lest any man spoil you through philosophy and vain deceit, after the tradition of men,
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Misguided diagnosis has been the curse of Jody Taylor's retirement, following him everywhere.
He was standing on the deck of a cruise ship in the Mediterranean, watching the sun set after dinner, when a young English doctor approached him.
"You have the worst case of arthritis I have ever seen," said the physician, a man in his late 20s.
``Arthritis?" replied an incredulous
Taylor. ``This is not arthritis. This
The doctor, who had just started a practice in a small town near the Welsh border, bristled with surprise. He had never seen a polio survivor nor studied the disease in medical school.
"Unfortunately, this is what we run into all the time," said Taylor, 67, a retired architect. "Those who survive polio have a chronic problem trying to find a physician who has any knowledge of the disease or their needs."
If there is a lost generation within medicine's dramatic evolution the last half of the century, polio survivors claim they are it. And they claim it loudly and doggedly, with fervor characteristic of those who have fought physical obstacles daily since childhood.
The estimated 1.3 million polio survivors in the United States are a finite class that diminishes with age, gradually moving toward extinction. The World Health Organization believes that by 2005, new cases of polio will be eliminated worldwide.
The great success at preventing the disease
has greatly reduced interest in
"I think sometimes that there is anger on the part of many polio survivors," said Joan Headley, a survivor and director of the International Polio Network in St. Louis, Mo. "There was such a good effort with the vaccine early on and in raising money. The bad thing with a cure for polio is that now they look at you like there isn't any polio anymore."
From his Delray Beach condominium, Jody Taylor works to remind people that polio still causes suffering. He is the president of the Post- Polio Support Group of Palm Beach County. By newsletter and activism, he seeks to raise awareness about the disease.
"The real problem we have is still getting the right treatment," Taylor said. "Since the '60s, there's been virtually no training about polio in the medical schools. You go to your personal physician and he pretends to treat you, but he really doesn't know anything about post-polio syndrome."
Several years ago, Taylor suffered excruciating pain in his legs after a fall and sought treatment at an emergency room. He said the doctor gave him Tylenol and told him to go home and rest.
"He had no concept of what pain from post-polio syndrome can be like," Taylor said. "He refused to deal with the level of pain I was having because of a simple fall, with no real obvious damage."
Post-polio syndrome can bring a multitude of symptoms, ranging from muscle and joint pain to depression and sleep problems. Fatigue is the most common nemesis. Unable to find satisfactory treatment here when his symptoms surfaced, Taylor in desperation went back to Ohio and sought out the doctor who had diagnosed his polio 35 years before. Such aggressive action is typical of polio survivors, who are known for their undaunted Type-A motivation.
"They tend to be activists and high achievers, very exceptional people, " said Dr. Paul Peach, director of the Palmyra Post-Polio Clinic in Albany, Georgia. "This tends to come out of their recovery in the '40s and '50s. Their parents generally were very supportive and drove their children. Polio affected the middle class more, so they were better off in the socioeconomic sense, too."
The paradox is that this can be the worst mind-set for a patient whose best prescription is energy conservation. The qualities that served them well as youths abruptly become liabilities in later years for polio victims. Taking it easy does not come easily for survivors who have been fighters for decades.
Still, many PPS patients say they are routinely dismissed as hypochondriacs. A PPS support group survey found 80 percent of respondents were misdiagnosed by their family doctors in Florida.
"When I first started having symptoms 20 years ago," said Ruth Thurlow of Delray Beach, ``I didn't know what I had. I went to several doctors and two of them told me to go see a psychiatrist. I've given doctors information on PPS, and I'm sure they threw it away. Why should they be interested? The problem isn't increasing. We're all here. We have it. Nobody else is going to get it."
Response within the medical community to PPS
may have been belated, doctors say, but it is improving. Research has produced a better
understanding of the cause. It appears weakness and pain come after nerve
"It's true that because we haven't seen acute polio in this country since the epidemics of the '50s, a lot of people weren't aware that post-polio syndrome exists," said Dr. Carol Vandenakker. ``When they encountered the new problem, they ran into medical professionals who told them they were just getting older. But the problem probably is not as bad as they perceive, and there is help out there. They just have to look a little bit."
Since 1994, Vandenakker has run the Post-Polio Clinic at the University of Miami Hospital, one of about 65 post-polio clinics that have been created in across the nation during the past 20 years. She has seen close to 200 patients since being persuaded by a convincing post-polio support group that she should start the clinic.
"I was basically drafted," she said.
Vandenakker and Peach believe PPS can be managed, with favorable results, if patients make lifestyle changes and learn to harbor their resources.
"It is basically an overuse syndrome," Peach said. ``Once you take appropriate steps, the symptoms can be reduced or eliminated. Unlike some other disorders, it is by no means necessarily progressively degenerative."
At UM, where the Miami Project seeks a cure for spinal injuries such as that which paralyzed actor Christopher Reeve, research may someday be of value to polio survivors. Vandenakker's clinic, meanwhile, is busy.
"Much to my surprise, there's been no shortage of patients," she said. "There are still people in their 40s who have polio. Much younger people with polio have immigrated here from other countries. Even if polio is eliminated by 2005, about 12 million survivors will remain. There's a lot of work to do."
As for Taylor and the English doctor, "We exchange Christmas cards," Taylor said. " I've told him a lot about polio."
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