The Official Magazine of MS Australia – ACT/NSW/VIC www.msaustralia.org.au/actnswvic
ISSN 1833-8941 Print Post Approved: Spring 2013 100003204
Spotlight on sex and intimacy Great ideas that will inspire you to exercise
Stay employed With support, you can keep on working
DISABILITYCARE FINANCIAL AUSTRALIA INFORMATION What happens next? Superannuation and insurance www.facebook.com/MSAustralia http://twitter.com/MS_Australia www.youtube.com/MSSocietyAustralia
Editor: Toni Eatts Publisher: Multiple Sclerosis Limited 14 ABN: 66 004 942 287 Website: www.msaustralia.org.au/actnswvic Frequency: Published quarterly in March, June, September and December Advertising enquiries: Tel: (02) 8484 1316 Email: [email protected] Design: Byssus, (02) 9482 5116, www.byssus.com.au Photographs: The stock images published in Intouch are sourced from Thinkstock.com 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 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 ConnectTM (information and services): 1800 042 138 (free call)
Regional offices: Visit www.msaustralia.org.au/actnswvic and click on ‘Contact Us’.
Privacy Policy: For our full policy document, visit www.msaustralia.org.au/actnswvic ISSN: 1833-8941 36 33 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 might be appropriate. 30 Advertising disclaimer: Advertisements are provided to assist consumers to locate and purchase suitable products and services. Multiple Sclerosis Limited does not endorse any one product or service over another; nor do we receive any commission on sale of items. Consumers are encouraged to discuss the options for exchange or return at time of purchase with a specific supplier because Multiple Sclerosis Limited is not liable in the event the product is not satisfactory.
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
2 intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 intouch 3 Contents CEO’s message
FEATURES Welcome to the Spring 2013 issue 10 It’s here! of Intouch. DisabilityCare Australia − the First, I’d like to acknowledge the National Disability Insurance legacy and tremendous contribution Scheme – is open for business. made by Jeremy Wright, the founding CEO of MS Research Australia, and 12 My story: Keep on going to warmly welcome Dr Matthew Miles, Terri Laurence urges people previously from the University of NSW who have MS to become School of Medicine, to the role. Matthew involved in the community. is now leading the high level of research 14 Strategies for work activity and the record level of research expenditure. We’re firmly Learn some steps to take committed to ultimately finding a cure for MS and to eliminating the so you remain employed. 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 28 MS Awareness will continue to exist to improve lives and eliminate the compromises Month highlights imposed on them, and we’ll be sharing examples of how the Catch up with what changes are already leading to improvements in people’s lives. happened during the Kiss A number of important developments have occurred since the Goodbye to MS campaign. last issue of Intouch. In particular, from 1 July 2013, people who have a disability, and their family and carers, have started to move 30 Financial information: into DisabilityCare Australia (DCA), at four launch sites: the Hunter Employment and super area of New South Wales, the Barwon area of Victoria, in South What your rights are and how to Australia for children, and in Tasmania for young people. Importantly, access your superannuation commencing in July 2014, the DCA launch is being extended to Western Australia and the Australian Capital Territory. MS COMMUNITY Our organisation has two launch sites that are demanding our 23 Community fundraising: attention, and we’re also not only maintaining our existing services Thank you for your hard work. but improving them. This maintenance and improvement are good for people who have a disability, and rest assured we don’t think our 24 Volunteers in action: work is done – we’re striving to remain abreast of developments. Meet people who are helping As the details of the scheme unfold, we’ll remain actively involved to make a difference. 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 26 Peer support: Sharing the MS journey 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 27 Support Group profile: an update about how DCA is being implemented. Our organisation The Esperanza Peer is at the forefront, not waiting for changes to happen: we’re Support Group 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. HEALTH & WELLNESS The team members are poised to soon be operating in Sydney, 12 32 Take charge of your health: and we have plans to expand the service even more. For an insight Invest in a cooling vest. into the help the ESS can provide, take a look at the ‘MS and 33 Ideas for exercise: Employment’ feature on page 14. Be inspired by these activities. It makes for happy reading!
36 Spotlight on: sex and intimacy
Robyn Hunter REGULARS CEO, MS Australia – ACT/NSW/VIC 5 Your say 6 News 9 MS insights Look out for this symbol for 13 Q&A information and articles that 19 MS Readathon and Bequests are specifically relevant to 20 Events family members and carers 22 Family and carers CARERS of people who have MS. 39 New resources
2 intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 intouch 3 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
Remember: You can now receive Intouch via email. If you’d like to receive the magazine and MS Research Australia’s Next newsletter via email, please either email [email protected] or fill in and return the form on the front of the packaging this issue was mailed in.
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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. Giving Life Back
For more information and to purchase tickets, visit www.msraffles.org.au or FreecallTM 1800 287 367
4 intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 intouch PB Thank you for sharing your stories, tips and feedback. Your say We’d love to hear more!
Email us at [email protected] or post your letter to ‘Intouch’, PO Box 210, Lidcombe NSW 1825.
Write in to WIN! Keep your feedback and stories coming in! Next issue’s theme will be ‘Parenting and MS’.
