Experiences

Polio Survivors Network were very sad to announce that our founder and tireless advocate, Hilary Boone, passed away on 15 July 2024. We know many of you joined the funeral service in-person and also using the online streaming service. Many condolences were received and sent to her family and friends. We also received many kind donations in lieu of flowers as requested by the family.

We thought it only appropriate and proper to dedicate a good portion of this newsletter to the memory of Hilary, a fighter for polio survivors everywhere. Please find following the eulogy which sums up Hilary’s fascinating life despite the obstacles she faced.

Eulogy – Hilary Ann Boone / Gowa Meendegaw (Dancing Owl)

Hilary was born on 16th March 1947, in Hammersmith. In 1952 the UK General Post Office offered her father Hal, a job in Benghazi, Libya to organize the rebuilding of the telephone system. Hal flew out to Benghazi, and weeks later his wife Mabel, Hilary and her younger brother Robert went out via boat on HM Troopship Dilwara.

The yellow quarantine flag was flying because Hilary and her brother Robert had caught whooping cough and then a few months later Hilary caught polio and was paralysed from the waist down after playing with a girl at the beach. Hilary was taken to the army hospital in Benghazi, her mother Mabel was told she was only allowed to talk to her from the doorway. Once Hilary was out of isolation her parents asked if swimming would help with her recovery. An army truck took Hilary to the Mediterranean ocean to swim every day. Hilary quickly learned to swim underwater, and her father Hal would walk alongside and hold her up whilst she got her breath back.

In December 1953, Hal’s work was finished, and it was time for the family to return to England. Hal wanted to make an adventure out of this so he decided rather than going home by boat he had a car shipped out to Benghazi and they would take a ferry across the Mediterranean and then drive home through Italy, Switzerland and France, with a final ferry from Calais to Dover.

While packing up the belongings Hilary’s mother Mabel slipped a disc from carrying Hilary. The only treatment was to plaster cast her from her neck to her hips, it made it very difficult for her to sit in the car. On the day the ferry was due, they were waiting at the docks in Benghazi, but the captain radioed that the sea was too rough and that he was going to sail to Tripoli 600 miles down the coast. If they could reach him in 4 days’ time, they could take the ferry to Salerno and then drive home through Europe as planned. The drive to Tripoli was certainly an adventure, getting stuck in the sand, haggling to buy fuel for the car, finding places to eat and even harder somewhere to sleep.

A few years later Hal was offered a job in Jordan for a year and the family visited for a few months in the summer. They visited Aqaba but the best hotel was closed because the King of Jordan was staying, as Hal was a government official the family were allowed to stay in a suite. The only other guest was an Arab actor, they had dinner with him, he was very friendly. Hal was concerned that Arabs found white women attractive and told Hilary to stay away from him. The actor was Omar Sharif, when the film came out and he became very famous Hilary jokingly said she was disappointed as she could have been seduced by one of the most famous men in the world.

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Years later when the family had moved back to the UK Hilary could walk but she fell often, she had an operation to cross her tendons that enabled her to walk more easily. Hilary went on to pass her orange belt in Judo; she was a good swimmer and passed life-saving awards to distinction in the pool and open water.

Hilary’s first job was as a secretary for George Wimpey, a construction company, however this was not an exciting career choice. In 1969, she passed the medical for the Police as fit and went to RAF Dishforth to start her 13-week training. On the second day she was given the timetable for the week, Friday was cross-country running. Hilary asked to see the Sergeant and explained that she could not do this. She told the Sergeant she could run enough to get around playing tennis and netball but after having polio as a child she could not run any distance.

She thought her days as a policewoman were numbered, it was decided that as she had higher qualifications in Judo and Lifesaving, she was given the weekly chance to try and complete the rest of the training. A list went up for the 40-mile Lyke Wake Walk across the North York Moors. Hilary put her name up and later saw that it was crossed off, so she put it back up again, but again it was crossed off. She complained to the Sergeant and was told as she could not run it, it had been decided that she would not be able to do this. She asked if the others had been asked if they had walked that distance before and the answer was no.

The Sergeant allowed her to attempt the walk, but her car had to be driven by someone else and had to be part of the back-up team. It was decided they would support her for the first 9 miles and then her car would be available to take her back to the training school. Her car did take someone back to the training school, it was not Hilary. Nearing the end, she had to crawl up a hill on her hands and knees, it took her 18 hours, but she did it.

She completed 4 years as a policewoman at Heathrow Airport, including 2 years in CID before marrying a colleague and moving to Lincolnshire.

In 1973 she gave birth to Michael and in 1976 Alison. Hilary continued her love of swimming and taught disabled children and adults, volunteered as a lifeguard at Chapel St. Leonards and worked as a lifeguard/swimming teacher in many pools across Lincoln.

In 1987, Hilary fell, and she struggled to recover from this point on. From 1989 to 1994 Hilary was an Occupational Therapy Aid, working at Ancaster Day Centre and then in West Lindsay running craft groups for the elderly and disabled. She continued with her education learning British Sign Language and Adult Teaching Certifications.

