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Walter Pierce, Staff Writer
The Daily Advertiser, Tuesday September 16th,
Photo.. Millie Malone of Dow City, Iowa, and Jane Bercier, of Lafayette,
listen to other PPS sufferers describe their personal dealings with the
disease. [Monday at Bercier's home.]
LAFAYETTE - We thought we had polio licked - beaten down like so many
of [humanity's] maladies. There's a touch of hubris in the notion that
disease can be eliminated, that our vaccinations and rehabilitations can
triumph over infirmity.
The [spectre] of polio proves it. The University of Michigan's Department
of Physical Medicine and Rehabilitation, a leading polio research center
and clearing house for polio information, estimates that 12 million people
worldwide have polio today. Most are in Third World countries.
The last major polio epidemic in the United States began in the late
1940's, raged in the '50's and waned by the mid 1960's. More than 1.5
million people, mostly children were afflicted. Of these 650,000 cases
resulted in paralytic damage.
What's startling about polio today is not the negligible number of new
cases but the number of relapses. The condition, in medical literature
since the mid 1980's, is called Post Polio Syndrome (PPS), according to
U.M.'s Sonny Roller, a research fellow at the university. The disease's
profile goes back more than 100 years.
"The symptoms include new pain, weakness and overall fatigue," Roller
said. "It usually hits people about 30 years after they had polio."
In the south Lafayette home of Jane Bercier, five women - Bercier included
- gathered for support after attending a recent post-polio conference
in Atlanta. It's an informal support group that will travel next to Tennessee
to be with other PPS sufferers. Men don't join support groups, the women
All of the women were afflicted as children with a disease they didn't
understand. They are now managing the debilitating effects of PPS. One
wears a leg brace, another is in a wheelchair. Others show tell-tale signs
of polio's handiwork; gnarled, depleted muscles or surgical scars.
Twenty years ago, these women thought polio was behind them. Then the
fatigue set in, and the memory loss, and the vision problems and withering
Polio didn't go away. It took a 30 year nap.
"I was diagnosed two years ago, but I only came out of denial three months
ago," said Sparkie Lujan of Frenchtown, Mont., who said that as a girl,
doctors urged her to "exercise, exercise, exercise" as part of her recovery.
It turns out that the exercise may have hastened the onset of PPS.
"Polio sufferers were really pioneers and guinea pigs for rehabilitation
medicine," said Roller, explaining that the virus killed motor neurons
that control muscles. Exercise was thought to help those neurons sprout
new endings, and it worked. But the prevailing theory now is that it only
The other women in the group - from England, Canada and Iowa, - all were
misdiagnosed like Lujan and Bercier. All have had problems with insurance
companies. All have lost their livelihoods. And all were diagnosed within
the past five years.
The number of polio survivors coming down with PPS range from 25% up
to 75 %. Persons concerned that they may have PPS should call the International
Polio Network at (318) 534-2915, or connect to the Lincolnshire
Post-Polio Network on the Internet at http://www.zynet.co.uk/ott/polio/lincolnshire/.
Relayed by CarolAnn
HAPPY 3RD. ANNIVERSARY SJU POLIO FORUM
On September 14, 1994, theThe St. John's
University Polio List forum began its function as an information and
support forum for polio survivors.
The forum was created with the help of Dr. Zenhausern, professor of psychology
at St. Johns University in New York, NY, and currently sponsor of some
600 SJU forums with 150,000 subscribers and 600,000 daily email messages.
This forum's first List Owner was Bob Mauro, an active writer and promoter
of disability rights and a contributing subscriber to the forum. Bob was
encouraged to start the forum by Eddie Bollenbach, a professor of biology.
During the weeks following the creation of the forum, Eddie would lay
the foundations for much of the information concerning Post-Polio Syndrome
that is available to us today.
So today, we salute these three pioneers who gave us what we have come
to know as a daily source for information and support for polio survivors.