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PPS Reference

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Up First Do No Harm PPS Intro PPS Reference By Date By Symptoms

Listed here are the major resources with a wide range of information, frequent updates and reliable maintenance. We have not tried to include every site everywhere and, in fact do not include some excellent sites with narrower scope or less frequent updates. We intend no disrespect; it's just that our site has limited space and we are focusing more on inclusiveness of the research publications than the websites, support groups, mailing lists, etc.. E-mail us if you believe we should add someone. We probably will follow your advice. Under Construction

  GENERAL REFERENCE A few well-maintained, up-to-date sites that contain comprehensive sets of library materials for ongoing reference overview. Each has a slightly different slant. Our reference list is currently limited to no more than 12 sites, and will undoubtedly change over time. Look for overview and introductory material on PPS Intro.  Links to medical research sites are in Research Reference.  
**Lincolnshire Post Polio Network *Starting Point: Has copy of good "What is PPS?" by Tom Walter. Chris Salter and the folks at Lincolnshire Post-Polio Network in the UK have put up an exceptional Post-Polio Information Web Site for Polio Survivors and Medical Professionals. Always seems up-to- date with the latest info. The rapidly expanding online library offers full text versions of over 60 articles and research papers. Complete set of internet links, including clinics and Research facilities in US, Canada and UK. Good Medical Professionals education. Search engine. Well Organized.   Be sure to see Lincolnshire PPS Booklist and Dr. Henry Writes., among other things.linpolio@legend.co.uk
*Ernie Wollring's Post Polio Site *Starting Point: Ernie Wollring's peer oriented central repository site for resource info for Post Polio Syndrome (PPS). One of the most complete peer info sites since it includes materials direct from mail lists. Updated frequently. Includes info on forums, chat groups, New Stuff (meetings, new books and articles, etc) , Short Takes (links to short descriptions of PPS), Internet Resources, International & National, Regional and Local Organizations. Info presented in MS Word form. Be sure to look at "Additional Resources" section, too, for short notes and less mainstream sites.E-mail
*Polio Survivors Page  *Starting Point: Larry White & Tom Dempsey. Home of the PPS Dragon. The Polio Survivors' Page, the first PPS site and still one of the best, thanks to Tom's hard work over the years and more recently the assistance of David Brock, has continued to be one of the first ports of call for Polio Survivors in their quest for information and support. Now on the Lincolnshire Site.
Post-Polio Central *Starting Point: Very Complete information presented in alphabetical order, with new items highlighted. Was originally the Hot Springs Post Polio Site. Now maintained by Post-Polio Med.
International Polio Network Coordinated by Gazette International Networking Institute (G.I.N.I.), the International Polio Network disseminates information and organizes conferences about the late effects of polio, encourages research, and promotes networking. I.P.N. publishes the quarterly Polio Network News and the annual Post-Polio Directory of Doctors and Clinics.parline@nbnet.nb.ca
Post Polio Mailing Lists There are 5 PPS related lists. If you need one for support, social or chat, you'll find it; if you are only interested in information, either medical, adaptations, coping or how tos, you'll find it too. They are all listed there, with descriptions and subscription info.
Post Polio Med List Page  Post Polio Med list web page. Maintains archives of all items posted to the listserver that is excellent source of "word of mouth" info. Post-Polio-Med is a forum for questions and answers to and from post-polio syndrome researchers, physicians and other post-polio syndrome medical professionals, polio survivors, family, friends, students and others who are interested in post-polio syndrome. This includes, but is not limited to: questions, answers and information about post-polio syndrome research, clinical issues, clinical trials and current treatment practices.. Maintains a "recent articles list" cited separately here.
Grace Young's Energy Conservation Web Page A polio survivor and occupational therapist with experience teaching former polio patients gives a monthly tip to those who suffer from, or are at risk of, post-polio syndrome. A resource list and product information are included.
Found at: http://www.geocities.com/HotSprings/4713/
Rolling Rat Rolling Rat's collection of links and good ideas . Still solid and reliable, and a lot of fun.
Tom Dempsey's Post Polio Site Tom Dempsey's excellent resource area.Tom Lives in Seattle. He was responsible for the first PPS internet site.
  *RESEARCH REFERENCE Sites found here are the homes of the researchers themselves or are focused primarily on making copies of research available online. Some of the reference sites also have extensive medical research libraries. Research here has primary focus on causes and treatments. .  
Harvest Center Post Polio site Drs. Bruno and Frick site on the Web. Includes library of articles for downloading. All of Dr. Bruno's (one of most prolific writers and researchers).
Medscape This copyrighted site is provided by the MEDSCAPE service -- and requires that you "sign up" or "subscribe" before access is allowed. But there's no cost or obligation to becoming  a member. If you haven't already signed up, before going to the articles, go to this page
National Institute of HEALTH Info on new free MedLine searches
NIH: volunteer for a polio study NIH funds more PPS research than anyone else. Look here for info or if you want to volunteer for a study
Polio Connection of America 
               
Research Home of Dr. Marinos Dalakas. Polio Connection of America:  Polio Survivors looking for Polio Survivors to help Polio Survivors
PPS New Health Problems Results See results of the Post Polio Syndrome new health problems survey (INTRO & ONGOING)
PPS New Health Problems Survey Take the Post Polio Syndrome new health problems survey.
Recent Post-Polio Articles List of recent articles on PPS. Kept up to date well.
The Hassles of Living with Post-Polio: Some Survival Strategies In 1988 I surveyed over 300 polio survivors  I asked them to describe the treatments that had helped or not helped, reduce their symptoms, changes they had made in their lifestyles in their attempts to cope with post-polio, and the advice they would give to someone who developed post-polio symptoms. Those answers yielded a wide range of coping strategies.

Five years later   I followed up those respondents who had post-polio syndrome. (These people were identified using the criteria developed by American researchers  which have been shown to be a valid way of detecting people whom physicians diagnose as having the syndrome). Of the 217 people who were mailed a follow-up questionnaire 176 (81%) completed them. The second survey questionnaire systematically listed the numerous coping strategies that respondents had identified previously and asked survivors whether they had used each strategy. If they had adopted it, they were asked to rate it as 'very helpful', 'some help' or 'no help' in relieving physical symptoms or reducing the personal problems of post-polio.