MS Life Autumn 2015

MSLIFE. AUTUMN 2015

MS QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

Rachel’s MS journey:

Living each day to the full Resources for

carers, partners

and familIES Helping you and your loved ones understand MS

pg. 6

pg. 9

What to expect from One year until your neurologist the NDIS

pg. 10

pg. 16

Service in focus: RSCs

Time to renew your membership

FROM THE EDITORS Dear readers, Well we are a quarter of the way through the year already!

There are so many exciting activities happening at MS Queensland – from our special 25th anniversary Enerflex MS Brissie to the Bay bike ride on Sunday 21 June, to regional MS Swimathons and this year’s World MS Day on Wednesday 27 May. World MS Day marks a global effort between people affected by MS to raise awareness and create community change and action around “access” for people living with multiple sclerosis (see page 5).

Sadly, this edition of MS Life will be Melanie's last as she leaves MS Queensland to take on a new opportunity. We wish her all the best and thank her for the transformation of our magazine over the past four years.

As always, if you have any feedback about MS Life or have a story idea please get in touch by emailing us at mslife@msqld.org.au Melanie and Cassie Editors, MS Life

ceo e h t m o r f Hello and welcome to 2015! I hope everyone has settled in well to the New Year. It has been an exciting start already and we’re about to approach our busiest time with many new and inspiring projects to help support people living with MS. Excitingly we are just three months out from the biggest fundraising event in our 57 year history and preparations are tracking well for the special 25th anniversary of our Enerflex MS Brissie to the Bay bike ride. In recognition of our 25th year we launched the event early with a special $25, one day only, registration price and more than 7,000 riders signed up (see page 15 for more details).

I’m looking forward to jumping on the bike again in June but as I write this, I’m reminded that I have just 11 weeks to train and prepare for the new and improved 100km course… I'd better get cracking!

Another initiative that’s getting me excited is our new In-Home Support service being piloted in the Ipswich and Brisbane regions. While we know there are many other in-home services out there, this is something we’re very passionate about and have been working towards for a long time. Our point of difference is that our service is designed around you being able to live your life, you way (read more on page 5). I hope you and your family will consider taking up this new service.

As you read this edition full of exciting new projects and services, just know that the team at MS Queensland are giving their all to help people living with MS to get the best out of life and to make our vision of a world free from MS and its devastating impact a reality.

Best wishes,

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Lincoln, CEO Acknowledgement: We wish to thank Rachel Kerr for the use of her image on the cover of this publication. Photo courtesy of Jason Henry, ‘Welcome to the Fold’ Photography.

If you have a MS-related question to ask Tim, our Manager of Specialist Education, please email Tim at mslife@msqld.org.au

MS can have a significant impact on the lives of family members and friends of a person living with MS. Every day we are reminded that the phrase “people living with MS” also includes a person’s carer, partner, family and friends and we want you to know we’re here for you too.

We regularly receive letters from carers and partners of people living with MS; sharing their stories and reminding us that families and friends are also affected by the condition. We know that it’s often people’s loved ones and partners who take on the role of the carer, and that knowing how to access support, services and advice can help you to manage the many changes MS may bring. For this reason, this edition of MS Life includes some great resources and information (see page 19) to help you manage and better understand what a person living with MS may experience.

Connect online

PAGE 2–3 From the Editors From the CEO Does your friend or family member have MS? PAGE 4–5 MS fundraisers in the community World MS Day is nearly here New In-Home Support Pilot PAGE 6–7

What to expect from your neurologist

PAGE 8–9 Warm up your winter and go red for MS

Our new Queensland Government One year until NDIS is here, are you ready?

PAGE 10–11 Toowoomba 'Healthy Steps' exercise group Service in Focus: Regional Service Coordinators PAGE 12–13 Rachel's MS journey

If you’d like to stay in touch with MS Queensland’s activities, events and physiotherapy programs please visit our:

www.msqld.org.au

www.twitter.com/msqld

www.facebook.com/msqld

www.youtube.com/user/ MSAustraliaQ

To make a donation to MS Queensland or for more information on what we do please email mslife@msqld.org.au or call 07 3840 0888 or visit www.msqld.org.au

PAGE 14–15 Supporting the MS cause

How Cindy lives positively with MS PAGE 16–17 MS and your quality of life Membership Clients have their say MS support group update PAGE 18–19 A day in the life of a MS Support Worker Questions with Tim Resources for careers PAGE 20 2015 Calendar of Events

MS LIFE – AUTUMN 2015

Does your family member or friend have MS?

Want a MS question answered?

CONTENTS

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s r e s i a r MS fund

Are you considering fundraising for MS Queensland but don’t know where to start? The efforts of Oakey woman Dianne Priddle is proof that almost anything can be turned into a fundraising event.

in the community For the second year running, stud owner Dianne who was diagnosed with MS in 2001, has donated the proceeds from the auction of one of her steers to MS Queensland. She donated $1,080 to us last year and true to her word and backed by stronger market prices, she topped that price this year with the sale of steer ‘Berwick’ for $1,319 (pictured above).

Dianne and her partner David have also arranged for one of David’s colleagues to donate the proceeds from the sale of one his of steers to MS Queensland later this year.

Stepping her fundraising up a notch, in addition to the full proceeds from the sale of her steer, she has also approached local businesses asking if they would be interested in matching the $1,319 already raised.

If you’d like to fundraise for us in your community please contact our Community Fundraising Coordinator Clancy Feuerriegel on 07 3840 0887 or email events@msqld.org.au

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Dianne says “if everybody just gave a little, whether it’s an animal, whether it’s time, or whatever, if we all just gave a little, we can all only benefit from it.”

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World MS Day is nearly here More than 2.5 million people are living with MS globally.

World MS Day launched six years ago by the MS International Federation (MSIF) and is held on the last Wednesday of May to raise global awareness of MS and to strengthen the network of people living with MS. This year, on Wednesday 27 May, we’ll celebrate World MS Day by focusing on ‘access’ – continuing to educate and inform people across the world about the different types of access issues faced by people living with MS including treatments and services, housing, employment, mobility and leisure.

Read more about World MS Day and how you can get involved at www.worldmsday.org

Introducing our

In-Home Support PILOT

Over the Christmas period, teams from across MS Queensland were busy laying the foundations for an exciting new service we launched in March – an In-Home Support pilot for people living in the Brisbane and Ipswich areas.

This new In-Home Support service is available not just for adults living with MS, but all adults in Brisbane and Ipswich who are living with a neurological condition – including MS, Alzheimer’s, Epilepsy, Friedreich’s Ataxia, Huntington’s, Motor Neurone Disease, Muscular Dystrophy and Parkinson’s. People who require support and do not have a chronic neurological condition (e.g. have had a stroke) will also be considered under the pilot, on a case-by-case basis.

You do not need to be a registered client of MS Queensland to take advantage of this new service.

Under the pilot, In-Home Support will be offered seven days a week, generally between the hours or

6am and 10pm each day. Our approach is very flexible and we will work around your lifestyle to make sure you are living Your Life. Your Way. We’re offering a range of support, both in-home and in your community, including: • personal support; • assistance with appointments; • social outings; • domestic assistance; and • assistance with medication.

MS LIFE – AUTUMN 2015

Available for Brisbane and Ipswich areas

Spaces in the pilot are limited and made on a first come, first service basis.

To enquire or find out more about our in-home approach, please call us on 07 3840 0859 or drop us an email to inhomesupport@ msqld.org.au

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What to expect from your

neurologist Written by guest contributor and MS Clinic Nurse, Kaye Hooper

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The first time you see the neurologist The first appointment with your neurologist can be lengthy. The neurologist needs time to ask you about your medical history, carry out a neurological examination, view your MRI results and focus on any possible past neurological events. Before you go to your first appointment, note down any questions you may have and during the consultation, ask for clarification if you don’t understand what is being said. Many people find that having a family member attend the appointment with them can be helpful. Together with the neurologist, you can then make decisions about your medical care.

Diagnosing your MS As most people with MS already know, getting a diagnosis of MS is not simple – there is more to it than just having a blood test or scan. An MS diagnosis is made by a neurologist who takes into consideration a number of things including: your clinical neurological history (what has happened over the past years and is currently occurring), conducting a thorough neurological examination (a physical examination where sensory and motor responses and other investigations are checked out), having a good look at your MRI scan and also excluding other conditions that may have a similar presentation. There is international criteria for diagnosing MS which is used worldwide by MS neurologist experts to diagnose the condition.

Prescribing treatments for your MS Neurologists recommend treatment choices tailored to the individual patient. Long term treatments for relapsing remitting MS are available and generally offered to suitable patients.

Treatment for relapses may be suggested (usually intravenous steroids) if suitable, and treatments for symptoms of MS may also be given or referrals made to other specialists.

