_______________________________________________________________________________
Tipos de chat yahoo
Chat yahoo, reservado exclusivamente para miembros del foro. (Entrar pulsando en "chatear" dentro de la página de inicio, en el foro Post Polio-Amigos).
Chat Messenger yahoo. Podrás comunicarte con todo el grupo, tanto mediante voz como mediante escritura. También podrás utilizar tu webcam.
_______________________________________________________________________________
Las News
Esta es una nueva forma de recibir información o poder comunicarla.
Lugares:
1.- alt.support.post-polio. En este lugar podrás leer quincenalmente los recursos informáticos de Ernie Wollering. También encontrares en estas news mensajes contra los escalones enviados por Argón.
_______________________________________________________________________________
Irc. - Mirc
En esta forma podrás crear tus propios salones de charla, tanto abiertos como restringidos. También puedes participar de todos aquellos salones ya existentes, que son miles y miles de ellos.
Modo de empleo: En obras.
_______________________________________________________________________________
Webs
Página con un contenido de extraordinaria calidad: http://www.ott.zynet.co.uk/polio/lincolnshire/
_______________________________________________________________________________
Recursos Ernie
Quincenalmente aparece esta aportación fundamental al mundo de la polio de Ernie Wollering. En este documento renovado quincenalmente, se aporta información fundamental sobre webs, grupos, chat, etc. . Los documentos aparecen quincenalmente en las news alt.support.post-polio.
Last update
12/1/2003
Welcome! This is Part 1 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 mailto:[email protected] There are web
versions of this at http://rlis.com/kelownadays/ernie.htm
and
http://www.execpc.com/~epwoll/reslist.html
---------------------------------------------------------------
New/Added/Updated as of 12/1/2003:
Subject: Video Clip from the Today Show on PPS
From: [email protected]
If you missed the Today Show clip of Dr. Bruno giving an award to the
American Dreams TV show, the url is below. It'll be viewable all this
weekend.Jo
http://www.msnbc.com/m/mw/mw.asp?t=V&id=tdy_couric_polio_031114&sk=&pl=today_show&name=&opt=0
-----
Subject: INTERNATIONAL POST-POLIO TASK FORCE/Let's try again shall we?
From: Pat Smith <[email protected]>
Sorry about the first email, it came out a mess. Hope this one works
better as this is so important to us all.
Love and hugs,
Pat in TX
INTERNATIONAL POST-POLIO TASK FORCE
at the International Centre for Post-Polio Education and Research
Englewood Hospital and Medical Center
Englewood, New Jersey U.S.A. 07631
201-894-3724 / [email protected]
SENATOR ARLEN SPECTER PROCLAIMS 2004 "THE YEAR OF POLIO AWARENESS"
November 19, 2003 - Englewood, NJ: Last evening Pennsylvania Senator
Arlen Specter took to the floor of the United States Senate to announce
a resolution proclaiming November "Polio Survivors Month" and 2004
'The
Year of Polio Awareness."
"The purpose of Senator Specter's resolution is to promote awareness of
the need for polio vaccination and of Post-Polio Sequelae," said Dr.
Richard L. Bruno, director of The Post-Polio Institute and International
Centre for Post-Polio Education and Research at New Jersey's Englewood
Hospital and Medical Center. Post-Polio Sequelae (PPS) are the
unexpected and often disabling symptoms -- overwhelming fatigue, muscle
weakness, muscle and joint pain, sleep disorders, heightened sensitivity
to anesthesia, cold intolerance, and difficulty swallowing and breathing
-- that occur in 75% of paralytic and 40%% of non-paralytic polio
survivors about 35 years after the poliovirus attack. "Unfortunately,
those who were stricken with polio before vaccines were developed have
not received the proper help they have needed," said Specter in his
Senate speech.
"2004 is the fiftieth anniversary of the successful testing of the
vaccine that eradicated polio in the US," said Bruno, who is also
chairperson of the International Post-Polio Task Force. "But the
vaccine also caused those not lucky enough to have been vaccinated --
those who got polio -- to be forgotten." Most doctors -- and even many
polio survivors -- don't know that Post-Polio Sequelae are real and are
treatable.
Specter has been working with Bruno and the International Post-Polio
Task Force to draft legislation to educate and to provide needed
services to American's 1.63 million polio survivors. CNBC's "THE
NEWS
with Brian Williams" is scheduled to cover Specter's announcement and
broadcast a story about the cause and treatment of Post-Polio Sequelae
at 7:00 PM Eastern Standard Time on Wednesday, November 19th.
"Arlen Specter has become every polio survivor's senator, regardless of
the state in which they live," said Bruno. Specter will receive a
"David Bodian Memorial Award" from the International Post-Polio Task
Force for his work on behalf of polio survivors. Last week Bruno
presented a Bodian Award to NBC entertainment president Jeff Zucker on
NBC's "Today Show" in recognition of NBC's efforts to educate
Americans
about polio and Post-Polio Sequelae. "Singer Maureen McGovern will also
receive a Bodian Award for her special relaxation recording for polio
survivors that includes the new song 'I'll Never Know,' about
polio survivors slowing their super-stressed, Type A lifestyles," said
Bruno (http://www.maureenmcgovern.com/polio/postpolio2.htm). McGovern's
recording also includes Bruno's relaxation exercise, the "Two Breath
Time Out," from his forthcoming book How to STOP Being Vampire Bait:
Your Personal Stress Annihilation Program.
Said Bruno, "I am hopeful that 'The Year of Polio Awareness,' Senator
Specter's legislation, and NBC covering the story of polio survivors and
Post-Polio Sequelae will help to make the International Post-Polio Task
Force motto a reality: 'Every child vaccinated. Every polio survivor --
and doctor -- educated.'"
-----
Subject: Re: Creatine
From: Scout <[email protected]>
> My PPS doctor just suggested 5 grams morning and night to maintain
> muscle fiber and give me more energy. I thought I read there was some
> research studies on this for people with PPS - maybe Dr. Jacqueline
> Perry for one.
Barbara.. you can find two studies on the use of creatine for those with
neuromuscular disease by doing a search for creatine on PPS Central
http://www.skally.net/ppsc/search.html
I've found no studies regarding Polio survivors with PPS using
creatine.. quite a few showing questionable diagnostic abilities in
using creatine levels to diagnose PPS or level of PPS and that's about
it.
be very careful with this stuff and read up on the possible problems...
files like
http://www.healthandage.com/html/res/com/ConsSupplements/Warnings/Cr
eatinecs.html
need to be read and understood so YOU can evalute the risks vs possible
benefits according to your own individual health, conditions and
medications you take.
