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Catalogue

For the Polio Survivor, Friends and Family

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

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PPS?

Title: Terminology
[Complete Text]Author(s): Tom Walter
Abstract/Extract: Different clinics, doctors, organizations use terms differently, with different meanings or interchangeably, to describe our PPS. And I don't believe there is any general agreement on their meaning. Here's some samples.

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Title: Post Polio Sequelae True Answers for Friends and Family
[ 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: Post-Polio Syndrome
[ Full Text Here ] Author(s): Lauro S. Halstead, MD
Original Publication: Scientific American April 1998 Vol 278 Number 4:36-41
Abstract/Extract: Decades after recovering much of their muscular strength, survivors of paralytic polio are reporting unexpected fatigue, pain and weakness. The cause appears to be degeneration of motor neurons. In the first half of the 20th century, the scourge of paralytic poliomyelitis seemed unstoppable. A major polio epidemic hit the New York area in 1916, and in the following decades the epidemics grew in size and became more deadly. The epidemic of 1952, for instance, affected more than 50,000 Americans and had a mortality rate of about 12 percent. It is difficult to realize today the extent of the fear and panic that gripped the public. Polio haunted everyone: families stayed at home; swimming pools were closed; public events were canceled.
Special Note: Inclusion of artwork on pages 36, 37, 38, and photographs on pages 40 and 41 of Scientific American Journal is pending reprint permission from other copyright owners.

See also POLIO AFTERMATH Scientific American Letters Page August 1998, includes reply from Dr. Halstead.

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Title: Did you have acute poliomyelitis? An Explanation for Polio Survivors about Post Polio Sequelae LEAFLET
[ Full Text Here ] Author(s): J. M. Walker, PhD, PT, C. Grant, BSC(Physio)
Original Publication: Originally written for Post-Polio Support Society NZ (Inc). Revised 1996.
Abstract/Extract: Discusses What is PPS?, How common is PPS?, Who is at risk for PPS?, Recovery from Polio, What causes PPS? and What can be done?.

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Title: Ultimate Burnout: Post-Polio Sequelae Basics
[ Full Text Here ] Author(s): Dr. Richard Louis Bruno
Original Publication: New Mobility, 1996; 7: 50-59
Abstract/Extract: It's 8:00 p.m. and only one light is burning at corporate headquarters. Mr. Gray, MBA, the 55-year-old CEO, is awakened by the phone. He lifts his head from the desk to answer and hears his wife asking when he's coming home. Feeling as if he weighs a ton, his muscles burning, Mr. Gray wheels himself to the car and, with barely enough strength to pull his chair in behind him, drives home. He greets his kids, rolls into the bedroom, and throws himself on the bed. It's the third night this week he has gone to bed without dinner and slept in his clothes.

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Understand yourself

Title: Bouncing Back Without Guilt
[ 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: Early Memories Of Having Polio: Survivors' Memories Versus The Official Myths
[ Full Text Here ] Author(s): Mary T. Westbrook, PhD
Original Publication: Paper presented at the First Australian International Post-Polio Conference, "Living with the Late Affects of Polio",Sydney, November, 1996
Abstract/Extract: This paper discusses the findings of a survey in which polio survivors were asked to write accounts of their early memories of having polio. These recollections will be compared with the views expressed in the two major sources of information about the polio epidemics that occurred earlier this century. These sets of writings, which I will refer to as the "official" views of the polio experience, are firstly, the books and articles written by health practitioners, mainly doctors, physiotherapists and social workers, who treated patients with polio and secondly, the autobiographies and biographies of people who contracted polio. The official accounts will be shown to differ in a number of ways from survivors' memories in that they fail to recognise, ignore or distort aspects of the typical polio experience. In fact, they are what could be designated "official myths" of what it felt like to contract paralytic polio. Finally, I will consider how these myths, or social attitudes, influenced the ways in which survivors have coped with polio and post-polio syndrome.

