History of polio

Poliomyelitis is a disease caused by a virus that attacks nerves that control motor function. Polio (infantile paralysis) has nearly been eradicated from nearly every country in the world since the approval of the Salk (1955) and Sabin (1962) vaccines.

In 2013, only three countries (Afghanistan, Nigeria, and Pakistan) remained polio-endemic, down from more than 125 in 1988.

The World Health Organization (WHO) estimates that 12 million people worldwide live with some degree of disability caused by poliomyelitis.

The National Center for Health Statistics estimates about one million polio survivors in the United States, with almost half reporting paralysis resulting in some form of impairment. The last major outbreaks of polio in the United States were in the early 1950s.

What is post-polio syndrome?

For years, most polio survivors lived active lives, their memory of polio mainly forgotten, their health status stable. But by the late 1970s, survivors who were 20 or more years past their original diagnosis began noting new problems, including fatigue, pain, breathing or swallowing problems, and additional weakness.

Medical professionals called this 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 it may cause difficulty with concentration and memory. Others experience muscle weakness that increases with exercise and improves with rest.

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

Post-polio syndrome appears to be related to physical overuse and, perhaps, nerve stress. When the poliovirus destroyed or injured motor neurons, muscle fibers were orphaned and paralysis resulted.

Polio survivors who regained movement did so because non-affected neighboring nerve cells began to “sprout” and reconnect to what might be considered orphaned muscles.

Survivors who have lived for years with this restructured neuromuscular system are now experiencing the consequences including overworked surviving nerve cells, muscles, and joints, compounded by the effects of growing older. There is no conclusive evidence to support the idea that post-polio syndrome is a reinfection of the poliovirus.

Managing PPS

Polio survivors are urged to take care of their health in all the usual ways – by seeking periodic medical attention, being nutrition-wise, avoiding excessive weight gain, and by stopping smoking or overindulging in alcohol.

Survivors are advised to listen to their body's warning signals, avoid activities that cause pain, prevent overuse of muscles, and conserve energy by avoiding tasks that are nonessential, and by using adaptive equipment when needed.

Post-polio syndrome 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. Energy-conserving assistive devices such as canes, crutches, walkers, wheelchairs, or electric scooters may be necessary for some people.

Living with post-polio syndrome often means adjusting to new disabilities; for some, reliving childhood experiences of coming to terms with polio can be difficult. For example, moving from a manual to a power chair can be tough.

Fortunately, PPS is gaining increasing attention in the medical community, and there are many – professionals who understand it 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 assuring survivors that they are not alone in their struggle.

Franklin D. Roosevelt, polio survivor

Franklin D. Roosevelt, seldom seen as a polio survivor, with Ruthie Bye and Fala, 1941

Franklin D. Roosevelt, seldom seen as a polio survivor, with Ruthie Bye and Fala, 1941

Resources

If you are looking for more information on post-polio syndrome or have a specific question, our information specialists are available business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9am to 5pm ET.

Additionally, the Reeve Foundation maintains a fact sheet on PPS with resources from trusted Reeve Foundation sources. Check out our repository of fact sheets on hundreds of topics ranging from state resources to secondary complications of paralysis.

We encourage you to also reach out to post-polio syndrome support groups and organizations, including:

  • Post-Polio Health International offers information for polio survivors and promotes networking among the post-polio community. PPHI publishes numerous resources, including the quarterly Polio Network News, the annual Post-Polio Directory, and The Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors. PPHI is the evolution of the GINI organization, founded as a mimeograph newsletter by Gini Laurie in St. Louis 50 years ago. 314-534-0475.
  • Post-Polio Institute is the home of Richard Bruno, clinical psychologist specializing in fatigue, pain, and stress – as well as PPS.

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

This project was supported, in part by grant number 90PR3002, 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.