MS Life Spring 2015

MSLIFE. SPRING 2015

MS QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

Veva’s MS journey Finding her balanced life

&

MS Clinics Research Trials Benefits of Strength Training

Paediatric MS Project Pender

Trial Update

Get involved in the

Moonlight Walk Annual Readers Survey

Connecting with MS Queensland If you’d like to keep in touch with MS Queensland’s activities, events and physiotherapy programs please visit our: WEB msqld.org.au FACEBOOK facebook.com/msqld TWITTER twitter.com/msqld YOU TUBE youtube.com/user/MSAustraliaQ Phone

07 3840 0888

InfoLine 1800 177 59 Fax

07 3840 0813

MS Queensland Locked Bag 370, Coorparoo DC QLD 4151

Do you want to share something with us?

If you would like to share something with the MS community, we’d love to hear it!

It might be your own story about how you are living with MS, or how you’re participating within your community. Perhaps there is an event in your community coming up that is raising funds for MS and you want to get the word out?

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We’re always looking for information that we can share on our website, in newsletters, on Facebook and in our printed publications.

Please email your stories to mslife@msqld.org.au Acknowledgement: We wish to thank Veva Pocock for the use of her image on the cover of this publication. Photo courtesy of Josh Kelly, Jack Harlem®

s r o t i d e e from th Dear readers, We have a spring in our step as we bring you this edition of MS Life, our very first as your editors!

Joining the MS Queensland team in June, we’re excited to be able to bring you recent news and information about research and services within the MS community, while sharing your stories and passion for living positively with MS. This edition we share Veva’s story on how working collaboratively with her employer, local service providers and family, she has been able to achieve her ideal work, life and health balance. Enabling Veva to continue living a positive lifestyle, involvement in family life and employed at a childcare centre, all of which bring her great pleasure (pg 14-15).

2015 was our biggest ever Enerflex MS Brissie to the Bay with $1.55 million raised for MS! We’re proud to announce it was the largest cycling event in Queensland’s history with 9,275 registered riders taking part in the 10, 25, 50 or 100 kilometre courses.

Congratulations and abundant thanks to all who rode, donated, sponsored, volunteered and cheered our riders across the finish line!

Spring will see us dive into the Swimathon season, kicking off at Griffith University on Sunday 18 October and we look forward to joining over 3,000 walkers with lanterns in hand for the Moonlight Walk on Friday 23 October, from beautiful South Bank along the illuminated Kangaroo Point Cliffs, over the Story Bridge, through the Botanic Gardens before crossing the Goodwill Bridge back to South Bank.

We’ve also included a number of other inspirational stories from clients and an educational article contributed by our guest writer and MS Clinic Nurse Kaye Hooper, explaining the role of an MS Clinic in a research trial (pg 10-11). There are updates for those living with MS about the NDIS (pg 7) and on the benefits of strength training (pg 8).

Enjoy this edition of MS Life and Happy Spring.

Kindest regards, Shontiele and Kristy Editors

FROM THE CEO

CONTENTS

“If you want to go fast, go alone. If you want to GO far, go together” African proverb

PAGE 2–3 Share With Us From the Editors From the CEO

At MS Queensland, 'collaboration' is one of our four organisational values. We believe the way to achieve great results is by working together – so that means working collaboratively with governments, supporters and other organisations. It of course also means working in close partnership with people living with MS, their families and carers to help achieve their goals and aspirations along their MS journey. We’re simply better together, I reckon, and we stand a much better chance of succeeding over the long term if we stick together.

So this edition of MS Life is filled with information and stories of collaboration, including our cover story of Veva’s journey to find a balanced lifestyle (pg 14-15); our partnership with MS Clinics and participation in a research trial (pg 10-11); and how you can join with others in the upcoming MS Moonlight Walk (pg 12) in our shared fight against MS!

PAGE 4–5 Phase 1 Clinical Trial Update Client in Focus Person Centred Care: How We Approach Service Delivery MS Clinic at JCU in Townsville PAGE 6–7 Support Group Update Granston Lodge Residents Volunteering in the MS OP Shop NDIS Update Advocacy Update PAGE 8–9 The Benefits of Strength Training with MS MS Swimathon Makes a Splash Help Kiss Goodbye to MS PAGE 10–11 MS Clinics and the Process of Research Trials PAGE 12–13 Moonlight Walk

Brissy to the Bay

MS Cycle Challenge

Seed Funding for New Research Physiothrapy PAGE 14–15 Veva's Balanced Life PAGE 16–17 Questions with Tim: Paediatric MS

Fall Prevention in Multiple Sclerosis

Living Positively with MS PAGE 18–19 Annual Reader Survey

MS Resources

Are You a Member of MS Queensland?

