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Forums - Mailing Lists, Online Chat Rooms, Newsgroup:


There are a number of active mailing lists.

   The lists are complimentary and each has a different focus. You're urged to read the more descriptive information below and at the various  linked sites. Try out one or more of the lists to get a better idea of what each list is like.

Support oriented - polio-subscribe-request@listserv.icors.org

Information oriented -  see http://www.skally.net/ppmed/

"A laid-back low-key, no-beefs list" - post-polio@yahoogroups.com


 For additional lists see: http://www.skally.net/ppsc/ppsc-l.htm


 -----
  polio@listserv.icors.org - The intent of the list is to  "Serve two  purposes: To supply information, and to provide support and friendship  in an informal and friendly environment."

  To subscribe go to

http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=polio&A=1


or send an e-mail  to:

    polio-subscribe-request@listserv.icors.org

 -----
 POST-POLIO-MED: is an open 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; support   group, newsletter and other PPS related announcements. To subscribe go to

http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=post-polio-med&A=1


or send an e-mail  to:

    Post-Polio-Med-subscribe-request@listserv.icors.org


For more info on Post-Polio-Med, go to the Post-Polio-Med Web Page:
     http://www.skally.net/ppmed/

-----
  Tom McKeever has moved his long standing Post-Polio FIDONET Echo to the Internet, although the FIDONET echo itself still remains
active.

  "As a service to the FIDONET folks who have Internet access, we had established a Moderated List-Server at "pps@pmihwy.com". Effective 8 May, 1999, this list has moved to a NEW home - One with many more features and flexibility at: "post-polio@egroups.com". This List is  ALSO  a "controlled" list, in that rules are established, and WILL be enforced.

The List is meant to be an adjunct only to established list(s) and not to supercede or replace any others. The List is low-key, PPS-Centric, meant to be kept LIGHT and POSITIVE, and will be KEPT that way!! <G> - Consider it a laid-back, light alternative. :-) Humor, poetry, POSITIVE stories welcomed.. Negativities discouraged!! - No slamming of other lists, folks, companies, service providers, physicians  or the like will be tolerated!! The only other request is that the subjects dealt must have direct relevance to PPS and how it  has/does/will affect our lives!!'

 'You can ALSO subscribe by sending a no-subject message to:
 "post-polio-subscribe@yahoogroups.com" or by going to the Web Site
at
"http://www.yahoogroups.com/list/post-polio" and registering on-line!!

  Thanks!   Tom

-----
A polio support group mailing list has been created for you: its list address is polio-groups@yahoogroups.com.

http://groups.yahoo.com/group/polio-groups/

The purpose of the new list is to provide a place on the Internet where polio survivors can obtain polio support group information, such as newsletters, meeting schedules and special projects that may be in the
process of being worked on by several support groups.

Subscriptions: Contact Chris Salter <linpolioweb@loncps.demon.co.uk>

Posting: Sending a message to polio-groups@yahoogroups.com will distribute it to all of its subscribers.  Because the list is a private list it will require the sender to be a list member.

List Archive: A private archive of messages sent to the mailing list is available on the Web at http://groups.yahoo.com/group/polio-groups/

-----
 There is an AOL chat on Thursday evenings starting at  8:00 P.M. EST and goes until 9:00 P.M. EST in  Health Channel Talk  on AOL.  This chat is hosted by HOST HLTH Misty.  Only AOL subscribers can get into this chat room

There is also another chat on Tuesday evenings at Village Health on the Web.  We meet from 9:00 P.M. EST until 10:00 P.M.EST .  You can go to  The Womens Network Chats , look for the chat area, scroll down until you fine Post Polio Syndrome.  You host in that chat will be cl-ivhealthmisty.  Anyone on the Internet can get into this chat room from any server they may have.

We look forward to seeing you there.

  For more info write Azvwis@aol.com

-----
There are several other chats during the week on AOL (not affiliated with Equal Access Cafe)...click on private room and type in _postpolio_ (without dashes)

Sunday night 9:00 EST,
Monday afternoon 4:00 EST,
Monday night 9:00 EST,
Thursday afternoon 4:00 EST,
Friday afternoon 4:00 EST

I might be forgetting a few of them. I like the ones in the private room because there are rarely more than 12 there...so the conversations are easier. I have a hard time following the conversations when there are over 20 people talking at once. ;-)

Feel free to join us.....there are a lot of neat friends there...you will feel welcome.