Finally in 1995, she was diagnosed with Post Polio Syndrome, from this day on she tirelessly searched for information.

She met Peter Jay from the British Polio Fellowship, and they organised a meeting at a local hospital, 52 people turned up and the Lincolnshire Polio Group was reformed after 20 years. Hilary met Helena Edwards from the Leicestershire Polio Network, she said she would share all their work if Hilary started a group in Lincolnshire. The first newsletter for the Lincolnshire Post-Polio Network was published in September 1996. In 1998, she became a founding member of the Lincolnshire Neurological Alliance.

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Hilary did not stop researching from that day onwards, she gave many presentations, her first at the International Polio Network Conference in 2000. Her presentation at the 2nd European Polio Conference in 2014 was featured in the Journal of Rehabilitation. She put together and edited nearly all the 126 newsletters for Polio Survivors Network and has met many of the world’s top Post Polio Specialists.

Hilary met Richard online in 1997, and in real life on 20th May 2000, in the first week he took her to a State Shoot. They had to drive down a road made of sand and then turned towards the edge of palm trees. They parked the truck, and Hilary got the electric scooters out of the truck and off they went towards a few signs. One pointed to a Hawk & Knife Throw, Hilary thought she didn’t want to watch them throwing knives at birds. Hawk of course was Tomahawk. Then there were folks in costume of the pioneer times both cowboys and native Americans. They met so many lovely folks and nearly everyone asked Richard if he was going to get to the Rendezvous in January.

Richard took Hilary to a Rendezvous at Charley Knights place – the last before Alafia River Rendezvous bought some land at Homeland, FL. There were tents and tipis and folks living just like in the films she had watched on TV. She had not wanted to feel out of place as Richard had loads of outfits, so she had gone into a Goodwill store and purchased a curtain and made a long skirt and luckily found a white blouse that was near enough. Going round and talking to the folks was so interesting and she told Richard that she would love to do more of this, thus began her love of reenacting.

They attended the Final Ceremony a week later and standing in a circle with three Native American chiefs performing the ceremonies and the ‘cowboy’ elders sitting on chairs in the circle. They all went through the circle taking a pinch of tobacco from a pouch and sprinkling that on the fire saying their prayers as they were taken up to heaven, so moving. Then they passed a talking stick round the circle, and everyone was invited to say something if they wanted to. Hilary took the stick and her voice broke, it was such an emotional experience, the most uplifting spiritual experience she had ever had. They also went to Singing River, Fort Foster and a local event in Emerson Point Park where they lived.

In March 2008, Hilary and Richard settled permanently in Lincoln, where they enjoyed the British Westerners Association events, were members of the Reepham Shooting Centre and volunteering at Lincoln University for over a decade.

My story starts during WWII when my father served in the Royal Signals and spent some time in the Benghazi, Libya telephone exchange.

 

In 1952 the UK General Post Office were looking for someone to go out to Benghazi to organise the rebuilding of the telephone system. My father’s interview was late in the afternoon and he was bluntly asked, “why do you want this post?” He told them he was

 

fluent in Arabic and he had set the charges to destroy the equipment during a retreat. He got the job and within a few months along with my mother and younger brother we travelled on the SS Delwara landing in Tobruk where my father met us.

 

The yellow quarantine flag was flying because my brother and I had caught whooping cough and then a few months later I was paralysed waist down with waist down paralytic polio. I was taken to the Army Hospital in Benghazi and my mother told me that initially they were only allowed to talk to me from the doorway. My mother concerned about occasions I needed the toilet was met with the reply “Oh, I just have to call Orderly and they bring me a bedpan” When out of isolation my parents asked the doctors would swimming help me and it was not long before an Army truck took me to the Mediterranean for a swim each day. My father told me that I quickly learned to swim underwater and he would walk round after me to hold me up whilst I got my breath back. After a few weeks I was allowed home but with the Army truck picking me up daily for hospital physiotherapy. We came back to the UK. I could now walk but fell often. I had to have regular physiotherapy and so remember two of the exercises. The first has caused my feet to twinge. I had to sit on a chair with my foot in a bowl of water and underneath my foot was a metal plate covered in a cotton and I had to pull a lever to give my foot muscles electric shocks. The other was to stand at wall bars in a gym and do knee bending exercises in sets of ten. If I bent my left knee more than four inches my leg would collapse.

