Ms Life Winter 2015

MSLIFE. WINTER 2015

MS QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

JOSIE’s MS journey: Back on the bike and riding high

The

role of

specialists Who to go to and how they work together pg. 05

pg. 16

pg. 18

pg. 20

Heartmoves for MS in Toowoomba

Our 2015 MS Heroes announced

How we celebrated National Volunteer MS Awareness Month Week

FROM THE Dear readers, Here we are half way through another year and World MS Day has been celebrated as we joined together with the global MS community to highlight the inequality of ‘access’ for people living with MS. This year the MS International Federation launched an online campaign called ‘Stronger than MS’ where we were asked to share thank you messages online to acknowledge the people who have supported our MS journeys. You can read more about World MS Day and how we celebrated MS Awareness Month on page 18.

We’ve had an extremely busy first half of the year, holding five MS Swimathons across the State and making 2014 –15 our biggest MS Swimathon season ever with more than $221,000 raised to fund local support services!

On the topic of breaking fundraising records, when this edition of MS Life went to print we were on track to seeing our biggest ever Enerflex MS Brissie to the Bay with more than 9,000 registered riders and well over $1 million towards our goal of raising a sensational $1.6 million for MS! On another note, this will be my last edition as editor of MS Life as I finish up at MS Queensland. It’s been a privilege to meet many of you over the years and help share news, research and stories with the wider MS community. Please continue sharing your feedback and story ideas with us at mslife@msqld.org.au MS LIFE – WINTER 2015

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Enjoy this edition of MS Life!

Kindest regards, Cassie, Editor

eo c e h t m o fr In his 2012 re-election acceptance speech, US President Barack Obama said “…I have always believed that hope is that stubborn thing inside us that insists, despite all the evidence to the contrary, that something better awaits us - so long as we have the courage to keep reaching, to keep working, to keep fighting.”

MS Queensland’s vision is “a world free from MS and its devastating impact” and “hope” is also one of our organisational values. Each day I count it a privilege to be leading an amazing group of people who are totally committed to offering hope to people living with MS – especially when they need it most. We will never give up offering real hope, no matter how long it takes or how challenging the situation. We stand ready to help and support you on your MS journey.

With this in mind we have filled this edition of MS Life with interesting information and inspiring stories of hope, including new MS research (page 4), the global impact of this year’s World MS Day (page 18), recipients of the 2015 MS Heroes awards (page 16), stories of people Living Positively with MS (page 19) and much more.

I “hope” you enjoy this Winter edition of MS Life!

Best wishes, Lincoln, CEO

Want a MS question answered?

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

CONTENTS Thinking of taking a holiday?

It is important that we all enjoy life to the full and we recognise that everyone needs a break at times from the daily routine.

As a person with MS, planning a holiday or taking a short break may mean a little extra research.

Often the more time you spend planning, the better your experience will be. Whether you are mobile but fatigue easily, are affected by climate and temperature, or need mobility or specialised equipment to allow you to do what you want to do, there are people and organisations that can help.

So we’ve created a checklist with some important things to think about to help you and your family plan your next holiday break. To view the checklist visit our website at www.msqld.org.au/ msresources

Connect online

PAGE 2–3 From the Editors From the CEO Thinking of taking a holiday?

PAGE 4–5 Stepping exercise MS outreach support Heartmoves for MS comes to Toowoomba Logan gets active for life PAGE 6–7

MS fundraisers in the community NDIS update

PAGE 8–9 Specialists: who to go to and how they work together PAGE 10–11 Client in Focus Energy update Are you eligible for a Chronic Disease Management Plan?

PAGE 12–13 Josie's MS journey PAGE 14–15 Supporting the MS cause

Entertainment Books PAGE 16–17 2015 MS Heroes announced

www.msqld.org.au

www.twitter.com/msqld

www.facebook.com/msqld

www.youtube.com/user/ MSAustraliaQ

Acknowledgement: We wish to thank Josie Potter for the use of her image on the cover of this publication. Photo courtesy of Ryan Smyth Photography.

PAGE 20–21 How we celebrated National Volunteer Week MS Support Group update Renew your membership PAGE 22–23 Questions with Tim: Sex and MS MS resources Advocacy update PAGE 24 Calendar of events

MS LIFE – WINTER 2015

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

PAGE 18–19 Access barriers raised on World MS Day How we celebrated MS Awareness Month Celebrating living positively with MS

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Stepping Exercise boosts balance

brain power

Researchers at Neuroscience Research Australia (NeuRA) have found that a home-based stepping exercise can improve not only balance but also thinking skills in people living with MS. In the pilot study published in the MS Journal, Dr Phu Hoang and his colleagues, funded by MS Research Australia, have shown promising results for their stepping exercise that directly targets the key balance issues that contribute to falls risk for people with MS. Dr Phu Hoang said; "this work is exciting because it shows it is possible to modify key physical and cognitive risk factors for falls in people with MS.”

&

Studies have shown that at least 50% of people with MS experience frequent falls. And of those who fall, 50% sustain injuries that require medical care. As a result, the fear of falling can cause people with MS to restrict their daily activities, with significant impacts on quality of life and health.

MS Research Australia CEO, Dr Matthew Miles said; “the promising results from this innovative project are a result of combining Dr Hoang’s extensive experience working with people with MS with the NeuRA team’s expertise in falls prevention for the elderly.”

For more information on this study and other MS research news visit www.msra.org.au

MS outreach support Earlier this year Central Queensland experienced the wrath of Tropical Cyclone Marcia. There was widespread destruction as a result of fallen power lines and trees, with a number of homes damaged beyond repair.

