MS Life Autumn 2016

MSLIFE. AUTUMN 2016

MS QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

glenn's story Building his life with MS

WORLD MS DAY MS DOESN'T STOP ME Kiss Goodbye to MS

goes GLOBAL

NEW

Nurse assessment clinics

FROM THE CEO

FROM THE EDITOR

“The bad news is that time flies. The good news is that you’re the pilot.” Anonymous

Dear readers,

The crazy-busy start to this year has just flown for everyone at MS Queensland with so many new and inspiring projects being delivered to help support people living with MS right across this great state. We’ve got plenty more things planned for the rest of the year so it’s certainly shaping-up as a big one and will be over before we know it! Time flies when….

Most importantly, after many years of waiting the NDIS will launch in Queensland in less than three months’ time! As I write this, the finer details of the rollout schedule have just been released, and know that MS Queensland is here to provide expert support and advice every step of the way to ensure you achieve your unique goals and aspirations through the NDIS (page 6). If you want to find out what the NDIS could mean for you, I encourage you visit our website msqld.org.au/ndis While big new initiatives such as the NDIS commence, MS Queensland is also staying committed to ‘regular’ activities including our support of MS research through Kiss Goodbye to MS (page 13), MS Swimathons (page 12), the 26th MS Brissie to the Bay (page 13) and awareness raising through the 2016 World MS Day activities (page 14).

Of course, our focus always remains on people living with MS and other progressive neurological conditions, so I hope you find our cover story about Glenn (page 10) and the commencement of Nurse Assessment Clinics (page 15) of inspiration and interest.

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Wherever you find yourself on the MS journey, please reach out at anytime and make us your first choice for MS information, education, treatment care and support in Queensland.

Best wishes,

Lincoln, CEO

March is already here and Easter is nearly on our door step for another year. This time of year also signals the number of exciting activities ramping up for MS Queensland and the MS community around the world!

Training for the 26th annual MS Brissie to the Bay bike ride on Sunday 19 June is well underway, with a strong number of riders returning from last year and fundraising in full swing. We’ve included a story about 100km rider Charlie, who is riding in support of his wife Jenny again this year (page 13).

For World MS Day 2016, we’re celebrating all the ways that people affected by MS maintain independence and get on with their lives post-diagnosis. By sharing examples of independence from around the globe, we want to inspire people to challenge perceptions of what people living with MS can do. There’s more information in this edition (page 14) on how you can get involved with World MS Day, particularly on 25 May. On the cover of this edition is Glenn, who built his home with his own hands, a lot of sweat and truck loads of determination. Glenn’s passion was to see his family grow, and to continue calling the place he built, his home. After living with MS for nearly 20 years and being actively involved in the MS community, Glenn needed support in building a ramp to more safely access his home, and MS Queensland was there to offer that support (page 10).

Thanks for reading and I hope you enjoy this edition, Shontiele Editor

MS LIFE AUTUMN 2016

in this edition

FEATURES

SUPPORT

Regulars

PAGE 5 Kiss Goodbye to MS goes global

PAGE 4 National support for carers

PAGE 5 MS Research Australia new projects in 2016

PAGE 9 Improve your balance with physiotherapy

PAGE 7 A self-management approach to living with MS

PAGE 6 NDIS Update

PAGE 10 From the Cover: Glenn’s building his life with MS

PAGE 8 Our physiotherapy clinics are expanding

PAGE 14 Get involved in World MS Day ‘MS Doesn’t Stop Me…’

PAGE 15 The role and support of an MS Nurse

PAGE 17 MS Advocacy in a Federal Election year

personal stories

PAGE 12 Ride the wave of MS Swimathons PAGE 13 Queenslanders are embracing KGMS PAGE 16 PwMS Support Group Update from Jenni PAGE 18 MS Resources: Living well with MS

PAGE 8 Alycia’s spirit test, lifts others

contact

PAGE 13 Charlie’s gearing up for 100km

Phone 07 3840 0888 InfoLine 1800 177 591 Fax 07 3840 0813

PAGE 16 Annie and her Angels

MS Queensland, Locked Bag 370, Coorparoo DC QLD 4151

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PAGE 7 10,000 Steps Challenge

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

LIVING WITH MS

SUPPORT FOR CARERS MS Queensland recognises and understands the significant load on carers for those living with a progressive neurological condition. The Australian Government through the Department of Social Services has also identified the need for carers to be able to access from a single source, practical information and resources to help them in their caring role.

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The Carer Gateway is an aggregated portal developed to provide information about the services and support available for carers both online and by phone:

Carer Gateway website also has information for different types of carers including young carers, older carers, working carers, Aboriginal and Torres Strait Islander carers, and culturally and linguistically diverse carers.

Telephone: Carers can call 1800 422 737 from Monday to Friday between 8am and 6pm for information about services and support available.

This new service does not affect how carers currently access their existing support services but is an information and resources hub.

