NOTE: This message was originally in conference "INTERNET - E-MAIL AREA"
and was copied here by Tom Mckeever.
From: "Bob Mauro, PPS List Moderator"
To: Multiple recipients of list POLIO
Date: Wed, 19 Jul 1995 08:30:21 -0400
Subject: PPS LIST FAQs -- A MINI-MANUAL
POST POLIO SYNDROME LIST
(Polio@sjuvm.stjohns.edu)
FREQUENTLY ASKED QUESTIONS
Compiled by Bob Mauro, PPS List Moderator
rmauro@delphi.com
Please note that none of the material in this
post should be seen as or used as medical
advise. Only a doctor can give such advice.
The following is only to be used to help you
learn more about Post Polio Syndrome, and
where to get help if you need it.
First, before we get to the most Frequently Asked Questions about
Post Polio Syndrome and our list, let me let you read the following
article about post polio and Internet:
POST POLIO SYNDROME SUPPORT ON THE INTERNET
By Robert Mauro
rmauro@delphi.com
During the first half of the Twentieth Century, Polio was a
disease as dreaded as AIDS is today. Each years millions of
mothers in hundreds of cities all over the United States and
throughout the world, dreaded summers and public swimming pools,
which were when and where Polio was thought to be spread. Every
headache, every fever was feared. No one was immune to Polio. The
rich were just as susceptible as the poor. In 1921 even Franklin
Delano Roosevelt was stricken by Polio. In his time, FDR started
the March of Dimes and Warm Springs to combat the after affects of
Polio. Today Warm Springs is gearing up once again to help those
now living with Post Polio Syndrome. Even the Information
Superhighway is helping to help those of us who still have Polio
to contend with.
Unlike those with AIDS, many of us who were infected with the
Polio virus thirty or forty years ago have survived.
Rehabilitation initially helped many of us who were paralyzed leave
our iron lungs and our wheelchairs and our braces. Hundreds of
thousands of us who had Polio, eventually regained the use of arms
and legs and breathing muscles. We Polio survivors went to school,
college, got jobs, married and had children. We started careers.
Then something began to happen to us. It had been happening all
through the history of Polio. Even as far back as the days of the
Pyramids. But this strange set phenomena, these strange after
affects of Polio, only began to be recognized in the late 1970's.
Polio survivors began to experience new symptoms: weakness,
shortness of breath, pain, and depression.
Many of us with Polio went from doctor to doctor, trying to
get a diagnoses. Why were we always tired? Why did our arms and
legs ache? Why were we getting winded so easily? Some doctors
attributed all these new symptoms to college or job stress. It was
"all in our heads." But we Polio survivors were not convinced.
There was something real happening to us, something slow and
insidious. Eventually we discovered what it was. Post Polio
Syndrome. Nerve cells were dying faster than normal. Overuse was
killing them. In the past, Polio doctors thought exercise was good
rehabilitation practice for Polio survivors. Today they are saying
not to exercise, not to over tax our bodies.
All over the country during the 1980's, Polio Support Groups
were being set up, some sponsored by Easter Seals. And finally
Internet came to the rescue. Thanks to Dr. Robert Zenhausern of
St. Johns University in New York City, I was able to start my Post
Polio Syndrome Internet List. That was in September of 1994,
forty-three years after I was diagnosed with Polio on my fifth
birthday, which was less than four years before the Salk Vaccine.
Today on my Polio list we have hundreds of subscribers from
over twelve countries subscribed. These countries include
Australia, Israel, Iceland, Taiwan, and even Thailand. Together
we get and share information on Post Polio Syndrome. Drug
therapies, new symptoms, ventilator use, and most important, a
support network of friends who care about each other are there at
your fingertips. All you need are a computer, a modem, and
Internet access.
Anyone can join my Polio Internet List for free by simply
sending the message SUB POLIO YOUR NAME to
Listserv@sjuvm.stjohns.edu. If you are a Polio survivor like
myself, you will find the international support you need and the
friendship you'll love. You'll even find Dr. Bruno and Dr. Lauro
S. Halstead, probably the best two Polio doctors in the United
States, if not the world. Join us.