Best wishes, Lincoln, CEO

MS LIFE – SPRING 2015

Last month I had the opportunity of speaking at a leader’s conference about the ups-and-downs of working in partnership with other organisations. My catch-line was 'collaboration is king!' because I truly believe that great things can be achieved by working together with like-minded people. Indeed, I’ve come to the conclusion that nothing of impact in the history of the world has ever happened without collaboration – going to the moon, curing disease, building skyscrapers or even making families!

PAGE 20 Calendar of Events

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PHASE 1:

CLINICAL TRIAL

of Autologous Epstein-Barr virus-specific T cell therapy Update Over the past months, the team at MS Queensland has collaborated with MS Research Australia, the Royal Brisbane and Women’s Hospital, the University of Queensland and the Queensland Institute of Medical Research (QIMR) to support the commencement of a Phase 1 Clinical Trial of Autologous Epstein-Barr virus-specific T cell therapy, led by Professor Michael Pender. MS Queensland is passionate about accelerating understanding and potential treatments for people living with MS and we are particularly excited about the Phase 1 Clinical Trial focus on progressive forms of MS. On this journey we have been fortunate to have Professor Michael Pender speak at numerous presentations to explain first-hand the impact this research could have for people living with MS around

the world. It has been inspiring to also have Gary Allen present alongside Professor Pender to share his personal decision behind undergoing an experimental T-Cell therapy in 2013, which allowed the Phase 1 Clinical Trial to be possible.

Undertaking this work would not be possible without the support of our kind and generous donors and we thank you so very much. We hope this and other potentially ground-breaking research will take us onestep closer to our vision of 'a world free from MS and its devastating impact'.

We look forward to providing further updates once the Phase 1 Clinical Trial has officially commenced.

For more information on MS research news visit www.msra.org.au

Client in Focus Hope sailing journey caught the attention of an already avid sailor.

“It is important to not sit there and think of everything that could potentially go wrong. Instead I focus on short term goals and make sure I live every day to its full potential.”

“I’ve always had a love of sailing. I used to work as a deckhand on a yacht, which is why the Oceans of Hope immediately caught my attention,” said Trevor.

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Trevor Wunsch from Jindalee Trevor Wunsch was diagnosed just 7 months ago, in February 2015 at 36 years of age and has quickly become engaged in the MS community. With no prior knowledge of MS or how it would affect his life, Trevor turned to the MS Queensland website in search of answers. It was there the Sailing Sclerosis Oceans of

Trevor was invited on board as a crew member for the Darwin to Singapore leg of the journey. Joining the team including four other crew members with MS, each with a goal to empower themselves to conquer their individual challenges. We look forward to catching up with Trevor in the next edition of MS Life to hear all about his adventure. Stay tuned!

Want to know more about opportunities to get involved, visit www.msqld.org.au

MS Clinic at JCU in Townsville MS Queensland has partnered with James Cook University (JCU) Townsville in advancing service to people living with MS in North Queensland. This partnership has led to the development of a MS specialist physiotherapy service to meet the needs of individuals with a diagnosis of multiple sclerosis through the university clinic at JCU.

How we approach service delivery MS Queensland approaches the delivery of services to clients from a person-centred care approach. Person-centred care is structured around placing clients at the forefront of their health care. Ensuring individuals retain control of the direction of their treatment by discussing the options available, helping them to make informed decisions and supporting an ongoing partnership between individuals, their families and the services team.

At MS Queensland, services staff build relationships with clients, recognising the value of each individual and investing time to respectfully listen to clients when they meet for the first time, gathering personal information and forming an individualised service plan, considering the client’s needs, goals, views and values.

With every client’s journey and treatment path being different, our staff place a strong emphasis on self-management, by providing clients with MS specialised advice, support, education and training to manage their MS, including monitoring of their own progress towards their goals and promoting ways to prevent, where possible, negative MS related impacts.

MS Queensland can be contacted and provides support via email, phone and face-to-face.

The ability to receive information relevant to individual circumstances is also flexible including individual consultations, access to digital resources on our website, have materials sent out and connect with others in group workshops.

If you have any questions about the work of our Regional Service Coordinators (RSCs) please contact our InfoLine on 1800 177 591 or email info@msqld.org.au

While servicing people with MS, this clinic also increases inter-professional clinical education opportunities for a wide range of health students at JCU. The clinic has already received some encouraging client feedback about the services provided, including Kate Casey’s comments below.

"The JCU MS clinic provided me with a complete assessment of my movement capabilities and physical strength, allowed me to set achievable goals and enabled me to work towards them with the help of highly skilled physio staff. Six weeks later and I'm back riding my bike for the first time in 10 years - it might not be over super long distances right now but it's an amazing start that I can build on and something I thought I'd never be able to do again."

