Experiences

In 1958, at age 11, there was suddenly a steep downturn in my mental and physical ability. There was no obvious reason why that happened. My parents thought that the simultaneous pains were probably “growing pains” as the only real pain I had was severe cramps in my legs, particularly the left one.

 

My parents were the type who would stop at nothing to find out what was wrong. They had nearly lost my sister to illness during the war and were determined not to go through the same concerns with me. However nothing was diagnosed, the pains eventually eased after a couple of years and my school work and physical activity gradually improved, although I played rugby rather than my first love football as I was somewhat slower running and I had developed a slight limp. My school work was not as good as it should have been with particular problems at exam times. Previously I had been very good at this although I say it myself!

 

Generally speaking, despite several health problems, I managed quite well until after university and starting work, I began falling especially when walking over uneven ground. When my left leg started aching again, I was advised to see a specialist who had, by chance, considerable experience with polio both at home and abroad and, after examining me, came to the conclusion that I must have had polio some forty years or more earlier, at the time when the leg pains started at age eleven.

I was advised to wear an orthotic leg brace and other supports which I did for several years.

 

When my left knee was replaced, my surgeon said that in the process, he would be able to lengthen my left leg which subsequently allowed me to stop using the brace and improved my mobility but the aches and pains continued because of what I now realise was PPS.

 

There was, and still are, constant mobility problems. However, I think myself extremely fortunate to have survived sixty five years without many of the considerable challenges that most polio sufferers have had to bear. In recent years, I have suffered from sepsis and a mild stroke and recently have had a shunt fitted on my brain as treatment for hydrocephalus. I mention these last three complaints only because my non-medical training makes me wonder if they, in any way could have been promoted by my earlier polio. Has my central nervous system suffered because of polio? Perhaps other PPS sufferers might have a view on this. Nevertheless, I consider myself extremely fortunate in that polio did not have more serious implications for me.

 

I enjoy being a member of the Lincolnshire branch of the Fellowship, despite not having been to meetings recently as my recent operation means I can’t drive for a while. The secretary is very good at keeping me informed.

Hi, my name is Maureen l am a polio survivor. I contracted polio in the early 1950s – in them days doctors were very wary of telling the patient or their parents what they had / diagnosed with. I can remember as a small child of 3 years of age being in hospital for long spells that seem to go on for years in and out of hospitals all the time. Eventually from the age of about 8 they discharged me and told my parents what l had been suffering from – l carried on with my life as a child doing what children do but l always walked with a limp which was noticeable to other children and adults.

 

Post Polio Syndrome became a problem to me in my early 40s when l started to fall or trip over for no reason – after watching a documentary on TV about the latter stages of a Polio Survivor l realised that it was me.

 

After visiting my GP, she arranged for me to have an assessment with a consultant at Kings College Hospital in London who diagnosed PPS.

 

I will now jump to my current daily life and how it has affected me now. At the age of 74 l have so many problems which l have to come to terms with. My right foot / ankle / leg has completely deformed, and l walk over on one side – my weight has increased as not being able to walk without pain and aids – swallowing is also a major problem where l choke on food / fluids if not chewed or swallowed completely.

 

Twice yearly l have steroids injections in my feet and ankle but my Consultant recommended that l have surgery as my foot is now bone on bone. With arthritis in both feet now on top the disability l have, life is not as it should be in my retirement years. My medication is Gabapentin 500mg x 4 times daily – Co- codamol every 4 hours for the pain, plus various sprays / roll ons / ointment / on feet to relieve the pain.

 

It was 1953, I was five years old and in my first year at school. I have a clear memory of trying to get out of bed and my legs giving way under me. Our GP had seen me the previous day and told my mother to give me a couple of aspirin and I would be fine. I do not recall much of what happened after that. The paralysis was confined to my legs and I do recall being taken out in a pushchair but I was cared for at home so it must have been a relatively mild condition. I was deemed to have made a good recovery but I became a sickly child with lots of pain in my limbs. When I returned to school, I felt detached from my surroundings and the other children. I was often in trouble for daydreaming and looking out of the windows, wishing I were somewhere else. I seemed to be tired all the time and cold. I scraped along at school, just getting by.

