Epidemiologic Study Nowhere in Sight for Afflicted Players

By Matt Chaney

Posted Thursday, June 23, 2011 

This is Part 4 of an analysis series titled Brain Trauma Dictates Epic Football Reform, which will culminate with independent recommendations for steps imperative to the blood sport’s survival at public schools, colleges, and likely the professional level.

These days the NFL talks good game about addressing and managing brain injury in players, for its official feeds to pliant popular press. Meanwhile, the league’s historical, ongoing actions and low-profile rhetoric tell the subtle, same old truth.

The NFL still doesn’t want to know much about brain trauma and lasting damage, especially among living players, in real time.

League and union officials claim 17 years of research into cerebral trauma and degeneration, but questions of longstanding urgency remain unaddressed, particularly for risk and outcome in living players.

Information leading to or confirming system culpability for brain damage in individuals is somehow avoided, as always.

By the 1990s, NFL management and union had heard reports of emotional duress and cognitive impairment among retirees, including the case of full-blown dementia in former linebacker Dale Meinert, confined to a nursing home in his 50s. But no scientific evidence yet linked brain damage to tackle football, even at pro level.

Professional boxing was identified as culprit though. Medical literature tied that blood sport to cognitive decline in athletes since 1928, for repetitive head impacts, and thus cast suspicion upon tackle football, the modern, head-ramming pro game—including in view of some NFL doctors.

“Think about boxing,” Bills team physician Richard Weiss said in 1992, as Jets All-Pro receiver Al Toon retired following his ninth diagnosed concussion in eight NFL seasons. “Suffering a large number of concussions over a period of years more than likely leaves some permanent residue.”

The NFL established a concussion committee and research arm in 1994, and soon the issue took spotlight through head injuries of marquee talents Troy Aikman and Steve Young, among star quarterbacks sidelined by shattering hits.

The boxing analogy came up again, conjured this time by Dr. Joseph Waeckerle, a Chiefs physician who served on the NFL concussion committee. Chronic brain trauma “becomes cumulative,” Waeckerle said. “A great example would be a boxer. That may occur to other professional athletes who suffer many concussive syndromes.”

Independent researchers followed the boxing trail of brain damage right to pro football, cases of NFL retirees.

Esteemed neurologist Dr. Barry Jordan, authority on boxing trauma, co-authored a 2000 study that observed a minimum “two different mechanisms may contribute to the development of chronic cognitive dysfunction in [tackle] football players,” episodic concussion and thousands of asymptomatic traumas of lesser impacts over time. The report, published in Neurosurgery, continued:

“First, cognitive impairment secondary to concussion may be cumulative. Football players occasionally experience concussive events through typical contact sport collisions, i.e., head-to-head, head-to-body, head-to-ground, and head-to-goal post collisions. Second, football players may experience sub-concussive events through these same collisions during play and practice/training sessions. For professional boxers, CTBI [chronic traumatic brain injury] has been associated more strongly with career length than with the number of knockouts and concussions, suggesting that sub-concussive blows are an important primary environmental mechanism of neurological dysfunction.”

Another student of brain trauma, neuropathologist Dr. Bennet Omalu, had consumed the extensive library of CTBI cases in pro boxers, prepping him for a milestone football discovery in 2002: pathological evidence of brain damage in a deceased NFL player.

Omalu, a then-unknown deputy medical examiner in Pittsburgh, anticipated and found brain disease of repetitive impacts at cellular level during full autopsy of Steelers legend Mike Webster, a Hall of Fame center dead of cardiac arrest at age 50. Omalu named the football condition chronic traumatic encephalopathy, or CTE.

Omalu’s research group followed with more confirmations of CTE in deceased NFL players, as did a separate team at Boston University, under direction of neuropathologist Dr. Ann McKee.

By 2010 CTE was confirmed in more than a dozen NFL players examined postmortem by the Omalu and McKee teams, for case studies endorsed throughout medicine. Yet NFL loyalist experts doggedly disputed the evidence, as they had since the Omalu report on Webster published five years before.

Dr. Waeckerle of the NFL, who today serves on brain-injury committees for both the league and union, has labeled the CTE cases “anecdotal” and “marginally good” science.

Waeckerle, a renowned authority in emergency trauma who endured harsh criticism as brain researcher for the NFL—as co-author of discredited league studies involving controversial doctors Joseph Maroon, Elliot Pellman and Ira Casson—basically dismisses pathology of neural disease the vast majority of experts accept as convincingly linked to collision football.

