Report targets best practices for postpolio syndrome

The difficult-to-diagnose ailment has surfaced as a harsh reminder of the polio epidemic that swept the nation in the 1950s.

By Susan J. Landers, amednews staff. June 25, 2001.

Washington -- Patients who survived polio many years ago may now be arriving in physicians' offices complaining of new progressive muscle weakness, fatigue and pain in muscles and joints.

Postpolio syndrome is a little understood, secondary illness now confronting thousands of polio survivors and their physicians.

A checklist
Links

In a new report, the March of Dimes estimates that up to 250,000 polio survivors in the United States face the threat of new disabilities 15 to 40 years after contracting their original illness.

The disease is difficult to diagnose, in part because there are no definitive tests for the condition. As a result, the report finds that many physicians fail to recognize the illness. To correct this situation, the March of Dimes has identified best practices in diagnosis and care in a report specifically targeted to doctors.

"The causes of PPS are not thoroughly understood," said Lewis P. Rowland, MD, professor of neurology at Columbia University College of Physicians and Surgeons in New York City.

"In the initial acute polio episode, patients can lose up to 60% or 70% of their motor nerve cells," said Dr. Rowland, who also heads the March of Dimes' Steering Committee on Post-Polio Syndrome.

Surviving nerve cells attach themselves to muscle fibers that still work, and a patient's motor function is restored.

However, 15 to 40 years later, "the ability to maintain function seems to be lost," Dr. Rowland said. "But no one is certain why this happens."

One theory holds that the motor nerves that sprouted new connections years earlier to make up for other nerves killed by polio simply wear out prematurely under the added load.

The normal aging process and the overuse or disuse of muscles may be contributing factors in the development of PPS, according to the report.

PPS first came to the widespread attention of the nation's medical community during the 1980s -- three decades after the worst polio epidemic swept the country. More than 50,000 people were affected in 1952 alone.

Among them was Lauro S. Halstead, MD, director of the postpolio program at the National Rehabilitation Hospital in Washington, D.C. Dr. Halstead had polio when he was a college student in the 1950s. The disease temporarily paralyzed his right arm, and he needed an iron lung to help him breathe.

"I made a good recovery, finished college and medical school," Dr. Halstead said. "But I began experiencing new weakness in the early 1980s. Doctors had no idea what I had, with some suggesting multiple sclerosis and others, Lou Gehrig's disease [amyotrophic lateral sclerosis]."

A physician who was studying postpolio syndrome finally made the diagnosis, Dr. Halstead said.

Disease management

Management of the illness requires a multifaceted and interdisciplinary approach that focuses on the symptoms, according to the report.

Muscle weakness can be managed with a judicious exercise program or the use of braces, crutches or wheelchairs. Excessive fatigue may respond to lifestyle changes, regular rest periods or medications such as antihistamines, valerian and melatonin to improve sleep.

Postpolio muscle pain may be helped by first reducing activities and then introducing a program of individually designed exercises. Treatment could include physical therapy, nonsteroidal anti-inflammatory drugs or orthoses.

Treatment for joint and soft tissue pain also may include physical therapy and strengthening exercises, splinting for carpal tunnel syndrome or shoe lifts and back supports for patients with low back pain.

Respiratory muscle weakness also may be a problem for patients who required assistance with breathing at the time of their initial infection with polio. In PPS, breathing can be assisted with ventilators or supplemental oxygen.

Difficulty in swallowing, caused by weakness of pharyngeal or laryngeal muscles, may require restricting patients' diets to pureed foods and thickened liquids.

In addition to the report issued for physicians, the March of Dimes has released a second report on PPS for patients.

ADDITIONAL INFORMATION:

A checklist

The March of Dimes convened an international group of experts on postpolio syndrome one year ago. The result is a new guide for physicians on diagnosing and caring for patients with the syndrome.
The committee included the following criteria for making a diagnosis:

Evidence of prior paralytic poliomyelitis with evidence of motor neuron loss.
Partial or complete functional recovery from polio followed by an interval of usually 15 years or more of stable neurologic function.
Gradual or sudden onset of progressive and persistent new muscle weakness or abnormal muscle fatigability.
Symptoms persist for at least one year.
Other neurologic, medical and orthopedic problems are eliminated as the cause of the symptoms.

Weblink

March of Dimes report, "Post-Polio Syndrome: Identifying Best Practices in Diagnosis and Care," in PDF format (http://www.modimes.org/Programs2/International/)

National Rehabilitation Hospital Post-Polio Program (http://www.nrhrehab.org/PostPolio.htm)

Post-Polio Syndrome information from the National Institute of Neurological Disorders and Stroke (http://ninds.nih.gov/health_and_medical/disorders/post_polio_short.htm)