Posted on Sun, May. 15, 2005


SURVIVORS' NIGHTMARE: The polio epidemic isn't over for millions of people, including many in Manatee


Herald Staff Writer

Marge Torre swallows her anger when people yell at her for parking in a handicapped spot.

Trim, tan and lively, 67-year-old Torre doesn't look like she needs the special privilege.

But then you notice the pain in the Bradenton woman's eyes.

Torre is one of 2 million Americans and some 20 million people worldwide who suffer from the late effects of polio - Post Polio Syndrome, an umbrella term covering a range of symptoms including overwhelming fatigue, muscle pain and weakness, joint pain, sleep disorders, swallowing and breathing problems, and heightened sensitivity to anesthesia and cold.

No one knows how many post polio patients live in Manatee County, but Michelle Guevin, a Bradenton physical therapist, says she treats at least one or two every week.

The late effects of polio begin about 35 years after the onset of the polio virus, experts say.

"Few medical people understand or even know the condition exists," says Torre, who was 7 when she contracted polio in 1945. "We are the largest group of forgotten people in the world."

The Salk and Sabin vaccines not only wiped out the epidemic in the mid-20th century, they also wiped discussions of polio out of the medical textbooks.

Few medical students ever study polio. Fewer still know the virus can cause problems in later life, says Dr. Fred Maynard of the Post Polio Health International, a global resource based in St. Louis.

Maynard recently visited Bradenton to meet with more than 50 local polio survivors.

"Late-effects polio is a hard diagnosis to make," Maynard says. "There is no perfect test and no real clarity on the definition. But one thing is certain: Polio survivors are getting older and they are experiencing more frequency of symptoms and weakness."

Maynard bases his diagnoses on the following criteria: a prior episode of polio followed by a period of functional stability, then gradual or abrupt new weakness usually accompanied by a range of symptoms.

"It is diagnosis of exclusion," says Maynard. "A physician who does not see a lot of these symptoms or specialize in the late effects of polio tends to either under-diagnose or over-diagnose the problem."

To look at Torre, one would never suspect her legs were once paralyzed.

But thanks to her medical team, based in her hometown of Philadelphia, Torre has been able to stay out of a wheelchair through constant therapy and multiple surgeries. The team's help is so essential to her well-being, Torre now travels from Bradenton to Philadelphia for her post-polio care.

Torre has had tendon transplants, her heel cords lengthened, her joints suspended and each of her big toes fused to maintain her mobility. She has endured three major back surgeries to correct damage caused by limping in her early years.

"I stopped counting my surgeries at 25," says Torre, who recently learned she must have another surgery if she wants to stay active.

"I don't have the prettiest feet in the world, but they are the most expensive."

Another classic case

Jimmie Hamrick's career with Manatee County Emergency Medical Services was cut short one year ago by Post Polio Syndrome.

After 32 years of helping people in medical crisis, Hamrick faced one of his own. He learned that the extreme weakness, migraine headaches and pain he had been experiencing for years were really the late effects of the polio virus.

Hamrick was 3 when polio invaded his young body. He spent six months in an iron lung in a hospital in Charleston, W.Va. His parents could visit only on weekends because the drive from their home in Webster Springs was more than 150 miles.

"I remember being in the iron lung and looking through a mirror to see my parents, knowing I would never get out," Hamrick says.

But miraculously, Hamrick did escape, although his doctors never could explain why he survived when other children in the polio ward died.

"When they tried to wean me off the lung, they would take me out and force me to breathe on my own," Hamrick recalls. "I would gasp and turn blue trying to get a breath. My mother would get very upset."

His doctors took him out of the lung again and again, each time for a longer period, until his atrophied muscles and diaphragm were forced into action.

"I would sit and gasp," Hamrick recalled, "and then one day, I was able to breathe."

He remembers his strength returning, little by little, until he could walk out of the hospital, with his legs strapped in braces and his body supported by crutches.

Through therapy, Hamrick learned to run and play like any child. In high school he joined the football team. In the Army, he served as a medic in Vietnam.

When he left the Army, he moved to Manatee County where he worked nearly every job in EMS including chief, supervisor, paramedic and director of Manatee County Public Safety.

But by the late 1980s, his muscle aches and joint pain worsened. He developed a swallowing problem, and his migraines became more frequent and severe.

Like most physicians, his primary care doctor and the specialists he saw treated each symptom in isolation, not realizing that they had a root cause going back to the polio virus that had put him in an iron lung.

But on Aug. 20, 2003, Dr. Burton Marsh, a polio expert in Ocala, put the symptoms together, diagnosing Hamrick with Post Polio Syndrome.

"Marsh said I was one of the most classic cases he had ever seen," Hamrick says. "He also told me that, with treatment, I should improve within six months."

Marsh's prognosis proved optimistic.

Six months later, Hamrick's symptoms were worse. On March 19, 2004, Hamrick was forced to give up his career at age 51, long before he ever thought he would retire.

Today, by following a high-protein diet and treatment prescribed by Dr. Richard Bruno of the Post Polio Institute in Englewood, N.J., Hamrick is feeling better.

But his life is greatly compromised.

Bruno warns Hamrick not to let already-weakened muscles become more fatigued. Pushing them past the point of pain, Bruno said, can cause even more damage.

Bruno, who is also a polio survivor, restricted Hamrick to 2,400 steps a day - a distance Hamrick easily covers in his morning routine between waking up, getting dressed, having breakfast and walking down the lane to get his newspaper and mail.

Therapy can help

Michelle Guevin of Bay Physical Therapy in Bradenton advises a more active therapy program to help polio survivors increase range of motion and improve their mobility.

Guevin trained with Dr. Jacqueline Perry of Los Angeles, one of the first polio experts to realize in the late 1970s that aging polio victims were developing new physical problems.

"Most therapists want to prescribe a general exercise program," says Guevin, whose post-polio patients include Torre. "But the exercises need to be site-specific. Late-effect polio creates a splotchy weakness."

Guevin is trained in the Graston Technique, a soft-tissue massage performed with stainless steel instruments. Some are short and have a slight bend. Others are long and straight. Guevin uses the instruments the way a carpenter planes wood. By pulling the heavy tool in one direction along the length of muscle, Guevin can redirect the tangled fibers so they line up in one direction, increasing the injured muscle's range of motion.

Both Torre and Hamrick also use special respiratory machines to help them breathe at night. About the size of bread boxes, the breathing machines constantly increase the pressure in their airways so they can sleep.

Hamrick's condition is so severe that he needs an advanced model that counts his breaths and forces air into his lungs if his respirations fall below 12 per minute.

Torre fears that there are many polio survivors who are suffering needlessly.

To grasp what is happening to their bodies, polio survivors need to understand how the virus affected their muscles.

The polio virus destroyed or injured the nerve cells that cause muscles to move, resulting in paralysis, Maynard explains. Polio survivors who regained movement did so because their nerve cells sprouted new connectors to those orphaned muscles. Those new connectors created a restructured neuromuscular system that helped polio survivors move and walk again.

But those connectors, Maynard notes, do not have the capacity to endure heavy use over long periods of time. The overworked muscles and joints begin to break down as people age.

"It is so important for people to have these problems checked out," Torre says. "But where are the primary care doctors who understand?"

Donna Wright , health and social services reporter, can be reached at 745-7049 or at dwright@HeraldToday.com.





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