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Advise yourself

Title: A Guide For Post-Polios
Do's And Don'ts
General Therapies And Things To Avoid
[ 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: PPS Questions and Answers, March, 1995
[ Full Text Here ] Also reproduced in Issue No.4 - March 1997 of LINC-PIN
Author(s): Drs Richard Bruno and Nancy Frick (Compiled by Tom Walter)
Original Publication: From America Online computer information service PPS Bulletin Board
Abstract/Extract: 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.

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Title: Dr. Neil Cashman Answers Polio Quebec Members' Questions
[ Full Text Here ] Also reproduced in Issue No.8 - November 1997 of LINK-PIN.
Author(s): Dr. Neil Cashman
Original Publication: POLIO QUEBEC AGM - September 1997
Abstract/Extract: Have you ever considered what the chiropractor can do to help the pains and the general condition of the spinal cord? - When do you decide to prescribe Mestinon to a patient? - Is general fatigue a criteria for the use of Mestinon, or is it more for weaknesses to legs, arms or for pain? - Has there been any research/invest into alternative medicine techniques either using herbal remedies or other healing techniques (Qi-gong)? - Do you recommend taking extra Calcium or Vitamin E for PPS? - Should a PPS person do conditioning exercises, sub maximal exercises or maximal fatiguing exercises, or all three? - What are your thoughts about CPAP? - Elaborate on the role of free radicals in PPS? - Does the [Canadian] government recognize PPS? Has any progress been made towards getting compensation for PPS? - Given that weight control is a problem when mobility is reduced, what advice would you give given that weight loss is a twofold formula of fewer calories combined with increased physical activity? - Is there anything new to relieve the feeling of coldness due to polio? - Are tendonitis and bursitis a sign of PPS? Are there short-term or long-term remedies? Is exercising recommended to regain strength? - What impact will Mestinon have on the heart? - How old is your youngest post-polio patient?

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Title: A practical approach to the late effects of polio
[ Full Text Here ] Author(s): Charlotte Leboeuf
Original Publication: The Commonwealth Department of Community Services and Health (Australia) 1991/1992. (Republished by the British Polio Fellowship)

Abstract/Extract: The Neurological Resource Centre of South Australia (Inc.) and the Post Polio Support Group of South Australia (Inc.) were given a grant by the Commonwealth Department of Community Services and Health to produce an information book on this subject for members of the Australian health professions. This work resulted in the collection of information which was also suitable for a "consumer" handbook.

It is hoped that this handbook will be of assistance to people who previously had polio and to all those who wish to obtain information on the acute polio infection and how it relates to the late effects of polio.

By reading this booklet, it is hoped that those who previously had polio can understand how to cope with the late effects of polio, whether they already experience symptoms or simply wish to learn about it in order to try to prevent its onset.

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Title: The Hassles Of Living With Post-Polio: Some Survival Strategies
[ Full Text Here ] Author(s): Mary T. Westbrook, PhD
Original Publication: Paper presented at the Polio Consumers Forum, 12th World Congress of the International Federation of Physical Medicine and Rehabilitation, Sydney, March 1995
Abstract/Extract: I don't need to elaborate on the hassles of living with post-polio syndrome to most of this audience. As Lorenzo Milam a polio survivor wrote:

When (polio) first picks us up and throws us down, we think that we can beat it. Learn to walk; do it gracefully, so no one will know what little we have. Become independent: how do they say it? 'I'll be my own man'. They never tell us about Phase Two: when the ageing nerves begin to weaken. What we learned to do so smartly after the fire had passed over us, we watch disappear again. Our victories last for ... thirty years - and then the referee comes up to us, blows the whistle, and tells us that we're out, after all. What we gained, we lose (p. 59).

