telehealth technologies, in-home sensors, a medication dispenser, and a personal emergency response system with automatic fall detection to care for a person recovering from a stroke and relieve the demands on caregivers. The idea behind the movie, said Alwan, was to stimulate strategic partnerships to make these technologies and their widespread adoption a reality.

THE LEONARD FLORENCE CENTER FOR LIVING

Steve Saling

Leonard Florence Center for Living

Steve Saling was diagnosed with ALS in 2006, when he was 38. Given a life expectancy of 3 to 5 years, he decided to change how ALS patients live their lives. He teamed up with the chief executive officer of the Chelsea Jewish Foundation, Barry Berman, and together they designed and built the award-winning Leonard Florence Center for Living.5 The residences within the center are fully automated to provide unprecedented levels of independence and productivity. As cofounder of the ALS Residence Initiative, Saling is working to replicate the residences around the country. Recently he arranged a tour of the center for Steve Gleason, a former professional football player who was diagnosed with ALS. As a result, a second ALS residence is scheduled to open in New Orleans.

Saling’s exclusive means of communication for the past 3 years has been a software program called Dasher, which enables him to control a computer with a silver dot on his glasses. For the workshop, he composed a presentation that he played for the participants:

You may think this computer voice is sometimes difficult to understand, but I am sure you will find it easier to understand than my southern accent. I grew up just outside Atlanta and lived there until 7 years ago. I went to college at Auburn University to become a landscape architect. My work focused on designing public spaces like public parks and urban spaces. My specialty was in designing places that are fully accessible for people with disabilities. So the irony never escapes me that I am now a direct beneficiary of my previous professional work. When I was diagnosed just over 6 years ago, I had researched ALS to know that in a few years I would be totally paralyzed, unable to speak, and maybe unable to breathe. I was told that it was invariably fatal, with an average lifespan of 3 to 5 years after diagnosis. However, I knew that technology existed that would keep me alive pretty much as long as I wanted. I didn’t yet understand why someone would choose death over needing a ventilator to breathe for them. Instead of being filled with grief because of my doctor’s grim prognosis, I took it as a challenge and something to be proven wrong.

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5For more information, see http://www.leonardflorencecenter.org.



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