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Polio: The Death of a Disease

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Iron lungs and isolation Tales of the polio years

 

By Huntly Collins Inquirer Staff Writer February 23, 1999

 

They were summers of fear. All across America in the late 1940s and early 1950s, polio changed the face of childhood. Families fled the cities, swimming pools were closed, mothers Polio in America fretted that an innocent frolic in a neighborhood creek could paralyze their child for life. There was no telling who would be next. Myths about how people caught polio abounded. Some blamed flies, pollen, summer fruits. In fact, the polio virus, which lives only in people, was spread by contact with contaminated stools, often through water or food.

 

In the Philadelphia area, more than 1,000 children came down with polio during those years. Here are some of their stories.

 

The not-so-glamourous life of a poster child

 

From her hospital bed, Diane Kirlin couldn’t see the rows of iron lungs. But she could hear them – a great swishing sound just beyond her cubicle at Philadelphia’s Hospital for Contagious Diseases.

“When the nurses would turn one off, you knew that a child had died. Then they would roll the iron lung away,” she recalled. Diane was 4 in 1952, the peak of America’s polio epidemic, when she and a friend both fell ill after playing in a creek.

She was paralyzed in her arms and legs, and spent 159 days in the hospital, at Front and Luzerne Streets.

Diane Kirlin Murphy, 51, of Erdenheim, holds a 1955 photograph of herself as a March of Dimes poster child (Peter Tobia/Inquirer)

At age 6, Diane became a March of Dimes poster child. With her long ringlets, frilly dresses, and custom-made white shoes, she was a picture-perfect little girl – in braces and crutches. She was photographed with Phillies pitcher Curt Simmons. She went on the Chief Halftown television show. She pleaded for more donations to support research and medical care for

children like herself. But behind the smiling face, she seethed. “My mother loved it,” Diane recalled. “She loved showing me off. I didn’t. I wanted to be just like everybody else.” In 1956, Diane was sent to Philadelphia’s Shriners Hospitals for Crippled Children, then on Roosevelt Boulevard, for corrective surgery on her hips and knees. She did not leave for seven months. When she arrived, she was stripped naked and scrubbed so hard it hurt. No visitors were allowed, not even her parents. On Sundays, at the appointed time, she went to the window of her fourth-floor room and looked down. There, waving up to her, were her mother and father.

The hospital did allow mail. Diane remembers her birthday and Christmas cards arriving wet and limp, as if they had been steam-cleaned first. After she was discharged, Diane ended up at the city’s Widener Memorial School for Crippled Children at Broad and Olney. Most of the city’s public and parochial schools would not enroll children with polio. Each morning the big orange school bus pulled up to Diane’s home in the Mayfair section of Northeast Philadelphia while her brother and sister walked to nearby Catholic schools. “All I wanted to do,” she said, “was wear a uniform and go to school with my brother and sister.” The closest she got to that was her First Communion. St. Matthew’s School, where her brother was enrolled, allowed her to take catechism classes. A neighborhood boy pulled her up to the school on Cottman Avenue in a wagon. “I felt so proud because I was like everybody else.”

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Philadelphia Online

Polio: The Death of a Disease

Decades later, a trauma revived

For polio survivors, a syndrome brings more than physical pain.

By Huntly Collins Inquirer Staff Writer February 24, 1999

Marty Abelson sat on the edge of an examining table at Albert Einstein

Medical Center in Philadelphia and pleaded for reassurance that he was not imagining things.

A year earlier, he could jog five miles around his home in Mechanicsburg, Pa. Now, after mowing his lawn, he was lucky to be able to put one foot in front of the other.

“It’s not that I’m being a wimp, is it?” Abelson asked orthopedic surgeon Mary Ann Keenan. “I’m not making anything up? This is really happening?”

Marty Abelson holds a picture of himself This was Abelson’s second visit to one of the finishing the Pittsburgh Great Race (10K) nation’s premier programs for polio survivors, in 1990. It’s now impossible for him to run because of lost strength in his legs.

attracting more than 400 patients, some from as far away as Hawaii. More Photos (Peter Tobia/Inquirer)

Yes, Keenan told him, the fatigue was real, the result of muscles and nerves working on overload for decades. “It’s like you are trying to run a marathon every day. Even marathoners don’t do that.”

Abelson, 47, is one of thousands of American polio survivors who have developed a medical condition known as post-polio syndrome. The symptoms, which do not appear until decades after people have recovered from polio, include weakened muscles, leg and shoulder pain, and exhaustion. Like most of America’s 400,000 to 600,000 polio survivors, Abelson thought his problems were behind him after he recovered from his childhood bout with the crippling disease.

Post Polio Syndrome Time and two surgeries seemed to heal his paralyzed leg, and he went T-1 connection on with life – college, marriage, two children, and a demanding job as

28.8 connection a pharmacist. But now his leg muscles were weak. His knees sometimes buckled, sending him crashing to the floor. His shoulders ached. Just walking through a mall was exhausting. The problems – which came out of nowhere – forced Abelson to make dramatic changes. He gave up the people-oriented pharmacy job he loved because he had to stand all day. Now, he had a desk job reviewing insurance claims for prescription drugs.

He had begun using a leg brace and a cane. Soon, he feared, he would need a wheelchair or motorized scooter, “I feel like I’m on a roller coaster going down,” Abelson told Keenan as he sat in his T-shirt and boxers during a checkup last fall. The hardest part is, I used to be the one to fix the problem. Now, I am the problem.” belson and others who are twice victimized by polio are a poignant and costly reminder of the toll of disease and the miraculous benefits of vaccines.

Even if the World Health Organization is successful in its drive to eradicate polio from the planet by the end of 2000, millions will cntinue to suffer from the late effects of polio decades from now.

