Facing 'crippophobia'
Captions: Queen Beatrix of the Netherlands with young polio patient. Same patient 50 years later.
FATIGUE has set in, seriously. Why am I here feeling this debilitated?
To grow, to listen, to learn and report.
Swimming at 6.30am in the hotel pool probably didn't help, exhilarating as it was. Odd sensation swimming 'lengths' in a triangular-shaped semi heated outdoor pool. Opera House just over the noisy Cahill Expressway, walled in by skyscrapers. The sky is only scraped by clouds on my Wednesday morning swims at home.
Attended a conference session that started to sound the same as others - about comorbidity, scary term, not everything is polio, Post polio as the Tip of the Iceberg.
We realise we're old and that carries other risks. But what about Dementia? Given brain fatigue and losing words, I ask if there are statistics on the rate of dementia among polios. This has always worried me. Does the fatigue that leads to vagueness lead to Worse? A: no stats, no observation of it being any worse in polio community.
I hit the wall. Coffee standing up in the crowd juggling crutch and bags is not the answer. Go for a hot chocolate in the posh cafe then to sit in comfy chair earwigging on a couple of Victorians analysing what they'd seen and heard so far. No time available for questions, they commented. True but questions at these events can be risky as people start wandering into personal issues.
Bracing has been a big issue here. Correct, modern orthotics, designed to make life easier. Big message: get over reluctance to make life easier! I felt like a stuffed chook at first with my brace. Anyhow, who knows what is correct bracing? Marmaduke Loke of Dynamic Bracing Solutions is the buzz word in gait assessments and the new heart throb of bracing. One friend was talking about selling a block of land to afford his flash product - $30,000 for her new solution. Polio New Zealand took the plunge and invited him to address their orthotists "embedding his thinking" in their country. The head of PNZ took delivery of his new brace last Saturday and stands 3 ins taller. Asked to show it off he confesses he doesn't have it on today, still getting used to the pain of standing aligned as we are designed to.
In this morning's round up Dr John Tierney mentions in the ideas so far that rocked him. One was Dr Antonio Toniolo's revelation that early research shows traces of the polio virus in the cells. Many of us suspected as much, as a cause of PPS.
An idea that jolted me came when someone commented on the Flexifoot tip on my elbow crutch, wonderful shock absorber for the shoulders. This led me to realise that these orthotic johnnies were not integrating crutches with their expensive orthotics. I bail up one of Marmaduke's colleagues who uses elegant silver elbow crutches and make the point. We don't sell that stuff, he says dismissively. But they should be integrated I insist, don't you see that?
This leads me to the other thread emerging: psychological impact of PPS! Being treated with dignity, demanding dignity of ourselves. Attended a session on the radical idea of health professionals learning to offer person-based care! Listening to what patients want, expect and balancing the two.
Denial as a coping mechanism was explored, also dealing with childhood trauma with a grief consultant specialising in trauma. Psychologist Dr Stephanie Machell was a breath of fresh air. No PowerPoint preso, hers was a performance art, she declared. Dr Machell equated the PTSD experienced by soldiers returning from Vietnam and not allowed to talk about it, to polios being told not to mention our war. "Crippophobia", she called it.
At the gala dinner on Wednesday night, the NSW Minister for Health Gillian Skinner was guest speaker and dropped another idea in the heat of the moment.
She talked about pressures on state budgets from the ageing population. Health Care's "perfect storm". Then about her grand plan for integrated health centres, partnerships with providers giving everyone 'skin in the game'. Then came her undertaking to ensure that NSW uses these integrated care centres for post polio. "We have a responsibility to care for all patients," she said. "We will work with you". The minister congratulated Polio Australia for holding the conference in her beautiful city.
There was warm applause, cheers even at the prospect of more clinics like the one we have in Victoria. Thanking her Mary-ann Liethof hoped someone was recording that undertaking. She voiced our excitement about the integrated care model to start the ball rolling and to be taken to the Commonwealth.
At dinner I sat at a very international table with two from Denmark (lots of smiles about our Princess Mary), a Netherlander, neurologist from Taiwan, an Italian architect who designs accessible hospitals and gardens, and a New Zealander. Among the 14 countries were represented - 155 polio survivors and 60 experts, some of whom were also polios.
In closing remarks for the day Dr Steve de Graaff commented on the conviviality and positive attitude of the conference.
This afternoon we are invited to dream up perfect post polio health services.
We want to grow, to learn to know, to dream. That's why we're here.
Below: Architect of the 'Life Stage Matters' conference, Polio Australia's Program Manager Mary-Ann Liethof.
