MS Life Spring 2017 by MS Queensland

MSLIFE. SPRING 2017

MS QUEENSLANDâ&#x20AC;&#x2122;S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

ANNEMARIE'S STORY MS DOESN'T HAVE TO STOP YOU

ALBANY CREEK

APARTMENTS OFFICIALLY OPEN

PROJECT DIGNITY 120...

BUILDING EXCEPTIONAL FUTURES WHY WE NEED A HOUSING STRATEGY...

ROBBIE'S STORY

INTRODUCING OUR

NEUROSERVICES SUITE

FROM THE CEO

Creating housing for people living with MS and other progressive neurological diseases is so important to us and with our Project Dignity 120 initiative taking off, we are excited for what the future holds. We are committed to building homes that meet our customer’s expectations and the ‘Livable Housing Australia - Platinum Standard’. This means our Specialist Disability Accommodation will be fully accessible with high levels of support for residents. This edition has caused me to reflect on when we first started this housing journey with our Annerley Apartments which truly represent the goals we have for the housing we create. Driving past the Annerley Apartments, you simply wouldn’t have a clue how amazing they really are. From the outside they are pleasant, but possibly an unremarkable group of four townhouses in suburban Brisbane. What is so incredible about this place is not that it just looks “normal”, but in fact it really is – including on the inside. For many years accommodation options for people with high needs have been more hospital-like than homely. And for anyone of us who has spent time in hospital, you definitely wouldn’t want to live there!

Understanding what people with MS really need and with our mission of ‘restoring dignity’, we are creating amazing homes that are genuinely inviting, modern, bright but a practical place to call home. We’ve learnt lessons along the way about what works and what our customers want in a home…something that Robbie’s Mum Heather puts wonderfully on page 4.

MS LIFE SPRING 2017

IN THIS EDITION

Seeing the outcomes for people like Ron (page 7) who is now reunited with his family and has his independence and dignity restored, is a reflection of what can be done with some forward thinking, passionate people and hard work. On an operational note, we sadly said farewell to our Immunotherapy Nursing Service last month (more on page 19). We have also merged some of our staff under the new Customer Experience Department which is designed to understand you, our customers, your needs and ensure we are meeting your expectations (more on page 21). As a supporter of MS Queensland, I thank you for your ongoing backing in our quest to create a positive future for all Queenslanders living with MS and other progressive neurological diseases.

FEATURES

REGULARS

PERSONAL STORIES

PAGE 5 Lutwyche Apartments Officially Open!

PAGE 16 MS Moonlight Walk

PAGE 4 Why we need a Housing Strategy… Robbie’s Story

PAGE 6 Albany Creek Apartments Officially Open! PAGE 8 Project Dignity 120 PAGE 10 Stem Cell Transplant Therapy

Best wishes, Lincoln, CEO

PAGE 13 Primary Progressive MS Medication Approved in Australia PAGE 13 MS Researchers visit MS Queensland PAGE 14 Anne-Marie’s Story

EDITOR'S NOTE MS LIFE – SPRING 2017

Welcome to the Spring edition of MS Life! I'm the new editor and I'm excited to be a part of the MS Queensland family. Since starting the role in June, I have enjoyed meeting customers and learning more about MS and other progressive neurological diseases. I’ve been amazed by the level of dedication from the whole MS Queensland family, especially the daily efforts of our services team and the generous fundraising from our supporters. Most of all, I have enjoyed hearing the inspirational stories of people with MS, their families and carers.

It truly makes coming to work so worthwhile knowing we are contributing in some way to improving the lives of people living with MS. I look forward to meeting more of you along the way. Warm regards, Natascha, Editor

PAGE 18 MS Queensland wins Annual Report Award

SUPPORT PAGE 12 Introducing our NeuroServices Suite PAGE 20 MS Queensland Services Update PAGE 20 NDIS Turns One!

PAGE 16 MS Swimathons PAGE 17 Team Cure MS PAGE 17 Brissie to the Bay PAGE 17 MS Limited Edition Lotteries PAGE 19 What’s Making MS News PAGE 21 Community Engagement with Natalie PAGE 22 PwMS Support Group Update

PAGE 7 Ron’s New Home PAGE 9 Sian Shares her Story PAGE 9 Jesse Shares his Story PAGE 18 My MS Doesn’t Stop Me

CONNECTING WITH MS QUEENSLAND

PAGE 22 MS Resources

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

MS LIFE – SPRING 2017

There’s no doubting there is a theme throughout this edition with features on our housing strategies and the stories of people whose lives can be or have been changed by MS Queensland’s ambition to solve Queensland’s housing crisis. There’s also a number of references to changes occurring in MS Queensland as we prepare for the future and ensure we are able to adapt to change while putting our customers first.

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

All Robbie and his family want, is for him to have normality, familiarity and most importantly, dignity. Robbie’s mum doesn’t want Robbie spending the day apologising for something he has no control over. She wants him to have a home where there’s support staff that Robbie can call upon when in need. People whose job it is to care for Robbie so he doesn’t live with constant guilt for needing help. Robbie would love to have a home he is proud of where his family could visit for a coffee and a catch up. Robbie was on the list for the new Albany Creek Apartments (story on page 6) but unfortunately, the disability housing crisis facing Queensland is so great that there were people more in need than Robbie. There are people trapped in unsuitable facilities and whose families can no longer support them, which is the exact fear that Robbie and his family face every day.

Robbie grew up always wanting a family of his own. He was a healthy and fit young carpenter who spent much of his working life building homes for the elderly and people with disabilities. This was Robbie’s normal until he was diagnosed with MS in 2007. From then onwards, Robbie’s new normal was MRIs, blood tests, neurologist appointments, physio and preparing for his new future living with MS. Robbie is a vibrant, compassionate and enthusiastic soul. He doesn’t allow his MS to make him a victim. Instead he wants to help others in similar situations, “I’m young and I just want to help,” says Robbie. After Robbie was diagnosed, his family left their house in Brisbane as it was unsuitable for Robbie’s changing needs. His entire immediate family including his sister and her three children moved in together so they could share in the caring of Robbie.

