Kevin Turner, 45, played eight seasons at fullback with the New England Patriots and Philadelphia Eagles. After being diagnosed with ALS in 2010, Turner has brought awareness to concussion-related issues in football as he continues to fight an incurable disease. (McKenna Ewen/The Washington Post)

People see Raymond Turner, spot the familiar name on his T-shirt and immediately want to know how his son’s doing. Raymond rarely has a quick answer.

“It’s hard to say. What do you say?” the proud father says.

Being around Kevin Turner on a daily basis, the changes can seem gradual. His body and the control he exerts over his body deteriorate bit by bit, an ice cube slowly melting. He was once a star football player at Alabama before embarking on an eight-year NFL career. Suddenly, for his family and friends, all the things they’d read about in the days and weeks that followed his ALS diagnosis four years ago, it all kind of snuck up on them. How’s Kevin Turner doing? Well, exactly how everyone expected. Which is the worst part of this whole thing.

“He’s not doing better, per se, because he’s fighting an incurable disease,” Raymond says.

Amyotrophic lateral sclerosis — also known as Lou Gehrig’s disease — is a degenerative disorder that cripples the nerve cells in the brain and spinal cord. Turner has been open with his battle in recent years. He lent his face and voice to the massive concussion litigation filed by retired players against the NFL, serving as one of the lead plaintiffs. He was featured in a documentary that shined a light on damage wrought by football’s hits, which he thinks resulted in his condition. He launched a foundation to help raise ALS awareness.

Last month, though, Turner was noticeably absent from the U.S. District Courthouse in Philadelphia, where a judge presided over the lawsuit’s most recent hearing to consider a settlement proposal. Turner’s health has taken a sharp, distressing turn and the past several weeks, he and his family have focused on trying to find comfort somewhere amid the wreckage.

Even though doctors scripted all this long ago, it doesn’t make it any easier.

“You kind of have to get in the mind-set of, ‘We’re here,’ ” said Craig Sanderson, Turner’s close friend. “We’ve been knowing this is coming, and I guess in some ways we’ve been preparing.”

Turner’s mind is sound — his humor, personality, charm all still there. But the disease has devastated the facade. When his nurse removes his shirt, Turner’s bones are outlined against his skin, the once-powerful muscles of an NFL fullback surrendered to atrophy. He receives oxygen through a port in his neck and nutrition through a tube to his stomach.

Turner, 45, spends most of the day in bed. Family and friends mostly try to read his lips, but when they briefly cut the oxygen, Turner can still talk. He knows what he wants to say, but his brain and mouth might as well be miles apart. The words come out slow and the syllables melt together.

“It is harder to be upbeat every day,” Turner said one recent afternoon, propped up in his bed. “But if I’m going to be here, I might as well enjoy it.”

Former NFL fullback Kevin Turner sits on the bed where he receives full time care. His battle has gotten attention in recent years, as he served as a face for the concussion litigation filed against the league. (Bob Miller/For The Washington Post)
‘Hangin’ in there’

When disease robs you of everything except thought and hope, you get creative. It’s like ALS stole the levers that control everything above the waist — hands, arms, head — so Turner must rely on a communication system that is complex and constantly evolving. In addition to mouthing words, blinking eyes and tapping feet, Turner has a large posterboard with the alphabet spelled out. Someone holds it while he points to letters with his foot, spelling out his requests and needs.

Against one wall is a computer monitor, just a few sizes bigger than an iPad. The Tobii eye-tracker allows Turner to type, surf the Web, even check Facebook without using his hands. He instead focuses his eyes on the keyboard in front of him, moving his gaze from letter to letter, as the words slowly emerge.

“I’m a little slow right now,” the machine’s automated voice says.

In response to a question about how he’s feeling, Turner’s eyes and the computer’s voice respond: “Hangin’ in there like a hair in a biscuit.”

