News and Experiences

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.

Leicester Mercury 2 February 1995

16 November 1993 Daily Mail article Hospital Watch

FIGHTING AND SURVIVING ALL OVER AGAIN: PATRICIA ROCK’S CHILDHOOD POLIO RETURNED IN AN UNEXPECTED WAY

Thomas Moore

The Independent

Tuesday 12 January 1993

Had Patricia Rock been properly diagnosed when she tried to stand on her crutches again after a spell in hospital, she might still be walking. Instead she has spent more than 10 years in a wheelchair, battling against immense fatigue, muscle weakness and pain in her back.

Ms Rock is a polio survivor. The virus left her with paralysed legs at the age of two. With the help of callipers and crutches, she enjoyed 30 years of upright activity, but 12 years ago her polio returned in an unexpected way. Ms Rock is one of a number of polio survivors to develop a newly recognised syndrome called ‘late effects of polio’, which can appear 30 or 40 years after the original attack. Doctors now believe that in about a third of polio survivors, muscles eventually become too weak to support limbs; in some more serious cases, breathing and swallowing can become an effort. Other survivors may experience fatigue only.

Ms Rock had packed her life with activity. She worked full-time as a welfare officer for a disability organisation, went on archaeological digs and excelled at wheelchair basketball. She won a number of Commonwealth paraplegic swimming medals in backstroke.

‘I was a go-getter. Polio became less and less of an issue as I grew older and realised I could do most of the things able-bodied people could. I didn’t have a progressive disability and, unlike some polio survivors, I didn’t have any respiratory difficulties,’ she says.

Her life changed when she was forced to come off her crutches when she developed tennis elbow. Because of her reliance on her arms, she was admitted to hospital for intensive physiotherapy and expected to leave after a week with her elbow healed and her crutches back under her arms.

It was not to be. ‘Once they had got my arm working, I stood up on my crutches, as usual – and passed out. I had incredible back pain, which I had never had before.’ Even now her doctors are unclear as to why the first hospital spell precipitated the weakness of her back muscles. They suspect that the inactivity caused by the unrelated tennis elbow accelerated a process that she would otherwise have experienced gradually.

Two mistakes were made. First, Ms Rock was given a potent analgesic for the back pain, but everyone forgot that she should have received a reduced dose because of her polio, which had left her with poor circulation. As a result she could not clear the drug from her body in the normal way. The overdose sent her chest and back muscles into spasms, she had difficulty breathing and her vision deteriorated.

Ms Rock spent the next three months in hospital. Her back was so weak and painful she could not even sit up. Doctors could find nothing wrong with her, and physiotherapists thought she was malingering.

The second mistake was to make every effort to get Ms Rock back on her feet. Ten years on, the emphasis is on resting the overused and exhausted muscles. ‘It is very frightening not being taken seriously by the medical profession. My spine was packing up 40 years early and nobody would listen to me,’ she says.

Ms Rock was finally seen by a consultant who specialised in curvature of the spine. He saw from her X-rays that she had a double ‘S’ bend in her spine. Immediately she was given a corset to support her back that allowed her to sit up – and she was told to stay with her wheelchair. Had she tried to stand much longer, she would have broken her back, the consultant said.

All this pain and difficulty had made Ms Rock suspect that her orthopaedic problems and muscle fatigue might be linked to her childhood polio, but her theories attracted no support from her doctors. Then Ms Rock heard about a conference in St Louis, Missouri, devoted to ‘the late effects of polio’. She booked a flight, and it was a decision that changed her life.

During three days she sought advice from dozens of specialists and fellow polio survivors. They confirmed that her back muscles, damaged by the polio virus, had begun to wear out, and without muscular support her back had collapsed, causing the double curves. She was told to slow down, take plenty of rest and gradually build up her muscles. If she ignored the advice, she risked permanent damage to her back. ‘At last I knew what was happening to me and that there were other people experiencing exactly what I was. I couldn’t sleep because I was on such a high,’ she remembers.

Ms Rock returned to the UK and began to put her life back on the rails. At about this time a handful of British specialists were starting to think that there might be problems, and a rehabilitation unit was set up at the Royal National Orthopaedic Hospital at Stanmore, London. The Stanmore unit has developed a reputation for looking after every aspect of post-polio management. Counsellors and social workers are on hand to help patients to come to terms with their post-polio diagnosis.

Dr Joseph Cowan, director of the unit, estimates that around a third of the ‘tens of thousands’ of people affected by polio in the post-war epidemics will experience late effects to some degree. Many have yet to approach their GPs.

Doctors have generally been slow to recognise the link between the musculoskeletal symptoms and polio. Many polio survivors who approach their GPs are told their symptoms are simply due to ageing. Dr Cowan says this is rarely the case. If there are no signs of thyroid problems or anaemia, doctors should refer for a full orthopaedic and respiratory assessment. ‘GPs need to be aware of this problem. They are patients’ first port of call. Post-polio must be included in the diagnosis of patients who present with fatigue.’