 

I passed to Orange belt in Judo. I was a good swimmer and took and passed life-saving awards to Distinction in the Pool and Open Water. I passed a medical for the Police as fit and went to RAF Dishforth to start my training. The second day we were given the timetable for the week and I was horrified to see Friday was cross country running so I asked to see my Class Sergeant and explained I would not be able to do this. Imagine his response… I told him I could ‘run’ enough to get round tennis and netball court and I could hit a ball in rounders so far that I could walk round. I had polio as a child and cannot run any distance. I thought my days as a Policewoman would be over before they started. However, I was examined and it was decided that as I already had higher qualifications in Judo and Life-Saving that were required I should be given a weekly chance to complete all the rest of the training. The 39 mile Lyke Wake Walk is across the North York Moors and a list went up for anyone wishing to take part. I put my name up and later saw it had been crossed off. I put it back on the list and again the next day it had been crossed off. I complained to my Sergeant and was told that as I could not run it had been decided that I would not be able to complete this. Now we see an example of where the Pig Headed I can do it don’t tell me I can’t

 

polio survivor. I asked have the others been asked if they have walked that distance before and the answer was No. I was allowed to do this but my car driven by someone else had to be part of the back up team. They had decided that they would support me for the first nine miles and my car could take me back to Training School. Well my car did take someone back at the first rendezvous point but it was not me. Nearing the end I had to crawl up one hill near Fylingdales on my hands and knees and it took me 18 hours but I did it.

 

I completed four years as a Policewoman including two years in C.I.D. and marrying a colleague. He wanted to move nearer to his home in Yorkshire and we compromised on Lincolnshire.

 

We all have different levels of damage, different therapy, jobs and hobbies and can add other medical conditions that need considering. Most health professionals that I have seen have been surprised that my left leg is very weak from hip to knee but right leg knee to toes. I have more weakness on the left side of my body including swallowing muscles and one that moves my eyes side to side.

 

We are a nightmare for health professionals especially those that have not been taught much about polio by

 

their Colleges of Medicine. Imagine you are one of these health professionals and you see your next patient has had polio for say 60 years. You think back to your training and Polio was a half hour lecture with Leprosy.

 

I spent seven years at my local hospital each time being given more physiotherapy exercises. I really tried hard but all I did was become less and less able. I found out years later my records are endorsed “malingerer.” I was given an MRI and told from the results ‘Glad you are better’ I replied “I was not better and in fact had continued to deteriorate over the last seven years, I had polio as a child could that have anything to do with this” “Oh,” said the locum orthopaedic consultant “there is something called the Late Effects of Polio but I know nothing about it” I left his office and went directly to the Hospital Library who redirected me to the Health Information Service where I was given copies of the article in the Independent by Patricia Rock and another article by a GP…. both in our PSN Library. I took these articles to my own GP who soon commented I am sorry you have been saying the same thing for some years now “I did not know the condition existed.”

 

It is now over 25 years and getting medical support has been varied but mostly with my providing medical quotes and articles. Although professionals that I see tend to raise a questioning eyebrow when I explain that my left leg is very weak from hip to knee, but my right leg it is knee to toes.

 

I have exercised as much as each daily energy and allowed. The purchase of a Hot Tub for the garden cut out a lot of actions going to and from a swimming pool. Article in our library Julie silver? As a Senior Lifeguard in Pools and at the Coast for safety, it is essential that you have someone with you to help you where needed.

 

I started using an electric scooter on my 50th birthday which made a huge difference to the amount of places we were able to go and time spent there. In May 2022 I had my third fall where for the third time in the last few months my legs suddenly folded and I badly bruised my ankle. Thankfully it was not broken but our bungalow is small and no room to use a scooter in the house so I used my husbands spare Jazzy electric wheelchair. My GP ordered an electric chair for me 01.08.22 with rise because my legs are not strong enough to stand without using my arms and that is quite a strain on my shoulders. It took a year for the paperwork to be done and the order was placed on 02.08.23. It took many more months and letters copied to Adult Social Care before I was brought a Jazzy Salsa Mini2 with the rise facility. Helped enormously but two more weeks to get a single footplate for use in our small bungalow. The back is still not the correct one and is fitted at the wrong angle yet still I wait…. And my health and wellbeing continue to deteriorate because of these delays restricting what I could manage including trying to help my husband who was confined to his bed for seven weeks. I have been made aware that many others are also suffering due to long delays. I wonder how much money is being wasted on the time it takes for staff to respond each time you contact them plus the often earlier deterioration of the user whilst waiting.

My Polio- by John Howden-Richards

 

As I find myself approaching my eightieth birthday (dob 6.6.1944), I continue to be intrigued by my friends and acquaintances who have reached a certain age, whereby they, themselves, are now experiencing some of the symptoms, which, I myself, have encountered during most of my life. I would not say that it is satisfying, in the least, but it does create an element of understanding and empathy towards me, which was often absent, hitherto. Naturally, I, too, am experiencing reduced mobility, arthritis, and pain. One Wednesday afternoon in June, 1953, my legs ached and I felt quite tired, as I struggled up the steep hill on the return two-mile walk from school. I went straight to bed, and was admitted to Taunton Isolation Hospital by the weekend, when polio was confirmed. All my toys were destroyed, but I was able to keep Ronnie, my mascot, following fumigation – he’s still with me! A month later, I was sent to the Bath and Wessex Orthopaedic Hospital, where I received physiotherapy, and learned to walk with the aid of two full-length calipers, aided by two sticks. For my present mobility aids, I use two sticks at home, a frame outside, and a scooter and/or a car to drive around the village, and further afield. After nearly a year in hospital, and two further years away from school (I was fortunate enough to have a private tutor), my parents decided to send me to boarding school, in order to mix with other youngsters, hence my arrival at Wellington School in Somerset. It was the right decision, which I never rued, and for which I am eternally grateful.