Managing and monitoring your MS While medications are important there are other things that can be done. Your neurologist may suggest management strategies including: managing fatigue which can have a major impact on daily life, reducing stress, exercise and eating well and workplace adjustments – these and other strategies can be discussed with your neurologist, MS nurse or GP. MS Queensland also offers a number of valuable resources for managing MS symptoms (please call our InfoLine on 1800 177 591 or visit www.msqld.org.au for more information).

Ongoing reviews with a neurologist

Multidisciplinary MS healthcare team Your neurologist is part of a team of healthcare professionals who are there to help you manage MS – your GP and your MS Nurse are also good sources of advice. Depending on your specific MS symptoms, your GP and specialists (e.g. urologist, pain specialist, rehabilitation doctors, occupational therapist, physiotherapist and many others) may also be part of your MS healthcare team.

We hope this answers some of your questions surrounding what to expect from your neurologist. If you have any other questions about MS please call our InfoLine on 1800 177 591 or email info@msqld.org.au

MS LIFE – AUTUMN 2015

Most neurologists will review patients every six or 12 months (or sometimes every two years).

It really depends on the ups and downs you experience with your MS. Each review will assess your MS, review your medication and address any issues that are concerning you. Neurologist appointments will be more frequent when you are being diagnosed and also when there are relapses or worsening of your MS. Call for an urgent appointment if you are concerned.

When things settle and life gets a bit more on an even keel you may not need to see the neurologist again for quite a while.

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Warm Up your winter and go red FOR MS!

The annual Kiss Goodbye to MS campaign kicks off again next month and this year MS Research Australia is aiming to raise $1million to help fund vital research into the cause and cure of MS.

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If you would like to make MS a thing of the past and Kiss Goodbye to MS, simply head to www.KissGoodbyetoMS.org or call 07 3840 0887 to register as a fundraiser or to make a donation.

This year's national campaign calls on fundraisers to wear, dare or share: • get sponsored to WEAR red lipstick (or anything red!); • get sponsored to do a Kiss Goodbye to MS DARE (perhaps a skydive, a bungee jump or an Ironman race); or • SHARE by holding a Kiss Goodbye to MS fundraising event (from a morning tea to a major community event, you can make a difference!).

Last year, a team of 20 people walked the breadth of England and raised over $223,000 for MS! Some fantastic jet skiers also traversed the Bass Strait from Tasmania to Victoria and back again raising over $6,000.

From community walks to fundraising dinners, the sky is the limit as to what you can do to Kiss Goodbye to MS!

The snap Queensland election held on 31 January brought a flurry of activity and surprise across Queensland. As we know ripples of the Queensland election were also felt federally with both the State members and the Federal Government announcing they will consult more with the community.

What do you want from your elected members of Government?

Now is a great time of reform for our sector and, consequently, a period of big change for our Government. At this time of development of the new State Government and renewed focus for the Federal Government, it is up to us to contact our elected members to let them know what is important to you and how they can help. What are the issues that you think Government could do more to help with? Some issues that particularly affect our community that you may like to discuss are: • cost of living pressures – including the cost and impact of energy use; • the full implementation of the NDIS – when will the NDIS be launched in your part of Queensland?; and • employment – particularly work retention strategies for people living with MS. This list isn’t exhaustive and should be tailored to you. The Government wants to be more consultative so contact them to let them know how they can help you.

If you have any questions or would like assistance regarding contacting your member of Government please contact me on 07 3840 0823 or email natalie.walsh@msqld.org.au Natalie, Advocacy Manager

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here is S I D N the eady? are you r

The countdown is well and truly on until the National Disability Insurance Scheme (NDIS) rolls out in Queensland in July 2016. There are excellent sources of information to help you be prepared for the NDIS available at www.qld.gov.au/disability/adults/readyfor-ndis/, www.everyaustraliancounts.com.au and www.ndis.gov.au Here you’ll also be able to find participant readiness programs where you live and read real stories of people in other States who have already accessed the scheme. As we know, the NDIS will bring great change to people’s lives. Inspired by Libby Ellis, who is an advocate for her brother and other families navigating the new system, here are three tips on making choices and addressing barriers to change.

1.

Don’t approach the NDIS with low expectations.

Trust in the scheme and gaining information are essential elements of taking control under the NDIS. The first question people will be asked when they meet with an NDIS planner is “What are your goals and aspirations?”

2.

Initially look at services that you know and feel safe working with. It could help to gain confidence in taking more risks as you become familiar with the new scheme.

3.

Imagine better. Give time to think about what you want, not what others might get or what hasn’t or isn’t working. Imagine better with the NDIS, you don’t know what you might find.

If you have any questions or would like assistance regarding the NDIS please contact me on 07 3840 0823 or email natalie.walsh@msqld.org.au

MS LIFE – AUTUMN 2015

Our new Queensland Government

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‘Healthy Revamped Toowoomba

N I E C I SERV

Steps exercise group

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Our Regional Service Coordinators (RSCs) are the first point of call for all newly registered clients. The needs of people living with MS vary and so does the role of the RSC. They work collaboratively with our clients, health and community providers to get the best support possible based on the client’s current needs. Here’s an example of how one of our RSCs Tasman Saywell (Sunshine Coast region) assisted a client with appropriate supported living arrangements.

In 2006, in response to client feedback, we introduced the ‘Healthy Steps’ exercise group in Toowoomba in partnership with The Works gym at The University of the Southern Queensland. Initially, our involvement was to provide onsite staff education and an exercise program for the gym to run. A swiss ball based, core stability program was set up and MS Queensland physiotherapists visited the gym as they were needed.

Last year, we reviewed our physiotherapy delivery model and reaffirmed our commitment to formally partner with community organisations to develop ongoing exercise options and to extend the reach of our MS specialist knowledge across Queensland.

Research indicates that exercise can improve the health and wellbeing of people living with MS, but that they also have increased barriers to achieving the recommended levels of exercise than others without MS.

For more information on this program please contact Linda Wilson-Marks from our Physiotherapy Department on 07 3840 0841 or visit www.msqld.org.au

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Note: please check with a healthcare professional before commencing any new exercise or movements that your body is not familiar with.

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The revamped ‘Healthy Steps’ program is now based on the ‘Step-by-Step’ circuit exercise program and that we have set up in gyms in Victoria Point and Beenleigh. Group participants are assessed by one of our physiotherapists and taught a set of individualised exercises based on their performance.

Our commitment to this program will see one of our physiotherapists visit the site twice a year to monitor client progress and to support the gym staff in the delivery of this program.

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In mid-2010, with no other option than to stay in hospital, Glenda reluctantly took a place at a residential aged care facility. But she wasn’t comfortable or happy nor did she or her family feel it was an appropriate longterm solution.

Glenda and her family contacted MS Queensland and, with the support of her RSC Tasman, they advocated for change and a better long term solution for Glenda’s living arrangements. Over three years Tasman worked to ensure the Department of Communities’ Disability Services had the information they needed for Glenda to be prioritised should community-based, age appropriate accommodation become available. He worked

FOR SALE

alongside the family, the aged care facility, and other stakeholders to ensure Glenda’s needs would be met with the resources available.

Finally, in late 2013, Glenda was offered placement with a suitable supported accommodation service in North Brisbane, meaning that she was able to leave the aged care facility. With MS Queensland’s continued support and advocacy, Glenda was later offered the opportunity to move into supported accommodation in Mooloolaba, meaning the move back to her beloved family on the Sunshine Coast. Tasman once again assisted Glenda and her family with the arrangements and equipment required in order to make the smooth transition ‘home.’

Glenda is living positively in her home and is grateful for the opportunity of a better life.

For more information on the support a local Regional Service Coordinator can give you, please contact our InfoLine on 1800 177 591 or visit www.msqld.org.au

AGNES WATERS

$229,000

193 Maude Hill Road Deepwater QLD 4674 A supporter of MS Queensland has generously left their property at Agnes Waters to us in their Will.

The proceeds from the sale of this property will help our plans to build more age-appropriate accommodation for people with MS. REMAX 0439 356 272 Sue Robertson

Property details: www.realestate.com.au/ property-lifestyle-qld-deepwater-7718495

MS LIFE – AUTUMN 2015

Glenda Tonkin was diagnosed with MS over 20 years ago. Her progression in more recent years has seen her become reliant on a wheelchair and other people for care and support. Up until this stage Glenda was living at home with her husband of 33 years, Dennis, however she struggled to get the level of support she needed to remain living at home safely.

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Rachel’s

MS journey

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“I truly believe we will find a cure for MS in this lifetime – I look forward to my children hearing about MS and being able to say it's something their mum used to have.”

Today, living in Rockhampton with her husband Shannon, two year old son Tate and another baby on the way, Rachel is one of the most determined, dedicated and infectiously positive young women we’ve ever met.

Whilst facing life with MS seemed daunting at first, Rachel embraced her new challenge and is now helping others to live positively with the condition. She became a MS Queensland Young Ambassador three years ago, got married and gave birth to a beautiful baby boy and has actively involved herself in our fundraising events including the local MS Swimathon in Rockhampton.

