U.S.: University collecting polio survivors' stories

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Source: http://www.sltrib.com/News/ci_14157219

U. collecting polio survivors' stories
Archive ? Oral history record will capture the cultural and medical history of a once 'terrifying disease.'

By Lisa Rosetta

The Salt Lake Tribune
Updated: 01/11/2010 06:54:39 AM MST

Even today, Mike Collins can't be in the same room with a tank respirator, better known as the iron lung. A cardiothoracic surgeon at Intermountain Medical Center, his heart rate skyrockets just at the sight of one.

Stricken with polio at age 5, Collins' breathing muscles were paralyzed, forcing him to spend hours in one of the metal devices in a San Francisco General Hospital ward alongside other sick children.

Nurses terrorized him with the life-saving machine: Soil your diaper again, they'd tell him, and we'll put you back in it.

Collins' twice-daily "Sister Kenny" treatments -- searing hot compresses placed over his body to temper muscle spasms -- weren't much better. Unable to move them off if they burned, Collins' only recourse was to cry.

He remembers a volunteer in a gown and mask whose job was to push a big cauldron of hot chocolate and serve it to the children. "I always wondered why, when he gave hot chocolate to the little kids, he would cry," Collins said. "It just didn't make sense to me."

It's stories like these that the American West Center at the University of Utah wants to hear -- and save.

The center is developing an oral history record of polio survivors, as well as the clinicians who treated them. The project, once completed, will be made available to researchers and the public through the Special Collections Department at the U.'s Marriott Library.

Becky Lloyd, the researcher heading up the project, said her aunt's own experiences as a polio survivor inspired the effort.

"It was a real terrifying disease at the time," she said. "They didn't know what caused it; they didn't know how to treat it."

Lloyd said the purpose of the project is to capture the social, cultural and medical history of polio -- in particular the course, treatment and outcome of victims -- a disease with which a dwindling number of people have any experience.

During the first half of the 20th century, between 13,000 and 20,000 Americans were infected with polio each year.

Utah was hit especially hard. In 1951, the worst polio year in the state's history, 600 cases occurred, according to stories in The Salt Lake Tribune's archives. That incidence rate was the highest in the nation, with more than 80 cases per 100,000 people, the National Foundation for Infantile Paralysis reported in January 1952.

Dale Lambert, a trial attorney and former Salt Lake City council member, contracted it when he was 3.

Doctors told his family he had one of the two worst cases in San Diego County in 1949. Both of his legs were paralyzed, and he experienced weakness in his stomach and back.

During the nine months he spent in a hospital, Lambert's family faced strict visitation rules: Once a week for one hour.

Lambert, who has an identical twin, was a March of Dimes poster boy encouraging vaccination against the disease. "They thought it was kind of an interesting selling point because we looked exactly alike, except I had crutches and braces," he said.

Like Collins, Lambert doesn't have happy memories of the hospital ward. Rowdy children got visits from the bogeyman, nurses told him; one night they locked him in a room by himself. "I was scared all night," he said.

Lambert underwent six orthopedic surgeries to correct deformities, stabilize joints and improve function -- even after a rigorous physical therapy regimen.

Marlin Shields, who retired as the director of rehabilitation services at Intermountain Healthcare in 2000, helped treat polio victims. A physical therapist, Shields taught "frog" breathing to partially paralyzed patients dependent on an iron lung.

The technique, developed at Los Angeles' Rancho Los Amigos Hospital, involved gulping down air. Patients sucked in a small amount, then forced it through their voice boxes and into their lungs with the push of their tongue.

One patient followed Shields from California back to Salt Lake City, the place they were both originally from. At the U. hospital, they continued the therapy.

"[The patient] was able to get out of the iron lung over a real long period of time," Shields said. "It took a real effort overcoming tremendous fears."

The patient was able not only to breathe but also to cough, allowing him to relieve throat irritation common among those who are paralyzed.

"Physical therapists in this day and age don't know anything about [frog breathing]," said Shields, who graduated from physical therapy school after the vaccine was developed. "Soon after that, there was no more polio."

