Return to Main Newsletter Page 

POST-POLIO NETWORK (NSW) INC.

N E W S L E T T E R #43
Editor: Gillian Thomas        PO Box 888 Kensington
Email: secretary@post-polionetwork.org.au        NSW AUSTRALIA 1465
Website: www.post-polionetwork.org.au        Phone No: (02) 9663 2402

President's Corner Gillian Thomas

At the Network's eleventh Annual General Meeting held on 30 October 1999, the following members were elected to the Management Committee:

Gillian Thomas        President / Newsletter Editor
Merle Thompson        Vice-President
Alice Smart        Secretary
Peter Preneas        Treasurer
Anne Buchanan        Publicity Officer / Information Bulletin Co-Compiler
Elizabeth Joyner        Committee Member
Janet Malone        Membership Liaison
Anne O'Halloran        Funding Co-ordinator
Allan Quirk        Committee Member
John Ward        Committee Member
Mary Westbrook        Seminar Program Co-ordinator
Ruth Wyatt        Office Co-ordinator

Bernie O'Grady did not re-stand for the Committee and our sincere thanks go to him for the excellent work he has done as Support Group Co-ordinator over the last few years. Neil von Schill, Convener of the Albury Support Group, has now agreed to take on this demanding role. He is currently getting in touch with all Conveners and his first Support Group Report will appear in the February Newsletter.

Members at the Annual General Meeting approved new membership fees, effective immediately for new members, and from 1 July 2000 for existing members. A non-employed member will now pay an annual subscription of $10, and an employed member will pay $20. The initial joining fee for a new member remains unchanged at $5, while overseas postage has been increased to $15. Neil von Schill will be sending out revised Membership Application Forms to Support Group Conveners as soon as possible. In the meantime could Conveners please amend your existing stock of forms to reflect the new fees.

Elizabeth Dean launched our booklet Helping Polio Survivors Live Successfully with the Late Effects of Polio at the Seminar following the Annual General Meeting and it has been very well received. If you have not yet received your free copy, it is included with this Newsletter. Additional copies cost $3 (incl. postage).

The Network's new four-colour enamelled badge is also proving very popular. It is a great way to promote the Network and raise a little money to help its important work. It costs only $6 to have a badge posted out to you. Please order yours today. Copies of the new GINI Handbook reviewed in the last Newsletter are now on order from America. An Order Form will be sent out to members with the February Newsletter.

At the Committee's meeting in January we will be discussing and deciding on our goals for the upcoming year. If anyone would like to make suggestions for Network services or activities over the coming year(s) for the consideration of the Committee, please get in touch with me before 25 January.

If your address label still reads "Renewal Due on 1 July 1999" we have not yet received your membership renewal. In this case, you will find a Membership Renewal Form enclosed. Please send in your membership subscription as soon as possible. If you decide not to renew, please tell us. If we are not meeting your needs, we need to know why to ensure that the Network is as relevant to its members as possible.

Finally, I am travelling to Victoria in January to attend the Polio 2000 Conference (see page 12 for further details). I would love to catch up with any NSW Network members and friends who are also going, so please give me a ring or drop me a line so I can look out for you.

Unless otherwise stated, the articles in this Newsletter may be reprinted provided that they are reproduced in full (including any references) and the author, the source and the Post-Polio Network (NSW) Inc are acknowledged in full. Articles may not be edited or summarised without the prior written approval of the Network. The views expressed in this publication are not necessarily those of the Network, and any products, services or treatments described are not necessarily endorsed or recommended by the Network.

