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Consumer
Monday    June 3, 1991

June 1991 Consumer -- Polio Patients Challenged by New Syndrome


        Former Polio Patients Challenged by New Syndrome
                        by Evelyn Zamula

Though Emily (not her real name) was nearly 10 when she
contracted polio, she has almost no memory of her illness, nor
does she want to recall it. Her mother told her, "Forget,
forget"--and Emily forgot.

Glimmerings of an endless summer in the hospital and a machine
that helped her to breathe sometimes surface in her dreams.
Long after she was well, when she was grown up, her mother
mentioned that at one point the doctors didn't know whether she
would live or die.

Emily made a complete recovery from this sometimes paralyzing
disease and was able to block out the memory of those days. But
now, 40 years later, unwelcome reminders of her childhood
illness are returning. She finds it increasingly difficult to
walk, especially when she is overtired--which is often--and to
breathe while sleeping.

More than half of the estimated 250,000 to 650,000 Americans
who had paralytic poliomyelitis 30, 40, even 70 years ago are
now reexperiencing some of their old symptoms in what is known
as post-polio syndrome. They complain of increasing muscle
weakness, joint and muscle pain, fatigue, breathing
difficulties, loss of stamina, low back pain, and intolerance
to cold. In at least 1 out of 25 survivors, the symptoms are
disabling.

While some of these complaints may be due to aging and years of
abnormal stress on weight-bearing joints in those who needed
mechanical assistance to walk, this does not explain the
progressive muscle weakness and muscle atrophy (wasting).
Although researchers are still not sure what causes post-polio
syndrome, most agree with Lauro Halstead, M.D., director of the
National Rehabilitation Hospital's Post-polio Program in
Washington, D.C.--and a polio survivor himself--who says: "The
most widely held theory is that the new muscle weakness is
related to overuse of polio-damaged nerve cells in the spinal
cord."

Polio's Three Strains

Thanks to an effective vaccination program, polio has been
nearly eradicated in the United States. However, as recently as
the 1950s, epidemics terrorized the nation, especially in the
summer months, leading to the closing of public pools and other
places where people congregated (see accompanying article).

Polio is a highly contagious disease caused by a virus that has
three distinct strains, called types I, II and III. Immunity to
one type doesn't confer immunity to the other two. Type I, the
strain that causes the most paralysis, is also the cause of
most epidemics.

Polio epidemics in temperate climates occurred most frequently
in the summer and early fall--the poliovirus flourishes in warm
weather. Children were more often affected than adults, which
is why the disease was once known as infantile paralysis.
Persons at greater risk for serious neurological damage during
epidemics due to lowered immunity included those who had recent
inoculations or recent operations, especially removal of
tonsils and adenoids (because the virus enters through the
mouth and multiplies in the throat). Pregnancy also predisposed
to paralytic polio infection.

The virus is found throughout the world, but primarily in
undeveloped countries with insufficient immunization practices.
It is excreted in large amounts in the feces of someone who has
polio or is recovering from it, and is probably spread through
hand-to-hand or hand-to-mouth contact. The poliovirus enters
the mouth and multiplies in the throat and intestinal tract.
Viruses may cross from the intestinal tract into the
bloodstream. They are carried to the spinal cord, where they
may kill or transiently injure motor nerve cells that control
skeletal muscles, causing paralysis.

Sometimes only a small group of muscles is affected, sometimes
the paralysis is widespread. The legs are affected more often
than the arms, but polio may partially or completely paralyze a
single limb, one half of the body, even all four extremities.
If the virus gets into the brain stem (bulbar polio), it can
paralyze muscles that control breathing, swallowing, and other
bodily functions. Most fatalities occur among those with
respiratory paralysis.

Post-Polio Syndrome

Only one or two out of every 100 people infected with the polio
virus develops an acute paralytic illness. In many cases, the
paralysis is only temporary. Up to six months to two years
after the acute attack, the muscles may recover to normal
strength. The nerve cells that were undamaged or partly damaged
take over the function of the dead cells by sending new sprouts
to muscle fibers that have been "orphaned," thereby improving
muscle strength.

The theory is that after years of this extra load, cells of
polio survivors tire and rebel, resulting in new weakness both
in muscles formerly affected and in those that were originally
unaffected. As the muscles lose nerve stimulation, they begin
to atrophy. In some cases, polio survivors must begin to wear
braces again, or return to wheelchairs. Those who had bulbar
polio often need devices to help them breathe. These include
several types of portable ventilators or, in more serious
cases, the tank ventilator or "iron lung"--a large, stationary
tank that encloses all but the head in a chamber that
"breathes" for the patient by negative pressure.

The new symptoms are more common among post-polio survivors who
had the worst cases initially--those who needed hospital care,
or were older than 10, or had paralysis in all four limbs, or
needed mechanical assistance to breathe. One fact that doctors
are sure about is that post-polio syndrome is not a new
infection, nor is it a reactivation of the old infection.

