POLIO NSW INC formerly Post-Polio Network (NSW) Inc
N E T W O R K N E W 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
Polio Australia was delighted to be given the opportunity to field a team in Northcott's “Walk With Me” fundraising event held in Parramatta on Friday 13 th September. The day dawned cool, but reasonably sunny and, thankfully, dry. Polio Australia’s “Parramatta Promenade” team (comprising Polio NSW members and friends – some are pictured below) have raised over $8,000 to date towards Polio Australia’s vital work in support of polio survivors and their families – in other words, in support of YOU! This is a magnificent effort, and it’s not too late to donate – just visit
I hope to see many members at Polio NSW’s 25 th Annual General Meeting to be held at Burwood RSL on Saturday, 30 th November. Our Seminar speaker following the meeting will be Anne Reddacliff from The Black Dog Institute who will be presenting on “Breaking Down Depression and Building Resilience”. Don’t miss it!
Our Annual Report will be issued in November. Until then, we hope you enjoy this bumper Network News !
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 87 – September 2013 Page 1
By Anne Buchanan, Publicity Officer
October is almost upon us and brings with it Polio Awareness Month. In other words, it is that time of year when we, as an organisation, work to promote awareness within the polio community as well as to remind the medical and general community that polio is still around, although in Australia it now presents itself in a different form for the majority of polio survivors.
To help raise the profile of polio and its late effects, you will find a poster included with this Network News . Flyers are also being printed – hopefully they’ll make this mailout (if not, they’ll be sent to you next time). Your Management Committee would be grateful if you could put this publicity up in appropriate locations where you live and/or in places you visit. Suggestions are medical centres, doctors’ surgeries, pharmacies, community noticeboards, and even some shops (eg Gloria Jean’s) have noticeboards. The choice is entirely yours.
We would also be interested to hear from anyone who thinks of an unusual site to place a flyer or poster, or who has an interesting experience when “spreading the word”. It could be that your idea this year may be useful to someone else to use next year. Feedback is never a bad thing and is always most welcome. It helps your Committee do a better job for you, so please tell us about your successes, your difficulties, and your suggestions with this promotion. Our posters and flyers can also be viewed on, and downloaded from, our website at
The Committee thanks you for your help and support with our publicity efforts not only during this annual awareness activity, but all year round, and wishes you every success.
Dr Susan Perlman gave her annual state of Post-Polio Research presentation to Orange County on Sunday, May 19, in Villa Park. A copy of the presentation can be found on the
Because of aggressive vaccination programs throughout the world, we grow ever closer to a time when wild polio is no longer the virulent epidemic it once was. The resistance to aid workers and a fear that the vaccination workers are channels for espionage has made the programs in these three countries very difficult and dangerous.
Dr Perlman gave a rundown on the studies which were implemented or findings reported during the past year, some of which were follow-on studies to those discussed in past addresses. The efficacy of IVIG (Intravenous immunoglobulin) treatments continues to mount and the results show far longer benefits than were shown in prior studies. It appears that multiple infusions of the IVIG over several days can produce results lasting a year or more. This is very encouraging. However, the price for such treatments is still very high. As the evidence mounts as to the benefits, it will be much easier to make a case to insurance companies that the benefits outweigh the costs. It does not require continuous infusions to demonstrate positive results.
Some of the studies identified significant risk factors for individuals who were likely to suffer from the late effects of polio. One study indicated that females are more prone to develop
Page 2 Network News – Issue 87 – September 2013 Polio NSW Inc the condition, which other studies dispute. They all seem to agree upon the fact that the level of destruction of nerves in the initial acute stage was a strong factor in the development of PPS. Other factors suggested are age at the onset of the acute phase.
In addition to the research studies implemented or reported over the past year, Dr Perlman included two case studies that were indicative of new information about the potential late effects of post-polio on patients. The first covered concerns of anesthesia on post-polio patients and her recommendation that even minor surgeries that include minimal amounts of anesthesia be done in hospital rather than as outpatient procedures, as a precaution. There is ample evidence available that such procedures can result in prolonged unconsciousness and she will no longer agree to such procedures for her patients unless they are admitted at least overnight for observation and monitoring.
The second case study involved bladder muscle failure of autonomically enervated muscles, which in the past have not generally been associated with post-polio syndrome. However, after a review of the literature over several decades, there is evidence, albeit rare, of such muscular failure which affects the bladder or its support system causing the condition described.
These case studies generated considerable discussion. Much of it focused on individual experiences, mainly negative, with anesthesia for even simple dental procedures, as well as other usually benign routine periodic health checks such as colonoscopies. It is advised that should your physician recommend such a procedure, he and his anesthesiologist be given a copy of Dr Calmes article on the deleterious effects of anesthesia. (A copy of Dr Selma Calmes article is included with this issue of Network News as a handout to give to your medical practitioners)
The discussion also included experiences with physicians who have limited knowledge of post-polio or insensitivities to the special requirements that might be necessary to treat us. There are occasions when it might be imperative to seek out someone who has greater knowledge of the condition, which is always preferable. However, should you feel it is incumbent to continue with a physician who has limited experience or knowledge of post- polio, there is enough material online that can provide a minimal knowledge base for any doctor. In California, we are especially fortunate in that there is a recommendation by the state medical board for basic information requirements for treating such patients. That requirement to be minimally informed on the condition can translate into increased liability for adverse effects during treatment of post-polio patients. Not all states have the same requirements that California does.
One final caveat expressed by Dr Perlman is that however many specialists you are seeing, it is imperative that you have one person who is your ‘gatekeeper’ coordinating your care with all health providers so that there are no conflicting treatments or medications and that everyone knows and understands the desired outcomes and protocols being implemented. It can be your general practitioner or one of your Specialists, but it should be someone with whom you are comfortable. You should feel you can be very candid and open with this person and confident that they are the leader of your ‘team’.
Disclaimer by the PPSG of OC and Rancho Los Amigos Support Group : Information provided in our newsletters and at our meetings is provided solely as information. It is not to be taken as an endorsement of any product, individual, medication, or treatment. If you have personal medical problems, please consult your own physician knowledgeable in the late effects of polio. Unless otherwise stated, the articles in this newsletter may be reprinted provided that they are reproduced in their entirety, and the author, the original source, and the PPSG of OC and/or the Rancho Los Amigos Support Group are acknowledged in full. Copyrighted articles require prior approval, and no article may be edited.
Polio NSW Inc Network News – Issue 87 – September 2013 Page 3
By Tricia Malowney Reprinted from the Eastern Polio Support Group Inc. Newsletter, July 2013 – [email protected]
Many people have been asking for information about DisabilityCare Australia – who is in, who is out, what’s in it for me? My priority has been on ensuring that the needs of all Australians with disabilities are met, regardless of diagnosis, and it is important to note that Australians with polio are not the only Australians who are affected by the rules.
The following information has been provided by Lesley Hall, the CEO of the Australian Federation of Disability Organisations, which has been at the forefront of ensuring that our needs are met.
Following is the response from DCA regarding questions that were raised at the members meeting on the rollout of the NDIS.
People over 65
People over 65 will be able to access the NDIS if they have “previously accessed supports”. What exactly will this mean, especially for people who have an episodic need for supports (and, my own addition, for people who can’t access supports right now because there aren’t any or the waiting lists are too long)?
People who are DisabilityCare Australia participants can chose to remain in the scheme on turning age 65.
Eligible participants who do not have ongoing funded supports as part of their current plan may still be considered to be participants if they meet eligibility for the scheme and can therefore chose to remain in the scheme on turning 65. For example, a participant who may have had funded supports such as home or vehicle modifications in their plan previously (episodic supports) but does not have any ongoing funding in their current plan is still considered to be a participant if they meet all of the access requirements.
People who had been participants in the scheme but exited the scheme because they no longer met the access requirements will not be eligible to re-enter the scheme after 65. For example, a child who received early intervention to address a developmental delay, who after receiving that early intervention no longer had any ongoing care and supports needs and exited the scheme, would not be able to access the scheme as a 65 year old.
People who ‘can’t access disability supports right now because there aren’t any ’ (not current disability service clients) will not be able to access the scheme if they are 65 years or over.
People who are currently on waiting lists for State/Territory disability services will enter the scheme in launch locations as follows: • People with disability on state-based waiting lists in Victoria and Tasmania will be treated as existing clients and will access DisabilityCare Australia in the first tranche. • In South Australia they will be phased in as existing clients with their age cohorts so will access the scheme at the same time as their peers. • In NSW, these individuals will be treated as new clients and can access the scheme at any time. The numbers on these waiting lists, particularly in Victoria, have expanded since the initial agreement to phase them. Page 4 Network News – Issue 87 – September 2013 Polio NSW Inc Access requirements
Can the agency meet access requirements for private meetings where necessary? Any person requiring accessibility or other assistance (for example, live captioning or Auslan interpreters) can be made available at meetings. If you require an interpreter or other supports please contact the organiser of the meeting for DisabilityCare Australia and they will organise and pay for the relevant assistance.
One of the Commonwealth ‘in kind’ supports is the National Auslan Booking Service. Does this mean that in the launch sites people who need interpreters for a range of things will only be able to book them through NABS? No. NABS will continue to provide the existing contracted service and this can be recognised as an in-kind for DisabilityCare Australia participants in launch sites.
Guidelines for assessment A fact sheet on planning and assessment is currently being prepared and will be on the DisabilityCare Australia website shortly.
Funded Service Providers What exactly constitutes a ‘funded service provider’ for the purposes of transitioning people across under the intergovernmental agreements? This was particularly raised in terms of vision impairment, which isn’t mentioned under the IGAs at all and which often means people access supports sporadically.
Funded Service Providers are those which have been identified by jurisdictions as providing a contribution to the scheme over the launch period.
If everyone from a single service provider is transferred across at the same time, will they be stuck with that service provider? What steps will be taken to ensure people aren’t pressured to stay where they are in the lead up to the transfer? The launch will focus on increasing choice and control for participants of the scheme. Previous moves to individualised funding in other jurisdictions has demonstrated that people choose to keep their existing supports initially but overtime may vary their choice to include alternative supports that meet their needs. As some programs are being offered in- kind there may not be as wider choice as there will be as launch progresses. However, plans can be reviewed if required over time.
People with existing disability who have a catastrophic accident The exact arrangements for eligibility DisabilityCare Australia participants who have a catastrophic accident will depend upon who is responsible for assisting the person in respect of their catastrophic injury. Options could include DisabilityCare Australia continuing to provide all of the person’s disability supports and seeking reimbursement from the responsible third party, or DisabilityCare Australia providing support for the pre-existing disability and the third party providing support in relation to the catastrophic injury (which would obviously need to be coordinated). Regardless, the overarching principle will be that DisabilityCare Aust. provides the care and support that a person needs when they need it.
Mobility Allowance DisabilityCare Australia participants (including those that stay in the scheme after age 65) will not be able to access Mobility Allowance, following receipt of a funded package, as all of their reasonable and necessary travel costs will be met by the scheme. People currently receiving Mobility Allowance will need to relinquish it when they receive a funded package through DisabilityCare Australia. Mobility Allowance will still be available for people who Polio NSW Inc Network News – Issue 87 – September 2013 Page 5 are not able to access DisabilityCare Australia provided they meet the eligibility criteria for that payment.
Rural and regional services and CALD services DisabilityCare Australia’s funding arrangements will be flexible enough to be able to address unique needs. Block funding may be appropriate in certain circumstances provided it does not overly limit an individual’s choice and control. There will also be some flexibility around who can be engaged to provide supports, but will be balanced by the need to provide safeguards for the person with disability (particularly if they are vulnerable). People will generally not be able to employ family members, but it may be considered in exceptional circumstances.
Data Collection DisabilityCare Australia’s will be collecting extensive date in order to meet the accountability requirements of the Standing Council on Disability Reform and also to manage scheme performance. This will include information about the reasons why people were not able to access the scheme.
Information about the Scheme People were also keen to have this information so they can pass it on through their networks. It was stressed that there should be information about what the delays between applying and finding out whether you’re ‘in’ will be.
The website is being regularly updated and recently more information for participants was put onto the web. Products are being developed that will provide a higher level of detail about access processes. The MyAccess checker is now available on the website.
For more information, the website address is
It has been drawn to the attention of the Management Committee that many of our members forget to carry their Medical Alert Card with them, and forget also to show their copy of the publication “Hospital, Medical and Dental Care for the Post-Polio Patient - A Handy Reference” to the various health service providers they attend.
It is wise to remember at all times that it is in your best interest to make all your health care providers (including dentists) aware of the Late Effects of Polio and the many and varied special needs which may result. As we all know only too well, a large number of health professionals know little or nothing about polio and its late effects, so it is up to each of us to ensure that every person treating you knows as much as possible about polio and its late effects before they commence treatment of any type.
Perhaps you have moved residence and have had to change your service providers, perhaps the Clinic you attend has new staff, or even your long-term health professional could do with a gentle reminder and update regarding your special circumstances. As you are reading this, could it be that you are thinking to yourself “ I wonder where I have put my Medical Alert Card and/or Handy Reference ”?
Whatever your particular situation, you will find “A Handy Reference” enclosed with this Network News to help you to easily distribute the appropriate information to all the health professionals involved in your care. Polio Australia with the input of all State Polio Networks is currently developing a national Medical Alert Card (will in due course replace the current Polio NSW card ) and we will issue you one as soon as they are available. In the meantime, if you have misplaced your existing NSW Medical Alert Card, the Polio NSW Office still has a limited stock so contact George and his team to obtain one. And, most of all, don’t forget to use these important resources!
Page 6 Network News – Issue 87 – September 2013 Polio NSW Inc
The purpose of My Aged Care is to provide people with information about the aged care system and how to access services.
What are the benefits? It is the one point of contact for older people, their families and carers wanting clear, consistent and reliable aged care information. It will also provide accurate and consistent information on healthy and active living, and a fast way for people to find service providers near them. The My Aged Care national contact centre will directly transfer calls to service providers who may be best placed to help. Where appropriate, calls will be transferred to the Translating and Interpreting Service, or to the National Relay Service.
When will My Aged Care Commence? My Aged Care commenced from 1 July 2013. You can contact the My Aged Care national contact centre on 1800 200 422. You can also visit
Hours of operation: 8 am to 8 pm Monday to Friday and 10 am to 2 pm Saturday (local State and Territory time). Closed on Sundays, and national public holidays.
