Gleason Keeps Sense of Humor in Face of ALS

Gleason Keeps Sense of Humor in Face of ALS

NEW ORLEANS -- Sitting in his mechanical wheelchair and trying to talk, struggling to make people understand, New Orleans Saints folk hero Steve Gleason brought his press conference on ALS to a standstill.

 

This was my fault.

 

What had I said? Nothing problematic, I thought. For several minutes Gleason's shaky, computerized voice had filled this room at the New Orleans Convention Center on Wednesday, and now that it was time to ask questions I wanted to know how he had done it.

 

This press conference was all about Gleason's determination to fight amyotrophic lateral sclerosis (ALS), to make the hell-on-earth death sentence a little less hellish by fighting it with advanced technology -- technology like operating a computer, even speaking through it, with your eyeballs. And so when Gleason's close friend and former teammate with the New Orleans Saints, Scott Fujita, asked if there were questions, I had one:

 

"How was Steve speaking to us? Was that recorded or was he doing it with his eyes or what?"

 

Fujita was answering -- "That was his synthetic voice. He logged hours of his voice, putting it on the computer, and he [summons the words] with his eyes" -- as Gleason started to fidget. Before Fujita had finished talking, Gleason was mumbling something. People were walking up to him, listening, trying to understand. Finally, a woman to Gleason's right got it.

She said, "Can you turn Steve on? In the back? He wants to talk."

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