MS Life Winter 2016 by MS Queensland

MSLIFE. WINTER 2016

MS QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

ANGELA'S STORY Saluting the Sun

PARKINSON’S DISEASE

PHYSIOTHERAPY SERVICE NOW OPEN

IS YOUR PHARMACIST

Health Team? IN YOUR

WHEN THE WORLD

TURNS RED FOR MS

FROM THE EDITOR

“WHEN YOUR VALUES ARE CLEAR TO YOU, MAKING DECISIONS BECOMES EASIER.” ROY E. DISNEY At MS Queensland we exist to help people living with MS to get the best out of life; to advocate for change, and to search for a cure. In this edition of MS Life, I wanted to remind you of the values that we live by here at MS Queensland as we go about this work. We strive to make sure our values of Respect, Hope, Commitment and Collaboration are present in everything that we do. These values underpin our determination to deliver our vision, purpose and mission. These values stay at the forefront of our minds when hiring staff, and in all of the activities that we undertake as we continue towards our long-term goals and projects that will make us a stronger organisation and deliver greater support to you, our customers. These four values are what we measure and take pride in when we think of what we stand for as an organisation. RESPECT: people really matter to us and so we show respect in all our relationships and interactions with others.

It’s been a busy first half to 2016, with a record MS Swimathon season, in which we saw the most participants ever take part in the 12 hour events. MS awareness month and World MS Day sent ripples around the globe as we highlighted independence and how MS doesn’t stop people living fulfilled lives. The 26th MS Brissie to the Bay bike ride saw thousands click up the kms and dollars in support of MS. We’ve also further developed collaborations and relationships with government, fellow PND organisations and the wider community to continue to raise awareness and improve the lives of those living with MS across this vast state. On the cover of this edition is Angela, who after being misdiagnosed and immobile for nearly 20 years turned to MS Queensland to help build an independent and happy life for herself (page 10). I hope you enjoy this edition and thanks for reading, Shontiele, Editor

HOPE: we never give up offering real hope, no matter how long it takes or how challenging the situation. COMMITMENT: we always do our best for our customers, our organisation and for each other. COLLABORATION: we believe the way to achieve great results is by working together.

MS LIFE – WINTER 2016

I invite you to share how you feel we are living these values in our interactions with you, to let us know what we are doing well or what we can improve on. Our contact details are on the next page of this magazine. Best wishes,

Lincoln, CEO

MS LIFE WINTER 2016

IN THIS EDITION

FEATURES

SUPPORT

REGULARS

PAGE 6 World MS Day Celebrations

PAGE 5 Parkinson’s Disease Physiotherapy Service

PAGE 6 A MOOving Cause

PAGE 8 MS Research Australia Public Lecture Series PAGE 9 Epstein-Barr T-Cell Clinical Trial Update PAGE 10 From the Cover: Angela’s now Saluting the Sun

PAGE 5 Mindfulness for MS PAGE 8 Spark NeuroCare PAGE 12 CountUp App

MS Queensland

member?

PAGE 15 MS Moonlight Walk is back! 26th Annual MS Brissie to the Bay PAGE 16 PwMS Support Group Update from Jenni PAGE 16 NDIS Update

PAGE 13 Questions with Tim: Pharmacists

PERSONAL STORIES

PAGE 17 Advocacy with Natalie

PAGE 18 The Little Black Book of deals is back!

PAGE 4 Physio Balance Clinic Testimonial

PAGE 18 MS Resources: MS & General Health

PAGE 7 The Alpha Mother’s Day Fun Run PAGE 7 MS Doesn’t Stop Me – Pam’s story

are you an

PAGE 14 MS Swimathons – Waves of Success

PAGE 15 MS Limited Edition Lotteries winner Patricia

CONTACT PHONE 07 3840 0888 INFOLINE 1800 177 591 FAX 07 3840 0813 MS Queensland, Locked Bag 370, Coorparoo DC QLD 4151

MS LIFE – WINTER 2016

FROM THE CEO

Dear readers,

visit msqld.org.au

3 Acknowledgement: We wish to thank Angela for the use of her image on the cover of this publication. Photo courtesy of Josh Kelly, Jack Harlem®

