Last update 1/15/2012
This is a web version of a periodic post about how the Post-Polio Internet resources are organized, and about how to access the information that's available. For additions or corrections, drop me a note at PPSRL@wi.rr.com
A good way to get information is to join one of the forums and simply ask for the information that you need. Don't be hesitant to post questions or comments. If you need information, would like to share an experience, or would just like to say Hi, that's what this is all about. There are a lot of knowledgeable and friendly folks around here.
Ernie
New Stuff
Short
Takes
Internet
Resources
National/International
Organizations
Health Care
Professional and Support Group Locators
Regional/Local
Organizations
Be sure to visit the Forums page, the Additional Resource page, and the Archive page.
Short Takes - Brief (or relatively so) descriptions of PPS:
NINDS Website:
http://www.ninds.nih.gov/health_and_medical/disorders/post_polio_short.htm
-----
Connie Ingram's P.P.S in under Two Minutes:
http://www.i-sites.net/ppsrl/PPS_in_under_two_minutes
-----
Tom Walter's What is PPS at:
http://www.poliosurvivorsnetwork.org.uk/index.php?option=com_content&view=article&id=48&Itemid=141
-----
The following site gives diagnostic criteria for PPS and other
neuromuscular diseases. Check it out. It's worth a look:
http://www.neuro.wustl.edu/neuromuscular/motor.html#pps
Eddie
Internet WWW Information Resources:
Although The Polio Survivors' Page, created by Tom Dempsey, is no longer available, it deserves special recognition as being one of the first and best pages of PPS information on the Internet. Thanks Tom!
-----
Chris Salter and the folks at Lincolnshire Post-Polio Network have put up
an exceptional site. If you only surf to one place, this is it!
"The Lincolnshire Post-Polio Network (UK) announces its Post-Polio Information Web Site. This represents a major step in the provision of information regarding Post-Polio Syndrome for Polio Survivors and Medical Professionals in Lincolnshire and throughout the UK. Our rapidly expanding online library offers full text versions of articles and research papers."
http://www.poliosurvivorsnetwork.org.uk/index.php
-----
Subject UP! Dr. Bruno's Updated Web Site
From "marilynkcgw" <marilynkcgw@yahoo.com>
An old address
http://www.PostPolioInfo.com
but a brand new site designed by GrandSlamSolutions.com with:
Mia Farrow's POST-POLIO LETTER...
Information about getting Social Security Disability for PPS the 1st
time...
The Post-Polio Library, with the surgical and dental precautions
articles, plus something new:
The Post-Polio Sequelae "Advise and Consult" Program for treating
PPS at home and...
Random Harvest e-books, "Shareware for the mind!"
Please forward to your friends and neighbors.
-----
There is a list of recent medical articles on post-polio syndrome at:
http://i-sites.net/ppsma/medindx.html
-----
Post-Polio Syndrome Central has a huge number of links to Post-Polio
Syndrome related Internet information and support resources:
-----
Alan Dove has set up PICO, the Polio Information Center Online at:
http://microbiology.columbia.edu/pico/PICO.html
PICO is organized as a series of "chapters" on different subjects related to polio. They are extensively interlinked and also linked to relevant outside resources.
-----
The Home Page for "Polio Experience Network" is at:
-----
There is a Post Poliomyelitis Knowledge Base available at:
http://www.cs.umanitoba.ca/~mdonald/PPS1.html
-----
Subject: MEDLINEplus: Polio and Post-Polio Syndrome
http://www.nlm.nih.gov/medlineplus/polioandpostpoliosyndrome.html
National/International Organizations:
PolioToday.org is published by the Salk Institute for Biological Studies. The websitehttp://www.post-polio.org/don.html
-----
Subject A new website from PHI
From genereau@vbe.com
>From Joan Headley at PHI (Post-Polio Health International) in St.
Louis:
Polio Place
http://polioplace.org
an internet repository for medical and practical information,
historical records and artifacts, launched on January 30, the 129th
anniversary of Franklin D. Roosevelt's birth.
Polio Place looks at the past - not only the history of the disease,
but also the stories of its survivors. It examines the present from
the perspective of people around the world who are living with polio
and post-polio syndrome today.
Post-Polio Health International (PHI) developed Polio Place with the
generous support of the Roosevelt Warm Springs Foundation.
