POST - POLIO NETWORK (NSW) INC.

NE W S L E T T E R #36
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

Greetings to regular readers and new members alike. There is much to interest you in this issue. Details for the Seminar to be held on 20 June can be found on page 2, while further information on the Conference scheduled for 29-30 August is on page 3. Feature articles start on page 4.

It is membership renewal time. With this Newsletter you will find one of two forms, depending on your financial status. If you are currently paid up to 30 June 1998 (as indicated on your address label) you will find a Membership Renewal Form enclosed, for the period 1 July 1998 to 30 June 1999. Could you please tick or amend your details as given on the form, and return it with your subscription to the Treasurer at the above address (please note that the Post Code for the Network is now "1465"). If you are already financial beyond 30 June 1998, you will instead receive a Membership Update Form which gives your current details but does not request payment of a membership subscription. Again, please check your details, tick or amend them as required, and then return the form to the above address as soon as possible. Whichever form you receive, you will note that at the bottom it requests you to advise whether you are willing to sell a few raffle tickets to assist in the Network's fundraising. It is very important that you complete this section of the form so that we can update our records. The proceeds of the raffle planned for this year will go towards holding Seminars in country areas, with the first being held in Canberra in August. Gordon Munday, the Network's Publicity Officer, is assembling an interesting range of prizes, with the raffle books due to be sent out with the August Newsletter. The raffle will be drawn during Post-Polio Awareness Week (1-7 November). Please help if you can to make this raffle a success.

On 25 March 1998 I represented the Network at the launch of the Australian Childhood Immunisation Charter. The Network was one of twenty-three signatories to the Charter from community and health organisations. The photo shows Dr Michael Wooldridge, Federal Health and Family Services Minister, Gillian Thomas and Peter Garde, following the signing of the Charter. Dr Wooldridge stated that "the initial 23 Charter participants were chosen due to their access, ability and commitment to play a significant role in the health of Australian children."

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 and services described are not necessarily endorsed or recommended by the Network.

1. Bring a packed lunch to eat from 12:00 noon and catch up with friends before the Seminar, and afterwards at afternoon tea. As usual, fruit juice, tea and coffee will be provided.
   

1. Please note that the Hall is on the left-hand side of the Princes Highway as you drive towards Sydney, between Gladstone and Regent Streets. If you are driving from Sydney down the Highway, you need to turn right into Regent Street, left into Gladstone Street, and then left back onto the Princes Highway. St Paul's is then a short distance along the Highway, on your left. Parking is available on the premises. It would be appreciated if those who are more mobile would leave the closer parking for members who are only able to walk or wheel short distances.
   

Our guest speaker will be Dr Paul Lam M.B.B.S. (Univ. NSW) F.A.M.A. Dr Lam, a family physician, is an internationally renowned Tai Chi and Qigong teacher with more than twenty years experience. We are very pleased that he is giving up some of his precious weekend to present what promises to be a very informative talk.

Tai Chi is a gentle and relaxing exercise suitable for people of all ages. It is a system of meditation and physical exercise consisting of carefully coordinated natural movements and gradual body rotation. Regular practice of Tai Chi improves body awareness, coordination, mental relaxation and the ability to concentrate. Physical health is also improved through strengthening all of the body systems, particularly the cardio-vascular, respiratory, digestive, and skeleto-muscular systems, and the joints.

Qigong is an ancient Chinese art which includes breathing and meditative exercises. Qigong requires regular practice and is especially beneficial for relaxation, mental concentration, and for increasing heart and lung capacity. It is considered suitable for almost anyone of any age or physical capability to learn.

Dr Lam will demonstrate both Tai Chi and Qigong exercises, with particular emphasis on exercises that can be done sitting down. This will be a "hands on" Seminar and members are asked to wear comfortable clothes and footwear. As usual, there will be plenty of time for questions and answers.

After the Seminar, we hope you will stay and have afternoon tea with fellow members. This is always a good opportunity to catch up with old friends and make new ones. If this will be the first Seminar you have attended, please introduce yourself to a Committee Member. We hope to see you there!
Canberra Mini-Conference & Conveners' Workshop
29 - 30 August 1998 : Managing The Late Effects of Polio

The last weekend in August will see the Network hold a Mini-Conference and a Support Group Conveners' Workshop in Canberra. The venue is ACROD House, 33 Thesiger Court, Deakin ACT 2600. This is a large, light and airy venue with accessible facilities on site and ample parking a short level walk away. ACROD House is heated to keep the winter chills at bay. It is an ideal venue and the Network is grateful to ACROD for making it available at reasonable cost to groups such as ours. The Network is not making accommodation arrangements for participants, but will provide details of suitable motels. You should expect to pay around $85 for a motel room close to the venue.

