The support group’s membership log, 100 strong, is a Who’s Who of accomplishment: a retired judge who was the first female city council chairperson in Massachusetts. A woman who earned her Ph.D. from New York University, going on to manage several NYC area hospitals. A renowned automobile design engineer, commanding his golf clubs and his steel guitar with equal style. A university mathematics professor, and a college librarian.
What they have in common is not a shared alma mater or membership in the same country club. They all contracted polio as children or teenagers, persevered to live positive and productive lives full of achievement, and are now realizing that the disease hibernates but rarely dies.
Members of the Post-Polio Syndrome (PPS) Support Group gather in the cafeteria of Physicians Regional Medical Center in North Naples on the first Saturday of each month from November through April. Speakers bring them updates about PPS, a condition forcing many of them to depend again on leg braces, crutches, canes, walkers and wheelchairs after many years of relative freedom from assistive devices.
“We don’t get into titles,” says Barbara Mayberry, 64, of Naples, who functions as the group’s unofficial Fairy Godmother, always ready with a phone number, news about a member who’s moved away, or a copy of a new journal article on PPS. She’s been attending meetings since the group was formed with 15 members in 2003. “We don’t collect dues, we don’t take minutes, we don’t use Robert’s Rules of Order,” says the 4-foot-10 dynamo. “We strive so hard not to become a pity party,” Mayberry explains. “We meet to learn everything we can about PPS. We keep it fun and upbeat and don’t take ourselves too seriously.”
Afterwards, many group members meet for lunch where talk about aches and pains is off-limits.
She hates the word “crippled,” preferring to say “I’m short and I walk with a crutch” when describing herself. “A lot of us who had polio as young children developed a can-do attitude, trying to prove to the rest of the world that we can do anything.
“For these types of personalities, what we’re going through now becomes a very hard thing. In the group, we get help with the emotional aspects of dealing with these changes. Our meetings are not about our disabilities, but about the abilities we have.”
From diagnosis to adulthood
Mayberry was diagnosed with polio in 1952 at the age of 5, and required her to be treated at a hospital three hours away from her home in Cisne, Ill., population 800. Visiting hours were limited to one hour each Wednesday evening and two hours on Sundays.
She walked out of the hospital six months later with long leg braces and crutches into a family that eventually grew to five siblings. As the oldest, she was expected to do everything any eldest daughter would do to help care for her brothers and sisters.
Later, she married David, her high school sweetheart, and gave birth to a son. They farmed together while Barbara worked in the community college library and her husband ran a mechanic shop. After moving to Naples in 1987, Barbara worked for the Collier County school district for 13 years.
Early symptoms of PPS appeared in 1998, but the strength in her legs and back was severely compromised when a drunk driver rear-ended them two years later, breaking both of Barbara’s legs. Following intensive physical therapy, she is back to enjoying her two grandchildren, working in the yard and traveling with her husband.
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As an only child growing up in London in 1944, Brian Bunce was one of hundreds of children parents sent to country villages to escape blasts from “doodlebugs,” the German’s unmanned long-range missiles.
“I was beyond the reach of the rockets, but not beyond the reach of the polio virus,” recalls Bunce, now a 73-year-old Naples Park resident who is an active member of the Naples Post-Polio Syndrome Support Group.
Just after his seventh birthday, safe in the home of his aunt and uncle, he began having trouble breathing. A doctor misdiagnosed him as having pneumonia, and by the time another physician recognized the dreaded polio virus, Bunce couldn’t get out of bed.
During many months of hospitalization, his working parents could manage only weekly visits due to wartime travel restrictions. He still remembers the hospital staff wheeling a large yellow wooden box to his bedside.
“It was an iron lung, and I screamed and screamed from the fear of being encased in it. Apparently it was decided that, if I had that much power in my lungs, I didn’t need the iron lung. So I was reprieved.”
Eventually he was fitted with two leg braces and a back brace and taught to walk using first a walker, then a cane.
Back home, although he had missed more than a year of schooling, he graduated second in his class and began working for Ford Motor Company United Kingdom as a clerk in the company’s medical clinic. He did so well there that Ford sent him to school to become a draftsman and later an engineer. So began Bunce’s long career in the automobile design industry in England, Sweden, and the U.S. working for Ford and Volvo.
“Ninety percent of people who are handicapped will strive to be normal,” he says. “I just wanted to be like everyone else.”
By age 20 he no longer needed his leg braces, but 33 years later after breaking his kneecap in a fall, his doctor advised him to begin using a brace again on his left leg.
At age 58, after experiencing the relenting march of fatigue, he retired early on disability. Today, he uses an electric wheelchair inside his home and an electric scooter outdoors. With an automatic transmission in his ramp van, Bunce says, “I can get along with no problem at all.”
He joined the PPS support group 10 years ago “looking for education, updates from doctors, and advice from physical therapists on how to exercise.”
Symptoms return in adulthood
One of the challenges is to walk “the fine line between balancing an exercise regimen to strengthen muscle and not over-doing it enough to weaken muscle groups,” explained Dr. John Wilson, M.D. a Physicians Regional Medical Center neurologist who treats some members of the PPS Support Group.
It’s best to avoid activities that cause pain or fatigue for more than 10 minutes, he adds.
Typically, PPS symptoms begin to appear 30 to 40 years after the initial polio infection, he says, generally affecting patients from 60 to 75 years of age.
New and progressive weakening of muscles is generally the first tip-off that PPS might be lurking, followed by fatigue, joint pain, or curvature of the spine.
Tests he uses to confirm a diagnosis of PPS include neurological studies called electromyography (EMG) tests, which detect and record electrical activity generated by muscle fibers.
Currently, there is no effective drug treatment for PPS, he adds, although symptoms may improve in some patients with the use of immunoglobulin (IVIG) therapy. Research continues, and gene therapy is likely to contribute to future developments, in his view.
“I have had the pleasure of treating many individuals with paralytic polio and, subsequently, PPS,” Dr. Wilson says. “These are amazingly strong people who don’t look back, but are always seeking new adventures and challenges.”
For more information
When: Meets first Saturday of each month,
10 am to noon
Where: Physicians Regional Medical Center
Cafeteria, 6101 Pine Ridge Road, Naples
Contact: Barbara Mayberry (239)-353-2410
For more information about PPS: