Stepping out to Support People with MS

The Official Magazine of MS Australia – ACT/NSW/VIC www.msaustralia.org.au/actnswvic

ISSN 1833-8941 Print Post Approved: Spring 2012 PP 255003/08108

Sandra The types of MS explained The benefits of Sully aquatic exercise Stepping out to support Spotlight on: people with MS Respite services

New series: MS Awareness Emerging MS Month: treatments Highlights! www.facebook.com/MSAustralia http://twitter.com/MS_Australia www.youtube.com/MSSocietyAustralia

Co-editors: Rebecca Kenyon & Sandra Helou Publisher: Multiple Sclerosis Limited ABN: 66 004 942 287 Website: www.msaustralia.org.au/actnswvic Frequency: Published quarterly in March, June, September, December Advertising enquiries: Tel: (02) 9646 0725, Fax: (02) 9643 1486, Email: [email protected] Design: Byssus, (02) 9482 5116, www.byssus.com.au Photographs: The stock images appearing in Intouch are sourced from Thinkstock.com Cover photography: Dan Freede Photography Printing: Webstar Print

MS Australia – ACT/NSW/VIC ACT Gloria McKerrow House 117 Denison Street Deakin ACT 2600 Tel: (02) 6234 7000 Fax: (02) 6234 7099 12 NSW Studdy MS Centre 80 Betty Cuthbert Dr Lidcombe NSW 2141 Tel: (02) 9646 0600 Fax: (02) 9643 1486 Victoria The Nerve Centre 16 54 Railway Road Blackburn VIC 3130 Tel: (03) 9845 2700 Fax: (03) 9845 2777 11 MS ConnectTM (information and services): 1800 042 138 (free call) Regional offices: Visit www.msaustralia.org.au/actnswvic and click on ‘Contact Us’ Privacy Policy: Visit www.msaustralia.org.au/ actnswvic for our full policy document ISSN: 1833-8941

Disclaimer: Information and articles contained in Intouch are intended to provide useful and accurate information of a general nature for the reader but are not intended to be a substitute Take our Client Satisfaction Survey for legal or medical advice. Multiple Sclerosis Limited is not recommending medical or legal MS Australia – ACT/NSW/VIC is committed to continuing its long advice and readers must seek their own medical or legal advice as may be appropriate. tradition of providing high quality services to people with MS, their Advertising disclaimer: Advertisements families and carers. are provided to assist consumers to locate and purchase suitable products and services. Consistent with our mission, the organisation continually looks for ways Multiple Sclerosis Limited does not endorse any one product or service over another, nor to improve the quality of services it provides. do we receive any commission on sale of items. Consumers are encouraged to discuss Your feedback is crucial to this process. We are asking all people with the options for exchange or return at time of MS, as well as family members and carers to complete our short, purchase with a particular supplier as Multiple Sclerosis Limited is not liable in the event the confidential Client Satisfaction Survey by 30 September, 2012. product is not satisfactory. MS Australia – ACT/NSW/VIC is a not-for- Visit www.msaustralia.org.au/actnswvic and click profit organisation that has been supporting and on the link to our Client Satisfaction Survey helping people with multiple sclerosis (MS) since 1956. Through an extensive network of centres, or branches, support groups and health services, the organisation provides specialist programs to people with MS, their families, carers, friends and Call MS Connect on 1800 042 138 and request healthcare professionals. that a survey be mailed to you.

2 intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch 3 Contents CEO’s message

FEATURES Welcome to the Spring 2012 edition of 11 My story: Working it out Intouch. There has been a lot going on in Jan Loudon shares her story from the world of MS and across our organisation a working carer’s perspective. in the past few months. In particular, MS Awareness Month created a hive of 12 Cover story: activity throughout May. Corporates, local MS Awareness Month communities and the media all rallied to ‘Kiss Highlights from this year’s activities Goodbye to MS’; to help raise awareness held to ‘Kiss Goodbye to MS’ and of the effect that MS can have on people’s raise awareness and funds for MS. lives and, consequently, how our organisation can help. Check out 16 What’s in a name? page 12 –14 for an insight into some of the great activities that took Your guide to understanding place. All of this culminated in our annual MS Walk and Fun Runs the broad types of MS – their held in Melbourne, Sydney and Canberra on 3 June. This year’s characteristics, current treatments event exceeded everyone’s expectations with more than $1.2 million and research status. raised to support people living with MS. I would like to thank all of our participants, fundraisers, staff and volunteers who contributed to 24 Emerging treatments series: the success of MS Awareness Month! Part one With Carers Week fast approaching in October, I would also like The first installment in this new to acknowledge the tireless and unconditional contribution that series features a timeline outlining family members and carers make within the MS community. In his how MS treatments have emerged column on page 7, Andrew White, Chair of the MS Advisory over time. Council pays tribute to Robin ‘Bushy’ Laird who recently passed away. Bushy not only cared for his wife with MS, but spent MS COMMUNITY many years supporting other carers and advocating on their behalf 27 Community fundraising: to governments. All for a good cause From a corporate perspective, we have entered a new financial 32 28 Volunteers in action: Meet those year with clear objectives for the year ahead. These will focus on helping to make a difference continually improving services for people with MS, building on 30 Peer support: the MS Australia brand and reputation, expanding on current Sharing the MS journey fundraising activities, and bringing business-like efficiencies to our operations and costs. 31 Support group profile: Shepparton MS Support Group The National Disability Insurance Scheme will continue to be a key focus of our advocacy efforts. In July, a gathering of Australia’s peak neurological organisations, including MS Australia, resolved HEALTH & WELLNESS to launch a campaign to ensure people living with progressive 32 Take the plunge: neurological diseases are not left out of the proposed scheme. Read The benefits of aquatic exercise more about this on page 8. 34 Take charge of your health: I hope you enjoy reading this edition of Intouch. The Essential Medical Equipment Payment (EMEP) explained

LIFESTYLE 35 Celebrating artistic talent Gearing up for this year’s MS Art Jim Carroll Exhibition, plus other art programs CEO, MS Australia – ACT/NSW/VIC across our regions 36 Spotlight on: Respite services

REGULARS Look out for 5 Your Say this symbol for 6 News information and 9 Q&A articles specifically 10 MS insights relevant to family 15 MS Readathon 20 Events members and carers 23 Family and carers *NEW* CARERS of people with MS. 39 New resources

2 intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch 3 Editor’s note Spring has sprung, thank goodness! This year’s winter has not been kind, with the various cold and flu strains taking their toll. I hope we have now seen the worst of it and can all look forward to the spring in full bloom! This issue of Intouch is jam-packed. Last year’s reader survey indicated that people with progressive forms of MS would like to read more about what is being done to help find a cause, treatment and, ultimately, a cure for these types of MS. While much of the published research may seem to focus on relapsing-remitting MS, there has (and continues to be) much research into progressive MS – a lot of which, unfortunately, goes unpublished if clinical trials are unsuccessful. To help keep you up to date, we have included a detailed feature on the ‘Types of MS’, which explains how the different disease courses were established and where each is up to in terms of treatment and research. This issue also marks the beginning of a new series on ‘Emerging Treatments in MS’. This first article details how, in general, treatments have emerged over time. In subsequent editions of Intouch, we will focus on specific MS treatments, such as stem cells and oral medications – how these have emerged, their current status and future outlook. We’d love your feedback and remember, you can now receive Intouch via email. If you would like to receive the magazine and the MSRA Next newsletter in this format, please email me at [email protected], or fill in and return the form on the front of your mail package. Finally, a note to let you know that I will be taking leave in October to welcome a new addition to my family. The magazine will be left in the capable hands of the Public Affairs Team, and I look forward to returning mid-next year. Please continue to contact us on the Intouch email address or call (02) 9646 0725.

Rebecca Kenyon Editor

www.facebook.com/MSAustralia http://twitter.com/MS_Australia www.youtube.com/MSSocietyAustralia

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4 intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch PB Thank you for sharing your stories, tips and feedback. Your say We’d love to hear more!

Write to us at [email protected] or post your letter to ‘Intouch’, PO Box 210, Lidcombe NSW 1825

Restored hope Ann’s letter (Winter 2012 edition) gave me something I had lost when facing my trigeminal neuralgia all alone in my little home, with my family, in my community with my (what sometimes feels like) battalion of doctors. I had lost hope of a solution, or even an improvement. I had forgotten that if we don’t use our voices and share our knowledge – the good, the bad and the ugly for me, but maybe ‘worth the chance for you!’ – we often miss opportunities to empower each other with our knowledge, skills, experience and expertise in managing our diseases – the commonalities and the Walking the talk curiosities. Thank you Ann! Thank you for the article you published in the Winter 2012 Judy, via email edition about my journey with MS. I’ve been getting a lot of positive feedback which has been quite nice. I thought I would let you know that the MS Walk and Fun Run was held last weekend, and although the weather Write in to WIN! wasn’t too kind to us, we still managed to finish (and enjoy) the walk – we just wore ponchos! Keep your feedback and stories Camp Saliba managed to beat last year’s effort. We had coming in! Next issue’s theme will 48 team members and raised more than $22,000. We even scored the honour of being the highest fundraising team in focus on ‘Emotions & MS’. NSW. The MS Walk and Fun Run just seems to be getting bigger and better each year. If there is a positive side to having MS, for me, it has been the chance to experience, firsthand, the kindness and generosity in people. I feel so fortunate. George Saliba, NSW Thank you! Please pass on my thanks and congratulations to all involved in production/publication of Intouch magazine, Winter 2012 edition. It is a ‘bumper’ edition with many great articles and Each reader to have their letter published will win an contributions. The ‘Letters to the Editor’ are always good to read and all references to ‘progressive’ forms of MS are very organic tea and chocolate encouraging. Keep up the good work! indulgence pack. M. Abbott, Vic

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Easily dismantles to fit in your car boot. PB intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic springwww.scootersaus.com.au 2012 intouch 5 SCO0059_INT_v2 NEWS

Did you know? The Australian Bureau of Statistics (ABS) has released new national data about people living with MS. In the 2009 Survey of Disability, Ageing and Carers (SDAC) there were estimated to be 23,700 Australians living with MS (0.1 per cent of the population). The survey also revealed that statistics Mary Webb accepts her prestigious award. surrounding gender and MS remain the same, with three quarters of Australians who report having MS being female. Information has also been published relating to the labour force and employment Top honours for restrictions as a result of MS, and the ABS has released a new profile of disability. Visit ACT volunteer www.abs.gov.au for more information. One of our organisation’s most dedicated volunteers Dr Mary Webb took out top honours in this year’s ACT New relapse resource Volunteer of the Year Awards. Australian research shows that around 85 per cent As well as being recognised as Volunteer of the Year in of people diagnosed with MS initially experience her nominated category of Community Services, Mary was relapsing-remitting MS. The unpredictable nature awarded overall 2012 ACT Volunteer of the Year. of relapses can make them challenging to predict, The Award ceremony was held during National Volunteer diagnose and manage. Week in May and acknowledged the hard work of many A new MS Australia – ACT/NSW/VIC resource, outstanding volunteers in the ACT and Capital Region. Joy Managing a Relapse: For people living with MS, Burch MLA and Mary Porter MLA presented Mary with her provides information on identifying a relapse and awards which will be displayed at Gloria McKerrow House. things to keep in mind when preparing for a potential Mary (a person with MS whom we featured in the Autumn relapse. A template is included to guide people with 2012 edition of Intouch, p.26) volunteers her time to fulfil a MS through this challenging time. variety of roles, working among and for people affected by To download a copy of the booklet, visit MS, and making a significant contribution to people living www.mssociety.org.au/booklets.asp or call MS with disability and the community as a whole. Connect on 1800 042 138. “Mary’s positive attitude and her understanding of chronic conditions has an impact on every person she meets,” credits Mirimba Kovner, ACT Coordinator, Volunteers and Events for MS Australia – ACT/NSW/VIC. Managing a Relapse Mary’s scope of volunteer work includes being appointed For People Living with MS to the Board of Directors of the Multiple Sclerosis Society of the ACT in 2002. She remained as a director and Vice- President until the merger of the Society with MS Australia – ACT/NSW/VIC in 2008. Mary is the convenor of the MS ACT People with MS Group; is a member of the MS ACT Southern NSW Advisory Committee; has been an MS Advocate since 2005; and an MS Australia – ACT/NSW/VIC Peer Support Volunteer since 2010. Mary also gives her time towards MS fundraising events and office support, and is a member of the ACT Disability Advisory Council. “In all that Mary does, she is cheerful, accommodating and professional,” adds Mirimba. “She is humble in her achievements, as many committed volunteers are, frequently recommending others for recognition above herself. Mary Webb is truly deserving of the honour of Volunteer of the Year.” TM Freecall 1800 042 138 www.msaustralia.org.au Please join us in congratulating Mary and thanking her for all she does for people with MS, our organisation and the community at large. n

