Tom Dempsey's Polio Survivors' Page, the first Post-Polio site to
appear on the WWW back in March 1993, was withdrawn from service some years
ago. We have produced the following catalogue of articles referenced
Tom Dempsey's Polio and Post-Polio Information Packet originally available
at that site. Fortunately, the Lincolnshire Post-Polio Library also
has some of those articles and the catalogue entry will be for the 'Lincolnshire
copy'.
IMPORTANT NOTES FOR FIRST-TIME READERS
Select title in catalogue entry index to display summary details of article,
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- Title: An
Approach To The Patient With Suspected Post Polio Syndrome
Lincolnshire Post-Polio Library Copy
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Author(s):
Originally written by Dr. Warren Anderson and the Medical Advisory Board of
the Post Polio Program Easter Seal Society of Oregon
MEDICAL ADVISORY BOARD of the POLIO OUTREACH ADVISORY COUNCIL
A Working Advisory Council to the Easter Seal Society of Washington
Joshua Benditt, MD, Pulmonologist; Bill Kelly, Physical Therapist; Evan Cantini,
MD, Physiatrist; Dennis Lang, RN, MPH, Polio Survivor; Dianna Chamblin, MD,
Physiatrist; Lawrence R. Robinson, MD, Physiatrist; Margarette Forgette, MD,
Physiatrist; and Mark Sumi, MD, Neurologist.
Abstract/Extract: Polio survivors are at risk for the occurrence
of certain physiologic changes in the nervous system which result in a characteristic
set of symptoms now known as Post Polio Syndrome. In addition to these unexpected
physiological changes there are anticipated complications such as arthritis,
scoliosis, and entrapment syndromes that frequently accompany paralytic conditions.
These anticipated complications are not the problems that distinguish PPS
from other diseases of the nervous system. Post Polio Syndrome (PPS) is a
major chronic illness and one which poses unique problems to its survivors
and their physicians.
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- Title: Preventing
Complications In Polio Survivors Undergoing Surgery
Lincolnshire Post-Polio Library Copy
- Author(s): Richard L. Bruno,
Ph.D.
Original Publication: PPS Monograph Series. Volume 6(2).
Hackensack:Harvest Press,1996.
Abstract/Extract: Unfortunately, only a handful of specialists
treat Post-Polio Sequelae (PPS) - the unexpected and often disabling fatigue,
muscle weakness, joint pain, cold intolerance, and swallowing, sleep and breathing
problems - occurring in America's 1.63 million polio survivors 40 years after
their acute polio. However, all medical professionals need to be familiar
with the neurological damage done by the original poliovirus infection that
today causes unnecessary discomfort, excessive physical pain and occasionally
serious complications after surgery. This is a brief overview to inform patients
and professionals about the cause and prevention of complications in polio
survivors undergoing surgery.
Includes: POLIO SURVIVORS' PRE-OP
CHECKLIST
- Title: Post
Polio Sequelae True Answers for Friends and Family
Lincolnshire Post-Polio Library Copy
- Also reproduced in Issue
No.1 - September 1996 of LINK-PIN.
Abstract/Extract:
What is Polio?
'Polio' (or poliomyelitis, infantile paralysis) is a disease caused by three
viruses that enter the mouth, grow in the intestines and pass along the nerves
into the brain and then the spinal cord. There are 1.63 million American polio
survivors.
- Title: A
Pound of Prevention is Worth a Ton of Therapy
- Author(s):
Richard L. Bruno, Ph.D.
Abstract/Extract: There has never been a longitudinal study
that looks at the emergence of post-polio sequelae (PPS) in polio survivors
who have no symptoms.
However, each time someone surveys polio survivors, the percentage of individuals
reporting PPS goes up. When Mary Codd did the first population-based study
at the Mayo Clinic in 1983, she found that 22.4% of paralytic polio survivors
had PPS. The 1987 National Health Interview Survey estimated that of America's
1.63 million polio survivors, 66% who had paralytic polio and 24% who had
non-paralytic polio had PPS. In England, where they don't even believe in
PPS, 78% of the 1940's-era graduates of one polio hospital are reporting "new
symptoms." Something must be going on that causes more and more polio survivors
to report PPS as the years go by. But what?