TESTIMONIAL I was diagnosed with MS in 2010 and like everyone, have various symptoms that I was trying to live with, believing this was now my lot in life. Recently my symptoms of a swaying sensation, dizziness and sometimes nausea were getting a little worse and causing me to avoid certain situations as much as I could, such as going into the major shopping centres and markets with friends. I was also tripping on a regular basis but hadn’t actually fallen yet, when I received a flyer from the MS Physio Department regarding a workshop on improving your balance and falls prevention. I decided this might be useful to prevent me from having a fall and knowing what to do if I did have a fall. The workshop taught us a series of exercises for several weeks and I could feel a difference in my balance in just a short time, which gave me confidence to attend Pilates classes. Whilst attending the exercise sessions Jackie, one of the Physiotherapists, picked up that I was having an issue with my vestibular system and suggested I attend an exercise program specifically to work on the vestibular system, which might help to address my symptoms of swaying sensation, dizziness and nausea.

MS LIFE – WINTER 2016

My original assessment, which was conducted with the use of a computer program, showed there was an issue with the vestibular system. So I embarked on a simple exercise program for 10 weeks and on completion, my final assessment on the computer program showed I had made great improvement when compared with the original assessment data. The best thing for me, was I did not have the swaying sensation on a constant basis. The dizziness/nausea I have when moving my head side to side has also diminished greatly and I am feeling so much better and have a lot more confidence to go out on shopping trips again. I hadn’t realised I didn’t have to put up with all the MS symptoms I was suffering. I greatly appreciate the time that Jackie from the MS Physio Department has spent with me and can’t believe a few simple exercises, which I am continuing to do at home, have improved my life so much. Julie

PARKINSON'S DISEASE PHYSIOTHERAPY SERVICE

MS Queensland has reopened its physiotherapy service to people living with Parkinson’s Disease and other less prevalent progressive neurological diseases (PNDs). Over the past six months the physiotherapy staff have been actively updating our expertise in Parkinson’s Disease. The staff have attended tailored workshops delivered by the University of Queensland physiotherapists specialising in researching physiotherapy in Parkinson’s Disease and Parkinson’s Disease specific lectures by Brisbane based specialists. As well as participating in exercise groups, such as the one day workshop on the evidence based PD Warriors Program, an exercise program based on the principles of neuroplasticity, neuroprotection and neurorestoration, which shows a reversal of symptoms for people living with early Parkinson’s Disease. As with MS, advances in neuroscience and the understanding of the role of exercise in Parkinson’s Disease are shaping the practices of physiotherapy and MS Queensland physiotherapy staff are enjoying playing a role in the health and wellness journey for people living with Parkinson’s Disease.

For more information about the new Parkinson’s Disease Physiotherapy Service or to arrange a consultation, call 1800 177 591 or email physio@msqld.org.au

Mindfulness for MS Mindfulness is a form of mind training adapted from eastern mindfulness meditation. It has been described as a state of being conscious of the present moment and accepting of things for what they are, i.e. without judgment. Mindfulness practice was originally developed to assist with mood regulation and relapse prevention in depression. It has since been found to have considerable health benefits for anyone who practices mindfulness regularly. For the past three years MS Queensland has been working with the University of Queensland to deliver and explore the benefits of Mindfulness practice for people living with MS. Early stages of research indicate that many people with MS have found great benefit from participating in the program. Some of these benefits include a reduction in depression, an improved ability to manage worrying thoughts and an increased sense of wellbeing.

For further information on the Mindfulness for MS program and when it will be coming to your area, visit msqld.org.au

This program has only been available to those living in the greater SEQ area, until recently. To enable access to the program

state wide, MS Queensland has worked with UQ to secure a licence to operate the Mindfulness for MS program. During 2016, this program will be rolled out across the state including to Hervey Bay, Toowoomba, Sunshine Coast, Cairns, Gold Coast and Rockhampton. Under the license agreement, the program must be delivered by a registered psychologist with experience in Mindfulness. MS Queensland has made a significant investment as a commitment to expand the reach of this program to people with MS throughout the state. The partnership with UQ has also led to a nomination for the UQ Partners in Research Excellence Awards 2016.

MS LIFE – WINTER 2016

PHYSIO balance CLINIC

KISS Goodbye

My name is Pam and with support and encouragement from my family, MS does not stop me living a fulfilled life. My children are always good for a chat and sharing their day to day stories. I am lucky to have them all living near.

