- CTE can only be diagnosed in autopsy due to limitations in brain imaging technology.
- People with traumatic brain injury are at much higher risk of serious depression, anxiety and suicide — there are ways to test for this while people are living.
- The NFLPCF, which looks after the affairs of retired players, does not pay for treatment in the neurological program.
The announcement in September that former New England Patriots tight end Aaron Hernandez had severe Chronic Traumatic Encephalopathy, or CTE, when he took his own life in prison last spring at age 27, was tragic, but not necessarily surprising.
CTE is linked with both a heightened risk for aggression (Hernandez had been convicted of killing his former roommate) and suicide. He joined a growing list of athletes whose brains revealed evidence of CTE, according to scientists at Boston University's CTE Center, who examined him post-mortem.
That same month, scientists at Boston University's CTE Center announced that they had identified a potential biomarker that could possibly be used to detect CTE in living patients. Currently CTE, the term for brain damage that occurs after repeated head trauma such as from football tackles, can only be diagnosed in autopsy.
The discovery could lead to "a potential therapeutic target," but ultimately treatments and even diagnosis stemming from the discovery are "too far out to speculate," said Jonathan Cherry, a postdoctoral fellow and lead author on the paper.
But is there anything that can be done for patients now? In fact, a biomarker or blood test is not needed to diagnose severe traumatic brain injury, or TBI, which directly causes CTE when built up over time, as in football, according to Cherry and other researchers. It can be detected in living patients. Every single NFL player whose brain has been found to be afflicted with CTE has displayed symptoms of traumatic brain injury while alive. Both are characterized by problems with thinking and regulating emotions, often manifesting as anger and irritability.
Friends and family can usually tell something is wrong. In one recent study of 111 NFL players' brains, all but one of which had CTE. Ninety percent displayed behavioral symptoms, such as depression, anxiety and anger, while living, according to relatives. Ninety-five percent had cognitive symptoms, such as problems remembering.
Traditionally, treatments for TBI have focused on the cognitive symptoms, improving memory and problem solving. Recently, however, there has been a surge in interest in tackling the emotional problems associated with both TBI and CTE.
"It's a really hot topic," said Tessa Hart, Director of the Moss Rehabilitation Research Institute TBI Clinical Research Laboratory. "If you can't remember things and if you can't express yourself and if you can't comprehend what people are saying to you, you are going to get really frustrated," Hart said. Inability to control one's emotions, especially anger, can often drive people away. This is especially problematic as social support is a major component in rehabilitation.
The most recent issue of the journal of Head Trauma Rehabilitation was dedicated entirely to treating the emotional and anger issues related to traumatic brain injury. Researchers are especially excited about the prospect of delivering therapy via telemedicine, including text messaging and apps, as many people with TBI are isolated, with limited access to health care, and currently receive no treatment for TBI-related anger or other emotional issues.
There are few current app-based interventions specifically for people with TBI, although there are a plethora of general cognitive behavior therapy and de-stressing apps that people may benefit from, including Behavior Tracker.
Hart recently conducted the largest and most rigorous clinical trial testing an intervention for emotional and anger issues related to TBI. In it, 90 people with moderate to severe TBI attended an hour and a half long therapy session once a week for eight weeks aimed at teaching participants skills like self-monitoring and problem solving, while another control group of people with TBI participated in generic talk therapy. Both groups improved significantly.
"Where the field is going is in technology," Hart said. She wants to redesign her treatment into a text-message based therapy. "Many people with traumatic brain injury don't have computers, but they have smartphones," Hart said. "Telemedicine would cut down on expensive face-to-face therapy," and address the social isolation many people with TBI feel.
Another study from the same issue tested a web-based group intervention for people with TBI — 91 individuals were put into random groups of three or four and participated in group therapy via videoconference, in hour-long sessions twice weekly for 12 weeks. Compared to their scores before, after the intervention participants made significant improvements in a host of issues, most dramatically in impulse control, followed by problem-solving, goals, clarity and awareness. Sessions were facilitated by GoToMeeting; participants clicked on an email link to join an anonymous chat.
