Day two
THIS morning’s welcome comes from Steve de Graaff and Polio Australia’s Gillian Thomas. Steve notes the atmosphere of conviviality throughout the sessions: we focus on the positives of life. Gillian warns: “if you hit the wall, go and snooze”.
The plenary speaker was Dr Frans Nollet, Netherlands, on Evaluation and improvement of functional abilities for post polio patients. (A plenary session is one at which all attendees are expected before a conference breaks into sessions of choice).
Dr Nollet noted that Australia’s population was 23m and the Netherlands 17m. He found in Australia space and youth, a feeling for nature.
Holland experienced 15,000 cases of polio since 1924. His graph showed a spike in 1992-3 in a Bible belt where 60 cases of adults in their 30s, quite severely affected. A similar spike occurred in the US among the same religious.
Holland has a Post Polio medical centre with 60-80 referrals a year and 1000 plus patients seen. The diagnosis by the multi-disciplinary team was by exclusion. The centre uses muscle imaging as a standard test to discover evidence of loss of strength.
Emotional issues were important too: denial as a coping mechanism; change being difficult to handle. Afraid to fall is a big issue, Dr Nollet said, preventing many patients from exercising. Worry about the future, uncertainty, common.
Therapy included understanding what patients want to achieve and talking to a psychologist is encouraged.
“You can’t go faster than people are ready for”, he concluded.
There was another session from Dr Nollet and another speaker about Ivig as a treatment for Post Polio Syndrome. This lost me and seemed to be focussed on thumb muscles. Reckon there were more significant parts of the body to worry about. So moving on…
Nicola Heath presented on “Ageing successfully with long term disability; insights from Australian polio survivors.” (Her session pictured above).
Now, sitting there, already feeling close to that wall, some of her quotes seemed the kind of thing I might say. They were attributed to ‘Alice’.
Polio survivors told her they were:
constantly evaluating every situation to get through the day,
evaluating how to get around.
Fairness and respect was important.
Polio has been ‘wiped out’ so education was required to undo our sense of disconnect.
Aids and equipment funding was vital.
Acceptance and compromise.
Over lunch I ran into Nicola who seemed vaguely familiar. She warmly said how good it was I could be there and something about her presentation. I commented about familiar quotes. “I called you Alice because you were so fond of that book,” she smiled. Now vaguely recall taking part in her study. Polio brain…
Falls prevention from Merete Berensen, physiotherapist of Denmark
Steve de Graaff’s comment about not making 66 years of age, made this session worth attending. Merete talked about trying to improve muscle strength and balance and to reduce the fear of falling. At the Danish clinic balance training was big, to deal with day to day movement like stepping over a carpet, an escalator or lurching bus.
Traps at home included: rugs, uneven tiles. Take portable handgrips when travelling (suction style).
Dr Marny Eulberg, spoke next on ‘Polio effects may just be the Tip of the Iceberg’.
I checked out her bio:
“Doctor Marny, is a polio survivor. She and her younger sister contracted polio in 1950 when she was 4. She wore a brace on her left leg until the 8th grade. She learned to sew, re-upholster, bake, and can (preserve) produce in the time she attended 4-H Club in her youth. (She also judged meat, including carcasses of meat at state fairs)! Asked if and how Polio slowed her down, she replies, "I just couldn't march with the high school band… Beginning in August of 2014, Dr. Marny started seeing polio survivors in her fully wheelchair accessible home in Wheat Ridge, Colorado”.
Not surprisingly this was a very down to earth session – but what is our iceberg?
Dr Marny made the comment that our bodies are working twice as hard with polio. That was obvious, but a relief eh?
We could be liable to accidents when under severe emotional distress, not paying attention. The risk of car accidents for example, was twice as high after the driver had suffered loss. Another relief came when she mentioned dementia, the fear of dementia from the “polio brain” and fatigue.
At question time I asked were there any figures on rates of polio survivors with dementia. She had not seen any evidence. Good enough.
Dr William de Mayo MD’s session on ‘Sleep Hygiene – sleep as a trained behaviour, how to improve duration and quality of sleep to improve health and wellness’ – was understandably popular. He deals regularly with chronic pain and sleep issues. He said the amount of sleep does not decline as much as popularly understood with age. The amount required is seven hours, not declining to five or six. He used the amount of oil required by a car as an illustration. You can’t decide that your car suddenly only needs half as much oil.
Dr de Mayo had a good laugh about people using television to sleep. “Why would you use murder, rape and other violence to help you sleep!”
Bladder issues were another alleged interrupter of sleep. Often he said, if you wake, the bladder muscle spasms involuntarily and you think you need to go. Watch the amount of flow to check this.
Beware of daytime napping, this could rob you of needed nighttime sleep. Do go to bed at a specific time to set up a routine. Problems like restless leg syndrome need investigation to improve sleep.