He had the disease diagnosed in May 2010, 11 years after he played his last NFL game. ALS was just a foreign series of letters to the Turner family then. “I had to Google it to find out what we had going on,” Raymond said. The first doctor gave Turner 12 to 15 years to live, the second five to six and a third two to three.

In the early stages, the frustrations were constant but mostly manageable. Turner, a divorced father of three, struggled to shave, buckle his belt, put on socks or grip a steering wheel. Four years later, those feel like pretty good problems to have.

“I know it’s just eating him alive because he can’t do things for himself,” Raymond said. “He has to ask us to wipe his eyes, scratch his back or whatever. He can’t do any of that, the little things that we take for granted.”

Others help with the menial tasks — he has a full-time nurse, his parents stay with him in his home on the outskirts of Birmingham and Sanderson, his college roommate, lives nearby and also serves as a caretaker — as Turner’s daily challenges now feel much bigger.

“Where in 2010 and 2011, those things were frustrating,” he says, “now they’re life or death.”

A documentary, “American Man,” depicts him adjusting to life with ALS and trying to adjust to a body in the early stages of betrayal. “If I get to where I can’t drive, I’m going to go insane,” he said in 2010.

Now he spends most days in bed. He hasn’t been behind the wheel in two months.

“It probably does get to him,” says his mother, Myra, “but we don’t know.”

“He won’t show it,” says Raymond. “You can tell sometimes when he’s thinking a lot. But for the most part, I have never one time heard him say, ‘Why me?’ Never.”

Though the disease has a big head start on science, Turner has tried to be aggressive with his fight. He’s traveled the country visiting doctors, specialists and modern-day miracle workers. He did a hyperbaric treatment twice in 2012, and this fall spent several weeks in Port St. Lucie, Fla., undergoing a nutritional program and study.

After a month in Florida, though, Turner was dropping weight and struggling to breathe and swallow. In just a few months he’d dropped around 50 pounds. A man who once played at 250 pounds suddenly was down to 150. He abandoned his treatment and returned to Birmingham in October, but being home didn’t help. Within a couple of days, on Oct. 25, he was in an ambulance, headed toward an intensive care unit.

Turner was suffering from severe dehydration and pneumonia, which led to respiratory failure. He was able to take oxygen in, but couldn’t exhale carbon dioxide out. He wasn’t certain how much longer he had to live. Family asked if he wanted visitors. “As long as they laugh,” he told them. He couldn’t bear the idea of friends coming to cry over him.

Doctors presented his options, procedures that would keep him alive but also the exact measures he’d long ago ruled out. He didn’t want to have a feeding tube or a tracheotomy, had little interest in being tied to machines all day. After much discussion, Turner accepted that he didn’t really have a choice.

“Honestly, had he not chosen to go on a ventilator he probably wouldn’t be here right now,” Sanderson says. “He’d be gone. That’s what we were preparing for really. It was that dire a situation.”

Turner absorbs a tackle while with the Eagles in 1996. He believes there is a direct correlation between football and his condition. (George Gojkovich/Getty Images)

Turner receives help changing his shirt from nurse Allison Sanford, who is now his fiancee. (Bob Miller/For The Washington Post)
Seeking a cure

Most people who have ALS diagnosed die within a few years. Fewer than five percent live longer than 10 years. The disease usually kicks in around ages 55 to 60. Turner was 41 when a doctor delivered the news.

Former Ravens linebacker O.J. Brigance was 37 when he received the diagnosis. Former Raiders running back Steve Smith was 37. Ex-Saints safety Steve Gleason was 33. Former Vikings safety Orlando Thomas was 31. (He died last month at the age of 42.)

“Unfortunately, there will be more that come out in the next couple of years,” Turner says. “I hope not, but I believe it will.”

He believes his condition is a direct result of his football career. He doesn’t know the exact number of concussions he suffered but knows research suggests former football players are anywhere from four to eight times more likely to have ALS diagnosed than the general population. Turner wants researchers to study his brain and spinal cord after his death to better understand the link.

