POLIO NSW INC formerly Post-Polio Network (NSW) Inc
N E T W O R K N EW S
Incorporating – Polio Oz News
Editors: Nola Buck and Susan Ellis PO Box 2799, North Parramatta Email: [email protected] NSW AUSTRALIA 1750 Website: www.polionsw.org.au Phone No: (02) 9890 0946
Patron: Professor Emeritus Sir Gustav Nossal AC CBE FAA FRS
President’s Corner Gillian Thomas
Welcome to another combined issue of Network News and Polio Oz News.
Our Mid-Year Seminar will be held on Wednesday, 23 July at the Northcott Building in Parramatta – full details are on page 2. A Seminar Registration Form is enclosed – please be sure to RSVP by Friday, 18 July to ensure we cater sufficiently. There is a great line-up of speakers so you won’t want to miss the opportunity to hear their presentations.
It is also Membership Renewal time. Enclosed, you will find one of two forms, depending on your financial status. If you are currently paid up to 30 June 2014 (your address sheet reads Renewal Due On: 1/07/14) you will find a Membership Renewal Form enclosed for the period 1 July 2014 to 30 June 2015. Could you please confirm, complete, or amend your details as given on the Form, and return it with your subscription to the Treasurer at the Polio NSW Parramatta postal address above. A growing number of members appreciate the ability to pay their membership subscription via internet banking. If you take up this option, please ensure your name is recorded on the payment and email the payment transaction details to
There is still a number of people whose annual subscriptions are overdue, and so their address sheet reads Renewal Due On: 1/07/13 (or earlier). In this case, the Membership Renewal Form covers more than one year’s membership. We would appreciate prompt payment of the outstanding dues, together with the current dues, to ensure that you continue to receive your newsletter and other mail-outs. Polio NSW is self-funded and needs your continued support to enable us to keep providing services to polio survivors and their families.
If you are already financial beyond 30 June 2014 (again as shown on your address sheet) , you will receive a Membership Update Form which gives your current details but does not request payment of a membership subscription. Please check your details and be sure to return the Form if any amendments are required.
Those members who came along to Polio Australia’s inaugural participation in Northcott’s Walk With Me fund-raising event last September had a great time. The good news is that the Walk is on again this year on Friday, 12 September. With donations received this year being split 50/50 between Polio Australia and Polio NSW, you can support not only Polio NSW but our national organisation. Full details are on the “Walk With Me” website
This year Polio NSW celebrates 25 years of support for polio survivors in our State. We are holding a special anniversary lunch in conjunction with the Annual General Meeting and End-of- Year Seminar, on Saturday, 29 November 2014, at Burwood RSL Club. Further details will be in the next issue of Network News . Please be sure to put this date in diary in your diary now!
Unless otherwise stated, the articles in Network News may be reprinted provided that they are reproduced in full (including any references) and the author, the source and Polio NSW Inc are acknowledged in full. Articles may not be edited or summarised without the prior written approval of Polio NSW. The views expressed in this publication are not necessarily those of Polio NSW, and any products, services or treatments described are not necessarily endorsed or recommended by Polio NSW.
Polio NSW Inc Network News – Issue 90 – June 2014 Page 1
Date: Wednesday, 23 rd July 2014
Time: 9:30 am – 3:00 pm
Venue: Conference Room, Ground Floor, The Northcott Building 1 Fennell Street, Parramatta
A special arrangement has been made to enable members and friends attending the Seminar to park in the Parramatta Leagues Club car park, thanks to the generosity of the Club management. Simply tell the security person at the car park entrance in Grose Street that you are attending the Polio NSW Seminar in the Northcott Building, and please park in the right-hand back corner of the car park. You can then enter the Northcott Building via the gate into its adjacent playground.
Refreshments: Morning tea and a light lunch will be provided (cost subsidised by Polio NSW)
Cost: $10 per person – please RSVP by Friday, 18 th July 2014
If possible, please return the enclosed Registration Form with your payment to the Polio NSW Office by 18 th July. Otherwise, you can pay when you arrive at the Seminar, however, if you elect to do this, you MUST still contact the Office either by email, [email protected], or telephone 02 9890 0946 by Friday 18th July to confirm your attendance so sufficient catering can be arranged.
Program: 9:30 Registration
10:00 Ms Jenny Ly – Senior Health Promotion Officer with Arthritis and Osteoporosis NSW – “Complimentary Medicines and Health Education”
11:00 Morning Tea
11:30 Mr Robert McLeod – CEO Sydney Cochlear Implant Centre - “The Work of SCIC and the Cochlear Implant”
12:30 Lunch
1:30 Emeritus Professor Barry Baker – Former Prof of Anaesthetics at Sydney University – “The Part Polio Played in the Formation of Intensive Care Units and Current Management of Ageing Polio Patients Particularly During Surgery ”.
3:00 Close
All are welcome – we look forward to catching up with everyone on 23rd July 2014
Page 2 Network News – Issue 90 – June 2014 Polio NSW Inc Presenters: Ms Jenny Ly is currently the Senior Health Promotion Officer at Arthritis and Osteoporosis NSW. Her role involves educating groups in the community and is largely focused on the range on Healthy Lifestyle Programs for people with arthritis or osteoporosis. Jenny is a pharmacist by profession and has a special interest in complementary medicines and health education.
Mr Robert McLeod has had many years as a banking and finance executive. He has been six years with Sydney Cochlear Implant Centre (SCIC), the last four as Chief Executive. SCIC is the third largest cochlear implant programme in the world. Robert has a 17 year old son who was born profoundly deaf and who has 2 cochlear implants. Robert said this is a special reason for his involvement with SCIC.
Emeritus Professor Barry Baker graduated MBBS from the University of Queensland in 1963 and doctor of philosophy (DPhil) from Magdalen College in the University of Oxford in 1971. He has specialist qualifications in anaesthesia (FANZCA and FRCA) and in intensive care. He was reader in Anaesthesia, University of Queensland 1972 to 1975. Foundation Professor of Anaesthesia and of Intensive Care, University of Otago 1975 to 1992, and Nuffield Professor of Anaesthetics, University of Sydney 1992 to 2005. He is currently the Dean of Education for the Australian and New Zealand College of Anaesthetists. We very thrilled to learn that Barry was awarded an AM in this year’s Queen’s Birthday Honours: “For significant service to medicine, particularly to cardiovascular anaesthesia, to medical education, and to professional medical organisations ”. Barry also has a keen interest in the history of medicine. He has more than 200 publications in the academic and scientific literature on anaesthetic, physiological and historical topics.
Paul Galy was a presenter at the recent Polio Health and Wellness Retreat held at Baulkham Hills. Many of our members are familiar with Paul who is a Footwear Practitioner and orthotist. Paul has written a book called “The 4 th of May: The Memories of Paul Galy OAM” which he discussed with us at the Retreat.
Born in Hungary, Paul was amongst the first Hungarian refugees to arrive in Australia after the Hungarian Revolution in 1956. He came from a long family line of corrective footwear manufacturers. The family business dates back at least to the early 1880s when a factory was established in Budapest Hungary and became one of the largest manufacturers of orthopaedic shoes, artificial limbs and callipers in pre-WWII Hungary. His book has been described as follows:
“The author keeps the reader intrigued as to the outcomes of all the characters as they made their entrances into the story of his memoirs. He explores their frailties and their strengths, and the fight for survival that must never be forgotten! This truly wonderful chain of events is further enhanced with the author’s own drawings which graphically interpret the emotional roller-coaster ride that is his story.”
In June 2007 Paul was awarded a Medal of the Order of Australia (OAM) for service to the community as a medical grade footwear practitioner and manufacturer.
Members were fortunate to have been able to purchase a signed copy of Paul’s book at the Retreat. We have two copies remaining for purchase from the Polio NSW office at a cost of $35.00 each. For those interested please phone on 9890 0946.
Polio NSW Inc Network News – Issue 90 – June 2014 Page 3 by Gillian Thomas
It is with great sadness that we advise of the death of Neil von Schill, past Support Group Co-ordinator and Secretary of Polio NSW.
Neil was born in 1947 and contracted polio in 1950 in Dubbo where he was hospitalised for six months. His profession was in education and he taught for over thirty years in regional NSW, including twenty years as a Primary School Principal.
Neil joined Polio NSW (then known as Post-Polio Network (NSW) – or, simply, the Network) in 1992 and shortly afterwards became the Convener of the Network’s Albury/Wodonga Support Group.
In 1998 Neil was forced to take medical retirement from the NSW Department of Education because of the onset of the late effects of polio. His retirement marked the start of many years of dedicated volunteer work for the Network/Polio NSW and, more recently, Polio Australia. I first met Neil in person in Canberra in 1998, at a Support Group Convenors’ Workshop conducted by the Network.
At our 1999 Annual General Meeting (AGM), Neil expressed his willingness to be an advisor to the Management Committee on regional issues. He was subsequently appointed as Support Group Co-ordinator and his more remote location than previous Co-ordinators meant he brought a different perspective to the role. Neil travelled extensively around NSW (including the ACT) between 1999 and 2011, developing and nurturing Support Groups. In our Annual Reports Neil reported that it was his privilege and delight to serve his fellow polio survivors in this way, and he was unstinting in his praise for the efforts of Support Group Convenors and Regional Representatives. He was overwhelmed by the friendly response, welcoming acceptance and encouraging enthusiasm that he encountered as he maintained contact with Support Group Convenors by phone, through correspondence and personally over the next twelve years.
Neil joined the Management Committee at the 2003 AGM while maintaining his Support Group Co- ordinator role. At the following AGM Neil was also elected as Secretary and for next 7 years he more than capably managed the dual roles, and over that time became my right-hand man.
Between 2003 and 2011 Neil also arranged 5 biennial Country Conferences around NSW (Dubbo, Beresfield, Ballina, Wagga and Bomaderry) and also assisted with the organisation of Metropolitan Seminars. He organised the Polio Australasia Conference in Sydney in May 2007 and was instrumental in the agreement at that forum to form Polio Australia. He served on the Polio Australia Management Committee from its establishment in 2008 until 2011, the latter years as Treasurer. Neil was a key member of Polio Australia’s lobbying delegations to Canberra where we sought funding to support Australia’s forgotten polio survivors.
In 2011 Neil suffered a number of strokes, with the final one robbing him of strength on his right side (cruelly, the side that was less affected by polio), and severely affecting his speech. Regretfully he was no longer able to maintain his volunteer work and stood down at the 2011 AGM, creating an enormous hole at that time in our capacity to support polio survivors.
Following the strokes Neil’s health deteriorated further and he was admitted to a Nursing Home. He passed away on 16 May 2014. John Tierney, Peter Garde and I represented Polio NSW at Neil’s funeral in Albury the following week. Other attendees included Mary-ann Liethof, Polio Australia’s National Program Manager, and Convenor Isabel Thompson (with her husband, Clarrie) from the Wagga Support Group, Convenor Margaret Bennie from the Albury/Wodonga Support Group, and Ann-Mason Furmage and Ruth Robinson from the Physical Disability Council of NSW. Apart from family members, also present were a large number of friends from Neil’s teaching days and community activities. Neil was given a standing ovation at the end of the funeral service – a great send off, as befitted a man of his stature in the communities he worked in and for. Neil’s wife, Gail, has asked me to thank the Polio NSW members and friends who passed their condolences on to her and her daughter, Bev – they are very appreciative of your thoughtfulness.
Page 4 Network News – Issue 90 – June 2014 Polio NSW Inc In conclusion, Neil did not let ego or ambition dictate his many activities – he worked in roles where he knew he could make the most impact; he didn’t aspire to be a leader but he nevertheless was. His work was recognised many times over the years, including being awarded Life Membership of Polio NSW. These are a few more examples:
In 2002 the Rotary Club of Albury North presented Neil with a Shine On Award for his endeavours both with Polio NSW and other community organisations. The award is presented to people with disabilities who are making an outstanding contribution to their community, and who, by their actions, serve as Shining Examples to the community.
Neil was the 2011 recipient of the Jack Irvine Memorial Shield , awarded by the Disability Advocacy and Information Service, Wodonga. The Shield is awarded each year to an individual who has demonstrated qualities of leadership, self-advocacy, is a champion for community inclusion, and whose activities benefit the lives of people with a disability in the region and beyond. The award recognised Neil’s work for Polio NSW, Polio Australia, the Physical Disability Council of NSW, and his active membership of the Albury Access Committee.
In presenting the Shield, Mrs Goodman, a life member of DAIS, said that Jack Irvine would have been proud of the achievements of Neil von Schill and congratulated Neil on his hard work to improve access and support services for people with disability throughout NSW and Australia.
In 2013 Polio Australia presented the above plaque to Neil acknowledging his “ outstanding service over many years to Australia’s post-polio community”. Neil is pictured above, holding the plaque, with his daughter, Bev (L), and wife, Gail.
I have not only lost a colleague and a dear friend, but Polio NSW, Polio Australia and Australia’s polio survivors have lost a tireless worker and champion for their cause. A tribute page for Neil is online at
Polio NSW Inc Network News – Issue 90 – June 2014 Page 5
by Anne Buchanan Polio NSW Committee Publicity Officer
This book is the story of Peter Preneas’ life. It tells how he was snatched from his mother by his father as she was escaping from a brutal marriage. Peter is a former Polio NSW Management Committee member and Assistant Webmaster.
It is somewhat difficult for me to be completely objective regarding this book as it is a ‘family saga’ about the family of a close friend of mine. Therefore, I have questioned a number of people who have also read the book, but who personally know nothing of the people in the story other than what they have read. Everyone I asked was of the same opinion as me in that the book is a jolly good read. In fact, one lady told me she couldn’t put it down and had read it straight through in less than two days.
It is the story of Yvonne, who at a rather young age, falls in love and married. Her husband convinces her to leave the security of her family in Brisbane and move with him to Cairns where he opens a shop and where Yvonne is expected to work very hard for long hours. It is here that it becomes obvious that her husband, Michael, is not the person she thought he was. Sad and disillusioned her life becomes something of a nightmare.
After the birth of their first child, a son, Yvonne decides that a trip back to Brisbane to the comfort of her own family may help improve her life. Her secret plan being to stay in Brisbane. Sadly this proves not to be the case as just before the train leaves Cairns, Michael jumps on board, tears their son from her arms and tells her if she ever tries to get him back he will kill the baby. Believing her husband quite capable of carrying out his threat, Yvonne felt she had no choice but to relinquish her precious baby for his own safety. So they did not meet again for 32 years.
