MS Life Autumn 2012 by MS Queensland

MSLIFE. AUTUMN 2012

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

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

LOUISA ON A MISSION

How a young mum won’t let MS hold her back pg. 8

pg. 8

pg. 12

pg. 15

Nominate your MS Hero

Working with MS Workshops

ne man’s struggle Living Positively O against the odds with MS

LETTER FROM THE EDITOR

CONTENTS

Dear readers,

LETTER TO THE EDITOR MS LIFE SUMMER edition I’m just writing to say how encouraging and especially reassuring a couple of articles were in the last issue of MS Life (Summer 2012). I’m sure many readers would find it so too.

I’ve been doing my bit for my friends living with MS. Last month I hosted my own Big Dinner Party with my closest friends and family. We called it ‘MS Girls Night In’ and raised almost $300 for the Society. The burnt main course left much to be desired but my amazing ginger and apple tart for dessert made up for that! If you weren’t able to host a dinner party of your own you can still donate to one of the parties online at www.bigdinnerparty.com.au

I’m a retired almost 67 year old male who grew up in Far North Queensland. I have had sleep apnea for about 15 years, MS for the past 10 years, Diabetes Type 2 for about eight and had a Lumber discectomy and nerve decompression operation eight months ago.

As we head into a busy time of the year remember we offer our clients a Facebook page, Twitter page and YouTube channel for anyone wanting the latest updates on fundraising events, service offerings and research findings from around the world.

None of these seem unmanageable to the extent of significantly restricting my lifestyle. All seem “minor”. Seeing people much more severely affected than me I’ve often wondered (seeing that various symptoms overlap) if I’ve been misdiagnosed with one or the other. Am I imagining my symptoms? Am I a “pretender”? After checking the various “markers” along the way I’ve concluded that the specialists are probably correct – and I’m very fortunate my lifestyle is not significantly impacted.

All of these services are free and easy to access. To find them simply type the below web links into your Internet browser:

Things that were particularly reassuring from MS Life (basically identical with my own experiences) were in Leiza’s Story and the Preparing for the Summer Heat article. Thanks for the reassuring articles. As my neurologist said when he saw me for the first time since my retirement: “I’m going well. Some people are in wheelchairs by now!” Long may it last! Keep up the good work MS Life.

Facebook: www.facebook.com/msqld Twitter: www.twitter.com/#!/msqld YouTube: www.youtube.com/user/MSAustraliaQ If you have any feedback about this edition of MS Life please don’t hesitate to get in touch by emailing me at mslife@msqld.org.au MS LIFE – AUTUMN 2012

Your feedback is always appreciated. Kindest regards

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AUTUMN 2012

FROMtheCEO No one told me how busy things would be at MS QLD! Now, more than four months into my new role, there’s certainly a lot happening in our organisation. What’s exciting too is that over the next few months there are even more events and opportunities that will help raise awareness of MS and funds to continue our vital work for people living with MS. I hope you have already shared with your friends and family information about the MS Swimathons being held on the Gold Coast, Redcliffe, Cairns, Townsville and Jindalee this year. Check out the website www.MSswimathon.com.au for more information about a swim coming to a pool near you. The month of May is MS Awareness Month and many events (both big and small) will be held in Queensland and other states and will culminate in an international ‘World MS Day’ on Wednesday 30 May. I encourage you – in any way you can – to get behind our theme of “Living with MS” and help us raise community awareness of what it is to live with MS and how others can get behind the work of the MS Society in Queensland. And be assured that while these busy and exciting events are going on, we will continue to offer quality services when and where you need them; such as education, information, advocacy, physio and exercise therapy, immunotherapy, nursing support, accommodation and Regional Service Coordination. We are also very proud to be opening a brand new permanent regional office in Townsville as well as a range of after hours services for people newly diagnosed with MS. Take care,

10 WAYS TOER: OUR TOP Thi MM hERE AREThE hEAT S SU MANAGE

Melanie Editor, MS Life

P. 7

P. 8

COVER STORY

Lincoln CEO

Louisa and

son Archie

Read how a young mum’s journey with MS won’t hold Louisa and her family back. Images courtesy of Runners World

PAGE 2–3 Letter from the Editor Letter to the Editor From the CEO PAGE 4–5 MS Awareness Month World MS Day OP Shop helps fund MS equipment After hours MS exercise PAGE 6–7 A young mum’s journey with MS PAGE 8–9 MS office for Townsville MS Heroes call for nominations New Working with MS workshops Meet our RSC Team PAGE 10–11 Brissie to the Bay turns 21 Big Dinner Party success MS Swimathons in the Far North PAGE 12–13 One man’s struggle against the odds New neurologist for Far North QLD PAGE 14–15 Clinical trials for secondary progressive MS Community fundraise for MS Living positively story announced PAGE 16–17 Advocacy with Natalie MS questions with Tim PAGE 18–19 MS Resources PwMS Support Group update PAGE 20

Calendar of events

To provide feedback, make a donation to the MS Society or for more information please call 1800 287 367, email mslife@msqld.org.au or visit www.msqld.org

MS LIFE – AUTUMN 2012

I hope you are all settling well into the new year. How the first few months have already flown by. This is an exciting time for the MS Society as we prepare to once again raise awareness of MS in the community through MS Awareness Week during May and World MS Day on Wednesday 30 May.