Website: A range of information including practical advice on how to care, details about financial and respite support, and how to adjust when caring ends, can be accessed at carergateway.gov.au Service finder: The website has an interactive service finder to help carers identify local services, including Commonwealth-funded organisations delivering carer support services.

Looking for more?

Carers Queensland is the peak body representing and advocating on behalf of carers throughout   Queensland, with a If you need advice number of valuable on how to access resources available support as a carer in your on their website local area, please contact carersqld.asn.au your local Regional Service Coordinator or the Infoline team on 1800 177 591.

MS Research Australia

announces new projects for 2016 MS Research Australia recently announced 24 new research projects to receive funding beginning in 2016. The new grant recipients were selected from a highly competitive pool of applications from researchers all around Australia. The new grants span a wide range of research domains including genetics, myelin repair, vitamin D, psychology, physiotherapy, and epidemiology.

Two Queensland researchers were successful in receiving funding, including a major three-year Project Grant awarded to Professor Alan Baxter from James Cook University to support his work using immune gene networks to understand disease risk in MS.

the USA, working to develop a novel technique for training memory and thinking skills.

Dr Matthew Miles, MS Research Australia Chief Executive Officer said "2016 represents another great year for MS research. The variety of new projects showcases Australia’s research strengths, but also provides the diversity that is crucial if we are to continue to make progress towards finding answers for people with all different types of MS."

Dr Hannah Gullo from the University of Queensland received an Ian Ballard Travel Award to spend four weeks at the Kessler Foundation in New Jersey in

For more information on the numerous research projects on MS underway in Australia, visit msra.org.au

KISS GOODBYE TO MS Kiss Goodbye to MS is a national fundraising campaign raising funds for research into MS. In 2016, Kiss Goodbye to MS, a MS Research Australia initiative, has been introduced by the MS International Federation as the global fundraising campaign to raise funds for MS research around the world.

Since January 2016 the USA, France, Sweden, Greece, Mexico, Argentina and Ireland have introduced Kiss Goodbye to MS in their own countries, with Denmark and New Zealand to

come on board in May. As Kiss Goodbye to MS grows, awareness for MS continues to build, with thousands of people showing their support on social media.

In 2015 Kiss Goodbye to MS raised over $1 million for MS research in Australia and we are hopeful that in 2016 this success will be replicated in each country. The world is coming together to increase the funding available for research globally. Join us in raising funds and awareness to Kiss Goodbye to MS, once and for all!

MS LIFE – autumn 2016

The implementation of a global fundraising campaign is a first in the world of MS, pioneering the way for a cohesive, global approach to raising the profile of MS research. The adoption of Kiss Goodbye to MS globally has the potential to change the landscape of MS research, resulting in increased funding available for research projects and accelerating research developments.

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For further information, please contact Nicky or Rachel on InfoLine 1800 177 591, email us at ndis@msqld. org.au or learn more at msqld.org.au/ndis

MS Queensland and our wider community are excited about the commencement of the National Disability Insurance Scheme (NDIS) in Queensland. It will enable a better life for people living with a disability and for their families and carers.

1 July 16 Palm Island (all ages), Townsville and Charters Towers (under 18 years)

From July 2016 the NDIS will be rolled out geographically by local government area. Eligible residents will transition into the NDIS at different times up until 2019, depending on where they live.

1 November 16 Mackay, Isaac and Whitsundays

Existing national and state-based services and supports will continue until all eligible people with disability start their plans with the NDIS. We’ve listed, to the right, a summary of the rollout timings and indicative areas, with more details available on our website msqld.org.au/ndis

CAN I ACCESS THE NDIS? There are a number of requirements, explained in detail at ndis.gov.au/people-disability/access-requirements In summary you need to • be living where the NDIS has begun to operate • meet Australian residency requirements • meet early intervention or disability requirements • under 65 years of age at time of rollout in your residential area.

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1 October 16 Townsville and Charters Towers (over 18 years), Hinchinbrook, Burdekin, west to Mount Isa, and up to the gulf

1 January 17 Toowoomba and west to the borders 1 July 17 Ipswich, Lockyer, Scenic Rim and Somerset 1 October 17 Bundaberg 1 January 18 Rockhampton, Gladstone and west to the borders 1 July 18 Brisbane suburbs both north and south of the Brisbane River, Logan and Redlands, Gold Coast and hinterland, Fraser Coast, North Burnett, South Burnett and Cherbourg, Cairns, Cassowary Coast, Tablelands, Croydon, Etheridge, Cape York and Torres Strait 1 January 19 Moreton Bay including Strathpine and Caboolture, Sunshine Coast, Noosa and Gympie When you’re ready to find out more about the NDIS, MS Queensland is here to guide you and help you initiate the first steps in accessing it.

LIVING WITH MS

A SELF MANAGEMENT APPROACH

There is growing interest in a 'self-management' approach to living with a chronic condition.

