Twenty years of support, more than 200 meetings and dozens of friendships formed is what founding member of the Sunshine Coast Post Polio Support Group, Nola Dunbar, most fondly recalls.

What started out as informal gathering at Nola and her late husband John’s Nambour home in July 1991 has continued on to support hundreds of people throughout the region who are experiencing the Late Effects of Polio.

On 1 July, around 70 past and present members, partners, carers and supporters of the Group will meet to celebrate the longevity and success of this community group at the The Red Bridge Motor Inn Connexions Bar & Restaurant in Woombye.

“For the past 20 years many different group members have met regularly to provide support and information to one another, advocate, promote independence, and help raise awareness within the community, health and government sectors about the condition,” Nola said.

Just 11 when she contracted polio, Nola spent two years in various Sydney hospitals recovering from the viral disease that plagued the world during its peak epidemic in the first half of the 1900s.

Nola can still vividly recall the pain and boredom associated with recovering in hospital and said almost 40 years had passed before she began to experience the late effects of polio.

“Because you’re trying so hard to maintain the lifestyle that you had and keep up with everyone else, you’re just exhausted and it takes a real toll on your health,” she said.

“Many post polio sufferers are now experiencing considerable pain as the result of the late onset of the condition, which is called post polio syndrome or known as experiencing the late effects of polio.

“Because they’re not commonly known syndromes, there is still a lack of awareness and knowledge about them in the community.

“However, since the group was established, we have been working hard to raise awareness about the conditions and to provide support for Sunshine Coast residents to assist them to live as independently as possible.”

Nola now enjoys being a member of the Group, helping Cathy Newman and Jim Carseldine, who are the current Convenors of the Sunshine Coast Post Polio Support Group.

Spinal Injuries Association CEO Mark Henley said the Sunshine Coast Post Polio Support Group was one of six such groups that the Association coordinated throughout Queensland.

“As the population ages, incidences of post polio syndrome and the Late Effects of Polio will continue to increase,” Mark said.

“Regional groups such as the Sunshine Coast Post Polio Group are very important at providing practical support for people as they come to terms with how this condition, which they thought they had long gotten over, impacts on their lives today.

“The 20th anniversary lunch next month will be a great opportunity to commemorate the success of the Group and to look to the future and continue to provide support for locals experiencing this condition.”

The Spinal Injuries Association is the peak body for people with Spinal Cord Injuries, including Post Polio Syndrome and Transverse Myelitis in Queensland, and since 1960 it has supported and empowered people to live as independently as possible.

Issued 10 June.

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2011 disability parking changes

by Megan on June 6, 2011

Are you up to date with all of the disability parking changes that took effect from 31 March? Read about them on page four in the latest edition of the advocate. If you have any further questions about the changes, please email us your query at enquiries@spinal.com.au.

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It was a great story about road safety featuring our SEAT presenter Wayne Horkings on 7.30 Queensland on 27 May, which was Fatality Free Friday. You can watch it online.

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Tomorrow night (Friday, 27 May), one of our Association’s members and SEAT presenters, Wayne Horkings, will feature on ABC1’s 7.30 Queensland (formerly Stateline)!

Wayne will share his experience and speak about the importance of road safety as part of a Fatality Free Friday story.

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Fernvale residents who lost homes and possessions in the January floods are being inspired to stay motivated and positive through global program, Discovering the Power in Me, delivered by our Association’s Peer Support team. Read more in today’s The Queensland Times newspaper.

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Member to feature on ABC TV tonight

by Megan on May 18, 2011

Tune in to the New Inventors on ABC1 tonight at 8pm to see Spinal Injuries Association member Bryan Flemming showcase ‘The Flyan Chair’ he’s invented.

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Safety always your number one priority

by Megan on May 16, 2011

With falls and crushes the second main cause of all spinal cord injuries, we urge you to always consider your personal safety. While ‘planking’ may be just a few minutes of fun, those few minutes have the potential to lead to a lifelong, permanent injury. The Queensland Police issued this statement yesterday regarding the rise of planking. Please take care and stay safe.

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The Spinal Injuries Association welcomes the joint Federal and State government initiative to host a competition to design CityCat terminals damaged in the Brisbane flood.

The CityCat and river ferry services have become one of the most valued forms of public transport in Brisbane and in order to maximise the use of the new terminals offering best practice design, accessibility for all users will be the key.

That will require designs to seamlessly connect all users from roads and footpaths to every amenity associated with the terminals.

In dealing with these design issues, there is a fundamental tenet:

In order to maximise the community’s participation in anything, first you must maximise their access to it.

The partnership between Federal and State government in providing $145 million to get Brisbane’s public transport river fleet moving again with best practice terminal design will be supported by all who use the river for transport to employment, shopping and recreation, especially given the competition emphasis on design excellence.