Saturday 29 August : Mini-Conference

Attendance at the Mini-Conference is open to all members and friends of the Network. For planning and catering reasons we need to know the number of people who will be coming to the Conference. You will greatly assist the Committee if you can complete the enclosed Registration Form as soon as possible.

The Conference program focuses on the practical aspects of managing the late effects of polio, and has been developed in conjunction with the ACT Support Group. The registration cost is $20, which includes morning and afternoon tea and a hot lunch. If you are accompanied by someone to assist you, that person may attend at no charge. The day's proceedings will be tape-recorded and tapes will be later available for sale.

The draft program is given below. We are pleased to announce that Dr Pesi Katrak, Rehabilitation Specialist, Prince Henry Hospital, has accepted our invitation to give the keynote address, and to participate in the afternoon panel. Christopher Sparks, Dynamic Living Designs Pty Ltd, has also accepted our invitation to speak and will present a lively session on mobility equipment. Once all speakers are confirmed, the final program will be sent to registrants and also published in the August Newsletter.

Sunday 30 August : Support Group Conveners' Workshop

Sunday's Workshop is designed for current Network Support Group Conveners, and for those who are interested in becoming a Convener. There will no charge for attendance on this day, but pre-registration is essential, again on the enclosed form. Tea/coffee and a light lunch will be provided.

The program for this day will be more fluid than that for Saturday. The day will commence at 10:00 am and conclude by 3:00 pm. The day's activities will be facilitated by someone outside the Network to ensure that everyone gets a go, and that participants don't get bogged down or digress unduly from the matters at hand. The Network's President will introduce the proceedings and, together with the Support Group Co-ordinator, will explain the Network's philosophy on Support Groups, how Groups fit into the Network structure, and the roles of the Support Group Co-ordinator and individual Conveners. This will be followed by an introduction and feedback session from those present. Participants will learn what Groups are doing around the state. It is expected that issues for further discussion will be identified during this session; for example, the mechanics of getting a Group up and running, how to find out information on local area services, networking, group dynamics, how to address the perception of the role of convener as counsellor, how Groups might develop in the future, and rural issues that the Network should be addressing. After lunch, the participants will break up into smaller groups (as numbers dictate) and explore in detail the issues raised and endeavour to determine strategies to resolve them, or make recommendations to the Management Committee for further action, as appropriate. The proceedings will be taped and a copy provided to all participants and also to Network Support Group Conveners who are unable to attend. This promises to be a dynamic and fruitful day. If you already convene a Group or are considering doing so, you are urged to attend if at all possible.
Post-Polio Research: The State of the Art, 1998

Dr Richard Louis Bruno

Dr Richard Louis Bruno is director of the Post-Polio Institute at Englewood (New Jersey) Hospital and Medical Center and is chairperson of the International Post-Polio Task Force. This paper is reproduced with his permission. For members who have access to the Internet, papers describing the research performed at the Post-Polio Institute can be found in the online PPS Library at http://members.aol.com/harvestctr/pps/polio.html.


For researchers studying post-polio sequelae (PPS) -- the disabling fatigue, muscle weakness and pain experienced by 76 percent of polio survivors decades after the poliovirus has come and gone -- 1997 was a year of discovery. Some of the new findings are disappointing, and others are even disturbing. But new understanding from this research will become the platform for future treatments, so there's every reason for survivors to keep themselves well-informed.

Brain Waves and Fatigue

During the past eight years, my team at the Post-Polio Institute at New Jersey's Englewood Hospital and Medical Center has been studying the cause of post-polio fatigue, the most common and disabling PPS. Fatigue in polio survivors has been found to be associated with a severe inability to focus attention and a marked reduction in the brain-activating hormone ACTH. Magnetic resonance imaging reveals damage to the brain-stem neurons responsible for activating the brain, damage also found during autopsies of polio survivors done 50 years ago.

A study to be published this spring in the Journal of Chronic Fatigue Syndrome describes our measurement of polio survivors' attention, brain waves and the hormone prolactin. Prolactin increases in the blood when there is too little of the most important brain-activating neurochemical dopamine.

Our finding that polio survivors with the worst fatigue had the highest prolactin levels and the slowest brain waves suggests that survivors do not have enough dopamine to fully activate their brains. A dopamine shortage may explain their difficulty in focusing attention and the other symptoms of post-polio "brain fatigue". This conclusion is supported by our 1996 finding that bromocriptine -- a drug that substitutes for dopamine in the brain -- reduces the symptoms of post-polio brain fatigue in survivors who do not respond to the treatments of choice for fatigue: reducing physical and emotional stress, using assistive devices, conserving energy, resting, and pacing activities.