The JCU Inter-professional Clinic is located close to the Townsville Hospital, and includes a chemist, pathology services, supermarket, coffee shop and an x-ray facility with MRI services. Additionally at the clinic, MS clients have access to: • Exercise Physiology • Nurse-led Chronic Condition Coaching Clinic • Psychology based Living Well with MS program • JCU Dental Clinic; and • JCU Health (a GP practice)

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Person Centred Care:

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It is often said that life has its ‘seasons’ as we reflect on our past, or look to the possibilities for our future. But for those of us with MS, we aren’t offered a choice of any season, except to hope that in the near future there will be the discovery of the cause of MS, to change that one long season that came into our lives unexpectedly and allowing for a cure to be discovered.

There are many theories, diets and lifestyles out there and I have seen them all in the past 30 years or so, having tried many personally. But it is the research by the medical fraternity that will eventually have an outcome and by raising funds to support these specialised studies, we all help to bring that discovery date closer.

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Mark your diaries for 23 October and support the Moonlight Walk, one of the most popular events in Brisbane, returning to South Bank with both 5km and 10km distances over and around the Brisbane River.

It can be a leisurely evening walk or just come along, catch up with friends and cheer the walkers over the finish line. There are so many costumes to see with a variety of entertainment and food vendors, the whole family will enjoy the evening.

This year we hope to see more than 3,000 participants carrying the magical lanterns in support of PwMS and raising over $500,000 for research and services.

Blessings, Jenni

Granston Lodge

residents volunteering in the MS Op Shop

In our previous edition, we highlighted some of the wonderful volunteering by our residents from Granston Lodge at the MS Op Shop in Dutton Park. Our residents get a great deal of enjoyment from maintaining links to their community and this is a great way to do it.

Gary Madden has been volunteering in the shop for several months and offers a full day of his time each week. Gary loves the balance of being able to have a chat with fellow volunteers and customers, while having the chance to undertake the varied work tasks involved at the shop.

Leisa Jackson recently started as a volunteer and is really enjoying her time at the shop. With each new week in the store, Leisa is continuing to build friendships with customers and the other volunteers, and is enjoying being able to share her organisation skills.

Our residents enjoy meeting customers and being able to get to know some of the regulars, while customers have the If you would like to opportunity to meet volunteer for us please email some of the clients living volunteer@msqld.org.au or call with MS that the funds our Resourcing Specialist Ellie Lian from their purchase are on 07 38470 0870. For more helping to support. information visit our website at www.msqld.org.au

NDIS UPDATE In the 2015/16 Queensland Budget handed down on Tuesday 14 July 2015, $1.9million was committed for the early launch and introduction to the NDIS of 600 Queenslanders this financial year, at a location still to be confirmed.

The funding of $1.9million will support people with a disability to begin accessing the scheme with 600 people receiving their approved packages before 1 July, next year. Participation and provider readiness activities for the launch of the NDIS will also continue with $6.6million funding provided.

Further commitments for the 2015-16 budget include: • $4.8 million for aids and equipment • Investment of $868 million to help Queenslanders prepare for the NDIS from 2013 through to mid-2019 • Confirmation that Queensland is on track with its preparations to start the NDIS from 1 July 2016,

with all Queenslanders transitioning to the scheme over three years to 30 June 2019 Details are yet to be provided on the Bilateral Agreement between State and Commonwealth Governments. This will include where and when the rollout in Queensland will occur and financial agreements including continuity of supports for current clients who are not eligible for the NDIS. If you have any queries regarding this information, please contact Natalie Walsh on 07 3840 0823 or email natalie.walsh@msqld.org.au

Advocacy Update

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influence change influence

Prior to the recent State Budget being handed down in July, MS Queensland received a positive update from Queensland Treasurer, Hon Curtis Pitt MP, on activities to be undertaken by the Queensland Government. In particular was a continued commitment to working with organisations across the disability sector, the Australian Government and other jurisdictions to ensure the successful rollout of the NDIS in our state from 1 July 2016. electricity prices in Queensland and provide options to promote the long-term interests of electricity consumers.

During this time of dynamic change to the sector, we look forward to continuing to build a strong relationship with the Queensland Government to achieve a stronger voice and more targeted outcomes for our community.

If you have any questions regarding advocacy, please contact Natalie Walsh on 07 3840 0823 or email natalie.walsh@msqld.org.au

MS LIFE – SPRING 2015

Other areas of commitment included: • A collaborative approach across key portfolios such as health, education, transport and housing to ensure an integrated response to the needs of clients and the smooth transition to NDIS. • The strategic and proactive planning of a sustainable housing system to meet the demand for affordable housing and disability support for individuals.

