“Life Stage Matters”
This has been the biggest thing Polio Australia has done in its 10year history. There have been delegations, retreats held around the country, clinical studies published, clinical practice workshops. But inviting more than 20 health professionals from USA and Europe (at their own expense) to come to Australia for an Australasia-Pacific Conference in a five star hotel, was huge.
For the record, the conference was partnered by Interpoint Events Conference Planners and included 230 delegates, made up from 150 polio survivors and 80 health professionals, many of whom had polio “lived experts”. Apart from 160 from Australia, people came from Canada, Denmark, India, Italy, Japan, Netherlands, New Zealand, Spain, Sri Lanka, Taiwan, United Kingdom, and the USA.
The goal was to “provide an international forum with a concentrated, gold-standard exchange of knowledge and experience from a wide range of health professionals and ‘lived experts’ about the diagnosis and treatment of the post-polio condition in different age groups to best preserve functioning throughout life”.
So how to bring it to life? These notes are from the sessions I attended, highlights rather than full reports. Experience was everything as Jenny Jones from WA emailed on reaching home:
“I thought I had kept up and was feeling good. Until half way home to Perth and my throat started to ache. I was also feeling the fatigue kicking in. By Tuesday I had bronchitis, asthma and fever and placed on antibiotics. Was the conference worth the illness and at least a week to recover? Yes, yes and yes being immersed with doctors, nurses, Physios, OTs, nutritionist, psychologist, researchers and PPS was gold for me. So many people in one space understanding how I cope with life with PPS”.
Admit, I didn’t intend to go, even though it was the biggest event ever for Australian polios. The cost was going to be high and unaffordable, wasn’t sure of my stamina. But a Facebook friend offered to sponsor me and with additional help from the MPPPSG and two Qld friends, who could say no?
The trip into Sydney itself was a gem. Painful experience has taught me to tick the boxes ‘needs assistance’ so I was chaired to and from the aircraft, also out to the Airbus to the hotel. The bus heaves into view, there’s a rush towards the driver of angry people who had been waiting for up to two hours. While the men argued two ladies and I hop into a back row. We start chatting. The Brisbane lady next to me says her grandfather had polio and was fascinated to hear about late effects. From across the aisle came a call “Fran?” “Yen!” this was my roommate from Adelaide. We had yet to meet. She was going to arrive earlier than me and explore. Airbus put an end to that and we were able to arrive together – not before an hour and a half’s exploration of Sydney CBD while the driver, an Iranian from Copenhagen called Safari, used his GPS voice to find each passenger’s destination. Safari indeed.
Yen Tran, a pharmacist, originally a boat refugee from the Vietnam war, and I get on well. We are given a delightful hotel room overlooking the Opera House, she is in seventh heaven. We plot to avoid expensive hotel breakfasts. She has tins of tuna, I have a box of museli and yoghurt. I do my best to avoid her generous offers of tuna.
We gather at 8.30am for coffee and registration.
MC Gary Newton (polio Geelong) opens by reminding us that one in three people suffer from public speaking anxiety. “Glance nervously at those either side of you”, he jokes. A broadcaster by trade, he does a wonderful job.
Conference chair Dr Steve de Graaff welcomes delegates. He reminds that the challenge for us was to get the medical fraternity to understand the needs of polio survivors. “Conferences such as this offer the chance to expand the view, that knowledge. If we can educate one doctor, one nurse, that's a start”.
Polio Australia President Dr John Tierney thanked PA’s Mary-Ann Leithof for the concept, scale and depth of the conference. He described how we had learned from Warm Springs (polio conference in 2009) how to run retreats and conferences.
Dr Tierney told how at Warm Springs he was billeted in a log cabin. The name on the door suggested he was sharing with one Ivy Jones! Very far thinking these Americans, he thought, but Ivy turned out to be a Latin scholar who had turned to marathon running for fitness. John suggested hydrotherapy to better manage his condition.
“Medical school doesn't teach about polio, we are not helped by doctors who make wrong diagnoses and go down the wrong track”. His first diagnosis was of chronic fatigue syndrome, he explained.
So there were two sides of the conference, spreading information freely through Australia and helping us to help ourselves, which we did. The buzz over lunches, teas and dinners was energetic.
The opening plenary was salutary with polio survivor Dr Mary Eulberg of Denver, USA, talking about ‘what polio causes, does not cause and what might cause’.
As a polio survivor she became aware that polio survivors had little or no knowledge about the disease process, while health professionals were similarly confused. It was easy to blame everything on polio or nothing.
She pointed out that fortunately the virus affected the front but not the back part of the spinal cord leaving us the opportunity to make alternative decisions on movement.
Initially Dr Eulberg said, there was loss of nerves to any voluntary muscle, plus cold leg or arm, osteoporosis, swelling of leg or foot. Secondary effect is increased wear and tear of joints, tendons, ligaments such as shoulders not normally used for ambulation.
“Fatigue comes particularly if you are walking with crutches, takes twice as much energy as walking without”, Dr Marny Eulberg.