AWARENESS MONTH

KISS GOODBYE TO MS Now in its third year, the Kiss Goodbye to MS campaign will run throughout May 2012, in the lead up to World MS Day on 30 May. Here is how you can get involved! This year, throughout the month of May, you may see many people wearing red lipstick. Different shades, different ages… different genders! They are all doing so with one thing in mind – to Kiss Goodbye to MS. So, why not get involved and wear, dare and share! Get sponsored to WEAR red lipstick, DARE others to do so (at least through buying a ‘kiss’ badge or a sticker) and SHARE the campaign through holding a Kiss Goodbye to MS event and spreading the word on Facebook and Twitter.

Op Shop

helps fund MS equipment The MS Society’s wonderful volunteers from the Ladies Auxiliary who manage the Brisbane Op Shop recently donated almost $10,000 to the Society for the purchase of much needed physiotherapy equipment.

The money will allow the Society to purchase a number of items for the gym at Dutton Park, on the north side of Brisbane and on the Gold Coast. The equipment will be used for new programs the Society is developing to assist those newly diagnosed with MS – this will include Pilates, Yoga, Tai Chi and aquatic exercise.

T Ladieshe wonderfu Auxilia l ry team

We thank the Ladies Auxiliary for their hard work in raising these funds and for volunteering their time to the Society. This is a truly amazing fundraising effort and will directly benefit people living with MS in the south-east Queensland region.

This cheeky appeal does have a strong message behind it; to get the country talking about MS and to seek donations to help find a cure. Everyone can participate by making a donation, holding a ‘Kiss Goodbye to MS’ event or by buying badges and stickers. For more information head to: Website: www.kissgoodbyetoms.org Facebook: www.facebook.com/KissgoodbyetoMS Twitter:

twitter.com/#!/KISSGOODBYETOMS

For updates on the MS Awareness Month activities in Queensland visit our website www.msqld.org

MS DAY

Mark Wednesday 30 May in your diary This year promises to be the biggest and most successful World MS Day to date with the theme ‘Living with MS – 1000 faces of MS’ where people living with MS will be at the heart of the awareness campaign. The theme aims to increase public awareness of the many challenges that people with MS face daily, and the changes that help people with MS to live fulfilling lives after diagnosis.

MS LIFE – AUTUMN 2012 2012

30 MAY 2012

We encourage you to host a World MS Day function during May in your local area and encourage our support groups to engage with their local community and educate people about MS and its impacts on basic necessities people often take for granted. For the latest updates on World MS Day globally visit www.worldmsday.org For updates on World MS Day activities in Queensland visit our website www.msqld.org

Research informs us that maintaining regular exercise where possible is an essential tool in improving the quality of life for people living with MS. This is particularly true for people for whom exercise was not a part of their life prior to the diagnosis of MS. We are holding an After Hours Exercise Class at the Dutton Park Clinic for people who are in the early stages of living with MS offering yoga, pilates and aquatic exercise. This service is available to people who have no limitations on their ability to physically perform their day-to-day activities apart from the possible need to manage the effects of fatigue and a busy life and are unable to attend the Dutton Park Clinic during the hours of 8am to 4pm, Monday to Friday.

The goals of these sessions are: 1. To provide you with the opportunity to participate in appropriate, beneficial and safe physical activities; 2. To determine what exercise type is right for you; 3. To learn about your individual requirements for exercise and to be able to communicate your specific needs to an exercise instructor in the community; and 4. To assist you to gain the knowledge and confidence to participate in these opportunities in your local community. For further information please contact Natalie O’Donohue, Manager Physiotherapy on 07 3840 0841 Monday to Friday 8am to 4pm or email natalie.odonohue@msqld.org.au

Maximum numbers apply, so be quick to register your interest.

MS LIFE – AUTUMN 2012

WORLD

A young mum’s journey with MS

I was living in England in 2003 at the age of 22 when I experienced my first symptoms of MS, although I wasn’t diagnosed until five years later. As a runner, at first I had pins and needles in my feet for months and then felt numbness all up my legs and part of my back. I eventually had an MRI scan, which showed inflammation of the spinal cord which was probably caused by a virus, however nothing further was done. I continued to live an active and healthy life and just hoped the pins and needles wouldn’t happen again. I became a school teacher and travelled to India and South Africa to teach returning to the UK and America to run the London and New York Marathons and several half marathons. During this time I also visited Australia to see my brother, which is where I met and fell in love with not only the country, but my husband-to-be Ben. It was then that I decided that I wanted to immigrate to Australia. In 2007 my permanent residency was approved and I moved to the Gold Coast. I felt great.