IGF-1 and Pyridostigmine

Last fall, the results of two multi-center drug studies were announced. Robert Miller, of San Francisco's Columbia Pacific Medical Center, led a study of recombinant insulin-like growth factor-1 (IGF-1) in polio survivors. Why study IGF-1? Because a 1995 study at the Milwaukee VA Medical Center had found that male polio survivors with "difficulties in the activities of daily living" had abnormally low blood levels of IGF-1. IGF-1 normally increases muscle size, stimulates extra neuronal growth (a process called sprouting) and slows the progression of amyotrophic lateral sclerosis. So an IGF-1 "menopause" in polio survivors was considered a possible cause of post-polio muscle weakness, and the replacement of IGF-1 a potential treatment.

Miller and his colleagues measured several variables before and after three months of twice-daily under-the-skin injections of either IGF-1 or a placebo: subjective fatigue, ability to function, the force of a maximal muscle contraction after a fatiguing exercise, and the amount of muscle strength recovered 15 minutes after the exercise. Unfortunately, the study found that IGF-1 had no effect on subjective fatigue, functional ability or muscle strength, although muscle force after the 15-minute rest was 13 percent higher. The improved muscle force "was statistically significant for those who received IGF-1", says Miller. But, he adds, "we are not sure how clinically meaningful this would be nor do we understand the mechanism of this finding."

Another multi-center, placebo-controlled study was headed by Neil Cashman, now at the University of Toronto. Cashman and his colleagues gave polio survivors a placebo or pyridostigmine (Mestinon c), a drug that prolongs the action of acetylcholine, the chemical released by motor nerves to make muscles contract. In an earlier study in which subjects knew they were taking the drug, pyridostigmine was found to decrease survivors' "general fatigue" by 56 percent. But the controlled study of pyridostigmine was disappointing. After six months, says researcher Daria Trojan, there was "no significant impact on quality of life, fatigue or muscle strength."

Thus IGF-1 and pyridostigmine join amantadine, an anti-viral drug, and prednisone, a powerful steroid, as once-promising drugs that have not been found to reduce post-polio muscle weakness or fatigue in placebo-controlled studies.

Magnets for Pain?

If current drugs are not effective treatments for PPS, might less conventional approaches be helpful? Carlos Vallbona, of the Baylor College of Medicine, thought so. He and his colleagues tested the effects of magnets on pain in polio survivors.

Vallbona identified subjects' "trigger" points, places on the body that hurt when pressed. He then caused pain "by firm application of a blunt object approximately one centimeter in diameter", asking subjects to rate the pain on a scale from zero to 10. On average, the pain was rated about a 9.

Researchers then placed either a magnet or a non-magnetic pad, indistinguishable from the magnets, over the painful trigger point and waited. After 45 minutes, the blunt object was again pressed into the trigger point. Subjects treated with a magnet rated their pain a 4 on average after the second push. Those treated with the non-magnetic pads rated their pain an 8.

Vallbona's methods cannot be faulted. Double-blind, placebo-controlled studies like this one are the gold standard of research. Sadly, the media quickly reported that magnets are a "cure for post-polio pain". Pushing a blunt object into a trigger point does not produce post-polio pain, but rather an experimentally induced pain that is not at all typical of the chronic muscle and joint pain reported by about 75 percent of polio survivors. Without another study, it is not clear that magnets will decrease chronic pain in polio survivors.

It is also unclear why magnets would have any effect on even experimentally induced pain in polio survivors. Vallbona implies that the pain-reducing effect of magnets in his study may be related to the Post-Polio Institute's 1985 finding that polio survivors have double the pain sensitivity of those who have not had polio. This heightened pain sensitivity may be related to a 50-year-old finding that the poliovirus kills brain neurons that produce endorphins, the body's own morphine.

But regardless of how magnets might have decreased pain in this study, polio survivors shouldn't think they can run themselves ragged, apply magnets to treat pain, and be just fine. Future studies may indeed show that magnets are helpful for pain. But pain in polio survivors means damage is being done to the body. Masking discomfort -- with magnets or morphine -- is not a cure for polio survivors' pain.

The Damage Done

The most important and sobering finding of 1997 was a study by AJ McComas of Canada's McMaster University. McComas and his group tested the most widely accepted hypothesis for late-onset muscle weakness in polio survivors: that motor neurons are breaking down and sometimes dying as a result of the initial poliovirus damage and decades of overuse abuse.

McComas actually performed two studies. First, using a technique he developed and has used for 25 years, he counted the number of motor neurons in polio survivors. Muscles known to have been affected by the original polio were found to have lost 59 percent of their motor neurons.