The story then tells us about the effect these events have on the lives of all concerned. Yvonne, her first born son, her relationships with her family, friends, work colleagues etc. After some time, Yvonne meets and marries another man and they have a family of their own and these children’s lives are also affected by their mother’s past life. It is a past they know nothing about and therefore there is so much about their mother which they cannot understand.
The family is reunited after more than 30 years and as so often happens in such cases, even this family reunification brings out rather complex and mixed emotions in all concerned. It is not all hassle free and straight forward.
Does the story have a happy ending? I guess if I tell you that Kristina Olsson, the author, is the sister of the little boy snatched from his mother’s arms in Cairns, you might be able to guess the ending almost. It is the events of all those ‘lost’ years that make this such an interesting story.
Page 6 Network News – Issue 90 – June 2014 Polio NSW Inc Anne O’Halloran, Polio NSW Seminar Co-ordinator, has recently corresponded with Jillian Skinner, MP, regarding accommodation for rural and regional patients. She has passed on the reply below, hoping that it might be of benefit to some of our members.
Polio NSW Inc Network News – Issue 90 – June 2014 Page 7 In relation to Norland House, Ashfield, there have been no changes to this site and the Sydney Local Health District continues to offer all 26 rooms to accommodate rural and regional patients. Further information regarding Norland House can be obtained by contacting Ms Noeleen Franks, Patient Accommodation Officer, on 9515 9901.
For Patients accessing Royal Prince Alfred Hospital (RPAH), arrangements are also in place with several local hotels to provide patients with discounted accommodation. The distance of these hotels from RPAH ranges from a one minute walk to a 10 minute walk.
Thank you again for raising your concerns with the NSW Government.
Yours sincerely,
Melinda Pavey MLC
Reprinted from the Newsletter of IDEAS, May/June , 2014
Australia Post has increased the cost of postage stamps to 70c each. People on a concession card are now able to apply for a ‘MyPost Concession Card’.
This card will allow you to purchase up to 50 concession priced stamps each year i.e. @ 60c each. Upon application for this card, you will also receive 5 free concession card stamps.
To apply for a MyPost Concession Card you have to fill out an application form and take the completed form with your Government Concession Card to your local post office. You should then receive your MyPost Concession Card and the booklet with 5 free stamps within 14 days of lodging your application.
In the USA there is a growing movement to adopt a new ‘disabled’ symbol. The new version shows a person actively engaged with their world, rather than focusing on a passive wheelchair user. What do you think of it?
For more information visit
Page 8 Network News – Issue 90 – June 2014 Polio NSW Inc
Max Baldwin is a member of Polio NSW. He contracted polio in 1929 in Ballina NSW. He has supplied us with this article published in SKI Australia magazine, July 1963. Max states that he is now 82 and still going strong.
Max Baldwin adjusted a ski to his boot, strapped a polio withered left leg to the right, gazed wistfully down a long stretch of snow at Kiandra, lunged a few feet and fell on his face. He grinned, got up on to the skis, and tried again. At the end of a week he had covered 40ft before crashing.
A Frenchman, who was holidaying in Australia, intently watched Baldwin each day gathering great respect for the determination of the Australian. Finally, he approached Baldwin’s friend, Lionel Anet, and in the French language – he couldn’t speak a word of English – he offered to show “the determined young man” how he could master skiing.
He interpreted through Anet that in Europe soldiers who had lost a leg in battle were skiing in the Switzerland Alps with the ease and agility of the average physically fit person. He showed Baldwin how he could use his self-made chromium-plated sticks he used for walking to balance and propel him. They would not quite provide the same propelling style as the small skis used in Europe but would do.
Fortunately for Baldwin his friend Anet was an expert toolmaker. During the summer months he moulded the chromium-plated drawn steel crutches into outriggers so that Baldwin could remove the rubber tips from the bottom to attach small skis of 20 inches in length. This allowed him to balance and propel himself on the snow.
The next year he started off on the gentle slopes of Kiandra and Thredbo and visited the Perisher Valley.
Today Max Baldwin is an accomplished skier, capable of taking the vertical descent from the top to the bottom of Thredbo. The steepest pinches have no terror and the slalom course no worry at all.
Baldwin has won club events at Thredbo and Perisher Valley, but as he is now a professional gymnast does not enter in any open or championship events.
Max Baldwin is one of Australia’s most remarkable sportsmen. He has proved that the human being who has sufficient courage and the will to try can overcome almost any physical disability. This is Baldwin’s answer to the person who is inclined to give up hope or refuses to make the attempt.
He represented Australia at the 1956 Melbourne Olympic Games as a kayak canoeist, has won the Freearm and Roman Rings individual gymnast championships of NSW, plays a good game of tennis and accounts for more people than can beat him on the squash court.
An instructor at the City of Sydney Police Citizens Boys’ Club, Woolloomooloo, he holds daily classes for 40 schoolboys and an evening class for a teenage squad. Gymnasts who hope to go places in one of the most exacting sports come from all parts of Sydney for lessons.
Baldwin says, “ I am not embarrassed by a physical handicap. There was nothing I could do about it. It just happened to me. I am prepared to help people unfortunate enough to be under the same physical handicap as myself. I beg them not to pity themselves. If they come to me I will advise them what they have to do and, if they want it, give them lessons in skiing, gymnastics, canoeing, tennis or squash. They only have to pick up enough courage to ‘give it a go’ to discover just how easy it is. I know how these people feel because it happened to me. ”
“At school I felt right out of the picture, as a teenager I worked in a boot factory and buried my head in books, avoided company. It was not until I was 20 years old that I attempted to play any sport. ”
Today there would be a no more physically fit athlete than Max Baldwin, with the deep chest, powerful shoulders and muscular arms of a welterweight boxer.
Polio NSW Inc Network News – Issue 90 – June 2014 Page 9
Baldwin, born a healthy child, contracted polio at one year and nine months old. At first he was paralysed in both legs and doctors feared that he would never be able to walk.
But they persevered and aided by masseurs and the constant affection of his mother they were able to save his right leg. There was no hope of ever gaining the use of the left leg, which has remained paralysed from the hip down.
Such a disability is a tremendous handicap at school. Those years of his life were not exactly happy and he was glad when his schooldays were over.
The years after school were also trying. Max was content to go into a shell. He hated being pitied and did not seek company. Most of his spare time was spent reading books, slipping quietly into the darkness of movie theatres, hobbling home to find the comfort of his bed.
It did not help him that his brother Beres and sister Gwenda were two perfect physical specimens, expert acrobats, gymnasts and dancers. What Max didn’t realise was this. His self-pity was making it tough for his brother and sister. It took them six years to convince Max that he had just as much right as anyone else to take an active interest in everyday life and sport. Finally with a lot of coaxing they got him into a gymnasium.
That was the turning point of Max Baldwin’s life. He soon found out that a useless leg did not stop him from becoming expert on the parallel and horizontal bars, on the pommel horse and in freearm gymnastics. Once convinced he never gave up.
In 1950 he became the NSW Roman Rings and Freearm champion. He was a member of the YMCA A grade team that won the NSW championship in 1951. And having conquered a sport that demands the highest technique in balance, flexibility and agility, strength and callisthenic movement he knew nothing was beyond his reach.
In tennis, although he had to use one crutch, he was still able to move with a considerable amount of speed and jump quickly into half court to meet a return. He quickly overcame the difficulty of serving. Able to use only one hand he tossed the ball high into the air meeting it on the way down.
From tennis he took an active part in fencing and archery. These sports, however, took second place to the fascination of canoeing.
He took up kayak canoeing in 1952 and in 1954 he was the Australian 1,000 and 10,000 metres singles champion and the titleholder against allcomers in the 100 mile marathon. He won the 1,000 metres single kayak in 5m 10s and the 10,000 in 54m 40s, both remarkably good times 10 years ago.
The most remarkable canoeing performance was winning the 100 mile marathon. The marathon was a tough race from the Nepean Bridge to Peat’s Ferry. The first 13 miles of the event to the Yarramunda Bridge were through rapids.
He cut his times in the 1,000 and 10,000 metres down considerably at the 1956 championships held on Lake Ngambi, Victoria.
He made the Australian team for the Melbourne Olympic Games and it will be remembered that the Australian canoeists put up a good showing, making every final event in the kayaks.
Squash has been Max Baldwin’s latest sport. Again he was under the handicap of having only one hand to hold the small black ball and the racquet in serving. But he had learned his lesson playing tennis and it came a lot easier.
Even golf has not proved too tough a sport for Baldwin. He thinks nothing of walking over undulating ground, playing shots out of sandy bunkers over the long 18 holes.
Max Baldwin tells these stories because he is anxious to convince people with the same disability as himself that there is a place for them in sport. If they have any doubt he suggests that they come along and meet him. He will at least try to show them how.
Page 10 Network News – Issue 90 – June 2014 Polio NSW Inc
Reprinted from Post-Polio Health (formerly called Polio Network News) with permission of Post-Polio Health International (www.post-polio.org). Any further reproduction must have permission from copyright holder. Post-Polio Health, Vol. 29, No. 3, Summer 2013.
Question : I am 74 years old and had polio in 1954. My recent DEXA scan (to measure bone density) showed I had osteopenia. I have also recently suffered two compression fractures in my L1 and L2 vertebra due to an automobile accident in which I drove off the road over very bumpy terrain. My longtime physician, who is familiar with my PEG (feeding) tube, wants me to have bisphosphonate infusion. What is this and is it safe?
Dr Maynard: I invited Mary Eulberg, MD, Denver, Colorado, family physician and polio survivor, and Daria Trojan, MD, Montreal Neurological Institute, post-polio researcher and clinician to respond with me on your question. It is one that PHI receives regularly.
Dr Eulberg: As you may know from past issues of Post-Polio Health [See Calcium, Vitamin D and Bisphosphonates, Oh My! (Vol. 27, No. 3) and More Research About Bisphosphonate Treatment in Polio Survivors (Vol. 28, No 1)], there are some controversies about bisphosphonates (oral or injection/infusion). For you who uses a PEG tube the possibility of taking the bisphosphonate pills is not an option, and thus, the side effects of irritation to your esophagus or GI tract is eliminated.
The advantage of bisphosphonates is their ability to slow down or completely stop the process of bone becoming more brittle and decreasing the risk for fractures of vertebrae, of the hip and of the wrist. The risks are that some people have developed breakdown of bone in their jaw bones (osteonecrosis) especially after extractions or other dental work that involves the jaw bone (Routine fillings, cleaning, etc., do not cause this), or in some people an increased risk of spontaneous fracture of the femur (thigh bone). Therefore, if you have been advised to have any dental work done you should do it before starting the bisphosphonate.
It is now thought that people do not need to take a bisphosphonate for a lifetime. The current thinking is that a total of five years gives the best benefit with the least amount of risk.
Your insurance will likely need some extra documentation explaining why you can’t take the pills and why you need the more expensive injections or infusion. The criterion they use to approve intravenous bisphosphonates is usually a diagnosis of osteoporosis not osteopenia. But, they may decide you qualify because some experts say that a diagnosis of even a single vertebral fracture is sufficient to say a woman has osteoporosis. Osteoporosis means that the DEXA scan shows a T-score of -2.5 or greater, which means your bone is about half as dense as the bone of a normal 30-year-old. Osteopenia means that your bone is less dense than a normal young adult but not bad enough yet to qualify as osteoporosis.
Dr Trojan: With regard to the question about intravenous (IV) bisphosphonates in post- polio patients, we did not analyze data of patients treated with these medications in our published manuscript (Alvarez A et al. PMR 2010:2:1094-1103). See Post-Polio Health, More Research About Bisphosphonate Treatment in Polio Survivors (Vol. 28, No. 1). Outside of this group of patients, more recently, we have had a few patients treated with IV bisphosphonates and from our anecdotal experience with this very small number of patients, they seem to be well tolerated.
Polio NSW Inc Network News – Issue 90 – June 2014 Page 11 Dr Maynard: In this case, I think the dilemma is deciding if the vertebral compression fractures were a result of violent trauma, or if they were a result of osteoporosis weakening the vertebrae sufficiently that minor trauma resulted in their fracturing.
I would favour recommending treatment with vitamin D and calcium, and then a repeat of the bone scan in one year before initiating IV bisphosphonates now, because violent bouncing in a car can result in fractures regardless of bone scan scores.
Reprinted from Post-Polio Health (formerly called Polio Network News) with permission of Post-Polio Health International (www.post-polio.org). Any further reproduction must have permission from copyright holder. Post-Polio Health, Vol. 30, No. 1, Winter 2014.
Dr Rhoda Olkin is a Distinguished Professor of Clinical Psychology at the California School of Professional Psychology in San Francisco, as well as the Executive Director of the Institute on Disability and Health Psychology.
Question: Regarding the Promoting Positive Solutions column in the last issue of Post-Polio Health, Vol. 29, No. 4: I can identify with the person in the question. I also had polio as a teenager, and, like him, I am still on my own with assistance but concerned about what will happen to me if my situation worsens. I don’t think the columnists understand the problem. Loss of independence is a heavier problem than is reflected by their answers; they see this problem only on the surface. It is depressing to think about transitioning from being autonomous to depending on strangers as caregivers who then become dependent on you for their livelihood. If you are a polio survivor – you have the right to be depressed!
Response from Rhoda Olkin, PhD:
It is good to get feedback about a previous column. I am sorry my answer seemed too superficial. I can assure you I do understand the psycho-emotional turmoil that accompanies decreases in independence, as I too age with polio and find my abilities declining and my need for assistance increasing.
Let me address the two key aspects of your comments. The first aspect is about what you call “loss of independence.” Why put this is quotes? Because I want to reframe it. Having someone help you with tasks or even doing them for you is not the same thing as loss of independence. I have someone who does my laundry, changes the sheets, goes grocery shopping, vacuums, cleans, runs errands, changes light bulbs and scoops up the dead mice my cats bring me as gifts, but I still consider myself independent. That’s because I ask her to do those things, and because doing or not doing these tasks myself in no way defines who I am. Independence is not an either/or – either you have independence of you don’t – but a matter of degrees of independence.
As I notice changes in my functioning, I have to make adjustments. For example, I use a wheelchair more in the house than I used to, and walking the few steps from stove to sink with a pot full of boiling water and noodles became scary. So now I have a microwave container for making noodles that allows me to make them myself. Or sometimes I ask my assistant to make a big pot of noodles at the beginning of the week. But neither the change in how I do things nor the assistance in making noodles affects the essence of me: I am not defined by the noodles I make! But let’s think of a harder example: At one point I had to give up using woodworking tools, hence letting go of a major hobby of mine. Of course this was a harder adjustment than the noodle-making problem. I had to find different hobbies, and truthfully, the new hobbies were not as satisfying as woodworking, so Page 12 Network News – Issue 90 – June 2014 Polio NSW Inc this change required more personal readjustment than I would have wanted. Yes, I was sad, but not depressed.
