Volume 2, Issue 3 Polio Oz News
September 2012 — Spring Edition
Sleep At Last by Peter Willcocks (Victoria) Life before CPAP was an exhausting my CPAP and from overnight sleep August 2012 time and at first I did not realise studies. that my poor health was due to the By 2009 I was struggling again with “I can’t breathe! I have only been later effects of polio. Fortunately I discovered Dr Stephen de Graaff energy, being tired for much of the in bed for an hour or so. I roll over. time. A very good friend ours, Jill I listen to the continuous pressure and his wonderful team of physios, Pickering, referred me to an article of air swirling around my mask, my speech therapists, OT’s and a in a polio newsletter on the use of mouth, and somewhere down my psychologist who struggled to get Bi-PAP (Bi-Level Positive Air throat. I gasp for air, I swallow, my me to slow down. The hospital Pressure) machines for polio folk. Bi mask leaks. I am so tried, I am so where Steve was at the time did not have an in-house sleep clinic so -PAP machines utilise two levels of sore. My arms ache, my chest is positive air pressure; the first to heavy, my legs twitch and cramp. I the sleep stuff was contracted out. provide a larger breath than the am exhausted. I choke, I splutter, I weakened muscles can take in, and can’t breathe. All I can hear is the the second, a much lower air continuous pressure of air forcing pressure to allow the person to its way from my mask. I feel a flat breath out normally. It seemed like pain across my chest. I should be using a Bi-PAP. OK, new
I sit up, remove my mask and take respiratory doctor, new hospital. a deep breath in and out, in and Everything will be sorted – ha! out. I am groggy with sleep – but During my first appointment I too tired to lie down again and face suggested that perhaps my CPAP that machine. I sit up for an hour or was not doing what it could for me. so, try to read, have a cup of tea, Let’s run some tests. Over the next and watch another 3am repeat of three years I had five overnight the Leyland Brothers outback sleep studies, six or seven hour adventures. By 4.30am I am strong long exhausting breath strength enough to lie down and listen to the tests, regular blood tests to check pump press air into me.” Well that for CO2, changed to four different was the way it was until a couple of types of masks, and privately months ago. trialled two slightly more flexible
In 2005 I first started using a CPAP CPAP machines that had some (Continuous Positive Airway variable pressure. In 2011, in a Pressure) machine for sleep desperate effort to help, a friend apnoea. The first few months were gave me their older style great and I got about six hours of Respironics M series CPAP that had good sleep every night. No longer The hospital that I chose from C-Flex which follows breathing was I awoken by a jolt of adrenalin Steve’s list had a clinic run by patterns and provided some relief kick starting my breathing. This jolt ResMed technicians. All good, but from the continuous air pressure. of the body being kick started is not to get a referral to a respiratory The respiratory specialist at only painful and exhausting but it is doctor you had to do it via them. hospital didn’t think the benefits also very frightening. I often dozed The technicians at that hospital from the Respironics M series while watching TV only to be knew little of the later effects of machine would be that different sparked awake with pain, to sit up polio and the respiratory doctor from my existing ResMed CPAP but to take a deep breath and then I that I saw seemed more fascinated felt C-Flex was worth trying. It was would desperately try not to fall with polio than informed. They better than my old CPAP but as the back to sleep. relied heavily upon readings from Cont’d P 3
National Patron: Dr John Tierney, PhD, OAM Page 2
Polio Oz News
Polio Australia Inc Welcome from the President
Representing polio survivors 21 August, led as usual by our generated a flurry of media throughout Australia hard-working Patron, John reports. Tierney.
Suite 119C, 89 High Street We are now looking forward to We met with the Managers of Kew Victoria 3101 the next Canberra foray on 31 the two Flexible Funds that we October for our “We’re Still PO Box 500 had unsuccessfully applied to Here!” campaign, accompanied Kew East Victoria 3102 for funding (the outcome by many of you – you can Phone: +61 3 9016 7678 being that while our make a difference so we hope applications were sound there E-mail: [email protected] you will join us (see page 8). is never enough money). We Website: www.polioaustralia.org.au Mary-ann is off to Italy for a also met with a number of key well-deserved break but will be
parliamentarians, and were back at work at the beginning Contacts Gillian Thomas privileged to be given time of October to keep this President once again to address the campaign rolling along. House Standing Committee on President - Gillian Thomas Since the last issue Health and Ageing. While we In the meantime, please sponsor [email protected] of Polio Oz News we were in Canberra the a walker in Polio Australia’s first have been busy in Committee’s Discussion Paper Walk With Me fundraiser in Vice President - Arthur Dobson Canberra again, was debated in the House of Melbourne on Sunday, 9 [email protected] with two days Representatives. To our September (see page 4) - we have set an ambitious target and lobbying on 20 and delight this exposure need your help to achieve it. Secretary - Tessa Jupp [email protected] From the Editor Treasurer - Neil von Schill Firstly, please accept my from childhood polio led to [email protected] apologies if this Spring a lifelong passion for music Edition of “Polio Oz News” and dance; John retiring National Program Manager is a little less packed than from the world of finance to Mary-ann Liethof usual. My excuse is that I take up art; and how [email protected] am just about to head off Pakistani polio survivor to Italy for the month of Mudassar Baig dreams of September and, as always, winning a medal at the there are so many things London Paralympics. Inside this issue: to do before I go! Although the weather is slightly less So this Spring edition is Sleep At Last 1 Mary-ann