...Cleo [email protected]
-----
----------------------------------------------------------------
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
-----
There is a list of recent medical articles on post-polio syndrome at:
http://execpc.com/~epwoll/medindx.html
For information on the recently announced free Medline search
service go to:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi
-----
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://cumicro2.cpmc.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
-----
MEDLINEplus: Polio and Post-Polio Syndrome
http://www.nlm.nih.gov/medlineplus/polioandpostpoliosyndrome.html
---------------------------------------------------------------
National/International Organizations:
The G.I.N.I Research Fund has been set up by Joan Headley
and
Martin Wice, MD of Post-Polio Health International.
"Each year The G.I.N.I. Research Fund will make grants to advance
efforts to better understand the late effects of polio, to treat, and
to care for those who suffer from its effects"
To send contributions or request additional information write to:
The G.I.N.I. Research Fund
4207 Lindell Blvd. #110
Saint Louis, MO 63108-9895
-----
The International Polio Network's (I.P.N.) own web-site, The
Post-Polio Task Force Information Center at:
http://www.post-polio.org/
is now available. 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 among the post-polio
community world-wide. I.P.N. publishes the quarterly Polio Network
News and the annual Post-Polio Directory.
The International Polio Network (IPN) has placed their Directory 2000
on the web:
http://www.post-polio.org/ipn/locate.html
these pages allow you to locate PPS familure physicians, clinics,
other health professionals AND support groups by State and City.
-----
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
-----
"Overuse is falling out of favor. Now we know there is
an
inflammation with possible persistent infection. But that may or may
not be integral to post-polio weakening. Years of over stressed motor
neuron activity, because of increased sprouting, could also be a factor.
Or maybe muscles are no longer able to attract nerve attachments because
they've lost the ability to produce surface attachment proteins. There
are a lot of possibilities.
The NIH are using more government money to fund PPS research in this
country than anyone else. Hopefully, eventually, this work will help
find answers and therapeutic approaches to PPS."
Thanks......Eddie
---------------------------------------------------------------
Regional/Local Organizations:
There are a great many regional and local support groups and
organizations. So many in fact, that there is no longer room to list
them all here. The list that was here is available at:
http://www.execpc.com/~epwoll/reslist.html#Reg
Or you can use one of the locator sites in the next
section.
---------------------------------------------------------------
Health Care Professional and Support Group Locators:
International Polio Network (IPN) coordinated by Gazette
International Networking Institute (GINI)
http://www.post-polio.org/ipn/locate.html
-----
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
-----
POLIO CONNECTION OF AMERICA
http://www.geocities.com/w1066w/medical.html
-----
Physiatrists: American Academy of Physical Medicine and
Rehabilitation
http://www.aapmr.org/
-----
Polio Experience Network "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
-----------------------------------------------------------------------
Books/Videotapes/Multimedia
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 at: http://www.execpc.com/~epwoll/Books.html
IPN: http://www.post-polio.org/ipn/books.html
Upcreek CoOp: http://members.tripod.com/upcreek/bookstore.htm
-----------------------------------------------------------------------
Upcoming Events:
Also see: http://www.skally.net/ppsc/event.html
Last update 12/1/2003
Welcome! This is Part 2 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 mailto:[email protected] There are web
versions of this at http://rlis.com/kelownadays/ernie.htm
and
http://www.execpc.com/~epwoll/reslist.html
----------------------------------------------------------------------
Forums - Newsgroup, Mailing Lists, Online Chat Rooms:
There is a newsgroup named alt.support.post-polio. You can access
this through your newsreader news:alt.support.post-polio
-----
There are a number of active mailing lists.
The lists are complimentary and each has a different focus. I've
attempted to describe that focus with a short description here. You're
urged to read the more descriptive information below and actually try
out one or more of the lists to get a better idea of what each list is
like.
[email protected] - Caring support in a friendly
environment.
[email protected] -
"A laid-back low-key, no-beefs list"
[email protected] - Medical aspects of PPS.
[email protected] - Support group
information exchange.
For additional lists see: http://www.skally.net/ppsc/ppsc-l.htm
and http://groups.yahoo.com/search?query=polio&sc=0&sg=0&ss=1
-----
The St. John's University list is a private moderated
subscription
based forum. Subscription to this list is conditional on accepting and
working within a set of guidelines provided at the time of
subscription. 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 send an e-mail to [email protected] with
a blank subject line and sub Polio yourfirstname yourlastname in the
body of the message.
The SJU Polio Archives are composed of posts post to this forum from
1/1/98, to the present.
There are 2 ways to access the forum's archives:
1. Point your browser to the following URL address:
http://maelstrom.stjohns.edu/archives/polio.html
2. Send an email command to: [email protected]
In the message area write: INDEX POLIO
-----
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 "[email protected]". Effective 8
May, 1999, this list has moved to a NEW home - One with many more
features and flexibility at: "[email protected]". 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:
"[email protected]" or by going to the Web Site
at
"http://www.yahoogroups.com/list/post-polio" and registering
on-line!!
Thanks! Tom
-----
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 to Post-Polio-Med send an
e-mail to:
[email protected]
in the message body put:
subscribe post-polio-med YourFirstName YourLastName
Posts to the list are public, archived and searchable and can be
accessed from the following link:
http://maelstrom.stjohns.edu/archives/post-polio.html
For more info on Post-Polio-Med, go to the Post-Polio-Med Web Page:
http://www.skally.net/ppmed/
-----
A polio support group mailing list has been created for you: its
listaddress is [email protected].
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 <[email protected]>
Posting: Sending a message to [email protected] 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 Room 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 [email protected]
-----
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
-----
Subject: Polio Chat Room
From: Peggy Bran <[email protected]>
Hi Gang, how is everyone this fine day. I've noticed a number of
new faces in our family lately, may I hold out my hand in welcome to you
all. I thought I should let you all know that the Polio Support Chat
Room on AfterNet is alive and well and we sure would like to see you
drop by for a visit. I'm there every night from 7pm Pacific time.
Anyone who would like directions or help on finding the Chat Room
please email me and I'll send you the directions.
Hope to meet you in Polio Chat.
Peggy Bran aka Flakes of Polio Chat
-----
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, [email protected]
-----
Subject: Christian E Group
From: "Tommy" <[email protected]>
We consist of 24 (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,
Tommy
-----
Subject: [post-polio] great webstie and chat room
From: [email protected]
Hi everybody!
I want to share with all of you a website that is loaded with PPS
info:
PPS World Support Group
PPSR - Post Polio Syndrome Resources
Carl Cortez - PPSR Site Owner/Administrator
Site URL - http://ppsr.com
Address: 202 Irma St., Houma, La 70360
Email: Mailto:[email protected]
Phone: 504-868-8129
ICQ #: 7848945
Chat Room: StarChat server #A-PPSR-HOME
On Weds at 8pm EST we have chat time, and soon will have more times.