For Rachel “being a MS Ambassador is very important to me as I feel Central Queensland needs to know more about the effects of MS. It also allows me to present specific regional needs for the Rockhampton area back to MS Queensland to enable service improvements.”

Over the past three years Rachel has also played a crucial role helping us establish the 12 hour Rockhampton MS Swimathon.

Our MS Swimathon program is one of Queensland’s fastest-growing charity events and was introduced to Rockhampton for the first time in 2013.

She has become our ‘on the ground’ contact and in its first year was the swim’s highest fundraiser, raising more than $2,400. Rachel said “the first MS Swimathon was a really exciting event for Rockhampton and funds raised from the swim were solely dedicated to assist people with MS in our region.”

“MS Queensland offers people living with MS a wealth of knowledge and services and it’s great to know they offer options for anyone, at any age, to help raise those much needed funds we need to keep going.”

“For me MS is a constant struggle between what I would like to do and what I am able to do. It presents new challenges every day and MS Queensland is actively working in communities to help people like me overcome these hurdles.”

To find out more about our fundraising events and how you can get involved please contact our events team on 07 3840 0828 or events@msqld.org.au or for a full list of the services we offer please visit our website www.msqld.org.au

MS LIFE – AUTUMN 2015

Beyond this 26 year old's bubbly personality and positive outlook on life you would never know that nine years ago, right before graduating from high school, Rachel Kerr mysteriously lost her eyesight (temporarily) before being told that she had MS.

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E S CAU MS THE G SUPPORTIN The start of this year has seen the MS Swimathon season hit ONS h AT full speed with four swims already held in Queensland. Many of MS SWIM our highest fundraisers and committed team captains are either living with MS or have a relative or friend living NTO PLUNGE I with MS. One of these lovely people is Lynda D Erwin from Mackay (pictured below).

N E THE DEEP

Lynda was only diagnosed with MS in 2013, but admits that her symptoms had been coming and going for years. “Looking back, I have probably had indicators since my late teens - but because I lived in regional Queensland, by the time tests were done in the city I was better and tests always came back inconclusive.” MS has affected Lynda’s life quite severely, “I can’t ride horses anymore as my balance is no good and I can no longer work due to my memory and lack of concentration.”

Despite this, Lynda has participated in the last two Mackay MS Swimathons and has been an excellent fundraiser, raising thousands of dollars to ensure quality care continues for people in a similar situation to her.

“MS Queensland has been my sanity. The information that I’ve been able to share with my family is better than I could put into words. Swimming is something I can still do and enjoy – I want to help others and I want to see a cure for this often silent disease.”

If you’ve never swum in our events we’d love to hear from you. Call 07 3840 0887 to register your interest and find out when the next swim in your region will be held. If you live in Townsville it’s not too late to register for the Sunday 3 May event – to register and take advantage of early bird discounts, visit www.MSswimathon.com.au

Ideas move more

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SErvO POwEr ASSiST

Up to 55km range, SWL 150kg, 2 programmes – 10 levels, airport mode, no stud axles, includes remote.

✔ support cardiovascular functions ✔ warm legs with less or no pain ✔ ease spasms increase mobility

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Passive/active exercise. Assist in your own rehab.

PHONE 1800 994 408 www.abilityinmotion.com.au

admin@abilityinmotion.com.au

This year we’re celebrating the special 25th anniversary of the Enerflex MS Brissie to the Bay bike ride and we’re already breaking records. More than 7,000 participants have registered and committed to fundraising for us. This means we’re well on our way towards achieving our fundraising goal, but we still need your help. This year we want to raise an incredible $1.6 million to help continue to fund and expand our services for our clients across Queensland.

how cindy LIVes positively with ms

There’s a distance for everyone with the 10km, 25km, 50km courses and a new 100km route, plus this year we’re also introducing a new ‘Corporate Challenge’ for organisations. If you’re interested in getting involved and haven’t yet registered, jump online and take advantage of early bird discounts at www.BrissietotheBay.com.au

"I've been reading some inspiring stories of other people living positively with MS and it made me realise that I've been positive about my MS without really knowing it. I think emotionally, a diagnosis of MS is quite heavy on the mind and on the heart, and places questions over our identity – the feeling of being defined by this disease.

Cycling not your thing? There are many ways you can help us – by volunteering (pre-event OR on the day) or by joining us at the finish line to cheer riders on as they come across the finish line. Either way, you’ll be helping the ride to fight MS. For more information on the ride please call us on 07 3840 0828.

I am 32 years old and I was diagnosed two years ago. It was definitely an impacting time in my life – six weeks later my son was diagnosed with autism.

Whilst the autism diagnosis was something that would need constant work and attention, I felt the MS diagnosis I just couldn't do anything about. No cure, gruelling treatment options, and so unpredictable, how would I ever know if I would be strong enough as my son grows, to meet his needs? This is still something I think about every day.

I eat a healthy diet, keep an active mind, and try to get lots of rest.

MS Moonlight Walk save the date: 23 OCT 15 We've locked in this year’s MS Moonlight Walk date which will be held on Friday 23 October at Southbank. We’re excited about 2015 being a year of records, and like our MS Brissie to the Bay, we’re hoping to raise more than ever before! Register your interest today at www.MoonlightWalk.com.au and be the first to know when our discounted entry opens!

But I soon realised that there is so much I can do to help my body cope with having MS – try different treatments and find one that fits with our lifestyle, stop wrapping myself in cotton wool and do more than you think you can, push one step further! I eat a healthy diet, keep an active mind, and try to get lots of rest. I can do so much more than I ever thought I could – more than I did before I was diagnosed!

My motto is to push one step further, do everything, because there may come a time when you can't. So get your gym clothes on, take one more step than you did yesterday, push a little harder and live a little more each day, you'll be amazed at what you can achieve!"

If you have a living positively with MS story that you’d like to share please email us at mslife@msqld.org.au

MS LIFE – AUTUMN 2015

– cindy

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e f i l f o y t i l a qu

MS and your

‘Quality of life’ is the general wellbeing of a person within our society. It has a wide range of contexts in the fields of international development, healthcare, politics and employment and should not be confused with the concept of ‘standard of living’ which is based primarily on income.

Instead, indicators of ‘quality of life’ include not only wealth and employment, but also the built environment, physical and mental health, education, recreation and leisure time, relationships and social belonging.

As part of our commitment to be the first choice for MS information, education, treatment, care and support across Queensland we have launched a new assessment tool that measures a person’s quality of life.

This enables us to regularly monitor peoples’ wellbeing over time, at key periods in their MS journey, and to review the effectiveness of our services. Developed by the Centre for Health Economics at Monash University, the particular Quality of Life tool we have chosen (called the ‘AQoL-8D’) is widely used in the UK, USA, Canada, Trinidad, Philippines, China, Malaysia, the Netherlands and Australia.

This is an exciting new development and a first for our organisation. Our Services staff will be using the new Quality of Life tool as an extra measure of a person’s needs – this will assist us in providing services that can make a quantifiable positive difference in their lives.

Depending on where you are in your MS journey, you may be asked to complete this assessment in the future, which is voluntary. The assessment itself takes no more than five minutes each time to complete and helps us better assess and understand your needs – including independent living, happiness, mental health, coping, relationships, self-worth, pain and senses. It includes questions like ‘How content are you with your life?’ and ‘How does pain interfere with your usual activities?’

Assessing your quality of life over time will help us better direct our services, and ensure our services are having a positive impact in your life. It will also give us robust evidence and feedback from our clients to continuously improve our service delivery to people living with MS. So please take the opportunity to tell us about your needs and how we can best help you maintain and improve your quality of life.

For more information on the Quality of Life tool, please contact your Regional Service Coordinator directly or our InfoLine on 1800 177 591 or info@msqld.org.au

ARE YOU A MEMBER?

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WHY NOT JOIN TODAY!

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Are you a member of MS Queensland? Join today for just $33 a year which helps us provide more information and education about MS and leading MS research. To become a member or renew your annual membership for the 2015-16 financial year simply fill out the membership form with this MS Life or contact us at mssociety@msqld.org.au or call 07 3840 0888.

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Since the launch of our Gold Coast office midlast year, there has been a 15% increase in new client registrations in the region. To ascertain the changing needs of people living with MS and to help deliver the most appropriate services, we recently surveyed clients living in the Logan and Gold Coast region. For the first time we asked about the information and support needs of family and carers of those living with MS. The survey showed that: • 95% of clients know the role of their RSC Sharyn Shields and who to contact if they need support; • clients were most interested in MS information on exercise and physiotherapy, chronic disease self-management, fatigue and cognition and memory; • more than 60% said they would attend an MS information session if it was held in their local area; and • 35% said their family and friends needed individualised information around MS. Based on this feedback we are planning to deliver a range of information sessions and workshops on the Gold Coast in 2015 in addition to MS Webinars on fatigue, cognition, superannuation and insurance.