A large majority of Rockhampton and Yeppoon residents were without power for nearly a week, and with temperatures in the high 30’s and no means of relief through air-conditioning, this played an enormous toll on people living with MS in the region.

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Our Central Queensland office based in Rockhampton was closed for a week due to power cuts but as soon as it was up and operating, our former Regional Service Coordinator (RSC) Lynette Ellison, went into full swing establishing an outreach post for locals living with MS. We’d heard that many of our clients had attempted visiting the community recovery sites but

had to return home due to the excessive heat and waits of up to four hours.

Lynette advocated for the needs of local people living with MS and as a result, an outreach station was established at our air-conditioned Central Queensland office. Our clients met with the Community Recovery Outreach Service to submit applications for the emergency relief payment and Lynette also assisted with food vouchers to support those who had lost food during the power outage. As a direct result, a number of our Central Queensland families benefited from this service.

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

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for MS comes to Toowoomba Regular physical activity can benefit everyone, especially people living with health conditions, but this doesn’t necessarily mean that you need to do vigorous exercise to achieve health benefits. The Heart Foundation has developed a lowto-moderate intensity exercise program called Heartmoves, designed for people who are living with health conditions.

The first Toowoomba ‘Heartmoves for MS’ group is due to start next month as a result of the overwhelming support of the local community.

It will be a safe, fun, and motivating, low-tomoderate intensity exercise class led by MSaccredited Heartmoves leader Jan Harland.

The ‘Heartmoves for MS’ program will include strengthening, balance, coordination, core stability and flexibility – the activities that have been identified as most desirable by the people who responded to our community survey earlier this year, and is due to be held at the Milne Bay Aquatic Centre – the preferred location identified by respondents to our survey.

People of all ability levels attended and were asked to complete exercises designed to challenge

their balance, strength and For more fitness. At the end of each information on MS session, a short education exercise options suited session was delivered by to you please contact our our physiotherapy staff and Physiotherapy Department the overall feedback about on 07 3840 0841 or visit the group delivered positive www.msqld.org.au results.

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

MS LIFE – WINTER 2015

One of MS Queensland's physiotherapy department’s goals is to facilitate the setting up of local ‘Heartmoves for MS’ classes across Queensland. This program has been specifically designed to provide Heartmoves leaders with the necessary skills and training to support exercise with people living with MS. Earlier this year, our physiotherapy team delivered this training in partnership with Heartmoves YMCA.

In partnership with PCYC, our physiotherapy team delivered an eight week ‘Step-by-Step’ exercise group in Logan in the second half of last year. The group sessions were attended by 14 people with MS, each of whom were individually assessed prior to commencing the class to determine their level of activity.

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in the s r e s i a r d n u f S M community Will you put in the hard yards to Kiss Goodbye to MS? If you’re a keen runner we have a few opportunities coming up for you to challenge yourself and raise valuable funds to help find a cure for MS. You can register for the Bridge to Brisbane coming up in August or take part in Tough Mudder in September.

The Bridge to Brisbane on Sunday 30 August is an iconic Brisbane running event and this year you’ll have the opportunity to run for Team MS or start your own team and recruit runners to join you. Choose between the 5km or 10km and join 30,000 other people who are making a difference for a variety of charities.

This year we will be supporting fundraisers better than ever before with new online fundraising pages as well as a welcome pack and access to fundraising incentives.

Or, is running not enough of a challenge? Maybe Tough Mudder is for you. The event is a 20km obstacle course within the grounds of the picturesque Sirromet Winery at Mount Cotton. Taking place on the weekend of 12-13 September, this challenge is designed to test physical strength and mental grit. Competing in Tough Mudder is an amazing way for you to raise vital funds to support research into finding the cause and cure for MS.

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If you’d like to register for the Bridge to Brisbane or Tough Mudder and fundraise for us please visit www.msqld.org.au/kiss or contact our Community Fundraising Coordinator Clancy Feuerriegel on 07 3840 0887 or email events@msqld.org.au

NDIS update What do you need to know about the NDIS?

If you have any questions or would like assistance regarding the NDIS please contact your Regional Service Coordinator. For information on NDIS information sessions coming to your region please contact Director of Services Karen Quaile on 07 3840 0840 or email karen.quaile@msqld.org.au

Below we have provided some of the more basic information about the NDIS so that you and your family can begin to prepare for its introduction to Queensland from July next year.

• from July 2016 the NDIS will begin to be rolled out in Queensland, delivering individualised support and links to health and community services to eligible people under 65 living with permanent and significant disability, their families and carers;

Council of Australian Governments meets to discuss NDIS In late April all Disability Ministers from across Australia attended the Council of Australian Governments (COAG) Disability Reform Council.

Some of the outcomes from this meeting included: • July 2019 is the proposed end date for all Queensland participants of the NDIS to be fully transitioned;

• the NDIS will provide a flexible, whole of life • a committment to innovative accessible housing has approach for support that is needed for been dedicated to setup pilot programs around people to pursue their goals and Australia; and aspirations and participate in daily

For further life; and • a NDIS workforce strategy has been information on what proposed to ensure a fair market and adequate • the NDIS is not means tested the NDIS will mean workforce is provided to facilitate the choice and has no impact on income for you, visit www. and control for the person living with a disability support such as the disability ndis.gov.au/peopleinto the future. support pension. disability/accessrequirements

MS LIFE – WINTER 2015

It’s great to have received a large number of inquiries in recent months about the National Disability Insurance Scheme (NDIS). We are constantly sharing information across all of our communications and we are here to help you by answering any questions that you and your family might have such as “what does the NDIS mean?” and “what age is it for?”

