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| Summary of the
May 2008 Program "A WALK DOWN MEMORY LANE (And A Small Step Into the Future)" The North Central Florida Post Polio Support Group was treated to a host of memories this past May 18th, the 18th anniversary of the founding of our support group’s chapter. Carolyn Raville and Lynda Knight shared reminiscences of the past 18 years. In her introduction, Carolyn told us how she met Dr. Burton W. Marsh when she fell in a parking lot in Ocala in 1989 and went to him since he was the only doctor in Marion County at that time familiar with post polio syndrome. When Dr. Marsh discovered that Carolyn had founded a support group in Miami, where she lived before she and her husband, Jerry, moved to Dunellon, he encouraged her to start a Marion County support group. The group met in the Presbyterian Church in Dunellon and then moved to the rehabilitation center at Timber Ridge before finding its home in the Collins Resource Center. When Carolyn met Lynda Knight, the Executive Director of the March of Dimes, North Central Florida Chapter, in September of 1990, Lynda had the group listed with the MOD, making a grant possible to help with the mailing of the Polio Post News. The newsletter was run off at a local church. Carolyn described how she first attended seminars and health forums and made it a point to introduce herself to doctors, and educating them about post polio syndrome. Eventually, Carolyn held her first seminar on PPS entitled "Post Polio Syndrome: What is it?" Happily, it was a great success. Other seminars followed with the assistance of many physicians, including Burton W. Marsh (MD), Jacquelin Perry (MD), Richard Owen (MD), Selma Calmes (MD) Augusta Alba (MD), Gudni Thorsteinsson (MD), Richard L. Bruno (PhD), and many others, including the late Anne C. Gawne (MD), who was Director of the Post-Polio Clinic at Roosevelt Warm Springs Institute for Rehabilitation, and a great source of inspiration. In 1995, Andrea Behrman (PT, PhD) formed an annual lab at the University of Florida so physical therapy students could learn from and become familiar with polio survivors. The North Central Florida Post-Polio Support Group was there from the beginning, giving the students invaluable information and hands-on experience. Lynda Knight of the March of Dimes presented a short film reviewing the past 60 years of the MOD. Lynda has attended all of our events from the very beginning. She discussed our support group and told us that she and the March of Dimes feel ours is the leading support group in the country with the best newsletter because of the encouragement it offers along with constant and up-to-date PPS information and related articles of interest for polio survivors all over the world. She went on to tell about how the March of Dimes was founded in 1938 by President Roosevelt, himself a polio victim. Through research and dedication, a vaccine was developed in 17 short years through the work of Dr. Jonas Salk. Yet President Roosevelt’s passion went beyond his need to eradicate polio. He was extremely compassionate toward children. With Roosevelt’s love of children in mind, the March of Dimes discussed what should be done with the organization after the "polio cure" was found; it was decided the best way to honor his memory was to turn their efforts toward helping children in their fight against birth defects. But while the March of Dimes never turned its back on polio, it never suspected that this thing we would come to know as "post polio syndrome" would begin to haunt us. Had the March of Dimes closed their doors in 1958 with the development of the Salk vaccine, over 525,000 premature babies born every year would not have had the hope for survival that they have today. When Steve McMahan, web administrator of our website, PostPolioSupport.com, and the "layout specialist" of the Polio Post News came to the podium, he brought us up to date on future plans for our website and newsletter. He and Carolyn Raville are working together to build up a network of available physical therapists throughout the state of Florida who are familiar with post polio syndrome. The idea is to create pages on our website for those who are looking for help in their area, first concentrating on Florida, then the United States, then… you guessed it… THE WORLD! (We’ll discuss accessibility to the Universe in a later issue.) Steve also had some comments on hospitalists. A hospitalist, according to the article, "Hospitalists: Slowly Accepted, Fast-Growing of the Scene" (elsewhere in this issue) "is a hospital-based specialist physician who cares for patients while they are hospitalized. At the time of hospital discharge, the patients return to the care of their out-patient physician." Steve warns that while coordination between the hospitalist and your personal physician should be seamless and an improvement in medical service, there is a major downside: Simply put, your physician knows you; your hospitalist doesn’t. And while the hospitalist may have all of your medical stats, he or she probably hasn’t a clue to your personality or those medical quirks not generally addressed in a medical file. This can cause unnecessary time delays as well as incorrect treatment. As an example, Steve points out that he, a layman, had to explain to a hospitalist that "dementia" is multifaceted. During his father’s last stay at a local hospital, the hospitalist assumed Steve’s father was "out of it" until Steve demonstrated to the hospitalist that his father was perfectly able to understand and that his usual sense of humor was not only intact, but still creative. "Dementia", yes; but "out of it", no. Mr. McMahan’s own physicians all knew what the hospitalist did not. Steve’s advice: While the concept of the hospitalist is a good one, it still needs a lot of work. Physicians need to find a way to share the personal side of the patient if they are to be successful. Otherwise, they will never get past being just another link in the chain of medical bureaucracy. Talk to your personal physician about hospitalists and what you should expect if you or a member of your family faces a trip to the hospital… and don’t wait until it’s too late! (Carolyn has said that she plans to ask one of the hospitalists to talk with us in a future program.) James Pott, an ADA consultant, concluded the program, discussing problems within our community in areas that don’t meet federal ADA guidelines. The American Disabilities Act was established in 1990 and all new businesses are required to meet their guidelines. Mr. Pott explained how the ADA proceeds when a complaint is made, with the plaintiff first contacting an agent (or "consultant"), who goes to a business and does a report. Then a lawyer, certified in Federal Court, takes the report to a federal judge. The judge issues a "Rule 34", and the lawyer sends a draft of the violation to the business. The business is then given 20 days to come up with a plan to address the violation. Once the plaintiff makes the complaint, he is finished and no longer involved in the process; he does not receive any compensation from the business regarding the violation. The lawyer will be compensated for his participation.
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