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 The

polioperspectives The challenges of a new year As we celebrate 30 years of the Network, I believe the recent Polio Day in Bendigo highlighted the resilience not only of the Network but also of all the wonderful people who attended the Bendigo Town Hall. There we heard speakers reminding us of the importance of maintaining good mental health in the face of challenging physical changes. Polio Network Victoria Committee held its last meeting of the year, and we had a great deal of discussion on the way we proceed into 2018. Most committee members travel considerable distances to attend meetings throughout the year and it may be time to consider alternate meetings by teleconference with members only required to phone in rather than travel to West Footscray. We also need to decide on: the frequency of meetings, how we attract new members, ways of connecting with the many thousands of polio survivors who are not in touch with local support groups, Polio Network Victoria or indeed, Polio Services Victoria, and how we celebrate Polio Day in 2018. We welcome your ideas and suggestions to ensure the Network continues to provide vital information and support to the many thousands of polio survivors who live in our State. As with so many volunteer organisations, it is becoming increasingly difficult for many support groups to continue in a formal way. Sadly some have had to go into recess, while a number of groups have "hung up their equipment" and closed. I thank all convenors, past and present, for the valuable work they contribute in ensuring as much information as possible is available to members and for maintaining, most importantly, a contact point for the Network. Recently an Administration Assistant has been appointed at Independence Australia to assist us with general organisation of meetings, minutes, and information dissemination. Thanks to IA for this valuable support and a special thank you to Hanna for the wonderful work she has done to date. Thanks also goes to Alison Crowe and Lachlan Hodgson for providing support for the Network through some difficult times and to Richard Burn and Peter Turner (CEO) for their backing. Another fortunate happening is that Fran Henke has kindly agreed to be our Polio Perspectives editor and researcher for articles to be included in Inform. It can be difficult and time consuming to source relevant, useful and up-to-date information and this task could not have gone to a more able person who is already very busy. Thank you Fran. Late in November, I attended the Polio Australia Annual General Meeting held in Canberra. Part of the agenda again for this year was a visit to Parliament House for the purpose of ‘walking’ areas of the House to highlight the fact that as polio survivors, "We Are Still Here". On a personal note, I would like to express my thanks to the many people who made contact following the passing of my dear mum, aged 97, in August last year. Mum fought many a battle on my behalf during the early years and most importantly taught me how to live my life to the fullest. We look forward to a bigger and brighter Polio Network Victoria year in 2018. Bev Watson Chair Polio Network Victoria 26 Independence Australia

polioperspectives Now we are 30 This year Polio Network Victoria celebrates 30 years of support to the State’s polio survivors. With the number of support groups in decline, PP Editor Fran Henke looks at how the network grew, how best to continue to look after each other and how to find those polios who still haven’t come forward and need information. On October 18, 1987, a meeting was held in Camberwell to bring together for the first time, Victoria’s polio survivors. It came about this way. From 1982-89, Edith Hall was the Executive Officer of Independence Australia (formerly Paraplegic and Quadriplegic Association of Victoria, founded in 1957). She had polio in 1937 and was acutely aware that nothing was being done in Australia for polio survivors. She decided in 1987 to attend the fourth Polio Survivors Conference in St Louis, Missouri, USA. She wanted information on treatment and rehabilitation. At that stage awareness of late effects of polio (LEOP) was scant. Stepping back a little: by 1984 in the United States, a growing awareness of LEOP prompted researchers to organise an international conference at the Warm Springs Institute for Rehabilitation, Georgia (founded by Franklin D. Roosevelt). The term “Post-Polio Syndrome" was coined around this time. The second international meeting was held at Warm Springs in 1986 and in the following years there was a significant increase in clinical research into the long-term effects of polio. By 1994 another conference signalled acceptance of Post-Polio Syndrome as a legitimate clinical entity, though it took many years for that knowledge to spread our way. From the 1987 Missouri conference, Edith Hall brought back books, leaflets, papers, audio and videotapes. The Board of ParaQuad was sympathetic to establishing a polio network, so she held a public meeting. “I could not believe it,” she said in 1997, “on a Sunday [October 18, 1987] in Camberwell and 125 people turned up”. Beth Brodribb, who had been working with ParaQuad’s sheltered workshop, was asked to help create a network. Inform Autumn 2018 27