Polio Particles - Issue 5

Mary Westbrook

Polio survivor steals the show at Paralympic ceremonies

Atajan Begniyazov became the star of the athletes' parade at the opening of the Paralympic games when he threw away his crutches and walked on his hands with his feet pointing at the sky. As a result the organisers included him as a last minute addition to the closing ceremony. He walked on his hands to an armchair on centre-stage, the best seat in the house. The Sydney Morning Herald reported that Atajan does this to entertain family and friends back home in Turkmenistan, formerly part of the Soviet Union. He had not planned to do so at the Games opening until he became so excited by the enthusiastic crowd of nearly 100,000 at the Olympic stadium. Atajan, a 20-year-old medical student, contracted polio when he was one year old. His leg muscles are atrophied and one leg is shorter than the other. He is a weight lifter whose qualifying lift for the Games was 132.5 kg, nearly three times his own weight. He finished third in the last world championships for disabled lifters. Asked if he would win a medal in Sydney he replied that it depended on God's will. The Herald reporter questioned whether his legs were God's will? Atajan simply smiled.

Mia Farrow helps in polio eradication program

Mia Farrow contracted polio when she was nine years old. She spent three days in an iron lung. She was the only one of the seven children in her family to contract polio. While she was in hospital her parents drained their swimming pool, replanted the lawn, repainted the house throughout, reupholstered the furniture, had the carpets cleaned and got rid of the dog. Such was the fear of polio. Mia had a complete recovery from polio and in a recent interview in USA Today (10 June 2000) acknowledges that she may develop post-polio syndrome but as yet has experienced no symptoms. She describes contracting polio as, a lastingly traumatic episode. But it was the beginning of my awareness of other people, that there were people suffering. Her 13 children include Thaddeus, whom she adopted from India. He is a paraplegic as a result of polio. In June Mia, who is an UNICEF special representative, and Thaddeus took part in a United Nations conference on polio eradication and she hopes to visit Africa to publicise the program.

Polio is down but is it out?

The World Health Organisation (WHO) would like to stop universal polio vaccination once it has declared polio eradicated, hopefully by 2005. New Scientist's editorial (5 May 2000) talks of the possible dangers of stopping. The fact that polio is nearly extinct, it says, is a fine example of vaccines at work. But we now face a tricky endgame. Ironically the very weapon that defeated polio has a sting in its tail. The main vaccine (Sabin) is made of live virus that's been weakened. Unfortunately this virus spreads in unvaccinated populations and can revert to its original nasty form. So, in a world free from polio and polio vaccination, the weakened virus could come back to haunt us. There are vaccines made from killed virus (Salk) that don't revert but they don't work as well as live vaccines. So we need a new vaccine but the drug companies are not going to develop a vaccine that would soon be redundant. Debora MacKenzie in an article in the same issue of New Scientist gives more details. In theory polio eradication should be possible as only humans carry the virus, so if enough people are immunised, the virus will no longer be able to find new victims and will die out as smallpox did. Then we can stop immunising. However the weak form of virus in the Sabin vaccine can cause polio (in about one in a million vaccinations) and occasionally infects unimmunised people. Expert, Paul Fine, says that we don't know how long the viruses from vaccination will survive. They do not seem to survive long in the environment or in most people. But the longer the viruses persist and, and the more people they infect, the more chance they have to change (to a deadly form). It is known that the Sabin virus can persist for years in people with impaired immune systems eg people with HIV, and here they mutate, or change, faster than normal. Fine estimates that the Sabin virus might have to survive only for three to ten years before a large enough population of non-immunised people accumulated to start spreading the virus. Reverting to the Salk vaccine worldwide for the last few years of the eradication program would give the Sabin virus more time to die out but the cost would be prohibitive. Already some developing countries are objecting to paying for the eradication program. Another nagging concern is emerging that could make some afraid to stop vaccinating: bioterrorism. Laboratories all round the world have samples of polio virus. They are supposed to destroy them one year after the disease is eradicated. But prospective terrorists need only hide some now and wait for a generation of unvaccinated children to emerge before they strike. 'The horror of polio would make it a good weapon' says Roy Widdus of WHO. 'I would not want to be the one to stop vaccination, given that risk'. WHO is being criticised for an extraordinary act of ignorance, scrapping promising developments for an improved polio vaccine in the 60s. This might have eliminated the present concerns.

