Polio Particles - Issue 7

Mary Westbrook

Type 2 poliovirus eradicated

On March 29 Associated Press reported: One of the three strains of polio has apparently been wiped out - a milestone in the global effort to eradicate the paralyzing disease. The World Health Organization said on Thursday that the global network of laboratories that tracks the disease reported no new cases of Type 2 polio in 2000. The last recorded cases were in India in 1999. There are three main types of the polio virus. Originally they were named after the patients in whom they were first isolated - Brunhilde, Lansing and Leon. Then they became known as Types 1, 2 and 3. Type 1 is the virus most frequently isolated in cases of paralytic polio and Type 2 the least commonly found in such patients. Infection from one type does not confer protection against the other two types.

Being a person with an eradicated disease

Polio survivors experience mixed emotions when they hear talk about the eradication of polio, particularly from justifiably satisfied public health officials. We have survived polio but we still have to cope with its effects on a daily basis. I recently read a book, "Sorting Things Out" (by Geoffrey Bowker and Susan Star) which discusses medical classifications of illnesses and consequences of their applications. When the authors talk about the issue of time and disease they give the example of polio. In September 1994 the World Health Organisation sent out a world-wide press release about the eradication of polio from the planet. A year earlier sociologist Fred Davis, who suffered polio in his youth, and was one of the most eloquent analysts of uncertainty in illness died of a stroke at the age of 65. Was polio eradicated for him? Was this stroke in part the legacy of his earlier illness? Many of those who had polio in the 1940s and 1950s are now beginning to lose their ability to walk as their overburdened spinal cells, designed for backup purposes, are wearing out after years of tough therapy and rehabilitation. Is the disease thus eradicated or delayed? In the lives of these patients, the answer is not so clear. I sometimes wonder if it would be more accurate to say "I have polio" rather than that "I had polio" so I was interested to read a comment by Professor Sharrad who began researching polio at the time of the epidemics. Sharrad was quoted in the February LincPin (Newsletter of the Lincolnshire Post-Polio Network) replying to a question about late effects of polio: What you are describing is polio fullstop. It does not go away, you did not HAD it. You have it. Polio has the most remarkable recovery system and that is what you have lived with and without which you would have remained at your worst. You are just describing what we knew could happen to you in your later years. It's just polio.

"Passage through Crisis" - a polio classic

Among the books written by Fred Davis, mentioned above, was "Passage through Crisis: Polio Victims and Their Families". It was published in 1963, was last reprinted in 1991 and is still around in libraries. Davis studied the impact of polio on 14 American children and their families in 1954-55, just prior to the introduction of the Salk vaccine. The families were interviewed at regular intervals beginning in the week of the child's admission to hospital and continuing until 15 months after discharge from hospital. One of Davis' most striking findings was that although obvious and abrupt changes occurred in the families over the two years of the study (eg the changes in the sick children's interactions with their siblings, the negative reactions to the children's handicaps by their peers) each time parents were asked whether anything seemed changed, whether anyone in the family felt or acted differently toward the handicapped child, whether the child acted or felt differently about himself almost invariably … the answer would come back that nothing had changed. Maintaining a sense of sameness and stability in their lives helped families survive the crisis Davis believed. He found that there were two main ways in which families did this. One strategy was denying that their child's disability had any social significance. Parents would make light of the disability, explain it away, and insist that others regard their child as normal. An example was Laura's mother. Laura had callipers, a pelvic band, and used crutches. Immediately she left hospital her mother re-enrolled her at her old school and insisted that no special arrangements be made although help was essential. The pretence of normality required enormous effort on Laura's part and resulted in upsetting experiences, as she could not manage public transport. The other less common strategy was insulating themselves from contacts and situations that would force them to admit that they themselves, and others, regarded their child as disabled. An example was Marvin's mother who discouraged him from joining groups or making friends with disabled or able-bodied children. Marvin's shame led him remove his brace with her tacit approval resulting in a fracture. Although Davis acknowledged the callous, depersonalized and deadeningly routine treatment meted out in hospital he did not believe the changes that we have seen in the care of hospitalised children over recent decades were possible.

Bradman hailed for polio cure

This headline appeared in the News section of Cricketline.com after Bradman's death. I knew that the Don walked on water but curing polio was news indeed! Chris Salter of the Lincolnshire Post-Polio Network who sent me the item commented that it was a contender for the most overstated and inappropriate headline of the year. According to the article Kim Beazley claimed Bradman helped cure him of polio by mailing Kim's father a set of exercises. Beazley said, As I used to sit down scrunching up towels between my toes Mother would say to me: "Well, Don Bradman says you have got to do this so you better do it." I can't say I liked the exercises, but they were help. The Sun-Herald reported that Bradman's son John contracted polio when he was 12 in 1951. He spent the best part of a year in a steel frame and underwent daily therapy. During this dark and worrying period for the Bradmans, John's recovery was never certain. However after a courageous fight, he overcame the illness and became a champion athlete (hurdler). But for a knee injury he could well have represented Australia in the 1956 Olympic Games. Perhaps the list of exercises that Bradman passed on were those given to John by his physiotherapist.

