Wally Hilgenberg's family gave his brain for research in Boston. What they've learned has made them uneasy with a sport central to their lives.
Just days before his death in 2008, Wally Hilgenberg was lifted into a chair for one last family portrait. Daughter Kristi stood behind the former Vikings linebacker and held his head, so that it would not slump to the side. His two football-playing grandsons, Luke and Austin, flanked him on the front porch.
Through 16 seasons and four Super Bowls, Hilgenberg had played a vicious game with a devil-may-care attitude. On the last Christmas he was alive, confined to a wheelchair and slipping to a point where he could only communicate by blinking his eyes, he gave each of his four children one of his Super Bowl rings.
The preliminary diagnosis for his death at the age of 66 was Lou Gehrig's disease. But two years later, doctors in Boston, where Hilgenberg's brain was studied and still sits in storage, suggested something else: that Hilgenberg instead died from repetitive brain trauma brought on by more than 20 years of high school, college and pro football.
Now, his family, which owed so much to football, is deeply conflicted by it.
"Football is bad. It's really, really bad," said Eric Hilgenberg, who played football, as his father did, at the University of Iowa.
Wally Hilgenberg, a 6-foot-3, 230-pound star, was selected as one of the Vikings' 50 greatest players -- and today is the only one of the 50 who is dead.
The family -- all wearing Hilgenberg's No. 58 jersey -- gathered at the Metrodome shortly after he died as the team observed a moment of silence before a game. As they mark the fourth anniversary of his death this week, the pain and turmoil that have emerged from its cause is stark.
Hilgenberg's widow, Mary, rarely and reluctantly goes to watch her talented grandsons play high school football in Orono and Mahtomedi -- a move that has frustrated both high school seniors who have ambitions of playing in college.
Eric, the only son, refuses to let his own sons play football. One of Hilgenberg's daughters, Amy, lets her oldest son play, but vows to steer a younger, adopted son to another sport. Hilgenberg's oldest child, Angie, for two years hid the news from her mother that her own son had suffered a football concussion.
"Dad's still giving. He gave in life, and he continues to give in death," said Angie, who uses her father's memory to motivate her son, Austin, a starting linebacker at Orono High School. "I don't have the anger."
Two days after her husband died, Mary Hilgenberg's phone in Lakeville rang.
On the line was Chris Nowinski, the co-director of the Center for the Study of Traumatic Encephalopathy at Boston University. Nowinski had been prodded to call by Dr. Ann McKee, his co-director, when she read of Hilgenberg's death. Nowinski and McKee were looking for brains to study, and McKee was particularly interested in athletes such as Hilgenberg who had diagnoses of amyotrophic lateral sclerosis -- ALS, or Lou Gehrig's disease.
"Immediately, everyone said, 'Yes, let's send dad's brain to Boston,'" said Mary Hilgenberg.
In some ways, Mary was the perfect person for Nowinski and McKee to call. Her father, the late Dr. Clement Fox, had specialized in neuroanatomy at Marquette University and Wayne State University, and, starting in 1937, had helped publish dozens of studies. One, in 1944, was titled, "Structural alterations in the brain in and after experimental concussion[s]." A tribute at Fox's retirement in 1976 said that his "many papers on the organization and connections of the cerebellum and basal ganglia are, by common consent, among the most significant in their respective areas."
Mary recalled that "I grew up going to his office, and there'[d be] brains in jars all over," mostly the brains of monkeys.
When McKee learned of Fox's early work, she knew she had a chance. "People didn't understand what we were doing, and they thought it kind of morbid and horrible," said McKee, but Mary "immediately got it."
In 2010, McKee and a team of doctors used Hilgenberg's brain and others as a basis for "TDP-43 Proteinopathy and Motor Neuron Disease in Chronic Traumatic Encephalopathy," a 15-page study that claimed to provide the first pathological evidence that repetitive head trauma in collision sports might be linked to the onset of a motor neuron disease. McKee and her colleagues suggested, in simple terms, that Hilgenberg did not have ALS, but a new disease associated with repetitive brain trauma that mimicked ALS.
The study listed him as Case No. 1, and said two major teaching hospitals had mistakenly concluded ALS was the likely diagnosis.
The slides released as part of the study, showing Hilgenberg's brain sliced in cross sections, are still jarring -- Hilgenberg's is discolored along the edges, with large dark spots showing severe deposition of abnormal tau protein in the medial temporal lobes and neocortex.
