Reflections from the Australasian-Pacific Post-Polio Conference

On Monday 19 September, I flew into Sydney a little apprehensive about what the next three days would bring. The following morning, I walked into the foyer of the Four Seasons Hotel along with 250 delegates, presenters, carers and friends and was immediately put at ease.

We all received our name tags from the registration desk before moving to the business displays, which included orthotic devices, respiration aids and Mt Wilga Private Hospital. The walls were adorned with posters depicting the progress of polio through the ages, artwork with interpretations of disabilities caused by polio, and charts and graphs from some of the presentations to come.

We were ushered into plenary room for the official welcome and opening at 9 am. Then we went to our selected sessions for an hour before morning tea. Here I will tell you that the food was just great! Every morning tea, afternoon tea and luncheon had a plethora of choices and every break had a different spread. I think I put on two kilograms over the three days.

All presentations received positive feedback and I could give my impressions of the sessions I attended, but all the content from the conference will be available soon on the Polio Australia website: polioaustralia.org.au.

However, I will tell you about some of the presentations that have left a lasting impression on me.

The first of these was by Gayle Kennedy, an indigenous woman who, at three months, was taken to Sydney for treatment in an iron lung. She was not able to see her parents until they came to pick her up three years later, not realising who those dark-skinned people were. In the 50s indigenous people were not free to travel without permission from the authorities. I still think about this story.

Danica Knezvic’s presentation was an audiovisual representation of her grandmother moving back and forth throughout her house and the tempo and rhythm of those footsteps and shuffles. Danica is now the carer for her grandmother.

Dr Antonio Toniolo told us of his research at the University of Insubria Medical Centre, Varese, Italy. His team have found remnant poliovirus traces in DNA strands in some post-polio survivors. This research shows that these remnants are not transmitted to family members or the community.

Dr Kerry Highley’s closing plenary touched me personally and took me back to when I was going through the original infection and isolation, and included the fear, rejection, denial and anger I felt. I guess I was tired and had listened to much information over the conference, as I was very emotional at the end of her talk.

The conference was a highlight of my life with late effects of polio and I thank the organisers and all the presenters. I am also very happy to think that Polio SA assisted six members to attend.

Brett Howard
Polio SA President

Jo Gordon’s story

Jo Gordon has had a love of drawing and painting since she was about six years old. After leaving school, she went to art school to refine her natural talent and gain useful skills and techniques in life drawing.

When Jo’s two children started school at Belair Primary, she secured a position as a school services officer in the library. Soon after she started, the staff realised her artistic ability and before long Jo was responsible for all the displays, backdrops for plays, and decorated blackboards for classrooms.

Jo worked at the school for 32 years and enjoyed her time there very much. During this time, Jo was a member of the Belair Holy Innocents Church and assisted the fellowship with banners and other artistic exploits in the church.

Jo has been part of the Littlehampton community for more than 25 years and feels passionate about the history of the area. In 2009 Jo was commissioned to paint five banners for the 150 year celebration of Littlehampton Bricks.

Now aged 70, and dealing with post-polio syndrome for the past 10 years, Jo still can’t stop painting and giving her time to the community. Although sometimes Jo feels exhausted, she always remains positive and brave and has the courage to go on – just like the Anzacs.

The organisers of the Gunner’s breakfast at the Littlehampton Institute asked Jo to commemorate 100 years of the Anzacs.

The result is this magnificent banner that portrays the story of the Anzacs in Egypt and the landing at Gallipoli. This has been a labour of love that has taken Jo approximately 3 months and some 250+ hours to complete.

At times work has been slow, due to the aches and pains of muscle fatigue from post-polio syndrome and other ailments.
When Jo paints, she loves to listen to loud music to help the artistic flow. She has worked many late nights, and had a few 3 am starts to complete this banner for the community.

During the April school holidays, her grandchildren, Mia (10 years) and Anna (8 years) of Happy Valley, assisted with some of the finishing touches.
Thanks to Jo for sharing her story.

Dr DeMayo shares latest rehabilitation findings from the US

Technical difficulties didn’t stop the show when US-based Dr DeMayo, a specialist in physical medicine and rehabilitation spoke to a full house for Polio SA in Glenunga on Sunday 18th September.

The event preceded his keynote talk at the 2016 Australasia Pacific Post-Polio Conference in Sydney on 20th to 22ndSeptember. After he spoke, Dr DeMayo was joined by Dr Nigel Quadros from the Queen Elizabeth Hospital for a Q&A session.

Working without the aid of his PowerPoint presentation, Dr DeMayo’s information about pain management and rehabilitation was not what some might have expected – his holistic, multidisciplinary approach involves very little in the way of narcotics use.

In fact, he’s much more interested in trying to get to the root cause of a problem to prevent the need for drugs, as opposed to masking the symptoms. And he also encourages clients not to underestimate the power of spirituality and optimism during the rehabilitation journey.

 Don’t throw the baby out with the bathwater – build on what works

Dr DeMayo talked about how he sees a lot of clients starting one rehabilitation modality and then stopping it, in favour of another – a practice he thinks is unwise.

