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Patient Education Handbook
B. What is Post-Polio Syndrome?
C. Possible Causes and Stages
D. Incidence and Risk Factors
This booklet has been developed for individuals attending the Montreal Neurological Hospital and Montreal Neurological Institute Post-Polio Clinic and their families. It is meant as an overview of the current information on the late effects of poliomyelitis. Please ask the Clinic Team if you have additional questions or require clarification of the information presented in this handout.
B. What is Post-Polio Syndrome?
The late effects of poliomyelitis or as it is often called, "Post-Polio Syndrome" (PPS), are a variable set of new symptoms ranging from severe fatigue which may follow moderate activity to generalized joint and muscle pain, muscle cramping and progressive muscle weakness. As well, breathing problems, difficulty sleeping and increased sensitivity to cold may be present. A large percentage (up to 50%) of the individuals who contracted paralytic poliomyelitis earlier in their lives are now experiencing at least some of these symptoms.
C. Possible Causes and Stages
The reason that these symptoms occur in post-polio individuals is poorly understood. However, a number of theories have been proposed as to why these individuals develop problems as time progresses. There are four recognized stages in patients who have recovered from paralytic poliomyelitis:
1. During the first or acute stage of paralytic polio, the polio virus infects the spinal cord and destroys all or a portion of the motor nerve cells which transmit information for muscle control to a particular muscle. Paresis, or partial paralysis results when a portion of motor nerve cells innervating a muscle are destroyed because the link between the spinal cord and muscles is interrupt-ed. If all motor nerve cells to a particular muscle are destroyed, complete paralysis (inabili-ty to contract that muscle) will occur. Normal motor units and the acute stage of para-lytic polio is illustrated in the first two drawings of the Figure. A motor unit is defined as a motor neuron (motor nerve cell) and all the muscle fibers (muscle cells) that it innervates.
2. In the second stage, or recovery phase, healthy motor neurons attempt to compensate for the lost connections by growing sprouts and connecting to the muscle fibers whose nerve cells have been destroyed by the virus. This is known as collateral re-innervation. This is not a very efficient way of activating these muscle fibers, but some or all of the ability to activate the muscle is restored. In addition, the innervated muscle fibers may enlarge through exercise, and further improve the force of muscle contraction. This is why we may see improvement after the acute infection. The third drawing in the Figure illustrates the recovery phase after acute paralytic polio.
3. The third stage is a period of stability which usually lasts several decades. During this stage, patients are stable, both neurologically and functionally. This period is thought to be characterized by a "continuous remodelling process". During this stage, some motor nerve sprouts may degenerate, but new sprouts are formed by neighboring nerve cells with reinnervation of the affected- muscle fibers.
4. The fourth stage is a period of decline. It usually starts approximately 3 to 4 decades after polio infection. The most common symptoms are progressive muscle weakness, fatigue, and cramping. Muscle atrophy (or loss of muscle bulk) may also occur in a smaller propor-tion of patients. These symptoms are identified as PPS. It may be caused by "overwork" and/or the normal ageing process. The surviving motor nerve cells which have been con- trolling many more muscle fibers than normal, may gradually give out due to overwork. A distal degeneration of over-extended nerve cells may occur. In addition, motor nerve cells may be lost due to the natural ageing process. This occurs in all people, whether they have had polio or not. By the time individuals reach their 70's or 80's, there may be a loss of approximately 20-30% of these nerves. Because individuals with polio started with fewer motor nerve cells to innervate their muscles, the natural loss of these nerve cells with ageing will be that much more noticeable. In other words, they will tend to be weaker and more easily fatigued than an unaffected individual. The distal motor nerve cell degeneration with disintegration of sprouts is illustrated in the fourth drawing in the Figure.
D. Incidence and Risk Factors
It appears that as many as 1/4 to 1/2 of polio survivors are experiencing new health problems. Persons who are more likely to experience the late effects of polio are those who had severe acute paralytic poliomyelitis. Other possible contributing factors are a greater functional recovery after acute polio, current age (the normal aging process), length of time since acute polio, recent weight gain, and exercising to the point of muscle pain.
1. Fatigue and Muscle Weakness
Fatigue can be so severe in some individuals that they must rest in the middle of the day. The onset of fatigue is often sudden and may be accompanied by a headache, a feeling of weak-ness, hot and cold flashes, and sweating. The phenomenon is often referred to as the "Polio Wall". Most commonly, the Polio Wall is experienced in the mid to late afternoon on a daily basis. The best way of dealing with these symptoms is to take short 15-20 minute periods of complete rest before any symptoms are felt. Another way is to reduce the amount of activity performed during the day. This may help control the occurrence or the severity of the symp-toms.
