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
At our 24 th Annual General Meeting held on 30 November 2013 the following members were elected to the Management Committee:
Gillian Thomas President Nola Buck Susan Ellis Vice-President Barbara Fuller Merle Thompson Secretary Gary Fuller Alan Cameron Treasurer Alice Smart Charles Anderson John Tierney Anne Buchanan
We were sorry to say good-bye to Wendy Davies who decided to stand down from the Committee this year to pursue other interests. We will miss her sharp eye for detail and her input at Committee meetings. Wendy’s departure means we currently have a casual Committee vacancy as her position was not filled at the AGM. If anyone is interested in offering their skills and experience to the Committee by filling this vacancy we would love to hear from you. Just contact me, or George in our Office, for more details (contact details are on p 18).
The Seminar following the AGM was presented by a volunteer from the Black Dog Institute, Anne Reddacliff, who spoke about “Breaking Down Depression and Building Resilience” . Her presentation was very well received and generated a lot of questions which were expertly answered. Sue Ellis will be writing up the Seminar Report in the next issue of Network News .
On pages 5 to 15 of this Network News you can read the concluding chapters of Sue Ellis’ Seminar Report on Dr Peter Nolan’s comprehensive presentations at our 2012 AGM. Writing this Report (the start of which appeared in Network News , Issue 87, pp 13-19) has been a mammoth undertaking and we hope you gain a lot from it. The videos of the presentations can be accessed at
The 2014 Polio Health and Wellness Retreat will be held at St Joseph’s Centre for Reflective Living in Baulkham Hills, NSW. The dates are Thursday 8th May to Sunday 11th May. Polio Australia held its first Retreat at this venue, which is a lovely, peaceful environment, and very conducive to sharing and learning new information. If you are not already on Polio Australia’s email list to receive registration and other information when it is sent out early in 2014, contact the Polio NSW Office or email
We are keenly aware that many of our members are no longer able to either use public transport or drive themselves to Seminars, Support Group meetings, and other Polio NSW activities. Through the Federal Government’s Volunteers Grants initiative, we have obtained limited funding for fuel for a volunteer to drive members to/from these activities. If you can arrange for a family member, friend or neighbour to drive you we will give that person a $20 fuel gift voucher (higher amounts will be considered for longer distances). If you could benefit from this assistance please be sure to contact the Polio NSW Office for more information.
Next year marks the 25 th Anniversary of Polio NSW and we hope you will celebrate with us – further details will be advised in the next issue of Network News . In closing, the Management Committee joins me in wishing each and every member and your families a joyous Christmas and a healthy New Year.
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 88 – December 2013 Page 1 by Gary Fuller, Support Group Co-ordinator
Port Macquarie Support Group
Gail Hassall who has been Convenor for 4 years tells me that the Port Macquarie Support Group had its first meeting in November 2003. The Group was set up by Pat Adamson who was Convenor until she left Port Macquarie in 2009.
The Group is to celebrate their 10 th Anniversary at their December Christmas Meeting.
The Group is likely to soon change their name to “Mid-North Coast Support Group” as members are drawn from Foster, Kempsey, South West Rocks and Bowraville, as well as from Port Macquarie. The new name will therefore reflect the areas from which the current members are drawn.
Nepean Support Group
Member Madeline Coelho of Springwood read in the September Network News that we were seeking a Convenor for the Nepean Support Group and let us know that she would be interested in taking on this role. Madeline has not let the grass grow beneath her feet and has already organised the first meeting. It will be held on Monday, 17 February 2014 at the Penrith RSL Club (8 Tindale Street, Penrith), commencing at 11:30 am, followed by lunch (own cost). If you live in the Nepean area and would like to come along to the first meeting of this Group, please let Madeline know – she can be contacted on 02 4751 1272. Following the initial meeting, it is expected that the Group will continue to meet at this venue on the third Monday of each month throughout 2014.
Your local Polio Support Group needs you. If you are not in a Group then you do not know what you are missing!
Gary Fuller is your Polio NSW Support Group Co-ordinator , with the assistance of Barbara Fuller who actually is the polio survivor.
Our job is to provide a link between the Committee of Polio NSW (we are both Committee Members) and the Convenors of the twenty two Support Groups in New South Wales and the Australian Capital Territory. Barbara and I are always available to provide practical assistance and advice to Convenors if they ever need it.
Polio NSW set up a network of Support Groups throughout NSW in 1992. One of the aims of Polio NSW was to provide a supportive framework of assistance for polio survivors – the creation of Support Groups was one of the strategies developed.
We believes that this has been successful, Barbara has experienced very good advice and a tremendous amount of practical help from fellow Support Group members, in the short time she has been a member.
A complete list of the Support Groups, their Convenor and contact phone numbers was listed in the September Network News .
Membership of a Support Group puts you in regular contact with people who share similar problems and experiences. Members provide assistance to one another through their
Page 2 Network News – Issue 88 – December 2013 Polio NSW Inc shared polio history. Each individual brings a range of strategies which they have developed to assist them cope with the challenges of everyday living. The sharing of these resources can assist all members of the group. Membership of a Support Group will enable you to develop new friendships, provide a support circle of Polio NSW members to help you cope with the late effects of polio and give individuals the opportunity of taking a more active approach to living with polio.
We do what we can to help new members join a Support Group in their local area and also foster the establishment of new Groups. At the moment we would like to see this happen in Dubbo and in the Blue Mountains.
So at any time feel free to get in touch with Gary or Barbara Fuller. You can ring us on 02 9523 2428 (has a good answering machine at all times), write to us at the Polio NSW Office, or email us at [email protected] .
In Memory of Mary Le C lairlairlair
On Saturday 26 October, approximately 200 people attended the fundraising concert for Polio NSW at Parramatta Leagues Club in memory of Mary Le Clair.
We were entertained by Lisa Budin, Francesca Brescia, Kristy Lee, Roseanna Gallo and George Vumbaca. The band kept us all ‘bopping’ as we enjoyed all the songs of the 50s, 60s and 70s. We were treated to Lisa singing the Carpenter’s songs and guest spots by Roy Orbison and Elvis were highlights as well as songs from Sister Act performed by the entire cast!
Jace Pearson, the compère extraordinaire, kept everyone mesmerised with his incredible yodelling talent and his infectious ‘sparkle'. Lisa, with her band of helpers, including family members, truly provided us with a fantastic night.
The evening was topped off with a huge raffle of donated prizes, organised by Lisa and drawn by Jace.
The Committee would like to thank Lisa and all those who gave of their time to support Polio NSW and to celebrate the life of Mary Le Clair. A great night was had by all!!
Polio NSW Inc Network News – Issue 88 – December 2013 Page 3 by Ben Tipton
Ben is a retired professor from University of Sydney, originally from the United States and a long-time reside nt of the Blue Mountains. He attends the Hills District Support Group. During the recent fires Ben kept support group members up to date with events and entertained us with some humorous stories and now has some advice that we could all benefit from as polio survivors.
As a survivor, now three-fold, of bushfires in the lower Blue Mountains, it occurred to me that some of what we have learned may be more broadly applicable. Fires are not the only sort of emergency that confront us. We each, I think, have our own personal worst case scenario. The question I have posed myself in the aftermath of the fires is, am I, or rather are we, my wife and I, ready for those other sorts of emergencies? Our answer is, broadly, yes, partly because of the bushfire experience.
Thursday – I see ugly columns of smoke to the north, driven east to west by high winds. My wife is overseas, our daughters live in Melbourne; I am alone. Previous experience, close encounters in 1994, 2000, and earlier this year, tell me that this is dangerous. From the deck I can speak to my neighbours on both sides, sensible strong guys who will defend their houses. I remind them that my plan is to evacuate. I take the emergency box out of the closet in our bedroom and work from the rear of the house forward, packing. I receive the emergency call from the RFS, but I wait until a police officer knocks and advises me to leave. I agree, and ask him to tell my neighbours that I have left. He carries the box to the car for me, and I lock the house.
However, the police officer has no suggestions when I ask where the “safer place” is for our neighbourhood. I drive to our local shopping centre. There is a community church, with toilets, and a supermarket. However, in 2000 this centre was under threat as well. My plan is working, but there is a gap, a rather major one – I have no place to go.
The initial fire passes to the north, and the Police allow us to return ( many of the cars have dogs in the rear seats, and one lady has a bird cage beside her in the front ). However, the fire continues to burn to the north and west, an orange glow through the night. Daylight, and a continual convoy of helicopters carrying water to the burn just over the crest of the ridge. The RFS updates on their website are very good, but of course hours behind. I am fortunate; our lovely views also make us an ideal spot for the RFS to set up, and I hear their orders back and forth through the loudspeaker over the entire weekend.
Friday night – a crew from Canberra lights a back burn beginning at our rear fence. There is a lot of smoke, and I retreat inside. The house is smoky despite being closed; if I suffered from respiratory problems, I should have left when I was informed of the back burn. During the night the wind shifts, and our roofs are sprayed ( one of my usually sensible neighbours is drenched; what he was doing in his backyard at that point remains a mystery ). I have brought the emergency box back into the house, but left it by the front door, and left the external shutters down. Saturday – the fire in the northwest and the back burn in our valley continue to burn, but the immediate danger has lifted.
Sunday – helicopters put water on two stubborn pockets, one from the original fire and another from the back burn. My neighbours across the road see this, panic, dial 000, and order an emergency vehicle to come to pick me up. I have an amusing conversation with the driver while his partner calms my neighbour in the street. Another gap in our plan, however; we had not consulted in advance with all our neighbours. Page 4 Network News – Issue 88 – December 2013 Polio NSW Inc And so it goes for the next few days, monitoring the RFS site, waiting to see whether the main fire can be contained, and still packed and ready to leave if necessary. I have received offers of accommodation (thank you, Sue Ellis!), but clearly this was the major issue we had not considered, and thinking about that got me to thinking about other sorts of emergencies. Everyone will have different needs, and a different way of approaching a crisis, but the essential thing, I believe, is to have thought it through clearly beforehand, and to have a guide, a list of things to do, that you can follow. In a crisis you make mistakes. We have friends who lost their house; the husband saved the sterling silver, but forgot his wallet in the rush. Equally important, if you are incapacitated, a clear list gives those who assist you a program to follow.
So, our bushfire plan is to evacuate. Start early, the less mobile you are, the earlier. Consult with your neighbours. Get dressed, shoes, long sleeves, keys, wallet ( including list of medications, and alerts of my pacemaker and post-polio status ), watch, phone. Lower the shutters, and bring flammable objects ( gas bottle for BBQ ) inside, if there is time. The emergency box includes fire-specific items ( face masks, gloves, water bottles; see www.rfs.nsw.gov.au ), but also more general things ( toiletries, changes of clothes, towels ). We have plastic bags for the items to be added. From the rear of the house, in the bathroom, our prescription medicines; in our bedroom, clothes, repeat authorisations for medicines, phone chargers, chequebooks, documents (passports); from our studies, the backup drives for our computers. I keep an address book with phone numbers, but also usernames and passwords, particularly for our bank accounts. There is a list of all our credit cards, in case I should lose my wallet. You may have a file including the photographs of all the rooms of your house, in case you need to document your losses for the insurance company.