The room is always available, and if I am online I can help out. FYI
my ICQ nick is TYGA and my AOL IM nick is tygabutton. Hope to see some
of you there!
Cheryl
-----
For additional information on Forums see:
http://www.zynet.co.uk/ott/polio/lincolnshire/directory/forums.html
and
http://www.skally.net/ppsc/ppsc-l.htm
---------------------------------------------------------------------
Newsletters:
Subject: Rancho Los Amigos Post-Polio Newsletter October/03
From: lili g <[email protected]>
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
-----
Subject: Florida E.C. Post-Polio Support Group's Nov-Dec 2003 Newsletter
From: Scout <[email protected]>
Florida East Coast Post-Polio Support Group's Nov-Dec 2003 Newsletter
is online:
http://home.iag.net/~bgold/nov_dec2003.htm
CONTENTS:
Meeting Notice
>From Barbara
Post-Polio Update, May 2003, With Susan L. Perlman, M.D., Reported by
Mary Clarke Atwood
The Top 10 Secrets to a Stress-Free Personal Life, Author Unknown
The Magic Food - Eat a Banana, Author Unknown
Important Warning - #77
Never Drive in the Rain with Your Cruise Control On
That Golden Age
...Cleo [email protected]
-----
Subject: Post-Polio Support Group, Ireland,Autumn 2003 Newsletter online
From: Scout <[email protected]>
Post-Polio Support Group, Ireland, Autumn 2003 Newsletter is online:
http://www.ppsg.ie/newsletter23.htm
Contents:
Chairperson's update
>From the Editor
Valerie, Lady Goulding, Obituary
Fund-Raising News
Bray/Wicklow/Dublin Social Gathering
Jackie's holiday to Italy - The Outcome
The Irish Wheelchair Association / National Council for the Blind of
Ireland
Peer Counselling Programme
Responding to violence against women with disabilities
Positive Points of Using Wheelchair, Source: Post-Polio Network (NSW)
Inc. Network
City Centre Tub
Toll Bridges and Disabled Drivers
Mobility Scooter Launch (Advertising article)
How to record an oral History of your Experiences and your Thoughts
about Polio, By: Mary Le Clair, Reprinted with kind permission
Post-Polio
Network (NSW) inc. Network News.
Research
Cork Stress Management Week-end
...Cleo [email protected]
-----
Subject: N.C. Florida Post-Polio Group's Nov-Dec. 2003 Newsletter
From: Scout <[email protected]>
North Central Florida Post-Polio Support Group's Nov-Dec 2003
Newsletter is online:
http://www.postpoliosupport.com/polio%20post%20news.htm
CONTENTS:
President's Letter - Nov/Dec, 2003
Summary of the October Meeting (DNA Research)
Easing Holiday Pressure!! From "Senior Friends Newsletter"
Research Study: Development of a Test Prior to Statin Use by Carolyn
Raville
Post Polio Lab Experience by Terry R. Mitchell, PhD
Accepting Things You Never Thought You Could By Mary Westbhrook:
from Polio Particles, From Network News NSW Australia Nov. 2001
Polio Above the Neck, An excerpt from an article by Dr. Susan Perlman in
the Newsletter of the Post Polio Support Group of Orange County, meeting
in Illa Park, California.
Laugh Your Way to Better Health, from Laugh your way to better health,"
July 2001, Optum
High Cholesterol: (Hyperlipidemia), Reprinted from the website of
Advanced Cardiac Specialists
Food for Thought: Swallowing Problems by Terry J. Moltzen, MS, CCC-SLP
Swallowing and GERD By Steven Martin,MD
Some Holiday Tips by Grace Young, MA, OTR
How to Take the Stress Out of the Holidays, author unknown
Good Nutrition, the Give You Give Yourself by Joy Semelka
Tricks with "Sticks" by Wilma (Willie) B. Metzger
Letters
Member Notes
...Cleo [email protected]
-----
Subject: Post-Polio Health International's Summer '03 Newsletter
From: Scout <[email protected]>
Post-Polio Health International's Summer '03 Newsletter is online:
http://www.post-polio.org/ipn/pph19-3.html
CONTENTS:
To Brace or Not to Brace? Improving Function by Holly H. Wise, PT,
PhD, and Jenny Adams, CPO, Coastal Post-Polio Clinic, Charleston, South
Carolina [ARTICLE ONLINE]
>From the Editor [ARTICLE ONLINE]
The West Nile Virus Infection: Like and Unlike the Poliovirus Infection
by K. Ming Chan, MD, FRCPC, and Zoe W.M. Doyle, Division of Physical
Medicine & Rehabilitation, Center for Neuroscience, University of
Alberta, Edmonton, Canada [ARTICLE ONLINE]
New SSA Ruling for Polio Survivors with "Post-Polio Sequelae" by Joan
L. Headley, MS, Executive Director, Post-Polio Health International
[ARTICLE ONLINE]
Update on Research Funded by The Research Fund of Post-Polio Health
International [ARTICLE ONLINE]
Foods that Shutdown Stress by Janice Knight Hartman, Baltimore,
Maryland [ARTICLE ONLINE]
Mozo Shoes: Easy on the Sole by Debbie Hardy, Volunteer Editor,
Whittier, California
Advocate Retires: Stanley K. Yarnell, MD [ARTICLE ONLINE]
Readers Requests
Scooters Purchased
...Cleo [email protected]
-----
Subject: WNY Polio Survivors Group Sept 2003 Newsletter
From: Scout <[email protected]>
Western New York Polio Survivors Group's Sept 2003 Newsletter is online:
http://www.wnydf.bfn.org/reference/journals/polio/polio03.sep.html
CONTENTS:
Meeting Information
Don's Book Review: "Broken Yesterdays", By Joseph William Meagher
(2003)
...Cleo [email protected]
-----
Subject: Southern California June 2003 PPS Manager is online
From: Scout <[email protected]>
Southern California June 2003 PPS Manager is online:
http://members.aol.com/_ht_a/ppsman/PPSManager.html
CONTENTS:
>From the Editor
Breathing Problems Caused by Post-Polio Syndrome By Lisa S. Krivickas,
MD
Followup Questions Rick asks Dr Oppenheimer
Polio Survivors Foundation: Giving and Receiving since 1978
Safe at Home 'How to' video, Produced by the International
Rehabilitation Center for Polio at Spaulding Rehabilitation Hospital
It Works for Me: Bunny and Sylvia offer advice
Special events : Salk Forum, Riverside Picnic
The latest PPS meeting reports for Riverside, San Bernardino and San
Diego Counties
...Cleo [email protected]
-----
Subject: The Winter 2002 issue of IVUN News is online:
From: Scout <[email protected]>
The Winter 2002 issue of IVUN News is online:
http://www.post-polio.org/ivun/ivun16-4.html
CONTENTS:
Breathing and Pregnancy
Managing Noninvasive Ventilation: A Portuguese Experience by João
Carlos Winck, MD, and Miguel Gonçalves, PhT
Body Brace by Julie Levine
My Experience with Noninvasive Ventilation by Steve White
Interfaces, Ventilators, and Supplies
Calendar 2003
...Cleo [email protected]
-----
Subject: Post-Polio Network (NSW) October 2002 Newsletter
From: Scout <[email protected]>
Post-Polio Network (NSW) October 2002 Newsletter is online:
http://www.post-polionetwork.org.au/news/ppn55.html
CONTENTS:
President's Corner by Gillian Thomas
Post-Polio Posts
Happy 10th Birthday to the Hunter Area Support Group
...Cleo [email protected]
-----
Subject: Newsletter
From: msn/w1066 <[email protected]>
Friends,
The Polio Connection has posted our latest newsletter Oct 02 on our
website. We suggest you visit our site and look it over.
