk factors beyond trauma play a role in developing CTE, how to prevent it and, ultimately, how to treat it effectively.Once they have answers to these questions, clinical trials can begin on potential drug therapies. “Many scientists and pharmaceutical companies are interested in developing drugs to treat CTE,” Stern said. Among them are concepts for “anti-tau” treatments focused on eradicating the protein that seems to play a critical role in developing the disease.
“If we had adequate funding, we would be able to diagnose CTE in living patients within five years,” Stern said. “But financial support for research is at an all-time low right now, and with sequestration, it’s even worse.”
Living for the present
Stalls has no idea what impact those thousands of hits had on his brain, his memory or his life expectancy.
His memory is “terrible,” he said. In a test a year ago, he was asked to name as many words beginning with the letter “f” as possible in 30 seconds. “I could literally do four. I was embarrassed.”
Despite the fact that playing in three Super Bowls ranks among the most exciting experiences in his life, Stalls said he “can’t remember a single play. I can’t tell you the scores. Is that really normal aging?”
Back when he was playing football, players didn’t know what they were doing to themselves. “Sure, we knew we were giving up our knees, our backs, really every joint in our bodies. But nobody thought he was giving up his cognitive ability. Losing your mind is a whole different deal.”
For now, he wants to live life to the fullest.
He offers a tour of the facility he’s assembling for the Street Fraternity, excitedly describing the various rooms, one designed for the young men to vent their frustration and pent-up physical energy, one for contemplation, one for producing music, another for working on computers.
“I haven’t seen anybody do this, helping people acknowledge their violent selves and learn about the aggressive self that is inside each of us,” he said. “During your teen years and your 20s, for a guy that’s a strong piece of who you are.”
Stalls said that’s apparent in combat veterans, in law enforcement professionals and in athletes, particularly those who play violent sports, like football.
“I know I can do this,” he said of the Street Fraternity project. “It’s important work and nobody else is doing it.”
He looks around at the warren of rooms, all painted vivid colors, and imagines them filled with young men with their whole lives ahead of them, men who need help with something he understands instinctively.
“I know I’m going to die. When is the question,” he said. “I don’t feel morose about it at all. It’s just a reality.
“So I’ve decided to use the time I have left as significantly as I possibly can.”