“If you look back to the punishment that we were doing to our own brains, it’s ridiculous and doesn’t makes sense for a man to bang in his own head against a wall,” he says.

Turner isn’t angry. He’s focused his energy on two main areas: encouraging football officials to make the game safer and beating a disease that remains undefeated. Even as his condition has worsened, his family’s confidence hasn’t wavered.

“From Day 1, I thought he could beat this,” Raymond says. “And I still think he will. I don’t know how. But there’s a lot of things out there that we can try.”

The sense of urgency has intensified in recent weeks. Turner is not rich. He earned about $8 million playing football, but in 2009 he filed for bankruptcy, around the same time he was divorced. Even as Turner fights to outlive a dire prognosis, he’s hopeful his court case is approaching the finish line and financial aid might be around the corner that would allow him to begin an experimental stem-cell program in January or February and maybe prolong his life.

The concussion settlement rests in the hands of U.S. District Judge Anita Brody. The deal would mostly benefit those with serious conditions, such as Turner. Former players experiencing symptoms — lingering headaches, depression, difficulty sleeping — or with a less severe diagnosis won’t benefit nearly as much. Last month Brody heard concerns from objectors to the deal, those who want the NFL to do more.

Turner stands to receive the maximum award of $5 million under the proposed terms of the settlement. But for now he waits. If Brody nixes the deal or the objectors opt to appeal, the waiting could drag on for months.

“I keep in the back of my mind, if I am hanging on for one more week or month or year, you know, they will come out with something that can cure it, maybe reverse it,” Turner says of the disease. “And it will happen one day, and I have a lot of faith in that happening. I’d hate to know that I gave up on a Monday and they found a cure on Tuesday.”

A life of meaning

A ventilator hummed as Allison Sanford stood over her patient and poured a can of nutrients and protein into a feeding tube. The nurse does this six times a day, 1,500 calories in each meal. She tends to most every need and has trained others how to care for Turner in her absence.

“Some days I’m better than others,” Sanford says with a smile. “Some days he wants to kick me. But we make a pretty good team.”

She began working as Turner’s nurse 18 months ago, and the two became closer and closer. A relationship blossomed and today she wears an engagement ring on her left hand and he has something big to look forward to.

Since the diagnosis, Turner has never been fatalistic, never talked about the likely outcome that lingers out there and awaits his family. But lately, it’s getting harder to not think about what his children might face if he’s gone.

“I’m hoping that I can stay on this thing for 20 years,” he says of the equipment situated next to his bed, the blinking lights and purring motors. “But I know the reality is that probably won’t be more than a year, at best. But you never know.”

Eleven-year-old Cole is especially good at lip-reading. Natalie, 14, is particularly attentive to her dad’s needs. And Nolan, 17, is great at distracting Turner, chatting about football or school. Of the three, Nolan probably understands the most but talks about it the least.

Four years ago, Turner made the choice to stop his sons from playing football. But as Nolan entered high school, Turner didn’t feel he could keep him from playing the game. After all, Turner says, the game is safer than just a few years ago, and coaches and parents are much more aware of head injuries and know what to look for. Turner also never forgets that football afforded him a pretty good life, despite the destruction it might have caused. Nolan just finished his junior season playing safety for his high school’s varsity team.

Turner is effusive when he talks about all his parents have done and hopes his kids might someday remember him as fondly. He’s started writing a letter to his oldest son that Nolan can someday read. Turner is using the eye-tracking computer, so it’s a slow process, but he hopes other letters might follow.

In the documentary, he said four years ago that he has no regrets about football. It gave him purpose then and it gives him purpose now.

“I think my life will at least mean something,” he said. “I think all of us want our life to mean something.”

Turner doesn’t need to be reminded about all the ways his life has changed. But he’s able to see the bright side, too: He hopes the game is safer, he hopes the lawsuit helps people long after he’s gone and even as he continues his fight, he knows to cherish each day.

“I’m not in pain,” he says. “As long as I have my family and friends around like I do now, you know, I’ll make the best of it.”