For us, it is fairly easy to generalise these preparations. We let our neighbours know when I will be alone, and I always carry the alarm remote with its panic button, so they can assist if necessary. If one of us were injured or ill, the list of items inside the emergency box can serve as a basis for assistance as well. Neighbours or emergency workers can use that list, and you will arrive at the hospital, for instance, with all of your prescription medicines and the repeat authorisations, plus a change of clothes, and your phone with charger. You never know. Our main concern is the possibility of my having a fall while home alone, of course. However, recently my wife woke in the morning with a severe attack of vertigo, virtually totally incapacitated. If she had been alone, then our plans would have helped to see her through.
by Susan Ellis, Seminar Co-ordinator
The following is the remainder of Dr Nolan’s first session which covers the ageing process and falls. This is followed by his second session titled, “Cough, Spit and Breathlessness”.
The Bones Beneath: Ageing, Bending, Breaking
The greatest risk to having a fracture is AGE and the incidence of fractures increases dramatically after 65, earlier in women than men because of post-menopausal osteoporosis.
Polio NSW Inc Network News – Issue 88 – December 2013 Page 5
Mortality after a fracture : as we age, the likelihood of surviving a fracture diminishes. An 80 year old who falls and fractures a hip has only a 20% chance of being alive one year later. That is how dangerous, how physiologically severe, a fall and a fracture is. There is only one treatment of a fracture and that is PREVENTION and a prevention strategy of things to think about, and discuss with your GP, should be formed. Dr Nolan’s advice is that we cannot afford to let a fracture happen.
Page 6 Network News – Issue 88 – December 2013 Polio NSW Inc Dr Nolan explained that walking is a very complicated process, affecting our balance and the centre of gravity and in most polio patients our walking is NOT NORMAL. Even if you don’t have significant weakness, you have started with an altered centre of gravity which then affects your standing balance, so you are already a risk patient because of abnormal standing balance. This is why, even without significant weakness, we have a greater risk of falling. In addition to balance, add a minor aberration in a footpath and you are over. This is why there is more to it than just what we are doing but it is the physical environment that also places us at risk.
Osteoporosis : Osteoporosis is where the trabecular thins and contains less bone. There are two types of substances: there is the tissue component called osteoid, the hard component which is the bone, and inside that is the marrow.
The protective girdering which is there to protect and support our hip progressively fades, which places the neck of the femur at greatest risk of snapping – it doesn’t take much of an injury when the bones are that weak for it to just snap!
Bone mineral density is evaluated by DEXA (Dual Energy X-ray Absorptiometry), performed on two areas, usually the spine plus right or left hip, two areas with best normal values and two areas of commonest fractures. Medicare rebates are given to those over age of 65 and/or having any concurrent illness and/or any history of a minor fracture. Polio NSW Inc Network News – Issue 88 – December 2013 Page 7 Our “T Score” compares us to a healthy control (a person under 50 of the same gender). Osteopenia is thinning of the bone. Osteoporosis is more severe and means the bone is significantly less dense than the average healthy control.
The risk of a fracture significantly increases with increased reduction in bone density.
A study in Toowoomba in 2010 performed DEXAs over a period of one year on 22 polio patients with a history of falls or fracture. It was found that there was a dramatic difference between the polio limb and the non-polio limb. The polio limb was 4 times less dense than the normal healthy control, whereas the non-polio limb was 1.5 times less dense.
Why is that? The reason for this is that our bones are only as strong as our muscles. The muscles create the tension on the bone that tells it to regrow, to remodel, to develop. With polio the muscular strain (strength) is gone causing the bones to waste more rapidly.
Conclusion: Osteoporosis is highly likely to be very common in polio patients, with polio limbs being more severely affected. It is for this reason that you must insist on the hip of your polio-affected leg being tested for osteoporosis.
What can we do?
Vitamin D replacement is very important for the prevention of fractures and when we look at why, it actually reduces falls. It is not just for the bones but also helps stop the falls, vitamin D is important for muscle strength and the maintenance of muscle tone. Dosage 1000 iu daily.
Damage control :
Page 8 Network News – Issue 88 – December 2013 Polio NSW Inc Osteoporosis is an increasing problem in all diseases in people over 65 and there are set strategies to deliver treatment. These should be discussed, along with concerns about falls and fractures, with your GP. Treatment depends on age. There are lots of therapies now available including drugs, vitamin D, calcium supplements and many others.
Other issues that impact :
Drug Therapy: As we age, we consume more medications and we are more likely to have more than one chronic illness. We also have to be aware of the risk of error. The more medication you take, the more likely that an error will be made by you, by your pharmacist, or by your doctor, as well as the likelihood that the medications will interact with each other.
High Risk groups:
Age >85 Chronic renal impairment Dementia Peripheral neuropathy
All of these cause an increase in disability. A person with a chronic illness should have a clinical review every two years – a one-hour review to maintain and keep on top of what is happening.
Surgery:
You need to have an advocate for when you end up in hospital. The reason being that complications are common, the development of confusion as we age increases, and the likelihood of a smoother outcome is much better if someone understands that you have had polio, even though you have lived with it for 40-50 years. They need to understand how it could impact on you now with the drugs of anaesthesia, with pain management or with your post-op chest care. The ideal person for this advocacy role is your GP who will keep your doctors informed of your issues related to polio.
Legal Issues:
Issues of competency and autonomy Maintaining a driving licence Defining our independence concerning end-of-life issues
These are issues that we all need to sit down and think about and have some idea or framework in place. At the very least have those who are closest to you to speak on your behalf; if you were unable to speak they could share that responsibility, because at the very last moment in your life you do want things to be done right for you. The only way that you can really have that happen is if you can voice that or someone can voice it for you, otherwise decisions might be made that are not in your best interest.
Cough, Spit and Breathlessness
The lung is best thought of as a system in series – if there is a problem at any one level then it can impact on the function of breathing.
Polio NSW Inc Network News – Issue 88 – December 2013 Page 9 It was in the early ’70s that the whole issue re-surfaced of breathing problems affecting people with previous polio. Christian Guilleminault from Stanford University worked on measuring breathing during sleep because polio people were complaining of having difficulty breathing at night and were waking up feeling awful. That was the beginning of our understanding of the fact that the upper airways are so important in the function of ventilation when we are asleep.
When awake we are less likely to be affected because our muscle tone in our upper airways is maintained by voluntary control; but when we are asleep we are reliant on automatic functions and so are in a position of compromise. When we lie on our back or side, our diaphragm is displaced and our diaphragm does 70% of our inspiratory breathing function. In addition to that, our upper airway starts to relax and collapse down and, if it is already narrowed, it could close during those phases of REM (rapid-eye-movement, deep sleep), where the whole body is virtually paralysed, except for the eyes and the diaphragm – this is to ensure relaxation so our muscles can recover.
Guilleminault started actively reviewing polio patients and he found that there were variable risks for people who were having breathing problems:
In the early phase of their polio, those in groups 1-5 definitely had breathing problems involving their chest and diaphragm and required some degree of mechanical ventilation but then recovered. Then as they aged and as post-polio sequelae occurred and muscles weakened subtly, breathing problems only affected them when asleep.
The second grouping 6-8 experienced no problems at all, they had lower limb disease and no breathing problems at the time and they had a normal sleep study. If they did have a sleep disturbance it was more likely to be due to irregular leg movements and/or fidgetiness which we now call the syndrome of Periodic Leg Movements (PLM) during sleep which has a greatly increased incidence in polio. It can be caused by a spinal nerve irritation and can manifest as sleep disturbance – the partner in the bed usually reports this activity.
Page 10 Network News – Issue 88 – December 2013 Polio NSW Inc The third grouping 9-13 did not need ventilation initially, had no respiratory problems, but they all had some throat problem at the time, requiring artificial feeding with a naso-gastric tube or had choking occasionally. These people also developed obstructive sleep apnoea and needed later treatment in order to protect the airway during sleep.
A Western Australia survey of 230 polio patients, of whom 206 had sleep studies, found that there were four most predictive factors of sleep-related sleeping problems:
• A previous history of mechanical ventilation • Current disability requiring wheelchair use for more than 50% of the day • Previous history of naso-gastric feeding or upper throat swallowing problems • Static lung function (breathing test done in GP surgery) less than 50% of normal
The three most common symptoms that people with sleep disorders report are:
• Disturbed sleep • Day time tiredness • History (from partner) of habitual snoring or guttural type noises or choking noises during sleep
There are many sleep medicine clinics throughout Australia who provide appropriate care for people with polio with all levels of breathing related problems.
In the normal population, 60% of men between 20 and 65 snore and only 30% of women; of the 60% of men who snore, approximately 18% of them have obstructive sleep apnoea. Of the 30% of women, only about 8% have sleep apnoea. Therefore, a male is more likely than a female to have sleep apnoea. Contributing factors include: men are generally heavier and more men smoke (although more women actually smoke now); alcohol consumption is higher in men than women. Alcohol is a significant modifier of airway function when we are asleep as well as brain recovery.
It was also found that polio survivors’ incidence of breathing problems was not gender biased, it was more based upon previous history and current disability. It was found, however, that there was a definite relationship between body weight, and if you have a BMI greater than 30kg/m2 then you were at greater risk of developing sleep apnoea.
So where is your diaphragm? It is at the top of the bottom-most rib that you can feel at the centre of your chest when sitting. When lying down it is at the level of a male nipple, it rises about 10 cm when you lie down which means you lose that volume for ventilation when you are asleep. If you then compromise that further, by adding another strain or resistance on the breathing system, then you are in trouble.
An analogy of how these systems are all connected is to imagine a tightly-coiled spring with a weight on the bottom, and then add further weights to see how far they would stretch. This is one way to think about what it is like to breathe. To breathe, the energy expended occurs only on inspiration, because our lungs are elastic and they will recoil on expiration – as you breathe out, the lungs will spring back. So our greatest challenge is to use energy efficiently to breathe in. If you put a series of springs one after the other it is going to be much harder to stretch the springs. Similarly, if we have the throat, the airway, the diaphragm and possibly what is below the diaphragm (eg 40kg of fat which needs to be pushed out of the way), then you have about four springs in a row which makes it almost impossible, especially when you are asleep and relying upon the automatic system to perform that process.
Polio NSW Inc Network News – Issue 88 – December 2013 Page 11 What side is best to lie on? It is better to lie on the right side; you get slightly better ventilation, whilst on your back you snore. Lying on your back can obstruct your airway.