Without the typical impulse-control mechanisms that get damaged in TBI, "the anger all people regularly experience translates into aggressive behaviors," said Theodore Tsaousides, neuropsychologist at Mt. Sinai School of Medicine who conducted the study. Not everyone with TBI becomes aggressive, however. One of the biggest predictors is alcohol abuse, which factor into the lives of up to two-thirds of people with TBI, and increases the risk of violence dramatically.
In addition to therapy, there's evidence that psychotropic drugs such as lithium, a mood stabilizer prescribed for bipolar disorder, may have protective effects on memory and cognition in TBI patients. Medical marijuana has also been found to be helpful; in one study people with TBI who used medicinal marijuana had a 2.4 percent mortality rate compared to nearly 10 percent mortality rate of people with TBI who did not partake.
"We talk a lot about the negative and problems that need to be solved. One thing I can say about brain injury is that people almost never totally give up," Hart said. "There's an incredible resiliency to a lot of people" with TBI, who are eager for treatments, she said. "I think a lot of professionals underestimate the ability of people with brain injury. People can recover for years and learn lots of new things even if their brain is different."
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Neither Hart nor Tsaousides' studies included former NFL players as participants, as far as they are aware. Tsaousides did not ask participants about the nature of their injury, a decision he regrets. But Mt. Sinai School of Medicine, where Tsaousides works, is one of six medical schools around the nation partnered with the NFL Player Care Foundation neurological program, which evaluates and treats "possible neurological conditions" in retired players, with specialized care coordinated by a neurologist. Tsaousides recruited participants partly by posting fliers around the facility; it's possible some former NFL players participated, though he notes most were recruited online.
The NFL has historically sidestepped the link between CTE/TBI and the mental and emotional problems experienced by current and retired players. Lately there have been some encouraging steps: NFL Chief Medical Officer Allen Sills recently voiced support for exploring medical marijuana for treatment of TBI, a previously controversial stance within the organization. In addition to the neurological program, the NFLPCF, which looks after the affairs of retired players, offers free monthly screening sessions.
There is also the NFL Life Line, a free, confidential hotline open to all current and former players in crisis, who can call (800) 506-0078 and speak with a trained, licensed mental health counselor who can often help connect them with resources. Common topics include "relationship issues, financial stress, difficulty with transition, depression, anxiety, bereavement, chronic pain or suicidal thoughts," Life Line program director Ciara Dockery wrote in an email, noting that such issues are also present in the general population. Retired players and their families are also entitled to eight free therapy sessions, although it is unclear how many avail themselves of this resource.
"So many of these guys are taught from an early age that asking for help means admitting 'weakness,' something they have worked so hard not to show on the field," Dockery wrote. "We are trying to make it okay for them to ask for help, to show them that getting support for themselves is actually a sign of extreme strength."
Even more important, the NFL launched Play Smart, Play Safe, an initiative to drive progress in the prevention, diagnosis and treatment of head injuries. It also aims to improve the way the game is taught and played. The league has pledged $100 million in support for independent medical research and biomechanical research to improve helmet technology.
Still, Chris Kluwe, who retired from the Oakland Raiders in 2013 after previously playing for the Minnesota Vikings and Seattle Seahawks, and has since had a successful writing career, says that the NFL does not provide enough support to departing and retired players. Their struggles have been well documented — about 78 percent go bankrupt within two years of retirement. In addition, there are harrowing individual stories of current and former players detailing suicide, violence and substance abuse.
NFL insurance coverage extends for five years after retirement, after which players are mostly on their own, Kluwe said. Upon retirement, the NFL also provides a modest lump sum for medical expenses, but CTE is a chronic, degenerative disease requiring long-term rehabilitative care, which can stretch players to the limit financially. The NFLPCF does not pay for treatment in the neurological program, although players can apply for grants. It also does not currently offer any telemedicine-counseling services that researchers are pushing for, according to Dockery, the Life Line director, other than technically the Life Line itself, which players can access by calling on the phone.