How did wild polio virus get into French sewers?

In May this year an outbreak of 60 cases of gastroenteritis led officials in the French city of Strasbourg to investigate water pipes which they found to be contaminated by sewage. The officials were surprised to also find polio virus there. Initially they thought it was the weak strain produced by Sabin vaccine, which is not infrequently found in sewage. However analysis at the World Health Organisation's enterovirus laboratory showed that it was a Mahoney-type strain of polio virus. This strain of wild polio virus, which once killed thousands of people every year before vaccination began in the 50s, had been thought to be extinct in France though it is used in some research laboratories. The journal, New Scientist (18 November 2000), reports that laboratories in the area are being investigated to see if they have used the strain in the last 10 years. New Scientist says that, Some of Strasbourg's citizens must have swallowed the virus. The four-month incubation period for poliomyelitis has now elapsed, and no cases of paralysis have been reported since the incident. But the incident happened during an outbreak of viral meningitis. No samples were analysed from these cases so some may have been nonparalytic polio. It is estimated that 5% of a population would need to be infected before the virus would be found in sewage. Such a large number of carriers of a lethal polio virus in Strasbourg would be unlikely without cases of paralysis. So it seems more likely that a concentrated dose escaped from a laboratory. However the head of the enterovirus laboratory is quoted as saying that, the Strasbourg incident highlights the continuing risks posed by the virus, whether or not it was an escapee (from a laboratory). … it would be stupid to stop polio vaccination any time soon.

Ed: The above two items highlight the importance of Australia's Polio Containment Project recently announced by the Commonwealth Department of Health and Aged Care - see the full story on page 14.

Itzhak Perlman on access at the Sydney Opera House

World famous violinist and polio survivor, Itzhak Perlman, gave a talk titled To Help the Handicapped, Talk to Them which was reported in Polio Deja View, the newsletter of the Central Virginia Post-Polio Support Group (June 2000). In it he says, I've been in public buildings throughout the world and it's clear that people who design them have no idea what it feels like to use crutches or use a wheel chair. One of the great architectural catastrophes of all time, from the point of view of any concertgoer, much less one who is disabled, is the Sydney Opera House. A design contest was held and the winner was an architect who had conceived a truly fantastic-looking place with about a hundred steps leading to the entrance. There is no elevator - not for the general public, not for the poor musicians who have to lug instruments up all those stairs, and certainly not for the disabled. Why couldn't the prize have been given to the best design that was also barrier free? Why, when it's possible to make EVERYONE comfortable, is so little attention paid to accessibility? It's mind-boggling.

Late effects of other disabilities

An article, Post-Everything Syndrome, appeared in the American magazine, New Mobility (September 2000). Author, Bonnie Moulton, discusses how polio survivors have raised medical and community consciousness about the late effects of all disabilities. She writes, We should give credit where credit is due. Polio survivors - inarguably the largest, most vocal and most politically active disability group in history - have fought to get health care providers, insurance companies and policy makers to recognise that for millions, the experience of polio didn't end with recovery from the initial illness. The model of self advocacy they created has extended far beyond any single disability. She goes on to describe how survivors of spinal-cord injury, cerebral palsy, spina-bifida, Guillain-Barre syndrome, long term amputation and other physical disabilities considered to be static are experiencing late effects that seem like early ageing. As you will recall from the Network's booklet Helping polio Survivors Live Successfully with the Late Effects of Polio, some polios develop post-polio syndrome which would seem to be unique to polio survivors. Most polios develop late effects due to the wear and tear of living with a compromised body. It is this that causes problems for people with other physical disabilities. Whatever the causes of their symptoms the different groups' experiences are often remarkably similar. Pain tops the list, followed by increased fatigue, decreased endurance, increased spasticity and new muscle weakness … protocols that have helped polio survivors, including a transition to a 'conserve to preserve' lifestyle may be equally valuable to someone with spinal cord injury or spina bifida. It means that people with Guillain-Barre syndrome have every reason to print out an article from a post-polio Web site and tell their family care physician, 'This sounds like me! Let's try some of these things'. The stories in the article will sound familiar to polio survivors. Ken, aged 51, with cerebral palsy, says, You slowly, or sometimes quite suddenly, realize that you can't do things you used to do easily. Then you realize that you're not really THAT old. That's the frightening part. Steve, aged 59, who has spinal injury was told by his physiotherapist 'You have two speeds now, slow and stop' … I can't do six things in one day anymore … As I've grown older I've learnt to make sure that I don't make too many demands on myself. As I get better at doing that, I've begun to be at peace. The author argues that people with long-term disabilities are more alike than different so they should be a community rather than a collection of enclaves. To have access to services and supports we'll need as we age, we need to build coalitions. Moulton has much to say about the failure of medicine in handling chronic conditions. She quotes one doctor who recommends that people with late effects of disability consult a specialist in rehabilitation medicine or in sports medicine, Why sports medicine? Once you've had a disability for 30 or 40 years, the analogy that you're doing a marathon (every day!) doesn't seem that far off. For this we pay a price. 'There is no doubt that the presence of a disability causes a person to expend more physical, emotional and mental energy every day than a person who does not have a disability', confirms Renee Kirkby, an amputee for 30 years.