When polio survivors first began complaining of these muscle problems in the late 1970s, doctors often dismissed them as hypochondriacs. Few physicians had a firsthand knowledge of polio. The disease, conquered by the Salk and Sabin vaccines in the 1950s and ’60s, was no longer taught in most medical schools. Also, doctors had trouble distinguishing the symptoms of these older patients from normal aging. But since the 1980s, when post-polio syndrome was named, the medical community has gradually come to accept the disorder as a bona fide neurological condition. Doctors estimate that 20 to 40 percent of people who had acute paralytic polio develop problems later on. And new research now points to a possible explanation – overuse of both the muscles and the nerves that activate them. “It’s still a theory, but we find that it’s confirmed by the experience of our patients,” said Dr. Alberto Esquenazi, a rehabilitation specialist at Einstein’s clinic. There is no definitive test to diagnose the disorder and no effective medicine to treat it. But surgery, strengthening exercises, and the use of braces, crutches, wheelchairs and scooters can help patients lessen the strain on muscles. For many, however, that brings back the nightmare of their past. “We have boxes of tissues in each examining room,” Esquenazi said. “’Emotionally, it’s very hard for people to accept.” aul Radvansky was slouched in a chair when Keenan walked into the examining room nie a to greet him. He was a new patient, so the doctor wanted to hear his whole story. “You’re going to get me out of the nursing home, aren’t you?” Radvansky asked Keenan. “I want to go to work so bad.” Radvansky’s situation was complex. He contracted polio in 1945, when he was 7. With braces and surgery, he had recovered, but his spine was left with an extreme curvature,

known as polio scoliosis. That was not his only problem. Radvansky had been in and out of state mental hospitals much of his life with manic-depressive disorder. He landed in a Doylestown nursing home last spring after suffering a severe bout of depression over his physical condition. It was getting harder and harder to walk, he said. “These shoes came from Kmart,” Radvansky told Keenan as he pointed to his white tennis shoes. “‘They’re supposed to be sort of orthopedic.” Keenan had Radvansky walk barefoot down the hallway, observing his contorted spine. She pushed and pulled various muscles, asking him to push and pull back. Then she ordered X-rays. The results were not good. Radvansky would need braces on both legs to stabilize his body. “Oh, please don’t!” he yelled. “Don’t! You know what’s going to happen? You’re going to put braces on my legs and I’m going to quit.” Radvansky explained that he had been getting better and had begun taking short walks every day up and down a hill near the nursing home, pushing a wheelchair in front of him for support. His hero, he said, was Oliver Bierhoff, the German soccer player. He had cut out Bierhoff’s photo from Sports Illustrated and pasted it near his bed. “‘I said to myself, This is your role model each and every day, every time you go up and down that hill.’ Keenan tried to assure Radvansky that he could still walk with the braces, that they were lightweight plastic, not the heavy metal braces that he had as a child.

Esquenazi, who had come in to consult, was also a soccer fan. “Did you know that Bierhoff hurt his knee and wore a brace?” he told Radvansky. “He used a brace so he could protect himself. You have to think about it the same way.” There is no better athlete than the polio patient,” Keenan chimed in. Radvansky grew quiet, as if weighing his options. Esquenazi left and came back with something under his arm. “There’s a brace,” he told Radvansky, thrusting a piece of smooth white plastic in front of him. Radvansky was stunned. “’It’s like a big shoe,” he said. “Wonderful, wonderful. I’ll buy that.” The Einstein doctors liken polio to a si w. Jackson Pollock painting, with oil splattered on canvas in no obvious pattern. Most people who contract polio virus don’t even get sick, a few, however, develop disabling paralysis, and some die. No one knows why. Similarly, there is no predicting which muscles will be affected or how severely. It could be the arms, the legs, the diaphragm or some combination At Albert Einstein Medical Center’s post-polio clinic, Dr. Alberto Esquenazi and Dr. Mary Ann Keenan help Barbara Goldstein, 64, to her feet after an examination. More Photos (Peter Tobia/Inquirer) Post-polio syndrome doesn’t hit everyone who had polio. It seems to develop in those who were most severely paralyzed. In recent years, some scientists have come up with a possible explanation: Once the polio virus gets into the body, it travels to the spinal cord, where it attacks large numbers of motor neurons, the nerve cells that activate voluntary muscles, such as those in the arms and legs. Some neurons recover from a polio attack, but others die, causing atrophy of the muscles they control In a process called “remodeling,” the body has an ingenious way of repairing itself. The neurons that recover from polio sprout new growths that reach out like tentacles to the muscle cells that were left stranded when their own neurons died.

These stranded muscle cells then rely on the recovered neurons to get the signals they need to function. As a result, a smaller number of motor neurons shoulder the work previously done by many. After years of expanded duty, these neurons begin to break down.

Some scientists now believe it is the breakdown of these overtaxed neurons that triggers the muscle weakness. “Post-polio syndrome is not a reinfection with polio virus,” Keenan said.

The surgery that Keenan recommends to patients is aimed at relieving a number of problems.

Many patients, she said, have torn their rotator cuff, the tendons in the shoulder, after years of using their arms to push up out of chairs. A relatively simple operation can repair the

damage. Another surgery is aimed at correcting a common foot deformity that can cause patients to fall. Doctors make small incisions in the Achilles tendon, which can then stretch and allow the foot to be flat on the floor. The braces – handcrafted in a hospital workshop that resembles an artist’s studio – support weakened muscles so patients can conserve their energy.

