Stepping out to Support People with MS
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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. © Multiple Sclerosis Limited 2012 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 Follow us online www.facebook.com/MSAustralia http://twitter.com/MS_Australia www.youtube.com/MSSocietyAustralia Win a European Extravaganza or an Audi A1 Ambition! Win first prize in our next Art Union and you can choose between driving away in a new Audi A1 Ambition, valued at $40,000, or taking a 39-night European Extravaganza tour visiting Scotland, Belgium, Portugal, Italy, Croatia, Hungary, Austria, Czech Republic and Germany. Join Club MS to enter our exclusive draw to win 2oz of GOLD BULLION The odds of winning are brilliant and tickets start from as little as $15.