Readathon reminder All readers who have their letter published will win an 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, organic tea and chocolate I participated in the MS Readathon – see my certificate on indulgence pack. 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 $1,000,000 I usually find something helpful in Intouch, and the Summer in community contributions 2012 issue was no exception. I was diagnosed in 2008, but most of my symptoms are of the insidious, invisible type Since opening in 2002, Molonglo Community Bank® Group − fatigue, heat intolerance, depression, anxiety, insomnia has contributed more than $1,000,000 in much needed and, my personal favourite, incontinence. Lately, I’ve been funds to local community groups, clubs and not-for-pro t organisations. struggling with the depression and anxiety, so when I saw Dr Patricia Farrell’s book It’s Not All in Your Head in the And, it’s all made possible by local people making a choice about where the pro ts from their banking business goes. ‘What’s New’ section, I didn’t hesitate to borrow a copy from the MS Australia – ACT/NSW/VIC library. It means that as a customer you bene t from competitive products and great service and get the satisfaction of It’s like a huge weight has been lifted from my shoulders. knowing your banking is contributing to your community. Not only does someone understand what I’m trying to deal So make a difference - to your own banking and to your with; she also provides some self-help techniques so I don’t community. have to rely on shoving another chemical into my body. Drop into your nearest branch at Calwell – 6291 3385, Thank you, Intouch and the MS organisation, for not Curtin – 6260 5140, Jerrabomberra – 6299 8357 or only bringing this book to my attention but enabling me Wanniassa – 6231 9024.
to borrow it. Bendigo and Adelaide Bank Limited ABN 11 068 049 178 AFSL 237879. 80M8 (173948_v1) (10/12/2012) Mel Bretherton Molonglo Community Bank® Group Point Cook, Vic
PB intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 intouch 5 NEWS
MS advocates confer MS Australia (MSA) hosted the National Advocates Conference ‘Championing the MS Cause’ in Melbourne, in July. The event was the first opportunity for Debra Beck Holland, Cerasa the new CEO of MSA, to the ACT shop meet with members of the National manager Advocates program. “We’re truly blessed that so many hardworking advocates Shop opens in the ACT are keeping important matters for After many months of preparation, supervises a team of 11 volunteers, people with MS on the agenda and aided by the new Tuggeranong but confirms that more volunteers of politicians and potential volunteers, our new MS Community are required. sponsors,” Debra says. Shop opened in the ACT on 15 July. According to Ara, “One of the The conference featured a range “It’s an exciting time,” says Ara impressive aspects of the ACT of keynote speakers, including Levonian, Retail Operations Manager, shop is the quality of the clothing, Janine Shepherd, who’s a former MS Australia – ACT/NSW/VIC. “We shoes, handbags and household winter Olympian and who was now have 10 shops in Victoria, one in items that have been donated so once a paraplegic but now not Sydney and one in the ACT. The shop far; however, still more items are only walks but flies planes, and gives the MS organisation a face in the needed. By making high-quality Carly Findlay, who’s a prominent Canberra community, and wherever we merchandise available, we promote disability advocate. have a shop, we have an increase in the ‘word of mouth’ among shoppers, so During the two-day conference, awareness of our brand.” we anticipate a boost in sales.” the advocates began fleshing out The ACT shop is located in the Last year, the shops contributed the priorities and issues that MSA Homeworld Centre at Tuggeranong, $250,000 to the organisation, and will take forward in advocating on and is open from Monday to Friday from Ara expects the figure to increase as behalf of people who have MS. n 9.30am to 5pm and on Saturday from the ACT shop gains strength. “We 9am to 2pm. Beck Holland has been began with a ‘soft’ opening, and early Project needs you appointed to manage the shop. She indications are excellent.” n Research project leaders at The University of South Australia, in partnership with MS Australia, Ruth wins OAM The founder of our popular MS want your help in undertaking Singers choir, Ruth Hawkins, has been research into how Australians awarded an Order of Australia in the who have MS use electricity for Queen’s Birthday Honours List. medically required cooling. Ruth began the choir at The Nerve They’ll use the results in order Centre, Blackburn, eight years ago, but to inform energy policies, including it’s only one of the voluntary projects the effectiveness of existing energy she’s involved in. She was awarded the concessions. They’re seeking OAM in recognition of her community households located within a Ruth Hawkins services for Maroondah, which is the 20-kilometre radius of Pennant area she lives in. members, and Ruth is both choir leader Hills, in Sydney’s north-west. If you Music is in Ruth’s blood, and she and accompanist. The choir members choose to participate, a researcher helped her mother start the Ringwood rehearse at The Nerve Centre every will collect information about your Eisteddfod almost 60 years ago. Now Thursday from 11am to 12 noon and air conditioner and house, and will 81, Ruth still organises the annual event. perform in nursing homes and clubs need your permission to obtain “I’m the fourth generation of a as well as for senior groups. two years’ worth of bills from your musical family,” she says. “I came in “We’re out performing nearly energy retailer. If you’re interested, contact with The Nerve Centre when every week,” Ruth says. “And we call Dr Frank Bruno at The University I was helping raise money for a piano get invited back again and again. of South Australia on either for the Centre. When we got the We’re always seeking new members, (08) 8302 3230 or 0413 853 257. n piano, I decided to form the choir.” and you don’t have to have a good The MS Singers have about 12 regular voice to join in the fun!” n
6 intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 intouch 7 News from MSAC
New MSRA CEO Dr Matthew Miles has settled into his role as Chief Executive Matthew Miles Officer of MS Research Australia (MSRA) after taking over from foundation CEO Jeremy Wright, who retired in late June. “I’m greatly enjoying leading MSRA,” Matthew says. By Andrew White and Mike Hemingway, “MSRA has a truly excellent reputation in funding the best Chairs, MS Advisory Council, Victoria and NSW MS research that Australia has to offer.” Have you ever wanted to win the lottery and never have Paul Murnane, MSRA Chairman, says Matthew brings to work again? For those of us in regular work, this can a unique combination of skills to the role: strong business seem attractive. But for many of us who have MS, the and fundraising experience, marketing and communications possibility of not working seems more of a threat than expertise, government-relations know-how, and clinical an opportunity. We obviously need to have a regular knowledge of neurological and related health issues. For income, but in recent years, according to the results the first 15 years of Matthew’s career, he was a practising of human-resource and psychology studies, having veterinary surgeon working in Australia, the