story by: james carmichael

Whenever I talk to Rotarians I like to begin by reminding them of a few facts that ​are sometimes overlooked – or forgotten.

Polio is a disease for which there is no cure. Polio causes permanent and ​irreversible damage to the nervous system. And there is a considerable variation ​in the effects of the disease from person to person.

That can mean that some people are virtually a-symptomatic. That is, they ​experience a mild fever and some discomfort which clears up and is forgotten. ​Only in a few cases, perhaps one in many hundreds (or thousands) of cases, does ​the disease cause paralysis. And this is the problem – polio can be circulating in a ​community, unrecognised and unknown.

For those who do suffer paralysis, this is caused by neurological damage. Nerve ​systems are permanently affected. With support and help, other undamaged ​nerves can take on the role of managing muscle systems. But this puts a ​considerable strain on the remaining nerve network.

It is estimated that polio sufferers retain only about 30% of nerve cells in areas of ​the body that have suffered paralysis, and overall retain only about 60% of the ​amount of nerve structures found in a ‘normal’ person.

Often polio sufferers are left with permanent disabilities because of the infection. ​But even if that is not the case – and they make complete recovery, often the ​stress put on the remaining nerve cells over time – leads to further problems in ​later life. .

“Sometimes called ‘late effects of polio’, sometimes referred to as ‘secondary ​polio effects’ and also known as ‘post-polio syndrome’.

Those who have this condition face a stark situation. There is no treatment for ​the failure of nerve systems that have been over-worked.

Late effects can include, loss of mobility, breathing problems, pain, muscle ​atrophy, chronic fatigue, pain sensitivity, cold sensitivity and more. The condition ​varies enormously from person to person.

The personal stories included in this issue illustrate the fact that those who have ​had polio have very different experiences, but have one thing in common, a ​determination to make the best of their situation no matter what.

But we are the lucky ones.

We might struggle to get our condition recognised by GPs, but we do have a ​functioning National Health System and we do have some measure of support.

Others who have had polio in countries where medical systems are less ​developed, where medical care is expensive, and for many - difficult to access, ​living with the effects of polio can mean a very challenging life, not to mention ​the psychological implications.

There is evidence of the prejudice some have experienced here, but many have ​had far worse, ostracised, cast out to fend for themselves, abused and neglected, ​children who have been infected with polio can struggle to survive and build a ​life.

There are many life-threatening diseases – and we should and must devote ​resources to their treatment and eradication. But the campaign to eradicate ​polio is a standard-bearer for the fight against infectious diseases.

It must not falter or fail.

Such an outcome could seriously set back the struggle for improved medical ​systems and vaccination programmes. Over 20 million children avoid the scourge ​of polio because of the End Polio Now campaign.

That is 20 million sets of parents who did not have to face the terrible ​consequences of infection, 20 million communities who did not have to live with ​the fear of polio.

The End Polio Now campaign has a huge impact on the lives of many, many ​millions of people and will stand – when it succeeds – as one of humanities ​greatest achievements.

Be part of history. Join the PolioPlus Society. What is presented over the following ​pages are extracts from personal accounts I have gathered as part of the book ​‘Polio Stories’ which I am writing. The book also includes a short history of polio ​in Britain and an account of the End Polio Now campaign.

The book will be available in the New Year, and I am grateful for the many polio ​survivors who have been willing to share their accounts, as well as to the British ​Polio Fellowship and the Scottish Post-Polio Network for their help.

For more information, contact James at: jmscarmichael3@gmail.com

JAMES CARMICHAEL

James is a retired lecturer in Economics, Politics and Philosophy, and is also ​a crime writer. He grew up in Glasgow, living in Renfrew, south of Glasgow. ​He has been a Rotarian for five years, joining because of the End Polio Now ​campaign and is currently President of Kirkintilloch Rotary Club. James is a ​member of the British Polio Fellowship and the Scottish Post-Polio ​Network. He has been appointed to the role of End Polio Now Specialist for ​Rotary in Great Britain and Ireland.

In 1955 I contracted polio. My parents recognised the symptoms, my father had ​also been infected when he was a boy.

When he had polio there were no therapeutic treatments, no callipers and no ​National Health Service. At the time, it was believed that the only treatment was ​isolation and complete immobilisation. Often children were put to bed with ​sandbags set on them to prevent any movement.

The paralysis of my father’s left leg caused a permanent disability. Just like my ​father, my left leg was paralysed.

In hospital, and it is one of my earliest memories, I recall being in a cot with lines ​of beds along the walls to the right and left. I was in a general men’s surgical ​ward. A line of cots had been placed down the middle.