Dr John Shneerson, consultant chest physician at Papworth Hospital, Cambridgeshire, agrees. He warns that new musculoskeletal symptoms should never be ignored in polio survivors. ‘Not all polio survivors will experience late effects, and in others it will be mild. But if anyone notices any changes, they should seek advice,’ he says.

In most cases it seems that the muscles originally affected by polio are those which later begin to weaken. People who were kept alive in iron lungs during the original infection because the virus had weakened their respiratory muscles may have difficulty breathing in later life. They suffer interrupted sleep because of their laboured breathing and are consequently exhausted during the day.

Dr Shneerson says a ventilator can cure the problem. But he adds that people with breathing difficulties must be carefully assessed to find the most suitable device. Mechanical support can also help. The centres with the most experience of assessments are Papworth, and St Thomas’s and the Royal Brompton hospitals in London.

Dr Geoffrey Spencer, consultant in charge of the respiratory unit at St Thomas’s, has seen around 600 polio survivors at his clinic. He says doctors are beginning to understand what causes the muscular degeneration. During acute polio, the virus attacks and destroys many of the nerves controlling muscle fibres. Without nerves, the fibres cannot work; and without work, they die. Polio survivors have to use their full muscle strength to do the simplest of daily tasks, and the overused muscle fibres begin to wear out.

Dr Spencer says it is crucial to pick up the loss in muscle strength early and then identify the activity that is causing the overuse. Simple lifestyle changes take the pressure off the muscle and after a while light activities become possible once again. Procrastination can lead to chronic strain and cause irreversible loss in muscle function. ‘There’s no point just saying take it easy, but we can usually find the source of the trouble,’ Dr Spencer says.

Ms Rock adopted a lifestyle that was gentler on her muscles, and until she damaged her shoulder in a recent accident, she was nearly back to full strength. She was able to discard the back support corset a year ago and can sit unaided in her chair. She works part- time, is researching a PhD and sits on various disability committees. She has come to terms with the fact that her back muscles will never be strong enough for her to stand. ‘I will never walk again, but I don’t have the muscle weakness any more. I get episodes of back pain every few years, but that is treatable.

‘Fortunately, I had the money to go to another country to find out what was wrong with me. But if we had had post-polio clinics in this country at the time, I might have been diagnosed at an earlier stage and my back might not have collapsed. I only hope other people take note.’

 

Unknown

Lincolnshire polio case, 2 year old

Postwar polio victims battle second phase

Zimbabwe Herald 27 October 1957

THOUSANDS OF polio victims around the world who survived post-war epidemics of the crippling illness are battling a cruel second phase of the disease most thought they had beaten.

Post Polio Syndrome identified only in the past few years, has produced a growing number of support groups for victims as well as specialist clinics.

Experts studying the syndrome agree it is not a recurrence of the polio virus, but an onset of fatigue, pain and muscle weakness caused by failing nerve cells which have been working over time for 30 years or more to compensate for the damage done by the original infection.

 

cells that were over-functioning for many years – they have been trying to compensate for lost cells. But after a number these cells can not  maintain all of the functions of the muscle there

used to.” That was a speculative identified only in the past theory in 1982 when doc few years, has produced first began paying growing number of SUD- attention to the problem, he said, but now we have 28 the evidence to prove it. It is a process that converts studying the for many years. syndrome agree it is not The whole system is try a recurrence of the to remodel itself, but virus, but a cannot do any more remodelling’. weakness caused by fail Dr Dalakas said the syndrome was not life-threatening but could incapacitate. Its to compensate effects for the damage worst among people done by the who had the disease most Original infection.

severely first Polio has been all but time wiped out in industrial nations since the He said there was 20 advent of vaccines in overall therapy for 1955. Less than a dozen syndrome, although doc cases occur in the United tors had experimented States each year. with certain drugs. They But it remains a Killer had also encouraged and a crippled in less de patients to use walking developed areas, with at .sticks or braces and had least 300 000 cases Or instructed them how to paralytic polio around the compensate for the problem each year. In the United States as “We really don’t many 23 a third of the what and how much ex 300000 polio victims who erase will be beneficial to survived epidemics after patients. Some say use it the Second World War or lase it. Others say are believed to be at risk don’t or you will Post – Polio Syndrome agree with either.”  drama There are 55 clinics The muscles of Post and 200 support groups Palio patients are no in the United States de normal muscles. It is pos. voted to the problems in Bible too much exercise addition to another 50 may not be good. W. support groups in Eur- don’t know. My advice 1: ope, Australia and New to do as much as is com Zealand, Canada and comfortable without over parts of Asia, according to exerting themselves,” Neurologist Dr Marinos Dalakay said: “Patients with old polio have to serve he to the International Polio Sid. — Ziana-Reuter. Network in St Louis. Earlier this year the Network held 2 conferences for Post – Polio Syndrome victims which drew 747 participants from 18 countries. **Fatigue seems to be one thing that a lot of people are concerned about.” said Joan Headley, director of the Network “People talk about the Polio wall – they hit it at maybe three in the afternoon and it’s not just being tired. It’s definite fatigue.”

 

SEPTEMBER

1950

1. S. LEONARD, CLIDDESDEN

WITH

1. S. ANDREW, FARLEIGH WALLOP

MONTHLY MAGAZINE

REV. ARTHUR W. BADGER, M.A.