• Prioritising a range of employment initiatives with a focus on providing local solutions for local needs.

• Establishment of a Queensland Productivity Commission to conduct a public inquiry into

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H T G N STRE G N I N I TRA The Benefits

of

WITH MS

The benefits of strength exercises include reducing fatigue, improving the ability to perform daily tasks or work demands, improving and maintaining functional abilities and restoring strength that has been lost due to reduced activity.

Strengthening exercises are safe for people with MS as most symptoms can be managed including heat fatigue and won’t cause exacerbations. It is recommended to have clearance from your GP if starting an exercise program, especially if you have other conditions such as heart disease.

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Strength training can be done in a range of places such as the gym, at home, outdoors or in the pool.

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Strengthening exercises require the muscles to work against resistance, including using weights such as dumbbells or weight machines, body weight, theraband and water resistance.

There are evidence based protocols to follow for the types, intensity and duration of strength training for the MS population, with recommendations to do strength training 2 to 3 times per week, usually as part of a balanced exercise program.

It is important to consult with a physiotherapist or exercise physiologist to have a physical assessment and prescription of appropriate exercises planned together prior to commencing a strength training regime. Regular reviews of your program are also recommended.

For more information on MS exercise options suited to you please contact our Physiotherapy Department on 07 3840 0841 or visit www.msqld.org.au

The 2014/15 Swimathon Season has come to an end with $221,182 being raised by 837 participants over 8 events.

Our overall highest fundraiser was Desiree Thomson from Rockhampton who raised $4,715 for people like herself, living with MS. It was a record breaking season with so many supporters going above and beyond in their attempts to make a difference for people living with MS.

SUPPORTING THE MS CAUSE

ON H T A M I W S MS ASH L P S A S E K MA

Attention has now very much turned to preparing for the 2015/16 Swimathon Season with plans to build on the success of last season. We’ll be kicking off with the Griffith Sport Swimathon on Sunday 18 October at the Griffith University, Mt Gravatt campus. Another very exciting announcement for us is the launch of the inaugural Sunshine Coast Swimathon on Sunday 6 December at the Cotton Tree Aquatic Centre. We’re so excited that those living on

the Sunny Coast can join in on the Swimathon movement!

Keep an eye out on our website msSwimathon.com.au or the MS Swimathon Facebook page for more information as it comes in.

s s i K help

GEOVOEDRBYYMEOTNOTHMOSF THE YEAR

We are happy to announce that MS Queensland has adopted the Kiss Goodbye to MS branding for its community fundraising program. Kiss Goodbye to MS typically peaks in support during May, however under this new partnership between MS Research Australia and MS Queensland, we hope to give Queensland fundraisers a brand that enables them to make the biggest impact possible, contributing to help find a cure, all year round!

So, what does this mean for all of our wonderful supporters and fundraisers?

A brand new Kiss Goodbye to MS website which will inspire, motivate and equip anyone wanting to Kiss Goodbye to MS.

Access to some amazing Kiss Goodbye to MS merchandise to be sold as part of your fundraising and will help liven up your event.

Most importantly, you’ll be contributing directly to research into a cause and cure for MS – these are such important times for research into MS and your support can really help to Kiss Goodbye to MS. Jump on now to www.msqld.org.au/kissgoodbyetoMS to check out the new website and get started on planning your next

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Access to your own online fundraising page where you can record details of your event, post photos, blog and connect through social media.

Supporters can donate online to your event with ease and you’ll be able to better track progress towards your fundraising goal.

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ms clinics and the process

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

Research into MS is important as it leads to new treatments and ultimately a cure for MS. Many MS Clinics are based in tertiary referral university hospitals, working collaboratively with university medical science facilities to conduct research into MS and during a visit to your neurologist you may be asked to participate in a research study.

There are different types of clinical research which may focus on: new treatments; improving quality of care; improving diagnosis of MS; preventing the onset of MS; repairing the damage that has occurred in MS; gathering information on demographics and the long term natural history of MS.

PHASE

1

A principal investigator leads the team of expert medical clinicians and scientists who carry out the research study protocols and monitor the patients’ health.

Medical researchers must adhere to strict guidelines and institutional boards and ethics committees need to approve the study. These committees conduct regular reviews and monitor the trial as it proceeds.

PHASE

2

There are different stages (or Phases) in research studies for potential new MS treatments:

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Research studies can and will be stopped if there are unexpected serious side effects observed during any of the research phases.

