Architect with ALS designs a residence he can control with just blinks

Steve Saling helped design features of the Leonard Florence Center's Dapper McDonald ALS Residence, intended to preserve the independence of those with ALS, where he is a resident. Credit: Josh Reynolds for STAT

Steve Saling helped design features of the Leonard Florence Center's Dapper McDonald ALS Residence, intended to preserve the independence of those with ALS, where he is a resident. Credit: Josh Reynolds for STAT

Steve Saling is sitting in his bedroom at the Leonard Florence Center for Living just north of Boston. He aims his gaze at the tablet mounted to his wheelchair and, with a small movement of his facial muscles, raises the window shade to sunlit afternoon clouds.

Now, behind thin, oval eyeglasses, Saling again blinks purposefully, like a telekinetic superhero. The door opens, and he steers his well-equipped wheelchair through smoothly.

A landscape architect by trade, Saling was diagnosed 10 years ago with amyotrophic lateral sclerosis, or ALS, commonly called Lou Gehrig’s disease. It’s a neurological condition that affects nerve cells in the brain and spinal cord. Over time, people with ALS lose the ability to walk, speak, and move without assistance.

As they become more disabled, people with ALS often move into long-term care facilities. The one Saling lives in, however, is not a typical nursing home. Big windows replace harsh artificial lights. Defiant reds, warm golds, and cheery greens replace the typical institutional palette of antiseptic blandness.

But the most unusual difference is the way this place works. And Saling is partly responsible for that.

Unwilling to accept a life utterly dependent on caretakers, Saling designed a series of systems that let patients with ALS control their environment in the assisted living center with the barest of movements: blinks and facial twitches. They can open and close doors, turn on and off lights, change TV channels, and control heat and air-conditioning, among other things.

The first cluster of accessible rooms, named for Saling, opened in 2010. Last month, the Florence Center opened a second set of rooms, called the Dapper McDonald ALS Residence. All told, there are now 30 bedrooms here equipped with systems that give patients with ALS, multiple sclerosis, or other disabling diseases some measure of independence.

Saling also established the ALS Residence Initiative, a fundraising and advocacy group that aims to build more such homes to serve the estimated 12,000 ALS patients across the country. The group’s motto: “Until medicine proves otherwise, technology IS the cure.”

The advocacy group is working with local ALS patients and caregivers to build automated assisted living homes in New Orleans (where the residence features a garden designed by Saling) and in Dahlonega, Ga. Fundraising and planning are underway as well in Dallas, Baltimore, and Windham, Maine.

Patients with ALS “want to live in residences like this,” said Barbara Newhouse, president and CEO of the ALS Association in Washington. “We steer people toward resources that would benefit them, and this is one model of residential care that we look to.”

Steve Saling, a retired landscape architect, sits in his room. Here, he can control the window shade, television, and door with subtle movements of his face.  Credit: Josh Reynolds for STAT

Steve Saling, a retired landscape architect, sits in his room. Here, he can control the window shade, television, and door with subtle movements of his face.  Credit: Josh Reynolds for STAT

Calling the elevator with a blink

Saling, 47, rolls past the art decorating his room — original works by his 9-year-old son, Finn, set against a deep-red wall — and out to a hallway, pulling up toward the elevator.

He’d summoned the elevator before he left his room, and indicated where he wanted to go. The secret is a small, white box on the wall above the elevator call buttons. After Saling’s computer converts his blinks into radio frequency signals, the little box conveys them to a receiver in the basement. The signals are then sent as commands to the elevator’s computerized operating system.

Saling recalled that there was skepticism about the elevator during the design process.

“The biggest challenge was convincing the elevator sub-consultant that we could automate his elevator,” he says. “A few of the subs were reluctant to embrace change, but they all came around. It all came out beautifully.”

Saling moves on and points toward the central, open kitchen. There’s a fire safety feature built in — important in an apartment with 10 severely disabled people. In case of fire, the kitchen is automatically walled off from the rest of the suite. This contains the smoke or fumes, and gives residents time to evacuate if necessary.

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