LIFE

Queensland

LIFE

Autumn Edition

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MSLIFE. MS Life AUTUMN 2012

QUEENSLAND Giving life back

Volume 3 Spring Edition, September

QUEENSLAND’S

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IN THIS ISSUE...

Services

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CEO’s Message Catherine’s Story Our New Website Life at Annerley Feature Articles Update MS Readathon 30th Birthday Fatigue Research MS Services

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LIFE

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Working with MS Workshops

AND MS

MS AWARENESS

See how Queensland took part in World MS Day celebrations this year

pg.

15 One man’s struggle Living Positively against the odds with MS

LIFE

– QLD

Autumn 2010

Lynette Walks

Employment Power

A MISSION

mum won’t let

pg. 8

Nominate your MS Hero

MS Australia

WEEK

MS AND SES

Read about the lip smacking campaign that had everyone talking about MS

Giving life back

Multiple Sclerosis Society of Queensland 286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151

Spring Edition

THE BAY

McKINNON

how you can

Jonathan Loraine

take part

and Bruce Milligan

Summer Edition

LIFE

– QLD

Giving life back

MS Life Spring 2010

ORAL TREATMENT JOINS PBS

TREVOR FARRELL: GIVING LIFE BACK

Gilenya® is the first oral treatment for relapsing remitting MS to become available on the PBS

Meet one of the most inspiring people living with MS in Queensland, Mayor of Ipswich Paul Pisasale

LIFE

Winter Edition

A YEAR OF EMPLOYMENT AND MS

Giving life back

Giving back independence

BOB AND KAREN’S

2009

MS Life

QUEENSLAND

Summer 2011

WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE

LOVE STORY

MS Australia

GIVING LIFE

BACK

FOR THE CAUSE

The ambitious program to provide integrated and dignified care

Ms Penelope Wensley

Lisa’s motherhood story of and MS

KID

2009

LET’S CRUISE

A look at new oral for MS that offer treatments more options

MOONLIGHT

Helen Emery takes on the high seas in style with husband Graham

WALK

Over 1300 people through Brisbane take a stroll to raise money for MS

A GLOBAL MOVEMENT How the world united with a common goal: to raise awareness of MS

P3

COOLING REBATE P5 State Government a new electricity introduces rebate for low-income Queenslanders with multiple sclerosis

FEATURE STORY P10 Debbie Smart was diagnosed with MS, but it didn’t stop her from moving to Africa to help vulnerable children

MSLIFE. MS Life AUTUMN 2012

QUEENSLAND’S

PREMIER MAGAZINE

MS

FOR PEOPLE

LIVING WITH

A new framework and strengthen to expand the MS support group network

MS Australia

RESEARCH

NEWS

CEO’s Message Catherine’s Story Our New Website Life at Annerley Feature Articles Update MS Readathon 30th Birthday Fatigue Research MS Services

2 3 3 4 6 8 9 10

Winter 2011

MS Australia

Multiple Sclerosis Society of Queensland 286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151 ABN 56 731 473 412

AND MS

MS AWARENESS

See how Queensland took part in World MS Day celebrations this year

pg.

Autumn 2010

WEEK

MS AND SES

Read about the lip smacking campaign that had everyone talking about MS

Summer edition

Giving life back

2009

Multiple Sclerosis Society of Queensland 286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151 ABN 56 731 473 412

Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld

how you can

take part

and Bruce Milligan

Summer Edition

LIFE

CEO’s Desk 2 Life Options 3 Ian’s Story 4 In Memory of John 5 Reading for the Family 6 Storming Parliament 8 Events Research Breakthrough 9 10 MS Book Reviews 12

TREVOR FARRELL: GIVING LIFE BACK

Gilenya® is the first oral treatment for relapsing remitting MS to become available on the PBS

TREVOR FARRELL: GIVING LIFE BACK We celebrate the era as Executive end of an Director Trevor Farrell prepares to retire after nearly 30 years

Giving back independence

Winter Edition

2009

QUEENSLAND

Giving back independence

and dignity

BOB AND KAREN’S

2009

MS Life Summer 2011

MS Life

QUEENSLAND

BOB AND KAREN’S

MS Life Summer 2011

Spring 2010

MS Australia

– QLD

BACK

FOR THE CAUSE Meet the Queenslanders supporting MS research and regional services

PwMSQ A new framework and strengthen to expand the MS support group network

MS Australia

LET’S CRUISE MOONLIGHT

Helen Emery takes on the high seas in style with husband Graham

WALK

Over 1300 people through Brisbane take a stroll to raise money for MS

A GLOBAL MOVEMENT How the world united with a common goal: to raise awareness of MS

AUTUMN 2012

QUEENSLAND’S

PREMIER MAGAZINE

FOR PEOPLE

LIVING WITH

P3

COOLING REBATE P5 State Government a new electricity introduces rebate for low-income Queenslanders with multiple sclerosis

pg. 8

MS hold her back EMPLOYMENT

pg. 12

Working with MS Workshops

AND MS

MS AWARENESS

See how Queensland took part in World MS Day celebrations this year

pg.

15 One man’s struggle Living Positively against the odds with MS

LIFE

Autumn 2010

WEEK

MS AND SES

Read about the lip smacking campaign that had everyone talking about MS

PwMS Josie Montano during Queensland’s helps floods and cyclones

PwMSQ

A new framework and strengthen to expand the MS support group network

MS Australia

– QLD

MOONLIGHT

WALK

Over 1300 people through Brisbane take a stroll to raise money for MS

A GLOBAL MOVEMENT

How the world united with a common goal: to raise awareness of MS

P3

COOLING REBATE P5 State Government a new electricity introduces rebate for low-income Queenslanders with multiple sclerosis

FEATURE STORY P10 Debbie Smart was diagnosed with MS, but it didn’t stop her from moving to Africa to help vulnerable children

RESEARCH

NEWS

P15

MS Research Australia provides you with the latest updates on MS research

P15

– QLD

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26 MAY 2010

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LIFE

– QLD

THE BAY

McKINNON

MS Awareness

Multiple Sclerosis Society of Queensland 286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151 ABN 56 731 473 412

Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld

“MS has been very challenging.

Not

things by halves, one to do I will set off who are worse hiking the snowfields off. and I look forward I love my life in NZ, snorkelling with to everything sharks that life offers. and turtles in Port Douglas, and cruising I look at MS as the Coast on a a Harley…as a challenge and rewarding passenger. not is an acceptance a disability. It Then without announcement, cards are dealt of whatever I can be back to you in this as the resident life. It is your celebrity in hospital choice on how you are going to learning to walk again. manage that hand.

I guess I look at life through I have managed different eyes these days and condition throughthis tend to live in the moment. positive thinking, meditation, Just before Sophia’s pilates, swimming, diet Sharon and Sophia fifth birthday and an (she is 10 now), Ball amazing amount my Mum asked their puppy Millie with of love and her what her friendship. I three birthday had wishes were. opting for naturalbeen totally drug free for She stated that 7 years therapies. However resistance, in poodle puppy…but she “would LOVE a violin, after much 2001, a most of all Grandma which can lessen I went on injection treatment love a cure for I would MS and that the severity of Mummy’s work properly relapse. again”. She received legs would I was totally needle phobic and recently the violin Millie the poochon and now I inject daily: I am up waiting for the to myself puppy, and is gift of a cure. learnt to walk about 2000 injections so still far! from I am 41 now, been blind twice. scratch about 16 times I have lived and have and I am aware with MS for over 12 years MS has been of the realities understanding a gift of this condition, that the time sense of urgency to me as it has given me could worsen. may come when about life, encouraging a Maybe through procrastinate it me not to it won’t. I am about what I diligent management, praying that would I definitely do it won’t. not want pity…therelike to do one day.

When life hands are many people you a bag of go make lemonade!” lemons – you simply

Activities happening all around the world!

Find out how you can

take part

Week 26 May - 4 June

Life at Annerley The official launch

HOUSE

A new era of respite care in an idyllic setting on the Gold Coast

MS Life

Jonathan Loraine

and Bruce Milligan

Summer Edition

MS Australia

– QLD

Giving life back

LIFE

CEO’s Desk 2 Life Options 3 Ian’s Story 4 In Memory of John 5 Reading for the Family 6 Storming Parliament 8 Events Research Breakthrough 9 10 MS Book Reviews 12

B_l_d] M_j^ 3P]PUN >P[O 4: CI

2009

MS Life

QUEENSLAND

Spring 2010

BREAKTHROUGH MS RESEARCH Scientists have identified the major common genetic variants that contribute to the cause of MS

Life at Annerley....

COMPLETED!

MS gene discovery

OPTIONS ORAL TREATMENT JOINS PBS Gilenya® is the first oral treatment for relapsing remitting MS to become available on the PBS

TREVOR FARRELL: GIVING LIFE BACK We celebrate the era as Executive end of an Director Trevor Farrell prepares to retire after nearly 30 years

Giving back independence

2009

and dignity

MS brought

us together!