PHASE

3

Where a small group of people are tested with the treatment to evaluate the treatment’s safety and side effects

Following on from Phase 1 where a large group of people receive the treatment to see if the treatment is effective

At this stage the study enrols very large groups of people to assess the new treatment’s effectiveness, side effects and monitor for any other risks

Funding for conducting research studies can take considerable time to obtain either through national or state funding agencies, as the costs of research are considerable, often costing millions of dollars.

cess of

trials Who will be included in the each of the studies?

?

Declining to be involved in a research study does not in any way affect your ongoing MS care with your neurologist. There is no expectation that you will need to commit to research studies, because you are attending the MS Clinic. While some people are willing to be in research studies, there are many others who do not wish to participate in research at all. This is a choice that each person can make.

This will depend on what treatment or aspect of MS is being studied – participants may be included (or excluded) on the following factors: age, type of MS, duration of disease, previous treatments, stage of disease or other medical conditions, location to researchers and other factors according to the research protocol.

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What should you ask about the research?

As part of the enrolment process all potential participants will be given written information with clear explanations of the study’s treatment and aims, with details of any known or theoretical risks.

This is important to understand and it is good to have several discussions between the researchers, you and your family. It is a big commitment, studies often last two to three years (or more) with regular monitoring and frequent visits to the hospital. There are some research studies that are of a short duration and may only require filling in questionnaires, or other studies may require a ‘once off’ blood sample. Your consent to be in any study should be given only when you are satisfied you are fully informed.

What if you don’t want to participate?

What happens when it’s over?

At the end of the research study, participants will be informed of the outcome of the study and results will be published in peer reviewed journals so that any new findings are shared with the international community of MS researchers. Regular, routine MS clinical care will be given to participants during the time of the research study and any required ongoing care discussed at the end of the study with individual clients.

Participating in clinical research adds to the growing bank of knowledge about MS, providing valuable insight so that others may benefit in the future from better treatment of MS and ultimately a cure for MS will be found.

We hope that this provides some insight into the process of research trials. If you have any other questions about MS please contact our InfoLine on 1800 177 591 or email info@msqld.org.au

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SUPPORTING THE MS CAUSE

In the early hours of Sunday 21 June, a record breaking 9,000+ riders descended on Musgrave Park for the annual ride to fight MS, making it the largest cycling event in Queensland’s history!

MS Moonlight Walk is only weeks away!

Now’s the time to rally the troops and register a team in the 2015 MS Moonlight Walk! Join the MS community on Friday 23 October for either a 5km or 10km walk along the Brisbane River.

Each walker receives their very own MS lantern before they begin their walk, which will take in the best of beautiful Brisbane including the illuminated Kangaroo Point Cliffs, Story Bridge and lush Botanic Gardens before crossing the Goodwill Bridge and returning to the fun of live music and entertainment at South Bank.

For more information and to register for the event, visit www.MoonlightWalk.com.au

It was a beautiful winter’s day in Brisbane as the riders arrived back at the finish line, but not as beautiful as the hearts of those bike riders who challenged themselves to raise a record breaking $1.55 million for people living with MS. A highlight of this year’s event was the MS Cheer Club, made up of over 100 people living with MS, their friends and family. Cyclists were met at the finish line by these vibrant fans cheering the riders across the finish line.

Our Biggest MS Brissie to the Bay

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June was a busy month for 22 enthusiastic participants, who took part in the MS Cycle Challenge. The MS Cycle Challenge is for those people living with MS who are unable to attend the Brissie to the Bay event, but still want to take part.

Participants used a range of different bikes to get pedalling including MOTOmed trainers, arm cycle bikes, stationery or power assisted bikes both outdoors, or inside at home or the gym. Collectively they travelled over 800kms and raised more than $3,824.

One MS Cycle Challenge participant, Brian Bartlett, covered 150km during the 20 day period on his electric bike in Rockhampton. Brian uses an off grid solar charging system to recharge his electric bike after each ride.

Despite the mercury dropping into the low teens and below during June, that didn’t stop our participants from getting out into the brisk morning air to click up the kms.

Brian’s highlight of the challenge was riding in the pre-dawn twilight, watching the sunrise over the river and even following the still visible moon home on some mornings.

SEED FUNDING FOR NEW RESEARCH In July, Associate Professor Judith Greer from the University of Queensland was awarded a $25,000 incubator grant from MS Research Australia. Incubator grants provide seed funding for the early stages of new research efforts, with the aim of generating the preliminary data needed to support future grant applications.

Associate Professor Greer, has a strong track record in MS research with a range of research interests including improving therapeutics and the influence of genetics in MS. In this project, Associate Professor Greer aims to develop a new model of MS (using mice) which overcomes some of the weaknesses of current MS models.