CELEBRATIONS Wednesday 25 May marked another year when the world united to recognise and celebrate World MS Day in so many ways. In Queensland we were honoured to once again celebrate with Patron of MS Queensland, His Excellency the Governor of Queensland, the Honourable Paul de Jersey AC hosting a Reception to celebrate World MS Day. Mayor Paul Pisasale also celebrated with everyone who shared their 'MS Doesn’t Stop Me' story at an Afternoon Tea in Ipswich. Further awareness was raised in true Queensland style with fundraising events for Kiss Goodbye to MS, from collections at major train stations in the Brisbane CBD and having buildings and bridges lit up in red. MS Research Australia rallied support for the Kiss Goodbye to MS campaign, with researchers embracing Red Lab Coat Day and red-lipped ambassadors sharing the cause across social media. In Queensland, we

encouraged the community to organise fundraising morning teas, with funds to go to Kiss Goodbye to MS for research into a cure. Across our state, together with the nation and the world, MS communities showed their support of those living with MS. We at MS Queensland were particularly fortunate to have so many stories generously shared in support of the MS Doesn’t Stop Me! campaign. Great stories that we are sure our community will gain inspiration from, highlighting real-life everyday examples of what independence means to you and how MS doesn’t Stop you. We’ve included one of the contributions, from Pamela in this edition, and look forward to sharing more stories throughout the year. If you would like to share your story of living with MS and how MS doesn’t stop you, please send your story to Natalie Walsh by email to natalie.walsh@msqld.org.au

a MOOving cause Oakey cattle breeders, Dianne and David Priddle have kindly auctioned a steer again this year to raise funds for MS Queensland. Berwick ‘Dan’ weighed in at 636kg when he was sold on Monday 4 April at the Elders Saleyards in Toowoomba by Landmark Auctioneers, all of whom very kindly waived their fees and commissions in support of the cause. ‘Dan’ was bought by a Fernvale wholesale butcher, for $3.42 a kilo with a final sale amount of $2,185, all of which was donated to MS Queensland. MS LIFE – WINTER 2016

Dianne, who, after initially being misdiagnosed with QFever, has been living with MS since 2001. And together with husband David, has been raising stud quality cattle on their property for the past decade. It is a passion they share and one that Dianne doesn’t let her MS get in the way of. After fighting the need for a walking stick in recent years, Dianne realised that using her stick wasn’t a sign of ‘giving in’ but that it actually enabled her to continue doing the things she loved most, including walking into the paddock and yards with her beloved cattle. This unique fundraising activity, which has developed into an annual occurrence for the Priddles is another example of how those in the community can develop a Kiss Goodbye to MS fundraiser. If you’ve got a fundraising event and need some support to get it off the ground, contact Clancy on 3840 0887 or kissgoodbyetoms@msqld.org.au

‘Dan’ was bought by a Fernvale wholesale butcher, for $3.42 a kilo with a final sale amount of $2,185

pam

The first half of 2016 has seen some wonderful fundraising efforts across Queensland, with passionate people around the state doing their bit to Kiss Goodbye to MS. Shana Edwards, organiser of The Alpha Mother’s Day Fun Run tells the story of one of these amazing events. “This initiative started to show support to Kim, a young mother in our community who was recently diagnosed with MS. While there was nothing we could physically do to help, raising awareness was something we could actively be involved in and the idea of a ‘fun run’ was born. With support from MS Queensland, our local Council and a team of dedicated volunteers, our event was brought to life. On Sunday, May 8th 2016, Alpha hosted its first ever fun run to help ‘Kiss Goodbye to MS’. The reception from our close-knit community, which has less than 500 residents, was both overwhelming and inspiring. We had over 50 walkers and runners participate in the 2km and 5km distances and together we helped raise over $2500!” Well done to the lovely people of Alpha for your incredible support!

