inform ~ spring 2015

SPRING EDITION 2015InformA newsletter for our community

incorporating

Merger announcementA bright time in winterPolio Day 2015

polioperspectives

DREAMING THE IMPOSSIBLE DREAM

2 Inform

Welcome

Inform incorporating Polio Perspectives ispublished quarterly by

ABN 80 973 805 243

208 Wellington StreetCollingwood Victoria 3066

PO Box 1189Collingwood Victoria 3066

T 1300 704 456F 1300 704 451E [email protected] [email protected] www.independenceaustralia.com

EDITORAlice Maynard

DESIGNERKelly Reynolds

PRINTERGenuine Print

Chief Executive Offi cerPeter Turner

BOARD OF DIRECTORSChairmanBrian Meltzer

Deputy ChairmanCliff Wise

MembersPeter DaddoMichael DaddoJohn Llewellyn (Lyn) Davies Elizabeth Jones Jeremy LongCatherina TohPeter Turner

Inform incorporating Polio Perspectives, is the offi cial newsletter of Independence Australia. We welcome articles of interest and reserve the right to edit or reject submissions as we see fi t. Published articles do not necessarily refl ect the policies of the Organisation. Any information included is not intended to be a substitute for professional medical advice.

Deadline for the next edition isFRIDAY 16 OCTOBER 2015

Here in Community Solutions we’re all very excited following the recent announcement that Independence Australia will merge with DASSI, another disability services organisation in October. With the introduction of the NDIS, this is a great opportunity for DASSI and Independence Australia to build on our combined strengths. More details will be made available in the coming weeks, but should you have any questions please don't hesitate to contact me on 1300 704 456.As you know, the NDIS trials in Victoria and across Australia are well underway. In this latest issue of Inform we’ve put together a snapshot of the NDIS in the Barwon region, Victoria’s trial site. As the scheme progresses towards a full roll-out from July 2016 we will keep you informed on any updates.

Richard Burn

Community SolutionsFrom the General Manager

Helping the environmentTo reduce our impact on the environment we’d love to cut down on our printing and increase what’s sent out via email. You can help by letting us know your current email address. Simply contact [email protected], state your full name and advise whether you are a contact of Independence Australia or Polio Network Victoria. Thanks in advance.

To ensure Inform remains your go-to magazine for disability news and events, we decided it was time for a bit of a make-over. Behind the scenes we’re working on a new and improved magazine which will launch at the start of 2016. Watch this space!

A NEW LOOK

3Spring 2015 | Inform

Living arrangements 11%

Our News

DASSI and Independence Australia set to join forces Two of Victoria’s largest disability service agencies, DASSI and Independence Australia, have signed an agreement to merge in October 2015.Both DASSI and Independence Australia are community service agencies that focus on assisting people with disabilities to live full and independent lives with the care and support they need.“In an increasingly competitive environment, in the lead up to the NDIS, organisations such as ours who are fully committed to our clients and putting care before profit need to be in a position of strength,” said Independence Australia Board Chair, Brian Meltzer.“Our staff are the key to delivering quality services to people with disability and greatly value their commitment and expertise. A big change like a merger is a great opportunity to build on our combined strengths in the NDIS environment,” said DASSI Board Chair, Dr Neil Cowen.“This is an exciting opportunity for Independence Australia and DASSI to maximise our shared common values, visions and strengths.

Both boards are committed to establishing a thriving new service which increases value to our clients and customers,” said Mr Meltzer and Dr Cowen. Merging the two organisations will establish a new service that will continue to attract funding, support more clients and create a shared commitment to supporting people living with a disability, enabling them to regain and retain their independence.Peter Turner, Independence Australia CEO and Charlotte Stockwell, DASSI CEO said, “As we transition to one organisation, business will continue as usual. The proposed merger will create a larger, more sustainable attendant care service, whilst maintaining individualised services, flexibility, choice and control for consumers. We are both pleased and excited about the opportunities this merger will create for our clients, our staff and our communities.”Independence Australia and DASSI will consult with clients, consumers, staff and key stakeholders to shape the direction of the new service over the coming months.For further information please contact Richard Burn, General Manager Community Solutions on 1300 704 456.

The NDIS in VictoriaParticipants with approved plans

4,392Support needs

Trial sites

Plans approved within 90 days

40%Average support package

$35,317Gender of participants

59% 41%

Social Participation 27%

Economic Participation 9%

Education 9%

Independence 24%

Health and wellbeing 20%

Source: For more information see NDIS 8th Quarterly Report to COAG Disability Reform Council 30 June 2015

Colac OtwaySurf coast

Greater GeelongQueenscliff

4 Inform | Spring 2015

Our News

A bright time in winterFor a group of Independence Australia clients, the sun recently shone brightly in the midst of winter as they enjoyed some valuable time away at the scenic Phillip Island.The group, all with a disability, enjoyed a much needed holiday along with their carers. They enjoyed fish and chips on the beach, fed pelicans, toured historic sites and of course attended the Island’s famous penguin parade.Beyond the activities, which many experienced for the first time, something deeper also occurred as they forged new friendships and got a chance to relax away from their usual surroundings.The Independence Holiday Program is provided free of charge thanks to the outstanding generosity of our donors, whose kind gifts make these trips away each year possible.All those who attended had a wonderful time and we’re already planning our next trip. Keep a look out for more details coming soon if you’re interested in joining us.