MS LIFE – SPRING 2017

Robbie deserves to have choice like any other man in his 30s but Robbie lives with the guilt of relying on his family for everything. He can no longer go anywhere on his own as he forgets where he is. He loves coffee but he can no longer go to a coffee shop alone or even make his own coffee at home. His family do everything they possibly can to give him his independence but Robbie’s MS stops him from doing things that many people take for granted. The family’s dining room is up a few stairs which Robbie could use early in his MS diagnosis but now they are a barrier. With no other space

4 Image: Robbie and his Mum Heather

suitable or large enough, his family not having the funds to build a ramp, and NDIS not yet available in Robbie's area, he is now isolated from his family while they eat dinner and share their day together. They do their best to involve him in the conversation from the bottom of the stairs but there is nothing quite like sharing a meal with your family around the dining table. There’s many simple things Robbie deserves like having dinner with his family, the choice to shower when we wants to and have his own space without fear of what might happen if he is left alone. He deserves to experience the best life he can with dignity and choice. Equally, Robbie’s family deserve to live their life without the guilt of what they can’t provide for their son and brother. Robbie’s Mum Heather is a tower of strength. She says “If there’s one thing I have always fought for, it is Robbie’s dignity.” What Robbie really wants is a home of his own, where he can ask for help without the guilt of asking his mum or sister to support him. He wants

Robbie’s mum Heather is a huge advocate for MS Queensland’s Project Dignity 120 because of what is at the heart of the building and that’s the people. She says “people don’t just need a charity to build them a house. They need an organisation that is there for the long haul. They need the house as well as the understanding of what a person living with MS needs from a home. They need an organisation that can provide the services and support once the building is done. It’s not just about a building…it's understanding the disease and the person behind the disease that makes the house a home.” Robbie’s mum says what Robbie needs is “people who know him, not just medically but know his personality. They need to know if Robbie is acting out of the ordinary which means he may be about to have a relapse. They need to know what food he likes and what food can upset his stomach.” Families like Robbie’s are being pushed to breaking point which is why MS Queensland is dedicated to our Project Dignity 120 initiative. It’s our plan to tackle this urgent issue head on. You can read more about Project Dignity 120 on page 8.

LUTWYCHE SPECTRUM APARTMENTS Our new Spectrum Apartments at Lutwyche were officially opened on 25 July. The four apartments are Specialist Disability Accommodation registered which means NDIS participants can benefit from these fully accessible apartments. Weekly rent is $275 with preference for occupants living with MS or another progressive neurological disease. Some of the features of the apartments include: > large rooms and private courtyard allowing access in a wheelchair or with mobility limitations > ducted air conditioning and ceiling fans > lowered bench heights > hobless shower > washing machine and dryer included > secure building at the doorstep of the Lutwyche underground bus terminal > 350m from Lutwyche City Shopping Centre Our Lutwyche Apartments are another answer to the disability housing crisis. For more information on MS Queensland’s housing projects visit msqld.org.au/site/our-work/housing Image: Nigel Flett and Lincoln Hopper outside the new Lutwyche Apartments

MS LIFE – SPRING 2017

WHY WE NEED A HOUSING STATEGY... ROBBIE'S STORY

his own space with the comfort of knowing that there are professionals nearby that know him and his needs.

Ron's New Home Just recently, Ron had the pleasure of cutting the ribbon to his new home, the Albany Creek Apartments, with the Premier while his proud family watched on.

For more information on our housing strategy, please contact Karen Quaile, Director of Services on (07) 3840 0840 or karen.quaile@msqld.org.au

ALBANY CREEK APARTMENTS

OFFICIALLY OPEN The site at Leitchs Road, Albany Creek has been provided by the government, which is also providing a $1 million contribution through the Elderly Parent Carer Innovation Initiative (EPCII), which aims to find new housing solutions for people with disabilities currently living with elderly parent carers.

MS LIFE – SPRING 2017

The stunning new apartments provide age-appropriate housing for eight young people living with MS or other progressive neurological diseases with high care needs. The homes have innovative technologies where lighting, automated doors, entertainment systems, beds and blinds are all controlled with the touch of a fingertip, helping our residents to control their apartment and surrounding areas. These homes are a new two-bedroom design, providing each resident with the added flexibility of an additional guest room or study.

difficult. Many people have little choice but to move into aged-care accommodation as a last resort. In Queensland, 1340 people with a disability under the age of 65 are living in resident aged care – this is just not good enough and we’re determined to solve this. The official opening for the new Albany Creek apartments was held on 27 June with resident Ron and the Premier Annastacia Palaszczuk cutting the ribbon. Residents including Ron started moving in from 3 July and they are beyond pleased with their new homes.

“I lived at home for 11 years, which was a bit of a strain on my wife, because she had to hoist me on and off chairs and things. I went for two-week’s respite at Dutton Park. When they saw how bad I was they gave me a permanent position,” said Ron. For Ron, being at the Albany Creek Apartments gives him his independence and freedom back. With a spare bedroom and plenty of space, Ron can have his wife, children and grandchildren visit. He has the dignity of being in control of his life while knowing that help is just a button press away. “Everything’s at my fingertips, my doctor’s surgery is across the road, all the shopping centres are really close by, there’s a lot of specialists in Albany Creek – it’s renowned for specialists,”

“We have an iPad, we just flick a button and the doors will open. Flick another button and the television will come on. We can adjust the lights and curtains from the iPad,” said Ron.

This inspiring development is another step towards creating a future where every young person with high care needs has the opportunity to choose where and how they live their lives.

MS LIFE – SPRING 2017

The Albany Creek apartments, a partnership of MS Queensland, Youngcare and the Queensland Government are now open.

Within days of that special moment, Ron was moving into the apartments that he now calls home. For Ron, moving to the Albany Creek Apartments meant he returned to the live in the same suburb as his wife. Ron was diagnosed with MS in 1995 but five years ago Ron’s MS escalated to a point where he had no choice but to move into MS Queensland’s Granston Lodge at Dutton Park. This came about following a short respite at Granston Lodge where the MS Queensland staff saw how much support Ron needed.

You can read more about MS Queensland’s housing strategies in the Project Dignity 120 article on page 8.

There is a housing crisis in Queensland and finding age appropriate high care housing for people living with MS and other progressive neurological diseases is extremely

7 Image: Ron and his grandson at the Albany Creek Apartments

PROJECT DIGNITY 120... DOING NOTHING IS NOT AN OPTION Project Dignity 120

Project Dignity 120 is raising awareness and funds to build 120 high need independent living apartments across Queensland to bridge a critical gap in the availability of high need housing with quality support services.

We are beyond excited about the commencement of our next Specialist Disability Accommodation project with our apartment complex in Springfield well and truly underway. The Springfield development is just one of many projects delivering high need apartments that MS Queensland is planning across our state. This is our unique approach to fix the high need housing crisis and is different to any other not-for-profits’ attempts to date. Our Springfield development along with our future Project Dignity 120 developments meet Liveable Housing Australia – Platinum Standard - the highest standard of SDA housing that is easier to access, navigate and live in; and more cost effective to adapt when life’s circumstances change. MS LIFE – SPRING 2017

Nine out of ten people with MS live at home and want to stay there as long as possible. But people are being forced from their homes because their homes can’t adapt. Many end up in aged care well before their time. Queensland families, people you know, are being pushed to breaking point, robbed of their ability to care and to cope. We must do something to change this and that is why MS Queensland is going full steam ahead with Project Dignity 120 to tackle this issue, head on.

