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Post Polio Sequelae: A Conversation with Survivors

A massive epidemic of polio swept across the United States in the late 1940s and early 1950s. Fifty-eight thousand cases were reported at its peak in 1952. The, highly infectious and sometimes deadly polio virus attacked mainly young children and left them paralyzed. During the polio epidemic, children were quarantined in hospitals and put in iron lungs, metal chambers that helped victims of the virus to breath. While vaccines have eradicated polio in most of the world, 20 million polio survivors are experiencing new symptoms in midlife. These include overwhelming fatigue, muscle and joint pain, sleep disorders and heightened sensitivity to anesthesia and to cold. They also report difficulty swallowing and breathing. This is not a disease, but a condition called Post Polio Sequelae, caused by the progressive loss of motor neurons that began with the initial polio attack.

The Post Polio Institute in Englewood, New Jersey, is the center for Post Polio Sequelae research and treatment. This is where VOA's Rosanne Skirble met two survivors, Angene Anthony, 54, mother of two and a former weight-loss instructor, and Kathy Galletly, 55, a former medical assistant turned advocate for the disabled. Here are some of their thoughts about Post Polio and how they have learned to cope with its symptoms.

Anthony: "I had polio as a child, but was not aware of it until I was 26-years-old. My parents were not familiar with my having polio, only that I was ill for a couple of weeks and couldn't walk. It was noted as a virus, and it left me and I moved on."
Galletly: "My name is Kathy, and I had polio when I was seven. I remember my dad coming home from work and my dad saying that they had the [polio] vaccine. And, I remember my dad picking me up and he was very happy because he said, 'This is wonderful because we won't have to worry anymore with our children.' And, my mom saying, 'Stop jumping around with her, her neck is hurting, and she has got a fever and isn't feeling very good.' The next day I woke up and I was paralyzed. And, I was quarantined for many weeks. So, I went my whole life never got the use of my right arm back. [I had] surgery, [I] had [a] muscle transplant. That didn't work. And, I married. I had children. I worked and was one of these people who never recognized that I was disabled. I knew I had polio, but I was not disabled. And, then around 1989, I started to get weaker, and I came [to the Post Polio Institute] to find out I kept doing what I was doing."
Skirble: "By dealing with the problem are you feeling better?"
Galletly: "Emotionally yes. I feel 100 percent better. Physically, like everything else, I get good days and bad days. Before when I would get a bad day I would keep going thinking that it was just going to go away."
Anthony: "I was working at a job where I traveled all over the country. I spoke in front of people. So, I stood up all the time. And, I would drive quite a bit. While driving I began to realize because of the terrible fatigue and weakness I often had to pull over on the road. And, I was on New York highways and so forth, and [I had to] stop and nap a bit sometimes not even knowing where I was when I woke up. It became frightening, but as a type A [driven, high-pressure] personality I wouldn't give it up, knowing that this would pass. So, when I was told, 'You really should not work anymore,' I took that very, very hard. Today, I am coping better. I certainly am far better than I was. "And that is a great accomplishment for me."
Galletly: "To go into physical therapy for me was one of the most terrifying things that could have happened because it was whole different therapy than what we had as children."
Anthony: "The world is conditioned today, for many people, [they are] conditioned to exercise. We did that figuring that this was the cure, not knowing [that with exercise] we were doing more damage to ourselves than ever. And, when we came [to the Post Polio Institute] and were told that we had to cut that by three-quarters, that is when the mental devastation became even worse."
Galletly: "To many of us disability and abuse went hand in hand. So, you did not want to be disabled."
Anthony: "Yes, and fortunately for me and unfortunately for you Kathy, I didn't know what disabled meant until I was 48. And, I was shocked to realize that I was now labeled as a disabled person. It changed my way of thinking and looking at life in a completely different way. There are certainly many commonalties that [Kathy and I] share, but I have to say that at one point I didn't want to know anyone who had Post Polio [Sequelae]. I didn't want to hear about it. I was in total denial."
Galletly: "I found the most important step for me was to be with people who were supportive of me. That was my number one major step. And, for me I found that I had to be among my own [people with post polio] for a very long time, and sometimes not deal with people in the outside."
Anthony: "When I began to realize that it is not what I had that was important, but how I was going to cope with it, that is when my life began to change."
Skirble: "What kind of advise would you give to someone who may be listening to this broadcast, who may be sharing your symptoms?"
Anthony: "Listen to your body. It speaks to you clearly, and when it speaks to you and it hurts, make it rest because with Post Polio there is no really other way to do it. You have got to take care of it. It can be a better life if you so chose to pace yourself and rest. Those are the two most important things, and believe in yourself that [Post Polio] will be manageable. And, it is!"

Angene Anthony the former weight loss trainer, diagnosed at 48 with Post-Polio Sequelae has created a national lobby group that calls on shopping centers and malls to provide motorized scooters for disabled customers. Kathy Galletly has also become a spokeswoman for Post-Polio. In the Post-Polio newsletter she edits she hopes to raise awareness of the condition among survivors and health care workers. She welcomes contributions to the Post Polio Institute e-mail address at: