POLIO’S PAINFUL AFTERMATH

Group reaches out with information and support for survivors as they age

Thirty or forty years after surviving polio as a child, people can find themselves with a new set of disabling symptoms, such as muscle weakness and pain, trouble breathing and a terrible intolerance to cold weather.

Called post-polio syndrome, it affects many people in the U.S. who got sick as children in the late ’40s and early ’50s during polio outbreaks that disabled an average of more than 35,000 people each year, according to the Centers for Disease Control and Prevention.

“Polio is a disease that attacks you not once, but twice,” said polio survivor Carol Ferguson, 65, of New Hope, Bucks County, founder of the 3-yearold Pennsylvania Polio Survivors Network, an online resource at www.papolionetwork.org. It’s dedicated to providing information to polio survivors, post-polio support groups, survivors’ families and their caregivers. The network is sponsoring an interactive video conference Aug. 26, at three library locations across the state.

“When we were young, we got sick,” she said. “Then we recovered, the virus is gone. Then 20 years later, things start happening. You ask, ‘What’s happening to me? My leg’s getting weaker.’ It slowly creeps up on us, then we’re in trouble.”

Ms. Ferguson said the network also distributes 1,200 newsletters a month, providing only “credible information” and access to advice from experienced experts such as William DeMayo, a Johnstown doctor who specializes in physical medicine and rehabilitation, and has been treating polio survivors for more than 20 years.

The network encourages members to share their personal stories. In addition to health care information, the website and newsletter share polio history, including contributions from historian Daniel Wilson of Muhlenberg College in Allentown, author of “Living With Polio: The Epidemic and Its Survivors” (2005), “Polio Voices: An Oral History from the American Polio Epidemics and Worldwide Eradication” (2007) with Julie K. Silver, and “Biographies of Disease: Polio” (2009).

Mr. Wilson said polio has been the focus of his research for 27 years. He had polio in 1955 when he was 5 — just after Jonas Sal developed a vaccine in Pittsburgh to prevent polio. Mr. Wilson said he was left with weakness in one leg and developed scoliosis, but he thought that would be all he would have to deal with. When he started to have new weakness and breathing problems in his 30s, it was unexpected.

Darrell Sapp/Post-Gazette Joe Randig, a 70-year-old retired printer, works on the flowers at his home in Butler, Pa. He contracted polio at age 5.

Young Joe Randig, with his mother, Pearl Randig, at the D.T. Watson Home in October 1952. “This would have been my first visit with my family after being in isolation for a month in Municipal Hospital [now Jonas Salk Hall at the University of...