- Title: Getting
Social Security Benefits (USA)
- Author(s):
Nebraska Polio Survivors Association
Original Publication: POGOS New Mexico Easter Seal Society
Newsletter
Abstract/Extract: If you have worked 20 out of the past 40
quarters and have contributed to the Social Security fund during that time,
you may be eligible for the Social Security disability program. Apply at any
Social Security office as soon as you become disabled. Ask SSA for their pamphlet
called "Disability." (05-10029)
- Title: Social
Security Evaluation Manual for Post-Polio (USA)
- Author(s):
SSA
Abstract/Extract: This transmittal discusses the late effects
of anterior poliomyelitis (polio) which may occur many years after the acute
illness. It introduces guides concerning the documentation and evaluation
of the new functional problems being experienced by some polio survivors.
These new functional limitations are causing increased impairment for some
individuals in the performance of usual daily activities including work activities.
- Title: Bouncing
Back Without Guilt
Lincolnshire Post-Polio Library Copy
- Also reproduced in Issue
No.2 - November 1996 of LINK-PIN
Author(s): Wendy Clyne PsyD.
Abstract/Extract: Today, I'm going to be talking about some
of the factors that may hinder you from becoming your own medical advocate.
Some factors may be related to your experience of having polio, or to anyone
attempting to cope with medical problems, such as chronic pain, fatigue, weakness,
loss of function.
- Title: Recognizing
Typical Coping Styles Of Polio Survivors Can Improve Re-Rehabilitation
Lincolnshire Post-Polio Library Copy
- Author(s):
Frederick M. Maynard, MD and Sunny Roller, MA
Original Publication: Am. J. Phys. Med. Rehabil. Vol. 70,
No. 2, April 1991
Abstract/Extract: During the past ten years many polio survivors
in the U.S. have actively been seeking professional help for a wide range
of new physical problems, commonly referred to as the late effects of polio.
Often these persons require re-rehabilitation in order to continue their accustomed
social roles. In our experience at the Post-Polio Program of the University
of Michigan Medical Center, we have come to recognize among polio survivors
three distinct patterns of emotional reaction to the need for re-rehabilitation.
These patterns appear to result from characteristic styles of living with
a chronic disability. We propose a model for categorizing polio survivors
that is based on our observations. Although it is limited by overgeneralization,
we have found that polio survivors themselves have verbally validated our
proposed categories at many post-polio conferences. A 1963 study of children
with polio and their families also describes early coping behaviors that are
compatible with our model.
- Title: A
Guide For Post-Polios
Do's And Don'ts
General Therapies And Things To Avoid
Lincolnshire Post-Polio Library Copy
- Author(s):
Compiled by the Post Polio League.
Abstract/Extract: What follows is a general, practical guide
for post-polios to use, and summarizes the current thinking about post-polio.
It will be most valuable if it stimulates you to seek further and more specific
information.
- Title: Polio
Feet - There's a reason you have cold feet - but you can keep warm and stay
cool
Lincolnshire Post-Polio Library Copy
- Author(s): Richard Bruno,
Ph.D.
Original Publication: New Mobility, March 1996
Abstract/Extract: The process that cause "Polio Feet" to
turn blue and cold and become difficult to move when it's only cool is the
same process that caused paralysis after the original polio.
- Title: The
Post-Polio Syndrome and Re-Rehabilitation
- Author(s):
Frederick M. Maynard, M.D.
Original Publication: Easter Seal Society of Washington.
Abstract/Extract: During the past five years, a Post-Polio
Research and Training Program has been established at the University of Michigan
Hospital in Ann Arbor, Michigan. A Post-Polio Clinic is held weekly to investigate
causes for new symptoms among polio survivors and to develop re-rehabilitation
programs for them. Using modern rehabilitation methods and techniques, these
polio survivors are able to be helped and can usually be restored to their
customary levels of functioning. Many of them, however, need to return to
or begin using braces, crutches, canes, wheelchairs, and a variety of adaptive
equipment in order to compensate for the newly developed weakness and loss
of functional abilities. Research continues to be done in order to discover
what factors may predispose some polio survivors to progression of their weakness
and development of new disabling medical problems. By sharing some of this
new information with medical professionals and consumers, it is hoped that
rehabilitation outcomes can be improved. The goal of this presentation is
to explain what we have learned about the late effects of polio and how to
manage their disabling effects.
- Title: The
Late Effects of Polio: An Eleven Year Experience Managing Post Polio
- Author(s):
S. K. Yarnell, MD
Original Publication: Vancouver 1992 Conference presentation.
