2016 Update
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in my own words ---->>>
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Friday, March 11, 2016 is the 6 year anniversary of the opening of the Steve Saling ALS Residence so it is a good time to reflect on what life has become and what I dare dream about for the future. I was 38 when I was diagnosed with ALS almost 10 years ago. I have my buddy Pete Frates to thank for sparking the Ice Bucket Challenge 2 summers ago so I don't have to explain what ALS is anymore. My progression was fairly typical in the first 5 years but has plateaued in the last 5. My neck is weak but if I adjust my power wheelchair to just the right angle, I find a sweet spot where my head is still pretty mobile. The movement of my head is everything to me. I drive and adjust my wheelchair with my head and I use my head to get full access to my computer. I have a little reflective dot on the bridge of my glasses that is my computer mouse. I have an array of switches around my head that allow me to drive with great precision and accuracy. Without technology, I am completely dependent and helpless but when in my wheelchair with my computer in front of me, I am the master of my domain. Besides head mobility, my other blessing is that I can still breathe without difficulty. The strength of my breathing is much weaker but breathing is not difficult, even flat on my back. I am fortunate to be very comfortable in my wheelchair because I am in my chair from 16-18 hours a day.
Before my diagnosis, I never could understand how a person so disabled could be content and happy. Now, I wonder why people waste time being depressed about something they cannot change. I'd rather concern myself with where I can make a difference. When I was diagnosed, my main concern was for how my family would react. Everything online described ALS as a death sentence but I wanted them to know with as much certainty as I had that I would embrace technology wholeheartedly and survive ALS. It was very important for me that my parents truly believed that I could be content and happy. I promised to be at their funeral, not the other way around. I instinctively knew that I would adapt.
It was a month after my diagnosis when I learned that I was a father. As if I needed any more incentive, I was determined to watch my son grow up. I wanted to set a good example and have him be proud of his Dad instead of embarrassed. As fate would have it, I met Barry Berman and quickly discovered that we shared a dream to redefine what it means to live with ALS. Barry wanted to build a revolutionary new kind of nursing home called a GreenHouse and knew that he could profoundly change lives. I am fortunate that he had an idea of ALS and came to an ALS symposium that I had gone to also shortly after my diagnosis to explore long term care options. Selfishly, I asked that any ALS Residence would have to be fully automated and vent ready. Barry didn't bat an eye and agreed. The rest is history and 6 years later, I am living in the house of my dreams where my entire environment is controlled with almost imperceptible movements of my head. I no longer give any thought to surviving ALS. I have the luxury of getting to take that for granted. With Stephen Hawking as my inspiration and family and friends as motivation, I am determined to die of old age 30+ years from now.
Well before I moved into the ALS Residence, Barry and I recognized that we would be the only automated ALS Residence in the world. Disturbingly, the only options for those who cannot live at home were in traditional nursing homes or chronic hospitals where people are left in bed 24/7/365, consigned to sponge baths and toileting in the bed they will rarely leave again. I asked Barry if there was anything we could do to encourage replication of our project. Since we opened 6 years ago, we have given many hundred tours to thousands of people from a dozen or more different countries including Governors, Senators, Representatives, and even a personal message from Stephen Hawking, promoting the GreenHouse concept in general and the ALS Residence in particular. Barry and I founded the ALS Residence Initiative or ALSRI, to be an inspiration and resource to other mission driven, non-profit nursing homes across America and the world. We are invited to speak at international ALS conferences, national conventions of nursing home tradeshows, technology tradeshows, and more. I have visited and spoken to students at high schools dozens of times. All of this to educate people and declare that until medicine proves otherwise, technology IS the cure.
I never expected that finding others with the dedication and passion to profoundly change lives would be easy but it is far more difficult than I thought. It is a pretty tough sell to tell an organization that they should open a residence for a medically complex, labor intensive population who will mostly be covered with the lowest form of reimbursement - Medicaid. After 5 years trying, there is now an ALS Residence in New Orleans and Dahlonega, Georgia. I am excited that more pALS will have an option to live. It is great news but is not nearly enough and neither location is up to GreenHouse standards. But it is progress.