With the increasing focus on brain injuries and the National Football League, McKee was featured on HBO and on CBS' "60 Minutes."
But the study was based on the brains and spinal cords of just 12 athletes -- Hilgenberg was one of three who developed a motor neuron disease late in life. The study was soon criticized for having too small a sample size to reach solid conclusions.
A rebuttal quickly appeared in the Journal of Neuropathology and Experimental Neurology, signed by 17 neuromuscular specialists, including doctors from Duke University and the Yale University School of Medicine. McKee and her colleagues, the doctors argued, proposed "a cascade of events" to support their findings, but that "we have concerns about the conclusions drawn from [just] three cases.
"Someday, if the work of McKee et al. can be confirmed in a much larger and better clinically characterized sample, another new subtype of ALS may be recognized," the doctors said. "Until then, implied accusations of misdiagnoses and speculation on new [subtypes] ... seem premature."
Other doctors took aim at McKee's assertion that Lou Gehrig, the baseball player whose name is often used to describe ALS, may have in fact suffered from a different disease. "These sweeping generalizations go way beyond the evidence presented," the doctors wrote in January 2011.
McKee and her associates, agreeing that more study was needed, responded by saying that "it is important to bring all perspective to the study of motor neuron disease and not to discard alternate hypotheses even if they are discordant with long-held opinions."
But the controversy McKee ignited was lasting. Dr. Raymond Sobel, the journal's editor, said in an e-mail last month that the research generated "a lot of response -- more than any other article since I've been the editor."
McKee is now working on a follow-up study, which she hopes to publish in the next year. It will feature research on nine additional brains including, for the first time, those of college athletes -- an addition McKee said "changes the game" by showing brain deterioration at an earlier level of play.
In addition, new research published this month by the Minneapolis-based American Academy of Neurology, seemed to give McKee a partial boost by saying that a study of 3,439 former NFL players showed they were more likely to die from Alzheimer's disease and ALS than the general population.
Hilgenberg's brain is still in Boston, stored at a brain bank in a nearby federal Veterans Affairs center. "It was such a beautiful specimen," said McKee. "We continue to pull it out" for study. "We'll keep it in perpetuity."
Leaving her kitchen, Mary Hilgenberg retrieved a stuffed bear that, when a button is pushed, speaks in her husband's voice. "Good night, sweetheart. I love you. Sweet dreams, and my heart is with you always," the familiar voice rang out.
"Isn't that neat to go to bed with?" said Mary, who tried to, but couldn't, hold back tears as she stood in her home in July. "That's him. I had it recorded. He gave [the bear] to me."
Although Mary Hilgenberg has followed the research, she did not go to see her husband's brain when she once, briefly, visited Boston.
She also has not kept the documents from her skirmish with the NFL, which she said initially declined to include ALS as part of its medical coverage plan. When she threatened to go to the New York Times, she said, the NFL called back and said it had changed its mind.
Phyllis Tingelhoff, whose husband, Mick, played with Hilgenberg as the Vikings' center, said she watched Mary Hilgenberg's feelings toward football change. "I can understand where she's coming from" now, she said. "I think she was like all of us [in the early days] -- appreciative of football.
"We were very blessed. Our husbands played," she added.
But Mary Hilgenberg is now at a different place. "You speak against football," she said, recently, "and it's like speaking against someone's religion."
Hilgenberg played 16 seasons, first for the Detroit Lions and then the Vikings, and took many hits. But for his wife, one always stood out.
On a rainy Sunday in January 1969, Hilgenberg lowered his head to tackle Dallas Cowboys tight end Pete Gent in the Playoff Bowl, a game Hilgenberg privately called the "Toilet Bowl." The game, since discontinued, was essentially meaningless, pitting runners-up that had lost playoff games. Just 22,961 fans were in Miami's Orange Bowl for the game. The legendary Super Bowl that would be won by Joe Namath's New York Jets was still a week away.
As Mary Hilgenberg watched from home -- Angie, their first child, was not yet 3 weeks old -- her husband hit Gent, crumpled to the ground and was knocked cold. Two teammates dragged him from the field so the Vikings would not be charged with a timeout. Later, Hilgenberg told his wife he had learned at a golf outing that the 6-4, 205-pound Gent had a plaster cast around his midsection, under his jersey.
Gent, who died last year, would gain fame as the author of "North Dallas Forty," one of the first books to probe the seamy side of professional football.
