This page contains information on Post-Polio Forums.   You can also go to the main Welcome  page,  the  Additional Resource  page, and the  Archive   page.

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


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  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

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 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/

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  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

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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/

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 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

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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

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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

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 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

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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

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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. "

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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

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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 

Subject     polio camp in MI.
From         Ethel Iutzi <inthecountry@HUGHES.NET>

There will be a reunion at Camp Roy-El at Twin Lakes near Traverse City, Michigan
on Aug. 15th 2010 from 1:00-5:00.  During the polio age the camp was open for all
post polios over 8 years of age. Mr. B our PT and his wife and two daughters spent
many years at camp with us polios. They are gone now and the camp has been used
for other disablied people.  Anyone interested in the reunion who attended Camp Roy_El
as a polio child or adult ( other disablities in later years) can contact me for more info.

Jean, in Mi.

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From the Editor

The Resource Directory for Ventilator-Assisted Living (2005) of
International Ventilator Users Network (IVUN) is now online at

http://www.post-polio.org/ivun/d.html

The comprehensive directory lists health professionals, ventilator
users, ventilator equipment and aids, manufacturers' addresses, and
related organizations, associations and foundations knowledgeable
about long-term home mechanical ventilation.

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Subject: San Diego Polio Survivors
   From: Rick Kneeshaw <polio@mindspring.com>

Check out the web site for the latest news:

Kaiser Conference Video Tapes Available...See "Polio News Page"

Abilities Expo Annouced... See "Polio News Page"

Planning for Summer Picnic Started...See "Members Page"

See the "Members page" for  a listing of meeting speakers through September 2004.

Next Meeting May 13... see "Members page".

New profile added.... Rick Kneeshaw.... see "Member Profiles" page.

The web site can be found at:

http://polio.home.mindspring.com/

or:

http://home.mindspring.com/~polio/

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Subject: WNY Polio Survivors Group March 2004 Newletter
   From: Scout <Scout@SKALLY.NET>
 

WNY Polio Survivors Group March 2004 Newletter is online:

http://www.wnydf.bfn.org/reference/journals/polio/polio04.mar.html

CONTENTS:

The March meeting will be at St. Luke's Lutheran Church at Union and
Maryvale on Wednesday, March 17, 2004 at 7:15 p.m., guest speaker
will be Karen Bunce, a speech and hearing pathologist at the Kaleida
Health Services

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Subject: Post_Polio Support Group, Ireland, Spring 2004 Newsletter
   From: Scout <Scout@SKALLY.NET>

Post_Polio Support Group, Ireland, Spring 2004 Newsletter is online:

http://www.ppsg.ie/newsletter24.htm

CONTENTS:

Annual General Meeting Info

Chairperson's update

>From the Editor

Proposal for EFNS scientific Task Force for "Post-Polio; Guidelines
for diagnosis and treatment"

News from the office

Accessible Holidays ... (first published on website www.ms-
therapy.ie)

Post Polio Syndrome Recognised by European Parliament (First printed
in the Lancet—December 2003, and reprinted with kind permission)

Letter to the Editor

Main Social Welfare Improvements and Rates of Payment—Budget 2004

A Book Review: Voices From the Edge, Edited by Steve Daunt,
Illustrated by Sean Hamil, reviewed by Joan Bradley

Carnitine Studies (Reprinted with kind permission of Post Polio
Network of Western Australia)

Is Your Name on the National Physical and Sensory Disability
Database?

Listen

Regional News

Fund-raising News

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Subject: Rancho Los Amigos Post-Polio Newsletter October/03
   From: lili g <sophia_7777@YAHOO.COM>

As many of you may recall, Richard Daggett, the editor of Rancho Los
Amigos Newsletter, will post to this list to inform us when the info for
the latest newsletter is online.

Mary Atwood as always has done a superb job reporting the presentation
of Dr. Pearlman in  Newport Beach to the Post Polio support group of
Orange County on May 18, 2003.