Wheeling tortoise

The March issue of Link, the Australian magazine that examines disability issues, reported the story of Doris a 50-year-old paraplegic tortoise. She has weak rear legs due to a degenerative disease. Her vet glued a plastic base to the underside of Doris' shell and fixed wheels to this base. The vet said this helped the tortoise achieve a better quality of life but warned that this treatment can only be carried out by specialists highly trained in tortoise diseases. I would strongly advise people not to try this at home.

Are you a sleepwheeler?

This story was recently told to me by a British GP: I received the following request for a home visit yesterday: 'Request visit. Cannot get to surgery. She is in a wheelchair. Keeps sleepwalking'. Curious, I phoned the patient who confirmed that she couldn't walk. I asked how she then managed to walk in her sleep. She replied that she 'sleepwalks' in her wheelchair. The doctor wants to know if I'd heard of any similar sleepwheeling experiences.

Changing views of Salk and his vaccine

Which one of these words best describes Jonas Salk: a) altruist, b) pure scientist, c) chump, or d) all of the above? asked Ellen Goldman in the Boston Globe (1/3/01) in an article titled "Scientists Now Go For Gold". She continued: The man who discovered the polio vaccine never made a penny from it. When asked who owned the vaccine, Salk answered, "the people" …. What would have happened if he'd begun his research today? Would the funders and the institutions have preferred that he apply his genius to a cure for baldness or impotence rather than polio? Would the scientist himself have held out for a piece of the vaccine action? In 1990 Jane Smith wrote a book on the discovery of the Salk vaccine. Its title, "Patenting the Sun", came from a comment by Salk on TV the night it was announced that his vaccine was safe. When the reporter asked who owned the patent, Salk replied, Well the people I would say. There is no patent. Could you patent the sun? In fact lawyers had advised the National Foundation for Infantile Paralysis who funded the development of the vaccine from donations, that no patent was possible since neither the processes nor the materials used in the vaccine were new. Of course they were put together in a novel way to create the vaccine. Salk never received the Nobel Prize largely because of the opposition of scientists such as Sabin who dismissed his work as unoriginal. Smith quotes Sabin as saying that there was NO evidence to say that it (polio) was conquered (by Salk vaccine), and it was NO breakthrough … There was no new science in that vaccine. There was a hell of a lot of new science in the oral (Sabin) vaccine.

In 1990 when Smith wrote her book the Sabin vaccine was considered better than the Salk vaccine which had hardly been used in the USA or most countries for 25 years. However over these years some countries such as the Netherlands continued exclusive use of Salk vaccine and began manufacturing the vaccine themselves. The Dutch improved the Salk vaccine so that it provided full protection with two doses. They combined the Salk in a vaccine with diphtheria, whooping cough and tetanus. Then the US had a turnabout when its Advisory Committee for Immunization recommended that from January 2000 US children be immunised by the Salk vaccine. The tiny risk of contracting vaccine-induced polio from the Sabin vaccine was causing more concern as global eradication approached. As mentioned in earlier Newsletters there are also worries that the live mild virus in the Sabin vaccine can mutate and spread among unvaccinated groups. (My information is from an article in Science by Blume and Geesink 2/6/00.)

On March 2001 Reuters reported that the giant drug company GlaxoSmithKline had asked the US government to approve a combined vaccine for infants that would give protection against diphtheria, tetanus, whooping cough, hepatitis B and polio. Three shots would be needed. The company currently markets a vaccine targeting the first four illnesses. However the US Food and Drug Administration voted against the vaccine (six members were against, five for and one abstained). Their biggest worry concerned the higher rate of fever reactions in babies who received the 5 compared to the 4 disease combined immunisation currently in use (which does not include polio). More discussions and clinical trials of the vaccine will take place. Public health officials believe the less complicated vaccination schedule of the 5-in-one vaccine will result in fuller immunisation in the community and it looks only a matter of time till a combination immunisation is adopted in the US, and in due course probably in Australia.

Cases of undiagnosed polio

Dr Marcia Falconer talks about undiagnosed cases of polio in her article in this Newsletter. An interesting example was Dame Ninette de Valois, ballerina, choreographer, ballet company director and teacher who died in March aged 102. The New York Times obituary caught my attention with its comment that: Later in life a medical examination revealed that she had survived childhood polio without the disease being diagnosed at the time. Searching for more information I found in the BBC obituary that de Valois was a leading dancer in London before joining Diaghilev's Ballet Russe in 1923 … She gave up dancing while still young after discovering she had been suffering for years from polio.

Marianne Weiss, a physiotherapist from Ohio, spoke at the GINI post-polio conference that I attended in St Louis in 1994. She said that she not infrequently encounters patients who do not have a history of polio but who have symptoms suggesting that in the past they had minimal cases of polio that went undetected. Examples of such symptoms included underdeveloped muscles, sometimes blatant asymmetry of muscle development, mild scoliosis, a history of being good at sport and suddenly without known reason declining in performance, and poor breathing capacity in the absence of known lung dysfunction. Weiss said that frequently these people had been given a diagnosis of fibromyalgia because of the significant tenderness of their muscles. She said, I worry that no other diagnosis fits these people, and that indeed they may be suffering the late effects of polio as surely as known polio survivors do.