MS LIFE – AUTUMN 2012 2012

That was until July 2007 when I was running along the beach at Surfers Paradise and started to feel a lot of tingling in my legs and an ‘electric shock’ feeling in my feet. After several doctors’ appointments I was sent for an MRI in September 2008 and that is a day I will never forget. It was MS. They were two letters I had never uttered in my life, but in a blink of an eye they became the

centre of my world and changed my life. At first I was relieved that they had found a reason for my symptoms, but incredibly worried about what lay ahead. It was the unknown that scared my husband and me the most, the not knowing of how my MS would progress. I read as much as I possibly could about the disease; I found the MS Society’s website a great help to me and I signed up as a person recently diagnosed. I found reading about other people’s experiences and gaining knowledge about MS made me feel less alone and more positive that I still had a wonderful future ahead and could still achieve my goals. I told my parents about my diagnosis via Skype to England; they were in shock. Then I told my close friends and family and I realised how lucky I was to have such wonderful and supportive people around me. I continued to work as a teacher, taking

I found reading about other people’s experiences and gaining knowledge about MS made me feel less alone and more positive that I still had a wonderful future ahead and could still achieve my goals. no time off. I wanted to continue my life and the job I love. I told my employer about my MS and they were also very supportive.

and I walked the MS Moonlight Walk and I found it overwhelming to be surrounded by so many people walking to raise money for one thing…people with MS. As I walked, I looked around and wondered who had MS and how they were feeling. It was a great event and it made me feel connected to other people who were going through the same experiences as me. Ben and I then married and after some difficulties had a baby, a boy, Archie, who is the light of my life. I have loved every minute of motherhood and now he’s nearly two. Luckily I continue to be free of many of my symptoms of MS. I firmly believe that keeping healthy, happy and positive enables me to live a full life and achieve my dreams, despite having MS. Over the years I have raised money for the MS Society through fun runs and walks and will continue to do so. Even though I don’t need the support at the moment, there may come a time that I do and I want the MS Society to be there for me. I read once in this magazine, MS Life, about a lady with MS who said ‘I have MS, but MS doesn’t have me.’ I find this incredibly inspiring and every time I run up a tough hill I repeat this phrase over and over again. I have kept that phrase close to my heart and I hope by sharing my journey with you, you can take a phrase or two away from my story. Louisa

When I saw my neurologist I told him my soon-to-be husband and I wanted a baby so he advised me not to go on any treatments. Instead he looked me in the eye and kindly said that we should be happy, live our lives and have a family, and not to go back to see him for 10 years, unless of course I needed to. Remaining positive and continuing my love for running, I was looking for ways to help support others living with MS. In 2008 my family

Louisa and with Ahusband Be n rchie

MS LIFE – AUTUMN 2012

A YOUNG MUM’S JOURNEY WITH MS

Meet our RSC team Townsville As you may know we appointed a Regional Service Coordinator last year to support clients living in North and Far North Queensland. This new service providing a staff member ‘on the ground’ has been of great benefit to North and Far North Queensland clients, rather than the service being delivered from Brisbane. It has also enabled us to give clients more opportunity to access the MS Society’s services and speak to staff with local knowledge of the region. Graciously, our Regional Service Coordinator for North and Far North Queensland has been working for the MS Society from her home to date. We are now excited to share the news that we have leased an office in the centre of Townsville.

MS LIFE – AUTUMN 2012

NE W

This year we will be utilising the new office to its full potential and will roll out a range of locally based MS education sessions including those for the newly diagnosed, and people both living and working with MS.

Some of the funding for the new Townsville office, which opened last month, has come from two grants; through the Breakwater Island Casino Community Benefit Fund and the John Villiers Trust. These grants have enabled the MS Society to furnish the office and equip the Regional Service Coordinator with a computer, desk and phone. The Townsville office also has a meeting room suitable for MS Support Groups to meet and for us to hold education and information sessions for clients and local service providers.

For more information on these sessions visit our website www.msqld.org or call the InfoLine on 1800 177 591.

This year World MS Day on 30 May will focus on how people all around the world live with MS. To celebrate all the ways people live positively with MS with the support of their loved ones we will again be hosting the MS Heroes awards. Is your carer, friend, employer or family member doing great things for you and your MS to help you live positively? Why not nominate them today for an MS Heroes award. This is a way you can thank them for all that they have done for you in helping you live with MS. Simply send your details, their details and why they deserve to be recognised as an MS Hero for helping you live positively with your MS to awards@msqld.org.au If you have any questions, please call the MS Heroes awards team on 07 3840 0825.

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This year we are introducing a new set of workshops called ‘Working with MS’ all across Queensland. This workshop is most suited to people living with MS who are currently employed. It aims to provide you with the information you need to make informed decisions about employment while living with MS. This two and a half hour workshop explores managing MS in the workplace. Participants will gain information on your rights and responsibilities at work, services to support you in the workplace as well as superannuation, insurance and finance matters.

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Craig R

owley

Sharyn Shields

Recently there have been a few staff changes to our Regional Service Coordination team in Queensland including an expansion of this service to North Queensland. What better time than now to re-introduce you to this service and highlight ways in which the team can support people living with MS. A Regional Service Coordinator (RSC) is a central contact for people living with MS at any point of need following diagnosis. As a backup service to the MS Nurse and InfoLine, people with MS and/or their family or carers can be referred to their local Regional Service Coordinator. At this point we encourage registration as a client of MS Queensland. This enables you to have full access to our services – many funded through Department of Communities. What do they do?

Nominations close Friday 27 April 2012.

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A series of workshops will be held throughout Queensland in 2012. For further information please contact our InfoLine on 1800 177 591.