Liethof frigid than it has been in really a celebration of the fulfilling and often amazing Jetstar Appeal 3 Editor Melbourne of late, it’s still lives of Australia’s (and the Unless otherwise cold—so the warmth of Walk With Me 4 northern climes is calling world’s) polio survivors. It stated, the articles in is all of you who provide NDIS Forum Your Say 4 Polio Oz News may be me loud and clear. the ongoing inspiration to The Dragonfly 5 reprinted provided that they are However, I know you will those of us at Polio Dream and Do! 5 reproduced in full find the stories included in Australia to keep fighting (including any this edition to be an the good fight to ensure The Indomitable Mrs P 6 references) and the interesting read. People that there are proper “We’re Still Here” Campaign 8 author, the source and are so interesting, aren't services made available so Polio Australia Inc are they? Every day I feel that people living with the Polio Legacy Still With Aust 9 acknowledged in full. privileged to hear about Late Effects of Polio can Medicare Local Alliance 9 Articles may not be what people have and are continue living their lives to edited or summarised still achieving in their the full! Personally Controlled 10 without the prior l i v e s — often whilst Electronic Health Records written approval of Now, I’m off to catch a Polio Australia. The enduring considerable plane! Triclosan Warning 10 views expressed in this physical duress. publication are not A Journey With Polio 11 necessarily those of You will read about Peter’s Polio Australia, and search to find a respirator Spring is God's “Touched By Polio” Exhibit 12 any products, services that actually works for way of saying, or treatments 2013 Retreat—SA 13 him; Roger and the fun described are not he’s having with his “One more time!” Polio This Week 14 necessarily endorsed Dragonfly handcycle; how or recommended by “Mrs P’s” rehabilitation ~ Robert Orben Paralympics News 15 Polio Australia. Page 3
Volume 2, Issue 3
Sleep At Last (Cont’d from P1) months passed my breathing sit up and take deep breaths…”. N o t e s softened to the extent that the air Two days later I began a trialling a just swirled around the top of my ResMed VPAP III with full Bi-level Hypoventilation: Generally, in lungs leaving all the bad air (CO2) Positive Air Pressure. people with neuromuscular to mix with my blood. Again I disorders who are having I am now into my second month of awoke feeling like someone had breathing problems, the main sleep filled nights. Occasionally I poured poison into my veins. I problem is hypoventilation tease my Bi-PAP and stop breathing needed to get up, move around, (underventilation) - not breathing but I am quickly kick started with a take deep breaths, only then would deeply and/or often enough. puff of air with the pressure quickly the pain and the toxic taste Muscle weakness, scoliosis and/or deceased to allow me to breath out decrease. chest wall stiffness make it before the next puff starts. The Bi- difficult or impossible to fully About 12 months ago I received PAP that I have is armed with a inflate the lungs. Hypoventilation advice from a senior clinician from siren that wakes the dead if there is results in an imbalance in the the Victorian Respiratory Support an air leak or if the cat carbon dioxide (CO ) and oxygen Service to talk to my sleep inadvertently decides my time is up 2 CO exchange in the blood; too specialist about Hypoventilation. and wacks the power plug from the 2 much CO is retained, too little O2 Yeah, right, like I am a doctor and I wall. 2 is taken in. Because can talk their language. I gave it hypoventilation usually first occurs my best and received an answer My brain is alive again and I can during sleep and because several something along the line of “Yes and want to do more stuff. But of the signs and symptoms you do indeed have a reduced even better I no longer overlap, it can be misdiagnosed as ability to breath out but there is begrudgingly take strong pain relief obstructive sleep apnoea (OSA). very little evidence of from Tramadol supported by hypoventilation from your current Endone two or three times a week Source: Rancho Los Amigos Post- tests, we will run some more and just to get by. I now get sleep and Polio Support Group article by see what the results suggest.” my muscles get the rest that they have for so long sought and I no Judith R. Fischer, MSLS, Editor, More tests and more lying awake at longer feel like my veins have been Ventilator-Assisted Living with night as I listened to the air swirl topped up with their nightly dose of thanks to Josh Benditt, MD, around my mask, my mouth, and poison (CO2)) University of Washington, Seattle; somewhere down my throat and Peter Gay, MD, Mayo Clinic; Diana then about 2 months ago… Solving sleep problems is not Guth, RRT, Home Respiratory “Perhaps we need to try something always straight forward and I have Care, Los Angeles; E.A. different. It is very difficult to been fortunate to have had great Oppenheimer, MD, (retired) Los support from my respiratory monitor CO2 levels in your blood Angeles; and Jesper Qvist, MD, during normal home sleep patterns. specialists. I suggest if you are Respiratory Centre East, You say you wake up at night and struggling don’t give up, have Copenhagen, Denmark the only way you can breathe is to another chat to your specialists and work together to find a solution.
Woman in Wheelchair Loses Jetstar Appeal
by Jamelle Wells, Court Reporter Source: ABC News, August 23, 2012
A 78-year-old woman has lost her appeal against a ruling that Jetstar did not have to let her on a flight because she was in a wheelchair.
Sheila King, who had polio as a child and was also injured in a car crash, booked her Jetstar flight between Adelaide and Brisbane online in August 2008.
The airline contacted her and said she would not be able to fly that day because there were already two passengers on her flight who needed wheelchair assistance.
Ms King tried to sue the airline claiming she was discriminated against. But in January this year a court ruled against her, noting that she failed to select wheelchairs on a special section of the website and that Jetstar offered her another flight that she refused to take.