More about Project Dignity 120 at projectdignity120. com.au or like our Facebook page @ProjectDignity120

We believe that everyone deserves the right to live with dignity, with choice and control over their lives. We are not just building buildings; our care model and service focus make us different. We are changing what the future looks like for people with progressive neurological diseases and their families by providing homes with appropriate care and support, when it’s needed, so people can live safely and independently for longer. Each housing complex will feature our very latest, fully accessible “Livewell with MS” design offering privacy and safety for each individual, with opportunities by choice to interact with other residents in an onsite gym, dining room or common areas. Project Dignity 120 is our largest undertaking ever and a bold attempt to fix the high need housing crisis in Queensland, once and for all. We are just at the beginning of this remarkable journey to restore dignity, independence, privacy and choice. Robbie who is featured on page 4 is an example of the people living with MS and other progressive neurological diseases that can benefit from this focus on solving the disability housing crisis.

He says, “I remember him telling me that the most he hoped for was that the treatment halted the progression of disability and anything else was a bonus. Of course I was apprehensive as although the mortality rate was low at 2-5% (at the time), it was there and something I had to consider.” Jesse was the first person to undergo this treatment at a clinic in Adelaide. He says, “The treatment itself was very invasive and the whole experience was very isolating. I was under no illusion that it would work miracles for me but at the time the benefits outweighed the risks. However I was given the appropriate care before and after the treatment to reduce the risks and increase the chances of it working for me.” Four years on and Jesse hasn’t experienced any major setbacks and his latest MRI showed no real disability progression. He says, “There’s no doubt it was a worthwhile treatment for me to have as I was out of all other options but it hasn’t been the miraculous experience that the media seem insistent to report on. My disability hasn’t been reversed; I still use a wheelchair every day.” He adds, “I don’t like to read much into media stories anyway and I’m pleased I don’t because I would only have been disappointed with the outcome. I’m proof this treatment is not the miracle cure they’re reporting it is. They are always going to sensationalise and I think it’s irresponsible playing on the vulnerability of people living with this unpredictable condition. All I can really say is talk to your neurologist about it to see if it’s an appropriate option for you. I’m proof that it isn’t a miracle cure treatment.” An important aspect of Jesse’s treatment journey in Australia was his pre-treatment assessment and the provision of appropriate care before and after treatment. This level of assessment and care is not always available at clinics overseas.

Four short years ago I was diagnosed with MS. I had tried three disease modifying drugs with no success and my MS continued to aggressively progress. Mainly through media reports, I became aware of the great successes HSCT was having for people diagnosed with MS, in Moscow. This was an option, but not a country I had ever dreamt of visiting! I went to Moscow in Summer – the weather was very similar to Queensland in Spring; it was lovely and green; flowers everywhere. Definitely not what I expected! The 30 days of treatment and care received as a patient in the National Pirogov Medical Centre was exceptional! I took each day as it came and as a result, the time during the treatment flew! The friendships formed with other patients and carers from Australia have been priceless with positive updates being shared often since the treatment. The recovery can be like a rollercoaster but for me, the long term benefits outweighed the probability of a continued decline. My MS has been halted and that is the main hopeful outcome when undertaking the treatment. My fatigue/fogginess vanished and speech is back to normal. I had fairly significant right side weakness before I went. Although this remains, I am working hard (with my extra energy!) to re-strengthen the muscles with slow, steady success. The treatment is not cheap and associated travel costs need to be considered. I am so grateful I had the opportunity to stop my MS in its tracks!

TURN OVER THE PAGE TO READ MORE ABOUT the ahsct treatment

CAN BLOOD STEM CELLS REBOOT THE IMMUNE SYSTEM?

Jesse Frick from Adelaide was diagnosed with relapsing remitting MS in 2005 when he was just 18 years old and by the time he was 22 he used a wheelchair. After exhausting all of his treatment options, his neurologist suggested that AHSCT could be of benefit.

SIAN shares her story

MS LIFE – SPRING 2017

JESSE SHARES HIS STORY

There is a great deal of scientific and community interest in the role that stem cells might play in treating MS. Stem cell therapy is a treatment that uses or targets stem cells; usually to help replace or repair damaged cells or tissue. However, the treatment currently receiving significant interest in the MS community is something called Autologous Haematopoietic Stem Cell Transplantation (AHSCT).

The idea of this treatment for MS, is that it essentially resets, or reboots the immune system so that it is less likely to attack the brain and spinal cord. Like the available disease modifying therapies currently registered for use, this treatment is not a cure for MS, but some scientific reports published over the last few years reveal encouraging clinical findings suggesting that the treatment can prevent or reduce relapses for quite some years following the procedure. The research to date suggests that people who have very active relapsing forms of MS and are younger (40 or younger) can do well after the treatment, although, people with progressive forms of MS are less likely to get a benefit from the treatment. MS LIFE – SPRING 2017

The treatment does however, come with significant risks and given the number and range of approved therapies on the market it is generally only recommended by doctors for people who have not responded well to other types of MS treatments. The risks are mainly due to the extreme suppression of the immune system in the few weeks following chemotherapy that can leave people very vulnerable to life-threatening infections that need intensive care

treatment. Longer term risks associated with the chemotherapy are also known to occur, including effects on fertility and longer-term cancer risks. The global rate of mortality (people dying as a result of the procedure) has reduced in recent years from about 5% to approximately 1.3%. MS Research Australia has provided a comprehensive review of what is involved in AHSCT on their website with information about what the research has shown to date (msra.org.au/AHSCT).

AVAILABILITY OF THE TREATMENT IN AUSTRALIA MS Research Australia, MS Australia and MS Queensland deeply understand and fully acknowledge that people with MS will wish to explore all potential treatment avenues. AHSCT does have a role to play in the range of treatments available to treat MS, however, it is very unlikely to be right for everyone. Its potential risks and benefits must be carefully considered in relation to each individual’s personal circumstances in consultation with their health care providers. Currently in Australia it is provided through two observational clinical trials and by a limited number of centres on a case by case basis. In all cases, the hospitals require a referral from a neurologist and in the majority of cases, hospitals will only accept patients who have failed to respond to other available MS therapies. More information about these clinical studies can be found on MS Research Australia’s website here msra.org.au/ AHSCT and on their MS Trials website mstrials.org.au.

of the treatment and understand for which patient population the treatment is most appropriate. This type of evidence usually comes from large scale clinical trials and long-term studies. The international evidence for the use of AHSCT to treat MS has been growing gradually over the last several years. However, the results of gold-standard, randomised controlled trials have only recently begun to emerge. This together with large observational studies conducted in Europe and elsewhere, is leading to a much greater understanding of the treatment. To contribute to this global accumulation of knowledge MS Research Australia, together with a steering committee of haematologists and neurologists, established the Australian MS AHSCT Registry in 2011, to collect clinical data on Australian patients who have undergone the procedure, either in Australia or overseas. The work to collect and analyse long-term follow-up data is ongoing. In the interim, MS Research Australia and the steering committee developed a position statement, with reference to the current data published in the international peer-reviewed scientific literature, on the use of AHSCT for MS with guidance on its possible place within the range of treatment options for MS. Visit msra.org.au/AHSCT for the AHSCT Position Statement. MS Research Australia is also funding a research study to examine the effect of AHSCT on the immune system.

