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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. |
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**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
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*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 |
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*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. |
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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. |
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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 |
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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. |
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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. |
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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/ |
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Rolling Rat |
Rolling Rat's collection of links
and good ideas . Still solid and reliable, and a lot of fun. |
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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. |
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*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. . |
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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). |
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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 |
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National Institute of HEALTH |
Info on new free MedLine searches |
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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 |
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Polio Connection of America
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Research Home of Dr. Marinos
Dalakas. Polio Connection of America: Polio Survivors looking for Polio
Survivors to help Polio Survivors |
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PPS New Health Problems Results |
See results of the Post Polio
Syndrome new health problems survey (INTRO & ONGOING) |
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PPS New Health Problems Survey |
Take the Post Polio Syndrome new
health problems survey. |
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Recent Post-Polio Articles |
List of recent articles on PPS.
Kept up to date well. |
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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. |