Joe DeLamielleure Wants to Live
But will his brain let him?
Joe DeLamielleure remembers. He remembers people and places and events. That might be a small thing for almost everybody else but not for him, because a lot of his friends don’t remember. So it is a good sign that the first thing he does when he walks into a familiar pub in Huntersville, his broad shoulders filling the doorway, is say hello to the faces he recognizes, friends he knows. He stops to chat with them for a minute before joining me. He sits down and smiles with his whole face, his bright teeth shining from behind sun-worn skin. Prescription sunglasses with Nike emblems hang off his neck. He has a thick chest, meaty hands, thinning hair, and brain damage.
People around us eat. We talk about his brain and the damage done when it repeatedly bashed into the inside of his skull during his football career. From high school to college to 13 years in the NFL, he endured thousands of sub-concussive hits, plus who knows how many concussions. Now, the south Charlotte resident and Pro Football Hall of Famer is one of nine people on the planet who has undergone a controversial new test and been told he has chronic traumatic encephalopathy—CTE.
Sitting in the booth at Killingtons Restaurant and Pub, he talks about the 54 brains of former football players being examined under microscopes by the same doctors who believe he has CTE. Some of the people who owned those brains suffered from the same symptoms DeLamielleure has struggled with—depression, mood swings, memory loss, and sleeplessness. His brain shows evidence of the same trauma they had. Yet their brains are there, sliced into pieces thin and translucent as wax paper, and he is here, whole and healthy, and nobody knows why.
Several former players with CTE have killed themselves. More have been diagnosed with depression, dementia, and Alzheimer’s disease, sparking a national debate about the safety of football. DeLamielleure has emerged as a frequent and vociferous critic of the NFL and its players’ union.
He is one of more than 4,500 former players suing the NFL, accusing the league of hiding the long-term effects of head injuries from players. The two sides agreed to a $765 million settlement last year—in which the NFL admits no wrongdoing—but a judge rejected the agreement, saying she feared it won’t be enough money.
Regardless of the outcome of the lawsuit, the future of the sport is at stake. For much of his life, DeLamielleure loved football so much that he refers to it as an addiction. He knew it was a rough sport, but like many players from his era didn’t understand the risks associated with all those hits. Now, he says if he had a chance to start his football career over again he wouldn’t. He does not want his grandchildren to play the game.
DeLamielleure’s symptoms are relatively minor. By comparison, Tony Dorsett, a fellow Hall of Famer who took the CTE test with DeLamielleure, told reporters he repeatedly forgot where he was going during his flight to Los Angeles for the UCLA examination.
But with CTE, it seems, everybody’s symptoms start out minor.
Will DeLamielleure’s symptoms stay small?
Or will he fall apart?
Maybe he’ll lose his mind.
Maybe he won’t.
DeLamielleure spent a good chunk of the last decade wondering if he was going crazy. Depression gripped him suddenly. Then it would let go just as quickly. His keys disappeared for hours because he couldn’t remember where he put them. Worst of all, he couldn’t sleep at night.
For years, he lay awake, staring at his bedroom ceiling in his house near the Arboretum. He thought about his friend, the late Mike Webster, another Hall of Fame offensive lineman crushed by blows to the head, and how Webster used a Taser gun to knock himself out so he could sleep.
He thought about Junior Seau, the former San Diego Chargers linebacker who killed himself in 2012. He and Seau had mutual friends who told DeLamielleure that Seau seemed fine one day and then shot himself in the chest the next. DeLamielleure related to that—normal one minute, terrible the next—and knew the frustration of having no explanation for the change. “In the dark of the night, you think of things that not even your family or your wife know that you think about,” DeLamielleure says. “That was me. It’s something you don’t tell people. Then they’re scared.”
The nights dragged on; darkness in, darkness out. He tossed and turned. He climbed out of bed. He climbed back in. He couldn’t sleep because he couldn’t stop thinking, and he couldn’t stop thinking because he couldn’t sleep. “Am I going out of my mind? Do I have this CTE crap? What the heck is wrong with me? Why am I like this?”