The Federal Court in Sydney today dismissed Ms King's appeal against the January judgment. Page 4
Polio Oz News
Walk With Me
the general public with the Australia have access to opportunity to ‘walk’ side by side in appropriate health care and the a non competitive, lively, fun and support required to maintain very public environment. independence and make informed lifestyle choices. The difference we can make together About Ability First Funds raised for Walk With Me will Ability First Australia is a national be used by Polio Australia to pay for body of leading disability much needed program organisations working to achieve a development including annual Polio fair go for Australians living with a Health and Wellness Retreats, disability. Seven members of AFA Regular Polio-Related Publications, were established from the 1920’s Clinical Practice Modules, onwards to support children living Community Education, and with physical disabilities. The “polio Polio Australia is delighted Systemic Advocacy. kids”, now grown up, are to be joining in with Scope’s represented through Polio Australia. Walk With Me event in Ways people can help marvellous Melbourne on Join our walk – register to get About Walk With Me Sunday, 9th September 2012 involved with this inclusive Walk With Me is a national event - bringing together people of community activity organised in conjunction with Ability all abilities to ‘walk’ along Create your own fundraising First Australia, a registered charity the scenic Yarra River. team – when you register, there and national body representing is an option to be a team captain eight leading Australian disability Registration is from 9:00am so that others can join your organisations working to achieve a with the ‘walk’ set to start at fundraising team fair go for Australians living with a 11:00am. Length of the ‘walk’ is Sponsor a walker! - choose disability. 2km or 4km. who you would like to support – donations are tax deductible and About Walk With Me can be made online. "Walk With Me" is an event conducted nationally through Ability Simply go to Polio Australia’s First Australia’s eight member Walk With Me web page and organisations, of which Polio follow the prompts! Australia is one. The focus of the walk is to raise awareness and About Polio Australia celebrate inclusion of people living Polio Australia is a national not-for- with disability, as well as raising profit community based much needed funds. organisation that represents tens of It is not a fun run, nor a thousands of Polio Survivors living competitive fitness event but a in Australia today. We strive to recreational walk, providing family, ensure all polio survivors in friends, colleagues and members of
N D I S F o r u m — Y o u r S a y
Source: NDIS Website
A National Disability Insurance Scheme will transform the way disability services are delivered in Australia, it will take a lifelong approach to providing care and support.
The Australian Government has established the NDIS Advisory Group to help steer the development of the scheme and ensure people with disability are involved in the design. Over the next few months, the NDIS Advi- sory Group will be asking design questions about the scheme and seeking your feedback.
You have a forum to present your views on design elements of the scheme and there’s also space for you to share your stories and experiences. Your views and opinions will be critical in helping to deliver the first stage of an NDIS.
Get involved and help us transform the way disability care and support is provided in Australia. This is your NDIS – your say. Page 5
Volume 2, Issue 3
The Dragonfly by Roger Beale (ACT)
For the last few months I have been enjoying using a Dragonfly Handcycle attachment for one of my wheelchairs. It is an 8 speed handcycle which clips onto the wheelchair to turn it into a hand powered trike.
On flat terrain it will get up to about 12-15kmh and it is excellent aerobic exercise without the impact on rotator cuffs and carpal tunnel that using the wheelchair has. I find I can comfortably ride for an hour without too much difficulty.
On the flat you go faster than most middle aged or less fit joggers - I really only get passed by the ‘professional’ men and women runners (the lycra-wearers with clear ability and fitness).
It is not much good on hills as there is not a lot of mechanical advantage, unlike a racing hand minutes and reverse the process in cheap - about 2-3 times the price cycle where you use most of your about double that time. here as in the US. It is made by upper body as well as your arms, RioMobility and members will find It weighs about 13 kilos so it is and because of the short wheel YouTube clips if they Google as about as heavy as an average base the front wheel tends to spin well as the US web site. wheelchair. I prop myself against (i.e. loose traction). the boot and lift the wheelchair out I recognise that I am in the The great advantage is that unlike with one hand and then slide the privileged position of being able to a competition cycle it is easily Dragonfly out. While neither of my afford high quality equipment - transported in a medium size car (I legs has much strength, I do have both wheel chairs and orthoses - have a Subaru Liberty wagon) at still very considerable upper body and of having stayed pretty fit and the same time as your wheel chair. strength and I am fairly fit. active - but it could be relevant to I find that I can attach it in about 5 others. [However, the Dragonfly is] not
Dream and Do!
Source: Email from On YouTube there is a channel of Doug J. Cornfield Sr. his videos which can be found by Dave Clark Foundation, Ltd. searching Dave Clark Baseball.
Let me draw your attention to a I wanted to connect with your new video called "Crutches 2 organization regarding Dave Clark Champions" that can be found on who is a polio survivor and now the Foundation home page or on suffers with Post Polio. YouTube.
Dave's story is extraordinary in Please feel free to contact me for that he is the only professional more information. Dave is now a baseball player to ever pitch from keynote speaker sharing his Dream & Do! crutches. His story can be found on remarkable story and Post Polio two websites: gets explained and mentioned at www.daveclarkfoundation.org his talks. and www.daveclarkbaseball.com Page 6
Volume 2, Issue 3
The Indomitable Mrs P
