As you know, we like to just check in with our members to see how you’re doing as a person, not just a patient. Today, we have a very special interview with one of our earliest members with ALS, SmoothS. We sat down with SmoothS to talk about his recent building of the first ever ALS rehabilitation center – the Leonard Florence Center for Living, (LFCL) – which opened in November of 2010. Along with the interview, below is a video of the grand opening event. Have a good weekend!
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(Amy) Steve this rehab center rocks! Can you tell me what inspired you to start this project?
(SmoothS) That easy; it is the horrible conditions in which a vented pALS is forced to live if you have no option to stay home. After my diagnosis, I was doing some research on my residential options when my care became more than my mother could handle alone. What I found was not pretty. There was nothing except for run-down nursing homes and chronic hospitals. I was discussing the problem with my friend Ron Miller and we tossed around the idea of a pALS residential co-op. I was at an ALS symposium in the spring of 2007 researching our idea when some people overhead my questions. They introduced me to Barry Berman who explained that he was considering building an ALS specialty residence with his proposed Leonard Florence Center for Living. It was important to me that an ALS Residence be fully automated and offer vent support. He agreed that it would and a beautiful relationship was born.The amazing thing is that we designed and built it in less than 3 years.
(Amy)What was the toughest challenge in building this facility? What are you most proud of?
(SmoothS)It has been one challenge after another but none of them proved exceptionally difficult to solve. Probably the biggest challenge was how to provide universal environmental control from a mobile wheelchair. I knew what I wanted to have but found that it didn’t exist. I found a programmer of home automation software and contracted him to build a comprehensive package based on my design. The system is now called PEAC (www.PEACpc.com) and is already being marketed to other health care facilities and we plan to also make a consumer product. I hope and expect that it will revolutionize the independence for the physically disabled.
(Amy) At the grand opening you said that this was the first of hopefully many rehab centers that you want to be involved with, do you know where the next one is going to be?
(SmoothS) We are having conversations with several cities such as Atlanta and Chicago. I am exploring several options to the model here but insist that any variations still be fully automated and provide vent support to anyone that needs it. I am actively marketing the project to several States and welcome any leads.
(Amy) You are a dedicated member of the ALS community online with PatientsLikeMe and offline with the rehab center, What has that meant to you, to be involved in the lives of fo many people on and offline?
(SmoothS) My work on the ALS Residence has been the most satisfying of my life. Obviously, because I will benefit from the project in a very personal way but I also get to help others at the same time. This would be the perfect job for me even without ALS. I get to utilize my life skills to continue being a productive and involved member of society. That is a lot more than many healthy people can say. I know that the ALS Residence Initiative keeps me focused on what I can do. Similarly, PatientsLikeMe is forum where everyone is equal. There is no disability in cyberspace. My connections to others is what keeps me going so ALSRI and PLM help me much more than I could help other people. I am happy that others may find help or inspiration in my efforts. Life is good.