UK and meaningful work is also important for social connection Singapore. He then became more involved in the ‘university and psychological wellbeing. and not-for-profit’ sector, especially focusing on business So, before we abandon work and its benefits, we management, external relations and medical research. He is should seriously consider our options. Some employers an Associate Fellow of the Australian Institute of Management are open to enabling us to have flexible working and a graduate of the Australian Institute of Company arrangements, or we can think about the experience, Directors, and he has an MBA from the Australian Graduate skills and knowledge we have and how they can be used School of Management. in other types of work that are more disability friendly. Most recently, he was a Director of Strategy, Development MS Australia – ACT/NSW/VIC has an employment and External Relations at the School of Medicine at The service through which you might be able to help yourself University of New South Wales. In that role, he helped raise continue working despite the impact of your MS. tens of millions of dollars in donations, pledges, grants and In other news, our NSW team members recently sponsorships for critical medical-research initiatives; indeed, held a planning day and are now reviewing the web annual fundraising at UNSW Medicine increased dramatically sites of MS Australia – ACT/NSW/VIC and the national during his almost six years in the role. organisation, MS Australia. The aim of the review is to “I know all too well the devastating impact a disease such provide feedback about the websites while they’re being as MS can have on people, their family and their loved ones,” improved. MSAC NSW is also working with the Victorian Matthew says. “It’s a privilege to have the opportunity to play MSAC team to examine carers’ needs. a part in tackling the MS challenge.” n Meanwhile, MSAC Victoria is continuing to talk to carers via the MSAC Carer Project page on Facebook so we can provide feedback to the MS Australia – MS friends meet Sarah Ross-Smith gives her address, watched by Ann Lehmann, ACT/NSW/VIC board members and leaders. We’re In June, staff members and Regional Manager Central. also examining how the MS organisation might more advocates from MS Australia, effectively connect with and meet the needs of people MS Australia – ACT/NSW/ who’ve recently been diagnosed with MS. VIC and MS Research If you wish to discuss employment or anything else, Australia made their annual please contact us via the details below. And remember pilgrimage to Canberra to that by registering at our web site and visiting us on meet with the Parliamentary Facebook, you can provide us with a valued perspective Friends of MS. Secretary for Disabilities we can share with the board, leaders and team The longstanding event and Carers. The discussion members at MS Australia – ACT/NSW/VIC. is a unique opportunity to included topics such as educate some of Australia’s DisabilityCare Australia, key powerbrokers about and a highlight was Sarah living with MS. Hosted by Ross-Smith’s emotional senators Kate Lundy and presentation. Sarah is a Gary Humphries, the event lawyer and an ACT resident was attended by members who’s lived with MS for more of parliament who included than 15 years. A thankyou Andrew Leigh and Mike was also given to outgoing Email: [email protected] Symon, as well as Amanda senator Gary Humphries for Telephone: (03) 9845 2794 Rishworth, Parliamentary his years of support. n
6 intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 intouch 7 Organisation update Preparing for the future MS Australia – ACT/NSW/VIC is committed to improving the lives of people who have MS and to eliminating the compromises imposed on these people as a result of the disease. To meet these commitments, the organisation has to be sustainable and ultimately to thrive. However, Robyn Hunter, CEO of MS Australia – ACT/ NSW/VIC, points out that in recent years the organisation, as is the case with many not-for-profit organisations, has been experiencing unprecedented environmental change. of unmet needs of people who are organisation, we’re working hard “The change has occurred both living with MS. We have to think to increase fundraising revenue. internally and externally,” she explains. differently about the way we’re providing We’re also revising our operating “Some of the change has been very support and care, and we’re making models to ensure they’re efficient and positive, and some has entailed a changes and preparing now.” sustainable, and we’re identifying the unique set of challenges.” As a result, Robyn and the executive areas in which we’ll be championing The two major changes have been team are positioning the organisation the needs of people living with MS, by the introduction of DisabilityCare as being a high-quality, MS-specialist ensuring we remain relevant.” Australia (DCA) – a comprehensive, organisation providing services that Robyn points out that most clients watershed social-policy reform that span the lifetime needs of people who won’t notice a reduction in services affects the disability sector – and have MS, from early symptoms and as a result of the changes. “Services a significant increase in charities pre-diagnosis onwards. might be delivered in a different way, competing for fundraising. but we want to assure people who “Both have very real consequences Our goal have MS that we’ll work with all our for us,” Robyn says. “Both have In order to position itself in that way, clients who are affected, in order to an impact on the way we as an the organisation has committed to provide alternatives.” organisation approach the future, and keeping a long-term promise whereby However, Robyn accepts that some for both, our leadership team has been the strategic goal is to deliver more concern about the changes has been required to analyse the way we’re benefit to more people who are voiced, and she assures our clients currently operating. We’ve had to look affected by MS. Person-centred that she and the Board are listening in detail at the impact the changes approaches and funding are good to their feedback. “I urge people who will have on people with MS, and to news for people who have a disability, are concerned to visit our website, on chart a course for the future.” but they mean that service providers which they’ll find more detail about the In this strategic analysis, the needs must adapt and change. changes and who stands to benefit from of people affected by MS are always “We’re not waiting for the changes them. On the website, you’ll find links placed as paramount. “The prevalence to be imposed,” Robyn says. “We’re at to other information resources, which of MS is increasing at an apparent rate the forefront, preparing now and acting are there to help you better understand of 4 per cent a year. Also, the practical now to ensure that services are not just where we’re headed, and you’ll also outcome of the recent National Needs maintained but improved. We’re aiming find examples of how lives are already Analysis is identification of a range to improve our financial strength. As an improving as a result of the changes.” n
To find out more For more information about the changes being made to MS Australia – ACT/NSW/VIC and to give feedback or ask questions: • go to the ‘Our future’ section of our website, www.mssociety.org.au • email [email protected] • call MS Connect on 1800 042 138.
