Since 2011, Steve Gleason has traveled to Machu Picchu, road-tripped from New Orleans to Alaska and started a nonprofit. He also became a consultant for Microsoft and collaborated on a movie that was accepted by the Sundance Film Festival — even though he gradually lost the ability to talk and became paralyzed except for his eyes.
Mr. Gleason has A.L.S., a motor-neuron disease that afflicts an estimated 20,000 Americans. Patients lose muscle control, which eventually causes difficulty in swallowing and breathing. There is no cure, or even an effective treatment; the average life expectancy is two to five years after the diagnosis.
“The disease takes away your entire physical body and almost always leaves your mind and eyes intact,” Mr. Gleason wrote in an email. “When diagnosed with A.L.S., most people are expected to fade quietly away and die.” He decided to forge a different path.
© 2016 The New York Times Company.