Home to help patients live independently

New Orleans will soon be the second place in the country with a residence house designed specifically for people living with incurable neuromuscular disorders like ALS and MS, thanks to former Saints player Steve Gleason, who has ALS.

Joined by Drew Brees at a presentation ceremony Thursday afternoon, Gleason thanked Chase bank for its $350,000 contribution that has helped to bring to reality Gleason’s dream for a place where ALS patients can live independently and productively. The facility is located at St. Margaret’s Skilled Nursing Residence on the site at the former Lindy Boggs Medical Center in Mid-City.

Following the presentation, Gleason gave tours of the nearly completed Team Gleason House for Innovative Living.

In the first of 18 rooms to be finished, Gleason gave a demonstration of the cutting-edge technology that allows him to control his environment without the use of his arms, legs or voice. Using only his eyes, Gleason opened doors, turned on and off the lights, opened the window shades, turned on the television and changed channels.

As he focused his eyes on the button on his computer screen for turning on the television, a video he produced came on the screen, showing clips of Gleason and his wife and son and their journey to create awareness and build the Team Gleason House.

A symbol of hope on the football field when he blocked a punt the night the Superdome reopened in 2006, Gleason retired as Saints player in 2008. He was diagnosed with ALS in 2010.

The nerve cells die in people with ALS, also known as Lou Gehrig’s disease. That causes a progressive loss in their ability to function, although their senses and ability to think or reason are not affected by the disease. Death often occurs within three to five years of an ALS diagnosis, with about one in four patients surviving for more than five years after diagnosis.

As his ability to speak diminishes, Gleason is spending considerable time using special software to record his own words and vocalizations into a “voice bank.”

Friend Mark Manchester said Gleason’s primary reason for recording his voice is so his 1-year-old son, Rivers, will be able to continue to hear his dad’s voice as he grows up.

Manchester, who was diagnosed with ALS in 2007, attended the event from his home in Prairieville. Manchester is on the board of directors for the ALS Association of Louisiana. He struck up a friendship with Gleason last July at the unveiling of the “Rebirth” statue portraying Gleason blocking the celebrated punt against the Atlanta Falcons. Since then they’ve raced cars together and hung out with the Saints players, Manchester said.

“This is his dream — to make the lives of others easier,” Manchester, who also uses a wheelchair, said from inside the walls of the new facility.

Michael Gilman, director of development for St. Margaret’s, said Gleason came to his organization last spring. Construction was already under way to replace the Lower 9th Ward nursing home destroyed by Hurricane Katrina. Gilman said a team from St. Margaret’s visited a facility in Boston that was the only residence specifically designed for people with ALS. The next step was to raise funds and incorporate the same technology in the New Orleans facility.

The day’s events also included the building of a garden by Chase employees (wearing T-shirts that said “Inspiring an entire city was the easy part”) in honor of former Chase Baton Rouge Market President Kevin Kelty, who attended the event and is also living with ALS.

Lois Backon, CEO of the JP Morgan Chase Foundation, said her organization became involved with the effort after hearing Gleason give a 20-minute speech in which he challenged the audience of bankers and politicians to turn their notion of problem-solving upside down and to find ways to use technology and innovation to give back the things that ALS take away.

Before introducing his former teammate and “dear friend,” Brees repeated Team Gleason’s motto — “No White Flags,” and said “We will find a cure. Technology is that cure for now, but we will find a cure — that is the ultimate goal.”

Using the special software, Gleason spoke in his own words and his own voice. But Gleason said his “synthetic voice” has horrible timing, so he would be skipping the silly joke with which he usually begins speeches.

He called the Gleason House in New Orleans the most significant achievement of the nonprofit Team Gleason foundation to date.

“A terminal diagnosis can really mess with your head,” he said, and “makes me want to run away to the moon.”

Gleason said because ALS is under-resourced and under-researched, many patients just fade away. “I didn’t want to fade away,” he said.

Gleason said when he began researching the possibility of potentially living with ALS for decades, he discovered three crucial elements: “the right support, the right technology and a purpose.”

The facilities within St. Margaret’s will allow people with ALS to be productive, purposeful and collaborate with others, Gleason said. “Artists can continue to be artists; teachers can continue to teach; architects can continue to design, and producers can continue to produce,” he said.

The technology and innovation of being able to navigate computers using only a person’s eyes and thoughts will one day be used by everyone in the world, Gleason said. “When that day comes, remember you saw it here first.”