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Title: Pain Relief - Some tips from the collected wisdom of the Internet Polio Mail List
[ Full Text Here ] Author(s): Assembled by Tom Walter
Abstract/Extract: Assuming the person has been thoroughly checked for any other conditions that could mimic PPS symptoms and be treated -- and that any orthopedic anomalies that could be causing pain have been treated -- here's a partial list of some tips that PPSers have reported seem to work for them, alone or in combination:

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Title: Polio Feet - There's a reason you have cold feet - but you can keep warm and stay cool
[ 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: What you should know about your Medications - A guide for Polio Survivors (UK Version)  LEAFLET
[ Full Text Here ] New Zealand Version also reproduced in Issue No.5 - May 1997 of LINC-PIN
Author(s): J.M.Walker Ph.D., PT, AM Whelan, Phar. D, 1996.
UK Version Editor: Andrew Francis Forde MRPharm. B.Sc.Hons 1997
Original Publication: Originally written for Nova Scotia Polio Survivors Support Group.
Abstract/Extract: Medications (drugs), may be by prescription (Rx), or Over-The-Counter (OTC). As a polio survivor you should become an informed user of drugs.

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Title: Nutrition and Post Polio Syndrome
[ Full Text Here ] Author(s): Janice Hartman
Abstract/Extract: Let me first say that I am no expert here, but my training is in Nutrition and Education. I must caution all of you trying to lose weight to please do it sensibly. A low fat diet (with portion control) and exercise (to whatever degree you can do) works the best.

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Title: Experiences Adapting To BiPAP+Mask Technology
[ Full Text Here ] Author(s): David Ronfeldt
Abstract/Extract: The following memorandum was prepared by David Ronfeldt at Joan Headley's request for a recent GINI conference.
At your request, this memo elaborates on my difficulties adapting to the BiPAP+mask technology, and offers some points that may be useful for other people to read who are concerned about adapting with difficulty.

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Title: Take a Look at Estrogen - Hormone Therapy May Be Right For Women With PPS
[ Full Text Here ] Author(s): Tom Walter
Original Publication:SJU Polio mailing list.
Abstract/Extract: Recently I read that nearly half of all post-menopausal women in the United States who are candidates for taking the hormone Estrogen are not doing so. That could be a mistake with long-term consequences for them, and in particular for women with PPS who don't produce Estrogen at all because they've had both ovaries removed or who have a lowered production of Estrogen during and after menopause.

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Title: Do PPS Cometh After A Fall?
[ Full Text Here ] Author(s): Richard L. Bruno, PhD
Original Publication:"New Mobility", May, 1997
Abstract/Extract:

About once a month I get a call from an attorney somewhere in these litigious United States. I am asked to be the expert witness for a polio survivor who's been rear-ended in their car, hit by a bus, taken a header down some stairs or simply slipped and fell.

Regardless of the type of accident, the lawyer always asks the same question: Can a traumatic event trigger Post-Polio Sequelae, the new and sometimes disabling muscle weakness, fatigue, pain and respiratory problems that occur is as many as 77% of polo survivors?

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Title: The Contribution Of Childhood Physical And Emotional Trauma To The Development Of The Post-Polio Personality
[ Full Text Here ] Author(s): Nancy M. Frick, M.Div, Lh.D.
Original Publication: Proceedings of the Ontario March of Dimes Conference on Post-Polio Sequelae. Toronto: Ontario March of Dimes, 1995. Revised April 2000.
Abstract/Extract: Do you remember the old TV program Truth or Consequences? The master of ceremonies used to ask questions and if contestants answered them correctly, they got lots of great prizes, dishwashers and so on, and presumably went home and lived happily ever after. But, if they answered the questions incorrectly, terrible things would happen to them. As you read on, you will be asked many questions about yourself. If your answers are incorrect, the consequences for you will be Post-Polio Sequelae (PPS).

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Title: Silicon, Sex and Polio Survivors
[ Full Text Here ] Author(s):Dr. Richard L. Bruno
Original Publication: Post-Polio Service, Kessler Institute for Rehabilitation 1995
Abstract/Extract: Last January I got a brand new Macintosh computer that came with a modem. Ever since I've been "surfing" the Internet, hardly stopping for food or sleep. You'd be amazed at what I'm finding on the disABILITIES bulletin boards: Sex. Yes, unbridled, undiluted and unimpeded discussions about sex among people with all kinds of disabilities, from high-level quads to quadruple amputees. However, there is one place where I've heard no discussion of sex: the Post-Polio bulletin board. There are lots of questions about PPS that you had the answers to years ago: Do I have ALS; does exercise make you weak; where can I get a scooter? But, not one question or comment about sex.