What I am really excited about is that through my website, www.ALSRI.org, I was able to connect with the family of Dapper McDonald who were determined to establish an ALS Residence for New York pALS. We searched high and low for a compassionate nursing home willing to commit to the project. We were not successful. Instead, they decided to pledge their resources to Barry Berman and the Leonard Florence Center for Living (LFCL) to open the Dapper McDonald ALS Residence in the same building with the Steve Saling ALS Residence. We know what it takes to be successful and return a quality of life to people who choose to live with the disease instead of die of it. You can't imagine the satisfaction of expanding the options for pALS. And it is Barry that makes it all possible. I have never met someone more compassionate and committed. He has really changed the prognosis of ALS from an invariably fatal disease to just a chronic disability, albeit severe. The PEAC automation system that I designed for my house is currently being installed in the McDonald ALS Residence and will be fully operational by the April 3 dedication. We have doubled the number of pALS who have the good fortune of being able to maximize their freedom and independence and have incredible care. The LFCL probably has the largest number of pALS living under the same roof anywhere in the world!
The Dapper McDonald ALS Residence is a great accomplishment but there are still pALS living in horrible realities at long term care facilities all over the country. People like my friend Patrick O'Brien are forced to live an excruciating life in places that don't make quality of life a priority. They aren't necessarily evil but do not understand ALS or are given the man power to provide adequate care. A lot of these problems could be corrected with proper training. Unfortunately, there are no training resources available. Recognizing the problem is the first step to fixing it so I came up with an idea to produce a series of short videos drawing on my experience of living the good life and drawing on Patrick's nightmare life in a traditional facility and was able to acquire a $15k grant to produce these videos. We may not be able to give everyone an ALS Residence yet but I feel like I can help them have more knowledgeable caregivers. One of the best days of my life was getting Patrick to move in as my housemate over 5 years ago. He was able to complete his multiple award winning documentary about his life with ALS including the glorious day he moved here. The movie is called TransFatty Lives and is highly recommended. Life really is good.
I will continue pushing for more ALS Residences across America and internationally. It gives me a purpose in life and brings me a lot of joy. There is another house in the LFCL that is prewired for the PEAC automation system so I will look for another angel like the McDonald family to make possible a 3rd ALS Residence to expand my pALS family. I have never felt more satisfied or fulfilled. The future is bright indeed.
Before my diagnosis, I never could understand how a person so disabled could be content and happy. Now, I wonder why people waste time being depressed about something they cannot change. I'd rather concern myself with where I can make a difference. When I was diagnosed, my main concern was for how my family would react. Everything online described ALS as a death sentence but I wanted them to know with as much certainty as I had that I would embrace technology wholeheartedly and survive ALS. It was very important for me that my parents truly believed that I could be content and happy. I promised to be at their funeral, not the other way around. I instinctively knew that I would adapt.
It was a month after my diagnosis when I learned that I was a father. As if I needed any more incentive, I was determined to watch my son grow up. I wanted to set a good example and have him be proud of his Dad instead of embarrassed. As fate would have it, I met Barry Berman and quickly discovered that we shared a dream to redefine what it means to live with ALS. Barry wanted to build a revolutionary new kind of nursing home called a GreenHouse and knew that he could profoundly change lives. I am fortunate that he had an idea of ALS and came to an ALS symposium that I had gone to also shortly after my diagnosis to explore long term care options. Selfishly, I asked that any ALS Residence would have to be fully automated and vent ready. Barry didn't bat an eye and agreed. The rest is history and 6 years later, I am living in the house of my dreams where my entire environment is controlled with almost imperceptible movements of my head. I no longer give any thought to surviving ALS. I have the luxury of getting to take that for granted. With Stephen Hawking as my inspiration and family and friends as motivation, I am determined to die of old age 30+ years from now.