One of our many Post Polio Syndrome list subscribers is Tom
Dempsey. Tom has created a Polio Page on the World Wide Web. On
it you can read articles about Polio and get all the latest facts
on new treatments. To read the WWW Polio Page, just log on to:
http://www.eskimo.com/~dempt/polio.htmL
In 1994, according to the World Health Organization, there
were 6200 recorded cases of new Polio. Today the WHO is trying to
wipe out Polio by the year 2000. If they are successful with their
vaccination program, the Polio virus will finally become extinct.
Vanish from the planet. It will no longer paralyze children and
adults. But there will still be hundreds of thousands of Polio
survivors like myself living on into the Twenty First Century.
Internet will be there to help all of us living with Post Polio
Syndrome. And we will have all the information we need to be able
to live the healthiest and the best lives we can.
Now for some FAQ's:
Q. What are the symptoms of Post Polio Syndrome (PPS)?
A. Here they are:
1. Headaches, especially upon waking in the morning.
2. You wake up at night feeling as if you need air, and
might start leaving the windows open.
3. You feel shaky, anxious, depressed, and psychiatrists or
GPs just say you are worrying too much or are under
stress. Be careful of anti-depressants! These can in
some individuals with respiratory insufficiency have very
bad affects on those persons suffering from PPS!
4. Extreme fatigue, especially mid-day.
5. You wake up tired.
6. You find you need more rest during the day.
7. Your heart races after minor exertion, and more than it
used to.
8. You have trouble concentrating.
9. Pain and weakening in the same muscles that were
initially affected by polio.
10. In extreme cases, bluish tint under fingernails, bluish
tint to lips -- all from poor oxygenation.
We have found that these symptoms can appear in some and not
in others. Most symptoms of PPS usually appear 15 to 40+ years
after the initial onset of childhood polio. Overuse of muscles,
exercise, A-type personalities can all exacerbate and accelerate
the symptoms of PPS.
The key is to get a good pulmonary evaluation if breathing
problems are suspected, especially if initially person was in an
iron lung and was weaned off it years ago. Get a blood-gas test!
Also, DO NOT TRUST A GP! Get a good post polio syndrome doctor.
Call a local Independent Living Center to locate a local Post Polio
Support group. That group can probably give you the name of a good
PPS doctor in your area. (See the directory listed below.)
Q. What should I do if I have PPS?
A. Conserve your energy. Rest, do not exercise or overuse
affected or initial affected muscles. Use braces or
special shoes for support. Use a manual wheelchair,
electric scooter, or motorized wheelchair to conserve
your strength. Also, see a doctor who specializes in
treating people with PPS. You can find such a doctor in
the following directory: "Post-Polio Directory,"
published at the beginning of each year. Cost $4.00 for
Polio Survivors, $8.00 for others. Order:
International Polio Network (G.I.N.I.)
5100 Oakland Ave # 206
St Louis MO 63110
(314) 534-0475
Fax (314) 534-5070
Q. What is the PPS list (Polio@sjuvm.stjohns.edu) all about?
A. If you're a computer user and have on-line access to
Internet, you might want to join Robert Mauro's new free
on-line Internet list for persons who have Polio or who
live with or work with persons with Polio. It's free!
(Although we don't charge anything, some CISs like
CompuServe charge a small surcharge to receive Internet
mail. So check with your sysop or Customer Support.)
Here's what we'll be talking about and how to subscribe to our
on-line Polio List:
1. We can discuss what Polio is.
2. We can talk about how Polio has effected us.
3. We can share ideas about how our doctors are treating our
symptoms.
4. We can talk about new therapies, new drugs and their side
effects -- and their effectiveness, or lack thereof, in
treating the symptoms of Polio and Post Polio Syndrome.
5. You can list your local Post Polio Support Group here and
even upload the highlights of the minutes of your last
Post Polio Support Group meeting if you feel those
highlights can help others learn more about Polio and
Post Polio Syndrome and ways to live with them.
6. We can also share reviews on books about Polio and Post
Polio Syndrome.
7. Finally, we can get to know each other and help each
other with our mutual friendship and support.
As for what topics are appropriate to discuss on this list? All
of the above! And anything that relates to PPS, from anxiety to
sex! Try to avoid technical language, conference announcements,
quotes from other lists unless appropriate and short and
discussions that do not relate to Polio. Please, do not post
commercials. Many people on this list may have differing opinions
from your own. That is ok. Try to be helpful with your comments.