Abstract/Extract: In order to more easily understand the
late effects of polio, it is important to remember the original effects of
the poliomyelitis virus on the body. The portal of entry for the polio virus
was oral and the virus infection in its first stage was in the gut cells lining
the intestines. Many people infected with the virus at this stage thought
that they simply had gastrointestinal flu with the symptoms of diarrhea and
nausea. For a significant percentage of the people infected with the virus,
the disease ended at this point. But for some, the virus continued to multiply
and spilled over into the blood stream, signalling the viraemia stage of the
infection. Symptom then were not unlike a more generalized influenza, with
fever, chills, malaise and achiness. Once again, for a significant percentage
of the originally infected patients, the disease process ended there. However,
in a small percentage of the originally infected patients, the virus was able
to move into the central nervous system to infect the anterior horn cells
(see diagram). Those were the individuals who got "paralytic"polio. The distribution
of weakness or paralysis depended on which anterior horn cells were involved;
spinal anterior horn cells involvement resulted in weakness or paralysis in
the arms, legs, and trunk to one degree or another, while bulbar (brainstem)
anterior horn cell involvement resulted in visual, swallowing, or breathing
difficulties in any combination. The anterior horn cell or motor neuron as
it is also called is the nerve cell which innervates the skeletal muscle fibres.
The motor neuron (anterior horn cell) aand all the muscle fibers that it innervates
is called the motor unit. Remember this definition, as many of the speakers
will make mention of it in discussing the late effects of polio.
- Title: Post-Polio
Symptoms and Effects: A Brief Guide
- Author(s):
Compiled by the Post-Polio League for Information and Outreach
Abstract/Extract: The past few years have seen a great deal
of research devoted to what are generally referred to as "the late effects
of polio." This research continues; its pace accelerated. The symptoms and
examples listed here are known or suspected to be associated with post-polio.
Not every one will apply to any individual. There are many variables, including
your age, degree of disability, and how severe the polio was. These symptoms
are, however, a useful guide and beginning point for assessing one's own life,
seeking appropriate medical treatment, and perhaps making necessary changes
in lifestyle.
- Title: Post-Polio
Fatigue: How It Can Change Your Mind
- Author(s):
Mavis J. Matheson, M.D.
Original Publication: Written February, 1995
Abstract/Extract: One of the most frustrating late effects
of polio for me was the awareness that I could not concentrate and a feeling
that I wasn't thinking clearly anymore. For many of us who have compensated
for our physical limitations through intellectual pursuits this is a terrifying
feeling. Is it not bad enough that our bodies are giving out? Must we undergo
the indignity of losing our minds as well? Studies show that in spite of marked
impairments of attention, polio survivors are within the high normal or superior
range on measures of higher-level cognitive processes and IQ. They also show
that if we allow ourselves to become fatigued we do lose our ability to focus
our attention and to rapidly process complex information (requiring 23 to
67 percent more time to complete tasks requiring sustained attention and vigilance
than did polio survivors with no fatigue or mild fatigue).
- Title: Exercise
- What Is Right For You
Lincolnshire Post-Polio Library Copy
- Also reproduced in Issue
No.3 - January 1997 of LINK-PIN
Author(s): Mavis J. Matheson. MD.
Abstract/Extract: Many people with a history of polio can
improve muscle strength and cardiovascular conditioning with an exercise program.
One of the problems that people with Post-polio Syndrome face is how much
exercise they should be doing. We have all been told to conserve our energy.
We know that too much exercise will further damage already weak muscles. We
also know that if a muscle is not exercised it will lose strength. So what
should we be doing?
- Title: L-Carnitine
and Post-Polio Syndrome
- Author(s):
Mavis J. Matheson, M.D.
Original Publication: September 1994
Abstract/Extract: L-Carnitine - from "meat" (Latin: carnis)
has been known for a long time. It is found mainly in the meat and liver of
sheep, lambs, rabbits, in milk and in yeast. L-Carnitine is a prescription
drug in Europe and is marketed in health food stores in the United States.
It is available in health food stores in combination with aminoacids in Canada.
- Title: Changing
Your Life By Conserving Energy
- Author(s):
Mavis J. Matheson, M.D.
Original Publication: Revised May 1995
Abstract/Extract: Polio survivors need to learn to conserve
energy if they are to control their symptoms of pain, weakness, and fatigue.
