Polio Particles - Issue 1

Mary Westbrook

An Eastern Perspective on Managing Post Polio

Yes, another book on PPS! A Balanced Way of Living: Practical and Holistic Strategies for Coping with Post-Polio Syndrome by Vicki McKenna covers (and very adequately) post-polio issues included in other volumes, for example, symptoms of the condition, its causes and recommended treatments. However the author's profession as an acupuncturist and her interest in Chinese philosophy lead her to suggest strategies not discussed elsewhere. If you are interested in holistic medicine this is the book for you. A chapter on learning to relax suggests abdominal breathing exercises, healing visualisations, meditation and mindfulness. Gentle exercise programs that stimulate the flow of chi are described. A chapter on diet covers vitamin, mineral and numerous herbal supplements. Natural therapies that may relieve PPS symptoms (reflexology, acupuncture, cranio-sacral therapy, osteopathy, homoeopathy, Chinese herbal medicine and reiki) are discussed. The message of the book is that post-polio need not devastate your life: "We can learn to find new and more balanced ways of coping - trusting the river of life to take us on a journey that can be healing and creative". The book is available from V McKenna, 42 Regent Park Square, Glasgow, G41 2AG, Scotland. It costs £12 sterling (includes postage and packing). The author does not accept credit cards so purchase a bank draft to send with your order.

Mestinon Trial

Early studies of the use of this prescription drug by post-polio patients suggested that Mestinon had favourable effects on their fatigue and strength. Now the results of a double-blinded (neither the subjects nor the researcher know who received the drug or a placebo), six-month study of post-polio patients taking 60mg of pyridostigmine (Mestinon) or a placebo three times daily, has just been published. The study failed to show any differences in the outcomes of the drug and placebo groups at 6 weeks, 10 weeks or 6 months after commencement. Outcomes measured included muscle strength, fatigue and quality of life. However very weak muscles tended to be a little stronger. A physician on an Internet post-polio discussion group, to which I belong, says that some of the most debilitated members of his post-polio support group consider that they benefit from Mestinon. He speculates that more severely affected polio survivors may have been less likely to be included in the research due to difficulties in travelling to the research laboratory. Hence possible benefits for such cases were not picked up by the researchers. The study by D A Trojan, J P Collet, S Shapiro and others is titled A multicenter, randomized, double-blinded trial of pyridostigmine in postpolio syndrome and appears in the journal Neurology (Oct 1999, volume 53(6), pages 1225-33).

(Ed. The preliminary results of this study were reported in PPN Newsletter Issue 35, March 1998.)

Polio Virus Persistence

A research study has examined the cerebrospinal fluid of 20 post-polio patients and compared them with 20 patients with unrelated neurological diseases and 7 polio survivors who showed no evidence of post-polio problems. Evidence of polio virus fragments was found in 11 people with post-polio syndrome and in no one else. The authors say, "These findings suggest that PPS is related to the persistence of poliovirus in the nervous system" but it is unclear how. The study Postpolio syndrome: Poliovirus persistence is involved in the pathogenesis by J Julien, I Leparc-Goffart, B Lina and others appeared in the Journal of Neurology (June 1999, volume 246(6) pages 472-6).

Polio Vaccine and AIDS

In his book The River: A Journey Back to the Source of HIV and AIDS, Edward Hopper argued that AIDS was introduced into polio vaccine that was grown on tissue cultures from chimpanzee kidneys in the Wistar Institute, USA, in the late 1950s. The vaccine was then given to children in central Africa thereby spreading AIDS, he believes. In its review of the book, The Economist (13/11/99) said that buried in its more than 1,100 pages is an important question: "Why, in different places in Africa, and apparently within the space of a couple of decades, three separate viruses emerged which each produce the symptoms of AIDS." Hopper claimed that the Wistar Institute would not allow testing of its frozen samples of the vaccine to provide the evidence for his claim. However the Sydney Morning Herald (SMH) (10/11/99) reported that the Institute has agreed to allow testing of the vaccine in the hope of disproving Hopper. The SMH says that most scientists believe that the AIDS epidemic began when SIV (the chimpanzee form of the virus that causes AIDS) "jumped the species barrier to human beings in western central Africa. The US Center for Disease Control says it probably occurred during the slaughter of chimpanzees as early as the 1930s." The Economist points out that there is no documentary evidence that the Wistar Institute used chimpanzee kidneys. Dr Stanley Plotkin who was deputy director of the Institute at the time of the polio research is quoted by the SMH as saying Hopper's claim "is a house of cards built on circumstantial evidence and whatever doesn't fit has been ignored".

Polio Poet's Death

You may have seen the Academy award winning film Breathing Lessons that was screened on SBS last year. It told the story of Mark O'Brien, poet and writer, who contracted polio when he was 6, spent most of his time in an iron lung and wrote by using his mouth to bang his computer's keys with a stick. (Ed. One of Mark's poems "Breathing" was published in PPN Newsletter Issue 35, March 1998.) He escaped from a nursing home aged 30 to live on his own and study at university. He died from bronchitis, aged 49, in July. In Salon Magazine (12/7/99), Lorenzo Milam (another polio survivor) wrote, "Once at a press conference, someone asked Eleanor Roosevelt if polio had affected her husband's mind. There was a long pause, and she replied, yes, that it had affected his mind -- it had made him more sensitive to the pain of others…. The truth of the matter is that polio did and does affect the mind. It made Franklin D Roosevelt think he could run the United States for four presidential terms, through depression and war, without killing himself. And it made Mark O'Brien think that he -- with scarcely an intact muscle in his body -- could live independently, on his own, and at the same time be a reporter, a baseball fan, a publisher, a journalist, a social critic and a poet. He did all these things."