Thanks Channel Ten!We recently received the fantastic news that a donation of $4,000 is coming our way! Channel Ten made the donation thanks to Andrew Daddo’s entertaining stint on ‘I’m a Celebrity Get Me Out of Here’ earlier in the year.Whilst in the jungle Andrew chose Independence Australia as his recipient charity. Although Andrew couldn’t secure enough public votes to stay in the competition, and ultimately become king of the jungle, we’re all delighted with this unexpected donation.Thanks Andrew and thanks Channel Ten.

Entertainment™ BookThe 2015 Entertainment™

Book is now available and the Melbourne edition costs just $65!What’s more, $13 from every book we sell this year is donated directly to SpinChat. SpinChat is our educational program which raises awareness and promotes prevention of spinal cord injuries.So to start saving buy your Entertainment™ Book today! You can purchase online at the Independence Australia website or to make a cash purchase please contact Megan Murphy on 03 9418 0463.P.S. Entertainment™ Books are available for many regions across Australia, so if you don't live in Melbourne simply visit our website to see what's available near you.

Unwheel AdventuresSpinChat speaker Anthony Bartl recently hosted a film night to celebrate the launch of his documentary, Unwheel Adventures.In July friends, family and many from the wider disability community joined Anthony at Village Cinemas in Crown, Southbank, for the very first screening. The documentary details Anthony’s trip to Africa in late 2013 and some of the obstacles he faced whilst travelling. Anthony is quadriplegic and going on safari certainly brought with it some challenges.Unwheel Adventures provides an incredible insight into Anthony’s trip of a lifetime and highlights an important message that he lives by, people with disabilities have the same right as anyone to pursue their dreams. Congratulations Anthony and thank you for a wonderful evening.Anthony will be holding further screenings of Unwheel Adventures. If you’re interested in attending please check the Independence Australia Facebook page for announcements.


Farewell to LeanneLeanne Pye is leaving Independence Australia after 24 years of loyal service as a support worker. Leanne will be sadly missed by the many clients she worked with during that time. On behalf of everyone at Independence Australia, in particular the rostering team, we would like to thank Leanne for her commitment and extend our very best wishes for her future.

Our News

Working beesOver the past six months we have been fortunate enough to host a number of working bees at some of our community houses.Thanks to volunteers from Westpac Bank who took time out from their usual jobs, the gardens and living areas at our Coburg, Williamstown and Mt Dandenong Road properties were treated to a make-over.Plants and tools were kindly donated by Bunnings, whilst soil and other garden materials were paid for by donations from Independence Australia employees. Thank you to everyone for their generosity.

A community website for people with spinal cord injury in Victoria and throughout Australia. Visit the website for comprehensive information about spinal cord injury, how to keep healthy, how to access supports and services and tips for returning to work and leisure and engaging in the community.

Register now to contribute on discussion forums and comment on articles on the website.www.spinalhub.com.au

Thank you!


Melbourne Victory take home the TAC Independence CupIndependence Australia was thrilled to once again be the recipient charity for Melbourne Victory’s end of season clash against Central Coast Mariners. On 26 April the two teams played for the annual TAC Independence Cup in the final round of the Hyundai A-League.The TAC Independence Cup is a joint initiative between Melbourne Victory, the TAC and Independence Australia to raise awareness of the challenges faced by people living with spinal cord injuries.A number of Independence Australia clients and staff were invited along to enjoy the game at AAMI Park, and they weren’t disappointed. In an exciting match Melbourne Victory scored three goals to Central Coast Mariners' one, which meant Victory once again took home the Independence Cup as well as the Premier’s Plate.Independence Australia would like to thank Melbourne Victory, the TAC and everyone who came along to the Independence Cup. It was a fantastic game and it’s great to see the message of spinal cord injury prevention being shared so widely!

Our News

The day Zsolt’s life changed forever"I had a great job as a train driver and I loved it. I was a fitness fanatic training at the gym four times a week, boxing twice a week, swimming and cycling." "Physically I was doing well. Added to that, I was also renovating my home and had a beautiful two year old daughter."However a motorcycle ride would change Zsolt’s life forever. He had an accident near Saint Andrews, Victoria, and became a T10 paraplegic. Following the accident Zsolt went through a range of emotions, as you would expect."I just didn't know how I could cope with this new life; learning how to go to the shops, getting in and out of a car, and many other personal challenges that I faced just to exist. As the months went on I became moodier and I was finding it hard to sleep. Then I realised that I was missing sport."Zsolt decided to try his hand at archery, basketball, tennis, swimming, sailing and even hand cycling, but nothing seemed quite right. “The guys at Independence Australia suggested wheelchair handball and it wasn’t long before I knew that this was the game for me. Other players facing similar challenges became my friends and being part of a team gave me great support.”

Wheelchair handball can be played by teams of four or seven and has been described as being very similar to soccer, except of course it’s played with your hands. The rules are easy to learn and most disabilities can play.As a key member of the Darebin Wheelchair Handball Club, which trains in Reservoir on Tuesday nights, Zsolt is now on the lookout for new recruits.“We are looking for new players to come along and give it a go. The club is expanding and as more teams are established there are plenty of opportunities for players of all abilities.”If you fancy giving this fantastic sport a go, be sure to contact Zsolt on 0439 609 298 for all the details. You can also visit the club website at www.dcwhc.org.