This funding initiative and best practice approach to design will contribute to maximising the social and economic performance of Queensland’s capital city.

Issued 5 May.

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An award-winning injury prevention program that has the support of the Redland City Council will give Redlands College teenagers a reality check on how easy it is to sustain a permanent disability next Monday, 9 May.

Last year the Council generously donated $2,000 towards the Spinal Education Awareness Team (SEAT), which has inspired 1.4 million Queensland children to stay safe and injury free since 1987.

Mayor Melva Hobson will join SEAT presenter Wayne Horkings at the College to speak to 130 Year 12 students about the importance of considering the consequences of potentially dangerous behaviour.

“Spinal cord injuries have devastating and lifelong consequences, with the highest injury rate being among 15-24 year old males,” Cr Hobson said.

“We are dedicated to supporting any initiative that aims to educate about, and prevent spinal injuries, as well as providing for greater outcomes for spinal injury patients.”

“Redland City Council is dedicated to doing all we can to ensure our community is educated, responsible, and most importantly safe. With around 90 Queenslanders suffering from spinal injuries each year we need to be aware and vigilant – a spinal injury is permanent with the only cure being prevention.”

Wayne sustained quadriplegia in a car accident as a 17-year-old and has dedicated his life to preventing this injury from happening to others.

“There is no cure for a spinal cord injury. You can’t undo the permanent, lifelong damage to your spinal cord,” Wayne said.

“I stress to students, particularly teenagers who have their licence or are learning to drive, that a split-second action such as texting while driving or giving into peer pressure and getting into the car with someone who has been drinking can cause them to be paralysed for the rest of their lives.

“I know firsthand what it’s like to wake up from a coma and realise you’ll have to use a wheelchair for the rest of your life. If my story motivates these teens to stay safe, then that’s a great outcome.”

Spinal Injuries Association Chief Executive Officer Mark Henley said the power of the SEAT program was the presenters.

“We have 18 volunteer presenters throughout Queensland – from Stanthorpe to Rockhampton and right up to Cairns – and all of them have a spinal cord injury,” Mark said.

“When our presenters, who all use wheelchairs, share their very personal stories with students, you can visibly see that their words are having an impact.”

As a service of the Spinal Injuries Association, SEAT can be booked via the online form at www.spinal.com.au, by phoning 3391 2044 or by emailing seat@spinal.com.au.

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Six years ago, Louise Remilton from New Farm, was like most people who had never heard of Transverse Myelitis.

However all of that changed after she was admitted to hospital with burning sensations in her legs, where she spent six weeks undergoing many and varied tests, before being diagnosed with the uncommon neurological condition.

Symptoms include a sudden onset of muscle weakness or abnormal sensations in the toes and feet, paralysis, urinary retention and loss of bowel control, although these symptoms can be experienced gradually.

Next month marks Transverse Myelitis Day (Tuesday, 17 May), with members of the Spinal Injuries Association and medical professionals meeting at the organisation’s Woolloongabba office to participate in a live video conference with USA Transverse Myelitis Association President Sanford Siegel, as well as enjoy a demonstration by assistance dogs from Canine Helpers.

Louise said one of the most challenging parts of her TM diagnosis was trying to explain to her husband David and son Michael, then 15, as well as concerned relatives and friends, what it meant to have an illness that she herself didn’t understand.

“Our family dynamics changed,” Louise said.

“We used to do active things – skiing, camping, outdoorsy things. When I first got sick, I couldn’t do anything. Finding common ground for us to share activities again was difficult.

“But after a while I realised I could still go canoeing – not far and not huge distances away from home but it was possible.

“I stopped looking at what I couldn’t do and found things that I could.”

Due to the physical challenges of having TM, Louise had to resign from her job, but she is now one of the volunteer Convenors for the Spinal Injuries Association’s TM support group and counsels newly-diagnosed people keen to talk to someone who understands.

“It’s enormously rewarding. It helps me get out of myself. I hear people say things I used to say,” Louise said.

A strong advocate of being responsible for your health and knowing exactly what doctors are telling you has also seen Louise read widely about TM, and last year she travelled to the US to attend the Rare Neuroimmunologic Symposium in Dallas, Texas, where she met people from around the world who have TM.

Spinal Injuries Association CEO Mark Henley said TM was a viral disease caused by an inflammation at a particular level or segment of the spinal cord.

“It can occur in children and adults of both genders and in all races, but the peak incidence occurs between the ages of 30 and 39 years,” he said.

“While some people may experience minor or no residual problems, others may continue to experience ongoing impairments that affect their ability to perform everyday tasks.”

The Spinal Injuries Association supports and empowers 2,000 Queenslanders who have spinal cord injuries, polio and TM. The Association is the Australasian Affiliate of the USA’s Transverse Myelitis Association (www.myelitis.org). For more information on the Spinal Injuries Association, please visit www.spinal.com.au.

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