Existing models have a limited capacity to accurately mimic the human immune response in MS and Associate Professor Greer will address these issues by building the model using cells from people with MS. A better model of MS would be very useful for studying basic questions related to the development of MS and also for testing new therapeutic agents for MS.   For more information about the current incubator grants and other MS research news visit www.msra.org.au

Physiotherapy Mary-Anne Gill recently attended one of the MS Queensland Physiotherapy 10 week exercise groups with Senior Physiotherapist Joy. Mary-Anne experienced a 12% overall improvement including areas of walking backwards, skipping, hopping and running. Mary-Anne reported that she is feeling much more confident in her ability to get out and exercise following the sessions and very happily shared with us that she recently walked 9.7klms in one go!

ASSOCIATE PROFESSOR

Judith Greer Judith Greer is an immunologist with a strong interest in the nervous system and autoimmune diseases affecting the nervous system.

Dr Judith Greer is a graduate of the University of Queensland who completed her PhD on cancer immunology in 1991. She then undertook postdoctoral training at Harvard Medical School in the USA, during which time her interests shifted towards immune responses within the nervous system. She joined the Neuroimmunology Research Unit of the School of Medicine in 1994 and in 2008 moved to the new UQ Centre for Clinical Research.

Her research is directed particularly towards trying to identify brain components that are targetted by the immune system in people with multiple sclerosis, in determining how immune responses within the nervous system relate to the symptoms experienced by people with MS, and in developing new ways to specifically turn off the damaging immune responses in the brain. Much of her work focusses on the most abundant myelin protein, myelin proteolipid protein.

"My main research interest is in multiple sclerosis, an autoimmune disease affecting the central nervous system. I am interested in how we can determine the antigen specificity of the autoimmune response and how we might target this in a specific manner to treat the disease."

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Queensland Researcher Awarded

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Veva’s

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ry

".. MS isn’t going to stop me, and I got on with my life."

Veva works at Cribb Street Childcare Centre, caring for children from as young as six weeks up to five years old. The centre is abuzz with the daily routine of education and care for our next generation, with the squeals of excited kids running around the playground and inquisitively monitoring the garden patch where herbs and vegetables are grown, then used in the daily food prepared – today it’s home-made Sausage Roll day!

“When I was first diagnosed, I went home and started searching the internet. I had never heard of MS and even asked my friend if I was dying. I just remember seeing images of people in wheelchairs, so I switched off the computer and thought, MS isn’t going to stop me, and I got on with my life.

At that time we were living at Redcliffe and prior to the last episode that lead to my diagnosis, my husband and I

were walking every morning along the beach. With MS and the loss of strength in my legs, those beloved beach walks were off the table.

I was determined though to not let MS get to me and found other ways to continue my active lifestyle, switching from beach walks to swimming. Swimming has been a great way to maintain mobility and is a shared interest with my husband that we do together each morning in the warmer months.

Having such a supportive family and employer has been a god-send. Although I can be a bit stubborn at times, I know that they are all there for me and having the support from Bernadette means that I get to continue working and seeing these little faces. I’ve seen many siblings from families grow up here and they even call the centre Veva’s Place. That’s how much they love coming here, and I love being here too!”

Veva is grateful for attending the MS workshop and said it really transformed her thinking about MS. She is very thankful to Bernadette, the best Director she has ever had, and all of her co-workers at Cribb Street Childcare Centre for the ongoing support they provide in the workplace that makes her smile so frequently.

MS LIFE – SPRING 2015

Diagnosed nearly 16 years ago, Veva is the proud mother of four children, grandmother of five very active grandsons and up until last year, was working full time.

Veva’s supportive Director, Bernadette, contacted MS Queensland about a MS workshop as she wanted to learn how to best support Veva in the workplace.

Bernadette asked Veva to attend the workshop with her and they left with a much greater understanding of MS in general, as well as steps to improve Veva’s work and life balance. With the impact of fatigue taking its toll on Veva, this year she has reduced working to three half days, to achieve a more enjoyable work, family and health life balance. Veva now has the motivation and energy to be a more engaged Nanna, spending afternoons cooking or with her husband and grandkids out in the yard while they kick the footy around.

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questions with tim

Paediatric MS The question that led me to write this article is one that I get all the time from our clients and patients – Will my children get MS too? We must always be honest in any answer we give to all questions, but this is a delicate and difficult question to answer.

The reality is that if a parent has MS then their children are unfortunately more likely to get MS than if there is no MS in the immediate family.

But it is still a very low chance. Percentages don’t always mean a great deal in this type of conversation but there is a 99% chance they will not get MS. Most people who live with MS do not have a first degree relative with MS, but some families do.

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While MS is predominately a young adult’s disease, occasionally it is diagnosed in adolescents and children.

Approximately 5% of people living with MS are diagnosed under the age of 18, but many adults who receive a diagnosis in their 20’s or even 30’s may have experienced their first symptoms while they were teenagers.