Guilleminault became aware of breathing problems, mainly at night, because of the development of sleep medicine. Respiratory failure is when you don’t maintain adequate oxygen levels or normal carbon dioxide levels. If your oxygen level is less than 60mm of mercury, or carbon dioxide greater than 50mm, then the system is in respiratory failure. It was found that with polio patients who were in respiratory failure, the problem could be traced back to what was happening during sleep. It was found that if the night problem is treated and reversed then the patient felt better during the day and could maintain normal oxygen levels during the day because the muscles worked better when awake and alert.
Mechanics of breathing: The upper airway is where the main problem of sleep apnoea occurs, then the central airway, the driving pressure or the pump, and then we have what is below the pump, so if there is displacement required of abdominal content that can add to the strain.
There is a high correlation between swallowing problems and sleep apnoea and it is recommended that tests should be performed to localise the problem. A swallowing problem occurs when there is a weakness of the crico-pharyngeus muscle (a trapdoor at the top of the gullet) which is used to stop food from regurgitating or going down too early before being masticated in the mouth. This is diagnosed by doing a video swallow – this is not a normal barium swallow but a continuous video film from the mouth down past the throat, performed by a speech therapist in an x-ray department whilst trying different consistency of foods. ENT clinics and/or speech therapist services will perform this study.
As there is a high incidence of reflux disease in post-polio a dynamic study is needed: the water siphon test . If the swallow study looks normal then while lying down with barium still in the abdomen, sip water through a straw - this can precipitate acute reflux right up and into the larynx and into the lung causing mini aspirations. This test localises where the problem is. There are various treatments available.
What was found in WA is that the ageing process, ie the weakness and disability that will happen to us all as we age, starts earlier in polio patients and predominantly manifests as a weakness of muscles.
Could we find any evidence that the polio patients’ breathing muscles were weaker? A study was done looking at how many years since the onset of polio and how breathing muscle strength compared to 1,000 normal controls of the same age. It was found that the
Page 12 Network News – Issue 88 – December 2013 Polio NSW Inc breathing-out and the breathing-in muscles of the polio patients were falling by 7% per year greater than the average loss of power of a non-polio patient. So even if your primary illness didn’t specifically involve your diaphragm, as a group there appeared to be slow deterioration of breathing muscle strength with age and it seemed to slowly progress with aging, starting around 20 years after the onset of polio.
It is felt that probably everyone with previous polio should have breathing muscle evaluation and if there is any evidence of a fall in muscle function, ie below or around 50%, then have a diagnostic sleep study.
COPD (Chronic Obstructive Pulmonary Disease)
There are two problems that can occur with the airways. The elasticity of the lungs is impaired, ie the tubes might be alright but the lungs don’t empty properly, OR the airways might be severely impaired, thickened and narrowed and we can’t get the air through.
Types of airway disease : Emphysema, chronic bronchitis (inflammation), bronchiectasis (chronic inflammation with damage and chronic infection), intermittent obstruction (later onset asthma), environmental exposure.
If you already have mild upper airway weakness and then add to that lower airway disease then it will be harder to breathe and then you become more symptomatic. To measure for impaired weakness your GP can use a spirometer. If there is impairment then there is airways disease and you need various treatments.
The most common cause around the world of lung damage is by fossil fuels ie cooking on an open fire, inhaling fossil-fuel smoke, it is far worse than cigarette smoke. In 1945, 75% of adults smoked and now it is only 21% – unfortunately 54% of these are women. Now more women die from lung cancer than from breast cancer. There is nothing good about a cigarette. There are also more and more instances of lung disease from passive smokers, people who have lived or worked with a smoker.
Other causes of lung disease: Airway irritants – Work related : freezing fresh fish using monosodium glutamate which can destroy lungs through chronic asthma. Recreational : Mulch on gardens – 20% of people are allergic to a fungus (aspergillus) which can also be found in potting mix and can precipitate acute breathing issues. It is recommended to use a mask when using potting mix and work in a ventilated area.
Worldwide, COPD is the fourth leading cause of death. It was found during the investigation of breathlessness in WA that 25% of polio people who suffered with breathlessness had unrecognised airways disease. Polio itself doesn’t affect the airways but recurrent aspiration affects the airways, ie burning of the airways, and some people with uncontrolled reflex and pharyngeal problems can also cause a problem. For most of these people it was an acquired disorder on top of their polio that was compounding their breathlessness.
Co-morbid disease: A polio patient with chronic kypho-scoliosis, which effectively squashes the lungs, has an increased risk of breathing problems. The chest wall over time becomes rigid and the patient cannot expand the chest wall which means the lungs cannot expand.
Polio NSW Inc Network News – Issue 88 – December 2013 Page 13 Obesity: Lungs can also be squashed due to being overweight. The diaphragm is elevated way above the nipples because it is being compressed by a large abdomen. Generally, pear-shaped obesity (mainly around hips and upper legs) has no respiratory consequences and actually has a lower incidence of heart disease whereas apple-shaped obesity (around the abdomen) is bad for breathing and bad for the heart. A personalised program with a realistic goal of a 10% weight loss in 12 months is recommended. Incremental advances moving towards a more healthy weight range will have a sizeable impact on the breathing ability.
Evaluation of the upper airway can be made simply by looking into the mouth, with the tongue poked out, and if you can see down the back of the throat there isn’t a blockage to air but if you can’t see past the tongue then there is a big blockage to air. There is a scoring system of 1-4 which can be used to determine who might be at risk of breathing problems.
If you have got respiratory muscle weakness or airway disease at any level you are at a higher risk of developing an acute infective exacerbation and need to have a preventative and emergent plan in the event of infection.
What can we do? If you have respiratory problems with polio you need to have a breathing test, address the issue of exposures at work or recreation (eg potting mix), stop smoking, eat properly (not to be too thin and undernourished or too fat), exercise (a balanced approach), optimise activities of daily living (ADL) (don’t exhaust yourself, do things smarter rather than harder), have a regular medical review, and early intervention with acute illness.
For anyone with previous polio and respiratory problems if you develop flu-like symptoms and you fail to improve within 48 hours then you must see your GP. The earlier intervention is sought, the better. If pulmonary infection and airflow obstruction is not controlled it becomes a repeating cycle. Recovery should be complete within 6 weeks.
Page 14 Network News – Issue 88 – December 2013 Polio NSW Inc General approach to people with chronic lung disease:
• Vaccination for pneumococcus and influenza • Therapy and rehabilitation • Avoiding exposure to aspergillus • Exercise is the most effective way of keep mucous out of the lungs, and add to that inhaled saline • Check for other related issues, eg untreated asthma, sinus disease, reflux, GOR
.
A Last Plea from Dr Nolan:
As a group, continue to expand the understanding within at least the medical community and if possible as well within the wider community.
Don’t ever underestimate your own personal story and its ability to create change, to inspire, and to have impact.
Polio NSW Inc Network News – Issue 88 – December 2013 Page 15
by David Stern, Senior Information Officer , Spinal Cord Injuries Australia (SCIA). Reprinted with permission from SCIA’s “Accord” Newsletter, Winter 2013.
Most people only visit a cemetery for the funeral of a family member or friend, or on important family and communal anniversaries. Cemeteries, however, also tell us a lot about our heritage, history and culture.
By the 1840s, Sydney’s Devonshire Street Cemetery was close to being full so another larger site was needed. In 1862 the government purchased 80 hectares from the estate of Edward Cohen. The site was chosen for its relative isolation and proximity to the new railway line to Parramatta. Garden of Remembrance, Rookwood Cemetery
Rookwood Necropolis has become the largest cemetery in the southern hemisphere, stretching over 300 hectares. Over a million people are buried there, including some of Australia’s most notable figures. Among them are:
• respected statesmen such as NSW Premiers Jack Lang and Joe Cahill, and Australia’s first female Mayor, Lilian Fowler; • leading business figures James Toohey, David Jones, John Fairfax, John Gowing and Bing Lee; • notorious characters such as Jimmy Governor, Abe Saffron and Sally Anne Huckstepp; • arts personalities including the poet Kenneth Slessor, and the songwriter of Advance Australia Fair, Peter Dodds McCormick.
Other notable ‘residents’ include well-known Sydney eccentric Bea Miles, suffragette Louisa Lawson, and James Calvert, a member of explorer Ludwig Leichhardt’s first expedition into the interior. The epitaph on the grave of Jacob Pitman, the advocate of shorthand, is written phonetically, describing him as an “arkitekt” who “introduist fonetik shorthand”.
There are many specific memorials that commemorate significant events and groups. These include the Sydney War Cemetery and Garden of Remembrance, a Holocaust memorial, and the Circle of Love which is a shrine dedicated to stillborn children or those who died in young infancy.
Tours of the cemetery are run by the Friends of Rookwood. Themed tours include Tales from the 20 th Century, Plague and Pestilence, Ships and Shipwrecks, Murder and Mayhem, 19 th Century Sydney, and ANZAC and Convict Heritage.
For more information on the tours visit
There are accessible toilets at a number of locations in the grounds of the cemetery and at Reflections Café. For more information on Rookwood Cemetery, visit
Page 16 Network News – Issue 88 – December 2013 Polio NSW Inc . + . + . + . +
We have had a suggestion relating to the Post-Polio Health International document on Anaesthesia by Dr Selma Calmes which was distributed with the September issue of Network News. Member Dr Ian Neering, past Associate Professor of Physiology and Pharmacology at the University of NSW, has previously written articles relating to this subject in Network News (Issue 64, June 2004, pp 9-11) and in Polio Oz News (Volume 1, Issue 2, September 2011, pp 7-9).
Dear Nola and Susan
Congratulations on another bumper issue of Network News .
I was particularly impressed with the single page document detailing issues related to anaesthesia of polios. That will be a very useful addition to your other major document. Might I suggest a small addition if or when you revise the document? Anaesthetists are often required to monitor blood gases during or after surgery. With post polios, especially those with long-term respiratory issues, PaCO 2 (arterial carbon dioxide levels) may be permanently elevated. The body of such polios has become acclimated to these levels and the polio person notices no deficit related to the higher CO 2 level, that is, this is normal for the particular person.
Anaesthetists tend to work by the numbers and, if they see elevated CO 2 levels, they are likely to keep a patient connected to the ventilator for much longer than necessary. If this is likely to be an issue, then I would advise suggesting to the anaesthetist that carbon dioxide be measured prior to surgery to establish baseline levels. Hope this helps and keep up the good work.
Cheers, Ian
It is always nice to receive positive feedback from our members. Following her raf fle prize win at our last Seminar, Robin Ruys sent this letter to Committee Member Alice Smart .
Dear Alice
I have so much appreciated the lovely large warm textured blanket which you so kindly donated to the PNSW Seminar day. As one who does a little craft work I was amazed that the rug seemed to be knitted in one piece. That was an amazing thought.
Whenever I attend PNSW events I am humbled by the efforts of others. But there is also a sense of relaxation – others have their struggles, many of them heroic, and nobody is in competition as so often is the feeling when attending some other types of organizations such as the musical ones I am involved in.