Self-management is not about leaving an individual to manage on their own. Instead it places the person at the centre of their care, assisting them to gain knowledge, skills and confidence to take a proactive approach to living.

Townsville

10,000

steps challenge

In essence, self-management is about what the person with MS does to manage their illness and what health care practitioners provide to assist the person with MS. It is about a partnership where health professionals assist with the provision of information, support, problem solving and goal setting.

MS Queensland is committed to supporting people with MS to gain the best quality life possible. Our services and programs focus on building your knowledge of MS, skills in managing MS and sourcing the supports you need over time.

During 2016 we have tailored a suite of programs and workshops with a selfmanagement focus. They aim to complement our existing one to one support services. For more information please visit our website msqld.org.au

The founding members of the North Queensland People with MS 10,000 Steps Challenge team are encouraging everyone to take part, as they have experienced incredible achievements as individual participants and as a group.

The 10,000 Steps Program was set up by CQ University in 2004 and funded by the Queensland Government. It is a FREE health promotion program that encourages the use of step-counting pedometers to monitor your daily physical activity levels. You can log your steps online as well as form teams, access virtual challenges and even create your own.

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The 10,000 Step Challenge promotes fun and 'healthy' competition amongst groups and it is a great way to bring those living with MS together. Being part of a team means that everyone can participate irrespective of how many steps they can manage.

For more information visit 10000steps.org.au or email NQPwMS@gmail.com for tips on how you can form a challenge team!

MS LIFE – autumn 2016

Over time most people living with MS develop a management ‘tool kit’, learning the importance of: physical activity; getting adequate sleep; accessing the right medication; communicating their needs to others; managing emotions and uncertainty. A self-management approach would include working with your health care team to identify your goals, for example, managing fatigue and developing strategies and supports to gain skills and confidence in this area.

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Personal Story Alycia’s Spirit Test, lifts other’s spirit.

The physical and mental determination required when being physically knocked to the ground over and over again for 75 minutes is astounding, but for Victoria Point local Alycia, this was all part of her Hapkido training to receive the ultimate black belt achievement.

The Kwan Nyom Hapkido spirit test is a brutally physical and mental test, certainly not for the faint-hearted as it is designed to push candidates to the point of giving up and beyond to test their spirit and teach them to never give up when their life is on the line.

MS Queensland Physiotherapy Services

Last November, after 75 minutes of combat with her peers in a martial arts setting and forced to perform other gruelling physical challenges, Alycia successfully completed the unremitting spirit test and was awarded the honourable title of black belt.

In the MS Life Summer edition, our physiotherapy service expansion activities were revealed. Since then three new physiotherapy clinics have been established at Cleveland, Caboolture and Nambour, with the total number of physiotherapy clinics being more than tripled in two years. Customers from these communities have been supportive and appreciative of the opportunity to access MS specific physiotherapy advice, close to where they live. The physiotherapy team are excitedly planning more clinics for the year ahead!

Alycia has had to push her mind and body to extremes during her training regime in the lead up to completing the spirit test.

Being praised by her Hapkido peers as an inspiration, for not only choosing to not let her MS related symptoms get in her way, but for her unwavering support of comrades as they faced the gruelling challenge together.

Congratulations Alycia on your achievement!

In partnership with YMCA Heartmoves, we are continuing to create appropriate and safe, fitness groups across regional Queensland. The first Heartmoves for MS group in 2016 has been established at the Sunshine Coast and many more are planned for 2016. Group development relies on the support of the MS community, so please take the time to communicate your interest with our staff when the opportunity arises.

If you would like to share a story of someone you know who doesn’t let MS get in their way, please email mslife@msqld.org.au as we would love to hear from you!

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The YMCA Heartmoves partnership allows MS Queensland to expand the reach of safe and appropriate exercise options, and compliments our other established exercise group partnerships. Working together with formal partners, the physiotherapy service continues to support existing exercise programs on the Gold Coast (MS Fitness Program), Toowoomba (Healthy Steps Fitness Program), Victoria Point (Fit for Life) and Beenleigh (Fit for Life).

For more information or to speak to our physiotherapy team, please call Linda Wilson-Marks on 07 3840 0841.

Physiotherapy Good balance needs many different parts of your body to work together effectively and can be thought of as a partnership between input, processing and output.

How can MS affect your balance?

Input Dependent on receiving accurate information from sensory systems (vision, vestibular system, receptors in joints, muscle and skin).

Visual problems, such as blurred or double vision, can give confusing information to the brain when it tries to work out where the body is moving relative to the world around it. estibular system (inner ear) constantly updates your brain about the angle and V position of the head. If the message pathway between your inner ear and brain is disrupted or missing, it can lead to balance problems. hanges in sensation, such as numbness or tingling, might mean that the brain may C not be receiving accurate information it needs, to balance your body properly.

Processing

Output

The brains ability to process this information.

The muscles and joints coordinating movement effectively.

The way your brain processes balance information is complex.

Nerve damage due to MS in these areas can affect the processing of the information.