This newletter is chocked full of fantastic info..caution signs with PPS
meds broken down in catagories, evidence based medicine and PPS and
Research Highlights most interesting to us all. The long awaited study
of nervous systenm inflammation as a cause of PPMA (post-polio muscle
atrophy often referred to as PPS) It was reported that there are
cells in the spinal fluid of patients with PPS that are producing
inflammatory chemicals ("cytokines") similar to those seen in MS spinal
fluid and blood. This is the most interesting part to me....these may
be generated by reactions with "Old PolioVirus Debris that is Still
There." Many members on sju in the past have stated they believed the
old polio debris was still lurking in spinal fluid.

In an editorial responce to the Gonzalez reort, Marinos Dalakas, MD, a
premier researcher in post-polio and other neuromuscular diseases,
agrees that these Cytokines may cause progressive toxicity to nerve
cells and some of them can directly cause fatigue and excessive
sleepiness.

Noticeably absent from research ..nothing new from Dr. Bruno relating to
his studies of poliovirus-induced lesions of the reticular activating
system in the genesis of `brain fatigue` and cognitive problems.

Practical Management and most interesting opinions on Oxygen and the
PPSer.

As I previously stated, this October/03 newsletter is full of important
news for us PPSers. Check it out when Richard posts it's online and
ready to view.

GREAT work guys and gals..muchas gracias for all you do to share and
show support for PPS community. I always get much good info from your
newsletters.

With loving friendship,
Lili

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Subject: [PPM] Rehabilitation Gazette Winter 2002 is online
   From: Scout <Scout@SKALLY.NET>

Gazette International Networking Institute (GINI) Rehabilitation Gazette
Winter 2002 is online:

http://www.post-polio.org/gini/rg42-1.html

CONTENTS:

    New Security Requirements and People with Disabilities  [ONLINE] "The Air Carrier Access Act (ACAA) and the Department of Transportation’s implementing rules prohibit discriminatory treatment of persons with disabilities in air transportation. Since September 11, the Federal Aviation Administration (FAA) has issued directives to strengthen security measures at airline checkpoints and passenger screening locations. "

    Employee Medical Information and Emergency Evacuation Procedures

    Tax Items of Interest for People with Disabilities, Lucky L. Leong, CPA, Saint Louis,     Missouri  [ONLINE]

    Have You Heard?

    The GINI Research Fund: Call for Proposals

  ...Cleo  scout@skally.net

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Subject: [PPM] Polio Experience Network Spring 2002 P.E.N. & ink
   From: Scout <Scout@SKALLY.NET>

Washington State's Polio Experience Network Spring 2002 P.E.N. & ink is online:

http://www.polionet.org/pen&ink/PI40-Spr02-02.htm

CONTENTS:

Sharman’s News

"Combining Common Meds May Cause Stroke," By Michael Smith, MD

"Breath Savers: A report on two articles about breathing problems of some polio survivors," Reported by Elinor Young

"Polio & Post-Polio Syndrome," By Sheila Tohn, RN

Northwest Futures Unlimited

The P.E.N. & ink Link

"When the Pain is Invisible," By Lisa Copen

Web Finds [second one is a broken link]

 "Living With Disability: Being Politically Correct,"  By Dave Graham

  ...Cleo  scout@skally.net

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Subject: Dr. Silver's Newsletter
   From: Becky <rawrew@WVADVENTURES.NET>

Just wanted to pass on to anyone who is interested can request a "Newsletter" from the Internation Rehabilitation Center for Polio (IRCP) by e-mail.  Send a request to Anna Reubin's e-mail
agrubin@partners.org

You may go to

   http://www.polioclinic.org/

and view Dr. Silver's clinic web-site.  You will find this to be educational.......

I requested 30 copies of their Newsletter to distribute to my group members at our next polio meeting in November.  When I received the newsletter, they sent a request form for us to fill out with our name
and address, and they will mail out future Newsletters at no charge.

Dr. Silver's is moving her clinic to a new location scheduled around December 1, 2001.

Hope many of you were able to purchase and read her excellent book.

Take care,
Becky White

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Here are some additional newsletter sites:

Leicestershire Post Polio Network
http://www.post-poliouk.org/

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

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

Alabama-Florida-Mississippi Gulf Coast
http://members.aol.com/vmoore4474/index.html

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

Polio Connection Of America
http://www.geocities.com/w1066w/newsltr.html

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List postings: are here

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

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

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