Thinking of going to the Paralympic Games? Day passes provide general admission to any sports session on a day of your choice for $15 or $8 concession, while reserved seating for selected finals will cost $25. To order tickets before 31 January 2000, phone 13 63 63 for a brochure and Ticket Order Form. Send your completed Order Form and payment to SPOC Ticketing, PO Box 670, Broadway, NSW, 2007. To order tickets from February 2000 phone 13 63 63. For a copy of the ticketing brochure in large print, ASCII disc, braille or on audio, phone (02) 9297 2342. If you or a member of your group has a disability and requires specialised facilities or assistance, please tick the column on the Ticket Order Form with the international symbol for disabled access. Before you purchase tickets, please be sure to read the Terms and Conditions on the brochure.
Tenth Anniversary Luncheon

Our celebratory luncheon held on 6 November was attended by almost 60 members and friends and was adjudged a resounding success. We were very pleased that Dr Pesi Katrak (Post-Polio Clinic) and his wife Shernaz, Glenn Gardner (CEO of the Northcott Society) and Wendy Potter (President of People with Disabilities (NSW)) joined us on this important occasion. Apologies were received from Network friends Dr Robert Adler, Kevin Byrne, Professor Cumming, Professor Simon Gandevia, Peter Roebuck, Jean Skuse and Jane Woodruff, and well wishes came in from local, country and interstate members who were not able to be with us.

Following a delicious lunch, retired Children's Court Magistrate Barbara Holborow enthralled us with stirring stories drawn from her time on the Bench.

Member and poet Gary Buchanan wrote a poem especially for the event, and this is reproduced below for the benefit of members who were unable to be there.

Tenth Anniversary Raffle

The Raffle realised a profit of $2,400 and the Committee would like to thank everyone for their magnificent support of our first major fund-raising effort since 1996.

• Empowering the Polio Survivor -
  A Key to the Management of the Late Effects of the Disease
  
  Professor Elizabeth Dean
  
  The following is an overview of Professor Dean's presentation to members of the Post-Polio Network (NSW) on Saturday, 30 October 1999. An audio tape recording, which complements this overview, is available from the Network for $16, including postage. Elizabeth is on faculty in the School of Rehabilitation Sciences, Faculty of Medicine, University of British Columbia, Canada. She is Head of the Post Polio Clinic at the University of British Columbia. Her research focuses on exercise, rest and sleep in survivors of poliomyelitis. We were privileged to have someone of Elizabeth's knowledge, experience and professional standing speak at our Annual General Meeting.
  
  Quality of life is not merely the absence of disease or symptoms but consists of one's ability to fulfil roles in life and perform tasks and activities of daily living, as well as psychosocial aspects of well being. The residua or late effects of poliomyelitis can vary significantly among survivors ranging from invisible signs to an individual who has been on an iron lung for the past 50 years. Similarly, the quality of life is different for everyone.
  
  The key to successful management of the late effects of poliomyelitis is empowerment. Empowerment is the capacity of individuals to help themselves attain a quality of life. Empowerment is achieved with knowledge regarding the appropriate management of the late effects of poliomyelitis and from the support of family and friends. Survivors of poliomyelitis first have a major responsibility in understanding the late effects of poliomyelitis and learning to listen to the messages from their bodies. These messages presenting in the form of fatigue, weakness and discomfort, have often been suppressed and ignored. Some individuals take years to learn to confront new symptoms as denying their presence over the years has actually enabled them to push on. Second, survivors must select health care providers who are committed to listening and working toward identifying the best approach toward management of the late effects of their disease. This partnership requires that the survivor communicates effectively with the practitioner, implements suggestions, provides feedback about the effects of the recommendations, and tries modifications. The health care provider must be guided by the survivors input as to the appropriate interventions and their priority, and to follow the survivor over time to ensure that treatment is having a maximal long-term as well as short-term effect. Third, survivors have a responsibility to inform their families and friends about what they can or can not do in an assertive manner without feeling they are letting their families or friends down, or even themselves.
  