Each Regional Service Coordinator is well equipped to support people with MS and/or their families and carers with a diverse range of issues that may affect their lives. They do this firstly through assisting people to identify their current needs. This may include information, symptom management, equipment or aids, emotional or financial support, respite, support in the workplace or community service information. Once both the person with MS and the RSC understand what would be helpful, the RSC will work alongside the person with MS to facilitate positive outcomes. This could mean a referral to a physiotherapist for an exercise program, guidance on fatigue management, advice on services that provide in-home support, support in the workplace, or assistance with acquiring medical equipment or aids. Each RSC has comprehensive knowledge of MS and services in the community to support people with MS. This is their forte. The challenges One of the challenges faced by the RSC team on a daily basis is balancing the demand for this valued service with existing resources. Six staff are employed throughout the state of Queensland with over 2,000 clients currently registered with MS Queensland. To best meet our client’s needs, the RSC is available on an ‘as needs’ basis. We

l aywel

Susan

Tas S

Thinee

orrie

Jenny C

work to prioritise our resources while responding to all clients who contact us. Some people with MS need little contact, others require information and support at different points throughout their life. Another challenge we face is our capacity to continue to fund this vital service. You may not be aware, but the vast majority of funding for the RSC service comes from our events and fundraising activities, and not from Government funding. Where are they based? The RSCs are based in six regions across Queensland and have extensive knowledge of services available to people with MS in their local community. Refer to the map below. How do I contact the RSC? If you are in need of support, information or could benefit from this service the first point of contact throughout the state is the InfoLine on 1800 177 591. The MS Queensland website www.msqld.org is also a great way to gather information about the services and resources we can provide.

Susan Thinee North and Far North Queensland

Janice Wheeler Ipswich, Toowoomba and South-Western Queensland

Jenny Corrie Brisbane North

Tas Saywell Sunshine Coast and Central Queensland

Craig Rowley Brisbane South Sharyn Shields Logan City and the Gold Coast

MS LIFE – AUTUMN 2012

call for nominations

MS Office for

ONE MAN’S STRUGGLE AGAINST THE ODDS Being diagnosed with MS at the young age of 21 is hard for anyone to take. It was at this crossroads in life that Heyward Robertson decided to live life to the full and make the most of what he had, which has seen him endure a 40-year journey living with MS.

Heyward is unable to see well and his only way to read books is to listen to them on CD. Any profits Heyward makes from the sale of his book will go towards making the book available in audio format for those who are vision or physically impaired.

Now at the age of 62, he has recently launched his first book of short, funny and witty stories called ‘Riding the Rough Road’, a book about his life in the bush and overcoming the challenges of living with MS.

About the Author

Heyward started writing his short stories more than 15 years ago using his voice-activated computer.

Along with his four siblings and mum and dad, Heyward moved to his family property, near Glenmorgan, when he was 11 years old. Heyward spent his high school years at boarding school at Toowoomba Grammar School and loved going home at the end of each term to spend holidays working on the land.

MS LIFE – AUTUMN 2012

After finishing school, he was encouraged to head off and work for other employers to learn as much as possible about jackarooing before coming home to work on his family property.

“Riding the Rough Road was an opportunity to share what I’d learnt during various episodes of my life and share knowledge of how we lived and worked, which is very different to how it’s done these days in the bush.”

At 21, Heyward stood strong, broad shouldered, tall and handsome. He thought himself indestructible and was living his childhood dream as a jackaroo on the land.

The short stories in the book are about his life, the unwavering love of his family, his insatiable love of the bush, his own personal battles and his struggle for life itself.

He had returned home from jackarooing in the Carnarvons, to take up the reins, with his Dad, on the family property. He had a dream to get married and raise a family.

He is a man who continued to ride the corrugations of life with his “never say die” attitude. He is a man who defied all odds; who continued to maintain his sense of humour and his passionate zest for life.

There has been a lot of media and community discussion recently about the new neurologist heading to Far North Queensland, the only one in the region. The region has experienced months without this vital service which has meant Cairns patients, both public and private, were forced to travel to Townsville or Brisbane for basic assessments as well as treatment for MS.

Advised by medical authorities to start limiting his life, he instead chose to live expansively, daring to enter fields about which he had no knowledge, or experience or expertise. Heyward worked in property development; horse breeding; cattle breeding; and went on to design, build and manage the well-known Overlander Motel in Roma. Now living in Toowoomba, assisted by his loving family, Heyward’s desire to live life to the full leaves the most able-bodied of us breathless.

The MS Society feels that the number of neurologists in the public health system in Queensland is completely inadequate for not only the accessibility of people with MS, but all other progressive neurological diseases. Particularly in rural and regional areas, the numbers are far too low. For example in Far North Queensland at least 1,000 patients are on the waiting list for the new neurologist. People travel in some cases several hours to reach a regional centre that has a neurologist. Of course, for people with MS, this exacerbates some of their MS symptoms. If you are on the Far North Queensland waiting list or have a story to share from the issues discussed in this article please contact us at mslife@msqld.org.au

For more information about Riding the Rough Road visit www.heywardrobertson.com

Can you help to change the future of MS today? The Wesley Research Institute Clinical Trials Centre is taking part in an international study to evaluate a new medication to prevent relapse in patients with relapsing-remitting MS. You may be suitable to participate if you are: aged between 18 and 55 years diagnosed with relapsing-remitting MS able to attend monthly visits to The Wesley Research Institute Clinical Trials Centre in Brisbane over a period of 3 years Neurological review, study treatment and study related medical care are provided at no cost to participants. If you are interested in obtaining additional information on how to qualify for this study, please contact The Clinical Trials Centre on 07 3721 1527.