The story of Mrs Tanya Pearson unaware of the plight of their regular physiotherapy sessions – OAM was recently aired on ABC daughter and granddaughters until which happened to be held in TV’s “Australian Story”, revealing they were informed of Nellie’s rooms in the local Heidelberg that “Mrs P” is actually a polio death. They collected Anna and theatre. On one particular day, survivor. Having immediately Tatiana and brought them to live Tatiana went through the wrong written to her Classical Coaching with them in Nikolayev, a town door and discovered a whole other Academy, Polio Australia was near Odessa on the Black Sea. world … ballet. There on stage was kindly granted permission to a ballet company rehearsing and include Mrs Pearson’s fascinating In Nikolayev, Anna regained her young Tatiana was mesmerised. story in “Polio Oz News”. The health, and mother and daughter following account appeared in the became inseparable. These happy From that day onward, she avoided Programme for an August 2012 times in The Ukraine were short her physio sessions, opting to hide performance entitled: “Mrs P - 50 lived however, due to the outbreak at the top of the theatre watching Years - A Celebration”. of World War II. Under German the performers rehearse. occupation, they were ordered to leave their homes with only the When Tatiana was 11 years old, possessions they could carry. her grandmother and aunt decided Separated from the men – Tatiana, the family should immigrate to her mother and grandmother were Australia. Devastated to be leaving put on to a train – never to see or Europe, but knowing the remaining hear of her grandfather again. family must stay together, they Transported like cattle, they were uprooted once again to begin a packed into the carriages - with no new life in a new country on the food or water - and escorted into other side of the world. Germany not knowing their fate. This new life began in a migrant They were displaced, without home, camp in the New South Wales identity or country. countryside, with Anna finding Arriving in Germany, most of the work as a housekeeper – and people on the train were taken to eventually a new husband. And in concentration camps - however, for keeping with their new life, Tatiana a reason lost in history, a kind became Tanya. Catholic Priest took Tatiana and her In Australia, Tanya was now free to family to live in his home in a pursue her love of ballet. She village in the Black Forest. There, began her ballet studies with they found shelter. Anna worked as Raissa Kouznetzova - an original a housekeeper and the family Ballet Russes member with a Born in 1937 in Russia, not far adopted a German identity, thriving ballet school in Bridge St, from Moscow, Tatiana Jacubenko’s changing their surname to Sydney. early years were anything but Schaefer. Tatiana became Erna easy. She never knew her father as Schaefer during her years in As an ambitious late starter, Tanya he abandoned the family not long Germany. progressed very quickly and at 17 after Tatiana’s younger sister, she was offered a scholarship to Nellie, was born. From that day, At the end of the war, the family train with the Borovansky Ballet Tatiana’s mother, Anna, never moved to Heidelberg, where Anna Academy in Melbourne. As a talked about her husband. All that obtained a job translating at the scholarship student, Tanya had to is known is that he was an actor University. Although the family was teach younger students every and musician, and … he had a still very poor, life slowly began to Saturday morning. This was her sister who was a ballet dancer. look up. Anna’s irrepressible first introduction to teaching and optimism and her love of music and Madame Boro complemented Anna’s health suffered greatly and singing had a profound influence on Tanya on her ‘good eye’ and she became seriously ill with young Tatiana’s life. These were natural teaching style. diphtheria and was sent to recover happy years full of imagination, in a sanatorium in Crimea, while fairy tales, music and hope. A few years later, Tanya joined The both Tatiana and her sister Nellie Borovansky Company working were placed in an orphanage in And it was here in Heidelberg that alongside such great dancers as Russia. Conditions in the Tatiana accidentally discovered the Katherine Gorham, Peggy Sager orphanage were dire and, magic of ballet and Leon Kelloway. Sadly, Edouard tragically, baby Nellie died of Borovansky died towards the end malnutrition within her first year. Suffering from a weakness in her of Tanya’s first year and the Tatiana’s grandparents were right leg (much later to be diagnosed as Polio) she was sent to Company known as The Page 7
Polio Oz News
The Indomitable Mrs P ( C o n t ’ d )
Borovanksy Ballet soon disbanded. companies such as Barbara Mrs P eventually established her Many of the dancers were out of Chambers, Kate Geldard, Karl selective coaching academy at work and devastated.... but not Welander, Glenys Bush, to name Crows Nest - turning her main Tanya! She quickly found just a few, and the Company’s first focus to assisting talented students employment as a resident dancer production of Nutcracker featured to achieve their dreams of a career with HSV Channel 7 performing in an 11 year old boy by the name of in Classical Ballet. variety shows such as Sunnyside Danilo Radojevic! Up and at a time when Newton and Over the years, many of her Kennedy were emerging as big A former Artistic Director of the students have taken top medals stars! It was the heyday of the Australian Ballet, Anne Woollams, and scholarships at local and television era and the start of the was so impressed by the company international ballet competitions swinging 60s! … that she urged the Governor of including the Sydney Eisteddfod, NSW and the Sydney City Council Prix de Lausanne, the Genee, and Some 18 months later, on the to support it by providing funding the Youth America Grand Prix. recommendation of guest and premises. Relaunched as the As early as 1983, Mrs P began choreographer George Carden, Sydney City Ballet Company, the taking students on international Tanya boarded a ship for England company employed over 20 dancers tours to Russia, Europe, England with only £10 in her pocket and no and performed at the Regent and and the United States, so that they return fare. Capitol Theatres, as well as touring could experience the broader ballet throughout NSW. With fellow Australians Barbara world and take classes with some Chambers and Heather McRae, With Marilyn Jones as Artistic of the world’s greatest Tanya performed throughout Director, Hassan Sheta as Ballet International Schools. In January London before all three were cast Master, and Sir Robert Helpmann of this year she completed her 23rd in the film – The Life Of Fanny as Patron, the company featured annual overseas study and audition Elssler starring Olga Ferri. many International Guest Artists tour.
including Wayne Eagling who It was here that Tanya met her Awarded the Outstanding Teacher performed with the Company in Prince – Keith Pearson. The two fell Award by her international peers at 1982. passionately in love, married in the 2009 Youth America Grand London and had two sons. In 1964, Several years later, the Prix, Mrs P this year received The Keith and Tanya returned to Government subsidy was Medal of the Order of Australia for Sydney with two young boys in tow unfortunately withdrawn. There service to the performing arts, and went on to quickly have two were insufficient funds to survive as particularly ballet, as a teacher and more girls Gabrielle and Nicole. a professional ballet company, but mentor to young dancers.