This study will help determine how the treatment works and who is most likely to benefit. This will help better identify individuals for whom the potential benefits of the procedure far outweigh the significant risks. Globally, amongst the MS research community, there is also recognition that a large gold-standard clinical trial is still needed to help understand how the treatment measures up in terms of the duration of its effect and its safety in comparison to some of the other highly-effective MS therapies currently available. MS Research Australia is continuing to monitor the outcomes of clinical trials overseas, and is actively consulting on a global scale for opportunities to work with other countries to further develop the evidence. They have also worked to provide as much evidence-based information, including videos and easy-to follow infographics, so that people with MS can make informed choices about their treatments in collaboration with their neurologists. MS Australia and MS Research Australia have also been working together with haematologist and neurologist groups and the state and federal governments to raise awareness on the role that AHSCT may play in the treatment of MS and discuss appropriate access to the treatment in Australia.

WHAT RESEARCH AND ADVOCACY IS HAPPENING FOR AHSCT IN AUSTRALIA? For hospitals and clinicians to be able to provide a particular therapy for patients they must have a strong body of evidence available to understand and weigh-up all of the potential benefits and risks

MS LIFE – SPRING 2017

This treatment is first and foremost an immune-suppressing chemotherapy treatment that almost completely removes a person’s immune system – it is a type of chemotherapy normally used for people with particular types of blood cancers. The use of stem cells in this case, is to help restore the blood and immune system after the chemotherapy. There is no evidence that they contribute directly to repair of the nervous system.

CAN BLOOD STEM CELLS REBOOT THE IMMUNE SYSTEM?

CAN BLOOD STEM CELLS REBOOT THE IMM UNE SYSTEM?

11 This article is a collaboration between MS Queensland, MS Research Australia and MS Australia. We would also like to thank Jesse and Sian for sharing their stories.

NEUROSERVICES

SUITE

Introducing our

At MS Queensland we are committed to helping people living with MS and other progressive neurological diseases get the best out of life. As an NDIS registered provider and with nearly 60 years’ experience, you can be confident that you’re in touch with the latest in care and services. We exist to help you. You can receive information, education, treatment, care and support with our new NeuroServices suite.

MEDICATION FOR TREATMENT OF PRIMARY PROGRESSIVE MS APPROVED IN AUSTRALIA Ocrevus, a medication which can be used for the treatment of primary progressive MS (PPMS) as well as relapsing remittng MS (RRMS), has been approved for use in Australia. Ocrevus (ocrelizumab) was approved by the Australian Therapeutic Goods Administration (TGA) in July for the treatment of MS. The TGA approval is significant as this is the first ever medication

MS RESEARCHERS VISIT MS QUEENSLAND

approved for the treatment of primary progressive Information and education sessions delivered by neurological specialists are a great way to learn about different aspects of MS and other PNDs. They also provide an opportunity to meet others in a similar situation to you.

Your physical capability to engage in everyday life could be improved with personalised treatment by our neurological physiotherapists. They are trained in preventative techniques and physical conditioning training needed for the long term management of your condition.

MS (PPMS). Ocrevus showed a modest slowing of progression in clinical trials and it is the first time a treatment has shown efficacy for PPMS. Following its approval for use in Australia it has more recently been recommended for inclusion under the Pharmaceutical Benefits Scheme (PBS), which will make the drug more affordable. The Pharmaceutical Benefits Advisory Committee who advises the government on which

Your one-stop-shop for evidence-based information and support for you, your family and carers. NeuroAssist provides a comprehensive source of advice about your condition, and direction to appropriate services.

medications should be made available on the PBS recommended the medication for inclusion under

Professor Guillemin and Dr. Lim made the world first discovery of a simple blood test that can rapidly and accurately determine what type of MS a patient has. The discovery enables faster personalised treatment, which has the potential to slow the disease and limit damage to the brain and spinal cord.

the PBS for patients with RRMS. A submission for its inclusion under the PBS for patients with PPMS will be considered in November this year. In the Ocrevus studies, it was found that it reduced

MS LIFE – SPRING 2017

Maximise your participation in the activities you like to do, need to do or must do for as long as possible, where you may otherwise have been limited by your condition. Our specialised occupational therapists offer personalised assessment and advice to assist you.

Professor Gilles Guillemin and Dr. Edwin Lim from Macquarie University visited MS Queensland in August. The MS researchers were finalists for the Australian Museum Eureka Prizes for Innovation in Medical Research for their study which was featured in the Autumn Edition of MS Life.

relapse rates, slowed the progression of disability, reduced the number of new lesions, slowed the expansion of current lesions, and reduced overall brain volume loss. Ocrevus is administered through NeuroCoordinate works one-on-one with you, your family and carers to provide the support you need, when you need it. Highly trained service coordinators help you access services and support to help improve your quality of life.

Those living in our specialised disability accommodation receive quality personal care and support, community linking and capacity building tailored to your life goals. You are encouraged and supported to live independently and to be involved in the running of your home.

two intravenous infusions once every six months. You can monitor the outcomes of PBS decisions at the following pbs.gov.au/info/industry/listing/

elements/pbac-meetings/pbac-outcomes Image: Lincoln Hopper, CEO MS Queensland with Professor Guillemin and Dr. Lim

ANNEMARIE'S STORY MS DOESN'T HAVE TO STOP YOU

When she first started experiencing strange episodes following her car accident, Anne-Marie who had just started her career as a registered nurse, knew there was a problem and booked an appointment with a neurologist. She was told she could either have MS or meningitis, and underwent an MRI. Her neurologist confirmed her MS diagnosis over the phone and the then 21 year old broke down. Once Anne-Marie had collected herself she called her local MS organisation, MS NSW. They connected her with a neurologist who Anne-Marie continued to see for more than 20 years, building a strong foundation of support and friendship.

MS LIFE – SPRING 2017

Anne-Marie’s symptoms were mild and her progression slow, enabling her to continue her nursing career. She worked as a theatre nurse for 13 years but started to find it difficult standing for long periods during operations so moved to the wards where she cared for children. Nursing started to become more difficult so she gave it up and utilised her AustSwim qualifications to teach kids to swim. She loved working with kids but after four years teaching part-time, balance issues combined with small children in a pool started to worry Anne-Marie and she decided to stop working.

As Anne-Marie’s MS slowly progressed, her older sister who also lived in Sydney saw the need for Anne-Marie to be closer to family. She arranged for Anne-Marie to visit her brother in Brisbane and while staying with him the three siblings agreed a permanent move to Queensland would be a good idea. Anne-Marie’s Brother Phil fitted out a two bedroom granny flat on his Wooloowin property with a suitably accessible bathroom and even installed a stair lift so Anne-Marie could safely navigate the few stairs that lead to her bedroom and bathroom. Now Anne-Marie has complete independence in her own little flat, while still having the support of family close by when required ¬– and she loves it! “Moving to Brisbane has been great, I really love it here!” says Anne-Marie. When she arrived in Brisbane her sister-in-law booked her in to see a MS Queensland Regional Service Coordinator (RSC) to help coordinate her care needs. Now she regularly goes to physio and aqua aerobics and has formed friendships with other people with MS, going out for coffee after physio. She has even accessed an electric scooter that had been donated to MS Queensland which allows her to drive to the local shops. Anne-Marie is incredibly positive and encourages other people with MS to “try not to let it rule your life, MS doesn’t have to stop you” and she truly lives by this. She recently celebrated her 40th birthday with a cruise to the Whitsundays, not letting her MS stop her from maximising life.