It takes effort and a change in attitude to learn to use energy conservation
to our greatest advantage. Using our energy well can allow us to do more and
do it better. This article suggests four principles of energy conservation
and three techniques for making the necessary changes in our lives. Many of
us don't have the strength and energy that we used to have so it's time we
started taking better care of ourselves.
- Title: Total
Joint Replacement in Post-Polio
- Author(s):
Marny Eulberg, M.D.
Original Publication: Educational meeting, September, 1992,
Mercy Medical Center. Colorado Post-Polio Connections.
Abstract/Extract: My qualifications are that first I am a
physician, a family practice physician not an orthopedic surgeon, so I'll
give you the generalities of the surgery not the nitty-gritty of how many
parts there are or where the screws go. Secondly I am a polio survivor and
had a total joint replacement done in March of this year (1992).
- Title: Anesthesia:
Considerations for Polio Survivors
- Author(s):
Geoffrey T. Spencer, OBE, MB, BS, FFARCS, Consultent, Department of Anaesthetics,
Lane Fox Respiratory Unit, St. Thomas' Hospital, London, England
Original Publication: Polio Network News, Fall 1991, Vol.
7, No. 4
Abstract/Extract: Dr. Spencer, we have received several requests
for information concerning "the danger of administering certain anaesthetics
to polio survivors." Please clarify the issues.
"The problem is not straightforward, but our experience is described in "Perioperative
care in restrictive respiratory disease", J.A. Patrick, M. Meyer-Witting,
F. Reynolds and G.T. Spencer, "Anaesthesia, 1990, Volume 45, pages 390-395.
The article suggests that with suitable modification to take account of the
disability, general anesthesia is no more dangerous for people who had polio
than it is for anybody else, and our views are summarized in the conclusions."
For the American perspective read Thom
Bloomquist's response.
- Title: Polio
in Perspective for 1995
- Author(s):
Dr. Jacquelin Perry (reported by Mary Clarke Atwood; posted by Tom Walter)
Original Publication: March 1995 Newsletter of the (Downey,
CA) Rancho Los Amigos Post-Polio Support Group
Abstract/Extract: Jacquelin Perry, M.D., Chief of Pathokinesiology
and Polio Services at Rancho Los Amigos Medical Center was the featured speaker
at the Rancho Los Amigos Post-Polio Support Group meeting in Downey, CA on
December 10, 1994.
During the beginning portion of this lecture, Dr. Perry reviewed some basic
medical questions regarding post-polio syndrome, such as: who gets PPS; what
causes it; how is it diagnosed. She went on to explain muscle weakness in
more detail before discussing lifestyle modification, tips for saving your
shoulders, and exercise guidelines. She concluded by telling us what we can
do, along with some cautions.
- Title: Post
Polio Research Update -- December 10, 1995
- Author(s):
Dr. Jacquelin Perry (reported by Mary Clarke Atwood)
Original Publication: Los Amigos Post-Polio Support Group
meeting in Downey, California on December 10, 1995.
Abstract/Extract: In her annual talk to this support group,
Dr. Perry gave an overview of some current research approaches to managing
Post-Polio Syndrome (PPS) including reports of studies on nerve axon overuse,
medications used for treating PPS fatigue and pain and myoneural junction
overuse. She cautioned people to look at the volume of data, not just the
numbers, when looking at results of studies.
- Title: The
Late Effects of Polio: From Taming a Mysterious Syndrome to Managing the Ravages
of Time
- Author(s):
Frederick Maynard, M.D.
Original Publication: Conference on Aging with a Disability
Abstract/Extract: Good morning. It is a real pleasure to
be here today and see so many old friends, even a patient from Michigan. I
am really thrilled to be here in Southern California and participate in this
Conference on Aging with a Disability. I have been communicating with Dr.
Campbell for a couple of years now, sharing some of our different work, and
becoming aware of this study's goals. I am delighted to hear the results and
learn what has been found by comparing two major kinds of disability groups.
I have also been involved with conferences on spinal cord injury and aging.
There was a large one last spring in Denver. It is striking to note the number
of similarities between the health issues faced by aging people with any type
of long-standing disability from a motor impairment; i.e., quadriplegia, paraplegia,
polio with paraplegia or arm weakness, stroke, and hemiplegias. As people
live many years with these conditions, a number of similar new problems often
develop.
- Title: Acute
Anterior Poliomyelitis, Some Observations
- Author(s):
Edward Snapp, R.P.T.