Which brings me to the second point, about depression, and your assumptions: (a) that depression will accompany changes in independence, and (b) that polio survivors have a right to be depressed. I take issues with both of these points. And I say that as someone who has had more than my share of depression in my life. Depression is not a necessary or even usual response to changes in functioning. It should not be expected, it should not be thought of as typical, and it should be aggressively treated. Generally it is not the decrement in functioning per se that is the root of any depression, but the loss of socialization and activities that lead to depressed mood.
Longevity is most associated with continued socialization, so work on that aspect of life. And if living alone, I recommend cats – they don’t need walking, there are automatic feeders and litter boxes and they cuddle!
These articles were taken from the Spinal Cord Injuries Australia (SCIA) Accord magazine, Summer 2014. To get a copy of the publication, contact SCIA on 1800 819 775 or visit
Q: Is there a fee for loading a wheelchair user into a wheelchair accessible cab?
A: There is no separate fee for assisting a wheelchair-using passenger. In fact, the taxi meter shouldn’t be running while the vehicle is being prepared for the wheelchair-using passenger. However, it is common to find that drivers start their meters and then go about the task of removing seats to
free up the wheelchair space.
The driver of a booked taxi may engage the meter on arrival at the appointed time, not when they have arrived early for the booking. If the passenger comes to the taxi to find that it is not ready, he should instruct the drive to turn off the meter while it is being prepared. The same is true for a cab hailed from the street.
In NSW drivers already have a number of benefits for operating a wheelchair accessible taxi (WAT). These include an $8.47 bonus each time they transport a person who has an M50 (wheelchair-seated journey) Taxi Transport Subsidy Scheme voucher, and a massive reduction in the licence plate fee – $20 per week for a WAT compared to $700 for a regular taxi.
If you experience a driver attempting to demand an extra loading fee or other wrong charges, refuse to pay them and call the booking service (02 8332 0200 in NSW) to report the incident.
Advokit is a website developed by Disability Advocacy Network Australia Limited (DANA) to support advocacy for people with disabilities in connection with the National Disability Insurance Scheme (NDIS). Whether you are a person with a disability, a family member of an independent disability advocacy agency, it aims to inform you about the rights and entitlements of people with disabilities under the NDIS and about how to achieve support from the program. Go to
Polio NSW Inc Network News – Issue 90 – June 2014 Page 13
Joy McKean was born in 1930 and contracted polio in 1932. This article appeared in the Hunter Support Group Newsletter.
Posted Fri 24 Jan 2014, 4:54pm AEDT PHOTO: Joy McKean admires the 1957 version of herself and her late husband Slim Dusty. (AAP: Lukas Coch)
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The enduring legacy of Australian country music legend Slim Dusty is now set in bronze in Tamworth, the nation's country music capital.
The New South Wales Premier has officially unveiled a bronze sculpture depicting the late entertainer and his widow Joy McKean, as part of this year's Tamworth Country Music Festival.
The $180,000 artwork has been installed on Peel Street, known as the Boulevard of Dreams and the centre for buskers during the annual 10-day event.
McKean and the couple's two children, David and Anne Kirkpatrick, were also on hand along with fellow performer John Williamson, Tamworth Mayor Col Murray and the regions state MP Kevin Anderson.
McKean was overwhelmed at the public support that made the statue possible.
“So many people have been responsible for putting it here, for building it and everything, I think that’s what's marvellous to me ”, she said.
“Donations for this have come from everybody, from just the man on the street, anybody, through to government level, and that is amazing ”.
Slim Dusty, real name David Kirkpatrick, adopted his stage name at the age of 11 and released scores of albums in a prolific career spanning more than 60 years.
He died from cancer in September 2003 at the age of 76.
Sculptor Tanya Bartlett – who previously provided Tamworth with a statue of another late great country star, Smoky Dawson – spent months working on the piece.
Her work captures the power couple in their prime, around the time of the 1957 release of arguably Slim Dusty’s biggest hit, “A Pub With No Beer”.
Then Premier Barry O’Farrell told those gathered for the unveiling that the statue recognises the enormous contribution Slim Dusty and McKean made to Australia’s music heritage.
Page 14 Network News – Issue 90 – June 2014 Polio NSW Inc “Having a statue immortalising Australia's King of Country will no doubt become another drawcard for visitors to the area ”, Mr O’Farrell said.
“A monument to a decent couple who ... continue to contribute through their extended family, a monument to the country music that's helped shape generations of us who've lived in this country.
“But above all a monument to the stories they tell about ordinary Australians that have helped make this the best country in the world ”.
by Nola Buck, Co-editor
On Thursday, 8 th May, I set out for the St. Joseph’s Centre for Reflective Living. This Centre is not far from where I live and each time I visit it, I think of it as an oasis in the middle of suburbia. Its smooth expansive lawns, interspersed with trees, its beautiful gardens brightened by roses and tubs of Spanish Jasmine, could not help but lift the spirit, sharpen the mind and focus the body away from its deficiencies. It is an ideal venue for a Retreat concentrating on the Body, Mind and Spirit, especially the Spirit, as it is a former Convent of the Sisters of St. Joseph and reminders of their founder, St Mary of the Cross MacKillop (Australia’s first saint) are everywhere.
Sixty-one people, the majority of whom had contracted polio, were gathered to hear many speakers and engage in various activities. Some were Retreat Junkies, a title they have given themselves, as they have attended several Retreats, others were at their second retreat and others their first. Each person absorbed the Retreat in a different way, and this article will be how I absorbed the Retreat with information gleaned from others during the final session.
On Thursday afternoon, after getting our bearings (the building has many floors, passages, small rooms and comfortable bedrooms), we gathered for a meal. Later in the evening we were welcomed by Dr John Tierney, President of Polio Australia, Gillian Thomas, Vice President of Polio Australia and President of Polio NSW and Mary-Ann Liethof, National Program Manager, Polio Australia. Following the welcome each attendee introduced her/himself and spoke about what she/he expected from the Retreat. We then heard from Paul Galy, whom many of you may know as the maker of their shoes. Paul spoke about his book, “The 4 th of May”. This book was reviewed in Network News Issue 83, and it is a story of a family’s survival during a dark age of our history. Paul stated he felt so relieved after the events in his family’s life had poured from him in his writing but he felt strangely exposed in revealing so much of the family’s (and his) experiences.
At the Retreat, were John and Faye Powell from Mittagong. Faye had written a book, “Matthew Pearce and The Howlong Connection ”. John is a descendant of Matthew Pearce a pioneer of The Hills district and who once owned the land on which St. Joseph’s had been built. Matthew built Bella Vista a beautiful home maintained by Baulkham Hills Shire Council and also an oasis in a mixed residential and industrial area.
On Friday the hard work began, learning about the Healthy Body. As in each section of the Retreat, there was one plenary session at the beginning, “The Polio Body ”, presented by Dr Stephen de Graaff, Senior Rehabilitation Physician, Epworth Healthcare, Victoria. Dr de Graaff spoke on the initial polio infection and what occurred in the body, the advent of post- Polio NSW Inc Network News – Issue 90 – June 2014 Page 15 polio syndrome and the late effects of polio and the difference and the management of both. His talk will be on the Polio Australia Website, along with other Retreat presentations.
Following the Plenary session were concurrent sessions all based on the Polio Body. This was the format for the rest of the Retreat. Interspersed between sessions, were massage sessions, displays from the Independent Living Centre of NSW of assistive technology, AutoMobility, Barefoot Freedom Footwear and, of course, meals. The day concluded with a performance from the Circular Keys Chorus, proponents of the art-form of barbershop harmony.
Saturday, The Healthy Mind, commenced with a plenary session entitled, “ Healthy Brain Ageing ”, by Dr Loren Mowszowski, from the Brain and Mind Research Institute, the University of Sydney. This was one of the best sessions, probably because most of us could relate to it. She gave examples of incidents, losing our car keys and forgetting that word. She assured us that this is quite normal, because as the body ages, so does the brain, but it could also indicate something else is going on and to seek help if one is concerned about it. She gave us little exercises to illustrate her statements.
Again, there were sessions such as Seated Yoga, Early Polio Memories, Telling Your Story and a Family History Taster and many more with massages and consultations, interspersed between them. There was also a session for partners of a person who has had polio.
The day concluded with a visit from the Comedian, Tommy Dean. This was a very enjoyable segment of the Retreat, made more so because of a discussion as to whether Tommy had contracted Polio or Guillain Barre Syndrome as a child. After much discussion and advice to Tommy, we still don’t know what he contracted, but he is certainly one of us, he has a disability.
Sunday was the final day of the Retreat. The final day is always different, people are often sad to be leaving newly formed friends, they are hurrying to pack and get their bags away and they are distracted by the impending return to normality. “The Healthy Spirit ” is not an easy topic, but it was well illustrated by Sr Annie Bond, Centre Director, St Joseph’s, Baulkham Hills in her plenary session.
Sr Annie spoke of how the spirit is intangible but an integral part of the body. She spoke of how beauty takes a person beyond mundane things – that is spirit. She spoke of the joy when she returns to St. Joseph’s, the beauty of the place, and the spirits which have been here – the spirits of the pioneers and Religious.
The day concluded with a closing plenary where everyone spoke on what they had gained from the Retreat. To the first-timers, the knowledge they had gleaned from the various speakers and how that knowledge could assist them in managing their new symptoms was invaluable. To the Retreat Junkies and others there was always something new to learn, but also the making of new friends and renewing friendships was also of high importance.
We left on a high and looking forward to the next Retreat at Torquay, Victoria in 2015.
A note from the editor: Remember to visit the Polio NSW and Polio Australia websites for lots of useful information for members and health professionals and to view past seminar presentations.
Polio NSW:
Page 16 Network News – Issue 90 – June 2014 Polio NSW Inc . + . + . + . +
I think we are all aware of the great work that Gary and Barbara Fuller do to support our members by promoting Polio NSW Support Groups. Gary recently forwarded to me an email which follows; Gary stated: “When you get a letter like this it makes the job worthwhile. Neville comes from Cherry Tree Hill, near Inverell and has been a farmer all his life.”.
Neville Bryant is a 73 year old farmer who has “been through the pain barrier many times over the years since he contracted polio, just doing the things that he wanted to do in life – being a food producer, a farmer”. Neville is a member of Inverell Rotary and has been a guest speaker about his polio and his Torecent Gary experience. & Barbara Here Fuller is his email followed by stories written by Inverell Rotary Club members about Neville.
Hello to you both
It was such a nice surprise to receive your phone call of welcome to Polio NSW Inc, Gary.
I'm very much a bush boy and I guess that's partly the reason why I had never heard of Polio NSW until I got into real trouble last year. I spent two months in hospitals (Warialda--Tamworth-- John Hunter--Tamworth again) finally being discharged with papers marked "Diagnosis inconclusive". To shorten a long story my dear wife (a former RN) found you via the internet and we made contact. On receipt of the booklet on PPS all mystery vanished as it detailed my symptoms so accurately. In all the time in hospitals we could not find a single doctor prepared to even discuss the possibility that my problem may have in fact been the late effects of POLIO. I had been aware of this condition for many years but mistakenly believed it came back in about 30 or 40 years, I had 62 yrs. behind me.
Barbara, as a child you may have heard the name "Sister Kenny". I certainly did, as she had developed the best known methods of treating Polio children. Interestingly Sister Kenny was born in Warialda, about 50kms from us, but eventually went to USA and spent most of her life there. You can read about her if you google Sister Kenny. Also you can read a little of my polio related activities if you google Inverell Rotary and scroll down.
Thank you both for what you are doing and all the best with your efforts to have PPS introduced to medical students at Sydney University. The doctors and nurses that looked after me last year were truly wonderful and I would not have a derogatory word spoken about them, PPS was beyond their horizon.
Thank you again, and best wishes to you both.
Neville Bryant
{The journey I was on during those months I would wish upon no one. I was having blood tests (one sample even being sent to vet. lab. in Victoria looking for Ticklia disease, carried by ticks) taken repeatedly, X-rays, CT scans, all repeated several times searching for that elusive cancer, tumour, virus or whatever. I even had a camera down my throat, a bone marrow biopsy and a check on every organ in my body all with negative results. During all of this time I can only describe my condition as semi-conscious. I stand 186cm tall, do not carry excess weight but dropped to 70kgs in weight, looked like a POW and was anorexic. Words spoken directly to me would arouse me but mostly I was somewhere else. Words of significance to me would also arouse me. On one occasion for example a doctor said “whatever it is that is wrong with you, you may have to defeat yourself as we can't find what it is ”. Dorelle was able to tell me it was a doctor as I did not know who had said it. A lot of the anxiety, stress and worry for me and my family could have been avoided if PPS had been considered.}
Editor’s Comment: I think it is helpful to other polio survivors to see what can happen to them if we are NOT equipped with the necessary knowledge and information to help us take charge of our own health issues.
Polio NSW Inc Network News – Issue 90 – June 2014 Page 17 by Sue Moran Feb 20, 2014
Neville contracted Polio as a young boy. He has spoken to both the Sunrise group and the evening group about his experienc es when he developed the disease and then his terrible experiences last year with a mystery illness which he now believes was Post-Polio Syndrome .
The Rotary Foundations main focus is the eradication of Polio from the world. No- one would agree with this more than Neville who has experienced the long-term effects of this dreaded disease. Neville was fortunate that his treatment after contracting the disease included the ground-breaking work of Sister Elizabeth Kenny born in Warialda. This treatment stopped the paralysis of the muscles that is often a long-term effect of Polio. However, he has suffered from a weakening of his leg muscles and this has prevented him from participating in many of the sports that have so interested him all his life. Last year Nev ille contracted a terrible illness that caused him to spend many months in hospital. Doctors did test after test but could not make any satisfactory diagnosis except that it appeared to be some sort of auto-immune disease. Neville has done his own research and now feels sure that his illness was a result of what has been named Post-Polio Syndrome. Many doctors who have had no experience with Polio and its long-term effects do not recognise the symptoms. Even though Polio has effectively been eradicated from Australia because of a very effective vaccination programme there are still very many people in Australia around Neville's age and older who are Polio survivors and could be suffering as Neville has suffered. One thing Neville is sure about is that the so oner Polio is eradicated off the face of the earth the better and that is another reason to support Polio Plus. Sunrise group runs a very successful Polio Plus campaign
Sue Moran Dec 11, 2013
Decked out in their bright red End Polio Now t-shirts, members of the Sunrise group took to the streets of Inverell selling badges and cupcakes. They were very happy to raise around $670 for the fight against polio. They also gained publicity for the campaign through radio and newspaper. Neville Bryant, a member of Inverell Rotary and a polio survivor was a very interesting speaker when he spoke to the group about polio and his recent illness which was of post-polio syndrome.
