University of Utah to collect the stories of polio survivors

From The Salt Lake Tribune in Utah:

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 (pictured), 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.