Waeckerle instead promotes highly speculative theory for CTE in NFL players, like abuse of anabolic steroids or street drugs. He says a dire research question is whether some athletes are genetically predisposed for having their brains bashed-in by football contact. And he doesn’t point to CTBI in boxing anymore, for comparison to the NFL problem.

Waeckerle even had Webster under watch during the final season of the player’s 17-year pro career, 1990 with the Chiefs, when the battered lineman may have already begun cognitive decline, according to family members, doctors and other witnesses.

In a November profile of Waeckerle published by The Pitch weekly of Kansas City, writer David Martin reported: “Waeckerle isn’t ready to say football is killing guys like Mike Webster. Maybe it’s genetics. Maybe it’s steroids. Maybe it’s a combination of things. ‘We don’t know if there’s a cause and effect yet,’ he says. ‘We’re studying it.’ ”

Regarding cerebral risk and injury outcome of pro football, Waeckerle has estimated conclusions of NFL research are still a decade away, some possibly long as 30 years.

*       *       *       *       *       *       *

Nate Jackson is an ex-pro football player, dashing and single at 32, a talented writer with his first book contract—and he detects no cognitive alarms, thank you, after playing seven seasons in the vicious NFL.

Jackson feels fine mentally and physically, happy and enthused for a new craft and future beyond football. But he does contemplate the possibility of brain damage, like practically every peer of the contemporary NFL, players past and present.

“I don’t think about it too much. I try not to worry much about it,” said Jackson, former wide receiver and tight end, during a telephone interview. “I don’t think there’s much I can do about it at this point. I don’t think I was a head-banger for long enough, you know…” He paused, added, “But I don’t know. I don’t know.”

Lasting and typically progressive cognitive impairment is obvious in many NFL retirees and documented in several, ailments that begin for some as young as Jackson and spread wider through the older generations.

The mildest cases can be undetectable to lay people, but the known worst include an extraordinary three retirees with deadly ALS that manifested in their 30s, along with early onset dementia in men like John Mackey, Hall of Fame tight end diagnosed at 60.

Sylvia Mackey believes her husband’s condition is because of football, and she has seen the signs in his NFL peers. “Every year, he would go back to the Hall of Fame ceremony, and, every year that I went back, I noticed that more and more players—and these were Hall of Fame guys—had dementia,” she said on PBS NewsHour in 2009. “And I thought, there’s something wrong with this picture. It’s just too much of a common thread right here in this small group.” Sylvia Mackey estimated “plenty” of retired players suffer dementia.

Critics of autopsy-based NFL research contend large-scale epidemiological study of living players is urgently needed, valid random clinical trial conducted by a multidisciplinary team of experts and preferably free from influence by the likely funding sources of football. Large control groups must be assembled and quickly, among challenges, say observers such as epidemiologist Charles E. Yesalis, ScD, professor emeritus of Penn State University.

“There are four or five epidemiologic methods to apply the study to any disease state, prospective or retrospective,” said Yesalis, a foremost researcher of drug use by athletes. “It would obviously be good to have a top epidemiologist involved, and I don’t think I’m saying that in a self-serving manner because I’m retired and I have no interest in doing any work.”

“Part of the problem for investigators, other than your clinical study of acute effects, is you get into money need and who’s going to fund it?”

No party among the NFL, the NFLPA and NCAA has yet to support such ambitious, costly research while the government has expressed no interest, and other potential sponsors aren’t forthcoming at moment.

Smaller studies are underway, nevertheless, and findings and expert opinion increasingly suggest epidemic parameters for cognitive impairment in players of pro football, if not those of collegiate, school and youth levels.

The NFL sphere includes at least 13,000 to 16,000 living retirees, and surveys since the 1980s show excessive rates of diagnosis for depression and Alzheimer’s disease in the population. Medical evaluation of individuals and small groups finds brain disorders, and anecdotal information accumulates as dozens of retirees disclose experiences and concerns in public, such as during news interviews and testimony at congressional hearings.

Neuropsychologist Robert Stern, co-director of the Center for the Study of Traumatic Encephalopathy at Boston University, recently discussed the condition with NFL retirees in California. “It’s a progressive neurodegenerative disease,” Stern told them. “It’s a disease that gets started early in life and gets worse with repeated blows to the head.”

