Last update 5/1/2008

 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 

        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.polionet.org/PI1-94JA.htm
-----
 Tom Walter's  What is PPS  at:

    http://www.zynet.co.uk/ott/polio/lincolnshire/index1.html#whatpps
 -----
 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.zynet.co.uk/ott/polio/lincolnshire/

-----
Drs. Bruno and Frick have put up an informative site on the Web at:
    http://members.aol.com/harvestctr/pps/polio.html

The PPS Facts ARE Out There !

Visit Harvest Center's new quick-loading, scrollable Post-Polio Page for the latest facts about . . .

* The PPS AUDIO SYMPOSIUM
* The COMPUTERIZED ASSESSMENT PROGRAM (CAP) for PPS
* VAMPIRE BAIT: The Stress Annihilation AUDIO Workbook

* The POST-POLIO LIBRARY: Articles on PPS for downloading.

* The Harvest Center Speakers Bureau . . .
. . . and F.D.R.'s "We had polio! (Any other questions?)" T-Shirt Transfer

Best Wishes, Nancy

   also see :http://www.postpolioinfo.com

-----
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:

    http://skally.net/ppsc/

-----
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:

     http://www.polionet.org/

-----
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:

 On June 1, 2003, Gazette International Networking Institute (GINI) changed its name to Post-Polio Health International (PHI) to reflect a more focused scope of services and broader constituency, and has developed a new membership structure to strengthen the organization's advocacy role. The new name, Post-Polio Health International, is meant to project the broadest meaning of "health," encompassing the physical, emotional, social, psychological, and spiritual aspects of individuals' lives.

 Post-Polio Health International's mission is to enhance the lives and independence of polio survivors and home mechanical ventilator users by promoting education, networking, and advocacy among these individuals and healthcare providers.

           http://www.post-polio.org/
 

-----
 The GINI Research Fund was established in 1995 by the Board of Directors of Gazette International Networking Institute (GINI). Impetus for this decision was a generous bequest from polio survivor Thomas Wallace Rogers. In 2003, GINI changed its name to Post-Polio Health International (PHI), and the fund is now called The Research Fund.

To send contributions or request additional information write to:
  Post-Polio Health International (PHI)
  4207 Lindell Boulevard
  Saint Louis, Missouri  63108-2915 USA

http://www.post-polio.org/don.html

-----
 The POLIO CONNECTION of AMERICA

     Our mission is to find and help Polio Survivors.
     Visit our website and see what we do and have done.

     Visit Polio Connection of America:
      Polio Survivors looking for
       Polio Survivors to help
          Polio Survivors.

      http://www.geocities.com/w1066w

 

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

-----
The Lincolnshire Post-Polio Network

http://www.ott.zynet.co.uk/polio/lincolnshire/directory/clinics.html
http://www.ott.zynet.co.uk/polio/lincolnshire/directory/org.html

-----
Post Polio Syndrome Resources State & Country Help Locator

http://ppsr.com/statelocator1.htm

-----
Physiatrists: American Academy of Physical Medicine and Rehabilitation

http://www.aapmr.org/

-----
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   Polio survivors start local support group: Texarkana
From      Scout <Scout@SKALLY.NET>

Polio survivors start local support group
Texarkana Gazette - Texarkana,TX,USA
By: Ashley Gardner - Texarkana Gazette -    Published: 04/02/2008

http://tinyurl.com/2h2eq2

excerpt:
"Two local polio survivors are starting a support group for people
experiencing post-polio syndrome.

The first meeting of the Texarkana Area Post Polio Survivors will be
2 p.m. Saturday [April 5th] in the Dogwood Room at CHRISTUS St.
Michael Rehabilitation Hospital. "

----- 
Subject: Polio Survivors Association website
From: Richard Daggett <richarddaggett@COMCAST.NET>

Hi -

After months of delays and extreme frustration the website for the Polio
Survivors Association is again up and running. We still need to add
additional information but it should now be easier to keep it current.
I invite your comments.

http://www.polioassociation.org/

Richard Daggett, President
Polio Survivors Association
562-862-4508
richarddaggett@comcast.net
or richard@polioassociation.org


-----
Subject: New PPS support group starting in Austin, TX
From: Michael <dvar_tov@hotmail.com>

Just wanted to let anyone who's in Austin, Texas or the Austin area
know that a post-polio support group is starting up in Austin.  We
meet the first Monday of every month at the Odd Fellows Lodge, 6809
Guadalupe St., at 6:30 p.m.

In these meetings we will:

Discuss PPS and how we can manage it

Have special guest speakers

Have snacks and drinks and a good time

Find ways to help ourselves and each other

The group's just getting started and is much needed as there is
nothing of its kind in Austin.  We PPSers are our own best resource
for PPS, but we can't network effectively if we don't make contact
with one another.

Anyone in the Austin are who's interested in being part of our group
please contact Cathie Schumacher at 512-257-0123.

Thanks,

Michael

-----  
Subject: The Polio Outreach of Connecticut
From: LinOnnLine@aol.com

 The mission of Polio Outreach is to enhance the lives and independence
of Connecticut’s polio survivors by promoting education, support, and
information, while raising community awareness of polio and post-polio
syndrome.

 The URL is:  http://www.the-polio-outreach-of-ct.com/

 And the  latest issue of The Polio Messenger can be read at:

http://www.the-polio-outreach-of-ct.com/PolioMessengerWinter2005-06.pdf

   Thank you so much.
   Linda


   *Linda*
    _____________

   Linda Wheeler Donahue
   President
   The Polio Outreach  of Connecticut
   Editor, The Polio Messenger
   e-mail: LinOnnLine@aol.com
    http://www.the-polio-outreach-of-ct.com/

    _____________

-----
Subject: Announcing the new PPRG website!
From: Post-Polio Resource Group <pprg@execpc.com>

It's done! The newly redesigned website for the Post-Polio Resource
Group is now online and live: http://www.pprg.org

Please note the new email addresses:

Together@pprg.org - This is our main, general address
President@pprg.org - This goes directly to our group president
Membership@pprg.org - This goes directly to our membership chair.
Newsletter@pprg.org - This goes directly to our newsletter editor
Webcomments@pprg.org - This goes directly to our internet person (me).

Our internet address is still pprg.org

The old geocities address and old email of pprg@geocities.com will be
discontinued in the near future.

Take a look at PPRG.ORG and let me know what you think!

-- 
Michael Odle
PPRG Internet Coordinator
Together@pprg.org
www.pprg.org


"We're all in this together."

-----
Subject: New Web Site
From: suderem <suder@dtnspeed.net>

www.PostPolioBransonGoers.com

  The above is a new web site started by Post-Polio Bransongoers. It
contains many articles and links to polio sites. The Bransongoers meet
annually for a reunion at Settle Inn in Branson.

Elva


  This year's get-together will be from June 9 to June 12, 2006; the
weekend before Father's Day. For more information see
www.PostPolioBransonGoers.com

----- 

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 --

     http://www.dimes.on.ca/

-----
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

      http://www.polioquebec.org/

-----
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)

http://www.polio.cz/

-----
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:

http://www.texaspolio.org/

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

http://www.eastersealsco.org/

-----
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!

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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

   www.njpolio.org
 

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

http://www.PPSG.IE/

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

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