Q&A WITH MAYOR PAUL PISASALE Meet one of the most inspiring people living with MS in Queensland, Mayor of Ipswich Paul Pisasale

LIFE

Winter Edition

Giving life back

QUEENSLAND

BOB AND KAREN’S

MS Life Summer 2011

Kate finds her dream job

CCSVI DEBATE

LOVE STORY

MS Australia

– QLD

Why MS organisations are proceeding with caution on new treatments

GIVING LIFE

BACK

The ambitious program to provide integrated and dignified care

FOR THE CAUSE Meet the Queenslanders supporting MS research and regional services

MS Life Winter 2010

The First Official

World MS Day

PwMSQ A new framework and strengthen to expand the MS support group network

MS Australia

Vitamin D

are you getting

enough?

Our New MS Ambassadors

LEIZA’S STORYp.3

MCKINNON HOUSE FOR RESPITE p.6

PREPARING FOR THE SUMMER HEAT p.7

MS Australia

Questions about MS?

We’ve got the answers you’re looking for

LIFE AT ANNERLEY...

MS SOCIETY OF QLD PURCHASES PARTIALLY COMPLETED TOWN HOUSES AS PART OF LIFE

>c i]^h ZmXZgei [gdb ]Zg heZZX] id i]Z eg^bVgn hX]dda hijYZcih! H]Vgdc ZmeaV^ch l]Vi ^iÉh a^`Z id a^kZ l^i] BH Ä VcY ]dl BH ]Vh ^che^gZY ]Zg id a^kZ a^[Z id i]Z [jaa#

MOVEMENT!

26 MAY 2010

– QLD

A YEAR OF EMPLOYMENT AND MS

LET’S CRUISE

Helen Emery takes on the high seas in style with husband Graham

NEWS

VIRAL MS CAMPAIGN Learn what Mayor of Ipswich Paul Pisasale feels about employment and MS

LIFE Queensland

KdajbZ (! 6j\jhi '%%+

QUEENSLAND Giving life back

Debbie strives despite MS

TABLET TALK

A look at new oral for MS that offer treatments more options

RESEARCH

MS Research Australia provides you with the latest updates on MS research

MS Australia

Employment Power

A MISSION

mum won’t let

– QLD

worldMSday

BRISSIE TO

Brisbane’s biggest charity ride celebrates 20 its biggest ever years and event

WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE

Lisa’s motherhood story of and MS

KID

FOR THE CAUSE

Meet the Queenslanders supporting MS research and regional services

FEATURE STORY P10 Debbie Smart was diagnosed with MS, but it didn’t stop her from moving to Africa to help vulnerable children

MS

Winter 2011

LOUISA ON

How a young pg. 8

Nominate your MS Hero

MS Australia

Australian of the Year

GET PHYSICAL

The link between exercise and quality of life for people with MS

Spring 2011

GIVING LIFE

The ambitious program to provide integrated and dignified care

Winter 2010

COMEBACK

Geoff Huegill lends his support to MS, fresh from taking gold in Delhi

BACK

Debbie strives despite MS

TABLET TALK

A look at new oral for MS that offer treatments more options

MSLIFE. MS Life

How you can help spread the word about MS this May

2 3 3 4 6 8 9 10

Have Us!”

JOIN THE GLOBAL

DAY

Summer edition

Why MS organisations are proceeding with caution on new treatments

MS Life

Lisa’s motherhood story of and MS

KID

Geoff Huegill lends his support to MS, fresh from taking gold in Delhi

2009

MS

CEO’s Message Catherine’s Story Our New Website Life at Annerley Feature Articles Update MS Readathon 30th Birthday Fatigue Research MS Services

tell...

“We Have MS, But It Doesn’t

Autumn 2011

WORLD MS

How you can help the global campaign on employment and MS

enough?

Educate, Motivate & Advocate

AO

GIVING LIFE

The ambitious program to provide integrated and dignified care

MS Life

– QLD

Winter 2010

COMEBACK

AO

AWARENESS MONTH THIS MAY

Lisa & Sandy

MS Life

MS CLINIC CONVERSATIONS

In depth answers frequently asked to the most MS questions

QUEENSLAND

Kate finds her dream job

CCSVI DEBATE

LOVE STORY

MS Australia

Vitamin D

are you getting

Our New MS Ambassadors

Kate finds her dream job

CCSVI DEBATE

Why MS organisations are proceeding with caution on new treatments

LOVE STORY

MS Australia

enough?

Educate, Motivate & Advocate

Autumn Edition

IN THIS ISSUE...

Services

to support you

& taking control

9 10

worldMSday

and dignity

MS brought

us together!

Q&A WITH MAYOR PAUL PISASALE Meet one of the most inspiring people living with MS in Queensland, Mayor of Ipswich Paul Pisasale

LIFE

Ms Penelope Wensley

– QLD

11

for MS

2009

ORAL TREATMENT JOINS PBS Gilenya® is the first oral treatment for relapsing remitting MS to become available on the PBS

OUR PATRON

Her Excellency

MS Australia

12

Giving life back

Questions about MS?

BREAKTHROUGH MS RESEARCH Scientists have identified the major common genetic variants that contribute to the cause of MS

Giving life back

The First Official

PREPARING FOR THE SUMMER HEAT p.7

Spring 2010

Vitamin D

are you getting

3 4 5 6 7

idea...

Needed

LIFE

QUEENSLAND

Life at Annerley....

COMPLETED!

MS gene discovery

OPTIONS

World MS Day

MCKINNON HOUSE FOR RESPITE p.6

B_l_d] M_j^ 3P]PUN >P[O 4: CI

MS Life

MS brought

Meet one of the most inspiring people living with MS in Queensland, Mayor of Ipswich Paul Pisasale

Winter Edition

QUEENSLAND

Ms Penelope Wensley

LIFE

2008

2 Bay

8

Ambassadors Notice of AGM

ABN 56 731 473 412 Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld

2009

Ambassador, National Panel and person with Horse Judge MS

embership with us LEIZA’S STORYp.3

take part

2009

QUEENSLAND

us together!

Q&A WITH MAYOR PAUL PISASALE

We celebrate the era as Executive end of an Director Trevor Farrell prepares to retire after nearly 30 years

LIFE

Our New MS Ambassadors

Multiple Sclerosis Society of Queensland 286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151

Spring Edition

2 nd Annual MS National Advocates Conference

Storming Parliament House

Jenni

B_l_d] M_j^ 3P]PUN >P[O 4: CI

2009

We’ve got the answers you’re looking for

LIFE AT ANNERLEY...

MS SOCIETY OF QLD PURCHASES PARTIALLY COMPLETED TOWN HOUSES AS PART OF LIFE

how you can

and Bruce Milligan

Summer Edition

>c i]^h ZmXZgei [gdb ]Zg heZZX] id i]Z eg^bVgn hX]dda hijYZcih! H]Vgdc ZmeaV^ch l]Vi ^iÉh a^`Z id a^kZ l^i] BH Ä VcY ]dl BH ]Vh ^che^gZY ]Zg id a^kZ a^[Z id i]Z [jaa# “MS has been very challenging.

Not

things by halves, one to do I will set off who are worse hiking the snowfields off. and I look forward I love my life in NZ, snorkelling with to everything sharks that life offers. and turtles in Port Douglas, and cruising I look at MS as the Coast on a a Harley…as a challenge and rewarding passenger. not is an acceptance a disability. It Then without announcement, cards are dealt of whatever I can be back to you in this as the resident life. It is your celebrity in hospital choice on how you are going to learning to walk again. manage that hand.

I guess I look at life through I have managed different eyes these days and condition throughthis tend to live in the moment. positive thinking, meditation, Just before Sophia’s pilates, swimming, diet Sharon and Sophia fifth birthday and an (she is 10 now), Ball amazing amount my Mum asked their puppy Millie with of love and her what her friendship. I three birthday had wishes were. opting for naturalbeen totally drug free for She stated that 7 years therapies. However poodle puppy…but she “would LOVE a violin, resistance, in after much 2001, a most of all Grandma love a cure for which can lessen I went on injection treatment I would MS and that the severity of Mummy’s work properly relapse. again”. She received legs would I was totally needle phobic and recently the violin Millie the poochon and now I inject daily: I am up waiting for the to myself puppy, and is gift of a cure. learnt to walk about 2000 injections so still far! from I am 41 now, been blind twice. scratch about 16 times I have lived and have and I am aware with MS for over 12 years MS has been of the realities understanding a gift of this condition, that the time sense of urgency to me as it has given me could worsen. may come when about life, encouraging a Maybe through procrastinate it me not to it won’t. I am about what I diligent management, praying that would I definitely do it won’t. not want pity…therelike to do one day.

When life hands are many people you a bag of go make lemonade!” lemons – you simply

Activities happening all around the world!