The symptoms of excessive fatigue and muscle weakness often develop approximately 30-40 years after the initial onset of polio. The progression of muscle weakness appears to involve muscles previously weakened by polio, as well as muscles originally thought to be unaffected by the disease. However, new weakness occurs more frequently in muscles previously affected by paralytic polio. -Most likely, the muscles originally thought to be unaffected by polio had mild involvement or subclinical involvement initially.
Muscle pain may be experienced in various locations such as the back, neck or shoulders. Chronic weight bearing and overuse of unprotected joints may cause stress which often results in pain. Generalized achiness comparable to that felt with the flu may be experienced.
One explanation for this pain is that there may have been injuries to the musculoskeletal system. These may occur in the post-polio population because of the tendency to use a strong part of the body to compensate for a weakness elsewhere. Abnormal postures affect the balance of the body and require greater effort from specific muscles which may result in pain.
It is often reported that pain is worse following vigorous exercise. This should be viewed as a sign that affected muscles have been overused and that perhaps a milder form of exercise is indicated.
Muscle cramping is another indication of muscle overuse. Individuals experiencing this symptom are advised to reduce their level of activity and to rest more often. Another cause for generalized pain is fibromyalgia. This is a disorder characterized by chron-ic, generalized muscle pains of unknown etiology. It is found commonly in a post-polio clinic, and can improve with certain treatments.
Less clearly understood is the pain that follows exposure to cold temperatures. This decrease in limb temperature is often described as a severe burning pain, colour changes, and mottling of the skin. Both the coldness of the skin and the pain tend to be long-lasting. Often, hours of warming are required to relieve the symptoms. Those affected by post-polio symptoms often report that both manual dexterity and muscle strength decrease noticeably with exposure to cold, and become more pronounced with aging. These individuals are advised to be aware of cold temperatures and to dress warmly.
3. Sleep Disturbances
It has been noted that some individuals, especially those who experienced initial respiratory involvement, may experience a change in their sleep patterns. Sleep apnea, which is a brief shortage of oxygen to the brain during sleep, may awaken the individual. The individual may have a morning headache or be unrested on awakening. If sleep apnea is suspected, further testing will need to be performed by a pulmonary specialist.
Poor sleep may also be produced by pain. Rest periods may be required to help alleviate daytime fatigue from poor sleep. These should be taken before the point of feeling tired.
The aim in polio management is to preserve the healthy motor nerves. Every person experiencing the symptoms should undergo a medical assessment. There is no specific diagnostic test for PPS, therefore it is very important to make sure there are no other causes of the new difficulties. Early recognition, corrective procedures, education, use of assis-tive devices, and occasionally use of medications can help to reduce the symptoms described above. Effective treatment regimens can be prescribed on-an individual basis.
1. Energy Conservation
Saving energy is a learned skill and often requires a change in ways of thinking and life-long habits. Energy conservation allows for the pursuit of leisure activities in balance with activi-ties of daily living. Following the basic principles of energy conservation involves using common sense to find easier and more efficient ways of doing activities. Energy conservation techniques applied to personal care and homemaking tasks increase endurance, maintain strength and muscle power. It is the technique that requires the least amount of effort within a given time that gives the most satisfactory result. An individual's willingness to change is the key to effective energy conservation.
Some of the recommendations for saving energy are:
Analyze how much energy you have in one day. How will you use the energy? What are your priorities and goals? (Be realistic.)
Look at the tasks you do during the day and eliminate those which are not essential.
Take time to rest. Establish a flexible schedule which allows adequate rest periods during the day.
Set up workstations and see that all necessary equipment and supplies are present and easily within reach.
Learn how to pace yourself. Take your time with tasks and rest before you are tired.
Try to perform most tasks sitting down, as sitting requires 50% less energy than standing.
Avoid lifting heavy items and, most importantly, do not take chances with safety.
Remember that you do not always have to change what you do, just the way you do it!
These changes will take some practice but can be invaluable in helping to save energy.
Muscles affected by the polio virus lack the endurance of normal muscles and thus are prone to early fatigue. Repeated overuse of these muscles, pushing them past their point of fatigue, is presently thought to accelerate muscle weakness after paralytic polio. A symptom of over-fatigue is increased muscle cramping and pain. It is therefore recommended that the polio survivor rest at the first sign of fatigue. Also, in being careful not to overwork "polio" muscles, exercise should be minimal. Generally, the best type of exercise for the polio popula-tion involves gentle stretching (to relieve muscle pain, cramping and maintain or improve joint mobility), conditioning (to increase endurance) and low resistive (to maintain/increase strength) exercises such as swimming, riding a stationary bicycle with little tension, a walking program, a low level strengthening program for specific muscles, or Tai Chi, yoga. Again, to preserve motor units, it is essential to stop exercising (or any activity) and rest at the first sign of fatigue or muscle cramping. There does need to be a balance between rest and exercise/activity: too little exercise or activity will cause weakness from disuse; too much exercise/activity may cause further weakness and muscle cramping and pain. Therefore, some form of gentle exercise is recommended for most polio patients; however, some patients may be too weak and fatigued to perform any additional exercise. It is best to have an individualized exercise program designed by a physiotherapist to suit your needs and abili-ties, if exercise is appropriate.