6 intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch 7 News from MSAC

New wheels for Lidcombe residents The Goodman Foundation generously donated a new Hiace van to MS Australia – ACT/NSW/VIC in May. CEO Jim Carroll (pictured below, right) formally accepted the new Hiace from Goodman Australia’s general manager Jason Little (also a former Wallaby) in an official ceremony at the Studdy MS Centre in Lidcombe. By Andrew White, This was followed by a morning tea with the residents Chair, MS Advisory Council who will benefit most from this wonderful donation. n We each have our own personal journey with MS, including unique experiences with treatments that may or may not have worked. As such, many of us are vigilant to see what emerging treatment options might be ahead for us; perhaps even a cure! As you absorb this edition of Intouch, it may inspire you to start a discussion with MSAC about how MS Australia – ACT/NSW/VIC can best support you to navigate the MS treatment maze. MSAC, then, has the opportunity to share the thoughts and needs of the MS community with the organisation’s Board. Go to the MSAC Facebook page or send us an email at [email protected] On another note, MSAC is almost ready to survey its database about their employment experiences. If you would like to participate and have not yet registered with the MSAC database, please hurry to www.msac.org.au and do so. We and the Board very much value your input and opinions. Finally, it is with great sadness that MSAC and the broader MS community have recently lost a dedicated, hardworking and truly valued friend, Robin Hana Sykora has ‘Bushy’ Laird. Through MSAC, I had the privilege of been caring for working alongside Bushy for more than a decade and people with MS for three decades. I was inspired by his voluntary commitment to the MS community, in particular carers. Bushy devoted himself to the care and support of his wife who had MS, as well as supporting fellow carers as a Peer Support Volunteer for more than 10 years. Having a Masters in Public Policy, Bushy was a great advocate Nurse celebrates 30 years for carers and family members, working with with our organisation MS Australia in lobbying the government around June 21 marked a special day for Community carers’ rights, and raising awareness of carers’ needs Nurse Hana Sykora who, on this day 30 years ago, in the community. Bushy was both passionate and compassionate began working for the MS Society of Victoria. and is very sadly missed by all of us who spent time Hana started with the Society in 1982 as a with him. Our thoughts are with his family and loved Registered Nurse at the St Albans Accommodation ones at this time. Unit. In June 1990 she became the Sister in Charge of Accommodation and Team Specialist at St Albans. In 1996/97 Hana moved across to work at the Williamstown Accommodation Facility, and took on the role of Community Nurse across both the Williamstown and Watsonia facilities in January 2008. We would like to thank Hana for her continued dedication to our organisation and people living Email: [email protected] with MS. Telephone: (03) 9845 2794

6 intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch 7 NEWS ADVOCACY

Neurological leaders join forces to influence NDIS In July, a gathering of Australia’s peak neurological organisations resolved to launch a campaign to ensure people living with progressive neurological diseases are not left out of the proposed National Disability Insurance Scheme (NDIS). The Neurological Alliance Australia (NAA) represents Australians living with conditions like MS, Parkinson’s disease, motor neurone disease (MND), muscular dystrophy and Alzheimer’s disease. During the summit held in Melbourne, the NAA focused on what needs to be done to make the NDIS work for people living with these incurable progressive neurological and neuromuscular diseases. The NAA has resolved the campaign to influence government to focus on: 1. eligibility, starting at diagnosis, using specialist assessment and quality assessment tools. 2. ongoing reviews for individuals throughout their disease course.

We will keep you informed of the NAA’s progress. n

A win for ACT residents to keep cool During MS Awareness Month, Canberrans living with MS welcomed the ACT government’s announcement that it will expand the Life Support Rebate to include people suffering from the debilitating effects of heat intolerance. The decision, delivered in May, followed a campaign led by MS Australia’s Advocacy Team that called for the implementation of a medical energy 35 years of the concession for people living with heat intolerance – a serious medical condition Geelong Auxiliary that is a common side effect of conditions like MS. Jim Carroll, MS Australia – ACT/NSW/VIC CEO, said the announcement After dedicating 35 years to would bring cool relief to more than 600 people living with MS in the ACT. supporting people with MS, “People with MS and other heat intolerant conditions don’t have a choice the Geelong MS Auxiliary in about running their air conditioners as temperatures climb to high levels. This Victoria finished up in July. Kerry announcement will bring financial relief to many people with MS in the ACT. Reiter-Lynch, Volunteer Programs With electricity prices on the rise, it will mean the cost of keeping cool is less Manager, and Andrew Long, of a burden.” Company Secretary, represented For more information about the concession, visit www.dhcs.act.gov.au/wac/ the organisation at a lunch with the concessions/life_support n auxiliary members to acknowledge their tremendous work. Over the years, the group has CCSVI parliamentary briefing raised more than $900,000 for In June, MS Australia representatives attended a Parliamentary briefing on people living with MS. Betty Tippett chronic cerebrospinal venous insufficiency (CCSVI) and MS. (pictured right) is the founding Robert Pask, National MS Advocates Coordinator; Prue Car, Public Affairs member of the group, joined shortly Manager, MS Australia – ACT/NSW/VIC; and MS Australia President Rob afterward by Marie Mowat (left) Hubbard joined Senator Gary Humphries, Senator Claire Moore, Tony Windsor, whose husband Graham lives with Laura Smyth, staffers including Janelle Safron’s Chief of Staff and eight other MS. The most popular fundraising advisors to hear presentations around CCSVI and the current situation items were cookbooks put together in Australia. by the ladies, which impart their Phlebologist Dr Paul Thibault, CCSVI Australia’s Kerri Cassidy and MS secret recipes. We thank all involved Australia President Rob Hubbard delivered presentations. The briefing was a in the Geelong Auxiliary for the positive experience for all involved, providing the opportunity to present a range positive impact they have made of information to Parliament. to the lives of people with MS, Many thanks to Robert Pask for his dedication and hard work in organising particularly in the Geelong area. n the briefing, speakers and inviting MPs to attend. n

8 intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch PB Your MS-related, health and lifestyle Q&A questions answered.

If you have questions about MS-related concerns, please contact MS ConnectTM on 1800 042 138.

I have heard that the Mobility Parking Scheme may be changing. How will the changes affect people with MS who currently hold a permit? – Anon, NSW

Since 2008, the Australian Government has been working with states and territories to harmonise disability parking schemes across the country. This is mainly due to the fact that state differences in eligibility and parking concessions can cause l parking concessions that are in line with the national confusion for people moving between states. In addition, minimum standards and continue to meet the needs of state and territory permits are not recognised internationally permit holders. and a single national disability parking scheme would make l a compliance and enforcement process to discourage gaining international recognition more simple. misuse of permits. As a result, the Australian Disability Parking Scheme (ADPS) is being implemented across Australia. States have Under the ADPS, disability parking permits are still issued by had to, or are currently, reviewing their existing disability state/territory authorities. Many have started issuing permits parking schemes to align with the ADPS criteria and with the common national design to aid interstate usage. provisions. The Federal Government dedicated For more information, visit www.disabilityparking.gov.au n $3 million over three years to assist the states and territories roll out the scheme. The NSW Mobility Parking Scheme (MPS), for example, has been one of the most generous in the country and is currently under review by an independent advisory committee. The review will identify improvements to the current MPS before the ADPS is adopted in NSW. Did you know... MS Australia – ACT/NSW/VIC has made a submission to the MPS review. A copy of this can be viewed at that the Calwell, Curtin, Jerrabomberra ® www.mssociety.org.au/media-advocacy.asp and Wanniassa Community Bank In July, the NSW Government published a discussion Branches give up to paper outlining the potential changes. It highlighted issues 85% of their profits back with the current MPS, which relate to the abuse of the scheme, either through permits being too easily obtained or to the community? being misused by non-permit holders. The discussion paper received widespread media This support comes in the form of coverage with some permit holders concerned about the donations, grants and sponsorships, proposed changes; in particular, changes to eligibility and the and goes towards helping organisations implementation of timed parking in disability parking spots. like MS Australia enhance the quality Overall, the review of the MPS in NSW (and other of life of people with MS. states/territories) aims to provide: l an improved application process, ensuring the applicant’s functional ability to walk is accurately and transparently assessed according to the national eligibility criteria. The national criteria are based on assessing functional ability to walk rather than a person’s medical condition. The criteria will be supported by an application process and guidelines for medical practitioners (including occupational therapists and physiotherapists) to make

Thinkstock/Jupiterimages determining eligibility more transparent.

PB intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch 9 The latest revelations in global MS insights MS research.

Making sense of MS research Since 2010, researchers at La Trobe University in Melbourne have been working with MS Australia and the MS community to create a website that provides high quality research information to people with MS and their families. The researchers spoke to 60 people with MS and family members of people with MS, in Victoria and Tasmania, to explore how they find and use health information (particularly from the internet). They found that people with MS are looking for unbiased, practical, clear and current information about MS treatments. The internet is a valuable information resource, but many people are sceptical Update: Cannabis about the quality of health information online. extract as MS With this in mind, the research team designed some consumer-friendly MS treatment research summaries and tested them with people with MS, family members, health professionals and MS Australia staff. Overall the feedback was positive, with British researchers released the many helpful suggestions made for improvements. much-anticipated results from the This feedback is being incorporated into the design of a new consumer-friendly CUPID trial (Cannabinoid Use in MS research website. Look out for the website being promoted through MS Progressive Inflammatory brain Australia in the coming weeks. For more information about the project, visit Disease) in May. www.latrobe.edu.au/chcp/effectiveness/msindeep.html n Some early studies of cannabinoids, including human trials and laboratory models of Stress and MS MS, had suggested that THC (the In a recent study published in the active component of cannabis) journal Neurology, American scientists may protect neurons from reported results from a randomised degeneration. The CUPID study clinical trial of stress management set out to investigate whether THC techniques for people with MS. is safe and effective in slowing There is increasing evidence that progression in people with MS stress is related to disease activity, so over a three-year period. It also this study looked at whether stress aimed to examine the value management could reduce lesions in of the trial design, which used people with MS. methods such as patient-based Promisingly, participants who assessments as well as traditional received stress-management treatment clinical outcome measures. over 24 weeks showed reduced Overall, the study involving 493 people with primary or disease activity (in both active lesions secondary progressive MS, and more permanent lesions) through found no evidence that THC has repeated MRI scans. Stress levels were an effect on MS progression. also significantly reduced, as measured However, there was some by questionnaires. However, after the evidence that THC might have a treatment period ended, the reported beneficial effect in people whose differences between this group and clues as to why the results were MS was less advanced. As this the control group (who did not undergo lost and which parts of the stress was only found in a small group of treatment) were no longer evident. management technique are most people, it will require confirmation Future studies that use a shorter, useful in MS. More detail on this by further studies. more focused stress-management paper can be found on the MSRA Results from the UK-based treatment approach may provide website: www.msra.org.au n Multiple Sclerosis and Extract of Cannabis (MUSEC) study were Is it MS? also recently published. Positively, this study found that cannabis More than 4,300 people from 90 countries took part in the Multiple extract may assist in the treatment Sclerosis International Federation’s ‘Is it MS?’ survey. The MSIF has of muscle stiffness in MS. We published a summary of the results, including interesting statistics on the way will keep you updated as more people feel about their MS diagnosis. Visit the ‘News’ section of the MSIF information becomes available on website to find out more: www.msif.org these outcomes. n Thinkstock/iStockphoto/ Ron Chapple Studios

10 intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch PB My story: Working it out

Depending on the circumstances, carer roles can vary greatly. Jan Loudon shares how MS made her the main breadwinner, and how she deals with the challenges of her husband’s diagnosis. By Sandra Helou CARERS

When Jan Loudon’s husband Col was diagnosed with chronic fatigue and fibromyalgia in 1993, they both suspected that something else was wrong. “We now know Col’s first [MS] relapse was in 1993, when he was diagnosed with chronic fatigue,” explains Jan. Frustratingly, Col wasn’t officially diagnosed with MS until 2006 and, in 2008 he gave up full-time work due to persistent fatigue. Jan, now 55, continues to work as a special education teacher to help make ends meet. “I found it very confronting to realise my partner has a chronic condition,” admits Jan. “I also had to come to terms with having all the financial responsibility.” Having experienced these difficulties, Jan encourages those facing similar circumstances to seek counselling. “It Jan and Col on their was difficult for a while but our attitude campervan trip across the changed through counselling. I am Nullabor Plain last year. blessed that Col is still quite capable and he makes a great house-husband. This is why, Jan says, she became “The local Men’s Shed has also been He does everything around the house a Peer Support Volunteer with MS brilliant. We moved house recently and so much better than I would!” Australia – ACT/NSW/VIC. “I had no we had 10 guys come around to help support whatsoever when Col was us. If you can, tie into that service – it’s Seeking support diagnosed. Now I talk to other carers brilliant. Most of our support has come Talking to Jan, it’s apparent the and assure them they are not alone.” from the community.” challenges aren’t just personal. “As a Talking to carers through her peer Not surprisingly, Jan gives the carer, I found it very frustrating that [a support role has also made Jan realise impression she isn’t one to give up lot of support] is for non-working some of the difficulties others face. easily. “You’re a long time dead,” she carers. In fact, there is even less “My husband looks well a lot of the laughs. “My motto is ‘carpe diem’: support because we do work. For time and people don’t believe there is seize the day.” Jan is currently doing example, we don’t get much financial anything wrong with him. They think a Diploma in Counselling and, when assistance and even carer associations he doesn’t work because he is lazy she does have the time, she loves tend to run activities from Monday and I just do everything. They don’t scrapbooking, walking along the beach to Friday. I have found very little for understand the disease and I think with her two dogs, and fishing and working carers so I would be very a lot of carers don’t get the support kayaking with Col. “I am not saying that interested in doing something about they need because of that. I am lucky I never feel down, we all do; it’s human that. I think society presumes that because our kids are wonderful. If I nature. But you don’t know what’s being a carer means you don’t work called and asked for help, they would around the corner so enjoy every day but we working carers are around.” be here tomorrow. you have with those you love.” n

Would you like to share your story with other people living with MS? Contact the editor on (02) 9646 0725 or email [email protected]

PB intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch 11 MS Awareness Month highlights Throughout May, MS Awareness Month created a hive of activity aimed at raising awareness of the effect MS can have on people’s lives, as well as fundraising to support the cause. Here is a snapshot of some of the fantastic events that took place across our regions throughout the month.

