Post-Polio Syndrome

What is post-polio syndrome?

Post-polio syndrome (PPS) is a condition that affects polio survivors 10 to 40 years after they had polio. PPS causes loss of muscle function, tiredness, weakness, and trouble swallowing. About 25% of polio survivors develop PPS.

Polio was a terrible viral disease in the 1900s up through the 1950s. Since then polio vaccination has almost eliminated polio worldwide. The last US outbreak was in 1954. However, many people who survived the disease and are still alive today are suffering the aftereffects of polio and disability--a medical problem now recognized as post-polio syndrome.

How does it occur?

The cause of PPS is not completely understood. The original poliovirus infection attacked nerve cells responsible for muscle movement, hurting or even killing the cells. Surviving nerve cells grew extra branches. These branches attached to muscles that had lost their original nerve supply during the polio infection. After the new nerves attached, the muscles were able to work again. Some researchers think that post-polio syndrome develops because these extra nerve branches weaken over time. The muscle then loses its ability to move properly.

What are the symptoms?

Symptoms of PPS are:

• tiredness
• increasing muscle weakness
• trouble swallowing
• wasting away of muscles (atrophy)
• joint pain
• skeletal problems, such as scoliosis (curvature of the spine).

How is it diagnosed?

Your healthcare provider will test how well your muscles work, checking for a pattern of weakness that is typical of PPS. You may also have other tests such as:

• imaging tests, or scans, such as MRI, CT, and PET
• tests of samples of muscle tissue (biopsies)
• tests of spinal fluid.

How is it treated?

No treatments have been found yet that can cure or prevent PPS. Many unproven treatments are being tried in the hope that they will have some effect. Small studies suggest that some drugs don't work or have very little effect. Some case studies report benefits of the medicine selegiline in 1 or 2 people, but larger studies have not been reported. Other treatments show small positive effects but not much overall benefit, such as immunoglobulin given intravenously.

Electronic nerve stimulation devices (TENS) may help relieve pain. Heavy use of muscles and massage may have been harmful for you during the active poliovirus infection, but it may be helpful for post-polio syndrome.

If you used a ventilator during your original polio infection, you may need to use a ventilator again to help you breathe.

The future in PPS treatment may focus on helping the nerves grow new branches.

How long will the effects last?

PPS worsens very slowly. There may be long periods of time when it does not worsen. Unless you have severe lung problems, PPS is not usually life threatening.

How can I take care of myself?

• Manage new weakness with strengthening, stretching, and aerobic exercise. Avoid exercise that makes your joints hurt. Stop exercising if your muscles start hurting or get tired.
• Don't let yourself get too tired. Have regular rest periods or daytime naps. Early afternoon can be a good time to take a nap.
• Take pain relievers such as acetaminophen or ibuprofen.
• Put ice or heat on your muscles to help relieve pain.
• Consider using devices that can help you be mobile, such as canes, crutches, wheelchairs, and motorized scooters.
• Manage swallowing problems by:
  • eating smaller and more frequent meals during the day
  • avoiding eating when you are tired
  • turning your head to one side or tucking down your chin while swallowing.

For more information, contact:

International Polio Network/Gazette International
Phone: 1-314-534-0475
Web site: http://www.post-polio.org

The following journal article provides a summary of current knowledge and recommendations for treatment of PPS: The guidelines developed by the European Federation of Neurological Societies emphasize regular exercise and getting helpful assistance from braces or other adaptive devices if you need them: Farbu E, NE Gilhus, MP Barnes, et al. EFNS guideline on diagnosis and management of post-polio syndrome. Report of an EFNS task force. Eur J Neurol 13 (2006): 795-801.