"I remember the doctor examined" Hilgenberg on the sidelines, said Fred Zamberletti, the Vikings' longtime trainer and historian. He even remembered Hilgenberg being helped from the field by Vikings safety Karl Kassulke. "He did get a concussion in that game."
Forty years later, HBO's "Real Sports" would feature the vicious hit as part of a segment on NFL players and repetitive brain trauma.
Hilgenberg embraced physical football and was remembered for being a ferocious hitter and a bit of a cheap-shot artist. Eric still can describe his father's "flipper" move -- a quick forearm to an opponent's head.
"Would he take a cheap shot? Yes, of course," said Roy Winston who, with Lonnie Warwick and Hilgenberg, were the linebackers on the Vikings' dominant teams of the early 1970s. "Wally couldn't resist, and most of the time he got away with it." Friends for life, Hilgenberg, Warwick and Winston -- No. 58, 59 and 60 -- sat at banquets in order of their jersey numbers. The trio even rode in a pickup truck in the same order on hunting trips.
Jeff Siemon replaced Warwick in 1972 and initially disliked Hilgenberg before becoming a close friend and speaking at his funeral. "He was brash. He was self-centered," Siemon said. "One-way Wally -- the one way was always his way, [a] hard liver, hard drinker."
Hilgenberg said during a 1974 interview that he "used to sit down and actually hate the guys I was playing against. I mean really psyche myself. Try to shred them mentally." He said he had matured, but he added that he still played "intimidating football. I'm like that. Is there anything wrong with it? I mean it's a battle, isn't it?"
Mary Hilgenberg once offered her grandson $2,000 -- half seriously -- to quit playing football.
That was directed at Luke, now a senior linebacker and co-captain at Mahtomedi High School. Mary generally does not go to her grandsons' games, and Amy Lindahl, Luke's mother, said that when she does, it is difficult. "I know she cried pretty much the whole day before she came" to one game, Amy said of her mother.
"I have gone to the games. I am very nervous there," said Mary.
Of Hilgenberg's children, Eric seems the most haunted by what happened.
He ended up with his father's ring from Super Bowl IX, a 16-6 loss to the Pittsburgh Steelers. Eric was a business partner with his father in a financial consulting company and is the trustee of his estate. He is also the lead plaintiff in the wrongful-death lawsuit he and his mother filed in February against the NFL in federal court in Philadelphia.
Eric and Mary maintain that Hilgenberg's death from repetitive head trauma, and not ALS, came because of the NFL's "substantial concealment" that many former players had shown similar symptoms. The Hilgenbergs claim the league's actions amounted to negligence, and the lawsuit is now part of many others filed by former players.
For Eric, the images of his father still focus on his physical decline. For years after Hilgenberg retired, Eric said, his father "still looked like a Greek god." But because he worked with his father, Eric said he was the first to notice the slippage. The signs were subtle at first, said his son -- his father began to lose his ability to grip items with his hands, and began eating more and more Snickers bars to fight a growing lack of energy. "I asked Mom, I said, 'Are you seeing things [too]?'" he said.
None of Hilgenberg's three daughters -- Angie, Amy nor Kristi -- is listed as a plaintiff in the Hilgenbergs' lawsuit. "I'm just kind of removed from it," Angie explained. "There are really no hard feelings, and there is no strife in our family."
Even Eric declined to discuss the lawsuit, saying only that "I don't really want to comment."
But Eric, 39, who has three small boys, is more forceful in saying that "my children will never play football," even though, he admitted "you see at a young age, they're fast, they're quick, they're aggressive." Eric also said he has not been shy of telling Angie's son, Austin, and also Amy's son of the dangers of playing high school football. "I told [them] it's not worth it," he said.
Angie acknowledges there are risks, but she said her brother has yet to come face to face with the decisions she had to make -- Eric's boys are home schooled and still too young. "He's home schooling. There's a little more control in the household," Angie said. "There's not that peer pressure of 'I want to be a football player' [for] the time being.
"My sister [Amy] and I both have high school seniors and understand the camaraderie, the leadership -- everything that goes into it," she said.
Besides, Angie added, Wally Hilgenberg's story is an inspiration to Austin. Luke, too, has a notebook from his grandfather inscribed with the words, "Be a Warrior for Christ -- Both on and off the football field! Love, Grandpa."
The youngest daughter, Kristi, was born in 1979 -- her father's last year in the NFL -- and seems conflicted in a different way. Her son, Hootie, one of two boys, is 7 and she said she and her husband have not discussed his playing football. They declined to discuss football, the family or her father further. "Right now," she said of her boys, "they're just into playing at the house."