CLIDDESDEN

CLIDDESDEN. Churchwardens : MR. F. W. MITCHELL MR. A. SELF

Verger.–MISS E. CLIFT.

MUM

FARLEIGH WALLOP. Churchwardens : THE EARL OF PORTSMOUTH. MR. J. D. FLOYD.

MY DEZE PARISHIONERS OF CLIDDESDEN AND FARLEIGH WALLOP9 2

On the night of August 2 there was much shaking of heads and washing of feet before the great caralcade set out irom Farleigh and Cliddesden for Bognor. Enshrined in wet and gloomy days Thursday, August 3 shone out, and stood out. for one of the best Outings we have had, and we have had some good ones here tofore. Four coaches with 1.50 souls out for a dar’s Outing is a responsibility. We take it all in our stride. The ride through some of the most beautifui seeneri in England was good. The sun shone all day long. Merriment walked hand in hand with good humour, and feet were cooled in the waters of the sea. The tea was excellent. The ride home jolly, and that wonderful picture ” Goodbye Mr. Chipps,” seen through the glasses of Henty and Constable, a happy memory. It is the simple things of life that are enjoyable. We reached home about 10 o’clock. A little boy who lost himself in the arms of a policeman, who knew Cliddesden, for a couple of hours, gave me an anxious time. But as he slept most of the time at the Station, and was ready for a good tea, he couldn’t under stand what the fuss was about. Come what may. I had already made up my mind not to leave Bognor without him. I walked miles looking for that child. and I never spoke to so many policemen in all my life. Some one said to me “There must be something in your prayers for fine weather, and a safe return.” Why, of course, there is. Our line of coaches passing through the quiet country side, jubilant with youthful voices, singing an endless medley of songs, helped to make the day memorable. People came to their doors and windows to see what was happening. In a pause. while some cows crossed a Sussex lane, an old man, with a querulous voice said, “Where be they a-goin’?” He wasn’t left long in doubt. Two old ladies, short of skirt, wide of girth, with high leather boots, and ancient straw hats, from which peeped a small white bob of hair. shook themselves, disdainfully, as one of our youngsters shouted a well-known London greeting. I nese two prehistorics turned sharply away, muttering, “What’s the world coming to ?” It was good to be alive as we bounded past smiling cornfields, into the light of the setting sun, and home. I returned from my day’s outing to a funeral, and the day after came the sad news of the illness of Joy Stevens. She was to have gone with our party, but was prevented at the last minute. When I helped the Ambulance man to carry Joy down the stairs, and afterwards put her on the bed in Basingstoke Hospital, I failed to realise the seriousness of her complaint, thongh I had my suspicions. It was a tense moment, as I waited with her father in my study, for the diagnosis to come through. It was confirmed as Infantile Paralysis. We neither of us spoke. Since then, and during the next week. the replies as to her condition alternated. until one day, she was reported “Out of danger.” And then Her condition shows improvement,” and “No change!“ Had a comfortable day.” We leave this lonely child in a ward by herself at Southampton, but not alone. She is in God’s hands, supported by our prayers. We all extend to Mr. and Mrs. Charlie Stevens our sincere sympathy. To Mrs. Brickel, a very dear friend, and to Mr. Rickwood, we send greetings, and best wishes for a speedy recovery after their operations, and to Jr. and Mrs. Kenny Dunford, our sympathy. I have to offer my very best thanks foç the folhuing unsolicited gifts from Cliddesden people for the Sunday School Outing. Sy old Parishioner, £7 10s., being change out of £20 for the cost of the Restoration Plate. Mrs. F. H. Bird, £3 38. Mr. and Mrs. G. Whiffen. £5. Anonymous, one of many gifts for the restoration. 01.

heart about in these depressing days. In’t it due to the impact of Christ upon our lives: May I offer to Miss Eveline Hunt our best wishes on her approaching marriage to Mr. John Newman. And also our congratulations on passing her examination as a State Registered Nurse. The Exam. was taken while she was confined to her room with illness.

It was said by a famous Foreign Secretary. Sir Edward Grey, in 1914 ” that the lights were going out all over Europe.” We mar say, that an earthquake of war is shaking, not only Europe, but the world. If your faith in God has gone, and you are bewildered, then blow on your faith with the breath of prayer. and make it glow again. Read S. Paul’s Epistles, study our beautiful Collects, and may God “ Lighten our darkness.” We must do our duty with courage, act firmly, and with resolution.

Keep smiling

Yours sincerely,

ARTHUR W. BADGER.

HARVEST FESTIVALS. September 24. Farleigh Wallop. Morning Prayer and H.C.. 9.30 a.m. Festal Evensong. 6.30 p.m.

October 1.––Cliddesden. H.C., 8 and 12 noon. Morning Prayer, 11 a.m.

Festal Evensong. 6.30 p.m.

WEDDINGS (Farleigh Wallop). Sept. 7. John Newton Newman and Frances Eveline Hunt.

BURIALS (C‘liddesden). Aug. 5. David Dunford, aged two hours.