The American West Center's Lloyd, who had intended to interview about 50 people, said she has received an overwhelming response to her ads for survivors -- about 10 e-mails an hour.

"Coast to coast, now I've heard from people all around the country," said Lloyd, who is conducting the interviews in person and over the phone. She'll send a transcript back to the survivors for review; they can make corrections or changes if they wish.

The research is funded with a $9,000 grant from the Utah Medical Association Foundation -- founded in the 1950s in response to the polio outbreak. It's timely: many survivors, including Collins, are now struggling with post-polio syndrome, characterized by muscle weakness, fatigue and, in some cases, muscle atrophy. It affects survivors years after recovery; an estimated 440,000 people in the U.S. may be at risk, according to the National Center for Health Statistics.

"You live with the muscle pain and the cramping and you just learn how to deal with it," said Collins, who has one foot two sizes bigger than the other as a result of the disease.

Polio was declared eradicated from the U.S. in 1994, but the virus still circulates in other parts of the world. An outbreak in Nigeria -- the only place where all three serotypes of the virus exist -- is now spreading to west African countries, the World Health Organization reports. Southern Afghanistan and northern India have also seen cases.

"That's really a shame," said Lambert, who still wears a leg brace and uses crutches.

lrosetta@sltrib.com

Are you a polio survivor?

The American West Center at the University of Utah is developing an oral history record of polio survivors. To participate, contact Becky Lloyd at 801-581-7611, or becky.lloyd@awc.utah.edu.

 

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Re: U.S.: University collecting polio survivors' stories

Source: http://www.deseretnews.com/article/...ors-still-dealing-with-aftereffects.html?pg=1


Polio bites back ? Decades later, survivors still dealing with aftereffects
By Wendy Leonard

Deseret News
Published: Wednesday, Feb. 3, 2010 7:14 p.m. MST

SALT LAKE CITY ? Frances Broadhead uses only one floor of her three-story home. Most of it is adorned with handrails to keep her from falling. Low-lying shelves help her reach the things she needs.

It's a lot different than when she bought the home. But that was before post-polio syndrome set in. Now she just takes things one day at a time.

Broadhead, 78, is one of about 750,000 seniors in America experiencing the aftershocks of a disease that doctors and patients knew very little about when it first emerged. And although polio has been mostly eradicated in the U.S., it still poses a health threat in certain locations in the world and among those not vaccinated.

In the hopes of learning more about the disease and its aftereffects, Becky Lloyd, a researcher with the University of Utah's American West Center, is collecting the stories of dozens of polio survivors like Broadhead. The study could help doctors in other parts of the world who are still battling the disease, and researchers here in the U.S. as they face new epidemics. Already, the study is shedding light on the long-term effects polio can have on survivors.
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"When it first broke out, they didn't know what caused it or really how to treat it," Lloyd said. Some people wouldn't let their kids go swimming, thinking the disease was transmitted through the water. "It's a lot like the outbreak of swine flu now. They didn't have a lot of the answers."

During one particularly virulent six-week period in 1955, more than 200 cases of the debilitating disease were reported in Utah.

"Once the polio was over, we never talked about it," Broadhead said. Her mother had died long before Broadhead started developing symptoms of post-polio syndrome, leaving her little information about the childhood illness she contracted in 1937.

"The only visual memory I have is of my parents tapping on the glass window of my hospital room," she said. "All I could do was wave to them." At the time, she was 6 and had to sit out on a year of school so she wouldn't infect anyone else with the disease.

"Everybody was terrified of polio because it had such disastrous effects on people," said Ronald Hanson, a former Zions Bank executive who also contracted the disease at age 6. After several operations and nine months at a hospital in California, Hanson was fitted with what he says was an "unsightly" and uncomfortable leg brace, which he wore until the eighth grade, when he threw it in the garbage.

"I got tired of wearing the thing," he said. For most of his life, "people couldn't detect that I had a limp

But when Hanson, 78, wore out his "good leg" and required knee-replacement surgery, the resulting hydro-therapy, he believes, overworked the leg afflicted with polio, putting him back into a brace that he's been wearing since 1999.