But along with all the external supports, patients are asked to make a monumental change in their mental attitude. Instead of trying to do everything, they are urged to slow down and make judicious use of their strength. “‘I tell each patient: You have an energy budget,'” Keenan explained. ” ‘Where do you want to spend it? In the parking lot trying to get into the mall, or getting around your yard?’ It isn’t just the doctors who hand out advice. Patient volunteers act as peer counselors, sharing their experiences with newcomers. “I’ve been here eight years, ever since the clinic opened,” said volunteer Ann Silcox, as she buzzed up and down the hallway in her motorized cart. As a young girl, Silcox spent years at the Home of the Merciful Saviour in West Philadelphia, a residential facility for children with polio. Silcox had brought in a big platter of what the doctors call ‘polio food” – watermelon, low-fat angel-food muffins, and rye bread topped with cucumber slices. Because they can’t do vigorous exercise, many post-polio patients become overweight. The polio food is meant to encourage low-fat snacks. The volunteers also run a support group, in which post-polio patients can work through what may be years of denial about their disability. Like President Franklin D. Roosevelt, who did his best to hide his paralysis from the public, people with polio were supposed to be strong. If they tried hard enough, they could get out of their wheelchairs, throw away their braces, and be just like everybody else.

And many did. They became super-achievers who went on to college in disproportionate numbers, entered the professions, and developed reputations for excellence in virtually every

field. But it came at a cost. “Most patients have the traditional view: ‘No pain, no gain,’ ” Esquenazi said. “We spend years trying to turn this around.” Hill Lambert arrived for his clinic appointment with a long list of questions. His wife, 11. 1 Eileen, a former teacher, sat at his side taking careful notes. “‘She’s my secretary,” “. Lambert joked. A few months earlier, Lambert, 58, learned that he needed corrective surgery on his right foot and that he would have to wear a brace for the rest of his life. He thought he had rid himself of his brace nearly 50 years ago.

Even more troubling were the lifestyle changes the doctors recommended. Instead of walking a mile, he was to walk only half a mile. He should limit climbing stairs to once or twice a day. He had to sit, not stand, at his workbench. This for a man who loved spending hours in his basement playing with his model railroad; who completely renovated his Phoenixville townhouse, doing all the demolition, carpentry and electrical work himself, and who spent many a weekend afternoon going on historic walking tours with his wife. “It just caught me out of the blue that we were going to face so many changes,” said Lambert, a retired draftsman.

Now, before he went ahead with the surgery and brace, Lambert wanted a few answers: Would he still be able to drive? How about “potty calls” in the middle of the night? What about bathing?

Keenan assured him that, with a few modifications, he could do all of that.

After methodically working down his list of questions, Lambert came to the big one.

“What are we looking at, totally, best guess, in 15 years?” he asked. Keenan answered with the only information she knew for sure: “Our goal is to keep you active and functioning.”

© 1999, Philadelphia Newspapers Inc. All rights reserved. Any copying, redistribution, or retransmission of any of the contents of this service without the express written consent of Philadelphia Newspapers Inc. is expressly prohibited.

Daily Mail 27 August 1998 David Brown

I thought I’d beaten polio … but now I a face the rest of my life in a wheelchair

Daily Mail, Tuesday, August 25, 1998

THE polio epidemics of the Forties and Fifties are distant memories since the introduction of mass vaccination against the disease. Many who did get it fought to regain their mobility and, eventually, came to believe they had rid themselves of the virus. There are at least 50,000 British polio survivors – including Lord Snowdon and singer ian Dury–but many are now finding that polio has come back to haunt them. Peter Jay, who is married with three children and runs his own picture-framing business near Kings Lynn, Norfolk, lives with post-polio syndrome every day. Having thrown away his callipers when he was 14, at 52 he faces a future in a wheelchair. Here, he talks to JACKIE SPRECKLEY. ABOUT ten years ago I realised that something was seriously wrong. I was at work when suddenly my leg gave way and I fell into a stack of glass.

I’d already been feeling increasingly exhausted and . had pain in my legs, lower back and shoulders, but this fall frightened the life out of me. My doctor referred me to a reha bilitation specialist, who said quite bluntly that my muscles, joints and ligaments were over used and that I’d have to take it easier, even go back to wearing callipers. Otherwise, she warned, I’d soon be in a wheelchair. I was devastated. Like most of, told: ‘Get up and go! Use it or lose it!’ That made me a fighter. So to. be told, all those years later, that. the physical gains I had won were

It took all the summer holidays. I lived just under three miles away now slipping away was hard to from this new school. So I missed still had callipers but managed to face. I’d had no idea at all about ride with one pedal and a fixed a further term while my parents post-polio syndrome.

wheel. After that I never looked battled to get transport for me. I was three when I caught polio

back. I could roam the fields and Eventually Dad wrote to Rab in 1949. I ended up paralysed from woods around our village – the Butler, our local MP, and within the neck down, lying flat on my freedom was wonderful. Until days à taxi was laid on — a beau back in a cast for nearly 18

then I’d either been pushed in the months. There were 11 children in Lagonda owned by the man wheelchair or carried on Dad’s who ran the local bus company. the ward, and of the four who shoulders. I can remember going to school didn’t make a complete recovery, I down the old A11. That was the Even so, I wasn’t allowed out on got off the lightest. Even so, my. left leg and the lower half of my wet days because you only got one-tirst time I’d ever travelled at pair of surgical boots which had to right were seriously weakened. 100 mph! last a year. Mum would have tears Gradually I began to recover My legs slowly got stronger until until I was able to stand in a walk in her eyes as she stopped me I was 14 and could throw away my frame. But even after being from playing outside, but we callipers and boots. That was, I still faced a night couldn’t risk ruining my shoes. great, because now I could wear le year of painful physiotherapy Eventually she bought me some baseball boots and jeans just like apy and hydrotherapy three times old-fashioned galoshes. They were other teen-agers. My strong arms, a week. far too big and would trip me up, right leg and back compensated I wore callipers and heavy at least I could go out and feel for my left leg. From then on, boots, and had to sleep in like a normal boy.