I rarely saw my parents. I spent about a year in hospital and by the time I was ​allowed home, I scarcely knew who they were.

At home I spent some time in a calliper that extended over my whole leg – and ​there was some pain. But as I got older my condition improved, and I came to ​believe that I had made a complete recovery. Later I discovered that was not ​true.

In my forties, I realised that the muscles in my left leg had deteriorated. I went to ​my GP and found myself getting strength tests which reminded me of ​consultations when I was a child. I raised the point that I had polio, my GP ​dismissed that out of hand, it was too long ago for it to be relevant, apparently. ​The GP sent me to a physiotherapist, and I was given exercises.

Then other symptoms began to appear. I was told that I had a heart condition. I ​was sent to a cardiologist who put me through every test possible, all of which ​indicated that my heart was entirely normal.

My wife did some research and found information about a condition called Post-​Polio Syndrome. Suddenly a whole range of issues I had were explained. Exercise ​does not help – rather it accelerates the failure of over-worked nerves.

When my wife and I found out about the End Polio Now campaign – we decided ​we had to contribute and joined Rotary. That has given me the opportunity to get ​to know polio in more detail, to find out more about the damage it does and the ​impact it has on people’s lives.

I can’t now walk any distance, and sometimes stumble or fall. These days I walk ​with a stick, and I struggle with chronic fatigue.

The biggest challenge has been to adapt to the simple fact that there is no ​treatment for Post-Polio Syndrome and that my condition will deteriorate. All I ​can do is try to ‘pace’ myself – which is not an easy thing to accept. No-one today ​should contract polio.

We have effective vaccines. It is simple – everyone, everywhere should be ​vaccinated and protected so that they never have to live with the consequences ​of a polio infection.

elizabeth proud

Elizabeth grew up in Redcar in Cleveland and has had a long career in the ​theatre, films and radio. She remains, a bright, active person who has had a ​life-long struggle with polio, describing her situation as “deformed foot and ​short leg”. These days she has to cope with Post-Polio Syndrome. Elizabeth ​is a member of the British Polio Fellowship.

I caught polio in the summer after my fifth birthday, in 1944. This was four years ​before the existence of the NHS. My war-widowed mother and I had spent the ​war years living between the two sets of grandparents. My grandfather paid for a ​doctor – but he was unable to make a diagnosis.

The pain went down my rigid back, and I was unable to use my legs. My left foot ​became deformed, and the toes oddly scrunched up. When I did eventually try to ​walk, I had difficulty in getting my left heel to reach the floor.

My mother took me to a consultant in Leeds. “Well, it’s been infantile paralysis, ​Mrs Proud,” said the man, in a lofty tone which meant ‘you should have known ​that!’

“Is there anything that we can do, then?” asked my poor mother. “Oh, massage ​her leg with olive oil”, replied the haughty consultant, “And get her a tricycle.” ​Then, as an afterthought added: “Maybe send her to ballet classes.”

I wasn’t offered any kind of consistent ongoing care growing up. When I could ​afford it, I would buy two pairs of shoes in different sizes and throw away one ​shoe from each pair. This helped me to keep the left shoe on the foot but did ​nothing for my back.

In my twenties, I went to a chiropractor with agonising lower back pain. He ​pointed out that I had a scoliosis in my upper spine, a dehydrated disc in my ​lumbar spine and that my left leg was significantly shorter than the right – the ​first time any of these problems had been mentioned.

My acting career became more and more concentrated on radio work, both ​performing and writing for the medium.

Forty years later Post-Polio Syndrome (PPS) came along – a neurological ​condition that causes persistent fatigue, muscle weakness, shrinking muscles ​and muscle and joint pain. Pain control is impossible because most conventional ​drugs simply do not work for people with PPS. In 2003, I could hardly walk and ​was advised to contact the British Polio Fellowship (BPF), with whose help I ​managed to get a diagnosis and a disability allowance.

I have a bad knee problem because the longer leg, having been over-worked for ​nearly 80 years, has almost given up. And I have an extremely painful left ​shoulder – again due to the extra wear and tear of pushing my body up from a ​sitting position.

The GP says both these joints need total replacements. But that is something I ​can’t face, as without pain control the post-operative pain would be unendurable ​and last for months.

I get very little support from my GP and pay for osteopathic treatment, and ​Pilates instruction to try to keep the rest of my muscles working.

stella lapin

Stella, who is from Runcorn, Cheshire, faced outright discrimination and ​hostility just because she was visibly ‘different’. She has a short right leg. ​Sadly, this is far from an unusual situation, but which must have been very ​difficult to confront. Stella was an office worker and since retiring does ​voluntary support work for Cheshire Police. She is a member of the British ​Polio Fellowship.