Have you booked your tickets yet for the Polio NSW Fundraising Benefit Concert on Saturday, 26 th October 2013? Phone and book via Lisa Budin 0430 050 548 or the Polio NSW office on 02 9890 0946. Tickets cost only $28 and payment can be made on the night, but you must book – be sure to get in early as there are a limited number of tables.
So, please make every effort to gather your family and friends together and attend this concert in support of Polio NSW – and have a great evening at the same time!
Polio NSW Inc Network News – Issue 87 – September 2013 Page 7
Written by Mary Corbett, First Printed in Spinal Injuries Association’s The Advocate Magazine, May-June, 2013. ([email protected])
Lord Nelson is the first accessible tall ship to sail around the world and you can join as a crew member when she makes her first visit to Australia this year.
She is the first accessible ship to sail around the world and she’s on her way down under.
Built in England in 1986 and officially launched by Prince Andrew and Sarah Ferguson, the 55-metre square rigger is taking part in the Norton Rose Sail t he World Challenge.
It is a journey of more than 80,000 kms designed to promote equality and inclusion at every port of call. During the 23-month voyage, the vessel will make four equator crossings, covering 30 countries in all the seven continents. At each port of call, locals get the opportunity to join the ship as members of the voyage crew for the next leg.
Josephine Hall from Jubilee Sailing Trust, a charity which owns and operates the Lord Nelson, told the Advocate: “ We shall be arriving in Fremantle on 20 July. We aim to sail with 50 percent people with disabilities and 50 percent able-bodied crew and they work together as a pair and then within a team (watch). We can take up to eight wheelchair users, four visually or hearing impaired and those aged 16 or older with no upper age limit ”.
“We are really looking forward to visiting Australia and hope that some of your members will be able to sail with us on this unique experience. ”
The Lord Nelson was a pioneer in the sailing community. She was designed and built to enable people of all physical abilities to sail side-by-side on equal terms. Since her launch, she has taken 37,000 people to sea, 14,000 of whom were people with physical disabilities, including 5,000 wheelchair users. The permanent crew is highly professionally trained and medically skilled. On each voyage, 40 trainees with all kinds of backgrounds and abilities can help crew the vessel.
It is built to enable people of all physical abilities to take an equally active role in sailing her. Some of the features on board are Braille signs, lifts between decks, wide aisles, vibrator pads fitted to the bunks to alert crew members in the event of an emergency, power- assisted and ‘joystick’ steering and a speaking compass. There are eight spacious cabins, suitable for wheelchairs, fitted with seats and adjustable basins in the shower.
Spinal Injuries Association Ireland member James Walsh, from Cork, who has L2 incomplete paraplegia and walks with the aid of a crutch, took part in one of the early legs of the journey, from Dublin to Greenock, Scotland over six days.
He was one of 37 temporary crew members for the trip. Upon joining the ship, there was a one-hour crew briefing by the first mate and subsequently James was assigned to the aft starboard watch. As a watch member, he was required to carry out the full duties of a Page 8 Network News – Issue 87 – September 2013 Polio NSW Inc watch member, for example, ship watches at various times throughout the voyage, one of which was the middle watch from midnight to 4 am; 24 hours of duty as mess man to assist the cook in preparing dinner, breakfast and lunch and also serving up the meals to his fellow crew members.
Each crew member with a disability is partnered with an able-bodied crew member. The partners, apart from being crew members, are there to give any assistance when requested. James’ partner was Paul Goodall and during the voyage, they formed a great bond of friendship.
The ship left from Dublin city centre, where it was berthed with a number of other ships which had taken part in a tall ships race. All the ships sailed in flotilla down the River Liffey. James said it was a wonderful sight “ with all sails out and a blue sky ”.
The highlight of the trip for James was when he climbed the rigging up to the crow’s nest. He described it as an unforgettable experience, one that will remain with him for the rest of his life. James says that the whole voyage was one of the most exhilarating experiences he’s had. He learned many new skills, especially working with ropes and sea navigation. He does admit it’s not for the faint-hearted but he says, “ If you’re up for it, most definitely go for it ”.
The Jubilee Sailing Trust subsidise the costs on every voyage to make their tall ship adventures as affordable as possible. They also offer help to those who might struggle to afford the full cost.
They are currently organising day sails and open days for their Australian visit. On day sails, you can try your hand at helming the ship and setting the sails, and enjoy freshly- cooked food straight from the galley. Children from as young as 12 can join in, making it a great day out for families.
For more information or to book a place on board, log onto
1-8 September 13-22 September 24 Sept – 4 Oct Adelaide to Melbourne Melbourne to Hobart Hobart to Sydney 8 days, $1,746 10 days, $2,038 11 days, $2,257
8-27 October 27 Oct-5 November 8-17 November Tall ships race, Sydney Auckland to Wellington Wellington to Nelson 20 days, $4,538 10 days, $2,114 10 days, $2,114
18-27 November 28 Nov – 6 December 15 Dec – 12 February Nelson to Auckland, Auckland return, around Auckland to Ushuaia, explore Marlborough the coast of North Island Argentina Sound, 10 days, $2,114 9 days, $1,962 $7,225
Polio NSW Inc Network News – Issue 87 – September 2013 Page 9
By Gary and Barbara Fuller, Support Group Liaison Officers
One of the perks of being a member of Polio NSW is that you are eligible to join one or two, or more if you like, of the twenty-two Polio Support Groups that have been established around New South Wales – and it is free.
One of our groups, The Hunter Polio Support Group, which meets at Toronto, celebrated its 21st Birthday on the 4 th September 2013.
Members of the Polio Support Groups have a good couple of social hours, generally once a month, with people who have had a like life experience, they join together to have a talk on what they have been doing lately and tend to help each other. You are not expected to attend each meeting. If you miss one or two or even ten meetings you are just as welcome when they see you again, as if you had attended each and every meeting.
Each Polio Support Group is run by a Convenor; you have to have someone to sit at the top of the table and record the meeting attendance record and organise the regular meetings places, and sometimes the Convenor is assisted by a deputy – that is generally all there is to it. The format is usually a relaxed and informal meeting.
At the moment we need a Convenor for the Dubbo Polio Support Group and more urgently the Nepean Polio Support Group (Penrith). So do we have a member of Polio NSW out there who could fill either of these positions? Remembering that you will have the support of the Committee of Polio NSW, the Polio NSW staff at Parramatta, and the Polio Support Group Liaison Officers Gary and Barbara Fuller. You can get in touch with Gary and Barbara at:-
Address: 394 Woolooware Road, Burraneer NSW 2230 (write or come and see us) Telephone: 02 9523 2428 (has a good answering machine at all times) Email: [email protected]
POLIO SUPPORT GROUP MEETING LOCATIONS—2013-2014 (as at 8 September 2013)
ACT MEETS: 2:00 pm at Pearce Community Centre, Collett Street, Pearce 1st Saturday of every 2 nd month, commencing February CONVENOR: Brian Wilson 02 6255 0875
ALBURY/WODONGA MEETS: Lunch on Sunday, at least four times a year Commercial Club, Albury CONVENOR: Margaret Bennie 02 6021 5568
BANKSTOWN MEETS: does not currently meet **WE NEED MEMBERS** CONVENOR: Pam Solomon 02 9773 7679
Page 10 Network News – Issue 87 – September 2013 Polio NSW Inc CANTERBURY/MARRICKVILLE MEETS: 12 noon at Canterbury-Bankstown Leagues Club 26 Bridge Street, Belmore – third Wednesday each month, Mar to Nov CONVENOR: Maura Outterside 02 9718 5803
CENTRAL COAST MEETS: 10 am to 12 noon at Kincumber Neighbourhood Centre Kincumber Street, Kincumber – 1 st Saturday each month CONVENOR: Wayne Woolley 02 4342 6145
COFFS COAST MEETS: does not currently meet ** WE NEED MEMBERS** CONVENOR: Shirley Barnett 02 6651 9098
CONDOBOLIN MEETS: does not currently meet ** WE NEED MEMBERS** CONVENOR: Bill Worthington 02 6895 2870
DUBBO MEETS: does not currently meet ** WE NEED MEMBERS** CONVENOR: **WE NEED A VOLUNTEER**
GRIFFITH MEETS: does not currently meet **WE NEED MEMBERS** CONVENOR: Dawn Beaumont-Stevens 02 6963 0880
HILLS DISTRICT MEETS: 10:30 am at West Pennant Hills Sports Club New Line Road, West Pennant Hills – 2nd Monday each month CONVENOR: Elizabeth Woods 02 9896 7818
HUNTER AREA MEETS: 10:30 am at Toronto Workers Club, James Street, Toronto 1ST Wednesday each month, commencing February CONVENOR: Wendy Chaff 02 4957 5254
INNER WEST MEETS: 11:30 am to 3:30 pm at 29 Halley Street, Five Dock 2nd Saturday each month CONVENOR: Claire Dawson 02 9713 6565
METROPOLITAN EVENING MEETS: 6:00 pm at Canterbury-Bankstown Leagues Club 26 Bridge Street, Belmore, first Tuesday each month (Mar-Nov) CONVENOR: Maura Outterside 02 9718 5803
NEPEAN MEETS: does not currently meet **WE NEED MEMBERS** CONVENOR: **WE NEED A VOLUNTEER**
Polio NSW Inc Network News – Issue 87 – September 2013 Page 11 NORTHERN BEACHES MEETS: 10:30 am at Dee Why RSL Club last Thursday every month, except December CONVENOR: Pat Featherstone 02 9970 7790
NORTHERN RIVERS MEETS: Ballina RSL in March Lismore Workers Club in June, September and December 1:30 pm to 3:00 pm on last Saturday of the month, except December CONVENOR: Rosalie Kennedy 02 6687 9640 0412 827 926
NYNGAN MEETS: does not currently meet **WE NEED MEMBERS** CONVENOR: Ruth Williamson 02 6832 1220
PORT MACQUARIE MEETS: 10:30 am to 12:00 at 9 Rivergum Drive, Port Macquarie 1ST Saturday of every 2 ND month, commencing February CONVENOR: Gail Hassall 02 6581 4759
SHOALHAVEN MEETS: 2:00 pm at Nowra Library Meeting Room, Berry Street, Nowra 3RD Friday every month CONVENOR: Dorothy Schunmann 0407 521 979
SUTHERLAND MEETS: 2:00 pm at Tradies Club, Kingsway, Gymea 1ST Wednesday every month except January CONVENOR: Ruth Hatton 02 9525 3987
WAGGA WAGGA MEETS: 11:00 am at Senior Citizens Rooms, Tarcutta Street, Wagga 2ND Wednesday February, April, June, August, October, December CONVENOR: Isabel Thompson 02 6926 2459
WOLLONGONG MEETS: 12 noon at Illawarra Yacht Club, Northcliffe Drive, Warrawong 2ND Friday every 2 ND month, commencing February CONVENOR: Dorothy Robinson 02 4229 6221
There are also five Regional Representatives who give local assistance, situated in:
ARMIDALE BLAYNEY/COWRA MUDGEE ORANGE/BATHURST URALLA
Not everyone lives close enough to these twenty-two established Polio Support Group locations, so if you are interested in establishing a new Polio Support Group in your suburb, town or city please get in touch with Gary and Barbara Fuller and we can see just what is possible, we can only try. You are also welcome to get in touch with any Group to arrange a visit whilst on your travels around NSW.
So get to and enjoy a few hours with some fellow members of Polio NSW at one of these Polio Support Groups. Gary and Barbara Fuller guarantee you will enjoy these little interludes from your daily grind, as much as they do.
Page 12 Network News – Issue 87 – September 2013 Polio NSW Inc
By Susan Ellis, Seminar Co-ordinator It has taken a great deal of time and effort to finally be able to provide you with this report. Gillian Thomas has spent many, many hours editing the video, recorded on the day by Peter Garde, and has successfully uploaded it onto our Polio NSW website. The following is only part of Dr Nolan’s first presentation and the remainder, which covers the ageing process and falls, will appear in a following newsletter along with his second session titled, “Cough, Spit and Breathlessness”.
Dr. Nolan is a General Physician at Toowoomba Hospital, Queensland, as well as a Clinical Associate Professor of Medicine at the Rural Clinical School, University of Queensland. He has been working with polio survivors for a number o f years and has a particular interest in respiratory problems in the post-polio community.
The video of Dr Nolan’s talks, together with copies of his slides, are now available online on the Polio NSW website . Visit < www.polionsw.org.au/seminar/nolan > to access the material.
Post-Polio Syndrome – An Orphan Disease
Dr Nolan claims that he is not an expert in anything in particular and his involvement with polio is something that has come about through a series of events that occurred when he was training in Western Australia where he had the good fortune of working with some people involved in breathlessness evaluation who worked with the polio network in Western Australia.
Toowoomba Hospital has a medical school and has a program called The Community Partners Program. People with chronic illness or disability come in to help the students learn about their disease, for example, polio, and the students get to examine these patients.
Polio has been around for 3,000 years, there is evidence in Babylonian records stating withered limbs occurring after being struck down virtually overnight.
It is a virus that causes the disease. At the time that we would have been infected 90-95% of our peers would have also been infected but with only asymptomatic or mild flu-like symptoms. The virus is purely a human virus not transmitted from other species, taken through the mouth as an enteric illness and then spreads to the nervous system where there appear to be specific receptors for the viral sheath or wall which then process it into the nervous tissue. Why would it be that only 1-2% of people who got infected actually developed the disease? We understand now that we have a genetic system in our body which influences how we respond to disease; it was your particular genetic makeup that increased your susceptibility to this type of response from the virus.
Dr Nolan has performed a post mortem on a polio patient who died of respiratory disease. He found that the focus of the disease is in the anterior motor horn of the spinal cord affecting the anterior motor horn cells that provide stimulus and supply the nerves. The nerve cells were either diseased or dead which resulted in causing muscle weakness.
Dr Nolan first met up with polio as a medical student when he found that one of his fellow medical students had had polio and experienced hand and spinal problems.
Polio NSW Inc Network News – Issue 87 – September 2013 Page 13
The disease can affect multiple levels in very characteristic presentations (as above) but also the mid brain, cerebrum and thalamus can be affected contrary to what some modern practitioners would say; and this probably explains a lot of things that remain poorly explained such as difficulties with blood pressure and maintenance of temperature and other issues which are clearly not to do with musculature control but are more to do with autonomic processing issues within the body.