Mrs P was determined for it not to Tanya was offered a position with Today there are companies all over disappear altogether. Subsidising it the newly-formed Australian Ballet, the world with dancers who have herself, she re-formed it as the but she turned down the trained with Mrs P – from the Sydney City Youth Ballet – with the opportunity, deciding to hang up Australian Ballet to the National continued aim to provide emerging her pointe shoes and begin the Ballet of Canada, the Royal Ballet, dancers the opportunity to perform next chapter of her life – as a wife, the Hamburg Ballet, the HET full length ballets and put into mother and teacher. Nationale Ballet, Bayerisches practice what they learn in the Staatsballett, the Croatian National She started teaching local students studio on stage. Theatre, Zurich Opera Ballet, in the ground floor of her Featuring numerous guest artists Birmingham Royal, Magdeburg Forestville home, but her from The Australian Ballet, as well Theatre and the Slovak National reputation soon spread and young as International companies, each Ballet to name just a few. women and men flocked to the year the Sydney City Youth Ballet studio. This performance is in has continued to perform full-length tribute to the In 1971, Mrs P rented larger ballets to the general public indomitable Mrs P. studios at Belrose and set up the including the perennial favourite Northside Ballet Academy Nutcracker, as well as A Christmas expanding her training into RAD Carol, Cinderella and the world and other syllabi. premiere of Polar Express choreographed by Paul Boyd. That same year she established the Northside Ballet Company to In 1987, Mrs P established the Glen provide talented young dancers the St Academy with Janece Graham, opportunity to perform in full- and then went on to run the ballet length ballets alongside renowned department of the Dynamite Dance guest artists from professional Studios with David Atkins in 1989. Page 8
Polio Oz News
“We’re Still Here!” Campaign
arrangements. If you are not a member of a Network, please email Mary-ann Liethof or Ph: 03 9016 7678.
Note: As Polio Australia only receives irregular philanthropic ‘project’ funding, we are unable to assist with travel or accommodation. However, we do know that Rotary and Lions Clubs can be quite generous to members in their local communities when approached directly.
We have also been advised that MPs are often able to provide a modest contribution to members of their electorate for the purpose of travelling to Canberra to meet with them.
Unless your state’s Polio Network makes specific arrangements for its Polio Australia is delighted to taking this to your Party Room members, accommodation and announce that we now have or Caucus for discussion. transport will need to be organised approximately 30 polio survivors by you. Check here for options. and their family members joining We are still here - and we still us in Canberra on Wednesday 31st have a lot of fight in us yet!” We all know that there is strength October at the culmination of the in numbers, and this day will be an National Polio Awareness Month’s The proposed order of the day is: opportunity to stand/sit up and be counted. If Polio Australia is to “We’re Still Here” campaign. 9.30am achieve it’s Mission to “standardise Arrive at Parliament House Those coming are making 20 quality polio information and 10.00am minute appointments to see their service provision across Australia Media and/or Photo opportunity local Federal Members of for polio survivors”, we depend on 10.30am Parliament in the morning to your support. Launch of the “Overview of the Late discuss the issues identified at the Effects of Polio Clinical Practice Roundtable Forum on the Late Denton Trieu Module” with post polio community, Effects of Polio held in March, and Denton has Parliamentary Patrons and detailed in the resulting Health and recently joined the Parliamentary Friends of Polio Ageing Committee Discussion hard-working Survivors Paper. We recommend copies of team at Polio 11.30am this one page (double sided) Australia. He is Individual appointments with local Handout be left with the MPs, currently in his MPs which highlights the three final year of study 12.30pm recommendations made by the at Monash Lunch at Parliament House Committee and a call to action, University, 2.00pm namely: completing a Question Time Bachelor of Business (Marketing). “I am one of Australia’s 3.30pm hundreds of thousands of polio Depart to own activities Denton is volunteering at Polio survivors who needs access to Australia, taking care of the “We’re polio-specific services. I want What to do if you want to join Still Here!” campaign. With the to see not only the above us: help of the Polio Australia team, recommendations turned into If you are a member of one of Denton is working on this project action, but also the work being the state-based Polio Networks, to bring greater awareness of the done on my behalf by my state please contact their office to late effects of polio to a cross and national polio support advise your intention and have it section of the Australian networks receive long-overdue recorded. They will keep you community. Denton also will be funding. Show your support for advised about the day’s program looking to appeal to a younger the post polio community by and any state-based group audience using social media. Page 9
Polio Oz News
Polio Legacy Still With Australia
Source: skynews.com.au - number of survivors Monday August 20, 2012 have developed a range of symptoms.
Thousands of Australians may be These include suffering from the delayed effects fatigue, muscle of having polio without knowing it, weakness and pain, a federal parliamentary committee respiratory and has found. sleep problems, It's a legacy from the days when s p e a k i n g a n d Australia suffered epidemics of s w a l l o w i n g poliomyelitis, a potentially crippling difficulties and and sometimes fatal viral infection. intolerance to cold.
Georganas, said it was unclear how It was wiped out in Australia by However, doctors have been slow many were affected, but it was comprehensive vaccination to recognise it. likely to be in the thousands, with programs starting in the late Liberal MP Steve Irons, the many sufferers still unrecognised. 1950s. committee deputy chair, said on The committee has called for better However, the House standing Monday there were no particular estimates of the number of committee on health and ageing tests for the condition which could Australia's polio survivors and the has found, following a roundtable take up to six years to diagnose proportion suffering late effects, with health officials and polio correctly. and greater awareness of the groups, that many years after the The committee chair, Labor's Steve condition among medical groups. initial infection, an increasing
Australian Medicare Local Alliance Launched
Source: Joint Release “Medicare Locals will improve the ensuring the ‘big picture’ in The Hon Tanya Plibersek MP, coordination and integration of primary health care across the Minister for Health primary health care in local country comes into focus and I look The Hon Mark Butler MP, communities, addressing service forward to working with the gaps and making it easier for Minister for Mental Health and Alliance in building a better health patients to navigate their local system.” Ageing, Minister for Social healthcare system,” she said. Inclusion, and Minister Assisting Nationally, 61 Medicare Locals have the Prime Minister on Mental “As the body responsible for been established to identify gaps in Health Reform supporting Medicare Locals at the primary health care services at the 16 August 2012 national level, the new Australian local level, especially for high need Medicare Local Alliance will assume and underserviced groups, and to a key leadership role in primary Australians can look forward to better target services to respond to health care.” more effective and cohesive those gaps.
