Ex-NHLer’s brain shows how much we don’t know about CTE

ZALAP­SKI, S5

The Globe and Mail (Prairie Edition) - - FRONT PAGE - AL­LAN MAKI

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 in- flam­ma­tion 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 and ex­am­ined. When the re­sults came back from neu­ropathol­o­gist Dr. Lil­iNaz 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 the age of 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 min­ute­mu­ncher. 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 fit-

ness 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.”

Zar­ley Zalap­ski, shown as a Cal­gary Flame in 1995, played 11 NHL sea­sons, scor­ing 99 goals and record­ing 285 as­sists. He played in Europe be­fore re­tir­ing in 2010.

TODD KOROL/THE GLOBE AND MAIL

Kyla Zalap­ski, shown in Cal­gary on Tues­day, says she owes it to her brother Zar­ley to seek the truth about CTE, whether peo­ple like the an­swers or not.

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