MS does not stop me in my work as a teacher aide and spending time with my grandchildren. These things are very important to me and I soon learnt that I had to manage my time carefully so that I could manage fatigue. Darcy, my husband, encouraged me to cut back at work so that I could spend valuable time in both. I now work 5 half days a week and spend some afternoons with my grandchildren. Heat does slow me down and my fellow staff members support me by being mindful of my duties on hot days. Every year a team, ‘The Mt Crosby Cruisers’ from my workplace walk in the MS Moonlight Walk. MS does not stop me from travelling. In 2013 I travelled to Europe with my husband, brother and sister-in-law for ten weeks and we are now planning to go to America in 2018. Travelling with medication does involve planning but did not prove difficult at all. MS does not stop me walking, I just have to walk early in the mornings in summer to avoid the heat. I got into the habit of walking daily, thanks to the support of a work mate. MS does not stop me enjoying life and cooking at home because when I get hot and grumpy in the heat, Darcy turns on the air conditioner and makes me sit with a cool drink. MS does not stop me because my medication has controlled the progression for the last 5 years and although it took a while to get into the routine of weekly injections and their effects, I can only be grateful that research into MS facilitated this. MS does not stop my retirement plans. Since being diagnosed in 2010, my husband and I have down sized our home to a unit that is easier to manage than our family home. We also find more time to travel in our little pop top van on weekends. MS does not stop me being excited about a new grandchild coming in October or having a picnic in the park with any of the other 4 grandkids. Writing this does make me stop and think how lucky I am to have all these wonderful reasons to not let MS stop me continuing to live my best life.

MS LIFE – WINTER 2016

WORLD MS DAY

to MS

MS DOESN'T STOP ME STORY

AUSTRALIA PUBLIC LECTURE SERIES MS Research Australia recently hosted a series of Public lectures around Australia, including Brisbane, providing an update on the latest MS research to people living with MS and their families. MS Research Australia’s Head of Research, Dr Lisa Melton and Deputy Head of Research, Dr Julia Morahan, along with local MS experts, provided updates on recent research progress and understanding of MS, new and emerging treatments and research into rehabilitation and symptom management. Interest in the public lectures was high, with over 800 delegates registering for the events and feedback has been extremely positive. The success of these public lectures would not have been possible without the talented researchers who kindly volunteered their time to present their work.

MS LIFE – WINTER 2016

As you know, MS Queensland provides specialised services to benefit people living with MS. Across the state, our Regional Service Coordinators work tirelessly to minimise the impact of MS on your life through the provision of local information, support, referral and advocacy. The value they provide in delivering coordinated care is significant and one which we are committed to continuing to deliver. This valuable service has not been available to many who live with other progressive neurological diseases (PND). We’ve joined with six other likeminded organisations to extend our coordinated care to those living with another PND such as epilepsy, Huntingtons, muscular dystrophy, Parkinson’s Disease and motor neurone disease. It will be trialled in Townsville for 12 months before extending to other Queensland locations. Our partner organisations in extending the service are Epilepsy Queensland, Huntingtons Queensland, MND and Me, MND Queensland, Parkinson’s Queensland and Youngcare. We are thankful for your continued support as we extend this service to those living with another PND who have, until now, not received the benefit of this coordinated care. Several additional service coordinators are now working with Emily in Townsville as Spark NeuroCare starts to accept new customers. Be assured that our dedication and commitment to our MS customers will not change.

Due to a generous grant from the Cromwell Property Group Foundation the lectures were able to be hosted in each state and the Melbourne lecture was filmed and has been made available to view at msra.org.au With the overwhelming positive feedback from attendees, MS Research Australia and MS Queensland will continue to work together to keep the MS community informed about exciting developments in MS research.

If you have a friend or family member in Townsville with another PND that you feel would benefit from this service, please encourage them to contact the Spark NeuroCare team by calling 07 4412 7700 or seeking more information from sparkneurocare.com.au

CLINICAL TRIAL UPDATE PHASE 1 CLINICAL TRIAL OF AUTOLOGOUS EPSTEIN-BARR VIRUS-SPECIFIC T CELL THERAPY The Phase 1 Clinical Trial of Autologous Epstein-Barr virus-specific T cell therapy based at the Royal Brisbane and Women’s Hospital, led by Professor Michael Pender (UQ) and Professor Rajiv Khanna (QIMR Berghofer) has commenced and is progressing well. The Epstein Barr virus (EBV) has been implicated as having a role in MS, and Professor Pender’s work over many years has revealed that people with MS may be less efficient at clearing EBV infected cells from the body. This trial aims to target that, by priming the T immune cells of people with MS to recognise and destroy EBV infected cells. Participants for this 10-patient safety trial have been identified and treatments have begun in the first of these patients. The trial will take approximately 24 months to complete, with patients being followed to check first and foremost for safety of the treatment. Patients will also be monitored to look for any signs of improvement in disease symptoms. This trial is a collaborative effort between the University of Queensland and the QIMR Berghofer Medical Research Institute with funding support