primary health care with the launch Mr Butler said the Alliance will The Australian Government has of a new national body to lead the support Medicare Locals to become committed a total of $493 million network of Medicare Locals. high performing organisations and, from 2010-11 to 2012-14 for the
from 1 January next year, Minister for Health Tanya Plibersek establishment and operation of coordinate the provision of state- and Minister for Mental Health and Medicare Locals. It will also be the based functions on behalf of the Ageing Mark Butler today attended primary funder of the Australian Medicare Local network. Medicare Local Alliance. the launch of the Australian Medicare Local Alliance in “The Alliance will play an important Parliament House, Canberra. role in preventive health and health
promotion, and will work with a Ms Plibersek said the Australian wide set of stakeholders, including Medicare Local Alliance will play a those in general practice, allied key role in ensuring Medicare health, and the aged and social Locals function effectively and care sectors,” he said. efficiently and work as a cohesive group, responsive to changing “The Australian Medical Local Government priorities. Alliance will play a vital role in
Page 10
Volume 2, Issue 3
PCEHR System Now Live
Source: Consumer Health Forum Consumers can now register for their own record (online, by telephone or in person at a Medicare office) and access a consumer portal. Health professionals will be able to access the PCEHR system and upload information to it in the coming months.
CHF has maintained a strong interest and involvement in the development of the PCEHR system, and will continue to do so as the system evolves. With some health professional groups raising concerns about how patient control will impact on the completeness of the record, CHF has strongly maintained that personal control is a fundamental element of the system, and that the record should only be a starting point for discussions between consumers and health professionals.
“Patients typically do not give full and complete information about their health to their doctor, and there are often legitimate reasons why they don’t,” said Ms Bennett.
“There will only be a very small minority of cases in which people will choose to restrict access to key CHF Chair, Stephen Murby, discusses the PCEHR with information in their PCEHR that could affect the quality other consumer representatives at a CHF workshop of care they receive.”
“The idea it is going to be a widespread problem is The Personally Controlled Electronic Health spurious at best.” Record (PCEHR) system went ‘live’ on 1 July 2012.
Triclosan Warning
by Dr Margaret Peel (Queensland)
A 2012 publication in an early edition of the American PNAS (Proceedings of the National Academy of Sciences) reports that the antibacterial agent triclosan potently impairs the contractility of skeletal (and cardiac) muscle. Triclosan is widely used in personal care products, such as mouth washes, toothpastes, deodorants and antibacterial soaps, as well as cleaning agents and it has even been incorporated into fabrics and plastics. The reference is: Cherednichenko G, Zhang R, Bannister RA. Triclosan impairs excitation- contraction coupling and Ca2+ dynamics in striated muscle, 2012. Read the abstract here.
In view of these findings, it seems to me that it would be prudent for those of us with Late Effects of Polio/ Post Polio Syndrome to avoid personal products and cleaning agents that contain triclosan.
Read more about triclosan here: http://en.wikipedia.org/wiki/Triclosan Page 11
Polio Oz News
A Journey With Polio by John Marsh (NSW) Swimming was recommended for Street – closer to the city office for exercise, so in 1952 my parents me than for any other staff bought a weekend place at DeeWhy member! where I learned to swim in the local rock pool. (We moved to DeeWhy in On our return to Auckland in 1970 1953.) In late teens I had my right I took up a position as an ankle stabilised and learned to walk investment officer in South British by locking my right knee back. The Insurance Head Office, always caliper was thrown away! Walking making the time to fit swimming wasn’t fast, but I could get to the into the schedule. We bought a beach and could swim more easily, house, and had two children, a which led to many hours of body daughter in 1973 and a son in surfing, much sunburn and a good 1976. I could still walk unaided but social time with the local peer the right knee was becoming more group as well as a lifetime physical unstable; carrying a child was skill. definitely not on the agenda!
Leaving school in 1957, I went to Various promotions with my Sydney University to gain an employer saw a year’s temporary Economics degree. Most of the secondment to Australia Head degree was done part-time while Office (Sydney) to assist in a working on a cadetship in the corporate restructure, after which I general insurance industry; became General Manager for NZ of accessing the university buildings NZI Insurance in Auckland. The trip with their multitude of steps and back to NZ was made rather One morning in April 1951 I got lack of railings was almost as hard complex when I fell and broke my out of bed – or tried to – and fell, as the exams! However, the right knee cap, and this led to the and found that I was unable to insurance office was on the direct decision to undergo an operation to walk. Polio was quickly diagnosed; tram/bus route to University and permanently stiffen the right leg in Sydney had an epidemic at the therefore much easier. At the time I a straight position. I started my time. was very fit from swimming and new job on crutches, with my secretary driving me to and from My family lived at Parramatta, and could walk a long way, albeit rather slowly! work each day! at 10½ years of age I was sent to the isolation ward at Prince Henry With a degree, and accounting and The straight leg worked well and Hospital, Little Bay. Both my legs secretarial qualifications plus an gave much greater stability on the were affected; the right with total Insurance Diploma behind me, I whole, but its disadvantages loss of foot, ankle, knee and hip accepted a transfer to the Auckland included difficulties in the regular function, the left leg and my back Head Office of my employer, South air travel that was part of my work only slightly impaired. Both left leg British Insurance. There in (my seat needed to have some and back did recover really well, Auckland I met my wife, Margaret, extra room in front of it), and in but the right leg remained with and we married in 1966. My driving (the car bulkhead needed little function. mobility and exercise pattern to have extra height to position the leg). I drove using my left foot only November 1951 saw me moved to remained pretty static, apart from a few falls (one of them on our (as I still do) and kept up the Parramatta Hospital for swimming regime. rehabilitation and the fitting of a honeymoon!). full leg calliper. Learning to walk Margaret received a postgraduate In 1987 the family moved again was not easy after 6 months scholarship in 