Elizabeth

-----
Polio Support Chat Room HAS A NEW HOME

 Finally, after trying a few different environments Polio Support Chat has found a new home.  You will now find us on AfterNet, still listed #polio.  Your Mirc program should give you a list of AfterNet servers, in the event that you may be using an older version and you do not have AfterNet servers listed you may find a list of their servers on their web page located at www.Afternet.Org.  You may copy those and add them to your server list or you may add the following one  hich is located in Vancouver Canada and seems to work very well for our North American users,  In your setup options you will find a list of servers, at the top of that list there is a box where you can type in a server  address or click add, depending on your program,  it will give you small window with the following:

  Description:  (type in) Afternet.Vancouver.BC
  IRC Server:  (type in)  Infinet.AfterNet.Org
  Port:  (type in) 6667
  Group:  (type in) Afternet

  Click OK

  This will automatically add the Afternet server to your list, then you simply have to click on connect to server. Should you encounter any difficulties please feel free to email me at peggybran@pacificcoast.net

Carolann Normandin is the Founder/Owner  of  the Polio Support Chat Room I am the Master (hehe) of the Polio Support Chat Room and run a nightly shift starting at around 6:00 pm Pacific Time.  The room has a channel serve bot this allows us to have th room open 24 hours a day, you will see this little guy listed in the list of names so if you get to the room and see @X2 and start trying to communicate with him you will become frustrated in deed, our friendly little bot doesn't speak he just hangs around.

We will try to schedule a regular chat hour for those not living in North America, in order for me to do this I need you to email me with your location, the time you would prefer to have the Chat scheduled and what that time would be here in my location which is Victoria,  British Columbia, Canada.  I will take all your emails and requests and try and come up with a time slot that will suit everyone.  Please don't expect me to accomplish this overnight, my superwoman suit is  presently at the cleaners.

  I look forward to seeing you all in polio chat.

    Be well my dear friends.

      Peggy Bran aka Flakes

-----
 GrassRoots is a text-based virtual reality of real-time communication on the World Wide Web. GrassRoots developed from the need to provide universal access and communication to individuals with disabilities. People are able to communicate much as they do in the physical world, and this lends itself to an increase in understanding, support, and the exchange of information.

  To visit the WebTree component of GrassRoots:
  http://www.enabling.org/grassroots/

   Ann K. Parsons,  akp@eznet.net

 -----
Subject: Christian E Group    

 We consist of 47 (and counting) folks that have PPS and share the love of the Lord with and for each other.

 Here is the URL for anyone wanting to join us and it is an open membership.

http://www.egroups.com/group/ppsersandjesus

Warm regards

-----
Subject:  [PPM] New PPS related email lists
   From:  Angus <Scout@SKALLY.NET>

Post_Polio_Syndrome_In_Iowa

http://www.egroups.com/group/Post_Polio_Syndrome_In_Iowa

"Formation of a group of polio survivors, or so we thought, who are living in the area of Iowa.  To bring support and help to those of us who now are experiencing Post Polio Syndrome. "

-----
Subject: FYI: New Polio History Yahoo Group
   From:  "Christopher J. Rutty" <hhrs@healthheritageresearch.com>

Hi All:

You're invited to join the new PolioHistory Yahoo Group, to share stories, memories, memorabilia, photos and resources about the history of polio; from the epidemics, to the vaccines, to post polio syndrome, to polio eradication.

http://groups.yahoo.com/group/PolioHistory

This Group has several purposes, primarily to provide a forum for those interested in learning more about the history of polio, including those who have lived through the disease directly; or have loved ones who have; or were involved with helping people with polio as doctors or nurses; or were involved with the development of both polio vaccines; or just have an interest in the history of polio as an amateur or professional historian (like myself).

There are also several ongoing personal, local, national and international polio history projects in development, and it is hoped that this Group can serve as a focus of discussion, news and resources in support of these projects and to help facilitate new ones.

This is not a Group to discuss current personal or medical challenges of Post Polio Syndrome, except if there is a clear historical component.

