Tonight, the University of Pittsburgh will begin its celebration of the 50th anniversary of the Salk vaccine with a special reception for anyone who had polio or participated in pilot studies or national field trials of the vaccine. What follows are the stories of some of these polio pioneers.
DIANNE O'DELL
IN IRON LUNG FOR 55 YEARS; 'IT'S THE ONLY THING I KNOW'
Little Dianne Odell wasn't feeling too good. Her head ached, so the 3-year-old quit playing with the June bugs and went inside, straight up to bed in her Jackson, Tenn., home.
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| Helen Comer, The Jackson Sun via AP Former Vice President Al Gore kisses Dianne O'Dell on the head after meeting her at a fund-raising event for her benefit on Dec. 4, 2001, in Jackson, Tenn. O'Dell is believed to be the longest polio survivor inside an iron lung. Click photo for larger image. Polio: Taming the scourge / An index to the series Tomorrow: Why only a handful of drug companies make vaccines.
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Mother and daughter were up all that night. Dianne's temperature spiked into fever, her legs and head ached. A second doctor visit ended in a spinal tap, which confirmed a polio infection, and led to a trip to the hospital.
The staff told her parents to go home, that they couldn't see Dianne for two weeks. Her father rented a room in town, so they'd be nearby if her condition became more grim. And, as the night wore on, it did.
When her parents returned to the hospital in the morning, they found out their toddler could breathe only with the help of an iron lung.
Nearly 55 years later, O'Dell, as she now spells her name, still spends her days in the life-saving machine.
"It's the only thing I know," she said. "I'm comfortable with it. I've never had a bedsore, which is remarkable." Because she's immobile, bedsores are the first thing doctors ask her about.
Modern technology, like the headset she uses to talk on the phone, has made life a little easier and more enjoyable. But her paralyzed body is always cocooned in metal. With periodic whooshes, bellows push and pull on the air in the tube to do the work that her polio-ravaged chest muscles can't.
O'Dell used to leave her shell for a few hours at a time. Friends or family would push her wheelchair for a stroll outside, or take her to church a few blocks away.
One time, when she was 10, the power went out and her parents hand-cranked the pump on the iron lung for more than three hours because they had no backup generator.
Today, there's a spare machine in the carport. It may be needed for parts because the supplier, Murrysville-based Respironics Inc., no longer maintains iron lungs. A spokeswoman said patients with milder breathing difficulties might be able to use less cumbersome, even portable, alternatives. Several devices, like modern ventilators, use a positive pressure system to move air directly into the lungs.
About 40 people in the country still need an iron lung. Some use it only while sleeping. Others, like O'Dell, never leave it.
Despite the limitations, O'Dell's mother made sure she had as normal a life as possible. Friends were always welcome to visit. Weddings, receptions and baptisms were held at the house so O'Dell could participate.
She got her high school diploma and a scholarship, which she used to attend Freed Hardeman University for a semester. She lived with a professor and her cousin, who took notes at lectures and brought them back for O'Dell to study.
"It worked out like going to the classes," she said. The university awarded her an honorary degree in 1987. Using a voice-activated computer, O'Dell wrote a children's book called "Less Light" and is working on her autobiography.
She does have a few worries. Her parents, with whom she has lived her whole life, are getting older and the costs of caring for her are high. But a fund has been set up to assist her, and her network of family, friends and aides is broad.
"I've had as normal life as it could be," O'Dell said.
STACY SMITH
KDKA ANCHOR WAS UNABLE TO WALK UNTIL HE WAS 3 OR 4
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| Alyssa Cwanger, Post-Gazette KDKA-TV co-anchor Stacy Smith had polio as a child and still walks with a limp. Click photo for larger image. |
That's because childhood polio stole the strength from his legs, and he doesn't want his limp to distract viewers from the news of the day. Sometimes, people who see him walking on the street ask if he had a skiing accident or knee injury. No one guesses the real reason.
"I identify immediately with the pictures of children in the leg braces, children in the carts in the hospital," Smith said. "I went through that."
He was a 6-month-old in Shreveport, La., when he came down in the spring of 1949 with the disease that once was called infantile paralysis, even though older children were more likely to be affected.
His mother later told him that, initially, he was completely paralyzed.
"All I could move were my eyes," Smith said. As is typical, he got better. But, his right leg remained very weak and his left leg was only a bit stronger. He didn't walk until he was 3 or 4.
"I remember wearing the steel and leather braces that were hooked on the outside of the shoes," he recalled. "Now they're all cosmetic and they fit inside" the shoe.