MS LIFE – SPRING 2017

Anne-Marie Zammit is a bubbly, vivacious woman who was diagnosed with MS following a serious car accident – she was just 21 years old. Anne-Marie has now lived with MS for 26 years.

S N O H T A M I SW

TOGETHER WE WILL BEAT MS Claire was just 27 years of age when she was diagnosed with MS in 2015. However, it all began in 2013 when Claire started experiencing symptoms such as tingling, double vision, headaches and fatigue.

The 2017/18 MS Swimathon season is here with 10 great events in 10 amazing locations across Queensland. Our Swimathons are growing bigger and better every year! The best part? It doesn’t even matter how well you can swim! Swimathons are an excellent excuse for friends, families and work colleagues to create a team and make a splash to help people in your community living with MS! The day is a perfect day out for all ages, with live entertainment, prizes for best-dressed, novelty races and heaps more.

Find your closest event today!

After Claire was diagnosed with MS, she was in shock and didn't know what this meant for her or what to do next.

MOSAIC PROPERTY GROUP Sunshine Coast Sunday 15 Oct 2017

"I am still learning about what MS is, and how it will affect me. But I try to stay positive about the future, as I know I can't control this disease."

You can help us by spreading the word and letting your family and friends all around Queensland know about these fantastic events! For more information go to: MSSwimathon.com.au

Jindalee

Sunday 29 Oct 2017

Toowoomba

Sunday 11 Nov 2017

Griffith

Sunday 11 Feb 2018

Gold Coast

Sunday 25 Feb 2018

Rockhampton

Saturday 17 Mar 2018

Mackay

Sunday 25 Mar 2018

Cairns

Friday 20 Apr 2018

Townsville

Sunday 29 Apr 2018

SUPPORTING THE MS CAUSE

Claire is fortunate that MS has not prevented her from doing too much at this stage. To help raise funds and awareness, she ran the 10km at the 2017 City2South. "I feel very lucky that I am still physically able to do these types of events. I want to support the MS Community and be part of the team." Claire was part of Team Cure MS for her City2South run, and not only did they raise over $14,000 to help fund research projects, Team Cure MS were the top fundraisers overall for City2South. "Throughout my journey living with MS, I hope to meet other people living with this disease and learn more along the way."

If you would like to get involved with Team Cure MS, you can contact Clancy on (07) 3840 0887 or TeamCureMS@msqld. org.au or register at TeamCureMS.org.au

MS LIMITED EDITION LOTTERIES

The MS Limited Edition lottery continues to offer a range of luxury cars, fabulous holidays and other great prizes and our customers obviously agree as every draw to date in 2017 has been a sell-out!

MS LIFE – SPRING 2017

Each walker receives their own lantern before they begin their walk, which will take in the best of Brisbane, including the illuminated Kangaroo Point Cliffs, Story Bridge and lush Botanic Gardens before crossing the Goodwill Bridge to continue the fun with live music at South Bank. Walkers come dressed in an array of costumes and the start line at the Cultural Forecourt at South Bank Parklands is truly a sight to behold. There are tutus, tiaras, special team outfits, super heroes, fluoro, a sea of colours and more!

With the help of over 4,500 walkers, we hope to raise $600,000 to fund support services for more than 3,700 Queenslanders living with MS, and fund research projects to find a cure. Get involved today! Sign up now at MoonlightWalk.com.au, or for more information phone the MS Queensland Events Team on (07) 3840 0828.

Here’s a picture of one of our happy winners collecting his new car. He also walked away with $50,000 cash! We’ve been living up to the ‘limited edition’ name, recently offering a very limited edition MercedesAMG C63 S “Green Machine”, of which only 25 were manufactured worldwide. Why not pick up a ticket today at mslimitededition.com.au

MS LIFE – SPRING 2017

You’re invited to join the MS community on Friday 20 October for the 19th MS Moonlight Walk! This leisurely 5km or 10km walk is a fun way to share a Friday night with friends, loved ones, work colleagues, and is suitable for all ages and abilities.

S ' K MARRY STO TOP ME S 'T N S MS DOE

Issues with fatigue, balance, and my short-term working memory meant I could no longer work at the highest levels as a senior Business Analyst. I did not renew my contracts and have closed my business.

practice is helping slow the progressive deterioration in my co-ordination and the process produces happiness, if not streams of beautiful baroque music. My timetable also allows me time to do some volunteer shifts with the wonderful OrangeSky movement to bring social connection and dignity to the homeless. Founded by two remarkable young men, I'm convinced that OrangeSky will not just be a vehicle for me to do something positive within my health limitations, but is good for me as well. It feels good to contribute and learning of other's challenges and perspectives is a useful and positive process for me as well.

As a transition to my reluctant, forced retirement, we took an extended road trip across the United States and we immensely enjoyed the sights and history and the warmth and good-heartedness of the American people. Back home now, we made the decision to place on the market our suburban 2-storey family home of over 20 years. It is the only home our children have ever known and we have deep roots with friends and schools, neighbours and church, community groups and local characters.

I've done a core strength and balance course over a couple of months with the first-rate MS Queensland physiotherapists. I try to incorporate their many 'phyzzie' lessons into my day - even if it is something as simple as trying to strengthen calf muscles while cleaning my teeth by doing heel lifts, rising on my toes: count, relax, repeat.

We moved into an apartment recently, as the gardening and the stairs were becoming too much for me. We are making new friends now and getting to know our way around, discovering the local pool and walking paths.

So, my life is very different to the interest and pressure (& professional income!) of my life before MS, but with the support of my beautiful wife and family, and of MS Queensland, I feel as if I am still leading a useful, constructive life of integrity and value. I am deeply grateful for the kindness and support I receive and, despite some fears for the unknown challenges ahead, if I had to summarise in a single word my attitude and feelings about the future, it would be 'positive!'.

Deciding to try to keep my mind active, I've enrolled part-time in an Arts degree at UQ. I am daunted and delighted at the amount of clear thinking and reading I am being challenged to do. I've found a wise and skilled cello teacher who is helping me with another lifetime ambition. The

WINS ANNUAL REPORT AWARD

MS QUEENSLAND MS LIFE – SPRING 2017

MS Queensland has been named as a Silver Award Winner at the Australasian Reporting Awards which 2,997 $1B celebrate excellence in the preparation of annual reports. The awards,953which have been running for over 60 years, 136 696 recognise an organisation’s high standards of financial reporting and communicating with its stakeholders. INFOLINE

2015-16 Annual Report

DID YOU KNOW THAT...