She mentioned psychological affects from prolonged hospital stays, being teased at school. When asking her patients if they had counselling, 90 per cent said no.
Headaches also were common from using the head for transfers, in bed to sit up etc. (This made sense – how often do we do that to augment the arms and shoulders?)
Not related to polio were: allergies, dizziness, sharp shooting pain or numbness, emphysema was more likely caused by four packets a day of cigarettes. Cancer, liver and kidney diseases. Her full speech can be found on Polio Health International website.
Session one, keynote speaker on pain management was Dr Steve de Graaff, Victoria’s polio specialist, based at Epworth Hospital. He offered a realistic assessment of the whole rather than providing a list of medications – did mentioned Panadol osteo at the end however.
Second highest feature of PPS is pain, he said. Impacting on life in sleep, appetite, coping control; spiritual well being was important too.
Steve spoke about enormous ramifications of pain that can change people out of recognition with its sensory and emotional experience. People can lose friends and family. He said acute and chronic pain can occur together. There is no cure for that but has to be managed.
Overuse is one major cause of pain. Underuse also, as people mature, things don't work out as well as the used to, even more underuse.
“Occupational therapists are most valuable,” he said. “Some may call them occupational terrorists in the changes they suggest. Avoid the concept of no pain no gain”, he warned.
“When we were told ‘its all in your heads’ well, some of it is, as nerve response goes to brain. It is important to address fears, encourage resumption of normal activities. Need to see a psychologist: you are not going out of your mind but airing challenges to cope on a good or bad day”.
Dr de Graaff emphasized the important role of orthotics, letting people do things they enjoy, even from a wheelchair.
“If you have a fall at 65 there’s a good chance you won’t make 66”, he warned.
Decrease fatigue by improving gait, speed and symmetry. Treat the people suffering, not just the pain. He said sometimes he meets a patient and realizes that person is a two-year project: “I am not God. You need to set up strategies to help yourselves”.
Psychological therapies were also important given what we’ve been through, he added. Most of you will have long-term pain, take it seriously.
Darren Pereira was next up on orthotic needs for younger polio survivors.
He was talking about the modern orthotics – not our old calipers, ferule through the heel and leather strap across the knee. He explained that young polios demand more from braces. The ability to walk is not enough, they want to dance, go to the beach and even wear high heels. Older Australians are beginning to want that too. Advanced orthotic design is providing greater opportunities.
Asked about the difference between orthotists providing shoes and braces, he said he had colleagues who could fit haloes. We laughed then I had an image of a chap in a cafe at Mt Eliza wearing one of those from a neck or brain injury.
Steve de Graaff, who adjudicated this session, asked one questioner who was prevaricating about the inconvenient of orthotics and work:
“Who is the most important person in your life? You! Take time to look after yourself”.
(Make mental note to remind Yen of that quote. As a Pharmacist she is on her feet all day, no orthotic).
Asked about osteoporosis, Steve de Graaff advised 20 minutes in the sun each day. “See this as thinking and planning time if you must – as well as doing something healthy for yourself”.
Merete Bertleson physiotherapist, Denmark spoke about physiotherapy for Post Polio patients as part of an interdisciplinary rehabilitation program. (Denmark has a Rolls Royce version of our Polio Services Victoria).
She talked in detail about the team assessment process, records taken of the patient's polio story, including a diary of activities to see where pain comes from.
An interesting side issue: voiding can be a big issue for polio patients, affected by all kinds of psychological problems. A survey showed polio patients had more voiding issues than the greater population. This should be referred to a specialist.
Dr Kay Lise, also of Denmark explained further about continence issues, saying that bladder issues often were caused by treatment during the acute phase in hospital when the potty was only offered a couple of times a day, resulting in children having to hold on, leading to retention in later life.
Immigrants to Denmark with polio had more challenges than older patients with a stable life: leg length, dislocations, psychological, problems, handling of children, language and cultural difficulties, she said.
Polio Health International’s CEO Joan Headley was to talk about a survey of health professionals with experience in post polio care, but her power point preso was missing. Gary Newton interviewed her instead. She talked about having polio at 15 months old, went on to teach high school biology. When the opportunity came to work with PHI, she knew it was the place to be.
Of the survey she recalled that 84 per cent had training on the job for polio, as well as reading for personal interest.
As was to emerge over the next three days, the emotional impact of polio and PPS was critical. Many of the responses showed polio affects a person’s identity, there is fear of the future and wise decisions need to be made about the future.
Some useful points:
A sense of humour was vital.
You can’t go back to when you were young.
It is not business as usual when treating polio.
Listen to your patients. Ask about trauma, there is a reluctance of many patients to go back into the past, yet some physicians feel they should.”
Align expectations with capabilities.
Buzz word of the conference was Marmaduke Loke of Dynamic Bracing Solutions. His theme was how new bracing methods help strengthen muscles while reducing fatigue and falls. Must have glazed over during his talk so here are the basics from his website:
“To enable the ultimate goal of efficient walking requires much more than making a brace for a limb. It requires a greater understanding of the Individual in need. Efficient walking must be planned. There are a plethora of issues that must first be recognized before they can be solved.