Drug Treatment

To relieve the pain of post-polio syndrome, doctors may
recommend nonsteroidal anti-inflammatory medications, such as
aspirin and ibuprofen (Advil, Motrin IB, Nuprin), and heat
applications on the affected area. Narcotics are avoided
because they depress the central nervous system and may
adversely affect breathing.

A study in progress at the National Institute of Neurological
Disorders and Stroke under the direction of Marinos Dalakas,
M.D., chief, neuromuscular diseases unit, is evaluating the
effects of prednisone (a synthetic compound that has the same
actions as a substance called cortisol produced by the adrenal
gland) on patients with post-polio syndrome in a double-blind
study, in which neither the investigator nor the patient knows
who is getting the drug and who is getting the placebo. The
current study is based on data from an ongoing study conducted
since 1983 that led Dr. Dalakas to hypothesize that the immune
system may be involved in the syndrome.

"We have found a number of irregularities in the immune system
of post-polio patients, which is why we're using prednisone in
this study," says Dr. Dalakas. "We don't know if these changes
are responsible for the manifestation of muscle weakness.
However, the use of prednisone as an agent that can modulate
[affect] the immune system, as well as act as an
anti-inflammatory agent, may prove to be effective in relieving
some symptoms of post-polio patients."

The immune system fights infections by attacking bacteria and
viruses that invade the body, but it can also attack parts of
the body itself, causing what are known as autoimmune diseases.
Prednisone can suppress a component of the immune system and is
often helpful in relieving muscle weakness and pain in muscular
inflammatory diseases, such as polymyositis (inflamed muscles).

Post-Polio Management

In treating the post-polio person, the doctor must first rule
out or treat other conditions that may be causing loss of
muscle function, especially as they affect breathing capacity.
This includes a thorough medical history and physical
examination, as well as testing by electromyography to
determine which nerves and muscles are affected. Muscle
strength should also be evaluated annually by a physical
therapist.

The doctor and physical therapist must also review any medical
devices or adaptive equipment currently being used by the
post-polio patient. The patient may need a higher level of
assistance, whether for walking and daily activities, or for
breathing.

To reduce fatigue and stress on muscles and joints, it may be
necessary for the patient to lose weight. However, maintaining
an adequate and nutritious diet is also important.

Non-fatiguing exercises should be substituted for any exercise
that increases weakness and muscle fatigue. Rehabilitation
experts recommend gentle muscle stretching exercises and
swimming, which is the best general conditioning exercise for
former polio patients.

Changes in lifestyle may be useful in preventing overuse of
muscles. That may mean adjustments in leisure-time activities,
as well as on the job. It's essential for the post-polio
patient to avoid becoming overtired.

An upbeat mental attitude also helps. Joyce Oakes, of
Rockville, Md., who was paralyzed from the waist down at age 6,
tells her story:

"I didn't have a chance to feel sorry for myself when I had
polio, because at that young age, I couldn't analyze what had
happened to me. I did have to learn to crawl and walk again,
even though I was told that I never could. And I learned to
dance and to ice skate. I think I was a better competitor
because of it.

"I also came from a family that couldn't afford to send me to
college, so I put myself through college on scholarship. Having
to learn to walk again and do other things, I became an
overachiever in some ways, like many other polio people. And
when I encountered unhappiness, things that didn't go my way in
later life, I think I weathered them better, with a better
perspective and a sense of humor. I tried to accept adversity
and find a way to make it work for me, rather than wallowing in
it. In many ways I don't consider it [polio] a hardship in my
life.

"What I don't like is that in the past year I find that I am
losing my strength. I can't ice skate any more, I can't go
hiking. But you don't give in to things like that, you don't
dwell on it. As you experience this weakness, you learn to pace
yourself, conserve your stamina. You play the cards you are
dealt, and get on with your life as best as you can." n

Evelyn Zamula is a freelance writer in Potomac, Md.

                    Vaccine Conquers Killer

When vaccines against polio were developed in the mid-1950s,
they spelled the end of a disease that became more disabling,
deadly and feared as time went by.

Though polio was not unknown in ancient times, the disease
wasn't mentioned much in the medical literature throughout the
ages and did not occur in large epidemics until modern times.
In fact, it was only in the late 18th century that the disease
was first identified as polio.

Today, polio is once more an insignificant disease in the
United States and advanced Western societies. Most American
doctors have never seen an active case of polio. But in the
first half of this century, polio was called the last of the
great childhood plagues. How polio emerged from centuries of
obscurity to becoming a killer just a few decades ago has to do
with sanitation--and the lack thereof--and the fact that the
poliovirus is excreted in the feces up to six weeks after
infection.

In less hygienic times--when the contents of chamber pots were
blithely tossed out of windows, open sewers fouled the street
and outhouses stood in the backyard--there was plenty of
opportunity to contract polio. Polioviruses infected each new
generation of babies, who were protected in part by antibodies
passed on to them by their mothers. These infections early in
life were usually mild and non-paralytic, sometimes appearing
with cold-like symptoms, sometimes with no
symptoms at all. They were often indistinguishable from a host
of other childhood diseases, and were rarely diagnosed as polio.