Elizabeth Kenny came from a village south of Toowoomba in Nobby and practised in a clinic at St Vincent’s Hospital in Toowoomba. She had the foresight to see that the old approach by the orthopaedic surgeons of just plastering and immobilising was not going to get the maximum function and that early mobility and stretching using hot and cold compresses was going to lead to a better outcome and a functional recovery. There is a little message there, that we might have to relearn and rethink, that immobilising a polio limb is not always the best thing to do. And similarly immobilising our entire body as we age is not always the best thing to do. “ If you don’t use it you lose it ” is still important today, but remember, everything in moderation.
Page 14 Network News – Issue 87 – September 2013 Polio NSW Inc Dr Nolan next met up with polio survivors when he went to Western Australia where he met a polio patient who was in a ventilator and still being looked after by the same doctor after 35 years. The problem of ventilation was a big issue in acute and subacute polio and most hospitals had large centres for negative pressure ventilation and this was the advent of intensive care. It was polio that led to the development of artificial ventilation and subsequently the whole development and expansion of the specialty of intensive care.
Historic Incidence of acute polio in Australia Polio was an endemic disease (during 1930-40s), then post war in epidemic proportions, then with a combination of things including changes in general social hygiene at the time but also the vaccination programs, it eventually disappeared during 1960s.
Dr Nolan did see two cases of acute poliomyelitis whilst working overseas in South East Asia but none in Australia’s post-vaccination era.
With a dearth of accurate records of the number of people who contracted polio in Australia, the chart above is drawn from data now being collected by the Australian Polio Register (visit
Post-Polio Syndrome an Orphan Disease
Once our experience with the disease was initially dealt with we were immersed back into normal family life and then went through a process of normalisation. In this day and age if you were exposed to something bad you would have been seen by a therapist who would have debriefed you, supported you and helped you in your re-immersion. But that didn’t happen in your era, you just had the disease and then you went home!
The mean period of hospitalisation was 26 months – for some it was 2-4 years, or 2 or 3 or 4 weeks. A lot had to depend on the resources of the family, medical staff, hospital resources, where you lived etc.
Many outside of the family never knew that you had had polio, sometimes they didn’t want anyone to know out of embarrassment; sometimes it was just that they wanted to re- assimilate you back into life. Then the disease disappeared and the community forgot about it really quickly. Medical science, except for epidemiologists and public health physicians, virtually forgot about the disease.
So a lot of what polio survivors did was of incredible courage and stamina. For most of us, we just soldiered on.
Dr Nolan met another polio survivor in Perth who had a useless right arm with no function at all; she worked full-time as a jeweller’s assistant for 30 years and her employer never knew that she couldn’t use her right arm. Dr Nolan thought that many in the room could tell him many more such magnificent stories.
Polio NSW Inc Network News – Issue 87 – September 2013 Page 15 Why is Post-Polio an orphan disease?
It has no other next of kin, there is no one else out there who is similar, it is a very unique disease, and there is no other disease that causes polio apart from polio. Secondly, the memory has virtually disappeared, so the medical practitioners who were aware of this acute illness are now passed on. The medical profession has been somewhat challenged and many have pooh-poohed the whole process and have said “well I don’t think it exists, that it can’t exist because it’s not in my books, I didn’t hear or learn about it so it can’t be ”.
As a result of that there is this process of being dispossessed by the health care system and it is something that polio survivors have been fully aware of and have been campaigning for actively and still have an ongoing process to address.
So many who did suffer from polio are no longer here now though there are still well over 3,000 people throughout Australia that are actively involved in polio support groups; we know that a lot have passed away, some from preventable causes.
We do know, from an article published in a neurological book in 1957, that in 1950s centres were seeing people with late effects problems, for example, PPS, pharyngeal problems (swallowing problems) as well as upper airway function during sleep.
It took some time before it was recognised that there was a latency period between the onset of disease, the maximum neurological recovery and then later senescence, a process of change as we age. There is very strong evidence to show that the majority of people with previous polio show changes in their muscular systems earlier and at a greater rate than aged matched controls.
In aged care medicine, there is a term called homeostenosis, we get narrowed in as we age, we get corralled, it’s both a physical and social phenomena that is real, that we find ourselves less capable and our social environment starts to restrict us, for example, issues of public transport, of getting into public buildings etc.
Page 16 Network News – Issue 87 – September 2013 Polio NSW Inc
In order to include the Q&A session in this issue, and due to space constraints, the remainder of this first presentation will appear in our next newsletter. I did however want to include Dr Nolan’s medical evaluation list which follows here. It is typical of his patients’ yearly one-hour assessment.
A typical evaluation consisted of seven components:
1. a detailed medical history with special attention to current health problems as well as the extent of initial involvement from polio, the period of recovery, the duration of neurologic and functional stability, and the time of onset of new health problems; 2. a physical exam with special emphasis on assessing the musculoskeletal and nervous systems; 3. an electromyogram (EMG) and nerve conduction study of selected muscles and nerves; 4. a biomechanical and functional evaluation with special attention to orthotic and adaptive equipment needs; 5. a basic panel of screening laboratory tests that were supplemented with additional x- rays and laboratory studies as indicated by the history and physical examination; 6. a psychosocial assessment; and 7. referral to other members of the rehabilitation team or other medical specialists as needed.
Q&A Session:
“During your talk in reference to Sister Kenny you mentioned “If you don’t use it you lose it”. What is your general philosophy on that topic?”
THE PROBLEM OF EXERCISE When, Where, How, Why?
We know from work in other areas of disability such as advanced osteoporosis that physical activity is of proven benefit and can be modified to people who can’t use a treadmill, bicycle or swimming in a pool; and so doing chair exercises as a maintenance process can be designed at an individual level to help with the prevention of osteoporosis and there is a close interaction there with maintenance of muscle function.
Exercise Physiology in Post-Polio
Polio patients have a reduced exercise capacity.
• Lower anaerobic threshold (<40%) . This means that the point at which your muscles start to make acid occurs much earlier, so an average sedentary person over the age of 60 starts to make acid when they get to 40% of their maximum work load, with polios that occurs at about 20% of maximum workload. That often is a factor leading to the post-exercise fatigue phenomena and the post-exercise pain phenomena. So that has to be understood when designing an exercise program.
• Low VO 2 Max (<80% predicted). We know that polio survivors’ ability for their muscles to take up oxygen (VO 2 max) is diminished. • We know however it can be improved and that exercise capacity measured as oxygen uptake can be increased by at least 20% by a 10-12 week gentle program of retraining conditioning. (Jones et al JAMA 1989;261:3255-8)
Polio NSW Inc Network News – Issue 87 – September 2013 Page 17 • To achieve even this 80% level of activity the average polio survivor uses excessive ventilation because that is how we get rid of the acid, we blow it off; the acid is converted to carbonic acid and we get rid of it by blowing off the carbon dioxide. So what drives a lot of our excessive ventilation during exercise is the removal of acid from the body.
Rehabilitation (in terms of exercise) in Post-Polio
GOALS:
• Restorative: Can we improve • Preventative: Can we prevent decline • Maintenance: If we can restore function can we then maintain it, can we try and hold that level of function as long as we can, understanding that all of us do fade with age. It is going to happen we can’t stop that but what we want to do is maintain quality of life and function for as long as possible. We can’t do the impossible. • Individual specific exercises with intermittent review.
Specific exercise strategies
• Diaphragmatic breathing exercises: There are ways we can retrain breathing, even if your diaphragm wasn’t involved with polio in the first instance the breathing pattern of polio survivors is often impaired and they can be taught to enhance their breathing by using a different breathing mechanism. • Relaxation exercises for fibromyalgia: For people with pain, particularly with post exercise pain, there needs to be a wind-down process just as much as a wind-up process to prevent the development of a lot of myalgic pain. • Soft tissue mobilisation and stretching: We also need to utilise a lot of physiotherapy technique which overlap to chiropractory etc and that is mobilisation and stretching because we generally are using things differently and often they are being overworked. The limb would become functional if there were anything more than 10% of neurons left, that a limb can get some function back even with just 10% of neurons left behind, but surely using that limb for 20-30 years is going to have some delayed impact and we think that this is part of the whole genesis of the post-polio sequelae. Those areas affected but with still more than 10% of neurons will fade with age more than a normal anterior neuron. • Isometric exercise held for 6 seconds and rested for 6 seconds with 6 repetitions. • Isotonic exercise with small weights. • Aerobic exercise conditioning building up to 15 mins at 50% VO2 max 3 times/week. Use a variety of all 3 types of exercises, must be personalised, structured and you must have rest days. Do not go all out for an hour every day; that can lead to disasters. So look at a program of no more than 3 days per week building up to 30-35 minutes per day, 15-20 minutes warm up and 15-20 minutes warm down on those 3 days. It has to be individualised. There is no generic recipe for exercise.
Chronic Fatigue
This is NOT weakness, this is fatigue. Dr Nolan was involved with a survey of 330 Western Australian polio patients and found 75% of polio survivors report fatigue (our Secretary, Merle Thompson, reported the figure in the Polio NSW survey was 80%). Fatigue is very disabling but cannot always be explained. Dr Nolan does not know the causes of chronic fatigue but says that chronic fatigue is generally defined as fatigue that:
Page 18 Network News – Issue 87 – September 2013 Polio NSW Inc • is persistent for more than 6 months, • is of new or definite onset, (didn’t exist before), • is not substantially alleviated by rest, and • results in substantial reduction in previous levels of occupational, social, educational or personal activities.
There is a research process with COQ10 happening at the moment, one of the specific outcomes is for it to alleviate fatigue. Fatigue appears to happen at a subcellular level, as if the cells go on a holiday. Dr Nolan said he couldn’t provide any clear answers. So his approach to the management of chronic fatigue is to try and look at other subgroups of symptoms (listed below) and see if there is any management strategy for those.
Patient specific goal setting
• Improving activities of daily living. • Vocational rehabilitation. • Improving strength and mobility. • Increasing exercise tolerance. • Relieving pain. This might have an impact on the symptom of fatigue and is worth treating. • Management of anxiety and depression. This also might be worth treating; I am not saying that it is the cause of fatigue but that it might help in the overall management of the symptom of fatigue. • Maintenance of cognitive function.
“Why are medical specialists reluctant to advise on any treatments outside their field that might be very useful for polio survivors, for example, osteopaths, hydrotherapy?”
Unfortunately, medicine is becoming increasingly compartmentalised and the different compartments often don’t talk to each other that well. Orthopaedic surgeons are increasingly fitting into that category. There are too few doctors who are too busy; hopefully with more doctors and a better balance they will have more time to listen. Hopefully, we will see more resources in the areas of rehabilitation, aged care and pain management.
There is a problem at an education level; in medical school there is no teaching on allied health or alternative therapy strategies, for example, acupuncture, hydrotherapy. The problem is that students are not well informed. Dr Nolan agreed it is amazing the outcomes that can be achieved from non-surgical therapies.
The best health outcome is when the practitioner and the patient work together as partners. The problem is finding the person who is willing to be the partner with you from the health care profession. For those patients that Dr Nolan sees with chronic illness like polio, at the end of each year he gives them a piece of paper called the Shared Care Partnership Action Plan . He tells them that at their next consultation to bring this back to him stating what they are going to do for their care in the next 12 months and he tells them what role he can take in this process. This is empowering the patient to be part of the process. He listens to what they are saying, because in the Plan he asks them to tell him what their concerns are and to prioritise them. Some of their issues he might not have even asked about, for example, issues of sexuality or incontinence. These are sometimes issues that are real but are not on the medical problem list and doctors tend to overlook their impact but they have just as powerful an impact as the difficulty of walking up to the shops. The medical profession needs better education and you can help facilitate this role, for example, with partnerships with Medicare Locals which will run the education programs for GPs. Polio NSW Inc Network News – Issue 87 – September 2013 Page 19
. + . + . + . +
We have received the following email from David Corby who is seeking information about his late brother Robert from Cootamundra. Can anyone help with David’s enquiry?
I wonder if you might be able to help me.
I had a brother who was born in 1944 and died in 1959. I have always assumed that Robert had polio. Some of my relatives have the same view but others don’t. Unfortunately both my parents have long gone and Robert’s situation was never discussed. I was almost 8 years old when Robert passed away … so quite young.
A cousin, who would have been quite close to our family when Robert was born, said that my Mother had a very difficult childbirth with Robert and his physical condition was caused by that. Robert died in an ambulance, at Gunning, being transported from Cootamundra (home town) to Sydney. His death certificate says that the cause of death was: “Cerebral Birth Injury” … so maybe not polio?
Robert did attend Royal Alexandra Hospital at Collaroy in 1948 … see attached photo. From “Polio Particles 13” by Mary Westbrook it mentions that Collaroy was used for polio patients.
I have also attached a couple of other photos of Robert … one with myself. I do recall Robert “wearing” calipers on his legs.
Do you have any thoughts as to whether or not he might have had polio? Maybe this is a question that I will never know the answer to.
Many thanks
David Corby Unit 87 10 Bourton Road MERRIMAC QLD 4226 Phone: 07 5559 1095 Mobile: 0428 260 517
Robert Corby at Collaroy
David and Robert Corby Robert Corby
Page 20 Network News – Issue 87 – September 2013 Polio NSW Inc
Annual General Meeting and Seminar Saturday Burwood RSL Club 30 November Seminar Presenter: Anne Reddacliff 96 Shaftesbury Road The Black Dog Institute AGM: 11 am Burwood Seminar: 1 pm Seminar Topic: Breaking Down Depression and Building Resilience Polio NSW will host Polio Australia’s Thursday 8 to St Joseph’s Baulkham 2014 Polio Health and Wellness Retreat Sunday 11 Hills Centre for May 2014 Reflective Living Email
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, Wendy Davies, Barbara Fuller, Gary Fuller, Alice Smart and John Tierney
Office staff: George, Carlie and Fatma 02 9890 0946 [email protected] Volunteers: Nola and John 02 9890 0953 Susan Ellis Seminar Co-ordinator [email protected] 02 9487 3094 Gary & Barbara Fuller Support Group Liaison [email protected] 02 9523 2428 Alan Cameron Website Webmaster [email protected] 0407 404 641 Mary Westbrook Q’s about polio & PPS [email protected] --- Nola Buck/Susan Ellis Co-editors Network News [email protected]
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 87 – September 2013 Page 21
The Post-Polio Network (NSW) Inc was formed in 1989 by polio survivors for polio survivors. In 2011 the Network changed its name to Polio NSW Inc but our services for polio survivors remain unchanged.
