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Living with ALS

Steve Saling, cofounder of ALS Residence Initiative (ALSRI), traveled to Mt. Rainier National Park in August 2014.
I have been living with ALS for 8 years since diagnosis. I got the standard "2 to 5 years to live" prognosis that all patients do. I had done my research and I knew that technology was capable of restoring most everything ALS would take away. I don't want to minimize the extraordinary challenge it is to live with ALS, but I disagree that it is invariably fatal.

The first thing I did after receiving the diagnosis was to research where I would live as my ALS got worse. I was horrified at what I discovered. I knew I could count on my parents' help for a while but I plan to outlive them so I needed a long-term solution. I found other single guys with ALS like me online and went to visit them. They were living in a nursing home or chronic hospital, sharing a tiny room with a 90-year-old roommate. These people with ALS were kept alive with all of the technology that I had planned on using but they lived in their beds and were left staring at the ceiling.

I began to understand why a measly 5% of people with ALS choose to use a ventilator to prolong their lives. Our society treats prisoners with more dignity and respect than the chronically disabled, kept alive but with no life. I knew that I had to work quickly to avoid their fate.

I have found that sometimes it's better to be lucky than good. I was fortunate to be the right person, at the right place, at the right time. I happened to meet Barry Berman, who is a visionary in the nursing home industry. I was looking for living options for when my disease progressed and Barry had the idea to create a beautiful, high-tech home for people with debilitating conditions but he didn't know how he would do it. We quickly became partners, and in three short years, we have built something that has never before existed anywhere in the world: a fully automated, vent-ready, skilled nursing residence for people with ALS and MS. I was able to use my professional design experience as a landscape architect with my specialty of accessible design to help create a home that will blow your mind.

Barry promised to provide the finest, most compassionate care and true to his word, I am sharing an amazing house with 9 other friends-including 3 on ventilators-and we have healthcare professionals on-hand 24/7 who are like family to help us however we ask and provide for our physical care.

My part of the deal was to figure out how the house would be automated. All of the hardware was readily available but I couldn't find any master control system, much less one that would be accessible to me as my disease progressed. The 21st century had arrived for everyone else but the environmental control for the disabled was stuck in the 20th century. I am happy to say that is no longer the case.

While my home was under construction, I designed what I thought would be the perfect environmental control system and hired a great company to build it. Barry funded the custom-built automation system specifically for the disabled called PEAC. Anything that runs on electricity can be controlled with the movement of my eyes or even my brainwaves. I use it all day every day and the freedom and independence it provides is beyond words.

With the automation system, each individual in my house has complete control of his environment. I have 100% access to my home theater on a single remote. I'm able to turn off or dim the lights, lower the window shade, and watch TV or a movie. If it's warm, I'm able to turn on a fan, the air conditioning, or both. I have full control of the HVAC. If the movie isn't streaming and I need someone to put in a DVD, I can use PEAC to call for assistance. I can open and close the door to my room and my house. I can call for the elevator and select the floor. All of this, I can accomplish with only my eyes using my computer mounted to my wheelchair.

Because of the design, there is nothing to install on any wheelchair or on the computer. The only requirement is a wireless signal and a browser, so you could even use an iPhone. It's the perfect solution. It's very intuitive to use and everyone is able to teach themselves. So, the 21st century has finally arrived for the disabled. Now, all we have to do is implement it.

In our society, this kind of automation should be standard equipment in long-term care facilities caring for the physically disabled. I have founded the ALS Residence Initiative (ALSRI) to promote the use of technology in other long-term care facilities and construction of homes like mine. To learn more about PEAC, visit www.PEACpc.com. For more information about ALSRI, visit www.ALSRI.org. ALS does not have to be fatal anymore. Until medical proves otherwise, technology IS the cure.

Steve Saling lives in the Steve Saling ALS Residence, a home within the Leonard Florence Center for Living in Chelsea, Mass., near Boston.

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