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Spinal Cord Injury Paralysis Resource Center

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Post-Polio Syndrome

Poliomyelitis (infantile paralysis) has been eradicated from nearly every country in the world since the approval for use of the Salk (1955) and Sabin (1962) vaccines.

The World Health Organization (WHO) estimates there are 12 million people worldwide with some degree of disability caused by poliomyelitis. The National Center for Health Statistics estimates there are one million polio survivors in the United States. About 433,000 of them reported paralysis resulting in some form of impairment.

For years most of these polio survivors lived active lives, their memory of polio long forgotten, their health status stable. By the late 1970s, polio survivors were noting new problems of fatigue, pain, breathing or swallowing problems, and additional weakness – medical professionals called this the "post-polio syndrome (PPS)."

Some people experience PPS-related fatigue as a flu-like exhaustion that worsens as the day progresses. This type of fatigue can also increase during physical activity, and may cause difficulty with concentration and memory. Others experience muscle fatigue, a form of muscle weakness that increases with exercise and improves with rest.

Current research indicates that the length of time one has lived with the residuals of polio is as much of a risk factor as chronological age. It also appears that individuals who experienced the most severe original paralysis with the greatest functional recovery are having more problems now than others with less severe original involvement.

The current consensus of opinion explaining post-polio symptoms focuses on the nerve cells and their corresponding muscle fibers. When the poliovirus destroyed or injured motor neurons, muscle fibers were orphaned and paralysis resulted. Polio survivors who regained movement did so because nerve cells recovered to a certain extent. Further recovery is attributed to the ability of non-affected neighboring nerve cells to "sprout" and reconnect to the orphaned muscles.

Survivors living for years with this restructured neuromuscular system are now experiencing the consequences – overworked surviving nerve cells and overworked muscles and joints, compounded by the effects of growing older. While the search for a viral cause continues, there is no conclusive evidence to support the concept that post-polio syndrome is a reinfection of the poliovirus.

Polio survivors take care of their health by seeking periodic medical attention, by being nutrition-wise, avoiding excessive weight gain, and by stopping smoking or over-indulging in alcohol.

Survivors should listen to their bodies. Avoid activities that cause pain – this is a warning signal. Avoid un-restrained use of painkillers, especially narcotics. Do not overuse muscles but do continue activity that does not worsen the symptoms. In particular, do not overexercise or continue to exercise through pain. Avoid activity that causes fatigue lasting more than ten minutes. Conserve energy be avoiding tasks that are nonessential.

PPS is not typically a life-threatening condition, but it may cause significant discomfort and disability. The most common disability caused by PPS is deterioration of mobility. People with PPS may also experience difficulties performing daily activities such as cooking, cleaning, shopping, and driving. Assistive devices such as canes, crutches, walkers, wheelchairs, or electric scooters may be necessary for some people. If symptoms are extremely severe, these individuals may be required to change occupations or stop working altogether.

Many individuals have difficulties adjusting to new disabilities. For some with PPS, reliving their childhood experiences with polio can be a traumatic and even terrifying experience. Fortunately, PPS is gaining increasing attention in the medical community, and there is a growing number of health care professionals who understand PPS and can provide appropriate medical and psychological help. In addition, there are PPS support groups, newsletters, and educational networks that provide up-to-date information about PPS while offering individuals the knowledge that they are not alone in their struggle.

 

Sources: Post-Polio Health International, Montreal Neurological Hospital Post-Polio Clinic

A Reeve Foundation Fact Sheet on Polio and Post-Polio (PDF)

Montreal Neurological Hospital Post-Polio ClinicOffers an online patient handbook on post-polio symptoms and management.

March of Dimes Birth Defects FoundationOffers information about the four major problems that threaten the health of America's babies: birth defects, infant mortality, low birthweight, and lack of prenatal care. Good resources and information on Spina Bifida.

National Institute of Neurological Disorders and StrokeProvides research overviews for all diseases and conditions related to paralysis.

Post-Polio Health InternationalOffers information for polio survivors and promotes networking among the post-polio community. Publishes the quarterly Post-Polio Health, the annual Post-Polio Directory, and The Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors.

The Polio Quebec AssociationThe Polio Quebec Association represents the interests of people who have had polio.

Spina Bifida Association of America (SBAA)Locate local SBAA Chapters by using the interactive map on the SBAA's Group Members (Chapters) web page.

Paralysis Resource Center The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm ET. You may also schedule a call or send a message online.

Reeve Foundation Online Paralysis Community Connecting people living with paralysis, families, friends and caregivers so we can share support, experience, knowledge, and hope.

Quality of Life Grants DatabaseFind resources within the PRC Quality of Life Grants Database. Search by Zip Code, State or an Entire Category.

Library Books and VideosFind resources within the PRC library catalog.

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The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm Eastern U.S. Time. International callers use 973-467-8270. You may also schedule a call or send a message online.

This project was supported, in part by grant number 90PR3001, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.