Polio NSW is a self-help, self-funded organisation governed entirely by volunteers. Polio NSW provides information about polio’s late effects and supports those who may be affected now or in the future. We conduct regular Seminars and Conferences, publish Network News , foster the establishment of regional Support Groups throughout NSW and the ACT, and maintain a comprehensive website.
Polio survivors, their family members and friends are all welcome to join Polio NSW, as are health professionals and anyone else who supports our aims. Membership provides information and support that can maximise the physical and psychological quality of life of polio survivors and their families.
If you live in Australia, we can post you a free Information Kit and Membership Application Form. The Kit includes a copy of our booklet Helping Polio Survivors Live Successfully with the Late Effects of Polio which explains the late effects of polio and details the many benefits of Network membership. This booklet can be emailed to those enquiring from overseas.
The annual membership subscription (payable in Australian dollars only) is $10 not employed or $20 employed. On first joining, new members also pay a $5 once-off joining fee. Those initially joining between 1 April and 30 June in any year are deemed to be financial until 30 June the following year. Membership renewal is due on 1 July each year and members are alerted to their financial status with each Network mailing. Over 80% of Polio NSW’s income, which is used to provide its services, comes from membership subscriptions and donations.
On joining Polio NSW, members are issued with free resources including a brochure Hospital, Medical And Dental Care For The Post-Polio Patient – A Handy Reference, and a Medical Alert Card which can be carried in the wallet.
Polio NSW also stocks various publications which further describe the late effects of polio and their management. The prices quoted below are for members and postage is included. To order, just write to us – please make cheques / money orders payable to Polio NSW Inc.
Books etc (❊❊❊ indicates Post-Polio Network publication) Size Cost Managing Post-Polio: A Guide to Living and Aging Well with Post-Polio Syndrome $40.00 288 pages Second Edition Edited by Lauro S Halstead MD ( see description below @) incl 10% GST A Practical Approach to the Late Effects of Polio 39 pages $2.50 Charlotte Leboeuf ❊ Living with the Late Effects of Polio 170 pages $29.00 Conference Proceedings, edited by Gillian Thomas ❊ Polio – A Challenge for Life – The Impact of Late Effects 54 pages $12.00 Report: Survey of Members, Merle Thompson ❊ Post-Polio Network - Helping Polio Survivors Live Successfully with $3.00 12 pages the Late Effects of Polio , Dr Mary Westbrook 1st copy free
Polio NSW has for sale a four-colour enamelled badge featuring a stunning polio $5.00 virus design. The badges are suitable for men or women. Each badge comes 23 mm x plus $1 with a description of the virus and information about Polio NSW. Not only is the 23 mm postage badge a great fashion statement, it is an innovative way to promote Polio NSW.
@ Managing Post-Polio: A Guide to Living and Aging Well with Post-Polio Syndrome (Second Edition) The second edition was published in 2006. Editor Lauro Halstead writes about the rationale for this edition: As with the first edition of Managing Post-Polio , the major goal of this volume is to summarize the best advice available to diagnose and manage PPS in an easy-to-read, authoritative format for polio survivors, their families, and friends, as well as for health care professionals. The majority of contributors to this book are either polio survivors or experts who have worked closely with polios in clinical settings.
Another important objective of the earlier edition was to reach as wide an audience as possible – an objective that far exceeded our expectations with more than 15,000 copies in circulation. As news about PPS spread, the demand for more information continued to grow. This new edition is in response to that continued demand for information. Also, we have added a new theme to this edition – aging with disability, as once again polio survivors are “pioneers” – the first large group with a chronic physical disability to undergo aging. Since the initial edition, we are all nearly 10 years older, and, hopefully wiser. Quite possibly, we are also more disabled and, therefore, more challenged. It is my hope that this book will help guide us as we journey along this new path together.
Audio tapes of many of the Network Seminars and Conferences held since 1989 are also available at reasonable prices. For further details please contact the Office.
Volume 3, Issue 2 Polio Oz News
J u l y 2 0 1 3 — Winter Edition
The 2013 “We’re Still Here!” Pre - Election Campaign by Mary-ann Liethof However, in true polio style, here’ for 65 years and older Editor they soldiered on! polio survivors. Senators Mitch Fifield (Liberal), Rachel Siewert They say that timing is As did 37 Campaign Heroes (Greens), and Claire Moore everything, and Polio Australia made up of 18 polio survivors (Australian Labor Party) certainly picked an historical and 19 family members and proffered a range of opinions, day to visit Parliament House! friends who had made the trek but all recognised that the 65 Alas, on Wednesday the 26th of to Parliament House, Canberra, year cut off for Program June, the corridors were not which is an historical day in its eligibility was unfair for a large abuzz with word that the post- own right. percentage of Australians, but polio campaigners were there - They were made up of 6 ACT- that there was still the rather that the country was based Campaign Heroes, 20 possibility for changes to be about to have a leadership from New South Wales, 3 from made over the next 6 years it change on that very day, of all Queensland, 6 from Victoria, will take for “DisabilityCare days! and 1 who came all the way Australia” to roll out across And if that wasn’t problematic from Western Australia. Australia. enough, our President and The day commenced with a Following the Morning Tea Campaign Leader, Dr John Morning Tea Forum with a bi- Forum, most of the Campaign Tierney, and Vice President, partisan panel of 3 Senators Heroes met with 9 Gillian Thomas, were both discussing the National parliamentarians who offered suffering with symptoms akin to Disability Insurance Scheme - their time to listen to the issues Spanish ‘Flu, so were not feeling now named “DisabilityCare affecting Australia’s polio as ‘bright’ as they could have. Australia” - and ‘where to from survivors. Cont’d P 4
2013 “We’re Still Here!” Campaign Heroes
National Patron: Dr John Tierney, PhD, OAM Page 2
Polio Oz News
From the President Polio Australia Inc Representing polio survivors Fellow polio survivors, the last few months have throughout Australia been very busy at Polio Australia, culminating in our most effective visit yet to Canberra, judging by Suite 119C, 89 High Street the outcomes of the work of the delegation to date. Kew Victoria 3101 I would particularly like to thank our 37 campaign PO Box 500 heroes who trekked to Canberra in the dead of Kew East Victoria 3102 Phone: +61 3 9016 7678 winter, at their own expense, to join in the lobbying E-mail: [email protected] effort which included their own meetings in the Website: www.polioaustralia.org.au private offices of the members and senators. A special thanks to Mary-ann who displayed her usual Contacts Dr John Tierney dedication and flair in bringing everything together President on the day. President - John Tierney Our delegation was highly visible around the Parliament and in [email protected] Question Time in our "We’re Still Here!” T-shirts. We were there when Vice President - Gillian Thomas the Government changed Prime Ministers, so a very dramatic day all [email protected] round. Mary-ann has put photos and information about the lobbying day elsewhere in the newsletter and Gillian (as Webmaster) has been Secretary - Jenny Jones working on Polio Australia’s “We’re Still Here” website. [email protected] Cont’d P 3 From the Editor Treasurer - Brett Howard Well, I certainly have a Most of us now know [email protected] bumper edition for you that DisabilityCare
to browse through this Australia (the National National Program Manager Mary-ann Liethof month. This is largely Disability Insurance [email protected] due to the fact that I Scheme) was launched was unable to get any e in 4 regions on the 1st of -news together last July, and you can read month with so much more about that on P 7. Inside this issue: energy going into organising the On P 8 you can read how “We’re Still Here!” Pre- 1 Mary-ann Liethof campaign, and the our Vice President, Election Campaign Editor Retreat before that . . . Gillian Thomas, was invited to a special DisabilityCare Australia 7 As the only paid staff Unless otherwise edition of Q&A featuring stated, the articles in member already doing PA Questions Bill Gates 8 Bill Gates. Polio Oz News may be the ‘impossible’, reprinted provided performing miracles just On P 21 you can read Thanks Neil! 9 that they are takes that little bit the next in our series on Supporting Polio Australia 10 reproduced in full longer! (including any state based networks -
Health & Wellness Retreat 12 references) and the In this edition of “Polio Polio Network Victoria. author, the source and Touched by Polio 19 Polio Australia Inc are Oz News”, you will see And much, much more! acknowledged in full. that Polio Australia has So just take your time Walk With Me 20 Articles may not be certainly been keeping and enjoy! edited or summarised busy, as have all the Polio Network Victoria 21 without the prior written approval of ‘ R e t r e a t e r s ’ a n d My Story 22 Polio Australia. The ‘Campaign Heroes’. Change will not come views expressed in My Treatment in Hobart 24 We have also included if we wait for some this publication are other person or some not necessarily those the inspiring story of Access All Areas 25 of Polio Australia, and Elizabeth Edmondson (P other time. Reading 26 any products, services 22), a Western We are the ones we've or treatments been waiting for. Fears Over Modern Polio 28 Australian Paralympian described are not We are the change necessarily endorsed who joined in on both Polio Alerts 30 or recommended by that we seek. the aforementioned Polio Australia. Polio This Week 30 activities. ~ Barack Obama ~ Page 3
Polio Oz News
From the President ( C o n t ’ d )
On this trip, the Parliament has moved from just Our central message to the MPs was that the listening to what we have had to say, to actually "one size fits all" competitive grant funding doing something. Thanks to the excellent and model does not work for meeting the needs of comprehensive handout that Mary-ann put polio survivors. We need specific purpose together, the penny stated to drop with a funding for programs and publicity that will number of MPs. We asked Members and lead to polio survivors better managing Senators to put a story and photos in their their own condition. While we are all waiting electorate newsletters which go out to their for government funding to arrive, we will have to 80,000 constituents. We also asked them to continue to raise it ourselves. publicise the Australian Polio Register and to add Our next big happening that you can all in the link to the Polio Australia website. Quite a participate in is the "Walk with Me" events, number have promised to do this. details of which can be seen on P 18 of this We now have 65 Parliamentary Friends of Polio newsletter. Last year we joined in as a trial and Survivors. These Members and Senators have found that Fran Henke and I could raise $3,770 either spoken to our delegation, attended one of dollars between us. Imagine what one hundred our functions, or spoken about the needs of polio of us could raise! It only involves a short walk on survivors in the Parliament. Also after this visit, a stick (or in a wheelchair) and we encourage two of our Parliamentary Patrons have had follow participants to bring family and friends with up meetings with the Health Minister and the them. It is not physically onerous and really a lot Shadow Health Minister on the needs of polio of fun. Try and find 10 to 50 of your family and survivors. This is pure gold. friends to sponsor your walk and between us we can help raise a lot of money for our cause. I would like to single out two of our Federal Parliamentary Patrons for special mention. Again, Take care, Mark Coulton MP (NSW), National Party Chief John Whip, was a tower of strength in helping with arrangements on the day. The Hon Greg Hunt MP Dr John Tierney OAM (Lib, Victoria), Shadow Minister for the President and National Patron Environment, helped spread the message in a Polio Australia speech to the Parliament, where he called on MPs to take a bipartisan approach to meeting the needs of polio survivors.
John Tierney (left) leading some of the campaigners through Parliament corridors
Campaigners pinning their leaves to the “Polio Family Tree” (l-r) David Luck, Alan Tudge MP, and Joan Smith Page 4
Volume 3, Issue 2
“We’re Still Here!” Pre - Election Campaign ( C o n t ’ d )
Everyone was provided with a In 2011, Polio Australia unsuccessfully applied for two of the specific, budgeted, Proposal on Department of Health and Ageing’s (DoHA) Flexible Funding what Polio Australia is asking grants, although no further grants have been released since this from the government. time. Unfortunately, the Late Effects of Polio do not fit into any of DoHA’s programs or initiatives, so there are no other appropriate In a follow-up letter to all the tender submissions available to apply for.” parliamentarians Polio Australia Campaigners meet with in Polio Australia thanks the following parliamentarians and Advisors Canberra, thanking them for for their time in Canberra: their time, the following comments were made: Morning Tea Forum Panel
“Polio Australia believes that if bi-partisan support can be agreed upon for the Australian government to commit AU$130 million (see P 8) to fund the very worthy cause of polio eradication, dedicated funding must also be made available to support our own polio survivors – understanding that this support is really only required for a limited time.
Unlike many other chronic conditions, it needs to be reiterated that Polio Australia is the only organisation providing services for polio survivors, yet there appears to be no mechanism for these services to be funded through federal government.
(l - r) Senator Mitch Fifield, Senator Rachel Siewert, Senator Claire Moore
Parliamentary Patrons Mark Coulton MP (National, NSW) Jill Hall MP (Australian Labor Party, NSW) The Hon Greg Hunt MP (Liberal, Vic) Senator Rachel Siewart (Greens, WA) (newly invited after unsuccessfully proposing amendments to the NDIS Bill to include 65 yo)
Parliamentarians Campaigners Met With (in addition to Parliamentary Patrons) The Hon Bronwyn Bishop MP (Lib, NSW) The Hon Russell Broadbent MP (Lib, Vic) Tom Fleming, Senior Advisor to the Hon Peter Dutton MP (Lib, Qld) The Hon Joel Fitzgibbon MP (ALP, NSW) Josh Frydenberg MP (Lib, Vic) Michael Keenan MP (Lib, WA) The Hon Richard Marles MP (ALP, Vic) Sandi Gatt, Advisor to Senator the Hon Jan McLucas (ALP, Qld) Scott Morrison MP (ALP, NSW) Polio Family Tree The Hon Amanda Rishworth MP (ALP, SA) Page 5
Polio Oz News
“We’re Still Here!” Pre - Election Campaign ( C o n t ’ d )
The Hon Bruce Scott MP (Nat, Qld) motif with the words “I am a Alan Tudge MP (Lib, Vic) polio survivor and I need Senator Anne Urquhart (ALP, Tas) po lio- specific services NOW!”. Additional Parliamentarians Who Attended Morning Tea Karen Andrews MP (Lib, Qld) A few of these T-shirts are left Anna Burke MP (ALP, Vic) over in Large, X-Large, and 2X- Steve Georganas MP (ALP, SA) Large, and can be purchased Philip Ruddock MP (Lib, NSW) from Polio Australia for $25.00 Kelvin Thomson MP (ALP, Vic) each (which was the price Polio Australian paid for them) plus $5.00 postage and handling. Email Mary-ann for availability and payment details.