SpinChat speakers Antonio and Anthony with Melbourne Victory Captain Mark Milligan


Our News

Victoria valiant in defeat at Marie Little OAM Shield The torch of Marie Little OAM’s legacy shone brightly at the national netball tournament named in her honour, for athletes with an intellectual disability.Despite defeat on 19 July, the Independence Australia Victorian All Abilities State Team held their heads high and made the most of the opportunity to compete against New South Wales and South Australia in Adelaide.Reflecting on the tournament, Head Coach Janet Parker commented, “The Marie Little OAM Shield offers

a brilliant opportunity for competitors. Without the support of Independence Australia, these players would not have access to such an affordable competition. It’s a great honour to represent Victoria and this playing group has represented our state with pride.”2014 runners-up, New South Wales, emerged with a clean sweep after a full day of matches and claimed the title with a 16-9 win over South Australia.This was the first year that the Marie Little OAM Shield has been played since Marie passed away on the evening of the tournament in 2014.Players, parents and carers of all three competing teams gathered for a dinner the night before the tournament, where a letter from Della Thilthorpe, Marie’s daughter, thanked the teams and the netball community for their support.

Spinal cord injury in spotlight at Wings for Life World RunOn 3 May runners all around the world came together for the Wings for Life World Run. 101,280 registered athletes took to the streets in 35 cities for a truly global race.What made the race even more unique is that all runners set off at the same time, 11am UTC (9pm AEST). As if that wasn’t enough, the race had no finish line. Instead, the runners were followed by a Catcher Car, which left 30 minutes after the start at 15km/h and steadily increased its speed until the last athletes were caught.The race was in aid of Wings for Life, a not-for-profit spinal cord research foundation with a mission to find a cure for spinal cord injury. While the cure is still to be found, steady progress has been made. All entry fees from the Wings for Life World Run go directly to the foundation and as a result of the 2015 race an impressive €4.2m was raised!The Australian edition of the Wings for Life World Run took place in Melbourne at Elwood Park where more than 3,000 runners braved the evening cold.

SpinChat presenter Rhiannon, who is an ambassador for the Wings for Life World Run, rolled an impressive 8km and Alice from our Marketing team managed just over 12.5km before the Catcher Car brought an end to their race. The global winner, Lemawork Ketema from Ethiopia, completed an astounding 79.9km in Austria.

Photo: David Callow

8 Inform | Spring 20158 Inform | Spring 2015

"I am a singer, husband and fanatical Saints supporter well before I’m a person with a disability.”


When Tim McCallum manoeuvred his wheelchair onto the stage of The Voice, it was the beginnings of a dream come true.His performance moved three of the four judges to turn around their chairs, and it was renowned artist Ricky Martin who fi nally persuaded Tim to join his team. Tim said it really was “like dreaming the impossible dream.”

“To see those chairs swing around was overwhelming,” recalls Tim. “I had such respect for all the judges and to have three competing to have me on their teams and work with me as a fellow musician, was the most moving moment of my career.”

Tim, who has performed for more than 25 years, is a talented performer with a voice that sends a chill down your spine. But there’s so much more to the amazing story that is Tim McCallum, than what you hear on stage.

Aged 18, Tim was well on his way to a successful musical career when he had an accident whilst diving which left him a quadriplegic. In addition to never being able to walk again, the doctors told him that he would never sing like he used to before the accident.

But Tim rose to the challenge. He undertook extensive rehabilitation which included changing his singing technique to compensate for his newly acquired physical limitations.

With the support of his devoted wife Mel, Tim

decided to audition for Channel Nine’s highly acclaimed program The Voice. And when those three judges' chairs turned, Tim said he was “ecstatic, relieved and humbled. It was quite overwhelming; the audience was incredible.” Tim went on to perform a second time on The Voice in The Voice Battles, and despite not winning the fi nal round against his own team mates, he was most gracious in defeat, noting that he saw this experience as a "stepping stone to greater things."Tim, who is an offi cial Ambassador for Independence Australia, is passionate about the need for people with a disability to receive the support they require so they can fully participate in every part of life they choose. He wants the community to see the person, not the disability.“My disability is only a part of what defi nes and describes me. I am many things. My disability is the most visually obvious, although I would tell you that my baldness is the most obvious. I am a singer, husband and fanatical Saints supporter well before I’m a person with a disability.”With that attitude and determination, it seems certain that Tim really can look ahead with confi dence and yes, dream the impossible dream.

DREAMING THE IMPOSSIBLE DREAM

Feature


Events

Accessibility Weekend2015

14-15 NovemberWheelchair users and their carers can visit Victoria’s top attractions for free. For the full list of participating attractions and to register for your FREE tickets check out the Accessibility Weekend website.

www.accessibilityweekend.com.au

Celebrating access and inclusion!

OCTOBER 2015

World Mental Health Day10 October 2015WorldwideMore info: www.who.int/mental_health/world-mental-health-day/2015

Polio Day (Polio Network Victoria)24 October 2015Springvale Town Hall, VictoriaMore info: www.independenceaustralia.com/polio

New World Conference: Disability in the 21st Century (NDIS)27 – 29 October 2015Brisbane Conference and Exhibition Centre, QueenslandMore info: www.ndis.gov.au/NDIS-new-world-conference-2015

NOVEMBER 2015

Spinal Cord Injury Awareness Week9 - 15 November 2015Australia wideMore info: www.sciaw.com.au

Accessibility Weekend (Independence Australia)14 – 15 November 2015Victoria wideMore info: www.accessibilityweekend.com.au

Out & About Family Fun Day (Villa Maria)29 November 2015Albert Park, MelbourneMore info: www.outandaboutday.com.au