You have contributed much to the Network over many years and I salute you and others who make it possible for people like myself, still involved in working life, to experience the benefits of belonging to the Network.
All good wishes and thanks
Robin Ruys
Polio NSW Inc Network News – Issue 88 – December 2013 Page 17
Thursday 8 to St Joseph’s Baulkham Polio NSW will host the 2014 Sunday 11 Hills Centre for May 2014 Reflective Living Polio Health and Wellness Retreat
WATCH THIS SPACE IN UPCOMING ISSUES OF NETWORK NEWS 2014 Seminars FOR SEMINAR NEWS AND FOR DETAILS OF OUR 25 TH ANNIVERSARY CELEBRATIONS
Gillian Thomas President [email protected] 02 9663 2402 Susan Ellis Vice-President [email protected] 02 9487 3094 Merle Thompson Secretary [email protected] 02 4758 6637 Alan Cameron Treasurer [email protected] 0407 404 641 Committee Members ( for contact details please ring or email the Network Office ): Charles Anderson, Anne Buchanan, Nola Buck, Barbara Fuller, Gary Fuller, Alice Smart and John Tierney
Office staff: George, Carlie and Fatma 02 9890 0946 [email protected] Volunteers: Nola, John 02 9890 0953 Susan Ellis Seminar Co-ordinator [email protected] 02 9487 3094 Alan Cameron Website Webmaster [email protected] 0407 404 641 Mary Westbrook Q’s about polio & PPS [email protected] 02 9890 0946 Nola Buck/Susan Ellis Co-editors Network News [email protected] 02 9890 0946
The Australian Polio Register was established by Polio Australia in October 2010 to gather information on the numbers of polio survivors living in Australia today, whether or not they contracted polio in this country. There are currently more than 2,000 polio survivors on the Register and this number increases daily. To make the Register truly reflective of the unmet need for polio services throughout Australia, all State polio networks are urging every Australian polio survivor to join the Register which is available on Polio Australia’s website at
Page 18 Network News – Issue 88 – December 2013 Polio NSW Inc Volume 3, Issue 3 Polio Oz News
September 2013 — Spring Edition
‘Walking’ for Polio Australia by Mary-ann Liethof Gail trekking 8 kms around Editor Flinders in Westernport.
Sunday 1st September was a All 10 registered “Melbourne lovely, sunny Spring day in Meander” team members were Melbourne, as our “Melbourne busy finding supporters to Meander” team gathered at sponsor them in the lead up to Birrarung Marr, on the banks of the event—and what a fantastic the Yarra River, for an 11.00am result! Polio Australia is start. Polio Australia joined in delighted to have received a with hundreds of individuals and total of $5,290 from around 90 families walking and wheeling generous donors for this event. for this year’s “Walk With Me” However, veteran ’walker’, fundraising event organised by Fran, was a clear winner, Scope in Victoria. attracting $1,300 from a Polio Australia’s “Melbourne number of dedicated followers. Meander” team ended up Fran was one of only two consisting of 18 polio survivors ‘walkers’ in last year’s event, so National Patron and current (photo below), their families she had a distinct advantage! President. This year, John will be and friends in Melbourne, with walking as a member of Polio Fran Henke (photo right) and The other ‘veteran’ is Dr John Australia’s “ Parramatta her supporters, Raji, Kabir and Tierney, Polio Australia’s Promenade” team on Friday 13th September. The New South Wa l es “Walk With Me” fundraising event has been organised by Northcott.
As this is being written, the 7 team members (more ‘walkers’ would be most welcome!) have managed to raise a healthy $6,911 from scores of enthusiastic donors. It’s not too late to make a donation - every dollar helps! Both team pages will be open to donations for some weeks . . .
All in all, Polio Australia is absolutely delighted with the positive energy and generosity underpinning these two events, all thanks to our post polio community, families and friends, far and wide. We salute you! National Patron: Dr John Tierney, PhD, OAM Page 2
Polio Oz News
From the President Polio Australia Inc Representing polio survivors Fellow polio survivors, now that the Balnaves throughout Australia Foundation three year grant is coming to an end, at Polio Australia we have made some progress in Suite 119C, 89 High Street diversifying the funding base of the organisation Kew Victoria 3101 through a range of measures that we have been PO Box 500 developing over the last year. Kew East Victoria 3102
Phone: +61 3 9016 7678 One of the most promising avenues of funding is re E-mail: [email protected] -establishing our link with Rotary. Rotary Website: www.polioaustralia.org.au International has done tremendous work in helping to eradicate polio from the world and it is now only Contacts Dr John Tierney endemic in three countries. But Rotary's earlier President work with polio survivors between the 1920's and President - John Tierney 1950's in Australia is all but forgotten. Back in the 1920's Rotary [email protected] founded the Crippled Children's associations across Australia and Vice President - Gillian Thomas continued great work on behalf of polio survivors right up to the [email protected] 1960s. Cont’d P 3 Secretary - Jenny Jones [email protected] From the Editor
Treasurer - Brett Howard For those of us living in continuing to raise [email protected] the Southern awareness and funding hemisphere, “Happy for projects like the next National Program Manager Springtime”! If you’ve P o l i o H e a l t h a n d Mary-ann Liethof been paying attention, Wellness Retreat in New [email protected] you’ll know that this South Wales (P 10). Of edition of “Polio Oz course, we are News” is fairly close on absolutely delighted with the heels of the late the “Walk With Me” Inside this issue: Winter edition, so I fundraising effort, which “Walking” for Polio Australia 1 Mary-ann Liethof have now caught up. has been far more Editor successful that we Australia has since held Touched by Polio Exhibition 2 anticipated, thanks to Unless otherwise a national election and your generosity! stated, the articles in Rotary Connections 4 we now have a new Polio Oz News may be coalition government, There are several reprinted provided AT Wait Times Project 5 that they are with Tony Abbott as interesting articles to reproduced in full Prime Minister. Regular read in this edition, Update on the NDIS 6 (including any readers will know that including a walk down references) and the Queensland Health 7 we have been actively memory lane with author, the source and l o b b y i n g Graeme Johnson’s Polio Australia Inc are The Great Mobiliser 8 acknowledged in full. parliamentarians on a bi orthotist, Walter Burt (P Articles may not be -partisan basis over the 8), and a warning to Polio in WA: a history 9 edited or summarised past few years. So Polio hospital patients to keep without the prior Australia is very asking questions (P 7). Supporting Polio Australia 10 written approval of interested to see if any Polio Australia. The Enjoy! Network Members: WA 12 views expressed in funding will be this publication are forthcoming to support Post Polio Conferences 13 not necessarily those polio survivors from our “Spring is the of Polio Australia, and n e w g o v e r n m e n t The Things I’ve Done 14 any products, services time of plans or treatments representatives . . . and projects.” News Around the World 15 described are not In the meantime, you Polio Alerts 18 necessarily endorsed ~ Leo Tolstoy, can see that we have or recommended by Anna Karenina ~ Polio This Week 22 Polio Australia. not been idle in Page 3
Polio Oz News
From the President ( C o n t ’ d )
Polio Australia is now rebuilding this connection. $12,000 dollars with the We have speakers going to Rotary club meetings Sydney team just having in Melbourne, Sydney and the Hunter Valley, re- its nose in front. But it’s establishing the link with the "We’re Still Here" not too late to donate. message. Every club we go to we receive a Just click onto the Polio donation for the work of Polio Australia. If you Australia website then would like to join the speakers panel, please Walk with me and follow contact Mary-ann. This speaking program is the easy instructions on laying the groundwork for developing links how to donate to one of between Polio Australia and Rotary at a higher the team members taking level and I hope to have positive news on this part. front in the coming months. Take care, Finally, thank you to everyone who is joining or John John Tierney at last year’s donating to our "Walk with me" teams: the “Walk With Me” event Melbourne Meanderers and the Parramatta Dr John Tierney OAM Promenaders. So far we have raised more than President and National Patron Polio Australia
Touched by Polio: from casts to catharsis
Following a very successful launch of the “Touched by Polio” art works in March 2013, Polio Australia is delighted to announce that the remaining fourteen pieces are available for viewing and purchase throughout September 2013 at the studio @ flinders Gallery, as part of their “Childhood Memories” exhibition.
The Studio @ Flinders Gallery is a unique art Gallery situated next to the park in the delightful village of Flinders, on the southern end of the Mornington Peninsula. The Gallery was established in 2004 by a group of Ceramic Artists. Initially ceramics was their emphasis, but they soon introduced many other forms of creative art and craft and feel very privileged to have the work of some of Australia’s finest crafts people. They have blown and slumped glass, textile artists, jewellery makers, wood workers, visual artists and sculptural and functional ceramics.
(L-R): Butterfly; The Party Frock; My Elusive Dream; Splish, Splosh, Splash! Page 4
Volume 3, Issue 3
Rotary Connections
The extraordinary work undertaken by Rotary International over the past three decades towards eradicating polio worldwide is an achievement that every one of Australia’s polio survivors is aware of and fully supports. No one who lived through the pre-vaccine epidemics ever wants to witness the effects of this vicious virus on the community again.
However, in addition to the lengthy “End Polio Now” campaign, Rotary International has an even longer history with polio than you might know, having helped establish community organisations over 80 years ago to support Australian children and adults who had contracted polio.
In 1925 the Rotary Club of Sydney sent one of its Directors, Mr B How can Rotary Clubs R Gelling, to the USA to examine the support that Rotary was then participate? providing to polio survivors. There he was introduced by Paul This might be done in the Harris (Rotary’s founder) to Mr Edgar ‘Daddy’ Allen who had following ways. recently established the National Society for Crippled Children. Paul Harris and Edgar Allen were fellow Rotarians and close friends By inviting a polio survivor to and in the early 1930s they framed the Declaration of Rights of speak at your Rotary Club. Crippled Children. Paul Harris became the Patron of the National Contact Polio Australia to Crippled Children’s Society and for the rest of his life maintained a book. keen interest in the support of polio survivors. By challenging your Rotary Club In December 1929 the Rotary Club of Sydney convened a meeting to see how many members are of ‘concerned citizens’ in the Sydney Town Hall and as a result the polio survivors, and how many New South Wales Society for Crippled Children was established. they know of and/or can track The then President of Sydney Rotary Club, Sir Henry Braddon, down to sign them all up to the became the first President of the fledgling New South Wales Australian Polio Register – Society for Crippled Children. In fact, of the seven state wide either online or by downloading community organisations around Australia once known as the paper version, which can “Crippled Children Societies”, six were established by Rotary. then be posted back to: Polio Australia, PO Box 500, Kew Polio Australia is now inviting Rotary International’s East, Victoria, 3102. Australian Districts and Clubs to explore strengthening relations with polio survivors – particularly during Polio Australia’s observation of Polio Awareness Month in This might entail sourcing October in conjunction with Rotary’s celebration of World people through links with other Polio Day on 24 October. clubs, especially those that attract a high number of retired people such as golf clubs, or aged care facilities, and other community services.