“The bracing of the future will no longer just be moulded materials around a limb; it will improve the alignment of the limb better than ever before, it will offer more functional possibilities, the movement strategy and the brace will be designed to work together symbiotically for the person as a Solution based program, with efficient outcomes planned. In order to enable a person to reach new potentials, even potentials once thought unobtainable, a studied commitment by all involved is necessary.
“We have all seen amputees walk and run with ease and grace. Why can't a brace user do that? Even people with very low-level paralysis involvement rarely can emulate what many amputees can do functionally. Why is that? The Solution development is more complex. Utilizing new clinical theories in lower-limb orthotics that are evidence based can enable a brace user to stand, walk, and even run more efficiently. New bracing solutions are now making it possible to close the gap between prosthetic's and orthotic's capabilities. These new bracing solutions are based on new or expanded concepts, designs, and advanced materials”.
Polio New Zealand was so taken by Mr Loke that they invited him to train NZ orthotics, so his methods would be “embedded” there. The system involves
chairman Gordon Jackman had taken possession of his dynamic new brace only a few days before and he was still getting used to it.
A special story
Many of us wondered whether Aboriginal Australians were badly affected by polio. Information was scarce, but Gayle Kennedy of NSW answered the question in “Finding me: Being Aboriginal and ill in Australian society in the 1950s and 60s”.
This was her story, as posted earlier on my conference blog. Gayle was content for it to be broadcast wider.
IN outback NSW, Gayle Kennedy was the first in her family of six children. In 1957 she was diagnosed with polio and taken away for treatment. Vaccination programs didn't reach Aboriginal children, so she spent three years in a distant hospital.
At that stage of Australian life, Aboriginal people couldn't travel without "dog tags" or permission to travel from the cattle stations where they lived and worked. Her family was unable to visit.
There were no other black people in the hospital, so Gayle saw herself in the white world she inhabited. She was so young she didn't even know she had a mother and father.
Eventually two black people turned up and took her for an 18-hour train ride. She screamed for the first nine hours, then found the man and the woman were loving and kind, they weren't going to hurt her. She thought they were from Mars, but no, they were from Ivanhoe in the middle of a red dirt desert (as red as Mars) in a community of tents, dogs and kids. For her return her father bought a caravan and painted it beautifully inside with flowers. She began to settle down, but 12 months later she had to go back to the Far West Home at Manly on Sydney's northern beaches for treatment. This happened every year until she was 14. It was no seaside resort, surrounded by high green concrete walls.
The Kennedys had christened her Beryl Gayle. At the Far West Home, Beryl being her first name, she was known as Beryl. At home, where ever her parents happened to be, she was called Gayle. So she was Beryl in the white community and Gayle in the black community - this became her way of dealing with two lives.
"I was as alien to them as they were to me," Gayle told the polio conference yesterday afternoon in a five star hotel in Sydney.
At 17, she left home and didn't go back until she realised she needed to get to know her culture and her family that had an unbroken line back to full blooded tribal people. On return she set up a Land Council and a housing project, returning regularly until intense fatigue made it impossible for her travel.
"It took years to find that post polio syndrome existed", Gayle said, echoing that common experience to her listeners.
"I found it difficult to explain to aboriginal people why I had no energy to travel, even to important funerals. They didn't understand, being so marginalised that disability is a long way down the scale of disadvantage. No-one even wanted to help me, I needed a special car for the wheelchair and help to get in and out of it".
Gayle has come to terms not only with Post Polio Syndrome but the core aspect of her life. It took years to get on a list to receive services and she still doesn't know if there were other Aboriginal people who suffered like her. (After years of wondering, Polio Australia knew of one other who died some time ago however).
Gayle started to write about her journey. In Scotland a nurse from the Far West Home read a story in Readers Digest "scourge of waiting rooms", Gayle quipped. The nurse wondered if it was "her Gayle". On return to Australia she tracked down Gayle who took the old friend to meet her parents (nursing staff often became lifelong friends). The Kennedys were so moved to find that someone else loved their daughter as much as they did.
At this point of the talk, Gayle who had left her reading glasses behind and was speaking off the cuff, could talk no more. She handed up the microphone and reversed her wheelchair to let tears flow. "That always gets me," she commented.
Gayle Kennedy has received a literature grant and is planning to write an account of her polio experience - from her point of view and that of her parents. Two major publishers have expressed interest.
Much has been said at this Life Stage Matters conference about pain, acute and chronic. Much of Gayle's story resonated among those attending and others around the world. But this was one story that has taken many years to emerge and the pain is raw.
That first evening, delegates were treated to a cocktail party on the roof of the Museum of Contemporary Art Australia, a short wheelchair ride from the hotel. The handsome stone building used to be the Customs House. The view from the roof turned out to be Sydney Harbour Bridge and the Sydney Opera House, a real treat for both Australian and overseas visitors.