Polio survivors plan conference in Cranberry
CRANBERRY TWP — A polio survivors group is trying to connect a group of people that has historically been isolated.
The Pennsylvania Polio Survivor's Network is hosting a Web conference “Post-Polio Care: Past, Present and Future” starting at 10 a.m. Aug. 26 at the Cranberry Public Library. Two doctors — William DeMayo and Daniel Wilson — will speak about the history of polio and post-polio care and how to navigate effective medical care for polio survivors and their caregivers.
“And you'll get to meet other polio survivors from the area,” said Joe Randig, a polio survivor.
Randig of Butler is the Western Pennsylvania representative for the online polio survivor's network. The group formed about three years ago in the Philadelphia area to connect polio survivors as they began to experience issues from post-polio syndrome.
The Pennsylvania Polio Survivor's Network organized online to collect information about treatments, answer questions and provide support for other survivors. The Pennsylvania Polio Survivor's Network also sends out a monthly newsletter via mail and email.
Randig said it's estimated that there are more than 1 million polio survivors in the United States.
“It's to let people know we're not alone,” said Tom Grant, a polio survivor from Zelienople. “Polio survivors don't really talk about it much. We just deal with it on our own. We're very stubborn.”
Grant, who also heads up the Zelienople Rotary's districtwide End Polio campaign, was diagnosed when he was 17, but never spent time in a hospital. He began experiencing post-polio syndrome symptoms in 2001 and now uses crutches to get around.
Randig was diagnosed with polio in 1952 when he was just beginning first grade.
“I got up in the middle of the night going to the bathroom, took a few steps and collapsed. I could no longer walk,” Randig said.
He was taken to a hospital in Pittsburgh after he was diagnosed and put in isolation for a month, which was standard routine for anyone diagnosed with polio at the time, Randig said.
Randig was transferred to the D.T. Watson Home in Sewickley to rehabilitate, where he would stay for 22 months before being able to go home.Because he was a resident at the home, Randig said his family had the opportunity to be part of one of Dr. Jonas Salk's clinical trials for the polio vaccine. He said his family would go back each year until about 1961 to have blood samples taken and monitored.Salk developed the polio vaccine in 1955 in Pittsburgh, and the disease was considered to be eradicated in the U.S. by 1979. However, the after-effects for those who had polio were just beginning.Post-polio syndrome can develop anywhere from 15 to 40 years after the initial infection, according to the Centers for Disease Control and Prevention. Symptoms include muscle weakness, fatigue and pain from joint deterioration.Randig is paralyzed from the hip down on the right side and has about 50 percent usage in his left leg, he said. He's used a leg brace and forearm crutches for most of his life, but he too has begun to experience post-polio syndrome symptoms.Randig said some people got polio when they were too young to remember, so they never knew they were positive for the virus until they began to have post-polio symptoms. Others haven't had issues since they were initially infected.At the conference in August, survivors, caregivers and doctors can learn more about the disease and network with each other.Registration for the Post-Polio Care conference is due Aug. 18. For more information, visit www.papolionetwork.org and look under the “Survivor Connections” tab.
