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<text id=94TT0549>
<title>
Mar. 28, 1994: Reliving Polio
</title>
<history>
TIME--The Weekly Newsmagazine--1994
Mar. 28, 1994 Doomed:The Regal Tiger and Extinction
</history>
<article>
<source>Time Magazine</source>
<hdr>
HEALTH, Page 54
Reliving Polio
</hdr>
<body>
<p>Forty years after the great postwar epidemic, the disease is
coming back to haunt its survivors
</p>
<p>By Philip Elmer-Dewitt--Reported by Alice Park/New York
</p>
<p> Roberta Simon was eight years old when poliomyelitis paralyzed
her from the neck down. She spent three months on her back in
a Washington hospital and then began a long series of treatments
and exercises that slowly, painfully restored full mobility
to her limbs. Like many brave polio victims, she pushed herself
hard. She was a majorette in junior high school, went to college
and eventually became a surgical nurse in a Chicago-area hospital,
working long hours on her feet in the operating room. "I was
out there doing my thing," she says. "I thought I was over polio."
</p>
<p> She was wrong. One day 36 years after the disease disrupted
her childhood, she felt some familiar symptoms. They started
as muscle fatigue, weakness and pain. Then her legs collapsed
under her, and she had to lean against walls to stand up straight.
She went to specialists and took test after test. "They all
came back negative," says Simon. "One doctor thought I was mentally
ill and sent me to a psychotherapist." Finally, four years later,
Simon was correctly diagnosed. She had polio. Again.
</p>
<p> Forty years after the great polio epidemic of the 1940s and
'50s swept through the U.S., infecting millions and leaving
some 640,000 (mostly children) with varying degrees of paralysis,
survivors are being revisited by a degenerative muscle condition
that has precisely the same symptoms as a mild case of polio.
The ailment is known as acute paralytic poliomyelitis sequelae,
or postpolio syndrome. Doctors aren't certain what causes it
or how best to treat it (for many years physicians prescribed
exercises that exacerbated the condition), but they believe
the problem will get worse before it gets better. Before the
end of the decade, by one estimate, postpolio syndrome will
strike 40% to 50% of the polio survivors, forcing many in their
50s, 60s and 70s to relive the childhood pain and suffering
they thought was behind them.
</p>
<p> The symptoms of postpolio mimic those of the original disease,
albeit in a less virulent form. They include fatigue and exhaustion,
muscle weakness, painful joints and, sometimes, difficult breathing.
The discomfort usually begins in the muscles affected by the
original infection but can spread. Patients who got polio before
age 10 and suffered particularly severe cases seem to be the
most susceptible to the aftereffects.
</p>
<p> What triggers postpolio syndrome? One possibility is that the
polio virus becomes active again after decades of lying dormant
in victims' cells. This notion gained support in 1991, when
British scientists reported that 58% of the postpolio patients
they tested had high concentrations of polio-type antibodies
not only in their blood, which is to be expected, but also in
their spinal fluid, which suggests a current infection. That
does not explain, however, why the disease resurfaces so long
after the original infection, and attempts to replicate the
British findings have been unsuccessful. Since it's possible
that the dormant virus could mutate into active new forms, scientists
are searching for such culprits.
</p>
<p> But most postpolio experts favor a competing theory that says
wear and tear on the nerves is to blame. Polio initially attacks
the nerves by invading the body through the mouth or nose, traveling
through the bloodstream to the spinal cord and lodging in the
nerve cells that control muscle activity. As the disease progresses,
nerve cells in the spinal cord are damaged or killed, paralyzing
muscles that lead to the arms, legs, stomach and chest.
</p>
<p> Fortunately, neighboring nerve cells that were not killed by
the infection are often able to regenerate axons -- the finger-like
connections that link nerves to muscle fiber. That's why the
standard rehabilitative therapy for polio victims has been to
stimulate nerve activity through heat and rigorous exercise,
encouraging the healthy nerves to grow into the spaces left
by their infected and damaged kin. "Use it or lose it" was the
refrain with which therapists urged on a generation of polio
kids.
</p>
<p> The problem is that these nerve cells have had to work a lot
harder to get the muscles moving -- like an eight-cylinder car
running on four cylinders -- and after 30 or 40 years, that
can take its toll. "Everything has a finite life-span, from
a car engine to the human heart," says Dr. Lauro Halstead, director
of the postpolio program at the National Rehabilitation Hospital
and a polio survivor. "A motor neuron is no different. Neurons
that normally drive 20 muscle cells in the polio patient may
now have to supply up to 2,000 muscle cells. Basically, this
is a demand that the motor nerves are not designed to sustain."
</p>
<p> Although there is no direct evidence to support the wear-and-tear
theory, it does make a lot of sense. It would explain, for example,
why so many people are coming down with postpolio syndrome now.
The great postwar epidemic peaked in the U.S. in 1952, when
more than 20,000 children were paralyzed by polio, and it tapered
off in the early '60s, after the Salk vaccine and then the Sabin
oral version were introduced. The first wave of postpolio symptoms
appeared in the early 1980s, 30 years after the epidemic's peak,
and if researchers are correct, the last wave should subside
by 1997.
</p>
<p> What can be done to help the postpolio sufferers? Not much,
unfortunately. There are only experimental treatments. A steroid
called prednisone, usually used to treat immune-system diseases
like multiple sclerosis, seems to help in postpolio as well,
reducing fatigue and increasing endurance. And Dr. Marinos Dalakas
at the National Institute of Neurological Disorders and Stroke
is experimenting with nerve growth factor, a protein that spurs
the proliferation of nerve axons.
</p>
<p> But the most effective therapy seems to be no therapy at all.
Postpolio sufferers are simply advised to take it easy -- to
pace themselves, listen to their body and avoid activities that
cause them pain. Dr. Halstead, who uses a motorized scooter
instead of walking long distances, calls this "babying the motor
neurons." His clinic uses sophisticated electromyography equipment
that charts the activity of muscle and nerve cells in order
to design exercise regimens tailored to each patient's particular
weaknesses. The approach is almost the exact opposite of "use
it or lose it." Says Dr. Jacquelin Perry, director of the pathokinesiology
center at the Rancho Los Amigos Medical Center in California:
"By decreasing the demand on these overworked neurons, we can
extend their life."
</p>
<p> For many patients, postpolio means having to take up the braces
and wheelchairs they worked so hard to escape. Stanley Lipshultz,
a Washington trial lawyer, is just starting to use the crutches
his doctor prescribed. "I had a handicapped license plate on
my car for two years before I actually used a handicapped parking
space," he confesses. "The hardest part is you feel you're falling
apart," says Rena Shnaider, a retired rehabilitative counselor
from Oakland, California, who has spent her life in a wheelchair
but who drove a car, went to college and had enough control
over her body to lift herself up when needed. "I know I can't
do half the things I used to, and it makes me sad to have to
accept it."
</p>
<p> If there is a bright side to postpolio syndrome, it is that
the illness gives many patients an opportunity to come to terms
with feelings they repressed for decades. For many, seeing those
braces again stirs memories from the '50s, when they were pulled
out of school, sent away for treatment and then brought home
to face insensitive peers. "You remember that while everyone
else was out playing football, you were watching and wishing
you could be with them," says Lipshultz. Through support groups
and counseling, many polio survivors are for the first time
putting those unpleasant memories behind them. "Many of us never
got a chance to mourn our losses," says Shnaider. "It's important
for people with postpolio to face their experience and allow
themselves to feel sad."
</p>
</body>
</article>
</text>