Sixty-five percent of muscles thought not to have been affected had lost 40 percent of their motor neurons. These percentages mirror precisely the findings of pathologist David Bodian, who 50 years ago showed that at least 60 percent of motor neurons had to be killed by the poliovirus for a muscle to show any weakness, and argued that there was no such thing as an "unaffected muscle" in someone who had had paralytic polio.

McComas' second study was equally revealing, but more disturbing. He counted motor neurons in 18 subjects, then followed them for two years. At follow-up, 78 percent of the subjects reported a decrease in muscle strength and had lost an average of 13.5 percent of their motor neurons, approximately twice the rate of loss expected in healthy subjects. Most alarming was the finding that the two survivors who reported the greatest decrease in strength had each lost 50 percent of their motor neurons during the two years.

While these findings are frightening, they are also a guide to a rational treatment for PPS. "Our findings make clear that polio survivors should not be treated using electrical stimulation that causes muscle contraction", warns McComas, "nor should they engage in fatiguing exercise or activities that further stress metabolically damaged neurons that are already overworking."

Typically Type A

In a study presented last October, Susan Creange, a research fellow at the Post-Polio Institute, reported that polio survivors with blood sugar levels in the low normal range have as much difficulty focusing attention as do diabetics who have extremely low blood sugars from taking too much insulin. "Polio survivors", Creange says, "often have a 'Type A diet': drinking three cups of coffee for breakfast, not having lunch and eating cold pizza for dinner. When we put polio survivors on a hypoglycemia diet, that requires eating protein at breakfast and small, non-carbohydrate snacks throughout the day, they had a remarkable reduction in nearly all the symptoms of post-polio fatigue."

The question for Creange was not only why polio survivors appear to be hypoglycemic -- which she thinks is related to their brain-activating neurons being metabolically damaged -- but also why they often eat a "Type A diet" and have such difficulty taking care of themselves.

For a study published in 1997, Creange mailed anonymous surveys to all patients who had been evaluated by the Post-Polio Institute team. Patients were asked about their PPS symptoms and completed surveys that measured loneliness, self-concept and how Type A -- hard-driving, pressured, time-conscious, perfectionistic and over-achieving -- they were. Patients were also asked how often they rested during the day, asked for help from others, and used braces, canes, crutches, wheelchairs or scooters.

"Patients with a high Type A score were less likely to take rest breaks, a cornerstone of the treatment of PPS", says Creange. "Patients who used wheelchairs were more lonely and had a poorer self-concept, crutch users also had poorer self-concept, while those who asked co-workers for help had a more positive self-concept." Further, the most Type A patients were the loneliest; the lonelier they were, the poorer their self-concept.

"Polio survivors will not rest, use assistive devices or ask for help if they feel badly about themselves", says Creange. "Friends and family members must help polio survivors feel better about themselves if they are to slow down, accept lifestyle changes and use the new assistive devices needed to treat their PPS."

Abuse, Then and Now

Another study presented last year also asked why polio survivors are so Type A and take such poor care of themselves. The 1995 International Survey, performed by Nancy Frick of Harvest Center in Hackensack, NJ, surveyed more than 1,700 polio survivors and non-disabled controls. Frick, a polio survivor herself, measured Type A behavior and sensitivity to criticism and failure, and asked whether polio survivors had been evaluated or treated for their PPS. The survey also asked about experiences surrounding the original polio, including hospitalization, surgeries, and emotional and physical abuse by family members, peers and medical professionals.

"As in our two previous post-polio surveys", says Frick, "polio survivors were 21 percent more Type A and 15 percent more sensitive to criticism and failure as compared to non-disabled controls." A more upsetting finding was that polio survivors reported 34 percent more emotional abuse and 94 percent more physical abuse than did controls.

"All of the 'extra' abuse was related to polio survivors appearing obviously disabled", says Frick. Polio survivors who were abused were at least 15 percent more Type A and sensitive to criticism than those who were not abused. "It is no mystery why polio survivors today refuse assistive devices that make them look more disabled", says Frick. "Using crutches or a wheelchair feels like painting a bulls-eye on your chest above the words, 'Abuse me, I'm disabled!'"

Frick's findings may also explain why polio survivors are so reticent about even being evaluated for PPS. "About 78 percent of polio survivors said they were not treated with concern by the medical staff when they had polio", she says. Polio survivors who were treated well by medical personnel are significantly less Type A and less sensitive to criticism than those who were treated poorly. Those who were not treated well became more Type A and more sensitive to criticism and failure as adults.

Frick's research suggests that Type A behavior developed as a protection against criticism and failure, and that polio survivors who are most Type A today are most likely to refuse evaluation or treatment for their PPS. Frick concludes, "Type A polio survivors refuse to treat their PPS and use assistive devices as a protection from the kind of abuse they experienced as children."