Diagnosis in children can be very challenging with the early symptoms mimicking many other, more common childhood diseases, including Acute Disseminated Encephalomyelitis (ADEM), which is usually a single

event. Waiting for a possible second relapse is understandably frustrating, and because parents are parents, there are always feelings of guilt or questions as to how they could have prevented it.

We don’t know all the answers yet, but we know that MS is not inherited, is not ‘caught’ and we can’t prevent it.

Supporting those diagnosed with MS at any age, including children or adolescents and their families through their MS journey is something that MS Queensland has been doing for over 50 years and will continue to do so.

Want an MS question answered?

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

Barlow Client Story: Yvonne

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Fall Prevention in Multiple Sclerosis Research shows that up to 60% of people with MS will have experienced a fall in the previous six months. A larger proportion of these falls can lead to injury.

Many of the symptoms experienced in MS, such as poor balance, muscle weakness, visual impairments, altered sensation, spasticity, bladder problems and impaired thinking can contribute to the risk of falls. We know that muscle strength, balance and fitness can be improved with appropriate exercise. A physiotherapist will be able to assess your individual risks and assist you in reducing some of the risks that contribute to falls.

There may be further risks in your home, office and community that can be minimised by making changes to these areas too.

Falls can lead to losing confidence in moving about which will lead to inactivity and avoidance of activities.

Inactivity can result in further loss of muscle strength, reduced fitness and impaired balance.

The Physiotherapy Clinic at Dutton Park is running a Falls Prevention Program aimed at educating people with MS to identify the risk factors that can contribute to a fall and providing help with reducing these risk factors so clients can move about with confidence.

For further information on the Falls Prevention Program, please contact Linda Wilson-Marks from our Physiotherapy department on 07 3840 0841 or email linda.wilson-marks@msqld.org.au

with MS

In 1996, we were going through a hard time with my husband out of the workforce and two young sons, when I started a six week computer course in Toowoomba, travelling nearly an hour each way from our home outside of Clifton. In the fifth week of the course I suffered a bad migraine on the Friday and by Wednesday I had no feeling on my right hand side from head to toe.

After many tests in hospital and three weeks of uncertainty, an MRI confirmed I had MS. How did I cope? One day at a time. I taught myself to write and do everything else with my left hand, did my research and with encouragement from a friend with MS, I visited the MS centre in Brisbane.

Gradually I got feeling back in most of my right side except the lower leg and foot. Although I continue to suffer badly from heat fatigue, with physio, a positive attitude and my Christian faith, I was determined to get the better of this MS and learnt to pace myself and not over do things, something very challenging for an independent person!

I focused on what my body could do, with a goal to enjoy my sons' life experiences with them, seeing them graduate and obtain good jobs. They are now grown men with careers, partners and I have two grandsons!

I’m now 51, living with minor symptoms, working in and studying childcare, actively involved in our local craft group, progress association and more.

MS has given me the opportunity to focus on what is important, what can be delegated, or what can be left until next time.

I focused on what my body could do, with a goal to enjoy my sons'

MS LIFE – SPRING 2015

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By completing this survey you will be helping us to ensure we are delivering a valuable publication to you. As an extra bonus, we have 2 tickets for Draw No.170 of the MS Limited Edition Art Union, with the prize being a Mercedes-AMG C63 S valued at $168,904, to giveaway to one lucky reader who completes the survey by Friday 16 October 2015.

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s e c r u o MS res Edition

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September

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

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

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TO: Hon Secretary MS Queensland Locked Bag 370 Coorparoo DC QLD 4151

Application Date: ____ /____ /____ Phone: (07) 3840 0888 Fax: (07) 3840 0813 Email: mssociety@msqld.org.au

I wish to SUBMIT an application for Membership of MS Queensland.

I wish to RENEW my application for Membership of MS Queensland.

I enclose my subscription for:

Annual Ordinary Membership $33.00 (inc. GST) (1 July – 30 June) Life Membership $330.00 (inc. GST) ? a providing (Life Membership can only be granted following application for Ordinary Membership) eensland ists us in research to find MS Qu er with year, ass memb t $33 a leading edge MS a u jus MY pERSONAl DETAIlS ARE AS fOllOWS: is yo Are and which with us, ion about MS h as MS hip suc Full Name ........................................................................................................ ers ns atio Memb n and educat is. gh publicr website. atio ros ou rm thr scle e Address ........................................................................................................... info eiv on ou t multiple n you rec rce Centre n conten atio cure for atio rm sou rm info Re ........................................................................................................................ ted to ut the info r Online ludes the ack abo We are commit to anyone This inc Insight and ou Postcode ................................................ Phone No ......................................... e feedb . rce t its y positiv Life, MS n resou , MS Life eive ver d magazine le informatio do not restric comes Email ............................................................................................................... use uab we ularly rec We reg ship client-foc vide this val and as such ers only. But this pro mb in MS rt.