DECEMBER 2015

International Day of People with a Disability3 December 2015WorldwideMore info: www.idpwd.com.au

Disability Sport & Recreation Festival3 December 2015Federation Square, MelbourneMore info: www.dsrf.org.au

What’s Out There (WOT) Day9 December 2015The Royal Talbot Rehabilitation Centre, MelbourneMore info: [email protected]


Health Tips

11 great tips for a healthier bladder

The most important fi rst step is to fi nd the cause, treat the problem. Make sure you see your GP or specialist to discuss how incontinence is affecting your day-to-day life. Together you can work to discover why that might be so and what you can do about it.But there are things you can also do every day by yourself to help keep your bladder healthy and minimise problems. Here our Urology and Continence Nurse gives us the skinny on 11 of their best tips:

1. Keep fi ghting fi t. The heavier you are, the more your weight presses on your pelvic fl oor and abdominal region. Eat lots of fi bre, fruits and vegetables and stay active and healthy to keep your bowels regular.

2. Drink at least 1.5 litres or 8 glasses of water per day unless your doctor says otherwise. This might seem counterproductive when you’re running to the bathroom so often. But reducing your fl uid intake can make things worse not better, as concentrated urine will irritate your bladder’s lining.

3. Decrease caffeine, alcohol and fi zzy drinks. These can stimulate your bladder, giving you the urge to go to the toilet more frequently to pass smaller amounts of urine. As in most things, moderation is the key.

4. Ditch the smokes. Smoker’s cough is bad enough without feeling like you need to go to the toilet every time you do it. Persistent coughing weakens your bladder, which can then cause bladder leakage.

5. Don’t strain when you go to the toilet. It can weaken your pelvic fl oor muscles and bladder leakage which leads us to the next point...

6. Flex your fl oors. Your pelvic fl oor muscles connect to your bladder via nerves, so training them to be stronger can help you control your bladder. It’s important to do your pelvic fl oor exercises 2 to 3 times per day for best results. Don’t know how? The Continence Foundation of Australia has some great how-to guides at www.continence.org.au.

7. Avoid foods that irritate your bladder. Some foods can irritate the bladder, causing you to go to the toilet more frequently. Watch out for chocolate (another source of caffeine), as well as spicy or acidic foods like tomatoes and citrus fruits.

8. Don’t hold back. Not emptying your bladder completely can cause infection. So don’t hold on, let it all go!

9. But don’t go “Just in case” either. Try to go to the toilet only when your bladder is full and you need to go. It’s a slippery slope: frequently visiting the toilet (“just in case”) can make your bladder more comfortable voiding lower volumes of urine – so you’re actually training it to go more often.

10. Take a walk. People with fl uid build up in their legs should elevate their legs or exercise daily to promote fl uid re-absorption back into the system. If walking’s a problem, an alternative is chair aerobics.

11. See your GP for a urine test if your urine smells offensive or if you are passing small frequent amounts of concentrated urine (dark in appearance). You may have a Urinary Tract infection (UTI).

Most people take bladder control for granted – until it’s gone. But if your bladder control could be better, it’s important to know you’re not alone. Roughly 33% of people aged 30 to 70 suffer from incontinence issues.

We understand that living with urinary incontinence is a very personal thing and that some of these tips may not be appropriate for your needs. By combining self-management strategies with specialist medical advice, you can individualise your approach to incontinence and feel more in control of your symptoms, so you can enjoy a full, active lifestyle.For more urology and continence related advice, please call 1300 788 855 or visit us online at www.independenceaustralia.com/ask-the-nurse. The advice is free to help you, or your loved one, manage the condition better.

1. Keep fi ghting fi t. The heavier you are, the 1

7. Avoid foods that irritate your bladder. Some foods 7

8. Don’t hold back. Not emptying your 8

9. But don’t go “Just in case” either. Try to go to the 9

10. Take a walk. People with fl uid build up in their

11. See your GP for a urine test if your urine

2. Drink at least 1.5 litres or 8 glasses of water 2

3. Decrease caffeine, alcohol and fi zzy drinks. 3

4. Ditch the smokes. Smoker’s cough is bad 4

5. Don’t strain when you go to the toilet. It can 5

6. Flex your fl oors. Your pelvic fl oor muscles connect 6

10

11


Psychology and Counselling

Want to reignite the spark in your relationship?Building effective relationships takes hard work.Even happy marriages are rarely, if ever, perfect. Indeed there can often be significant differences in temperament, interests and values between partners and/or close family members. Factor in a chronic illness or injury and there’s often a flow on effect to families and interpersonal relationships. Finding the right way to communicate is the key. If you’d like to start working on improving or strengthening your relationships, our new relationship workshops can help. Run over four half-days, the workshops can help you: • Build positive sentiments and feelings about each other• Override negative thoughts and feelings• Build optimism about each other and your relationship• Repair your connection when it breaks down and• Learn how to support each other’s goals and dreamsTo register your interest in attending, simply email [email protected]. We look forward to seeing you there.

