Local couple celebrates a major victory for ALS voices across the nation

This is an archived article and the information in the article may be outdated. Please look at the time stamp on the story to see when it was last updated.

 

Data pix.

New Orleans WGNO - The boost Steve Gleason gave New Orleans when he blocked that punt against the Falcons after Katrina could be nothing compared to how the Saints fan favorite is helping people with Amyotrophic Lateral Sclerosis (ALS), the same disease he is struggling with himself.

Gleason was on a plane on his way to a high school reunion on the West Coast Wednesday, when the act he inspired received a unanimous favorable vote in the House of Representatives, sending it to President Obama’s desk for a final stamp of approval.

It’s a huge victory for families living with the muscle and nerve-affecting disease that strikes about 15 Americans each day.

Karen Sork remembers life before her husband Michael received his communication equipment from Team Gleason.

"It was very tough. I mean we were spelling—and imagine having to spell a 16-word sentence by starting out 'Is it a vowel?' and if he says no, then it's ‘Okay is it b, c, d…?’ And the more the ALS progresses, the harder it gets," says Mrs. Sork, who says that these days, Michael can tell his five grandchildren he loves them—and family members look forward to her husband’s weekly text messages.

Michael, whose mantra is "make it matter," has a voice powered by infrared technology that lets him speak for himself, using his eyes—and sometimes a little help from his wife.

“Having the Steve Gleason Act pass means so much to so many people. This device gives me my voice so I can live purposefully, despite my ALS. Many people like me are fathers, husbands and grandfathers, and not being able to tell them (loved ones) I love them would be tragic," says Michael.

The amendment means more ALS patients nationwide will be able to express their feelings to loved ones—and their needs to caregivers.

“There are really no words to describe how much it means to have this kind of technology and having it available to others,” says Karen Sork, adding, “Prior to this when Medicaid made their changes, they closed the communication devices which means they shut off all internet access.”

Paul Varisco is the Director of the Gleason Foundation. He’s also Steve Gleason’s father-in-law.

“There was a Medicare ruling that actually locked the speech devices so that people couldn’t communicate like they used to at one time. We found out about it started our effort and actually fought its way through, because we know how important it is to have somebody that can speak,” says Varisco.

The Steve Gleason Act allows for equipment upgrades, greater internet access and allows people with ALS to keep their device if they are admitted to a hospital, hospice or other care facility.

It's an act that was originally given a two percent chance of passing by www.gov.com , but the former Saints player and his foundation live by his slogan: "No white flags."

“The community has embraced us so much and inspired us to continue what we do, just like Steve inspires people and we couldn't be more excited. We've done a lot for individuals, especially in this area, but this will affect people around the country and it really changes their lives,” says Viarisco.

He’s talking about lives like the Sorks, who have optimistic eyes on the horizon.

"The cure is the next thing. That is what we're looking for,” says Karen Sork—and she says she's confident that if one can be found, Team Gleason will find it.

Notice: you are using an outdated browser. Microsoft does not recommend using IE as your default browser. Some features on this website, like video and images, might not work properly. For the best experience, please upgrade your browser.