Polio, a crippling, highly infectious and sometimes deadly virus that largely attacks young children, has been eradicated in most of the world, except for pockets in India, Nigeria and Pakistan, where polio remains endemic. While a global initiative is underway to rid the world of polio, some 20 million polio survivors worldwide are waging a new battle against a medical condition called Post-Polio Sequelae. The crippling condition, which weakens victims decades after their initial polio attack, has spurred health care workers to search for an effective treatment.
It takes three months to get an appointment at the Post Polio Institute in Englewood, New Jersey, where patients are evaluated and treated for Post-Polio Sequelae. These polio survivors experience overwhelming fatigue, muscle weakness, muscle and joint pain, and heightened sensitivity to anesthesia, and to cold. They also report problems swallowing and breathing.
Institute Director Richard Bruno says the delayed symptoms, 35 to 40 years after a polio attack, are easy to explain, although the condition, he says, has escaped proper diagnosis by patients and doctors.
Post Polio Institute surveys reveal the facts. A typical polio infection kills half of the motor neurons in the body, those nerve cells that make the muscles work. "After polio, those remaining damaged neurons [do] on average sixteen times more work than they did originally. And what [that] did was to set these polio survivors up for a fall. PPS over the years is the result of those overworked damaged neurons dying off or failing as a result of what we call overuse, abuse," says Dr. Bruno.
Richard Bruno says the condition gets worse if untreated.
Bruno: "Polio survivors are losing on average seven percent of their motor neurons a year. Now if they only had 50 percent to begin with and they loose seven percent a year, that is not a pretty picture for polio survivors down the road. All you have to do is to read a couple of articles on PPS and you will see that this is a physical condition and not a mental condition."
Skirble: "And, not a disease."
Bruno: No, PPS is not a disease. This has nothing to do with the poliovirus hiding in the spinal cord and becoming reactivated. This is not a neurological disease. It is a break down of the body's compensatory mechanism. The body was damaged. It recovered as best it could. It was overused and now that overuse is causing those damaged overworked neurons to fail."
It took Angene Anthony 22 years to find out what was wrong with her. That was in part because she didn't know she had polio as a child. All she remembers is an illness with a high fever, temporary paralysis, but nothing diagnosed as polio.
As she got older the fatigue, muscle soreness, eating and sleeping problems got worse. It remained a mystery even to her doctors. Angene Anthony was 48, the mother of two grown daughters, at the peak of her career as a trainer for a weight loss program when she finally discovered the truth. "I was in total shock finding out I had [had] polio, and I think that was just as devastating as the illness itself, mentally, just recognizing the fact that I had polio and then secondly, I had Post-Polio," she says. "What happened [to me?]"
Her diagnosis came from the Post Polio Institute. Therapists there advised her to conserve energy. She began to use a wheel chair, take frequent naps, eat a higher protein diet, and as she describes it, totally rearrange her life. "When I began to realize that it is not what I had [post polio] that was important, but how I was going to cope with it, that is when my life began to change," she says.
Angene Anthony now wears a brace, walks with canes or rides in a motorized scooter painted the same bright red as her nails. Activity logs tell her what triggers fatigue and other post-polio symptoms. But, the most dangerous part of treatment, she says, is when she starts feeling better.
Anthony:"Then you call Dr. Bruno and say, 'I am going out to see the world,' and you do. And, he says, 'You better be careful because that is when you hit that brick wall again.' And, you'll hit [it]. And if you think you won't, you are deceiving yourself. The fact is that unless you learn to deal with it and cope with it, both mentally and physically you will not get anywhere [in your therapy].
Skirble: "What kind of advice would you give to someone who may be listening to this broadcast, who may share 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 other way to do it. You've got to take care of it or it won't work anymore. And, I think the most important thing I would say to them is to pace yourself. It can be a better life if you so choose to pace yourself and rest. Those are the two most important things. And, believe in yourself that this will be manageable." While following her own advice has not been easy, Angene Anthony says she has learned to live with Post Polio Sequelae and grown emotionally in the process. She says her passion to share her story has given new meaning to her life. She has created the National Scooter Shopping Initiative, a lobby group that calls on shopping centers and malls to provide motorized scooters for disabled customers. She says she hopes speaking out for those disabled by post-polio will raise awareness in the medical community about the condition and reduce the pain for those who suffer from it.