Mary Hilgenberg said she respects the decisions her children have made. But she added: "I'm proud of Eric for his stand" against football.
Four days before he died, Hilgenberg sat along the sideline at Woodbury's New Life Academy in a wheelchair. He had come to see Luke, then an eighth-grader, play.
"We got word on the bench that his grandpa was going to have to go," said Paul Mork, New Life's head coach. The family asked, "Could, possibly, Luke go over and say goodbye?"
Mork pulled Luke Lindahl from the game, and the image of grandson and dying grandfather was captured in a family photo. Luke, wearing No. 25 in green and gold, is seen touching his grandfather's shoulder.
"We thought that he was going to make it through the whole game," Luke's mother said of her father. "Shortly after halftime, he just couldn't do it anymore."
Often, when Luke talked to his grandfather, it was not about football. But, said Luke, it was "brought up almost every time. [He'd ask], 'How's football going?'"
Mork, in his 54th year of coaching, is old enough to recall Hilgenberg's playing days. "He was just such a hunter," he said.
Turning to Luke, Mork added: "If he gets a chance at [Division I college football], don't bet against him."
Austin and Luke play high school football on artificial turf, 30 miles apart. Fittingly, like their grandfather, both are linebackers. Both are 6 feet tall, but Luke, at 215 pounds, is 10 pounds heavier and wears his blond hair long, mimicking the popular look of Green Bay Packers star Clay Matthews.
"We're really competitive, me and him [Luke]," said Austin, who keeps in touch with his cousin.
Austin has watched his grandfather on tape, and has liked what he has seen. "He was a crazy guy," said Austin, who said his grandfather used to tell him "about his cheap shots." Some of Austin's friends even call him "Hilgy" -- the nickname Wally Hilgenberg had. "It helps me connect with him," he said.
Although Austin had a concussion playing football as a sophomore, Michelle Zenz, the team's trainer, said he "hasn't expressed concern about it to me" regarding what his grandfather went through. She added: "He's a fun kid."
The thought, however, is on his mind. "It definitely scares me," Austin said of concussions, "but I don't like to live my life in fear."
Like Luke, who has hopes of playing at the University of Iowa, where his grandfather played, Austin has his own hopes of playing college football, though probably at a Division III level. His high school coach in Orono, Jeff Weiland, said that Austin, in order to get a major college scholarship, would need to be 6-2, 225 pounds, and "run like a deer."
"He's quick, but not that kind of speed," he said.
In a weight room at Mahtomedi High School, where Luke and his teammates puffed their way through an early August workout, the concussion talk was casual. "I've had two, three," said Dominic Scharrer, a 223-pound senior offensive lineman. "If I get a concussion this year in football, I'm definitely going to think twice about" continuing to play.
Dave Muetzel, Mahtomedi's sixth-year head coach, sat on the sidelines after one practice, recalling when he first heard that Luke's grandmother rarely comes to his games. "My heart dropped," he said. "That, to me, hit home."
"She lost her husband to this game," Muetzel then added. "I completely understand it."
Sitting in the dining room of their Washington County home in August, mother, father and son discussed what would happen if Luke had a major concussion. Two-a-day football practices were around the corner, as was a senior year in high school and, maybe, a college scholarship offer.
The room was quiet, and the words were measured. First up was Luke's father, Mike, a dentist who recalled that father-in-law Wally Hilgenberg could be "quite intimidating."
"If Luke had a concussion or a head injury, that might be the end of his career at football, and he knows it, too," said the father, who added that he had two concussions growing up, including one from football. "But, at the same time, you can't live in a padded room."
Next came Luke's mother, who has already decided that 4-year-old Ezekiel, an adopted son, will not be playing football. "I don't know if a mom can take too much more," she said. "Zeke won't be raised with football that way -- I don't think."
And if Luke has a concussion?
"In my mind, I personally have thought one concussion and we're done," she said. She then quickly added: "I shouldn't say it that [way] totally.
"Is that bad?" she said, quickly turning to Luke.
Luke, motionless, looked at his mother. "No, I'm just listening," he replied.
But then he offered his own answer. "It would make all of the other parties in the situation more nervous about it, but it doesn't really change anything for me," he said. "It doesn't change, like, how much I want to play the game."
Mike Kaszuba • 612-673-4388
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