ALS Awareness Advocate Steve Gleason Talks With a Computer That Reads His Eyes

Since he was diagnosed with ALS more than a decade ago, former NFL player Steve Gleason has become one of the most outspoken advocates for those living with the disease. His charity, Team Gleason, offers support and services for those who are living with the illness, and for their families.

One key problem that many with ALS face is that because the disease involves slow deterioration of the nervous system, they eventually lose the ability to speak. Communication is a crucial part of maintaining an ALS patient's quality of life, and many want to know how Steve himself speaks.

Steve uses a speech-generating device or SGD that scans his eye movements as he moves them across a screen and selects the words that he wants to say. While Steve's SGD uses eye movements, there are many different kinds of SGD that can use a combination of different movements in order to help a person communicate. As people progress through the disease, it's possible that they will progress through different movements.

In an article for The Washington Post written in 2014, Steve said that the SGD technology helped to sustain him.

"The words that I type can then be selected to be spoken or sent in an e-mail, text, or chat," he wrote. "I am able to use the same SGD to pay bills, set a budget, call/text/e-mail for help, play a video for my son, write this article, and much more. This technology is life-sustaining, and it allows me to be independent and productive. In a sense, this tablet is a cure for me."

In the article, Steve also discusses the prohibitive costs that come with SGDs, which typically cost around $14,000. At the time he was writing the article, he was doing so because of a proposed rule change that would have meant that SGDs were not covered under Medicaid, which is how thousands of ALS patients receive their care.

"I have always believed that every tragedy provides an equal opportunity," he wrote. "We can allow people who choose to live with ALS and other physically debilitating disease to continue to be productive and to access the only 'cure' available at this time — normal, basic technology that everyone, even toddlers use."

Steve's charity, Team Gleason, also provides aid for those who need SGDs in two ways, according to their website. The first is that they can assist with co-pays if SGDs are covered by a person's insurance, whether that's Medicaid or a private insurer. The second way they help is by providing loaner devices for people who cannot go through insurance to find an SGD.

"We have a limited supply of devices and will attempt to provide the device recommended by the Speech-language Pathologist, but we may not be able to provide the exact device requested," the site warns.

Team Gleason is clearly doing everything they can to make SGDs available. Steve clearly believes they are an essential part of ALS care, and his arguments are hard to argue with.