Something didn’t add up for Kyla Zalapski. Her older brother Zarley, a former NHL defenceman who played for Canada at the 1988 Winter Olympics, was no longer a picture of health. There were dark circles under his eyes and he had uncharacteristically put on weight. Never the most talkative guy, he had become even more withdrawn. He was lethargic and spoke of feeling “foggy.”
On the day before he died last December, Zalapski underwent a check-up in Calgary at Foothills Medical Centre’s cardiac function clinic for viral myocarditis, an inflammation of the heart muscle that had hospitalized him for almost three weeks last October. A clinic nurse told Kyla her brother was in good spirits. He had slowly been working his way back and had become an active member of the Calgary Flames’ alumni.
Then, that night, Zalapski went to sleep and never woke up. The cause of death was eventually diagnosed as a hemorrhagic stroke, the result of a blood clot from his faulty heart. He was 49.
Kyla wanted to know if Zarley had any other health issues lurking in his brain. She was aware he had suffered at least two concussions in his 12-year NHL career, but unsure if he had ever missed a game because of one. To check all possibilities, she had his brain sent to Toronto to be examined. When the results came back from neuropathologist Dr. Lili-Naz Hazrati, it was more than Kyla expected.
An occasional fighter, but hardly one of the game’s physical players, Zarley Zalapski had Chronic Traumatic Encephalopathy (CTE). Not only that, he had more tau (abnormal brain protein) than what was found in another former NHL defenceman, Steve Montador, who died three years ago at age 35.
That might have closed matters for some people, but not Kyla, who says the science on CTE is not always cut and dried. And her doubts are echoed by many in the scientific-research community.
“Concussions and the neurological damage from concussions are real and we need to find better ways to prevent and treat them,” says Kyla, who flew to Toronto and spent six hours with Hazrati going over Zarley’s results and learning everything she could about them. “We also know CTE is a collection of tau. But that’s as far as science takes us … so much more research is needed before we can jump to conclusions.”
Researchers and experts have continuously examined CTE after Dr. Bennet Omalu found it for the first time in a former NFL player 16 years ago. The possibility that concussions or the newly labelled “sub-concussive hits” lead to CTE was given added clout when Boston University’s CTE Center announced last year that it had located CTE in all but one of 111 brains belonging to former NFLers. The findings sent shock waves around the continent and had some calling for a ban on youth football.
And yet dozens of papers published yearly in North American medical journals offer differing observations or call for more data before stoking fears that what has happened in the NFL can be extrapolated into the general population. Loyola University neuropsychologist Christopher Randolph, a CTE skeptic, wrote it was important to specify that BU’s 111 brains were “a sample of convenience, consisting of brains donated by family members who were concerned about pre-mortem behavioral and/or cognitive changes. Little attention has been paid to the fact that the majority of these brains contain evidence of known neurodegenerative disorders.” Randolph’s article was published in July under the title “CTE is not a real disease.” He has been roundly criticized for suggesting that.
The significance of the Zalapski discovery is that it underscores how large the divide remains between what we know about CTE and what we don’t. There are brain specialists who say there is no scientific correlation between concussions and tau and no scientific way to connect the CTE pattern of tau to clinical symptoms such as depression and suicide. It’s also uncertain how, or if, CTE is influenced by genetics, pre-existing conditions, environmental factors, drug and alcohol usage and mere aging.
Hazrati, who has performed autopsies on hundreds of brains in her career, has added to the debate with some curious discoveries. She found CTE in the brain of a man who never suffered a head injury and did not play contact sports, said to be the first known case of its kind. Conversely, she did not find CTE in the brain of John Forzani, the former Calgary Stampeders’ offensive lineman who played seven seasons in the CFL and suffered more than one concussion.
Hazrati has tried to allay worries that anyone who experiences a concussion is at risk of having CTE. In a paper she co-authored with Nicole Schwab, Hazrati noted that the “commonly cited case series studying CTE are limited by methodological biases, pathological inconsistencies, insufficient clinical data, and a reliance on inherently biased postmortem data.”
“This is not a black-and-white issue,” Hazrati says from her office at the Hospital for Sick Children in Toronto. “The tool – CTE – that I’m supposed to use to make a diagnosis of a disease is still not very evolved. We have much more work to do.”
