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This is here and now ALS Amyotrophic lateral sclerosis is an especially cruel and debilitating neurodegenerative disease , people who are diagnosed with it often succumb within 2 to 5 years there. A group of people with ALS living at a center outside Boston and they’re living longer and more meaningful lives than ever thought possible . The place is the Leonard Florence center for a living . It’s a skilled nursing facility in a contemporary brick building along a hillside in Chelsea Massachusetts inside something revolutionary is happening thanks to 2 men who make an unlikely pair first Barry Berman is a gentle avuncular 64-year-old who comes to work in a pull over in a tie and loves what he does , he runs the center .
I think I have the best job in the world because I go to work every day and my mission is just to try to make people have a better quality of life.
The other half of the pair is 49-year-old Steve sailing a self proclaimed rebel with long blonde to share and a penchant for T-shirts and Burke stocks he lives at the center because he has ALS.
I was told my life expectancy was between 3 and 5 years I’ve always had a problem with authority. I don’t like to accept what makes no sense to me .
Sailing was diagnosed 12 years ago. His arms and legs are paralyzed now he communicates through a computer because ALS took away his voice he uses a tiny mouse a metallic circle on the bridge of his glasses to point words and letters scrolling rapid-fire on a computer screen . The computer is mounted to his wheelchair . It takes a few minutes for him to piece together a sentence sailing is blunt about his condition .
I am completely dependent on others , and will be for the rest of my life I required help if I want to have my position changed at night. I cannot scratch my head or rub my eyes even one an eyelash gets in there .
Sailing used to work as a landscape architect. In fact he specialized in making public spaces accessible for the disabled , including the Rose Kennedy Greenway in Boston when he was diagnosed with ALS . He had a newborn son sailing it always liked to noodle around with technology , a real Inspector Gadget , he says that passion his need for long term nursing care and Barry Berman is a vision of nursing care converged Berman recalls when the 2 were introduced at an ALS conference in Boston .
From this point on , I do believe a higher power Jeff took over and made this , this happened.
Berman was on a mission to re conceptualize the design of a traditional nursing home to make it more like a residents that happens to have state of the art nursing care he envisioned private bedrooms opening up to a communal living area. It would be nonprofit Berman , says Steve sailing was all about customizing technology for people with disabilities .
And Steve single handedly designed a household where he would live the rest of his life and have all the technology and the care that he would need so he could lead an independent life.
The place is wired with computers that help residents do things their hands camp do sailing says the individual components of the system are off the shelf stuff and just need WiFi in a browser. He worked with the home automation software company to tailor the system for people with disabilities .
Sailing leads us on a tour from his wheelchair.
This is the bakery and cafe. We have a full time Baker who makes amazing home made fresh pastry daily . There is a 15 foot screen that drops from the ceiling for movies and events like the Super Bowl .
Down the hall. There’s a chapel with stained glass windows , further down , there’s a day spa with a massage therapist people with ALS can still feel the touch of a hand sailing moves his head ever so slightly to aim at an infra-red.on the wall that lets some call for the elevator .
He selects the 3rd floor we step out to a sunny foyer. The floor is called the Steve sailing ALS residents . It’s one of 2 ALS floors each has 10 rooms there a mailbox and a doorbell . No need to ring it though sailing opens the door with a signal to his computer .
Welcome to my home by looking you would never know that this is a nursing home. We are in the living room now complete with that electric fireplace .
There is a pristine kitchen and long would block dining table residents create their own menus , even if they’re on a feeding tube a sailing is and when he wants to drink sailing suburban man he takes a shot of Maker’s Mark through the tube. He leads us to his bedroom .
I can’t control the lights the window shade the thermostat the TV and home theater and any electrical device like my fan.
He turned on the TV. ESPN . There are dozens of books and CDs , including his favorite Stones album sticky fingers the walls are raspberry his mom painted them they’re covered with framed family photos and a huge so realistic painting he wants me . There’s also a private bathroom with a ceiling lived there with the help of staff carry sailing from his wheelchair to the shower or toilet .
I even have the remote controlled be day to wash and dry my bum. So that’s how I maintain that independence .
They have a human being if is entitled to good care and to live with dignity.
Again CEO Barry Berman.
Many of our residents when they’ve had been admitted here hadn’t experienced a shower in several years. We take a ventilator . Residents in the shower and give and people have showers that’s human dignity that every human being should have warm water cascading over their body that’s not innovative , but when we give someone on a ventilator a shower it takes 4 people .
Many of the residents here with ALS have lived well beyond their prognosis Barry Berman believes that’s partly because of the quality of the care he says there are 2 or 3 times as many nurses and aides on duty than in a typical nursing home and they know the residents so well they can immediately spot an infection and keep them out of the emergency room.
Because of that week some time to go 6 months we could go a year without an empty bed and when you average 2 or 3 calls a week from desperate people throughout the country and around the world today. It’s really heartbreaking . We weren’t prepared for people living if flying at their living here .
So that’s clearly a blessing but it also increases the demand for beds that you don’t have open.
Exactly. At one time . I just noticed that admissions person was in tears . And I said , what’s the matter . What did something happen , she said . I just can’t take V They Left calls .
It costs the center $50,000 a year to take care of each resident with ALS that’s after Medicaid in nearly all of them are on Medicaid Barry Berman goal is to replicate this home , but that won’t happen without more philanthropy. As for Steve sailing he can’t wait for the day when everyone has access to this kind of technology and care for now he savers with he and Berman have created .
The most satisfying part of my day would have to be towards the end of the day , especially one I have a particularly productive day when I can Medicaid with cannabis kick my feet up and watch a good movie in my home theater. It is relaxing and very satisfying .
He says. Life is good for photos of Steve sailing in the ALS residents at the Leonard Florence center for living go to our website here now.org .
There was a memorial service in Lake Oswego , Oregon. This past weekend for a woman . We want to remember now her name was Kathy Krieger she died suddenly this past summer and she left behind a legacy far away in Morocco , not just anywhere in walk . She was a hit .
Kathy Krieger defeated the odds and created Rick’s Cafe in Casablanca , Morocco , there never was a despite the iconic place in the iconic film Creek.