Note also that we have Dr Julie Silver book " Post Polio Syndrome in
stock. If you desire a copy at our very reasonable price secure our
latest newsletter which you can get by sending us your name, address
with Zipcode and filling out the order page
George
POLIO CONNECTION OF AMERICA
http://www.geocities.com/w1066w
Remember to support PPS research
-----
Subject: Antelope Valley Polio Survivors Support Group Articles
From: Scout <[email protected]>
Antelope Valley Polio Survivors Support Group New Articles Online:
Polio Survivors Return to Battle, Julie Silver, MD, From Rehab
Management, January 2002
http://www.avpoliosurvivors.org/feature_article.htm
[note.. original of this article has a GREAT picture of Dr. Silver:
http://www.rehabpub.com/features/12002/5.asp and more articles by
Dr. Silver can be found via http://www.skally.net/ppsc/search.html
search for Silver]
Protecting Your Arms Will Keep You Moving, Julie Silver, MD, From
Accent on Living, Spring & Summer, 2000
http://www.avpoliosurvivors.org/article2.htm
How to Prevent Further Disability in Polio Survivors, Julie Silver,
MD,
>From Accent on Living, Summer, 1999
http://www.avpoliosurvivors.org/article3.htm
...Cleo [email protected]
-----
Subject: [PPM] Rehabilitation Gazette Winter 2002 is online
From: Scout <[email protected]>
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 [email protected]
-----
Subject: [PPM] Polio Experience Network Spring 2002 P.E.N. & ink
From: Scout <[email protected]>
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 [email protected]
-----
Subject: [PPM] Winter 2002 Newsletter: Post-Polio Clinic &
Support
Group, Cincinnati, Ohio
From: Scout <[email protected]>
Polio Connection, Post-Polio Clinic and Support Group, Cincinnati,
Ohio's Winter 2002 Newsletter is online
http://home.fuse.net/PolioConnection/Newsletters.html
CONTENTS: [note.. all of these are linked to off site web sites and
clicking on the "From the Editor" brings up TWO windows of
advertising
:( ]
>From the Editor
Dr. Albert Sabin honored by new statue at Children's Hospital
Misunderstood Prescription Drugs and Needless Pain
Fine wheeling in Great Britain [not linked]
Acessible Journeys
Flying Wheels
Nautilus Tours
Oxygen is NOT for Hypoventilation in Neuromuscular Disease
E.A. Oppenheimer, MD, FCCP [IVUN News - Spring 2000]
Inclusion Network
Dr. Martin on Post-Polio swallowing and GERD [not linked]
...Cleo [email protected]
-----
Subject: [PPM] PPRG Dec. 2001 Newsletter is online
From: Scout <[email protected]>
Post Polio Resource Group of Southeastern Wisconsin's Dec. 2001
Newsletter is online
http://www.geocities.com/HotSprings/4760/SpiritDec2001.htm
CONTENTS:
>From the President's Desk
Dining Out : February Luncheon
Coming Attractions : Meetings and Conference.
Netnews: Steps Taken to Ensure New Security Requirements Preserve
and Respect the Civil Rights of People with Disabilities; Emergency
Evacuation for People with Disabilities; The National Center for
Emergency Planning for People with Disabilities (NCEPPD)
PPRG Conference 2002: We're All In This Together
PPRG's Fall Election Results
Our Members in the Spotlight
The Disabled in a Disaster By Henry Holland
Cincinnati's Stealth Polio Epidemic (Part 2; continued from Sept.
issue) By Richard Bruno, PhD
In Memory of Dr. Saltzstein
A Soldier's Story by Sidney M. Fox
The Marketplace
...Cleo [email protected]
-----
Subject: PPS World Support Group Newsletter for December
From: Carl Cortez <[email protected]>
Hello Everyone,
The PPS World Support Group would like to wish you all the best of
the Holidays, below is our link of Decembers Newsletter.
http://ppsr.com/dec2001news.html
Seasons Greetings,
Carl
--
Carl Cortez - President
PPS World Support Group: http://ppsr.com/ppsworld.html
InfoPolio Message Board: http://groups.yahoo.com/group/infopolio
-----
Subject: [PPM] Michigan Polio Network Fall 2001 Newsletter
From: Scout <[email protected]>
The Michigan Polio Network Fall 2001 Newsletter Polio Perspectives is
online:
http://www.mipolio.org/newsltr/fall2001/indexnwsltr.html
CONTENTS:
>From the Chair- by Jerry Hazel
Welcome to the Conference- A Poem by Bonnie Levitan
Newcomers- What to Expect from Post-Polio and the Conference
A Family Affair: The Impact of Post-Polio on Family Relationships
-from page 4 PoliOntario January 1999 - VVolume 6, Number 2
Post Polio Syndrome- New Problems from an Old Disease Reprinted
from the Mayo Clinic Health Letter, May 2001
...Cleo [email protected]
-----
Subject: Dr. Silver's Newsletter
From: Becky <[email protected]>
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
[email protected]
You may go to
http://www.polioclinic.org
or http://www.polioclinic.com/index2.htm
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
-----
Here are some additional newsletter sites:
Leicestershire Post Polio Network
http://www.post-poliouk.org/news.htm
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
PoliOntario Newsletters
http://www.dimes.on.ca/Programs/postpolio/poliontario.html
Warm Springs [Georgia] FDR Support group
http://www.rooseveltrehab.org/PostPolio%20Newsletters.htm
San Diego Post Polio Notes
http://members.tripod.com/sandiego_polio/pastppn.htm
Polio Connection Of America
http://www.geocities.com/w1066w/newsltr.html
Last update
12/1/2003
Welcome! This is Part 3 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 mailto:[email protected] There are web
versions of this at http://rlis.com/kelownadays/ernie.htm
and
http://www.execpc.com/~epwoll/reslist.html
---------------------------------------------------------------------
Additional WWW Resources and Information:
Subject: Newsday.com - FDR's Polio Questioned
From: rmauro <[email protected]>
interesting story!
http://www.newsday.com/news/health/ny-hsfdr313519634oct31,0,2340785.story?coll=ny-health-headlines
-----
Subject: P.B.S. End of Polio Campaign
From: "Diana in Mo." <[email protected]>
This was on Bill Moyers, "Now" this evening. Thought it would be of
interest to anyone who didn't get to see it.
http://www.pbs.org/now/science/endofpolio.html
Di Hardin
-----
Subject: Old Medical Records
From: "Judith Pipher" <[email protected]>
You may be in luck. If your hospital does not have the records, there
is a place out in California that has been acquiring medical records
from all across the country and they might be able to help you.
