For ALS Patients, Life Can Change At The Blink Of An Eye

February 22, 2016 7:05 pm
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February 19, 2016
By Catherine Whelan, WGBH
“We’re the end of the line,” Judy tells me firmly. “It can be hard to come here at first after people get the diagnosis.” I’m at the Leonard Florence for Center for Living in Chelsea, sitting with Judy Mastracola, the director of special projects. I look around. The space is bright and clean, as you’d expect any medical space to be, but also—and there was no other word for it—comfortable.
We are sitting at a little table in the facility’s cheerful café. A resident motors by in a complicated wheelchair rig. He looks purposeful. Judy tells me he’s late for a trip out to The Cheesecake Factory. I laugh. “I’d hurry too.”
ALS— known colloquially as Lou Gehrig’s disease— is neurodegenerative. In the human body, muscles are controlled by motor neurons that reside in the brain. They are synaptically connected to motor neurons that reside lower down in the brain, as well as motor neurons that reside in the spinal cord. ALS causes weakness of either upper motor neurons or lower motor neurons or both, and it results in a profoundly disabled body, but an impeccably preserved mind— Stephen Hawking’s for one.
Judy introduces me to Steve Saling, the center’s eponymous and most famous resident. Steve navigates the world through a computer-wheel chair interface that he controls with small eye movements. He literally plunges into the two dimensional screen to select options, type words, and get answers. I watch him command the machine to open a door.
“Are you magic?” I ask. The corner of his lip twitches, almost imperceptibly, and the door swings open.
We get off the elevator. The Steve Saling ALS Residence has a clapboard siding, and a large mail box. The space is equipped with the latest technological innovation to allow individuals with ALS the most amount of independence possible. It has a living room with a fireplace, and an Auburn Football on the mantle. Steve takes me into his room. It’s full of pictures of family and friends, and his various degrees, including a bachelors degree from Auburn University.
“Cam Newton is having a fantastic season,” I muse, looking at pictures of Steve rafting. The corner twitches again, and the robotic voice says “yes he is.”
Our tour continues through a chef’s kitchen, and I comment that I like the art hanging on the opposing wall. “My mother painted that,” a voice comes soft and strong from a women sitting in the sun. Judy introduces me to Andrea, another resident. She chats slowly, but joyfully about her writing.
Steve listens patiently— patience is a reality for those living with ALS, I realize. An incorrigible space nerd, I have read everything Stephen Hawking has ever written, but it took until meeting Steve to really understand him.
Steve tells me more about the Center, and how dramatic the right technology can be, how impactful it is to live as independent as his mind is. He tells me about going skydiving. He tells me about producing the video himself. As a producer and as a person, I am humbled.
Not a college football fan myself, and certainly not an Auburn fan. I mutter “bodda getta.”
Then came the biggest twitch yet.


To hear Betsy Mullen, COO of the Chelsea Jewish Lifecare and Ina Hoffman, Admissions Director at the Leonard Florence Center in conversation with Callie Crossley on “Under the Radar”, click here: http://news.wgbh.org/2016/02/19/local-news/als-patients-life-can-change-blink-eye