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SPECIALISTS who to go to and how they work together When a neurologist diagnoses MS they may also suggest that you see other healthcare specialists for expert opinion and advice on managing treating specific MS symptoms. These referrals may occur at any time, whether it be at the time of diagnosis or many years later, it all depends on what is happening for the individual person living with MS. We've listed some of these medical specialists and community support services who may become part of your support network – the people who will be able to give you timely and up to date advice on your specific symptoms of MS.

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MS Nurse

MS QUEENSLAND

MS nurses can either be based in a MS Clinic with your neurologist, at MS Queensland or in the community. At a MS Clinic, the MS Nurse can often be your first point of contact. They are an important member of your medical team and play a significant role in education and supporting you in managing many aspects of MS.

There are MS societies in each State. MS Queensland aims to be the first-choice for MS information, education, treatment, care and support across Queensland.

People are often referred to MS Queensland to receive the specialised support and advice necessary to access services and support in your local community.

Physiotherapist There are physiotherapists who are specifically trained in working with people who live with neurological conditions, for example MS Queensland’s physiotherapy team. Physiotherapists have an important role in helping people living with MS maintain physical health and provide assessment and management of many different problems caused by MS.

Written by guest contributor and MS Clinic Nurse, Kaye Hooper

urologist

pain specialist

People living with MS can experience bladder problems which are a direct result of damage caused by MS. It is helpful to see a urologist when these problems occur so that a thorough assessment can be done and treatment tailored to your individual needs. The urologist may also have a specialist continence nurse working with them who has expertise and provides education and support.

Pain is a common symptom of MS – it affects many people and can be a difficult symptom to manage. Many people living with MS are referred to multidisciplinary pain clinics attached to larger hospitals.

These pain clinics have a number of skilled health professionals in the team (including physicians, nurses and psychologists) who will assess, provide support and offer ongoing care and management of chronic pain.

GENERAL PRACTITIONER (GP)

GPs have a network of local medical specialists so that if you live a distance from major city hospitals, they can give you referrals to specialists in your local region (e.g. urologist, speech pathologist, physiotherapist, psychologist, occupational therapist, dietician, or social worker). There is ongoing communication between all of the different specialists mentioned in this article and your GP so that your MS can be treated consistently and all healthcare specialists are up to date with your recent treatments and care.

We hope this answers some of your questions on the role of specialists in your MS support team. If you have any other questions about MS please call our InfoLine on 1800 177 591 or email info@msqld.org.au

A referral to a specialist means that you will receive expert advice and management tailored to your own needs. For some of the specialists listed, you may only need to see them once, but for other specialists it may be that you see them multiple times as things arise throughout your MS journey.

MS LIFE – WINTER 2015

GPs have a crucial role in the management of chronic diseases and are experts in general healthcare ensuring that preventative, current and future healthcare is monitored and managed. Your GP does not need to be an expert in MS or have lots of patients living with MS as they will receive detailed reports on your MS care from your neurologist after each review (or on discharge from a hospital admission). Likewise, your GP will receive reports and letters from other specialist doctors mentioned above should they be part of your support network. It is very important to note that not everything that happens to you will be related to your MS.

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S FOCU CLIENT IN Nicole Gibson from Gladstone At the young age of just 21, Nicole Gibson started experiencing muscle weakness in her legs – just two weeks before her wedding – yet it wasn’t until 2011 that she received an official diagnosis of MS. Now, eight years later, the mum-of-two has decided to attend some of our information and education workshops in her local community of Gladstone.

Having been a client of ours for a number of years, being actively involved in her local MS Support Group and an avid MS fundraiser, Nicole stays in regular contact with her Regional Service Coordinator (RSC) and after a discussion late last year, she decided to take the next step and attend one of our education and physiotherapy workshops.

“I learnt so many tips and techniques for how to better manage my MS day-to-day, simple things like structuring my days better so that I don’t get fatigued so quickly. I found the information and physio workshop so beneficial that I also attended MS Queensland’s ‘Fatigue self-management’ and ‘Working with MS’ workshops.

It’s been great to speak about MS in an open group environment where everyone was experiencing similar struggles to me. Knowing that specialist support is available and that I can call MS Queensland at any time is so valuable to me and my family.

I’d most definitely recommend anyone living with MS to attend one of these workshops to learn how to better manage their daily lives with MS.” For more information on our information and education workshops and how we can help you manage your MS, please contact our InfoLine on 1800 177 591 or visit www.msqld.org.au

Energy

deregulation in Queensland delayed until 2015 It's been proposed that Queensland retail energy deregulation was to be introduced as of next month. The intention of price deregulation is to bring more competition and choice to Queensland consumers and ultimately put more pressure on electricity prices.

However in late April it was announced that there would be a delay of the deregulation of retail electricity prices in southeast Queensland while an inquiry into electricity prices by the Queensland Productivity Commission is undertaken.

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As an organisation, we’re supporting further investigation prior to energy deregulation being introduced and we will continue to lobby Government to ensure that greater education and engagement with customers is provided, a review of rebates is undertaken, there is increased targeting of concessions and that there are appropriate assistance and incentives offered for people to adopt new energy efficient technology.

The Queensland Council of Social Services (QCOSS) has some great energy factsheets on their website (www.qcoss.org.au/energy-factsheets) including information on how to reduce energy bills.

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

Are you eligible for a Chronic Disease Management Plan?

You may have heard of Enhanced Primary Care (EPC). Recently this was replaced by the Chronic Disease Management Plan (CDMP) which is managed by your GP.