  Living Healthy
  
  We all abuse our health to some degree through our lifestyles. Health is priceless and warrants being protected for our own benefit as well as those close to us. Even though the precise mechanism for the late effects of poliomyelitis has yet to be discovered, "living healthy" and minimizing the abuses our lifestyles inflict, can only be positive and minimize the impact of the late effects of the disease. For optimal health and reduced ravages of the late effects of poliomyelitis:
  
  
• Be positive
  

• Keep socially involved; talk to or be with a couple of people every day
• Keep involved with hobbies and recreational activities
  

• Maintain a balanced diet
• Drink lots of water

• Drink caffeine moderately if at all
  

• Drink alcohol moderately if at all
  

• Maintain an optimal body weight
  

• Don't smoke, or discuss smoking cessation programs with your doctor or physiotherapist
  

• Minimize stress
  

• Sleep well
  

• Maintain a low blood pressure
  

• Keep as physically active as you can without exacerbating fatigue, pain and further weakness; consult with your physical therapist about what is optimal for you; if recommendations and an exercise program are prescribed, make them a way of life
  

• Listen to your body's messages!
  

• First thing in the morning, what were your levels of exertion, discomfort/pain, fatigue and well being?
  

• What were your highest levels of perceived exertion, discomfort/pain, fatigue and well being?
  

• At what times did you reach these peak levels?
  

• What did you do when you reached these peak levels? Did you push on? Rest? Sleep? Something else?
  

• If you rested, slept or did something else, describe (record in journal) what did this consist of? Example: "I sat down, had a cup of tea and closed my eyes for half an hour."
  

• Afterwards, what were the level of perceived exertion, discomfort/pain, fatigue and well being? That is, was the rest, sleep or "something else" you did sufficient to relieve the symptoms?
  

• At bed-time, what were your levels of perceived exertion, discomfort/pain, fatigue and well being?
  

• How many hours were you in bed? How many hours did you sleep? How many times were you up in the night? Why did you get up in the night?
  

• How restored were you in the morning? Look at your symptom levels at bedtime. Look at these levels in the morning. In absolute terms are they high or low? Compare your morning levels with your bed-time levels. Was the night's sleep effective in reducing these to low levels? What was it is particular about a night's sleep, that made you feel particularly well rested the following day that you could replicate on other nights?
  

1. If you are able to move your ankles up and down when you are sitting, and bring your knee up toward your chest, these movements will be helpful.
   

1. If you are unable to actively move your leg, a family member or friend can passively move the leg for you so your hip and knee bends; this is best done when you are lying down so the fluid can move toward your chest cavity more easily. The leg should be moved in a rhythmic fashion.
   

1. Put your feet up whenever you are sitting down. Don't be proud - just ask for a stool or another chair. Before long, people will be anticipating your request and have one waiting for you when you sit down. When you lie down for a rest or sleep, put pillows under the leg so that it is higher than your heart.
   

1. Have a family member massage your leg so the fluid moves up toward your heart. Again, this is best done when you are in a lying position so the fluid can move toward your chest cavity more easily. This massage should not be vigorous as tight, swollen skin is more at risk of abrasion, breaking down, and inflammation and cellulitis. The leg should not be massaged if skin break down or redness of the skin is present.
   

1. Avoid restrictive clothing including corsets, tight underwear, tight socks and shoes.
   

1. Consider support stockings (for both men and women) that extend up over your knee. If you have extensive swelling, the stocking will have to go up to your groin otherwise "ballooning" of the fluid will occur where the stocking ends. These stockings must be properly fitted by a physiotherapist to ensure that they are an appropriate fit, they are not too tight or too lose, and to teach you how to apply it so it does the job properly and does not bunch when you wear it, when to wear it, how to take care of it. It is important that you wear it for a period of time, then take it off for a period of time and then reapply it.
   

1. Passive mobilisers of the legs are available as well as what's called an intermittent pneumatic stocking. These however, are not typically available to the public but may be used by a physiotherapist if your swelling is extensive or does not resolve with the suggestions above.
   

1. If you are diabetic or have glucose intolerance, your skin is even more at risk of break down and infection. Your doctor should be following you closely. Both your doctor and physiotherapist should make recommendations regarding foot care.
   

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.)

1. 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".
   

1. 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."
   

Post-Polio Post        

The Management Committee wishes you a Happy and Holy Christmas and a Healthy and Peaceful New Year