Polio Australia has included a section in the “How did you hear about the Australian Polio Register” section of the Registration Form where registrants can select “Rotary” and provide details of the Club which made them aware of the Register. This will help to track which Rotary Clubs are most active.
Check Polio Australia’s ‘Rotary Connections’ webpage here for more details. Page 5
Polio Oz News
‘ W a i t - times’ Project
The following information on the assistive technology ‘Wait-times’ Project was provided by one of Polio Australia Clinical Advisory Group Members, Natasha Layton. Natasha is an Occupational Therapist and Associate Researcher at Deakin University. Although this project was based in Victoria, it is undoubtedly reflective of wait times for assistive technology across the country.
The State Trustees funded the Aids and Equipment Action Alliance (AEAA) to conduct the ‘Wait-times’ Project. The purpose of the project is to investigate wait times for assistive technology (AT) in Victoria and to present policy options. The project is based on concerns with the wait times Summary of Key Recommendations faced by Victorians eligible for equipment funding Three recommendations were made on the basis through the Victorian Aids and Equipment of the literature and of the data collected by the Program (VAEP), which operates as the Statewide ‘Wait-times’ Project:
Equipment Program (SWEP). 1. An entitlement approach. That is,
In 2010, the Equipping Inclusion Studies provide approved equipment at time of demonstrated that for many Victorian consumers, need, similar to the Pharmaceutical Benefits the partial funding subsidy that VAEP provided Scheme. Increased resources are required did not deliver hoped-for outcomes. The majority to implement this recommendation. of VAEP Scheme users require multiple AT 2. ‘Purchase and reimburse’ model. That devices, yet no safety net exists to support the is, improve SWEP’s flexibility by need to find multiple top-up funds. Economic reimbursing the subsidy amount. This evaluation identified that: recommendation has organisational and short-term resource implications. . . . elements of AT cost are carried by 3. ‘Concurrent wait-list’ or ‘approved in funders (including AT users) other than the principle’ model. Consumer enters the Victorian Aids and Equipment Program; ‘wait period’ at the point of indicative need; and . . . key elements of AT were not in other words, the point when a need is covered at all. This results in those in need identified even if not fully assessed. being at risk of going without needed AT Therefore, the time-consuming processes of and the outcomes it enables. On criteria of full assessment, equipment trial and report both efficiency and equity, this finding has writing occur concurrently with the SWEP policy implications for the extent of subsidy wait period. support deemed appropriate for this low income and special needs group. (Layton et The full Executive Summary of the ‘Wait-times’ al, 2010:13) Project can be read here. Page 6
Volume 3, Issue 3
Update on the National Disability Insurance S c h e m e
The following update on the the full scheme will roll out To improve the inconsistency NDIS was sourced from the across Australia between 2016 in disability care and to make Chronic Illness Alliance (CIA) and 2019. There was more effective use of funding, September 2013 Newsletter. widespread discussion on the the scheme takes an Polio Australia is a member of relationship between chronic insurance approach to the CIA, and we thank them for illness and disability which is, of minimise lifetime costs and permission to reprint this course, ambiguous but the maximise opportunities and information. focus of DisabilityCare will participation. be function and functional The Chronic Illness Alliance has impairment, regardless of Eligibility will depend on 55 member organisations, both diagnosis. function and not diagnosis state and national. The aim of and give people choice and the Alliance is to build a better As you can see in the highlights control over their lives to focus in health policy and of Dr Tracy’s talk, Australia has maximise people’s health services for all people had a great deal to catch up on opportunities to participate in with chronic illnesses. in the area of community the social and economic lives disability support and of their communities. The CIA’s preferred definition of DisabilityCare is a significant chronic illness is as follows: beginning. There has been a The disability must be permanent and there must be "…an illness that is permanent heavy reliance on our sector to provide this support and many reduced functioning in self- or lasts a long time. It may get care, communication and slowly worse over time. It may Alliance member organisations work with families where there mobility requiring ongoing lead to death, or it may finally support. go away. It may cause are severe functional permanent changes to the impairments whereas other A person must be under the body. It will certainly affect the member organisations provide age of 65 years to qualify. person's quality of life." information and education to prevent severe impairment. Most funding goes to individual support packages Update on the NDIS It is now important that each (ISP) allowing people to and People with member organisation considers purchase services that best Chronic Illnesses how DisabilityCare might meet their needs and provide and Genetic Conditions improve the lives of its clients. opportunities to participate. In July the Chronic Illness Some of our members might Alliance provided members with like to explore opportunities to ISPs will be delivered by the opportunity to learn more become registered providers providers who will compete to about the NDIS, now known as with DisabilityCare or to think provide innovative supports DisabilityCare Australia. Some about the possibility to train that assist people to of our members have had little disability workers on the needs participate in their time to catch up with the roll- of the people they represent. communities as fully as they out of DisabilityCare, since it are able. became law in March this year. Highlights from NDIS Forum A support package is Out of the 27 OECD countries developed with an Agency. It This wonderful presentation by Australia is 21st in Dr Jane Tracy from the Centre contains the person’s goals employment of people with a and aspirations and the for Developmental Disability disability and 27th in relative supports to meet them. Health, Monash University, was poverty risk for people with a informative and brought us up disability. In the past the to date with the pilot projects. support for individuals was With launch sites in: based on: how their disability Hunter region NSW; was acquired (e.g. at work or South Australia (for children); a traffic accident), diagnosis, Tasmania (adolescents); and personal resources and their ACT and Barwon region ability to advocate for Victoria; themselves. Page 7
Polio Oz News
Report: Queensland’s Health Watchdog by Nance Haxton
Source: The World Today/ABC News - 2 September 2013
A report from Queensland's health watchdog is calling for medical workers in hospitals to take the concerns of patients' relatives more seriously.
The Health Quality and Complaints Commission analysed 172 complaints over three years and found more than 40 per cent of them were serious. It found that hospitals failed to recognise family warnings about the rapid deterioration in the condition of their relatives.
Assistant Commissioner Dr John Rivers says ignoring warnings can cause harm to patients.
"These are a series of complaints about deterioration, most of them relatively severe events where there was potential for significant patient harm," he said.
"What we've learned from this is that deterioration can be a very rapid process, so it's important to respond to any signals that alert you to that.
"And particularly when patients and their families and their carers feel that there's been significant He says a lot of the problems are often systemic. deterioration that often should prompt a rapid "The easy response is to blame individuals, but in clinical response." fact many of these clinicians probably had high Dr Rivers says hospitals can improve their workloads and many sick patients," he said. responses to concerns raised by families. "[Doctors] obviously can't be with them all at the "That's particularly true with ill patients and with same time so much of the issue may be systemic children and for people where there is substantial rather than individual." risk of sudden changes in the clinical condition, unwell patients," he said. Polio Australia would like remind readers about an article published in Polio Oz News in June Dr Rivers says the complaints the Commission 2012 titled “Medical Misadventure: A preventable looked at only represent a "tiny percentage of tragedy” (P 11) relating to the death of Vivian events in the healthcare system". However, the Endean, and written by his partner, Fleur Rubens. Commission recommends doctors rapidly reassess a patient's condition if there are concerns from a Fleur wrote: family member. “I was never too happy with his progress, but
"Everybody involved in the care needs to be alert when friends came to visit they found him better to the process of clinical deterioration," Dr Rivers than I had described. His complexion was rosy. I said. felt that maybe I was exaggerating his condition, being unduly negative, expecting too much etc. "If anybody, the patient, the actual family or the After Vivian’s death I learnt that what look like a carer and anyone in the clinical team - the healthy ruddiness is in fact a sign of excessive nursing staff and the medical staff - are carbon dioxide in the blood.” concerned about deterioration, then there needs to be a rapid reassessment of the clinical One of her recommendations was to: situation." “Listen to your own instincts. Keep asking questions until you are properly listened to.” Page 8
Polio Oz News
Walter Burt — The Great Mobiliser by Graeme Johnson Co-convener, Gold Coast Polio Support Group
Fifty years ago I was a 19 year old polio survivor who had completed 3 years of my Engineering Degree and had just been offered a cadetship with Australian Consolidated Industries. The first item I intended to buy was a caliper with an articulated knee. After saving for a while, the day arrived to start negotiations to purchase a new caliper, and that’s when I met Mr Walter Burt.
Like many disabled people, I will always be indebted to this kind and competent splint maker. Mr Walter Burt now lives on the Gold Coast, and throughout his life he was responsible for mobilising many a disabled person. He was born at such an age that he was a young man when the polio epidemic of the 1940’s hit Australia.
Mr Walter Burt recently gave a talk to the Gold Coast Polio Support Group. He explained that during these epidemics, the availability of material was of great concern after the war. However, they improvised, as they had to succeed in providing the disabled person with some type of mobility.
This gentle giant of a man is an inspiration to all concerned for his unrelenting effort in ensuring all disabled people were adequately mobilised to his satisfaction.
Our paths of life crossed now and again and I remember one episode when I was supplied a caliper by another technician. I could not wear the caliper because it was made to a drawing and not to the demands and shape of the individual. Fortunately for me at the time, Walter happened to pass by the dress cubical and I relayed my concerns. He immediately confiscated the caliper and arranged for a new caliper to be supplied to his design.
Today I still wear the caliper Walter designed and built. Ten years ago our paths crossed again when Walter was disposing of old equipment at Lifeline on the Gold Coast, and we were able to renew our friendship.
This photo (below) shows a complex brace of the 1950’s, whereby the patient suffered considerable inconvenience. This polio victim needed support for his trunk, as well Chest Brace as his knees, and respective legs.
It must be appreciated from the old This illustrates photographs that designs are limited by the the method of availability of materials and the extreme straightening a lack of interchange knowledge. polio body in the early 1950’s. Notice in this particular photograph, leather is used extensively and the leather corset It is a would have been very uncomfortable. cumbersome contraption built from steel and leather basically, but again, without such devices the individual would not be mobile.
Complex Body Brace Page 9
Volume 3, Issue 3
Poliomyelitis in Western Australia: a history
SUNDAY 22 September at 2pm (Following AGM which commences 1.15pm) Para-Quad Industries Hall 10 Selby Street Shenton Park 6008
Book launch and speech by Professor Fiona Stanley AC Second speaker Mr Kevin Lehane
Please RSVP by 15 September 2013 Ph: (08) 9383 9050 / email: [email protected]
(same contact details to place a book order)
This book is dedicated to the more than 2000 polio survivors living in WA many of whom have contributed and recorded their experiences with polio and the effect it has had on their lives and those of their loved ones and also to the health personnel who coped with polio both in the acute and recovery stages. Today late effects of polio have emerged as a new and growing problem. So as the numbers of WA polio survivors remaining diminish with the passing of time, this book serves as a timely reminder to future generations of past battles fought to conquer this virus that left such a devastating and disabling legacy on its victims.
'Old polios' may fade away but here their memories of the polio battle won, linger on.