• a GP Management Plan; or • a Team Care Arrangement.

If you have a chronic medical condition your GP may suggest a GP Management Plan, but if you also have complex care needs and require treatment from two or more other healthcare providers, your GP may suggest a Team Care Arrangement as well.

A GP Management Plan is a plan of action that you have agreed on with your GP. It will identify your healthcare needs, set out the services your GP will provide, and list the actions you need to take. Your GP must obtain your agreement before providing these plans.

If your healthcare provider accepts the Medicare benefit as full payment for the service, there will be no out-of-pocket costs. If not, you will have to pay the

gap. If you have both the GP Management Plan and the Team Care Arrangement, you may be eligible for Medicare rebates for certain allied health services. Your GP will determine if you are eligible for these allied health services which must be directly related to the management of your chronic condition.

For people living with MS, these plans can provide some excellent outcomes including a program of physiotherapy treatments, exercise program development and delivery, or advice from an occupational therapist, podiatrist, speech pathologist or dietician. Each of these critical services can enhance your quality of life by promoting independence of movement, capacity to engage in everyday activities and maintain a fulfilling lifestyle.

Talk to your GP today about how these plans may work for you. If you have any questions or would like more information please contact your Regional Service Coordinator directly or contact our InfoLine on 1800 177 591 or info@msqld.org.au

MS LIFE – WINTER 2015

The CDMP is available to anyone living with a chronic medical condition, including MS. There are two types of plans that can be prepared by your GP for chronic disease management:

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Josie's MS

journey

No matter what life

throws at Josie Potter, she refuses to give up!

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

Back on the bike and riding high Having lived with MS for nearly 15 years, Josie has faced her fair share of challenges and health struggles, yet continues to be one of our most determined, committed and strong-willed event participants and MS ambassadors.

working. I have to admit this was a tough decision and mentally I struggled to cope with my perceptions of myself. It was during this time that I made this silly list of things I wanted to do. It was like my ‘bucket list.’

Living on a cattle property near Kingaroy, Josie has made the three-hour drive to Brisbane for both the MS Brissie to the Bay bike ride and MS Moonlight Walk for five years. But things haven’t always been so easy for Josie.

Two of the things were to run 2km and ride 5km. Not likely! I hadn’t been able to do either for years but for some reason I just couldn’t get these off my mind and once the seed was planted, I just had to have a go.

Rewind six years to 2009 as we share her story of how she came to get involved with MS Queensland’s fundraising events.

Running was terribly hard and riding a bicycle – virtually impossible! Every time I climbed on a bike I fell off. It was with a lot of stubbornness and probably a good dose of stupidity that I persevered.

It seems to me to have been written with MS in mind.

I know that today I will have to take two or three ‘rests’ just to get through doing some basic bits and pieces around the house and if I’m really lucky I won’t break anything or hurt myself. I have relapsing remitting MS and luckily for me days like today are the exception rather than the norm.

My MS journey started officially on the first day of the Sydney Olympics at the age of 33. I got out of bed and fell on the floor. Over the next few hours I lost the use of my left side, speech, swallowing, hearing and bladder control.

After admission to hospital and a multitude of tests and misdiagnosis, both my doctor and I believed that my journey had started a few years earlier with a number of serious incidents and mystery illnesses which resolved themselves over time, but were not specific enough to ring the MS warning bells.

Over the next few years I returned to work in a reduced capacity but after a particularly distressing setback and injury in 2006, on my specialist’s advice, I stopped

With my husband’s help, gradually I was able to ride about 2km. It took nearly two years, but eventually I achieved my goal. Somewhere in this time I received MS Queensland’s newsletter and read an article about the MS Brissie to the Bay bike ride, which got me thinking “could I do that?”

I won’t tell you it’s been easy, that would be a flat out lie, but on June 26 2011, I completed the 10km course and this year was my fifth year participating in the annual event where I managed to ride 50km!

Like most people living with MS I have needed MS Queensland’s services from time to time over the years.

The work that they do is just so fantastic. They help and support people from diagnosis right through the various obstacles; offering employment support, education, respite and a whole range of other services which are funded by events like the MS Brissie to the Bay. So I choose to get out there and try to raise as much money and awareness as I possibly can to support this wonderful organisation, because I know that they will be there in the future should I, or anyone else, need their support.”

To read more about Josie’s MS journey see page 19.

MS LIFE – WINTER 2015

“I have a theme song, it’s John Denver’s ‘Some Days are Diamonds, Some Days are Storm.’

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E S CAU MS THE G SUPPORTIN T S E G G I B OUR hon t a im w s ms er season ev The colder weather is here heralding the end of another successful MS Swimathon season. Throughout the 2014-15 season we’ve hosted eight events around Queensland and the response from fundraisers and participants has been outstanding, raising $221,325 – a new record for a MS Swimathon season.

We’ve witnessed some amazing examples of people going above and beyond, both in and out of the pool, all in an effort to raise much needed funds for people living with MS. Checkout their stories below: • Luke Fraser and his team ‘Brothers Doing it for Dave’ raised more than $5,000 in Toowoomba. What was so special about this is that Luke and his team only registered one week out from the event and with Luke’s dad, Dave (who is living with MS) as their inspiration, they were able to raise a phenomenal amount in such a small amount of time.

• The Yarranlea Primary School set a huge record in the new ‘Hours of Power’ competition at the Griffith Sport event swimming a total of 235 laps over the two hour ‘power’period. While a number of teams have since had a good crack, this mark still stands at the end of the season.