apart from being unable to run, polio wasn’t an issue. splints. My legs would get twisted in bed because my body moved I left school at 15, trained as a but my legs didn’t. I’d have to call

hairdresser and opened my first out for Dad to unravel them. THEN the operations shop in Stansted, Kent, when I When I finally got to primary started. By the time was 17. I had no worries about school, after missing the first I was 12, we worked being on my feet all day but Mum Polio victim Peter Jay: He now faces a daily battle to stay mobile year, I had one of those big old out that I’d been in bought me a barber’s chair with a fashioned wheelchair. The older

hospital for just over swivel seat on the back for when Kings Lynn, Norfolk, and raised chin tucked in. I can’t eat floating boys used to push me to lunch, one-third of my life. we were busy and I was tired. our three girls, Clare, 23, Annie, 19, solids, such as cornflakes in milk, which was in the village hall. I found secondary school I married Serena when she was and Abigail. 17. The business went because they make me choke. But after so long in hospital, I absolutely exhausting – all that 18 and I was 23, and bought our well, we paid off our mortgage and This could be life-threatening, so I first house, a beautiful cottage built our own bungalow. walking between classes. I was loved being back home. I was really have to take care. with a 100ft lawn. The only prob I have two full-length callipers late to every lesson, no matter nursed so well by Mum, and my It was a few years later that I lem was finding a motor mower and can’t walk far. When I was first younger sister was my legs. I’d sit how I hurried. It was all terribly started to get problems — severe stressful. that would go slow enough for me. diagnosed with post-polio syn in front of the fire and she’d run pain, overwhelming fatigue and around getting my toys, anticipated, I could still walk five or six Then the three-day week was So my parents looked for a

weakness. I feared the worst, introduced. We sold the barber’s because my dad and grandad had miles. Now I can’t walk 100 yards. my every want. smaller school. Unfortunately the She actually taught me how to I’ve got a manual wheelchair but shop and I got a gamekeeper’s job both died young of cancer. The limit in those days for school find it difficult to use because I get ride a bike, when I was about ten. on a magnificent estate in Here- last thing I expected to be told transport was three miles and we. I worked 18 hours a day was that my problems were con

a lot of pain in my shoulders. I’ve rearing pheasants, partridges and with polio. bought a second-hand power one mallard. I was in my 30s, as fit and and it probably won’t be long strong as I’ve ever been. before I have to use it all the time. Part of it, I’m sure, was that I But I look at it this way: a wheel DR JOHN SHNEERSON, Director Impulse travels down the nerve will give me mobility and allow me wanted to prove I could do every UCH a diagnosis made to get out and about – just like fibres, they have to do five or ten of Respiratory Support at thing, despite having had polio. In me very depressed. I was times as much work and supply a Papworth Hospital, the early days, polio patients were my bike did when I was ten. in my early 40s and the bigger group of fibres. After 35 or 40 Carnbridgeshire, says: set near impossible standards of

ng me doctors were telling me I thought I’d beaten polio once WITH post-polio syndrome, the

performance during their treat and for all when I was a child, and years they just wear out and die. that I had to take early nerve fibres which regrew after the now I’m having to fight all over This causes new weakness and pain, ment, and I think most of us have retirement. It took me a long time maintained that attitude ever to come to terms with that. again. Whatever I do, I have to and if the breathing muscles are acute illness are dying back since. We didn’t consider ourselves Then two years ago I started affected, patients can’t breathe give it my all. That’s what being a prematurely. The reason for this disabled. If you survived you got choking at night because I could und polio survivor is all about. appears to be because they grew in properly when they are asleep. better — it was as simple as that not breathe. It seems my throat MORE information, including a an unusual way as the patient About 60 pc of polio survivors run in Having got gamekeeping out of muscles and some chest wall mus- video called Living With The Late covered all those years ago, and to these problems, but there is a lot my system, Serena and I decided cles have got weaker. Now I attain Effects Of Polio (£7.50 inc p&p), is d to supply a much larger number patients can do ta help themselves, to settle down and start a family, only the lightest level of sleep, available from The British Polio of muscle fibres than normal as they in particular building in rest periods For the next 22 years we worked which leaves me exhausted. Fellowship, Eagle Office Centre, did the work of those destroyed by during the day to cope with the hard to build up a picture-framing I also have to eat differently. I The Runway, South Ruislip, Mid the polio virus. So every time a nerve fatigue and weakness. business in Sutton Bridge, near chew slowly and swallow with my dleser

ELECTRONIC MAIL&GUARDIAN Johannesburg, South Africa. December 9, 1997

Polio’s delayed second strike

HEALTH

THAT forgotten disease polio is striking a second Forty or fifty time at its victims of the past. Forty or fity years years after

after surviving childhood polio, victims are childhood polio, experiencing “post-polio syndrome”. victims

The symptoms polio survivors are now, some forty encounter their

or fifty years later, experiencing are burning pain, disease once

muscle weakness, chronic pain, breathlessness, more in a

fatigue, lack of concentration, choking, difficulty different and in swallowing, insomnia or sleep disturbance, little understood dyspnoea during excercise / general dyspnoea and form called

swelling of feet/legs. post-polio

After eleven months and seven different specialists syndrome. Now I have finally found out what is wrong with me – a South African with the help of the Internet and an eighth association has specialist. I am suffering Post-Polio Syndrome, as been set up to

are thousands of South Africans and Africans in

neighbouring countries. help survivors, says organiser

There are thousands of specialists in this country PRISCILLA who have no idea whatsoever of Post-Polio WEBSTER syndrome. Most are too young and the others have

not looked into the subject.

There are some who still remember the flu-like symptoms of the virus which left so many totally or partially paralysed after being in an iron lungs for months on end and having countless operations, physiotherapy, swimming lessons and excercises.

Now, an average of 40 – 50 years later those neurons are worn out.

Although Post-Polio Syndrome is not contagious, people who have it should not expect to improve but should only attempt to preserve what strength they have left.

CYBERSPACE

A support system will play a key role in treating the syndrome because patients are in the best position to tell other patients how to eliminate the stress and wear on muscles that have been overworked for decades. People have to learn to slow down.