 

Although I was not able to participate in sporting activities, or the CCF, I took advantage of the gymnasium, where there was an enlightened P.E. master. Together with his support, and that of Jeffery Archer (who was a great gymnast and athlete), and the 1st XV rugby team (who allowed me to join in their circuit training, as far as possible), I developed strength in my upper body and an improved balance; this proved instrumental in my ability to deal, thereafter, with both the physical and mental challenges, as they presented themselves. I went on to attend a course at Aberdovey Outward Bound Sea School, a few years later, where I gained the Warden’s Award – rarely awarded for an outstanding performance (most of my friends don’t know this, but, I consider that it’s relevant to this article). Not a day passes, when I do not reflect on the attributes, which I derived from both these institutions. On leaving School, I became articled to a chartered accountant in Bridgwater, Somerset. Keen to obtain a professional qualification of some sort, this seemed to be the most appropriate for me, in providing job mobility and security. After articles, I went into industry and, then, courtesy of Tube Investments, attended Aston University as a post-graduate, where Lord Plowden (chairman of TI), had established what was to become Aston Business School. Unilever beckoned, and a move to Gloucester resulted in a couple of years, where I really enjoyed my role as sales accountant at Wall’s Ice Cream. However, in 1971, it was clear to me that we would be joining the Common Market (as it was known), which I trusted would provide a necessary stimulus to the UK economy. My decision was to find work on the Continent, before we joined, since I reckoned that this was the likely outcome. We brought forward our marriage, and I left Unilever and joined a British-based company in Düsseldorf, Germany, which was a disaster. Soon after arrival, I discovered, through rather minimal investigation, that the directors were on the fiddle, and that the enterprise was unviable (and, eventually wound up). On return to London, with no jobs, life took another turn, but with opportunities, too. I had always wanted to work in the City, and was fortunate to help rescue a secondary bank, successfully, for a couple of years, during the 1970’s recession. I then found myself on the market, yet again, but the 1974 oil crisis came to my aid, and I joined the DTI and the Arabs in assisting in the establishment of the Arab-British Chamber of Commerce. Five years on, I set up my own practice of chartered accountants & management consultants, with a slant upon managing companies, non-executive directorships, company secretarial roles, and the traditional audit and accountancy – the latter never having been my original aim!

 

However, my entrepreneurial instincts led me to want to build an organisation, which was not so dependent on my constant input. Together with a business partner, in 1993, I formed a company developing and marketing traffic technology (speed cameras). The product, itself was very successful, gaining Home Office approval, speedily (excuse the pun) but it was the early days for this technology, and securing development finance was not forthcoming during that recession, resulting in the business folding in 1995. At least, I tried to fulfil my ultimate ambition, and don’t regret the endeavour. I carried on with my practice, retiring in 2002. My Christian faith has been my metaphorical anchor, in my ability to cope with, and confront, the many difficulties and frustrations, which have – and continue – to cross my path: it gives me the strength and confidence to cope with the problems of old age, and the infirmities, which accompany one in later life; and it enables me to look forward, enthusiastically, to the future, whatever that has to hold. My hobbies and other interests range from vintage and classic cars (I had several Bristols et al), antiques, wine (I had a small wine business in the 1970’s-80’s), interior design, gardening, property refurbishment, classical music, cookery, current affairs. I enjoy good company, and sharing good food and wine; that’s what makes me happy! On reflection, in this momentous year, I consider that I have had my fair share of successes and failures, which must add up, in my view, to a life fulfilled. Without taking risks, you achieve nothing, which life can afford. As Churchill said: “success is moving from failure to failure without loss of enthusiasm”. I subscribe to that!

Michael’s Polio Story

 

I got polio while I was at a Butlins holiday camp (Skegness) in about 1946 (I think from the swimming pool). My parents only hope, so they were told, was a new drug that was being tested at Bart’s hospital in London (streptomycin). As the NHS didn’t exist then they had to pay for an ambulance to get me to London (maybe they got help from Butlins but I don’t know), anyway I ended up surviving but with callipers on both legs. The result was that I missed almost all my early education so my parents paid for me to go to a primary school in Balham. From there I went to a grammar school in Battersea.

 

I had an interest in motor cars and I got a job at Jack Barclays (the Rolls Royce dealers) from there a friend and I set up our own business repairing Rolls Royce’s and Bentley’s. Like many partnerships, we parted company, but I continued the business for many years. I sold the business about 12 years ago and in retirement assisted people with problems with their cars until about a year ago when Post Polio Syndrome (PPS) caught up with me.

 

My GP sent me to our local hospital, St Helier, where I was told that unbeknown to me I’d had 2 mini strokes and was advised to “get a walking stick”. I am now in the process of being given advice on how to move forward from the Lane Fox unit at St Thomas’ hospital so we wait and see.