1967 and it was off permanently to Sydney where I in bed, especially on a frame and to London, she to London took on a position as General with little physiotherapy! University, myself to work in the Manager Finance for the worldwide operations of NZI Insurance. After Fortunately, schooling continued London branch of South British. yet another merger took place I while I was at Prince Henry, London’s snow and ice did defeat left my long-time employer and perhaps inadequately, but it got me when they happened, but in our worked briefly as CEO of The me by. In addition, to the time there we were privileged to go Spastic Centre of NSW, then for 5 amazement of staff and visitors, regularly to the opera and ballet at years as Insurance Division my parents arranged for the Covent Garden (sitting in ‘the Manager of The Work Cover Sydney Morning Herald to be gods’) and to Royal Festival Hall, as Authority of NSW. I enjoyed my delivered each day, an initiative well as travelling on the continent time in government, especially the that helped my reading skills to in holiday times. We lived in central policy-related work dealing with develop. London, 550 metres from Regent Page 12
Volume 2, Issue 3
A Journey With Polio ( C o n t ’ d ) the Scheme, and meetings with all very common, almost normal, in risk’, and I have now acted on that the lobbyists seeking Scheme post-polios. advice and need to use a walker changes! both in- and out-side home. Falling Gradually declining mobility and is so easy – it’s just not worth the Another few falls shortened my another broken knee cap (on the risk. I exercise daily and attend a final business role at MMI (now ‘good’ leg this time) persuaded us gym several times a week. Allianz). My left leg was now that it was time to leave the weakening, no doubt after having mountains, and even to give up the Painting is a favourite pursuit still, worked so hard for so many years. garden we had so much enjoyed - and I have had a number of (Only later did I learn that this was the joy of it being particularly in exhibitions in rural NSW, and won actually due to the late effects of doing it ourselves. But where to go? a number of awards at art society polio.) We took the plunge and returned to and municipal shows in Sydney and Sydney into a self-care retirement the Blue Mountains. (see below) I retired early and we moved to complex in Mosman, a move that Margaret and I both enjoy Blackheath in the Blue Mountains has proven to be timely (and has travelling to rural areas very much, where, through our own efforts, we led to much pleasure) since I have and regularly go for short or longer established an attractive cold encountered further gradual breaks. Closing the door to the unit climate garden and I took some art weakening in my mobility. is easy! I can’t walk the country lessons – something I had always high streets as I used to but can wanted to do. Community Attending the first Post-Polio still manage most galleries and involvement encompassed various Retreat in Sydney I learned of the sites (and motels) with good roles in Blackheath Rotary, on the late effects of polio, and much else, access, few or no steps, and small Board and as President in 2002. I as well as for the first time meeting distances to walk. became very involved in The a range of people similarly affected Blackheath Art Society, where I to myself – it’s amazing but in all So, the journey continues – was President for 5 years, and with my life’s journey I had ever only adapting as necessary, and blessed The Blue Mountains Rhododendron met one or two such souls! by marriage, family (our daughter Garden as Treasurer. Towards the is now a university liaison librarian, end of our mountains sojourn I was By this time I was using a walking and our son a research scientist), appointed Treasurer of Great stick for security outside the house, friends, a very comfortable and Community Transport, the operator and the Retreat advice led me to friendly community in our for Penrith and the Blue Mountains get a full physical assessment and retirement complex . . . plus good Local Government Areas (a role I request a full suite of exercises books, the web, art, music, daily continue at the time of writing). geared to mobility/stability exercise . . . and last, but certainly maintenance. How much I owe to not least, the assistance and Amidst all this a triple bypass heart that Retreat! A physio then warned wisdom offered by the range of operation slowed me for a while; me that I should consider using a medical and physiotherapy interestingly, the heart specialist walker outside since I was ‘at clear services, and organisations like was clear that heart problems are Polio NSW and Polio Australia. “Touched By Polio” Art Exhibition
As mentioned in previous publications, Polio Australia is planning an Art Exhibition titled “Touched By Polio”. This Exhibition is based on plaster cast torsos and half legs being painted or crafted by people who have been “Touched By Polio” - John Marsh is one of 20 artists who have agreed to contribute so far. The idea is that the completed artworks travel between Melbourne and Sydney, and are on show for one week in each location. We hope to launch the Exhibition in February/March 2013. The works will be auctioned during the launch or sold throughout the Exhibition in order to raise much needed funds to support Polio Australia’s work for our post- polio community. A second “Touched By Polio” Exhibition is in the planning for Tasmania, which is being driven by Launceston-based artist and Orthotist, John Semmens.
We are very thankful to La Trobe University, whose Orthotics students are volunteering to make the casts, and Bunnings Hawthorn for materials support. We are still very keen to find Rotary partners to work with us. Devil's Pinch 2
For information/enquiries about how to contribute, email Mary-ann Liethof. Page 13
Polio Oz News
Express Yourself!
2013 Polio Health and Wellness Retreat Body / Mind / Spirit South Australia in April 2013
Expression of Interest
Polio Australia will once again be facilitating its 4 day/3 night day Polio Health and Wellness Retreat for polio survivors and their partners from Thursday 18 to Sunday 21 April, 2013. This time we will be enjoying the hospitability of the Stamford Grand in the delightful seaside suburb of Glenelg, South Australia. The holistic ‘Body / Mind / Spirit’ theme will continue and include:
Interactive group sessions and one-to-one consultation opportunities with a variety of allied health professionals Hydrotherapy and exercise options Latest orthotics, aids and equipment displays Seated Yoga and Meditation Sessions Activities To Keep The Mind Active Creative Workshops and Singing for Health Massage therapy
See details of previous Retreats at www.polioaustralia.org.au / What we do / Self Management
Polio Australia’s Health and Wellness Retreat—South Australia
Expression of Interest only
(Estimated registration fees for 3 nights accomm, all meals and most activities = $350 pp double / $400 single)
Please provide me with more information on the 2013 Polio Health & Wellness Retreat when available.
