Polio’s Legacy Lingers

By Linda Donahue

Polio once struck fear in the hearts of families much like AIDS does today. Americans no longer get polio, but its aftermath is still wreaking havoc.

Polio was a devastating virus that frequently attacked infants and children, resulting in paralysis and sometimes death of its young victims. The polio virus travels down the spinal cord where it invades the nerve cells (motor neurons). When it does, muscles connected to the damaged or destroyed nerve cells can no longer function well, resulting in weakness or paralysis of the limbs.

Many polio survivors grew up coping with leg braces, crutches, wheelchairs, and even iron lungs. They adjusted to their situation and many became profoundly successful in life. After the polio vaccine in 1955, this dreaded disease was just about eradicated. But polio survivors who made such effective adaptations and coped with their disability so well are now facing a troubling new series of losses and setbacks.

Post-Polio Syndrome, or PPS, is the term used to indicate a series of new symptoms that people who had polio are experiencing as they grow older. These symptoms generally occur two to four decades after the onset of the initial polio infection. Indications include new weakness, pain, breathing and swallowing difficulties, cold intolerance, sleep disorders, muscle fasiculations, gastrointestinal problems, muscle fatigue, and central fatigue. Symptoms can occur both in previously unaffected muscles as well as in muscles that were weakened at onset. In addition, the patient often experiences weakness of the breathing muscles, namely in the diaphragm and ribcage.

Complications of post-polio syndrome include arthritis, nerve entrapments, scoliosis, neuropathies, osteoporosis, and sometimes further muscle atrophy. Post-polio syndrome is a major chronic illness and one which poses unique problems to its survivors and their health care professionals.

The diagnosis of PPS is reached through physical examination, detailed history, and neurological examinations such as magnetic resonance imaging (MRI), neuroimaging, electrophysiological studies, and manual muscle testing. There must be evidence of prior paralytic polio via EMG, an appropriate history, or characteristic residual atrophy. The physician must eliminate other possible causes that might mimic the new symptoms. Those who were most affected by the virus at the initial onset and, ironically, who made the best recovery, seem to have the most severe PPS symptoms later in life.

The medical literature reflects general agreement that PPS is caused by failure at the neuromuscular junction. Human nerve cells die off with age. Persons who had polio lived with an already reduced number of nerve cells and overworked muscles for decades. So when even more nerve cells die off with age, the polio survivor experiences dramatic new weakness, pain, and fatigue.

There is also known to be an impairment of the production of various hormones and neurotransmitters, but the cause of that reduction is not known. Some theories say this impairment is due to damage to the central nervous system done by the polio virus.

There is no cure for post-polio syndrome. The condition is managed by bracing, orthotics, or other aids which extend, amplify, or substitute for muscles, and by lifestyle modifications such as pacing (thought of as energy budgeting). Many PPSers must make the transition to adaptive equipment such as wheelchairs and scooters.

The familiar exercise adage “use it or lose it” is bad advice for people with PPS. The polio survivor is told to adopt the motto “conserve to preserve.” Vigorous exercise may have a deleterious effect by causing more nerve cells to die off and by forcing these muscles beyond their metabolic capacity and producing injury. Fortunately, PPS is not usually life-threatening and is generally a slowly progressing condition that is marked by long periods of stability.

Polio survivors in Connecticut obtain treatment through physiatrists, neurologists, pulmonologists, orthopedists, and physical therapists. Gaylord Hospital in Wallingford has a post-polio clinic headed by Dr Michael Collins. Some PPSers are treated by Julie K. Silver, MD, in Framingham, Mass.; others consult with Augusta S. Alba, MD, in Roosevelt Island, N.Y.

No, polio has not totally gone away. Its legacy lingers in the form of post-polio syndrome, causing much pain and suffering still. But polio survivors across the state have not lost hope. They benefit from an active support group in Connecticut called Polio Outreach. This organization provides support, encouragement, education, and social interaction. Many expert speakers enlighten meetings. All survivors and their supporters are welcome to attend meetings of Polio Outreach of Connecticut. For further details, contact Linda Donahue, president, by phone at 203-264-1075 or by email at LinOnnLine@aol.com.