PHI is committed to reaching out to polio survivors and their
families, health professionals and policymakers, particularly in
countries where living independently and successfully as a polio
survivor is not a priority.
PHI invites survivors and health professionals worldwide to explore
this storehouse of information and let us know your needs, concerns
and successes.
Here's how to participate:
Polio survivors - Have you devised a unique way of doing something to
increase your independence? Have you created a simple device to
assist you? Can you write an essay on Living with Polio? Contact us.
Do you have a photograph, letter, newspaper article, etc., that tells
your polio story? Please visit the Artifacts area of the website, and
submit it.
Health Professionals and Researchers - Are there Medical Articles you
would recommend or articles you judge to be classic, seminal,
excellent overviews or longitudinal studies? Click on Contact and let
us know.
Historians and Authors - Do you have suggestions for additional
Collections of historical material or recommendations for additions
to the People section? Have you written a book that should be
included? Contact us.
Polio Place is a new additional website and an extension of our
mission to enhance the lives and independence of polio survivors
through education, advocacy, research and networking. Our other
trusted sources of online post-polio.org
and ventusers.org will continue.
-----
Health Care Professional and Support Group Locators:
International Polio Network (IPN) coordinated by Post-Polio Health International
http://www.post-polio.org/net/pdirhm.asp
-----
Post Polio Syndrome Resources State & Country Help Locator
http://ppsr.com/statelocator1.htm
-----
Physiatrists: American Academy of Physical Medicine and Rehabilitation
-----
Polio Experience Network's "Where Can I Find a Support Group?" page
http://www.polionet.org/support.htm
-------
Post Polio Syndrome Central
http://www.skally.net/ppsc/ppsc-s.html
Regional/Local Organizations:
Subject Rancho Los Amigos Post-Polio Support Group
From Richard Daggett <richarddaggett@CA.RR.COM>
Hi -
The Rancho Los Amigos Post-Polio Support Group has a new web site. The
address is: http:\\www.RanchoPPSG.com
Most of the support group's recent newsletters are posted on this site.
For copyright reasons, many of the newsletter are encrypted. You can
read them online, but you cannot print them or copy and paste passages.
If you need to print an article to share with friends or give to your
doctor, you can contact the support group at RanchoPPSG@hotmail.com and
permission to print can usually be arranged.
Let me know what you think of the support group's new web site.
Richard Daggett
-----
Subject Ohio Polio Network
From "Patrick Kelly" <pkelly03@sprynet.com>
The purpose of this organization is to increase the knowledge of
Post-Polio problems and remedies. We hope to add new members so we will be
able to grow and expand. We also want to have fun when we are together and
working on projects. By developing relationships and friendships, the
organization will become even stronger.
http://www.ohiopolionetwork.org/index.html
Thank you,
Patrick Kelly
Ohio Polio Network President
pkelly03@sprynet.com
-----
Subject Nebraska Polio Survivors Association
From patgrimes@alltel.net
NEBRASKA:
Marian Barnett, Executive Director
Nebraska Polio Survivors Association
PO Box 45139
Omaha, Ne. 68145-0139
phone 402-341-0710
website: ne-polio.org
email: mjbarnett@att.net
Subject:
TVPPSG polio group
From: Gerald Moore <gwmsr@HIWAAY.NET>
As webmaster I just posted an article
about wheelchairs and scooters written by one of the members of our
support group.
http://www.geocities.com/tvppsg/index.html
Wishing y'all a pain-free day.
Gerald
-----
Subject: New PPS support group
From: Sandra Parsons
<sandieangel53@HOTMAIL.COM>
Just to let anybody on this list who lives
in the UK know that we have a
new PPS support group operative in the
north-east of England. For
further information contact me at my e-mail
address.
http://www.PolioNet.org./POS.htm
-----
The Leicestershire Polio Network (UK) has a
web page at:
http://freespace.virgin.net/james.mcvay/
-----
The Ontario Canada March of Dimes hosts a
site which includes their newsletter by and for polio survivors at --
-----
The Distribution site for the Post Polio
Network of NSW (Australia) Newsletter is
http://www.post-polionetwork.org.au/
-----
Polio Quebec's website has moved
and been updated and expanded. It can now be found at
-----
The name, Saskatchewan Awareness of Post
Polio says it all. The aim of the association is to heighten awareness
and share information throughout the province, with 1) polio survivors,
and 2) medical professionals.
http://www.geocities.com/sapponline/
-----
Subject: live in Oregon?
