By Neena Bhandari
Canberra, 15.12.2004 (IPS): As developing countries move closer to polio eradication, the developed world is battling with ageing polio survivors experiencing post polio syndrome (PPS).
Many of the 40,000 Australians, who survived the polio epidemics of the twentieth century, are facing the threat of new disabilities. While they initially recovered and made the most of life with disability, today they are battling with profound fatigue, increasing muscle weakness, joint and muscle pain, increased sensitivity to cold temperatures and sleeping, breathing or swallowing difficulties. These are all linked to the late-effects of polio or PPS.
It is still being debated whether PPS is a myth or reality. One school of thought feels it results from a degeneration of motor nerves that sprouted new connections years earlier to make up for other nerves killed by polio. As the surviving motor nerves have been supplying many more muscle fibres than nature intended, they wore out prematurely.
Some doctors say patients who have had quick recovery and led active lives have more chances of getting the PPS. The normal aging process and the overuse or disuse of muscles may also be contributing factors in development of PPS.
Societies in the west are grappling with ageing polio patients and young doctors who have not dealt with a single fresh polio case. Most doctors are not trained to recognise PPS or are reluctant to treat it as a new condition and Australia is no exception.
”No diagnostic test exists for PPS. Many physicians lack training in the diagnosis and management of a syndrome only recently acknowledged as existing,” writes Dr. Warren Anderson in a report to the medical advisory board of the Easter Seal Society’s post polio programme, based in the U.S. state of Oregon.
”Patients are often uncomfortable with physicians they feel do not understand their problems. They also fear increased disability, often at the same time they are coping with limitations of aging,” he adds.
The main advocates for increased medical and government attention to PPS have been the grassroots support groups of polio survivors.
As a polio survivor says, “The way to live life is to make changes in the lifestyle like adopting energy conservation techniques, employing household help, buying special equipment, modifying the home, cutting back on work and implementing a general conditioning exercise programme.”
There is still no cure for polio or PPS, prevention is the only remedy.
In 2004, A World Without Polio: Truly Remarkable exhibition developed by Rotary International in partnership with the National Museum of Australia in Canberra traced the role of Australians in beating this crippling and sometimes deadly disease.
Australian media tycoon Kerry Packer, talkback radio host John Laws and parliamentarian and former Australian Labor Party leader Kim Beazley have all suffered ‘infantile paralysis’ or poliomyelitis.
Polio is a highly infectious disease caused by a virus that mainly affects children under five years of age. It invades the nervous system and can lead to paralysis. The virus enters the body through the mouth and multiplies in the intestine. Initial symptoms are fever, fatigue, headache, vomiting, and stiffness in the neck and pain in the limbs.
Polio epidemics from 1930 to 1970 afflicted 40,000 Australians, gripping entire communities with fear.
As former nurse turned historian and co-curator of the exhibition, Dr. Kris Klugman explains, ”Kids in Victoria went to school with pegs on their noses. They didn’t know how it was being transmitted. They only knew people had to be isolated. Worse, polio carried a stigma and it still does. People who had polio don’t want to talk about it.”
Packer was six and at boarding school in 1945 when, as he recalls, ”one morning I got out of bed and just fell flat on my face. I had polio and rheumatic fever and was sent straight down to Sydney. They put me in hospital there for about nine months in an ‘iron lung’.”
The ‘iron lung’ saved countless lives. Only the patient’s head would be outside the contraption, which was designed to forcibly move the chest up and down, enabling the patient to breathe.
The original machine made of iron was a U.S. invention. In 1937, South Australian Ted Both developed a version made of plywood. The ‘Both Portable Respirator’ cost a fraction of the price, was light to transport and quick to make. Soon ‘plywood lungs’ were in hospitals not just throughout Australia but across the British empire.
Mr Beazley recalled waking up paralysed one morning at the age of five. ”It must have been a terribly frightening experience given that I can still remember it, but I couldn’t move. Most of all I remember the ambulance coming to our front gate and the crowds of kids around it, and I suddenly felt for the first time in my life important.”
He joined the wards full of polio sufferers in Perth’s Graylands hospital, but was one of the few fortunate ones to be able to run within a month.
”I don’t think contemporary Australians can comprehend the fear that ran through our community at the thought of polio,” he said.
Beazley poignantly remembers the time the British Queen visited Australia when he was sick.
”My mother tells me that I induced a special terror because at the time I was afflicted, the Queen was visiting Australia and my mother had met the Queen. So the royal family went into total panic because my mother may have transmitted it to her, and indeed my mother did get a mild variant of polio from me,” he said, recalling the stringent exercise regime that followed in the years to come.
The polio epidemics peaked in Australia in 1938 with 39 cases per 100,000 people. The last laboratory-confirmed case of poliomyelitis or infantile paralysis in Australia was in 1986.
It was an Australian Rotarian’s vision, the then president of Rotary International Sir Clem Renouf, which led to the global campaign for a polio free world back in 1979.
Renouf said, ”Smallpox was just being eradicated and I asked a Rotarian scientist if Rotary could get rid of a disease.”
”The scientist replied that the disease could be polio,” he added. ”This is how it started – a model of private and public sector cooperation in the pursuit of a humanitarian cause.”
In 1985, Rotary International launched its PolioPlus program with the aim to immunise all the world’s children against polio by 2005, the organisation’s centennial year.
The Global Polio Eradication Initiative is spearheaded by the World Health Organisation, Rotary International, the U.S. Centers for Disease Control and Prevention (CDC) and the United Nations Children’s Fund (UNICEF).
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