• Polio Survivor’s

Page Post-Polio Syndrome

We who are polio survivors are no longer those cute little children who wore callipers or who were wheeled around in wheel chairs. In fact no one gets excited about us at all and it is to this end that we are going to have to ‘get excited about ourselves’ and live our lives with support and encouragement. For this reason, a South African Post-Polio Syndrome Association has been formed.

There will be chapters in all provinces where PPS sufferers can get together under the auspices of the Association.

The primary treatment is modification of your lifestyle. People with PPS also need to learn to regain their dignity as normal human beings and learn to trust those who are trying, in good faith, to help them. That in itself can be a monumental task.

You do not need to be happy about your condition but you must accept it. There is no need to wallow in self-pity because there is too much to be done.

All polio survivors interested in joining may contact:

Priscilla Webster The South African Post-Polio Syndrome Association

Newspaper clipping Daily Mail 22 September 1997

Ann Goulding

Saga Magazine August 1996

Polio Survivors Tell How They Have Fared

Our earlier article, but many others disclaimed any linger ing problems with disabilities.

Mrs Doreen Mackie summed it up nicely when she said, describing herself and her daughter-in-law, also a polio survivor: “The disease has not stopped either of us from leading a full and varied life. As for this Post-Polio Syndrome, I think we’ll just forget about it.”

ideal, but it was discontinued.” Last year Marks & Spencer did the “best and cheapest” but, sadly, it is out of production. “Shoes with the type of heel I require are impossible to find. Suggestions that the heel can be built up are useless – it throws out the balance of the arch.”

Can Mrs Watkins get a shoe to fit? “Any help will be welcome,” she says. Some readers felt they were suffering from “Post- Polio Syndrome”, covered in was one of the first polio patients to have a limb lengthened by breaking a bone. Mrs L. M. Sharp of Ilkley, who is 90, typed her letter telling us of her experiences with polio, known as Infantile Paralysis when she suffered from it aged three in 1909. When she finally started school, she writes… “I remember being terrified of meeting people as I had been isolated for so long.” In 1924 an orthopaedic surgeon operated to relieve her disabilities. “It was very painful,” she says, “my legs were cut from ankle bone round the back of the leg to the other side of the ankle and knots tied in the tendons at the back of the leg to give me more elasticity in walking. It improved my walking considerably and I could do without the calipers.” A few years ago a consultant told her that this technique had not been improved upon and was still used. How many long-term survivors of polio are there in the UK? When I asked the question in the May issue for news of the oldest survivor I did not expect the hefty postbag I received – 145 letters! It seems that one of the most disabling illnesses this century has been bravely borne by many people, and some have made it into their nineties.

The oldest polio victim we have heard about is Mrs Jessie May Frean, who is the mother of reader Dr David Frean, of Lichfield, Staffordshire. Mrs Frean is nearly 104. She was born in Sydney, Australia, in 1892 and became ill with polio when she was five years old. She lives in her own home in Pretoria, South Africa, and carers send detailed reports by E-mail to her son in England. Dr Frean and his wife Margaret have just visited his mother and report her in good health. “She made a complete recovery from polio and did not suffer much disability,” says Dr Frean. The oldest survivor living in the UK that we heard about was Mrs Daisy Stemp, who is 99. A friend wrote to say that although widowed and now frail, she still knits coloured blankets for orphanages in developing countries. Some interesting stories of medical treatment emerged from readers’ letters. Mrs Eileen Allen of Pontefract, West Yorkshire, believes she BABYSITTERS BEWARE Reader Jo Smith, a nurse and health visitor, has a word of warning for babysitting grandparents who may have to change the nappy of a newly immunised baby. “They are exposed to live vaccine if they are changing a newly immunised baby,” she writes. The danger of contracting the disease this way can be removed by wearing protective gloves.

readers have mastered a variety of aids for the disabled, but built-up shoes can be a problem. Mrs Joan Watkins, of Swanage, who believes she had polio as a child although it was never properly diagnosed, has tried to avoid the surgical boot but cannot find an attractive shoe which gives her some lift. “I persevere trying to find suitable shoes with a two-and a-half-inch heel,” she writes. “There was a Hush Puppy style in the 1980s which was BRITISH POLIO FELLOWSHIP The British Polio Fellowship is the only national charity caring soley for people living in the British Isles who have been disabled by polio. You can contact them at Ground Floor Unit A, Eagle Office Centre, The Runway, South Ruislip, Middlesex, HA4 6SE. Tel: 0181 842 1898. Fax: 0181 842 0555. If writing for information, please remember to enclose a stamp for your reply, they are a charity. saga MAGAZINE

Saga Magazine April 1996 APRIL 1996

Polio Awareness

You may have consigned relieve the poliomyelitis to the back problems of your memory. That faced by was one of the success stories those disabled of immunisation, wasn’t it? by polio.

It was. After the introduction of a polio vaccine by Dr disease has been the so-called Jonas Salk 40 years ago, this “Post-Polio Syndrome” which horrifying disease lost its is thought to afflict survivors, power. In Britain high levels of making their later years more immunisation meant that disabled. i S of polio plummeted Medical opinion is divided from nearly 4,000 in 1955 to 20 on the existence of a syn between 1985 and 1991., and critics of it believe

But polio still has its dark the signs of deterioration in side. In 1991 13 cases of polio some survivors are due to nor were recorded in the UK. The mal ageing. following year there were 19 The Fellowship bulletin more. Another cruel legacy of the

recently carried out a survey of People coming into Britain its readers to find out if there from countries without  are any recognisable changes programmes  to health in later years. These ted for some of these cases were some of the main points and some were related to the of the survey: vaccine itself, which carries a very slight risk – not to the per- • Overwhelming fatigue is son vaccinated, but to others the most common and often after the virus has gone the most debilitating through the body. One man. contracted polio from a baby’s • It is highly likely that nappy after the child had been some deterioration over and vaccinated.

above normal ageing will But the saddest sequel of occur to those who had polio early polio epidemics is the earlier in life. survivors are stil There is evidence of. Some polio victims are still deterioration in the breathing kept alive in respirators, others muscles controlled by are disabled. action. It is for them that the O Hard exercise might do British Polio Fellowship has lasting damage to muscles designated 1996 Polio already weakened by the Awareness Year. National effects of polio. events are planned throughout O Recovery times after rel the year to highlight the work relatively mild illnesses are excess of the Fellowship in helping to. The average age of people responding to the survey questionnaire was 60.4 years for women and 59.6 years for men. In total 674 people were aged over 60.