This is from our March, 2001 newsletter (PPRG of SE Wisconsin):
Old Records
The following is in answer to someone wanting to know how to get old
polio records:
Copy this:
It is hereby requested that the hospital medical records of (your name
here) , (d.o.b.),(SocSec#), be made available to self at my current
address, (address, telephone #). My hospital of treatment was (name of
hospital). Dates of treatment: Approximately (dates from & to). Also
(second treatment facility). Dates of treatment ( from and to)..
You then bring your typed statement to a Notary Public who signs and
dates and you sign and date in the presence of the Notary.
Mail this to: Health Information Services// P O BOX 1438// San Jose, CA
95109.
This is an entity that stores old medical records. Even from all the way
across the country. They charged me $25.36 for the service. Exerpted
from The Seagull , Jan. 2001
Good luck with your search!
- Judith
-----
Subject: PPS Books and Find a Doctor
From: Jann Hartman <[email protected]>
"Managing Post Polio: A Guide to Living Well with Post Polio"
by Lauro S. Halstead
"Post-Polio Syndrome: A Guide for Polio Survivors and Their Families"
by Julie K. Silver
"The Polio Paradox: What You Need to Know"
by Richard L. Bruno
"Post-Polio Syndrome" textbook (good book for doctors)
by Lauro S. Halstead, Gunnar Grimby
Finding a PPS doctor or clinic:
http://www.post-polio.org/ipn/locate.html
Hope this is helpful, Jann
-----
Subject: Review Dr. Silver's new book.
From: "Dianne De Paul" <[email protected]>
Thought you might be interested in this.
http://my.execpc.com/~epwoll/Syndromezzz.html
Dianne
-----
Subject: "My life with an iron lung" BBC
From: "GG Genereau" <[email protected]>
>From Chris Rutty on the Polio History List:
I thought members of this group might be interested in this story
that appeared on the BBC website yesterday. Just click on the link,
http://news.bbc.co.uk/1/hi/health/3182096.stm
** 'My life with an iron lung' **
John Prestwich, paralysed from the chin down, is 64 - and holds the
dubious distinction of being the longest surviving beneficiary of
iron lung technology in the UK
http://news.bbc.co.uk/go/em/fr/-/1/hi/health/3182096.stm
-----
Subject: The Impact of Fear of Falling on Health Related Quality of ...
From: Scout <[email protected]>
Of quick note.. I don't see that this study has been published in any
journals yet:
The Impact of Fear of Falling on Health Related Quality of Life in
Persons with Post-Polio Syndrome
-2003 Legters, Barber, Tomecsko, Kitchen,, Urban - Gannon University
http://www.gannon.edu/survey/pps/
...Cleo [email protected]
-----
Subject: Jann's latest article
From: Linda Wheeler Donahue <[email protected]>
The current newsletter of Post-Polio Health International is now
available online, Summer 2003, Vol. 19, No. 3 edition.
Check it out and read Jann Hartman's excellent article: "Foods
that Cut Down Stress." The article is succinct, cuts right to the
chase, and gives practical information.
Go to: http://www.post-polio.org/ipn/pph19-3d.html#food
Congratulations, Jann!
Linda D.
-----
Subject: Polio Pals
From: "Jon Schoen" <[email protected]>
It has been a long time, but I still have Polio Pals Place. It can be
accessed at http://polkcity.net or http://polkcity.net/polio/. There is
no need for www in the address as I am an ISP. The main thing I offer is
free web pages for polio survivors. Because I try to do too much, like
many of us, it does take me some time to get things done.
Love n' Hugs
Jon
Jon A. Schoen
http://polkcity.net
[email protected]
-----
Subject: Physiatrists
From: Pat Grimes <[email protected]>
Hi; Today in our local paper "Journal
Star", published in Lincoln,
Ne. there was a good article on physiatrists. In the article it
gave
two websites to locate physiatrists in your area. The web sites are:
http://www.e-aapmr.org/imis/imisonline/findphys/find.cfm and
http://www.physiatry.org/field/findone.html
The first one is the best. It gave me a listing of 13 in Neraska, where
the second listing only gave 2 listings -- who were already on the first
list. Pat Grimes
-----
Subject: PPS and the SSA
From: Tommy <[email protected]>
I'm sure you probably know about this but I just ran into it by accident
and thought I would pass it on--just in case. :o)
http://www.ssa.gov/regulations/articles/ssr-03-1p.htm
"But You Look So Good"
~One Day at a Time - Sweet Jesus~
Tommy Lynn
http://www.sharingjesusministry.org/PPSers&JESUS.htm
-----
Subject: Feldenkrais
From: Marilyn Geist <[email protected]>
I've done some Feldenkrais work. It's subtitled "Awareness Through
Movement," and awareness is really the key. It is not a
"workout" at
all. The movements are very slow and gentle (some of it can even be
done just in the imagination). It is intended to make moving easier and
to relieve pain. I find it especially helpful when I seem to be
overusing a particular muscle in doing a routine movement (reaching for
the keyboard, moving the mouse, looking at the floor, putting away the
dishes, etc.). It teaches me to involve more of my body in the
movement, thus relieving the stress on a specific muscle. I think it's
a great approach to people with PPS. Once you learn the techniques,
they are very easy to continue on your own.
Marilyn
-----
Subject: Social Security Administration
From: [email protected]
I wanted to make sure you have seen this ruling by the social
security administration effective July 2, 2003. I went to their
sight and it looks like Post Polio Syndrome people like me are
finally going to get their disability much easier. I fought for 4
years to get mine. When I finally got my disability, I had taken
much information to the law judge myself, to educate him on
PPS. I went to the Social Security Administration's web sight
to see the information.
http://www.ssa.gov/OP_Home/rulings/di/01/SSR2003-01-di-01.html
Connie Umbarger
[email protected]
-----
Subject: Post-Polio Health International
From: "gini_intl" <[email protected]>
Gazette International Networking Institute (GINI) has changed its
name to Post-Polio Health International and has developed a new
membership structure. Post-Polio Health International will continue
to respond to the needs of ventilator users through its affiliate,
International Ventilator Users Network.