• Team MS from Rockhampton absolutely nailed their fundraising with a total of $14,389 raised amongst their 15 team members. Led by four amazing women all living with MS (Rachel Kerr, Desiree Thomson, Bobbie-Jo Patterson and Julenne Borsboom), this fantastic team has set a new all-time record for the most funds raised by one team at an MS Swimathon.

Planning has now started for the 2015-16 season with plenty of new ideas and even a new location! The first event of the new season will be hosted by Griffith Sport in Brisbane on Sunday 18 October. Call us on 07 3840 0887 to register your interest and find out when the next swim in your region will be held. For more information visit www.MSswimathon.com.au

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Save the date: 23 OCT 15 Join the MS community at this year’s MS Moonlight Walk for a fun evening taking in the city lights as you walk 5km or 10km around the Brisbane River. On Friday 23 October we hope to see over 3,000 people joining in the fight against MS and raise $550,000.

Each walker will receive their own lantern to show their support for people living with MS. So why not get a team together and come along in fancy dress?

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

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ms limited edition

lottery update

For more than 25 years MS Queensland’s Lottery program has been offering some of the most exclusive vehicles, prizes and unbeatable odds in Australia. The program’s ongoing relevance and strength in the market is one of the largest contributors to our organisation’s success over the past two decades.

But one of the best parts about our Lottery program is getting to call our lucky winners at the end of each draw!

Recently we spoke with Frederick and Elisabeth Martin from the Gold Coast who won our LE164 draw. After purchasing a new MercedesBenz from their local dealership, they received a ticket into our March draw and were surprised to receive the call announcing that they’d won first prize – a Mercedes-Benz E400 Coupe valued at more than $145,000!

“It was absolute disbelief when we received the phone call from MS Queensland to say that we’d won, we’ve never won anything before and are extremely To purchase a ticket in the next grateful for Limited Edition Lottery please call 1800 060 210 or visit www.mslimitededition.com.au

MS Queensland is pleased to be selling the Entertainment Books again this year. Each membership has hundreds of 50% off and 2-for-1 offers for restaurants, cafés, attractions, shopping, groceries and travel and contains over 2,000 offers that you can use whenever you like until 1 June 2016.

But the best part is that 20% from every membership sold contributes to the work of MS Queensland, the only provider of services and support for people living with MS in Queensland.

Help us achieve our vision of a world free from MS by sharing this link with your friends and family.

Choose from the traditional Entertainment Book or the Entertainment Digital Membership, which puts the value of the book onto your iPhone or Android smartphone.

Ordering is easy: • you can order online at www.msqld.org.au; or • visit our administration office at 286 Gladstone Road, Dutton Park between 8:30am and 4:30pm Monday to Friday.

If you have any questions about the Entertainment Book please contact Wendy Swan on 07 3840 0888 or email mssociety@msqld.org.au

MS LIFE – WINTER 2015

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15

MS awareness month special

heroes ANNOUNCED It gives us great pleasure to announce this year’s MS Heroes...

MS Young Person of the Year:

Ashleigh Do Rozario

Five years ago we launched our annual MS Heroes awards program to recognise and celebrate the contributions of Queenslanders who are ‘heroes’ to the multiple sclerosis cause. With the introduction of a new ‘Community Access’ category this year, acknowledging those who have assisted a person with MS to better gain access to their community, we received a number of strong nominations.

As with previous years, our judging panel found it extremely difficult to choose only five selected recipients who are heroes in their own respective ways.

MS LIFE – WINTER 2015

16

The selected recipients of the 2015 MS Heroes awards were acknowledged and celebrated at a reception hosted by His Excellency, the Governor of Queensland and MS Queensland Patron, the Honourable Paul de Jersey AC, on the day after World MS Day.

Ashleigh was diagnosed with MS in 2009 and at the age of just 23 became legally blind. Despite this, she remains working full-time as a paralegal and is a tireless fundraiser for MS Queensland and MS Australia – having been the highest individual fundraiser and captain of the highest fundraising team for the Gold Coast MS Swimathon for three years. In his own words, her husband Craig says “I have been privileged to witness first hand how she has confronted her diagnosis… she has always maintained a positive and selfless spirit and this is why she is my MS Hero.”

MS Ambassador of the Year:

Rachel Kerr

This young lady has repeatedly and consistently led the way in her hometown of Rockhampton to project manage the local MS Swimathon event. Rachel has amazing energy, an ability to get things done, and the level of respect and esteem that she holds within her community makes our jobs that much easier for having her take the lead on the ground.

MS Community Access Award:

Joanna Leane

Joanna is a hero for many reasons. She connects more than 200 people in southwest Queensland and no question, person or task is ever turned away. She’s one of the most positive people we’ve ever met and

MS Volunteer of the Year:

Michael Kozakis Michael brings a lot of laughter and fun to MS Queensland’s primary care accommodation facility, Granston Lodge, whenever he is around. He’s been labeled as friendly by all of the staff and goes above and beyond in his role for the residents. He accompanies them on social trips and medical appointments, while always leaving a smile on everyone’s face.

MS Carer of the Year:

Ashley Gittins Ashley means the world to his wife of 14 years, Dianne, and in 2008 when she was diagnosed with MS, not only did his support allow her to continue her dream of running her own business, but he also gave up his career to ensure her dream continued.

He’s enabled his wife to help over 10,000 students begin music through school programs, To read the 2015 thanks in a huge way to his MS Heroes’ full dedication and selflessness. nominations visit www.msqld.org.au

MS HERO CATEGORIES MS Young Person of the Year This award is given to the person who is young or simply young at heart and is living positively with MS.