from MS Queensland and MS Research Australia, to accelerate understanding and potential treatments for people living with MS and we are particularly excited about this trial and its focus on progressive forms of MS. Due to the strict ethical and procedural requirements for an ongoing clinical trial, we are not able to share very much detail about the progress of this Phase 1 trial. However, we will continue to provide brief updates as the trial continues and the full findings will be shared in the months following the conclusion of the trial and publication of the results Funding for this trial would not have been 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 one-step closer to our vision of “a world free from MS and its devastating impact”.

MS LIFE – WINTER 2016

MS RESEARCH

Great service gets even better

ANGELA'S

STORY SALUTING THE SUN

To look at Angela today, it would be hard to understand how far this independent young woman has come. After being misdiagnosed for nearly 20 years, with her mobility deteriorating until she was bed-bound and unable to speak, her identity and confidence was stripped away. However in 2010, Angela’s world changed when she was correctly diagnosed with having MS, after finally receiving an MRI.

After living in isolation for so many years, Angela was left feeling anxious about being around people, but step by step she has transitioned from private physiotherapy sessions, to group workshops and now excitedly attends local yoga classes and cafes with friends.

The clearest indication of Angela’s strength and determination has been her improved mobility and strength, for which she credits her commitment to physiotherapy and yoga, priding herself on keeping active along with being outside in the sunshine, as being her greatest therapy and medicine. Angela’s next goals of gaining part time employment and finding a companion to share her life with will inevitably be realised, but for the moment being able to share a coffee with friends is just as symbolic of how far she has come and how a diagnosis of MS finally opened the door to her life.

To find out more about the services we offer and how MS Queensland can collaborate with you to achieve your goals, please visit our website msqld. org.au or contact our Infoline on 1800 177 591 or email info@msqld.org.au

MS LIFE – WINTER 2016

After nearly two decades of pleading with medical professionals to help their daughter, receiving a diagnosis was a turning point for Angela’s parents and they reached out to MS Queensland for help. We rallied a multi-disciplinary team to provide support and education to Angela and her parents, whilst working with practitioners on a plan for the future. MS Queensland was a huge comfort and relief to Angela's family. Angela accessed a full range of MS Queensland services such as physiotherapy, psychology, group programs, fatigue management, information workshops and help organising in home support services and appropriate accommodation. In 2012, Angela was thrilled to live her dream of independence when she moved into an independent living unit. After being told she couldn’t live alone for so many years, this was a dream come true.

CountUp App Developed by a daughter for her dad with MS Garry, who is 72, has had MS for over 30 years. Before being diagnosed, Garry was very fit, including running marathons. Now confined to an electric wheelchair, his fitness routine is focused on physical exercises to maximise his strength and reduce his pain. “When Garry’s physio suggested he track his progress, I couldn’t find anything to help him do it,” daughter Lucy said. “I like to run and my husband likes to cycle - both of us use apps to track our progress and motivate ourselves. But when it comes to rehab, there just wasn’t anything available.”

As is the case with any exercise program, if you can’t see progress, it can be hard to stay motivated and it can be tempting to give up. CountUp allows a patient to record what they actually achieve. For example, you may be prescribed 10 reps of an exercise but you can only do 4. Instead of feeling defeated, if you do 5 the next day, you can already see that you are making progress. And once you CountUp is a have recorded results, the motivation is there to keep up privately developed the good work. Conversely, if you are simply not completing app, available for your prescribed exercises, you have some evidence to $2.99 from the discuss with your physiotherapist so that they can alter your Apple App program accordingly. Store

Personalised exercises videos

Simple and easy to use

Your physio professional can record you doing your exercises as prescribed. Watch before exercising to ensure you remember the correct moves.

Add exercises then use the touchscreen or duration timer to record your progress. You can add exercises manually if you didn’t use the touchscreen recording.