Page 18 Network News – Issue 90 – June 2014 Polio NSW Inc
Reprinted from the Newsletter of IDEAS, March/April, 2014
With all the talk around making decisions and planning for your future, we thought we would take a closer look at planning in regards to your health.
Making decisions about your future health care is called advance care planning. It’s estimated that up to 50% of Australians will not be able to make or express their own decisions when they are near the end of their life.
So advanced care planning is a good way to make sure that your wishes around your health care treatment are known, documented and respected. It can help those closest to you to make health care decisions on your behalf if you became too unwell in the future to make decisions for yourself.
On the Advance Care Planning Website there are a series of steps you can go through to assist you in the process and include:
• Thinking about your past health experiences • Thinking about your current health and your future medical care • Planning your care (taking into account your individual situation) • Choosing someone to speak for you (your substitute decision maker) • Writing down your wishes • Informing others of your decisions • Regularly reviewing your Plan
There are also a number of videos you can watch to hear from people who have put a plan into place as well as information from health care professionals.
For Aboriginal and Torres Strait Islander people there is also a booklet called Taking Control of YOUR Health Journey available to download.
There are a number of fact sheets featured on the site which have been translated into a range of community languages. The website also has links to some great resources in each state of Australia as well as a number of publications for further reading on advance care planning. To find out more information you can visit:
Advance Care Planning Australia
Of course if you don’t have access to a computer and would like IDEAS to send you some of this information, then please give one of our Information Officers a call on 1800 029 904.
Polio NSW Inc Network News – Issue 90 – June 2014 Page 19
Reprinted from the Newsletter of IDEAS, March/April, 2014
Companion Card NSW has recently launched a new website. It features a search feature to find venues that accept the Companion Card as well as stories and how to apply for the program.
The Companion Card is a not-for-profit program, funded by the NSW Government and managed by National Disability Services. The Companion Card is also available in other States and Territories of Australia.
The card itself is the size of a credit card, with the name and a photo of the holder – who is the person with disability. When the holder buys a ticket for themselves at selected venues and facilities around NSW, their companion will get free entry.
A companion can be a partner, family member, friend, volunteer or paid carer.
Applying for a Companion Card
When applying for a Companion Card you will be assessed against the eligibility criteria. To be eligible you must:
• Be an Australian citizen or resident, and live in NSW; • Have a significant and permanent disability; • Need significant support with your mobility, communication, self-care and planning to get to most venues and take part in most activities in the community; • Not be able to get that support by using aids or other technologies; • Have a lifelong need for this type of support.
You must fill out a hard-copy (paper) application form and post it to the NSW Companion Card team at Companion Card.
You can get an application form by:
Phoning the Companion Card information line on Freecall 1800 893 044, emailing [email protected] or downloading and printing a form from the Companion Card website
You can also contact one of our Information Officers here at IDEAS and we will be happy to send one to you if you don’t have access to a computer. Call us on 1800 029 904 to get in touch.
Page 20 Network News – Issue 90 – June 2014 Polio NSW Inc
Reprinted from the Newsletter of IDEAS, March/April, 2014
There have been some changes made recently to the Australian Disability Parking Scheme around eligibility and contact details for applying for the permit, so we have gathered the details here for you.
NSW – Roads and Maritime Services (RMS) – 132 213 (General Customer Service)
Of Note: RMS is changing the way they print and issue photocards moving to a centralised card printing service. This means at certain locations, when you apply for or renew a mobility parking card, you won’t receive it on the spot – your card will be posted to you at no extra cost within five business days.
QLD – Department of Transport and Main Roads – 132 380 (Registration and Licensing)
VIC – VIC Roads – Contact your municipal councils
ACT – Road Transport Authority – 132 281 (Canberra Connect)
TAS – Transport Access Scheme – 1300 851 225
NT – Local Government Association – Contact NT Local Councils to apply
SA – Government of South Australia – 131 084 – Service SA Customer Service Centre
WA – ACROD Parking Program – 08 9242 5544
You can also visit the Australian Disability Parking Scheme website which has all the links for each state and territory. It gives you information on how to apply and application forms to download. Visit
Once you receive your disability parking permit you need to check the local rules for parking and obey all other road and parking conditions.
If you would like any further information on parking permits please give one of our Information Officers at IDEAS a call on 1800 029 904.
The Consumers Health Forum of Australia (CHF) is the peak organisation providing leadership in representing the interests of Australian healthcare consumers. CHF work to achieve safe, good quality, timely healthcare for all Australians, supported by the best health information and systems the country can afford. CHF member organisations reach Australian health consumers across a wide range of health interests and health system experiences. CHF media releases are available online at
Polio NSW Inc Network News – Issue 90 – June 2014 Page 21 Prescribing Pathway Welcomed by Consumers
CHF has welcomed the move of Health Ministers to approve the Health Professionals Prescribing Pathway (HPPP), which will deliver a national approach to safe, competent and consistent prescribing of medicines by health professionals other than doctors.
CHF has been working with Health Workforce Australia (HWA) since 2012 to support the development of the HPPP. CHF facilitated a consumer forum and workshop to HPPP in 2012. In 2013, and following additional consumer engagements and consultation, CHF was one of many stakeholders to provide a formal submission to HWA on HPPP.
CMF’s submission highlighted the need to be clear on the role the consumer would play in communicating with their provider about medications, and several of these recommendations are reflected in the final report.
CHF congratulates HWA on this important initiative. This will see a nationally consistent approved pathway that supports prescribing by health practitioners other than doctors. This will improve access to prescriptions for consumers in a way that maintains safety and quality. CHF will continue to support the implementation of HPPP.
The pathway and the accompanying report can be views at the HWA website
Changes Proposed to the TGA
Changes to the Therapeutic Good Administration (THA) have been proposed as part of the Therapeutic Goods Amendment Bill 2013, which amends the Therapeutic Good Act 1989. The Bill was introduced prior to the 2013 Federal Election and received bipartisan support.
The new Government has made some changes but will go ahead with legislative change in this area. The amended Bill aims to ensure consistent regulatory treatment of different types of therapeutic good and to streamline the operation of a number of provisions under the act. This will include giving the Minister the power to exclude goods from the scope of the regulatory scheme under the TGA – such as magnetic underlays and power bands. These products may then be regulated under consumer protection laws through the Australian Competition and Consumer Commission.
The Bill also gives powers to the Secretary of the Department of Health to remove certain items from the Australian Register of Therapeutic Goods (ARTG) if they are not therapeutic goods. There is currently no mechanism to remove these products from the ARTG.
The Bill also makes the provision of false or misleading information a new offence.
CHF is reviewing the Bill and investigating the impact it might have on medical devices and other therapeutic goods. CHF will provide a submission to the Bill’s exposure draft, which will draw on our previous calls for reform on the TGA.
AllTrials Campaign Gains Momentum
CHF has welcomed the introduction of laws to the European Parliament that would ensure that researchers running clinical trials must register them and publish summary results. This builds on the work of the AllTrials campaign, which CHF supports.
Representatives from every European Union member state have agreed with the draft Clinical Trials Regulation, and the agreement will soon be ratified by the European Parliament and the Council of Ministers.
CHF congratulates all involved with the campaign and looks forward to further progress on the AllTrials campaign internationally.
More information about the campaign can be found at
Northcott Building Ms Jenny Ly – Arthritis and Osteoporosis NSW Wednesday Mr Robert McLeod – Sydney Cochlear Implant Centre 23 July Fennell Street Emeritus Prof Barry Baker – Prof of Anaesthetics, Parramatta Sydney University – Full Seminar details on page 2
Gungahlin Lakes Country Seminar – Canberra Saturday Cnr Gundaroo and 18 October Gungahlin Drives Speakers and Topics TBA Nicholls ACT Further details in the next Network News
Saturday Burwood RSL Annual General Meeting th 29 November 96 Shaftesbury Road 25 Anniversary Lunch Burwood End-of-Year Seminar
Gillian Thomas President [email protected] 02 9663 2402 Susan Ellis Vice-President [email protected] 02 9487 3094 Merle Thompson Secretary [email protected] 02 4758 6637 Alan Cameron Treasurer [email protected] 0407 404 641 Committee Members (for contact details please ring or email the Network Office ): Charles Anderson, Anne Buchanan, Nola Buck, Barbara Fuller, Gary Fuller, Alice Smart and John Tierney
Office staff: George, Fatma. John 02 9890 0946 [email protected] Volunteers: Nola Buck 02 9890 0953 Anne O’Halloran Seminar Co-ordinator [email protected] 02 8084 8855 Alan Cameron Website Webmaster [email protected] 0407 404 641 Mary Westbrook Q’s about polio & PPS [email protected] 02 9890 0946 Nola Buck/Susan Ellis Co-editors Network News [email protected] 02 9890 0946
The Australian Polio Register was established by Polio Australia in October 2010 to gather information on the numbers of polio survivors living in Australia today, whether or not they contracted polio in this country. There are currently more than 2,000 polio survivors on the Register and this number increases daily. To make the Register truly reflective of the unmet need for polio services throughout Australia, all State polio networks are urging every Australian polio survivor to join the Register which is available on Polio Australia’s website at
Polio NSW Inc Network News – Issue 90 – June 2014 Page 23 Volume 4, Issue 1 Polio Oz News
M a r c h 2 0 1 4 — Autumn Edition
In Case of Emergency . . .
Last year I found myself in a polio self help groups have while continuing to inform his very vulnerable and frightening developed with short-hand partner that he was progressing situation. I was in the hospital essential post polio information well. His partner had been in great pain, minutes away to provide to doctors we are concerned about his health, from emergency surgery and being treated by. I have often raising the issue of post polio facing an anesthetist who, when wondered who will read such a but received continued asked by my husband and me card and under what reassurance until one day when to read a brochure prepared by circumstances. I have found it she was suddenly informed that Polio Services Victoria on the hard enough to discuss the post he was being rushed to the issues facing polio survivors and polio implications with doctors Intensive Care Unit. He died the respiratory issues, rolled her when I’m fully awake and alert next day and subsequently it eyes. as I have found that doctors are seems that the main factor was not always receptive. Will an undiagnosed respiratory How did we get to this anyone notice and pull this card condition. (See “Medical situation? As a young teenager I out of my wallet if I'm hurt in Misadventure” in Polio Oz News, was told by my physiotherapist, an accident and unconscious? Winter 2012.) Mrs Jocelyn Towns, that Or is it something that can only mainstream doctors were be useful if I can hand it over Subsequently that hospital did unlikely to know much about and explain? It is just not develop a protocol, a “clinical my condition so it would always reasonable to expect the patient alert” that will be attached to be up to me to educate them. I to take this much responsibility the file of any patient being accepted this as just another for educating doctors. admitted who identify that they hazard of having polio, which I Furthermore, even if I take this have a history of polio. This is a had contracted at 6 months. great step forward. It places a responsibility upon myself, it won’t be effective if medical responsibility for discussing the She was right. Much later it post polio issues on the hospital took many years for me to have staff are unaware of or not interested in the complex issues staff, rather than just relying on post polio syndrome diagnosed. the patient. The mainstream doctors rarely involved. asked about my (obvious) polio In 2011, I became aware of an So it is with this knowledge and and I was diagnosed with a unexpected, and poorly experience I attended this other variety of other conditions. It explained, death in a large hospital, fortunately with some was my own investigations that public hospital of a man with knowledge about my post polio led me to a doctor who is well post polio. Post Polio Victoria issues. I was a bit nervous but I acquainted with post polio, and Inc. an advocacy group with had my husband with me to back to the specialist polio which I am involved worked advocate on my behalf. service, much depleted in with his partner to follow up the Throughout the assessment in resources since I was a child case. A reason for his death was the Emergency Department, we talking to Mrs Jocelyn Towns. given as “post polio” and there ensured that each new nurse or doctor understood that I had Since being diagnosed with post seemed to be many unanswered questions, the main one being post polio. When faced with the polio syndrome, I have been reluctant anesthetist I felt provided with a wallet sized how did the hospital staff miss noticing his declining health, anxious and powerless. I was in “polio information card” that pain. Cont’d P 10
National Patron: Dr John Tierney, PhD, OAM Page 2
Polio Oz News
Polio Australia Inc From the Editor Representing polio survivors I have been (PHI) will be holding its 11th throughout Australia kept very busy International Conference from organising a Saturday 31 May to Tuesday 3 Suite 119C, 89 High Street bevy of amazing June in St Louis, Missouri, USA, in Kew Victoria 3101 s e s s i o n 2014. The theme of this PO Box 500 conference will be “Promoting Kew East Victoria 3102 presenters for Phone: +61 3 9016 7678 t h i s y e a r ’ s Healthy Ideas”. Check out the E-mail: [email protected] Health and conference Program here. Wellness Retreat Website: www.polioaustralia.org.au Post Polio Syndrome: A Condition (see pages 6/7), Without Boundaries is the 2nd Contacts Mary-ann Liethof as well as Editor European Polio Conference and will getting ready be held in Amsterdam from 25-27 President - John Tierney for Canberra (again) and putting June 2014. Anyone thinking of [email protected] together this edition of Polio Oz visiting Amsterdam should check News! There are always so many these “12 Wheelchair Accessible Vice President - Gillian Thomas articles that interest me - and I [email protected] Tips”. hope you’re finding them just as interesting . . . I intend to be regularly uploading Secretary - Jenny Jones information on my experience of [email protected] I am also getting ready to attend these conferences on Polio the two international Post Polio Australia’s website, so stay tuned! Treasurer - Brett Howard conferences coming up in May/ The cost of getting there is largely [email protected] June this year. I hope to be being supported by various presenting on how effective Polio fundraising efforts, for which I am National Program Manager Australia’s Retreats are in Mary-ann Liethof very grateful! increasing ’Health Literacy’. [email protected] Post-Polio Health International Onwards and upwards!