Stern’s presentation sobered former NFL linebacker Charles Anthony. “This was a real awakening and educational meeting that some of my friends probably should have come to,” Anthony told The San Mateo County Times.

With the recent necropsy results of former safety Dave Duerson, dead at 50 as one of several NFL suicides in recent years, Boston researchers have found CTE in 14 of 15 players examined postmortem. More than a hundred living players have pledged donation to this “NFL brain bank” and are participating in longitudinal cognitive assessment until death, but the hopeful study will require many years of building to ever produce meaningful data on scope and consequences of problem.

No epidemiological observations can be made of case studies limited by participant numbers and biases, for constituting a representative sample of the NFL population or any in football.

The NFL-funded Sports Legacy Institute at BU and its research rival Brain Injury Research Institute, of West Virginia University, both solicit brain donors and families without random selection while the player parties typically have their agenda.

“There’s a tremendous selection bias, so you can’t make any conclusions about the incidence or prevalence of disease,” Dr. McKee of BU and the SLI recently told The New York Times, discussing pathology for CTE to date.

“A family is much more likely to donate the brain of a loved one if they have even the smallest suspicion that something was wrong,” McKee said. “If they were perfectly confident that the [player was] functioning 100 percent normally, they’re less likely to go through the process.”

Regardless of paltry attempt at assessing risk and outcome thus far, authoritative consensus around tackle football—or common sense—sees brain trauma as widespread in the collision sport and irremovable, leaving lasting damage in countless players of multiple levels. McKee’s team has found early-stage CTE in two players who were 18 and 21 at their deaths.

“I am scared that [CTE] can be more common than we thought,” Stern said of the NFL, where he expects “many more” cases to emerge.

Dr. Omalu detects impairment signs in virtually every NFL retiree he encounters. “But what happens is that these players are usually ashamed to acknowledge that they are having problems, but when you interact with them, when you engage them, you would find out there is something going on,” Omalu said.

Dr. Daniel Amen, the popular psychiatrist and CEO of Amen Clinics, Inc., says every person is at risk, any age, upon merely participating in organized football with helmets and pads. During a PBS telecast of his show, The Amen Solution, the doctor declared that “if you played football, you probably have some sort of brain damage.”

Amen’s independent research group recently found high rates of impairment in 100 NFL players both active and retired, for its study based on SPECT imaging.

While some experts question efficacy of SPECT for brain analysis, the Boston group likewise employs the imaging in research, and Amen makes believers of retirees he diagnoses with radiology and treats with his supplements.

Count Terry Bradshaw as a faithful patient, the Hall of Fame quarterback and TV-film personality who spent a week at the Amen Clinic and follows the doctor’s prescriptions for brain therapy, like online puzzles and supplements.

Bradshaw made headlines by revealing his deteriorating cognitive condition in April. While a former star quarterbacking peer of Bradshaw is rumored to suffer disorder privately, the Steelers great and NFL analyst discussed his brain damage in a first-person post on the Fox Sports Website.

“Why did I go public?” Bradshaw wrote in his conversational style. “Well, I thought it would be good for a lot of players for this to get out, for me to tell my story because I was a quarterback. I know how much my late center Mike Webster suffered. I can only imagine what a lot of defensive players from my era are going through.”

Bradshaw frankly admitted a “horrible concentration problem for a while now” that affects him at work. “Toward the end of last season on the Fox pregame show, maybe the last six weeks, I really started to forget things.” Estimating number of his own head injuries as a player, Bradshaw recalled “numerous” that included six diagnosed concussions.

Working now at 62, Bradshaw’s memory loss makes him “jittery at times,” he attested. “It was driving me crazy [last season] that I couldn’t remember something that I studied the night before. All it did was trigger my anxiety and all of sudden everything would snowball on me. I know I have depression and it’s a horrible disease. This memory loss just made my depression worse.”

Openness about personal brain issues is a modern trend among former players, and many NFL retirees wield it against owners and union in the terrible dispute over disability and pension.

But former star linebacker Harry Carson went public in the mid-1990s, a few years after his diagnosis for “post-concussion syndrome” and as a lone wolf attacking the football culture. Even fellow retirees were skeptical, for their ignorance and denial of brain trauma caused by the sport.