“Don’t throw the baby out with the bathwater,” he urged, meaning that it’s important to build on rehabilitation work that has been useful in other areas then combine it with advice from another.

Dr DeMayo’s own multidisciplinary approach is very individualised. It builds on, and compliments, other approaches and experiences. In his practice he works with physiotherapists, nurses, orthotists, speech therapists, occupational therapists and exercise therapists to tailor solutions for his clients.

He encourages people with post-polio syndrome to never stop trying to find ways to manage the condition through medical, alternative and complimentary medicines like aromatherapy, massage, yoga, water massage.

In recent years, yoga is an exercise form he has been really impressed with in with his clients. “Yoga in post-polio is non-fatiguing, and stress lowering,” he said.

He warned, however, it’s important that the yoga instructor has an understanding of modifying poses to suit an individual’s ability and pain threshold.

Tap into your own brand of spirituality

One of the points Dr DeMayo spoke at length about, was the importance of spirituality and optimism in an individual’s rehabilitation.

It doesn’t matter what you believe in, he just encourages you to tap into it because he sees greater results in pain management and rehabilitation with individuals who do.

“It’s a mistake not to include spirituality –  or whatever puts you in touch with a higher power -when dealing with sleep problems, stress and pain,” he said.

Similarly, he advises individuals to pay attention to their thoughts and words. “Saying ‘I can’t’ is extremely disabling. Quoting the wise words of Henry Ford, “Whether you think you can do a thing or think you can’t do a thing, you’re right,” he said.

And Dr DeMayo says it’s the same with post-polio syndrome. Words like “I need to”, “I have to” and “I should” leave us stuck in the corner feeling guilty when they can’t be achieved, leading to further stress or sleep problems.

He suggests, instead, replacing this thinking with “I want…” or “I’ve got a difficult choice”.

He adds that insomnia, stress, anxiety and lack of peace, make the cycle of pain much worse, in the way that gasoline feeds a fire. So it’s important to use whatever techniques are available to help keep these aggravating factors at bay – another reason why he believes spirituality and optimism to be so crucial.

Set goals and know your limits

Self-empowerment and limit setting are critical, according to DeMayo. It’s important that individuals ask themselves what they can do to relieve their pain or increase their function.

This is because here’s a limit to how much activity each individual can achieve and it is impeded by inactivity, over-activity and age.

He said it’s important to listen to the body and modify activity based on how you feel during and afterwards activity. You don’t want a life that revolves around activity and depletes you any more than a life as a couch potato. There’s a middle ground and it can shift if your activity is in the right zone.

“Many folks with post-polio overdo it. We want people to work at capacity, not over. So in order to do that we have to cross the line slightly to work out where it is…but not by much,” he said.

And once you regularly reach your limit, you’ll find that it shifts, and you can do more.

My life with polio by Ann Jordan

Hello everyone – Brett thought you might be interested in my experience of Polio in the 1940’s. So here goes…..

There was no epidemic in South Australia when I contracted Polio early in 1944 but it was one of those infectious diseases that was always around. I remember they put a block of camphor in a little bag that was hung around the neck in the hope that it would ward off polio. Not much use in my case!

I was six years old and had just started year 2 at the Prospect Infants School.  My mother had been in hospital being treated for tuberculosis and was at home on remission. My father was caught up in World War 2 and was serving in the Pacific. Apparently I began to stumble and fall over and had difficulty playing at school so my mother took me to the Adelaide Children’s Hospital on three occasions before finally a Dr. Jolly diagnosed polio which we called infantile paralysis in those days. I was immediately admitted into their special ward for infectious kids and spent some weeks there while the illness took its time to render me paralysed in both legs. It was a scary time. There was very limited visiting time in hospitals in those days and of course, my mother as a TB sufferer was not allowed in. I felt abandoned.

The next stage of my life with polio happened at the Somerton Crippled Children’s Home where I was transported as soon as the critical stage of the illness passed and rehabilitation could commence. The home was a big old two story house on the seafront at Somerton. It no longer exists – sometime in the last few decades it has been torn down for re-development.

It is hard to remember how many children there were living at Somerton during the two years that I was there – perhaps about 50. For what seemed a long time I couldn’t walk and was in a ward with others who were bedridden. Later on, I remember being in a room with older children, many of whom were in wheelchairs and callipers. I was in callipers too but could get around. It is all a bit of a blur as the mind has a way of blocking out some of the memories that are too painful or unpleasant. It wasn’t that it was an awful place – it wasn’t, and I have the impression that the staff were good and kind people, but we were all orphans in a strange land with a strange illness that no-one fully understood and we didn’t understand what was happening to us.

Having said that I believe I had excellent treatment of the kind I have read that Sister Kenny developed. The physiotherapist was a Miss Edwards and she was unfailingly patient in exercising my useless legs when I couldn’t. I remember we spent a lot of time in the sea even in the cold weather and playing in the sand. The other therapy which proved useful in strengthening my arms and legs was the “jungle jim” where we swung on bars – the movement along the bars had the effect of making the legs move too.

I missed a year of schooling when I was having intensive treatment and couldn’t walk. The following year, 1945, I was able to get about sufficiently to attend school which was held at the home and was able to complete year two.