Kiss Goodbye to MS kicked off in Federation Did you know? Square, Melbourne. Activities and events took place in more than 75 countries around the world to celebrate World MS Day on 30 May. This year the international MS movement came together in the campaign ‘1,000 Faces of MS’ to raise awareness of MS. Hundreds of people around the world shared their thoughts on what living with MS means to them by posting on the MS International Federation virtual postcard wall. Read more about World MS Day activities around the globe at www.worldmsday.org

A family affair Family members and carers of people with MS were encouraged to join in the MS Awareness Month activities, with 80 people gathering to enjoy the MS Family Barbecue held at the Auburn Centre for Community in NSW. Proudly sponsored by the Rotary Club of Concord, people with MS and their families, residents and respite clients from the Studdy MS Centre at Lidcombe, and MS Kiss Goodbye to MS Australia – ACT/NSW/VIC staff shared their experiences Launching on 1 May in Melbourne and Sydney, the Kiss over a relaxing lunch. Goodbye to MS campaign was off to a smashing start. The “It was great to learn from other people with MS and Channel 7 Sunrise team made their way to Martin Place in their carers who provided insight that I was able to learn NSW, where Mark Beretta took to the microphone as MC, from,” says John, pictured below at the barbecue with his sharing information about MS and telling the crowd how to wife Anita, an MS Australia – ACT/NSW/VIC volunteer. get involved. Minister for Health Jillian Skinner also spoke and musician Jim Conway (who has MS) wowed everyone with his skills on the harmonica. In Melbourne, MC Georgia Sinclair (whose sister lives with MS), comedian Tim Ferguson and former Australian of the Year Simon McKeon joined supporters in Federation Square to spread the word. Events that followed to help raise funds and awareness for MS included a lip-smacking Olympic send off for the Australian Women’s Basketball team at Parliament House (pictured above) and a fundraiser at Kirribilli House on 30 May to mark World MS Day. You can view photos, videos and read more about Kiss Goodbye to MS events and activities at www.kissgoodbyetoms.org.au

12 intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch 13 WALK

Sandra Sully was the official ambassador for the MS Walk and Fun Run, appearing in media campaigns and attending the Fundraising to new heights Sydney Walk. “I’d heard of two women who jumped out of a plane to raise money for MS and I thought to myself, ‘I might be tempted to jump out of a plane to raise $2,000 for MS’,” says a daring Kath Nielsen, who is a member of the Hunter MS Branch in NSW. “At the same time my son was planning a skydive, which was a present for his 21st birthday. I asked him if he MS Walk and Fun Run exceeds target would wait to do the skydive with me during MS Awareness Month. He thought that would be ‘cool’ and it kind of just This year we managed another big win for people living snowballed from there. with MS through the annual MS Walk and Fun Run. “I raised $3,500 for MS by doing the dive and we’ve Not only did participants have a fantastic day walking decided it is going to be an annual event. I had about 30 or running through their home capitals in Melbourne, friends come out and watch me and at least six said, ‘Wow! If Sydney and Canberra, everyone dug deep to support you can do it, we can do it, so count us in’. the MS cause. “I am looking forward to next year because now I know We are proud to announce that the event exceeded what to expect. I can even give other people a few pointers. its fundraising target to reach more than $1.2 million! I nearly lost my glasses because you drop at 220km an hour We would like to congratulate all participants and for a minute and then when your chute opens you fly back fundraisers, including Nicole Jenks for her amazing up again. Over the next few months we’re going to work out individual fundraising effort of $20,100, and our top registration forms and waivers for people who want to take fundraising team Hogan’s Heroes led by Mick Hogan. Both Mick and Nicole (pictured below) live with MS and Image: Courtesy of the Maitland Mercury part next year.” have been inspirational to all living with the disease. “This is my third year participating and I now have a team of over 50 people who have helped me raise more than In the media: $20,000,” says Mick. “I was diagnosed at 21 and I’m l Channel 10 News promoted Kiss Goodbye to now 28. I’m relatively healthy and that’s largely thanks to MS during its weather cross with Tim Bailey. MS the efforts of MS Australia – ACT/NSW/VIC.” Australia – ACT/NSW/VIC CEO Jim Carroll spoke We would also like to acknowledge the enormous about the forthcoming MS Walk and Fun Run. effort of our fundraising and events team and, of course, l NBN News featured a story on the MS clinic at the hundreds of volunteers that contribute their time to Newcastle’s John Hunter Hospital, and fundraisers make events like this possible. Justice and Alannah who raised $40,000 by To view photos and videos from the event, visit holding a ball for Kiss Goodbye to MS. Watch www.mswalk.org.au ‘Kissing MS Goodbye’ online at www.nbnnews. com.au/index.php/2012/05/22/kissing-ms- goodbye/ l MS Community Shops ran the Dressed by MS Community Shops campaign. Using their Facebook page, the shops showcased the high quality stock they sell, encouraging visitors to upload photos of their own fabulous finds. It was also a chance to share the message that sales make a difference to the lives of people with MS. Search for the MS Community Shops page on Facebook to find out more.

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Knowledge is power People with MS and health professionals benefited from some insightful MS education sessions held throughout MS Awareness Month.

l Researcher Dr Rex Simmons presented an update on the Australian MS Longitudinal Study for our clients and staff. l Forty health professionals attended a presentation, Delivering the message MS in the 21st Century, at The Nerve Centre in MS Awareness Month is a busy time for our MS Ambassadors as they talk to the Blackburn, Victoria. wider community about MS and create awareness for what it means to those living l An information session for with the disease. health professionals was This year our Ambassadors participated in a range of activities throughout May, held on World MS Day at including presentations to universities, colleges and community groups; interviews the Studdy MS Centre in with television, radio and print media; speaking at corporate functions; addressing Lidcombe, NSW. Seventy participants, the public and presenting awards at our major events; as well as local physiotherapists, sharing their stories during education and awareness programs. occupational therapists and Jessica was one of our very active Ambassadors who, along with many others, other health professionals contributed to a successful campaign throughout MS Awareness Month. Now 23 attended this event. and living in Wallerawang, NSW with her partner Craig and Jemima the pup, Jess l More than 100 people was diagnosed with MS in 2008 and has been an MS Ambassador for four years. attended our annual MS “I decided to become an MS Ambassador because the first time I spoke publicly Research Update in North about my MS, I was addressing the students at my former high school. The staff Sydney. Topics included the were participating in the 2008 Gong Ride and trying to raise funds and support. I use of adult stem cells in the couldn’t believe the impact I had in terms of boosting enthusiasm, just by sharing treatment of MS, immune my story – it made MS real for them. responses in children with “I feel inspired in my role as an MS Ambassador, educating the community MS, cognition and MS, and about what I consider to be a fascinating disease. MS affects people in different an update on MS research ways and there are so many misconceptions to challenge. My mission is to get in Australia and worldwide. people excited about finding a cure. The event was recorded “During the Kiss Goodbye to MS campaign, I filled my office with red kisses and will be available shortly and posters. My employer also facilitated a couple of articles in the local press. through the MS Library. The highlight was an interview with Prime News which broadcasts to the Central l The organisation was West of NSW. delighted to welcome 35 “As an MS Ambassador, the focus of my campaign was to put MS on the people to Gloria McKerrow map in the Central West. I am hopeful I have linked a local face with the disease, House in Deakin to listen which will increase awareness and fundraising in the community. The biggest to Dr Tuck, an ACT highlight was having people come up to me in the street saying, ‘Hey, I saw you specialist neurologist, give a on the news last night; I can’t believe you have MS!’, and I’d have an opening to presentation on recognising discuss the disease. To know the stories are making an impact on the community and managing an MS is hugely satisfying. relapse. “I am living proof that MS doesn’t have to control your life. I work full-time and follow a healthy lifestyle. I have found myself in a wheelchair many times and have met many people who aren’t as lucky as myself, but I believe that a cure is just around the corner. With a positive attitude I believe anything is possible.” n

14 intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch PB MS READATHON

Introducing the ‘virtual’ 2012 MS Readathon When the first MS Readathon Hosted by Sydney Grammar School volunteers walked into school halls and and Edgecliff Preparatory School, MS classrooms to deliver presentations Ambassador Stephen Papadopoulos about the MS Readathon program shared his MS story and Kayla Sandry, 33 years ago, technology was limited. the 2011 MS Readathon highest Mobile phones, laptops, iPads, the fundraiser, encouraged other students internet and other tech-savvy devices to pick up their books and help make a were still years away from being difference to others, simply by reading. developed. Another first this year was to All those years ago, no-one imagined welcome adults into the world of it would be possible to provide a ‘virtual’ the MS Readathon. Participants school visit to thousands of schools, just have ranged from babes in arms at the click of a button; or that it would to grandparents reading with (and be possible to provide high quality, without) their grandchildren. The interactive training to more than 100 MS Readathon truly is a fundraising school presenters as they sat in their program that everyone can get own lounge rooms. Welcome to the involved in and there has never been a 21st century! better reason to read! In July, hundreds of schools ‘logged There is still plenty of time to ask on’ to see journalist, publisher and host friends and family to sponsor your

Jennifer Byrne, MC of the ABC’s First Tuesday Book Club reading efforts. for the inaugural live Jennifer Byrne MC the inaugural live For more information, visit MS Readathon. MS Readathon school presentation. www.msreadathon.org.au n

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PB intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch 15

Liberty_132x88.indd 1 3/07/2012 4:06:48 PM Feature What’s in a name? MS can affect people in many different ways; however, understanding the broad types of MS – their characteristics, current treatments and research status – can help people to understand their own disease, how it is best treated and what to expect in the future.

One of the several intriguing mysteries of MS is its variability. Some people have rather severe forms of MS, leading to marked disability and dysfunction, while others may have a course so mild that it is not diagnosable or even noticeable, except as a surprise finding at autopsy. This variability has long been recognised, but a standardisation of the terms used to describe the clinical courses of MS was not undertaken until 1995. MS had just entered the ‘disease treatment era’ and new clinical trial designs needed to use more similar groups of subjects. A committee of the National Multiple Sclerosis Society (USA) undertook the task of [classifying] the clinical courses of MS. At that time, the committee looked to see if there were reliable ways to measure the disease course – called markers. profession] should be better able to use these definitions for While MRI features play an important role in the diagnostic making prognoses and deciding on the best treatment for process, there were no MRI features that distinguished the individuals. clinical sub types of MS. Similarly, a search for a laboratory biomarker in blood or cerebrospinal fluid was unsuccessful. Relapsing-remitting (RRMS) The absence of a validated, reproducible biomarker About 85 per cent of people with MS initially have RRMS. for the disease course still eludes us, although promising RRMS is characterised by clearly defined disease relapses immunologic and genetic markers are under investigation. (episodes of acute worsening of neurologic function) with full Developing a consensus on the definitions for the different recovery or with some after-affects upon recovery. Periods courses of MS was accomplished through a survey of between disease relapses are characterised by a lack of members of the international MS clinical research community. disease progression. The period of time between relapses is Of the 215 persons sent the survey, 125 responded and highly variable. their input formed the basis of the following definitions used The characteristics of clinical relapses may vary widely widely today. Importantly, these definitions are a broad way of in both type and severity. It is well known that a significant classifying a disease which varies greatly between individuals. portion of people with RRMS subsequently enter a They describe the disease pattern and not the severity of the secondary progressive disease course, with research individual disease course. indicating the time from RRMS onset to secondary Overall, once MRI and biomarker data is developed progression is, on average, about 20 years. A minority of to distinguish between the MS sub types, [the medical people with RRMS are termed as ‘benign’ when, a long time Thinkstock/iStockphoto

16 intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch 17 MS ‘types’ In 2009, the MS International Federation conducted an online survey on disease courses in MS. The responses from 1,746 people with after the onset of the disease, neurological impairment is MS yielded the following results. absent or minimal. During the last 15 years, the efficacy of numerous experimental treatments has been investigated in RRMS, with the dual aim of reducing the frequency and/or severity of relapses and, possibly, the risk of subsequent secondary progression of the disease. This has led to the approval of several disease-modifying therapies (DMTs), namely beta-interferons (Avonex, Betaferon, Rebif) and glatiramer acetate (Copaxone). These drugs for people with RRMS are now widely accepted in that they are able to reduce clinical and MRI disease activity with a reasonably good risk/benefit ratio. It is well known, however, that some individuals with RRMS may be ‘non-responders’ to one or n Relapsing-remitting 60.6% all of these treatments. n Primary progressive 10.7% Mitoxantrone (a drug also used to treat some types of n Secondary progressive 21.6% cancer), and natalizumab (Tysabri), are used in more severe n Clinically isolated syndrome 3.6% cases of RRMS, thanks to their average increased efficacy n Other or no clear diagnosis 3.5% compared with first-line DMTs. This efficacy is, however, accompanied by a greater risk/benefit ratio. Cladribine tablets (Movectro) and fingolimod (Gilenya) – the first oral DMTs – have been approved to treat RRMS PPMS. Despite their increased disability that occurs over in Australia. However, Movectro was withdrawn by the time, people with PPMS usually have fewer brain MRI manufacturer in 2011. abnormalities than people with other sub types of MS, and those lesions tend to be smaller. Primary progressive (PPMS) As PPMS does not have relapsing symptoms, it is People with PPMS represent about 10 per cent of all important to listen to the person’s own story of the disease those with MS. These people have a progressive and and combine this with tests (MRI and oligoclonal bands continuous accumulation of neurological symptoms, with in cerebrospinal fluid) in order to determine a diagnosis occasional plateaus and temporary minor improvement of PPMS. The story of gradually progressive neurological but without typical relapses. Unfortunately, what causes symptoms, including spasticity or unsteadiness, is someone to experience PPMS as opposed to RRMS is characteristic. To make the diagnosis of PPMS, the still unknown. condition must have been present for one or more years, People with PPMS tend to be older than people with which can often be very stressful. a relapsing-remitting form at onset of the disease (an To date, there is no proven or licensed DMT to slow average of 40 years old). the course of PPMS. The most common symptom is a progressive Two small studies of interferon beta could not weakness of the lower limbs with spasticity (spastic demonstrate a delay in the progression of the disease. paraparesis), which is seen in 80 per cent of people with A large study with glatiramer acetate also failed to demonstrate a substantial reduction in the proportion of people who showed progression. NEWSFLASH: Research reveals Other studies have evaluated different medications for DMTs reduce risk of MS progression the treatment of PPMS. Medications such as intravenous Until recently, it was debatable whether disease- cyclophosphamide and methylprednisone, azathioprine, modifying therapies (DMTs) work in preventing the methotrexate, cladribine, rituximab, immunoglobulin and shift from relapsing-remitting to secondary progressive autologous stem cell transplantation have not proven MS. However, it was reported in July this year that effective in modifying the course of PPMS, although some DMTs may significantly reduce the risk of progressing of these treatments continue to be investigated. Future from RRMS to SPMS. Roberto Bergamaschi, MD treatment options, including the monoclonal antibodies (Neurological Institute C. Mondino, Pavia, Italy) and natalizumab and alemtuzumab, have received much colleagues report their findings in MS Journal (2012 attention; however, as their mode of action appears to be May 31. [Epub ahead of print]). This study adds to the mediated through a decrease in cerebral inflammation, body of evidence suggesting MS therapies improve their role in PPMS may be limited. future outcomes for people with MS. Strategies to promote remyelination or to repair or

Thinkstock/iStockphoto replace damaged axons are under investigation.