The Wesley Research Institute Clinical Trials Centre Level MB2 The Wesley Hospital 451 Coronation Drive Auchenflower Q 4066 Australia T 61 7 3721 1523 F 61 7 3721 1594 E clinicaltrials@wesleyresearch.com.au www.wesleyresearch.org.au

MS LIFE – AUTUMN 2012

“Gone are the days of the great cattle drives, the long lonely stock routes, packhorses, mustering camps, tough and rugged stockmen and equally rugged, tough horses.”

New neurologist for Far North Queensland

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“It’s been a very slow process, however I originally went about capturing the short stories for my nephews and nieces to satisfy their unquenchable curiosity about my life in the ‘old days’, when I was a boy,” he said.

“I choose to live.” These were the words Heyward Robertson spoke at his lowest point after being diagnosed with MS.

Riding the Rough Road is a collection of short stories describing the rough and dusty roads, towns and characters that shaped the boy who became a man.

BRISSIE to the TURNS

Brisbane’s biggest charity bike ride is on again on Sunday 24 June. Brissie to the Bay celebrates its 21st birthday this year and we are hoping to attract the largest number of participants ever, all to raise vital funds for people living with MS. When the Brissie to the Bay ride launched in 1992, a modest 500 participants took part. How it’s grown – last year, more than 4,600 riders descended on South Brisbane and completed one of the four distances. This year, we expect more than 5,000 participants to ride for MS and hope to raise $700,000. 4 rode f,600+ ride or MS rs last ye ar

MS LIFE – AUTUMN 2012

The ride’s endurance 100km course and the 50km route begins in South Brisbane and follows a path to Wynnum in the city’s east, before returning to the starting point. But it’s not just serious cyclists who take part in Brissie to the Bay – the 10km route is a favourite with families, and the 25km distance provides a realistic challenge for new riders. If you know someone who has a bike and likes to ride, help us spread the word and ask them to ride in this year’s Brissie to the Bay for MS. It’s a great family day out and all in support of MS. To register or for more information visit www.brissietothebay.com.au

Know s

swim?

Big Dinner Party success

in the Far North

Yes we’ve brought the ‘dinner party’ back.

The MS Swimathon made its maiden voyage to Redcliffe and cruised into the Gold Coast for a second time in March this year, but April is Far North Queensland’s time to dive in for a good cause!

In a world where MasterChef and cooking shows have ruled our TVs, we recently revamped the ‘dinner party’ craze and created a fun new way for people to dine at home. In March we invited everyone to support people living with MS by hosting a dinner party in their own home. It’s a simple idea – you invite friends over for a nice dinner and guests donate the money they would have spent going out to dinner to the MS Society. Party hosts really took it upon themselves to cook up a storm; from their favourite recipes and mouthwatering desserts, the dinner party menus were all very creative! Gary Allen, a young father and person living with MS, was one of the first to host his own dinner party. “Hosting my dinner party for MS was a fun way to get my friends and family together, show off my cooking skills and raise money for such a good cause,” Gary said. “It was great to show my guests that they were making a difference, no matter how big or small their donation was,” he said. Many donations are still coming in and we’re hopeful of reaching our target this year of $100,000. All money raised by Big Dinner Party this year will help fund vital research into a cure for MS and support services here in Queensland. For more information on Big Dinner Party visit www.bigdinnerparty.com.au – or if you would like to still host a dinner party, it’s never too late!

With five swims programmed across our Sunshine State this year, we are very excited to not only bring this event back to Cairns but introduce it to the people of Townsville – encouraging hundreds of locals to support us by swimming, sponsoring or showing up on the day to cheer on their friends! This team-relay style event in the pool is great for everyone to get involved! Cairns will roll out a 24 hour swim from 12 noon on April 21 to 12 noon on April 22, with the Lions Clubs of Cairns and TAS Aquatic Centre at the helm. Townsville will produce a 12 hour swim from 8am to 8pm on Saturday 28 April with the support of the Kirwan Business Lions Club and the Tobruk Pool. Australian swimming champion and new Dad, Geoff Huegill, has also signed on for a second year as the official MS Swimathon Ambassador; lending his support to help us reach our goal of raising more than $200,000 for Queenslanders living with MS. Do you live in the Cairns or Townsville area? Please support this event by swimming, sponsoring or showing up on the day to cheer on your friends! Go to www.MSswimathon.com.au to register or to sponsor a team today. For more information please call Amy Rymer on 07 3840 0822.

MS LIFE – AUTUMN 2012

BAY

ikes to

who l omeone

Clinical trials Living positively story announced for secondary progressive MS LUCKY...

The beta interferon disease modifying drug therapies (Avonex, Rebif, Betaferon, Extavia) can be of benefit in secondary progressive MS if disabling relapses are regular. However, it is recommended that treatment is stopped if a person no longer experiences relapses. Natalizumab (Tysabri) is currently given to people in the UK and around the world who have highly active relapsing remitting MS and have failed to respond to beta interferon or have rapidly evolving severe RRMS. Biogen have announced a UK trial to test whether Tysabri will stop the inflammation in the central nervous system that results in nerve damage and help to slow down disease progression. The Ascend trial will enrol 850 people with secondary progressive MS who have not had any prior Tysabri treatment. Participants will be given Tysabri or a placebo every four weeks for 96 weeks. This study is expected to finish in December 2014.

