INTOUCH Spring 2013 The official magazine of MS Australia – ACT/NSW/VIC Editor: Toni Eatts Publisher: Multiple Sclerosis Limited Website: www.msaustralia.org.au/actnswvic ABN: 66 004 942 287 Frequency: Published quarterly in March, June, September, December Advertising enquiries: Tel: (02) 848 1316 Email: [email protected] Design: Byssus Design, (02) 9482 5116 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 NSW The Studdy MS Centre 80 Betty Cuthbert Drive Lidcombe NSW 2141 Tel: (02) 9646 0600 Fax: (02) 9643 1486 Victoria The Nerve Centre 54 Railway Road Blackburn VIC 3130 Tel: (03) 9845 2700 Fax: (03) 9845 2777 MS Connect (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 for legal or medical advice. Multiple Sclerosis Limited is not recommending medical or legal advice and readers must seek their own medical or legal advice as may be appropriate. MS Australia – ACT/NSW/VIC is a not-for-profit organisation that has been supporting and helping people with multiple sclerosis (MS) since 1956. Through an extensive network of centres, branches, support groups and health services, the organisation provides specialist programs to people with MS, their families, carers, friends and healthcare professionals. © Multiple Sclerosis Limited 2013 www.msaustralia.org.au/actnswvic 1 Intouch: Spring 2013 CEO’S MESSAGE Welcome to the Spring 2013 issue of Intouch. First, I’d like to acknowledge the legacy and tremendous contribution made by Jeremy Wright, the founding CEO of MS Research Australia, and to warmly welcome Dr Matthew Miles, previously from the University of NSW School of Medicine, to the role. Matthew is now leading the high level of research activity and the record level of research expenditure. We’re firmly committed to ultimately finding a cure for MS and to eliminating the disease’s impact on the lives of individuals and families. Until that day, we won’t rest; we’ll push ahead. Until then, our organisation will continue to exist to improve lives and eliminate the compromises imposed on them, and we’ll be sharing examples of how the changes are already leading to improvements in people’s lives. A number of important developments have occurred since the last issue of Intouch. In particular, from 1 July 2013, people who have a disability, and their family and carers, have started to move into DisabilityCare Australia (DCA), at four launch sites: the Hunter area of New South Wales, the Barwon area of Victoria, in South Australia for children, and in Tasmania for young people. Importantly, commencing in July 2014, the DCA launch is being extended to Western Australia and the Australian Capital Territory. Our organisation has two launch sites that are demanding our attention, and we’re also not only maintaining our existing services but improving them. This maintenance and improvement are good for people who have a disability, and rest assured we don’t think our work is done – we’re striving to remain abreast of developments. As the details of the scheme unfold, we’ll remain actively involved to ensure that the needs of people who are affected by MS can be met. Our regional staff members will help our clients navigate the new system, and we also want to collect feedback in order to influence any changes that might be required. So be sure to go to page 10 for an update about how DCA is being implemented. Our organisation is at the forefront, not waiting for changes to happen: we’re preparing now for what has already begun. For some years, MS Australia – ACT/NSW/VIC has been offering the MS Employment Support Service (ESS) to clients living in Victoria. The team members are poised to soon be operating in Sydney, and we have plans to expand the service even more. For an insight into the help the ESS can provide, take a look at the ‘MS and Employment’ feature on page 14. It makes for happy reading! Robyn Hunter CEO, MS Australia – ACT/NSW/VIC www.msaustralia.org.au/actnswvic 2 Intouch: Spring 2013 CONTENTS FEATURES 10 It’s here! DisabilityCare Australia – the National Disability Insurance Scheme – is open for business. 12 My story: Keep on going Terri Laurence urges people who have MS to become involved in the community. 14 Strategies for work Learn some steps to take so you remain employed. 28 MS Awareness Month highlights Catch up with what happened during the Kiss Goodbye to MS campaign. 