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While there is no proven DMTs for PPMS, there is still a lot that can be done to treat MS symptoms in order to ‘It’s just a name’ improve quality of life. Treatment often includes rehabilitation “People with MS can live in fear of the word [using the expertise of a multidisciplinary healthcare team] ‘progression’. Being told they have SPMS can be just and symptomatic therapies. as big a shock as the initial diagnosis of MS. They can feel they have a completely new disease, Secondary progressive (SPMS) and it’s no longer treatable. But in reality, this is not SPMS is characterised by an initial relapsing-remitting the case. SPMS is just a name for one pattern of disease course followed by progression with or without the disease – it doesn’t change the fact that their occasional relapses, minor remissions and plateaus. symptoms will still be treated and it doesn’t signal a SPMS is called ‘secondary’ because it follows an initially sudden onset of disabling symptoms. They’ve still got relapsing-remitting course. Once the baseline between the same disease, but perhaps very slowly changing.” relapses begins to progressively worsen, the person is – Nicki Ward-Abel, MS Nurse, UK considered to have switched from RRMS to SPMS. SPMS seems to mark a turning point. The disease becomes less ‘inflammatory’, with fewer acute relapses. Relapsing-remitting MS Instead, gradual and irreversible disease progression can occur. There are no reliable laboratory markers or specific tests to differentiate RRMS from SPMS, so the conversion to

SPMS is determined by neurologists based on clinical Disability findings. It has been reported that after five years of having MS, nearly 10 per cent of those with RRMS had reached SP stage. This increased to almost 25 per cent at ten years Time and 75 per cent at 30 years. Men typically reach SPMS around five years earlier than Primary progressive MS women (from the onset of MS), and we know that people who take longer to reach the SP phase also progress more slowly once in that phase. Most of the currently licensed drugs for MS, such as beta-interferon or glatiramer acetate, are not very effective in Disability SPMS. If a person is still experiencing relapses these drugs can help reduce the risk of a future relapse, but they do not appear to have a long-term impact on disease progression, Time although this is under debate.

Secondary progressive MS International research focuses on progressive MS Over the past year, the International Progressive

MS Collaborative, an initiative driven by the Multiple Disability Sclerosis International Federation (MSIF), has been developed to expedite the development of effective disease-modifying and symptom-management Time therapies for progressive forms of MS. The MSIF’s 2012–2016 strategic plan identifies progressive MS as one of the three key priority Progressive-relapsing MS areas for international MS research going forward (along with paediatric MS and stem cells). It has also been identified as a key focus for the MSIF’s global fundraising strategy. We will keep you updated as the work of the Disability Collaborative gains momentum. For the latest information, visit www.msif.org Time

18 intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch 19 Symptom management There are a number of effective drugs to manage the symptoms of MS, such as spasticity, bladder issues or pain. These drugs can be just as effective in SPMS as in RRMS. They do not affect disease progression, but they can alleviate troublesome symptoms and enhance quality of life. Short courses of oral or intravenous corticosteroids are also available to accelerate recovery from a relapse if one does occur, but they do not affect the long-term outcome or overall disease progression. Many non-pharmacological approaches can be helpful in SPMS, including the common-sense approach of maintaining a healthy lifestyle, a balanced diet and regular exercise.

Other drugs, such as mitoxantrone (a drug also used apparent. People with benign MS have a minimal amount of to treat some types of cancer), might be suitable for some physical disability after 10 years or more of the disease. people with aggressive SPMS, but again, serious risks, such Clinical predictors of a benign course vary but several as cardiac side effects and leukemia, need to be considered. studies have found that female gender, younger age at onset, Newer drugs, such as natalizumab, are not approved for and less disability early in the disease course, are more use in SPMS. There are a number of other drugs currently predictive of a benign course in the long term. in clinical trials designed to prevent disease progression in Malignant MS, previously referred to as Marburg’s MS, SPMS. These include an oral cannabis extract (which was was first described by Otto Marburg in 1906 and it is, recently reported as ineffective in slowing MS progression – thankfully, very rare. This is an aggressive form of MS that is see p.10); cyclophosphamide (France) and lamotrigine (UK). characterised by rapid accumulation of disability and death For more details and updates, see the clinical trial links listed within a few months to a year of the onset of symptoms. on page 26. This type of MS is poorly responsive to standard MS treatment, although there are some reports of a response to Progressive-relapsing (PRMS) mitoxantrone in individual cases. n PRMS is defined as progressive disease from onset, with clear acute relapses (with or without recovery) with periods between * This article is a compilation of excerpts from MS in Focus, Issue 14, relapses characterised by continuing progression. Although 2009: Disease Courses in MS, by the Multiple Sclerosis International the least common of the sub types, recent clinical trials of Federation (MSIF). For a full copy of this publication, visit progressive MS have provided ample evidence for this form of www.msif.org/docs/MSinFocusIssue14EN.pdf MS. The behaviour of PRMS is similar to that of SPMS.

Clinically isolated syndrome (CIS) Since the publication of the initial four MS sub types, two additional disease courses have been described. Clinically isolated syndrome (CIS) refers to the first episode of inflammatory demyelination that occurs in those who are very likely to eventually be diagnosed as RRMS. Current MS Treatment Choices Study diagnostic rules require the identification of two relapses separated in time and involving different areas of the central Call for research participants nervous system. This research project is exploring how people make decisions about managing their MS. Steroids, usually high doses of intravenous methylprednisolone, are used to treat acute exacerbations Have you thought about other ways to manage that cause new symptoms or worsen existing symptoms, your MS, such as low dose naltrexone, hyperbaric oxygen therapy, vitamin D, bovine colostrum, CCSVI and there is evidence that initiating a DMT at the CIS stage treatment, stem cell treatment or changes in diet? delays both conversion to MS and onset of the progressive phase. Trials are also beginning to test the effects of vitamin D We are looking for people who have thought about in people with CIS. using any of these ways to manage their MS; those who have gone ahead with the therapy; and those who Less clear is what is now being referred to as the decided not to. ‘radiologic isolated syndrome’ (RIS, also referred to recently as CIS type 5). This is applied to individuals who have Participants in this study will be asked to complete a MRI scans for reasons unrelated to MS and are found short questionnaire and a face-to-face interview at a time and location suited to participants. The outcomes to have changes on these scans suggestive of of the study will help us to improve information (asymptomatic) MS. resources and support for people with MS. Extreme forms of MS For more information or to join the study, contact: Some people live with MS for many years without accumulating disability. This group has so-called benign MS, Cathy Milne, Investigator [email protected], 0401 996 913 the reported frequency of which varies between 5–40 per www.mstreatmentchoices.wikispaces.com cent in studies. It is the mildest form of MS that is clinically

18 intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch 19 EVENTS For bookings or more information, email [email protected] or call 1800 042 138

INFORMATION SESSIONS Program is subject to variation. Get in to the Gong Please check when you make a booking. Dates and times of more sessions will be available on our website.

See page 22 for teleconferences and webstreams available to clients in all regions. Learn About MS Led by an MS nurse, this session is suited to those recently diagnosed, and people wanting to meet others and learn more about MS and our services Oct, date and time TBC, NSW (please call 1800 042 138) 24 Nov, 1pm – 4pm, Deakin, ACT

Nurturing the Caregiver/Care-receiver Relationship Our psychology team presents this session about recognising and nurturing relationships between people with MS and their family, friends and carers 31 Oct, time TBC, Lidcombe, NSW

Riders are set to roll out once again along the FAMILY & CARER PROGRAMS iconic 90km course from Sydney to Wollongong Family BBQ on Sunday 4 November. Proudly supported by the Rotary Club of Concord ‘The Gong Ride’ has become one of the MS Australia – ACT/NSW/VIC is celebrating Carers most popular events on Sydney’s sporting Week with a free family barbecue for clients and calendar and, most importantly, it is Australia’s their family members. Enjoy a social and relaxing biggest fundraiser for people living with MS. get-together, meet other families and share your Last year, more than $4.3 million was raised experiences over lunch. Children are welcome. by the 10,000 riders participating in the Gong 20 Oct, time TBC (call 1800 042 138 for details) Ride. MS is a cause close to the heart of many of the participants, who either have the disease or know someone affected by it. Meg McIntyre (pictured in red), and her team MS Port, is one such participant and fundraiser. Over the years, Meg and her team have raised more than $40,000 for MS Australia – ACT/NSW/VIC. Last year, alone, the team raised $6,280. “Since being diagnosed in 2004, the ACT & NSW organisation has helped change my perspective,” says Meg. “I have gained a greater appreciation for life and I just go out and seize the day.” PHYSICAL ACTIVITY GROUPS Why not join fundraisers like Meg? Seize the day on 4 November and support the 2012 Heartmoves for MS; maximising strength Sydney to the Gong MS Bike Ride. Help us reach our target of $4.5 million, and help and flexibility; and aquatic exercise groups provide essential services to people with MS are held throughout the ACT, NSW and and contribute to vital research. Victoria. For exact locations and times call 1800 042 138 or visit the ‘Health & Wellness’ How can you get involved? section on our website at www.mssociety.org. • If you’re unable to ride, why not ask a family au/health-wellness.asp member, friend or colleague to ride on your behalf? You can offer to help set up the team online, rally support and perhaps coordinate some more local fundraising to go towards Calling expressions of interest the team’s total. • Support a team online by making a donation Are you affected by progressive MS? Do you live and/or alert your family, friends and in the NSW Hunter or Lake Macquarie regions? colleagues to such a good cause. Every Would you like to meet others in your area living in cent counts! similar circumstances? If so, our community support • Have you considered volunteering? There’s workers in this region are looking to host a meet and something for everyone. Visit the website for greet for people just like you. information about the opportunities available. Mon 12 Nov, time and venue TBC Call 1800 042 138 to express your interest. For more information, visit www.gongride.org.au

20 intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch 21 For bookings or more information, email [email protected] or call 1800 042 138. EVENTS

INFORMATION SESSIONS PHYSICAL ACTIVITY GROUPS See page 22 for teleconferences and webstreams available to clients in all regions. Heartmoves for MS; maximising strength and flexibility; and aquatic exercise groups are Learn About MS held throughout the ACT, NSW and Victoria. Led by our Medical Director, this session is suited to For exact locations and times telephone those newly diagnosed and people wanting to meet 1800 042 138 or visit the ‘Health & Wellness’ others and learn more about MS and our services section on our website at www.mssociety.org. 15 Sept, 10am – 1pm, Blackburn au/health-wellness.asp

Working with MS Explore your rights and responsibilities at work, VIC as well as superannuation, insurance and 24 HOUR MEGA SWIM financial matters Monash Mega Swim 17 Nov, 10am – 1pm, Blackburn 6–7 Oct Monash University, Clayton Taking Control and Planning Ahead Visit www.megaswim.com Receive advice about enduring powers of attorney, guardianship and administration 26 Sept, 10am – 12pm, Footscray 14 Nov, 10am – 12pm, Blackburn

Get Active with MS Our physiotherapists discuss how fitness and exercise can help manage MS symptoms 24 Oct, 1.30pm – 3.30pm, Coldstream

Managing Fatigue An overview of MS fatigue and how to manage this invisible symptom 11 Oct, 10am – 12pm, Footscray 16 Oct, 10am – 12pm, Shepparton Family camp fun 30 Oct, 12pm – 2pm, Bairnsdale July school holidays in Melbourne can be wet, cold and boring, but not for the 18 families who joined in Thinking and Memory the fun at this year’s MS Australia – ACT/NSW/VIC Learn about common MS-related thinking and Family Camp from 13 to 15 July. memory changes and how to manage them Held in partnership with the YMCA, 32 adults 25 Sept, time TBC and 40 kids affected by MS, six energetic YMCA Bairnsdale Peer Support Group viewing recorded volunteers and six MS staff were challenged by session the camp’s Giant Swing, explored ‘trying on’ the symptoms of MS, played games, sang songs and toasted marshmallows on the campfire. A donated visit from Animals of Oz and relaxing massages were key highlights for participants who enjoyed a weekend away from the everyday challenges of MS. Alex Sweatman of Wodonga was one of the fathers at this year’s camp. He reflected upon the event by saying, “I had to express my heartfelt appreciation to you all for your wonderful work in supporting people like me with MS. I am sure the general public would be extremely proud to know that a proportion of their generosity has helped several lucky families, like mine, to create precious memories and experience real joy, even just for the weekend at Camp Manyung, Mt Eliza. Medication Update “It was incredibly valuable for my family to get MS nurses will discuss the new and emerging together and spend some quality time with others medications available in Australia affected by MS. For the first time, my wife and 20 Nov, 6pm – 8pm, Footscray kids were able to see first-hand how the disease can progress and the program gave them an Live Well with MS opportunity to talk about how they felt. If I am Explore the lifestyle factors that contribute to living well unable to halt the progression of my disease, my with a chronic illness family are now better equipped to deal with this. 1 Nov, 6pm – 8pm, Footscray “Please keep up the great work. I hope to be back fundraising again in the not-too-distant future. Psychoneuroimmunology and MS After this experience, I have some great ammunition Find out more about PNI in relation to MS for those who are doubtful about donating.”

