CHARLOTTE, N.C. -- Joe DeLamielleure has been a persistent and long-time participant in the discussion about how the NFL treats its retired players.
But since being diagnosed last fall with signs of a degenerative brain disease known as chronic traumatic encephalopathy, or CTE, DeLamielleure's voice has taken a different, even more urgent tone.
DeLamielleure, a Charlotte resident who was inducted into the Pro Football Hall of Fame in 2003, faces a future of dealing with the disease with health insurance he receives only through his wife Gerri's work medical plan. The NFL doesn't provide health care to players starting five years after they have retired.
DeLamielleure has never thought that was fair, especially now that he has become one of the first living NFL players to be diagnosed with signs of CTE. DeLamielleure, along with former Dallas Cowboys running back Tony Dorsett, New York Giants linebacker Leonard Marshall and Miami Dolphins receiver Mark Duper were tested and diagnosed at UCLA last September.
"I was injured in the workplace," said DeLamielleure, 62. "My wife doesn't need to be working for my medical (insurance). The NFL can fix that in a minute."
CTE, which is incurable and progressive, has been discovered during autopsies of more than 50 former NFL players, including Junior Seau, Dave Duerson, John Mackey and Mike Webster.
While the test used on DeLamielleure at UCLA -- a PET scan to detect abnormal brain buildup of a protein called tau -- has shown promise as a method to detect CTE in living ex-players, some experts caution that it is not yet completely proven.
"This is a very complex issue, because, No. 1, we don't truly know what many of the tests might mean," Robert Stern, a scientist with Boston University's Center for the Study of Traumatic Encephalopathy, told the Associated Press. "No. 2, this is a very vulnerable group of people who are scared to death about seeing their brothers have such significant cognitive and behavioral mood changes."
That didn't deter DeLamielleure.
"I wanted to be the first where it was discovered in living guys," DeLamielleure said. "I want to know what's going on."
'WE DIDN'T KNOW ... ABOUT CONCUSSIONS'
DeLamielleure had a 13-year career with the Buffalo Bills and Cleveland Browns and played in 185 consecutive games -- on offense and special teams. He was a key member of the Bills' "Electric Company" offensive line that opened holes for O.J. Simpson before retiring in 1985 (he played for one season with the Arena Football League's Charlotte Rage in 1992).
"I never came out (of games)," he said. "People asked why. I told them it was fun. We didn't know anything about concussions."
DeLamielleure said he was never diagnosed with a concussion during his playing days, but figures he endured tens of thousands of blows to the head. He said he has 68 percent hearing loss in his left ear from repeated head slaps from defensive linemen.
DeLamielleure has stayed fit since he retired and said he remains four pounds below his playing weight of 258. He works out in a fully equipped weight room in the backyard of his south Charlotte home and walks regularly with Gerri, a pediatric nurse.
He owns a fitness and exercise business in Charlotte called Joe D Bands, gives motivational speeches and is a consultant for a casino in Buffalo, N.Y.
The father of six -- two adopted from Korean parents -- and with 10 grandchildren, DeLamielleure helps raise money for an orphanage in Mexico. He walked 213 miles from Buffalo to Canton, Ohio, site of the Pro Football Hall Of Fame, last year to raise money and awareness for children with prosthetics.
"I've taken care of myself and have stayed busy and active since I quit playing," DeLamielleure said. "That may have delayed (the onset of CTE)."
DeLamielleure said he had been having CTE symptoms of depression, insomnia, mood swings and short attention span for years.
He was once a voracious reader, going through one book a week during his playing days.
"Then it got to where I couldn't pick up the sports page in the newspaper, where it said a story was continued on page seven," he said. "If that happened, I was screwed. I couldn't read any more."
DeLamielleure said he was relieved when doctors told him he had CTE.
"I would have been more shocked if I didn't have it," said DeLamielleure. "I knew something was going on there."
Doctors could not give DeLamielleure a prognosis for the disease. DeLamielleure is on a dietary protocol that includes natural ingredients such as green tea extract, grape seeds, flaxseed oil and Vitamin C.
"He's pretty high functioning," Gerri said. "All the doctors were wondering why. But he doesn't drink, he never took steroids."
A CONSTANT DISCUSSION
DeLamielleure has spoken out against the NFL and its player union for years, criticizing them for what he and others say is an inadequate pension program and failing to provide adequate health care for retired players.
His dialogue with the NFL Players Association has often been acrimonious. Former union president Gene Upshaw, who died in 2008, told the Philadelphia Daily News in 2007: "A guy like DeLamielleure says the things he said about me, you think I'm going to invite him to dinner? No. I'm going to break his ... damn neck."
DeLamielleure said at the time he took Upshaw's threat seriously.
DeLamielleure returns to Canton every August for Hall of Fame activities. Concussions are a topic of constant conversation.
"All the guys from my era are saying, 'Man, I know I've got it,' " DeLamielleure said. "It's almost humorous, how often it comes up. But here's how it is: one year a guy is there screwing around and having fun, the next year his wife is following him around taking care of him, the next year he's dead."
DeLamielleure said it's morally wrong that the league doesn't provide health care for its older players.
"I know some fans think we're all millionaires who should have known about head injuries when we played," said DeLamielleure, who receives a pension of about $2,800 (pre-tax) per month. "That we knew we'd get hurt and now we just want money.
"If that's so, then why does my wife have to work for my health benefits? Nobody is saying we want a $100,000 pension -- although that would be nice. We'd just like some health insurance."
A group of more than 4,500 former players recently sued the league for concealing the long-term dangers of concussions. The NFL agreed to pay the players $765 million, although a federal judge who must first approve the settlement has said the amount is probably too small.
"It's not enough money, not even close," DeLamielleure said. "Just like the judge said."
DeLameilleure said he's read two books since Christmas -- "E Squared: Nine Do-It-Yourself Energy Experiments" and "Anticancer: A New Way Of Life."
"I'm healthy now, but I think my wife and I have earned the right to have a vacation," DeLameilleure said. "I might be a basket case in a year. But forget about me and the guys: it's the families who suffer.
"I'm not trying to be a jerk about this. I'm not going to beg anybody. But the NFL was built on our backs. They need to help the guys who made the league what it is today."
(c)2014 The Charlotte Observer (Charlotte, N.C.)
Visit The Charlotte Observer (Charlotte, N.C.) at www.charlotteobserver.com
Distributed by MCT Information Services