Dr John Stokes Niblett CSM, MBBS, FRACR, FAChPM 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 July to 31 August, 2013: Hall of Fame ($1,000 plus)
Name Donations - General
John Tierney $2,500
Total - $2,500 Significant Donations
Donation - General PolioSA Robert Hannan Arthur Dobson Bonita Mason
Total - $1,178.95 Fundraising Campaigns Walk With Me and Rotary Clubs of Australia
Name Donations - Walk With Me “Melbourne Meander” Team (as at 12/9/13) $5,290.00 “Parramatta Promenade” Team (as at 12/9/13) $6,911.00
$12,201.00
Name Donations - Rotary Rotary Club of Kew (Vic) $500.00 Rotary Club of Maitland Sunrise (NSW) $750.00
$1,250.00
2014 Polio Health and Wellness Retreat
This is an early notice to advise that the 2014 Retreat will be held at St Joseph’s Centre for Reflective Living in Baulkham Hills, New South Wales. The dates are Thursday 8th May to Sunday 11th May. Polio Australia held its first Retreat at this venue, which is a lovely, peaceful environment, and very conducive to sharing and learning new information. It is also one of the more modestly priced venues, which means we can pass on the savings to participants.
As with all our Retreats, Polio Australia has already made several funding submissions to philanthropic trusts to subsidise the cost. We were recently advised that we were successful in receiving a $5,000 grant from the IM and SK Families Fund, a sub-fund of the Australian Communities Foundation. There are several trusts yet to respond.
More information will be provided in the coming months. Page 11
Volume 3, Issue 3
Keeping Polio Australia Viable
When Polio Australia campaigners went to Canberra in June this year, we took along a “Proposal to support polio survivors” which details why a better equipped organisation in the form of financial and human resources would not only allow Polio Australia to run its current programs more efficiently in regards to community/patient education, it would also facilitate the development of a raft of other innovative programs to ensure Australia’s polio survivors are well supported.
Ideally, government funding is required to strengthen Polio Australia so that it has adequate resources with which to fully realise the Federal Government’s Standing Committee on Health and Ageing’s Recommendations proposed in the “Discussion Paper on the Late Effects of Polio/Post-Polio Syndrome”.
However, Polio Australia recognises dependency solely on federal funding is not sustainable and has planned a number of funding revenue wells to carry the service through its projected thirty year service requirement. And ongoing fundraising must be one of those strategies.
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 Page 12
Volume 3, Issue 3
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 the Post Polio Network of WA. The following article was provided by PPN of WA’s Executive Officer, Tessa Jupp.
The West Australian Polio group in Perth started Free country clinic visits were made to Bunbury, with a public meeting held in the PARAQUAD hall Busselton, Albany, Narrogin, Kalgoorlie and on 24 August 1989. Prior to this, a meeting for Geraldton in that first year as well as the free polio survivors had been held in Bunbury 23 June, weekly evening clinic in the metropolitan area, advertising that new information was available on based at ParaQuad. Numbers continued to swell post-polio. Information from this meeting had to the 2,200 polio contacts in WA to-date and filtered through to Tessa Jupp, who had been returns of the questionnaire that Tessa had first searching for this since she and her husband Colin put together in August 1989 grew from the had been informed in 1984 by pathology staff at initial 110, to 500 by Sept 1990 and to the Royal Perth Hospital that there was something present 1,675 individual records, which provide very rare happening to polio survivors in USA. valuable ongoing statistics on WA polio survivors. The first quarterly newsletter was sent Armed with this and more information that had out by Tessa in Nov 1989 and a book of 39 polio been sent to ParaQuad in Perth from Beth Brodribb stories produced by March 1990. An "Odd-Shoe at (then) ParaQuad Victoria and information Bank" was an early initiative set up at the Polio brought to Perth by Jack Phillips from the NZ Polio Office, where people donate the "unwanted- Support Group, Tessa had gathered a small group others" when buying 2 pairs to make a pair. of known polio survivors to organise this big Tessa, Brenda and Dr Peter Nolan were invited meeting for which an interview by Channel 7 in speakers at the first National Polio Conference in Perth went national. Unfortunately, Colin Jupp died Vic in 1991 and in SA in 1992. Tessa has spoken of respiratory failure due to post-polio in the midst at other Polio Conferences since then, including of these preparations, leaving Tessa to cope with the Miami International Polio Conference in 2007 the tremendous response the TV news item where she presented papers on the ongoing created. ParaQuad, where Colin had worked in his carnitine research undertaken by the WA Polio wheelchair at the sheltered workshop, allowed Clinic since 1994. Serum carnitine levels are Tessa to use a small office there and so the facilitated by the Children's Hospital as part of Network developed from the initial 230 polio clinical management by Dr Niblett. people who turned up from all over WA for that first meeting. In 2000, Poliowa was successful in getting the WA Health Dept to provide a Late Effects of Amongst the first to volunteer for the initial Disability Clinic (primarily for polios) at the Royal committee at that meeting, were Dr John Niblett Perth Rehab Hospital, a welcome addition to the and physiotherapist, Brenda Lake, both polio State Orthotic Clinic and Wheelchair Clinic survivors. Finding that there were medical and available to WA polios at that hospital, which allied health workers in the WA polio population, it had been the Infectious Diseases Hospital in the was the next logical step that a polio clinic be set days of acute polio. This physio-driven clinic up to deal with the health problems prevalent in which operates 3 days a week, is run by Deb the now 500-plus who had joined the Network and and Andrea and headed by Rehab specialist Dr were clamouring for help. So with the assistance of Dade Fletcher. Dr Hillman's clinics at SCGH Dr David Hillman from the Sleep Disorder Clinic continue to provide expertise for polios with and his registrar Dr Peter Nolan, at Sir Charles respiratory and sleep disorder problems. The Gairdner Hospital (SCGH) where Dr Niblett also Poliowa Clinic is now run as a day-clinic by Tessa worked, a free "group-polio clinic" staffed by Jupp RN. Dr John Niblett continues as Hon volunteer health workers, including registered Medical Officer for the Clinic and President for nurse Tessa Jupp, physio Brenda Lake and some of the Network but is currently working from a her colleagues, an Occupational Therapist, a wheelchair as the only radiation oncologist for respiratory technician, two orthotists from the PNG at Angan Hospital in Lae. He maintains State Orthotic Dept, and some students from the contact with Poliowa by phone and email. School of Podiatry, was up and running early in January 1990. Page 13
Polio Oz News
Post Polio Network of WA ( C o n t ’ d )
Poliowa has an elected Management Committee of CEO, clinic sister, and membership is free for all WA polio counsellor, educator, survivors. Fundraising has always been an researcher, fundraiser important part of maintaining the Network and newsletter, health which became separately incorporated in 1992 booklets and stories although links are still maintained with book editor. Tessa is ParaQuad. Lotterywest has provided funding for ably assisted by a office equipment but not ongoing funding to run number of volunteer the Network. A large part of income is by members who assist in general donations from members and donations running the Polio Office. for service provision. Poliowa moved to larger Tessa provides premises in 1995 at Perry Lakes Stadium and individual, group and to a shopfront at Floreat in 2007. Early on it phone consults to became apparent that WA polios did not want members which can take support groups so these were not formed. up to 4 hours. Part of the service provision has The Network provides information, advice and been procuring cheap, clinical support to maintain the independence of good quality and its members. There are regional groups in the effective nutritional major country centres that usually only meet supplements to help when Tessa visits to give talks and conduct alleviate health concerns clinics. Members attend annual meetings with a of polio members who guest speaker and the Christmas Party. Polio call in to pick them up or Reunions were held in 1991 and 2005. A have them mailed out. Lotterywest Grant provided the finance to The clinic continues to PPN of WA produce a 500-page book on the history of provide polio research representatives on polio in WA which will soon be launched - see P and as well as carnitine, Polio Australia’s 9. This will be closely followed by another book is presently trialling a Committee of of more than 200 polio stories that have been stem-cell enhancer Management Tessa Jupp (top) submitted over the past 10 years. which appears to be and Jenny Jones Tessa is the only employee of the Network and benefitting members. works more than full-time. She fulfils the role WA is a large state and outreach to cover distance includes web page, emails and phone.
2014 Post Polio Conferences
Post-Polio Health International (PHI) will be holding its 11th International Conference from Saturday 31 May to Tuesday 3 June in St. Louis, Missouri, USA, in 2014. The theme of this conference will be “Promoting Healthy Ideas” which will explore how people with disabilities can be healthy or, at the very least, strive to be healthy.
The program committee is developing sessions based on: wellness practices, recreating ourselves, minding our relationships, life decisions of ageing, conditions of ageing, and more. Keep checking the PHI website for emerging details.
POST POLIO SYNDROME: A Condition Without Boundaries
Following the successful conference in Copenhagen in 2011, the 2nd European Polio Conference will be held in Amsterdam from 25-27 June 2014.
The Conference aims to promote better care for the large number of 700,000 Europeans suffering from late effects of polio by exchanging knowledge between health care professionals, researchers, polio survivors and patient organisation representatives from Europe and world wide.
Keep checking the conference website for details: http://polioconference.com/ Page 14
Volume 3, Issue 3
The Things I’ve Done by Michael O'Shannassy disabled games. I started competing in 1988 at the age of 35. At the National Wheelchair I was one of the last to get polio in Melbourne, Games, I won 1 gold, 4 silver medals, and a Australia. My mother said I caught it about 2 bronze medal for the Australian Capital months before the vaccine came out. I was in Territory team in wheelchair basketball. the Fairfield Infectious Diseases Hospital for a while, then moved to Hampton Rehabilitation I moved back to Victoria in 1989, having spent Hospital for a year. 9 years working at the ATO’s Head Office, and went on to compete in my first international I believe I was close to being in an iron lung competition in Kobe, Japan, where I won a gold but, fortunately, I just had polio in both arms medal in a relay team. and legs and had callipers for a few years! My mother always said I would reach 10, then 20, Next games were in Beijing, China, where I 30, 40 and 50; now, in few months, God won bronze in the 400m freestyle. I then willing, I'll be 60. travelled to Argentina and England, and attended 3 Paralympics - 2 as a spectator and 1 I’ve had to use the expression “a fortunate life” as volunteer in Sydney. because, thanks to the help of parents, 4 brothers and 4 sisters, I’ve done a lot of things. By 1988 I was playing golf every day, and doing some kind of running-hopping training so At first, mother had to keep my arms and legs I could participate in a 10 km run (with a lot of straight and change bandages every few hours walking . . .) around the old Parliament House. as I lay in a Thomas splint. I was 18 months I ended up winning a trip to Singapore for my old so I don’t remember much. efforts in raising money for kids in Africa - and Then a physiotherapist told my parents to get here I am, 25 years later! me moving, so my father had an inground pool I started to fall over a lot around 1988 and had build in late 1950s - unheard of then! I think it to resort to using a half calliper. It was a lot was first pool the Grollo Brothers built, all in lighter than the old iron ones, and made of concrete. I used to swim every day, even in plastic. Then, as post-polio hit me, I went on to winter in Melbourne. It was cold but it helped. use a crutch, as falling over (when not drunk) By age of 7, I could throw away my callipers started to hurt. and I just wore built up shoes. I developed asthma in 1992, although losing I started school at the age of 6 and graduated weight and swimming helps nowadays. I moved in 1970 from Monash University, where I did from Melbourne to the Gold Coast in 2003, got Economics and Law. I then worked for married, and love it there when I'm not Australian Taxation Office (ATO) for 30 years, overseas. finishing up as Tax Counsel.