Introducing JanaHello, my name is Jana Menssink and I’m a Provisional Health Psychologist currently in my second year of the Doctor of Psychology (Health) at Deakin University. In August I began a six month placement with Independence Australia.I have a keen interest in the connection between a person’s mental and physical health. When people experience physical health issues, such as chronic pain or chronic illness, it may affect multiple parts of their life, for example sleep, mood, relationships and confidence.As every person is unique I enjoy working in collaboration with individuals to identify what their specific goals are and what challenges they face.Additionally, I’m interested in working with people to help them improve aspects of their health and wellbeing. This may include focusing on issues such as stress,

low motivation, or changing health habits.Health habits refer to a wide range of behaviours such as exercise, diet, smoking, or sleep. These types of habits can be difficult to change, which is why people often seek support to achieve and maintain long-term changes.I also have experience working with a range of issues, including anxiety, depression, anger and low assertiveness. Assertiveness involves confidence in communicating and standing up for your rights. Some people find that they struggle with this in certain parts of life, such as when dealing with doctors, employers, or their family. If you’re interested in seeing me for one-on-one sessions, please call 03 9418 0480. Jana Menssink Provisional Health Psychologist



Living with a Disability

When I began my placement at Independence Australia as a Provisional Health Psychologist I was impressed by the number of health and wellbeing workshops on offer to clients.Health and wellbeing workshops are available across a range of topics and aim to support and empower people with a disability in areas such as improving sleep, relationships, changing habits and reducing pain.The importance of these topics became apparent when a number of people registered to participate in several, sometimes all, of the workshops on offer.To ensure participants didn’t need to make support arrangements for multiple workshops and travel any more than necessary, we put on our thinking caps. Soon after, the Living with a Disability workshop series was born.Living with a Disability streamlines key topics from other valued workshops and combines them into a five week holistic program. One workshop takes place each week and the series is free for eligible participants, lunch is also provided.The very first Living with a Disability workshop will take place later this year. If you would like to register your interest in attending please call 1300 704 456 or email [email protected] Seeger Provisional Health Psychologist

Disabling PainBeing told to live with your pain is not the end of the road...it's just the beginning.Pain is an unavoidable reality for many people with physical disabilities. Chronic pain can be debilitating, result in feelings of isolation, and have a devastating effect on your mood and quality of life. To better understand pain, and discover effective pain management strategies, members of Polio Network Victoria recently attended our Disabling Pain workshop.

Here’s what they had to say:

www.independenceaustralia.com

SELF-MANAGEMENT OF HEALTH AND WELLBEING WORKSHOP SERIES

independenceaust independenceaus

Being told to live with your pain is not the end of the road ...it’s just the beginning.

Pain is an unavoidable reality for many people with physical disabilities. Chronic pain can be debilitating; it can result in feelings of isolation, and have a devastating effect on your mood and quality of life. Our workshop provides you with a greater understanding of pain and effective pain management strategies. This group workshop will help you understand:

• The cause and nature of your pain• Your usual responses to pain• Conditions that increase or decrease pain• Techniques to better manage pain

The workshop will provide participants with a welcoming setting to share your experiences, knowledge and support with others who also live with chronic pain.

DISABLING

PAINSTART DATETo be advised.

DURATIONThree day workshop.

COSTFree

EXTRA INFORMATIONRefreshments provided. Clients will need to organise their own transport to sessions and a support worker, if required.

LOCATIONSCollingwood and regional locations as demand requires.

To register call 03 9418 0480 or email [email protected]

IA DisablingPainPosterA3 2015.indd 1 3/08/2015 1:43:51 PM

“I have been living on my own and I found that the workshop motivated me to be more positive in my daily life. I don’t wake up dreading each day anymore. I have started to use my sewing machine, which I had put away for many years, and I’m also doing my Yoga exercises again. I now sleep better and my pain level has dropped.”

“I was astounded by the new theories on chronic pain; simple things like mindfulness and relaxation can make life changing differences to our days. By practising a new way of thinking we can reduce chronic pain. Most of the group found subtle improvements over a period of weeks and I now have a much more positive outlook for a better quality future.”

“The Disabling Pain workshop has taught me a new way of thinking. Rather than fighting chronic pain there are ways of learning to live with it while lowering its impact.”

The free Disabling Pain workshops take place over three days and provide participants with a welcoming setting to share experiences and knowledge whilst supporting others who also live with chronic pain. To register your interest in attending please call 1300 704 456 or email [email protected].


Mental health and resilience

Research has recently been published by a collaborative that includes our very own Dr Andrew Sinclair, to better understand how depression, anxiety and stress affect Victorian adults with spinal cord injury over time.While the results showed that resilience in the spinal

community is common, there were also a signifi cant number of people who developed mood or anxiety disorders, which supports the importance of seeking professional help. Andrew and his colleagues are exploring online options for cognitive therapy to expand the range of treatment options available.To see the key fi ndings so far, please visit us online at www.independenceaustralia.com/services/psychology


Women’s wellbeing

Jana Menssink is surveying women on their experiences of unwanted sexual behaviour in public spaces, such as public transport, and in private spheres, such as workplaces.If you’d like to take part in the survey, please visit www.deakin.edu.au/psychology/research/jana_menssink. Upon completing the survey, participants can choose to enter a draw to win one of six $50 Coles-Myer gift vouchers.Even if women have not experienced any unwanted sexual behaviour they are still eligible to participate. The study is completely voluntary and anonymous.

We carry all the major brands and stock thousands of specialty products.SAVE time and SAVE money with Independence Australia!