thinkstock/iStockphoto/Jupiterimages/Getty Images 17 Oct, 1pm – 3pm, Blackburn

20 intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch 21 EVENTS These sessions are available to clients and their family members across all regions

TELECONFERENCES Continence Care in MS Learn about bladder and bowel problems – causes, To register for a teleconference, assessment and treatment options please call 1800 042 138 25 Sept, 7pm – 8.30pm 23 Oct, 7pm – 8.30pm Learn About MS 27 Nov, 10.30am – 12pm Suited to those recently diagnosed. Ask questions and learn more about MS and our services Working with MS (NSW & ACT only) Dates TBC, please call 1800 042 138 Explore your rights and responsibilities at work, as well as superannuation, insurance and Get Active with MS financial matters Our physiotherapists discuss how fitness and exercise Date TBC, 7pm – 8.30pm (call 1800 042 138 can help manage MS symptoms for details) 4 Oct, 10.30am – 12pm Carers Telephone Support Group (NSW & ACT only) Managing Fatigue Suited to those who care for someone with MS in any Learn how to manage MS-related fatigue, with this capacity. Meet others, share your situation and provide two-part teleconference series mutual support 31 Oct and 14 Nov, 6.30pm – 8pm First Wednesday of every month, 1pm – 2.30pm

WEBSTREAMS Due to some technical difficulties with our webstreaming, many information sessions are now recorded and available to download for viewing on your computer, rather than via webstream.

To find out what is available and to access these recorded sessions, please contact Andrea Salmon via MS Connect on 1800 042 138 or

ALL REGIONS email [email protected]

Introducing your local Planned Giving Officers This year has seen the introduction of the Planned Giving Team within MS Australia – ACT/NSW/VIC. This small but very important team consists of two Planned Giving Officers: Donna Bradley in Victoria and Donna Bradley is Jacqui Sumner Jacqui Sumner in the ACT/ available to help in provides support NSW region. Victoria. in ACT/NSW. The Planned Giving Team facilitate the her young daughter, and has also which can be used as a guide when Bequests/Planned Giving program worked with a non-government considering your options. They can for MS Australia in the ACT, NSW and organisation helping street children in also provide you with ‘In Memorium’ Victorian regions. Kampala, Uganda. envelopes if you wish to remember Donna has been with MS Australia and honour a loved one by leaving a – ACT/NSW/VIC since November How can your Planned Giving gift in lieu of flowers. 2011. Prior to this Donna worked Officers help you? with Victoria Police. Her part-time Donna or Jacqui can assist those Contact us role as Planned Giving Officer is a who would like to find out more about If you have any questions, or would like great new challenge, which Donna leaving a bequest to MS Australia to obtain any bequest material, please also finds very rewarding. She is – ACT/NSW/VIC in their will, or on contact either Donna or Jacqui on looking forward to her belated establishing a power of attorney or FreecallTM 1800 443 867 or email: honeymoon in October. guardianship. They are happy to ACT/NSW: Jacqui joined the organisation, discuss these issues with you and [email protected] part-time, in April 2012. Prior to provide you with a copy of our booklet Victoria: this, Jacqui was busy looking after entitled Your Future in Your Hands [email protected] Thinkstock/George Doyle

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MS Australia – ACT/NSW/VIC carer events CARERS No matter what level of care you provide, our organisation recognises the diverse and vital role you play in supporting a person living with MS. We are joining in the celebrations by holding the following events across our regions. For more information and bookings, call 1800 042 138.

ACT: Carers Morning Tea Celebrating Carers Week: 14–20 October Thurs 18 Oct, 10am, Gloria McKerrow House, Deakin NSW: Carers Week is a time to celebrate and acknowledge the MS Family Barbecue vital role the 2.6 million carers* play in Australian society. Sat 20 Oct, Sydney location TBC Individuals can come into their caring role at any stage – Information session: Nurturing the care-giver/ age, culture and gender are no barrier. Carers provide help care-receiver relationship and support to family members, relatives or friends with a Wed 31 Oct, time TBC, Studdy MS Centre, Lidcombe disability, mental illness or disorder, terminal illness, chronic condition or those who are frail aged. Victoria (in partnership with Brainlink): ‘Care’ can come in many forms. Some people who provide Carer Barbecue and Walk love, support and assistance when needed, may not even Mon 15 Oct, 11am, starts at Jell’s Park, Wheelers Hill, identify themselves as carers. However, their role is crucial. Melbourne (bookings essential) Organised by Carers Australia, Carers Week is an Pamper Afloat for Carers opportunity for carers to come together, support one another Fri 19 Oct, 11am, Yarra River Cruise, leaving from and share ideas and information. Many activities are taking Docklands (bookings essential) place throughout Australia, most of which are free of charge, In partnership with Brainlink, we also have a limited number and some even provide respite. For local events happening of free Palace Cinema movie vouchers available for carers near you, visit www.carersaustralia.com.au n (Northcote, Brighton, City, Balwyn, South Yarra only). * Source: www.carersaustralia.com.au

Introducing the Carers Working Party The MS Australia – ACT/NSW/VIC Carers Working Party (CWP) was formed in 2008 with a purpose to provide a consultative forum of consumers (carers/family members of people with MS) and MS Australia – ACT/NSW/VIC staff. The CWP works together on various projects related to carers and family matters across our organisation, with representation from each state/territory. For example, the CWP plays a significant role in identifying carer education programs and events, contributing to carer-related publications and resources, and, more recently, the CWP has been involved in the establishment of the MS carers Facebook groups. The CWP meet bi-monthly to identify, develop and provide strategic direction and advice on various carers’ matters across the organisation. The current CWP representatives are Brenda Fisher, Carer Peer Support Volunteer and MS Ambassador; Erin O’Loughlin, Carer Peer Support Volunteer; Angela Geltch, MS Community Support Worker; and Gayle Homann, Peer Support Program Leader. There are currently two vacancies on the working party in NSW and ACT for volunteer representatives. For more information about these roles, or to contribute your ideas and feedback to the CWP, please call MS Connect on 1800 042 138. n

Facebook group now online New carers online community The MS Australia – ACT/NSW/VIC Carers The Victorian government-funded mc2 online community, which Facebook group is up and running. Visit the hosted the MS Australia – ACT/NSW/VIC Carers Peer Support following link to request to join the group: Community, closed down at the end of June. In place of this, www.facebook.com/groups/413493135353497/ our web team and the State Library of Victoria are working As featured in the Winter edition of Intouch collaboratively on a new and improved online community called (p.24), the Young Carers Facebook group has My MS Community. The new community will have the same also been established. Go to www.facebook. discussion forum and chat features of mc2, as well as additional com/#!/groups/359936620704868/ and request components such as blogs, news feeds and more. Visit to join. http://mymscomm.newcms.vicnet.net.au

Thinkstock/iStockphoto *Source: www.carersaustralia.com.au

PB intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch 23 EMERGING TREATMENTS series: PART OnE MS treatments – a timeline Part one in our Emerging Treatments Series traces the history of the various MS treatments we know of today. Over the years, life has steadily improved for people outlook is significantly more positive. Below is a snapshot with MS. In 1890, when MS was treated with herbs and of how and when MS treatments have emerged. bed rest, life expectancy was five years. By 1970, when Throughout the next few issues of Intouch, we will steroids were more commonly used, life expectancy was look at the evolution, current status and future direction about 32 years from the time of diagnosis. Today, with of specific MS treatments. For example, emerging an array of medications, access to good information oral treatments, stem cell therapies, and other and greatly improved care from health professionals, the non-pharmacological remedies.

1868 1947 1960s First correlation of MS clinical First study conducted into The US National MS Society funded a panel of symptoms with central nervous the immunology of MS – the experts to draw up standard guidelines for MS system (CNS) pathology; disease relationship between the diagnosis. This helped doctors to make earlier, named ‘Sclerose en plaques’ by body’s immune system and more accurate diagnoses and allowed for more Jean-Martin Charcot. the impact of MS on the CNS. reliable research.

Charcot’s treatments included electrical stimulation; strychnine (a 1969 poison that is a nerve stimulant); and injections of gold chloride, First successful clinical trial of a sulphate and silver nitrate, which 1950s treatment for MS – the steroid had been somewhat helpful in Immune system becomes ACTH. This intramuscular steroid other nerve disorders. an object of intense scientific therapy would give way to the study; however, treating modern steroid therapy used today doctors continued to suspect for acute attacks. impaired blood flow. Circulation 1886 stimulators dominated MS first documented treatment (without controlled Late 1970s studies to track results). in Australia by Steroids to suppress immune Dr James Jamieson. activity were now widely used to treat MS attacks. 1956 First bone marrow Small studies performed using transplant (not for substances that modulate the immune MS) performed in system, such as interferons and a 1930s the US. synthetic protein, glatiramer acetate (now manufactured as Copaxone). Doctors wondered if MS was caused by circulation problems. They tried therapies to stimulate blood 1978 flow (e.g. blood thinners and MS diagnosis improved drugs to dilate blood vessels). with use of computed axial X-rays also used to treat tomography (CAT) scans – MS, although scientifically computer-processed x-rays unproven. to produce tomographic images or ‘slices’ of specific areas of the body – as well as ‘evoked potentials’ tests, which measure nerve conduction.

Stem cells discovered in human cord blood.

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Did you know? The development of new treatments is a long and difficult process. Fewer than one or two compounds in 10,000 tested actually make it through to being licensed treatments. A potential new medicine may be rejected at any point in the development process on safety, efficacy or quality grounds. On average, it will take 10–15 years for a new compound to get from the test tube into the medicine cabinet.

1980s 1985 to mid-90s 2000s The ‘Treatment Clinical research gains A variety of clinical trials begin momentum in all areas to explore the potential for stem Decade’ in MS of rehabilitation in the cell therapy to prevent immune This decade saw an explosion of treatment and management damage to the nervous system; clinical trials. Guided by the (US) of MS symptoms – exercise repair damage; and identify new MS National MS Society, scientists therapy, occupational treatments. reached a consensus on the therapy, speech pathology, design and conduct of clinical psychology and research for new treatments. neuropscyhology, nutrition, The use of haematopoietic stem Emphasis shifted towards nursing etc. cells (adult stem cells taken from attempts to control or cure the bone marrow and blood, already underlying MS. used to treat several blood disorders) is the first experimental treatment Major clinical trials conducted 1993 used for people with MS with highly during this decade led to Interferon beta 1b (Betaferon active forms of RRMS who do not approvals of the first drugs – injectable immunotherapy) respond to available therapies. The shown to affect the course of approved in the US (and procedure is unproven and highly the disease. subsequently in Australia) risky with phase I, II & III trials currently to reduce severity and underway to assess its effectiveness. Psychosocial, mental health frequency of MS attacks. issues and the cognitive changes caused by MS began receiving research attention. 2000 1996 CAT scanning was surpassed Mitoxantrone (a chemotherapy Interferon beta 1a (Avonex by magnetic resonance imaging drug) approved in the US (and – injectable immunotherapy) (MRI), which showed the brain subsequently in Australia) was approved in the in greater detail. By 1988, to reduce disability and the US (and subsequently sequential MRI scans proved number of relapses in people in Australia) to slow the that MS is a dynamic disease. with secondary-progressive or development of disability progressive-relapsing disease. and reduce severity and frequency of MS attacks. 1982 A pilot study in Britain found 2001 there may be benefits to 1997 The World Health Organization hyperbaric oxygen therapy (WHO) developed an Glatiramer acetate for people with MS. International Classification of (Copaxone – injectable (Following numerous clinical Functioning, Disability and immunotherapy) was trials, continued research Health (ICF) which defines approved in the US (and into this treatment was a common language for subsequently in Australia) for deemed no longer viable.) describing the impact of disease treating relapsing-remitting at different levels. MS (RRMS). 1983 2002 First report of temporary control of chronic Interferon beta 1a (Rebif – progressive MS with the injectable immunotherapy) immunosuppressive drug, approved in the US (and cyclophosphamide (widely subsequently in Australia) disputed throughout decade). for the treatment of RRMS.