There were two really awful things that happened to me at Somerton that I do remember – one was contracting chicken pox and being put in isolation ward for the duration. I learnt to enjoy my own company and escape into books during those weeks which were very lonely but the staff were frightened of having an epidemic on their hands. The other awful thing was getting head lice and having my hair shaved off.  What a humiliation that was. However, this experience stood me in good stead in later years when I was teased for not being able to run or play sport. That sort of teasing which I suppose we would call bullying nowadays, was nothing compared to having a shaven head in a school room full of kids who delighted in “taking the mickey” out of one another!

So there were valuable life lessons learnt at Somerton.  I learnt to stick up for myself and despise bullies. The bullies at Somerton were not the staff but a couple of older children who remained paralysed and careered around in their wheelchairs beating us smaller ones with their sticks! Can you believe it – well it happened to me.

My father came home from the war early in 1946 and I went home. My mother was still ill but living at home with us. My poor Dad coming home to two wounded women after all he had been through! I was walking and getting stronger all the time. I started back at the local school in year three and two or three times a week took the tram into the Adelaide Children’s Hospital for physiotherapy.

That wasn’t the end of my polio story. I had made a recovery and could walk again but my right leg was still weak. Despite this I begged my father to buy me a bike so I could join in the rides with the other kids. One afternoon after school about three years later we kids were having a race down the back lane when I fell off my bike, dislocating my hip. This led to another year of treatment – several weeks in traction, followed by two operations and several months of crutches. This was early surgery and no-one knew whether it would be successful. But again I was lucky. I learnt to walk again, albeit that I had a twisted right leg that was even weaker than before and a pronounced limp. There was an upside to this latest disaster which I didn’t realise until much later in life. Because of this injury I was never able to play sport or engage in any strenuous exercise and I believe this saved my weakened polio legs from further stress. So in old age I have more strength in my legs than might have been the case had I been able to be more active.

Years ago those of us who were fortunate to walk again following paralysis, thought we were cured. Now we know that we were in remission and decades later are finding that our good muscles have been overused and are weakening again. Sadly, some of us are in wheelchairs and have had to use callipers and sticks again. I was fortunate to have excellent treatment at Somerton from dedicated staff and still have the use of my legs albeit that they are not as strong as I would like. Among the staff I remember Sister Fisher, who at the time often seemed rather cross. Looking back she had her hands full with trying to keep discipline. Even though we kids were disabled we were often naughty and disobedient. I particularly remember Matron Langdon who seemed to understand us so well. She had a sister who used to visit us from time to time who was also a polio victim. Between them they arranged a number of treats for us kids that have left happy memories of kindness and friendship.

As the years passed I never thought that much about polio until about 20 years ago when I started to notice some extra weakness in my legs. I had been cured (I thought) and although I suffered a residual weakness had been able to live a more or less normal life. One day I heard a programme on Radio National about the late effects of polio and realised that this was happening to me!

I made an attempt to access my patient records from the time in the ACH and Somerton to get a clearer picture of what did happen to me all those years ago. I was told that all records had long been destroyed. At a time when I was coming to grips with the return of that scary illness, I thought this was disgraceful when I was still alive and needed to know. I felt that those records could have put some shape into the past and helped me cope with my future  which was looking scary and uncertain. However, about that time I was fortunate to discover Polio SA. Through the advice in the Polio Newsletter and the friends that I have made in the organisation, I have learnt to manage my condition and not to fear the future. I hope to keep on my feet as long as my heart keeps beating.

Thank you to all who have contributed to my wellbeing, including Dr. Nigel Qadros, our phsyios Lee and Margo, and especially the gang at the pool on Tuesday mornings. What a good time we have together!

Ann Jordan.

Q&A session with world expert, Dr William DeMayo

During a rare visit to Australia for the 2016 APAC Post-Polio Conference in Sydney, rehabilitation expert, Dr William DeMayo will fly to Adelaide for a one-off event.
Talking exclusively to a South Australian audience, Dr DeMayo will provide valuable information about the latest post-polio rehabilitation and practices, based on his work with post-polio survivors in the US.

The talk will be followed by a Q&A session, hosted by a panel of experts including Dr DeMayo, Dr Nigel Quadros from the Queen Elizabeth Hospital and Ann Buchan from Unley Physiotherapy.

Don’t miss this once-in-a-lifetime opportunity to connect with world experts in post-polio rehabilitation, and ask questions about your own challenges with post-polio syndrome.

When: 12:30pm (for 1:00pm start) Sunday 18th September 2016

Where: Glenunga Hub Community Center, 70 Conyngham St, Glenunga SA 5064

RSVP: To allow for catering, please RSVP by Friday 9th September to Brett Howard at poliosa.office@gmail.com or call 0466 893 402

Refreshments provided

About Dr William DeMayo

Dr DeMayo is a physical medicine and rehabilitation specialist with 30 years of clinical experience. He is the Medical Director of the Post-Polio Clinic, Conemaugh Health System, John P Murtha Neuroscience and Pain Institute in Johnstown, Pennsylvania.