From : Marsha in Texas
<marsha@ccms.net>
Goto ~~~> http://www.oregonseals.org/ Click on Programs/Services at left edge of screen, Wait, and then click on post polio support for OR PPS newsletter
-----
The North Central Florida Post-Polio
Support Group has a Web page at:
http://www.mfi.net/users/mcmahan/
-----
Hi All,
Yesterday I joined and attended my first meeting of the Polio Survivors of Oklahoma Association (PSOA), a post polio support group established in1985. From my vantage point of having lead an Easter Seals post polio support group in Wyoming, I was pleased and impressed with the group.
For the SJU archives, the 1998 group information is:
Polio Survivors of Oklahoma Association (PSOA)
Meeting Place: Oklahoma Easter Seal Society Building
2100 N.W. 63rd Street
Oklahoma City, OK 73116-5199
Phone: 405-848-2525 Fax: 405-842-9704
When: 2nd Saturday of each month at 10:30 a.m.
Easter Seal Contact: Helen Hood, Special Projects
Current President: Carolan Bledsoe 405-354-4189
Newsletter: "Pride Support Optimism", published quarterly
An initial information packet of cutting edge information is provided, much of which is new and very useful to me. Information was included for post polio clinics in Dallas and Houston. Also, PSOA maintains a file of local doctors and therapists, etc., "that have dealt with polio patients and have shown themselves to be concerned and interested in dealing with our unusual health issues."
Regards, Jack Jack_Schwartz@itlnet.net
-----
We have just recently formed a new Post Polio
Syndrome (PPS) support group for Northern Nevada. Our board is
composed of a neurologist, psychologist, physical therapist, and a
registered nurse, who is also a PPS victim.
We would like to invite any PPS victim, family or other interested party to our support group meetings. Please feel free to contact me at my e-mail address; DMiddl5705@aol.com or visit our web site at: http://members.aol.com/DMiddl5705/index.html
-----
West Central Iowa Post Polio Support
Group (WCIPPSG)
http://www.geocities.com/HotSprings/Villa/5545
has regular monthly meetings on the
third Saturday of each month in Denison, Iowa, at the Crawford County
Memorial Hospital. Everyone is welcome to attend any or all of the
meetings. Instead of the August meeting, however, we are taking a
field trip to Joslyn Art Museum in Omaha, Nebraska. If you would
like to come along or drop in on a meeting, let me know.
Hugs, Mil
-----
Subject: Associação Pós-Pólio de Portugal
Date: Sun, 12 Mar 2000 18:23:56
-0000
From: "JOSÉ MANUEL DE BARROS
DIAS" <gouvim@mail.telepac.pt>
The homepage of the Portuguese Post-Polio Association (APPP) was updated today. Thanks! http://www.geocities.com/HotSprings/Resort/4652/
Dulce Dias
Associação Pós-Pólio de Portugal
Largo do Colégio, 1-B
Apartado 2089
7001-901 Évora - PORTUGAL
-----
Subject: New Polio Web Site
From: Rick Kneeshaw
<polio@mindspring.com>
The San Diego Polio Survivors has a new web site. The URL is:
http://polio.home.mindspring.com/
or
http://home.mindspring.com/~polio/
Feel free to add these links to your web sites.
The e-mail for our group is:
polio@mindspring.com
If you have a web site and would like us to
add a link to your site
please e-mail me.
Thanks,
Rick E. Kneeshaw
Faciltator
----- -----
West Virginia Chapter of Polio
Survivors
http://www.geocities.com/HotSprings/Villa/8519/
-----
Mornington Peninsula Post-Polio
Support Group - Melbourne, Victoria, Australia
http://people.aapt.net.au/~ddlloyd/
-----
New address. We are already in the new
address. We waited for their visit.
=======================================================
En Argón luchamos contra el maldito escalón.
ESCALONES NO!