Treatment of Choice

Research during the past decade has shown that conservative treatments for PPS -- reducing physical and emotional stress, using assistive devices, conserving energy, resting, and pacing activities -- are very effective. The problem is that polio survivors have such difficulty applying these simple measures.

"The treatments for PPS may sound simple, but they are not", says Frick.

"Polio survivors have to deal not only with their bodies giving out on them again, but also with their long-buried emotional pain." And it is those painful experiences of the past, the fear of giving up "protective" Type A behavior, and a terror of looking disabled that stop polio survivors from treating their PPS.

The most difficult aspect of treating PPS is not deciding whether a short- or long-leg brace will be most helpful. The challenge is helping polio survivors face the pain of their abusive pasts and accept appearing more disabled now -- by slowing down, asking for help and using new adaptive equipment -- so they won't become more disabled later in life.

Post-Polio Network Office Accommodation

In June we are expecting at last to move into our office within the Royal South Sydney Community Health Complex, Joynton Avenue, Zetland. It is a ground-floor office with accessible facilities close at hand. We have had some furniture donated as a start to outfitting it, but could use some filing cabinets and bookcases so that we can set up our extensive library to enable its use by members. If anyone has such items in good condition, and they are willing to donate them to a good cause, please ring our Office Co-ordinator, Management Committee member Ruth Wyatt, on (02) 9416 4287. Ruth reports that she wasn't exactly inundated with offers of help from members willing to volunteer their services for a roster to operate the office. Please help if you can. The more people who can help, the more the load is lessened on the Management Committee. Working as a volunteer for the Network may also help you to qualify to receive the Mobility Allowance. Ruth is looking forward to hearing from you soon.

Vale - Gwen Tubb
It is with great sorrow that we advise of the death of Gwen Tubb who passed away on 20 April 1998 after a short illness. Gwen was a foundation member of the Network, and its Treasurer for four years. Regular Seminar attendees will remember Gwen as the ever-smiling person who greeted them on arrival and made sure everyone had a name tag. She warmly welcomed first timers and introduced them around. Committee Members remember Gwen's meticulous notes and her ability to fill in the gaps in our "post-polio memories". Gwen provided great support and encouragement to all her polio friends and happy memories of her will linger with us always.

Nutrition and Post-Polio

Lauro S Halstead, MD
National Rehabilitation Hospital, Washington, DC

Lauro S Halstead, MD, is Director of the Spinal Cord Injury Program and Director of the Post-Polio Program at the National Rehabilitation Hospital in Washington, DC. He is also Clinical Professor of Medicine at the Georgetown School of Medicine in Washington, DC. Dr Halstead received his MD from the University of Rochester and a Master's in Public Health from Harvard University, where he took several courses in nutrition. He had polio in 1954 at the age of 18 and helped to organize the 1984 and 1986 Research Symposia on the Late Effects of Poliomyelitis in Warm Springs, Georgia.

This article is reprinted from "Polio Network News", Vol. 14, No. 1, with permission of Gazette International Networking Institute, 4207 Lindell Blvd., #110, Saint Louis, Missouri 63108-2915, USA. Permission to reproduce the article must be sought from Gazette International Networking Institute.


This is the story of my personal journey to learn more about nutrition. The path I followed and what I discovered along the way are specific to my body, my nutritional needs, and my disability. Some of the principles I learned may apply to others, but the particulars relate only to me. I would no more recommend you follow my specific diet than I would urge you to take someone else's medication. If you want to change your eating habits, please do it under the guidance of a licensed nutritionist. That's what I did.

As it turned out, the nutritionist I worked with had a special interest in chronic disease, although she was unfamiliar with post-polio syndrome. Before going to her, I held what I considered was a traditional but "enlightened" view of nutrition. In other words, I was eating the kind of diet typically recommended in the medical literature and by the experts for a 61-year-old male with my medical history. What I quickly discovered is that "enlightened" is not always smart.

When I was in residency training many years ago, I attended a lecture by an eminent nutritionist who said males should restrict their intake of "visible" eggs to one or two a month; so I reduced mine to maybe half a dozen a year. A short time later, I heard another well-known nutritionist say he was starting his newborn son on 2% milk; I switched that night from whole milk (3%) to low fat (2%), and over the years limited my intake to what I used with cereal.

Then there was the issue of girth control. In the interest of watching my weight, I tried to avoid snacks and sweets, except on special occasions. Fortunately, I don't have a very sweet tooth, so this adjustment was not all that difficult.

And so it went. Over the years, I cut out greasy foods, then lightly fried foods, and finally even lean, red meat. By the time I saw the nutritionist for my first appointment in February 1996, my diet consisted, more or less, of the following: for breakfast, one to two large glasses of orange juice, a bowl of raisin bran with milk and one banana; for lunch, a large tossed salad with low calorie dressing, a half-pint of low-fat yogurt and fresh fruit; and for supper, typically fish or chicken (with occasional red meat), vegetables, potato or pasta, and a salad. I also drank a soft drink mid-morning and mid-afternoon most days, and had a nightcap at bedtime, most evenings.

