December 1, 2010 was the first day of Hanukkah and marked the day that Patrick O'Brien made his long awaited move to the Steve Saling ALS Residence in Chelsea, Massachusetts. Like many people living with ALS and on a ventilator, Patrick lived in a chronic hospital where he lived in a bed, going outside perhaps a couple of times a year. This wasn't a bad facility - they provided for his physical needs by keeping him alive. But as is too often the case, hospital staffing cannot provide the type of compassionate, personal care that you would expect for yourself or a loved one. Patrick hadn't experienced a shower or felt the sun on his face in years. Instead, he decorated his ceiling with artificial foliage and made the best he could out of his career as a film director. This clip is an excerpt, set to music, of what will be a feature length movie to be released at the Sundance Film Festival. It documents his move to America's first fully automated, skilled service residence specializing in ALS. In his new home, Patrick has the option to get out of bed every day, has regular showers, and has total environmental control through a custom designed automation system accessible to even the nearly locked-in. Unlike the place he left, where he was a patient and the only one with ALS, in the ALS Residence, he is part of a family living in a home with staff specialized in his condition with housemates who share his diagnosis.
Life is good!