Our friendly Customer Service Team is available: Monday to Friday 8am to 7pm Saturday 8am to 12pm (AEST)

1300 788 855 www.independenceaustralia.com

Mobility aids and equipment

Continence aids

Urologyproducts

Wound care

Daily living aids

Nutrition

We’ve got you covered for all your healthcare products!


polioperspectives19 ‘What Having Had Polio Causes,

Might Cause and Does Not Cause’16 Polio Day 2015 22 Introducing

our new logo

Health and wellness retreatIn May this year Polio Australia held its health and wellness retreat at Wyndham Resort, Torquay. The annual retreat aims to provide opportunities that will:• Renew the mind, body and spirit• Have post-polio questions answered by unhurried

medical experts• Spend custom-designed days enjoying recreational

activities• Learn more about how to stay strong and healthyOne of the attendees Bev Watson said, “What a great four days!

The program focussed on mind, body and spirit, and options were aplenty in each of the areas. I attended the ‘Take a Deep Breath’ session which covered problems to do with breathing and sleep. This interactive session with Anne Duncan discussed the availability of a range of aids to assist with sleep diffi culties. I followed up with a one-on-one discussion with Anne which was very helpful.The ‘Healthy Eating’ session was also positively interactive. Discussion centred on the barriers and limitations to healthy eating, as well as the right foods to eat and portion sizes.‘What’s Your Type’ explored the Myers-Briggs Type Indicator and how having an understanding of personality types can improve knowledge and appreciation of the

differences between people we meet.‘Pain Management’ with Steve de Graaff explored strategies for how to minimise the impact of pain and fatigue, whilst a ‘Yoga and Meditation’ workshop allowed us to explore our connections with the environment, ourselves and with one another.The four day retreat was a truly wonderful experience and I particularly enjoyed the company of so many there.”

WelcomeWith winter behind us, I’m hoping that you, like me, are looking forward to warmer days and more daylight.With my training wheels still on as Chair of the Polio Reference Group, I’m feeling very fortunate that I have group members who are all dedicated to their task as representatives for their Support Groups, and who are supporting me in my role.

Changes at Independence Australia saw Deanna Varney leaving in July, and David Maxwell continues to provide

information about Polio issues and support at our quarterly meetings.Read on next about our Polio Day on 24 October. It’s fast approaching and I encourage all who can make it to come and join in an informative and important social occasion. In closing, can I urge you to maintain your connections with your local support group and PRG representatives, because it is through you that we are able to continue to raise the matters that are important to us all.Bev Watson Chair, Polio Reference Group

Polio Day 2015 Booking Form

Personal details

1. Name

2. Name

3. Name

4. Name

5. Name

6. Name

7. Name

8. Name

Contact details

Address

Suburb Postcode

Contact phone

Contact mobile

Contact email

Dietary requirements

Ticket Details

I would like to book tickets for $25 each Total = $

I am unable to attend but would like to donate $25 to Polio Network Victoria (via Independence Australia).

Payment Details

Cheque Money order (Make payable to Independence Australia)

Visa MasterCard Amex Diners

Cardholder name

Card number Expiry /

Signature

Total ticket amountTotal ticket number

All fields are required. Return this form by Friday 9 October to Georgie Stayches, Fetching Events & Communications Suite 801, Level 8, 167–169 Queen Street, Melbourne, VIC 3000P 03 8600 9660 F 03 9640 0142 E [email protected]

Saturday 24 October, 10:30am to 3:30pm

Registration opens at 10am

Supper Room, Springvale Town Hall, 397–405 Springvale Road, Springvale

Join us at Polio Day 2015 on October 24, as we focus on how polio survivors

deal with change not only within themselves, but external forces impacting on them – such as State and Federal services providing care and equipment.Introduction of the NDIS, with accompanying changes to Aged Care Services, make it crucial for Polio Network Victoria and support group members to understand and assist each other in the new world of ‘client managed support packages’. Held at the Springvale Town Hall, Polio Day will give everyone a chance to hear about changes in the sector, how to adapt to changes within themselves, as well as ask questions of an expert panel and voice concerns. We are delighted to announce that Gabrielle Williams, Dandenong MP and Parliamentary Secretary for Volunteers and Carers (representing Disability Minister Martin Foley) will offi cially open the day.

The program will include a panel discussion, ‘Making Sense of Change’, which includes topics ranging from rehabilitation, aged care services and pain management, to changes in funding.Other insightful presentations include ‘Making Sense of Pain' by Dr Steve de Graaff, an update on the 2016 Australasia-Pacifi c Post-Polio Conference and ‘Polio: Life Stage Matters’, by Polio Australia.We will also be joined by special guest Afghani polio survivor Boman Ali Wakilzada, an artist and refugee now living in Geelong. His work will be on show and one of his paintings will be raffl ed as a fundraiser for the network.To cap off the day, there will be another popular access travel segment, plus lots of time to catch up with new and old friends over lunch and later over afternoon tea. Come along and be part of this annual day and learn how to make sense of change.

Team Polio 2015 – Making Sense of Change

Polio PerspectivesPolio Day 2015 Booking Form

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‘What Having Had Polio Causes, Might Cause and Does Not Cause’

We struggle daily with understanding whether what we’re feeling is down to the late effects of polio or not. So when we found this incredibly relevant article, we knew it was worth sharing in full. As it’s a very long article, we’re going to split it over two issues of Inform; part two will be included in our next edition. That said, if you can’t wait, we’ve uploaded the complete article to our website www.independenceaustralia.com/polio. Our thanks to Post-Polio Health International and Dr Marny K. Eulberg MD (Family Practice, Denver, Colorado) for permission to reprint.