MS AMBASSADOR of the Year This award is given to a person who has been an outstanding champion of the MS cause, whether it is through contacting a Government representative or showing support for the wider MS community here in Queensland.

MS Community Access Award This award is based on this year’s international theme ‘Access’ and awarded to someone who has assisted a person with MS to gain better access to their community. It could be an employer, community organisation or local Council.

MS Volunteer of the Year This award is given to the person who has demonstrated outstanding volunteer services and contributed to the MS community.

MS Carer of the Year This award is given to the person who has shown outstanding selflessness to care for and support a person living with MS.

MS LIFE – WINTER 2015

has herself also been living with MS for 16 years. One example of Joanna’s selfless work is when a gentleman in her local community required a new wheelchair and she took it upon herself to coordinate with a local mobility company to repair an unused broken scooter so that he could get around his yard.

17

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MS awareness month special

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On Wednesday 27 May the global MS community celebrated the seventh annual World MS Day. Each year a theme is celebrated by more than 2.5 million people living with MS across the world.

This year we’ve once again joined together to highlight the inequality of ‘access', in particular access to MS treatments, services, housing and equal and fair employment.

This year the MS International Federation launched an online campaign called ‘Stronger than MS.’ The campaign asked people and MS organisations from across the world to share thank you messages on social media using the hashtag #strongerthanMS. Stories were shared about access, demonstrating how breaking down the barriers to access can make a significant impact on the lives of people with MS, and ultimately, that we’re stronger than MS.

Read more about World MS Day at www.worldmsday.org

How we celebrated MS Awareness Month During the month of May we saw another hugely successful Kiss Goodbye to MS campaign. Now in its fifth year, the national campaign continues to raise awareness and funds for vital research into a cause and cure for MS. This year MS researchers were encouraged to wear red labcoats on the1st of May to help launch the campaign. The team at the University of Queensland Centre for Clinical Research in Brisbane jumped on board and enjoyed the chance to set the microscope aside and let their hair down to help promote Kiss Goodbye to MS (pictured below).

Queensland has seen some amazing fundraising efforts with passionate people around the State doing their bit to kiss goodbye to MS. One of these lovely people is Michelle Fowler from the small town of Crows Nest, 40km north of Toowoomba. Michelle organised a series of fundraising events including a Country Music Festival, a Car Boot Sale and a Jazz Night.

“I am taking part in Kiss Goodbye to MS because a friend’s husband is living with MS. So far I’m really enjoying the challenges that I have set myself in my fundraising goal and the events I will be holding.”

MS LIFE – WINTER 2015

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We’re also excited to announce that Queenslanders will be able to kiss goodbye to MS year round from July onwards, with MS Queensland’s current Community Fundraising campaign being re-branded as Kiss Goodbye to MS. To register your own fundraiser or to join in one of the organised activites such as Bridge to Brisbane or Tough Mudder, visit www.msqld.org.au/kiss

celebrating

MS awareness month special

y LIVing positivel with ms Can you believe it’s been four years since our wonderful ambassador, Ipswich Mayor Paul Pisasale, called on our community to follow his lead and share stories about how you are living positively with MS. It has been a privilege to share more and more stories each year about people living with MS who are continuing to achieve great things in their lives.

Hi my name is Josie. I live in rural Queensland and was diagnosed with MS nearly 15 years ago.

Two or three years ago I thought I had it pretty much figured out. I had fought my way back to quite good health, learned how to ride a bike again, and participated in numerous MS Brissie to the Bay bike rides while raising funds for MS Queensland. I was also active in my local MS support group and tried wherever possible to help others to find their way through the many confusing and frustrating episodes that make up a life with MS. You could say, I’d met my challenges and I pretty much knew where life was heading. Or so I thought.

Ironically, on the 13th anniversary of my MS diagnosis I collapsed with a brain hemorrhage from a brain aneurysm.

I was flown to the Intensive Care Unit at Royal Brisbane Hospital and everything actually seemed to go not too bad for a few days. Unfortunately six days in, the unthinkable happened and I suffered a stroke. Bummer!

Two more brain surgeries, more ICU and sadly damage to the right side of my body (the opposite side to that

which had been affected by MS). On the upside, I was alive! I was so incredibly lucky, and we knew it.

When I came home from hospital I was determined that this was not the end of it for me. I participated in clinical pilates, did six months of speech therapy, visited our local hydrotherapy pool and worked my butt off to get my strength, balance and coordination back. It was exhausting but nearly one and a half years later and I’ve learnt how to swim, completed a mini-triathlon and even a Kokoda Challenge. I’m pretty good but there are days when my right side gets quite lazy and a bit inclined to drop me on my face.

And I’m back on my bike again this year feeling stronger than ever. I think my neurologist had a slight heart attack the day I asked if I could run and ride again, but in the end he said “well why not.” I rode in last year's MS Brissie to the Bay and was back again this year feeling even stronger.

And I’m back working in my local community, trying to raise awareness of MS and get better outcomes for people living with MS. I don’t know how much help I can be, but if raising funds and awareness within my own community about the plight of many people with MS can help, then that is what I am going to continue to do and hopefully if we can’t find a cure, we can at least make a difference to those who need it.

MS and the journey I have been on over the last 15 years has changed my life. I won’t say that it’s been a good thing, nobody would wish this disease on themselves or anybody else, but I have had to learn a level of resilience, adaptability and positivity that I doubt I would have learned through a normal non-MS life. I hope that I can continue to live my journey positively into the future.