Customised exercise list

MS LIFE – WINTER 2016

In conjunction with your support professional, add your own exercises. There is no default list. My Progress reminds you how many more exercises you need to complete that day. Real-time tracking The touchscreen allows you to record each rep you complete or the exact duration you exercised. You know exactly what you completed and when.

Measure your progress Stay motivated by reviewing your exercise progress over time. Personalised videos allow you to compare and contrast your progress over time.

Share your data CountUp gives you a record of your progress to discuss with your health professional.

WHO IS IN YOUR HEALTH CARE TEAM?

PHARMACISTS QUESTIONS WITH TIM

Understanding how a range of different medications can interact is another complexity to living with MS, but who can you turn to for support in this area?

It is an unfortunate reality that many people with MS need to take medications – sometimes lots of them. Everything from long term Immunotherapy treatments, to medications to manage symptoms, to vitamins, minerals and supplements, lotions and even the occasional potion. And of course you are still human so you can get sick like everyone else. Many medicines – prescriptions, over the counter or even things you buy at a supermarket or health food store may have interactions that reduce the benefits or increase the side effects of others. Your pharmacist is the expert in this area. Some medicines even have certain foods that you should avoid while taking them – and it is your pharmacist who is most likely to give you this information. Some of you may know your local pharmacist very well. I suspect many of you may not and as such may not know exactly how much help and support a pharmacist can be. This is a pretty amusing website - whatpharmacistsdo.org but it shows how your

pharmacist is a part of your health care team. In fact they are probably one of the most accessible you have and the benefits you may gain from talking with them are endless. And there is more to them than just dispensing medications and advice on possible interactions. If you are struggling to remember to take your medications they can help. If you need equipment to cut or crush medications, they can help – or tell you which medicines you should not cut or crush! If you struggle to get medicines out of the packaging – they can help. This is not meant to be an advertisement for pharmacists. Remember like everyone you ask to be a part of your health care team, they work for you. But if they can give you great service, then they are there to support you.

For more information please contact one of our Nurses via our InfoLine on 1800 177 591.

MS LIFE – WINTER 2016

So Lucy decided to develop an app herself: the result is CountUp, a rehabilitation exercise tracker, now available on the Apple App Store.

On Friday 21st October, thousands of people from the MS community will be taking part in the annual MS Moonlight Walk. Join us for a 5km or 10km walk around the Brisbane River, and help us raise $600,000 to continue to support those living with MS.

We’ve reached the end of our biggest ever MS Swimathon season with $222,947 being raised by 942 participants over nine events. Our overall highest fundraiser was 15 year-old Luke Fraser from Toowoomba who raised an incredible $3,765 for people like his dad, Dave, who was diagnosed primary progressive MS in 2009 at the age of just 33. Over the last two years Luke and his mates have raised over $10,000 to support people like his dad who are living with MS in the Toowoomba region. “I chose to get involved with the Swimathon to raise money to find a cure for MS, to help people with MS and bring awareness to MS. I also swam to show my Dad that I love him and support him.” Luke is a very special young man and it is a privilege to see him and his mates ‘Doing it for Dave’. Efforts have now turned to preparing for the 2016/17 MS Swimathon season, with an earlier kick off this year, starting with the Sunshine Coast Swimathon on Sunday 11 September at the Cotton Tree Aquatic Centre.

20160422 MS Qld 252 x 87 WINTER OL.pdf 1 22/04/2016 4:26:55 PM

MS LIFE – WINTER 2016

SUPPORTING THE MS CAUSE

F O S E V WA S S E C C SU

We’re also very excited by the opportunity for us to expand the Swimathon calendar to 10 swims with the inaugural Hervey Bay Swimathon being announced to the public next month. There is a large and supportive MS community in the Fraser Coast region, so we’re very excited that those living in Hervey Bay, Bundaberg and Maryborough will be able to join in the Swimathon movement! While registrations are not yet open, you can register your interest for any of next season’s swims by going to MSswimathon.com.au and clicking on the relevant ‘Register Your Interest’ page then we will get in contact with you when registrations open!