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Advise your Doctors

See also the Catalogue for Medical Professionals, especially the Post-Polio Patient Management section, which contains articles additional to those listed here.

Title: Post Polio Sequelae: An Explanation for Health Professionals LEAFLET
[ Full Text Here ] Author(s): J. M. Walker, PhD, PT, K. Sweet, BSC(Physio)
Original Publication: Originally written for Nova Scotia Polio Survivors Support Group. Revised 1996.
Abstract/Extract: Discusses What is post polio syndrome?, Who is more at risk for PPS?, Why may some polio survivors develop PPS? and What can be done?.

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Title: Poliomyelitis New Problems From An Old Infection
[ Full Text Here ] Author(s): John Shneerson MA DM FRCP FCCP
Original Publication: National Association of Fundholding Practices Official Yearbook 1998
Abstract/Extract: There are currently around 30,000 post-poliomyelitis survivors in the UK, although the last major epidemic was over 40 years ago. Around half of these will develop the post-polio syndrome which is a recently recognised disorder characterised by late onset of weakness in muscles affected during the acute illness. Indirect effects of polio, especially degenerative disorders of the joints and soft tissues also contribute to the increasing disability that these patients are developing. It is essential to accurately analyse the cause of any new symptoms in polio survivors so that specific treatments can be applied, or modifications to their pattern of activities recommended.
Additional Note: The 404 page Yearbook was circulated to 2,500 fundholding practices in the United Kingdom.

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Title: Unusual Cases: Postpolio syndrome
[ Full Text Here ] Author(s): Paul Ballinger MRCP, MRCGP, DCH, DRCOG
Original Publication: UPDATE The Journal of Continuing Education for General Practitioners 4th November 1998 Volume 57 Number 8 774-776
Abstract/Extract: Of the estimated 30,000 Britons with residual limb weakness from old poliomyelitis, about a quarter go on to develop postpolio syndrome (PPS) many years after the original illness. The weakness and muscle pain they endured as children revisits them after 30-40 years of stability, only this time in a more chronic, insidious and deceptive fashion.
Additional Note: According to the Audit Bureau of Circulations, a previous issue of Update (20 May 98) was distributed to 32,457 subscribers under Controlled Circulation Terms of Control which offers free subscription to "Full time general practitioners and vocational trainees in the national health service and clinical tutors in post-graduate centres and FHSA general managers and doctors".

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Title: Management of post-polio syndrome
[ Full Text Here ] Author(s): Daria A. Trojan, Lois Finch
Original Publication: NeuroRehabilitation 8 (1997) 93-105
Abstract/Extract: Many patients with post-poliomyelitis syndrome can benefit from a management program. When a post-polio patient presents with new symptoms, it is first essential to identify and treat other medical and neurological conditions which could produce these symptoms. New weakness can be managed with exercise (stretching, strengthening, and aerobic), avoidance of muscular overuse, weight loss, orthoses, and assistive devices. Fatigue can be managed with energy conservation techniques, lifestyle changes, pacing, regular rest periods or naps during the day, amitriptyline to improve sleep, and possibly pyridostigmine (trial in progress). The management of pain is dependent upon its cause. The treatment of post-polio muscular pain can include activity reduction, pacing (rest periods during activity), moist heat, ice, and stretching, use of assistive devices, and life style modifications. Fibromylagia can be treated with amitriptyline, cyclobenzaprine, and aerobic exercise. Joint and soft tissue abnormalities can be managed with modification of extremity use, physiotherapy, orthoses, assistive devices, non-steroidal anti-inflammatory medications, and rarely steroid injections and surgery. Superimposed neurological disorders may produce pain, and should be identified and treated. The identification and treatment of pulmonary dysfunction in a post-polio patient is an important aspect of management, and is discussed elsewhere in this issue. Dysphagia can be managed with diet changes, use of special breathing and swallowing techniques, monitoring fatigue and taking larger meals earlier and smaller meals later, and avoiding eating when fatigued. The management of psychosocial difficulties usually requires an interdisciplinary approach, and may include a post-polio support group, social worker, psychologist, and psychiatrist. © 1997 Elsevier Science Ireland Ltd.