MS can cause a wide range of symptoms that can have an effect on balance, including difficulties with coordination, tremor, muscle weakness, stiffness and spasms. These symptoms may mean that your muscles are not able to respond to the instructions being sent to them by your brain.

A Neurological Physiotherapist skilled in treating patients with MS, can assess your balance, look at what deficits are contributing to your balance problems and recommend an exercise program that can help improve your balance.

As part of this assessment process, a Physiotherapist may enlist technology, such as the Humac platform, which is stood on to detect centre of pressure and weight bearing surface of a patient, and displays the information on a computer. It can be used to detect which balance inputs are affected.

Numerous studies have shown that you can address balance problems by challenging them. A program that is safe, yet pushes you to your limits can gradually improve your balance.

MS LIFE – autumn 2016

How to improve your balance

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GLENN'S

STORY BUILDING HIS LIFE WITH MS Glenn is a stoic man who has built his life, career and family around the principles of hardwork and determination. A carpenter by trade, Glenn was officially diagnosed with MS in 1997 but had experienced numb legs much earlier in 1987, when his symptoms unfortunately resulted in losing his job at the time. For such a proud man and hard worker, it was a difficult time for Glenn, but after a few weeks his symptoms subsided and he started his own very successful kitchen building business.

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When Glenn and wife, Nicole decide to leave behind the Sydney area in 1994, before the Olympics, it felt comfortable for them to return to Queensland and find their very own piece of land, build their own home and live a country lifestyle. Glenn had completed his apprenticeship in Toowoomba, so when they found the perfect block between Aratula and Warwick, Glenn was able to channel his passion as a carpenter to build their home, even digging the post holes by hand.

Over the years, Glenn’s MS has progressed and after a long history of supporting the MS cause, when it came time for Glenn to consider the need of adding a ramp to maintain access in and out of his home safely, then MS Queensland was there to support him.

In 1997, Glenn’s numb legs returned, this time with double vision, he was referred to a Neurologist who performed an MRI which delivered the diagnosis of MS. Although the initial diagnosis “totally floored us” in Glenn’s words, he was thankful that his Neurologist suggested they contact MS Queensland.

After his years as a carpenter, cabinet maker and school woodwork teacher, it is understandable that Glenn can’t kick the ‘builder’ bug. He now is a member of the Men’s Shed Association offering his woodwork skills to perform maintenance duties free of charge, makes birdhouses to sell at the Aratula shop and works on the silky oak carriages at the Warwick steam train precinct, making dining tables for inside the carriages.

Having someone only a phone call away to ask anything, was a comfort to Glenn and Nicole, with that initial support developing into a long relationship. Glenn has been an active member of the MS community over the years, as a State Council Delegate for People with MS in Queensland, even travelling to Melbourne and Berlin for the international conferences. He has also dedicated the last seven years attending schools to promote the MS Read-a-thon and educate the next generation about multiple sclerosis.

“I had a couple of falls on the front steps, and having the ramp is my saving grace. It has made a huge difference in enabling me to safely get outside, go into my shed or potter around the yard.”

Now with the ramp add-on, Glenn is able to maintain his passion for volunteering and active lifestyle in his local community, enjoying growing old with his lovely wife, in the home that he built with his own hands, after selecting each and every piece of timber that makes up the incredible Queenslander with a wraparound veranda.

MS LIFE – autumn 2016

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

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SUPPORTING THE MS CAUSE

S N O H T A MS SWIM

E H T E RID WAVE

The 2015/16 MS Swimathon has already had a stellar season with great results in Brisbane, Toowoomba, Gold Coast and particularly at our inaugural MS Swimathon on the Sunshine Coast, where over 100 participants made the effort to take part. Across the pool there were some amazing stories, massive efforts of endurance and stamina, driving a huge fundraising effort to collectively raise $22,221.

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There were many people in the MS community who made the Sunshine Coast MS Swimathon possible, including Tas, our very popular Regional Service Coordinator on the Sunshine Coast who not only organised his own team, but took out the award for the highest fundraising team.

We were also blessed to have the support of Kellie Carpenter who acted as our local Ambassador and was a driving force behind making the Sunshine Coast MS Swimathon a success. Kellie is just one of many examples

of people living with MS who give their all at an MS Swimathon, to not only challenge themselves physically in the pool but also go the extra mile to get sponsors for their team.

Despite living with MS for over 25 years, Kellie hasn’t let that stop her wanting to make a difference in her community. “MS does change a lot of things, but looking back it gave me something that I have been able to pass on to my children and that’s perseverance and determination to keep moving forward no matter how small the task or success.”

If you’ve never attended an MS Swimathon, we would love you to come along and see what it's all about! Visit MSswimathon.com.au to find out when a Swim will be in your region.