Find out

Week 26 May - 4 June

The official launch

– QLD

Again

MS Readathon

brissie to for the bay

3800 CYCLIST PEDAL FOR A CURE!

Learn what Mayor of Ipswich Paul Pisasale feels about employment and MS

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>c i]Z nZVgh h^cXZ! H]Vgdc ]Vh ZcYjgZY cjbZgdjh hZg^djh BH ViiVX`h! Wji h]ZÉh cdi VWdji id aZi ]Zg BH \Zi ^c i]Z lVn d[ a^k^c\ a^[Z id ^ih [jaaZhi# =Zg edh^i^kZ djiadd` ]Vh ^che^gZY ]Zg YVj\]iZg Hde]^V! V NZVg * hijYZci Vi 6h]\gdkZ HiViZ HX]dda! id ZcXdjgV\Z ]Zg [Zaadl hijYZcih id eVgi^X^eViZ ^c i]Z BH GZVYVi]dc VcY ]Zae gV^hZ [jcYh id hjeedgi gZhZVgX] ^cid V XjgZ [dg Bjai^eaZ HXaZgdh^h#

Hde]^V ^h dcZ d[ FjZZchaVcYÉh ]^\]Zhi BH GZVYVi]dc [jcYgV^hZgh# I]^h nZVg! h]Z VcY ]Zg bdi]Zg \VkZ V heZX^Va egZhZciVi^dc id i]Z hX]dda VhhZbWan id ZcXdjgV\Z di]Zgh id _d^c ^c i]Z fjZhi id ÈgZVY [dg V gZVhdcÉ#

MS Awareness

Life at Annerley

HOUSE

Jonathan Loraine

WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE

– QLD

VIRAL MS CAMPAIGN

Learn what Mayor of Ipswich Paul Pisasale feels about employment and MS

“MS has been very challenging.

Not

things by halves, one to do I will set off who are worse hiking the snowfields off. and I look forward I love my life in NZ, snorkelling with to everything sharks that life offers. and turtles in Port Douglas, and cruising I look at MS as the Coast on a a Harley…as a challenge and rewarding passenger. not is an acceptance a disability. It Then without announcement, cards are dealt of whatever I can be back to you in this as the resident life. It is your celebrity in hospital choice on how you are going to learning to walk again. manage that hand.

I guess I look at life through I have managed different eyes these days and condition throughthis tend to live in the moment. positive thinking, meditation, Just before Sophia’s pilates, swimming, diet Sharon and Sophia fifth birthday and an (she is 10 now), Ball amazing amount my Mum asked their puppy Millie with of love and her what her friendship. I three birthday had wishes were. opting for naturalbeen totally drug free for She stated that 7 years therapies. However poodle puppy…but she “would LOVE a violin, resistance, in after much 2001, a most of all Grandma love a cure for which can lessen I went on injection treatment I would MS and that the severity of Mummy’s work properly relapse. again”. She received legs would I was totally needle phobic and recently the violin Millie the poochon and now I inject daily: I am up waiting for the to myself puppy, and is gift of a cure. learnt to walk about 2000 injections so still far! from I am 41 now, been blind twice. scratch about 16 times I have lived and have and I am aware with MS for over 12 years MS has been of the realities understanding a gift of this condition, that the time sense of urgency to me as it has given me could worsen. may come when about life, encouraging a Maybe through procrastinate it me not to it won’t. I am about what I diligent management, praying that would I definitely do it won’t. not want pity…therelike to do one day.

When life hands are many people you a bag of go make lemonade!” lemons – you simply

Activities happening all around the world!

Find out

Jonathan Loraine

LIFE

Life at Annerley....

COMPLETED!

MS gene discovery

ORAL TREATMENT JOINS PBS

Scientists have identified the major common genetic variants that contribute to the cause of MS

Giving life back

The First Official

Lynette Walks Events

An 11 year old’s

New Record

VIRAL MS CAMPAIGN

PwMS Josie Montano during Queensland’s helps floods and cyclones

LIFE Queensland

KdajbZ (! 6j\jhi '%%+

Giving life back

26 MAY 2010

MOVEMENT!

26 MAY 2010

McKINNON

A new era of respite care in an idyllic setting on the Gold Coast

MS Australia

OUR PATRON

Giving life back

EMPLOYMENT

pg. 12

15 One man’s struggle Living Positively against the odds with MS

worldMSday

THE BAY

Her Excellency

QUEENSLAND

MS hold her back

LIFE

QUEENSLAND

JOIN THE GLOBAL

BRISSIE TO

Brisbane’s biggest charity ride celebrates 20 its biggest ever years and event

OPTIONS

PREPARING FOR THE SUMMER HEAT p.7

THIS ISSUE CEO’s Desk Brissie to the

Portrait of Posterity Work of Aart

pg. 8

Working with MS Workshops

– QLD

Employment Power

A MISSION

mum won’t let

pg. 8

Nominate your MS Hero

MS Australia

Australian of the Year

GET PHYSICAL

The link between exercise and quality of life for people with MS

MS AND SES

PwMS Josie Montano during Queensland’s helps floods and cyclones

>c i]^h ZmXZgei [gdb ]Zg heZZX] id i]Z eg^bVgn hX]dda hijYZcih! H]Vgdc ZmeaV^ch l]Vi ^iÉh a^`Z id a^kZ l^i] BH Ä VcY ]dl BH ]Vh ^che^gZY ]Zg id a^kZ a^[Z id i]Z [jaa#

MOVEMENT!

Week 26 May - 4 June

The official launch

– QLD

Questions about MS?

BREAKTHROUGH MS RESEARCH

Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld

MCKINNON HOUSE FOR RESPITE p.6

Volume 3 Spring Edition, September

LOUISA ON

How a young

Have Us!”

worldMSday

A YEAR OF EMPLOYMENT AND MS

MS Awareness

Life at Annerley

HOUSE

We’ve got the answers you’re looking for

World MS Day LEIZA’S STORYp.3

LIFE

tell...

“We Have MS, But It Doesn’t

Autumn 2011

DAY

McKINNON

A new era of respite care in an idyllic setting on the Gold Coast

MS Australia

Giving life back

Queensland

– QLD

Introducing Facebook

Lisa & Sandy

MS Life

WORLD MS

How you can help the global campaign on employment and MS

WEEK

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– QLD

P15

MS Research Australia provides you with the latest updates on MS research

MS

AWARENESS MONTH THIS MAY How you can help spread the word about MS this May

IN THIS ISSUE...

Services

to support you

& taking control

9 10

MS AWARENESS

Read about the lip smacking campaign that had everyone talking about MS

LIFE Queensland

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11

Spring 2011

MS Australia

Employment Power

AND MS

See how Queensland took part in World MS Day celebrations this year

pg.

Autumn 2010

Giving life back

12

MS Life

EMPLOYMENT

pg. 12

15 One man’s struggle Living Positively against the odds with MS

26 MAY 2010

Debbie strives despite MS

TABLET TALK

Geoff Huegill lends his support to MS, fresh from taking gold in Delhi

Autumn Edition

3 4 5 6 7 8

idea...

Giving life back

MS

MS hold her back

LIFE

26 MAY 2010

THE BAY

WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE

COMEBACK

AO

LIFE

Giving life back

2 Bay

Again

Needed

QUEENSLAND

MS CLINIC CONVERSATIONS

In depth answers frequently asked to the most MS questions

LIVING WITH

Winter 2011

pg. 8

Working with MS Workshops

QUEENSLAND

worldMSday

A YEAR OF EMPLOYMENT AND MS

Her Excellency

QUEENSLAND 2008

THIS ISSUE CEO’s Desk Brissie to the

Introducing Facebook Portrait of Posterity Work of Aart Lynette Walks Events An 11 year old’s MS Readathon Ambassadors Notice of AGM

LIFE

for MS

FOR PEOPLE

A MISSION

mum won’t let

– QLD

worldMSday

BRISSIE TO

Brisbane’s biggest charity ride celebrates 20 its biggest ever years and event

enough?

Educate, Motivate & Advocate

OUR PATRON

PREPARING FOR THE SUMMER HEAT p.7

Volume 3 Spring Edition, September

ABN 56 731 473 412 Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld

2009

LIFE

PREMIER MAGAZINE

LOUISA ON

How a young

pg. 8

Nominate your MS Hero

MS Australia

GET PHYSICAL

The link between exercise and quality of life for people with MS

LIFE AT ANNERLEY...

MS SOCIETY OF QLD PURCHASES PARTIALLY COMPLETED TOWN HOUSES AS PART OF LIFE

PwMSQ

Meet the Queenslanders supporting MS research and regional services

MS Life

– QLD

Winter 2010

are you getting

Our New MS Ambassadors MCKINNON HOUSE FOR RESPITE p.6

brissie to for the bay

3800 CYCLIST PEDAL FOR A CURE!

QUEENSLAND

2 3 3 4 6 8 9 10

Have Us!”