“One problem is that a lot of players who suffer from it have no clue what they’re dealing with,” Carson told Sports Illustrated in 2001. “I’ve talked to players I’ve played with and against. Once I went public with this concussion thing, they were looking at me as being sort of brain-damaged, drooling and all this stuff. But it is an injury just like one to your knee or hip.”

Carson said then he suffered of severe headaches, inattentiveness, short-term memory loss and vision problems. He figured he sustained a minimum 15 concussions over his 13 seasons in the NFL, all with the Giants.

The year following this SI interview, Carson, a successful businessman, attended the funeral of a former foe he admired, Webster, and he further considered the possible depths for cerebral destruction in a football player. Later, Carson followed progression of the landmark lawsuit by Webster family members, who won retroactive payments plus interest from the Bert Bert/Pete Rozelle Retirement and Disability Plan.

Then Carson used his platform as Hall of Fame inductee to speak out at Canton in 2006. Beginning his unprepared enshrinement speech, Carson graciously remarked he could not appreciate the honor “until I get one or two things off of my chest.” Pointedly addressing league and union officials, Carson said, “You got to look out for [retirees]. If we made the league what it is, you have to take better care of your own.”

Carson has continued to learn about brain injury in football, and speak, write on his blog. The public honesty about his own problems has encouraged hundreds of former players to contact him, from all levels of the game.

“Every player who ever played football understands the physical risk that they take when they play,” Carson, 57, recently told The Bergen Record. “Now if you asked me a long time ago, knowing what I know now, I probably would analyze the physical risks and [still have] played. Now if you told me [then] what the neurological risks were? I probably would have to give you a much different answer.”

“I can see those who played the game prior to me and the issues they’re going through. And those are serious neurological issues like dementia, Alzheimer’s, ALS. I’m probably headed in that same direction.”

Amyotrophic lateral sclerosis, ALS or “Lou Gehrig’s Disease,” is on the worry radar of NFL players young and old. A 2010 study headed by McKee linked CTE with the motor neuron disease in deceased retirees and a boxer, and recent news heightens concern, reports that two former NFL players have been diagnosed with ALS, totaling three known cases among living retirees.

The Boston group’s report defines ALS as “a fatal progressive degeneration of motor neurons in the brain and spinal cord,” and researchers generally agree the disease manifests through nature and nurture, “a complex interaction between multiple genetic and environmental risk factors.”

For many researchers, the prime suspected impetus is a subject’s history of impacts to the head and spine, such as blows sustained in contact sports like tackle football and soccer. On review of literature, McKee et al stated that “trauma to the [central nervous system] emerges as one of the strongest and most consistent contenders for initiating the molecular cascades that result in ALS, as well as other neurodegenerative processes, such as Alzheimer disease and Parkinson disease.”

McKee found and associated CTE with the diagnosed ALS that killed two former NFL linebackers, Wally Hilgenberg, who died at 66, and Eric Scoggins, dead at 49. Examining the brains and spinal cords, McKee identified diffuse toxic tauopathy in distinct patterns and abnormal concentrations of the DNA-binding protein known as TDP-43, which could result of chemical cascades caused by repetitive blows.

The study was published in Journal of Neuropathology and Experimental Neurology, and McKee proposed her group had discovered a new syndrome they named chronic traumatic encephalomyelopathy, or CTEM.

McKee said, “The significance of this finding is that not all ALS-like disease attacks out of the blue—sometimes it’s because of our choices in life.” The Boston researchers suggested Lou Gehrig might have died of CTEM generated by multiple concussions he sustained in tackle football, as a youth and college player, rather than of ALS, his namesake disease.

The study was highlighted in popular press while garnering lukewarm response from some medical experts. Critics cited the small number of cases in the study and the method of autopsy analysis that limited understanding for early stages of neural degeneration in the subjects.

“The researchers are drawing inferences that may not be true,” Dr. Carmel Armon, neurology professor at Tufts University, told Neurology Today. Armon noted both CTE and ALS typically involve accumulation of TDP-43, but he was unconvinced that meant one condition leads to the other.

A high incidence of ALS diagnosis among NFL retirees is hardly disputed, however, even if experts may not agree on exact rate. Since the 1980s, five former pro football players are known to have died following diagnosis, including the historic cluster of three victims from the 1964 San Francisco 49ers: quarterback Bob Waters, running back Gary Lewis, and linebacker Matt Hazeltine.

Today, three NFL retirees live with ALS diagnosis: former running backs Steve Smith and Kevin Turner, ages 46 and 41, respectively, and a 33-year-old whose identity remains undisclosed.

