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