Zarley Zalapski, born in Edmonton, was selected by the Pittsburgh Penguins with the No. 4 pick in the 1986 NHL draft. He built a reputation as a minute-muncher. At 6 foot 1 and 215 pounds, his fitness level and calm under pressure allowed him to eat up a lot of ice time most every night. He was a strong skater with a flair for jumping into the offensive play. As for fighting, he tried to avoid it for a simple reason – “you can’t score from the penalty box,” he told his family.
Zalapski scored 99 goals and recorded 285 assists in the NHL. He also played overseas for several seasons before retiring in 2010.
The defenceman’s problems became noticeable to his family during his playing years with the Flames, from 1993-94 to 1997-98. A non-drinker, non-smoker and non-drug user, Zalapski saw a number of holistic doctors in an effort to snap out of his doldrums. He had the amalgam fillings replaced in his teeth. He opened a health-food store and underwent vitamin therapy. He was diagnosed with chronic fatigue and had a number of food allergies.
“It was an evolution of things,” says Kyla, herself a former competitive athlete who owns and operates a Calgary fitness club. ”He wasn’t somebody you could ask, ‘Are you okay?’ It was very difficult to have that conversation with him.”
Well before Zarley’s death, Kyla was looking for information on athletes adjusting to retirement and how it plays on their mental health. One of the people she contacted was Merril Hoge, the former NFL running back and ESPN analyst who had retired from pro football because of too many head injuries. His last, in a 1994 game with the Chicago Bears, almost killed him. He was revived after his heart stopped beating for 10 seconds. Five years prior, Hoge was a Pittsburgh Steeler when Zalapski was a Pittsburgh Penguin. The two were part of a civic helmet-safety campaign and posed for photos.
“Kyla reached out to me because Zarley was struggling with his transition from hockey life to life’s work,” Hoge says. “In the interim, he passes. Well, because of this hysteria about CTE, right away people are going to think CTE killed him. CTE has never killed a soul. The paranoia of it, you can argue has.”
Dread and self-diagnosis have proved to be a dangerous combination. Several athletes, from the NFL to the NHL, have killed themselves suspecting they not only had CTE but were doomed because of it. Their deaths left families and friends asking heartfelt questions – why and how did it happen? Montador’s family is still planning to move ahead with a lawsuit against the NHL, claiming the league concealed information concerning concussions and their long-term effects.
In searching for answers to her brother’s death, Kyla Zalapski was told by Hoge she should talk with Dr. Peter Cummings. A neuropathologist and BU associate professor who earned his Master’s degree in pathology at Dalhousie University, Cummings is a strong advocate of saving kids from concussions and the possibility of head trauma. He went about protecting his 12-year-old son by not even allowing football to be shown on television for fear he’d want to play it.
His son was ultimately introduced to football via a video game and was determined to play for real. Cummings decided to do his homework. He was encouraged to see how rule changes – such as having as few as six players on the field per side instead of 11, limiting player contact and removing punts and kickoffs – had improved safety. He then read the science behind CTE and was perturbed at how incomplete the picture was.
“Nobody really knows much about it,” Cummings says. “To think we have CTE solved in a nice, wrapped little box in the space of four, five years doesn’t make any sense.”
Cummings, who now coaches youth football, is at odds with the way CTE is treated in the mainstream and social media. Given the speed at which today’s news travels, and the limitations of our attention span, “nobody has the time to go and read the actual [research] paper,” he points out. “This is where the information age, especially Twitter, can be a dangerous place. There is such a huge discrepancy between what the science is saying and what the headlines are saying that it terrifies me as a parent, doctor and coach.
“The worst part,” Cummings adds, “is anyone who dares speak out against this is labelled a ‘denier, a flat-worlder’ or worse. This is science, and science should always be questioned freely and openly. That’s not happening here.”
Kyla Zalapski insists she is neither pro- nor anti-CTE, nor is she in this pursuit for any financial gain. Her intent is to better separate fiction from fact so that the exact information can assist others.
“I feel I owe it to my brother and all the other people struggling to find answers to ask the right questions and to stand up even when my voice may be unpopular with some,” she says. “Zarley was a principled player and a principled man. He didn’t follow the crowd, he stood up for what he believed was right and he always sought the truth. I plan to take his lead and do the same.”