The new name, Post-Polio Health International, clearly focuses on
living with the late effects of polio and reaffirms an ongoing
interest in international issues. 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.
The new membership structure is designed to strengthen Post-Polio
Health International's ability to advocate for its constituents.
Current newsletter subscribers are automatically members of
Post-Polio Health International and/or its affiliate International
Ventilator Users Network.
Not already a subscriber?
Check out http://www.post-polio.org/order.html to become a member
today.
Please update your records accordingly:
GINI is now Post-Polio Health International.
Thank you.
Post-Polio Health International (PHI)
4207 Lindell Blvd #110, Saint Louis, MO 63108
[email protected]
www.post-polio.org
314-534-0475
314-534-5070 fax
-----
Subject: FYI: Post Polio on C-Span
From: Jann Hartman <[email protected]>
If you missed it on TV, you can go to http://www.c-span.org and search
for: polio
It is a video that will play on your computer:
Daniel Wilson, Muhlenburg College (PA),
History Professor, History of Polio
5/17/2003: Washington, DC: 56 min.
As Carolyn said, Daniel is a polio survivor. The video played for me on
a program called Real One, but I was having trouble with the volume. My
speakers are messed up. So, I'm hoping to listen to it later.
Jann, polio 1953, pps since about 1985
My Polio (Short) Story:
http://www.geocities.com/arojann.geo/poliostory.html
-----
Subject: PPS Promo on TV
From: "Jann" <[email protected]>
The PSA is here: http://www.davidmorse.org/qt/psa/
Hope this helps! Jann
-----
Subject: New Directory at www.post-polio.org
From: gini_intl <[email protected]>
International Polio Network is proud to announce that the 2003
Post-Polio Directory is available online at
http://www.post-polio.org/ipn/locate.html
International Polio Network (GINI), http://www.post-polio.org/ipn/, the
compiler of the Directory requests that you send us
([email protected]) names and phone numbers of health professionals
and support groups that you think should be included. We will follow up
and ask if they want to be listed.
We have had some HEALTH PROFESSIONALS who choose not to be listed
because they are so busy and/or are not taking new patients. We
annually (by March 1) update the whole directory by asking everyone to
re-confirm their information and to re-confirm their commitment to
helping polio survivors. And, we continually make changes to the
Directory throughout the year.
You can order at print version of the directory to be shipped to you
with the form at http://www.post-polio.org/order.html
We welcome your suggestions.
Joan L. Headley
Gazette International Networking Institute
coordinator of
International Polio Network (IPN)
Int'l Ventilator Users Network (IVUN)
4207 Lindell Blvd #110 Saint Louis, MO 63108
[email protected]
www.post-polio.org
314-534-0475
314-534-5070 fax
-----
Subject: Neat site
From: Tommy <[email protected]>
http://www.postpolioinfo.com/PostPolio/Index.htm
One day at a time - Sweet Jesus*~~~~
Tommy
-----
Subject: Nutrition for PPS/chronic condition
From: "JKH <[email protected]>" <[email protected]>
--- skyrae@w...
wrote:
BTW are their
> any special diets that will help with this? I don't need to lose
> weight. I am very small. I have found some pain relief in
being
> careful of allergic foods which cause arthritis flares.
Hi, Jenna!
I would suggest that you might want to read or get a copy of: "Power
Nutrition for Your Chronic Illness" by Kristine Napier, MPH, RD, 1998.
This is a very informative and helpful book with easy, tasty recipes
for those dealing with a variety of chronic illnesses.
The International Polio Network has had several good articles in
their Polio Network News on PPSers who have discovered the dietary
plan that works for them (as each of us has different needs). All
stress the need for the proper amount of good quality protein
throughout the day, starting with breakfast. And, the need for all
protein, carbs (whole grains) and proper fats. Fad diets are more
harmful than good.
For some good basic information and links, I have a webpage for
anyone interested:
http://www.geocities.com/arojann.geo/ppsnutrition.html
Hope this helps! Jann
-----
Subject: Post-Polio Syndrome, Geriatric Times, Dr. Perlman
From: Scout <[email protected]>
Post-Polio Syndrome, Part I: Definition and Diagnosis
http://www.geriatrictimes.com/g021031.html
Post-Polio Syndrome, Part II: Treatment Strategies
http://www.geriatrictimes.com/g021231.html
by Susan L. Perlman, M.D.
Geriatric Times September/October 2002 and November/December 2002
...Cleo [email protected]
-----
Subject: Polio Eradication
From: "dowdeswell" <[email protected]>
Hi!
You will be well aware of the WHO campaign to eradicate polio.
Rotary clubs throughout the world have projects to raise funds to
help. My club of Wanganui Daybreak (in New Zealand) has one
such project and I am writing to ask if you would look at our sites
and consider a link to them from yours.
https://www.delphinium.co.nz/SeedsOfLove.htm
http://www.rotarydaybreak.wanganui.info
Kind regards
Terry Dowdeswell
Dowdeswell's Delphiniums
Wanganui
New Zealand
~~~~~~~~~~~~~~~~~~~~
Proud to support World Wide Polio Eradication
You can help! See the web sites below:
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
https://www.delphinium.co.nz/SeedsOfLove.htm
http://www.rotarydaybreak.wanganui.info
-----
Subject: Gleaning's Snapshots
From: Mary Ann Hamilton <[email protected]>
Hi Eveyone, I have the book,,"Snapshots - Polio Survivors
Remember""
from Nebraska Polio Survivors Association, the Nebraska support group.
I love it. It is so expressive in conveying our experiences. I
really
recommend it. Nancy Baldwin Carter put this book together for the
Nebraska Conference. Nancy says, "Here we have individuals revealing how
it felt to be faced with difficulties that most people today will never
experience," And yet, when these survivors and those who support them
tell us what it took to get through these tough situations, what spurred
them on, everyone can relate. We've all had challenges, adversities. How
we deal with them makes all the difference. In a way, these are
everybody's stories." The book is a soft cover, coil bound book and is
available for $12 (including postage) through the Nebraska Polio
Survivors Association, P.O. Box 45139, Omaha, NE 68145 Contact, Marian
Barnett, [email protected]
Mary Ann Hamilton
ColoradoPPConnection
-----
Subject: Book about Some of the Symptoms of Post Polio Syndrome
From: "Nana" <[email protected]>
Would you check out my website and my book and consider giving me
a link?
http://www.NanaNeedsaNap.com
My name is Beryl and I got polio when I was four, I was totally
paralized but then over time I had a full recovery, went on to lead a
regular life only to find that in my early forties I was experiencing
some fairly significant symptoms. I'm the "typical" Type A
overachiever as most others who had polio have been classified. We had
to work harder than ever just to get things done in life so we adapted
ourselves to never quitting and very hard work.