One fundraiser that caught our eye recently was a group of mates who decided to cycle from Brisbane to Sydney. Good friends Luke, Will and Tim wanted to do something meaningful to make a difference for Luke’s Dad, Col, who is living with MS. Riding over 100km each day for 9 days, much of the way in the scorching heat and with strong head-winds, these boys put it all on the line in the hope to raise valuable funds to help find a cure for MS. There were many obstacles to overcome including being covered in road grime and diesel at the end of each day, taking a 30km wrong turn on the way to Coffs Harbour and battling gale force winds while trying to put up their tent in Crescent Head. They had a great experience and were hugely encouraged by locals donating at each rest stop.

All the effort was worth it with over $6,000 being raised as well as many opportunities to raise awareness of MS while they were on their

travels.

Well done If you have an idea boys for or want some support all your in getting your own Kiss efforts!

Goodbye to MS event off the ground, you can contact Clancy Feuerriegel on 07 3840 0887 or Clancy. feuerriegel@msqld. org.au

Registrations are now open for this year’s MS Brissie to the Bay bike ride, with over 4,000 people already registered and ready to slip into their lycra in support of the 26th annual event.

One of those riders is Charlie Bennett, a long-time supporter of MS Queensland, with his first involvement in the MS Brissie to the Bay bike ride as part of the MS Cheer Club.

Charlie’s wife Jenny is living with MS and they decided to join the MS Cheer Club to show their appreciation for the amazing fundraising the riders do. For a few years, they both loved sitting at the finish line and cheering across every single rider as they finished their ride.

Last year, Charlie decided to step things up a notch, and registered to ride the 25km. While Charlie was doing his training at the park, Jenny would join him and feed the ducks. Charlie’s training was going so well, that he soon increased his distance and committed to doing the 50km. In his first MS Brissie to the Bay, Charlie managed to raise an amazing $4,370, and said it was fabulous to have the support of the MS Cheer Club as he rode across the finish line.

Charlie is already registered for this year’s ride and has increased his distance again, signing up for the 100km ride. He is not only an inspiration to us in the office, but also to the many other people who will be riding alongside him on Sunday 19th June starting and finishing at Musgrave Park, South Brisbane.

If you would like to join Charlie in this year’s ride, you can sign-up at BrissietotheBay.com.au. There are four exciting distances to choose from – the family friendly 10km around the Brisbane riverside, the scenic 25km ride to Balmoral, the classic 50km course to Wynnum, or the challenging 100km course out to Wynnum, Wellington Point and Cleveland.

Help us raise $1.8 million to support people living with MS – sign up before Monday 4th April to get Super Keen discounted entry price. Visit BrissietotheBay.com.au NOW!

MS LIFE – autumn 2016

Queenslanders are continuing to embrace the Kiss Goodbye to MS campaign with dozens of amazing fundraisers pushing themselves to the limits or cooking up a storm over the last few months.

SUPPORTING THE MS CAUSE

L AND QUEENS G KICKIN GOALS

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SUPPORTING THE MS CAUSE

D L R O W DAY MS stop 't n s e ms do

me!

World MS Day 2016 is just around the corner on Wednesday 25 May. As part of this year’s awareness of MS campaign, our global community is being asked to share their story of how ‘MS doesn’t stop me…’

For World MS Day 2016 we’re celebrating all the ways that people affected by MS maintain independence and get on with their lives. This might be thanks to support from family and friends, adaptations and flexibility in the home and workplace, support from MS organisations, effective treatment and lifestyle choices, a steady income, or even just a shift in your attitude.

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

By sharing examples of independence from lots of different countries, we want to inspire people to challenge perceptions of what people living with MS can do.

How to get involved We’re asking you to tell us your story by completing the phrase “MS doesn’t stop me...”

Share your photos and stories across social media and don’t forget to use the hashtags #strongerthanMS #MSqld and tag us @MSqld Together we’ll generate thousands of messages that celebrate the huge range of things that people with MS can do, raise awareness and inspire action around the world. Together we are #strongerthanMS.

MS Queensland

wants to share your story!

Thank you to everyone who has so generously shared their powerful, delightful and amazing stories of how they live positively with MS and the support they receive from their MS Heroes, over the past five years.

To continue to share in more inspirational stories we have united these valuable programs, under the World MS Day, MS Doesn’t Stop Me campaign.

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Personal stories provide invaluable helping tools to people in our community, particularly newly diagnosed. We’d love to hear and share your story of how MS Doesn’t Stop Me! You might like to: • p rovide inspiration through your unique story of living positively with MS; or • s hare how valuable your support network has been to helping you continue living your best life; or • t ell us what independence means for you and how MS doesn’t stop you.

To kick off this year-round campaign, we are seeking your story by Friday 22 April 2016 in support of World MS Day. All stories will continue to be shared with Mayor Pisasale, MS Ambassador; Jenni Saunders, Chairperson of PwMS; and Lincoln Hopper, CEO, MS Queensland, and shared throughout the year with the MS community to provide inspiration for others.