Name:
Address:
Phone/s: Email:
Return to: Polio Health & Wellness Retreat, Polio Australia, PO Box 500, Kew East, VIC, 3102 or Email: [email protected] Page 14
Volume 2, Issue 3
Polio This Week
Source: Polio Global Eradication Initiative - as of Wednesday 29 August 2012
Remembering our colleagues in Nigeria: 26 August marked one year since a devastating explosion hit UN House in Abuja, Nigeria, where WHO, UNICEF and other UN organizations were based. This week, we remember our polio colleagues who gave their lives during this attack: Mr Johnson Awotunde, Monitoring and Evaluation Specialist UNICEF; Mr Ahmed Abiodun Adewale-Kareem, Logistician UNICEF; Mr Fred Willis, Logistician UNICEF; Dr Edward Dede, National Professional Officer for Routine Immunization WHO; Musa Ali, Engineer and Zonal Logistics Assistant for the North West Zone WHO; and, Prince Abraham A Osunsanya, Administration of Immunization Programmes WHO. In total, the explosion claimed the lives of 23 people and injured many more. This event was a tragic example of the dangerous conditions in which our colleagues are frequently working under, in their efforts to protect children everywhere from polio.
Wild Poliovirus (WPV) cases
Total cases Year-to-date2012 Year-to-date2011 Totalin2011*
Globally 128 356 650
-in endemic countries 123 122 341
-in non-endemic countries 5 234 309
Case break down by country Year-to-date 2012 Year-to-date 2011 Date of Total in Countries most re- 2011* WPV1 WPV3 W1W3 Total WPV1 WPV3 W1W3 Total cent case
Nigeria 61 16 77 19 7 26 62 28-Jul-12
Pakistan 26 2 1 29 76 1 77 198 21-Jul-12
Afghanistan 17 17 18 18 80 21-Jul-12
India 1 1 1 13-Jan-11
Chad 5 5 106 3 109 132 14-Jun-12
DR Congo 75 75 93 20-Dec-11
Angola 4 4 5 07-Jul-11
Niger 1 1 2 5 22-Dec-11
CAR 4 08-Dec-11
China 21 09-Oct-11
Guinea 2 2 3 03-Aug-11
Kenya 1 30-Jul-11
Côte d'Ivoire 35 35 36 24-Jul-11
Mali 7 7 7 23-Jun-11
Congo 1 1 1 22-Jan-11
Gabon 1 1 1 15-Jan-11
Total 109 18 1 128 302 56 0 358 650
Total in endemic 104 18 1 123 114 8 0 122 341 countries Total out- 5 0 0 5 188 48 0 236 309 break
Data in WHO as of 30 Aug 2011 for 2011 data and 28Aug 2012 for 2012 data Page 15
Polio Oz News
Paralympic Spotlight on Polio Eradication
Paralympic athletes at the garden party sponsored by Rotary in Great Britain and Ireland (RIBI), in association with UNICEF, the Bill & Melinda Gates Foundation, the British Pakistan Foundation, and the Global Poverty Project.
Photo by Jordi Matas
world. Wajid Shamsul Hasan, the by Ryan Hyland High Commissioner of Pakistan to Polio Athlete Hopes To Source: Rotary News - 31 the United Kingdom, praised Inspire Pakistan August 2012 Rotary’s efforts to eradicate polio in Pakistan and spoke about his by Shahid Hashmi Perseverance and dedication are government’s commitment to step Source: AFP qualities that both Paralympic up resources to rid his country of athletes and Rotarians use to reach the disease. KARACHI — Pakistani polio their goals. survivor Mudassar Baig dreams Diment said advocacy efforts have of winning a medal at the London To highlight this common bond, become more important than ever, Paralympics, hoping to inspire a British Rotarians used the as funding shortages have forced nation troubled by corruption, excitement surrounding the the Global Polio Eradication Taliban violence and lost sporting opening day of the 2012 Initiative (GPEI) to cancel or scale glory. Paralympic Games on 30 August to back immunization activities in high rally government dignitaries from -risk countries, leaving more "It's a dream come true for me the United Kingdom and Pakistan children vulnerable to the disease. and I want to be a role model - to raise funds for Paralympic not only for disabled people in athletes and Rotary’s PolioPlus The GPEI launched an emergency my country but also for the able- program. action plan earlier this year but is bodied who lose courage," said US$1 billion short of what it needs Baig, whose right leg was left “We wanted to celebrate the in order to implement the plan shorter than his left by polio in achievements of these amazing through 2013. Rotarians can help, childhood. athletes and Rotary’s hard work Diment says, by lobbying their towards polio eradication,” says governments to commit funding for The 33-year-old post office clerk Judith A. Diment, PolioPlus national polio eradication and by spreading who thought life was over when advocacy adviser for the UK and a the word about the immense he couldn't run as fast as the member of the Rotary Club of benefits of finally eliminating this other boys Windsor St. George, England. crippling disease. growing up, “Both groups have persevered is one of four through great odds to be where “We must continue to reach out and a t h l e t e s we’re at today.” put Rotary’s effort in front of the representing opinion makers and governments Pakistan at Rotary in Great Britain and Ireland so they act in helping us achieve the London (RIBI), in association with UNICEF, our goal of polio eradication Paralympics the Bill & Melinda Gates worldwide,” says Diment. from Aug 29 Foundation, the British Pakistan to Sep 9. Foundation, and the Global Poverty Visit the new End Polio Now website Project, sponsored the garden to help Rotary advocate for a polio- party in London attended by more free world. Photo: Mudassar Baig, than 100 people, including five Paralympic athletes, three of whom whose right leg Read other ways Rotarians in the was left are polio survivors. United Kingdom are supporting shorter than
Paralympic athletes. The event raised thousands of his left by polio in childhood, dollars for PolioPlus and the will compete in Pakistani Paralympic Committee the 200 and and advocated for a polio-free 400m (AFP/ File, Str)