Smith started school at the usual time. For four years, he attended what was called a "crippled children's school" in Muncie, Ind. Then his family moved to Anderson, Ind., and he entered fifth grade at a parochial school where he had to get to and from a class on the third floor.
"I had to make my way up and down the steps with everybody else in the same amount of time," Smith said. In many ways, that was good practice for the future, he added.
"Growing up, I played baseball and football and all those kinds of things. Couldn't run very well, but I still went out and played," he said. Now, even walking, particularly on Western Pennsylvania's hilly terrain, can be tiring.
"Was it better to never have known what it is to run, or is it better to have run and then lost it? I don't know," Smith mused.
Over the years, he has had more than 10 operations, often to improve the function of his stronger left leg, which powers his body.
"You just continue on and do what you can do," Smith said. "We find our limitations. When we find out something we can't do, we either find a way around it or we just don't do that."
RICHARD PIACENTINI
PHIPPS DIRECTOR WORE LEG BRACE UNTIL AGE 4
Richard Piacentini, executive director of Phipps Conservatory and Botanical Gardens, got polio in July 1955 when he was 8 months old, three months after the world heard the news that Jonas Salk's vaccine was safe and effective.
He went to the hospital with a fever and was so ill that he stayed a week. But no one thought of polio until months later, when they realized he couldn't walk.
"My parents were devastated, but they were incredible," said Piacentini, who grew up in Long Island, N.Y. "They took me to all kind of specialists and did thousands of hours of physical therapy on me, every single day, seven days a week."
Strangely, nine years later his younger brother also got polio, despite being vaccinated.
"The doctors were totally flabbergasted," Piacentini said. "They never really could explain it."
He wore a brace on his right leg until he was about 4, and had an operation to improve his leg strength when he was 11. He might limp occasionally now if he gets very tired.
As a youth, Piacentini was self-conscious because he wasn't very good at traditional sports. Then he discovered he had an aptitude for sailing, and the quiet, reserved teenager forged a new image of himself.
"On the weekends I was very popular as the guy who was winning most of the sailboat races," he recalled. "This was very important [because] it showed me that I did not have to be limited by polio."
Piacentini hadn't given his experience of the disease a second thought until he learned of the University of Pittsburgh's celebration of the 50th anniversary of the Salk vaccine.
"I'm so glad to see them honoring the people who were involved in this," he said. "It's great just to see it's almost totally eradicated now."
DAVID NIX
SON OF WATSON DOCTOR WAS AN EARLY 'VOLUNTEER'
An oft-told story in the Nix family is about the time that 7-year-old David tripped Dr. Jonas Salk and sent him sprawling.
His father, Dr. Robert Nix, was the medical director of the D.T. Watson Home for Crippled Children in Leetsdale.
After a 1952 study on polio patients from the Watson Home and the Polk State School in Venango County, Salk asked Nix and another doctor to recruit healthy children from their Sewickley practices for the next tests of the experimental vaccine developed by the Pitt team.
Nix, who was usually called "Chief," couldn't very well ask the parents of his young patients to do something he wasn't willing to do himself, so he signed up his own kids, Chip, 11, Eleanore, 9, and David.
David Nix, now 59 and living near Cleveland, said they were at the Watson Home by 8 a.m. every Saturday for what seemed like weeks. All morning, while other kids were out playing, they waited their turn in an old gym for Salk's team to draw their blood. Then they had a swig of warm pineapple or orange juice.
Young David, not known as an imp, must have built up some resentment that needed expression when a white-coated Salk walked by that memorable day.
"I stuck my leg out and tripped him," Nix said. "He went down. I thought I was going to catch hell."
Luckily for him, everybody laughed. But most of Nix's recollections of the Watson Home and its young polio patients aren't funny. Iron lungs, which he called "ghastly machines," were especially scary.
"You'd see these little heads sticking out of the tubes, which had to be 5 feet long," he said. "It was dreadful."
Betty Gundelfinger, who was the Chief's nurse for more than 40 years, had the task of inviting families from the practice into Salk's study.
"In the summertime, the parents were so frightened," she recalled. "They didn't want their children to be out in groups and in the swimming pools or in the theaters. They always worried.
"We had seen some of our patients come down with polio, so we were anxious to get in on this," said Gundelfinger, 79, of Moon. "When I started making the telephone calls to ask people if their children could get involved, nobody said no."
David Nix said he was proud of his father's dedication and his role in the development of the first polio vaccine.