Letter to the Editor Inside this issue: Thank you for the article “The Christmas of 1951: A Polio Story” by Bill In Case of Emergency 1 Peacock, polio survivor, in your December newsletter. I found his story very interesting and something I can easily relate to, although with a Letter to the Editor 2 few tears in my eye. I too, got polio in 1951 at age 3 but I was hospitalised in the old Children’s Hospital at Camperdown in Sydney. I Rotary News 4 am now 65. Like Bill, I also remember the dedication of the nurses, 2014 Polio Retreat 6 the singing of Christmas carols, some children not making it etc. I still have vivid memories of it. But I ended up a lot luckier than most. Supporting Polio Australia 8 Although I have some muscle wastage in my legs, at least I can walk, LEoP Professional Training 9 unlike some polio sufferers. When I read Bill’s story it reminded me to get out a children’s book which was given to me by my infants teacher Polio Films 11 in 1953 when she came down to my parents house after school to read it to me. It still has her personal message to me written inside Extra Weight Fall Risk 12 the cover. As well as the dedicated nurses, she was a very dedicated HACC Services 14 teacher. Although I was out of hospital I still was unable to attend Elderly Patients: Wise 16 school at that stage. Out of all my childhood memories I cherish that Choices book more than any other possession. I often show friends the book as it means so much to me. My only regret in life is that I never tried Vitamin D Research 18 to make contact (I never knew how to) with the teacher (Miss Kay) when I became an adult, to show her I made it, as some thought I Coffee Research 20 wouldn’t. I would have loved to show her that I still had her book. And Polio Around the World 22 at my age now, I have no doubt left it too late. A big regret in my life. Once again thank you for the story which certainly brought back Polio This Week 25 memories (some good, some bad) for me.— Wayne Milford (NSW)
Unless otherwise stated, the articles in Polio Oz News may be reprinted provided that they are reproduced in full (including any references) and the author, the source and Polio Australia Inc are acknowledged in full. Articles may not be edited or summarised without the prior written approval of Polio Australia. The views expressed in this publication are not necessarily those of Polio Australia, and any products, services or treatments described are not necessarily endorsed or recommended by Polio Australia. Page 3
Polio Oz News
From the President
We are rapidly approaching Our work on re-establishing our historical links that time of year when Polio with Rotary continues. We now have an Australia holds its Annual expanding group of polio survivor speakers Health and Wellness garnering support from Rotarians for the Retreat. I would like to formation of a new partnership between Rotary particularly thank Mary-ann and Polio Australia's work in assisting polio Liethof for her tireless work survivors. I recently spoke to the Cessnock in yet again putting together Rotary Club in the NSW Hunter Valley. In the another world class following weekly club report the President David program. This year we are Clark wrote: "Wouldn't it be great if Rotary and holding the retreat in Polio Australia joined in a genuine partnership to Dr John Tierney Sydney in early May and the expand the already unparalleled Rotary story of President details are in the following eliminating polio throughout the world with the pages. I would really addition of closing the loop by helping the encourage you to go because in a relatively short many polio survivors?” period of time you will pick up so much about This is a splendid vision and I think that we have how to self-manage the LEoP condition. I have found a new catch cry! A complete report of been to all four retreats that have been held so David Clark's comments appear on page 4 in this far in Australia and every time I pick up new newsletter. At the national level, our consultant knowledge and strategies from professionals and Glenn Gardner AM, continues to nurture the joint peers to assist me with the management of my Rotary / Polio Australia joint Steering Committee polio body. set up by the Rotary Governor's Institute to The three musketeers of Canberra lobbying explore the establishment of a foundation for the (Gillian, Mary-ann & John) will be off to Canberra ongoing support of polio survivors. I hold great next week to heighten government and MP hopes for this new partnership. awareness of the LEoP condition and to continue our campaign for dedicated funds to assist polio survivors for our difficult life journey. Last year I John was told that we were on the incoming Health Dr John Tierney OAM Minister's wish list, but of course the Federal President and National Patron Budget conditions in 2014 are the toughest in Polio Australia decades. The centrepiece of our campaign will be the morning tea that we will be attending hosted by the Federal Parliamentary Friends of Polio Survivors. This will provide us with a platform for delivering our central message on the need for funding for targeted specific assistance programs for polio survivors.
At the function we will be presenting special plaques to our five (bipartisan) Parliamentary Patrons and providing them with an opportunity to speak. So far in the federal parliament over the last six years, sixty-one members and senators (25%+) have either joined our Parliamentary Friends of Polio Survivors group, or agreed to see us, or come along to one of our events or spoken in the Parliament about the needs of Australia’s 400,000 polio survivors. This is a far cry from when we first went to Canberra The original ‘Musketeers” in June 2009 with The Hon Peter in 2007, when one MP said to us, "Polio, didn't Dutton MP, then Shadow Minister for Health. we fix that fifty years ago?" L-R: Neil von Schill, Mary-ann Liethof, John Tierney, Gillian Thomas, Peter Dutton, and Peter Garde. Page 4
Volume 4, Issue 1
President’s Report (cont’d from p3)
Click on this link to see this edition of the Rotary Club of Cessnock newsletter. Page 5
Polio Oz News
Suzie’s Queensland Rotary Campaign
Still on the subject of Rotary talks, Queensland-based polio survivor, Suzanne MacKenzie, is running her very own “We’re Still Here!” fundraising campaign at Rotary Clubs up north. Sue’s goal is to raise $50,000 to support Polio Australia’s work, and she is already well on her way, having already raised a few thousand from the Rotary Clubs she has spoken to so far, which include:
Saturday 22nd February – Rotary Club of Cairns Tuesday 25th February – Rotary Club of Townsville South West Friday 28th February – Rotary Club of Cairns (mixed RC meeting) Wednesday 5 March – Rotary Club of Mareeba Friday 7th March – Rotary Club of Cairns Mulgrave Tuesday 11th March – Rotary Club of Townsville
Sue is enthusiastically sharing Polio Australia’s message that there are many thousands of polio survivors living in Australia who are missing out on appropriate health services and support due to a lack of informed health professionals, and there is no government, or any other regular funding provided to address this knowledge gap. With adequate funding, Polio Australia would not only run its current programs more efficiently in regards to community/patient education, it would also facilitate the development of a raft of other innovative programs to ensure Australia’s polio survivors are well supported. So good luck, Sue. Polio Australia is glad to have you on our ‘team’!
Rotary Clubs who would like to book a Speaker can contact Mary-ann on Ph: 03 9016 7678 or [email protected] and she will attempt to provide a link.
Suzie’s Story
My name is Suzanne MacKenzie. I contracted also falling over polio at age 2 in 1948. I missed a lot primary 50 or so years school as I had many operations to alleviate the after effects of polio on my right leg. My primary contracting school lunch hours were taken up with polio. We are physiotherapy. I had to wear a calliper until age no longer OK 13. By this time I found the extensive operations but we are still and physiotherapy were allowing me to lead a here and we do reasonably active but hardly ‘normal’ life. want to live as ‘normal’ a life I managed University Entrance and, spurred by as possible. my extensive experience in hospitals, I determined on a nursing career. My application From the was denied because of my disability. I was information devastated. I was, however, accepted to Teachers available, it College where I graduated. appears that Sue MacKenzie (right) accepting a very the parts of our generous cheque for Polio Australia from Fast forward to 2013 now aged 67. Married 46 bodies affected Denise Mitchell, President of the Mulgrave Rotary Club, Cairns years with 3 (married) children and 8 by polio after grandchildren. In the last 5 years I’ve been 50 years of hard work compensating for the having falls rather than just tripping. They effects of polio, are now are ageing at an happen out of nowhere, one minute I’m standing, accelerated pace, and struggling to cope. Many of next I’m on the ground. I had a particularly nasty us are also becoming increasingly more disabled. fall breaking an arm last year which kept me in hospital for a week. But now our cost of living is becoming higher with the need to access more health care, repair Overall I found medical professionals had little damage from falling, invest in expensive understanding of the late effects of polio. They footwear, limit physical activity (taxis instead of sent me to expensive podiatrists and walking), etc. And we, the survivors, medical physiotherapists who also have little professionals, and government need to know understanding of the late effects of polio. more about the late effects of polio, all of which Finally I found Polio Australia and discovered requires funding. We are still here and we do there were many other polio survivors who were need a hand! Page 6
Volume 4, Issue 1
2014 Polio Health and Wellness Retreat
Polio Australia ran its first Health and Wellness Retreat A Breath of Fresh Air: how to work with your respiratory in Baulkham Hills, New South Wales (2010), with a system to maximise speech and swallowing functions second in Mt Eliza, Victoria (2011), a third on the Pain and Fatigue Management Sunshine Coast, Queensland (2012), and the fourth in Glenelg, South Australia (2013). These were all based 2.00 to 3.30 pm on a Polio Retreat held by Post-Polio Health Osteopathic in Self Care International in Warm Springs, Georgia, USA (2009), Swollen Polio Legs which was attended by five Australians – four being Too Tired To Breathe? polio survivors. Managing Arthritis and Osteoporosis The Warm Springs Retreat focused on ‘Body, Mind, Partnering Polio Spirit’ and this theme has also proven to be a very effective framework for our Australian Retreats, as it 4.00 to 5.30 pm takes a holistic approach towards Chronic Condition Self Mindfulness: What Is It And How Can It Help Me? Management for polio survivors, their families and Pain and Fatigue Management (Repeat) carers. Avoiding Falls Nutrition Polio Australia’s Health and Wellness Retreat ‘open circle’ Question and Answer format is a valuable self- Taking Charge of Your Own Health management tool – especially the sharing of experience by the participants. The forums fully engage all Saturday participants in free-flowing discussion and information Plenary - Healthy Brain Ageing with Dr Loren Mowszowski exchange, resulting in a clearer understanding and better retention of the management strategies being Concurrent Sessions presented. 10.30 am to 12.00 pm The knowledge gained during these Retreats has not Seated Yoga only assisted participants to better manage their own Early Polio Memories condition, but is also being shared with their health Singing for Fun! professionals, thereby facilitating improved care for Mind Matters other patients presenting with the Late Effects of Polio.
This fifth Retreat is back where it all started, at the 2.00 to 330 pm peaceful sanctuary that is St Joseph’s Centre for Telling Your Story Reflective Living. It promises to build on previous A Family History Taster: Catching The Bug! sessions and participant feedback to present a range of Cryptic Crosswords self-management techniques which will enable Travelling Options for People Ageing with a Physical participants to achieve general wellbeing, as well as Disability providing options for people to remain as mobile and Partnering Polio independent as possible. 4.00 to 5.30 pm A summary of the days activities can be seen below, Card Making and a full Program and Presenters List is available here. Please note that this is still being finalised and some Making the Most of Our New Reality minor changes may be unavoidable. Laughter: The Best Medicine Bonsai Magic Thursday Registration and Welcome Dinner with Guest Speaker Sunday Paul Galy talking about his book “The 4th of May: The Plenary - The Healthy Spirit with Sister Annie Bond Memories of Paul Galy OAM” Concurrent Sessions Friday Plenary - The Polio Body with Dr Stephen de Graaff 10.30 to 12.00 Awakening the Creative Spirit Within Concurrent Sessions Philosophically Speaking Meditation 10.30 am to 12.00 pm Post Polio Exercise Options Functional Footwear Cont’d P 7 Page 7
Polio Oz News
2014 Polio Health and Wellness Retreat (cont’d from p6)
There will also be: displays from Barefoot Freedom - orthopaedic shoes Independent Living Centre NSW - aids and equipment AutoMobility - accessible vehicle options consultations and therapy treatments from 2010 Retreaters at Baulkham Hills Dr Steve de Graaff on self-management Dr Helen Mackie on lymphoedema To ensure that the Retreat environment is conducive to Carole Gridley and Aruna Ellis friendly networking, numbers have been restricted to 70 - massage therapy people. Preference will be given to New South Wales Rudo Makuyana - podiatry appointment residents and those interstate people who have not attended previous Retreats. This does not preclude Heena Raikar - hands/feet aromatherapy previous participants from registering and paying. and Bookings are only confirmed when payment is received entertainment from and places allocated. Once we reach capacity, people Circular Keys Chorus will be contacted and asked if they wish to be placed on Tommy Dean - Comedian a waiting list. If we exceed the quota, once places have been allocated, there will be an immediate refund of payment. Bookings are now open and Registration Forms containing all relevant information and contact details Note: this Retreat is a fully residential experience can be downloaded from Polio Australia’s website here. and there is no ‘day only’ option. Page 8
Volume 4, Issue 1
Supporting Polio Australia
Polio Australia would like to thank the following individuals and organisations for their generous support from 1 December 2013 to 28 February, 2014: Hall of Fame
Name Donation John Tierney $1,000
Total - $1,000 Significant Donations
Donation - General Anonymous Lions Club of Medowie J & H Raeburn B Bencina M & A O’Connor Prof D Small J Burn M Owens J Smith J Caldwell Dr G Parslow M Wilson Assoc Prof R Day G Pearson Dr J Feldman J Pickering Total - $2,242.10 Fundraising Campaigns
Name Donations - Walk With Me “Melbourne Meander” Team (Total) $5,144.15 “Parramatta Promenade” Team (Total) $8,165.00
$13,309.15
Name Donations - Rotary Rotary Club of Goodna (NSW) $1,000.00 Rotary Club of Williamtown (NSW) $200.00 Rotary Club of Kew (Vic) Bunnings Sausage Sizzle $1,200.00
$2,400.00
Become a Friend – Invest in Polio Australia and Make a Difference
Please invest in Polio Australia’s work to help ensure that all polio survivors in Australia have access to appropriate health care and the support required to maintain independence and make informed lifestyle choices.
Polio Australia is endorsed by the Australian Taxation Office as a Health Promotion Charity and a Deductible Gift Recipient making all Australian donations over $2 tax deductible. Polio Australia will issue an official receipt for all donations received.
Your Donation can be made via any of the following methods. Click here to see all the options.
Thank you for investing in us to make a difference – every donation helps polio survivors Page 9
Polio Oz News
“Understanding the Late Effects of Polio” Training
On the 20th of February this year, Polio Australia facilitated its first “Understanding the Late Effects of Polio” workshop for 23 health professionals at MS Australia’s training facility in Blackburn (Victoria). This three hour session was designed to explain the Late Effects of Polio (LEoP) and Post- Polio Syndrome (PPS) and to explore practical strategies to help post-polio clients to stabilise and improve their symptoms.