Visita el WEb en
: http://argon.interclub.net/
Envíar correo
a : argon@interclub.net
Lista de correo a : club-argon@costasol.net
=======================================================
-----
These pages just
getting started.. but looks like they will have some
very interesting stuff:
Association Polio of the Czech Republic (English & Czech)
-----
The Central Indiana Post-Polio Support Group
http://home.att.net/~mcrim1361/PPSG.htm
-----
Subject: UPDATED INFORMATION ON SA
POST-POLIO GROUP
From: cwebster <webster@SCO.EASTCOAST.CO.ZA>
This is the information on The South African Post-Polio Syndrome Association in South Africa .... now known as Post-Polio Network S A.
Thank you and kind regards.
Cilla webster@sco.eastcoast.co.za
Name:
Post-Polio
Network S A
Address:
PO
Box 1155
Umkomaas
4170
KwaZulu-Natal
South
Africa
Telephone: +27
(0)39 973 2441
Fax:
+27
(0)39 973 2441
Cellphone:
+27
082 928 0690
E-mail: webster@sco.eastcoast.co.za
Contact:
Cilla
Webster
-----
Subject: Re: support groups
From: M E Hemby <mhemby@OURPLACE.COM>
Dianne,
The Texas Polio Survivors Association has a great packet with help to start support groups - topic ideas, how to handle discussions, etc. check them out at:
They should be able to get you what you need (even tho you don't live in the Great State of Texas!).
Mary Ellen
-----
Groupe Français de Liaison et D'Information
Post-Polio (French) -
Group French Connection Information about
PPS, List of French PPS
Centers and Physicians
http://members.tripod.com/post_polio_france/
-----
Polioburgers Sähköpostikerho (Finish only)
http://www.kauhajoki.fi/~jukkato/poliobur.html
------
Subject: Easter Seals Colorado PPS Website -
Recommended PPS Reading List
From: Jack Schwartz <Jack_Schwartz@ITLNET.NET>
Hi Folks,
I continue my membership in Easter Seals
Colorado since leaving the Rocky Mountain area in 1997. ES
Colorado started developing a PPS website about then. I revisited
the website yesterday and the results are impressive, including an
extremely thorough PPS recommended reading list.
-- Cactus Jack
-----
Subject: Polio Outreach of Washington
From: "Rona Nelson" <rona@nwinfo.net>
Polio Outreach of Washington has updated
their site and changed their address.
The new address is: http://polio.dyndns.org/polio/
We have our support groups listed as to meeting dates and times and contact info for several people. We have added a bulletin board for people to write in with questions or comments. We are trying to add new stuff as we go along.
Your pps friend in Union Gap, WA
Rona Nelson
Polio Outreach of Washington
Secretary
-----
Polio Net Japan [Japanese]
http://www65.tcup.com/6501/pnetk.html
-----
SNAPS (Southern Nevada Assoc. of Polio
Survivors) LIFELINE
Our URL is:
http://www.reviewjournal.com/communitylink/snaps/index.html
We're located in Las Vegas, Nv.
You're just a click away!
-----
Subject: Asociación "AFECTADOS DE POLIO Y
SÍNDROME POST-POLIO DE MADRID"
From: "SPP" <aldeasur@teleline.es>
C/ Luis de Hoyos Sainz 18, 11B
28030 Madrid
España
Tel.: 686 000 171
Fax.: 91 477 64 73
email: aldeasur@teleline.es
http://members.es.tripod.de/postpolio
-----
Afectados de Polio y Sindrome Post-Polio de
Madrid: Asociacion
PostPolio [spanish only] informacion sobre
polio y sindrome postpolio
http://members.es.tripod.de/postpolio/
-----
Subject: www.postpolio.it
From: "hermes" <hermes@postpolio.it>
E' stato messo in rete il sito http://www.postpolio.it/
Per ora è l'unico sito in italiano che tratta
la sindrome Postpolio
(PPS).
-----
Página Del Sindrome PostPolio
(Spanish) Multi-Frames
http://www.codifiva.org/polio/iniciopolio.htm
-----
Post-Polio Support Groups: - Mobile Alabama,
Florida, Missisippi Gulf Coast-newsletter also online - 10/03/2000
http://members.aol.com/POSTPOLIOSG/
-----
Post-Polio Network of Western Australia "self
help group of Polio survivors in Western Australia" Polio Office and
Clinic at Perry Lakes Stadium Undercroft - Meagher
Drive Floreat WA 6014 http://bajoran.upnaway.com/poliowa/
-----
Polio Network Victoria Australia
http://paraquad.asn.au/services/polio/polio.html
-----
The Polio Connection, P. O. Box 9575,
Cincinnati, OH 45209
http://home.fuse.net/PolioConnection/
-----
Subject: Exciting New
NJPN Website!