There was a flurry of additional Anna Burke MP stories posted onto the campaign-specific “We’re Still Here!” website created by the talented Gillian Thomas leading up to the day, and any media stories have also been linked. Polio Australia intends to use this website for additional stories, so keep them coming in.
The following emails from Campaigners provide their Steve Georganas MP Jill Hall MP reflections on the day:
From Nola and John Buck (NSW) “John and I really enjoyed the day and for me it was a success. It was obviously a very busy day in Parliament, yet the Members found time to come and see us, and surely that commitment from them is due to all the lobbying you, Gillian and John have done on behalf of Polio Australia. I was really impressed with Claire Moore saying that the Committee is aware that the decision to exclude people with disability from DisabilityCare when it is fully functional will have to be Philip Ruddock MP re-thought. This sentiment was also expressed by the Human During this visit we also wanted to acknowledge the wider circle of Rights Commission President people who are “Still Here!” with our polio survivors. As such, all [Professor Gillian Triggs] on Campaign Heroes were issued with an orange card ‘leaf’ to hang ABC Lateline on Thursday night. on our “Polio Family Tree”, as well as T-shirts depicting the leaf I feel all your hard work is starting to pay off and as Greg Hunt said, we need to continue Page 6
Volume 3, Issue 2
“We’re Still Here!” Pre - Election Campaign ( C o n t ’ d ) to make a lot of noise. I'm not that funding will be found from Polio survivors and their too sure about success in somewhere for you to continue families came from all over relation to funding for Polio in your role – no doubt you are Australia to unite for this Australia, but hopefully one of busy on that front as well.” campaign and to make our the funding avenues mentioned voices heard – not just for by one of the MPs will give us I have been asked by several ourselves, but for the hundreds an opportunity to obtain people if I think this campaign of thousands of other polio funding.” was ‘successful’. All I can say is survivors out there. Remember, that, in spite of the challenge of we are all part of a much bigger From Rohan Clark (ACT) competing with a leadership picture and, as Rohan said, it’s “Congratulations on a wonderful change on the day, we had the squeaky wheel that gets the event yesterday. Your significant interest from a oil! organisation and preparation number of additional were terrific. The Polio Family parliamentarians we haven’t So, a special “thank you” goes Tree was a great idea and met before. I don’t think we to all the Campaign Heroes who looked great. And it was should ever underestimate the made the significant physical practical – portable and power you have as voters. For and financial effort to join with effective! The range of speakers example, it was amazing to see Polio Australia, and with each and attendees you had the Speaker for the House of other, to make this campaign arranged were just fantastic. Representatives, Anna Burke, worthwhile. We must continue to be a attending Morning Tea, thanks What now, you might ask? Well, “squeaky wheel”, as we must to a very staunch advocate in first we have to get through the be to get our case heard and her electorate (who was unable federal election so we can see acted upon, and your to attend Canberra herself). who’s left standing . . . We contribution to this is truly know we have bi-partisan outstanding. However, if ‘success’ is measured by a promise that support, so we hope that our Your background work Polio Australia will receive campaigning has made enough contained in the booklet, funding, then the answer is “not of an impression that when the “Proposal to Support Australia’s yet” . . . Unfortunately, our Members and Senators return Polio Survivors”, June 2013, lobbying efforts are a bit like to parliament, we can take up was just fantastic. It was clearly water dripping on a rock - where we left off and continue a lot of work, but it was worth it eventually the constant drips to make progress. and it was very well done wear it down – we hope! After And remember, YOU CAN indeed. all, it’s only been 25 years since HELP! Let your local federal we first started talking about Member know you are a polio The day went as well as it could the problems we’ve been survivor living in his/her possibly have gone. It takes having with the late effects of electorate (otherwise they skill to arrange something polio! months in advance on the same won’t see the late effects of day as a political killing! Another way to look at the polio as something they need to Seriously, the pollies may have success of this campaign is in think about), and send them a been somewhat distracted, but the opportunity to share our link to Polio Australia’s Proposal we still got our message across, stories and experiences with a so they know exactly what the and we must continue to do it. I number of MPs and Senators, issues are. am an optimist, and believe and with each other. Onwards and upwards!
Campaigners with Michael Keenan MP Greg Hunt MP Merle Thompson with Joel Fitzgibbon MP Page 7
Polio Oz News
DisabilityCare Australia
On 1 July 2013, DisabilityCare Australia achieve your goals. To get an idea about whether commenced in Tasmania for young people aged you meet the access requirements, you can use 15-24, in South Australia for children aged 0-14, My Access Checker. and in the Barwon area of Victoria and the Hunter area in NSW for people up to age 65. If you do not meet the access requirements, and you live in a launch site, DisabilityCare Australia From 1 July 2014, DisabilityCare Australia will may be able to provide you with information commence across the ACT, and the Barkly region about other supports that could be of benefit to of Northern Territory. Roll out of the full scheme you and assist in referral to these. in these states and territories, as well as Queensland, will commence progressively from DisabilityCare Australia will also work in close July 2016. partnership with local communities to improve inclusion and people with disability. The agency If you are a person with disability and you meet will also look at fostering innovation, research the access requirements you can become a and best practice to better support people with participant in the scheme. As a participant, you disability. In building awareness of disability will be able to access DisabilityCare Australia across the general community we can address community linkages and individualised planning the things that can make a difference to everyday processes to identify the reasonable and life for people with a disability, their families and necessary supports you need to enable you to carers.
Launching DisabilityCare Australia — A Cautionary Tale
The following is an excerpt from a longer article written by Tricia Malowney for ProBono Australia News - Source: www.probonoaustralia.com.au/news - 4 July 2013
DisabilityCare Australia is here but let’s not think this is all done now – nothing will change until families, politicians, the service sector and Australians with disabilities understand that we are equal partners, says systemic advocate for inclusive practices, Tricia Malowney.
“On Monday, I was fortunate to be able to attend the launch of DisabilityCare Australia at the Geelong office, followed by a reception at the Geelong Town Hall. Let me say that the first event was brilliant. It was attended by many Australians with disabilities, our families and supporters, members of the disability sector and bureaucrats and politicians who had all worked side by side at the local, state and federal level to ensure that DisabilityCare Australia became a reality.
So all of us were in fine form as we travelled to the Town Hall to continue what we thought was to be a reception to celebrate a new era in how Australians with disabilities were able to finally exercise their citizenship rights, be included in the community, and change the way we were to be treated in the future.
How wrong could we be! The event at the Town Hall was awful – it was overcrowded with not enough seating. Australians with disabilities who were not able to find their way to the front of the room were left looking at the backs of those who stood in front of us. I was lucky enough to find a seat on a table, until I was bumped so the food could be put out.” . . Continue reading full article here. Page 8
Polio Oz News
Polio Australia Questions Bill Gates
On 28th May Polio Australia was grateful to have the opportunity to be in the 900 strong audience of a special episode of the ABC TV program Q&A – An Audience with Bill Gates.
What was even more exciting for Polio Australia was the chance to ask a question of Mr Gates. Watch this video to see Gillian Thomas (pictured right top), Vice President of Polio Australia, ask Mr Gates (pictured right bottom) for strategies to “get governments to shoulder their responsibility and fund essential post-polio services”.
The video runs for 3 mins 13 seconds, but if you are unable to view the video, you download the transcript here.
Of course, Polio Australia is well aware of Mr Gates’ specific interest in and commitment to eradicating polio in developing countries, and we are under no illusion that he would be a contributor to Australia’s polio survivors. However, the question was actually aimed at our government, and appeared on national television, so that’s got to count for something! - Ed
Further Australian Support for Polio Eradication
Source: Joint Media Release - 28 May 2013 eradication. From 1912 to 1972, more than Prime Minister and Minister for Foreign Affairs 30,000 cases of paralytic poliomyelitis were reported in Australia, and a number of polio Prime Minister Julia Gillard and Foreign Minister survivors in Australia today still live with the pain Bob Carr today announced further funding to help and debilitation of post-polio syndrome. eradicate polio – a debilitating disease that continues to strike the world’s most vulnerable It was Australia’s Sir Clem Renouf who, as President of Rotary International in 1978 and people, especially children. 1979, led the international campaign to vaccinate Australia will provide $80 million over four years every child against polio. As a result of these from 2015 to 2018 to help finish the job and early efforts by Rotary, the global community achieve worldwide polio eradication. came together in 1988 to launch the Global Polio Eradication Initiative. This contribution follows a $50 million commitment to the Global Polio Eradication Since 1988, there has been a reduction in the Initiative from 2011 to 2014 announced by the number of polio cases by 99.9 per cent. Following Prime Minister at the Commonwealth Heads of the certification of India as polio-free in 2012, Government Meeting in Perth in October 2011. polio remains endemic in only Afghanistan, Pakistan and Nigeria. The world now has polio The Prime Minister and the Foreign Minister eradication within its reach. This would be the applauded the leadership shown by the Bill and second disease to be eradicated globally after Melinda Gates Foundation, the World Health small pox and a major victory for international Organization, UNICEF and Rotary International on aid and public health. polio. The Gates Foundation is contributing US$1.8 billion for the Polio Endgame Strategic The new contribution brings Australia’s total Plan 2013 - 2018, which is one-third of the total commitment to polio eradication to over $130 budget. million. Our aim is to help eradicate polio and strengthen routine immunisation. Australia has a proud history of support for polio Page 9
Volume 3, Issue 2
Thanks Neil!
(l-r) Bev, Neil and Gail Neil von Schill was a key member of Polio Australia’s ‘team’ until he suffered a series of strokes in 2011 which affected both his mobility and speech. Neil is currently living in a residential care facility in Albury, New South Wales.
To thank Neil for his years of committed service to both Polio NSW and Polio Australia, the Committee of Management decided to present Neil with a plaque acknowledging his contribution.
Margaret Bennie, long-time member of the Albury Polio Support Group which Neil founded, was asked to make this presentation on behalf of Polio Australia. She wrote the following comments regarding the presentation:
“Neil’s wife, Gail, suggested that morning is the best time for Neil as by lunch time he is rather worn out. So I went l up there before we went out to lunch. He was absolutely delighted and Gail was so pleased that Neil even smiled for the picture. Gail and her daughter, Bev, came out to lunch with the rest of our group.
Neil has been a mentor and friend for many years and is dearly missed by us all when we meet. We wish him and his family all the best.
It was a rather emotional day for us all and we would like to thank Polio Australia very much.” - Ed Page 10
Polio Oz News
Supporting Polio Australia
Polio Australia would like to thank the following individuals and organisations for their generous support from 1 January to 30 June, 2013: Hall of Fame ($1,000 plus)
Name Donations - General Jill Pickering $28,000.00 Monique Liethof $5,000.00 John Tierney $4,830.00 Bruce Livett $2,500.00 Polio SA $1,550.00 Michael Evans $1,000.00
$42,880.00 Significant Donations (up to $1,000)
Donation - General Mary Burbidge Donations in memory of Eileen Meldrum Paul Carlin David Miller J Chapman T & J Pollock H Doyle Prospect-Blair Athol Lions Club Elizabeth Edmondson Margaret Reynolds Carol Haider Beryl Rigby Lyndall Hendrickson Douglas Ryan Fran Henke Len Sheehan JMYF Enterprises Pty Ltd C G Smith Margaret Kinsella Barry & Carol Squires Knox-Yarra Ranges Post-Polio Support Group Michelle Stonehouse Stan Kosmala The Better Image Australia
Lyn Lillecrapp and a Number of Anonymous Donations
Total $4,744.40
Fundraising Campaigns Patrons Circle and Rotary Clubs of Australia
Name Donations - Patron's Circle Patron's Circle - Dr Ata Eshragi $10,000.00 Patron's Circle - Andrew Buchanan $1,000.00
$11,000.00
Name Donations - Rotary Rotary Club of Parramatta City $1,000.00 Rotary Club of Parramatta $500.00 Rotary Club of Warrandyte Donvale $250.00
$1,750.00 Page 11
Volume 3, Issue 2
Making Polio Australia Work
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:
Cheque Please make cheques out to Polio Australia Inc and post to PO Box 500, Kew East, Vic, 3102 To ensure your donation is correctly credited please click here to download, complete and then forward the donation form with your cheque
Electronic Funds Transfer Bank: Westpac Branch: Parramatta, NSW BSB: 032-078 Account Number: 555766 Account Name: Polio Australia Incorporated
To ensure your donation is correctly credited please click here to email your EFT transaction details to Polio Australia
Credit Card or PayPal Your credit card donation is securely processed through PayPal on behalf of Polio Australia. You do not need to have your own PayPal account. Simply follow the links on this page.
Bequest Include a specific bequest to benefit Polio Australia in your Will. Consider making a bequest to Polio Australia and determine the type of bequest which best suits your circumstances and wishes. Check here for details.
Thank you for investing in us to make a difference – every donation helps polio survivors
Funding Sources ~ 2010 to date ~ Page 12
Polio Oz News
Polio Health and Wellness Retreat: 18th - 21st April 2013
According to feedback received, we are very This year I was also delighted to have 2 hard pleased to report that Polio Australia’s 4th Annual working volunteers helping out, Vivienne Maxwell Polio Health and Wellness Retreat was yet and Alex Daniel. Lee O’Connell, Physiotherapist another unmitigated success, thanks to the 70 at MS Australia and Lecturer at University of SA, participants who made their way to the Stamford approached me to discuss the possibility of U of Grand in Glenelg, South Australia, and the SA students undertaking a Project based on the wonderfully generous efforts of the 40 session Retreat. Of course, I readily agreed. So in 2012, presenters, most of whom provided their services Lee recruited and supervised Vivienne and Alex, pro-bono. Many participants were also able to who were then completing their fourth year in take advantage of the 2 massage therapists, Physiotherapy. Sharon and George, who were onsite for Friday and Saturday. Under my direction, Vivienne and Alex surveyed the needs of PolioSA members in relation to the This was the most expensive Retreat we have 2013 Retreat, before exploring potential venues, held to date - primarily because we found it very session presenters, and funding sources, difficult to find an accessible venue in a pleasant resulting in the production of a substantial environment, which could accommodate 70 report. Vivienne and Alex proved to be quick and participants, in sufficient space, close to Adelaide. astute workers leading up to the Retreat, and There were still a number of ‘challenges’ with willing and able assistants for the weekend regards to accessibility (showers-over-bath in activities, where they were able to realise all standard rooms) which necessitated the hiring of their efforts. Having them there certainly helped additional bathroom aids. Paradoxically, Polio reduce my stress levels! A great example of the Australia received less philanthropic funding than future of our allied health therapists! in previous years. - Ed
Whilst the Stamford Grand did provide sponsorship in the form of a deduction on their regular pricing structure, it is an expensive hotel right on the beach . . .