In the last 6 years, I've been in Tonga helping them with a new tax system, and now I’m in Zimbabwe doing the same.
I’ve always loved sport, especially football (Aussie Rules) and was Secretary and Team Manager of many teams in the 1970s and 1980s.
In 1984 I took up swimming again to help lose weight, and in 1988 I met a guy, who had also had polio, who said I could compete in 2011 World Swimming Championships in Shanghai Michael (far left), Team Manager of Tongan Swimming Team Page 15
Polio Oz News
Man Living in Hospital for 45 Years by Reissa Su
Source: IB Times - 5 August 2013
Imagine living in a hospital for 45 years as a patient. This is the story of Paulo Henrique Machado who has spent almost all his life in a hospital. He had infantile paralysis when he was a baby due to polio. He has been living in a hospital in Brazil, Sao Paulo's Clinicas, for 45 years because he needs to be hooked up to an artificial respirator every day for 24 hours.
Despite his medical condition, Mr Machado has learned to become a computer animator and is their lives to polio. He said each death was currently involved in making a television series dismembering. He now has only one childhood about his life. Brazilian-born Paulo Machado's first friend left - Eliana. memories were moving around the hospital in a Doctors were puzzled how the two polio patients wheelchair. have outlived fellow patients for so long. Mr Mr Machado has explored all the corridors of the Machado wakes up in the ward with his bed hospital he has lived in for 45 years. He facing Eliana. Some people thought that he and remembered going to the other rooms of children Eliana were more like husband and wife, but Mr who were also confined during that time. This Machado believes they were more like brother was how he discovered his universe with doctors and sister. and nurses as parents. He believes Eliana gives him strength and vice- Mr Machado's mother had died when he was only versa. They both trust in each other and he two days old. He contracted polio as an infant, a considers his relationship with Eliana crucial. result of one of the last polio outbreaks in Brazil. The risk of infection is always there. This is the Ligia Marcia Fizeto is Mr Machado's nursing reason why Mr Machado and Eliana had to stay in assistant. She began working at the hospital just the hospital. As he got older and medical days after he was born. Ms Fizeto recalled it was equipment became less bulky, Mr Machado has sad to see the children lying on their beds, gone out at least 50 times in recent years. almost not moving at all. Eliana Zagui spends her time writing in the ward. Children who were diagnosed with polio in the She is a published author and uses her mouth to 1970s had slim chances of reaching adolescence paint. Since Mr Machado and Ms Zagui have lived based on doctors' grim assessments. Children in the hospital for so long, the hospital allowed with polio were locked in a "torpedo" or a body- them to decorate their rooms. Mr Machado has encasing iron lung. Few children in the hospital's two powerful computers which he uses to train as polio ward were expected to have a life an animator. expectancy of just 10 years. Mr Machado has successfully raised funds of Despite Mr Machado's limited movements, he $65,000 to produce a 3D animated film series made friends with other children in the ward. His known as the Adventures of Leca and her Friends friends - Eliana, Anderson, Pedrinho, Luciana, based on a book written by Ms Zagui.
Tania and Claudia, were with him for more than Both are excited about their project and can't 10 years. He cherished their friendship. As a wait to see the whole animated series. Long-time child, he could not imagine that he would lose his nursing assistant, Ligia Fizeto can't help but feel friends to polio. proud of their achievements.
By 1992, some of his friends had deteriorating To contact the editor, e - m a i l : health. He watched his friends die one by one [email protected] until they were nothing but a memory. It was difficult for Mr Machado to see his friends lose Page 16
Polio Oz News
Polio Shrinks Woman’s Brain Tumor by Sydney Lupkin (@slupkin)
Source: ABC News - 18 July 2013
Stephanie Lipscomb, 22, used to have a "I was pitiful," she said. "By that point, my cancerous tumor the size of a lime in her brain. migraines were so bad, I couldn't eat anything Monday, she learned that it's the size of a pea, without throwing it back up. I couldn't bathe and it's still shrinking even though she hasn't had myself. I couldn't dress myself." any chemotherapy or radiation in more than a year. So she called her grandparents, who were nearby. They took her to the emergency room, Doctors at Duke University Medical Center fearing meningitis. attribute the shrinkage to the modified polio virus they injected into her tumor in May 2012, When Lipscomb's CT brain scans came back, they causing it to shrink without damaging found a tumor the size of a tennis ball behind her surrounding healthy brain cells. right eye. It was a glioblastoma – the most aggressive kind of brain cancer. She was only 20 "Throughout this whole process, I never thought years old and told she would live five more years I was going to die," she said, adding that she's a at best. religious person. "This is just another part of my story." The typical glioblastoma patient has between 14 and 18 months to live from the time he or she is Lipscomb was finishing up her freshman year at diagnosed, said Dr Annick Desjardins, Lipscomb's the University of South Carolina Upstate in 2010 neuro-oncologist at the Preston Robert Tisch when headaches began to plague her as she Brain Tumor Center at Duke University Medical juggled nursing classes and waitressing. At first, Center. Even after surgery, these types of tumors doctors told her she had chronic migraines and usually return, signalling that the patient will die gave her caffeine pills. Later, they said she had a in three to eight months. sinus infection and gave her antibiotics. So when Lipscomb's tumor returned two years Nothing worked. after her initial surgery to remove it, Desjardins gave her the option of enrolling in a clinical trial Page 17
Polio Oz News
Polio Shrinks Woman’s Brain Tumor ( C o n t ’ d ) that would use the polio virus's scariest feature: its ability to unlock a cell, enter it and kill it.
Not all brain cancer patients were eligible, Desjardins said. Lipscomb's tumor was in the right frontal lobe, the area of the brain the controls planning and social skills. Had it been in the area that controls motor skills, vision or language, doctors wouldn't have offered the treatment because it would have been too dangerous to tamper with those areas of the brain.
Lipscomb's mom was on the fence about using the virus.
"She was like, 'What? They're gonna put polio in my daughter? What the heck are they thinking?'" Lipscomb said. "I had to break it down a little more for my mom since I'm a nursing major."
Using polio to treat cancer has been Duke neurosurgeon Dr Mattias Gromeier's goal for two decades, during which he created and studied a It took several months for the virus to start modified version of the virus under a microscope killing Lipscomb's cancer cells, but on Monday, and in monkeys. she learned that the tumor was only the size of a pea. Desjardins told her it could come back, but Lipscomb became Gromeier's first human the tumor was still shrinking. patient, and so far, she has survived longer than she would have with standard treatment, "It was probably one of the most exciting scans I Desjardins said. have ever seen of my brain," Lipscomb said. "I don't think it's going to come back." "It has been most gratifying," Gromeier said. Of the eight patients treated with the modified The standard polio virus uses a receptor polio virus, two have not responded well. Three molecule present on brain cells to "unlock" patients have been improving over the last few them. The virus then enters the cell and months and it is too soon to tell how well three replicates until the cell dies. Gromeier's modified other patients will respond, Gromeier said. He version of polio is spliced with a rhinovirus, does not know why the tumors didn't shrink in which causes the common cold. This allows it to two of the patients. enter healthy brain cells using the same receptor molecule – which is also found in most cancers – Another clinical trial is in the works so Gromeier but the virus is unable to replicate, so it can't can continue his research. hurt the cells. Since even non-glioblastoma cancer cells have However, because cancer cells have a different the receptor polio needs to unlock it, Gromeier biochemical makeup than regular brain cells, the has been able to shrink melanoma, prostate, modified virus is able to enter them, replicate colorectal and pancreas cancers in a lab. Still, he and kill them much like normal polio does. As has yet to do trials on animals or humans. such, the virus leaves healthy brain tissue unharmed, but it targets and destroys cancer.
Once Lipscomb and her mom were on board, doctors used a catheter to enter Lipscomb's brain and slowly inject the virus over six and a half hours.
Page 18
Polio Oz News
Polio Provocation
The health debate that refused to go away and health complications. Provided by University of Cambridge After over 50 years of debate, medical Source: Medicalxpress – 4 September 2013 researchers have shown that polio provocation can occur in certain circumstances. Although the For much of the 20th century, health current danger of contracting the disease professionals were locked in debate about one through this route is likely to be slight, health possible cause of paralytic polio. Some argued professionals need to consider safeguards to that the viral infection could be provoked by reduce the risks even further. "Worldwide uptake medical interventions; others hotly contested of the polio vaccine is important since only this theory. Historian Dr Stephen Mawdsley looks through building herd immunity can the disease at the unfolding story of polio provocation. be eradicated. Research indicates that people who are not immunised against the disease and In 1980, public health researchers working in are living in polio endemic regions may face the West Africa detected a startling trend among risk of polio provocation," said Dr Mawdsley. children diagnosed with paralytic polio. Some of the children had become paralyzed in a limb that "Awareness of this risk informs health policy had recently been the site of an inoculation today. Increasingly, health professionals are against a common paediatric illness, such as considering the importance of immunisation diphtheria and whooping cough. Studies sequence (the order in which injections against emerging from India seemed to corroborate a childhood diseases are given), the type of similar association between diagnosis of polio vaccine to use, and the age at which children and recent immunisation. should be immunised. We will never know precisely how many people were exposed to These reports reignited a debate known as the polio provocation in the past, or how many theory of polio provocation that has waxed and contracted polio by this route, as there is no waned since the early 1900s – and, at times, reference point from which we might measure a shaped immunisation policy. The theory of polio correlation." provocation argued that paralytic polio can be provoked by medical interventions, such as Dr Mawdsley's research, based on records from injections or tonsillectomy. The controversy that the March of Dimes Archives in New York and surrounded the debate forced medical historical medical journals, shows how professionals into the uncomfortable position of successive generations of public health officials considering whether programmes and practices and policy makers made decisions with far- intended to prevent some illnesses might be also reaching consequences for the population. These causing another. professionals were obliged to debate whether polio provocation existed, and decide how best to In a blog published today by Oxford Journals, balance the risks to individuals against the Cambridge University historian Dr Stephen benefits of herd immunity, at a time when the Mawdsley looks at the ways in which the theory mechanism behind the theory had yet to be of polio provocation was debated in the US and understood. beyond throughout the 20th century. His blog draws on his historical research, published in the Polio, which was first identified in the 19th Social History of Medicine, into the polio century, was (and still is) a feared disease: provocation debate. haunting images of polio survivors with withered limbs or children housed in respirators (iron Polio is a terrifying disease. Most infections of lungs) serve as potent reminders of the suffering polio pass unnoticed but, in a small percentage caused and underline the importance of polio of cases, the virus can enter the blood stream, vaccination. In the US, outbreaks often peaked where it targets the motor neurons of the spinal in the summer and children were particularly cord. Depending on the severity of the infection, vulnerable. One Minnesota physician the disease can cause paralysis of the limbs and remembered the 1948 epidemic: "The people of respiratory muscles, which can lead to further Minneapolis were so frightened that there was complications or death. For those who survive nobody in the restaurants. There was practically the acute phase, the rehabilitation process is no traffic, the stores were empty. It just was lengthy and some are left with lasting paralysis considered a feat of bravado almost to go out Page 19
Polio Oz News
Polio Provocation ( C o n t ’ d ) and mingle in the public." continued to assure clinicians that the danger was minimal. The first vaccine against polio, developed by Dr Jonas Salk at the University of Pittsburgh, was Anxiety about the hypothesis peaked in 1950 field tested in 1954 and subsequently licensed when a rise in tonsillectomy operations coincided for use in mass immunisation programmes by with a spike in the diagnosis of polio. Once again, April 1955. Polio incidence in the US and other although clinical evidence suggested that developed countries plummeted from that time tonsillectomies appeared to treble the risk of and polio was slowly eradicated from the list of children contacting polio, not all doctors agreed – life-threatening children's illnesses. though many heeded the advice to postpone Immunisation offered protection and the debate procedures until the summer polio season was about polio provocation slipped from public over. In the absence of a consensus, doctors consciousness. made decisions on a case-by-case basis.