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2010 An international consensus on the future of stem cell transplant Clinical trials research for people with MS is published, paving the way for To find the latest information on clinical trials currently more coordinated global research efforts. underway, visit: The Multiple Sclerosis International Stem Cell Transplant Trial • www.clinicaltrials.gov – maintained by approved by the US FDA – a randomised trial using autologous the US National Institute’s of Health. See page 39 stem cell transplants (from the individual’s own bone marrow) for for more details about this website. autoimmune disorders, such as MS. • www.anzctr.org.au – the Australian and New Research activity builds around CCSVI. Larger international Zealand Clinical Trials Registry studies explore the prevalence of cerebral venous obstruction in • www.mstrials.org.au – the MS Research Australia people with MS. Variable results are found with less conclusive Clinical Trials Network findings than the initial study in 2009. • www.mstrust.org uk/research/ Fampridine SR (Fampyra) – a potassium channel blocker that drugsindevelopment/ – a section of the enhances conduction in damaged nerves – is approved in the UK MS Trust website that explains the latest US (and subsequently in Australia) to improve walking in patients ‘pharmacological’ treatments in development. with MS – the first symptomatic MS therapy. Treatments are divided into three tables; one for Cladribine tablets (Movectro) approved for treatment of RRMS each type of MS. – first oral disease-modifying drug approved for use in Australia. (Subsequently withdrawn by the manufacturer in 2011). 2006 2011 Natalizumab (Tysabri – immunotherapy infusion) approved internationally (and subsequently in Fingolimod (Gilenya) – oral disease-modifying drug Australia in 2009) to treat patients with severe cases approved in Australia to treat RRMS. of RRMS. Two treatments used for people with MS found to have CCSVI: Catheterisation of blocked veins and 2008 stenting the blocked vein. Effectiveness and benefit versus risk is yet to be established for treating MS. The WHO and the MS International Federation present evidence on the global epidemiology of MS and the resources to diagnose, treat, 2012 rehabilitate, support and provide services to people with MS. Atlas-MS summarises A variety of phase I, II and III clinical trials continue to information from 112 countries, representing explore the potential for stem cell therapy in MS. 88% of the global population. Numerous international studies continue to explore if vein abnormalities (i.e. the CCSVI theory) are linked to MS.

2009 A number of oral medications and infusions are currently Results from a small study showed a correlation in phase II and III trials, internationally. between having MS and signs of cerebral venous insufficiency (reduced blood flow). The Research continues into the treatment of MS symptoms research team called this ‘chronic cerebrospinal (e.g. Australian researchers discover botulinum toxin (botox) venous insufficiency’ (CCSVI). helps treat tremor and shakes in people with MS). A further study looked at the effects of treatment to re-open blocked veins. Some Possible avenues for treatment and regeneration continue positive results were reported but further studies to emerge (e.g. Australian scientists discover blocking were needed with larger groups. a specific protein may act as a ‘hand brake’ to the progression of disease in an experimental model of MS). Researchers from the Australia and New Zealand MS Genetics Consortium (ANZgene) World-first vitamin D clinical trial for prevention of MS discover important links between genetic and (PrevANZ) begins. environmental factors in MS. Exciting areas of exploration include laboratory studies Research into the possible connection between on remyelination as well as the possibility of, one day, vitamin D deficiency and MS escalates. stimulating recovery from existing damage. Checking vitamin D levels and supplementation becomes commonplace for people with MS. * This article has been reviewed by Dr Elizabeth McDonald, MS Australia – ACT/NSW/VIC Medical Director; and Lisa Melton, Research Development Manager, MS Research Australia.

* This is an international timeline. References available upon request.

26 intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch PB MS COMMUNITY

Lynda and her trusty wheels Communities support on the gruelling the MS cause desert ride. We’d like to thank the many who take the time to raise funds to support those living with MS. Here is how some people have rallied together to help make a difference.

Let’s Go Greek George Manettas, his family and an enthusiastic fundraising committee went all out in May to stage a successful fundraising dinner, with a Determination in the desert fun and festive theme – Let’s Go Greek! Held at Nick’s Bar and Grill in What would motivate you to ride 675 Sydney’s King Street Wharf, more than kilometres across the desert in six 500 people attended the event to enjoy days? Love and determination! great food and entertainment, and to Lynda Jones’ father has MS, support the MS cause, which is close which affects his ability to walk. His MS Ambassador determination to live a fulfilling life to the family’s heart. Stephen (left) and actor George Kapiniaris at inspired a loving daughter to turn MS Ambassador Stephen the dinner. Papadopoulos shared his own a newfound cycling hobby into an experience of living with MS. The and silent auctions. A phenomenal adventurous six-day trek across audience were touched by his story $137,638 was raised on the night! some of the most unforgiving, yet and appreciated learning more about We would like to thank George and breathtaking, Australian terrain. MS and its impact. all involved for their commitment and Lynda’s objective was to ride Guests showed great generosity, generosity in staging such a successful from Tennant Creek to Darwin, supporting the MS cause by and stylish event that will help make a raising money to purchase as many participating in raffles, as well as live significant difference. n specialised wheelchairs as possible – something her father will one day need. Lynda achieved her objective. Fishing for a cure “I have now well and truly got the bike-riding bug, and I can’t wait for Jindabyne in south-west NSW played the next one,” she reports. host to the Rapala / Discovery Holiday Achieving this personal goal saw Parks Family Fishing Competition in May. Lynda raise more than $5,000 for While participants were out to claim the MS Australia – ACT/NSW/VIC. Thank biggest catch, there was another cause you Lynda! n on the agenda as well – MS. Following a successful first day of Get involved competition, 70 people gathered for the evening To become a community barbecue, which featured a silent auction to raise fundraiser, contact: funds for MS Australia – ACT/NSW/VIC. Local father and keen fisherman Matt McCann spoke of his connection to MS ACT: Mirimba Kovner, and enlightened the group on how they could further help support young (02) 6234 7030, [email protected] people with the disease. Local Steve Williamson from Steve Williamson’s Fishing Adventures NSW: Kerry Hill, (02) 8299 0134, organised the fundraiser, which raised a total $2,465 thanks to many [email protected] generous donations from businesses and individuals. A big thank you must be extended to Steve and all involved who helped Victoria: Gill DeCis (03) 9845 2880, support people living with MS. [email protected]

PB intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch 27 MS COMMUNITY

Roll of Honour Volunteers We would like to thank the following community in action members who helped raise funds for MS over the past Meet some of our inspiring three months: volunteers who are helping

l Allana Bryan – MS Ball to make a difference.

l Amanda Hall, Fleur Williamson and Team Weir – 1 Million Kilos, A special visitor Channel 10 In March this year, Belinda decided l Amy Morrell, Angela Gilpin, she’d like to be involved in volunteer Ashlee Williams, Basel Dabbagh, work. “I wanted to interact with Belinda says there are Carolyn Burns, Chris Hube, benefits for everyone someone on a one-on-one basis so in volunteering. Christopher Browne, David that I felt like I was making a tangible Grossman, Fiona Burgemeister, difference to an individual,” says the also nice to just chat about life in Frances St Ruth, Julie McIntyre, 35-year-old site administrator, who general. I think spending time with Lisa Fitzmaurice, Louise lives with her husband in Flynn, ACT. different people is a great way to Barbera, Mark Henderson, Belinda was also aware of how ‘out of expand your horizons so we both Menik Wijekoon, Michael Lynch, place’ non-elderly residents can feel in benefit on that front.” Natalia Chamorro, Olivia Roles, an aged care facility. “I thought I might Seeing how delighted the client is Paul McLeod, Peter Svozil, be able to provide conversation and when she visits is the best thing about Robert Bartucca – The Age Run interaction in an environment being a social support volunteer, says Melbourne that can, at times, be isolating for Belinda. “It’s great to feel as though l Angela Xenos – Run City certain people.” you’re having a positive impact Through the MS Australia – ACT/ on someone’s life, no matter how l Auburn City Council – Golf Day NSW/VIC volunteer program, Belinda small it may seem. I would certainly l Donna and Phil Robinson – now provides social support once recommend volunteering because, wedding day donation tin a week to a lovely lady in her sixties in reality, it’s a very small investment l Emily Brady – trivia night who resides at a local aged care of your own time that can improve facility, due to the effects of MS on someone else’s quality of life.” l Fleur Van Den Berg – running HERMANNSBURG her mobility. Aside from occasional outings in an electric wheelchair l Geoff Allen – barbecue breakfast operated by another person, the client l Giovanni Mauro – G’s Mission for is primarily restricted to a bed. It’s great to feel as MS Cure Belinda explains that the pair do though you’re having many things together. A big project l Hannah Whitaker – Hannah Runs has involved cataloguing the client’s a positive impact on for MS and Beyond Blue very large DVD collection. “Together someone’s life l Jill and Mike Budden – ‘Wesden’ we’ve categorised every DVD, Open Garden both on a spreadsheet and on the l Ken Mansfield and the Last Leg shelving unit – it’s more organised Becoming a volunteer has also Team (7 senior veterans) – ride than a video store!” given Belinda a genuine admiration from Townsville to Katherine Belinda also spends time running for anyone living with a disability. “In through the client’s diary so she the case of the client I visit, despite l Matthew Driscoll and Sanja knows about upcoming appointments her physical restrictions, she is a very Djekic – SMH half marathon or outings to a concert or a ballet bright and animated person with l Sharee Richardson – performance, which are highlights in a positive attitude and a genuine morning tea her social calendar. interest in people, events and society l Tori Gorman – swimming the Belinda believes there are benefits in general. It reminds me that we, as English Channel for everyone in volunteering. “I enjoy healthy, able-bodied individuals, can being of practical assistance but it’s take things for granted.” n

28 intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch 29 Volunteer opportunities We are always looking for more volunteers and here are some The art of giving opportunities we’re aiming to fill Caroline with “I was diagnosed with MS in 1995. I student Robert and right now. his Fred Williams- was 35 at the time but looking back I inspired artwork. ACT may have had MS since I was 24,” says l A volunteer is required to Caroline, who retired from her job as even those who feel their level of ability drive a client weekly or an architect seven years ago to reduce is an issue. “Carers are available to fortnightly to the gym. The stress and concentrate on her art. help those who need it. In fact, it has volunteer will need to be able Caroline wanted to help others with become a bit of a family affair. My to pack the client’s wheelchair MS, so when she saw an ad in Intouch mother, who is a practising solicitor, into their car. for a volunteer to give art classes at attends as a volunteer to help those l A mature volunteer is required the Studdy MS Centre in Lidcombe, with difficulties to hold their brushes to visit a lady who has MS she thought it would be perfect. “I love and put the paints out. At home, my in her home. She’d enjoy to paint and draw, and I wanted to husband prints out all the images I need outings to the shops, as well communicate to others that art can for the class and my son is always keen as craft activities. inspire them in their lives. to see the students’ artwork.” “At each lesson we explore an Caroline is amazed at what her NSW artist’s life and works, and I explain students create. “They’re very receptive l The upcoming MS Gong Ride how they use colour, line, texture and to ideas. They enjoy learning about requires 450 volunteers for a composition,” explains the mother of different artists and applying themselves variety of roles, which span two, who volunteers once a fortnight. to see what they are artistically the entire 90km course from “The students then produce an artwork capable of. Ultimately, the goal is to do Sydney to Wollongong. Visit inspired by that artist.” something challenging, have fun and www.gongride.org.au for more Those who attend the class are feel a sense of accomplishment. I also information and to apply. residents or respite clients. Caroline enjoy discussing our MS and finding out l Social support volunteers encourages everyone to give it a go, a little about their lives.” n are required at the Studdy MS Centre, Lidcombe to run Benevolent bloke from Bendigo activities for clients and Chris enjoys Chris reveals he didn’t get the go on outings. Drivers being able to sense of fulfilment he was after when ‘give back’ licence beneficial. in his local volunteering for various organisations l A social support volunteer who community. in the past. Being at the shop, can sew is required at Lidcombe however, has been different. “Knowing for a half day each week. I am helping in a practical way is very l Gardening volunteers are important. I like to see an outcome. required at the Studdy MS I am now quite enthusiastic about Centre, Lidcombe. going to the shop each week. The l A male volunteer is needed camaraderie is great and the people are to provide social support to a Chris, a volunteer in one of our newest fantastic. As you get to know them, you client at Regents Park. MS Shops, has lived in Bendigo all get to discuss your own life situation, his life. “My family came here from which I quite enjoy. Victoria Germany in the 1850s and set up a “Family is important to me,” explains l Fit and active volunteers are business. I still have my 95-year-old Chris, who admits to spending a lot needed to deliver MS shop mother here and my wife Kaye is also of time doing things for his kids and flyers in the areas of Malvern, a Bendigo girl. It’s a great place to live checking in on his mother. “To me, the Armadale and Bendigo. and raise a family,” he says. shop is kind of an extended family.” l Volunteers are required to Chris was previously employed as Chris says he would definitely assist at MS Community manager of the audiovisual department recommend volunteering for many Shops in Malvern, Melton, at La Trobe University for 36 years reasons. “I’ve been very blessed in my Daylesford and Fairfield. before taking a redundancy. “My life. I’m just trying to give back a little, wife saw an ad in the paper calling and it’s been great to do that in my for volunteers to work in the MS hometown of Bendigo. Volunteering If you’re interested in these or any other volunteer role Community Shop in Strath Village, so I gives you the opportunity to meet across our regions, please call rang the Volunteer Coordinator. others and understand their reasons for MS Connect on 1800 042 138. I now volunteer at the shop every volunteering. Overall, there’s satisfaction Tuesday morning from nine to one.” in saying, ‘I’ve done that’.” n