After leaving school I had a succession of jobs and decided to redress my lack of education by pursuing an Open University degree. Married at twenty-one I had the unstinting support of my hardworking wife, who was a nurse. I secured a post at the Natural History Museum in South Kensington in 1974 and commenced a rich and fulfilling career, initially as an assistant curator and for the last 14 years before I retired as the Biodiversity & Conservation Officer in the Zoology Department. I ran international development projects throughout South and tropical Southeast Asia, mostly based on surveys in tropical rainforests. I supervised PhD students and postdoctoral researchers and followed my career dream. Problems that were later recognised as PPS began to cause problems. Episodes of brain fog were the most alarming because I had no idea what the cause might be, and I avoided public speaking, lecturing and conference presentations. Episodes of fatigue had long been a problem but they became overwhelming. I was still riding high running international projects but mobility became an increasing problem, with leg pain and weakness. Following a serious road accident on the borders of Vietnam and China in 2013 it became increasingly clear that I could not continue. All field work ended. I continued at the Museum for a further three years before retiring.

In 2021 and after 50 years in our much-loved home, we realised that a three-storey house was no longer suitable. We moved to a bungalow close to shops and amenities. It was a big step to take but proved to be an excellent decision and perfect for our current needs. I still contribute to scientific papers and write articles but productivity is low, I work around the fatigue brain fog and pain. The most important thing that I learned from the Lane Fox Unit at St Thomas’ Hospital was to pace myself and be careful to work within my limitations. It is frustrating but the only way.

In memory of John Graham De’Ath, Air Commodore RAF (ret’d), MBE, MA, FIMgt, who died peacefully on 10^th April 2023 aged 90.

 

John was an accomplished athlete and Olympic triallist before suffering from polio in his early twenties. After making what appeared to be a full recovery, he managed to return to a high standard of short and long-distance running and squash, among other sports.

 

In 1951 he joined the RAF as a Cranwell cadet straight from Whitgift Middle School in Croydon and, as an officer cadet, was selected to line the route at the 1953 Coronation. His RAF postings took him all over the UK, as well as Malta, the United States and Germany.

 

John retired from the RAF in 1986 to take up a post as Home Bursar at Jesus College, Oxford, where he had a happy and successful second career. During this time he developed post-polio syndrome, which eventually forced him to retire from his College post. During his time in Oxford he was heavily involved in various sporting organisations, including the RAF Athletics Association, Achilles Club, Oxford University Athletics Association and Oxford University Air Squadron. He was an active campaigner for women’s sport.

 

Despite being a wheelchair-user from 2010, John continued travelling around the world with the help of his wife, Sonia. Sports, wine, music and travel were his passions.

 

He passed away peacefully on Easter Monday in a care home, after several happy days spent with his family, singing along to favourite songs, joking, and smiling to the last.

 

 

THE FOUNDING OF THE SCOTTISH POST POLIO NETWORK (SPPN)

 

In the late 1990’s I began to experience the late effects of polio. I wrote about this time in my book “A Balanced Way of Living; Practical and Holistic strategies for Coping with PPS”. This is how I felt then ;

 

“ I had always led a very active life in spite of having had polio as a baby and wearing a caliper as a result of the disease. Even though I managed to achieve a great deal there were always more hurdles to overcome – gaining a degree, travelling, learning different skills including those involved in becoming a mother; all of these experiences

 

were rewarding but there were always, metaphorically speaking, more mountains to climb! When I was 30 I embarked on training to become an acupuncturist and after 3 years gained my license to practise. Working full time with 4 kids under 10 was challenging but did not phase me – I even found time to go swimming every other day and gave time to various committees! Of course I was on a merry go round that got faster and faster until it spun out of control. My poor old body was not prepared to keep up the hectic pace I had set it and with the symptoms of PPS becoming too strident to be ignored, I finally had to let go of pushing on and give myself a break.”

 

At the time of writing those words at the end of the twentieth century, thanks to the techno revolution that had recently given us the internet, I was able to gather much information about PPS but still felt very alone in my search for answers. As I spoke to other polio survivors and recorded their stories to include in my book I began to realise that there were many of us out there and that we needed to get ourselves organised!