Ironically, cases of paralytic polio began to rise when
improved public sanitation and other health measures, such as
purification of the water supply and milk pasteurization, were
put into effect in economically advanced countries. With better
hygiene, there was less chance for babies and young children to
contract the mild form of the disease and acquire immunity.
When the disease struck older children or adults, it was more
likely to take the paralytic form.

In northern Europe and the United States, small epidemics of
paralytic polio began to appear in the late 19th and early 20th
centuries. However, polio's full impact wasn't felt in the
United States until the summer of 1916, when 27,000 people were
paralyzed, with 6,000 deaths. The Northeast was particularly
hard hit--in New York City and the surrounding suburbs, more
than 9,000 cases were reported, with 2,448 deaths. Many
attributed these cases to the large immigrant population.

The 1916 epidemic caused widespread panic. Thousands fled the
city to nearby mountain resorts. Movie theaters were closed,
meetings were cancelled, public gatherings were shunned.
Doctors postponed tonsillectomies (then a common operation for
children) until cooler weather when the epidemic abated.
Children were warned not to drink from water fountains;
amusement parks and bathing beaches were off limits. In some
towns, visitors from the New York City area were turned away by
armed citizens who feared the spread of contagion--shades of
the 14th century's Black Plague. Compared to the flu epidemic
that killed 500,000 Americans just two years later, the 1916
polio figures seem modest, but polio was especially frightening
because it could cripple. A life in a wheelchair, or in an
"iron lung," was a fate to be feared.

An epidemic appeared each summer thereafter in at least one
part of the country, with the most serious occurring in the
1940s and 1950s. The 1952 polio epidemic was the worst in our
nation's history. Nearly 58,000 cases were reported that year;
3,145 Americans died and 21,269 were left with mild to
disabling paralysis. More children died of polio in 1952 than
of any other infectious disease.

Vaccines did for polio what they had done earlier for other
childhood diseases, such as whooping cough and diphtheria. The
1954 field trial sponsored by the National Foundation for
Infantile Paralysis, in which 1.8 million children
participated, proved that the polio killed virus vaccine
developed by Jonas Salk, M.D., was highly effective in
preventing polio. Americans were jubilant, and Dr. Salk became
a national hero.

Following the licensing of the Salk vaccine in 1955, an intense
public health campaign was mounted to inoculate all American
children. Newsreels of the time show long lines of school
children patiently waiting to get their shots. Similar scenes
were repeated in 1961 when the attenuated live virus vaccine
developed by Albert Sabin, M.D., was licensed, only this time
the children were given a sugar cube soaked in the liquid
vaccine. Polio was virtually eliminated in the United States in
a few short years.

Both vaccines contain all three virus strains and effectively
prevent polio. The federal Centers for Disease Control in
Atlanta recommends vaccination with the attenuated live virus
vaccine for primary immunization of children in this country,
because its liquid form is easy to administer and well accepted
by children. It is supplied to doctors in single dosage forms
that can be administered in a number of ways, including
directly into the mouth with a dropper (the most common way for
infants); mixed with distilled or chlorine-free tap water,
simple syrup, or milk; or placed in foods, most commonly sugar
cubes. It also blocks implantation of the virus in the
intestines, where it multiplies.

The killed virus vaccine requires a series of injections, which
promotes more anxiety among youngsters. However, many countries
use the injectable vaccine with great success.

On average, fewer than 10 cases of polio a year were reported
from 1975 to 1990. Some of these cases have been associated
with the administration of the attenuated live virus vaccine,
according to CDC. Other cases have been brought into the
country by immigrants or visitors from abroad. The last U.S.
polio epidemic occurred in 1979, when 10 Amish children, whose
parents had refused to have them vaccinated on religious
grounds, came down with the disease. Worldwide, the World
Health Organization estimates that 250,000 cases of paralytic
polio occur each year.

Many health professionals believe polio can be completely
eradicated through vaccination, as was smallpox in 1977. WHO
has set the year 2000 as a goal for worldwide eradication of
polio. However, Donald A. Henderson, chairman of the Pan
American Organization's Technical Advisory Group on
Immunization, believes this objective will be achieved only
when ongoing research produces a vaccine that is stable in high
heat (polio vaccines deteriorate in hot climates unless they
are refrigerated) and that can be given in a single dose rather
than three to ensure patient compliance.

--E.Z.

Recommended Polio Immunization for Infants

Primary Series

- First dose: when baby is 6 to 12 weeks old (often given with
first DTP inoculation at 2 months)
- Second dose: not less than 6 and preferably 8 weeks after
first dose (commonly given when baby is 4 months old)
- (In areas where polio is common, an optional dose also may be
given at 6 months of age.)
- Third dose: 8 to 12 months after second dose.

Booster
Upon entering elementary school.