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Title: Subspecialty Clinics: Physical Medicine and Rehabilitation
Management of Postpolio Syndrome
[ Full Text Here ] Author(s): Gudni Thorsteinsson, M.D.
Original Publication: Mayo Clin Proc 1997;72:627-638
Abstract/Extract: Recent research has shed light on the pathogenesis of the postpolio syndrome and has helped explain its symptoms and the rationale for management. The aim of this article is to familiarize physicians with this syndrome. The history, acute infection, definition, and diagnosis are discussed, as well as the various symptoms and their management. People with postpolio syndrome can educate health professionals about this condition and can help others inflicted with this syndrome. Thus far, no cure is available. A correct diagnosis is important, and the physician must realize that severe comorbidities tend to afflict people with this syndrome. Numerous management options are available to help these people enjoy a high quality of life.

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Title: Assessment and Differential Diagnosis for Post-Polio Syndrome
[ Full Text Here ] Author(s): Lauro S. Halstead, MD
Original Publication: Orthopedics November 1991 Vol 14 No. 11 1209-1217
Abstract/Extract: Proper assessment of post-polio patients presents both a challenge and a dilemma: a challenge because of the non-specific nature of many of the symptoms and the complex interplay between psychological and physical features; a dilemma because of the absence of specific diagnostic tests, the continuing uncertainty of the underlying cause or causes, and the lack of any curative therapeutic intervention. Nonetheless, despite these obstacles, there is still much that can be done to ameliorate symptoms and improve function in the long-term management of these patients.

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Title: Non-Paralytic Polio and PPS
[ Full Text Here ] Author(s): Marcia Falconer, Ph.D. cell biology and Eddie Bollenbach, M.A. biology
Original Publication: Lincolnshire Post-Polio Library Publication, January 1999
Abstract/Extract: Post-Polio Syndrome can occur in nearly half of the people who have a history of non-paralytic polio. It was believed that no neuronal damage occurred during non-paralytic polio. However autopsies of non-paralytic polio cases show that damage to the central nervous system could be almost as severe as that found in cases of paralytic polio. The causes of post-polio syndrome remain unknown but may include loss of neurons compromised during the acute illness, persistent poliovirus infection, and immune reactions. Some cases of non-paralytic polio were caused by enteroviruses other than polio virus. During the acute illness, the symptoms mimicked that of poliomyelitis. It is not known if such infections will result in fatigue and new muscle weakness many years after the acute illness. A history of any kind of polio, indicates the disease may have been severe enough to result in neuronal damage and consequently may put the person at risk for post-polio syndrome.

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Title: Pain And Post-Polio Syndrome - An Overview
[ Full Text Here ] Author(s): Paul E. Peach, MD.
Original Publication: Unknown. Received from Dr. Peach July 1999.
Abstract/Extract: Polio survivors, not unlike the general population, will likely experience pain at some points in their lives due to a myriad of reasons. Unlike the general population, however, polio survivors are somewhat more likely to experience pain as a consequence of the residual paralysis or paresis of chronic polio. If a polio survivor is experiencing pain, this does not necessarily mean that the pain is a symptom of post-polio syndrome. Taking this yet one step further, even if a polio survivor has been appropriately diagnosed with post-polio syndrome and is experiencing pain, this does not necessarily mean that the pain is due to the symptoms of post-polio syndrome. If pain is being experienced, it is essential that an appropriate medical evaluation be made because the pain could be due to any number of factors ranging from very benign to quite serious.

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Title: An Approach To The Patient With Suspected Post Polio Syndrome
[ 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.