Sounds pretty healthy, right? That's what I thought, too, especially when I considered that my cholesterol was normal, my weight was essentially the same as when I graduated from college, and people in the cafeteria line never tired of saying, "Wow, that's a healthy lunch!"

Well, my nutritionist didn't agree. When I returned after the first week with a diary of everything I had eaten and the amounts, her comment was, "This is incredible", and she didn't mean it as a compliment.

As it turned out, she thought almost everything I was doing was wrong. The bananas and orange juice were "empty" calories, the soft drinks were a sugar fix, and my lunch was skimpy at best. In short, I was on a starvation diet, in her opinion, which she calculated at 1300-1500 calories per day.

Well, if that were true, I asked, why wasn't I losing weight? Her explanation was that the body makes certain metabolic adjustments to accommodate different caloric intakes.

But it wasn't the caloric intake that bothered her so much. My biggest sin was the small amount of protein I was eating (about 5-6 ounces per day). "No wonder you're tired and weak. Anybody would be on that diet", she said. I, of course, thought instantly to myself, "Is this the cause of post-polio syndrome? Are we all just eating the wrong diet?"

The short answer is "no". But it's clear that a sensible diet can make you feel much better, as I was to find out fairly soon.

The main goals of my new nutritional plan were to increase the amount of protein, increase the number of calories, avoid the empty calories of orange juice and soft drinks, and finally, cut back on that nightcap.

While all of this was going on, I spent a fair amount of time at the library reviewing what's known about protein metabolism and what would be particularly relevant for polio survivors. Here's some of what I learned.

First, proteins are in all human cells. In fact, they form the basic building blocks for each cell, its metabolism, and life itself.

Second, proteins are made from amino acids, and new proteins are being made (synthesized) and broken down (degraded) each day. This protein turnover applies to muscle cells, as well, which are constantly synthesizing new protein every day. Some of this new protein comes from what we eat and some comes from "re-built" protein using amino acids already in the body.

The third thing I learned, and most important for persons with post-polio syndrome, the largest "consumer" of protein in the body is muscle.

All of this means that for the muscles to have a fighting chance to maintain or increase their strength, there has to be a generous amount of protein in the diet. We are not carnivores by chance.

Knowing this, I changed my views on meat and other protein in a jiffy. At the same time, I relaxed my attitude about calories, as well. In summary, I experienced a "nutritional makeover".

It has been almost a full year since my dietary epiphany. I now eat lean meat regularly, along with nuts, fish, eggs, oatmeal, and anything else with protein. I don't eat fruit for snacks as much, and most days, instead of a soft drink, I drink a home brew fortified with a protein supplement.
The results? My daily intake of protein has more than doubled to at least 12 ounces per day and my total calories are now somewhere between 1800-2000 per day. My weight is essentially unchanged. The best part is that my "good" arm, which used to be tired all the time, feels stronger, gets less fatigued at the end of the day, and seems to recover faster when it gets overworked.

Is this a "cure-all"? Absolutely not. I estimate my improvement in the 2-5% range, but it hasn't impacted all of my symptoms. I still get intense fatigue in the afternoon. My tank of gas is totally depleted by the end of the week. I'm still searching for new ways to pace myself to conserve what energy I have. Is my new diet healthier living through healthier eating? I believe so. Will it work for others? I don't know. What I have learned for sure, is that sensible eating under the guidance of an experienced nutritionist, is good advice for everyone.

No Link Found Between Contaminated Polio Vaccine and Cancer

Members who saw the documentary (screened 13 April 1998 on the ABC's Four Corners program) about the contamination of the early polio vaccine in the late 1950s / early 1960s, may be interested in this news release from the American Medical Association.

Americans who were administered a polio vaccine that was contaminated with an ape virus are not at increased risk for cancer, according to an article in the January 28 issue of The Journal of the American Medical Association [JAMA, 1998; 279; 292-295].

Howard D Strickler, MD, MPH, from the National Cancer Institute, Bethesda, Maryland, and colleagues determined the risk of developing rare human tumors among Americans who received the contaminated vaccine. The DNA of simian virus 40 (SV40) has recently been detected in tumours including ependymoma (brain tumor), osteosarcoma (bone tumor), and mesothelioma (tumor of the lining of the lung and chest cavity).

The vaccine was given to tens of millions of Americans between 1955 and 1963. By 1961, between 80 and 90 percent of all US children younger than 20 years had been injected with the vaccine containing SV40. The virus can cause cancer in rodents.