From 1912, when polio was first notifiable in England and Wales, cases rose slowly. There were never more than 1,000 cases reported each year – until 1947, one of the worst epidemic years which saw 8,000 cases.

During the next decade there were repeated epidemics with about 4,500 cases a year. Between 1947 and 1958, 52,514 people caught the disease, and from 1912 until the Salk vaccine was introduced, 80,000 people had contracted polio.

Author John Neville Walsh is writing a book telling the story of people whose lives were affected by polio and that medical monster, the iron lung. “There are still a number of people,” he says “that rely on the iron lung to keep them breathing and alive.” Mr Walsh is keen to hear from any Saga readers who have stories of survivors, among their family or friends, who have been in an iron lung. Mr Walsh can be reached at 8, Folkestone Court, Langley, Berkshire, SL3 8LX. Telephone 01753 582208. Who is the longest survivor of polio in the UK? There is one report of a lady of 83, still alive, who contracted the disease at three years of age. If Saga readers know of any long-time polio survivors, please write to the medical editor, Judy Kirby at Saga magazine, Saga Publishing, Middelburg Square, Folkestone, Kent CT20 1AZ.

Lord Snowden

the daily telegraph 30 October 1995

 

THE DAILY TELEGRAPH

Despite poor health and the fear of recurring polio, Lord Snowdon still works at a prodigious rate- and finds time to campaign on behalf of disabled people.

He talks to Lynn Barber

LORD SNOWDON is of an age, 65, when most photographers would be hanging

up their Hasselb lads or pensioning off their Pentaxes. Instead, he has just produced an enormous body of work-a 56-page celebration of British theatre – for the November issue of Vanity Fair magazine. It entailed 85 sittings and included almost all the big names of British theatre, from grand old knights such as Sir Alec Guinness and Sir John Gielgud to hot new talents like Julia Ormond and Ralph Fiennes. Many of these portraits are elaborately staged, with props and costumes and fancy locations, and most photographers would count it good going to shoot three such sessions a week. Snowdon, over the summer, was often shoot ng three a day — or even a night, when he had to catch his stars after the theatre. Snowdon is by no means fit, and worried about a possible recurrence of what he calls “boring polio”. He contracted it at 16, when he was at Eton, and spent six months in the Liverpool Royal Infirmary. It left him with a withered left leg, one inch shorter than the other, which always meant that he walked with a slight limp. Now he limps more markedly and uses a walking stick. “I’ve never been very good at any sort of acrobatics or walking, but I Business as usual: Lord Snowdon’s recent work has seen him clambering on to Westminster don’t have to be. I’m not very good at carrying things well I can’t. Boring polio. I don’t carry anything really. For one reason, if I fall down I break the camera, so it’s very expensive!” He has to sit if he is doing a long photo session, although inevitably it slows him down.

studio cloakroom – photo pulling strings. (This is any questions. So after we became Has his polio come back? graphic awards and citations cause of grief to editors, who have admired the haunted Mmm. I read about the MP for this and that, honorary imagine that he can just ring house peepshow, and the Wha (Julian Critchley] and it does degrees, his GCVO, two a chum to fix something He chairs he designed for the should come back when you’re Emmys for television docu- has never said a word about Investiture (“I saw one in a his la about 60 or something.” <mentaries which he sprayed his marriage to Princess catalogue the other day going graphs In Critchley’s case it has black because they Margaret; or divulged any for £500!) and the model of ion, £ confined him to a wheelchair looked so vulgar”.

royal tittle-tattle whatsoever the folly he is building in the much But Lord Snowdon prefers I remember thinking in The only faintly royal country, and the Snowdon his w not to dwell on it—”It’s such 1961, when he was created I got from him was that crystal ball watch, and the “The

an increase is Snowdon. now.

— But Lord. Snowdon prefers I remember thinking in The only faintly royal country, and the Snowdon his w not to dwell on it – “It’s such 1961, when he was created I got from him was that crystal ball watch, and the “The a boring subject”. Anyway it Eari of Snowdon, “now corgis.

fountain and didn’t stop him clambering graceful that he should get a Nowadays, in his tweed house he has already built in on to the Palace of Westmin. peerage just for marrying jacket and cavalry twill trou. the back garden, I plonk my get,” roof to photograph Princess Margaret!” but he, he looks more the earl self firmly in an Investiture through Glenda Jackson or up has certainly earned it since than the.

chair and refuse to you g London Zoo’s Mappin Ter. notably through his work for pher. It is a very budge.  fortunately devoid of disabled people. He still prefers McCo polar bears – to photograph He remains very much per. telling stories to ton in

Brian Blessed. sona grata with the Royal narfon Castle, he good at answering ques. tury ( He could have refused the Family and still takes photo. twinkled in his carrying– I particu- youVanity Fair assignment of graphs for them. Even his elfin green jump liked one the n course but he wouldn’t divorce from Princess suit at the Investi. things. Well, about his neigh. Orche dream of it “Oh golly, no! I garet in 1978 and his remar- ture of the Prince Dustin Hoff I can’t – name

work as much as I can. Other- riage to Lucy Lindsay-Hogg of Wales. He is man, who sent – bu wise I wouldn’t get out of did not rock his roval obviously frail, boring polio round a “fright. Strat bed. I have to have a project. approval-rating. Last year he leaning on a walk. fully grand” archi. think I mean I might sometimes returned to Caernarfon stick and his

tect to ask his per stop taking photographs and tle to celebrate the 25th anni. hands shake so badly you mission to raise the garden orcha design things but I wouldn’t versary of the Prince of Wa- wonder how he can handle a wall. Snowdon thought it was – I can’t do nothing. And les’s Investiture and there is camera, but he still insists on a bit odd of Hoffman – pape the other thing is that one is a charming photograph on giving me a guided tour of his “since he and I are about the spea terrified of not being wanted. his studio wall of him and domain — the office and tiny smallest people in London, It’s lovely at my age, as an Prince Charles roaring with studio beside his house in and he’s not exactly going to ries OAP, to be asked to do that laughter at something Sir Kensington – pointing out see me hanging out the wash the number of pages for Vanity Harry Secombe said. He has all his treasures. ing” – but, anyway, he falle Fair. It is a tremendous never exploited his title or This is a well-known disagreed and suggested he honour.”