 

The stories I’ve read about since joining you have made me think that basically you need to do as much as is comfortable with you. I hope my story is of interest to you.

Di’s Polio Story

 

My polio story is without doubt very similar to many others. I contracted polio just before my fourth birthday in 1952 – I am now 75. I am definitely a half glass full person and I feel I owe that to polio. Some might find that a strange comment, but life has not always been easy and like many polio survivors has made me stronger, more determined, a type A achiever and defiant!

 

Like many others I had long stays in hospital, operations, callipers, bedtime splints and built up shoes. I was one of the lucky ones and made a good recovery and by eighteen had discarded all assistive aids. I married young, had two children, obtained a degree at 39 and went into teaching. In my late forties I was diagnosed at the Lane Fox Unit with post polio and for the last 27 years have been back in callipers. I was widowed at 58 but in my Motability car can still visit friends and family. Life has become more sedentary, but I can fill my time in with a variety of hobbies, mainly playing bridge, which seems to be keeping the grey cells working. However! It is being reliant on outside agencies where problems occur!

 

My blue badge blew out of my car six weeks ago, never to be seen again, when I opened my car door in a gale! I immediately went online to order a replacement, paid £10 and am still waiting. My walking is limited so not being able to park on double yellow lines has been a real nuisance. The same week the foot dropped off one of my callipers! That took five weeks to get repaired – luckily I have a spare one. Agencies who are meant to help disabled folk do not seem to understand the urgent necessity of our needs. Delays can cause great anxiety. The post polio clinic which I used to attend at a Liverpool hospital has closed. As polio survivors our physical needs are not understood and this in turn puts a great toll on our mental and emotional health. We are our own ambassadors and facilitators and that takes a lot of our energies and strength. I know I am very grateful to the volunteers who work tirelessly in producing Post Polio Matters and running the Polio Survivors Network. – Di Brennand

MESSAGE FROM OUR CHAIR

 

The Long and Winding Road

 

Firstly, I want to welcome the new clinical pathway from the BPF (Please see page 22). I hope we all can get behind this and lobby wherever and whenever possible. We have always needed an holistic and informed polio service and whilst it is still a dream this a step on the way.

 

That said, implementation is everything and something that sits on a shelf does nothing and I have had plenty of experience of that. Realistically we have an NHS in crisis both in terms of demand, personnel, funding, and infrastructure. Change is something that will take a decade or more to fix, and only then if we all agreed how, and start tomorrow. The reality is that achieving this ideal will be, to quote a Beatles song ‘ A long and Winding Road’.

 

Physical and Emotional Pain

 

I want to focus on one area. That is pain, not just physical but emotional distress and the psychological. It has often occurred to me, both as a polio survivor for 68 years and as a psychologist for over 35, that this is an area where we often find ourselves met with ignorance and a lack of understanding in the face of our, often unusual history and particular life experiences over decades.

 

Pain is a huge subject area, both complex and highly individual and subjective. Yet we all experience pain throughout our lives from our first breath to our final breath. Indeed, it is part of everyday life. It’s normal, and its function is to alert us to threat and protect us from harm. But how we experience it varies and that is true whether it is an emotional trauma, physical injury, or illness or of all of them. It is the interaction that makes it so complex. Ultimately it has such an impact our quality of life, our ability to engage and be our true selves and who we want to be in the world.

 

From my early childhood polio rehab days to now as I age with PPS, like many of you I’m sure, I have had my fair share of pain, both physical and emotional. I’m not sure the physical pain was the most difficult. Pain that is short term, predictable and understandable is unpleasant, even difficult, but perhaps easier to deal with, than ongoing chronic pain and or emotional distress. Pain isn’t just a physical experience, though we may often perceive it to be. But its impact is mediated in the brain by fear, anxiety, memories, social interactions and more. It also differs from person to person; it differs within the same person differently at different times or at different stages of our life and circumstances. The pain when I was having my spinal fusion in the RNOH was often intense, but I was 17, informed and had a long-term relationship and faith in my surgeon. My cognitive view was that this was a gateway to a better future, and indeed less pain. Whether that was objectively true, or my assessment of the risks were over optimistic is by the way, but my psychological approach and belief and sense of control mitigated my fear and experience of the pain. That is a very different situation and situation when having pain at the other end of my life.

 

The Pain Cocktail

 

The pain, be it emotional or physical, that most of us meet in our lives is not well served by pharmacological treatments. Most medications or analgesics have unwelcome side effects, whether for mental or physical distress, and on their own often only provide partial help. This is especially true of what’s available for chronic pain. Pain is perhaps a kind of cocktail made up of the biological perception of pain in our bodies and the emotional and psychological distress that we experience living in the world and that is ‘our’ unique and individualised pain cocktail. As disabled people we surely have first-hand experience of what that means.