 

Billy was one of the first polio survivors that I interviewed for my book and I wrote ;

 

“Billy from Glasgow, is also finding a need to fight on behalf of polio survivors and he was in the process of setting up a polio support group when I spoke with him.

 

He had only recently heard of PPS but had been struggling with his health for years. Finally, due to an article in a local newspaper, he was relieved to discover that the label of PPS could explain the underlying cause of his deterioration. When Billy contracted polio at 3 years old, he was put into an iron lung and when he came out it was to find that he needed to wear calipers on both legs. As he got older he managed to get by with only one caliper and being the fighter that he is, he “went into automatic” as he put it, working hard as a housing manager for the local council and bringing up 5 children.This tendency to get on with life and take on its challenges without a moment of hesitation, is by no means curtailed now that Billy finds himself in a wheelchair in his forties as a result of PPS. He is “angry and annoyed” to find that many health professionals have not heard of PPS and wants to change this for himself and other polio survivors by campaigning for more awareness of PPS.”

 

Meeting with Billy and hearing his story was in fact the start of the SPPN although neither of us realised it at the time!

 

Thanks to the sterling work of Hilary Ann Boone (Hallam as she was then) and through her organisation the Lincolnshire Post-Polio Network – LINK-PIN–I connected with another Scottish polio survivor– Agnes Walker from Edinburgh. Agnes had a wealth of experience when it came to practical organisational skills and it soon became clear that she and I and Billy should all get together and see if we could create a support group of some sort. And that was how 20 years ago the core group that became the SPPN met to share experiences as polio survivors with PPS and also to have a laugh, a blether and light refreshment at a very cosy pub just outside Stirling. A few more local polio survivors members joined us from Glasgow and like Topsy our group grew and grew!

 

As time went by we formed a committee and thus the SPPN became a registered charity. From those very early days we decided not to be a “moan and groan” group. Although we were there to share our frustrations with regards to living with PPS and also with regards to the lack of support from the medical world we decided at that first meeting that we were not there to have a griping session! Our commitment from the start was to campaign to raise awareness of PPS and to act as a source of advice for new and existing members, other polio survivors and their families. Furthermore we were keen to campaign for a central “one stop shop” to provide treatment for PPS. In effect our aims and objectives were and still are; to give people who have had polio the most up-to-date information about Post Polio Syndrome, to inform medical professionals of best practice, to campaign for recognition of Post Polio Syndrome and to ensure the model of best practice and conservation of mobility is practiced.

 

In all of this we were very much supported and advised by the very helpful Dr Richard Bruno, a research and clinical psychophysiologist trained at the New York State Psychiatric Institute. In 1984 Bruno founded the International Post-Polio Task Force, which promotes PPS research, education and treatment in 25 countries. Dick Bruno had helped me hugely to write the “science” part of my book so it was natural to ask him to be the patron of the SPPN and we were delighted when he agreed and he has continued as patron of the organisation to this day.

 

The founding of the SPPN was exciting stuff and I loved being part of it all. However eventually I decided I could no longer remain on the committee –I needed to “walk my talk” and stop taking on too much –again! With family and my acupuncture practise commitments I needed to let go of all that I had helped to initiate and it was a wrench but it had to be done. Nevertheless I feel proud that the SPPN continues through the hard work of so many good people.

 

In 2005 the SPPN took its campaign to the Scottish Parliament where it became well supported for many years by the marvellous MSP Margo MacDonald until her death . She is sorely missed and no one has replaced her in our challenge to get better support for polio survivors in Scotland. Now with the Covid pandemic taking top priority I fear our voices will not be heard by those in power who could help. And as time goes by we survivors of polio are fewer. But on we go and every year the SPPN holds a conference (not this year due to Coronavirus!)to which many polio survivors come and hopefully they go away feeling advised, informed and supported. From the day when Billy, Agnes and I met together and decided we needed to do something to help ourselves, the SPPN has put information about PPS out there to help those experiencing the late effects of polio. It also informs medical professionals of best practice –some of whom were not even born when polio epidemics were around and thus need some input from us polio survivors! And thanks particularly to Hilary Ann Boone for being the link that connected me with other Scottish polio survivors all those years ago!

