16th September 1997

Polio fight enters round 2
Survivors of disease facing renewed challenge with PPS

Walter Pierce, Staff Writer
The Daily Advertiser, Tuesday September 16th,
Lafayette, Louisiana.

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 theorized.

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 muscles.

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 worked temporarily.

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

15th September 1997

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.

Larry White