This Group will be moderated by myself to help keep things focused and to avoid spam or other inappropriate postings. For more on my background with respect to the history of polio, feel free to visit:

http://www.healthheritageresearch.com/PolioHistory.html

Take care,

Chris
Owner: PolioHistory
 

--
***********************************
CHRISTOPHER J. RUTTY, Ph.D.
hhrs@healthheritageresearch.com
*************************************************************************
Founder & President, HEALTH HERITAGE RESEARCH SERVICES
HHRS Website:
http://www.healthheritageresearch.com
Online Portfolio: http://www3.sympatico.ca/cmrd/CJR
**********************************************************
Polio History Page:
http://www.healthheritageresearch.com/PolioHistory.html

-----

There is a newsgroup named alt.support.post-polio. You can access this through your newsreader via   news:alt.support.post-polio

-----

  For additional information on forums see:

http://www.zynet.co.uk/ott/polio/lincolnshire/directory/forums.html#Forums_Chat

and

http://www.skally.net/ppsc/ppsc-l.htm
 



Upcoming Events:        See: http://www.skally.net/ppsc/event.html 





Newsletters:

Subject   Gleanings
From       Millie Malone Lill <mil.lill@gmail.com>

Gleanings, the newsletter for the Nebraska Polio Survivors Association is published every other month and can be read online at:
http://ne-polio.org/

thank you.
Millie Malone Lill, editor of Gleanings

-----
Subject     Florida East Coast Jan/Feb 2012 Newsletter
From         Scout <Scout@SKALLY.NET>

Florida East Coast Post-Polio Group's January/February 2012
Newsletter is online:

http://home.iag.net/~bgold/jan-feb-2012.htm

CONTENTS:

Meeting Notice

>From Barbara

The Night the Mothers Marched On Polio by Tom Hoover, Reprinted from
Polio Echo Newsletter, September/October 2011

The Polio Experience By Dr. Mavis Matheson, reprinted from the Polio
Regina “Polio Postbox”, Christmas, 2011, Regina, Sask, Canada, with
the permission of Dr. Mavis Matheson.

Smile a Lot – It Just May Save Your Life, Reprinted from USA Weekend,
Dec. 23-25, 2011, HealthSmart, Advice from The Doctors

What Polio Took Away: Survivors seek the records that may fill in
gaps in childhood, Jun. 11, 2011 DETROIT FREE PRESS, Reprinted from
Southern Arizona’s Polio Epic, August-September 2011

Whale or Mermaid? Author Unknown

Calmness In Our Lives, Author Unknown

This Sound Familiar, Author Unknown

-----
Subject     "Post-Polio Health" Summer 2011 Edition
From         Scout <Scout@SKALLY.NET>

Selected articles from the Summer 2011 edition of Post-Polio Health
International (PHI) Newsletter, "Post-Polio Health" are online:

http://www.post-polio.org/edu/pphnews/pph27-3.html

CONTENTS: (ALL PDF FILES)

Promoting Positive Solutions with by Rhoda Olkin, PhD & Stephanie T.
Machell, PsyD [ONLINE]

Ask Dr. Maynard [ONLINE]
  Post-Polio and diabetes
  Do those with PPS need more medications?
  Post-Polio on crutches and rotator cuff tear surgery

Aging Well with Post-Polio Syndrome: Don't Take Fatigue Lying Down,
AgRehabilitation Research and Training Center on Aging with a
Physical Disability [ONLINE]

=======================================

Calcium, Vitamin D and Bisphosphonates, Oh My! [Not Online]

Letter to the Editor  [Not Online]

Thank You  [Not Online]

Share Your Experiences at Polio Place  [Not Online]

----- 
Subject     Boca Area Oct. 2011 Newsletter
From         Scout <Scout@SKALLY.NET>

Boca Area Post-Polio Group's Oct., 2011 Newsletter is online

http://postpolio.files.wordpress.com/2008/12/october-2011.pdf
999kb pdf file

CONTENTS:
September 11 Minutes

Polio strain Spreads to China From Pakistan, Source 20 Sept. 2011
BBC.Co. UK

Meditation: Take a Stress-Reductin Break Wherever you are by Mayo
Clinic Staff , Reprinted from The Sunshine Special, FL, Nov/Dec 2009

