Polio was one of the most feared diseases in the first half of the 20th century. In the 1940s, more than 35,000 people, mostly children, were crippled by polio each year in the United States.
This year marks the 60th anniversary of Jonas Salk’s polio vaccine, and the U.S. has been declared polio-free for more than 30 years. Some people forget that thousands of children were isolated in polio hospitals because of the disease, which attacks the central nervous system and causes muscle weakness and partial or complete paralysis in some.
Children were affected the most, often ending up in wheelchairs, leg braces and support shoes. Many polio victims recovered to live active lives.
But for the survivors of polio, the disease is like a shadow they can never get rid of. Now, as they are in their retirement years, many of the 1 million people in the last generation of polio victims are facing post-polio syndrome, or sequelae, that makes them relive the years they’ve been trying to forget.
When he was 4, Jim McKay contracted polio. He lived for almost three years at the Betty Bacharach Home for Crippled Children in Longport, now the Bacharach Institute for Rehabilitation in Galloway Township, before he recovered.
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As an adult, McKay, of Estell Manor, loved to travel. He has been to many places around the world and recently returned from safaris in South Africa. At home, he voluntarily maintains weather records as a retired National Weather Service meteorologist.
But his body isn’t what it used to be, he said. He walks with crutches or drives a golf cart around his property. He is almost at the point where he may not be able to lift his feet up steps. McKay, 65, knew this was coming, because as a polio survivor, later-in-life complications were to be expected.
“In the mid ’80s, I started to get some weakness again,” he said. “My uncle had polio and was in a wheelchair, paralyzed from the waist down. He tried to get stronger but found out the more he exercised, the weaker he got. He’s the one who told me about post-polio.”
PPS has been found in polio survivors decades after the epidemic. Symptoms that include overwhelming fatigue, muscle weakness, muscle and joint pain, sleep disorders and heightened sensitivity to anesthesia are familiar to the survivors in South Jersey, now in their 60s, 70s and 80s.
“Some doctors will say, ‘I don’t believe in that,’ like it’s a religious experience,” Dr. Richard Bruno said. “It’s in the New England Journal of Medicine. There’s no question that this is a real phenomenon.”
Bruno is the chairman of the International Post-Polio Task Force and director of the Post-Polio Institute and International Centre for Post-Polio Education. He has been researching PPS and treating patients for more than 30 years.
Bruno started his research in the 1980s when a patient came to him distraught over the idea that he was dying of ALS. But he had been misdiagnosed, as many polio survivors still are.
“Everyone forgot about polio. This blindsided them,” he said. “It came as a surprise to survivors. People now will say, ‘I don’t understand why my good leg or arm is weaker.’ Over time, the better limb has been doing the workload for the weaker, polio-affected limb.”
Treating PPS is easy, Bruno said. Maintaining a diet with less sugar, carefully balancing exercise with day-to-day activities and getting some physical therapy can help a survivor maintain better energy levels throughout the day.
The hard part is getting physicians and survivors to recognize the symptoms and accept the diagnosis. Some patients react angrily — Bruno has had patients tell him to “go to hell” — because it can mean a reintroduction to crutches, leg braces and painful memories.
“I didn’t know it was going to come back,” said Lina Louie, of Lawrence Township, who contracted polio as an infant in Italy. “When I started having problems again, I didn’t want to know. I was in denial.”
McKay and Louie meet once a month in Mays Landing with other survivors in a post-polio support group. Members talk about health problems they’re experiencing. Their meetings become increasingly important as their numbers decline over time.
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“Everyone reacts differently,” said Tim Hendley, of Port Republic. “I didn’t go to any meetings for a long time. I wanted to handle it on my own, but when you realize there are other people to talk about it, it’s a good form of therapy.”
After recovering from polio as a child, Bob Page, of Millville, played every sport he could in high school, such as baseball, basketball and football. He said he was embarrassed when doctors put him back in a leg brace and equipped him with a cane when he later started to experience PPS symptoms.
When she was a girl, Marge Disbrow, of Mays Landing, was one of two children in her neighborhood to get polio. She recovered and went on with her life. But now, confined to a wheelchair and using canes, she is once again seeking medical help for polio symptoms.
Disbrow sends newsletters to physicians and other support-group members in an effort to keep everyone updated on PPS discoveries and legislation.
In 2005, the New Jersey Legislature approved a Post Polio Sequelae Awareness Program to support the estimated 50,000 survivors in the state. The state produced wallet-sized cards that polio survivors can carry. The cards explain the disease and warn of the possible side effects of anesthesia, including difficulty breathing and swallowing, and hypersensitivity to pain and cold.
Many polio survivors are unaware that symptoms such as restless leg syndrome may be an indication of PPS, or they are in denial. The public and some doctors also seem to be in denial, Bruno said, grossly underestimating the number of polio survivors who may be affected by PPS.
But PPS can be treated, the doctor said.
“The quality of life and ability to function, from a physical point, is easy to improve or retain,” he said. “The worst-case scenario for survivors is they get treatment and don’t get worse. The best is they get better.”