If you have any queries or need a hand to share your story, please call Natalie Walsh on 07 3840 0823 or email your story to natalie.walsh@msqld.org.au

questions with tim

MS Nurses The Role and Support of an MS Nurse

This edition, I wanted to answer a question that we get asked a lot, so what is an MS Nurse and what do you do?

The MS specialist Nurse can provide continuity of support through the spectrum of a person’s life with MS; from early presentation, when diagnosis is established, to the management of a different lifestyle when MS symptoms start imposing limitations. For many of our clients, contact with MS Queensland initially revolves around support with starting, or decisions around immunomodulatory therapies. For others it will be seeking answers to more ‘clinical’ or symptom orientated questions through our InfoLine or Regional Service Coordinators (RSC).

We want to do more!

Between Bernie, Wendy and myself we have more than 55 years’ experience in MS and Neurological Nursing that we want to share in supporting you.

By the time you read this, our MS Nurses will have started offering Nurse Assessment Clinics on site

at our Dutton Park office. The purpose of these Clinics will be more than just an information discussion; we want to be able to work with you to do assessments around your symptoms and issues affecting your quality of life. We will work with you, using screening and assessment tools that you can take away with you to better facilitate support with your GP, Neurologist or other health care partners. In some instances we will initiate referrals to our colleagues at MS Queensland for their expertise, or they may refer you to our Nurses.

The Clinics will be by appointment, but you will not need a formal referral. You will need to be a Registered Client of MS Queensland or our Nursing Program to access this service. At least initially, these Clinics will only be accessible to people close to our Dutton Park office, but we will also be working on the capacity to utilise TeleHealth for our regional clients too, and eventually to take this ‘on the road’ with our RSCs.

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

MS LIFE – autumn 2016

The MS specialist Nurse’s role comprises a large number of different attributes, with the most frequently identified being provision of specialist advice and patient education, psychosocial support, co-ordination of care and onward referral.

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ELS ANNIE AND HER ANG

PwMS Support Group update After a long break away from painting, I started with an art group and recently began working on large canvases. The demand is mainly for size, colour and movement. I now realise how important it is that we all do the things in life, that bring out the colour and joy we all need.

Even if it is only a small part of the day, it can be the most rewarding for wellbeing.

MS Doesn’t Stop Me… You will read in this edition of MS Life about the MSIF (MS International Federation) activity leading up to World MS Day. During the month of May it would be great to see photos of Support Group ‘get-togethers’ from around the state, posted on their facebook pages. This campaign is about supporting our MS friends and sharing the fact that we can live life with MS and maintain independence.

Be sure to send your personal life story through to Natalie in support of the World MS Day activity, and together we can help create awareness of how multiple sclerosis affects you, your family and friends every day. You don’t have to be a gold medal winner to share how you live life with MS and still champion through days, which so many people take for granted.

We would love to hear from you!

Find the colour in ‘your’ day.

Blessings, Jenni

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Annie is such an awesome inspiration..

We just love her

Living Positively with MS

I would like to share a story about my sister Annie who lives positively with MS each day.

Five years ago my sister Annie began her journey with MS after a year of tests. What started with a visit to the doctor with a numb toe and balance tests by her local GP, she was referred to a Neurologist that started a heap of tests, one of which was MRI scans. Annie had to overcome fears of confined spaces to get these tests done and she was referred for a lumber puncture to confirm without doubt whether it was MS. Annie was then put on a needle once a day. Thanks to MS Queensland, who sent out an MS specialist Nurse, who was fantastic; to assist her with her new diagnosis, injections and answer the millions of questions we all had to ask.

Annie has had some ups and dealt with pretty major relapses, and MS Queensland has helped us along the way. They all assured us we were doing the right thing.

Slowly Annie recovered.

In 2013 she was so much stronger and said to me "Sis I want to do the MS Moonlight walk, will you do it with me and raise money?". Of course I jumped at the chance to support her and also to help MS Queensland to keep vital services running.

AND SO ANNIE'S ANGELS WAS BORN. Since 2013, we have grown from 25 walkers and raising $4,500 to over $11,360 raised last year. Annie’s Angels were MS Queensland’s 9th highest fundraisers in 2015, all in red Tutu's and shirts with lips, and printing all done by Annie. Our beautiful niece Cassandra has also done a 10km walk in Longreach raising $1350 and an outstanding 40 people walked with her.

Annie has also created Little Angel bears (Annie sews them a little tutu each) and other little items; Annie's Angels engraved pens and angel car stickers.

Annie is such an awesome inspiration to us all, with her positive outlook and never give up attitude. We just love her, she’s just a special, special person.

(Submitted by Annie's sister Jeannie).

Advocacy Natalie

WITH

we help

influence

change

With the Federal election approaching this year, MS Australia continues to advocate issues of importance for people with MS to members of Federal Government, particularly through information that the MS Community has shared to improve the lives of people affected

by MS, their families and carers.