Polio in novels

Lately I have been tracking down novels in which polio plays a significant role. Many such as Lightning in July by Ann McLaughlin are out of print. I bought a second-hand copy. The book, published in 1989, tells of Holly, a gifted flautist, and Dan, a history scholar at Harvard, who, to quote the cover of the book, fall in love in a hospital, having both been struck by polio on the same night…Their story explores unsentimentally the issues of disability, love and courage. The author and her husband, Charles, both contracted severe polio in 1955 from their baby son. The novel is based on the diary Ann kept while in hospital. The novel ends as the lovers are about to leave hospital. Ann has written her own story, One Couple's Journey from Paralysis to Post-Polio in the book Polio (Edited by TM Daniel and FC Robbins, 1997). After polio they went on to have successful careers and a second child. Now as a result of PPS Charles can no longer walk and Ann has a leg brace once more and swallowing problems. She says, We sometimes speculate about how much easier it would have been if only one of us had developed polio, for there have been times when our combined disabilities have limited us severely. But they have bound us together as well and increased our understanding for each other.

Crossing to Safety by Wallace Stegner, a winner of many American literary awards, was published in 1987 and is available locally (Try your library. Dymocks list it for $18.61 but all stores do not stock it). It tells of the lifelong friendship of two couples who meet in the 1930s. Shortly after their meeting Sally contracts polio and as a result needs to use calipers and crutches. Years later her health declines further. In the novel Sally's husband, Larry, says: One of the peculiarities of polio is that its victims, once they have recovered from the virus and settled down to whatever muscular control is left to them, live a sort of charmed life. Crippled as they are, they are rarely ill, they are surprisingly tough and durable, they astonish their sound companions with their capacity to endure. But that is not forever. There comes a time in the life of every such patient when the whole system-muscles, organs, bones, joints---begins to fall apart all at once, like the wonderful one hoss shay. That sounds like a description of PPS! Larry goes on to say, Every polio patient is warned to expect that time, every polio family lives with the foretold doom waiting for it at some unknown time in the future. One learns to live with it by turning away from it, by not looking. And yet on occasion one is aware of an intense, furtive watchfulness, and the victim, the doomed one, must surely have just as often the vulnerable sense of being watched. There may be some truth in this today when we wonder how much PPS will ultimately affect us but it was not the case when we contracted polio. Then neither medical textbooks nor doctors thought there were late effects. I do not know what Stegner's connection with polio was but he knows it well. In one scene Sally's voice is described as wearier than I had ever heard it. Even in her worst spells she doesn't sound like this, and she takes care that there are very few bad spells, and that when she has them they do not show. Larry vividly describes the impact of polio on their lives. You can plan all you want to. You can lie in your bed and fill whole notebooks with schemes and intentions. But within a single afternoon, within hours or minutes, everything you plan and everything you have fought to make yourself can be undone as a slug is undone when salt is poured on him. As he reflects on Sally's dependence on him he observes that contrary to what other people think, my chains are not chains ... over the years Sally's crippling has been a rueful blessing. It has made her more than she was; it has let her give me more than she ever would have been able to give me healthy: it has taught me at least the alphabet of gratitude. The book's title comes from the words of poet Robert Frost: I could give all to Time except-except/ What I myself have held. But why declare/ The things forbidden that while the Customs slept/ I have crossed to Safety with? For I am There/ And what I would not part with I have kept.