A year after he noticed unusual sensations in his hand that suggested lessened functions of his nerves, Steve Saling was diagnosed in October 2006 with Lou Gehrig's disease or amyotrophic lateral sclerosis, what most people know as ALS.
His now 10-year old son had been born only the previous month and Saling, who was visiting a nursing home where his grandmother resided, did not at the time suspect that he would be needing his own care facility soon. He was 38 years, full of life and practicing landscape architecture in one of Boston’s top design firms. When his diagnosis was confirmed, doctors gave him three to five years to live. Saling says that after his diagnosis, he was determined to do what he could to live for 38 more years.
The motor neuron disease, which is diagnosed every 90 minutes, still has no definitive cure and very few treatment options are available. Back in 1995, the Food and Drug Administration (FDA) gave its approval for the single medicine for ALS, a drug called Riluzole, that slows the disease's progression in patients, extending survival for a few months. Stem cell trials and other potential treatments are becoming increasingly popular as awareness of the disease grows.
After assessing the disorder and current ineffective methods of interventions, Saling decided that rather than fight the losing battle against his disease’s progression, he would figure out the best way to live with it. He was determined to find a better alternative to the less-than-acceptable conditions he found that other ALS patients in 24-hour care facilities were living under.
Six months after his diagnosis, Steve Saling needed a cane to walk. His leg muscles were too weak to do the job themselves. He knew he had to find another way even if he had to build it himself, which he did.
Creating a haven of hope
Saling met Barry Berman, the CEO of the Chelsea Jewish Foundation, by chance in 2007 at an ALS symposium outside Boston, Massachusetts. At the time, Berman was working on his own project, GreenHouse, which had a better vision of nursing homes that would provide specialized care to young people with disabilities, particularly MS (multiple sclerosis) and ALS.
The two partnered on Saling’s project, with the Foundation later providing a $500,000 grant to allow him to bring his dream home to life. Within a few months of meeting, Steve Saling moved into one of Berman's long-term assisted living facilities, a home within the Leonard Florence Center in Chelsea, MA.
Berman says he got to learn that with Saling’s technological abilities and architectural knowledge, he would provide the professional expertise needed to fit all the technology they dreamed of having in the house. With that show of faith and the grant provided, Saling started working on the PEAC (Promixis Environment Automation Controller), an electronic automation system that now allows him and his housemates move around the residence without help.
The home was designed as a residence designed to offer skilled nursing services and is fully licensed as a nursing home in the state, however through the wireless PEAC system, Saling and other patients are able to close and open doors, operate the TV and lights and perform other basic tasks with small movements of their eyes and in some cases, using brain waves.
Saling designed the facility to maximize the person-to-person interaction he felt other nursing residences were lacking. The Steve Saling ALS Residence officially opened in Chelsea in February 2010 is the only facility where ALS patients on ventilators are allowed to go out of the residence, and be involved in activities. It is also the only long-term ALS facility providing residents with comfortable lives and allowing their family and friends easy access so they maintain close and near-normal relationships.
Some of Saling’s housemates are Patrick O'Brien, an award-winning filmmaker whose ALS documentary was shown at the Tribeca Film Festival and still directs from his wheelchair, and Dustin Howes, a political science professor at LSU, Alabama. The three spend their days engaged in discussions about sports, watching TV and moving around the house with some degree of autonomy.
Saling also started his organization, the ALS Residence Initiative, to encourage the development of such high-tech homes throughout the US.
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