Steve Gleason Embraces New Challenges in ALS Battle

ABC News(NEW YORK) — Steve Gleason is a hero in New Orleans.

The former safety for the New Orleans Saints earned that status when he blocked a punt by Atlanta Falcons’ Michael Koenen as the teams played in the Superdome in 2006.  The team went on to win the game.  It was the Saints’ first victory since the devastation of Hurricane Katrina the previous year, and the win raised the spirits of people in the city.

That game — and the symbolic turning point in the city’s spirits — was immortalized with a statue in Gleason’s likeness outside the Superdome.  The statue was named “rebirth.”

That symbol of resilience holds special meaning for New Orleans now that he’s battling amyotrophic lateral sclerosis (ALS), a severe neurodegenerative disorder also known as Lou Gehrig’s disease.

According to the Mayo Clinic, the disease causes progressive degeneration, killing the nerve cells that control the body’s muscles, including those needed to breathe, eat or perform other functions.  Those with Lou Gehrig’s disease experience increased muscle weakness, or paralysis and even death.

Gleason, 36, was diagnosed with ALS in 2011.

In an interview with ABC’s Good Morning America news anchor Josh Elliott, Gleason’s wife, Michel, described the moment they realized something was wrong.

“We were walking across the street.  And he tripped and fell, face-planted … you know, his foot dropped,” she said, adding that it was “devastating.”

Scott Fujita, Gleason’s friend and former teammate, described his own reaction when he got the news.

“I remember breaking down on the phone.  And my wife came into the other room.  And she felt like a close relative had just passed away.  It was intense,” Fujita said.

When Elliott first met with Gleason earlier this year, he’d lost most of his physical abilities, and was communicating through a computer that he controlled with his eyes.

Back then, Elliott asked him how the diagnosis changed his life. Gleason said that he had been losing his ability to run in 2011, and said he was “dreading the loss.”

“I wasn’t sure what I would do if I could no longer run,” he said.

And when he finally couldn’t run anymore, he said he chose to search for “new avenues of joy.”

“It has not been easy … And we’ve had to be very creative,” said Gleason, who uses a wheelchair full-time now.  “But with each loss we have worked to find the beautiful replacement.”

One of Gleason’s new avenues of joy is his son, Rivers, who was born soon after his diagnosis.

Gleason has been creating a video journal for Rivers, so that one day, his son can know his father.

At times, creating the journal — and seeing images of his old self — is difficult.

“I have moments where I miss my old self,” he said.  “But I think anyone can get caught up in what we used to have.  But at the same time, we can choose to focus on the beauty of now.”

Gleason also created Team Gleason, a foundation dedicated to raising awareness and finding a cure for ALS.  Many in the NFL have rallied around him.

When Gleason was diagnosed, he was told he had an incurable terminal illness and should prepare to die, Blair Casey, who manages Gleason’s foundation and helps care for him round-the-clock, said.

“And so when Steve was told that he said, ‘I’m going to prepare to live,’” Casey said.

Gleason has been living up to that pledge.

“I mean, this is a guy who one-year post diagnosis to celebrate he goes and jumps out of an airplane.  I mean, it’s unbelievable,” Fujita said.

Then there was the time Gleason told Fujita he wanted to go to the top of Macchu Picchu, an ancient Inca site located in the mountains of Peru.

“I said, like, ‘That’s 9,000 feet?’  And he says, ‘Yeah.’  And I said, ‘All right.  Don’t know how we’re going to do it.  But it’s booked.  We’re doing it,’” Fujita recalled.

And they did do it.

Copyright 2013 ABC News Radio