The Amazing Cucumber, Source:  Beverly Schroll, member of FECPPSG,
Reprinted from FECPPSG, FL, Jan/Feb 2010

Calmness in OUr Lives, Reprinted from FECPPSG, FL, Jan/Feb 2010

Lost & Stolen cards - what to do: An Attorney's Advice is Important,
Reprinted from The Sunshine Special, FL, Nov/Dec 2009

Find Your Balance: Getting to the source of your unsteadiness,
Reprinted from Good Times, FL, Spring 2010

A Black Oasis: Tuskegee Institute's Fight Against Infantile Paralysis
1941-1965 by Edith Powell, Ed.D, MPA, MT (ASCP)SBB, Reprinted from
Post-Polio Health International Conference, April 23, 2009

University of Utah Collectin Polio Survivors' Stories, by Lisa
Rosetta," The Salt Lake Tribune", Reprinted from Polio Epic, Inc. AZ,
Feb/Mar 2010

The Six Mistakes of Man by Marcus Cicero 106 BC - 43 BC, a great
Roman Orator

Suzy Cohen, Ask the Pharmacist: Pack Meds in Case of a Natural
Disaster, Source: Reprinted from Sun Sentinel, September 4, 2011

-----
Subject     Boca Area Sept. 2011 Newsletter
From         Scout <Scout@SKALLY.NET>

Boca Area Post-Polio Group's Sept 2011 Newsletter is online
959kb pdf file
http://postpolio.files.wordpress.com/2008/12/september-2011.pdf

CONTENTS:
August '10 Un-Minutes by the late Manny Halpern

In Memory: Ten Minutes With . . . Danny Kasper

Ask The Expert: Dr. Susan Perlman
  Limb Jerking
  B12 for fatigue
  Safe drinking water
  Stem Cell Treatments for PPS
  Weight loss without exercise
  End of the day stiffness & Pain

Taste the Colors by Dr. Mehmet Oz reprinted from "The Seagull", NC,
April 2010

Take a Deep Belly Breath by Dr. Mehmet Oz reprinted from "The
Seagull", NC, April 2010

Did You Know..., author unknown

Info About Clothes Dryers, author unknown

The Role of the Flush Toilet in the Spread of Polio, Source: Courtesy
of Toiletology 101, Reprinted from FECPPSG, FL, March/April 2010.

Clean and Simple, Author unknown, Reprinted from Good Times, FL,
Spring 2010

Tip, Author unknown, Reprinted from Good Times, FL, Spring 2010

Don't Ever Stop Dreaming, Reprinted from FECPPSG, FL, March/April
2010

Cruise information

Cars and Lifts, Chairs and Scooters Reprinted from The Lighthouse,
GA, March 2010

Beginning With the Right Attitude, Source: How To Be A Friend To The
Handicapped, by Leslie D. Park, Reprinted from The Sunshine Special,
FL, July/Aug 2008

Treatments for Annoying Tinnitus, Reprinted from Sun Sentinel, FL,
11/13/08

Did Roosevelt Have Post-polio Syndrome? Disability Encyclopedia?
Reprinted from Polio Epic, Inc., AZ, Apr/May 2009

Failure to Diagnose Post-polio Syndrome "Affects Thousands",
Reprinted from Polio Epic, Inc, AZ, Apr/May 2009

Take Charge of Your Health, Reprinted from Good Times, Spring 2010

-----
Subject     online: June 2011 issue of "Venitilator-Assisted Living"
From         Scout <Scout@SKALLY.NET>

The June 2011 issue of IVUN's ""Venitilator-Assisted Living"" is
online:

via http://www.ventusers.org/edu/valnews/val25-3.html
or 879kb PDF File
http://www.ventusers.org/edu/valnews/val_25-3jun11pAll.pdf

CONTENTS

Using the PRVC Mode at Home with iVent 101 by Kathleeen W. Garwick,
RRT

From Around the Network by Judith R. Fischer, MSLS, IVUN Information
Specialist
  Masks
  Budget Cuts May Affect Vent Users
  Muscular Dystrophy
  Parent Project Muscular Dystrophy