 

Vicki Mckenna is the author, as acupuncturist and polio survivor of “A Balanced Way of Living; Practical and Holistic strategies for Coping with PPS”.

 

To purchase a copy see www.postpolioinfo.com/balanced_way.

Lynne – One of Our Amazing Members

 

Hi there, my name is Lynne Morton I am 53 years old in November. I contracted polio when I was 13 months old, in 1967 I was given the polio vaccine the very next day I was rushed to hospital put into isolation and diagnosed with polio. I contracted the disease from the vaccine! All of this is in my medical records; apparently it was tested in the lab and was found to be contaminated so basically the thing that was supposed to stop me getting the disease actually gave me it!

 

I have managed to live a good life; I have 4 children and a beautiful granddaughter who keeps me on my toes and another grandchild on the way.

 

I’ve tried to not let the disease stop me too much but recently I am finding it very hard as I feel I am just not taken seriously in regards to my symptoms, and post-polio syndrome seems to be a taboo subject in the health department. I know many other polio survivors are experiencing the same as me, but we will soldier on and hopefully one day make the practitioners see this is something to be taken seriously.

 

 

An Interview With  Marion Carlisle

Q:        Tell us a little about yourself and your polio journey

 

My mother is very sure I had polio when I was 2 (1960).  She said it was the worst week of her life, though I was not hospitalised. I recovered with slight walking impediment for a year.  Then apparently nothing until I was 39 when symptoms started: unexplained temperature rises, progessive fatigue.

 

Q:        When did you first realise you had PPS?

 

I self-diagnosed P.P.S  in 2003 (age 45) after reading Dr. Bruno’s ‘The Polio Paradox’.  So much in his book rang bells. There was the gradual onset of unexplained symtpoms in my late ’30s. The fact that all blood tests fell into the ‘normal’ range and yet I could hardly function at all sometimes.

 

Q:        How did you get a diagnosis?

 

I’ve been living in West Wales since 2002 and haven’t had any official diagnosis or seen any expert in the field.  My local GP accepted my self-diagnosis but apart from prescribing Q10 on the NHS, I’ve had no medical help.

 

Q:        What has helped you to cope?

 

I’ve been following protocol for M.E. / C.F.S patients, ie pacing, supplements  and a low carb / high protein diet for many years.  Accepting limitation rather than fighting it has been a key.  Although I don’t need physical aids and can walk OK,  new arm weakness means I don’t lift heavy things – including a half-full kettle.  A background in meditation, being in the ‘here and now’ as much as possible helps  me to accept what I can’t change.  Perhaps mental fatigue is the most challenging – not able to read or engage socially when I’m very exhausted. Then re-charging the batteries, alone and doing nothing is the only help.

 

Q:        Is there anything that our members can help you with currently?

 

Yes, I wonder if any other members have experienced constant tingling sensations, like pins and needles.  This tingling started just in the soles of my feet, then progessively moved up my body.  This used to disappear with prolonged rest.  Now the tingling never goes away and is my whole body, including my head.  I also experience a strong pulse in my adrenal area, especially in the night and on waking. There seems to be no medical reason for this.

Q:        What one piece of advice would you give to other polio survivors?

 

I know I’m not facing challenges like many polio survivors. I can walk and have been working part-time musically for the last 10 years, finding more strength by sticking to the diet and supplements protocol.  So advice?  Not really.   I’ll just say that feeling empowered – in whatever way that means for a person – is vital. Celebrating ones talents, however small.  Enjoying the world around – the elements, the natural world and being able to receive and give to others.  Also spiritual gifts are so important.  Through undergoing limitation (not something I’d wish on anyone), I’m more receptive to the essentials in life.  There is a silver lining in having to let go ambition!

 

 

 

An Interview With … Val Scrivener

 

Tell us a little about yourself, the person behind the photocards.