How can you

HELP

Last year Mayor of Ipswich Paul Pisasale shared some great insight into how he lives positively with MS. This led us to asking you to share with us your stories of how you live positively with MS to help provide further inspiration and support to others. We received an overwhelming response and the stories were all worthy of being a winner in their own right. But there had to be one recipient of the opportunity to have lunch with Mayor Pisasale and MS Queensland’s Advocacy Manager Natalie Walsh, proudly donated by Gambaro’s Seafood Restaurant in Caxton Street, Brisbane.

e v a h andfun?

Here are some easy ideas to get you started: • run a raffle at work or a ‘dress in red for MS’ day • hold a fun golf day for MS • host a morning tea at work or with friends for MS • i n lieu of birthday presents ask for donations to MS Queensland • organise a stall at the local markets for MS

It’s simple and fun and you will be making a difference to people living with MS. To find out how give Julie a call on 07 3840 0887 or email julie.hanlon@msqld.org.au

C o m

MS LIFE – AUTUMN 2012

fundraise for y it MS n u

We are happy to announce, the recipient of the 2011 ‘Living Positively with MS’ story is Sandy with her n e story titled ‘Lucky’. The judging d l o ual ‘Gr MS n n panel felt it was overwhelmingly a o s Bay’ raffle f y e v r ’ inspirational and showed He riginals O Want to help other people living with MS and have fun great resolution upon at the same time? receiving her diagnosis of MS and how she has Why not organise a fundraiser for MS this May during come to terms with MS Awareness Month. change in her life. The judges felt it was an important story for other newly diagnosed clients and illustrated the importance of seeking and receiving support with valuable examples provided that others can apply to their daily life. Here is her story…

xiety, dread ing months filled with an elm wh er ov ly dib re inc d weakness Two why I have numbness an was diagnosed with MS. t, I ho ce t ge sin I y ths wh on m d, o tire tw “It’s been why I’ve been so I know what is wrong, y vision is blurry. and finally relief. At last y I forget things, why m wh , ce lan ba y m e los I osis was in my limbs, why d imaging me, the diagn an e m of t ou od blo s into me, taking S doesn’t mean my ctors finished pushing pin rtantly explained that M po im t os m t bu is, os gn I am lucky. Once the do t. MS just means dia disease and its treatmen tient and explained my pa the re d an we rst rs de cto un do e e m d Th clear. this, helpe MS Society reinforced life is over. Visits from the cted. pe ex I le differently to what – things like my life will be lived a litt many things for granted so en tak ve ha I st pa opping, the to visit friends, going sh be considered a gift. In r ca uld y co m S g M g ivin dr ttin lf, ge yse ys, m en you sing In some wa e. Simple things, but wh ng out the washing, dres m ha na d y an m ir g ha itin y wr m s, sh ay wa being able to vance, become bering friends’ birthd , you have to plan in ad ’s day, working, remem do n ca u yo at wh it lim s picnicking on a summer ptom rk colleagues. complicated. When sym ur family, friends and wo yo in have MS it’s a bit more are u yo ky luc w u realise just ho d doing for others, more organised. And yo to be the one giving an d like I sly iou ev pr – rs othe This has been now a gift I can give to pt their help gracefully. is ce e ac m lp to he w to ho rs rn he lea ot to had suggest Allowing shows in the way they to give back, and I have re like ca rs eir he ot Th t e. tha lov I ise se gn now I reco er before to tho ought me closer than ev demoralising. a great equaliser, and br limitations, without being nt rre cu y m ate od m m ll work activities that acco can I blithely assume I wi r ge lon o N is. os gn dia came with the MS luation of my life which va -e re the is ase work early. gift r he ot An r that I may need to ce ide ns co to ed ne I – till I’m 65 then retire t count? Whatever n I make each momen ca w ho , life rk wo ter a shor y new motto, out the fact that if I have t count has become m en om m It also made me think ab ch ea ing ak M ssionate about. small, should be work I do I should be pa rience, no matter how pe ex w ne ch Ea ! ing yth socialising with ever dinner, visits with family, not just in work, but in hy alt he a ok co s, bu lk to the valued. Being able to wa gifts! are s ng thi friends – all these more. e me appreciate it all the ad m s ha S M g vin ha t Life is so short, bu ict how my MS fluctuate, that I can’t pred ll wi s m pto sym y m so make every I know know this – life is a gift, do I t bu ss, re og pr or it will rem moment count.”

In yet another gracious gesture by Mayor Pisasale, he has announced that he will be hosting a morning tea on World MS Day this year for everyone who sent in their story. If you have submitted a ‘Living Positively with MS’ story we will be in touch with the event details. Thank you to everyone who took the time to share your inspirational stories. We will be sharing a positive story a month on our website www.msqld.org so make sure you check it regularly.

MS LIFE – AUTUMN 2012

Many people initially diagnosed with relapsing remitting MS (RRMS) find that over time the frequency of relapses decrease but disability gradually increases. This is known as secondary progressive MS.