$8,676,000

McKinnon House was weeks of the year

12,000

$616K $228K $782K $147K $1.5M

Brissie to the Bay raised an incredible

$1,385,516 MS PHYSIO & EXERCISE

at was raised by 73 people events community fundraising was raised by Art Unions assist people with MS

2,481 MS Queensland registered customers across Queensland

3,567 work hours of volunteering was performed by services volunteers

of in-kind support was provided (collectively) by volunteers

counselling sessions were provided to customers and their families

increase on customer service spending

CARMEL MACMILLAN MEMBER

RACHEL MATTHEWS MEMBER

Board Member since

Australians live with

Board Services Philanthropic Relations

Board Services

Board Member 2009–2015 convenor of the MS Ambassador and Group. Gold Coast PwMS Support Manager Retired Business Development industrial in the automotive and MS. industries. Person with

Women are three times

Board Member since

Queenslander’s live

% 75% 25 are female

are male

OUR GOVERNANCE

2011

and Company Chief Financial Officer Group, a Secretary of the Pradella and developer of large private builder and industrial residential, commercial East Queensland. properties in South Accountants Member of Chartered Australia and New Zealand.

Assets

Risk & Audit

83 2015–16 Annual Report

Image: XX

19 651

with MS

MS STRATEGIC PLAN

NDIS information sessions were held in 16 different regions across Queensland

people attended education on and information sessions MS symptoms, symptom drug management, current reseach therapies and latest

3,539

Building & Property

with MS than men

73 IN EVERY 100,000

Board Board Services

more likely to be diagnosed

In Queensland

INFORMATION & EDUCATION

TRACEY PARKER MEMBER

3x WOMEN:MEN

356

hours were contributed MS by Board members to Queensland’s strategic direction and guidance

JOHN O’DEMPSEY MEMBER

2007

digital version

with

23K

down from 10 in 2012-13, eight in 2013-14 and three in 2014–15

2013 LSG of Qld Co-convenor of Brisbane Marketing medical Non-executive Director, Disability Network. Former specialist and and and Corporate strategy secretary, jillaroo, journalist Consulting. teacher. LongPrincipal of CM Strategy instrumental music Poetry and disability Board Director of Queensland time community, arts Pty Ltd and Roma and Festival, Piovesan Nominees in Mt Isa, Townsville, Foundation Sub- activist MS. Lagberry Pty Ltd. Mater Brisbane. Person with Graduate Committee board member. Institute of member of the Australian Company Directors.

Board Member since

to Brisbane’s MS Clinic

or more people live MS worldwide

HOUSING PROJECTS

worth of housing projects are in the planning stages

the print people subscribe to 335 version of MS Life and the have subscribed to

2.3M

staff the number of reported 62 incidents dropped from 2015–16) (in 2014–15) to 26 (in

71%

to MS Research Australia

MS PREVALENCE

$8.1M

hard We provided 9,624 copy Information Kits

$548,979 29

MS WORKFORCE

2,608

WE REDUCED LOST TIME INJURIES (LTI’S) TO TWO?

GOVERNMENT SUBSIDIES = 60% OF OUR FUNDING FOR SERVICES?

CUSTOMER SERVICES

MS COUNSELLING

DID YOU KNOW THAT...

$130,350 REPORTED STAFF INCIDENTS

DID YOU KNOW THAT...

down from 66% in 2014–15

REGISTERED CUSTOMERS

THERAPY

MS SERVICES VOLUNTEERS

raised through donations, appeals and individual giving

through was kindly donated families wills by 19 generous

531

group physio and exercise delivered therapy sessions were

GIVING

$630K

was raised by 950 swimmers at MS Swimathons

exercise individual physio and delivered therapy sessions were

of hours volunteering was provided by event volunteers

providing respite to 33 customers and their families

walkers was raised by 4,500 walk at the MS Moonlight

1,138

1,152

occupied for

donors & lotteries raised through our events, in 11 participants took part events different fundraising

WE WELCOMED 248 NEW CUSTOMERS THIS YEAR?

MS LIFE

MS RESEARCH CONTRIBUTIONS

VOLUNTEERS RESPITE MS FUNDRAISING

with people were provided immunotherapy education and support

DID YOU KNOW THAT...

downloaded 2,300 resources were directly from our website

cost is the estimated annual and the of MS to individuals Australian community

InfoLine calls We answered 1,470 emails and responded to 343

MS ACCOMMODATION

Granston Lodge provided 7,243 occupied bed days of long-term accommodation and respite

MS IS MOST COMMONLY DIAGNOSED BETWEEN THE AGES OF 20 AND 40?

Nine people received 24-hour care at Annerley to Apartments equating days 2,906 occupied bed

MS COMMUNICATIONS

11.24%

increase in Twitter presence

8.7%

increase in Facebook presence

64,931

unique visitors to our website

MS NURSING SUPPORT

– action plans were set 86 were fully achieved, 4 partially achieved, 45 carried forward and one pending

with people were provided immunotherapy nursing Royal advice through the Brisbane and Women’s Alexandra (RBWH) and Princess (PA) Hospital MS Clinics

MS NEWS? Our Spring edition sees a change of title for my column, and it is with sadness that I share the news that we have said farewell to two of our MS Nurses along with the MS Queensland Immunotherapy Nursing Service. Many of you will have already received this information directly but for those that have not, it is important to share your options with you and assure you of our ongoing capacity and commitment to our MS customers.

Over the last three years our nurses have been working increasingly closely with ‘specialist’ programs to ensure customers taking long term MS medications were supported and provided accurate information and supplies for those on injectable medications. Now we will be relying on these external programs. What you need to know > There will be no more follow up calls from the nurses > We do not have the capacity to maintain supply of equipment for injectable medications > We highly value our immunotherapy customers and know you will have questions. Myself and the team will do our best to answer these for you. > As a clinician and educator, my role remains and I will continue to support both customers new to

therapy and those longstanding customers. We ask for your patience and understanding if there are delays in getting back to you during this transition. > If you have not already done so – it will be important you register with the program relevant to your therapy (see table below). > You can call NeuroAssist on 1800 177 591 with any questions you may have.

Company / Drug

Program Name

Phone

Website / Email

Bayer – Betaferon

Beta-Plus

1800 557 960

Merck – Rebif

Rebif Ready

1800 073 243

www.rebifready.com.au

Teva – Copaxone

My Support Team

1800 502 802

nurseadvisor@mysupportteam.net.au

Biogen – (Avonex / Plegridy / Zinbryta / Tecfidera / Tysabri)

MS Alliance – for all therapies

1800 286 639

www.msalliance.com.au

Sanofi Genzyme - Aubagio

MS 1-2-1

1800 222 121

Novartis – Gilenya

Aspire

1300 617 667

aspire@remedyhealthcare.com.au

media hits were generated this year resulting in

$7.1M publicity value

INCOME & EXPENDITURE

$16.0M total income

see page 21 of Our Strategy

WHAT'S MAKING

$16.5M total expenditure

We take enormous pride in our annual report and it is great to have been recognised for our accountability, governance and transparency.

MS LIFE – SPRING 2017

I was diagnosed with PPMS on Valentine's Day 2014. I chose to cease work in April 2016.