Polio Perspectives

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As time has elapsed since the major poliomyelitis epidemics ended, following the widespread introduction of the polio vaccines, persons

affected by polio, their families and their healthcare providers seem to have less and less clear understanding about what symptoms are caused by polio, which are associated with polio and which are not. Many healthcare providers in practice today have had little experience or training in the care of polio survivors, and they studied the basic pathology that the poliovirus causes years ago.Organisations such as Post-Polio Health International, which exist to provide information to polio survivors, are frequently asked questions about various symptoms and the relationship to the acute polio. Post-polio groups and expert professionals have indicated that many individuals have been given incorrect or confusing information.Attributing symptoms or changes in functioning to one’s previous polio when the symptom is, in fact, due to a disease or condition that should be treated by an entirely different medical regime than polio/post-polio is not only not helpful but may be dangerous. Polio clinics can help with symptoms that are polio related and can help a person sort out what is and is not related to polio. The primary care physician can treat the non-polio related symptoms, and can

also manage polio-related symptoms with guidance from knowledgeable post-polio professionals.The intent of this article is to provide basic information about what the poliovirus does to the human body and to provide a general framework to guide patients, families and healthcare providers as they encounter new symptoms and try to understand them. Often a symptom can be caused by many different mechanisms and sometimes even by a combination of factors.This article is not meant to be all-inclusive and list every possible cause/disease but to discuss the most common and most frequent conditions. As polio survivors age, especially as they approach the second half of their lives, other medical issues can emerge that may make it difficult to determine exactly what is causing what. Polio survivors should inform their healthcare providers about their prior history of polio because it can directly or indirectly affect their current medical condition.What does the poliovirus do (pathology)?The diseases that were called “infantile paralysis,” acute poliomyelitis or acute polio encephalomyelitis, or simply “polio” were all caused by one of the three polioviruses (type 1, type 2 and type 3). The exact virus causing a person’s disease can now be identified in the laboratory but each of the viruses


Polio Perspectivescan cause a similar pattern of disease when they infect an individual. As used here, poliovirus or virus refers to one or more of the three polioviruses.The virus causes a flu-like illness with nausea, vomiting, diarrhoea, a fever and perhaps a headache and muscle aches, and, in a small percentage of individuals, varying degrees of paralysis. The majority of persons infected with the virus had only the flu-like illness, did not develop any paralysis and were thereafter immune to that virus.Less than 5 percent of all individuals that were infected with the virus developed paralysis of muscles ranging from a few muscles to nearly all the muscles of their body; some people died as a result of the infection. The virus circulates in the cerebrospinal fluid all around the brain and up and down the spinal cord. In the spinal cord, the virus attacked the anterior horn cells (the nerve cells that go out to the muscle and tell the muscle what to do) but did not affect the nerves that go back to the spinal cord with messages about touch, pain, temperature sensation or position sense (where the body part is in space, i.e. “is my foot on the floor or in midair? Or is my foot on a flat surface or a slanted surface?”)The poliovirus primarily affected nerves leading to voluntary muscles. Those are muscles that you can control with thought, such as, “I think I’ll point with my right index finger.” This may include the muscles involved in taking a deep breath, in swallowing, of the face, of the trunk and abdomen and the limbs. There

is lack of consensus among medical professionals about how much the poliovirus affected non-voluntary muscles such as those in the bladder or gastrointestinal tract. The poliovirus did not seem to cause permanent damage to the heart (cardiac) muscle.What symptoms/signs are likely related to polio (primary effects)?• Atrophy (muscle wasting). The ‘skinny arm’ or

‘skinny leg’ is a result of the muscle or part of the muscle not getting the message from the nerve that it should contract or move. Related to this is the possible shortening of the limb. In a growing child, bone grows as a result of the muscle pull on it and/or weight bearing. Therefore, many who contracted polio as a growing child may have one arm or leg or foot that is shorter and smaller than the non-affected/less affected limb.

• New weakness. In the more than 40 percent of polio survivors who develop post-polio syndrome, increasing muscle weakness in muscles previously affected or new weakness in muscles that were thought not to have been affected is one of the defining features of the condition.

• Loss/absence of reflexes at a joint. For example, when the healthcare provider hits your knee with the reflex hammer and it does not ‘kick’ out. But rarely, a polio survivor may have an exaggerated response or hyperactive reflex.


Polio Perspectives

Come to Polio Day 2015 for your chance to

win a painting by Afghani polio survivor

Boman Ali Wakilzada

• Muscular fatigue/decreased endurance. When a muscle does not have a full supply of ‘motor units’ it may still be able to function for a limited number of repetitions but it wears out sooner. The person may be able to sprint but could not run a mile and certainly not a marathon.

• Muscular pain. Polio survivors generally describe this as an achy, burning or sore feeling. It is thought to be due to overuse of the muscle(s) in the area. Individuals who had acute polio when they were old enough to remember the event say it feels similar to the muscle pain that occurred with the acute polio. Others describe it differently, but polio-related muscular pain is rarely sharp and stabbing.

• Biomechanical problems. These are problems related to abnormal positions of a limb around a joint, e.g. one leg being shorter than the other or abnormal curvature(s) of the spine. This can cause mechanical low back pain, increase the likelihood of wear and tear arthritis in a joint or a chronic tendonitis/bursitis or even nerve compression problems.

• ‘Polio cold’ leg or arm. There are several theories about what causes it, but it is real! Generally the person doesn’t perceive the limb as feeling as cold as it feels when it is touched. It occurs when the environment is cold – such as in winter or in an air-conditioned room. Unless the person has other reasons such as poor arterial circulation from diabetic vascular disease or severe hardening of the arteries that causes poor blood fl ow in the arteries, ‘polio cold’ leg or arm will not cause delayed healing of fractures or injuries. It is mostly an inconvenience to the individual and his/her bed partner.