I was born at home in Runcorn, Cheshire, in October 1957. My parents became ​concerned when I was unwell and unable to walk at 18 months in the summer of ​1959. I was admitted to Chester City Hospital. It must have been a very worrying ​time for my parents. They could only visit me every couple of weeks.

They gave me a teddy bear that was put in my cot to keep me company. It still ​keeps me company today, slightly worse for wear!

Once home, I was fitted with a calliper. This was very uncomfortable especially in ​the summer, with bulky leather straps and a boot with the leg iron which went ​through my heel. I wore a leg iron on my right leg until I was 12. I had my first ​surgery to straighten my right foot, at the age of 13.

My parents always had difficulty buying me shoes. My right foot is a size 3 my left ​foot a size 5 and my right leg is shorter than my left. Shoes have been a major ​problem all my life. No fashionable footwear for me.

Even today I refuse invitations to social events because of my footwear problems.

At secondary school, PE was hopeless for me. I really disliked it, no-one wanted ​to pick me for their netball or rounders team, I could not run, I was always left ​until last and felt humiliated.

I had surgery and when I returned to school, I had to negotiate three floors of ​stone steps on underarm wooden crutches. They would let me out of lessons 10 ​minutes before the change of lesson, but often I was left clinging to the staircase ​whilst the rush passed.

I remember on one occasion I was waiting at Lime Street railway station in ​Liverpool when a man approached and pointed at my leg, saying “that will be a ​pig’s foot in the morning”. I have never forgotten that comment to this day. ​‘Cripple’, and ‘spastic’ were shouted at me growing up.

I married Lee in 1981, Mathew was born in 1984, Sara followed in 1987. I ​returned to work when Mathew went to school.

To date I suffer lower back pain, and I have learnt to pace myself. I do get tired ​easily. However I have had a lifetime of a disability, and I’ve found my own ways ​of coping and managing day to day activities.

We are all survivors. We are still here.

john mcfarlane

John McFarlane, who was born in Oban, Scotland, but now lives in Ireland, ​is a tireless advocate for those with disabilities and, in particular, those ​who have suffered from polio. John is wheelchair-dependent with limited ​use of his right hand – all a result of damage due to polio. He specialises in ​independent living and welfare reform for people with all types of ​disability. He is currently President of the PoPSyCLE Foundation, a ​charitable organisation which concentrates on neuro-muscular ​degenerative conditions.

I contracted polio at the age of 18 months in September 1949.

I spent the next three years in hospital before heading for Hong Kong where my ​father was serving in the British army. This was just the start of a peripatetic life ​both as a child and adult.

I was fortunate that the secondary level school I attended had a Headmaster, ​himself a polio survivor. This gave me a role model and a formidable boost to the ​extent of someone saying, “You can’t” and my answer was “Watch me!”

I wanted to get a pilot’s licence, and a teacher said to me “Wait until pigs might ​fly”. When I was barred under regulations from becoming an Air Traffic ​Controller, I became a naval architect and surveyor.

That eventually led me down the road to success in commerce when I become a ​senior board executive in the steel industry. From there I moved to head the unit ​in the EU Commission which brought about laws that protected and enhanced ​the rights and entitlements of the elderly and disabled.

After that contract ended, I went onto become the founding CEO and Director of ​a charity both giving advice and helping those with disabilities use assistive ​technologies, from advanced wheelchairs to controlling not just computers, but ​other devices using voice recognition.

During my life from 18 years old onwards I have always been involved in third ​sector activities and organisations starting with Round Table in the UK and ​moving onto the Rotary Club of Kettering and then Wellingborough Hatton.

Now I live in Ireland and am the Communication’s Chair of the Rotary Club of ​World Disability Advocacy, an eClub in District 7910. Our mission to enhance and ​bring dignity and independence to peoples with all types of disabilities around ​the globe. I also help run a global Advocacy Group for polio survivors.

From a very early age I had a stubborn streak, Tell me I couldn't, and I did! Tell ​me my disability would stop me and I wouldn't let it.

About 40 years after that teacher told me I had as much chance as a pig flying, ​we met up again at a school reunion and he told me it had taught him and his ​colleagues a valuable lesson - never underestimate the human spirit and ​determination, no matter how big the obstacle. Rotary still allows me to exploit ​that attitude, hopefully to the benefit of others. As I see it my attitude meets the ​four-way test!