When doctors began looking for volunteers last year to take a test they had developed in an attempt to identify CTE in living patients—if proven valid, it would be a major development—DeLamielleure thought he might finally get answers to those questions.
Last September, he flew from his home in Charlotte to UCLA. Doctors injected about a tablespoon of a chemical marker called FDDNP into his arm and then slid him into a tube for a PET scan. For 45 minutes, the FDDNP circulated through his body, carried along in his blood. His brain helped in its own diagnosis, in a sense drawing the FDDNP to itself. His brain told his heart to pump, which sent the FDDNP on a trip through his circulatory system and eventually to his brain. While that was happening, a three-way game of hide and seek took place inside his head, as the FDDNP “looked for” tau proteins, the calling card of CTE. The FDDNP “stuck to” the tau proteins when it found them. Meanwhile, the PET scan shot radiation into his head, looking for FDDNP-stuck-to-tau like a black light looks for fluorescent ink.
A few weeks later, DeLamielleure was sitting with his wife, Gerri, in their three-bedroom ranch home when the results came back. They were not surprised: The FDDNP had found a lot of tau. He tested positive for CTE, three on a scale of four, with four being worst.
The prognosis? Unknown but probably bad. Long-term quality of life? Unknown but probably bad. Chances of being healed? Unknown but probably low.
For years, DeLamielleure had wondered whether he was losing his mind.
The CTE test suggested the answer might be yes.
The terrible news gave him great relief.
I first met DeLamielleure two years ago when I interviewed him for a series of stories I wrote about concussions and retired NFL players for Sporting News. Given his memory issues and the fact that CTE is a progressive disease, I wondered whether he would remember me when I called him this time. He did, and he even recalled details of our conversations.
He asked me to meet him at Killingtons because it is across the parking lot from Gracie’s Hope Hyperbarics, where he undergoes oxygen-therapy treatment in a hyperbaric chamber, along with two military veterans with similar issues.
That day, he had a 90-minute morning session. After that, he drove home, cut the grass to beat a rainstorm, drove back to meet me, and then underwent a 90-minute afternoon session. He is bruised but not broken, ready to face the future even if it’s uncertain, eager to fight this disease. He doesn’t know if he can beat it. But at least he now knows his opponent, even if it’s one doctors don’t understand and don’t know how to beat.
A lifetime of being an athlete imbued DeLamielleure with uncommon discipline. He works out every day and remains in great physical condition. He doesn’t drink or smoke. Those lifestyle choices, he knows, could help keep him healthy longer—or they could make no difference whatsoever.
DeLamielleure immediately adopted the doctors’ instructions after the test results came back. He eats a more healthy diet than he did before, takes supplements, and rests on a magnetic mat for eight minutes before going to bed—his wife calls it the “magic mat” because of how much it helps him sleep. Also, he just finished 40 sessions in the hyperbaric chamber. But his doctors can’t promise that will help any more than they can explain why he is relatively fine when the apparent presence of so much tau says he shouldn’t be.
This is dangerous territory, but he seems better than he did two years ago. His mood appears lighter and his thoughts crisper. I tell him this, and he pulls out his phone and calls a friend, Clarence Carlos, who recently told him the same thing. He hands me his phone. “His pronunciation is better. He mumbled before,” says Carlos, co-founder of MedLogic, a Pittsburgh-based company that markets a device that detects bleeding in the skull. “I love Joe to death, but he would stumble over his words.”
As DeLamielleure describes his apparent improvement, his phone rings. It’s Gerri. He tells her what we’re talking about, and she tells him to tell me about reading and sleeping. “Oh, yeah, I forgot about those,” he says.
DeLamielleure used to be a voracious reader. When his symptoms started, he stopped almost entirely. Now, he’s reading again. He watches movies from beginning to end—for years he would lose track of the plot, get frustrated, and stop watching.
He also is easier to get along with. Far too often, he was swinging from normal one minute to terrible the next. He sat at home and stewed, “just ticked off at everything,” he says. In particular, he was angry that his wife had to work in order to provide him health insurance. “When she would come home from work, that’s when I’d be the most frustrated,” he says. “She should be working if she wants to, not because she has to.”