MS questions with Tim LET’S TALK ABOUT CLIENT INFORMATION AND EDUCATION – HOW TO SELF MANAGE AND OTHER COMPLEX MS TOPICS... WITH NATALIE

As discussed last year, 2012 is the year when foundations for the National Disability Insurance Scheme (NDIS) will be laid. This is a very exciting time, one which will affect all Australians – particularly the 20 percent of Australians who are living with a disability.

Make yourself count for the NDIS and sign the petition via the Every Australian Counts website

MS LIFE – AUTUMN 2012

As I am sure you are aware there is bipartisan support for a NDIS; however budget constraints are mentioned as the hurdle that must be overcome to have the NDIS put in place. This is why we must come together to ensure this change is made and for all politicians and the wider community to understand the social and economic benefits that will result from the NDIS being put in place as outlined in the Productivity Commission Report. Clear objectives that have been identified to make the NDIS real in 2012, are: • to have the National Disability Insurance Agency (NDIA), the body that will run the NDIS, once legislated; • to have the NDIS launch sites announced; and • to generate funding to make both of these things happen.

With so much new information being discussed and actioned we really need to keep up-to-date with news as it comes to hand. I will be sharing information with MS Support Groups and of course providing a monthly update on our website www.msqld.org on the NDIS. There is much you can do to help in building support for issues that affect you and others living with MS. To ensure the NDIS becomes a reality visit www.everyaustraliancounts.org.au and see how you can help – it can be as simple as circulating petitions to gain further support for the NDIS and actively keeping up-to-date with new information.

These workshops are built around principles of ‘chronic disease self

All facets of people’s lives are a focus of the National Disability Insurance Scheme and one in particular which we have been working strongly on is employment for people living with MS and other chronic illnesses. This year we are planning to host some Regional Forums to highlight employment opportunities in regional areas of Australia. We look forward to providing more details post the State election.

We have been getting a lot of requests about more difficult MS symptoms and topics and cognition (thinking and memory) is high on the request list. We will be working with an Occupational Therapist to deliver a number of these sessions this year targeting this area. In addition, we are expanding the pilot Fatigue Management workshop

As you can see we have a big year planned and will be holding lots of different seminars and sessions right across Queensland. We welcome feedback at any session we undertake. Let us know if we are meeting your needs.

Tim Have a question to ask Tim? Email us at mslife@msqld.org.au

✓ Carbon fibre technology

✓ NOIR 3kg frame

✓ support cardiovascular functions ✓ warm legs with less or no pain ✓ ease spasms increase mobility MOTOmed... passive/active exercise. Assist in your own rehab.

If I can assist with any queries, please do not hesitate to contact me via email at natalie.walsh@msqld.org.au or phone 07 3840 0823. I look forward to hearing from you.

www.abilityinmotion.com.au admin@abilityinmotion.com.au Natalie

we ran in 2011. It will be taking place in four regions this year with more to come. Our RSC team is running these multi-day workshops. Another area we are targeting will be a series of employment workshops with our Community Services Manager and support from the Maurice Blackburn law firm.

PHONE 1800 994 408

Fax 07 5335 1604

A.I.M - to brIng InnovAtIon to QueenslAnders

MS LIFE – AUTUMN 2012

What a great way to start the year with the judging of the ‘Living Positively with MS’ client contributions. We are sure you will feel as inspired and delighted with the stories as we have. They share in each person’s own unique way, how they live positively with MS. We will share a new story every month this year via our website for you to read.

MS is unfortunately a long term chronic condition. This year MS Queensland’s focus is on supporting our clients with tools and strategies for managing their MS the way they want to! Our focus for our education programs will be on ‘self management’. Now this is a term that does not always sit well with many people – but it is not about simply giving people with MS information and giving you the tools to ‘self manage’. These workshops are about giving people options and then knowing when and how to seek support when or if you need it. They are designed to help people look at their own lifestyle and make choices and changes to support them living with MS.

management’; balancing information about the disease you live with, with tools you can use everyday to take control and ownership of your MS. At the sessions we look at “medical” management and compare that with self-management; ways to improve communication and understanding with your doctors and other health care professionals you may work with; and making a healthy diet, mental and physical exercise a part of your everyday life.

MS resources To borrow books or for assistance in accessing online resources, please contact the MS Library in Blackburn, Victoria on (03) 9845 2809 or library@msaustralia.org.au

eBOOK Fighting fatigue in multiple sclerosis: Practical ways to create new habits and increase your energy

by Lowenstein, Nancy A., Demos Health

Fatigue is one of the most common symptoms of MS and can have a huge impact on the quality of life of people with MS and their families. The goal of this book is to help individuals with MS learn techniques to assist them in having more energy to do the activities they enjoy. This book emphasises the importance of including family, friends and colleagues in fatigue management strategies. The author of this book, Nancy Lowenstein, is an occupational therapist and has first-hand knowledge of the effects of MS through her work at the MS Care Center at Mount Auburn Hospital in the US.