 

The Polio Rehab Legacy

 

My particular interest has always been focussed on how as lifelong disabled people our psychological, emotional and social integration needs are often marginalised, especially as we age. This was no more starkly exposed than during the pandemic and how ironic that is for us as the survivors of the polio pandemic. Part of our ‘cocktail’ is that back in the day, as polio patients we were indoctrinated into a medical model with an almost unswerving faith that doctors, medical professionals and the NHS were always right and if we pushed ourselves to the limit, we could overcome anything and even ‘pass’ as non-disabled and be part of the world ‘as if’ our physical impairments and psychological experiences hadn’t happened or were at least invisible or irrelevant to how were to be perceived and treated in the world.

 

For many of us it worked for years, if not decades. But now as we age with PPS and the usual other age-related conditions, we experience age-inappropriate loss of function, loss of income, social contact, and even appropriate healthcare. This just at a time when society is in flux and we need better access and holistic health care, not box ticking and generalised care. This is as true, if not more true, for the psychological side of living with PPS which can trigger us going down all possible rabbit holes hoping to find ‘The Answer’ to our physical impairment or pain.

 

Appropriate Psychological Support

 

My concern is that the type and availability of appropriately experienced psychologists and therapists trained in the real-life challenges of disabled people is sadly lacking. What is offered is often totally inappropriate for post-polio patients and polio survivors. The social context and real lived experience of those of us with a lifelong knowledge of polio and living in the world as disabled people doesn’t fit well into the simplistic reductionist psychological therapies and approaches on offer. Anyone who has encountered a telephone triage to ‘sign post you to an appropriate therapy service’ will know just how frustrating and often alienating and disheartening the experience can be.

 

Therapy for disabled and people with chronic conditions requires a broad experience of the medical and psychological world of disabled people. And it also requires a deep under the social context and a commitment to social justice for our clients and patients. When I see in the pathway – psychology – it is hard for me not to worry that the fundamental emotional, medical, and social issues that should be at the core of a psychological service for polio survivors is not appreciated. If we are subjecting PPS patients to the same reductionist and manualised approaches that are widespread, we will fail to meet the needs of PPS patients and others living and ageing with long term and chronic conditions.

How to overcome problems of getting weaker with Post Polio Syndrome.

 

I caught the polio virus in 1949 and was sent home after about 4 weeks in

 

hospital. I was unable to walk at first, so my mother started to rehabilitate me with daily exercises. Later she found a physiotherapist who was trained in the method developed by Sister Kenny, an Australian nurse.

 

I regained several muscles except for the left leg below the knee where the paralysis started. I was unable to walk for a year, and then I started walking with two crutches, then just one, and finally one stick. My endurance increased gradually, and I was able to attend school, university, and jobs in chemical laboratories. I studied Chemistry at university where I met my husband who was also studying chemistry. After graduating we married, and we had three daughters. I became a science teacher. Teaching was better suited to looking after children and I was able to stand all day, carry heavy books, teaching in science laboratories for 26 years.

 

Shortly before turning 60, I retired from teaching and trained as a chiropodist. My children had left home, and I was able to visit people in their homes pulling my heavy bag full of instruments and chiropody supplies on wheels which was meant for a suitcase. Luckily, I was also able to have a dedicated surgery in our home and see patients there. Gradually as I became weaker, I stopped visiting and became even busier with patients in the surgery. So much so that I would not even stand up from 9 to 12 and for several hours in the afternoon with patients following one another. I now realise that this was detrimental to my muscles. I also started studying for an Open University degree online which meant many hours sitting at the computer in the evenings. I now know that I should have been doing more activities to preserve my muscles instead of sitting for long hours. Having fallen down our wooden stairs three times I was forced to have a stairlift. The result of that is that now I am hardly able to climb the stairs. To try and remedy this I am now using a small stepping stool in the kitchen and holding onto the work surface with one hand and a sturdy chair with the other I try to step up every morning and evening. I started with just 5 repetitions and gradually increased it to 20. But I can only step up with my right leg. I am not persistent, so I tend to give up easily when I am tired in the evenings.

 

My balance is getting very bad, I need to hold onto a firm surface. Even when using two sticks I don’t like to be far from something to hold onto or lean against. To be able to carry heavy pans, serving dishes, or anything to go in the oven, I have a small stool on castors. This is also useful for getting things out of the fridge, putting clothes in the washing machine, and taking them out, cleaning the floor, vacuuming, and as an extra chair. It is important to be able to stand up from it safely, holding on to a kitchen chair and the table. A few times I have missed standing up, tried to sit back on the stool, and ended up on the floor! A very embarrassing situation.

 

My greatest problem at present is standing up. My husband fixed 4-inch raisers on the settee and on our bed which helps a great deal. I need to pull myself up with one hand while pushing up with the other. I also have to take care not to damage my shoulders when doing this.

 

The lesson from all this is: keep walking, use the stairs, and do exercises as long as possible to preserve muscles but do not to get overtired because that damages the nerves and muscles.

 

By Zsuzsanna Snarey

Optimistic Aly

 

Hi everyone, optimistic Aly here.

 

After contracting polio when 6 or 7 years old, my post polio journey has not been easy, as I’m sure some readers have also experienced. It’s only in recent years the medical profession are learning about the long term affects of Polio.