The authors write: "Our study failed to detect any significant increases in the risk of cancers reported to contain SV40 DNA among the birth cohorts exposed to SV40-contaminated vaccine. In effect, ependymomas and osteosarcomas have remained rare cancers, while the rising rates for mesotheliomas have involved older age groups unlikely to have received SV40-contaminated vaccine."

The researchers continue: "Thus, approximately 30 years after millions of Americans were parenterally exposed as infants or children, the absence of a discernible effect in our study adds to the evidence that no relation exists between exposure to SV40-contaminated vaccine and the development of cancer. As the exposed cohorts mature, however, it will be important to continue monitoring of cancer risks."

The authors add: "It is important that this report not be viewed as strong evidence against the role of SV40 as a human pathogen. For example, SV40 may have been in the human population for some time, unrelated to vaccine exposure, as suggested by the finding of SV40 antibodies in serum samples around the world that were collected before introduction of poliovirus vaccines. It is also possible that SV40 only has tumorigenic [causing tumors] potential in humans exposed under different conditions and higher levels of virus than were associated with poliovirus vaccine."
Support Group Report

Bernie O'Grady
Support Group Co-ordinator : Post-Polio Network (NSW) Inc

Phone: (02) 9688 3135


I thought I would start my column this issue with a brief description of what we mean when we talk about a "Support Group".

A Support Group is a means whereby people are able to meet in person on a regular basis, and it is a means by which they can share information and review their lives - to notice that it is not the same as the average able-bodied person's. In a Group we can come to appreciate each other's problems and share about how each sets goals to live through the day.

A Group provides an opportunity to make new friends with whom you can talk about your polio life. You will be able to talk about your current worries and problems and hear how others have managed their own difficulties. By participating in a Group you do not feel isolated by your problems; you learn that other people have the same problems as you. For example, you hear from people how tired they get, and how they have learned to pace their day. By sharing your own problems in a helpful and positive atmosphere, you help others and are relieved of a lot of stress by hearing their positive stories.

If members find travelling difficult, you don't need to always meet in person. You can still keep in touch through the telephone or by writing letters, and you can still give support to each other.

If a Network member wishes to join a Support Group, then give your local Convener a call, or get in touch with me and I will try to put you in contact with a Support Group in your area.

Conveners Wanted

The Network has a number of members who have expressed interest in joining a Support Group in parts of metropolitan Sydney and in various country towns in New South Wales, but there are insufficient Support Groups currently established in these areas.

The Convener of a Support Group plays an important role in bringing people together, and in creating a positive, caring, and helpful environment where people are given equal time to help and be helped. Don't be put off, however, by this description. The main skills you need to be a successful Convener are a friendly, outgoing personality, the ability to help people to participate in the Group, and the ability to keep the conversation flowing between all members by curbing the natural enthusiasm of some to "hog the limelight". Once a Group forms, its members decide where and how often to meet, and what format the meetings will take. These small Support Groups are informal affairs, run under the Network's guidelines. Office bearers are not elected, and lobbying or fund-raising activities are not undertaken. Such activities are not appropriate because they divert members' limited energy away from their main focus - providing mutual support.

We need more Conveners throughout New South Wales - can you help? If you would like to learn more about Support Groups and how to go about convening one, please give me a ring and I will send you out an Information Kit. Please also read about the Convener's Workshop to be held in Canberra on Sunday 30 August 1998 (see page 3).

Since the March Newsletter, the Network has been successful in having two more Support Groups formed.

Shoalhaven Heads Support Group        Convener : Dorothy Schunmann

The first meeting was held on 17 April with six people attending. Everybody was excited to meet one another and eager to share their polio stories.

The Support Group meets on the third Friday of each month from 2:30 to 4:00 pm in the Nowra Council building underneath the Library, Berry Street, Nowra. If you would like to join this Group, please give Dorothy a ring on (02) 4448 7541.

Northern Rivers Support Group        Convener : Rosalie Kennedy

The first meeting was held on 21 March at Lismore, with six people attending. Rosalie has advised that meetings will be held bi-monthly in different towns in the Northern Rivers area, and that the time and place of the meeting will be advertised in the local newspapers and on the local radio stations. For information on up-coming meetings, give Rosalie a call on (02) 6620 2329.

And now for news of other Groups ...

Grafton Support Group        Convener : Susan Stewart

This Support Group has been in recess, but past Convener Susan Stewart is keen to have the Group up and running again. Members can give Susan a call on (02) 6644 7789.

Lower South Coast Support Group        Convener : Cliff Cook

Cliff is presently establishing this Support Group, and making contact with members who have expressed interest in joining a Group in his area. Cliff is endeavouring to obtain a suitable place to convene the meetings. Further details will be published in future Newsletters. Cliff can be contacted on (02) 6494 4113.

