Team Gleason House provides comfort, assistance for those with ALS
Steve Saling cannot feed himself — he can’t even eat real food — and he lost the ability to speak years ago.
Afflicted with one of the world’s cruelest diseases, Saling, who will soon turn 45, has watched his body slowly give out on him over the past eight years. And yet his words, like those of many other people suffering from amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s Disease, are cheerful, full of humor and poignant reminders that life is always what you make of it.
“The greatest thing about ALS is the other people who share my condition,” Saling wrote in an email. “Apparently, assholes are immune to ALS, because the ALS community is filled with truly amazing people.”
Included as one of the “amazing people” Saling knows suffering from ALS is a dear friend of his, an inspiration to people with ALS everywhere who is no stranger to most New Orleanians.
“I’ve had a few people think I was Steve Gleason,” Saling said. “I bask in the glory for a couple of seconds before I correct them.”
Saling was diagnosed about three weeks after Gleason’s famous blocked punt in the fall of 2006 that has come to symbolize the resurrection of an entire city following Hurricane Katrina. What neither realized then was that their paths would soon cross for the most unlikely of reasons, and that as of this year, the inspirational duo would have opened the only two fully automated, ventilation-patient ready ALS facilities in the country, according to those familiar with the projects.
Saling, a landscape architect and inventor, is the original mastermind of the idea that spawned the first facility in Boston about three years ago.
Soon, the nation’s second facility, the Team Gleason House in New Orleans, will have its first patient. The long-term care home is located on the bottom floor of St. Margaret’s Daughters nursing home — formerly Mercy Hospital before Katrina’s wrath severely damaged it, leading to its eventual closure, like so many other New Orleans landmarks.
The Team Gleason House, better described as an 18-room smart house, is one of the many shining achievements of Team Gleason. The nonprofit organization has worked tirelessly to raise awareness for rare diseases since Gleason created the organization about eight months after his diagnosis in 2011.
“It is a disease that strikes anybody at any time. It knows no boundaries,” said Jane Gilbert, CEO and President of the ALS Association, a national ALS-awareness group.
“There’s no treatment, no cure, and inevitable death. And it’s usually fairly quickly, between three and five years,” Gilbert said. “So it is a devastating disease.”
Disease experts at ALSA describe the sickness as a terminal neuro-muscular illness that causes severe muscle weakness, leading to paralysis and eventually the loss of the ability to speak, eat, cough and breathe.
“The effects of the disease are that it paralyzes the person, literally leaves them trapped within their body. And in most cases, the mind is not affected,” Gilbert said.
As is the case with Gleason, who uses his mind — unaffected inside a body that has slowly failed him — to convince donors that more research will lead to an easier life for those with ALS.
“We’re always very, very thankful as an organization when someone like Steve, and Team Gleason, steps up to the plate and really tries to make a difference, a positive difference, while living with this disease,” Gilbert said, pointing to examples like the public service announcement that aired during last season’s Super Bowl XLVII in New Orleans. The one-minute video featured notable NFL players such as Baltimore Ravens linebacker Ray Lewis, Green Bay Packers quarterback Aaron Rodgers, a handful of New Orleans Saints and other players and coaches from around the league describing, in painful detail, the persistent nature of the deadly debilitating disease.
It ended with a clip of Gleason preaching an emotional, one-sentence message to millions of viewers around the world.
“Let’s put our heads together and find a cure for ALS,” Gleason said while seated in a wheelchair, with subtitles crawling across the screen to translate his hard-to-understand words that came from vocal chords that have since gone silent. Now Gleason, like others with speech disabilities, speaks using a digital voice that annunciates words he spells out on a computer tablet using highly sophisticated eye-tracking technology. He must concentrate his eyes on each individual letter to formulate words and sentences that allow him to continue communicating with his wife, Michel, his son Rivers, and many others.
The man who created Gleason’s invaluable device is Eric Valor, Team Gleason’s science and technology adviser, who, like Gleason and roughly 30,000 other people in the United States, suffers from ALS.
“I spent two decades keeping machines alive before my career was cut short,” said Valor, a former information technology guru. “Now it’s their turn.”
A quadriplegic who requires a tracheotomy to breathe, Valor said before his diagnosis he always wanted to travel to the moon.
“At least a week in Earth’s orbit would suffice,” he joked.
Now, he said he’s developed “a more down to Earth” approach to life, which includes enjoying the company of loved ones and continuing to tinker with computers with the hope of improving the quality of life for people with ALS in the future.
Technology equally advanced to the kind Valor developed for Gleason will allow people with ALS to live practically independently inside the Team Gleason House.
People with ALS will have a device hooked up to their wheelchair that will enable them to open doors, drawers and windows, along with navigate the home and even stroll outside to the garden, all without lifting a finger.
“I almost equate it to a super-duper-duper smart house,” said Lois Backon, JPMorgan Chase & Co.’s head of strategic community partnerships and global philanthropy. Backon was instrumental in bringing several hundred thousand dollars of donation money to fund the technological equipment needed for the facility.
She first met Gleason at a United Nations innovation summit in May 2012, where he petitioned resource-rich groups to support research for ALS, using his own emotionally gripping testimony to convince leaders to join his cause.
“(Steve) was basically challenging this entire summit of creative thinkers to understand that since there was no medical cure for ALS, that technology was the cure,” Backon said. “It was just a very, very compelling call to action — that technology could really solve, or begin to solve, an aspect of this neuro-muscular disease.”
Team Gleason has recently increased its technology-related initiatives, tackling such tasks as providing speech-enabling equipment to other people with ALS.
One such person, Matthew Olins, said in an email from his residence in Marseille, France, that he uses his tablet for everything: listening to music, watching New England Patriots football games and Boston Red Sox baseball games, giving basic instructions in French to his caregivers, conversing with friends and family, online shopping and writing short stories for his children, to name a few.
“The tablet is essential for maintaining my quality of life, in all aspects,” said Olins, who first noticed symptoms of ALS in 2010 and has since lost the ability to eat, speak and drink.
Team Gleason helps out people with ALS in other ways, too, such as its “adventures” program, which sends able travelers on bucket list-fulfilling journeys around the globe.
The program allowed Jay Rink, a former Tulane defensive lineman and Brother Martin standout, to travel to Montana with two of his sons and float down the Missouri River on a Lewis and Clark-style canoe trip.
“My favorite part of the trip was just watching my boys skip rocks along the Missouri,” Rink said.
Other journeys have led people with ALS from Hawaii to Panama to Italy.
“Most ALS patients choose death. So that’s something that Steve is trying to change,” said Clare Durrett, Team Gleason’s associate executive director. She, along with a handful of other nearly full-time volunteers, including Gleason and his wife, Michel, have one ultimate goal: bringing the world of ALS together, guided by people with ALS, to ultimately find a treatment or cure for the disease.
Researchers have a long way to go before zeroing in on a cure, meaning until then, inventions like Valor’s and Saling’s will provide invaluable comfort to those who live in a world riddled with challenges in everything they do.
Saling doesn’t dwell on his limitations — he still does one assisted squat per day, despite ALS’ best efforts to make standing ancient history. Instead, Saling focuses his energy on ways to make his life more enjoyable, such as developing what he described as a discrete system that allows him to urinate all day without emptying a container.
“I want to change the prognosis of ALS so that people don’t expect to die unless they refuse technology that will keep them alive,” Saling wrote, adding, “Until medicine proves otherwise, technology is the cure.”