 

I’m in my mid 70s now but was one of the 300 children back in the early 1950s who were chosen to trial the, now successful, Salk vaccine used today. The metal and leather callipered boots worn for 18 months were a small price to pay for my life. Anyway, once mastered, they enabled me to inflict substantial damage on anyone who took the Mickey as they had metal side rods, so not all was doom and gloom.

 

Other children trialling the Sabine and placebo inoculations did not fare so well at all. We lucky survivors will never forget them.

 

Two years ago, misfortune struck resulting in admission to DORSET COUNTY HOSPITAL and two major bowel surgeries in 10 months. The first nearly costing my life, when the obstruction burst hours before the scheduled operation. My internal muscle power diminished rapidly around this time which left much tiredness and general lethargy.

 

At a prior consultation, I explained to my wonderful NHS Surgeon my fears that were solely around Anaesthetics. I asked if I could meet the Anaesthetist first. Polio as we all know, affects our already weakening muscles. The heart and lungs are muscles, anaesthetics disable muscles. I wanted to be sure of what these guys knew about my polio beforehand.

 

I had an amazing hour with the Chief Anaesthetist and came out feeling super confident in my medical team. We also discussed my heart problems, hiatus hernia, aneurysm, scoliosis, diverticulitis, cervical neck bone collapse and arthritis…among other stuff ….and their correlation with polio. I was complimented on the fact I was still alive and in such good spirit. We both learned a lot about how ones mind can overcome a lot of pain and also that occasional feeling sorry for oneself.

 

After the first operation, hastier there, due to the obstruction bursting, confidence crept in on seeing that handsome anaesthetists face. It does help if they’re nice to look at! Feeling relatively I calm I was put out cold in 20 secs flat with my individual “specially prepared” anaesthetic. Trust your anaesthetist everyone. These guys KNOW what they are doing.

 

Recovery was good I’m told, but I do first recall crinkling sounds on coming round, after which I CLEARLY recall fleetingly looking at the handsome man (anaesthetist number 2) in the recovery room, at bottom of my bed. He was central to a clutch of about 5/6 uniforms calling for more rescue blankets. The crinkly space age silver stuff with warm water pockets all over them. As said above, I have other conditions and my B/P sadly went bit low. Its a family trait. Brilliantly upfront in any crisis, fall apart after…. as I laughed with the anaesthetist earlier. He listened and came prepared for just that in case.

 

Later next day on ward it was more comfortable playing with the bed zapper to lie in a Z shape on my back to prevent sliding. Turning gently later in the day, was doable but uncomfortable and slow. More of a slide for first 48hrs, due to 3 of the 7 of illnesses above. Nurses have slide sheets to turn people as well…. much easier as it turned out.

 

All the above aside, day to day I noticed how the post polio symptoms are getting more debilitating as age encroaches. Good days 200yds upright walking, other days 70 feet if lucky. Aging naturally compounds these existing mobility problems. Occasionally I get out of breath easily and use a stair lift to get up stairs some nights. Exercising any muscle nowadays also causes muscle fatigue quicker than it used to so my GP monitors lung capacity annually. I have crutches if I need them as they are useful to lean on when muscle fatigue hits.

 

One other thing noticed of late is the occasional kind of excess saliva I can get in my mouth. Regardless of sitting or laying my brain doesn’t warn the swallow reflex quick enough. With not much warning it feels like something went down wrong way and coughing occurs. If I rapidly get upright swallowing hard between coughs helps clear it all. Does anyone else have problems with their swallowing muscles?

 

Anyway lovely to read each of your own stories. It makes us feel less lonely and dismissive of life knowing we share a common bond, I think. WE ARE ALL SURVIVORS in our own way. My own mantra is not to make a drama out of a crisis on a day to day basis, do your best for you and NOBODY else. Find something you CAN DO, rather than feel sorry for yourself and concentrate on what you CAN’T DO. We still have a life to LIVE, we just need a smidgen of adaptability don’t we?!

Thank heavens I caught polio in the ’50s.

 

If I had caught it today, I can’t imagine the current NHS being able to cope! Today’s superior graduate nurses wouldn’t be able to cope with the high level of care we needed around the clock.

 

In the ’50s, the NHS really was ‘the envy of the world’. Every Friday my surgeon, J.I.P. Janes, would sweep down on his ward round, heading up a swarm of foreign medics come to observe (and pay) to learn from Stanmore National Orthopaedic Hospital. Today, the only NHS hospital where I come across overseas doctors here to learn from the NHS is the Royal Brompton Hospital.

 

Recently, I had a long stint in our local hospital, the 1,000-bed John Radcliffe. A dirty injection needle into my eye had made me blind. Looked after by trainee nurses from Oxford Brookes, I was interested to see how today’s nurses performed. At the start, they impressed me with their competence taking my blood pressure – every four hours they would wheel in a machine and plug it in – all going very smoothly – then read off the figures produced.