Australian of the Year

DAY

Spring 2011

Summer edition

CEO’s Desk 2 Life Options 3 Ian’s Story 4 In Memory of John 5 Reading for the Family 6 Storming Parliament 8 Events Research Breakthrough 9 10 MS Book Reviews 12

Kate finds her dream job

CCSVI DEBATE Why MS organisations are proceeding with caution on new treatments

Vitamin D

The First Official

World MS Day LEIZA’S STORYp.3

LIFE

Queensland

New Record Multiple Sclerosis Society of Queensland 286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151

Spring Edition

Ambassador, National Panel and person with Horse Judge MS

CEO’s Message Catherine’s Story Our New Website Life at Annerley Feature Articles Update MS Readathon 30th Birthday Fatigue Research MS Services

tell...

“We Have MS, But It Doesn’t

WORLD MS

How you can help the global campaign on employment and MS

MS Life

QUEENSLAND

and dignity

MS brought

us together!

Q&A WITH MAYOR PAUL PISASALE

We celebrate the era as Executive end of an Director Trevor Farrell prepares to retire after nearly 30 years

2 nd Annual MS National Advocates Conference

Storming Parliament House

Jenni

AUTUMN 2012

QUEENSLAND’S

Lisa & Sandy

Autumn 2011

MS CLINIC CONVERSATIONS

In depth answers frequently asked to the most MS questions

LIFE

– QLD

2009

BREAKTHROUGH MS RESEARCH Scientists have identified the major common genetic variants that contribute to the cause of MS

MSLIFE. MS Life

MS

AWARENESS MONTH THIS MAY

IN THIS ISSUE...

Services

to support you

& taking control

MS Life

JOIN THE GLOBAL

for MS

Ambassador, National Panel and person with Horse Judge MS

MS Australia

Questions about MS?

We’ve got the answers you’re looking for

Life at Annerley....

COMPLETED!

MS gene discovery

OPTIONS

How you can help spread the word about MS this May

3

4

6

7

8

9

10

11

12

Giving life back

2 nd Annual MS National Advocates Conference

Storming Parliament House

Jenni

B_l_d] M_j^ 3P]PUN >P[O 4: CI

2009

QUEENSLAND

Needed

QUEENSLAND

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Not

things by halves, one to do I will set off who are worse hiking the snowfields off. and I look forward I love my life in NZ, snorkelling with to everything sharks that life offers. and turtles in Port Douglas, and cruising I look at MS as the Coast on a a Harley…as a challenge and rewarding passenger. not is an acceptance a disability. It Then without announcement, cards are dealt of whatever I can be back to you in this as the resident life. It is your celebrity in hospital choice on how you are going to learning to walk again. manage that hand.

I guess I look at life through I have managed different eyes these days and condition throughthis tend to live in the moment. positive thinking, meditation, Just before Sophia’s pilates, swimming, diet Sharon and Sophia fifth birthday and an (she is 10 now), Ball amazing amount my Mum asked their puppy Millie with of love and her what her friendship. I three birthday had wishes were. opting for naturalbeen totally drug free for She stated that 7 years therapies. However poodle puppy…but she “would LOVE a violin, resistance, in after much 2001, a most of all Grandma love a cure for which can lessen I went on injection treatment I would MS and that the severity of Mummy’s work properly relapse. again”. She received legs would I was totally needle phobic and recently the violin Millie the poochon and now I inject daily: I am up waiting for the to myself puppy, and is gift of a cure. learnt to walk about 2000 injections so still far! from I am 41 now, been blind twice. scratch about 16 times I have lived and have and I am aware with MS for over 12 years MS has been of the realities understanding a gift of this condition, that the time sense of urgency to me as it has given me could worsen. may come when about life, encouraging a Maybe through procrastinate it me not to it won’t. I am about what I diligent management, praying that would I definitely do it won’t. not want pity…therelike to do one day.

When life hands are many people you a bag of go make lemonade!” lemons – you simply

Activities happening all around the world!

Find out

Week 26 May - 4 June

The official launch

HOUSE

A new era of respite care in an idyllic setting on the Gold Coast

MS Australia

Ambassadors

LIFE

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BRISSIE TO

Brisbane’s biggest charity ride celebrates 20 its biggest ever years and event

Notice of AGM

ABN 56 731 473 412 Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld

2009

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26 MAY 2010

MOVEMENT!

26 MAY 2010

Life at Annerley

GET PHYSICAL

The link between exercise and quality of life for people with MS

Spring 2011

idea...

MS Readathon

brissie to for the bay

3800 CYCLIST PEDAL FOR A CURE!

Learn what Mayor of Ipswich Paul Pisasale feels about employment and MS

BH 6jhigVa^V XZaZWgViZh *% nZVgh d[ ZmXZei^dcVa hZgk^XZ id i]Z cVi^dc ^c '%%+

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worldMSday worldMSday

MS Awareness

Australian of the Year

DAY

MS Life

2009

Again

Events

An 11 year old’s

New Record

VIRAL MS CAMPAIGN

PwMS Josie Montano during Queensland’s helps floods and cyclones

LIFE Queensland

KdajbZ (! 6j\jhi '%%+

QUEENSLAND

JOIN THE GLOBAL

WORLD MS

How you can help the global campaign on employment and MS

5

Work of Aart

LOUISA ON

How a young

Have Us!”

Autumn 2011

Giving life back

Summer edition

CEO’s Desk 2 Life Options 3 Ian’s Story 4 In Memory of John 5 Reading for the Family 6 Storming Parliament 8 Events Research Breakthrough 9 10 MS Book Reviews 12

Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld

2009

2

Bay

Portrait of Posterity

tell...

“We Have MS, But It Doesn’t

MS Life

QUEENSLAND

MS CLINIC CONVERSATIONS

In depth answers frequently asked to the most MS questions

2008

THIS ISSUE

CEO’s Desk

Brissie to the

Introducing Facebook

Lisa & Sandy

LIFE

for MS

LIFE

Autumn Edition

Giving life back

Volume 3 Spring Edition, September

11 12

ABN 56 731 473 412 Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld

2009

Ambassador, National Panel and person with Horse Judge MS

QUEENSLAND

LIFE

QUEENSLAND

How you can help spread the word about MS this May

3 4 5 6 7 8

Ambassadors Notice of AGM

FOR PEOPLE

AWARENESS MONTH THIS MAY

2 Bay

Again

MS Readathon

brissie to for the bay

3800 CYCLIST PEDAL FOR A CURE!

PREMIER MAGAZINE

MS

2008

THIS ISSUE CEO’s Desk Brissie to the

Introducing Facebook Portrait of Posterity Work of Aart Lynette Walks Events An 11 year old’s

New Record Multiple Sclerosis Society of Queensland 286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151

Spring Edition

2 nd Annual MS National Advocates Conference

Storming Parliament House

Jenni

LIFE AT ANNERLEY...

MS SOCIETY OF QLD PURCHASES PARTIALLY COMPLETED TOWN HOUSES AS PART OF LIFE Multiple Sclerosis Society of Queensland 286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151 ABN 56 731 473 412

Less than 30% of eligible clients completed and returned the survey. The results however align with the outcome of other regions placing us in a position where we feel confident that we are meeting client’s needs.

OUR PATRON

Her Excellency

Educate, Motivate & Advocate

Ms Penelope Wensley

COMEBACK

AO

Lisa’s motherhood story of and MS

KID

Geoff Huegill lends his support to MS, fresh from taking gold in Delhi

Debbie strives despite MS

TABLET TALK

A look at new oral for MS that offer treatments more options

LET’S CRUISE

Helen Emery takes on the high seas in style with husband Graham

MOONLIGHT

WALK

Over 1300 people through Brisbane take a stroll to raise money for MS

A GLOBAL MOVEMENT

How the world united with a common goal: to raise awareness of MS

P3

COOLING REBATE P5 State Government a new electricity introduces rebate for low-income Queenslanders with multiple sclerosis

FEATURE STORY P10 Debbie Smart was diagnosed with MS, but it didn’t stop her from moving to Africa to help vulnerable children

RESEARCH

NEWS

P15

MS Research Australia provides you with the latest updates on MS research

member with MS Queenslan d? ip with us, which n and education is just $33 a year, assists us in about MS and leading edge MS providing ultiple sclerosis. research to find a s the information ght and our Onlinyou receive through publications e Resource Centr such as MS e on our webs ite. receive very positiv e feedback about p client-focuse the information d magazine, MS Life. We are comm content inuing to provid e this who has an intere valuable information resou itted to rce st circulation to MS in MS and as such we do not to anyone restrict its Queensland mem at a substantial cost and we need bers only. But this comes your support.

So if you value the Queensland providpublications and services MS by joining or renewes then please show your support Queensland today ing your membership with MS join us for a year, . For a fee of just $33 you can or you might consid a Life Member er becom for paying your mem just $330 to avoid worrying ing Queensland come bership ever again! The streng about s th from of MS our active and comm mbers and we would welcome itted ion to our vital your work.

mber you’ll also have xciting future plans the opportunity to have of MS Queensland eeting (AGM) at the in November. mber, simply comp eensland as soon lete the form overleaf and as s living with MS, possible. On behalf we look forwa rd to upport for a world free from MS mpact.

