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-year-old 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 Salk 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.

“Most of us were told [polio] wasn’t progressive; it wouldn’t get any worse,” he said. He’s now using a ventilator at night and a scooter to travel even short distances. He said physiatrists, orthopedists and neurologists have helped him and others deal with the effects of post-polio syndrome.

Mr. Wilson now serves on the board of directors of Post-Polio Health International, a nonprofit based in St. Louis. Dr. DeMayo is on the medical advisory board. Both men will be featured speakers at the video conference — titled “Post-Polio Care: Past, Present and Future” — planned for 10 a.m. to 1 p.m. Aug. 26.

Sponsored by the survivors group, the conference will be accessible through a live internet feed at three libraries. In Western Pennsylvania, the Cranberry Public Library, 2525 Rochester Road, will be open for the event, where participants may submit questions. In the east, the library at the Bucks County Intermediate Unit in Doylestown will be the live location, where Dr. DeMayo and Mr. Wilson will speak. People in the center of the state can be part of the conference at Guthrie Memorial Library in Hanover. Registration forms can be found at the network’s website and mailed in, along with a $10 donation, by Aug. 18. Online registration can be made up to Aug. 23. Phone contact for the Cranberry site is 724-283-5814.

Ms. Ferguson said people who are not able to participate can request a DVD of the conference afterward.

Western Pennsylvania coordinator for the survivors network, Joe Randig, 70, of Butler, said the group’s website is building a list of doctors who treat polio patients and a list of brace makers and orthotic providers.

Mr. Randig was hospitalized with polio at age 5, then treated for 20 months at what was then known as the D.T. Watson Home for Crippled Children in Sewickley. He and his family participated in Salk’s vaccine research and he went on to lead a full life, walking with the help of braces and crutches. He married his high school sweetheart and worked in the printing business for about 32 years, retiring in 2000.

In his personal story, titled “My Polio Experience” on the papolionetwork.org site, Mr. Randig said he started having post-polio symptoms around the age of 50, with chronic shoulder and arm discomfort from walking with crutches and fatigue from standing or walking. To create a more accessible home, he and his wife, Linda, bought a ranch house in 2009 and remodeled it. He said he is helped now with custom-molded shoes, a scooter, a home’s stair lift, lift chair and platform lift. His wife’s story, “Loving Joe,” is also on the website.

She writes, “We were fortunate that the challenges of post-polio did not appear until I was older, more mature and had a better idea of what loving and honoring him meant. Now I understand what a great gift I have been given.”

Ms. Ferguson’s story is a little different: She was diagnosed and fitted with braces at 50 years old.

“I had summer grippe [flu-like symptoms] when I was 2,” she said. She recovered, with some weakness in one foot, called drop foot, but her family never talked about it afterward, that it could have been polio. The drop foot got worse, but it wasn’t until midlife that she found the explanation.

“Polio survivors tend to feel very lost and alone,” she said. “We got better; nobody talked about it. We have a tendency to feel alone.”

She said she had excellent care at a New Jersey clinic and was inspired to launch the Pennsylvania network website after attending a meeting of Post-Polio Health International in St. Louis.

“There’s a need for information that is credible ... There’s a lot of bad information on the internet.”

The Pennsylvania network also supports the work of Rotary International (www.rotary.org) in its campaign, with the Bill & Melinda Gates Foundation as partners, to eradicate polio worldwide.

There may be a vaccine, but there is no drug to treat polio survivors, Ms. Ferguson said.

“We may develop muscle twitching from overuse ... but as far as muscle weakness itself, there is no drug. That’s why being in community with one another is so big, it’s such a huge help.”

Jill Daly: jdaly@post-gazette.com, 412-263-1596.

First Published: August 15, 2017, 4:00 a.m.