“Playing NFL football was a dream come true,” Turner said last year, as he volunteered for research in Boston. “I just never thought in 20 years I would be fighting for my life.”

An NFL player is eight times more likely for ALS diagnosis than the average American, Boston researchers calculate. The disease often begins with motor loss of shoulders and arms before spreading to other muscle groups. In the end, speaking, swallowing and voluntary breathing become laborious then lost; Smith, for example, was diagnosed in 2002 and remains alive through a ventilator.

“ALS or CTEM may be the most difficult diseases in existence to watch,” McKee said. “They are slow, agonizing deteriorations that are witnessed helplessly by loved ones.”

All told, cognitive misfire strikes many if not most NFL retirees, and maddening mysteries will endure as questions rise for more players and families.

But sound expert assumption gains traction on good evidence, like threat of sub-concussive blows in football. Medical experts of multiple specialties increasingly concur that repetitive head impacts are most harmful, not concussions, and rationale follows that risk of brain damage rises in commiserate with a player’s exposures over time, especially on the line.

The concept unnerves many college players past and present, and it can haunt pro players and retirees, but it does provide direction amid brain trauma’s plethora of uncertainty.

*       *       *       *       *       *       *

Nate Jackson doesn’t feel clouded by cerebral impairment, but the budding author wonders what’s ahead because of his NFL past and entire football career.

Jackson made the Denver game roster in 2003 as an undrafted free agent from Menlo College, where he dominated Division III competition as a 6-foot-3 wide receiver. Early on the Broncos moved Jackson to tight end and he beefed up a few pounds to 235, yet about 30 short of good heft for the position.

Jackson battled for five seasons in the NFL trenches, taking on gigantic D-linemen and linebackers, drilling everybody with his facemask, and getting blasted in return. That period in pro football was Jackson’s most violent on the gridiron, obviously.

“As soon as I became a tight end, my whole football experience changed,” Jackson said. “Then it was all about, for me, sticking my head in there and banging away at these guys. It was kind of a normal experience to have [trauma symptoms like] a little headache or be a little woozy. And it was just something I dealt with, part of my reality.”

Jackson believes he had one concussion in the NFL, undiagnosed, and none in college or high school. He sustained thousands of sub-concussive or recurring blows, from youth to manhood, but many other players of the league are longer for heavy combat.

“I’m sure there’s a lot of guys out there, who did it for 15 or 20 years, who are probably experiencing [impairment] symptoms,” Jackson said. “But I don’t know how to quantify it. We don’t know enough. We’re all just kind of guinea pigs, this generation of football that gets more and more intense every year, with bigger, faster and stronger players every year. And so these impacts are more intense every year.”

“We’re probably not going to really know for another 20, 30, 40 years. I hope that I’m going to be OK. I think I will. I feel like I have all my wits about me. I don’t feel demented and I don’t feel depressed or anything like that. So I think I escaped without those symptoms.”

“But…,” Jackson added, “you never know.”

Experts concur that answers won’t be available anytime soon for living players like Jackson.

“There’s so many things that you could study, and chances are virtually none of them has been done,” said epidemiologist Yesalis, during a recent telephone interview. “One thing you could do is a prospective study. You could take NFL retirees versus people who did not play college or professional football, and look at the difference in incidence of disease states that may be the result of multiple concussions, or multiple chronic brain traumas.”

A similar study frame reportedly is underway at University of North Carolina, funded by the NFL, but control groups are small.

Legit epidemiologic studies are pricey and complicated, noted Yesalis, who co-directed the first national research of steroid use among teens. “Who’s going to pay for that study of NFL players or former players? Number one, it’s unlikely the NFL will. It’s unlikely the NCAA will.”

Yesalis says government funding for vital research is possible. “But keep in mind how protracted the process is for them—meaning the feds, who are trying to cut back expenditures because of the horrible financial situation of the country—to identify [football brain trauma] as a problem, to getting proposals submitted, to funding them, to doing the research and publishing it.”

“You’ve got a five-year time span there, at least.” 

Matt Chaney is a writer, editor, teacher and restaurant worker living in Missouri, USA. Email him at mattchaney@fourwallspublishing.com. For more information, including about his 2009 book, Spiral of Denial: Muscle Doping in American Football, visit the homepage at www.fourwallspublishing.com.

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