30 Financial information: Employment and super What your rights are and how to access your superannuation MS COMMUNITY 23 Community fundraising: Thank you for your hard work. 24 Volunteers in action: Meet people who are helping to make a difference. 26 Peer support: Sharing the MS journey 27 Support Group profile: The Esperanza Peer Support Group HEALTH & WELLNESS 32 Take charge of your health: Invest in a cooling vest. 33 Ideas for exercise: Be inspired by these activities. 36 Spotlight on: sex and intimacy REGULARS 5 Your say 6 News 9 MS insights 13 Q&A 19 MS Readathon and Bequests 20 Events 22 Family and carers 39 New resources www.msaustralia.org.au/actnswvic 3 Intouch: Spring 2013 EDITOR’S NOTE Many people dream of the day on which they’ll retire from the workforce, but very few want to be forced into early retirement because of illness or injury. Sadly, when people are diagnosed with MS, one of the numerous worries they face is that they’re afraid they’ll have to leave their job. Although MS symptoms can definitely have an impact on your working life, they won’t necessarily cost you your job. In fact, if you’re supported to address how the symptoms affect your working life, you’re able to remain employed for many years. You not only remain productive and financially secure; you find that the support burden is taken away from your family and the government – a good result all round. This is one of the reasons that MS Australia − ACT/NSW/VIC is determined to assist people who have MS to remain at work. It provides help via the MS Employment Support Service (ESS): a small, committed team led by Stephen Jolly, the Manager, and Joanne Airey, the Senior Employment Support Consultant. The ESS has been established in Victoria, is expanding into Sydney, and is planning to operate in NSW and the ACT. Having had the pleasure of meeting Stephen and Joanne and hearing how passionate they are about ensuring that people who have MS can access all the help they need in order to keep working, I urge you to read the feature on page 14. When you work, you get so much more than a wage, so if you’re struggling in your job, consider seeking support and assistance. Toni Eatts Editor www.msaustralia.org.au/actnswvic 4 Intouch: Spring 2013 Win an Audi A1 or gold bullion to the value of $33,000 Win first prize in our latest Art Union and you’ll have the choice of a new Audi A1 1.4 hatch valued at $36,800 or gold bullion to the value of $33,000 to spend on whatever you choose! Join Club MS and enter our exclusive draw to win 2 oz of GOLD BULLION. Ticket prices start at only $15 so you’ll have the opportunity to both win one of these incredible prizes and help MS Australia – ACT/NSW/VIC in providing vital support to people living with MS! The competition will be drawn on 20 September. For more information and to purchase tickets, visit www.msraffles.org.au or FreecallTM 1800 287 367. www.msaustralia.org.au/actnswvic 5 Intouch: Spring 2013 YOUR SAY Thank you for sharing your stories, tips and feedback. We’d love to hear more! Readathon reminder I noted with interest the story about this year’s MS Readathon in the Winter issue of Intouch. In 1979, when I was in Year 7, I participated in the MS Readathon – see my certificate on this page – so how ironic it is that in 2011, I was diagnosed with MS. I now realise I should have read more books! Samantha Keir (née Bryant) East Brighton, Vic Editor’s note: After reading Samantha’s letter, we wondered whether any other readers had participated in the MS Readathon while they were at school and had later been diagnosed with MS. If your experience is similar to Samantha’s, please email us at [email protected] Book provided self-help I usually find something helpful in Intouch, and the Summer 2012 issue was no exception. I was diagnosed in 2008, but most of my symptoms are of the insidious, invisible type − fatigue, heat intolerance, depression, anxiety, insomnia and, my personal favourite, incontinence. Lately, I’ve been struggling with the depression and anxiety, so when I saw Dr Patricia Farrell’s book It’s Not All in Your Head in the ‘What’s New’ section, I didn’t hesitate to borrow a copy from the MS Australia – ACT/NSW/VIC library. It’s like a huge weight has been lifted from my shoulders. Not only does someone understand what I’m trying to deal with; she also provides some self-help techniques so I don’t have to rely on shoving another chemical into my body.