The session presenters were:
Dr Stephen de Graaff, Senior Rehabilitation Physician and Director of Pain Services, Epworth Healthcare Dr de Graaff has been diagnosing PPS and working with post-polio patients since 1995. He provided a general introduction to the Late Effects of Polio and Post-Polio Syndrome including symptoms, diagnosis, cause, incidence, treatment options and current research.
Louise Thomson, Senior Physiotherapist, NeuroMuscular-Orthotics Louise previously managed Polio Services Victoria at St Vincent’s Hospital, Melbourne, and continues to consult with post-polio clients at NeuroMuscular-Orthotics. She presented practical strategies used by physiotherapists, orthotists, and various other allied health professionals to address key concerns such as managing pain and fatigue, and help with stability and avoiding falls.
Natasha Layton, Occupational Therapist Natasha specialises in assistive technology and environmental interventions. She has worked with diverse populations in rehabilitation and community settings over the last 20 years. Natasha's research area is the use and outcomes of assistive technology and other enablers, and she works collaboratively with Victoria's Aids and Equipment Action Alliance conducting inclusive research in this field. The recent Equipping Inclusion Studies (Layton, Wilson, Colgan, Moodie and Carter 2010) included a number of individuals living with post-polio. Natasha previously worked with the Independent Living Centre and she took participants on a tour of the ILC to demonstrate AT that works for polio survivors.
Mary-ann Liethof, National Program Manager, Polio Australia Mary-ann has worked with the post-polio community since 2004 and currently facilitates annual Polio Health & Wellness Retreats for up to 70 polio survivors and their family member/carers in various states. She provided an overview of the role of Polio Australia, including support services available.
At the end of the workshop, participants were asked to complete an evaluation form. A summary of the responses follow: Professions represented were nearly half each physiotherapists and occupational therapists, with one nurse and a couple of case managers; The overwhelming response was positive to Polio Australia’s first PPS/LEoP training workshop, with all attendees saying they would recommend the session to other treating health professionals (THPs); Around 75% showed interest in being recognised as an informed/experienced LEoP and/or PPS practitioner; Virtually all attendees said that THPs need information on PPS/LEoP, and most said they would take follow-up action; All attendees said they could now better understand and recognise LEoP/PPS symptoms; Most participants said the session helped them to understand how LEoP/PPS exercise differed from neuro/ageing clients and provided polio management options; Three quarters of attendees said they now have better awareness of how Polio Australia supports polios/THPs.
Polio Australia is very encouraged by the level of interest and positive feedback provided by these health professionals. With adequate funding, training workshops like this could be promoted and delivered across Australia to ensure appropriate health services are provided for the thousands of polio survivors needing treatment and support. Page 10
Polio Oz News
In Case of Emergency (cont’d from p1)
I needed a good relationship with this person Australia, so the medical profession will be and the surgeon on the other side of the door. coming across this time and again.
After my husband said for a second time that we We seem to be in a situation where we are told are advised to provide this information and we to give information but then this is not listened would find it reassuring if she would just look at to. I think back to my conversations with Mrs it, she reluctantly agreed to glance at a second Jocelyn Towns and the other physiotherapists document we proffered (“Summary of who supported me through those years and I Anesthesia issues for the post polio patient” by wonder what she would say to me now. She Selma H. Calmes, MD, Chairman and Professor knew the limitations of the doctors but also the (retired), Department of Anesthesiology, Olive determination of the polio patients. I suspect View-UCLA Medical Center, Sylmar, California) she would suggest that we continue to carry the but dismissed the information as irrelevant in cards and brochures but that we should also this case. However, she did agree to send me for keep encouraging and expecting hospitals to recovery in Intensive Care for extra monitoring. take responsibility and develop sufficient Following the surgery, I recovered well for the knowledge and a process for treating people first few hours but then my condition who have had polio. Perhaps this will also deteriorated and I remained in the Intensive encourage doctors to be more receptive to the Care Unit longer than expected. I wanted to information we do provide. know why I felt so unwell. Could this be due to any post polio effects, I asked. I may be more sensitive to anesthesia drugs, to morphine and perhaps there are other central nervous system issues involved I explained. They did not know. I asked to have my blood gasses monitored, as I understood that this is best practice for post polio patients post operatively. More rolled eyes. I was aware that lying on my back, being administered oxygen and having difficulty coughing could be risk factors for raised carbon dioxide levels. This was not usual procedure and required some persuading. I was anxious to leave the ICU.
Had the staff read even the summary we gave of anesthesia issues they would have been alerted to the difficulty some post polio patients have post operatively and we could have discussed this. I don’t know if that is what was happening in my case but it would have been a useful and reassuring conversation to be having at the time, as they seemed to have no other explanation for my post operative response. I was very ill, reliant on their care and in no position to be researching anything. The lack of Liz Telford knowledge of post polio, the lack of - now and then receptiveness to receiving information from either my husband or me and the lack of communication made this a more stressful experience than it needed to be.
There is evidence that post polio impacts on people who have had non paralytic as well as paralytic polio and the numbers of both are unknown but thought to be up to 400,000 in Page 11
Volume 4, Issue 1
Polio Battle Sparked Robert Redford’s Jonas Salk Film
Robert Redford's childhood brush with polio inspired him to direct a movie about a building named after vaccine inventor Jonas Salk. Source: www.express.co.uk—12 February 2014
The Hollywood veteran has stepped behind the camera to take charge of a short 3D documentary which is part of a six-part series about iconic buildings called Cathedrals of Culture.
Redford's installment focuses on the Salk Institute for Biological Studies in San Diego, California, which was founded in 1960 by Jonas Salk, the scientist who developed the first polio vaccine, and Redford admits his own struggle with the disease, aged 11, inspired him to tackle the project.
He says, "From a personal standpoint I knew something about the building because I grew up in Los Angeles not far from that area... so I was around when that building was being built. Also, I was around when the polio epidemic was still a threat. You could get it. I had a mild case of it myself when I was 11 years old, and fortunately it was mild enough not to cause me any real damage. Polio was part of the picture, so when Jonas Salk invented the vaccine, it was just earth-shattering news."
The Unusual Story of Tanaquil Le Clercq, Artist and Muse
by Stephen Holden “Resurgence”, commissioned for a March of Source: The New York Times - 4 February 2014 Dimes benefit. Wearing a black cape, Balanchine himself played the Threat of Polio. Many years As you watch grainy kinescope footage of dancers later, he worried that somehow he had brought in a mirrored studio executing a pas de deux in on the disease. the documentary biography “Afternoon of a Faun: Tanaquil Le Clercq”, it is almost as though you are Le Clercq became ill during the 1956 European beholding mythological deities who have alighted tour of New York City Ballet, Balanchine’s briefly on the earth. Here today, gone tomorrow, company. Although most of the dancers had been they are like rare birds, seldom glimpsed, who given the polio vaccine before the trip, Le Clercq remind us of the evanescence of all things, most decided at the last minute to wait. She collapsed of all physical beauty and the casual grace of while in Copenhagen, was confined to an iron youth. Therein lies a primal attraction of ballet: its lung and spent several months in a Danish evocation of the ecstatic moment is as fleeting as hospital. it is haunting. She never walked or In this sequence, which opens and closes this film danced by Nancy Buirski, Le Clercq and her noble, bare- again. chested partner Jacques d’Amboise dance to the Balanchine Debussy tone poem “Prelude to the Afternoon of a did Faun”, as choreographed by Jerome Robbins. everything Because Le Clercq, one of the great ballerinas of in his the 20th century and a muse to Robbins and power to George Balanchine, was struck by polio at 27, that help foreknowledge lends this sequence and another restore her from “La Valse,” which ends in a ballerina’s death, agility, to a tragically prophetic resonance. no avail.
When Le Clercq was 15 and one of the brightest Read full lights at Balanchine’s School of American Ballet, article she danced the role of a girl with polio in his here. Page 12
Volume 4, Issue 1
Extra Weight May Add to Elderly Fall Risk
I went to where the grownups go by Shereen Jegtvig 19 February 2014 by Peter Willcocks Jan 2014 Source: Australian and New Zealand Journal of Public Health 2014 I went to where the grownups go today. NEW YORK (Reuters Health) - For Australians over and no one held my hand. age 65 included in a new study, being obese raised I was quite in charge the risk of experiencing a fall by 31%. and it wasn’t at all scary. "Falls are one of the most common causes of injury for older individuals and as the world population It was just like it used to be. ages, the number of fall-related injuries are projected No one to tell me where to go to increase rapidly," said lead author Rebecca Mitchell. or to watch out for this and that. "Likewise, rates of overweight and obesity among older individuals are also increasing," added Mitchell, I never heard that question once a researcher with Neuroscience Research Australia Are you alright? at the University of New South Wales.
Are you sure? Mitchell and her colleagues wanted to determine Do you need to rest? whether overweight and obesity added to the risk of Please sit down, for a while falling among older adults, as well as the risk of being injured in a fall. I’ll find you a seat. The researchers used information from the New Well, South Wales Prevention Baseline Survey, a large Australian population study started in 2009. I went out to where the grownups go, to- day, A total of 5,681 people 65 years of age and older were asked about their history of falling, their to a market full of clothes, food, cobble perception of their own risk of falling, their general stones and smelly stuff. health status, medication use and activity levels. Lots of things to trip over and bash into, Participants who had fallen one or more times in the I went right into the crush of things. previous 12 months as a result of accidentally losing I had so much fun their balance, tripping or slipping were also asked dodging between how many of those falls resulted in injury and how many required medical attention or led to hospital and around. admission.
I felt just like a According to the results published in the Australian and New Zealand Journal of Public Health, 23% of grownup today, healthy-weight respondents had fallen once during an independent one, the previous 12 months and 34% had fallen more than once. in my new power About 30% of obese respondents fell once and wheel another 45% fell more than once, making the overall fall risk 31% higher in the obese group. chair. The obese participants who fell didn't have any higher risk of fall-related injuries compared to healthy- weight people who fell, but they were more likely to have other health conditions - such as heart disease, diabetes and high blood pressure - and to report being in moderate or extreme discomfort.
Those who were obese and fell were also more likely to be taking four or more prescription medications.
"It is difficult to know for certain why the risk of falling
Cont’d P 13 Page 13
Polio Oz News
Extra Weight May Add to Elderly Fall Risk (cont’d from p12) increases for obese individuals, but it is likely to be as a Brangman, who is Chief of Geriatrics at SUNY Upstate result of reduced peripheral sensation, general physical University Hospital in Syracuse, New York, and a past weakness and instability when standing or walking," president of the American Geriatric Society (AGS), was Mitchell said. not involved in the new study.
There are a number of common risk factors that can "We know that when people fall, the biggest problem increase any older person's risk of falling, she added. afterwards is a fear of falling because then they move less or when they walk they hold themselves really rigid "These can include individual factors such as: poor and tight which actually increases the risk for falling," health, instability when standing or walking, some health Brangman said. conditions, such as poor vision or dementia, lack of physical activity, use of multiple medications that can The American Geriatric Society published fall prevention affect balance, and a poor diet," Mitchell said. guidelines for physicians in 2012, she noted. Though they are intended for doctors, some of the suggestions Risks can also be in an older person's environment, may help families assess the risk in their homes (see: including "uneven or slippery floors, unsecured floor http://bit.ly/1cWjB86). coverings, such as rugs, inappropriate footwear or eyewear, or inadequate lighting," she said. According to the U.S. Centers for Disease Control and Prevention, about one of every three Americans over "As to why fall-related injuries do not increase for obese age 65 suffers a fall, and every year 2 million of those individuals this is likely to be as a result of adipose tissue falls result in emergency room visits. (fat) protecting bone," Mitchell said. The AGS guidelines were intended to encourage Compared to the healthy-weight group, the obese healthcare providers to ask about falls, according to participants in the study were more likely to be sedentary Brangman, "because a lot of times it's not asked and for eight or more hours a day, to walk less, to have patients don't volunteer it because they don't want problems walking and to believe that nothing could be anyone to know. They're so afraid that will mean they done to prevent falls. need to be placed in long-term care or something."
Mitchell and her colleagues point out that obesity is Brangman said that sometimes patients who are associated with a higher risk of certain chronic illnesses, overweight might need a little extra support to realize but also that chronic conditions such as lung disease that their situation isn't hopeless and that there are and arthritis can limit activity, leading to weight gain. things they can do, such as starting an exercise To reduce the risk of falls among obese older people, program. tailored activity programs, such as strength and balance Strengthening the quadriceps muscle group is especially training, as well as home safety assessments and recommended. "Exercise programs that are tailored to eyesight checks could all be of benefit, they write. the individual can make a difference, and it's really never "Everybody knows how falls can be life-changers for too late to start doing something," Brangman said. older people, from breaking a hip to hitting your head, so "Balance and strengthening exercises, especially if we can prevent them that's always better and there's a exercises that strengthen the quads, are very important lot that can be done," Dr Sharon Brangman told Reuters in preventing falls in the future." Health. Page 14
Polio Oz News
Commonwealth Home And Community Care (HACC)
Source: The Department of Health Who can access Commonwealth HACC services?
Commonwealth HACC services are available to people: aged 65 years and over (or 50 and over for Aboriginal and Torres Strait Islander people), in all states and territories (except Victoria and Western Australia - see additional information below), who are at risk of premature or inappropriate admission to long term residential care, and carers of older Australians eligible for services under the Commonwealth HACC Program.
The Commonwealth HACC Program arrangements do not apply to Victoria and Western Australia, where HACC services continue to be delivered as a jointly funded Commonwealth-State program which provides services to older people and younger people with disabilities. The Australian Government and the Victorian and Western Australian State Governments maintain bilateral agreements for that purpose.
Did you know that the Commonwealth HACC More detailed information is available on the Program provides services that support older Commonwealth HACC services webpage or people to stay at home and be more independent to find out about services in your area phone in the community? 1800 200 422.