28 intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch 29 MS COMMUNITY “I am there to provide a friendly ear” Three years ago, I was volunteering at MS Australia – ACT/NSW/VIC in Canberra when I got an email about Peer Support Volunteer the Peer Support Program. Instantly, I knew it was Toni is keen to use her own experience to something I wanted to do. Since joining the program, support others. I have been able to apply much of my personal experience to help others. I find it therapeutic to talk about what I have been through and to know I have helped someone. Although my MS diagnosis was a long process, I chose not to let anyone know what I was going through until I was officially diagnosed in 2000. I was suffering from information overload because I was pregnant at the time and my eldest son was going through the process of being diagnosed with autism/Asperger’s syndrome. Looking back now, I know I should have been focusing on myself and my Sharing the own health. I wish I had spoken to someone who understood what I was going through. That is why peer support can be so beneficial. A Peer Support journey Volunteer is someone you can feel safe talking to who is not going to be judgmental or give critical advice. Like many, Toni experienced a complex and I recently attended a training day for existing Peer difficult MS diagnosis. Now she is keen to Support Volunteers, which was an update on the support others through their MS journey. initial training I undertook when I joined the program. As well as recapping on skills and how to manage Toni, a psychologist by profession, was diagnosed with MS certain situations, the training reminded me that, as three years ago. “I was driven [to help others] by the fact a Peer Support Volunteer, I need to be aware of my that I was treated unfairly and alienated once I revealed my own wellbeing too. diagnosis to my employer,” she explains. “I felt it important to I now try not to get too involved in what other 2012 0930 CAPS Card Globes 140H X210W OL.pdf 1 06/08/2012 10:08:11 AM be part of a supportive group of people who provide a safe, people may be feeling or saying, which can caring and understanding environment to those in similar sometimes happen. As a Peer Support Volunteer, I circumstances.” am there to provide a friendly ear. Wanting to assist others with MS (and their carers) to I think it’s also important for people to know that increase their awareness of MS and access information, the Peer Support Program is not only for the newly support and resources, Toni has been involved in diagnosed. It is also for family members and carers, establishing the Kyneton Peer Support Group. “We are and is available to those who would like to reconnect learning that many members have continued to live very with others and talk about their experiences at any successful and rewarding lives after receiving a diagnosis. stage of their MS journey. n These group members are certainly a wealth of information – Maria and an inspiration to us all,” she reveals. The members of the Kyneton group have different experiences, skills and knowledge to share. For example, C the group maintains a ‘Handy Hints Log’ which is updated at M each meeting and contains information learned and shared by group members that may be of benefit to others. Y “In essence, our group focuses on positivity and CM empowerment and is a great example of ‘the whole being MY greater than the sum of its parts’. I recommend the Peer CY

Support Program because it can be tailored to meet the CMY needs of the individual, and I believe engaging in K positive social interaction is valuable in attaining optimal health and wellness.” n

For more information about the Peer Support Program or to find a support group near you, please contact MS Connect on 1800 042 138. Michael Davson / www.mickdavsonphotography.com

30 intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch 31 Support group profile

Louise-Anne, co-facilitator of the We also have guest speakers come to talk to us. For Shepparton MS Support Group, encourages example, Vanita Dahia, a naturopath and pharmacist has others to join a group which actively presented to the group, and this month we have Wealthcare empowers its members through education coming to discuss entitlements and financial management. and information sharing. Our annual World MS Day Barbecue is a big one on our calendar. Held on the last Saturday in May at Victoria Lake, Why was the group established and how did you this year marked our third barbecue. We invite people with become involved? MS and their carers from all over the Hume Region. It’s a day Two people with MS in the area were keen to do more than for making connections with others, and is an opportunity just meet for a chat over coffee so they established the for those who work to attend. It’s about catching up, and Shepparton MS Support Group in 2007. I first got involved swapping information and resources, which is important in in 2008 when I travelled from Euroa, Victoria (55km away) rural areas. We had over 50 people attend this year (pictured to attend an MS Expo they held. I am now a co-facilitator, above), so it was a very positive experience. treasurer and secretary of the group. Do you have any advice for people considering joining What does the group do together? a support group? We meet once a month and it could be anywhere because Have the courage to join a group, because other members we are an active group. Most recently, we went to the will be experiencing similar things. When you have those days Shepparton Arts Museum for an exhibition tour and lunch, when you are feeling a little crazy, they will understand and and we are planning a trip to the Otways to do the high tree support you. We believe education is power and a support 2012walk 0930 and CAPS Cardzipline Globes tour 140H X210Wlater OL.pdfthis year. 1 06/08/2012 10:08:11 AM group can empower you. n

CMY

K Michael Davson / www.mickdavsonphotography.com

30 intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch 31 HEALTH+WELLNESS

Take theplunge Aquatic exercise can benefit people of all abilities and fitness levels.

Exercise is not only good for overall health and wellbeing, These properites, outlined below, are considered when it can also help people recover effectively from injury designing an aquatic exercise program to suit the needs of and ailments. Having a suitable environment in which to most people with MS. exercise can make a real difference to people living with MS, which is why aquatic exercise (exercising in water) is l Buoyancy. The water environment suits many people often recommended. because water reduces the effects of gravity. When Water provides an optimal environment for exercise, standing on land, gravity pulls your body towards the especially for those who face challenges with land-based ground, while water helps push the body up, making exercise. “Many activities people may find difficult, painful, you feel lighter and making it easier for you to move or even impossible to carry out on land are more likely your arms and legs. This is known as buoyancy. It helps to be possible in water,” says Tracy Martinuz, MS Australia reduce the force and impact on your joints, can relieve – ACT/NSW/VIC exercise therapist. “This applies to all aches and pains, and can help with balance. people but it is especially true for people with injuries or l Hydrostatic pressure. The deeper you are in the water, disabilities. Many people with MS, with various levels of the more pressure the surrounding water exerts on your ability, enjoy participating in this form of exercise. body. This can help to reduce swelling in the arms and “The good thing is, being a strong swimmer is not a legs, which can be a problem for people who spend a pre-requisite to participation,” adds Tracy. “In fact, simply large part of their day in a wheelchair. learning to move, walk or float in the water, even with l Turbulence. This refers to the irregular motion or assistance, can be of benefit.” swirling movement of water. By varying turbulence, the Water holds special properties, making it seem easier level of challenge can be increased or decreased. For

and more achievable to exercise in water than on land. example, performing faster or larger movements in water Thinkstock/Jupiterimages/ Brand X Pictures

32 intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch 33 Benefits of aquatic exercise Aquatic exercise may: l improve strength and flexibility. l improve fitness and energy levels. l reduce pain. Judy lives with MS and has sought l reduce swelling in the arms or legs. great benefit from aquatic exercise over l increase self-esteem, allow you to feel more the past eight years. relaxed, and provide socialisation and fun. When did you begin taking part in aquatic exercise? I started doing the Sutherland Water Exercise and increases intensity, whereas using a floatation aid (e.g. Aquatic Therapy (SWEAT) program at Waverley Aquatic a pool noodle) helps decrease it. Turbulence can be Centre, Melbourne, about eight years ago. The program useful for practising exercises designed to improve your was founded by Georgina Sutherland who conducted balance, as it is easier to ‘catch yourself’ from falling in research into the benefits of exercise, including aquatic water than it is on land. exercise, for people with MS in the 90s. I now do the l Resistance. Water is denser than air and provides SWEAT program once a week and other aquatic exercise greater resistance to movement. Moving your arms and at least twice a week. legs against resistance is similar to lifting weights. For example, exercises can be made more challenging by Who can take part in the program? holding paddles or other water devices to increase the I happen to be the only one in a wheelchair. Every person level of resistance. This can help to strengthen muscles doing the program has different MS-related issues but we and can be easily modified to suit people with various have all benefited from aquatic exercise. levels of ability in terms of fitness and mobility. How have things changed for you since you started The warmth of the water can also make exercising easier the program? for people who experience symptoms of muscle tightness MS has affected my mobility from the waist down. I am or weakness. wheelchair-bound and have limited movement in my arms and legs. Before I began the SWEAT program, I could Guidelines for joining an aquatic only lean against the pool wall and do arm exercises. exercise program Now I walk from the wall, across two swim lanes, and 1. Get medical clearance to ensure it is safe for you to back. I can do that 20 times in an hour lesson. I can’t exercise in a pool. Inform your physiotherapist or water walk on land but I am more capable of standing up and instructor about medical and physical conditions that transferring from my wheelchair, into bed, the car, and the could be affected by the heat or pressure of the water. toilet. Before I did the aquatic exercise, I needed help to 2. Ensure accessibility is not an issue at the pool you do these things. would like to attend. Some pools even have hoists to I now use a wheelchair without an arm rest, which help you in and out of the water. A physiotherapist can means I don’t need to lever myself up as much and assess your current fitness and level of ability, and refer shows how much independence I now have compared you to a suitable aquatic exercise program. to before. I am not saying people should expect a 3. Choose a pool heated between 25 and 35 degrees miracle; it took me more than six months to move from Celsius. Cooler pools are best for those who are my position against the pool wall, but it did happen. heat-sensitive or for fairly intense exercise. A warm My advice would be, don’t do it for one week and then pool is good for low-intensity or passive exercise give up. (e.g. walking and assisted movements) and spasticity The other benefit to the aquatic exercise is that it’s a (muscle stiffness), which worsens in cooler water. small group and we all have something in common as 4. Limit your time in the water to 20 to 30 minutes, far as the MS is concerned. We have coffee afterwards, initially, to avoid becoming fatigued or overheated, which is really good from a social point of view. I would especially in indoor pools. A rise in core body like to emphasise that to those who may be housebound. temperature can cause symptoms to appear or old They could really benefit from the interaction. symptoms to worsen temporarily. This usually resolves within 24 hours. Let your instructor know if symptom Would you recommend it to others? changes persist. n Absolutely. Based on my experience, it can really help you physically, mentally and socially. If nothing else, it can help For information about SWEAT or aquatic you maintain your level of ability. Plus, if you fall over, the exercise programs available in your region, worst that can happen is that you’ll get wet.

Thinkstock/Jupiterimages/ Brand X Pictures please contact MS Connect on 1800 042 138.

32 intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch 33 HEALTH+WELLNESS Take charge of your health

The Australian Government recently announced a new payment that will assist people who incur high energy costs due to the use of essential medical equipment.

As part of its Household Assistance Package, the Australian Government has announced an Essential Medical Equipment Payment (EMEP). This payment will assist people who have higher than average household energy costs because they use essential medical equipment, or they are medically required to use heating/ cooling to manage their disability or medical condition. Eligible applicants will receive an annual payment of $140 through the EMEP. You may be eligible for this payment if you or the person in your regular care at home: l are covered by a Commonwealth concession card issued by the Department of Human Services or the Department of Veterans’ Affairs. l can provide proof that the specified equipment or heating/cooling is medically required. This proof can be provided as: - certification from a medical practitioner, or - evidence that the essential medical equipment currently qualifies for assistance under one of the state or territory government schemes, or the Department of Veterans’ Affairs Rehabilitation Appliances Program. (This evidence option does not apply to medically required heating/cooling.)

You may also need to prove that you, or the person you care for, contribute to the payment of the home energy account. You can apply for the payment online or by contacting the Department of Human Services on 132 468 to request a claim form. However, the Department recommends people claim online (see website below) as those applications will be assessed sooner. There will be no need to reapply in future years unless your personal circumstances change. To receive this payment, you will also need to be in Australia on the date that you apply for the payment and on the anniversary of this date in subsequent years. n

To download an information booklet about the EMEP or to apply online, visit www.humanservices.gov.au/customer/

services/centrelink/essential-medical-equipment-payment Thinkstock/Buccina Studios

34 intouch spring 2012 www.msaustralia.org.au/actnswvic LIFESTYLE Celebrating artistic talent

‘Blue Wren’ by Justine Martin, Creative pursuits around Whether you’re a Confident Living the regions Program Participant. professional or budding MS Australia – ACT/NSW/VIC artist, or simply appreciate facilitates a number of programs good art and would like for budding artists across to support people with our regions: MS, check out this year’s Art and Craft Group, Gloria upcoming MS Art Exhibition. McKerrow House (ACT) The MultiSkilled Support Group was established in the ACT Now in its seventh year, the MS Art following a series of art classes Exhibition continues to celebrate that kept the group interested in the creativity and talent of the MS meeting regularly for art, craft and community. Over the last two years, to share their MS experiences. our organisation has been refining The group meets fortnightly the exhibition in order to increase the at Gloria McKerrow House in number of viewers and art sales and, Deakin, ACT. Art teacher Maureen importantly, to celebrate the role I can now express how Caelli has MS and she hopes art plays in our lives. This year will be to impart her knowledge to the no exception! I feel through paint – group through another six-week The Exhibition will be held from how extraordinary program later in the year. 17 to 19 October, with the Gala night on 18 October (5.30pm to 8.30pm) Art classes: Studdy MS revealing the winner of the esteemed Centre, Lidcombe (NSW) Barry Allan Art Prize. Rebecca Lovitt, properly [due to MS symptoms] and Residents and clients staying art curator and program manager was having trouble with my words, I for respite at the Studdy MS for Southern Health’s Arts in Health was slowly becoming quieter. [Through Centre in Lidcombe can enjoy a Program will, again, be the judge of this the MS Australia – ACT/NSW/VIC fortnightly art class facilitated by year’s award. According to Rebecca, Confident Living Program] I discovered volunteer, and person with MS, “Research indicates the arts can assist I can paint. I can now express how I Caroline Larcombe. To read more in creating a more relaxing environment feel through paint – how extraordinary about Caroline and the art class where therapeutic benefits are passed and wonderful.” at Lidcombe, go to page 29. onto patients and their families and All artists affected by MS and/ carers. Research demonstrates that or another neurological condition The Confident Living surroundings which contain less stress can exhibit their work in the MS Art Program (Victoria) and divert attention from the health Exhibition. For more information on The Confident Living Program problem at hand contribute to a swifter how to enter by 1 October, please call provides people with MS in recovery and rehabilitation.” staff in our Confident Living Program Victoria with an opportunity to In the words of one of last year’s on (03) 6234 7000, or FreecallTM explore new areas of artistic exhibitors, “I’ve always been creative 1800 042 138 and MS Connect will pursuit, under the guidance of and as I could no longer play the piano transfer your call. n a professional artist in the local community. The Confident Living Program is funded by MS Art Exhibition the Department of Human When: 17 October – 19 October, 9am to 5pm Services, Victoria. 21 October, 1pm to 5pm Where: The Nerve Centre, 54 Railway Rd, Blackburn, Victoria For more information about Cost: Entry is free. Funds raised from the sale of artworks will go to the any of these programs, artist (80 per cent) and MS Australia – ACT/NSW/VIC to assist us in please call MS Connect on continuing to provide essential services to people with MS. 1800 042 138.

www.msaustralia.org.au/actnswvic spring 2012 intouch 35 LIFESTYLE

Spotlight on: CARERS Respite services

Living with MS can be difficult, for both the person with MS as well as their carer/s and family members. Often, taking some time out (respite) can help all involved to feel rejuvenated.