8 intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 intouch PB Snapshots of the latest MS insights in global MS research
Vitamin D and fatigue Researchers from the Menzies Research Institute Tasmania, including Professor Bruce Taylor and Dr Ingrid van der Mei, together with their Dutch colleagues, investigated the effects of sun exposure and vitamin D on fatigue and neuropsychological MS symptoms. Their results have been published in Potential new treatment Acta Neurological Scandinavica. Only nine people who have MS were included in the Phase I clinical trial, but the Over more than two years, the results as published in the Science Translational Medicine journal are promising. researchers examined sun exposure In the trial, which was designed for testing the treatment’s safety in humans, and vitamin D blood levels in 198 the researchers investigated a new treatment that’s aimed at stopping the body’s people who had MS and who also immune system from attacking myelin. According to the study results, the completed a questionnaire about treatment is safe, and although the patient numbers were too small for proving fatigue, depression, anxiety and whether it was of benefit to MS patients in general, the findings suggested that the cognition. The researchers found no treatment could be of use in preventing myelin damage. close association between vitamin They attempted to ‘re-train’ the immune system of people who had MS in D levels and depression but found order to specifically prevent the attack on myelin. The team members took blood that the level of depression was samples from people who had MS, and separated out the white blood cells. They lower in people whose vitamin D then attached parts of the myelin protein to the cells and re-injected the modified blood level was higher than 80nM. cells into each person. Applying this technique, they encouraged each patient’s However, when they took sun immune system to develop tolerance towards the myelin proteins, and hopefully exposure into account, they found use the new tolerance to prevent attack. that this association disappeared, According to study author Professor Stephen Miller, “Our approach leaves the which suggested that sun exposure function of the normal immune system intact. That’s the holy grail.” In existing MS has a potent effect on depression, treatments, suppression of the entire immune system can lead to side effects. independent of vitamin D. More research into this new treatment is necessary in order to determine whether In patients who had a higher the treatment is an effective form of MS therapy. For more information, go to level of sun exposure, a consistent www.msra.org.au/us-researchers-find-new-ms-therapyn close association with a lower level of depression was shown. New oral drug trial Fatigue levels were associated with neither vitamin D levels nor The results of a Phase II clinical trial for siponimod, a modified version of vitamin D supplementation. Again, fingolimod (Gilenya), have been published in the Lancet Neurology journal. however, higher sun exposure was Fingolimod is available for people who have MS. significantly associated with lower The clinical trial involved 297 people who had Relapsing–remitting MS. After fatigue levels. The researchers found three months of the treatment, the patients who’d been given one of the three no correlations between either highest doses of siponimod – 10, 2 or 1.25 milligrams – had a reduced number sun exposure or vitamin D levels and of new or newly active lesions each month, compared with patients who’d been anxiety or any cognitive measures. given a placebo. The lesions were observed by way of magnetic resonance They speculated that the biological imaging (MRI). At the highest dose, new or newly active lesions were reduced mechanism behind this finding by 82 per cent. Higher doses also had higher incidences of side effects. The is mood elevation caused by release most common of which were headache, slow heart rate and dizziness. of anti-inflammatory chemical Serious side effects included atrioventricular block – impaired electrical flow messengers in the skin in the heart, resulting in a slowed heartbeat – that is sometimes seen in people or suppression of melatonin who are taking fingolimod. release when the person is The researchers reported that siponimod is a promising candidate for exposed to daylight. development in Phase III studies. The 2 milligram dose seemed to provide the Note: For ‘safe sun exposure’ best balance between effectiveness and side effects. This is the dose that’s likely guidelines be sure to visit to be followed up in a larger, Phase III clinical trial. For more information, go to www.sunsmart.com.au n
Thinkstock/luchschen www.msra.org.au/phase-ii-ms-trial-promising-results n
PB intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 intouch 9 NDIS UPDATE It’s here! On 1 July, DisabilityCare Australia − the National Disability Insurance Scheme (NDIS) − opened its doors in four launch areas. DisabilityCare Australia (DCA) promises to apply individualised funding in order to take a lifelong approach to supporting people who have a disability. Before DCA, the type of support that was allocated depended on the number of places that were available in a limited number of programs. Under DCA, funding is provided so that people can get reasonable and necessary care and support, based on their individual needs, goals and aspirations. Over the next three years, this new way of providing individualised support will be tested and evaluated in the following four areas: • NSW: the Hunter area, including Newcastle • Victoria: the Barwon area, including Geelong • South Australia (for children) • Tasmania (for young people)
From July 2014, the scheme will commence in the ACT and the Barkly area of the Northern Territory. The Australian Government is working with the participating states and territories to roll out the scheme throughout NSW, Victoria, the ACT, South Australia, Queensland and the Northern Territory over a number of years.