The Commonwealth HACC Program provides 19 Contact details for information about HACC basic maintenance, support and care services to services in Victoria and Western Australia are as assist people to remain in the community. follows:
The services focus on supporting different areas of Victoria need that an individual may have due to a Department of Health Victoria Switchboard limitation in their ability to undertake tasks of Telephone: 1300 253 942 daily living and include: Email: Enquiries ([email protected]) nursing care allied health services like podiatry, Western Australia physiotherapy and speech pathology Home and Community Care in Western domestic assistance, including help with Australia cleaning, washing and shopping Telephone: (08) 9222 4222 personal care, such as help with bathing, Email: HACC WA ([email protected]) dressing, grooming and eating social support Increased Payments for Carers home maintenance From 1 January 2014 the rate of payment for home modifications those who receive a Carer Allowance increased assistance with food preparation in the home by $2.80 a fortnight - in line with the CPI - lifting delivery of meals the basic rate of payment to $118.20 a fortnight transport (see table on page 15). assessment, client care coordination and case management If you are a polio survivor, or live with/care for counselling, information and advocacy services someone who is, and are not currently receiving centre-based day care any Benefits or Payments, check your eligibility support for carers including respite services here. Page 15
Volume 4, Issue 1
H A C C ( c o n t ’ d )
Source: Department of Social Security
Risking Exposure by Jeanne Moran
Munich, 1938. Nazi Germany. War is on the horizon. The law makes fourteen-year old Sophie Adler a member of Hitler Youth; her talent makes her an amateur photographer.
Then she contracts polio. During her long hospitalization, her Youth leader supplies her with film. Photographs she takes of fellow polio patients are turned into propaganda, mocking people with disabilities. Sophie is now an outsider, a target of Nazi scorn and possible persecution. Her only weapon is her camera.
Will she find the courage to separate from the crowd, photograph the full truth, and risk exposure?
Purchase online at Amazon. Page 16
Polio Oz News
Elderly Patients: Making Wise Choices by Laurie Scudder, DNP, NP, effects of medications; we think a lot about the Paul L. Mulhausen, MD, MHS safety of procedures, because our clientele is Source: Medscape – 27 February 2014 predictably more vulnerable to those problems.
The Choosing Wisely® initiative of the American All of the Choosing Wisely committee members Board of Internal Medicine (ABIM) Foundation was had an interest in advising people to use less launched in 2012 with a goal of reducing overuse medication. There is clear evidence of of tests and procedures, and helping patients, in undertreatment or overtreatment, and consultation with physicians, to make smart and duplication in treatment, as well as a trend effective care choices. Since then, 30 professional toward an increased risk for adverse effects from societies have joined the effort, releasing lists of medical interventions. common practices that should be questioned by both healthcare professionals and patients. The committee felt strongly that the standard of care should be that medications and other This month, the American Geriatrics Society treatments are reconciled periodically, and those (AGS) released their second "Top 5" list of low- that are no longer necessary, have no indication, value practices in the care of older adults. or are duplicated should be reviewed for Medscape spoke with Paul Mulhausen, MD, MHS, discontinuation. How to identify that? The AGS Chief Medical Officer at Telligen and Chair of the Beers Criteria for potentially inappropriate AGS Choosing Wisely workgroup, about the medications provides a strategy to make sure recommendations and key take-home messages that the treatment program is truly necessary for clinicians. and truly effective, and not duplicative.
Recommendation 4: Don't prescribe a The other part of that process is to look for medication without conducting a drug regimen undertreated indications. So you were right: This review. is a complex recommendation. It's rooted in our belief that treatment regimens can be both The rationale: Older patients use more helpful and harmful and that we truly need to prescription and nonprescription drugs than other proactively manage the medication treatment populations. This increase in medication burden - regimens of the geriatric patient, because the particularly concerning when high-risk and payback for that proactive management is so potentially additive medications are used - may much greater. lead to diminished adherence; adverse drug reactions; and increased risk for cognitive Medscape: In your experience, are most impairment, falls, and functional decline. clinicians familiar with the Beers criteria? Medication review identifies high-risk medications, drug interactions, and those continued beyond Dr. Mulhausen: I do not think they are their indication. universally known, although they are widely used in the geriatric and long-term care communities, Medscape: This recommendation is really a as a quality benchmark. Certainly, there are mouthful! The risks of polypharmacy are well more people in the primary care disciplines who documented, but clear strategies for are probably aware of it, but I don't think it's the deprescribing are lacking. What do you majority. recommend as best practice for both reviewing medication and possibly This is anecdotal, but in a presentation recently, discontinuing those that are no longer I polled the audience of maybe 100 people to ask appropriate? about their use of this document, and approximately 5 raised their hands to say they Dr. Mulhausen: There are several issues here. If were familiar with the Beers criteria. I don't think you work in the domain of geriatric care or they're broadly known. immerse yourself in the geriatric literature, you become very aware of the unintended adverse Some clinicians feel that the Beers criteria consequences of treatment. Older people who are overstate risk in identifying potentially losing homeostatic reserve become more inappropriate medications. I don't. I am very vulnerable to the adverse effects of medical comfortable with the list and believe it has been intervention. We (as geriatricians, and all of those developed and vetted in a rigorous process. I who treat older adults) think a lot about side think there is continued value in promoting the Cont’d P 17 Page 17
Volume 4, Issue 1
Elderly Patients: Making Wise Choices (cont’d from p16)
Beers list as a potentially helpful tool.
Other Recommendations:
Recommendation 1: Don't prescribe cholinesterase inhibitors for dementia without periodic assessment for perceived cognitive benefits and adverse gastrointestinal effects.
The rationale: Although some patients with mild -to-moderate and moderate-to-severe Alzheimer disease (AD) achieve modest benefits with use of cholinesterase inhibitors, including delayed cognitive and functional decline and decreased neuropsychiatric symptoms, the impact of these drugs on institutionalization, quality of life, and caregiver burden are less well established. Treatment plans must also include advanced care planning, patient and family education, diet and exercise, and other nonpharmacologic approaches.
Recommendation 2: Don't recommend screening for breast or colorectal cancer, or prostate cancer (with the prostate-specific antigen [PSA] test), without considering life expectancy and the risks of testing, overdiagnosis, and overtreatment.
The rationale: Cancer screening is associated with a number of risks, including the risk for overdiagnosis and unnecessary treatment. The number needed to screen and treat in order to prevent a single death is over 1000 for both breast and prostate cancer in elderly adults. Studies of cannabinoids, dietary polyunsaturated Medscape: This recommendation is not fatty acids (DHA and EPA), thalidomide, and discouraging screening all older adults for anabolic steroids have not demonstrated the breast, colorectal, or prostate cancer - but efficacy or safety of these agents for weight gain rather, only those with a life expectancy of in elderly adults. less than 10 years. Recommendation 5: Avoid physical restraints Recommendation 3: Avoid using prescription to manage behavioral symptoms of hospitalized appetite stimulants or high-calorie supplements older adults with delirium. for treatment of anorexia or cachexia in older The rationale: Physical restraints can lead to adults. Instead, optimize social supports, provide serious injury or death and may worsen agitation feeding assistance, and clarify patient goals and and delirium. Effective alternatives include expectations. strategies to prevent and treat delirium, The rationale: Although high-calorie identification and management of conditions supplements increase weight in older people, causing patient discomfort, environmental there is no evidence that they affect other modifications to promote orientation and important clinical outcomes, such as quality of effective sleep/wake cycles, frequent family life, mood, functional status, or survival. contact, and supportive interaction with staff. Stimulants such as megestrol acetate and Physical restraints should only be used as a very cyproheptadine should be avoided in older last resort and should be discontinued at the adults, as noted in the 2012 AGS Beers criteria. earliest possible time.
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Polio Oz News
Lack of Vitamin D Linked to Inflammation by Marlene Busko Source: Medscape – 27 February 2014
COLERAINE, UK — Older, healthy individuals who were deficient in 25-hydroxy vitamin D (vitamin D) tended to have higher levels of biomarkers linked with cardiovascular disease (CVD) and inflammatory conditions such as multiple sclerosis and rheumatoid arthritis, in an observational study . More specifically, individuals who had a vitamin-D deficiency had significantly higher levels of interleukin-6 (IL-6) and C-reactive protein (CRP) and higher IL-6:IL-10 and CRP:IL-10 ratios, compared with their peers who were not deficient.
This is the first study to demonstrate that vitamin-D status is linked with markers of inflammation in a population of independently living, older adults and the first to investigate the link between vitamin D and inflammatory ratios, which may be more reliable measures of inflammation, Dr Mary Ward (University of Ulster, Coleraine, United Kingdom) advised in an email.
"The results suggest that older adults with a deficiency in vitamin D may be at risk of having a more proinflammatory immune profile . . . which in itself may be a risk factor for [acute or] chronic disease development, [including] CVD, osteoporosis, and cognitive dysfunction," she said. "However, further research needs to be undertaken in order to confirm these findings."
"I think all of us now think that inflammation is a critical factor in a lot of disease . . . so there's some rationale for thinking about trying to reduce chronic inflammation with something as simple as vitamin D, and it may have a further effect on atherosclerotic risk of cardiovascular disease," Dr Clifford J Rosen (Tufts University School of Medicine, Boston, MA), an author of the Endocrine Society's scientific statement on nonskeletal effects of vitamin D, commented.
Strengths of the study by Ward and colleagues include that they looked at “an older [population] with a good cross section of values for [vitamin D], and the deficiencies [were] really deficient; less than 25 nmol/L, which is less than 10 ng/mL, is really low, and those people [generally] have other comorbid conditions," Rosen added.
However, "until we do randomized trials, these observational studies really don't provide us with much insight," he cautioned. The Vitamin D and Omega-3 Trial (VITAL), a randomized clinical trial of 20 000 men and women, which is looking at hard outcomes and expected to be completed in June 2016, should provide a clearer picture of the role for vitamin D and omega-3 supplements in preventing cancer and CVD, he noted.
The study was published online February 25, 2014 in the Journal of Clinical Endocrinology and Metabolism.
Trials Unlikely to Support Vitamin D Supplementation
by Marlene Busko "The take-away message is that there is little Source: Medscape - 24 January 2014 justification currently for prescribing vitamin D to prevent heart attack, stroke, cancer, or fractures A new meta-analysis of trials of vitamin D in otherwise-healthy people living in the supplements for the prevention of myocardial community," lead author Mark Bolland, PhD, from infarction (MI), stroke, cancer, or hip fracture in the University of Auckland, New Zealand, told seniors finds that, in general, taking vitamin D Medscape Medical News in an email. does not lower the incidence of these outcomes. Moreover, in a sequential meta-analysis, the "In our paper, the only benefit from vitamin D researchers showed that any future clinical trials was in reducing hip-fracture risk in elderly would also likely find that vitamin D supplements women living in residential care; in those 2 would not reduce the incidence of these studies, the vitamin D supplements were given outcomes by 15% or more. with calcium, at a dose of 800 IU/day, and higher doses are probably not necessary. In terms of It was unclear whether taking vitamin D harm, there was uncertainty as to whether supplements with or without calcium might vitamin D without calcium might increase the risk reduce the risk for death by 5%, however. of hip fracture," he noted. Cont’d P 19 Page 19
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Vitamin D Supplementation (cont’d from p18)
One possible exception is people who truly have "The findings [of no benefit] will probably come very low levels of vitamin D, who may benefit as no surprise to people who have held skeptical from supplements, he said. "For people at risk of views about the effectiveness of vitamin D osteomalacia because of very low vitamin D supplementation," Dr Bolland speculated. "On levels — frail elderly people living in residential the other hand, people who have endorsed calls care, people who actively avoid the sun, and for widespread vitamin D supplementation will people with deeply pigmented skin — it is worth probably view these results as surprising." considering taking vitamin D supplements." However, "For other people, vitamin D In a review published in the Lancet by the same supplements are unnecessary," he stressed. New Zealand research group last October (Lancet. 2014;383: 146-155), vitamin D The study was published online January 24 in supplements had no meaningful effect on bone Lancet Diabetes & Endocrinology. In an density, "and this taken together with the current accompanying editorial, Karl Michaëlsson, MD, findings that vitamin D supplements do not from Uppsala University, Sweden, says the prevent fracture suggests that they don't have a finding by Dr Bolland and colleagues that future role in preventing osteoporosis," Dr Bolland studies are not likely to change the added. recommendation that most people will not benefit from vitamin D supplements is "of Use Supplements for True Insufficiency particular interest." In his accompanying editorial, Dr Michaëlsson says a massive demand now exists for the Do Vitamin-D Supplements Help, Harm, or measurement of blood concentrations of 25- Have Null Effects? hydroxyvitamin D, and supplemental use of A deficiency in vitamin D has been linked to vitamin D in the past decade has soared. For fractures, ischemic heart disease, example, in the United States during the period cerebrovascular disease, and cancer, yet taking from 2002 to 2011, sales of vitamin D vitamin D supplements remains controversial, supplements increased more than 10-fold, from "probably because the evidence from randomized $42 million to $605 million. clinical trials has been fairly weak," Dr Bolland surmised. "A few trials have showed positive But he cautions that while several researchers effects of vitamin D supplements on various have claimed that higher doses of vitamin D are outcomes, but most show no effect, and a few needed to have a positive effect on health, high have shown increased risk of fracture." annual doses of vitamin D increase the risk for fractures and falls. "Without stringent indications In the new paper, the researchers examined — ie, supplementing those without true meta-analyses of studies looking at vitamin D insufficiency — there is a legitimate fear that supplements and MI, stroke, cancer, fractures, vitamin D supplementation might actually cause and mortality. Then they did a sequential net harm." analysis to see whether the risk estimates would be altered by future trials. They obtained data The finding by Dr Bolland and team that the "the from 44 reports of 40 individual randomized body of evidence is already sufficiently large" so controlled trials. The vitamin D doses in the that future trials will not change the conclusion supplements ranged from 200 to 1100 IU/day, or that vitamin D is not of use in most people is the most pertinent, Dr Michaëlsson stresses. 100,000 to 150,000 IU every 3 months.