• Some problems with breathing. These include decreased ability to move enough air in and out to get ample oxygen into the lungs or to exhale enough carbon dioxide due to new respiratory muscle weakness or from residual muscle weakness from the initial polio. Medically this is called restrictive lung disease. Problems include remembering to take a breath or to take enough breaths per minute. This is broadly called sleep apnoea (central apnoea). Paralysis of some muscles of the throat can also cause intermittent blockage of the air passages in the throat, which may also be termed sleep apnoea (obstructive).

• Certain problems with swallowing. These can cause choking while swallowing, especially thin liquids such as water, and sometimes some of the swallowed material will go into the lungs instead of down into the stomach causing a pneumonia known as aspiration pneumonia. Some people lose weight and have diffi culty maintaining adequate

nutrition because eating is so time consuming or diffi cult. Note: Many people over age 50 have other problems unrelated to polio that can cause problems swallowing. Various tests can determine the exact cause of the dysphagia.

• Osteoporosis/osteopenia. Weight bearing exercise is necessary for bone to become and remain strong. In persons who had paralytic polio the affected limb(s) may have bone that has less than the normal mineral (calcium) content. The terms osteoporosis and osteopenia refer to decreased amount of normal bone tissue; osteoporosis is more severe than osteopenia. These conditions can mean the bone is more brittle and may break more easily than normal bone. Generalised osteoporosis/osteopenia can also occur in certain medical conditions and with increasing age and is usually not related to polio.

In our next edition, part 2 of Eulberg’s article will explore what symptoms and signs may be related to polio (secondary effects).


Useful Information

Polio Australia03 9016 7678

Polio Services Victoria

03 9288 3900

Post Polio Victoria0431 702 137

Breakdown Service (RACV)131 111

Carers Australia1800 242 636

Centrelink (Disability)132 717

Centrelink (Aged)132 300

Commonwealth Respite & Carelink Centres1800 052 222

Council on the Ageing (COTA) 03 9654 4443

Disabled Motorists Australia03 9386 0413

Independent Living Centre03 9362 6111

Solve Disability Solutions03 9853 8655

State-wide Equipment Program1300 747 937

Polio Support Groups

BallaratWednesday (bi-monthly)Bayside (Hampton) First Tuesday (monthly)BairnsdaleBendigoSaturday (bi-monthly)EasternThird Saturday (monthly)GeelongFirst Monday (monthly)

EchucaHumeSecond Saturday (monthly)Knox-Yarra RangesSecond Tuesday (monthly)Mornington Peninsula Second Saturday (monthly)Northern (Coburg) First Saturday (monthly)Shepparton

South Eastern Second Saturday (monthly) TraralgonThursday (bi-monthly)WarrnamboolFourth Tuesday (monthly)

For more information regarding the groups, contact David Maxwell on 03 9418 0460.

Introducing our new logoIn July this year, The Polio Network Victoria committee approached Independence Australia with a desire to improve our image; breathe some new life into our logo and imagery and bring us into the 21st century, so to speak.After discussions with the Marketing team, they went to work with a brief that we hoped would return to us a new logo and some creative design elements that we could use in all our future communications.To say we are pleased with the results is an understatement. The committee is overjoyed with the results and we hope you fi nd them as fresh, professional and insightful as we do. The new logo which features a stylised map of a ‘networked Victoria’, aims to help us stand out in a busy world and brings additional visual interest to the artwork across all our stationery, banners etc. The primary orange colour remains with us, but has been given more light and life.At this point we’d like to personally thank Bridget, Independence Australia’s Senior Graphic Designer for her knowledge and expertise in developing our new distinctive marker.

Save the dateHosted by Polio Australia, the 2016 Australasia-Pacifi c Post-Polio Conference will be held in Sydney from 22 to 26 September.The aim of the Conference is to exchange knowledge about the diagnosis and treatment of the post-polio condition in different age groups to best preserve functioning throughout life. It will bring together health care providers, researchers, polio survivors, their caregivers and patient organisations' representatives not only from the Australasia-Pacifi c region but worldwide.For more information please visit www.polioaustralia.org.au.

Polio Perspectives

23Summer 2014 | Inform

Iron Wills – Victorian Polio Survivors’ storiesTold by Victorians struck down by the poliomyelitis virus, these stories describe how lives changed, mostly in early childhood, from diagnosis, to treatment, school, work, and to the dreadful discovery that worse was yet to come: the late effects of polio.Their accounts reveal often painful and funny, highly personal, aspects of the epidemics. How families managed the often tough treatment meted out, also many wonderful ongoing relationships with physiotherapists, nurses and doctors.Then comes the bombshell: how could there be a comeback? It took years to convince the medical profession and even family members that Post Polio Syndrome was a reality. But through the fraternity of survivors through support groups, our own research and self-management has been the salve.Illustrated by photographs from family albums, as well as historical pictures, the aim is to validate the journey, to provide a unique record for others to learn from, before it’s too late.

Polio Network Victoria

Victorian Polio Survivors’ StoriesIron WillsA unique account of epidemic and aftermath

Iron Wills – Victorian Polio Survivors’ Stories

A unique account of epidemic and afterm

ath

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Polio Cookbook $15 each Order Quantity

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The Polio Day Cookbook Fine food for the fatigued! Buy your copy today for only $15.

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