What does the scheme involve? • who lives in a launch area and meets its specific age In DCA’s operating rules, multiple sclerosis is recognised and requirement (in NSW and Victoria, it’s ‘younger than 65’). listed as follows: • It’s a condition in which there will generally be sufficient How do I become a DCA participant? evidence that the person has a disability that’s attributable You need to meet the eligibility requirements as outlined in to an impairment. this article. You can check your eligibility by accessing the • Generally, there will be sufficient evidence that the My Access Checker, which is available on DCA’s website, impairment is, or is likely to be, permanent. www.disabilitycareaustralia.gov.au. The checker is a short Therefore, a person who’s affected by MS and who meets online self-assessment tool. When you’ve completed the the eligibility requirements could become a participant in the assessment, you’ll be instructed about what to do next. You scheme and access the supports if his or her MS has resulted might be asked to call DCA on 1800 800 110. in a disability. Alternatively, the person who has MS could be eligible for early-intervention support if intervention is likely What happens to the funding to lead to either a reduction in the person’s future needs in I already have? relation to the disability or alleviation of MS’s impact on the If you’re an existing client of Australian Government and person’s capacity to function. State/Territory Government disability programs, your services won’t change. For example, in NSW, the services might Who can use DisabilityCare include personal care and ‘home and community’ care, and Australia? in Victoria, they might include an individual support package, Anyone who’s affected by a disability, who meets either respite, or home and community care. the disability requirement or the early-intervention Because all people can’t have their support plan facilitated requirement, and: at once, each launch area has developed a timetable, and • who’s younger than 65 DCA will contact you when it’s time for you to start working on
• who’s an Australian citizen your plan with the scheme’s representatives. Thinkstock/JHuntstock
10 intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 intouch 11 NDIS UPDATE
Time to learn If you live in one of the launch areas, take the time to learn as much as you can about DisabilityCare Australia (DCA), advises Deborah Farrell, Acting Regional Manager South for MS Australia – ACT/NSW/VIC. “There are several ways to do this,” Deborah says. “In April, and again in July, we hosted a series of conversation forums in Geelong and Colac to help the MS community understand the scheme’s various constructs in preparation for the launch on 1 July.” More conversation forums will be held in Geelong and Colac in Victoria and the Hunter region in NSW, during which: • people who have MS will be offered the opportunity to discuss their eligibility and access to DCA • people who have MS will be offered the opportunity to discuss how to guide their discussion with the DCA representatives about the types of support they require in order to achieve their goals • people who don’t have disability types of support will be offered the opportunity to discuss how they can access the My Access Checker and complete the online self-assessment in order to determine their eligibility. Deborah says that help will also be given to people who have MS and who participate in disability programs funded by the Australian Government and a State/Territory Government, in order to Will I lose any of my determine the timeframe for commencement current benefits? of those people’s planning. Also, MS Australia – ACT/NSW/VIC has The scheme isn’t means tested. If you’re an existing registered to be a DCA service provider in the Hunter client of Australian Government and State/Territory and Barwon launch areas. “All participants will choose Government disability programs, you’ll continue to their provider and how they access the types of access your current types of support. When it’s your support as outlined in their individualised plan. We’ve turn to talk to DCA’s representatives, if you’re eligible registered so we can deliver the types of support to and you’re happy with your types of support, DCA will participants who choose us,” Deborah says. make sure your current supports are listed in your plan. MS Australia – ACT/NSW/VIC will also: Your individual plan won’t be decreased. The minimum • continue providing its existing government-funded standpoint is you’ll receive the same level of support, disability services and the services it either funds or and you might receive extra types of support based on subsidises in non-DCA launch areas your needs and what’s assessed as being reasonable • monitor the experiences of people who have and necessary. MS and who live in one of the launch areas, If you’re not eligible – for example if you’ve turned 65 gather information from staff members in order to but you’ve been accessing disability types of support understand the issues, and advocate appropriately. before that age – you’ll have the choice to continue to “We want to stay involved so we can learn as receive the same level of support you’re already receiving much as possible and support people who have by way of your disability programs. MS,” Deborah says. DCA is also holding forums at which you’ll be able to Will my carer still be eligible learn more about how the scheme is operated. To find for carers’ payments? out more, go to www.disabilitycareaustralia.gov.au/ Yes, this aspect is unchanged and does not affect
Thinkstock/JHuntstock CentreLink payments. n
10 intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 intouch 11 My story: Keep on going
Ron Laurence is so proud of his wife Terri’s zest for life that he talked her into sending one of her journal entries to Intouch. The entry is a description of a road trip they took on Ron’s trike and was the inspiration for this article.
With laughter in her voice, Terri Laurence talks about her husband Ron’s attempts to help her help herself. “He’s always going crook at me, because in the kitchen, I reach for things that are stored above me and I drop them – in fact, he’s put a sign on the shelf: ‘ASK FOR HELP!’” Terri and Ron have been married for 44 years and have raised four sons, whose ages now range from 33 to 42. Terri, 63, was diagnosed with MS when the boys were between four and 13 years old. She’s lived with MS for 30 years by cultivating an attitude of ‘Just get on with it!’ Hence the need for a sign. “I’m not good at asking for Terri and Ron Laurence help,” she admits. enjoy riding the trike. It was early on that Terri learnt to cope with what life dealt – in fact, Ron, At the time she was diagnosed, 2012, her neurologist said her MS had who spent 25 years serving in the Terri was working in catering, but in developed into secondary progressive. Australian Army, was doing a tour of 1990, she took a position in a primary “My memory’s going, and that’s really duty in Vietnam when their first child, school as an ‘integration aide’, helping frustrating. Physically, there are things Robert, was born. students who had physical and I can’t do any more. I sent my driver’s Terri says, “For the first year, I emotional problems. licence back, because it was too much brought Robert up on my own.” The “Those children were inspiring,” she of a temptation.” lad had turned 13 and Terri’s youngest says. “When I felt sorry for myself, I’d After decades of being independent, son was four when pins and needles think of the boy who was legally blind Terri now relies on Ron, who’s become in her hands, arms and legs led to a and yet got on a bike and rode it.” her carer. Ron says he worked hard at diagnosis of MS. Eventually, symptoms such as encouraging Terri to send her story to “The doctor told me to get on fatigue took their toll, and Terri gave up Intouch. It encompassed their recent with my life. I decided I wanted to paid work and took voluntary positions. 4,250-kilometre, 17-day journey on guide the boys through their Once a week for several years, she a trike, travelling from Whittlesea to education and see them married. helped on a mini-bus for people who Maryborough, in Queensland. “Terri’s a I didn’t say much to the kids about had a disability. She also volunteered at quiet person who’s done a heap having MS. Robert was doing the Watsonia, the MS accommodation and of volunteer work,” Ron says. “She MS Readathon at school, so he respite facility. “For a few years, I took prefers to remain in the background knew about it. Ron was still in the people with MS to their appointments. as a quiet achiever.” army, and I didn’t discuss it with him, I felt needed, and I enjoyed helping “I love the trike,” Terri adds. “We because it was my problem.” someone. I never let on I had MS, meet so many people. Yesterday, we During that period, Terri found a because compared with me, they were went to Seymour, and no matter where coping mechanism that still serves in a much worse condition.” we go, whenever a car passes, we get her well. “I keep a journal. I don’t Since 1996, Terri has been using the thumbs-up. My advice is ‘Get on burden the family. I write down a walking stick, but in recent years, with life; don’t sit around thinking about how I’m feeling, and it’s between her mobility has deteriorated and what you can’t do; keep on going, and me and my journal.” she now relies on a walking frame. In be part of the community.’” n
Would you like to share your story with other people living with MS? Call the editor on (02) 8484 1316 or email [email protected]
12 intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 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.