However, we do wish to warmly thank The Marian & EH Flack Trust, as well as GlaxoSmithKline, for their ongoing and generous support for these Retreats.
Additionally, we give thanks to a few Retreat participants who followed up with various sized donations to Polio Australia. All contributions were very much appreciated. (l-r) Alex Daniel and Vivienne Maxwell Page 13
Volume 3, Issue 2
Polio Health and Wellness Retreat ( C o n t ’ d )
For those who like statistics, the 70 participants were made up of:
14
10
14 32
Participant Ratio
States Page 14
Polio Oz News
Polio Health and Wellness Retreat ( C o n t ’ d )
Year of Birth
Polio Year Page 15
Volume 3, Issue 2
Polio Health and Wellness Retreat ( C o n t ’ d )
Reflections on the Retreat Unley Physiotherapy. Ann Friday afternoon brought explained various diseases that Adam Holden, Orthotist from have similar symptoms to PPS; “Orthotics Prosthetics South some statistics on polio people; Australia” which is part of various health issues of polios; Repatriation General Hospital. discussed pain and its His topic of “To brace or not to management; reflected on the brace” was a great success as loss of motor neurons and the people looked at and possibility of other neurons discussed various braces and making new pathways to orthotics and compared them overcome the lost pathways; to their own as well as their and also touched on gentle experiences. exercise compared to strenuous exercise stressing the adage Adam’s theme was to increase “Conserve to Preserve”. quality of life, safe mobility and preservation of existing by Sylvie Cleret & Marc The next session for the musculature/joints as well as Adams, Port Elliot, SA morning was “Pain and Fatigue providing optimal function Management” by Dr Nigel with minimal inconvenience. What a fabulous 3 days. Our Quadros, director of feet still haven’t touched the Rehabilitation Services at the The next session on Friday ground. Queen Elizabeth Hospital. Dr was “Understanding Aged Nigel opened up a general Care in SA” by Lyndal Gerrard Sylvie and I arrived at the discussion on central and from “Access 2 Home Care”. Stamford Hotel on the Thursday specific pain, providing Lyndal discussed how home afternoon and were seamlessly comment on various care and its access are about registered and directed to our pharmaceuticals (mainstream to change in that the various lovely room overlooking the and alternative). He then went services are about to be Glenelg Pier. The rest of the into management of PPS, centralised. Lyndal provided afternoon was spent exploring together with some of the other some contact numbers and the beach and the local conditions that affect PPS such advice and gave an indication shopping precinct. how people are assessed as carrying too much weight, Thursday evening, everyone etc. currently for the various gathered for a lovely meal; to services. Dr Nigel advocated “some” meet the other delegates; to exercise by everyone even if it The option after the evening hear Dr John Tierny, Gillian was only stretching, but keep to meal was a movie “The Thomas and The Hon. Steve only a third of our maximum Sessions” or free time. Whilst Georganas; and to hear the ability. The endorphins created many saw the movie we opted ever present and effervescent by exercise bring about a “feel for free time in order to Mary-ann Liethof. A delightful good” situation. He advocated absorb the daily events. way to start the retreat. soft massages, neuro - Saturday morning started with physiotherapy and advised that Many choices of sessions were a buzz as we were treated to if a patient was at the stage offered to the delegates; we all an address from Susan Hillier, where referral was needed to a had to choose sessions prior to Associate Professor of “Pain Clinic” in Adelaide then attending the retreat and this N e u r o s c i e n c e a n d there was up to a two year ensured that a maximum of 20 Rehabilitation from the could attend each session apart waiting list. University of South Australia. from the plenaries which were He also believes that the term Her topic was open to everyone first thing Post Polio Syndrome should be “Neuroplasticity”. Have you each the morning. heard about it? We hadn’t. It replaced with “The Late Effects The plenary on Friday morning of Polio”, a term not agreed means the brain is capable of introduced Ann Buchan, a with by everyone. change. It underpins the way
“Neurophysiotherapist” from we learn and the way we Page 16
Volume 3, Issue 2
Polio Health and Wellness Retreat ( C o n t ’ d )
recover from brain trauma as well as how the the stunned and delighted faces of the various brain processes chronic pain. Not only was the people. talk stimulating it was informative and positive. Sunday morning commenced with a talk from Susan’s theme was to get out there and do as Professor Ian Maddocks AM. Professor Ian is an much as you can, taking into mind fatigue, Emeritus professor at Flinders University who is ability, etc. She advocated that we should be a specialist in palliative care and is recognised positive and not scared to do things, that we internationally for tropical and preventative should pursue mental stimulation, not lock medicine. Professor Ian Maddocks is also the ourselves away but create a purpose in our life. Senior Australian of the Year 2013.
Next session for the morning was “Mindfulness” Professor Ian spoke on the subject “The by Georgie Davidson. What a fabulous follow up Healthy Spirit”. He related his experiences in from the previous session. Georgie has been a Papua New Guinea where he was enthralled by professional musculoskeletal physiotherapist the co-operation between members of the and yoga teacher who brings a holistic village where he stayed for 14 years. Not only approach to health care. was there co-operation but friendship, camaraderie and thought of the other person. By bringing to mind the present moment, the This he regarded as a healthy spirit. taste, the look, the feel, we can learn to Unfortunately as time has moved on and appreciate life as it is now instead of stressing Western influences felt, this “Spirit” has over the past that we can’t change, nor control changed. Professor Ian commended everyone our future. By appreciating the now we can for being part of Polio Australia especially the appreciate ourselves and the world we live in. retreat as it showed the spirit of helping and The first session for the afternoon was supporting each other. “Partnering Polio” a session for the partners of Once again the next session supplemented the polios. This session was run by Graeme Smith, first. Bishop Bruce Rosier (Ret) introduced “The the partner of Joan Smith, one of the polios. He Gift of the Holy Spirit, The Comforter – opened up the group with a “tell your story and Strengthening us in our Daily Life”. The group experience” from each member. This brought was made up of people from many faiths but all forth many strategies and coping methods and showing an interest in their fellow man, all certainly showed everyone areas where they being guided by “The Spirit”. Bishop Bruce had to let go as well as how to introduce new explained his definition of The Holy Spirit and ideas. Communication and negotiation skills why. He quoted some of the Bible passages in were emphasised. A great session. particular from John’s Gospel, quoting Jesus The next session was well attended. The saying “Do not let your hearts be troubled. subject was “Exploring Wine”. It was well worth Trust in God, and trust in me.” A wonderful way waiting for. A number of members from “The to finish the sessions. Amateur Winemakers & Brewers Club of Our final lunch was where everyone could Adelaide Inc” introduced the group to the art of discuss the events of the last few days, to swap beer and wine making. addresses and to say goodbye, but not quite Not only were we taught some of the yet – Mary-ann and her new choir were there to manufacturing concepts and the appreciation of enthral us with their virtuosity and talent. What wines, we continually tasted the products. The a great show. wines tasted were superior to many commercial The only way to finalise these notes is to say quality wines. thank you to Polio Australia in particular Mary- Everyone caught up at the evening meal and ann, Gillian and John together with all of the whilst eating were entertained by Simon volunteers, but a special thank you to everyone Skinner, a magician from Aces Magic who attended and made the retreat the success Entertainment. He proved to be very that it was. entertaining with his tricks performed at people’s tables. You could tell he was good by Page 17
Volume 3, Issue 2
Polio Health and Wellness Retreat ( C o n t ’ d )
Thoughts on the Retreat by Ann Buchan
When I was asked last year by a physio student (commissioned by Mary-ann Liethof), to consider being involved in the Retreat in 2013, I didn't really realise what I was in for.
I first became interested in the work as a teenager, meeting as a girl guide and in the school hall at Yooralla Crippled Children’s Centre in Balwyn, Victoria. The room was full of standing frames and braces and callipers. My sister had a friend who was also a Girl Guide (Julie), who had been partly disabled by polio. Then I had a physio visit the house to treat my sister for asthma, so I then knew I wanted to be a physio (and that same physio, Pat Cosh, ended up being the head of the physio school).
I have been working as a neuro physio now for 45 years. In my private practice work, I have seen people with the late effects of polio for 30 years and am still learning.
I have been to a few polio conferences and was on a panel helping to edit the two late effects of polio handbooks with Charlotte Leboeuf (1991).
Contact with Mary-ann by e-mail certainly inspired me to see this Retreat as something rather special.
I have never given a formal plenary talk before, so the job was quite daunting - there are now so many references available and increasingly more evidence and guidelines for effective care. So where was I to start?
And so to Thursday evening: and not a bad setting either!!
The opening sharing of hopes for the three days The plenary talk was hard to keep short yet ahead were very special, such as . . . relevant, not too complex and yet not We thought we had it licked. oversimplifying or minimising the complex Learning to be better for the carer, in spite range of features in Post-Polio Syndrome (PPS) of pain and lethargy. and the difficulty in diagnosis. Hearing other peoples’ stories - and The ‘Falls’ session could have gone on for two goodness, did that become quite hours - I certainly appreciated people's honesty confronting!! But exciting too when one in telling their falls story. How do you keep a person shared that he felt 100% better after balance between keeping active and not being the last Retreat! too fearful of falling, using a crutch or stick and Issues of surgery being offered without really a splint (to effectively ‘come out’ and admit considering the whole of the body! that there are some problems!). Some had had no contact with others with PPS. Having a student, Ben, with me to demonstrate Others could have run the whole weekend on what normal balance is in the 23 year old their own experience and knowledge of the versus a 60+ year old was helpful. And I hope bigger picture! that getting up off the floor will now be easier One had “blanked it all out till now”! for the frequent fallers amongst the Some saw it as a new chance, some looking participants. for practical tips. One had been in an iron lung for 2 years, yet Having the opportunity to see people and a did national service and worked for 30+ carer in the consult room was a rare treat. Too years! often a local pain concern is only treated locally One had been a tap dancer. - a painful neck may be from over activity and Carers wanted to learn more. muscle imbalance. For some people, no one has really looked at this or the windup phenomenon What a great starting point for the weekend of pain. Panic and fear of what it may be like Page 18
Volume 3, Issue 2
Polio Health and Wellness Retreat ( C o n t ’ d ) linked to those early traumas. designs and supports now. But we still need to
Splints need regular checking or secondary be careful as too many modern ones end up in nerve compression can cause more disability. It the back cupboard. One person I saw was was great to have the other University of SA getting a neuropathy from the callipers being too tight. physiotherapy graduates, Alex Daniel and Vivienne Maxwell, present as volunteers. Let's It was a treat to be able to attend. hope that the next generation of allied health practitioners does really get it. Suggested additional reading: Explain Pain by Dr David S. Butler and Prof G. I have some research questions: Lorimer Moseley (Noi Publications, Adelaide Were there more miscarriages amongst Australia, 2003) women who had polio? Clinical Neurodynamics by Michael Shacklock, Is there a greater risk of bowel cancer for published by Elsevier, 2005. people in a wheelchair? The Late Effects of Polio: Introduction to What is the incidence of Parkinson’s features Clinical Practice by Polio Australia, 2012 later in life in people who had polio? The 10 Commandments of PPS:
My thanks go to participants Lorraine, Esther, (Richard Bruno and Nancy Frick) John and Fay, Pauline, Douglas, and Kate and others for raising further questions and challenging a traditional therapeutic model.
I have provided various handouts including Richard Bruno’s “10 Commandments”, The Challenges of Post-Polio Syndrome presentation, and a list of points as a background to the Falls session.
In my sorting of polio and post-polio notes, I came across notes given out (when I was a student) on the callipers, splints and support systems available. I was sorry not to hear Adam Holden’s session on “To Brace or Not To Brace”. There is certainly a greater variety of Room with a View
Ann and Ben (left) presenting ‘Falls’ Session Page 19
Polio Oz News
Touched by Polio: from casts to catharsis
Since this exhibition was launched in March earlier this year, 19 of the 35 artworks have been sold for between $150 and $500 each, raising a healthy total of $4,455.
As Polio Australia receives no government or any other regular funding, the “Touched by Polio” exhibition artworks have been generously donated by the artists for auction/sale, with all proceeds going to assist Polio Australia in continuing their work to provide services for polio survivors.
The remaining 16 pieces are currently on show at: Coonara Community House 22 Willow Road Upper Ferntree Gully Victoria Australia
Coonara is open between 9.00am and 4.00pm Monday to Friday and the exhibition can be seen until Friday 19th July.
As we are keen to promote this exhibition widely, if you have a solid contact for free exhibition space in the Melbourne metropolitan area, please contact Mary-ann.
All these artworks are still for sale and can be viewed online here: www.polio.org.au
1. Boot Full of Blooms by Margaret Greig 2. Bound by Kat Panourgias 3. Butterfly by Dianne Kennedy 4. Dancing Queen by Frances Henke 5. Evening Wear by Wendy Davies 6. My Elusive Dream by Nola Stewart 7. Out for a Fling by Margaret Greig 8. Reaching by Judith Maxwell 9. Said Leg by Maureyn Brees 10.Splish, Splosh, Splash by Heather O’Flaherty 11.Steep Ascent by John Marsh 12.Story Time by Frances Henke 13.Surveying His Farm by Margaret Greig 14.The Long Climb by Pauline Derrick 15.The Party Frock by Merilyn Dixon 16.Walking Tall by John Marsh
If you simply must have one of these amazing pieces, email Mary-ann with your offer. And remember, it’s all for a good cause!
Note: Postage costs will vary according to size and destination, and will be added to the purchase price. - Ed
Clockwise from top left: Butterfly, The Party Frock, Splish, Splosh, Splash, and My Elusive Dream Page 20
Polio Oz News
Feature: Polio Network Members of Polio Australia
Polio Australia is the peak, national body representing polio survivors in Australia. The Committee of Management is made up of two representatives from each of the original six state polio networks.
In this edition of Polio Oz News, we are featuring Polio Network Victoria (PNV), a service of Independence Australia. The following article was provided by PNV’s Information Services Community Worker, Jen Sykes.