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Title: The late effects of Polio
Information for Health Care Providers
[ Full Text Here ] Author(s): Charlotte Leboeuf
Original Publication: The Commonwealth Department of Community Services and Health (Australia) 1991/1992.

Abstract/Extract: It is hoped that this book will be of benefit to all members of the health care professions, who may come into contact with people who require assistance with the management of the late effects of polio.

It is the purpose of this book to provide a review of the contemporary literature regarding the circumstances which surround the new symptoms experienced by many people who had polio.

This review also includes brief accounts of the history of polio, its cause, spread, clinical features, symptoms, treatment and prevention.

Finally, it provides some information regarding practical assistance for those who are struggling to manage the late effects of polio.

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Title: Polio returns to haunt G.P.'s
[ Full Text Here ] Author(s): Thomas Moore
Original Publication: GP November 1992
Abstract/Extract: Up to two thirds of people who suffered paralytic polio as children are likely to develop new symptoms similar to motor neurone disease.

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Title: The Cause And Treatment Of Post-Polio Fatigue
[ Full Text Here ] Author(s): Richard L. Bruno, Ph.D., Nancy M. Frick, Lh.D., Susan J. Creange, M.A., Todd Lewis, Ph.D., and Terry Molzen, M.S.
Original Publication: Healthy Partnerships. Ontario: March of Dimes, 1995
Abstract/Extract: Fatigue is the most commonly reported, most debilitating and least studied Post-Polio Sequelae (PPS) affecting the nearly 2 million North American polio survivors. Among polio survivors, 91% reported new or in creased fatigue, 41% reported fatigue significantly interfering with performing or completing work and 25% reported fatigue interfering with self-care activities . Fatigue was reported to be triggered or increased by physical overexertion in 92% and by emotional stress in 61%. Importantly, polio survivors distinguish between the physical tiredness and decreased endurance they associate with new muscles weakness, and a 'brain fatigue' that is characterized by problems with attention and thinking. Between 70% and 96% of polio survivors reporting fatigue complained of problems with concentration, memory, attention, word-finding, maintaining wakefulness and thinking clearly, with 77% percent reporting moderate to severe difficulty with these functions.

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Title: Post-Poliomyelitis Fatigue Where Is The Lesion? The Controversey - Three Points Of View
[ Full Text Here ] Also reproduced in Issue No.8 - November 1997 of LINK-PIN.
Author(s): Dr. Neil Cashman (Dr. Richard Bruno and Dr. Robert Miller)
Original Publication: A Report of a Special Neurology Rounds At The Montreal Neurological Institute And Hospital September 26, 1997.
Abstract/Extract: A lightly edited resumé delivered by Dr. Cashman at Polio Quebec's Annual General Meeting the following day appears below for those who were unable to be with us or who would like to "hear" it again.
"Post-polio fatigue is probably the most common and certainly one of the most disabling symptoms that occur after polio. There is a great deal of controversy in the field as to what is causing the fatigue. The stakes are very high, because if we were to understand what is causing the fatigue then we could design a treatment or therapy that would help counter it.

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Title: Spinal tap for PPS? NO !!!
[ Full Text Here ] Author(s): Tom Walter
Abstract/Extract: Over the past couple of years some interesting and exciting discoveries have been made about the polio virus that were unknown before. Researchers at the National Institutes of Health in Bethesda, Maryland (USA) and at the Pasteur Institute in France have been able to identify fragments of mutated polio virus RNA genetic material from the spinal fluid of people who had "wild" polio (like most of us) and from the spinal fluid of those who had the polio vaccines.

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Title: A Letter to a Polio Survivor
[ Full Text Here ] Also reproduced in Issue No.5 - May 1997 of LINC-PIN
Author(s): Professor Richard L. Bruno PhD
Abstract/Extract:
The following is a genuine letter which has been depersonalised.
Publication at the suggestion and with the permission of Professor Richard L. Bruno PhD
Dear Polio Survivor:
1) You were asked if you have evidence that you in fact had polio.