Abstract/Extract: My opinion concerning polio, the disease
process and its aftermath of paralysis, pain, weakness, incoordination, deformity,
and fatigue is a result of my experiences. I have had the opportunity to work
with thousands of patients with polio during the epidemics in the late 1940's
and 1950's. I followed many of these people through years of rehabilitative
efforts. In recent years, I have again come in contact with a number of these
patients and have observed the development of this latent complex of symptoms
and disabilities called post polio syndrome.
- Title: Therapeutic
Electrical Stimulation (TES)
- Author(s):
Ruth Wyler
Abstract/Extract: Therapeutic electrical stimulation (TES)
is an old technique with a new application: treatment of muscles weakened
by the Post-Polio Syndrome. To inform its readers, the newsletter staff sent
its rolling reporter to learn about this technique and to interview some of
the people who are using it.
- Title: Polio
... More Than Once
- Author(s):
Amy F. Brown
Original Publication: Read from Marti Whiting's nursing book
- Brown, Amy F., Medical and Surgical Nursing II, W.B. Saunders Company
1959.
Abstract/Extract: "Incidence: Some authorities state
that as high as 80 per cent of the population in this country has had poliomyelitis
at some time, which was not recognized and which left no residual paralysis.
......It is thought that probably one case in about a hundred cases becomes
paralyzed."
- Title: Chronic
Illness Bibliography
- Abstract/Extract: Few things in life
can be as potentially devastating as chronic illness. It affects not only
the patient, but his/her friends, family, associates and most of all, the
care partner. There are, however, many ways to learn to cope with and, in
some cases, even triumph over chronic illness. These ideas and techniques
deal with both the physical and the emotional sides of chronic illness and
can benefit the sufferer as well as those who support and love him or her.
The following list of books will guide you through some of these programs,
ideas, and strategies for effectively dealing with chronic illness.
- Title: Grading
For Manual Muscle Testing
- Author(s):
Attributed to Dr. Jacquelin Perry.
Abstract/Extract: This testing is usually done by a trained
physical therapist, physical medicine or rehab specialist and is somewhat
subjective -- dependent on the tester and their strength.
- Title: Medications
- Author(s):
Ruth Wyler-Plaut (on a talk by Dr. Lauro Halstead)
Original Publication: Greater Boston Post-Polio Association
newsletter, TRIUMPH (portions of an article)
Abstract/Extract: At the April 30, 1995, New Jersey Polio
Network Conference, Dr. Lauro Halstead......described four drugs and four
modalities that have been under study for the treatment of symptoms of the
post-polio syndrome (PPS).
It is the intention of the Lincolnshire Post-Polio Network to make
all the information we collect available regardless of our views as to it's
content. The inclusion of a document in this library should not therefore be
in any way interpreted as an endorsement.
People who had polio and are experiencing new symptoms need to be assessed
by medical professionals who are experienced in Post-Polio to determine what
is wrong and to give correct advice. We can only make these documents available
to you. YOU must then take what you believe to be relevant
to the medical professional you are seeing. We are collecting and collating
everything we can to enable medical professionals to make informed decisions.
Other medical conditions must be looked for first, Post-Polio Syndrome is by
diagnosis of exclusion.
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The Lincolnshire Post-Polio
Network
Registered Charity No. 1064177
An Information Service for Polio Survivors and Medical Professionals
The Lincolnshire Post-Polio Network takes great care in the
transcription of all information that appears at this site. However, we do not
accept liability for any damage resulting directly or otherwise from any errors
introduced in the transcription. Neither do we accept liability for any damage
resulting directly or otherwise from the information available at this site.
The opinions expressed in the documents available at this site are those of
the individual authors and do not necessarily constitute endorsement or approval
by the Lincolnshire Post-Polio Network.
© Copyright The Lincolnshire Post-Polio Network 1998 -
2010.
Copyright is retained by The Lincolnshire Post-Polio Network
and/or original author(s). Permission is granted to print copies of individual
articles for personal use provided they are printed in their entirety. Links
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let us know so that we can in future notify you of critical changes. Reproduction
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aforementioned, requires permission from The Lincolnshire Post-Polio Network
and where applicable, the original author(s).
Document preparation: Chris Salter, Original
Think-tank, Cornwall, United Kingdom.
Primary Document Reference: <URL:http://www.ott.zynet.co.uk/polio/lincolnshire/library/eskimo.html>
Secondary Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/library/eskimo.html>
Last modification: 1st February 2010.
Last information content change: 28th April 2005.
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