royal connections profession- placement activity which raise it to the height of the thei

• He says this without irony ally and he makes a rule that other journalists have other wall. But the architect – a man whose life is already all his sittings should be warned me about — he will said, “Oh no we can’t do that. So loaded with honours. Most of arranged by editors so that show you things till the cows We can only take it up two dere them are arrayed in his no one can accuse him of come home and never answer courses (two rows of bricks] this we

* * * MONDAY, OCTOBER 30, 1995 17

CHARLES HOPKINSON

good Estuary accent] ‘Have you got a camera you can put around your neck?’ And I said, ‘But I don’t actually use a camera round my neck, I use a tripod.’ He hadn’t done any research at all. I don’t mean that conceitedly but it is rude.”

There is steel beneath his apparent lightness. It comes out every year when he pre sents the Snowdon Awards (about £60,000 worth of bur saries for disabled students) and invariably makes a fight. ing speech – attacking hear ing aid manufacturers for their enormous mark-ups, or British Rail for making dis abled people travel in the luggage van, or the Chelsea Flower Show for not allowing guide dogs.

I wondered if he worried beforehand about attracting flak, but he said: “I don’t care about that at all. Because I’m not politically involved with any party, I’m

6 I don’t think people

discriminate on! purpose; they do it through ignorance,

8

totally unambitious, I’ve got nothing to gain, you see, and nothing to lose.”

He says people always assume he got interested in disability because of his childhood polio but, “I’m not sure that’s really true. In the Sixties I was doing quite a lot of photographs about the problems of disabilities in the Sunday Times, and then I designed a wheeichair for a friend, Quentin Crewe, and that went into production

a thes made 5,000, then I got more involved.

He gets irritated when the BBC talks about “the dis abled” – it should always be “disabled people” – and when the managers of public buildings don’t think about wheelchair access. “I don’t think people discriminate on purpose, they just do it through ignorance and lack

of experience. Luckily my alace roof to photograph Glenda Jackson. ‘I have to have a project,’ he says children, all three of them,

are always seeing people whizzing in and out of the house in wheelchairs, so it seems perfectly natural.’.

He said a few years ago that he was worried about his eyesight. He has solved that problem by having special

lenses built into his camera, we’re on a very tight tion. For instance, he carted shirt printed for Sir Ian but now he says, rather

a sunbed down to Shepperton McKellen saying “Where. bleakly: “I’m not worried Lord Snowdon to photograph Kenneth Bran-fore art thou Romeo?” and about that so much as other e doing is piugging agh supposedly tanning for hiring a bunch of corgis for things…” He obviously t book of photo. Othello – the only trouble is Alan Bennett. “They cost a fears more after-effects of his ild Flowers (Pavil. that Branagh is playing Iago. fortune – £500 for the morn- polio and he has kept a Times 9), but he seems Then there is a very ing—and I’m terrified of cor article entitled “Return of a ener to talk about strange picture of Michael gis!” Meanwhile, Graydon crippling disease” which

for Vanity Fair. Gambon, dressed as a Carter, the editor, kept issu- starts off: “Poliomyelitis is a are quite a few cleaner with a mop and sing orders like “I want an disease which sometimes has

priate jolas hicket standing next to the elephant (seriously)”. Ide- the unpleasant habit of – nont nennle to bust of Samuel Johason in aut Carte

– Dichard Harrison to haunt ite virtims

Of Snowdon

99), but he seems Then there is a very ing- and I’m terrified of cor Keener to talk about strange picture of Michael gis!” Meanwhile, Graydon

article cu rk for Vanity Fair. Gambon, dressed as a Carter, the editor, kept issu- starts off: “Poliomyelitis is a

crippling disease which e are quite a few cleaner with a mop and sing orders like “I want an disease which sometimes has

sillo priate jolzar huirket standing next to the elephant (seriously)”. Ide- the unpleasant habit of not expect people to bust of Samuel Jonison 1

Sis happily, flicking Poets’ Corner, Westminster phant with Richard Harris decades a treburet ite uvrirtims

the magazine. “Do Abbey. Why? I was told to and Peter O’Toole sitting on struck down.” It cannot tts one?” he asks, go and do Gambon with Ben top of it but Snowdon make cheerful reading. ng to a picture of Alec Jonson in Poets’ Corner demurred – **Elephants are I asked if he had ever had ven and Penelope Wil- [because Gambon was play. extremely difficult to get and to worry about money, and he

orchard in 19th-cen- ing in Jonson’s Volpone], but very expensive.” So he put said, vehemently: “Yes I do ostume. Er… “Well, his tombstone is on the floor Richard Harris and Peter – permanently, all the time. e they are playing at and I just saw the name O’Toole at a tea table in the The upkeep of things, the ocent in The Cherry Johnson and thought that Dorchester, and made do cost of things. And I don’t do and by – what’s-his- was the one.