Particular issues that have been highlighted to focus on, on behalf of people living with MS include: • F ull commitment to funding and roll out of the NDIS, including ensuring a seamless transition process occurs without loss of services in the disability, health, community care and aged care sectors.

• I mprovements to employment retention and workplace flexibility.

• I ntroduction of a single National Medical Energy Concession – utilising a percentage of the energy bill.

• Y oung people in residential care – prevention of new admissions and creation of coordinated service pathways across Government portfolios.

• F ull commitment to funding and roll out of the Medical Research Future Fund.

• A ccess to affordable and safe medicines and pathology imaging services.

• E xpanding opportunities for autologous haematopoietic stem cell treatment (AHSCT) in Australia.

• B etter integration between aged care, health care and disability care systems.

• Improvements to early intervention processes.

• I mplementation of Australia’s Liveable Housing Design Guidelines.

MS Australia are hosting a Federal Election Blog monthly to discuss these focus areas in greater detail, please visit the news & blogs section of msaustralia.org.au to keep updated.

MS Australia would love to hear your feedback on the issues they are championing, to let our Federal Politicians know what you want from our Government. Please send any information you would like to share to info@msaustralia.org.au and don’t forget to share with MS Queensland too natalie.walsh@msqld.org.au

Personal

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17

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

We regularly receive letters from carers and partners of people living with MS; sharing their stories and reminding us that families and friends are also affected by the condition. We know that it’s often people’s loved ones and partners who take on the role of the carer, and that knowing how to access support, services and advice can help you to manage the many changes MS may bring.

Head to carersqld.asn.au for more resources to support you as a carer.

ARE YOU A

MEMBER?

MS LIFE – autumn 2016

18

Becoming a member of MS Queensland gives you voting privileges at the AGM, and helps support the ongoing provision of publications such as MS Life that deliver important information about MS. Membership is only $33 a year and can be done easily by simply calling 07 3840 0888 or visit msqld.org.au to complete the application form.

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16 times – you simply could I am praying about I was totallyup to about of lemons am scratch it won’t. daily: I walk from you a bag a to life hands learnt given me not to twice.

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- 4 June

Summer

QUEENSLAND

life back

Annerley....

Life at and dignity COMPLETED! back independence

Edition

LIFE QUEENSLAND

Official

OUR PATRON Ms Penelope

3 Spring

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

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

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

PREPARING FOR THE HEAT p.7 SUMMER

LIFE

Queensland – QLD

VIRAL

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

celebrations

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

2010

Debbie strives MS despite

P5

P3 MOVEMENT A GLOBAL with united world How the goal: to raise a common of MS awareness

COOLING

REBATE

introduces Governmentrebate for State electricity a new Queenslanders low-income sclerosis with multiple

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

FEATURE

RESEARCH

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P15

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

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

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

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

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

I enclose my subscription for:

Annual Ordinary Membership $33.00 (inc. GST) (1 July – 30 June) Life Membership $330.00 (inc. GST) iding ensland?

(Life Membership can only be granted following application for Ordinary Membership) in prov find a MS Que assists us research to ber with $33 a year, g edge MS a mem MY pERSONAl DETAIlS ARE AS fOllOWS: h is just leadin Are you us, whic about MS and MS ip with such as Full Name ........................................................................................................ cations Membersh and education gh publi website. sclerosis.

Address ........................................................................................................... ve throu information our multiple you recei Centre on content ation cure for ation urce ........................................................................................................................ es the inform Online Reso t the inform itted to ne ack abou This includInsight and our anyo are comm Postcode ................................................ Phone No ......................................... ive feedb MS Life. We resource to posit its Life, MS ation restrict ve very magazine, s sed ble inform we do not arly recei this come Email ...............................................................................................................

We regul ip client-focu ide this valua and as such only. But to prov Date of Birth .................................................................................................... members support. st in MS of our flagsh continuing has an intere Queensland your who we need to MS MS services support plEASE INDIcATE YOUR INTEREST IN MS QUEENSlAND circulation antial cost and ns and your at a subst publicatioplease show with MS I have MS I just want to support the ip value the then So if you nd provides your membersh you can A family member has MS MS cause Queenslag or renewing a fee of just $33 becoming I know someone with MS Other ........................................ by joinin nd today. For might consider ying about rt worr MS you ensla of or suppo avoid Que MY SUbScRIpTION, AS SHOWN bElOW, IS ENclOSED: Help strength for a year, just $330 to join us again! The itted ber for ip ever Ordinary $ ...........................

MS Queensland and comm a Life Mem membersh our active your Life $ ........................... s from ome your paying and our good nd come welc Donation $ ........................... (All donations $2 and over are tax deductible) Queensla we would work! and .