Can you tell me about the latest oral drugs for MS that are available in Australia? – Daniel, NSW
The latest oral drugs on the market are teriflunomide (brand name Aubagio) and BG-12 (brand name Tecfidera). Teriflunomide has been approved by the Therapeutic Goods Administration (TGA) and is available in Australia under a Product Familiarisation Program. The Pharmaceutical Benefits Advisory Committee (PBAC) considered the drug at Only rarely, some people develop problems related to the committee’s July meeting, for listing under the their liver, skin or blood; increased blood pressure; or pain. Pharmaceutical Benefits Scheme (PBS). BG-12, Based on animal-study results, teriflunomide can cause meanwhile, was approved by the TGA in July and is birth defects if it’s used during pregnancy. It shouldn’t also being considered by the PBAC. At the time of be taken by pregnant women or women who are of writing, the PBAC’s recommendations weren’t known. childbearing age and aren’t using effective contraception. In clinical trials, both of these oral MS medications have been shown to lead to a reduction in relapse rates and a BG-12 slowing of the rate of disability progression in people who Taken twice daily as a capsule, this drug is a compound have Relapsing–remitting MS (RRMS). called dimethyl fumarate, and has both anti-inflammatory When the PBAC members are making and neuro-protective effects. In Europe, it’s been used recommendations, they’re required to consider a as a treatment for psoriasis for many years. In two recent number of factors, including the treatment’s clinical Phase III clinical trials, relapses were shown to be reduced efficacy and cost effectiveness relative to other medicines, by at least 50 per cent, and disability progression in RRMS as well as a new listing’s cost to the government. patients was shown to be slower compared with that in The Federal Government then considers the PBAC’s patients who were given a placebo. MRI scans showed, recommendations, for final approval. new lesions were also reduced compared with the effects of another medication, glatiramer acetate. Teriflunomide These two Phase III trials have been extended so This drug belongs to a class of medications called researchers can examine the drug’s long-term effect pyrimidine synthesis inhibitors. It’s in the form of a film- on relapses and disability progression. coated tablet that’s taken daily by mouth. It acts by Although BG-12’s mechanism of action isn’t fully interrupting the life cycle of specific types of white blood understood, the drug is thought to modulate the immune cell, called lymphocytes. In MS, these small lymphocyte system and protect it by way of a molecule called Nrf-2. cells have a role in destroying myelin, the protective sheath When the Nrf-2 pathway is activated, the neurons are that surrounds nerve fibres and is an aid in efficient flowing defended against death caused by oxidative stress, the of nerve signals or messages to and from the brain and blood–brain barrier is protected, and maintenance of various parts of the body. myelin integrity is supported. The side effects can include Teriflunomide works by causing a reduction in flushing and feeling hot; headaches; and gastrointestinal production of an enzyme – a type of protein – that upset such as diarrhoea, nausea and abdominal pain. Seek lymphocytes require in order to divide and mature. The medical advice for use during pregnancy. n number of lymphocytes circulating in the blood and reaching the central nervous system is thereby reduced, MS Australia – ACT/NSW/VIC does not recommend and in turn, damage to the nerve cells in the brain and any specific disease-modifying treatment. Please spinal cord is reduced. consult your neurologist. The reported side effects of the drug’s use include nausea, abnormal liver test results, diarrhoea, and This article has been reviewed by Dr Lisa Melton, Research
Thinkstock/Jupiterimages hair thinning or loss. Development Manager, MS Research Australia.
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Strategies for work
When a person is diagnosed with Service (ESS), MS Australia − ACT/NSW/VIC, points out, the MS, he or she will worry about a lot barriers that diagnosed people face in gaining or maintaining employment aren’t due to a lack of skills or work experience. of things, not the least of which is “The barriers are caused by the condition,” he says. “Some whether they will keep their job. 50–80 per cent of people who have MS leave full-time But if they have help and a plan, employment within 10 years of being diagnosed, despite the they might be able to remain fact that most of them have a positive work history at the in the workforce for years. time of the diagnosis and are typically in a highly skilled job. Addressing the barriers to employment that are due to the effect of MS symptoms is the key to supporting people who have MS to keep their job and remain employed.” Work gives us more than an income − we develop our MS Australia − ACT/NSW/VIC acknowledges that skills, enjoy social contact, stay active, and have structure employment is a major concern for people who are living and routine in our days. We can also gain immense with MS, and set out to help. As a result of the changes that satisfaction as we reach the goals we’ve set for ourselves, were made to government funding in March 2010, the finish projects, or overcome challenges. In addition, work ESS in Victoria was able to expand significantly. “We’re the can be an essential element in how we view ourselves, only specialist employment-support service in Australia that’s because through it we can gain status and shape our working exclusively for people who have MS,” Stephen self-esteem and self-confidence. says. “Mostly, we support people who are concerned about For many people, learning that they have MS can keeping their job. Since we’ve had the ability to expand the mean that their job is threatened; in fact, even if their service, we’ve helped more than 350 Victorians either gain manager or employer is an understanding person, their employment or remain employed.” long-term employment can be at risk because of the In March 2013, MS Australia − ACT/NSW/VIC was disease’s unpredictable nature. accepted as a Job Futures member, whereby the According to the results of the Australian MS Longitudinal organisation was able to continue the ESS program. Job Study, 90 per cent of people who have been diagnosed with Futures is an Australian Government initiative and is one of MS either are employed at the time of the diagnosis or have Australia’s largest employment-service providers. Now, as a history of being employed and experienced in work; in fact, a Job Futures member, the ESS is planning to expand the many people are in the period of their life in which they’re program into NSW. “We’ll start in the Sydney metropolitan building a career and family and paying off a home loan. area, but we hope to extend the service to the wider regions As Stephen Jolly, who’s Manager, Employment Support and the ACT,” Stephen explains.