Now perhaps, even at my stage of life, I ought to see whether elephants can ​really fly!

mike pringle

Mike was a very active person, heavily involved in community life in ​Edinburgh. He has served on Edinburgh City Council and for two terms was ​elected to the Scottish Parliament. The later effects of polio have reduced ​his mobility. Once able to get around with a stick, he now has major ​difficulties in walking and standing. Unfortunately, there is no treatment ​for Post-Polio Syndrome. The support of his wife helps enormously they are ​very much a ‘team’ .

Well, I got polio actually in Zambia. I was four years old; it was 1949. My mother ​was a nurse and recognised the symptoms. I went through the whole experience ​of being in an iron lung.

Afterwards, I had to wear a whole leg calliper. After a while it was reduced to one ​just below the knee. That helped my balance and supported my leg. In due ​course my leg improved, and I could manage without the calliper.

I had problems with my foot, and I had to go into hospital to have an arthrodesis. ​This is an operation which, for polio patients, can help correct deformities of the ​foot. It involves removing a section of bone in the foot and fusing bone in order ​to correct ‘foot drop’.

My foot was very floppy. The procedure, the arthrodesis, fixed my foot, it wasn’t ​at all flexible afterwards, but I could manage.

But then as I grew older, my left leg grew normally but my right didn’t do much ​and there was a difference, my right leg ended up being quite a bit shorter than ​my left. When I was sixteen, I went into hospital in Edinburgh, for about 16 or 17 ​weeks and gradually had my leg lengthened.

I was very active, very busy, I met my wife, and we got married in my mid-​twenties.

Then I started to have problems walking.

I got elected to the position of local government councillor, and then stood for ​the Scottish Parliament and won twice. But my condition was getting worse. I ​needed to do something about it because I had reached a point where I really ​couldn’t walk any distance.

I thought I’d try walking with a stick, in time, I had to use two sticks. When I was in ​my early fifties, I was advised that I had Post-Polio Syndrome. And that was that.

I used to come through from the bedroom using two sticks. I began to find that ​more and more difficult and eventually had to recognise that I needed to get a ​walker to help.

It can be difficult to adapt to these things. Even my handwriting has deteriorated.

Now my right leg has no strength. I must use a walker around the house, and a ​Motability scooter to get around outside. My condition has just gradually, bit by ​bit, got worse and worse and worse.

Accepting the limitations that Post-Polio Syndrome causes can be very difficult, ​very frustrating. But you just get on.

I couldn’t manage without my wife. Life goes on and we cope with it because ​that’s what you do.

peter mcgavigan

I have been a member of Currie Balerno Rotary Club in Edinburgh since ​2012 and have been the club’s president twice in 2015-15 and 2022-23. My ​professional background is as a GP working in Currie from 1974 to 2011.

I contracted polio sometime around my seventh birthday in September 1953.

I remember feeling unwell and being unable to lift my head off the pillow. That ​must have been the meningitis which can herald the start of the infection.

I was sent to Knightswood Hospital in the west end of Glasgow. I was in a single ​room and don't remember much about my stay there apart from the fact that ​the food was terrible.

After about three weeks, I was transferred to Mearnskirk Hospital on the south ​side of Glasgow. This was quite far for my parents to travel and I seem to ​remember that they were only allowed to visit on a Sunday.

I was in a side room of a bigger ward full of children. I think I was in hospital for ​about seven weeks. Apparently, the only muscles affected were my right deltoid ​in my right upper arm and some muscle or muscles in my left leg. I made a ​complete recovery.

I realised much later how worried my parents must have been. On the day of my ​admission, after she returned home, my mother “needed” a drink and all she ​could find in the cupboard was gin. She had it neat!

From that day until her death, my mother never touched gin again. She died in ​December 2020 aged 102.

The polio vaccination programme in Scotland started in 1956 and when I was ​taken to the clinic to get it the doctors weren't sure whether I needed it as ​presumably I had natural immunity. However, I did get it and that was the correct ​decision.

A few years ago, I noticed that my right foot was more swollen than my left (the ​tendons on the upper part of my feet were more visible on the left than the right) ​and it is possible that the right foot is normal and there has been some wasting ​in the left foot.

However, it is difficult to be certain that polio was the cause of this. More recently ​a physiotherapist noticed some muscle atrophy in my right upper back. She felt ​that this was the result of polio.

I realise that there is a condition called Post-Polio Syndrome. I am unsure how ​common it is, but I have never had any symptoms suggesting that it has affected ​me.

I don't worry about Post-Polio Syndrome and consider myself to be very ​fortunate to have survived polio without any long-term problems.