NDIS

NEED HELP WITH YOUR ndis plan? Contact MS Queensland on our NeuroAssit Line 1800 177 591

TURNS ONE!

In July we celebrated the 1st birthday of the NDIS rollout across Queensland. It was a great opportunity to reflect on the life changing impact the NDIS has had on many people. We are so happy to see people living with MS and other progressive neurological diseases having choice, control and more opportunities than ever before. We just can’t wait for all of Queensland to have access. The NDIS continues to be rolled out across Queensland with it being introduced in stages to ensure we all get it right. We look forward to reflecting on the lasting impact the NDIS has had in many years’ time. For more information on the NDIS go to our website msqld.org.au/site/ndis-main

LAN S N E E U Q S M

ATE SERVICES UPD

NDIS ROLL-OUT Along with NDIS' 1st birthday in Queensland, we celebrated the NDIS arriving in the Ipswich, Lockyer Valley, Scenic Rim and Somerset regions. Next up is Bundaberg, where state clients have access to the NDIS from 1 September 2017 and all others having access from 1 October 2017.

Community Engagement with Natalie

Following Bundaberg are the following regions: Rockhampton, Gladstone and west to the NT and SA borders.

NEW SERVICE COORDINATOR FOR THE GOLD COAST The Gold Coast region, which includes Northern NSW, has welcomed a new Service Coordinator, Winnet Zhoya. Winnet has joined MS Queensland following former Gold Coast Coordinator Max Draper moving into the South Brisbane, Ipswich and Scenic Rim region.

MS LIFE – SPRING 2017

Winnet has extensive experience working across the disability services sector, coordinating community, health and social services. Her professional background is working as a disability support coordinator with both adults and children and she also has experience in behavior management and counselling. Winnet will be based out of MS Queensland’s Varsity Lakes office working Tuesdays to Fridays. Winnet is excited to deliver high quality support and services that meet your needs and expectations. Welcome Winnet!

For more information on the services we offer for everyone, including NDIS participants, read our NeuroServices article on page 12.

PWMS SUPPORT GROUP FORUM We have been in the process of reviewing the PWMS Support Group Forum to ensure it's meeting our customers’ needs in an equitable and accessible format for as many people as possible. As part of this review, a new approach is being piloted for 2017 which will see the forum move to an online format. This means all support group members can attend regardless of their locations and in a shorter format. This new forum will use a webinar format facilitated by Natalie Walsh, Community Engagement Manager and featuring members of the MS Queensland team. We hope the new forum allows more of you to join in from wherever you are located. More information will be provided through our Insight e-newsletter.

TAXI SUBSIDY SCHEME REINSTATED It was great news to hear of the reinstatement of the Taxi Subsidy Scheme (TSS) for NDIS participants. MS Queensland along with 34 other ally organisations, co-signed a letter with Queenslanders with Disability Network (QDN) in relation to the TSS/NDIS interface issues being experienced in Queensland. Working together, we have influenced the Queensland Government to reverse its original decision around the TSS for NDIS participants.

CUSTOMER FIRST APPROACH With the introduction of the NDIS, and the community services industry experiencing never before seen reform, MS Queensland must also respond to the needs of our customers and assist people living with MS to get what they are looking for from this change or the customer journey as it is known. With the introduction of the NDIS there is an increased focus on local customer engagement – working with you. MS Queensland must ensure we provide the best customer experience that we can, within the resources we have. To support this focus a new Customer Experience Department has been established.

The Customer Experience Department will bring together the Marketing and Communications Team, as well as my role into one team. This increased focus on the customer will reshape MS Queensland’s Advocacy function. The work that I have undertaken on issues affecting Queenslanders living with MS continues through our Service Coordinators while MS Australia will continue to take the lead on national advocacy issues. Advocacy questions can be directed to advocacy@msqld.org.au. My renewed role will focus on more local customer engagement and particularly what our customers (YOU) want from MS Queensland. As always if you have any queries or would like to discuss anything further, please do not hesitate to contact me. I look forward to hearing from you. Best wishes,

Natalie If you have any queries, please don't hesitate to contact Natalie Walsh on (07) 3840 0823 or at natalie.walsh@msqld.org.au

MS LIFE – SPRING 2017

The NDIS roll-out continues in stages by local government area with the roll-out to be complete in January 2019.

MS QUEENSLAND AGM

S E C R U O MS RES

Along with the PWMS Support Group Forum (page 20), our AGM has also been reshaped. The 2017 MS Queensland AGM will be a shorter event made up of AGM governance activities with an organisational and research update from our CEO Lincoln Hopper, and time allowed for networking.

LIVING WELL WITH MS Complementary and alternative medicine (CAM) includes a wide variety of therapies, from diets and supplements to Yoga and meditation. Some therapies are considered to be outside the realm of conventional medicine, whilst others such as vitamin D and exercise are gaining credibility through scientific studies and clinical trials.

PWMS SUPPORT GROUP UPDATE Change is happening everywhere, and change is something we know a lot about living with MS. Like everyone, no two days are the same, and no two people will live with the same experiences as we are all very different people, living in different parts of this great state.

Issue 15 l 2010

l Complementary and alternative therapies in MS

With the introduction of the NDIS bringing further change; MS Queensland is also having to respond to this change.

MSIF15 pp01 cover.indd 1

For one-on-one support the relationship with your Service Coordinator remains one of the most important; particularly for information of what is happening where you live.

AN IN T ROD U C T I ON

Things to consider when choosing to increase sun exposure: • The heat of the sun might make your MS symptoms worse. If so, try to avoid the heat of the sun by, for example, being outside when there is a pleasant breeze. • Avoid excessive sun exposure at all times, including getting sunburnt as this is a known risk factor for skin cancer, especially melanoma. The risk of sunburn is highest in summer. Also, see Table 2 for WHO sun protection recommendations for skin cancer prevention.4 • Vitamin D is produced in the body when the skin is exposed to sunlight. Therefore, wearing a lot of clothing, like we do in winter time, will limit the amount of vitamin D we produce.

MS LIFE – SPRING 2017

• The amount of vitamin D produced under the influence of the sun depends on the strength of the sun. The strength of the sun varies throughout the year (highest in summer and lowest in winter) and varies during the day (lower in the morning and late afternoon, higher during the middle of the day). There is a certain threshold below which the body cannot produce any vitamin D. In Tasmania, we are still able to generate some vitamin D in winter time but it is less than in summer. Also, being outside early in the morning or late in the afternoon during the winter has little effect on your vitamin D levels. • People of ethnic origin who have a darker skin colour require more sun to produce the same amount of vitamin D compared to Caucasian people. • Glass filters nearly all ultraviolet radiation rays that are required to produce vitamin D in the body. Therefore, vitamin D levels do not increase if sitting behind a window.

3. Increase vitamin D through dietary intake of food Less than 5% of the vitamin D in our body comes from dietary sources. The best source is fatty fish, such as mackerel, herring and salmon. Liver, eggs and fortified foods, such as margarine and some milks, also contain a very small amount of vitamin D. For most Australians, adequate vitamin D is unlikely to be achieved through diet alone.