When Gerri got home, she could quickly tell what kind of night it would be. “I used to think, ‘Oh, who am I going to come home to? Is it going to be Angry Joe? Is it going to be Happy Joe?’ ” Gerri says. “That’s changed a lot. I think his frame of mind is better. I think he feels better in general.”
And he’s sleeping through the night, which they both say is the most important improvement, and perhaps even a cause of the other improvements.
Gerri first noticed the changes late last year and says in the past few months the improvement accelerated. Still, she’s cautious. “I don’t want to say I’m hopeful. I’m not discouraged. And I’m not encouraged,” Gerri says. “I’m just trying to stay steady. Trying to stay steady, functional, and relatively happy.”
Gerri and Joe grew up in Center Line, Michigan, a blue-collar suburb of Detroit. He was the ninth of 10 kids and worked at the bar his dad owned across the street from a General Motors facility. Gerri grew up around the block from his home. If another house hadn’t been in the way, he would have been able to see hers from the porch. They each say separately that they can’t remember not knowing each other.
Joe is 63, Gerri is 62, and during the early parts of their 42-year marriage, they lived a football life—moving from East Lansing, where Joe starred at Michigan State, to Buffalo to Cleveland and back to Buffalo in the NFL. They raised six children, two of whom were adopted from South Korean parents. They have 11 grandchildren. They knew they wanted to live somewhere new after Joe’s retirement, and one day Joe asked former Browns teammate Calvin Hill where he’d live if he could go anywhere. Hill said he’d pick either the Carolinas or Austin, Texas. Joe and Gerri decided Texas was too far away. And they’ve loved it here ever since.
Many of Joe’s friends are former players, and their wives are Gerri’s friends. They were especially close to Webster, who played center for the Pittsburgh Steelers while DeLamielleure played guard for the Bills and Browns. Webster and DeLamielleure turned their trips to the Pro Bowl in Hawaii into vacations. After they retired from football—DeLamielleure following the 1985 season and Webster after the 1990 season—they remained close until Webster’s behavior became erratic, and their once-frequent contact tapered off.
After Webster’s death of a heart attack in 2002, the DeLamielleures learned how much he struggled with depression and dementia. Webster was divorced and briefly homeless, living out of a pickup truck. After his death, his family won a lawsuit against the NFL for disability benefits, and DeLamielleure was furious—and remains so—that both the players’ union and the league had fought against Webster.
In 2007, Jim Ringo, a Hall of Famer who coached and befriended DeLamielleure in Buffalo, died. He was 75 and had battled Alzheimer’s for 11 years. Former players Terry Long, Andre Waters, Ray Easterling, and Dave Duerson all committed suicide, deaths believed to be related at least in part to head injuries. DeLamielleure’s playing career overlapped theirs.
As controversy over those deaths mounted, the DeLamielleures traveled to Canton, Ohio, for Hall of Fame ceremonies. Each year, they watched as other players disintegrated. One year a player would be fine; the next he would need help walking. Then, he would need help knowing where to go. And then he’d be gone.
“There was a day when Mike Webster was fine. There was a day when Jim Ringo was fine. Junior Seau was fine,” Gerri says. “They reach a point in their life where there’s no other thing to do than to shoot themselves, or whatever.”
It was hard not to think, Is Joe next? And harder to answer. Doctors don’t know if the CTE test even proves any-thing. Though DeLamielleure doesn’t doubt the results, the test has been administered only nine times, hardly enough to draw definitive conclusions. Doctors don’t know why some people with a history of concussions exhibit symptoms at young ages while others live normal lives. They don’t know why symptoms come and go. They don’t know what, if anything, will fix those damaged brains. And it will likely be years before they find out, if they ever do.
But DeLamielleure doesn’t have time to wait for the medicine to catch up. He worries about becoming a burden to Gerri as his friends have become burdens to their wives. Most of DeLamielleure’s frustration—with CTE, with the NFL, with his uncertain future—circles back to worries about her.