It took nearly 50 years for Broadhead to feel any symptoms of post-polio, or repercussions of the disease, coming on, and at first, doctors assumed rotator cuff surgery would solve the problems weakening muscles in her arm had caused. She later learned that polio had attacked 90 percent of the nerve endings in her body, leaving her still able to move, but taking every effort she has to complete even the simple chores.

Other symptoms of the nascent post-polio syndrome, which was first recognized in the 1980s and affects an estimated 60 percent of survivors, include unaccustomed fatigue, muscle weakness and atrophy as victims tend to age faster physically.

"My leg feels like it's 106," Hanson said. He "hits a wall" every afternoon and needs a nap to get him through the rest of the day but credits his strong, stick-with-it personality for being able to make it through.

"(Polio) didn't inhibit me from doing anything I wanted to do," he said.

For her part, Broadhead says she's learned to adapt. She carries stiff pillows that help to raise the height of chairs, making it easier to stand, with her everywhere she goes. She has to use one arm to push the other one high enough to shampoo her head in the shower. Her doctor has ordered breathing treatments at night because her chest muscles have a hard time helping her breathe normally.

It's been a while since she crawled up or down the home's two sets of stairs, leaving two-thirds of her home mostly untouched. The daily movements that involve getting dressed, folding laundry and preparing food, completely tire her out.

"I can't even open a pickle jar anymore," she said.

Lloyd has already interviewed more than a dozen survivors about the course, treatment and long-term outcomes of the disease. She hopes to obtain additional grant funding to carry the project further past this year, perhaps even making it a regional or nationwide collection. Upon compilation, the materials will be made available to other doctors, researchers and the general public through Special Collections at the U.'s Marriott Library.

The collection on polio will be part of more than 7,000 oral history interviews gathered by employees at the center on topics including ethnic populations and minority communities, Utah war veterans and environmental policy issues.

"This is a timely project," said Matthew Basso, the center's director. "Typical polio survivors are now reaching their 60s and 70s. It's important to record this information while we still can."

Polio study

Polio survivors, clinicians and others interested in the University of Utah research project can call 801-581-7611 for more information or e-mail Lloyd at becky.lloyd@amwest.utah.edu.

e-mail: wleonard@desnews.com

 

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Re: U.S.: University collecting polio survivors' stories

Source: http://www.nytimes.com/2010/02/03/health/03polio.html

For Some Survivors, Polio Won?t Fade Into the Past
By KIRK JOHNSON
Published: February 2, 2010

SALT LAKE CITY ? The polio virus, and its reign of terror in the American psyche, is faded history now. After a vaccine was introduced in the mid-1950s, millions of people sighed, turned the page and moved on. Many polio victims, often struck in childhood, tried to leave the story behind and forget, too.

?I worked alongside people who didn?t even notice my limp,? said Ronald S. Hanson, 78, a retired banker here who got polio at age 6, stunting his right leg but leaving him, he said, determined to live a normal life. ?I didn?t want them to notice.?

So when Becky Lloyd, a researcher at the American West Center of the University of Utah, started an oral history project on polio last fall, she imagined weaving a tapestry of memory ? a filling in of details about quarantines and rehabilitation units and hospital wards, with their rows of iron-lung breathing machines that became the most chilling symbols of the disease?s attack. Polio cases peaked in the United States in 1952.

But Ms. Lloyd soon found that polio?s past was not dead and gone. It was not even past. In all the early interviews, people talked about an after-echo legacy of the disease called post-polio syndrome that had come back to hit them in their 60s and 70s. Survivors who had battled through braces and operations decades ago wanted to talk about the present, Ms. Lloyd said, and the new battlefield they faced.

?Thirty, 40 or 50 years later, it?s like they?re getting the disease again,? Ms. Lloyd said.