"It didn't even occur to us how important it was until he died" in 1998, Nix said. "Dr. Salk should have gotten a lot of glory, but there were so many people who helped him who kind of fall through the cracks."
SHERRY MILLER BROWN
SAYS IT WAS THE PARENTS WHO WERE REAL PIONEERS
When June Miller got a letter from Dr. Jonas Salk about testing a vaccine to prevent polio at her daughter's school, she asked her family physician if she should let the youngster get the shots.
A day or two later, perhaps after he talked to Salk's colleagues at Municipal Hospital in Oakland, the doctor told Miller to put Sherry, a first-grader at St. Basil Elementary School in Carrick, into the study, and to encourage other parents to do so, too.
Miller spread the word, and families were soon consulting with one of the three physicians in the neighborhood. It turned out that children who were patients of the two younger doctors got the vaccine, but those who saw the octogenarian practitioner didn't. He had advised their parents against what he called "those crazy shots."
"My mother was always frustrated about that," said Sherry Miller Brown, now 57 and still in Carrick. As a child, though, she figured that the children who didn't have to endure the shots had parents who really loved them.
The nuns who taught first and second grade at St. Basil's marched the children downstairs to what Brown calls the "social room/cafeteria/bomb shelter" that had become "polio-shot central." Fifteen thousand Pittsburgh schoolchildren offered their arms not only for doses of polio vaccine, but also to give blood samples that were checked for signs of an immune response.
Brown recalls nurses in white caps swabbing arms with alcohol-soaked cotton balls and comforting weeping classmates.
"They took, from the crux of the elbow, these big vials of blood out," she said. "I remember kids fainting when they did that."
Years later, when her infant son was getting his own dose of polio vaccine, the oral Sabin version, Brown told her doctor that she had been in the original vaccine trials.
"Her reaction was, like, so profound, I was kind of shocked," she said.
She and her peers got to do something special and important, Brown said. "But really, it was the parents who allowed their kids to participate [who] were the pioneers, to allow their kids to do that."
CAROL McALLISTER
REMEMBERING FEAR THAT SPREAD THROUGH FAMILIES
In Port Jervis, N.Y., a half century ago, young Carol McAllister woke up one morning and discovered she couldn't swallow or turn her head. Her parents and grandmother were scared. Was this polio?
Concerns about spreading the infection were so high that a public health nurse came to her home to avoid taking the youngster to the doctor's office.
"It turned out to be a minor throat infection with swollen glands," said McAllister, now 57 and living in Friendship. But "the common feeling was if [polio] started in your neighborhood, if it came somewhere you were swimming, if it came into your school, everyone was at risk."
She was in second grade when the field trials of the Salk vaccine were conducted, after it had already undergone preliminary testing in Pittsburgh. In the 1954 national study, 1.8 million children at 217 test sites in 44 states were randomly assigned to get either the vaccine or a placebo, or get no shot and simply be observed.
McAllister's mother, Harriet, a seamstress and later a factory worker, thought the trial was important, and she talked about it with other parents in the blue-collar community.
Was it safe to inject an inactivated polio virus as a vaccine? Was it right to test it on healthy children?
Still, they wanted to end the scourge of polio. Harriet McAllister lent a hand when the trial came to the neighborhood grade school, and her presence and expectation of stoicism kept her daughter from crying when her turn with the needle came.
"To me what's amazing is the commitment to help in spite of the fear, in spite of the uncertainty, the lack of familiarity" with scientific studies, Carol McAllister said. Now a researcher and mother herself, she understands the quandary parents may feel when they consider enrolling their child in a trial.
Fifty years ago, on April 12, 1955, Dr. Thomas Francis of the University of Michigan announced the results of the national field trials: the Salk vaccine was "safe, effective and potent." The eradication of the polio virus and the crippling disease it caused had begun.
"I don't remember the announcement," McAllister said. "But I do remember my best friend got a placebo because she then had to go and get the vaccine."
McAllister, though, had received the real thing.
TED SHAFFER
Rotarian and wife help immunize kids in India
As a 19-year-old undergraduate at University of Pittsburgh in 1954, Ted Shaffer received a shot directly from Dr. Jonas Salk as one of the polio pioneers who agreed to test the experimental vaccine.
In February, Shaffer, now a semiretired real estate broker in Murrysville, took the role of vaccinator, giving hundreds of children the polio vaccine in a mass immunization campaign in India.
Shaffer, 70, a former Rotary district governor, was volunteering near Delhi with his wife Patricia, 58. They were there with more than 100 Rotary International volunteers.
