Post-Polio Resources
What It Is
Post-polio syndrome deals a cruel second blow to patients decades after the acute effects of infection with the polio virus. About half of the estimated 1 million U.S. polio survivors report new weakness, fatigue and pain, intolerance of heat or cold, trouble breathing and sleep disturbances. Although doctors don’t understand the cause, many attribute the syndrome to overuse of muscles that compensated for those damaged and atrophied by the polio virus. Symptoms are most common in the lower extremities, but they can occur anywhere.
What Patients Can Do
Post-polio patients should continue with exercise and activities that do not cause pain, fatigue or weakness; some report relief from massage. They should make lifestyle adjustments to avoid stresses such as heavy lifting, becoming overly fatigued at work and gaining weight excessively.
What Doctors Can Do
The syndrome isn’t well understood or easy to diagnose. A medical evaluation includes reviewing the patient’s polio history and ruling out other illnesses, as well as gait analysis and sleep analysis to check for nighttime respiratory problems. Braces, orthotics, canes or other devices can add support or enhance muscle function. Medication can help with pain and fatigue.
Resources
The International Polio Network has a World Wide Web site with current listings of clinics and health professionals by state, as well as background on the disorder, at https://www.post-polio.org and can be telephoned through the organization that manages the site, Gazette International Networking Institute in St. Louis, at (314) 534-0475.
A Sampling of Support Groups:
* The Post-Polio Support Group of Orange County, Priscilla Hiers, (714) 968-1675 or prisofoc@aol.com.
* The Rancho Los Amigos Post-Polio Support Group, Patricia O’Neill, (562) 420-3227.
* The UCLA/Westside Post-Polio Support Group, Barbara MacKinnon, (310) 208-6825.
* Antelope Valley Polio Survivors, Alexes Hourigan, (661) 948-7976 or alexesh@yahoo.com.
* Hemet Area Polio Survivors and the Easter Seals Riverside Post-Polio Support Group, Rick Van Der Linden, (909) 929-8208.
* East Ventura County (Simi Valley) Post-Polio Support Group, Barbara Sullivan, (805) 584-6361.