Post-polio syndrome, first recognized by science in the 1980s, is not technically a disease ? no bacteria or virus causes it, for example, like polio itself. Rather it is more like a car?s transmission breaking down after too many years of wear and tear on the gears: battered muscles and nerves that are pushed through a lifetime of strain to overcome and compensate for polio?s debilitating effects simply wear out sooner, doctors say.

And now the advancing age of the polio generation ? an estimated 750,000 people in the United States ? is compounding post-polio?s reach.

About two-thirds of polio survivors are over the age of 64, according to Lawrence C. Becker, the author of a study by Post-Polio Health International, an advocacy group. As many as 60 percent, by some estimates, will experience a post-polio aftershock, moving into an old age that few had prepared for.

Some polios, as survivors call themselves, say that post-polio has refocused their minds on how the virus shaped their lives ? and sharpened their bittersweet memories.

?For years, I wouldn?t allow myself to think of polio,? said Virginia Lewis Hall, a retired teacher who grew up in a small town south of Salt Lake City and caught the disease at age 3, in 1949. ?I always said, ?I?ll just tough it out.? ?

Ms. Hall, 63, said the effects of post-polio, particularly a deterioration of the breathing muscles, which forced her to take an early retirement and requires her to be on oxygen most of the time, have deepened her understanding of the mantra her parents taught her growing up: that she could choose any road she wanted in life, but that her journey would be different because of the disease.

In an interview over her kitchen table, Ms. Hall held up a photograph, taken when she was 5 and recovering from bone surgery, encased in a white plaster body cast from neck to toe, legs stiffened and splayed by a rod between her ankles. In the picture, her older brother, John, in a chest-cast himself from a polio operation (he died of respiratory complications at age 52) holds her up from behind. Huge grins illuminate their faces.

?My dad built a stand so I could stand up ? it could hold me, and I could draw, and I could paint,? Ms. Hall said, describing her nine months in the cast. A love of art took root as she stood, otherwise immobilized but free to let her imagination roam. Today, water-color landscapes painted in retirement line the walls of her home.

Part of the problem for aging polio survivors is that, like World War II veterans or Holocaust survivors, their numbers are shrinking every year, which means that money for scientific research into post-polio is drying up, too.

Doctors with hands-on polio experience, like Jacquelin Perry ? 91 and still practicing at a rehabilitation center in California ? are disappearing even faster.

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Dr. Perry began working with polio during World War II, when she was a physical therapist for the Army, and she has seen some patients continually for 50 years or more, creating lifelong charts of their progress, and in many cases, she said, their decline.

Her conclusion about polio and age is that the people who worked hardest to overcome disability have in many cases been hit hardest by its second-wave attack, as over-used muscles and nerves gave out after decades of strain. Her observation is backed up by numerous studies.

?It?s overuse,? Dr. Perry said in a telephone interview. ?The people who tried hardest to be normal, and pushed hardest, have been hit more with post-polio.?

Some polio survivors call that the ?Type A? problem. Overcoming polio, they say, required immense work, if not obsession, to adapt undamaged muscles and nerves to carry the load. Mr. Hanson, for example, the retired banker, said his left knee, unaffected by polio but burdened for years from carrying most of his body weight, gave out about 11 years ago and had to be replaced. The polio-damaged right leg, meanwhile, became even weaker.

?We?ve followed a lifetime of saying, ?Push hard, keep going forward,? ? said Prof. Fernando Torres-Gil, a polio survivor and director of the Center for Policy Research on Aging at the University of California, Los Angeles. ?But now that?s an impediment to successful aging.?

Some people who have participated in the Utah project say that rethinking polio?s path ? and accepting that post-polio could shape the rest of their days ? has given them strength.

?I feel more in control,? said Fran Broadhead, 78, who got polio at age 6, in Alberta, before moving to Montana and later Utah.

Ms. Broadhead, whose childhood illness was relatively mild ? she was up and playing with friends a year later ? said she thought the weakness and fatigue that began hitting her in the last decade were mostly from polio. It is not a question her doctors can help answer, she said, since post-polio is rarely a formal diagnosis.

?It makes it easier for me to accept what I?m going through,? she said, ?and to teach myself to adapt.?