MS LIFE – WINTER 2015

This year the recipient who was selected to have lunch with Mayor Pisasale and our Advocacy Manager Natalie Walsh was Kingaroy resident Josie Potter and her sister-in-law, Ann. Josie’s story reflects true inspiration. No matter what she’s been faced with in life, she’s continued to move forward and has achieved great things in the process.

Josie won’t accept ‘no’ for an answer and keeps pressing ahead regardless of what MS or life throws at her. We hope you will enjoy reading Josie’s story below.

To read more Living Positively stories visit our website www. msqld.org.au

19

HOW WE CELEBRATED

NATIONAL VOLUNTEER WEEK The hard work of our dedicated team of volunteers often goes unnoticed. In celebration of National Volunteer Week which was held on the 11-17 May, we would like to thank our 1,000 volunteers who take time out of their busy schedules to help people living with MS. Over the years our volunteer program has grown significantly, rewarding us with some wonderful people who volunteer their time across a range of activities including the MS Op Shop, administration, exercise support, fundraising events, finance and activities support. They have been an essential part of MS Queensland’s work and we couldn’t support our clients without their help.

We recently had a chat with some of our longest standing volunteer groups to see the amazing work that they do.

The Pottery Group

The Op Shop Group

With nearly 50 years of volunteering experience between them, Bev Strous and her team of volunteers provide a friendly social outlet for clients and residents who attend the weekly Pottery Group held at Dutton Park.

With more than 100 years of volunteering experience between them, Therese and Christina and the team of eight ladies who run the MS Op Shop at Dutton Park have been an incredible addition to the MS Queensland team. Each of the ladies started volunteering at the Op Shop through word of mouth – many without a direct connection to MS.

This dedicated group look forward to letting their creative juices fly each If you would like to week, making items such as plates volunteer for us please email and teacups. Over the past 26 volunteer@msqld.org.au or years, Bev’s work with the Pottery call our Resourcing Specialist Group has made a positive impact Ellie Lian on 07 3840 0870. For to the lives of many of our clients more information visit our residing in our primary care facility website at Granston Lodge and we thank them www.msqld.org.au for their tireless work.

MS LIFE – WINTER 2015

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Over the years the ladies' primary priority has been to raise funds to support our Granston Lodge residents.

Seeing the direct impact of the funds they raise and the positive impact on our residents at Granston Lodge is what drives this special group of people and we’re extremely thankful for their dedication and support for the MS cause.

Group Update What a fabulous action-packed six months we’ve seen created by the MS Queensland team so far this year! Along with the many volunteers who make it all possible, supporters of the MS cause, and of course people living with MS, everyone is working together to raise awareness throughout Queensland.

If ever you need some positive energy in your life, come along to an MS Queensland event such as the recent Enerflex MS Brissie to Bay bike ride. The enthusiasm of the riders and families who attend in support of people living with MS is vibrant. Seeing participants come across the finish line while the MS Cheer Club cheer them on is overwhelming. And to the people with MS who jump on their bikes and get involved – they aren’t riding for gold medals or material reward, but are challenging the fact that their bodies will not be beaten by MS. They ride for those of us who can’t. This year nearly 9,000 participants made the day another incredible milestone while the event celebrated its 25th anniversary.

W E N E R

IP H S R E B M E YOUR M It’s that time of year again – membership renewal time.

Membership with us, which is just $33 a year, helps us provide important information and education about MS and leading MS research. To become a member or renew your membership by 30 June, simply contact us on mssociety@msqld.org.au, call 07 3840 0888 or complete and post the enclosed membership flyer back to us.

On behalf of all Queenslanders living with MS, we look forward to your help in creating a future free from MS and its devastating impact.

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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:

m

Annual Ordinary Membership $33.00 (inc. GST) (1 July – 30 June) Life Membership $330.00 (inc. GST) d? providing da (Life Membership can only be granted following application for Ordinary Membership) eenslan ists us in research to fin MS Qu er with year, ass memb t $33 a leading edge MS a u jus MY pERSONAl DETAIlS ARE AS fOllOWS: is yo ich d Are th us, wh n about MS an as MS wi h hip suc Full Name ........................................................................................................ ns Members n and educatiosis. publicatio bsite. gh tio ou we thr Address ........................................................................................................... informa multiple sclero on our receive nt e u nte ntr yo for co n Ce n tio e cure ormatio informa line Resourc ........................................................................................................................ t the inf mmitted to ne r On ludes the co yo ack abou This inc Insight and ou Postcode ................................................ Phone No ......................................... ve feedb MS Life. We are resource to ant its Life, MS n ry positi , eive ve d magazine ble informatio do not restric comes Email ............................................................................................................... s use ua we ularly rec We reg ship client-foc vide this val and as such ers only. But thi pro in MS and memb Date of Birth .................................................................................................... of our flagcontinuing to support. interest nsl ur an ee yo s who ha on to MS Qu and we need es MS circulati stantial cost d servic ur support plEASE INDIcATE YOUR INTEREST IN MS QUEENSlAND ations an w yo at a sub I have MS I just want to support the the public n please sho hip with MS the u value So if yo and provides your members 3 you can A family member has MS MS cause Queensl g or renewing a fee of just $3 r becoming I know someone with MS Other ........................................ r by joinin and today. Fo might conside rrying about u rt Queensl a year, or yo 30 to avoid wo strength of MSMY SUbScRIpTION, AS SHOWN bElOW, IS ENclOSED: Help suppo nd e for $3 t Th d join us mber for jus ever again! mmitte co Ordinary $ ...........................