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Title: The Mayo, The Lancet, and The Revolting Polios
[ Full Text Here ] Also reproduced in Issue No.5 - May 1997 of LINC-PIN
Author(s): Compiled by Helena Edwards, Leicestershire Post-Polio Network. Contributors: Frederick M Maynard, MD, Dr. John Petrie, MB FRACP, Professor Mary T. Westbrook, Richard L. Bruno, PhD and Anthony J. Windebank, MD.
Abstract/Extract: Comments on Windebank AJ, Litchy WJ, Daube JR, Iverson RA. Lack of progression of neurologic deficit in survivors of paralytic polio: a 5 year prospective population-based study. Neurology1996; 46: 80-84.

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Advise your Surgeons

The first document is really intended for Polio Survivors but is included here as a necessary precursor to 'Advising your Surgeons'.

Title: You are going to have surgery - A Guide for Polio Survivors LEAFLET
[ Full Text Here ] Author(s): J. M. Walker, PhD, PT.
Original Publication: Originally written for Nova Scotia Polio Survivors Support Group. 1996.
Abstract/Extract: Discusses Why preparation for any surgery may be important, For what types of surgery is this important?, and What to do when surgery is required.

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Title: Polio Survivors as Patients - Guide for Emergency Care & Surgical Health Workers LEAFLET
[ Full Text Here ] Author(s): J. M. Walker, PhD, PT, C. McGowan & G. Vardy.
Original Publication: Originally written for Nova Scotia Polio Survivors Support Group. 1996.
Abstract/Extract: Discusses Concerns of Polio Survivors that may require attention, Response to Medications, why special attention is needed, Special Considerations for the patient who is a polio survivor & especially those with PPS and Important questions to ask of patients in the Emergency Care setting.

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Title: Preventing Complications In Polio Survivors Undergoing Surgery
[ 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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Advise your Physiotherapists

Title: Strategies for Exercise Prescription in Post-Polio Patients
[ Full Text Here ] Author(s): Anne Carrington Gawne, M.D.
Original Publication: Reprinted from POST-POLIO SYNDROME, edited by Halstead & Grimby, © 1995 Hanley & Belfus, Inc., Philadelphia, PA. Chapter 9, pp 141-164.
Abstract/Extract: Appropriate exercises have been shown to improve muscular strength and endurance, improve range of motion, and reduce functional deficits associated with many disabilities. In dealings with the patient with a history of polio, however, several questions arise: How much exercise is enough, and when is it too much? What kinds of exercise are best? What kinds of exercise may he harmful? And are there any guidelines to prescribe a safe and effective exercise program? To answer these questions, it is helpful to first understand the basic principles of exercise physiology, as well as the pathophysiology involved in post-polio syndrome. Following a discussion of these issues is a review of the literature on the effects of exercise in neurologically intact and post-polio individuals. Finally, a new classification system is presented, which will facilitate the prescription of exercise regimens that are both safe and effective in this population.

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Title: Physiotherapy Management of The Late Effects Of Polio
[ Full Text Here ] Author(s): Christine Uriadka
Original Publication: Revised transcript of presentation given by the author in Winnipeg, Canada April, 1997
Abstract/Extract: I am a physiotherapist currently working in the Post-Polio Clinic at West Park Hospital, a rehabilitation and specialized continuing care hospital in Toronto, Ontario, Canada. In my discussion, I will touch upon several broad areas related to post-polio issues. I'll begin by discussing why it is essential for clinicians to be aware of how to manage the late effects of polio. I will go on to provide a general profile of the physical symptoms and functional difficulties that arise in the post-polio population, and talk about how these new concerns develop. This description would not be complete without addressing the emotional coping issues and lifestyle adaptations that accompany the physical changes. I would then like to discuss a number of symptom management approaches, from the physiotherapy perspective. After this, I will provide an overview of the structure of the Post-Polio Clinic at West Park Hospital.