AND... PLEASE DO NOT RE-POST LONG SECTIONS OF PREVIOUS POSTS YOU
WISH TO RESPOND TO!! This gets very annoying and takes up
expensive time and space!
To join our on-line Polio List, send e-mail to:
listserv@sjuvm.stjohns.edu
Send the message to:
sub Polio yourfirstname lastname
Q. Who is Bob Mauro, PPS List Moderator?
A. Bob Mauro was born in New York City on 9/25/46. In 1973,
he moved out to Long Island. He contracted Polio at age
5 in 1951. He uses a respirator and an electric
wheelchair. He does all his computing lying down, not
being able to sit at a desk for long periods of time as
a result of 3 spinal fusions in 1960-61.
Bob received my B.A. (in Sociology) in 1976 from Hofstra
University on Long Island. That year he made his first
professional sale as a writer. Since then he has had
four books published.
Bob's books are:
FINDING LOVE AND INTIMACY <---<< (for disabled and non-disabled)
HOW TO LIVE LONGER WITH A DISABILITY
TWO CHARACTER PLAYS FOR STUDENT ACTORS
ON STAGE! SHORT PLAYS FOR ACTING STUDENTS
Bob edits and publishes PeopleNet, his international
personals/networking newsletter by and for disabled
singles. He's been doing that since August of 1987, and
so far he's had some marriages as a result of couples
meeting each other via PeopleNet.
For ordering info on Bob Mauro's books and newsletter, send e-mail
to rmauro@delphi.com
From America Online information service PPS Bulletin Board
PPS QUESTIONS AND ANSWERS, MARCH, 1995
by Drs Richard Bruno and Nancy Frick
These general answers and our on-line discussion on 3/7/95 represent what is
written in the medical literature on PPS, our newest research and how we
treat patients at the Kessler Post-Polio Service. They are NOT intended as
therapeutic recommendations for you personally nor as a substitute for your
being evaluated by your own personal doctor and a doctor who knows about PPS.
Every polio survivor (PS) is different and prescribed treatments must take
those differences into account.
Post-Polio Sequelae (PPS) is a diagnosis of exclusion, meaning a physician
must evaluate you and determine that no other condition is causing your
symptoms. You may have PPS alone, PPS and another problem or a condition not
related to polio at all. There are no medical tests that can prove you have
PPS.
Read these answers, read the journal articles listed with each, and
understand them fully. Take them to your doctor or therapist and ask them to
read and understand them fully. Do not apply therapeutic techniques described
here (especially exercise) on your own.
We very much hope these answers serve an educational purpose and that you
integrate them with your own experience, personal wisdom and doctors'
recommendations so that you can thrive, not just survive, with PPS!
Best wishes, Drs. Richard Bruno and Nancy Frick
ABOUT PPS PREVENTION & PROGRESSION
There are no long-term studies of whether PS who have no symptoms will
develop PPS. Every time a study of PS is done, the percentage with new
problems increases. The percentage was 22.4% in the first Mayo clinic study
in 1982 and increased to 78% in a British polio hospital follow-up in 1987.
At the NY Academy of Sciences Symposium on PPS April, 1994, the Mayo group
and others thought that more than 90% of PS would develop some problems
related to their polio.
Every PS is different. But, the rules that apply to every mortal apply to PS.
Anyone who has too few overworked, damaged nerves compensating for muscle
weakness for over 40 years is bound to have some problems. And, when you add
PS super Type A lifestyles and the fact the they work more hours of overtime
than non-disabled people, something's got to give.
But, the good news it that the study cited below and our new follow-up study
of all the patients we have treated show that if you listen to your body and
stop doing the things that cause weakness, fatigue and pain, PPS often
plateau and can even decrease (see below: Exercise & Activity). One example:
18 months after their evaluation with us, PS who completed therapy reported
22% LESS fatigue; however, PS who refused treatment or dropped out of therapy
early had 21% MORE fatigue at 18 months.
******************************
Peach PE, Olejnik S Effect of treatment and non-compliance on Post-Polio
Sequelae. ORTHOPEDICS, 1991, 14(11): 1199.
ABOUT EXERCISE & ACTIVITY
--- WILDMAIL!/WC v4.12
1:374/22.0)
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* Origin: SPACECON Med/Disab. BBS - Home of ye POST_POLIO ECHO.
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