 

Bedford has always been my home and, until the age of 17, I suppose I lived a fairly uneventful life. I loved sport and, even in my first school was winning races on sports day (winnings were a 2/6d postal order which bought me a book at our local bookshop). I high-jumped, was in the netball team, swam and also played badminton at our local youth club. I was just beginning to enjoy going to the twice-yearly youth club country dances when polio struck, paralysing my right leg. I returned to school (now in VI form) with a stick. Sport, gym and games were out and I began to feel that I fitted in nowhere and became, I suppose, somewhat isolated knowing that my former friends and team-mates were spending their lunch hour outside practising.

 

My father was quick to see the void in my life and one day came home with a box camera. Never did it occur to me at the time that his thoughtfulness would lead to a lifetime hobby. Much later in life I went along to the local camera club to learn how to use my newly acquired, second-hand, SLR camera and there I became fully launched as an avid lover of photography. With my late husband, John, I began some weird and wonderful travels around the world in my school holidays as, by now, I had begun teaching at a local lower school. I now restrict my travelling to the UK following several falls, but there is so much out there to photograph if you look for it.

 

What makes you passionate about supporting Polio Survivors Network?

 

I suppose the first and most obvious answer is to say, ‘Because I had polio.’ I, like many others, thought over many years that, although I have never since been able to partake in sport, I made a pretty lucky recovery. I could still walk and was able to lead a normal life. It was a bit of a shock when things began to deteriorate and I was told that the neurons boosting my muscles were only working at 10 percent capacity and that being overactive was simply wearing the muscles away.

 

I admire the research that seems to be taking place in the USA and I agree with comments regarding the lack of knowledge in this country, so few of my acquaintances had any idea that problems could resurface in later life once ‘recovered from polio’. It is brilliant being updated with the knowledge of recent research via ‘Post Polio Matters’. I am hoping that I am able to make the AGM this year as I feel meeting up with fellow members is very much like meeting up with family.

 

What gave you inspiration for the beautiful photocards sold on behalf of PSN?

 

I have, over the years, made special cards for friends and some time ago I had the thought that I could also make and sell cards to raise money. Being a PSN member my mind went immediately to this but I knew that I would have a better chance of selling them locally, to people who knew me. My local church seemed the ideal place to set up a pitch but in order to sell the polio cards I felt that I should be doing the same for the church. This I do once a month but it all takes time as I take the photos, print them, cut the prints to size, print details on sheets of card, stick the photos on the card and do any necessary trimming.

 

How can we place an order with you?

 

You will find the details on the back of this newsletter or on the PSN website. The orders will arrive in packs and you may ask specifically for a mixed pack/a pack showing animals / transport / scenery / flowers / cards suitable for men – it’s your choice. I can then, at the time of ordering, give you the address to which you send a cheque.

An Interview With … Verite Reily Collins

 

Tell us a little about yourself and your polio journey

 

My father served in the Royal Navy, and we were all excited when he was appointed for three years to Turkey. Istanbul was a colourful and fascinating place as a teenager, but it came to an abrupt end when I caught polio. In those days the ‘Military Covenant’ was taken seriously; I was flown home and sent to the Royal National Orthopaedic Hospital at Stanmore (normally it was a six-month wait to get in).

 

My first day there, I was examined by the Great Man, Prof. Seddon – then one of greatest experts on polio. Gently he told me “you may never walk again”. I told him I had no intention of staying in hospital – which annoyed him as it was his pride and joy – and he immediately passed me over to the care of his most junior doctor, J.I.P. James. Mr James and I got on like the proverbial ‘house on fire’; saying “it can’t hurt”, we tried out different ideas, and I walked out of Stanmore.

 

When did you first realise you had PPS?

 

I had a vague idea, so asked Hilary. She told me all about it, gave me enormous help, and I joined up as a member of Polio Survivors Network (PSN)

 

How did you get a diagnosis?

 

Theoretically, I’ve never had a diagnosis from an expert – but then there doesn’t seem one around in today’s NHS. The NHS website has wiped polio off its pages, and now there is only information about PPS. Anyway, what Hilary has put together is good enough for me.

 

What, in your experience, is one of the larger issues facing polio survivors currently?