Polio and PPS Changing Identities Dr Stephanie Machell (USA)
It has long worried me that we have serious underlying baggage, so made sure I attended this session.
Personal Explanation: 10 years ago I took Steve de Graaff’s advice to see the PNV psychologist before making an appointment with him. He had spoken in 2007 at the meeting in Sydney to set up Polio Australia, listing all the services we were going to need: orthotists, OT, Speech pathology, etc etc. Was that the future? I repaired to the courtyard in tears – he either found me there or I confessed. At the first appointment, in the waiting room at Epworth, I had flashes of him in shirtsleeves beating me up. When he came out, he was in shirtsleeves…
Thus having no memory of childhood, kind of dreading to know what’s buried, understanding the polio brain is important to me:
Dr Machell, PsyD, is a psychologist in independent practice and consultant to the International Rehabilitation Centre for Polio, Spaulding-Framingham Outpatient Centre, Framingham, Massachusetts. She specializes in working with medical trauma, physical disability and chronic illness. She discusses how to deal with the fears polio survivors may face when they think about pursuing intimate relationships.
Dr Machell, friendly white haired lady, who asked straight up for the power point screen to be turned off, “this is a performance art”, she explained. While not a polio herself, she was polio trained by her parents’ experience. Her father had polio and she grew up with his rehabilitation, her mother had it at four.
“You are the experts on your lives. There is no training in mental health about polio.
“I learned to listen and not listen to polio survivors – there is a lot of gallows humour,” she said. “I don’t think there is ‘a’ polio survivor, irregularities abound across the room. But I do have stocklines for patients.”
Mental health issues do still carry stigma, she conceded, but there were new options and she had collected a few pieces of basic information:
Rhode Island has a lot of money
Polio comes with trauma and a lot of patients are not ready to go there
Polio is shot through the thread of your being
Normal falls apart with PPS
Grief over the loss of identity is common
Never give up on the things that give your life light and colour
Treat mental issues and post polio symptoms can improve.
Advice: the worst position in a polio family is that of the spouse. Love does not mean mind reading. So many patients ask me to tell their spouses “I can’t do this any more”.
“People come in to see me terrified they are on a long slow decline. But I remind them there is a plateau. Get comorbidities treated and take advantage of that plateau. This offers big relief”.
Questioners ask how to find a psychologist such as her?
Dr Machell admits there is a problem finding appropriate help in the United States as well. “Look for someone dealing in medical trauma”, she advises. “Someone with grief experience also useful, realise that loss of physical ability is loss.”
In a second session, she equated the polio experience with that of Vietnam veterans but how do you shut off the part of you that needs and wants care?
You were sold a bill of goods about polio, told to go home and be a perfect little person and swallow the pills. Then all the things we did to overcome, didn’t work any more. Many people were desperately exercising to get back what they’d lost. One patient believed if she stopped she wouldn’t be her any more.
Polios are not “passers’ we have to face up and deal with the international mentality of “crippophobia”. Disability is the biggest elephant in the room, she said.
The third orthotists to speak was Bruce “Mac” McClellan, a colleague of Marmaduke Loke of Dynamic Bracing Solutions. He sported a particularly elegant pair of silver elbow crutches.
Why use a brace he asked? Because it makes you better looking.
Bracing was a conservative approach and non-invasive. Surgery was not always the best option. An orthotic is reversible yet can be life changing.
‘Mac’ came up with his own design, not like what was available. Shortcomings of traditional bracing included the lack of practical understanding of the body’s twisting and torque.
There had to be user by in in the selection of braces, using modern materials. Adequate funding source, was also addressed.
While he spoke, it occurred to this brace wearer that orthotists and crutch makers were different operations. They needed to integrate their expertise. Why should we have a super brace and end up on hospital elbow crutches?
Tried to run this past Mac, he was initially dismissive. “We don’t make that stuff”, he said. “But you should,” I persisted. “The quality and design of sticks and crutches, should be as good as that of the braces”. Ah well, seed is sown.
At the gala dinner on Wednesday night, the NSW Minister for Health Gillian Skinner was guest speaker. 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, as if created in the glow of the moment, 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, somewhat surprised by the idea too, PA’s National program manager and conference architect Mary-Ann Liethof, hoped someone was recording that undertaking. She voiced our excitement about the integrated care model to start the ball rolling, 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, a neurologist from Taiwan, an Italian architect who designs accessible hospitals and gardens, and a New Zealander.
They were amazed when dinner arrived: beef and fish dishes alternating. “Is this a quaint Australian custom?” asked one of the Danes? “In Italy we all have the one plate”, spluttered the Italian architect.
Was quaint to see that a conference dinner in a five star hotel followed the same practice of a local RSL or Rotary Club meal.
“We just swap according to what we want,” I explained.
pictured: conference architect Mary-Ann Liethof's 'address in reply' to the Minister at the dinner.
