Living with ALS, Nike designer Robert Feliciano has purpose

He was moving in the fast lane as a model and Nike designer in New York City when he realized he could barely keep his grip on a glass as a part-time bartender.

“I went to grab a pint to put beer in and almost dropped the glass,” he said.

It felt like his hand had fallen asleep, but the sensation never left. A few months later in 2018, he would be diagnosed with ALS, a disease that now has left the 41-year-old from Buffalo unable to move, breathe or speak on his own. He speaks, designs and interacts with the world through his eyes.

And with his remaining strength, he said, he focuses on the narrow hope for recovery and on raising awareness about ALS until a cure is found.

He said he’ll keep designing “hands free” for as long as he can. That’s his connection to sanity, he said, a visual diary of his own journey.

“It is everything to me,” he said.

Feliciano spoke with The Buffalo News for a few hours in September from his hospital room at Erie County Medical Center, just prior to him being moved to Terrace View nursing home next door. Though a tracheotomy tube ended his ability to speak in January, he uses eye-tracking computer technology to talk via text.

Conversing with Feliciano in real time takes stamina, with an eye-tracking texting screen that is easily disrupted if Feliciano or his eye laser-tracking device is jostled and misaligned.

Every time someone accidentally disrupts his communication system, a wave of immense frustration washes over him because there’s nothing he can do about it or anyone he can alert until someone independently notices the problem.

Feliciano uses his eyes to move from letter to letter on an on-screen keyboard. Suggested words pop up as he spells, similar to phone texting, except at a much more tedious pace. Any response beyond superficial yes-or-no questions can take…