– QLD

– QLD

To see a list of upcoming online MS Webinars and workshops in your area visit our website www.msqld.org.au or call our InfoLine on 1800 177 591.

MS SUPPORT GROUP UPDATE There seems to be a busy and positive feel to the start of 2015. With a lot of activity in the MS research area, there are a number of drugs being researched and available for the treatment of MS. There is also a particular focus on stem cell treatments which is easily the most popular topic in the MS community today.

The Ann Langley Forum held late last year brought many support group representatives together for the second year. Although hampered by the damaging hail storms, everyone enjoyed the time in Brisbane and commended the preparation by the team at MS Queensland. It was a resounding success and an annual event we all look forward to.

Last year MS Queensland also opened their doors to the University of Queensland (UQ) which involved a student team working alongside MS Support Groups around Queensland to undertake a survey on performance and communication between MS Queensland and the groups. The students spent much of their own personal time on this project and presented their findings to a forum at UQ and also to the staff at MS Queensland.

Thank you to all the groups who took part in this survey, it was indeed a successful project for both parties.

Natalie Walsh has been our Queensland NDIS champion and is encouraging everyone to prepare their wants and needs as the scheme becomes a reality from the middle of next year.

2016 will see the NDIS begin to be rolled out across Queensland.

So much to look forward to this year!

Warm regards, Jenni State Convenor, pwMS Support Groups

MS LIFE – AUTUMN 2015

CLIENTS HAVE THEIR

17

O

1 30/03/2015

1:24 pm

A day in the life of a

MS

Support Worker

recently WE spoke with three of our Granston Lodge support workers Di, Sina and Loreta to see what a typical ‘day in the life’ of a MS support worker can look like.

For people living with progressive MS who can no longer self-manage, they want to maintain their independence as much as possible and be free to participate in life as any other person would. To support them, MS Queensland offer two accommodation facilities – Granston Lodge (which houses 16 permanent residents and up to six respite beds) and Annerley Apartments (which houses eight permanent residents).

MS LIFE – AUTUMN 2015

18

6:00am – Morning shift

7:00-8:30am – Breakfast

Their shift starts with a handover from the night shift support worker then it’s time to help residents out of bed to start their day. Each of the 22 residents can take between 30 – 90 minutes to move from their bed to the shower and get dressed for the day so support workers need to work in pairs.

Their attention to detail for each individual resident is what makes their work so special, whether it’s remembering whether they like their hair braided or blow-dried, what jewellery they would like to wear with the day’s outfit, or what aftershave the men would like to wear.

Once the kitchen is open, support workers help the first residents with breakfast. While this is happening, some residents are still receiving assistance with their morning routines including showers – there can be up to three pairs working per shift.

To find out more about our accommodation services, please call on our InfoLine on 1800 177 591.

12noon – Lunch By the time noon approaches, support workers have only just finished assisting residents through their morning routines.

They help residents with meals before an afternoon of tidying up while the residents rest, go on social outings or attend appointments. The emphasis is placed on working towards the goals that are set for each resident to ensure that they get the best out of life and continue to live positively with MS.

1:45pm – Afternoon shift Afternoon support workers begin their shift while some residents are out shopping, seeing a movie, or seeing friends and family. Support workers work closely with our activities team to arrange activities and transport.

5:00pm – Dinner For those residents who have decided to stay home, dinner is served from 5pm before supper at 7pm. Once again, support workers assist the residents with meals before they start to wind down the evening.

9:45pm – Night shift At this time the afternoon support workers handover to the night shift staff who work through to 6am the following day, caring for residents when and where they need.

Questions with Tim

ROLE OF CARERS

The term 'carer' is recognised and defined in the Carer Recognition Act 2010 (Australian Government) as “people who provide personal care, support and assistance to another individual in need of support due to disability, medical condition, including terminal or chronic illness, mental illness or is frail and aged.” The relevant Queensland legislation – Carers (Recognition) Act 2008 (reprint June 2012) states “a carer is an individual who provides, in a non-contractual and unpaid capacity, ongoing care or assistance to another person who, because of disability, frailty, chronic illness or pain, requires assistance with everyday tasks.” Both these documents are freely available online.

The Australian Government Act identifies ten key areas/ principals that reflect how carers should be treated and supported; all of which MS Queensland supports.

Carers should be considered as partners with other care providers in the provision of care, acknowledging the unique knowledge and experience of carers.

s e c r u o MS res Carer resources Carers have many information needs with regards to MS, including some of the more practical issues. At MS Queensland we have a wide range of resources on MS which are available to clients as well as carers.

Our staff will always, whenever possible and appropriate, invite, include and acknowledge partners and carers in all activities for our clients. Our primary duty of care centres on support for our registered clients and their privacy and confidentiality is always paramount in our service delivery.

There is a wide range of services to support carers, but finding out about them or accessing them can be time consuming, difficult and confusing. We provide carers with appropriate information on MS, as well as ensuring awareness of carer support services from specialist agencies such as Carers Queensland and Commonwealth Respite and Carelink Centres. MS Queensland staff will always support these organisations with MS specific resources and education whenever we are invited.

It cannot be understated the extraordinary support carers provide to our clients, and we exist to support all people living with MS to get the best out of life.

Tim MS Nurse Practitioner Manager of Specialist Education If you have an MS-related question to ask our Manager of Specialist Education Tim, please email Tim at mslife@msqld.org.au

If you have any questions or would like more information for carers and families see below, visit our website www.msqld.org.au/ msresources or call our InfoLine on 1800 177 591.

Family Matters information series For families and friends of people living with MS. For more information visit www.mssociety.org.au/ booklets.asp arers Queensland and Australia C For more information visit www.carersqld.asn.au Commonwealth Respite and Carelink Centres www.health.gov.au/ccsd/

For more information about any of these resources, or to have a copy mailed or emailed to you, please email us at info@msqld.org.au or call our InfoLine on 1800 177 591.

MS LIFE – AUTUMN 2015

It is an unfortunate reality of a progressive disease like MS that over time many of our clients and their families, and sometimes friends, will realise a change in the relationships and roles has occurred. The use of the word ‘carer,’ for want of a better term, sometimes becomes an addition to wife, husband, son, daughter, partner or friend. This can be a necessity and may cause significant changes and challenges in the relationship dynamic.

19

e pl o e p lp e h t a h t s t n e v e s m h t i w living 1â&#x20AC;&#x201C;31 MAY

3 MAY

MS Awareness Month

27 MAY World MS Day

MS Swimathon Townsville

30 MAY 2012

www.KissGoodbyetoMS.org

www.MSswimathon.com.au

www.WorldMSDay.org

21 JUNE

23 OCTOBER

NOVEMBER

MS Moonlight Walk

MS Swimathon Toowoomba & Jindalee

www.MoonlightWalk.com.au

www.MSswimathon.com.au

Enerflex MS Brissie to the Bay

www.BrissietotheBay.com.au

Dates TBC

For more information contact the MS Queensland events team on 07 3840 0828 or email events@msqld.org.au Unless otherwise stated, the views expressed in MS Life and submitted photography are those of individual authors and MS Clients, and not of MS Queensland. MS Queensland does not expect or invite any person to act or rely on any information, statement or opinion in MS Life, and readers should make and rely on their own inquiries, and obtain professional advice, before making any decisions or giving any advice arising out of any such information, statement or opinion. Neither MS Queensland nor any of its employees, agents or contributors shall be liable for any errors or omissions in any material in MS Life, and in no event will MS Queensland or any of its employees, agents or contributors be liable for any loss or damage arising from reliance on any information, statement or opinion in MS Life. Apart from any use permitted under the copyright act, no material in MS Life may be reproduced or communicated to the public in whole or in part without written permission from MS Queensland or the relevant copyright owner. Š 2015 Advertising Disclaimer: Advertisements are provided to assist consumers to locate and purchase suitable products and services. MS Queensland does not endorse any one product or service over another, nor do we receive any commission on sale of items. Consumers are encouraged to discuss the options for purchase with the particular supplier as MS Queensland is not liable in the event the product is not satisfactory.

AY D O T E t a Don HELP Support MS Queensland

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per month

Payment method:

Please return this form to: MS Society of Queensland Locked Bag 370 COORPAROO DC QLD 4151 OR Phone: 1800 CURE MS

(1800 2873 67) OR Fax: (07) 3840 0813 OR secure web donations www.msqld.org.au/donate

My personal details are as follows: Full Name...................................................... .....................................................................

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Your privacy: MS Queensland complies with the Australian Privacy Principles. Our Privacy policy is available on the website at www.msqld.org.au This information is being collected for the purpose of providing care and services to clients, and promotional activities and information services. If you wish to change the way you give, or to update your personal details, please call our supporter services team on 07 3840 0888.

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