NFL players who retired before 1993 didn’t get any health coverage after retirement, a topic DeLamielleure returns to repeatedly. Gerri has to work (she’s a nurse) for him to have insurance. That infuriates him—so much that some people who know him have told him he’s not depressed; he’s pissed. He believes the league should also provide insurance for older retirees and a better pension, and if they did both, he’d stop railing on the NFL so much. He knows neither will happen.
When Gerri finally retires in a few years, she worries that she’ll be living with a man who doesn’t know her name anymore.
For now, the DeLamielleures keep hoping that their long history together—nearly all of their memories are shared—will help. If nothing else, if Joe can’t remember something, Gerri can.
“You know what I pray for?” he says. “To get killed in a wrongful death suit so my wife can get some money. Walk out and have a truck hit me or something. I would never take my own life. But I wouldn’t mind if I checked out early so she can have a good life while she’s still young.”
DeLamielleure pulls his big frame out of the booth at Killingtons. He walks across the parking lot to Gracie’s Hope Hyperbarics, disappears into a back room, and reappears wearing a T-shirt and pajama bottoms—only cotton is allowed inside the chamber. He sits down as an attendant takes his blood pressure. DeLamielleure expects it will be high; simply walking into Gracie’s Hope, one of the few facilities in the country that has hyperbaric chambers outside of hospitals, excites him.
It’s a simple treatment: Crawl inside the tube, lie down, and breathe. The chamber delivers 100 percent oxygen in a controlled, enclosed environment. The resulting increase in oxygen in the blood helps the body heal and fights off infection. Just as the FDDNP “looks for” tau, the oxygen “looks for” cells that need to be fixed.
Gracie’s Hope was founded by Brian and Shannon Pridmore. The nonprofit is named after their daughter, who was diagnosed with pervasive developmental disorder and, at 3, was unable to sit or crawl. Then, in 2005, Gracie started sessions in a hyperbaric chamber, two rounds of 40 visits. During the first round, she crawled and slept through the night.
During the second round, she walked. The Pridmores’ insurance did not cover the treatment, though, so they started Gracie’s Hope in 2006 to help others who might not be able to afford it.
There are conflicting reports about whether sessions in a hyperbaric chamber are effective for people with head injuries. DeLamielleure, though, considers himself and the things he has witnessed proof the chamber sessions work. He tells a story about the time he saw a father watch his little boy with a head injury undergo treatment. For an hour and a half, the dad sat outside the chamber, the boy inside. DeLamielleure watched as hope filled the room, as if father and son were both receiving treatment. “It was amazing. You’re just blown away,” he says. “The guy is standing out there for 90 minutes, and when the kid gets out, he’s so excited.”
DeLamielleure can’t conjure that kind of hope for himself. But he can conjure it for other people—for guys he played with, for military veterans with head injuries, for children like that boy. “What I want to do is just make a difference,” he says.
He goes to Catholic mass nearly every day at St. Matthew in south Charlotte, and he asks God to use him in the fight against CTE. He wants to fly back to UCLA to get tested again. He envisions himself in a role like Magic Johnson, after the NBA legend announced he had HIV.
“That was his death sentence,” DeLamielleure says. Yet 23 years later, Johnson is alive and well, proof that there is life after a devastating diagnosis. Ex-football players see CTE as a precursor to incoherence. But what if that isn’t the only outcome? What if he gets tested again and the FDDNP doesn’t find as much tau? “What if it cleared up 50 percent of it?” he asks. “What if it cleared up 100 percent of it?”
He lets those questions hang there. He looks like he’s imagining the answer.
He wants to grow old with Gerri, just as he grew up with her.
What if the second test shows no change? I ask him.
He shrugs. He knows his improvement might be just false hope. But he’ll keep doing what he’s doing because he feels better. Maybe this tube in Huntersville is helping to undo the damage that the tube at UCLA revealed. Maybe the damage will remain but the symptoms will continue to subside. Maybe it’ll be a combination of those two things. Maybe it’ll be none of those things.
Who knows? But he has to try.
He climbs in the tube, closes the door, and takes a deep breath.
Update: The former players and the NFL filed a revised settlement in court on June 25 that removed a cap on damages, but it has not been approved.