Hawkesbury Support Group        Convener : Irene Alexander

Irene would like to make contact with members in the area to start up a Telephone Support Group. Please telephone Irene on (02) 4578 1010.

Nyngan Support Group        Convener : Marion Wardman

Marion wishes to hear from members in her area who are interested in forming a Telephone Support Group. You can telephone Marion on (02) 6832 1350.

Wellington Support Group        Convener : Hugo Orro

Hugo would like to hear from members in the Wellington / Dubbo / Orange area who would like to join in a Telephone Support Group. Members can call Hugo on (02) 6846 7272.

Desperately Seeking Susan ...

Well, he's not really desperate, but Brian Wilson (ACT Support Group Convener) would like to make contact with Susan Scully, with whom he spent some time in hospital as a child. Brian sent in the following newspaper clipping from 1951.

Victims of Polio are Inseparable

Polio victims Brian Wilson, of Revesby, and Susan Scully, of Campsie, both aged 2, are known in Canterbury District Memorial Hospital as "the inseparables".

They are in adjoining cots, play together, eat together, have their baths together, and do their exercises together.

If one cries, the other follows suit.

Both entered hospital last February, and are wearing irons to help the muscles of their paralysed legs back to strength.

They have just walked together, after nine months in bed.

If anyone out there knows how to get in touch with Susan, Brian [(02) 6293 2747] would love to hear from you.


From the Archives

Member David Luck, ACT, was helping his neighbour take up some linoleum and came across an old newspaper, The Sunday Sun & Guardian dated 7 January 1951. The following item attracted his attention.

Spread of polio causes alarm: bed shortage - 59 cases in five days

Spread of polio is causing fresh alarm among hospital authorities. The disease has infected 59 people in the first five days of this year. The rush of cases has caused a critical bed shortage at Prince Henry Hospital which handles infectious diseases.

Prince Henry Hospital medical superintendent, Dr CJ Walters, said yesterday a conference would be held with Health Minister O'Sullivan tomorrow. Dr Walters said: "We have enough accommodation for infectious cases. The difficulty is to get other hospitals to take back patients who have got over the infectious stage. We have between 70 and 80 patients ready to be discharged back to their own hospitals."

Dr Walters said many Sydney hospitals were reluctant to accept chronic polio sufferers, because they sometimes had to remain for a year or longer. "Unless we can overcome this problem at tomorrow's conference, then a saturation point will be reached at Prince Henry Hospital shortly", he said. "The Government may have to direct other hospitals to accept patients ready for discharge from our hospital. The alternative is to open another infectious diseases hospital", he said.

The above item will strike a chord with many of us. If you were in Prince Henry at this time, why not drop a line to the Editor and tell us your experiences. Also, we'd love to publish more from papers of the era. If you have any old newspaper clippings that you would like to share with other members, please send a copy to the Editor.

A Plea for Strong Lightweight Calipers

Roger Smith from the ACT recently sent me this poser. Do any members have information or advice for Roger that could be shared through this Newsletter?

For many years I have worn calipers, one long and one short. The time has now come to have a long caliper made to replace the short one.

I have made some enquiries through The Northcott Society concerning lightweight calipers made from carbon fibre. I was told that they may not last any longer than stainless steel and would probably cost about $1000 more. Such calipers are made with stainless steel joints anyway, but the total weight is very light.

It is hard to believe that in this technological age there is not a strong, lightweight metal than can be used to make calipers. I was wondering if anyone could provide any information concerning lightweight calipers, or suitable metals that may be used.

Wouldn't it be great to have calipers you had confidence in and yet they were so light you hardly knew they were there?


Unregistered Vehicle Permits - Update

As promised last issue, I sought more information from the Roads and Traffic Authority (RTA) about the Unregistered Vehicle Permit which can be obtained for an electric scooter or wheelchair. The RTA promptly forwarded the following information, for which we are grateful. Please note that it was reported in the last Newsletter that such Permits are free for aged pensioners. Sadly, this turns out not to be the case; member Janet Malone was misinformed. The RTA is developing a brochure about this Permit; I'll keep in touch with them and let members know when the brochure becomes available. In the next issue I'll also be reporting on an investigation that member Arnold Davies is doing regarding how you can be covered if you use your scooter in a shopping centre.

Motor Traffic Regulations 34(1)(k) provides an exemption from registration and licensing for operators of conveyances for the disabled, provided the vehicles meet the following criteria:

1. the vehicle must be specially constructed to be used, and while upon a public street is used, solely for the conveyance of a disabled person;
   
2. the vehicle weighs not more than 110 kgs; and
   
3. it is not capable of travelling at more than 10 km/h.