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Tom Dempsey's Polio and Post-Polio Information Packet

Tom Dempsey's Polio Survivors' Page, the first Post-Polio site to appear on the WWW back in March 1993, was withdrawn from service some years ago.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

Catalogue Entry Index

Select title in catalogue entry index to display summary details of article, select title in summary to display full text of article

[ Other Post-Polio Libraries]

Title: An Approach To The Patient With Suspected Post Polio Syndrome
Lincolnshire Post-Polio Library Copy
[ Full Text Here ] 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.

[ Index ]

Title: Preventing Complications In Polio Survivors Undergoing Surgery
Lincolnshire Post-Polio Library Copy
[ Full Text Here ] 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

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Title: Post Polio Sequelae True Answers for Friends and Family
Lincolnshire Post-Polio Library Copy
[ Full Text Here ] 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.

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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?

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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)

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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.

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Title: Bouncing Back Without Guilt
Lincolnshire Post-Polio Library Copy
[ Full Text Here ] 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.

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Title: Recognizing Typical Coping Styles Of Polio Survivors Can Improve Re-Rehabilitation
Lincolnshire Post-Polio Library Copy
[ Full Text Here ] 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.

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Title: A Guide For Post-Polios
Do's And Don'ts
General Therapies And Things To Avoid

Lincolnshire Post-Polio Library Copy
[ Full Text Here ] 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.

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Title: Polio Feet - There's a reason you have cold feet - but you can keep warm and stay cool
Lincolnshire Post-Polio Library Copy
[ Full Text Here ] 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.

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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.

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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.

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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.

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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).

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Title: Exercise - What Is Right For You
Lincolnshire Post-Polio Library Copy
[ Full Text Here ] 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?

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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.

[ Index ]

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.

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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).

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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.

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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.

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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.

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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.

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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.

[ Index ]

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.

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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."

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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.

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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.

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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).

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NOTES

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 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 from other Internet WWW sites are welcome and encouraged. We only ask that you let us know so that we can in future notify you of critical changes. Reproduction and redistribution of any articles via any media, with the exception of the 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.
Last modification: 1st February 2010.
Last information content change: 28th April 2005.

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