PA Polio Survivors Network Provides Awareness, Information and Hope
Jul 01, 2017 10:25PM
By Hilary Daninhirsch
While polio may not be a disease that gets much press these days because of the success of the polio vaccine, those who survived the disease prior to the drug’s availability know that their problems are not over. Long-term effects can hit two or three decades after recovery; in fact, post-polio syndrome affects up to 90 percent of people who contracted the disease.
Carol Ferguson, 65, is one of these people. She had polio at age two and recovered with only a dropped foot as a reminder. But in her 30s, a bad reaction to anesthesia—directly related to her past history of polio—surfaced after surgery. Now Ferguson, who depends on a leg brace and wheelchair, runs an online advocacy and support group called Pennsylvania Polio Survivors Network.
North Hills Monthly (NHM): What causes polio?
Carol Ferguson (Ferguson): Polio is a virus that we ingest somehow, and it travels through our spinal cord and into our brainstem; it damages neurons that give our muscles strength. The curious thing about people with polio is that we’re all very different. I have symptoms that someone else doesn’t have. I wasn’t nearly as sick in the acute phase of the disease as others who were totally paralyzed, or who couldn’t breathe and had to be in an iron lung.
NHM: How common was the disease in the U.S.?
Ferguson: I’ve heard all kinds of statistics and studied this, but doctors were not required to report any outbreak of polio cases until 1954-55. There were horrifying epidemics from the end of the 1800s through 1954; the largest epidemic in the U.S. was in 1916, but in the early ‘50s, summer after summer, tens of thousands of children got the disease. There was so much fear, which is part of the reason we are so focused on letting survivors know that we’re here, that there is help, and that credible information is available.
NHM: Is it possible to recover fully with no long-term effects?
Ferguson: Polio is a disease that attacks not once but twice. Everybody thinks it is done and over, but 20-plus years later, it starts to rear its ugly head again. It’s called Post-Polio Syndrome, and it was not recognized until the mid-1980s. In my personal case, Post-Polio Syndrome is far more difficult to deal with than the acute phase of the disease.
NHM: What was your experience with polio?
Ferguson: At age 2, I had a high fever, recovered on my own and was left with a drop foot. When my parents took me to a specialist, he said it was clearly a ‘polio’ foot. The word polio was never mentioned in our home again. Sadly, the social norms of the day allowed parents to blame themselves if their child had polio. Visible remnants of the disease were a constant reminder that it had been in their home. If the neighbors knew, none of their children would be allowed to play with us. That is the social piece of polio—shame and fear.
My father never spoke about it. My mother never mentioned it until two years before her death at age 93. We were taught to leave it alone, forget about it; not talk about it. That is why our network encourages all hospitals and physicians to start including it on their intake forms again. If they don't ask, we typically won't bring it up. The reality that someone is a polio survivor can significantly change their care.
NHM: Tell me about the PA Polio Network.
Ferguson: One of the things that I learned while attending an international conference in St. Louis in 2014 is that Pennsylvania was sorely behind other states with post-polio information and care. I had lived that myself, personally, and my heart was breaking for survivors who were not as blessed as I had been to get really good care. On the flight home, I knew we would start something for polio survivors in the state of Pennsylvania; it just had to happen.
Our mission is to be of service, providing information to polio survivors, post-polio support groups, survivors’ families and their caregivers. Our ongoing goal of polio awareness has a dual purpose; the first being to draw attention to the estimated 1 million-plus polio survivors in the United States—the majority of whom are realizing the disabling effects of Post-Polio Syndrome.
The second and equally important goal is to draw attention to the importance of being immunized against this crippling disease.
NHM: What treatments exist for post-polio syndrome?
Ferguson: What helps us the most is totally relearning to relive our lives through rehabilitative medicine and physical therapy. We’re the opposite of everyone else—people say, ‘If you want to strengthen your muscles, you exercise,’ but in order to slow down the progress of Post-Polio Syndrome, you have to slow down any exercising. We learn to ‘conserve’ the strength that we have in order to preserve it.
NHM: How can people find out more?
Ferguson: The first teleconference in the history of our state with polio survivors will be held in Cranberry on August 26. The majority of polio survivors are significantly disabled, but through the beauty of teleconferencing, we can meet. Dr. William DeMayo, a rehabilitation physician, and Dr. Daniel Wilson, a leading polio historian and professor, will be able to answer questions live. We are really excited about that. It is the first time to our knowledge that it’s ever been done in the post-polio world.
www.papolionetwork.org or call 215-858-4643.
Decades before Pittsburgh achieved world-renowned status as a center of innovation and health care, there was Dr. Jonas Salk. In 1955, Dr. Salk would forever change the course of medical history for an untold number of children with the development of the polio vaccine.
At the time, Dr. Salk was the head of the University of Pittsburgh’s Virus Research Laboratory. With funding from an organization now known as the March of Dimes, Dr. Salk worked on developing a vaccine. After testing it on himself, along with a group of people known as the Polio Pioneers, it was deemed to be safe and effective.
The incidence of paralytic poliomyelitis dropped from 45,000 cases in 1955 to 910 in 1962. Today, only three countries in the world—Afghanistan, Nigeria and Pakistan—have not contained transmission of the polio virus.
From 1947-53, Dr. Salk lived in Wexford; in 2013, his son and grandson came to the area to dedicate a plaque at the Burger King in Pine, commemorating the site of his former family home.
Though he left Pittsburgh to establish the Salk Institute in California, the legacy of Dr. Salk and his medical team remains one of the most important contributions to modern medicine.