The story of Polio Network Victoria begins with awareness of needs, organise workshops and Edith Hall AM. From 1982-89, Edith was the provide guest speakers to community groups Executive Officer of Independence Australia and schools. (formerly Paraplegic and Quadriplegic Association of Victoria, founded in 1957). She had polio in In 1996 the first Polio Day was held in Ballarat 1937 and was acutely aware that nothing was attracting more than 100 people. The focus of being done in Australia for polio survivors. the day was social and for many people it was an opportunity to meet up with other polio In 1987 she attended the fourth Polio Survivors survivors they had not seen for decades. It was Conference in St Louis, Missouri, USA, and brought such a success it was decided to run one back books, leaflets, papers, audio and videotapes. annually. The Board of ParaQuad was sympathetic to establishing a polio network, so she held a public As of 2012 there were 15 polio support groups meeting to which 125 people turned up. across Victorian metropolitan and country areas. The Information Services Community Worker is Beth Brodribb, who had been working with in regular contact with the Polio Support Group ParaQuad’s sheltered workshop, was asked to help convenors and visits the groups where able. The with the network. Her job was to gather and Polio Advisory Committee (PAC) was formed in disperse information. Copies of material Edith 1991 from members of PNV and achieved a brought back were sent interstate and within a great many things including information year networks of polio survivors were formed in booklets, PNV’s website, and “Post-Polio each state and territory. Syndrome: The Australian Experience” DVD to name a few. In 1989 the network changed its name to the Australian Polio Network and began a social In 2011, following a review of the support program for members, numbering well over 500. services at Independence Australia, the PAC was Beth Brodribb attended some international disbanded and replaced by the Polio Reference conferences and like Edith before her, returned Group (PRG), with membership more in line with with valuable resources. One of the issues the representation of the support groups. This group network had to tackle was educating health oversaw the organisation of PNV’s 25 year professionals about the late effects of polo. In celebrations in 2012 at Melbourne Zoo. 1989 the Department of Community Services approved a small amount of funding for 12 PNV has 2 representatives on the Polio Australia months, which was used to produce and distribute Committee of Management; Jen Sykes, the network’s newsletter. The need to target Information Services Community Worker at health professionals led to a symposium held in Independence Australia, and Gordon McKinnon April 1991 in conjunction with Datech Expo ’91. from the Warrnambool Post-Polio Support group, Health professionals came to learn from the group, and member of the PRG. generating more enquiries. A post polio clinic was set up at Bethesda Hospital in mid 1991, run by Dr Peter Colville.
In 1995 the network changed its name to the Australian Polio Network (Vic) then to Polio Network Victoria (PNV). In 1994 there were two community officers based at ParaQuad whose roles were to help set up groups in areas where they did not exist, promote polio immunisation, raise Jen Sykes Gordon McKinnon Note: Gordon replaces long-term Management Committee Member, Michael Judson, who sadly passed away due to cancer in April 2013. - Ed Page 21
Volume 3, Issue 2
My Story by Elizabeth Edmondson
and the pusher collapsed with Pam inside. Mum quickly opened the pusher and up popped Pam like a Jack in The Box! I thought it was funny but Pam was not amused. Mum also helped me do exercises on the kitchen table - we used to listen to Jason and the Argonauts on the ABC radio.
I started swimming when I was about 5, learning to swim at the Crawley Baths in the Swan River. My coach would walk along backwards, with his hand under my head, while I swam backstroke. For dog paddle and freestyle, he had a piece of wood on a rope, which I would hold onto. While he towed me up and down the pool, I would be swimming freestyle or dog paddle. You had to be quick, so that you didn’t let go of the wood completely. My first success in swimming was coming 3rd in the dog paddle race in year 1 at the school sports. I never used my legs for swimming.
Walking with the parallel bars In those days, my calliper did not bend at the knee. At about the age of ten, I finally had a st Although I was born on July 1 , over 60 years calliper that would bend. I was so happy going ago, my story really began on September 27, to school on the bus, wanting to show off this 1951, when at the age of 15 months; I was wonderful new calliper that bent at the knee. taken to hospital and diagnosed with polio. I My friends weren’t impressed as their knees spent the next fifteen months in the Golden bent all the time! Also, I used to have to get Age Hospital. special boots made for me, to support my
Towards the end of my stay in hospital, I was ankles. As my feet were growing rapidly, the allowed home for the weekends. I would go Orthotics department would cut the toes out of my shoes so I would have more room to grow. home with both legs in plaster, with a wooden bar holding my legs together. In early 1964, when Pam was nearly 8, Mum
When I was at home, later on, every night I took her to Tony Howson to learn to swim. I had to sleep with my legs in plaster and my said I would like to go too, as it was one sport I back tied down onto the bed. I became very could do. He lived in a Commonwealth Games good at winding bandages each morning. One House in City Beach which had a 25 yard pool night, I lifted up my legs vertically, and then in the back yard. Very soon, Tony suggested I back down onto the bed. As a result, all my joined his Swimming Squad at Beatty Park, which I did. blankets were under my legs, and as it was in winter I never did this again, as I was cold for One day Tony came up to me and said “You the rest of the night. have just broken a world record”. Before I knew
When I came home at 2½ years, my father it, at the age of 14, I was competing in the made me parallel bars so I could learn to walk. Adelaide selection trials for the Paralympics to I was given a jelly bean for every length I be held in Tokyo. At the age of 14 years and 4 walked. Later on I would go to the Golden Age months, (the youngest person to represent Hospital, for physiotherapy lessons. There was Australia) I went to Tokyo, and won 3 gold a large warm bath, probably 3 meters square, medals and broke three world records in the where several children would sit in the bath 55m freestyle, breaststroke and backstroke. I doing exercises. I was 6 when my sister Pam was not selected to go to the Commonwealth was born. One time, when going to my lessons, Games in 1966, but went to Israel in 1968, and my mother hadn’t locked the pusher properly, won 2 gold medals (also world records) and 1 Page 22
Polio Oz News
My Story by Elizabeth Edmondson ( C o n t ’ d )
silver in the 50 meters backstroke. with my results as I broke 11 PB’s out of a total of 12 events. I was also lucky to win a bronze I stopped swimming after this, as I had to earn my medal in the 4 x 25 Medley Relay. I then swam living. Whilst working at Telstra I met and married in the State Short Course Championships in Ken. We had one daughter Ruth, but unfortunately Perth and broke another 6 PB’s out of 7 races. I we separated when she was 3. Ruth is now 24 and celebrated turning 60 in 2010 by breaking 60 studying at the Australian National University for PB’s! (oops I ended up breaking another 3!) her doctorate. In 2011, I had a new challenge to face - I was In 2000, I was awarded the Australian Sports diagnosed with post-polio syndrome in my right Medal in recognition for my services to swimming. arm, but still competed in the 2011 Australian I returned to competitive swimming in September Masters Games held in Adelaide in October. I 2006, and as a result my health has improved won 6 individual gold medals and 4 relay greatly. I am an active member of the Stadium medals. Snappers Masters Swimming Club. In April 2008, I swam in the 800m freestyle event in the World In 2012, I had surgery on my left shoulder in Masters Games held in Perth and in June I was an February, but am now back in the pool and inaugural inductee into the WA Swimming Hall of swimming slowly. Fame. I intend to keep swimming for as long as I can, In December 2008, I was diagnosed with breast as the motto for the World Masters Games is cancer and underwent a lumpectomy. After “Fit, Fun and Forever Young” a wonderful quote surgery, I wrote to my friends and told them I now to live by. had one concave and one convex breast. One friend then asked “Does that mean you will swim round in circles?” Luckily, when I resumed swimming in early 2009 I was still able to swim in a straight line!
I competed in the Australian Masters Games in Geelong and Masters Swimming in May 2009. I then had 6 weeks radiotherapy in May and June, resuming training in July for the World Masters Games held in Sydney in October where I won 4 gold and 1 silver medal.
In 2009 I was lucky to win 22 gold, 4 silver and 1 bronze medal which doubled my medal collection in one year. I was also inducted into the Wheelchair Sports Hall of Fame.
In 2010, I went to Launceston to compete in the Home from World Masters Games 2009 Masters Short Course Games. I was very pleased
Showing my medals to family and friend on my Arriving home from return from Israel 1968 Me with big sister Jo Tokyo November 1964 Page 23
Volume 3, Issue 2
My Treatment in Hobart
by Carol Squires
I contracted polio in 1949, aged four, and spent the next three years in hospital. I left hospital with one leg shorter and one foot smaller and other associated problems.
No major issues were experienced until ten to twelve years ago when I developed muscle weakness, tiring quickly and burning sensation in my legs.
Four years ago I went to see Dr Stephen de Graff in Melbourne, a Rehabilitation Specialist who treats people with the late effects of polio. Steve suggested I consult a Neurological Physiotherapist, so on returning home, my GP referred me to Phil Ladlow at Allcare Physio in Sandy Bay. Phil has a Masters in Neurological Physiotherapy, and is a qualified instructor of Rehabilitation Pilates. Phil is also a Clinical Advisor to Polio Australia.
After initial consultations, Phil recommended I try Rehabilitation Pilates in a group of three people conducted by him, so it was almost like having one-on-one sessions, with exercises tailored to my condition.
Over a period of four years, I have made good progress doing stretching, core strength, posture and muscle improvement exercises using various pieces of Pilates equipment and a routine of exercises at home. I have since progressed to another Pilates group of five conducted by Jasmin Rattray but with all exercises set by Phil.
For anyone having polio related problems in Hobart, I would certainly recommend seeing Phil at Allcare Physio in Sandy Bay. He has helped me so much, and I am now going forward not backwards.
Physical Disability Australia
Physical Disability Australia (PDA) exists to proactively embrace and promote difference and diversity for an inclusive society'.
Want to become a member of PDA? Contact PDA by phone on 02 6567 1500 (9am - 5pm Monday to Friday), email at mailto:[email protected], or go to: www.pda.org.au, complete the form and return to PDA. It’s free if you have a disability and $27.50 for organisations.
Anyone interested in receiving PDA’s regular bulletins should send an email with ‘subscribe’ in the subject heading to [email protected] and include in the email that they wish to subscribe and they will be added to future bulletins. Page 24
Volume 3, Issue 2
Access All Areas
Source: Senator Rachel Siewert Website the specific challenges you face participating in your community? Is it steps, footpaths, toilets, Access All Areas audio loops or parking? What change is needed The Access All Areas map below is a compilation for you to be able to access all areas? (Photos of universal access issues throughout Australia really help, so make sure you include one so we submitted by people with disability, their carers, can see what you mean). family and friends, using the Access All Areas app for iPhone. But the app isn't just about the barriers. We also want you to tell us the positive experiences. We When the reports start coming in you will be want to be able to share the good news when able to zoom in and move the map to see services, businesses, events and facilities are the feedback submitted from your area. inclusive and easily accessible to all people.
To add your own feedback, get the Access All Your feedback is sent to the Greens Areas iPhone, iPad or Android application and Spokesperson for Disability Issues, Senator send us a report. Rachel Siewert. The Greens will collate the information from the app and prepare a report Get the app for Apple iOS here. which we will present in Parliament. Personal Get the app for Android here. contact details will not be made public or If you don't have one of the devices then simply included in any reporting. email your feedback with the location and a We will also make the formal report publically photo to [email protected]. available so this information can be fed into Most of us take for granted that we can easily go other government processes including the work to the bank, shops, pool, have coffee with of the Australian Human Rights Commission and friends, attend concerts and sporting events, and local government. all the other many different things we do in our Let's work together to make our communities ordinary everyday lives. However, for people with more inclusive. You can read more about our disability such simple everyday tasks can be plans for the Access All Areas app here. extremely challenging. The lack of accessibility for people with disability in our communities limits people's independence and compromises their quality of life. More than 27 per cent of respondents to a recent disability survey identified lack of access to the environment as a barrier to their full participation in the life of the community.
The Australian Greens want to make sure our communities are accessible for everyone.
We recognise that this will require the efforts of local, state and federal governments, as well as businesses, groups and individuals. Together we can work to increase understanding and awareness of this issue and to create more inclusive communities to the benefit of us all.
People with disability, their carers, friends and families, are invited to share your experiences of participating in community life and help us to keep access on the agenda.
So tell us, where are the most obvious barriers to the participation of people with disability in your area? We know that the community is diverse and that everyone has different needs. What are Page 25
Volume 3, Issue 2
Fran Sails Into Publishing For Her 70th
Some people jump from a plane or go up in a balloon to mark their 70th birthday, but Fran Henke has published her first novel, a true story of love and survival in the extraordinary days of early Victoria.
“The Other Side of the Wind: A Story of Survival” was launched on June 22 by Dr Mary Ann Ghaffurian, daughter of Lucy Purcell who more than 20 years ago told Fran a story of the arrival of her ancestors to Geelong.
Author of 13 non-fiction books, Fran, a polio survivor, always wanted to write fiction but journalism intervened. A career in print, radio and publishing saw her working in London, Sydney, Melbourne and regional newspapers. She spent almost four years as a member of the Commonwealth Film Censorship Board and has written books on gardening, leading to columns on gardens for magazines and newspapers.
As well as working as a media advisor for State and Federal MPs, Fran’s work in raising awareness of the needs of polio survivors has seen her win community service awards. She is chair of the Polio Reference Group, Victoria.
But the story she heard in 1992 caught her imagination. Extensive research brought the story to life and led her to write “The Other Side of the Wind”.
“Mrs Purcell told me that her ancestors came male-dominated society with its military rule out to Australia on a sailing ship, landing at Pt under pressure from free settlers and free Henry, near Geelong,’’ Fran said. thinkers.
“There was no wharf in those days so boxes This is the robust canvas onto which the newly and bags were thrown onto the beach. The married couple, Edward and Catherine couple found one was missing, so the husband Anderson, arrive. They become unexpectedly when back to the ship to find it, but the wind separated after a wind shift sees Edward left on changed and the ship – with him on board – board and Catherine stranded in the new took off through the Heads, leaving his wife colony. stranded on the beach. It took him six months to get back to Australia”. How will the fragile artist Edward cope again at sea? How will Catherine manage in the frontier So, “The Other Side of the Wind” is set in town without money and her beloved husband? 1851 in the new colony of Victoria. Boom town Geelong has grown on the sheep’s back, to “The Other Side of the Wind – a story of become the main destination for people arriving survival” by Frances Henke was launched on to join the gold rush. June 22 in Mornington by Dr Mary Ann Ghaffurian, daughter of Lucy Purcell, who These people are making new lives – related the story more than 20 years ago; and conservative graziers, bureaucrats with brutal on June 20 in Fran’s ‘home country’ of pasts in the penal settlements, extroverted Gippsland by Mirboo North bookseller Susan individuals determined to make their fortunes, Lendon, satisfying the author’s Geminian ordinary folk escaping the clearances. inclinations for two of everything.