Recommendations for those living outside Tasmania Perform a blood test The risk of being vitamin D deficient is generally higher when living further away from the equator and lower when living closer to the equator because of differences in strength of the sun. However, behaviour such as the amount of time spent outside, the time of day being outside, the amount of clothing worn and the use of sunscreen are also important determinants of your level of vitamin D. A blood test, performed by a medical doctor, is the best method to determine whether there is a need to increase your vitamin D levels.

Information on Vitamin D levels for People with Multiple Sclerosis

Ways to increase Vitamin D levels The information provided in this brochure on vitamin D supplementation and dietary intake is applicable to all people with MS, irrespective of the location of living. However, the recommendations on sun exposure are based on Tasmanian data and might not apply to other locations. Less sun exposure might be sufficient at lower latitude locations, while more might be required at higher latitude locations. Use your local authorities, such as a Cancer Council, to guide you on the appropriate amount of sun exposure.

References

1. Working Group of the Australian and New Zealand Bone and Mineral Society; Endocrine Society of Australia; Osteoporosis Australia. Vitamin D and adult bone health in Australia and New Zealand: a position statement. Med J Aust 2005;182(6):281-5. http://www. osteoporosis.org.au/files/research/Sunexposure_OA_2007.pdf, accessed Nov 2007 2. Dawson-Hughes B, Heaney RP, Holick MF, Lips P, Meunier PJ, Vieth R. Estimates of optimal vitamin D status. Osteoporos Int 2005;16(7):713-6. 3. Vieth R, Chan PC, MacFarlane GD. Efficacy and safety of vitamin D3 intake exceeding the lowest observed adverse effect level. Am J Clin Nutr 2001;73(2):288-94. 4. WHO website: http://www.who.int/uv/en/, accessed Nov 2007

Disclaimer

This is general information developed by Dr Ingrid van der Mei of the Menzies Research Institute. The information contained in this section should not be used for individual medical advice. Please see your doctor if you have concerns or specific questions relating to your health. © Copyright Menzies Research Institute 2007 Reproduction for educational purposes permitted.

Menzies Research Institute Private Bag 23 Hobart, Tasmania 7000 Phone: 03 6226 7700 www.menzies.utas.edu.au

An Institute of the University of Tasmania

Complementary and alternative therapies in MS This article provides objective, practical and MS relevant CAM information. It highlights CAM therapies that are especially promising, as well as those that may be dangerous or ineffective.

19/2/10 14:22:11

Vitamins, Minerals & Herbs in MS

With Nat Walsh’s joining with the Marketing and Communications Team under the Customer Experience Department banner, means Nat Walsh will be asking for your input for what you want from MS Queensland to meet your needs. The Customer Experience team are focused on us, the customer, our community and asking for two-way communication with MS Queensland. If you have any queries, speak to Nat Walsh, she will be happy to hear from you. Warm regards to all, Jenni

Do you worry about UTIs?

In brief

Introduction

• Vitamin D is required for optimal bone and muscle health and appears to have a wide range of other important functions in the body. Low vitamin D may be associated with several diseases including MS.

Vitamin D is a steroid hormone that is predominantly produced in the body when the skin is exposed to the ultraviolet (UV) rays in sunlight. Vitamin D is required for optimal bone health, and vitamin D deficiency can lead to osteoporosis and influence neuromuscular function (strength and balance).

• In Tasmania, the risk of becoming vitamin D deficient is particularly high in winter and spring. For people with MS, those with a higher level of disability are more often vitamin D deficient all year round compared to those with a lower level of disability. • A simple blood test can determine your current vitamin D levels. • If levels are low, the best ways to increase your body’s vitamin D levels are to:

Take a vitamin D supplement of at least 1000 IU per day.

I ncrease your exposure to the sun safely - see tables 1 and 2.

Cholecalciferol – Vitamin D3

This can result in falls and ultimately fractures. Interestingly, recent literature has suggested that vitamin D deficiency might also be associated with the onset of diseases such as multiple sclerosis (MS), colorectal cancer, breast cancer, prostate cancer, type 1 diabetes, cardiovascular diseases and tuberculosis, indicating that ultraviolet radiation and/or vitamin D does much more in the body than maintain optimal bone health. Because sunshine and vitamin D have the potential to dampen an over-active immune system, it is conceivable that sunshine and/or vitamin D might slow the progression of MS, but this is not proven. We are currently analysing the data of the Longitudinal Study of Multiple Sclerosis in Southern Tasmania to examine this issue. Groups particularly at risk of vitamin D deficiency include those who spend less time outside, such as the elderly, or those who are institutionalised.

Findings of the Menzies Research Institute We examined the vitamin D levels of people with and without MS who were living in Tasmania (43oS latitude) and were under the age of 60 years. Figure 1 shows the occurrence of moderate to severe vitamin D deficiency (black blocks) and mild vitamin D deficiency (grey blocks) for people with MS categorized by level of disability. In the low disability group, people had no disability or could walk an unlimited distance without rest but not run. As vitamin D levels are higher in summer/autumn and lower in winter/spring, a separate graph is provided for the two seasons.

Vitamins, Minerals and Herbs in MS This booklet focuses on the use of popular vitamins, minerals and herbs by people living with MS.

Information on Vitamin D levels for People with MS This study provides information on Vitamin D and ways to increase Vitamin D levels for people with MS. Whilst the study focuses on Tasmania, it contains useful information for everyone living with MS.

You are not alone Research has shown that 41% of intermittent catheter users are concerned about UTIs on a daily basis1. Coloplast have put together a practical guide on how to keep your bladder healthy. In this booklet, we will answer some of the most common questions around UTIs, and have also gathered some facts and helpful advice that can help you keep your bladder healthy in order to minimise the risk of UTIs.

BONUS Hand Sanitiser Spray

All those who register also receive a bonus hand sanitiser spray.

Register online to download your free UTI eBooklet www.coloplast.com.au/UTI-guide 1 Source: IC user survey (Countries: US, UK, DE, NL, FR, IT), January 2016 (n=2942)

For a copy of these resources or to seek further information please contact our NeuroAssist team on 1800 177 591 or go to our website msqld.org.au/site/ms-resources The Coloplast logo is a registered trademark of Coloplast A/S. © 2017-06 CON585. All rights reserved Coloplast Pty Ltd, PO Box 240, Mount Waverley, VIC 3149 Australia.

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

17 SEPTEMBER

15 OCTOBER

20 OCTOBER

MS Swimathon Hervey Bay

Mosaic Property Group MS Swimathon Sunshine Coast

MS Moonlight Walk

MSswimathon.com.au

MoonlightWalk.com.au

11 NOVEMBER

24 NOVEMBER

11 FEBRUARY

MS Swimathon Toowoomba

Annual General Meeting (AGM)

MSswimathon.com.au

MSqld.org.au

MS Swimathon Griffith Sport (Mt Gravatt)

MSswimathon.com.au

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.

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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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