I wouldn't talk about polio or post-polio syndrome to anyone. Even
after I had to quit my job I would not discuss the symptoms that I was
experiencing. This meant that those closest to me didn't really
understand what was happening to me and I realized how unfair this was
one day when my 7 year old granddaughter asked me about working out at
a local gym. It was at that time I decided if I couldn't talk about the
symptoms of post-polio syndrome, then I'd write a book about the
symptoms and give the book to my family and friends.
Dr. Christopher Howson, Director of Global Programs, The March of
Dimes Birth Defects Foundation in White Plains, NY read my book
which is called, Nana Needs a Nap, and he said, "...It is
excellent...an example of health education at its best."
But what I really need is your help??
Would you please pass this on to anyone who you think would benefit
from learning more about the symptoms of post-polio syndrome and ask
them to check out the website at www.NanaNeedsaNap.com . They
can easily send feedback about my website or book by clicking on the
"Contact Us."
Take care and treat yourself well,
......Beryl http://www.NanaNeedsaNap.com
--
Subject: New pps book to help bridge the family/friends
communication gap
From: Dianne Glassburn Sandau <[email protected]>
There is a book on the market now that promises to be quite charming
and can help us "get through to others' what we w/ PPS are going
through, using colorful pictures and pitched to a kid's eye view. You
can have a look at the author and get a taste of her style. I want one
for my granddaughter, but before I give it to her, I think I'd like to
show it to about 90 other people as well. :o) Here's the URL:
http://nananeedsanap.com
Dianne Glassburn Sandau
[email protected]
-----
Subject: [PPM] New Brochure from the International Polio Network
From: Scout <[email protected]>
NEW BROCHURE FROM INTERNATIONAL POLIO NETWORK ...
"Information about the Late Effects of Polio ... for polio survivors,
for families and friends, for health professionals," is now available
in print and online. The printed copies are comprised of three
sections that are easily detached, to be given to the appropriate
individuals.
http://www.post-polio.org/ipn/aboutlep.html
...Cleo [email protected]
-----
Subject: Supplement Creatine for ALS
From: lili g <[email protected]>
Supplement for Lou Gehrig's -- Full-Length Doctor's Interview
http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=4240
-----
Subject: Web address for EBay Disability Resources
From: [email protected]
http://pages.ebay.com/theme/disability.html
Interesting source for a lot of things for us. This includes
everything from vans, to wheelchairs and everything in between. It is
not easy to find through their normal site so thought I'd pass it along.
Please realize a lot of it is auction, not just sales.
Dave in Oregon
-----
Subject: Linda Wheeler Donahue online
From: Jann Hartman <[email protected]>
Forgive me if this was mentioned, but I didn't want anyone to miss
Linda's great article, now online:
"Transitioning to a Wheelchair: An Exploration of Our Fundamental
Fears" Linda Wheeler Donahue, Professor Emeritus of Humanities and
President, The Polio Outreach of Connecticut, Southbury, Connecticut
([email protected])
http://www.post-polio.org/ipn/pnn17-4.html#trans
-----
Subject: New Mobility Magazine
From: lili g <[email protected]>
New Mobility Magazine is online with Dr. Richard Bruno and post-polio
forum.
Go to http://www.newmobility.com/
Highlight `ask an expert`..
Scroll down to Dr. Bruno and read his advice for the present month as
well as all months past. Very good info for PPSers.
They also send snail mail subscription for those who
like to curl up in bed to read.
xxxooomoi..Lgg
-----
Subject: PPS Overview Research Paper
There is an interesting research paper which gives a good overview
of PPS available at:
http://interwork.sdsu.edu/uploads/arp685a/sprice/Research_paper_E_Scherling-Morales.doc
It's in Microsoft Word (doc) format.
-----
Subject: A BALANCED WAY OF LIVING:COPING WITH PPS
From: "vicki mckenna" <[email protected]>
Hi Here with my newsletter which you can also find on
http://www.share.force9.co.uk I hope you find it helpful! Best
wishes,
Vicki McKenna
-----
Subject: Pamphlets About Post-Polio Syndrome
From: lili g <[email protected]>
Dear all,
G.I.N.I. has sent with their Rehab Gazette newsletter September 2001,
Vol 41, No 2 two pamphlets about post-polio. This is exactly what we
need to take with us to new docs ..old docs..or anyone else who needs
info about our condition and exactly what pps is all about. This
material is excellant n all it's explanations without my reams of
notes and copies of web info.
These two pamphlets are a product of the March of Dimes conference in
May of 2000 at Warm Springs, Ga.
For copies for your docs , family and friends, write,
call or e-mail G.I.N.I.
They are available for $1.00 (shipping and handeling)
or for a donation.
[email protected] www.post-polio.org
4207 Lindell Blvd. #110
Saint Louis , MO.63108-2915 USA
314/534-0475 314/534-5070 fax
Spread the word about PPS and all it means to us..as we continue to
educate ourselves and others so that best care possible is made
available to us..the pioneers..<smiles>
xxxooo,
Lgg
-----
Subject: Report targets best practices for postpolio syndrome
From: Carl Cortez <[email protected]>
FYI,
Report targets best practices for postpolio syndrome
http://www.ama-assn.org/sci-pubs/amnews/pick_01/hlsc0625.htm
--
PPS World Support Group: http://ppsr.com/ppsworld.html
PPSR - Post Polio Syndrome Resources: http://ppsr.com
Carl Cortez - PPSR Site Owner/Administrator
-----
Subject: Re: Famous People who had Polio
From: JKH <[email protected]>
The "Famous People Who Had Polio" List is here:
http://www.geocities.com/arojann.geo/poliopeople.html
And, you can use it anyway you want in a newsletter or whatever. I
just put it together on my webpage so it would be available to all, and
so it can be updated as needed.
Jann in Baltimore
-----
Subject: Collective Ability
From: "Marguerite McElroy" <[email protected]>
I've just put together a personal experience site which MAY be of
interest.
My PolioUK entry reads:
"http://www.collectiveability.co.uk This site covers my personal
experience (polio in 1950), together with my husband's scientific
checking out, of ways of successfully handling problems related to
late effects of polio, especially swollen, blue feet(oedema, edema),foot
ulcers and chronic fatigue coupled with depression. In fact - I was a
mess! I'm delighted to be out of it and back into the swing of things
again!"
I have had several people who've had polio say they've found it
helpful, so I've set myself a Sunday afternoon aside to publicise it a
bit, and in the process have found loads of things that are of help to
me!