For years, Rotarians from southwestern Pennsylvania have traveled overseas to help with vaccination efforts and to provide a morale boost to international health workers. (Dennis and Kathy Crawford, of Mars, for example, participated in campaigns in Nigeria and Niger over the past two years.)
Ted Shaffer was involved with Rotary before the organization took up the quest to eradicate polio, and in 2001, led a local PolioPlus fund-raising campaign that raised $5,000 through the sale of pins with Rotary's vaccination logo, a picture of a child opening his mouth to take drops of the oral vaccine.
Shaffer was eager to participate in India's vaccination campaign, which he believes will be successful in stopping transmission of the disease there this year.
Among their duties, the couple squeezed drops of the oral Sabin vaccine in the mouths of babies and young children at crowded booths, where armed guards controlled the lines.
"Our purpose was to show them we supported their work. 'We're here to help you in any way we can. We believe in this,' " Patricia Shaffer said.
A half century ago, when children were struck by polio just blocks from his boyhood home in New Kensington, his parents sent Ted and his two brothers to his grandparents' home in Williamsport, Lycoming County. Not all of the memories about this time were scary, however.
"I was so excited," he said about the stay with his grandparents. "They owned a candy and cigar store."
RON FORMOSA
CONQUERING IT ONCE, ONLY TO HAVE IT RETURN
Each day, he tried to add one more stride to the 30-step journey from the front to the back of the house. Leather-and-steel braces encased his legs.
"I had to learn to walk all over again," said Formosa, 61, of Chambersburg, Franklin County. He can't remember when he got rid of the braces, and for a while after that, he wore a shoe lift to correct the length discrepancy in his legs.
But then, "You're starting to look at girls and the girls are looking at you," he said, laughing. "The raised shoe's got to go!"
For decades, polio was just a dim memory for Formosa. He regularly worked out at the gym, priding himself on his leg strength. Known as a go-getter, he remodeled his homes, rode a motorcycle, built hot-rods. He and his wife have five children, 10 grandchildren and are expecting a great-grandchild.
About three years ago, Formosa noticed that he wasn't quite as strong as he used to be. Age, he figured. When he developed respiratory problems because of workplace mold, his pulmonologist conducted tests that suggested his chest muscles were weaker than normal.
The doctor also spotted something that a co-worker later told Formosa she wondered about, too. Whenever he arose from a chair, he'd use his arms to push himself up. He couldn't get out of the chair using just his legs.
Recently, he found himself occasionally tripping over his own right foot. He finally made an appointment with specialists at the John P. Murtha Neuroscience and Pain Institute in Johnstown after he fell in December.
"It was the third or fourth time I fell within the year, for no reason," Formosa said. "They put me through some tests and pretty well confirmed I do have post-polio syndrome."
The Johnstown clinic is one of three in Pennsylvania that specializes in the syndrome, which can strike people 10 to 40 years after their initial paralysis.
As many as 300,000 people, or an estimated one-quarter to one-half of the Americans who had polio, could develop post-polio syndrome. According to the National Institute of Neurologic Disorders and Stroke, the muscles that were affected by the virus can grow weak again.
Formosa explains it simply: "I lost a lot of nerve endings through polio and the ones that are left there are doing extra work. They are just pooped out and that's what the problem is."
His wife used to say he got more work done in a couple of hours than most people do in a day. But now, his legs tire within three minutes of walking, and the more he tries to do, the longer it takes to recover. He wonders if the time he spent at the gym was actually bad for him, making his muscles wear out faster.
He goes only to stores that have scooters available. He sits on the recliner and watches TV or reads while the Yorkshire terriers he can no longer walk keep him company. He hasn't been able to work since October, and is waiting for his long-term disability payments to kick in.
"I beat this once and then all of a sudden, here it is back," Formosa said. "They don't know why it comes back. They don't know how to stop it."
Formosa is wearing braces again. He wasn't eager to put them back on, but is pleased with them because they have made him more stable. He wishes his endurance would improve, too.
"Bottom line, it's still better than 6 [feet] below." he said, with a slight laugh. "You try to make the best of it."
Dr. William DeMayo, a rehabilitation expert at the Johnstown clinic, said findings from experiments on other neurological disorders can shed light on how to help today's polio survivors.
But the virus that causes the disease was eradicated from the United States in 1979 and is expected soon to vanish from the world, he said. That means post-polio syndrome's days are numbered, too.
And when that time comes, the only place to encounter the terrible impact of polio will be in the pages of history books.