 

Then things started to unravel, the readings suddenly went sky high and I was alarmed – the nurses hadn’t a clue what this meant and weren’t about to do anything to discover what these showed. Today’s nurses aren’t expected to be curious, and I began to understand how the lack of curiosity enables scandals like the Lucy Letsby case, and many others, go undetected for so long.

 

Eventually, it was an Agency nurse who let the cat out of the bag; apparently, the Ward sister in charge of drugs had forgotten to order blood pressure tablets, and others on the ward had the same symptoms – but I was the only one who queried readings.

 

I remember the cheerful way the nurses at Stanmore coped with our problems, however basic. Catching another hospital bug this time I threw up all over the floor. My bell summoned a nurse, who gave a horrified scream and told me “You’ve dirtied the floor. I need to call a cleaner to clean it up”. Had no-one told her nurses have to deal with life’s basic problems, however gross?

 

Doctoring today is by remote control. The nurse takes a photo of you, sends it to the doctors, and back comes their diagnosis. This was taken to the limits when one Friday Dr. Joel (it’s all First names in today’s NHS) actually appeared in my room, saying he had come to take some blood tests. He wasn’t much good and gave up, saying he would be back on Monday.

 

Monday produced a cheerful Dr. Leo, who popped in to give me the good news that my blood test results were fine and was rather put out when I queried his diagnosis. Off he disappeared, never to be seen again – this was the norm in my ward; ask a nurse a question, and off she would go to some distant hidey-hole lost forever.

 

|One does wonder why some nurses bother to go into the profession today. When I was admitted to the ward, I was delighted to be shown into a single room (being highly contagious had its benefits). I waited for the Ward Sister to come and ‘welcome’ me – but no one came. After a while, it became obvious that infection control training was sadly lacking in those supposedly looking after me, so I fumbled my way down the corridor to find Sister’s office.

 

Once there, a voice identified itself as a Sister, so I started – only to be stopped by the voice saying “but I don’t talk to patients”.

 

Sadly, it seems doctoring by remote control is going to be the norm in today’s NHS. Although warned by the Ophthalmology Dept. that I was allergic to Preservatives, backed up by me when

 

admitted (but who takes note of patients?) the dreaded Ward Sister in charge of drugs had ordered the cheaper version of the antibiotics prescribed for me. Yes, you’ve guessed it – full of preservatives. I wake up one morning with a face aflame and burning itching skin all over my body.

 

Nurse sends over a photo of some of the rash – but no doctor appears. Eventually back comes a message to say the photo showed my ‘rash’ was only a bruise! The Dermatology Dept. did send down some cream for me to use, which promptly got lost because Ward Sister didn’t write this down in the drugs book.

 

So, I self-prescribed and got my brother to buy some La Roche Posay products, which did the trick. I have booked a follow-up appointment at Guys Hospital in London, via the NHS Patient Choice scheme. It will cost the NHS as I will also need hospital transport, but this might make the hospital look more carefully at its procedures. Oh for the days of the caring nurse – I was very lucky they were around when I was being treated for polio.

 

I am NOT having a go at the majority of today’s nurses who look after me beautifully. Just moaning at the way nurse training is becoming dependent on ‘remote control doctoring’.

My Experience – Sylvia

 

My name is Sylvia.  I was born in 1948 and contracted Polio in 1950/51.  I was living on the Isle of Wight and, I believe, along with my slightly older brother, one of the very first people on the Island to catch polio.  I lost the use of one of my legs.  After a spell in the isolation hospital, I recovered and certainly within my childhood memory was symptom free.

 

I went on to be a keen tennis player for over 19 years, playing daily during the Summer and several times weekly on hard courts during the Winter, until at about the age of 42 I noticed that my legs were changing.  My right calf was diminishing noticeably, although was still strong enough to support me.

 

Eventually I could no longer reliably run in all the directions required for tennis and I gave up.  I then joined a golf club and played 18 holes regularly, usually three times a week until I no longer had the stamina to walk the course and so five years ago, I gave up golf.  I then started playing lawn bowls two or three times a week and short may bowls during the Winter.

 

Over the last few years my “weak” leg has felt less reliable and I’ve been using a walking stick when out and about and this year find I now must use it when playing lawn bowls.  Similarly, over the last few years I have felt unsteady with sometimes a loss of balance.  I cannot walk far without considerable pain, although I’m not sure whether this is because of the late effects of polio or other problems with my spine for which I take prescribed pain medication.

 

To sum up, everything from my strength to my eyesight, endurance and energy seem to be reduced.  I have recently purchased a mobility scooter with which I can go a bit further afield – in fact have just returned from Austria where I was able to explore, amongst other sights, those of Vienna and Salzburg.  Thanks to coach travel company B D for transporting my mobility scooter and making this possible.   My brother was a year or two ahead of me in his debilitation and requiring a mobility scooter and stair lift (so fat I’m still managing with the banister).

 

I hope to soon have an appointment with an NHS neurologist, interested in PPS, as I would so love to know what I may attribute to PPS and what the future may be expected perhaps to bring.  I wonder if any of my experiences will strike a chord with others.