On September 25, 2006, one year after Hurricane Katrina ravaged their home city, the New Orleans Saints took the field at the newly-reconstructed Superdome for one of the most memorable NFL games in franchise history. The team’s safety, Steve Gleason, helped secure their victory when, early in the first quarter, he blocked a punt by the Atlanta Falcons in a play that would one day be immortalized with a statue outside the stadium, a symbol of the city’s rebirth after the devastating storm.
Steve Gleason now lives with ALS and has lost much of his muscle control. The former NFL hero can no longer move or speak and needs assistance to eat and breathe. However, in Gleason’s own words, just as the city of New Orleans “had no plans of fading away quietly and disappearing,” neither does he. Gleason uses a tablet equipped with eye gaze technology and a speech generating device to communicate. The words he types with his eye movements can be selected to be spoken, emailed, and even texted. He can also do things such as pay bills, set a budget, write articles, and much more. In 2019, Gleason even helped launch a wheelchair system that can be controlled using eye gaze technology.
“This technology is life-sustaining, and it allows me to be independent and productive. In a sense, this tablet is a cure for me,” Gleason wrote in 2014, three years after his diagnosis.
May is ALS Awareness Month, and although there is still no cure for ALS, eye gaze technology can help those living with the disease remain productive and purposeful, even as the disease robs them of their physical abilities. This technology works by using an eye tracker that sends out near infrared light, which is then reflected in the user’s eyes. Those reflections are picked up by the eye tracker’s cameras, and using filtering and calculations, the eye tracker determines where the user is looking. This technology has come a long way from the devices available when Gleason was first diagnosed.
Justine Thole, a speech-language pathologist and consultant with Tobii Dynavox—one of the few companies in the St. Louis region that develops and sells communication apps, speech generating devices, eye trackers, and eye gaze-enabled devices—recalls how, 10 years ago, devices were often slower to respond, required frequent re-calibration, and would not work well if the user was wearing glasses.
Unfortunately, these issues prevented Thole’s late sister-in-law, Amy, from fully utilizing eye gaze technology prior to losing her battle with ALS in 2011, as she had worn reflective glasses that interfered with the old technology. “I now rarely come across somebody who cannot use our eye gaze technology. It has advanced so much,” Thole says. “If [Amy] had been able to have the technology that’s available today, she would have just run away with it.”
Insurance coverage for such devices has also improved. In 2015, both the U.S. House of Representatives and the Senate unanimously passed “The Steve Gleason Act” to improve Medicare regulations and protect patient access to life sustaining communication devices. Three years later, “The Steve Gleason Enduring Voices Act” was passed to replace and build upon the original law.
“Life is difficult,” said Gleason in 2012, reflecting on his diagnosis, “Not just for me or other ALS patients. Life is difficult for everyone. Finding ways to make life meaningful and purposeful and rewarding, doing the activities that you love and spending time with the people that you love—I think that’s the meaning of this human experience.”
ALS has no cure, but eye gaze technology can help keep life fulfilling for those faced with the heart-wrenching diagnosis, even as symptoms progress. Thole recalls the words typed to her by a physician living with ALS, who would once again be able to provide telehealth services after he received his eye gaze communication device: “You made me want to live.”
“To me, it is truly life-changing,” says Thole. “When you give someone an eye gaze device and they can tell the people around them they love them, they can text a friend, send a gift, watch a Netflix movie without having to ask someone else to turn it on for them. It opens their world back up.”
As we continue to recognize ALS Awareness Month, we look toward a future without ALS. Until then, it is our hope that by working with those served by our chapter along with the speech-language pathologists connected to our certified and recognized ALS clinics, we can ensure people have access to technological innovations that will continue to help people with ALS hold onto their voice, their purpose, and their drive to fight this devastating disease.
If you are interested in learning more about how we help people with ALS ensure their voices are always heard, please contact Anna Zelinske.
ALS doesn’t stop. Neither do we.