Each walker will receive their own lantern to light up the sky and show their support of those living with MS. It’s a spectacular sight to witness the sea of lanterns as the 10km walkers stroll under the spectacularly illuminated Kangaroo Point Cliffs and over the Story Bridge. Walkers then make their way through Brisbane’s lush Botanic Gardens before crossing the Goodwill Bridge at QUT to return and join in the celebrations at South Bank with delicious food and drink vendors onsite. Who will you be walking with? Spread the word and get your family, friends and colleagues on board to join thousands of proud Queenslanders as we step out to raise the vital funds needed to support those living with MS and to search for a cure. For more information and to sign up visit MoonlightWalk.com.au

MS LIMITED EDITION LOTTERIES Our last MS Limited Edition winner has a long history of supporting not-for-profit organisations and is on the board of Queensland’s longest running NFP trust. A very deserving winner, Patricia has been a regular lotteries buyer and took a while to believe her win was real.

CMY

“I wanted to say a great big thank you to MS. It was certainly a very big surprise which took some days to believe it was true. As you know I have been buying tickets for many years. MS is a very worthy cause so I will continue with my auto buy ticket purchasing.”

As this edition goes to print, we are putting the finishing touches on the 26th annual MS Brissie to the Bay. As you read this, thousands of riders will have joined forces on Sunday 19th June, in the fight against MS to raise a record-breaking amount to support those living with MS. Our riders are still busy fundraising, so check out the website BrissietotheBay.com.au to see the total amount raised. You can also check out photos from the day on the Brissie to the Bay facebook page. A BIG THANK YOU to all of our riders, donors and sponsors who helped make this another successful event!

MS LIFE – WINTER 2016

SUPPORTING THE MS CAUSE

S N O H T A M I MS SW

we help

influence

change

PWMS SUPPORT GROUP UPDATE

Advocacy Natalie WITH

The NDIS is rolling out across Queensland and MS Queensland is ready to help you understand what it could mean for you. For many, it will be a while before the NDIS is available in your area, but that doesn’t mean that you can’t begin to prepare – knowledge is power! Although you can’t register in advance, you can find out as much as possible about the supports and services that will be available through the NDIS, and the process involved for you to apply for them. The first thing you need to do is find out if you are eligible. While many people don’t necessarily associate themselves with the term ‘disability’, you could still benefit from the NDIS. Its benefits are focused on supports that will assist your capacity to live your life every day. Think about the impact of (for example) fatigue, or mobility and sensory changes. Ask yourself, whether the supports and services available through the NDIS can help me with these? The next step is to identify your needs, goals and current supports, then start the planning process. MS Queensland can help you consider the things that impact your capacity to live your life every day and the supports and services available through the NDIS that might help you. The more you prepare, the better your NDIS plan will be at providing the support you need. Being guided by you and your needs, we can support and advise you through this important time.

MS LIFE – WINTER 2016

It can be hard to understand the NDIS and what it means for you but you don’t have to work through it alone – if you’d like to talk to someone about it, we’re here to help whenever you need us. You might like to hear how others have benefited from the NDIS, there are many stories from participants available on our website.

Want more info? Call the MS InfoLine on

1800 177 591, email ndis@msqld.org.au, or visit msqld.org.au/ndis

2016 marks the roll out of the NDIS in Queensland, which will be fulfilled by January 2019. Interesting times ahead for the much heralded NDIS package, individualised for each person. Throughout this time of great change MS Queensland is here to help whenever you need it. For any queries, contact the Infoline team on 1800 177 591. May was MS awareness month, and celebrated throughout Australia and across the world. I hope you will enjoy the update of all of the World MS Day activity included in this edition; in particular one of the World MS Day – MS Doesn’t Stop Me stories that have been shared. The MS Brissie to the Bay bike ride fundraiser held on Sunday 19 June was, as always, a fantastic day. The riders loved to come over the finish line to a cheering crowd. The fight to find a cure for MS has never been as imperative as it is in this present time. Let’s keep the ‘awareness’ in motion for all who live with MS! Blessings, Jenni

Let’s keep the ‘awareness’ in motion for all who live with MS

On 5 May, the Commonwealth Parliamentary Friends of MS, Senators Deborah O’Neill and Senator David Bushby hosted the launch of the Election Submission from MS Australia at Parliament House, Canberra. Ten election commitments were put forward, seeking support from all parties ahead of the federal election, on behalf of Australians affected by MS.

CEO of MS Australia, Deidre Mackechnie shared the importance of the submission.