with Alan Rickman standing any advertising much, you ! Chekhov, that’s right “They wanted me to photo on a stone elephant instead. see, and that’s where the big tits being played at graph Gambon in a 16th-cen- He said all his sitters were money comes from. At Cam furd, which everyone tury hassock – or do I mean very co-operative. Surely not bridge my father gave me I s of as Shakespeare. So cassock? I always get mud. Jeremy Irons? I exclaimed, think quite rightly — £300 a $ in Anne Hathaway’s dled — and I had to do it at but even Irons was fine. Per- year, which was very little rd, which is an apple seven b’clock in the morning haps Snowdon’s own cour- actually. But it taught one a urd, and we’ve got a because that was the only tesy rubs off on his subjects. lot. I don’t spend very bag here with Sbake time they would let me in and He does a lot of research much.” a’s head on it and then I just happened to see that beforehand, reading up press But he can’t really believe ought millions of cher mop and a bucket and I cuttings and discussing how that he’ll be penniless toni br which we scattered on asked: What do people wear they would like to be shot. row? “I think everyone does. rass as though they ve when they clean this abbey?’ He believes that “you’re Don’t you?” No. “Oh! NOW 1 off the apple trees and they showed me this more likely to be lucky if you’re going to make me g you can barely see wonderful blue top with you’ve done your research. think about it all the time!” 1. It’s completely Westminster Abbey written Someone came to photo And so he waits eagerly for ulous!

on it so I used that. But it was graph me the other day, the phone to ring and bring me of his jokes are ren a mistake.”

didn’t know anything about him another enormous pho d even more baffling by He went to great lengths to me at all. He said [here Lord tographic assignment “It is based on duff informa- set up his jokes, getting a T. Snowdon puts on a rather so lovely to be wanted.” H

 

WHEN THE VACCINE CAUSES THE POLIO

TIME Magazine

October 30, 1995 Volume 146, No. 18

CHRISTINE GORMAN

EXPERTS SEEK TO ELIMINATE THOSE FEW CASES THAT ARE STILL CAUSED BY INOCULATION. ONE OF THE MOST SUCCESSFUL PUBlic-health programs ever conducted, without doubt, was the U.S. campaign against polio in the 1950s and ’60s. In less than a decade, the withering scourge that had at one point struck nearly 60,000 children a year was all but eradicated from American shores. Almost forgotten in the decades since, however, has been the terrible price a small number of children pay as a by-product of the protection the rest of the population enjoys. According to the Centers for Disease Control and Prevention, six babies a year, on average, contract paralytic polio from the very vaccine that was supposed to prevent it. Over the past few years, some parents and their pediatricians have waged a grass-roots effort to change the way 4 million U.S. children are vaccinated each year. Their struggle has reawakened a 40-year-old scientific argument between two giants of preventive medicine: Dr. Albert Sabin and Dr. Jonas Salk. Last week the parents’ campaign reached the highest levels of health policymaking when a CDC panel voted on whether to change U.S. policy. The panel faced a difficult dilemma. For 30 years, doctors have had a choice between two competing polio vaccines. The first, pioneered by Salk, is made from viruses that have been inactivated or “killed.” It protects those who are vaccinated but does not stop them from harboring live viruses in their intestines. Should they encounter polio “in the wild,” they could become silent carriers and pass the pathogen on to others who have not been inoculated. If polio were to break out–as it did in the U.S. in the ’50s, and as it has right now in parts of India–the Salk vaccine would not protect the population at large. By contrast, the second preparation, which was championed by Sabin, is made from weakened–yet not entirely docile–strains of the polio virus. It provokes a more powerful immune response. If it doesn’t give the recipient polio (and in 99.99996% of cases it does not), it not only protects those who are inoculated but also prevents them from passing on any “wild-type” infections. That is small consolation to parents like Carol Philips of Brooksville, Florida. Her son Ryan, 10, developed polio soon after receiving the Sabin vaccine. “If I had chosen the other,” Philips says, “Ryan would be fine.” It was the Sabin vaccine, however, that actually eliminated polio epidemics in America. Today, of the 20 million doses of polio vaccine on the market, less than 500,000 are prepared from “killed” viruses. In fact, there have been no home-grown cases of naturally occurring polio in the U.S. since 1979. With the chances of a major outbreak so remote, the U.S. could switch to a killed-virus vaccine. There’s a catch, however. There is no way to prevent someone who is just developing the infection from arriving in the U.S. and spreading it. One in five American children is unvaccinated for polio. These children, or anyone with a weakened immune system, could contract the disease. If the U.S. relied only on the Salk vaccine, a new epidemic could be unleashed. After weighing the risks and benefits, the CDC panel decided to split the difference. Their recommendation, which is slated to become official policy in 1996, is to inoculate infants twice with the killed-virus vaccine at two and four months, then twice more with the live-virus vaccine before the age of six years. Infants, whose immune systems are not yet very strong, do not get exposed to the slightly more dangerous preparation. Older children, who have developed tougher constitutions, will get the benefits of full protection. Experts expect that the change could prevent most vaccine-associated cases of polio. It will be a tough sell. As Dr. Ram Yogey of Children’s Memorial Hospital in Chicago points out, the Sabin vaccine worked so well that health workers may resist the change. Says Dr. Yogev, who favors the change himself: “Physicians respect Salk. But we love Sabin because we saw the epidemic. We were a part of it, and suddenly it disappeared.” Inconvenience and expense are also factors. The Sabin vaccine comes in a sweet-tasting liquid, but the injected. Parents and youngsters will not welcome another shot in the already packed vaccination schedule. The injections cost more ($4.99 a dose in the public market vs. $2.27 for the live virus) and may mean another trip to the doctor. Some are worried that the immunization rate, particularly in inner cities, will drop. One person who has no doubt that the CDC made the right choice is 10-year-old Ryan. Although plucky enough to play Little League baseball with a pinch runner, he has his down moments. “I hate this polio,” he says. “Even if it was for just one day, I wish I could run.” That may never happen, but if all goes as expected, fewer children will find themselves in Ryan’s shoes. –Reported by Scott Norvell/Atlanta and Alice Park/New York