Polio comes back to haunt childhood victim more than 60 years after original diagnosis

Robbie Johns, who had polio when he was two and thought it had stablised, has now developed Post-Polio Syndrome, a range of symptoms that come on years after people have had polio.

Polio is returning to haunt survivors as they age, as Sheena Grant reports.

Every child loves a day at the seaside. But for Robbie Johns, who visited the beach as a two-year-old on a trip to meet his grandparents in Newcastle for the first time, it was to prove a journey that would change his life forever.

Robbie was a lively, healthy two-year-old when he took the train from Suffolk with his mother in 1950. Once back home, he started to feel unwell with flu-like symptoms. His mother, a Geordie who moved to Ipswich after meeting Robbie’s dad, who was in the Royal Navy, asked the health visitor to call, only to be told he was behaving like a “spoilt child” for not standing up when asked.

But Robbie was unfairly maligned. He was, in fact, suffering from the first signs of polio, a devastating viral disease that mainly affects young children and attacks the nervous system, leading to paralysis and sometimes death. The UK was badly hit by polio in the 1940s and early 1950s before a vaccine was declared safe for use in 1955. In 1950 alone, the year Robbie contracted the illness, there were 8,000 reported cases and nearly 800 deaths.

Robbie Johns avoided having his brace in photos growing up.

The following day, Robbie’s legs gave way and he fell, hitting his head on the family’s quarry-tiled kitchen floor, causing a head injury that needed surgery at Ipswich Hospital. It was there that Robbie’s mother was given the terrible news that her son was paralysed with polio and unlikely to walk again. The little boy was confined to an isolation unit for six months. Being so young he has little memory of what must have been a confusing and frightening experience but deep in the recesses of his mind is the recollection of the mechanical ‘breathing’ sound of an iron lung, used to treat other polio victims, whose ability to breathe unaided was affected by the disease.

“My mother said I was like a little rag doll,” he says.

But Robbie confounded the doctors and gradually learned to walk again by wearing a calliper on his right leg. Five years later he was able to cast off his heavy boot and leg irons. He had a place at the same primary school his siblings attended and, to all intents and purposes, Robbie was no different from anyone else.

“There was a stigma about polio and I didn’t want to talk about it or tell people I’d had it,” says Robbie, now 67.

Robbie Johns (bottom left) avoided having his brace in photos growing up.

“I was left with a thin right leg and funny shaped feet but thought, well, that’s polio sorted. It was a case of let’s get on with the rest of my life. ”

But it wasn’t to be that simple.

Forty years after getting back onto his feet and walking unaided Robbie began to suffer inexplicable new pain, muscle weakness and fatigue. His left leg - the one apparently spared by polio - started to give way at the knee and he frequently fell.

His GP recommended leg exercises to build up muscle strength but despite going to the gym three days a week his mobility continued to worsen. Unbeknown to him, Robbie was exhibiting the signs of Post-Polio Syndrome, or PPS. Polio’s sting in the tail.

PPS is a neurological condition that can affect up to 80% of those who have had polio. It is estimated that around 120,000 people in the UK are living with PPS, which strikes years later, when victims think polio is part of their past. Those affected develop increasing weakness, fatigue and pain, a general reduction in stamina, breathing, sleeping, swallowing problems and cold intolerance. PPS usually begins slowly, but can appear suddenly and often following triggers such as falls, surgery or immobility.

Robbie first noticed his symptoms in 1990, although he had never heard of PPS at that point. By then he was married, with three children and a successful career, first as the general manager of a national company supplying the motor industry and then running his own business. Despite a further five years of treatment from physiotherapists and a multi-tendon transfer operation on his left foot, the loss of leg function continued and Robbie had to use a walking stick to help him get around.

“I needed answers,” he says, “and no-one could give me any. It was at this point that I joined the British Polio Fellowship to see if they could shed any light on what was happening to me and the loss of function in my legs - it couldn’t be anything to do with polio after all this time, could it?”

Robbie was advised to ask his GP for a referral to a specialist unit at St Thomas’ Hospital, London, where he was diagnosed with PPS.

“The body’s fusion of nerves after polio were not strong enough to last a lifetime,” says Robbie. “They get exhausted and start to break down. All that exercise the GP told me to do to build up my muscle strength when I first started to have problems was the worst thing I could have done. It may seem a strange thing to say but after the diagnosis I felt relieved to know what was causing the loss of function in my legs and that rather than helping, over-exercising my weak leg muscles would cause further deterioration. You’ve got to pace yourself and preserve what you’ve got. There is no cure. We thought we’d had polio and it had stabilised. We didn’t know there was a sequel. Physically it can be difficult to deal with but emotionally I try to think about what I can do, not what I can’t.”

Among the things he can do is sailing. In fact, Robbie’s discovered he’s rather good at it and goes each week at Alton Water, just outside Ipswich. Sailing allows him a freedom increas-ingly denied him.

After his diagnosis Robbie, who lives in Capel St Mary and is now a grandfather of six, was advised to use a full leg brace to support his unstable left knee. He was also asked to attend a sleep study unit as another symptom of PPS can be breathing difficulties. Sure enough, Robbie was affected and needs to use a ventilation aid each night to help with his breathing whilst sleeping.

By 1998 Robbie’s lifestyle was being severely curtailed by decreasing mobility and in June that year he fell in the garden, fracturing his right arm in two places. His diary of the time records his frustration. “I’m unable to hold my walking stick, becoming dependent more than ever on my wife for help in order to get up and go out,” he wrote. “I’m advised to plan for the future and retire early after working full time for the last 35 years. I need to pace myself and consider using a wheelchair as this will prevent the continued over-use of my weak legs.” In capital letters afterwards he writes: “I do not want to go around using a wheelchair.”

Later that year Robbie took early retirement at the age of 50. Soon afterwards he was invited to join a group to establish a post-polio rehabilitation programme at St Thomas’ Hospital. “The results showed how challenging PPS was for many survivors of polio,” he says. “Managing further disa-bility was devastating news and difficult for some of the group to accept. I knew how they felt.”

Even now, he says, few health professionals have knowledge of polio’s sting in the tail. The current generation of doctors and nurses have grown up in a country that thought it had consigned polio to history. Most of those who understood the disease have died or retired.

He remains grateful to the British Polio Fellowship for pointing him towards specialists at St Thomas’ and believes more needs to be done to raise awareness of the hurdles polio survivors face as they age - especially as research suggests 69% of GPs would not feel confident about diagnosing PPS.

“PPS has to be carefully managed and I remain positive now that I have adapted my lifestyle and learnt to accept help from others,” says Robbie. “Using a wheelchair was a big step, but it prevents the overuse of my weakening leg muscles.”

But the psychological effects of PPS can be difficult to deal with.

“When you got to the point where you thought you’d made a recovery from polio you thought, thank goodness,” says Robbie. “Sometimes it’s hard not to give into the thought that you’re losing your independence. It feels like things have come full circle.”

To find out more visit www.BritishPolio.org.uk