The submission included: • The importance of continued investment into research as MS researchers get closer to finding a cure for MS and to improve both treatments and prevention; • How a worrying number of people living with the condition are not having their needs met within the current healthcare system; and • The growing economic cost of MS in Australia and how it could be greatly reduced by streamlining services and support, ensuring people with the condition are diagnosed and treated as early as possible.

“As we approach this election we need to ensure that every federal electoral candidate knows exactly how they can help people with MS live full and independent lives.” If you have an issue that is important to you, pick up the phone to your Federal Member – they are there to hear the issues that are of importance to you. If you have any further queries regarding the Federal election and MS Australia, please contact info@msaustralia.org.au or natalie.walsh@msqld.org.au

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MS LIFE – WINTER 2016

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S E C R U O MS RES MS & GENERAL HEALTH

2016/17 Entertainment Books now for sale

THE LITTLE BLACK BOOK OF DEALS IS BACK!

Ever found yourself wanting a little black book of deals and savings that gives you an excuse to go to that new restaurant? MS Queensland is pleased to be selling the Entertainment Books again this year which is just the book you’ve been looking for! Each membership has hundreds of 50% off and 2-for-1 offers for restaurants, cafés, attractions, hotels, shopping, groceries and travel, containing over 2,000 offers that you can use whenever you like until 1 June 2017. But the best deal of all is that 20% from of 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 purchasing a book and letting your friends and family in on the scoop too! Choose from the traditional Entertainment Book or the Entertainment Digital Membership, which puts the value of the Book into your iPhone or Android smartphone! Ordering is easy: • you can order your books online at msqld.org.au; • call us on 07 3840 0888 or email mssociety@msqld.org.au to order your book and have it posted; or

MS LIFE – WINTER 2016

• visit our office between 8:30am and 4:30pm Monday to Friday to purchase in person.

Looking after our general health and wellbeing is essential for everyone, including people with MS, their families and carers. Taking care of and prioritising general health needs helps everyone affected by a diagnosis of MS to live well and maintain optimum health levels. At MS Queensland, we have various resources to help manage general health, such as these three: Ageing with MS This booklet contains information on ageing with MS, from normal age-related changes to those resulting from MS. It discusses some common concerns, questions and self-management issues.

Are you sitting comfortably..? Simple changes in posture can have a beneficial impact on anyone who spends most of their day seated. This self-help guide provides information on good posture for people with MS, along with their families and carers.

Food for Thought This booklet offers information about the effects diet can have on symptoms of MS, such as fatigue, emotions, constipation and swallowing. It also provides nutrition basics for living a healthy, balanced life with MS.

For a copy of these resources or to seek

further information please contact our InfoLine on 1800 177 591.

The NDIS and Continence Care... Are you ready? The National Disability Insurance Scheme (NDIS) is set to start rolling out nationally from the 1st of July 2016. This will represent a significant shift in the way that people with a long term disability access their products and their care. Coloplast as a leading provider of products for intimate healthcare needs want to support you on this journey being a trusted partner for information, support, and the tools that you will require to get the best continence care for your condition. To pre-register for information and support please visit www.coloplast.com.au/register-NDIS

E L P O E P P L E H T A H T S T N E V E WITH MS LIVING

For more information contact the MS Queensland events team on 07 3840 0828 or email events@msqld.org.au

11 SEPTEMBER

16 OCTOBER

21 OCTOBER

MS Swimathon Sunshine Coast

MS Swimathon Griffith Sport Mt Gravatt

MS Moonlight Walk

MSswimathon.com.au

06 NOVEMBER

12 NOVEMBER

MS Swimathon Jindalee

MS Swimathon Toowoomba

MS Swimathon Hervey Bay

MSswimathon.com.au

MoonlightWalk.com.au

W 27 NOVEMBER

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. ÂŠ 2016 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.

Y A D O T E T A DON HELP SUPPORT MS QUEENSLAND

DONATION:

I would like to give a tax deductible gift of $25 $45 $40 Surprise us! I would like to make a monthly credit card donation of $

per month

PAYMENT METHOD:

PLEASE RETURN THIS FORM TO: MS Society of Queensland Locked Bag 370 COORPAROO DC QLD 4151 OR Phone: 1800 CURE MS (1800 2873 67) OR Fax: (07) 3840 0813 OR secure web donations msqld.org.au/donate

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MSWIN16

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