 

Ignorance. I now call in to play acting techniques learnt at school, and when a doctor or nurse lectures me “why didn’t you have the polio vaccine” I burst into crocodile tears, very loudly! I am fed up with such crass comments, and find tears the best way of putting across the fact that we caught polio before Salk produced his vaccine; my mother was so frightened of polio she would have been first in the queue if there had been a vaccine, and breathed a sigh of relief when Dad was appointed to Turkey as in those days it was supposed to be polio-free.

 

However, ignorance amongst nursing staff is rife, and recently I used my savings to pay for an operation privately; the Pre-Op. Assessment Nurse at Chelsea and Westminster Hospital wouldn’t arrange for me to see the Anaesthetist before my op. and I was scared of a repeat of the horrendous problems I had had when an Anaesthetist from The Royal Marsden hadn’t administered the correct dosages, even though I clearly remember telling her twice I had had polio. I had the operation privately, saw the anaesthetist for a good half hour a week beforehand, and sailed through it all. Worth every penny!

 

What one piece of advice would you give to other polio survivors?

 

Belong to PSN. I find the Polio Matters newsletter always has two or three things I have ringed for action or to follow-up.

 

What simple change would make the NHS more user-friendly for you?

 

To follow the same protocols as most European hospitals. In Europe I would phone the consultant for an appointment; here we are supposed to waste our time seeing a GP for a referral – when usually they haven’t a clue. In Europe you are assumed to have a brain; in Britain the NHS is surprised we have anything between our ears. I remember the wonderful Professor Guiloff sending me off for an MRI Scan at Charing Cross, then telling me with great satisfaction that the scan showed I definitely had a brain.

“Pressure, But She Never Knew”

She’s tiny for a two-and-a-half-year-old, and she’s in isolation, the hospital is unfamiliar and she is
cold. She is placed on her stomach and brick shaped weights are on her back in hopes that the spine won’t curve from the disease ravaging her little body. She now weighs nineteen pounds, the nurses put her back in diapers, they don’t realize her age, but she can’t move to use the bathroom anyhow. She is not allowed visitors with the exception of Sunday afternoons. What visitors? She is behind a locked door, for fear of spreading the disease, they can see her through a two way mirror, they can watch her dark curly mopped hair and see her new habit, one she never did before as she sucks violently on her little thumb, it’s company to her now. She looks back and does not see them, she sees a tiny girl with a thumb in her mouth, and she lays very still. The Mother remarks to the Father and Grandmother, “look how still she is, look how good she is being, she doesn’t cry and she doesn’t fight her circumstance.” The Grandmother says……she’s too sick to fight or cry, her body is trying to heal”…….. There is pressure in the little girl’s brain, the doctor explains to the frightened parents, there is pressure in her spine, she will not walk the rest of her life. Then suddenly the pressure shifts to the parents who wonder what will become of their child, what kind of life is in store for her and her future? They pray day after day, feeling like they are trapped in a vice of worry and fear.

On day 67, visiting day, they look through the glass and their child is sitting up, drinking a glass of
juice. Her hands and arms are so little and her body is weak, but she is sitting up, and though pale, she looks better. The doctors tell them “she is better, but we will not know for some time if she can walk, if her brain will be normal, if she will even know who you are.” He apologizes for the need to be so blunt, but they nod in understanding. The Grandmother and the Mother stifle their sobs. They can’t bear to watch this, yet they know the little girl needs them.

The pressure shifts to the child, how much can she do and when? The next step is getting the child out of isolation and reunited with the parents. Will she even know them. She sees them come
around the corner from her new room and new bed in the Children’s hospital. There is something in her eyes, but not for the Mother, it is the Father that she first notices and the eyes change from
vague to knowing. Then the Grandmother, almost an immediate response, again from the eyes. The Mother says in a quiet voice “Hi sweet girl, do you know who I am?” The child does, but now the eyes are angry. They almost say ‘you left me here, why did you do that?”

The physical therapy starts, one year after the sickness comes, the child can take little steps in her
brace, she is used to her therapy, but she wants to do it her own way, she does not want to do it
when they say, when she is ready she tries her own path.

The child is me, the little girl was me, I must now release the pressure of ignoring the inner child
within, I want to embrace the child, love the child, and then finally let the child go. To look at old
pictures is painful but a necessary resolve. This part is finally over.

Connie M Ingram