TOTAl $ ........................... to have members our vital work rtunity n to the oppo ensland at the contributio pAYMENT DETAIlS: Que l also have ber you’l e plans of MS r. mbe cial mem futur Please make cheques payable to Multiple Sclerosis Society of Queensland leaf and As a finan on the exciting (AGM) in Nove form over lf OR please charge my Visa M/Card Amex Diners Meeting your say beha lete the General ble. On ly comp Annual ber, simp as soon as possi forward to Card No __ __ __ __ / __ __ __ __ / __ __ __ __ / __ __ __ __ look nd me a mem To beco to MS Queensla with MS, wefree from MS Expiry Date__ __ / __ __ Name on card ......................................................... it s living a world return enslander ort for of all Que bership supp ct.

Return this form with your payment to MS Queensland using the enclosed your mem stating impa Reply Paid envelope. Thank you for your support. deva and its

have your say

MS12

Positive Psychology This factsheet discusses positive psychology and provides practical strategies to help increase your psychological wellbeing.

WWW.MSQlD.ORG.AU 30/03/2015

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Mindfulness Meditation for MS Mindfulness meditation may be helpful in coping with and improving the quality of life for people living with MS. This article discusses mindfulness and provides 5 simple tips on how to get started.

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MS & me – A Self-Management Guide To Living with MS This booklet contains information on selfmanagement of MS, along with some practical strategies and techniques to help you to live your life to the fullest.

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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Everyone is aware that we need to look after our general health, both mind and body, however this is even more important with a diagnosis of MS. The symptoms and uncertainty of MS can be overwhelming at times, hard to cope with and difficult to manage. At MS Queensland we have several resources and information available on self-management, which provide strategies and techniques to help you to live well with MS.

DRIVE YOUR MEMBERSHIP FURTHER JOIN ONLINE AT WWW.MSQLD.ORG.AU

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Life at and dignity COMPLETED! back independence

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

Winter

Giving

IT WHAT A YEAR MS FOR HAS BEEN WORLDWIDE

MS Life

MSLIFE.

2008

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

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

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

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

PARTIALLY OPTIONS LIFE

mssociety@msqld.org.au Email: www.msaustralia.org.au/qld

A YEAR OF EMPLOYMENT AND MS

LEIZA’Sp.3 STORY

Edition,

THIS CEO’s

brissie PEDAL

3800

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

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LIFE Queensland

2010

MSday worldMAY 2010 26

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

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VIRAL

Autumn

LIFE

QUEENSLAND

GLOBAL JOIN THE day worldMS

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

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

BRISSIE GET PHYSICAL

MS Life

QUEENSLAND

LIFE AT

QUEENSLAND life back

Queensland – QLD

celebrations

with

One man’s odds the against

with Working MS Workshops

your

of the Australian Year MS DAY the global can help How you on employment campaign and MS

WORLD

Judge

SES helps Montano floods Josie PwMS Queensland’s during and cyclones

MS AND

Nominate MS Hero

2010 26 MAY

Horse

MS Australia

Employment Power WEEK

pg. 12

pg. 8

pg. 8

– QLD

MS Australia

2011

MS Awareness

Panel

LIFE

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

AND MS EMPLOYMENT Queensland Day See how in World MS took part this year

pg. 15

MS Life

life back

MS CLINIC

National Ambassador,with MS and person

2011

MISSION her back ON A let MS hold Positively mum won’t LOUISA Living a young MS struggle How

12

Giving

tell...

Sandy MS, Us!” Have “We Have Doesn’t But It

Lisa &

11

of AGM

most to the CONVERSATIONS answers In depth asked MS questions frequently

Jenni

Winter

MS

can How you help spread the word MS about this May

9 10

Needed

MAGAZINE

MS

8

Ambassadors

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

LIFE QUEENSLAND

MS National 2nd Annual Conference for MS House Advocates Parliament Storming

MS Life

2012

QUEENSLAND’S

2 3 3 4 6 8 9 10

7

idea...

year old’s

MS Readathon

Notice

Update Our New Annerley Life at Articles 30th Birthday Feature MS Readathon Research Fatigue MS Services

6

Again

Events An 11

ISSUE...

Message CEO’s Story Catherine’s Website

& taking

5

Aart

Lynette

to you support control

Services

3

Bay

Facebook

of Posterity

Work of

2009

MSLIFE. AWARENESS MONTH THIS MAY

IN THIS 2

to the

Introducing

Edition

AUTUMN

2008

ISSUE

Desk

Brissie

CYCLIST

Spring

2009

Giving

Edition,

THIS CEO’s

brissie PEDAL

3800

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

Edition

QUEENSLAND life back

3 Spring

for

bay to the New Record CURE! FOR A

2009

LIFE

LIFE

Autumn

LIFE

LIFE

Queensland

s e c r u o MS res

Connecting with MS Queensland

For a copy of these resources or to seek further information please contact our InfoLine on 1800 177 591.

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

19 MARCH

15 APRIL

8 MAY

MS Swimathon Rockhampton

MS Swimathon Cairns

MS Swimathon Townsville

www.MSswimathon.com.au

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25 MAY

19 JUNE

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MS Brissie to the Bay

MS Moonlight Walk

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