WHAT IS POST POLIO SYNDROME
Post Polio Syndrome is a poorly understood condition that can affect people who have had polio in the past.
Polio is a viral infection that used to be common in the UK, but is now rare.
Most people who had Polio would have fought off the infection without even realising they were infected.
Some people with Polio would have had paralysis, muscle weakness and shrinking of the muscles. But usually, these problems would have either gone away over the following weeks or months, or remained the same for years afterwards.
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Post Polio Syndrome is where some of these symptoms return or get worse many years or decades after the original polio infection.
SYMPTOMS OF POST POLIO SYNDROME
Post Polio Syndrome can include a wide range of symptoms that develop gradually over time, including:
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persistent fatigue (extreme tiredness)
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muscle weakness
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shrinking muscles
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muscle and joint pain
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The condition can have a significant impact on everyday life, making it very difficult to get around and carry out certain tasks and activities. The symptoms tend to get gradually worse over many years, but this happens very slowly and treatment may help slow it down further.
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Post Polio Syndrome is rarely life-threatening, although some people develop breathing and swallowing difficulties that can lead to serious problems, such as chest infections.
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WHO'S AFFECTED
Post Polio Syndrome only affects people who've had polio. It usually develops 15 to 40 years after the infection.
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The condition has become more common in the UK in recent years, because of the high number of Polio cases that occurred during the 1940s and 1950s, before routine vaccination was introduced. It's estimated that there are around 120,000 people living in the UK who survived Polio when they were younger. Some of these have, or will develop, Post Polio Syndrome.
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It's not known exactly how many Polio survivors are or will be affected by Post Polio Syndrome. Estimates vary from as low as 15% to as high as 80%.
WHAT CAUSES POST-POLIO SYNDROME?
The exact cause of post Polio Syndrome is unclear. It's not known whether anything can be done to prevent it.
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The leading theory is that it's the result of the gradual deterioration of nerve cells in the spinal cord (motor neurones) that were damaged by the Polio virus. This would explain why the condition can take years to appear.
Post Polio Syndrome isn't contagious. The theory that the Polio virus may lie dormant in your body, causing Post Polio Syndrome when it becomes reactivated at a later stage, has been disproven.
It's not clear why only some people who've had polio develop Post Polio Syndrome. Those who had severe Polio when they were younger may be more likely to develop the condition.
Contacts us: 0800 043 1935
Email us: info@britishpolio.org.uk
Paul Hovell
When I was about eight years old, I went to a birthday party where the boy’s father refused to let me in because he “didn’t want people catching that.” At the time, very little was known about polio.
I was born in December 1954 at Victoria Hospital in Mansfield. When I was eight months old, I contracted polio and was admitted to Heathfield Isolation Hospital in Nottingham in August 1955. I was later transferred to the City Hospital. My parents were not allowed to stay with me.
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I was discharged at 15 months old. Although I was meant to return regularly for physiotherapy, this didn’t happen because my mother was pregnant again. I was transferred to the outpatient’s department at Mansfield General Hospital, but I still wasn’t taken for treatment.
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Around 1959, I was sent to the Royal Infirmary in Sheffield. After examination, the orthopaedic surgeon decided to leave things as they were at the time. My right arm, right shoulder, and possibly my right lung were affected. My GP, Dr Williams, agreed that my lung had been slightly damaged, but this was never followed up.
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When I was about eight years old, I went to a birthday party where the boy’s father refused to let me in because he “didn’t want people catching that.” At the time, very little was known about polio. I didn’t learn until much later that it was airborne.
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In 1966, an orthopaedic surgeon in Sheffield told my father that my condition would not improve and suggested that my right arm might need to be removed. My father replied, “He hates us now. I can’t make that decision for him. He’ll have to decide for himself when he’s older.” I ran off and hid in the car park, terrified that they were going to do it immediately.
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When I was about twelve, a man named Mr Hallam—who had taught my father to drive and had sustained war injuries—offered to help me use my right arm more. He introduced me to isometric exercises. I started by pulling on an old car fan belt tied to a stair door handle, then progressed to a Charles Atlas exerciser with two strings removed. Gradually I worked back up to three springs and later moved on to a bullworker. These exercises eventually enabled me to hold spanners and other tools.
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I continued attending annual check-ups at Sheffield Children’s Hospital until 1969, after which the visits stopped.
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School
My infant school years were fairly normal, but problems began when I moved to junior school. I was bullied not only by older pupils but also by the headmaster. The boys would spin my arm around like an aeroplane propeller and shout, “He’s looking for you,” followed by, “Richard Kimble, the fugitive — he’s looking for the one-armed man.”
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The headmaster used to make me sit in his office and try to write with my right hand. He would say, “You’ve got enough stigma having polio without being left-handed as well.” As I was naturally right-handed, when I wrote with my left hand I started in the middle of the book and wrote outwards to the edge of the page. I spent very little time in school after this, often running away and hiding.
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The only teacher who showed me any kindness at junior school was Mr Bundy, who allowed me to sit in his classroom during breaks, away from others. I also wore thick cardigans throughout the summer so people wouldn’t see my arm.
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Things became even worse at comprehensive school. Because I had missed so much education, I couldn’t read or write when I started. I hid whenever I could. My English teacher told me I was wasting both his time and my own and said I was the kind of person who would end up in a dead-end job.
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By then, my left arm had become very strong, and I began fighting anyone who would fight me. I was caned on stage for being a bully. I left school at fifteen with no qualifications. Despite this, I was still offered three jobs.
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I chose to work at a local sock factory, where I stayed for thirty years. I began as a trainee mechanic, worked my way up to supervisor, and for the final five years was head mechanic.
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After being promoted, I decided to learn to read and write properly and was accepted by the Mansfield Dyslexic Association. While I was learning, my wife helped by writing my reports, and a woman in the office wrote out any orders I needed until I was able to do them myself.
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When my mother was giving birth to my younger brother, a midwife told her that if she had breastfed me, I wouldn’t have caught polio. I hated my mother for many years after hearing this. When we argued about it years later, she explained that she had mastitis and couldn’t continue breastfeeding. After that conversation, our relationship improved.
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I am now 70 years old, and I felt it was time to tell my story.