This introduction to information about the late effects of polio, is available as an attractive printed, 4-part brochure. First copy is free; 100 brochures are available for $40; 50 brochures for $20; 25 brochures for $10. Postage not included. Contact firstname.lastname@example.org.
Polio (poliomyelitis or infantile paralysis) triggers memories of closed swimming pools and March of Dimes canisters, of Franklin D. Roosevelt and Warm Springs, of childhood friends who wore long leg braces, and of Drs. Jonas Salk and Albert Sabin.
Polio is one of the recommended immunizations on a list prepared by the US Centers for Disease Control and Prevention and by many health ministries around the world.
Polio is caused by a virus and is still endemic in a handful of countries in Asia and Africa.
In the late 1970s, survivors of polio reported two problems to Gini Laurie, founder of the journal Rehabilitation Gazette, an earlier name for Post-Polio Health International. Survivors of the large epidemics of the late ’40s and early ’50s were “tiring more easily.” Because they had been successfully rehabilitated 35 years earlier, they couldn’t find health professionals who remembered polio or understood its long-term consequences.
Laurie jumped into action and looked for the dedicated physicians who ran the respiratory polio centers in the ’50s. Many had moved on to other positions; many had retired. Her relentless networking produced a conference in Chicago in 1981. The meeting gathered 120+ polio survivors, health professionals and providers to help answer the question, “What Ever Happened to the Polio Patient?”
Today, Post-Polio Health International continues its networking among the post-polio community through its comprehensive websites www.post-polio.org and www.ventusers.org newsletters, conferences and its Research Fund.
This pamphlet is written for three audiences: polio survivors, their families and friends, and health professionals. The sections can be separated and passed along to others.
Do you know that there are 12-20 million other individuals who had polio living in the world today? Although some people think "polio does not exist anymore," even now the poliovirus is causing poliomyelitis in under-vaccinated children. You may live in a country that is still trying to eradicate the poliovirus and where there are barriers to education, employment and healthcare for survivors. Or, you may live where cases of acute polio no longer occur, but where you have to challenge the status quo that excludes people with disabilities from full participation in life. In either case, for you, polio still exists.
There are long-term physical consequences to having had poliomyelitis. New symptoms recognized by the medical community that may relate to prior polio include:
- unaccustomed fatigue – either rapid muscle tiring or feeling of total body exhaustion;
- new weakness in muscles, both those originally affected and those seemingly unaffected;
- pain in muscles and/or joints;
- sleeping problems; breathing or swallowing problems; and/or decreased ability to tolerate cold temperatures.
Any combination of the symptoms may affect your ability to conduct customary daily activities such as climbing stairs, walking, lifting, etc.
Obtain a complete general medical evaluation from your primary care physician. Any medical problems found in the evaluation should be treated and monitored.
If your symptoms persist, seek a neuromuscular examination from a specialist in post-polio problems, typically a physical medicine and rehabilitation specialist (physiatrist) or a neurologist. The purpose of this examination is to determine what the problem is and to establish a baseline from which to judge future changes, to evaluate and update your mobility aids and/or your ventilatory equipment, and to develop an individualized management plan.
Do not attempt to diagnose yourself. Post-polio syndrome is a diagnosis of exclusion and it is important to rule out (or treat) conditions with similar symptoms that may be causing distress.
Although research has not yet identified a medication that stops or delays the weakening of muscles, the symptoms can be managed.
Seek medical advice and use recommended mobility aids and ventilatory equipment.
Listen to your body and follow common sense guidelines that include avoiding activities that cause pain and/or fatigue that lasts more than ten minutes.
Pace yourself in your daily activities, routinely stopping to rest for 15 to 30 minutes several times a day.
Consider joining a support group that espouses self-help and encourages group participation and positive action, or consider seeking individual and/or family counseling to assist in making needed lifestyle changes.
Maintaining health is essential for those with a compromised neuromuscular system. Heed general advice about eating well, getting the proper amount of sleep, avoiding unhealthy habits such as smoking and overeating, and exercising appropriately. Many symptoms result from the overuse and misuse of muscles and joints. Carefully consider which muscles to exercise and how often.
Educate yourself and your loved ones about post-polio problems and treatment approaches. Cultivate a team of traditional and, when appropriate, complementary health professionals, collaborating with them as you strive for health and independence.