Well before I moved into the ALS Residence, Barry and I recognized that we would be the only automated ALS Residence in the world. Disturbingly, the only options for those who cannot live at home were in traditional nursing homes or chronic hospitals where people are left in bed 24/7/365, consigned to sponge baths and toileting in the bed they will rarely leave again. I asked Barry if there was anything we could do to encourage replication of our project. Since we opened 6 years ago, we have given many hundred tours to thousands of people from a dozen or more different countries including Governors, Senators, Representatives, and even a personal message from Stephen Hawking, promoting the GreenHouse concept in general and the ALS Residence in particular. Barry and I founded the ALS Residence Initiative or ALSRI, to be an inspiration and resource to other mission driven, non-profit nursing homes across America and the world. We are invited to speak at international ALS conferences, national conventions of nursing home tradeshows, technology tradeshows, and more. I have visited and spoken to students at high schools dozens of times. All of this to educate people and declare that until medicine proves otherwise, technology IS the cure.
I never expected that finding others with the dedication and passion to profoundly change lives would be easy but it is far more difficult than I thought. It is a pretty tough sell to tell an organization that they should open a residence for a medically complex, labor intensive population who will mostly be covered with the lowest form of reimbursement - Medicaid. After 5 years trying, there is now an ALS Residence in New Orleans and Dahlonega, Georgia. I am excited that more pALS will have an option to live. It is great news but is not nearly enough and neither location is up to GreenHouse standards. But it is progress.
What I am really excited about is that through my website, www.ALSRI.org, I was able to connect with the family of Dapper McDonald who were determined to establish an ALS Residence for New York pALS. We searched high and low for a compassionate nursing home willing to commit to the project. We were not successful. Instead, they decided to pledge their resources to Barry Berman and the Leonard Florence Center for Living (LFCL) to open the Dapper McDonald ALS Residence in the same building with the Steve Saling ALS Residence. We know what it takes to be successful and return a quality of life to people who choose to live with the disease instead of die of it. You can't imagine the satisfaction of expanding the options for pALS. And it is Barry that makes it all possible. I have never met someone more compassionate and committed. He has really changed the prognosis of ALS from an invariably fatal disease to just a chronic disability, albeit severe. The PEAC automation system that I designed for my house is currently being installed in the McDonald ALS Residence and will be fully operational by the April 3 dedication. We have doubled the number of pALS who have the good fortune of being able to maximize their freedom and independence and have incredible care. The LFCL probably has the largest number of pALS living under the same roof anywhere in the world!
The Dapper McDonald ALS Residence is a great accomplishment but there are still pALS living in horrible realities at long term care facilities all over the country. People like my friend Patrick O'Brien are forced to live an excruciating life in places that don't make quality of life a priority. They aren't necessarily evil but do not understand ALS or are given the man power to provide adequate care. A lot of these problems could be corrected with proper training. Unfortunately, there are no training resources available. Recognizing the problem is the first step to fixing it so I came up with an idea to produce a series of short videos drawing on my experience of living the good life and drawing on Patrick's nightmare life in a traditional facility and was able to acquire a $15k grant to produce these videos. We may not be able to give everyone an ALS Residence yet but I feel like I can help them have more knowledgeable caregivers. One of the best days of my life was getting Patrick to move in as my housemate over 5 years ago. He was able to complete his multiple award winning documentary about his life with ALS including the glorious day he moved here. The movie is called TransFatty Lives and is highly recommended. Life really is good.
I will continue pushing for more ALS Residences across America and internationally. It gives me a purpose in life and brings me a lot of joy. There is another house in the LFCL that is prewired for the PEAC automation system so I will look for another angel like the McDonald family to make possible a 3rd ALS Residence to expand my pALS family. I have never felt more satisfied or fulfilled. The future is bright indeed.
