News

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

News of the World 16 July 1995

3 year old Daniel Hadlow

The Times 6 April 1995

DAILY MAIL WEEKEND” MAGAZINE

SATURDAY 22 APRIL 1995

 

TONY GOULD was a young Gurkha officer at the peak of his career when he was cruelly struck down with polio. Thirty years on he now believes that salutary brush with death was one of the best things that ever happened to him

Fighting spirit: Main picture, Tony Gould with kensi his wife Jenny and, below, as an officer in the Sac Brigade of Gurkhas, before polio struck polio has been both one of the worst and one of the best experiences of my life. When I got it, it seemed like the worst thing that could possibly have happened. It was in Hongkong in 1959 and I was 20, a National

Service officer in the Brigade of Gurkhas. One moment I was playing football, the next I was in a hospital ward, flat on my back, struggling for breath. When they lifted me out of bed, I cried out with pain. But when they lowered me into a box with a yawning lid, pain turned to terror. Was this was my coffin? Were they burying me alive? I swore at the doctors, but they persisted, forcing a tube down my throat and clamping the box tight shut around my neck, so that I lay there like a conjurer’s assistant with only my head exposed. The coffin was, in fact, a tank respirator or ‘iron lung’ – and it was to be my home for the best part of a month. I watched the world go by in a mirror set at an angle above my head. There was also a glass shelf, for a book to be placed on, so that I could read if someone turned the pages. After a couple of weeks, the Royal Army Medical Corps colonel in charge of my case came to me he was taking me off the danger list’. I Wasn’t aware I’d been on it. He remarked casually: ‘I suppose you know what’s wrong with you…’ Until then it hadn’t occurred to me that it might have a name. I knew nothing about polio. I learned that polio is caused by a virus. Initial ly an intestinal infection, if the virus gets into the bloodstream and attacks the nerves in the spine, it cuts off the impulses from the brain to the brain to the – more progress. I was being To, which then wither and die. The resulting Army with a disability paralysis might or might not be temporary, was now complete: I was a c B depending on the extent of the damage.

As cripples went, however, was not The first six months are critical in terms of unsightly. Indeed, a squadron-leader who’d, but you may make progress at a slower rate for lost both his legs endeared himself to me by up to two years after the attack. I was lucky, My remarking, Hmmm, tall, dark and with an inter- recovery was rapid, and within two months l limp…’ was strong enough to be flown back to England. I began to perceive dimly that there was more

I had been abroad for nearly two years. to life than youth and strength. If I couldn’t Although my father had been flown to Hongkong op my body, I would have to develop my mind. I to see me while I was still on the danger list, I was had left school at 16; now I would go to psychologically unprepared to meet my family. and educate myself, my fantasies I might have imagined returning home a wounded hero, certainly not an invalid.” t this point I reacted against There were adjustments to be made on both the conservatism of my Sacs. My mother, who’d had a premonition of upbringing and professed disaster when I’d first flown out to Malaya, now

myself a socialist, causing had to face the fact that her son might be a lifelong tension in the family. If I’d cripple. My ten-year-old sister feared that I would known you’d feel like that,” be unrecognisable and was relieved to discover my father said, ‘I wouldn’t that I could still tease her the way I’d always done. wasted all that money But it would be a while before I’d be physically sending you to public school.’ I fell in love with a fit enough to return home. girl whom I remembered as a flat-chested 14-year- After six months of intensive physiotherapy in old but who’d grown curvaceous in my absence, hospital, I took my first faltering steps on crutch- and annoyed her parents by keeping her out late ( with the weaker of my legs encased in a way of revenge, they privately dubbed me ‘Long caliper. It was like walking on stilts. My parents John Silver’). took me out for a celebratory dinner at a nearby I drove my first adapted car, which had a hotel, it was my first excursion and I insisted on notice, then obligatory, saying, ‘Disabled Driver, accompanying my father on a short walk round No Hand Signals’, with such ferocity that the garden. It was a cool evening but when we rural neighbours were wont to mutter into their returned, sweat was running off me.  ‘Disabled driver? Stirling Moss, more like, At that stage I believed I had to believe – Hankering after the old life me choose to that I would make a complete recovery. But that go to the School Of Oriental And African Studies illusion was shattered when the chief medical at London University to study Hindi after doing officer of the RAF rehabilitation centre to which my GCE A-levels by correspondence course. Per- I’d been sent told me he didn’t think there was I would be able to return to the East, with much more they could do for me. I was dumb- another language to supplement the Gurkhali I’d founded. Every professional I’d encountered had learnt in the Army. I soon realised my mistake. My encouraged me to believe that I would, eventual interests were pulling me in another direction. So ly, walk unaided. Now this man was calmly ended up at Cambridge reading English instead. telling me that I couldn’t expect to make much was the watershed. At Cambridge I took steps as a writer and found it just — dizzying as learning to walk again. But in providing me with a goal at such a crucial time of my life, polio had done me an enormous favour.

In the same month and year (Apni 1959) that contracted the disease in Hongkong, the Bimmung ham City and England international footballer Hall died of polio in this country. By that time, the anti-polio vaccine discovered by Jonas Salk had been available here for a couple of years, but the take-up was slow. Hall’s death changed that overnight and clinics were set up all over the UK. Not long afterwards Albert Sabin developed the oral polio vaccine, which proved easier to administer. It was used for the first time in Britain during the full epidemic of 1961 — the last serious outbreak in this country. As a result of these vaccines, polio is largely a thing of the past in Europe and the Americas at least. It is still rise in India and the Far East, as well as in parts of Africa, despite continuing efforts by the World Health Organisation and Rotary International to eradicate it. For anyone under the age of 30, polio is part of prehistory. But for polio ‘survivors’, polio is not a thing of the past. Not only do we live with whatever degree of paralysis it caused, we also face a new threat, the so-called Post-Polio Syndrome, or Late Effects of Polio, which range from new muscular weakness, reminiscent of the initial attack, to extreme ME-like fatigue. My belief that my polio was not a progressive, degenerative disease was thrown into doubt. For 30 years I believed that I had put polio behind me. I might walk with a caliper and a stick (after 20 years I switched to two sticks and dropped the caliper), but at least I could walk. After university I went out into the world of work and just got on with my life. I had also got married although, in retrospect, my first marriage was a very Sixties affair, almost casually embarked upon, after a whirlwind romance. Two children swiftly followed, and then divorce. If nothing else was quite real, the pai that was. I lost everything in one go. wile, home. I was in limbo, emotionally as surely as I had been physically shattered polio. But polio had taught me that I wasü Vivor, and here again I was given a second cha I remarried and fathered another child. After dramas of my 20s and early 305. the next decades enabled me to pursue my professional as a BBC radio producer, literary editor and Disability was a fact of my life, but it was more than that. Scott Fitzgerald once sak Enest Hemingway: The rich are differeal which Hemingway replied: Yes they hava Doncy. If somebody hd sugustellionth disabled were different, I would have said: they have less mobility, Leaving aside the anxieties associated with Late Effects of Polio, I no longer regard p simply as a thief that came in die wght jo v ago and took away half my body. We co-e sometimes amicably, at other times loss SO better or worse. Its long-term effect was to my life a sense of direction it might other have lacked had. Like others who ve brushed death, I always have a secrei sense that I have been spared for a purpose. I cannot dig this feeling by calling it religious, it is, I’m al merely superstitious. Yet it has sustained through some dark iimies.