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Man Designs Home That He Can Control With His Eyes

December 22, 2016

Steve Saling was visiting his grandmother in her nursing home, on his 37th birthday, when a pencil inexplicably fell out of his hand. Little did he know, that soon he would have to look for a care facility of his own.

About a year later, he was diagnosed with ALS, otherwise known as Lou Gehrig’s Disease. Saling was given three to five years to live, but he was determined to not let the diagnosis become a death sentence.

"From the beginning, I was determined to live another 38 years," Saling said. Once Saling concluded he couldn't stop the progression of his disease, he decided to figure out the best way to live with it. But he soon realized that the options for day-to-day care were far worse than he could have expected.

He had made friends among other ALS patients online, but when he visited them, many had 24-hour home care or were confined to beds in nursing homes, soiling their own sheets, with extremely limited person-to-person contact.

Saling was determined to find another option, even if he had to create it himself.

He found hope at an ALS symposium outside Boston where he met Barry Berman, the CEO of the Chelsea Jewish Foundation, an assisted-living facility in Massachusetts. Berman was developing a new kind of nursing home that he called a GreenHouse, specializing in the care of young people with disabilities, particularly ALS and multiple sclerosis.

Many details remained to be worked out, but Berman and Saling made an immediate connection. A few months later, Saling moved into one of Berman's assisted-living facilities.

"As we got to know Steve's ability with technology and his knowledge as an architect, it just became a natural progression that he would provide the expertise and knowledge to get all the technology in the house," Berman said.

With a grant of $500,000 from Berman, Saling went to work. He started by designing an electronic automation system called a Promixis Environment Automation Controller, or PEAC. The system uses a wireless signal to allow Saling and other patients to open and close doors, call an elevator, and operate the TV and lights. They carry out these tasks with small movements of their eyes -- or, for some patients, using brain waves.

Saling laid out the facility to maximize social interaction and designed the garden with a reinforced layer so wheelchairs wouldn't damage the lawn. His goal was to create a nursing residence that felt like home.

The Steve Saling ALS Residence opened in Chelsea in February 2010, the first long-term care facility designed for people with the disease. It's also the only facility where people on ventilators can get out of bed every day and leave the building, going to museums or baseball games.

Most important, the residence allows residents to maintain almost-normal relationships with family and friends, who are welcome at any time.

"They are encouraged to come and have their meals and stay overnight and be an integral part of the house; it's part of the GreenHouse philosophy," Berman said.

http://www.cnn.com/2016/12/22/health/als-steve-saling-residence/