MS LIFE – AUTUMN 2012

www.e-bility.com/travel/ Multiple sclerosis: Answers at your fingertips 2nd edition By Rog, David, Burgess, Megan, Mottershead, John, Talbot Paul, Class Publishing

Written by experts in the field, this comprehensive book about MS answers many of the common questions people with MS have. With over 300 questions asked by people with MS it covers topics such as what is MS, how is MS treated, symptom management and relationships. A comprehensive chapter on complementary and alternative medicines discusses a number of different therapies and their effectiveness. There is also a section on disease-modifying therapies and new treatments. Other topics discussed include: • Pregnancy and child birth • Relationships • Pain • Mobility • Fatigue • Living with MS

Access travel – Australia This section of e-Bility’s website is currently being redeveloped but all Access travel information, guides and wheelchair accessible accommodation directories can still be viewed using the link above. This website provides travel information for seniors and people with disabilities. It is a gateway to service providers and offers an overview of accessibility features offered by providers, based on information offered by the service providers and/or people with disabilities and carers who have recommended the service. The website includes these sections: • Accessible accommodation database • Articles on access travel • State access travel guides and directories • National access travel guides and directories • Organised tours and accessible group holidays • Special needs travel agents • Travel insurers covering pre-exiting medical conditions • Travel destinations outside Australia

Contents include: • Busy minds, busy lives, and busy bodies • A look at your daily routine This well written and easy to read • It’s all so important! What can I book would be of interest to people This site will be of interest to people change? with MS and their families. with MS who are planning a holiday. • Ways to grab some rejuvenation • Incorporating exercise into your NICAN daily routine www.nican.com.au • Fitting it all in • Do I have to go upstairs again? NICAN is a not for profit organisation that • Ways to simplify activities provides information on recreation, tourism sport and tasks and the arts for people with a disability. The aim of • How to make changes stick the organisation is to provide links between people, places and resources that improve access to recreation Provid This book will be of in experiences for people with disabilities. accessg holiday a interest to people with ible de dvice f stinatio or MS, their families and This website provides links to information on a wide range ns health professionals of recreation and travel resources, including information on travel with an interest in destinations, activities and services for people with a disability. A search facility makes this website easy to use, allowing you to search for information by state and activity. this area.

It is great to be back this year and part of the MS community. I have already caught up with many friends via Skype and attended meetings and am looking forward to a big year ahead! We have kicked off the year in a big way with the addition of the Logan MS Support Group. They meet on the fourth Monday of the month at the Marsden Library. If you would like any further information about this please contact Debbie Grimshaw on 0434 588 713 or email her on dgr459@bigpond.com Our Skype Community have met online and shared activity that is taking part in different areas across our beautiful State. We were also joined by Natalie Walsh, Advocacy Manager who shared news particularly regarding the NDIS (National Disability Insurance Scheme). I am sure we have all heard about the NDIS however with so much to understand I really encourage you to read Natalie’s updates and give your support and feedback where needed. I was honoured to represent people with MS as a judge on the ‘Living Positively with MS’ judging panel. Each story that was sent in will be shared with the MS community

and I challenge anyone reading about the lives of any of these stoic MSers, to not be moved and profoundly touched by their tenacity and determination. It really was a task to reach the final conclusion but was absolutely reached through heartfelt deliberation by all the judges. Our wonderful MS Ambassador, Paul Pisasale, a man who champions living positively with MS, has so kindly offered everyone that provided their story to attend a celebration morning tea on World MS Day. What a fantastic way to celebrate this important day in our MS calendar. You may have seen the exciting events calendar for 2012 – there are really great activities and events happening across the State and I really hope you are able to attend. New MS Support Group for Logan When: Fourth Monday of the month Time: 9:30am to 11:30am Upcoming: 23 April and 28 May Venue: Marsden Library 35 Chambers Flat Road, Marsden Contact: Debbie Grimshaw, 0434 588 713 or dgr459@bigpond.com

A number of MS Support Group meetings are detailed on the homepage calendar of our website at www.msqld.org

MS LIFE – AUTUMN 2012

eBOOK

From the Chairperson of PwMS Support Groups, Jenni

MONTH OF MARCH

MARCH 1 – APRIL 30

MARCH 19 – MAY 30

APRIL 21 – APRIL 22

Host a dinner party to help fight MS

MS Heroes Awards nomination period

MS Black Edition Lottery

MS Swimathon Cairns, 24hrs

www.BigDinnerParty.com.au

www.msqld.org

www.msblackeditionlottery. com.au

www.MSswimathon.com.au

APRIL 28

MONTH OF MAY

MAY 30

JUNE 24

30 MAY 2012

MS Swimathon Townsville, 12hrs

MS Awareness Month

World MS Day: Living with MS

Brissie to the Bay bike ride

www.MSswimathon.com.au

www.kissgoodbyetoms.org

www.worldmsday.org

www.brissietothebay.com.au

MONTH OF AUGUST

OCTOBER 19

NOVEMBER

MS Readathon

MS Moonlight Walk

MS Swimathon Jindalee

www.msreadathon.org.au

www.moonlightwalk.com.au

www.MSswimathon.com.au

For more information contact the MS Society on 07 3840 0888 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 Multiple Sclerosis Society of Queensland (MS Australia - QLD). MS Australia - QLD 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 Australia - QLD 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 Australia - QLD 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 Australia - QLD or the relevant copyright owner. © 2012 Advertising Disclaimer: Advertisements are provided to assist consumers to locate and purchase suitable products and services. Multiple Sclerosis Society of 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 Multiple Sclerosis Society of Queensland is not liable in the event the product is not satisfactory.