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Title: Tips for Physiotherapists
[ Full Text Here ] Also reproduced in Issue No.2 - November 1996 of LINK-PIN
Abstract/Extract:

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Title: Post-Polio And Physical Therapy
[ Full Text Here ] Also reproduced in Issue No.3 - January 1997 of LINK-PIN
Author(s): Susan L Fish MAPT
Abstract/Extract: During recent years, I have had the opportunity to meet and work with patients experiencing the late effects of polio. Many times I have detected some frustration and anger regarding my professionals lack of experience in treating Post-Polio patients. I write this brief article now for two reasons.
  1. to explain and help you understand this lack of knowledge on the part of many of my colleagues.
  2. to provide some guidelines regarding Do's and Don'ts when seeking physical therapy.

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Title: Exercise - What Is Right For You
[ Full Text Here ] Also reproduced in Issue No.3 - January 1997 of LINK-PIN
Author(s): Mavis J. Matheson. MD.
Original Publication: April 1995 (updated 2005).
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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Advise your Occupational Therapists

Title: Occupational Therapy and the Postpolio Syndrome
[ Full Text Here ] Author(s): Grace R. Young
Original Publication: American Journal of Occupational Therapy, Vol 43, No. 2, February 1989, 97-103
Abstract/Extract: Approximately 75,000 polio survivors are experiencing new weakness, pain, and fatigue that are related to their initial disease. These problems affect their functional ability; therefore, they are of concern to occupational therapists. Overwork of a weakened neuromuscular system is believed to be the cause of these late symptoms. This article reviews current writings on the late effects of poliomyelitis. An understanding of the symptoms, causality, and psychosocial ramifications of this phenomenon facilitates effective occupational therapy intervention. Guidelines for occupational therapy assessment and treatment are included.

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Title: Energy Conservation, Occupational Therapy, and the Treatment of Post-Polio Sequelae
[ Full Text Here ] Author(s): Grace R. Young, MA, OTR
Original Publication: Orthopedics November 1991 Vol 14 No. 11 1233-1239
Abstract/Extract: Individuals experiencing post-polio sequela (PPS) are usually advised to make significant lifestyle changes to lessen symptoms and prevent further decline in function. The individuals have spent most of their lives equating success with over-achievement and find it difficult to implement such recommendations. As specialists in energy conservation and work simplification, occupational therapists increasingly are being called on to evaluate and treat these patients. Over the past 2 years, an occupational therapy educational program has been developed to educate patients about their condition and about ways to implement lifestyle changes while preserving the ability to do valued activities. This article describes the components of a thorough occupational therapy evaluation and the design and functional outcomes of a successful occupational therapy educational program to treat PPS.

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Title: A Look At Feet (for people with the late effects of polio)
[ Full Text Here ] Author(s): Beth Rose, B.A., B.Sc.(O.T.).
Abstract/Extract: Many people with the late effects of polio demonstrate foot problems. Some are mild problems, while some are more severe. Harley said that Polio may have affected some, but not all, of the muscles of the lower extremities. This partial paralysis can therefore create a muscular imbalance between opposing muscle groups of the foot and ankle, often leading to a Pes Planus (flat foot), Pes Cavus (high arched foot), abnormal pronation, abnormal supination, and gait abnormalities. Various other problems can then ensue, such as calluses, corns, Hammer toes, or Hallux Valgus... Proper fitting, supportive footwear and custom-made foot orthoses can alleviate many of the problems seen with the feet, such as calluses, corns, plantar fasciitis, metatarsal problems and bunions.

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Advise your Dental Practioners

Title: Be True To Your PPS And Your Teeth Won't Be False To You:
Preventing Complications In Polio Survivors Undergoing Dental Procedures
[ Full Text Here ] Author(s): Richard L. Bruno, Ph.D.
Original Publication: PPS Monograph Series. Volume 6(1):1-8. 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 with surgery. This is a brief overview to inform patients and professionals about the cause and prevention of complications in polio survivors undergoing dental surgery.

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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.

Whether you are a Polio Survivor, a friend or relation of a Polio Survivor, or a Medical Professional, we would advise you use this catalogue only to assist in determining your reading priorities. Every article in this library is likely to contain information of interest to both Polio Survivors and Medical Professionals.

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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 1997 - 2009.

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