Date of Birth .................................................................................................... of our flagcontinuing to sland me d your suppo interest an een who has tion to MS Qu and we nee vices MS port plEASE INDIcATE YOUR INTEREST IN MS QUEENSlAND ser circula stantial cost ns and your sup at a sub publicatioplease show with MS I have MS I just want to support the value the hip then So if you d provides your members 3 you can A family member has MS MS cause slan Queen or renewing a fee of just $3 becoming I know someone with MS Other ........................................ er by joining d today. For might consid rrying about t slan Queen a year, or you 30 to avoid wo strength of MSMY SUbScRIpTION, AS SHOWN bElOW, IS ENclOSED: Help suppor d e for $3 join us mber for just ever again! Th mitted lan com Ordinary $ ...........................

MS Queens d a Life Me r membership r active and ou you Life $ ........................... paying d comes from lcome your and our goo we slan Donation $ ........................... (All donations $2 and over are tax deductible) would Queen work! and we rk.

TOTAl $ ........................... to have members our vital wo nity portu the ution to e the op eensland at hav contrib pAYMENT DETAIlS: also Qu ’ll MS mber you re plans of r. vembe ncial me g futu Please make cheques payable to Multiple Sclerosis Society of Queensland af and As a fina on the excitin g (AGM) in No m overle f for say etin r Visa M/Card Amex Diners OR please charge my the Me you plete On behal General ply com possible. ward to Annual Card No __ __ __ __ / __ __ __ __ / __ __ __ __ / __ __ __ __ mber, simd as soon as e a me look for slan To becomto MS Queen g with MS, wefree from MS Expiry Date__ __ / __ __ Name on card ......................................................... it return eenslanders livin rt for a world po of all Qu mbership sup .

Return this form with your payment to MS Queensland using the enclosed act your me astating imp Reply Paid envelope. Thank you for your support. dev and its

have your say

Services are delivered to registered clients on the basis of individual assessment and identified needs.

Membership does not automatically entitle you to receive services – people with MS must register as a client and provide proof of diagnosis. For more information call the Information Line on 1800 177 591.

CEO Hopper, Lincoln

WWW.MSQlD.ORG.AU 2015

30/03/

Childhood MS – A Guide for Parents This booklet aims to provide answers to some of the questions you may have as a parent of a child with MS, to better manage the changes that MS can bring.

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Growing Up with MS – The Social and Cognitive Challenges of Paediatric MS This article discusses issues common to young people and families living with paediatric MS, including some of the physical, cognitive and psychosocial impacts that MS can have.

a member d? eenslan u q of ms

Managing School-Related Issues: A Guide for Parents with a Child or Teen with MS This handbook helps parents with a child or teen living with MS advocate for them at school or their learning environment.

To support MS Queensland in its communication activities please join or renew your membership by simply contacting us at mssociety@msqld.org.au or call 07 3840 0888.

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

Membership with us is just $33 a year and helps us provide important information and education about MS, and leading MS research to find a cure, through publications such as MS Life which comes at a significant cost each quarter.

On behalf of all Queenslanders living with MS, their carers, families and friends, we look forward to your help in creating a future free from MS.

MS LIFE – SPRING 2015

MS is usually associated with adults, however approximately 5% of people diagnosed with MS are under the age of 18. Whilst most of the information about MS is the same for children as for adults, MS in children can have a significant effect on the rest of the family, as well as on schooling.

At MS Queensland, we have resources for children, adolescents and parents on MS.

Autumn

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e l p o e p p l e h t a h events t s m h t i w living For more information contact the MS Queensland events team on 07 3840 0828 or email events@msqld.org.au

18 OCTOBER

23 OCTOBER

15 NOVEMBER

MS Swimathon Griffith Sport

MS Moonlight Walk

MS Swimathon Jindalee

www.MSswimathon.com.au

www.MoonlightWalk.com.au

www.MSswimathon.com.au

21 NOVEMBER

27 NOVEMBER

MS Swimathon Toowoomba

www.MSswimathon.com.au

27 FEBRUARY MS Swimathon Gold Coast

www.MSswimathon.com.au

MS Queensland Annual Conference and AGM

www.msqld.org.au

MS Queensland

I would like to give a tax deductible gift of $10 $50 $25 Surprise us!

I would like to make a monthly credit card donation of $

per month

Payment method:

6 DECEMBER

MS Swimathon Sunshine Coast

www.MSswimathon.com.au

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