While the word ‘respite’ can be daunting and negative for especially in the summer, are a popular time so it is helpful to some, respite can come in many forms and could be viewed make your arrangements as early as possible. as an opportunity for ‘me time’ – something we all need, While one cannot know when they will need ‘emergency whether there is an illness in the family or not. respite’, it is worth investigating options and knowing how to There are a variety of short-term respite options available access such services ‘before’ the need arises. to people with MS and their carers, including in-home To adequately plan your respite, it’s important that respite, centre-based respite, residential respite, overnight everyone has the correct expectations. It’s a good idea to or weekend respite, carer retreats, holidays, respite for older view a facility prior to a respite stay and/or meet with any carers and emergency respite. It’s worth discussing these in-home carers to ensure they are suited to your needs. options with your MS community support worker, or using the contacts provided in the box on page 38. What respite services does MS Australia – Overall, people with MS and their carer/s should decide ACT/NSW/VIC provide? on the best respite option together. For example: Our organisation has a number of respite services and l Does the carer need assistance in the home for a few programs available to clients and their families, and/or we can hours each week while they head out to run errands or assist you to find a suitable service in your area. catch up on their own physical or social activities? MS Connect and community team staff can assist in l Does the person with MS need time with other sourcing additional products and services to help make like-minded people with MS, and MS services that are respite more enjoyable, and can provide information on closer to a respite facility? disability travel, travel insurance, what to look for when l Does the family need a short break to escape the typical booking a disabled room and contacts for local services. demands of home, work and everyday life? Some financial assistance is also available; however, the services offered can differ between states. When it comes to accessing the relevant service, it is In NSW, the Residential Unit at the Studdy MS Centre in important to think about factors such as the physical and Lidcombe has seven respite places and an additional room cognitive capabilities of the person with MS, the financial may be available for emergency respite. Clients have access costs, the level of care needed, and whether there is to a full recreation program and clients under the age of 65 assistance available. Planning your respite ahead of time can access a maximum of six weeks of respite per year. also allows for more flexibility and choice. School holidays, In Victoria, MS Australia – ACT/NSW/VIC has five rooms available each week of the year across two facilities in Watsonia and Beaumaris. Another six rooms are available on an ‘as-needed’ basis across three facilities in Ocean Grove, Bundoora and Loch. Services and activities vary, as can fees. To adequately plan your Our facilities can book out well in advance, so it’s important to plan ahead and get in early. respite, it’s important that Clients in Victoria can also access short-term in-home respite which can involve home care, personal care or everyone has the correct respite (both taking the client out to give the carer respite/ rest or respite in the home so the carer can go out, attend expectations appointments etc). Timeframes for this service will depend on the client’s circumstances; however, it is not a permanent arrangement.

36 intouch spring 2012 www.msaustralia.org.au/actnswvic LIFESTYLE Name: Helen Burt The additional contacts in the box on page 38 can Age: 54 answer any further questions you may have about respite Occupation: Part-time community services officer and services available to people with MS and/or their family Lives: With her son and a friend in Melbourne, Vic members/carers. Diagnosed with MS: 17 years ago

Flexible respite for families and carers For the first 12 years following her MS diagnosis Helen FlexiRest provides people with MS, their families and unpaid Burt was able to manage her condition without too carers options and choice to help meet their respite much difficulty. Over the past five years, however, MS needs, particularly where these can’t be met by existing has increasingly affected the function of her left leg, community services. requiring her to use a wheelchair. Trouble with her left With funding from the NSW Government, FlexiRest hand and fatigue can also take their toll. provides support for a range of respite solutions ranging While Helen tries to remain as independent as from in-home respite through to support for a short break, possible, a friend who lives with Helen assists her with transport support, services covering regional and remote day-to-day needs, and her son helps out in between areas, and much more. work commitments. Sarah* has been living with MS for almost 15 years. Her When the opportunity arose for her friend to travel husband Peter* and two teenagers support her through overseas to visit family earlier this year, Helen decided the everyday challenges of MS. Ongoing symptoms such to look into respite options. After talking with the MS as fatigue, loss of balance and memory problems make it Australia – ACT/NSW/VIC respite coordinator in difficult for Sarah to work. Living on the disability pension and Victoria, Helen decided on a combination of flexible her husband’s part-time income working for the fire brigade, in-home respite and facility respite for the month her the emotional and financial struggles of life with MS can be friend was away. hard on the whole family. “I had the in-home respite support come in for an hour and a half each day to help me prepare dinner, and some additional support over the weekend to get dressed and so on,” explains Helen. “This made it possible for my friend to go away without me struggling to do everyday things, and it meant he didn’t have to worry about how I would manage. “However, I did think it might be difficult to get through the whole month without the support of someone who lives with me. I took it as an opportunity to try facility respite as well, so I am booked into the Beaumaris facility next week. “I looked into the different options and, given I like to have my own space and I work from home on occasion, the Beaumaris accommodation seemed the right choice as it has single units. This way I am able to maintain my independence while having support close by if I need it. There is a courtyard and plenty of other common areas to interact and meet other people, and it’s a lovely location – 10 minutes from the beach – so I can wander off in my wheelchair down to the beach or go for a coffee.” Helen admits deciding to use facility respite was a big jump. “When you’re used to living in your own space, the idea of going into any facility is difficult. Living in northern NSW, Sarah knows few others close by However, I visited the accommodation prior to booking, with MS and didn’t have access to existing flexible respite met the staff and inspected the environment, which services. When she read about FlexiRest in Intouch, she made me feel a lot more comfortable. As soon as I realised her family may be eligible to apply for the program. could imagine myself in there, it didn’t seem so difficult. “We were going through a bit of a rough patch,” Sarah I definitely recommend that as part of the planning. explains. “MS was taking its toll on everyone. My husband “For me, it’s been great to have two respite options. also cares for his father and the kids do a lot more around the You don’t always want to leave your own home but, house than the average teenager. We just needed to get out on the other hand, going somewhere else is a good of the house and away from everyday life; to give everybody opportunity to take a break. I’m actually looking forward to my stay at Beaumaris. I’m thinking of it as a holiday.”

Thinkstock/Jupiterimages/Pixland/iStockphoto a chance to do things they enjoy and have a break.

www.msaustralia.org.au/actnswvic spring 2012 intouch 37 LIFESTYLE

“We spoke to our MS community support worker, and she helped us apply. As a program aimed at supporting family members and carers, I told my husband he could go away on his own, or with the kids, but we’re pretty close and we like to do things together. “FlexiRest has given us the opportunity to do things we would otherwise be unable to do. In April we took a week- long getaway. We went on a road trip to visit friends and South Eastern Sydney Local Health District ended up in Dubbo where we visited the zoo. It’s something we’d always wanted to do. The funding helped contribute to Multiple Sclerosis Clinic the trip. We came back feeling refreshed and rejuvenated.” “The stress and pressure can really add up,” adds Peter. “We needed to spend quality time together which is often hard when you’re just getting through the day to day. It did all of us good and we appreciate it very much.” FlexiRest operates with funding from the NSW Government. The program is run by a consortium consisting of Muscular Dystrophy NSW, Motor Neurone Disease Association of NSW and MS Australia – ACT/NSW/VIC. FlexiRest is only available to carers of registered clients in NSW. Contact MS Connect on 1800 042 138 for more information about this program, and for relevant programs operating in Victoria and the ACT. n In helping to address the healthcare needs of people with Multiple Sclerosis (MS) living in South Eastern * Names changed for privacy Sydney and Illawarra Local Health Districts, the SESLHD has opened a MS Clinic at Prince of Wales Hospital (POWH).

The MS Clinic is dedicated to the diagnosis and long-term care of patients with MS and related disorders, and utilises the extensive multidisciplinary services available at POWH.

The MS Clinic is run under the direction of A/Prof Arun Krishnan, Consultant Neurologist, Prince of Wales Hospital who has a special interest in Multiple Sclerosis and is currently involved in related research.

Contact details: Institute of Neurological Sciences For more information: Prince of Wales Hospital l MS Connect: Call 1800 042 138 or email Level 2 High Street Entrance [email protected] to access Randwick NSW 2031 MS Australia – ACT/NSW/VIC services and support. l Commonwealth Respite and Carelink Centres: Fax all referrals to A/Prof Arun Krishnan: (02) 9382 2428 A Commonwealth Government initiative to help you find respite care in your local area and answer your For appointments phone: (02) 9382 2414 queries about respite. call 1800 052 222 or visit www.commcarelink.health.gov.au All patients are bulk billed. l Commonwealth Carer Resource Centres: Provides carers with information and advice Low waiting times. about relevant services and entitlements. Phone 1800 242 636. Email: [email protected] l Carers Australia: Provides a wealth of https://www.sesiahs.health.nsw.gov.au/MS/ information on respite and residential care. Visit www.carersaustralia.com.au Once a booking is made, l Your local council can also put you in touch patients will be sent a letter with appointment details. with a number of relevant agencies. Thinkstock/Wavebreak Media Thinkstock/Wavebreak

38 intouch spring 2012 www.msaustralia.org.au/actnswvic WHAT’S NEW: MS-RELATED RESOURCES Check out the latest resources, sourced by the MS Library.

E-Books The MS Library has a small collection of e-books which are available for loan and can be accessed if you have a computer and internet connection. E-books can be read Complementary and Fatigue and MS Clinical Trials on either a computer, Alternative Medicine US National MS Society US National Institutes of Health e-reader or smartphone. Sourcebook Webcasts: Webcast: http://clinicaltrials.gov As with lots of technology, Part 1: www.youtube.com/ By A Sutton, This user-friendly website by not all e-books are Omnigraphics watch?v=zlYpAF-Ch8U Part 2: www.youtube.com/ the US National Institutes compatible with all This comprehensive book watch?v=2v9eXwAnLaE of Health is a search engine e-readers. The e-books provides information for Both parts of this webcast that can be used to locate that we have purchased people interested in trying begin with a variety of people information about clinical are not compatible with complementary and with MS talking about their drug trials. Kindles and some other alternative medicine (CAM), experiences of living with The database contains proprietary e-readers, but either for general wellbeing fatigue and the different information on more than they can be read on the or for specific conditions strategies they use to 125,000 trials from 180 majority of other e-readers (unfortunately MS is not manage this symptom. countries. Each record and on computers, iPads included in the book). The webcasts include provides information about a and many smartphones. It discusses how to select interviews with various health trial’s purpose, who If you would like to a CAM practitioner, talk professionals: A neurologist may participate, locations access our e-book with a primary healthcare discusses the different and phone numbers for collection please contact practitioner about using types of MS fatigue and more details. the MS Library. CAM, and evaluate the association between The site’s background information on the internet. depression and fatigue; an information includes content It also describes individual MS nurse discusses the about how clinical trials therapies such as Ayurveda, nature of MS fatigue, the work and potential benefits traditional Chinese medicine, factors that can contribute and risks; online training acupuncture, homeopathy, to this symptom and the that includes brief animated and naturopathy, and importance of energy tutorials; a ‘Help’ section includes information about conservation techniques; that features useful how-to the safe use of dietary and a physical therapist information about finding supplements. Information provides information about trials; and a glossary of terms on biologically-based the role of physical therapy in related to clinical trials. therapies, mind–body fatigue management. This website also has medicine, manipulative and The importance of a its own helpdesk, a great body-based therapies, and thorough evaluation by feature that lets users submit energy-based therapies is a health professional is an online form asking for also included. stressed and the factors that help if they’re having trouble A glossary of related need to be considered locating information. terms, plus a directory of when treating fatigue are organisations that provide also addressed. CAM are also featured.

To borrow books or for assistance in accessing online resources, please contact the MS Library via MS Connect on 1800 042 138, or email [email protected]

PB intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch 39 15 Swimmers 24 Hours 1 Goal... Supporting people living with MS Save tHe date for upcoming 24 Hour Mega Swims DATE SWIM POOL 2012 Oct 6-7 Monash Monash University - Wellington Rd, Clayton Vic 3800 2013 Feb 25-26 Fitzroy Fitzroy Pool, Alexandra Parade, Fitzroy, Vic 3065 Mar 3-4 Wollongong Aquatic Centre (URAC), Building 13, Northfields Ave, Wollongong NSW, 2522. Mar 16-17 Geelong Leisure Link - Princes Hwy and Pioneer Rd, Waurn Ponds, Vic 3216 Mar 16-17 Leeton Leeton Shire Pool, Palm Ave Leeton, NSW 2705 Mar 23-24 Shepparton Aquamoves, Tom Collins Drive, Shepparton, Vic 3632 Apr 13-14 Melbourne MSAC, Aughtie Drive, Albert Park, Vic 3206 (24 Hour MegaSquash) Apr 13-1 Melbourne MSAC, Aughtie Drive, Albert Park, Vic 3207 May 4-5 Canberra AIS Swimming Pool, Leverrier Cres, Bruce, ACT, 2617 June* Sydney SOPAC, Olympic Boulevard, Sydney Olympic Park, NSW 2127 July* Peninsula Pelican Park Recreation Centre, Hastings Foreshore, Marine Pde Hastings, Vic 3915 July* Casey Casey RACE - 65 Berwick Cranbourne Rd, Cranbourne East, Vic 3977

Dates are correct as at the time of publication and may be subject to change. *Dates yet to be confirmed.

facebook.com/megaswim @megaswim

For details visit www.megaswim.com or call 1300 705 341