3. Assistive Devices
Assistive devices such as canes, crutches, wheelchairs, equipment to aid in activities of daily living, and orthoses (braces) may also be recommended for some individuals. These devices may improve mobility, improve safety, decrease pain, and prevent deformities. Even though these types of devices are obvious reminders of polio and may be difficult to accept, they are important to consider since they can be very helpful.
4. Emotional Impacts
The onset of the late effects of polio affect the physical, the emotional and the psychological well-being of the individual. Adjustments to polio symptoms may affect activities both in the home and in the workplace, social interaction with family and friends and life skills. Each of these situations can be stressful and create anxieties for individuals and families. Past strate-gies of coping with pain, fatigue and weakness, may no longer be helpful and new ways need to be learned. It may be difficult to ask for assistance and many people only do so in a crisis situation.
Others see asking for help and/or using assistive devices as a step toward dependency. Regardless, it is important to understand that by adjusting to ones' limitations, further deterio-ration can be minimized. Meanwhile, independence can be maintained and quality of life ensured.
Some medications are available to treat specific symptoms. Pain from arthritis, bursitis, tendonitis may respond to medications such as acetominephen, aspirin, ibuprofen and other similar medications. New non-steroidal anti-inflammatory medications (similar to ibuprofen) which produce much less gastro-intestinal difficulties are now available. Pain from fibromyalgia (a disorder characterized by chronic, generalized muscle pains) may improve with amitriptyline (Elavil) and other medications/treatments. Fatigue from PPS may improve with pyridostigmine (Mestinon). In addition, new medications may become available for treatment of weakness and fatigue in the next few years. If possible, it is also important to avoid some medications which may increase muscle fatigue/weakness and general fatigue. Some anesthetics should be avoided, and it is important to notify your anesthesiologist prior to surgery that you have had polio.
1. Polio Quebec Association
The Polio Quebec Association was formally founded on October 14th, 1986, to represent the interests of people who have had polio. The Association has many functions. Its objectives are:
To create and maintain a registry in order to compile, publish
and dis-seminate information about polio and available services aimed at improving the quality of life of per-sons with PPS.
To exchange ideas and information with local, provincial,
National and international organizations through newsletters and other media.
To encourage research into the treatment and possible cure of
To foster public awareness about polio, PPS and the importance
of preventive measures.
To advocate on behalf of people who had polio.
For more information on the Association, or to become a member, please contact the Polio Quebec Association at:
Association Polio Québec Association
Montréal, Québec H1S 2Z5
Montreal: (514) 935-9158 (English)
259-2451 / 932-6092 (French)
2. CLSC (Local Community Service Center)
The CLSC provides basic health care services and check-ups from a multi-disciplinary team comprised generally of doctors, nurses, physiotherapists, occupational therapists, and social workers. They also have visiting homemakers who provide help in the household and with personal care. For example, they can offer assistance in cleaning the house and with bathing. They can also help with some shopping, banking, and laundry. Visiting nurse services may also be provided for the patient who is not fully autonomous. For further information on these services, please contact the CLSC in your local area.
3. The March of Dimes
The March of Dimes was founded in 1951 in response to the great polio epidemics of the 1930's and 1940's. Its purpose was to find ways to prevent the disease and to assist in polio rehabili-tation.
Following the discovery of the Salk vaccine in 1955, new cases of polio diminished. The March of Dimes had achieved its objective and polio became a forgotten disease. Approximately 25 years later, new problems affecting the lives of polio survivors appeared. Recognizing and addressing the late effects of polio became a real and valid concern.
The Quebec March of Dimes has been supportive of the Polio Quebec Association, and has provided some funding of the Association and of research in the past.
The Ontario March of Dimes has been very responsive to the needs of post-polio individuals and has sponsored several conferences on the late effects of polio. Audio cassette tapes from these conferences, other educational material and conference proceedings are available. For more information about any of the above, contact their Post- Polio Coordinator at:
Ontario March of Dimes
60 Overlea Blvd
Toronto, Ontario M4H 1A4
Tel: (416) 425- 3463
The international office of the March of Dimes in White Plains, New York, is organizing an international symposium on PPS, which will take place in May 2000.
4. GINI (Gazette International Networking Institute)
The late Mrs. Gini Laurie was the founder of the Rehabilitation Gazette. Published in St. Louis, Missouri, the magazine has over 50,000 readers in 85 countries. This bi-annual journal offers practical advice and equipment tips for people with physical disabilities.