From:
"Joan Swain" <jswain@blast.net>
Announcing The New
New Jersey Polio Network
Website
Our thanks to webmaster Lee Bekir, of the Raritan Valley Post-Polio Support Group, who built the website and who will update it periodically. Milly Tawata, also of the Raritan Valley group, will provide backup support. Your Newsletter editor will continue to provide content.
Be sure to click on "Discussion" and leave a message, ask a question, start a conversation, or make a suggestion.
-----
Subject: New webpage
From: dabluzman1@aol.com
I have just put up a new webpage for the Southern Oregon Post-Polio Support Group. I have a lot of information in the LINKS area. Please drop by and take a look. Perhaps there is information to glean. If you live in Southern Oregon there is local information on our meetings aswell.
http://soorppssupport.homestead.com/
Thanks,
Dave in
Oregon
-----
Subject: Re: Post Polio Syndrome [SF BAY
AREA]
From: Phyllis Hartke <PHartke@AOL.COM>
I have responded to Francisco by private email, but thought it might be helpful to let the listserve readers who are in the San Francisco Bay Area know that our support group - San Francisco Bay Area Polio Survivors (SFBAPS) - is quite large and active in raising community awareness about PPS and knowledgeable medical professionals in the Bay area. We now have the beginnings of a website that we are in the process of expanding -- http://www.hometown.aol.com/sfbaps
Anyone desiring more information, please contact me.
Phyllis Hartke
SFBAPS President
phartke@aol.com
-----
Subject: Lima Ohio new support group
We have started a new support group here in Lima Ohio. You may inquire at: PPS_Lima@hotmail.com
-----
Our Support Group starts meeting the second
Monday of each month starting in March and running through December
yearly... We have been a Support System in the state of West Virginia
for 5 years this July.
Becky White, Polio Support Group
Leader
C/O Mid- Ohio Valley Post Polio
Support Group
2807 11th Avenue
Vienna, West
Virginia 26105-2674
-----
Greater Boston Post-Polio Association http://www.gbppa.org/
-----From: Scout <Scout@SKALLY.NET>
Post Polio Support Group Ireland
information about PPS as well as health topics in Ireland.. many links, and online versions of their newsletter from 1998 through Autumn 2000.
Do not use the online application form.. or give out address, phone or fax info on feedback form.. they are not on a secure server.
...Cleo scout@skally.net
-----
Subject: POLIO SURVIVORS PLUS Of ORANGE
COUNTY, CA.
From: "Dianne De Paul"
<diandp@fea.net>
POLIO SURVIVORS PLUS Of ORANGE COUNTY, CA.
P.O. BOX 645
LAKE FOREST, CA. 92609
Meetings: 4th Wednesday in even months.
Time: 1:30 p.m. to 3:30 p.m.
Meeting Site: Laguna Woods, Ca.
CALL FOR DIRECTIONS
Call for info. Dean Eastman...949.859.7372
e-mail contact: Pepe Motola pepemotola@fea.net
Contact Pepe for info on the newsletter.
-----
Subject: North Arkansas Polio Support
Group
From: rdennis
<rdennis@centurytel.net>
Hello everyone, I'm proud to want to show off our new web site for the North Arkansas Polio Support Group. The local community has helped us along on this, and we are very happy. Please go to http://www.twinlakescommunity.org/ ....then click community recourses, then click Health...scroll down to our site. Hope everyone likes it and will pass our address around for all to see.
http://www.twinlakescommunity.org/showdetails.cfm?ID=25
Thank you Dennis Williams
----------
Subject: Scottish Post
Polio Network New Web Site
From:
Steve McCrea <sppn@sppn.org>
The Scottish Post Polio Network (SPPN) have a new web site
Stephen McCrea
Secretary Scottish Post
Polio Network
-----
Subject: Greater Boston Post-Polio
Association
From: lili g
<sophia_7777@YAHOO.COM>
Read article by member Carol Swedberg, SJU member and PPSer.
-----
Subject:
Vaccine-Associated Polio Society (VAPS)
From:
Scout <scout@SKALLY.NET>
Vaccine-Associated Polio Society (VAPS)
...Cleo scout@skally.net
-----