The Search for Truth on Concussions and CTE, And How Australian Doctors Can Help

A Conversation with Chris Nowinski

Chris Nowinski was an athlete who grew up outside of Chicago. When he reached college age he was recruited to play football at Harvard University. After graduating he decided to join the WWE as a professional wrestler, which he did for the next two years. One night in June 2003, Chris was concussed by a kick to the head during a WWE Raw event.

Like many pro athletes, he wrote the experience off as no big deal and continued wrestling night after night. It wasn’t until five weeks later that he finally admitted to himself that the physical symptoms he was experiencing were growing increasingly troubling.

This was particularly apparent when he developed REM Behaviour Disorder, a sleep disorder that causes sufferers to act out violent dreams — sometimes kicking, punching, vocalising, and even jumping from bed. After hurting himself during one such event, Chris realised he had a problem.

He quit his profession as a wrestler and after visiting eight different doctors he finally met Dr. Robert Cantu who knew right away that Chris had post-concussion syndrome, a condition that occurs when a person’s concussion symptoms take longer than normal to heal.

Dr. Cantu also explained Chronic Traumatic Encephalopathy (CTE) to Chris, a condition previously known as “punch drunk” because it was thought to only exist in boxers. While he shared that CTE can only be diagnosed after death, he suggested it might be responsible for some of Chris’ symptoms.

What is CTE? How does it affect the brain?

Chronic Traumatic Encephalopathy (CTE) is a degenerative brain disease commonly found in athletes, military veterans and others with a history of repetitive brain trauma. According to Concussion Legacy Foundation, “in CTE, a protein called Tau forms clumps that slowly spread throughout the brain, killing cells’.

Evidence suggests that CTE is caused by repeated hits to the head over a period of several years. The hits don’t need to be concussive. Research indicates that sub-concussive hits to the head are also a contributing factor.

Patients typically present symptoms of CTE in their late 20s or 30s that affect mood and behaviour — like impulse control, aggression, depression and paranoia. As the disease progresses, CTE victims may also begin to experience memory loss, confusion, impaired judgment and dementia.

Real life examples of CTE in athletes


Soon after meeting Dr. Cantu, Chris went on a deep dive in search of athletes who had been diagnosed with CTE after death. One athlete, NFL Center Mike Webster suffered dementia by the age of 50. Unfortunately, after his NFL retirement, he was sporadically homeless and prone to bizarre behaviours, like using superglue to glue his teeth back in once he began having problems with them.


He also struggled to sleep and would periodically ask family members to Taser him, so he’d pass out and be able to get some rest. Of the first 111 NFL players whose brains were checked for CTE, 110 tested positive for the disease. Likewise, of the first 53 college football players they looked at, 48 had CTE.


Although less information is available about former offensive linesman for the Pittsburgh Steelers, Terry Long, he did attempt suicide twice, ultimately killing himself by drinking antifreeze in 2005. After his death, an autopsy revealed he too had CTE.


Closer to home, rugby player and coach, Barry “Tizza” Taylor was the first Australian athlete diagnosed with CTE, after he had been dealing with dementia and engaging in odd behaviours for a lengthy period of time.


Chris’ story becomes a book and documentary


After Chris visited Dr. Cantu and learned about the link between concussions and brain trauma he realised that brain injuries were vastly misunderstood in the sports world.


After playing eight years of soccer, eight years of football and then having a career as a professional wrestler, Chris realised he had never been taught the signs of a concussion, the value of resting after experiencing one, or even what the long-term effects were of repeated head impacts.


To help rectify this, Chris wrote the book, Head Games: Football’s Concussion Crisis.  The aim of the book was to help coaches, players and medical professionals learn more about CTE.


While the book was slow to catch on, because it came out before CTE was widely understood, over time it built momentum and was later picked up by Steve James, director of the highly acclaimed documentary, Hoop Dreams.

Director, Steve James, used Chris’ book as the foundation for his documentary, Head Games: The Global Concussion Crisis. The documentary went on to win Best Documentary at the 2012 Boston Film Festival and Sports Illustrated’s Best Sports Movie of 2012.


Chris and Dr. Cantu start Concussion Legacy Foundation


After writing Head Games, Chris knew that he still wanted to do more to help educate athletes and doctors on the causes and effects of CTE. He founded the nonprofit, Concussion Legacy Foundation, with renowned neurosurgeon Dr. Robert Cantu.


Today, Chris’ main mission is to find brain donors. This usually involves having long difficult conversations with the families of athletes suffering from the effects of CTE.


Last month, Chris’ organisation received its 600th brain donation and has a list of thousands of others who have pledged to donate their brains when they pass on.


Australia’s first brain bank opens in 2018


Earlier this year, a decade on from starting Concussion Legacy Foundation, Chris continued his strive to expand research in CTE by teaming up with scientists in Australia to open the doors to Australia’s first brain bank.


The Australian Sports Brain Bank is a collaboration between the Royal Prince Alfred Hospital’s Department of Neuropathology and the Brain and Mind Centre at the University of Sydney. The aim of the organisation is to collect and study athletes’ brains, so the organisation can learn more about CTE.


Chris encourages Australian doctors to support the organisation’s very important work by encouraging athletes in high-risk groups to donate their brains, by making a pledge to Concussion Legacy Foundation’s Global Brain Bank.
What can a doctor do about CTE?


As a medical professional, it can be difficult to know how to diagnose and treat CTE. Unfortunately, there is no written diagnostic criteria. There isn’t a specific treatment protocol either. Because CTE is relatively new to the medical community, a doctor’s best resource for learning more about the disease is Concussion Legacy Foundation’s resources page. There you’ll find fact sheets, videos and interviews that provide more information about CTE.


Additionally, a key component of  Concussion Legacy Foundation’s mission is education. Chris shares, “By educating high-risk patients on the signs of a concussion and how best to treat concussions doctors can help put an end to CTE.”


Finally, as with any disease, research is so important. If you wish to fund Concussion Legacy Foundation’s initiatives, you can donate here.


You can also encourage high-risk athletes to donate their brains, by making a pledge to  Concussion Legacy Foundation’s Global Brain Bank. These pledges can go a long way toward helping medical professionals understand how to treat, diagnose and prevent CTE.

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