14 intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 intouch 15 Help with symptoms Meanwhile, according to Joanne Airey, who’s Senior Employment Support Consultant, Employment Support Service, MS Australia − ACT/NSW/VIC, a person who has MS can do a lot in order to remain employed. Symptoms that can cause difficulty at the workplace include fatigue, optic neuritis (visual difficulties), having problems walking or standing for extended periods, needing to go to the toilet more often, maintaining concentration, and remembering things. “If a symptom is affecting the person’s work, we can Name: Rebecca Wood do an assessment to establish strategies and decide on Age: 36 the equipment the person might find useful so he or she Employed: Business Manager and Audiologist can find it easier to stay working. We can use funding from with Bernafon Australia Job Access to buy the aids and equipment required. Through Lives: Melbourne the progam, we’re also able to subsidise some services Diagnosed with MS: 2010 or therapies so people can better manage their symptoms and ultimately do their job.” When I was diagnosed, I was managing a large Joanne says the ESS can also arrange for a personal audiology practice. Soon after, I decided to switch jobs carer to help via the Work Based Personal Assistance and to tell my new employer about my MS, because program, from which the person is provided with help for I needed his understanding. My symptoms include up to 10 hours a week so he or she can remain working. transient numbness and tingling, fatigue, and short-term “For example, one man who used a wheelchair needed help memory loss. I work full time, and about 18 months ago, getting to and from his car.” I took 12 weeks of maternity leave to have our first child, This type of help can be useful for not only ongoing and then returned to work. assistance but while the person with MS is recovering from In October 2012, a friend who has MS suggested I a relapse. Joanne warns that the time immediately following phone the MS Employment Support Service. I didn’t call the diagnosis or during a relapse can be when people are immediately, but when I did, the ESS consultant came tempted to make decisions about their work. “Any decision to to my house and made some terrific suggestions. As a change work hours or leave work should be an informed one, result, I now use a Livescribe digital pen during meetings. and no one should leave work without seeking advice.” It’s a digital pen that captures audio and synchronises A professional such as an occupational therapist, a with what I write. I now find it easier to concentrate and physiotherapist, a social worker or an MS nurse can suggest contribute to the discussion, because I don’t need to strategies for managing your symptoms. “Most people take extensive notes. The ESS also found funding for an with MS have no idea of the range of adaptive equipment iPad, so I no longer lug a large laptop around – I just pop that’s available, such as different styles of keyboard, visual the pen and iPad into my handbag. equipment and mobility aids,” Joanne says. During the consultant’s visit, she noticed I worked at Another cause for concern is whether you should tell your my kitchen table. She said the set-up wasn’t optimal employer you have MS. The choice is yours, unless your for posture so she organised a new desk, chair and symptoms constitute an ‘occupational health and safety’ risk. footrest. Because heat can affect my fatigue, she also For example, if your work involves operating equipment had an air conditioner installed in my home office. Other and your symptoms entail a risk to you or anyone else, improvements included a Therapod backrest for my you’re required to disclose you have MS. There are car, to improve my posture and relieve aches and pains also some government departments that require you to when I’m driving between clients. In order to relieve disclose health conditions such as MS. muscle stiffness, I have my exercise subsidised, so I “About 50 per cent of the people I’ve worked with haven’t now do taekwondo twice a week. In addition, someone disclosed,” Joanne says. “For some people, the right time to from a cleaning service comes fortnightly, which means I tell their employer is when the MS begins to have an impact don’t have to do any heavy lifting. at work. It could be that they’re slurring their speech and I have career aspirations, and I’m hoping I can move having trouble remembering things, so that people think they upwards, so I’m working hard to make sure I’m the have an alcohol problem.” logical choice. The consultant has empowered me to Regardless of why you’ve decided to disclose, you don’t do things for myself. Best of all, I’m up to date with my have to deal with the situation alone: a representative of work, which means I can spend my weekends with my MS Australia − ACT/NSW/VIC can attend the meeting, or husband and daughter. My life’s changed for the better! you can take your union representative along if he or she
Thinkstock/Digital Vision understands the impact of MS. You can also ask your GP or
14 intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 intouch 15 MS and employment neurologist to write a letter to your employer in order to Time to change? explain your condition. If the day comes that you need to change your employment “Disclosure can sometimes lead to a sense of relief, or scale it back, you’ll need to seek advice and make informed because the person with MS is able to ask for help, for decisions. If you have a good relationship with your employer example to have more flexible working conditions or have and remain open to discussing your situation, you might be adjustments made to his or her equipment such as by able to reduce your hours, change your job description, work requesting a larger computer screen. We can access from home or become self-employed. the equipment in a way so there’s no cost to you or your Before you take the final step, however, you need to seek employer. If working from home becomes an option, we also advice and investigate the longer-term impact your decision have funds available for equipping a home office.” might have on your entitlements, such as superannuation, Your confidence can receive a boost when you realise that insurance and Centrelink payments. your employer will gain huge benefits from maintaining you “Everybody’s different, and every journey with MS is as a productive employee. Employers find it easier to make different,” Joanne asserts. “If you’re in the workforce or adjustments for a valued employee than face the risk and you want to return to it, contact MS Connect as the starting expense involved in recruiting someone new. point; you’ll be put in contact with us, and we’ll meet you You can also request assistance and advice from the wherever you want – at an MS-organisation office, your ESS about strategies to use both at the workplace and home, your workplace or a café. You might find it helpful outside it in order to help yourself stay on at work. For just to talk to us, and you mightn’t even require a workplace example, fatigue is one of the biggest causes of early assessment. Often, the simplest things can be the reason retirement, but there are many ways in which to deal with that people’s life is made easier and they’re able to keep it, such as taking regular breaks, modifying your hours, working. If the person requires assistance dealing with larger exercising regularly, managing heat, and using a cleaner problems, we can help them get the right equipment or and/or gardener at home so you can reduce your level of treatment and can empower them to handle their symptoms fatigue and help yourself continue working. and stay in the workforce for longer.”