Women are playing a key role, throwing off the Contact: Fran Henke on 03 5979 7274 or shackles of old world convention, blazing trails [email protected] in unexpected directions. They are striving to survive, to bring kindness and quality to the Page 26
Volume 3, Issue 2
Paralysed with Fear: the Story of Polio
Source: The Lancet, Volume 381, Issue 9880, Pages 1805 - 1806, 25 May 2013
Paralysed with Fear: the Story of Polio by Gareth Williams Palgrave Macmillan, 2013336 ISBN-9781137299758
Contrary to the signature opening of the television series Star Trek, Gareth Williams, professor of medicine at Bristol University in the UK, has decided to boldly go where many men and women have gone before. Like Richard Carter in Breakthrough, or Tony Gould in A Summer Plague, or Aaron Klein in Trial by Fury, or John Paul in A History of Poliomyelitis, or Naomi Rogers in Dirt and Disease, or Jane Smith in Patenting the Sun, or John Wilson in Margin of Safety, or Nina Seavey in A Paralyzing Fear, or, most notably, David Oshinsky in his Pulitzer-Prize-winning, Polio: An American Story, Williams has written a book about polio and the polio vaccine. Remarkably, in Paralysed with Fear: the Story of Polio, Williams has made a significant contribution.
Williams doesn't shy away from the science. He begins by detailing the discovery of poliovirus and its method of spread in a manner so dramatic that we can't wait to turn the page, even though we already know the ending. He accomplishes this feat by mixing a conversational tone (“This is a good moment to put the science of polio to one side”) with great writing (“If smallpox was a mass murderer, then polio was a sniper, and all the more menacing because nobody would see where the fatal shots had come from”). In describing two experimental polio vaccines from the 1930s that had inadvertently paralysed and killed several children, Williams writes, “like the head of traitors stuck up around the walls of a medieval city, they were also a warning to others not to go down the same dangerous path”. Williams also affords the virus human qualities; when describing a successful vaccine, he writes, “[Polio] had unwisely chosen to target the American people, and therefore set itself up for revenge through the might of American science.”
New Handicapped Sign Rolls Into New York City
Source: North Country Public Radio (USA)
The handicapped [sic] sign is getting a new look — at least in New York City.
The initial design, created in 1968, depicted a person with no head in a wheelchair. The sign has changed since then — the figure eventually got a head — and now it's trying something new.
Sara Hendren, a Harvard graduate design student, is co-creator of a guerrilla street art project that replaces the old sign with something more active.
"You'll notice in the old international symbol of access, the posture of the figure is unnaturally erect in the chair," she says. "There's something very mechanical about that."
Hendren's new design looks more like a person wheeling him or herself independently. "Ours is also leaning forward in the chair. There's a clear sense of movement, self-navigation through the world," she says. Read more here. Page 27
Polio Oz News
Fatal Fears Over ‘Modern Polio’ by Hugh Whitfeld Source: 7News - 19 June 2013
A special panel of doctors has been set up to investigate an outbreak in Sydney of a new super virus, linked to the deaths of four children.
One hundred more have been infected by the highly contagious virus which is being called "modern polio".
The Sword family has photos and memories, but they cannot hold their baby Bethany (pictured right), who died aged 19 months from EV71. When a child arrives in hospital there is no magic bullet drug or treatment, they are simply "In the space of two days, she'd gone from a prescribed fluids and bed rest. relatively healthy kid to gone," father Luke Sword said. It is a virus worrying doctors because they know little about it, including why it is killing some Enterovirus 71 has killed hundreds in Asia. It was kids, and not others. first noticed among toddlers on the Northern Beaches. A special medical panel has been set up.
"That night [my daughter's] heart rate monitor "We're very much working with the hospitals to went off five times before I even realised that learn as much as we can about the disease in something wasn't right," Sydney mother Saartje Australia," Dr Vicki Shepherd said.
Destoop-Timmony said. The New South Wales Health Minister says the
Zali spent a week in hospital after picking up the department always takes "these outbreaks very virus spread through bodily fluids like saliva at seriously." childcare. The virus is a strain of the common "I'm advised by the experts but this is not hand, foot and mouth disease and similar to polio something that should panic people." Jillian which is deadly, but now eradicated. Skinner said.
Doctors say if you notice symptoms like high fever, Parents are being urged to make sure their drowsiness, a blister-like rash, jerky movements, children wash their hands thoroughly, especially unsteadiness on feet, and heart and lung after using the bathroom, and before eating. inflammation then you should seek help. And to use a tissue when sneezing.
"I understand they don't want to scare the Children under five are most at risk especially population, but on the other hand I felt like I those under two. If you notice any of the wasn't educated about it," mother Saartje Destoop symptoms listed above, you should seek help. -Timmony said.
Bowelscan is a Rotary program developed in 1982 in New South Wales and now conducted by over 250 Rotary Clubs across Australia. These Clubs issue approximately 150,000 kits during their annual Colorectal Screening programs. Since Bowelscan commenced, it is estimated that more than 1,000 people with bowel cancer and 5,000 with polyps have been detected.
Bowelscan is a public awareness program seeking to increase community knowledge of bowel cancer and its symptoms as well as the distribution of faecal occult blood testing kits to facilitate early diagnosis. The aims of the Bowelscan program are to: • enhance public awareness of the need for bowel cancer screening; • promote and coordinate the Bowelscan program annually; • emphasise the importance of bowel cancer screening for both men and women over the age of 40.
Bowelscan is a not-for-profit initiative. The successful operation of Bowelscan, and its accessibility to a wide range of people, is made possible by the voluntary support of a large number of pharmacies, pathology laboratories and Rotary members.
Check the National Bowelscan website for further information. Page 28
Volume 3, Issue 2
Common Playground Illness Has Its Lethal Side by Melissa Davey, Health Reporter rarer EV71, responsible for the deaths of two Source: Sydney Morning Herald - 23 June 2013 NSW children since late last year and suspected in the deaths of two more. Two of the children were under the age of one. Three were from metropolitan Sydney and the other from the Hunter region.
''It made me feel sick and so sad when I heard children had died recently from this,'' Mrs Cachia said. ''I realise we were lucky. I would urge parents to take their children out of childcare if they have hand, foot and mouth disease and to go back to the doctor if their child gets worse.''
A spokeswoman for the NSW Ministry of Health said the latest data provided through NSW Health's surveillance system showed the incidence of enterovirus cases had dropped since March. ''We have sent alerts across the state, including media releases for the general public and targeted messages to general practitioners, emergency departments and childcare centres,'' she said.
There are no plans to make enterovirus a notifiable disease, whereby doctors are required to alert health departments.
''The reasons for making a disease notifiable include two main criteria - whether we can prevent further spread from an individual case by public health action, and whether we can gather data about each case to contribute to a Enterovirus survivor: Nathanael Cachia, 7, with his mother Caileen. Photo: Dallas Kilponen better understanding of how to prevent it in the absence of alternative methods,'' the Like many in childcare, Nathanael Cachia spokeswoman said. contracted hand, foot and mouth disease when ''Hand, foot and mouth disease and enterovirus he was 16 months old. The doctor told his do not meet these criteria.'' mother Caileen that it was a mild illness and to keep him quarantined until it cleared. Bruce Thorley, of the Victorian Infectious Diseases Reference Laboratory, stressed that in By the next day, Nathanael was paralysed in most cases EV71 caused no symptoms or did his right leg. not progress beyond hand, foot and mouth ''He was incredibly miserable, vomiting and disease. ''These hospitalisations and deaths are inconsolable,'' Mrs Cachia said. ''We went to the very severe cases,'' he said. emergency department and they found he had His laboratory had been notified of children brain inflammation. It took them 12 hours to admitted to hospital with paralysis and figure out he had an enterovirus.'' neurological symptoms, who are then tested to Now a healthy seven, Nathanael still receives exclude polio. Though eliminated in Australia, physiotherapy for his leg, which has almost polio may be imported from overseas. regained full strength. ''In excluding polio from these cases, we found Enterovirus is common in Australia and is a they had a specific strain of EV71, called C4a,'' cause of the usually mild hand, foot and mouth he said. ''I don't think we need to be alarmed, disease. But Nathanael was found to have the but we do need to be aware this strain is present.'' Page 29
Polio Oz News
Nigeria Records Nine New Polio Cases in One Week by Chukwuma Muanya (Lagos) and Eric Kebbi. Meya (Sokoto) Source: The Guardian – 11 July 2013 In the Horn of Africa, an outbreak of WPV1 is continuing, centred around Banadir, Somalia. The After about two weeks without recording any majority of cases associated with this outbreak case of Wild Polio Virus (WPV), Nigeria Thursday developed paralysis before the start of the reported nine new cases of the crippling virus, comprehensive emergency outbreak response bringing the number of cases for 2013 to 35. activities.
According to the latest edition of Weekly Polio In any case, WPV3 continues to be at the lowest Update published by the Global Polio Eradication ever recorded levels. Globally, WPV3 has not Initiative (GPEI), this is despite a sub-national been detected anywhere since November 2012 in Immunisation Plus Days (IPDs) held from July 6 Yobe State, Nigeria. to 9, 2013 in northern and middle-band states. He [Sokoto] noted that there has been a gradual
However, Sokoto State is now on the verge of and consistent improvement in the coverage of becoming one of the polio-free states in the the OPV administration and that the last three country, Special Adviser to the Governor on rounds had been particularly impressive with 63 Primary Healthcare, Ibrahim Jibril Sokoto, has per cent of the local areas achieving over 79 per said. While fielding questions from newsmen cent coverage. yesterday, Sokoto said his optimism was based The last round, he said, recorded the highest on the fact that though eight cases of WPV were coverage of 1.59 million children out of the reported in the state last year, no single case targeted population of 1.6 million children. On had been reported so far this year. the Emergency Operation Centre (EOC), which
Sokoto attributed the progress made in the polio started this year, Sokoto said that when polio eradication fight to the concerted effort of all finally disappears from the state, the centre, stakeholders, including the Sultanate Council, which was built by developmental partners, following the special measures evolved to would focus on other childhood killer diseases. achieve maximum coverage.
Those measures, he noted, included the use of medical doctors in a house to house campaign, and taking polio victims around to testify to people that their condition was as a result of non -compliance, as well as encouraging Quranic teachers and influential individuals to talk to the people about the safety and efficacy of the Oral Polio Vaccine (OPV).
Meanwhile, a breakdown of the figures means that, of the 108 cases recorded globally in 2013, Nigeria ranks behind only Somalia, which recorded 41 cases earlier in the year after not reporting any case for a while, and besides Afghanistan and Pakistan, Kenya has seven cases.
According to the GPEI report, the most recent polio case was type one (WPV1), from Bauchi, and had the onset of paralysis on June 18, 2013.
The report read: No new cases of circulating Vaccine Derived type two Polio Virus (cVDPV2) were reported in the past week. The most recent cVDPV2 case had onset of paralysis on November 24, 2012, from Page 30
Volume 3, Issue 2
Traces of Polio Continuing To Appear in Israeli Sewage
by Hana Levi Julian Health Minister Yael German An advanced form of the oral Source: israelnationalnews.com stressed there is “no reason polio vaccine is to be - 11 July 2013 to panic,” saying that not administered to some 150,000 even one case of clinical children in the south this Traces of the poliomyelitis poliomyelitis has appeared month, following last month’s virus are continuing to appear thus far. visit to Israel by officials from in sewage treatment facilities the World Health Organization But the ministry is continuing in southern and central Israel and the U.S. Centers for to monitor and examine stool according to the Health Disease Control. samples around the country, Ministry. and traces are continuing to Some rabbis in Jerusalem The virus, which can cause spread. The areas where the have begun to announce their paralysis, was once considered virus has been detected recommendation to vaccinate eradicated. But nearly one include the Lev Hasharon all children under the age of million doses of the “live area, Modi’in, Ramle, the six. attenuated” oral vaccine were Negev Bedouin city of Rahat, ordered at a cost of several Be’er Sheva, Ashdod and Tel Five vaccination stations were million shekels after the live Aviv. opened in Jerusalem for the virus was first detected in purpose of distributing polio According to some experts February in routine samples of vaccines to the hareidi- who testified before the sewage extracted from Rahat. religious population, which Knesset Health Committee includes families who choose Israel is one of only five last month, some 10 percent not to immunize their children countries in the world that of Negev residents have not at all. routinely tests stool samples, been inoculated against the via 16 sewage treatment plants virus. As a result, he warned, around the country. thousands of children in the country could be at risk.
Injectable Polio Vaccine May Be Introduced by Asif Choudary clinic, or provider’s office. polio campaigns or routine Source: Dawn.com – 4 June immunization”, the report said. Pakistan is one of the three 2013 polio-endemic countries which It says Pakistan will investigate
have been using oral polio the operational feasibility of In a major development, the vaccine (OPV) since the using IPV with OPV in injectable/inactivated polio disease has hit the country. campaigns in the areas of Fata vaccine (IPV) is likely to be and Balochistan where difficult introduced for the first time in The Polio Eradication and access and management issues Pakistan to help overcome the Endgame Strategic Plan 2013- have prevented the programme crippling disease more 18 of Global Polio Eradication from building immunity to the effectively, Dawn has learnt. Initiative (GPEI) had hinted at levels needed to interrupt the new scheme in its April The IPV is said to be highly transmission. 2013 report of introducing IPV effective in preventing for the first time in three polio These efforts will be combined paralytic disease caused by all endemic countries -- Pakistan, with other health promotion three types of poliovirus and is Afghanistan and Nigeria. activities and the mobilization of currently being used by a pediatricians to address other majority of the polio-free “The polio programme in health concerns of families. developed and advanced Pakistan is collaborating with countries. the Aga Khan University, Relevant support activities will Karachi, to pilot the use of IPV include training of health worker The inactivated poliovirus with OPV in 2013 as an communications development, vaccine is injected into a additional tool to rapidly build cold-chain management and muscle or under the skin and is an immune response in development of vaccine usually given by a healthcare children who have not been management strategies. professional in a hospital, easily reached through regular