With best wishes
Marguerite McElroy
[email protected]
-----
Subject: [PPM] Energy Conservation Tips
From: "Grace R. Young" <[email protected]>
For info on energy conservation click here for Grace Young's web site
http://www.geocities.com/graceryoung/
-----
Subject: Re: [PPM] breathing
From: Scout <[email protected]>
> I would like to know the difference of c-pap & bi-pap please.
Hi Sharon.. take a look at
http://www.post-polio.org/ivun/ivun1.html#fiala
"Ventilators and Bi-Level Pressure Devices" by Alan Fiala, PhD,
Falls
Church, Virginia
and
Which Ventilator to Use? Dr. E.A. Oppenheimer
http://www.post-polio.org/ivun/ivun1.html#which
......Cleo [email protected]
-----
Subject: Article in "Accent in Living"
From: Becky White <[email protected]>
Subject: Article in "Accent in Living"
Did anyone read the great article in the quarterly magazine, Accent
in Living" the Spring 2000 issue called, "Steps to Relief of Post
Polio Syndrome" by Peter C. Vincent?
Great Article :) (now at http://www.skally.net/ppsc/steps.html)
Take care,
Becky
[email protected]
Hold Fast to Your Dreams...
-----
Subject: [PPM] on DaWeb
From: Scout <[email protected]>
"Shared peer advice from polio survivors and ventilator users"
http://www.post-polio.org/whatwks.html
To Reap the Rewards of Post-Polio Exercise at:
http://www.ncpad.org/whtpprs/postpolioex.htm
Polio Myths and Half-Truths by Julie Silver, MD
http://www.post-polio.org/ipn/pnn18-2.html#myth
Post-Polio Syndrome-a Disease of the 21st Century by Julie K. Silver,
M.D. Reprinted with the gracious permission of Julie K. Silver, M.D.,
June 2000
http://www.skally.net/ppsc/silver3.html
Specific Energy Conservation & Joint Protection Ideas & Tips
http://www.skally.net/ppsc/ec-jc.html
Tony Rodriguez, Dr. Anne Gawne
Managing Your
Medications
http://www.skally.net/ppsc/meds2.html
With Judy Shigemitsu, Pharm.D.
Sleep Disorders of
PPS
http://www.skally.net/ppsc/sleep.html
Frisca Yan-Go, M.D.
WARM WATER POOL EXERCISE http://www.skally.net/ppsc/aqua.html
Compiled by Mary Clarke Atwood
Editorial assistance by V. Duboucheron
Questions, Answers & Tips about PPS
http://www.skally.net/ppsc/ask.html
with Dr. Jacquelin Perry
Control Your Destiny,
II
http://www.skally.net/ppsc/dest.html
with Dr. Jacquelin Perry
How to Prevent Further Disability In Polio Survivors
http://www.skally.net/ppsc/silver2.html
by Dr. Julie Silver
Use of Medication in People with Post-Polio Syndrome
http://www.skally.net/ppsc/meds.html
by: Susan Perlman, M.D.
Conserve to Preserve PPS
Muscles
http://www.skally.net/ppsc/cons.html
by Mary Clarke Atwood
Coping with Fatigue of Post-Polio Syndrome
http://www.skally.net/ppsc/ftg.html
with Susan Perlman, M.D.
What Helps Post-Polio Patients Feel Better?
http://www.skally.net/ppsc/f-g.html
with Stanley K. Yarnell, M.D.
...Cleo
-----
Subject: PBS website: Story of Polio in America
Date: Fri, 18 Sep 1998 12:49:12 -0400
From: J Flenner <[email protected]>
A PARALYZING FEAR: THE STORY OF POLIO IN AMERICA
Learn more about polio, its history, and its impact on American
society with this site that features a historical timeline of the
development of polio vaccines, a video clip from the PBS television
program, and more.
http://www.pbs.org/storyofpolio/
-----
"Managing Post-Polio, A Guide to Living Well with Post-Polio
Syndrome," is edited by Lauro S. Halstead, MD, internationally renowned
post-polio expert and a physician with PPS. The book is an easy-to-read
layman-oriented guide and provides polio survivors, family members,
support group members, and health care professionals with another tool
to assist individuals with post-polio syndrome to live healthier,
fuller lives.
http://www.zynet.co.uk/ott/polio/lincolnshire/library/booklist/managing.html
from: [email protected]
-----
The article entitled POST POLIO SYNDROME by Lauro Halstead, MD
published in Scientific American is available online in the
Lincolnshire Post-Polio Library. Follow:
http://www.ott.zynet.co.uk/polio/lincolnshire/library/halstead/sciampps.html
-----
POLIO PALS PLACE has a new address:
http://www.polkcity.net/polio/index.html
You can always get there via Polk City Net's main page at:
http://www.polkcity.net/
Polio Pals Place is sponsored by Polio Survivor's Research Center,
operated by Jon Schoen.
Polio Survivors Research Center tracks polio vaccines, their effects
and misuse. It is supported by Polk City Net, so donations don't
need to be solicited from PPS victims.
Jon
http://www.polkcity.net/
[email protected]
-----
Nancie has put together a comprehensive set of links at:
http://www.angelfire.com/ia/treevines/polio.html
-----
Grandma & Papa's Place has a number of Post Polio links.
http://www.brightok.net/~ironsides/
-----
Another well done site is the Quick Start Guide to Post Polio
created by Philip Childress at: http://www.plee.com/pps/
-----
Visit the Chava Willig Levy Corner: "My corner includes
several of
my previously published articles, some of which relate to
disability."
GREAT NEWS!
The Chava Willig Levy Corner has moved to its own home:
http://www.chavawilliglevy.com
Excitedly yours, Chava
-----
OK here's the deal. Visit Eric and Cate at Kelowna Days for an
eclectic combination of stories, news, views, polio information and
commentary, common sense and uncommon silliness.
Happy clicking: http://rlis.com/kelownadays/
-----
Tom McKeever's Spacecon - BraveHeart BBS and free ISP site is now
at:
http://spacecon.org
with it's PPS-centric mirror at http://postpolio.org
-----
Bob Mauro has added a number of new articles, short stories and
poems to the pages at:
http://hometown.aol.com/bobezwriter
-----
Tim Zingale has updated his web page with articles he wrote for his
Iowa polio support group.
http://www.dodgenet.com/~tzingale/otherinterests.html
-----
David Brock has set up a web page and placed pictures of people
from the group. If you would like to submit your picture please email
him and attach your scanned picture in either .gif or .jpg format. Go
see POLIO SURVIVORS FRIENDS at:
http://www.geocities.com/hotsprings/3012/
-----
Richard Martinek has set up the Post Polio Information Page at:
http://websites.aero.net/polioinfo
Fecha de última revisión: 1-1-2004