In 23 of the 32 trials (73%) that reported For his part, Dr Bolland concludes, "Until more baseline 25-hydroxyvitamin-D levels, the information is available, it would be prudent to average baseline level was less than 50 nmol/L, choose a cautious approach to vitamin D "which is widely considered to be normal, supplementation and to put more emphasis on although some people think higher levels, eg, the development of evidence-based cutoff points from higher than 75 to 80 nmol/L, are normal," for vitamin D inadequacy." Dr Bolland explained. In most studies, among participants who took the supplements, 25- The study was funded by the Health Research hydroxyvitamin-D levels increased to normal Council of New Zealand. The authors have reported no relevant financial relationships. levels. The study participants were typically women in their 70s or 80s, and most trials lasted Lancet Diabetes Endocrinol 2014. Published longer than a year. online January 24, 2014. Abstract Editorial
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Polio Oz News
Good News For Coffee Drinkers
Coffee Consumption, the Metabolic increases in anti- Syndrome and Non-alcoholic Fatty Liver inflammatory interleukins. Disease Epidemiologic and clinical by Yesil A, Yilmaz Y studies demonstrated a Source: Medscape - 6 January 2014 significant inverse association between coffee Coffee consumption is a part of daily life in most consumption and areas of the world. As such, a number of studies prevalence of metabolic syndrome, as well as a have evaluated the chemical composition and reduced risk for NAFLD. related effects that this enjoyable beverage may have on health and disease. The meta-analysis by Bravi and colleagues is a logical extension of the data demonstrating the For many years, healthcare providers have beneficial effects of coffee on NAFLD, now advised patients to avoid excessive consumption showing a reduction in associated risk for because of a concern about caffeine dependence. hepatocellular carcinoma (HCC). Sixteen studies Several recent studies, however, suggest that were identified. Overall, compared with no coffee regular coffee consumption may modulate the consumption, the risk for HCC was reduced by risk for fibrosis in chronic liver disease. 28% with low-level consumption, and by 36% Yesil and Yilmaz analyzed the experimental, with high-level consumption (3 or more cups/ epidemiologic, and clinical studies and the day). It is likely that this favorable effect is the modulation of the metabolic syndrome and result of reduced cirrhosis evident in coffee nonalcoholic fatty liver disease (NAFLD). Animal drinkers, as well as improvement in the studies showed a reduction in the metabolic metabolic syndrome, because diabetes is another syndrome with improvements in glycemic and known risk factor for HCC. The researchers lipid regulation, as well as reductions in adjusted for other major risk factors for HCC, transaminases and proinflammatory cytokine including hepatitis B virus, hepatitis C virus, hepatic gene expression. Other studies showed cirrhosis, alcohol use, and tobacco use. reductions in hepatic fat and collagen proinflammatory tumor necrosis factor, as well as Aliment Pharmacol Ther. 2013;38:1038-1044
The Daily Living Expo
In 2014, ATSA will hold a Daily Living Expo at the Melbourne Showgrounds on Wednesday 14 May and Thursday 15 May, from 9am-4pm. There is plenty of parking onsite and easy access via public transport.
The exhibition will have over 100 exhibitors displaying a wide range of products and services for people with disability and the elderly. On display will be the latest in assistive technology, mobility solutions, pressure care, employment support, accessible recreation/holiday ideas, modified motor vehicles and a lot more.
A key feature of the Expo is the FREE Clinical Education Program – run over 2 days in rooms conveniently located next to the exhibition floor. The three track seminar program has over 20 speakers.
Admission is free to therapists, the general public, end users and ATSA members for both events. Page 21
Polio Oz News
I s P o l i o - like Symptoms Cause For Alarm? by Dina Fine Maron Acute flaccid paralysis, that’s acute paralysis of Source: Scientific America – 25 February 2014 | parts of the body–in this case the limbs, can result from a variety of viruses including polio A U.S. Centers for Disease Control and virus and non-polio enteroviruses including Prevention expert sheds light on five cases enterovirus 68, West Nile Disease, echovirus and of children infected with an unidentified adenoviruses. Most people who get enteroviruses virus have mild symptoms and no testing is ever done on them. I think we’re looking at a rare outcome Just sixty years ago polio was one of the most in these children. dreaded childhood diseases in the U.S. Vaccination campaigns effectively stamped out Are we seeing these symptoms in places domestic cases of the disease, with the last other than California? cases of naturally occurring paralytic polio in the Acute flaccid paralysis is not a nationally U.S. in 1979. But news that a small number of notifiable disease in this country so we’re really children have developed polio-like symptoms in not able to assess the significance of this number California has fueled instant public interest and of cases. Our understanding is that what concern. Keith Van Haren, a pediatric neurologist happened here is these cases came from people at Stanford University, said in a report released that came in at first for testing of polio virus, or February 23 that five children between August at least some of them did. That’s great. We don’t 2012 and July 2013 had developed paralysis want physicians to forget about polio virus and reminiscent of polio. they need to keep testing for it and be alert for it because polio could come from parts of the world The children had previously been vaccinated where polio is endemic. against polio virus. And although the children were afflicted with paralysis and severe In countries that are performing regular weakness, physicians have concluded the surveillance there is at least one case of acute children do not have polio. Still, none of the flaccid paralysis per year for every 100,000 children fully recovered limb function after six people under 15 years old. We don’t have that months. The jury is still out on exactly what same system in place here but if we did the caused their condition. Van Haren’s findings will same numbers would apply. We would expect at be presented at the American Academy of least 80 cases of acute flaccid paralysis - at least Neurology’s annual conference in April. - from California since they have a population of Physicians and public health officials have children under 15 of eight million. So, again, if submitted 20 reports to the California we were conducting surveillance for acute flaccid Department of Public Health of similar cases. paralysis we would expect at least 80 cases. Thus far, the CDPH has not identified any common causes that suggest the cases are So then are you saying this is expected or linked. we should not be concerned? These researchers only report on five cases in Polio virus is part of a larger family of the abstract, two of which tested positive for enteroviruses, and the different types each carry enterovirus 68. Based on that we are not unduly a small degree of paralysis risk. Two of the alarmed. We are in touch with California but not children did test positive for one type of rare have been in touch with the researchers at enterovirus, enterovirus 68. More common Stanford that put the abstract together. enteroviruses, however, are associated with respiratory conditions including pneumonia. Have there been other cases where Scientific American spoke with CDC's Deputy enterovirus 68 causes paralysis? Director of the Division of Viral Diseases Jane CDC tracks enteroviruses that circulate around Seward to get further insights. the country using a passive reporting system from labs that happen to test for those viruses. [An abridged transcript of the interview follows.] That gives us no idea about the total numbers. It These children did not test positive for just tells us which viruses are circulating from polio, but two of the children did test year to year. We have had at least one reported positive for a different kind of enterovirus, case [of paralysis] as you can see in a Morbidity enterovirus 68. What’s your theory for and Mortality Weekly Report from 2006. This is what’s going on here? just the absolute tip of the iceberg of what may
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Polio Oz News
I s P o l i o - like Symptoms Cause For Alarm? (cont’d from p21 be occurring around the country though, as well or they got an unusually high dose of the because the reports don’t reflect the total virus, it’s hard to say. numbers in the country. We don’t have total surveillance. We are aware of 47 cases of How do we test for enteroviruses to identify enterovirus 68 since 2000. Those are just the them? ones we know have been isolated in laboratories It’s usually on the stool or through cerebral spinal and most were respiratory disease. fluid testing. It’s better to get it out of the CSF because these viruses are common so if you pick Other than polio, would enterovirus 68 or up the virus from a nonsterile site like the throat any other enteroviruses be more likely to or stool that may not tell you the child has it since cause paralysis? healthy carriers could still shed the virus. No, they are not commonly known to cause paralysis. The most important thing to know is How are enteroviruses other than polio that enteroviruses are common and most transmitted? Is this an issue where you people don’t get very sick from them. It’s only spread the virus through poor hygiene after rare that these cause severe illness. With any interacting with feces? case of paralysis a clinician should consider if Definitely a lot of them are transmitted via it’s polio virus and request testing for that. respiratory secretions, especially this one– enterovirus 68, which is commonly associated So what would spark an enterovirus to with respiratory disease. cause paralysis when that’s such a rare symptom? So what can people do to protect themselves It’s probably a combination of how the host from this unidentified illness? interacts with the virus. If you think about a The best way to protect yourself is if you have any condition like chicken pox it used to infect respiratory symptoms to practice cough etiquette basically every single child in the U.S. With four and cover your cough, or your sneeze. You should million cases a year a hundred kids died. Why wash your hands often and stay home if you’re did those kids die? It’s really hard to explain. sick. It’s an interaction of the virus and the host. Either genetically they didn’t cope with the virus Page 23
Polio Oz News
India Celebrates
India celebrates polio success, but sad sought blessings from a priest for a cure so that I legacy remains could walk properly." Source: The Economic Times - 10 January 2014 The priest's prophecy that he would be cured of his problems by the age of 20 gave false hope. The contagious virus, once it attacks the nervous system, wreaks irreversible damage.
Estimates for the number of survivors left crippled in the country vary significantly.
In the absence of any official data, most experts agree it runs into several million given the history of the disease in India which affected up to 300,000 people each year before vaccinations began in the 1970s.
Even up to the mid-1990s, when eradication efforts began gaining momentum, 50,000- 150,000 new cases were occurring annually, according to estimates from the World Health Organisation. NEW DELHI: Teenage shoe-shiner Amit contracted polio as a toddler, leaving him with "I am one of the happiest people that new cases damaged legs and a twisted spine. He has never are not being seen," said Mathew Varghese, one seen a doctor and the country's eradication of of India's leading polio surgeons who has been the disease came too late for him. operating at New Delhi's St Stephen's hospital since 1987. On Monday, India will mark three years since its last polio case, leaving it on the cusp of being "Today we don't have a single one - that is a declared free of the ancient scourge in what is huge achievement - but having said that there is arguably its, and one of the world's, biggest also a backlog of cases which needs to be health success stories. planned for," he said at his polio ward, one of the country's only such facilities. But the wretched sight of crippled street hawkers or beggars on trolleys, withered legs tucked "These children who are stigmatised, hobbling or underneath their bodies, will remain as a legacy crawling or with crutches in their homes and of the infections that took hold during the villages, need to be brought to the mainstream." country's time as an epicentre of the disease. Rather than young children, many of the patients Amit, who uses only one name, was sent out to he now sees are in their teens or older, whose work aged nine to help clear his family's debt muscles have wasted away and joints have and has squatted on a pavement outside a busy locked due to constant sitting. restaurant serving south Indian food for the past five years. "They'll be here for another 30 or 40 years," he said. His operations involve inserting multiple He says he was about three or four when he pins into the affected legs, which are then put found suddenly that he was unable to sit up under gentle but constant tension to stretch out straight on a family trip and he toppled off his the muscles and bones until the limb is straight. mother's lap while travelling on a bus. It is a long and painful process, requiring up to "When we reached home, I still could not sit four months of hospitalisation and many more of properly. Every time I would try to sit, I would physiotherapy, which St Stephens offers for free. keep tipping over and that's when my mother At the end, the fortunate are able to walk, often thought I've got polio," he told AFP in between with the use of callipers. serving customers. But as a result of shifting priorities, "the new "My parents never took me to a doctor, they took surgeons which are coming out have no skills in me to a temple instead, offered prayers and doing polio surgeries", Varghese said.
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India Celebrates (cont’d from p23)
Deepak Kapur from the Rotary charity, which 13, 2011, marked the last reported case when an funded the polio vaccination programme 18-month-old girl in a Kolkata slum was found to alongside the Indian government, UN children's be infected. agency UNICEF and the Gates Foundation, estimates there are three to four million Indians India was taken off a list compiled by the World left crippled by the disease. Health Organisation (WHO) of countries where polio is considered endemic, leaving just "We would encourage people all across the Pakistan, Afghanistan and Nigeria. country and all across the world to look after the polio survivors because it is not an easy job for Now, three years since the last infection, India them," he said. "They all need the facilities to will be certified by the WHO as having eradicated lead a dignified life." the disease once all records are checked around the country. For understandable reasons, the focus of India's fight against polio has so far been on ending new This announcement is expected some time in cases, something for years thought impossible in February or March. For Amit though, the future a vast country with poor sanitation. holds more labour shining shoes on the tough streets of the capital. While it was stamped out in Western nations more than 30 years ago, the highly contagious "I had thought about studying, but my parents virus which spreads through faecal matter broke had to pay off debts that came from temple out annually in India and was carried to other visits, prayers, ceremonies and various offerings for my treatment," he said. countries by migrants.
But after billions of dollars and private and public "I don't like this work anymore. I used to like it investment in a vaccination programme, January initially, but now I don't like it so much. I want to learn how to read and write."
Travellers Require Vaccination
Travellers to and from 7 polio-affected would be certified as polio-free. countries will require vaccination Source: NetIndian News Network - 3 March 2014 However, the risk of polio persists as Afghanistan, Pakistan and Nigeria continue to be India has decided that, as a preventive measure polio-endemic, re-infecting six countries in 2013 to stop the polio virus from coming into the and causing major polio outbreaks in the Horn of Africa region and the Middle East. country, all travellers from and to seven polio- affected countries would be required to take the Read full article here. oral polio vaccine (OPV).
The seven countries are Afghanistan, Ethiopia, Syria, Kenya, Somalia, Nigeria and Pakistan.
All travellers coming from these countries to India would need to take OPV six weeks before departure from their country. Polio vaccine will also be administered to all travellers from India to these polio-affected countries.
The new polio vaccination regime has come into effect from 1st March, 2014, an official press release said.
India has not reported any case of polio for more than three years. In the next step, India, along with the remaining countries of the World Health Organisation's (WHO) South-East Asia region Page 25
Polio Oz News
Polio This Week
Source: Polio Global Eradication Initiative - as of Wednesday 5 March 2014
Wild Poliovirus (WPV) Cases
Total cases Year-to-date 2014 Year-to-date 2013 Total in 2013
Globally 28 9 406
- in endemic countries 28 9 160
- in non-endemic countries 0 0 246
Case Breakdown by Country
Year-to-date 2014 Year-to-date 2013 Date of Countries Total in most WPV1 WPV3 W1W3 Total WPV1 WPV3 W1W3 Total 2013 recent case
Pakistan 24 24 5 5 93 14-Feb-14
Afghanistan 3 3 1 1 14 31-Jan-14
Nigeria 1 1 3 3 53 01-Feb-14
Cameroon 0 0 4 30-Oct-13
Somalia 0 0 194 20-Dec-13
Syria 0 0 25 17-Dec-13
Ethiopia 0 0 9 5-Nov-13
Kenya 0 0 14 14-Jul-13
Total 28 0 0 28 5 0 9 406 Total in endemic 28 0 0 28 5 0 9 160 countries Total out- 0 0 0 0 0 0 0 0 246 break
Data in WHO as of 05 March 2013 for 2013 data and 04 March 2014 for 2014 data.
On 27 February, the world’s leading Islamic scholars, led by the Grand Imam of the Holy Mosque of Mecca, stated that protection against diseases is obligatory and admissible under Islamic Shariah, and that any actions which do not support these preventive measures and cause harm to humanity are un -Islamic. The scholars adopted a strong ‘Jeddah Declaration’ and a focused six-month Plan of Action to address critical challenges facing polio eradication efforts in the few remaining polio-endemic parts of the Islamic world: a ban on vaccinations and lack of access to children in some areas, deadly at- tacks on health workers, and misconceptions by communities about mass vaccination campaigns. More.