10 months ago

Inform issue 24 – Autumn 2018

  • Text
  • Survivors
  • Rehabilitation
  • Continence
  • Chronic
  • Autumn
  • Ndis
  • Inform
  • Disability
  • Australia
  • Polio
In this issue of Inform, we celebrate achievements. We follow Independence Australia's residential client Peter as he looks back on some of the adventures he has had along the way of 50 years as a wheelchair user.

polioperspectives Beth

polioperspectives Beth was given 30 names of polio survivors and the network grew quickly. Her job was to gather and disperse information. Copies of material Edith brought back were sent interstate in the hope of encouraging establishment of self-help groups all over Australia. Within a year, networks of polio survivors were formed in each state and territory. In Victoria, Beth had managed to contact 400 polio survivors, publish the first issue of a newsletter and organise a seminar that attracted people from all over the country. The aim was to discuss the needs of post polio survivors and to share information. Recommendations from the seminar were taken up with the Health Department. In 1989 Rodney Harris, Beth’s son-in-law, took over as Executive Director of ParaQuad when Edith Hall retired. The polio survivor’s network became the Australian Polio Network. By 1990 the polio network had more than 500 members. Driven by the need to learn more, Beth put her hand in her own pocket and with ParaQuad raising the balance of funds she traveled to the next Post Polio Conference in St Louis and from there to England to learn more from the British Polio Fellowship. One of the main challenges after building the organisation, was to educate health professionals about post-polio syndrome and the late effects of polio. In 1990, the Department of Community Services Victoria approved an initial 0 for twelve months to produce and mail the network’s newsletter. “We had to teach the doctors. It was an uphill battle…one doctor even wrote an article to the newsletter belittling post-polio syndrome,” Beth said in interview in 1997. Support groups were forming in regional Victoria at Geelong, Essendon, later in the East and on the Mornington Peninsula. In 1995 the Network name was changed to the Australian Polio Network (Vic) then to Polio Network Victoria. In 1994 two community officers (polio) were based at ParaQuad. Their role was to help set up groups, to promote polio immunisation, to raise awareness of needs, to organise workshops, and provide guest speakers to community groups and schools. In 1996, the first Polio Day was held at Ballarat attracting more than 100 people, including representatives from 13 of the 15 support groups. Many survivors met people they hadn’t seen for decades. Being such a success, it was decided to run Polio Day annually. When ParaQuad Victoria changed its name in 2008 to Independence Australia to reflect a broader focus, PV’s Polio Advisory Committee became the Polio Reference Group, with members representing each area of the state. Annual convenors’ meetings involve representatives sharing their group’s needs. By 2012, when PNV celebrated its 25th anniversary with Polio Day at Melbourne Zoo, with Victorian Governor Alex Chernov AC QC, there were 16 polio support groups across Victorian metropolitan and country areas, run by local members according to each group's needs. Only five years on, the number has declined to around 10 active support groups, with convenors of several of those wondering how much longer they can continue. As members age, become more frail and unable to attend meetings, the challenge is how to stay in touch. Some groups like Bayside manage to fund transport and carers for lunchtime meetings to keep members together. Bayside also includes survivors of other neurological disorders such as cerebral palsy. Whenever an article about polio survivors and post-polio reaches mainstream media, new enquiries are made, and those who couldn’t bear to think about polio again come forward. The information stream must keep flowing more are out there. While the electronic option of information dissemination is attractive for fatigued minds and bodies, you can’t beat the buzz experienced by the 90 polio survivors, friends and family members, who attended Polio Day 2017 in the fabulous ballroom at Bendigo. The first Polio Day in Ballarat was social, while the event now includes specialist guest speakers. There is nothing like being among fellow travellers. Long may we make the effort. Fran Henke 28 Independence Australia

polioperspectives Polio Day celebrated in goldfields splendour Polio Day 2017 held at the magnificent Bendigo Town Hall on 21 October was officially opened by Bendigo Mayor, Cr Margaret O’Rourke, who acknowledged the birthdate of Jonas Salk, developer of the vaccine. She also thanked Bendigo Rotary for its financial support to the day. Dr Andrew Sinclair, Manager of Psychology, at Independence Australia was first speaker on ‘Responding to the challenge: how to live well with a chronic or degenerative health condition’. Dr Sinclair noted this was his tenth year at Independence Australia, coming to the role from working with patients in palliative care. At first he thought working with people with disabilities would be easier than that. “But I have learned a lot in 10 years and the profession has developed in that time too. One thing is the challenge of living with physical disability that cannot be fixed completely.” Andrew was referred patients who had been labeled as ‘difficult’. He soon realised they were not difficult but simply being assertive, trying second opinions, looking for other treatments, and taking responsibility for their own health care. “It’s okay to ask questions and get second opinions. Become your own expert,” Andrew said. People with chronic conditions experience anxiety and depression more than twice the general population, he continued. Anxiety is Inform Autumn 2018 29