Me hip d MS Queensla an ers a Life ur memb ive od our act yo Life $ ........................... paying d comes from lcome your and our go an we Donation $ ........................... (All donations $2 and over are tax deductible) Queensl d we would work! an rk. have TOTAl $ ........................... members our vital wo nity to opportu and at the tion to the ibu ve ntr nsl ha co ee pAYMENT DETAIlS: u’ll also MS Qu mber yo ure plans of mber. fut ve ancial me Please make cheques payable to Multiple Sclerosis Society of Queensland f and ea As a fin on the exciting (AGM) in No erl ng form ov half Visa M/Card Amex Diners OR please charge my your say neral Meeti be lete the Ge ply comp possible. Onrd to Annual wa Card No __ __ __ __ / __ __ __ __ / __ __ __ __ / __ __ __ __ mber, simd as soon as look for an me a me To beco to MS Queensl ng with MS, wefree from MS Expiry Date__ __ / __ __ Name on card ......................................................... it return eenslanders livi rt for a world po of all Qu mbership sup ct.

Return this form with your payment to MS Queensland using the enclosed your me vastating impa Reply Paid envelope. Thank you for your support. de 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

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MS LIFE – WINTER 2015

MS Support

21

questions with tim

Sex

let's talk about

Everyone is a sexual being. From the moment of birth until the moment of death, our capacity for communication, relatedness and intimacy unfolds in a natural developmental sequence. As such, it is natural for everyone to desire affection and intimacy. Whether you are newly diagnosed, young, mature, single or in a committed relationship, chronic illnesses and potential disability do not diminish these needs and desires (F.W Foley PhD).

Sexual problems are often experienced by people with MS but they are very common in the general population as well. Sexual arousal begins in the central nervous system, as the brain sends messages to the sexual organs along nerves running through the spinal cord. If MS damages these nerve pathways, sexual response – including arousal and orgasm – can be directly affected.

MS LIFE – WINTER 2015

22

Fatigue, stiffness in limbs and joints, weakness, bladder/ bowel disturbance, mood and cognitive changes are MS-related symptoms that have been widely reported as impairing sexual response and relations. There are numerous protocols and medications available to manage these symptoms. Communication with an MS healthcare provider on symptom management with sexual health in mind can be helpful in improving sexual function.

Now that is a very clinical way of talking about something so intimate and private. Raising these concerns with your doctor, nurse or any member of your healthcare team is for most people very difficult. I would be remiss if I did not also acknowledge that many healthcare professionals are also uncomfortable in discussing sexual function and sexuality with patients and clients – which can mean

important concerns are often brushed over or avoided.

Be persistent, and include your partner. This not only enhances intimacy by allowing both partners to learn and explore together, it adds weight to how this symptom is affecting you, your partner and your life with MS. Like most complex MS symptoms patience and persistence is going to be required. There will be trial and error. If partners feel inhibited about talking through these issues, counselling with a health professional that is knowledgeable about MS can prove helpful. Having written information at hand can also start conversations.

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

If you have any questions or would like more information on sex and MS see page 23, visit our website www.msqld.org.au/msresources or call our InfoLine on 1800 177 591.

MS and sexuality Sexuality – how we think, feel and express ourselves sexually is an important part of life.

Whilst having MS may affect sexuality, it doesn’t mean that one’s emotional and sexual life has to stop. We have a range of resources on MS and sexuality which are freely available to our clients and their partners.

Sex, Intimacy and Relationships This resource talks about how having MS might affect sex and intimacy, as well as MS symptoms that may also have an indirect affect. It also discusses talking to healthcare professionals and has tips and practical advice for men, women, couples, partners and dating/new relationships, as well as information on further reading.

Sexuality and MS – a guide for women This booklet is relevant for women living with MS as it explains how MS can impact on a woman’s sexual response. It also discusses practical solutions for coping with symptoms that can interfere with sexual activity.

Sex and MS – a guide for men This booklet is written for men with MS who are worried about sexual issues. It discusses some of the complicated factors that contribute to and influence sex and provides some approaches that may help to manage them.

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

Advocacy we help update influence change

As an organisation, MS Queensland shares the voices of people living with MS by understanding the impacts of living with MS and raising awareness.

We achieve this not only through the work carried out by our team of local Regional Service Coordinators (RSCs) who support clients, but also by working with the Government to reinforce targeted issues affecting our community. By proactively consulting with local, State and Federal politicians, we can provide Government with a better understanding of MS and ultimately influence policy changes that will benefit you.

While the NDIS is being introduced to Queensland over the next 12 months, we have an opportunity to transform the lives of people living with MS and other Progressive Neurological Diseases (PND)*. This critical time will also bring with it change to the landscape of disability service provision as it is fully rolled out across Queensland to all eligible residents by 2019.

Earlier this year we provided a 2015 –16 Budget submission to the Queensland Treasurer highlighting recommended policy issues to support the requirements of Queenslanders living with MS and other PND to remain socially and economically active members of their community. Our priority issues continue to include the NDIS (particularly through choice and control that will be offered through self-directed funding), as well as employment, energy, young people with neurological conditions and appropriate residential care. *At least 35,000 Queenslanders are living with PND. This can include; Multiple Sclerosis (MS), Huntingdon’s Disease, Muscular Dystrophy, Frederick’s Ataxia, Motor Neurone Disease, Alzheimer’s, Epilespy and Parkinson’s Disease.

If you have any questions regarding advocacy or would live to view our 2015 –16 Budget submission please contact me on 07 3840 0823 or email natalie.walsh@msqld.org.au I look forward to hearing from you.

Natalie Advocacy Manager

MS LIFE – WINTER 2015

s e c r u o MS res

23

e pl o e p lp 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!

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MS Swimathon Sunshine Coast

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

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