Gini Laurie, a long time advocate for the independent living movement, was among the first to recognize post-polio problems. Letters from her readers discussing their problems and con-cerns prompted her to organize the first international conference on post- polio issues which was held in Chicago in 1981. This organization has organized an international post-polio conference every few years. Since the illness and death of Gini Laurie, Joan Headley has been the Executive Director of the organization. For further information write or call:
4207 Lindell Blvd, Suite 110
St. Louis, MO 63108-2915, USA
Tel: (314) 534-0475
In addition, Gini Laurie published a practical book entitled "Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors". A new edition of this book appeared in 1999. This book can be purchased from GINI at the above address.
5. The Montreal Neurological Hospital and Montreal Neurological Institute Post-Polio Clinic
This clinic was started by Dr. Neil Cashman, Neurologist. Dr. Daria Trojan, physiatrist, joined Dr. Cashman in 1989 and to this time more than 800 patients have been evaluated. Since Dr. Cashman's departure in 1998, Dr. Trojan has been the Director of the Post-Polio Clinic. The consulting Neurologist for the clinic is now Dr. Daniel Gendron. Our work on PPS and with post-polio patients continues to involve three broad areas: (1) clinical care of post-polio patients; (2) education of health care professionals and lay individuals; (3) clinical research on PPS.
Currently, a first-time clinic appointment usually involves an evaluation by Dr. Trojan. Subsequently, at another appointment, patients may also be evaluated by Dr. Gendron, Neurologist and Director of EMG Laboratory at the MNH. Dr. Gendron may perform electromyography (EMG) studies on some patients. Follow-up visits occur every 6 to 12 months. Some patients are also referred to a pulmonary specialist at the Royal Victoria Hospital (RVH) with a special interest in post-polio problems. Many patients are referred to physiotherapy and occupational therapy of the MNH. Patients can also be referred to orthotists (outside of the hospital) for braces and assistive devices, if necessary. Social service consultations are also available at the hospital, if necessary.
The post-polio clinic provides volunteers for several ongoing clinical studies. The multi-centered, randomized, double-blinded placebo- controlled trial of pyridostigmine (Mestinon) in PPS has been completed. This was the first multi-centered clinical trial in this disorder. The placebo-controlled phase of the trial has been analyzed, and the results published in October 1999. The open-label phase of the study (which consisted of an evaluation 6 months after the completion of the placebo-controlled phase of the trial) is being analyzed. Six centers in Canada and the United States participated in this trial; the primary center was in Montreal. We are also performing other analyses of the data collected during this clinical trial. The goals of these analyses are to determine (1) if serum insulin-like growth factor-I (IGF-I) is associated with various clinical parameters in PPS, such as isometric strength, fatigue and quality of life; (2) the clinical parameters which have the most important impact on quality of life in PPS patients; and (3) the predictive factors and correlates for muscle and joint pain in PPS patients.
Other similar clinical studies which are in progress include another smaller placebo-controlled, discontinuation trial of pyridostigmine in patients who are regularly taking the medication, studies on the electrophysiology and electrodiagnosis of PPS, and Magnetic Resonance Spectroscopy (MRS) studies of the brain in PPS patients (to determine whether or not there is nerve cell loss in certain areas of the brain). A special thank you is extended to those who participated in the studies to help make them possible.
In summary, a range of activities relevant to post-polio patients is currently being conducted at the MNH and MNI, with important contributions from other departments of McGill University, and institutions outside Montreal.
6. Other Internet Sites
The Lincolnshire Post-Polio Network
Host: The Lincolnshire Post-Polio Network, Registered Charity No. 1064177 (UK), an Information Service for Polio Survivors and Medical Professionals.
About the site: "The core of this site is a library of well over one hundred full text articles on Post-Polio conditions, many from peer reviewed medical journals. The library is catalogued to assist reading order and new articles are added typically every few weeks. A categorised directory of polio resources is also provided with every entry having a description."
This booklet is based on a similar information handbook produced by the West Park Hospital Post-Polio Clinic in Toronto, Ontario. We wish to thank the West Park Hospital Post-Polio Clinic for allowing us to use their handbook. We are indebted to our clinical secretary, Ms. Danielle Lafleur, for her work in our clinic, to Ms. Liliana Cetola for her assistance in the preparation of the manuscript, and to Ms. Josée Lemoignon for translation of the manuscript. The figures are reprinted from: Trojan DA, Cashman NR. Current Trends in Post-Poliomyelitis Syndrome. New York, NY: Milestone Medical Communications, a division of Ruder-Finn, 1996.
This educational booklet was provided with compliments of the Montreal Neurological Hospital Post-Polio Clinic 3801 University Street Montreal, Quebec H3A 2B4 Tel: (514) 398-8911
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