While parents in developed countries no longer Shifts in notions about the causes of polio fear polio, the disease remains a threat in some outbreaks – which was first considered to be an developing countries – such as Afghanistan, infection spread by immigrants or poor hygiene, Pakistan and parts of Africa. Growing concerns and later as an affliction targeting prosperous, raised by major aid organisations prompted a active people – were accompanied by changing team at the State University of New York to theories about the possible causes of polio unravel the mechanism behind polio provocation. provocation. In 1998 scientists Drs Matthias Gromeier and Eckard Wimmer were able to show Along with tonsillectomy, implicated at different that tissue injury caused by certain injections times were injections of a wide range of drugs gives the polio virus easy access to nerve and paediatric immunisations. By 1952, leading channels, thereby increasing its ability to cause medical and health organisations in the US paralysis. agreed that injections against common infectious diseases such as diphtheria, whooping cough and "In the light of this discovery it is fascinating to tetanus should be postponed during periods of look at how polio provocation, which some high polio incidence, while other injections such experts contested simply did not exist, migrated as vitamins and hormones were thought to be from being a theory to a clinical model – and safe. trace its history and the waves of debate about it, both in the US and beyond," said Dr "The decision to reform public health policy in the Mawdsley. "At various junctures during the 20th US was handled differently in various areas, but century, health professionals were divided in appears to have been taken with great care, opinion, which meant that it was difficult to since it was clear that withholding certain establish a coherent public health policy. Medical immunisations would jeopardise herd immunity," scientists were also frustrated by the difficulties said Dr Mawdsley. "Delaying injections until after this debate posed to anyone conducting field polio epidemics subsided was an expedient trials using injections." means to achieve a compromise."
One of the first procedures to be implicated as provoking polio was tonsil surgery. In 1910, doctors observed that children who underwent throat surgery during a polio epidemic faced an elevated risk of contracting polio within seven to 14 days of the operation. Supporters of the polio provocation theory warned fellow clinicians that operations to the nose and throat should not be performed during epidemics when the risk of contagion was highest. Medical opinion, however, remained split: while the US Army and some leading public health officials advised against tonsil and adenoid operations during polio outbreaks, other health professionals Page 20
Polio Oz News
New Threat to Polio Eradication
The disease's last outposts are proving the place, with babies drooling all over each resilient other. So you could see a scenario where polio by Helen Branswell would come back from a developed country.”
Source: Salon - Monday 12 August 2013 It could happen in the developing world as well. Although it was once thought that This article was originally published by Scientific immunocompromised individuals could not American survive for long in lower-income countries,
circumstances are changing as those countries Global eradication of polio has been the ultimate improve their health care systems. In 2009 an game of Whack-a-Mole for the past decade; immunodeficient 11-year-old Indian boy was when it seems the virus has been beaten into paralyzed by polio, five years after swallowing a submission in a final refuge, up it pops in a new dose of oral vaccine. It was only then that region. Now, as vanquishing polio worldwide researchers recognized him as a chronic excreter. appears again within reach, another insidious threat may be in store from infection sources Chronic excreters are generally only discovered hidden in plain view. when they develop polio after years of surreptitiously spreading the virus. Thankfully, Polio’s latest redoubts are ‘chronic excreters’, such cases are rare. According to Roland W. people with compromised immune systems who, Sutter, the World Health Organization scientist having swallowed weakened polioviruses in an who heads research policy for the Global Polio oral vaccine as children, generate and shed live Eradication Initiative, the initiative is pushing for viruses from their intestines and upper the development of drugs that could turn off respiratory tracts for years. Healthy children vaccine virus shedding. A few promising options react to the vaccine by developing antibodies are in the pipeline. that shut down viral replication, thus gaining immunity to infection. But chronic excreters Drugs can only solve the problem if chronic cannot quite complete that process and instead excreters are identified, and that’s no easy task. churn out a steady supply of viruses. The oral For years scientists in Finland, Estonia and Israel vaccine’s weakened viruses can mutate and monitored city sewers, watching for signs of regain wild polio’s hallmark ability to paralyze shedders’ presence. In many samples, they have the people it infects. After coming into wider found the telltale viruses from chronic excreters, awareness in the mid-1990s, the condition but they have failed to locate any of the shocked researchers. individuals. These stealthy shedders may not be classic immunodeficient patients traceable Philip Minor, deputy director of the U.K.’s through visits to immunologists. Instead they National Institute for Biological Standards and may be people who do not know they have an Control, describes the biomedical nightmare: immunity problem at all and are under no Wild polioviruses stop circulating. Countries cut specialized medical care. “We know that there’s back on vaccination efforts. A chronic excreter really a Damocles sword hanging over them,” kisses an unvaccinated baby, and the baby goes Sutter says. It hangs over the rest of us as well. to day care. “And zappo,” he adds, “it’s all over Page 21
Polio Oz News
To Keep Polio at Bay
Israel Revaccinates A Million Kids by Jason Beaubien
Source: NPR – 2 September 2013
In early August, Israel launched a mass campaign to vaccinate children against polio, including this little girl at a clinic in Rahat.
Israel is in the midst of a massive, emergency immunization drive of all children under the age of 9 against polio.
Why?
Health workers detected the virus in southern Israel in February. Since then, they've found it in 85 different sewage samples across the country, Genetic testing of the polio samples from Israel the Global Polio Eradication Initiative said shows that the virus recently came to the Middle Wednesday. Yet so far, no children have gotten East from Pakistan. Exactly how it got there — by sick or been paralyzed by the virus. boat, plane, truck or bus — is unclear. But what is known is that the virus can travel inside Israel has one of the highest rates of polio someone's intestines without making that person immunization coverage in the world, says Chris sick and then escape into a new environment. Maher of the World Health Organization. And that's one reason why the country has avoided There's concern that the virus circulating in Israel polio cases, so far. But health officials are still may spill out of the country, says Emory very concerned about the situation. University's Dr. Walt Orenstein, who has worked extensively on polio. "There's enough virus The vaccination campaign aims to give polio circulating [in Israel] that it could get out of that boosters to a million children. area in to other countries," Orenstein says.
"There's no way that 100 percent of the To ensure the entire community is protected population can be immune at any given time," against polio, Israel has started using the oral Maher says. "So any time that virus is circulating vaccine, instead of the injectable one. The oral [in the environment], if there's a person who's vaccine contains a weakened, live form of the not immune, there's a risk that that person is poliovirus, which can spread through the going to get clinical polio. They're going to get environment and help immunize kids that don't infected, and they're going to get sick." get vaccinated.
Israel's last polio case was reported in 1988, and Getting rid of polio flare-ups, like the one in the WHO declared the country polio-free in 1992. Israel right now, is a crucial part of eradicating The fact that the virus is being found across a polio globally, Orenstein says. Although wide geographic area in Israel shows that it has eradication efforts are focused on the remaining re-established a foothold in the country, Maher reservoirs in Nigeria, Afghanistan and Pakistan, says, and that it's reproducing in the community. he says, the rest of world can't let its guard down
"The situation in Israel is a significant one against the disease. because it represents an area of circulation in a "We've got polio down. The issue now is to knock world that really doesn't have very much polio it out," he says. "That will give us global security anymore," he says. that never again will this [disease] cripple our
Last year there were only 223 recorded polio children or our adults." cases on the planet. And they were in remote areas around Nigeria, Afghanistan and Pakistan. This year there have been 214 cases reported, so far, with 128 of them occurring in Somalia — a country that had been polio-free since 2008. Page 22
Polio Oz News
Polio This Week
Source: Polio Global Eradication Initiative - as of Wednesday 4 September 2013
Wild Poliovirus (WPV) Cases
Total cases Year-to-date 2013 Year-to-date 2012 Total in 2012
Globally 250 134 223
- in endemic countries 76 129 217
- in non-endemic countries 174 5 6
Case Breakdown by Country
Year-to-date 2013 Year-to-date 2012 Date of Total in Countries most WPV W1W WPV WPV W1W 2012 WPV Total Total recent case 3 3 1 3 3 Pakistan 27 27 26 2 1 29 58 11-Aug-13 Afghanistan 4 4 17 17 37 23-Jul-13 Nigeria 45 45 67 16 83 122 14-Aug-13 Chad 5 5 5 14-Jun-12 Ethiopia 1 1 0 10-Jul-13 Kenya 13 13 0 14-Jul-13
Somalia 160 160 0 07-Aug-13 Niger 1 15-Nov-12 Total 250 0 0 250 115 18 1 134 223 Total in endemic 76 0 0 76 110 18 1 129 217 countries Total out- 174 0 0 174 5 0 0 5 6 break
Data in WHO as of 04 September 2012 for 2012 data and 03 September 2013 for 2013 data.
Somalia and Kenya Polio Outbreaks
The Global Polio Eradication Initiative has conducted a three month assessment of the responses to the Somalia and Kenya polio outbreaks, which concluded that the response was rapid and aggressive, with strong national leadership and international coordination.
In both countries, there is a significant risk that the outbreak will extend beyond six months. However, there are indications that the response activities to date are having an impact: fewer cases are being reported in the area considered the ‘engine’ of the outbreak – the Banadir region of Somalia, which includes Mogadishu. Concrete recommendations were made to ensure that the outbreak is stopped rapidly.