Music Helps Reduce Stress and Anxiety by Linda Chlan, PhD, RN

Ask The Experts: when is a cuffed trach tube preferable, when is it
not & when should it be inflated
  Linda Dean, RRT responds

-----
Subject    Central Virginia Post-Polio Group's June-July 2011 Newsletter
From        Scout <Scout@SKALLY.NET>

Central Virginia Post-Polio Group's June-July 2011 Newsletter is
online:  752KB PDF File

http://cvppsg.org/newsletter/2011-06-07.pdf

CONTENTS:

Calendar Events

>From the Editor Mary Ann Haske

Scholarship Funds Available

Michael's Tune by Henry Holland, MD

Save the Dates

Learning to Drive Again by Joan Langhi, reprinted from "Post-Polio
Health" issue and date unknown, with permission.

Swallowing Difficulty and the Late Effects of Polio, Barbara C.
Sonies, PhD, CCC, BRS-S, reprinted from "Post-Polio Health" issue and
date unknown, with permission.

It is Not a Perfect World by Frances Thomas

FYI

Eleventh Annual Fall Retreat

-----
Subject     Rancho Los Amigos PPSG Newsletter
From         Richard Daggett <richarddaggett@CA.RR.COM>

Hi, all.

The June 2011 newsletter from the Rancho Los Amigos Post-Polio
Support Group is now online. The newsletter features a report based
on Dr. Vance Eberly's presentation to the Rancho support group.
Dr. Eberly is the orthopedic specialist in the Rancho Los Amigos National
Rehabilitation Center polio clinic. You can view the report by going to the
support group's web site: 
www.ranchoppsg.com or by clicking this link:
http://www.ranchoppsg.com/2011-6_newsletter.pdf


Did you know that during the polio epidemics of the 1940s and early 1950s,
Rancho Los Amigos was the largest respiratory polio center in the United
States. Rancho is probably unique because it continues to have a dedicated
polio clinic. The clinic is every Friday, and, in addition to Dr. Eberly, the clinic
 has orthotists, physical therapists, internal medicine specialists, respiratory
specialists, AND, on most clinic days, the renowned Dr. Jacquelin Perry is present.




Richard Daggett, President
Polio Survivors Association
12720 La Reina Avenue
Downey, CA 90242-4243
richarddaggett@ca.rr.com
or Richard@polioassociation.org
 <http://www.polioassociation.org/> www.polioassociation.org

-----
Here are some additional newsletter sites:

Post-Polio Network RSA
http://www.postpolio.co.za/

N.C. Florida March/April Newsletter
http://www.postpoliosupport.com/newsletter.html.

Post-Polio Resource Group of Wisconsin
http://www.pprg.org/index.php

Post-Polio Network NSW Australia
http://www.post-polionetwork.org.au/particles/particles.html
http://www.post-polionetwork.org.au/news.html

San Diego Polio Survivors
http://www.ppsmanager.com/

Post_Polio Support Group, Ireland
http://www.ppsg.ie/publications_survivor.html

Western NY Polio Survivors Group Newsletters
http://www.wnydf.bfn.org/public/polio.html

PoliO'Canada Newsletters
http://www.marchofdimes.ca/EN/programs/PolioCanada/Pages/PolioInfo.aspx

San Diego Post Polio Notes
http://members.tripod.com/sandiego_polio/pastppn.htm


-----




   There are a number of books and videotapes dealing with aspects of polio and post-polio.
Here are a few links to sources and reviews.

List postings: are here

IPN:      http://www.post-polio.org/ipn/books.html

Upcreek CoOp: http://members.tripod.com/upcreek/bookstore.htm 

Subject     FWD: BOOK: The Polio Journals: Lessons from My Mother
From         Scout <Scout@SKALLY.NET>

The Polio Journals: Lessons from My Mother by Anne K. Gross, PhD, is
a recent contribution to the post-polio literature. Gross, a clinical
psychologist, received her mother's journals after her death in 1985.
Eighteen years later, after her father's death, she dug out the
diaries her mother started when she was in her fifties. Gross states,
"This book is my attempt to make sense of the legacy of my mother's
illness and the price all of us paid for not speaking the truth." For
more details, plus a discussion guide, check out
http://www.thepoliojournals.com

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