At the end of 2011, I had a Baclofen pump implant placed at the base of my spine, and I got an infection that put me in a wheelchair. I couldn’t drive, and driving’s a big part of my work. I contacted the Employment Support Service, and they were great. They organised hand controls for my car, a course about how to use them, and the driving test. They also provided a wheelchair hoist. Because fatigue is a problem, they rearranged my home office so it worked better, provided storage, and improved the lighting. I have to wear business shirts, which I’d been finding difficult to iron due to the heat and fatigue, Name: Rob Mackay so they arranged for the ironing to be done. I’m also Age: 40 married, with three young children, so rather than increase Employed: Project Manager, Kane Constructions my fatigue trying to help my wife, the ESS organised for a Lives: Melbourne cleaner to come in. Diagnosed with MS: 2004 After I healed from the infection, I returned to using crutches at work, or a three-wheel scooter. I had a I was diagnosed when I was 31. I’d had trouble running, but few falls on site, so the ESS arranged for me to trial a I’d put off going to the doctor, and when I was in Canada manual wheelchair that had a new power-assist device, skiing, I kept falling over and couldn’t walk very far. I was and the wheelchair can power up steep hills, through already working for Kane Constructions, so I kept them in carpet and over grass. We’re waiting to see whether the the loop while I was being diagnosed. ESS can secure funding for it. Initially, my MS didn’t have an impact on my work, The ESS is constantly there for me. Without their help, I’d but I spend a lot of time walking around large building find working extremely difficult. sites, and my strength started to wane. I have Primary My company has also been supportive, modifying the Progressive MS, and as I got worse, my manager role to suit my ability and giving me time to do what I need modified my role so I don’t have to do as much walking to do. It’s a progressive company that also makes financial around. I also do some work from home. contributions to MS research.
16 intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 intouch 17 MS and employment Employment service expands MS Australia − ACT/NSW/VIC offers people who apply for jobs, write a resumé and practise your have MS the opportunity to either stay in employment or interview technique. return to the workforce via our MS Employment Support The ESS is a member of Job Futures, one of Service (ESS) program. Australia’s largest employment service providers. Until recently, the only people our organisation was Job Futures is the only national network of able to assist were people living in Victoria; however, community-based and not-for-profit organisations we’re now expanding the service into Sydney and we providing employment, training and related services. will eventually be making it available in the ACT and in To contact the MS Employment Support Service, call regional and rural areas. MS Connect on 1800 042 138. Drawing on staff expertise and knowledge of the For more information about Job Futures, go to effects of MS, we can use the ESS to help manage www.jobfutures.com.au/ symptoms at the workplace on an ongoing and regular basis. We can also support workers when they tell their employer about their MS, and can provide employers with MS-specific advice and education. If you’re not working but you’d like support in order to seek employment, we might be able to use the ESS to assist you by helping you identify suitable employment,
Disclose or not? Will I lose my job? Will I be able to work at all? These are two of the worries that hit you when you’re first diagnosed with MS.
Name: Vanessa Holt Age: 50 Employed: Part-time TAFE teacher Lives: Sydney Diagnosed with MS: 2000 It never occurred to me to keep my diagnosis a secret; it happened too fast to even think about. I went totally blind in my right eye in the space of a week, and had to miss a class to see the ophthalmologist – so I had to let my boss know. My boss joined the small gang of people who were deeply worried. When I found out I had MS, I told him; I was just relieved I didn’t have a brain tumour. I knew next to nothing about MS, and the lack of knowledge was beneficial at the time. I changed my diet to eliminate saturated fat, and took up vigorous exercise. I also meditate; take a range of vitamins, including B12, and fish oil; and make smoke is toxic for people who have MS. Quite often, sure I get a bit of sun regularly. I stay well, and work hasn’t they’re fascinated and they want to know more. Every been a problem . . . yet. now and then, one of them has a parent or sibling who The MS is always there – like the sword of Damocles. has MS, and disclosure can be a bonding experience. I’ve Teaching’s been a great job for me: I can’t sit for too long; I had freelance writing jobs during which I didn’t disclose my can’t stand for too long – when you teach, you can bounce MS status, because it’s as irrelevant as discussing my sex up and down at will. I’ll tell my students why I need to stand life – still, if people in the office want to know why I won’t eat back from them during their ‘smoke break’: the theory is that the chocolate cake, I’ll tell them.
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Name: Rhonda Fong Age: 50 Employed: Long-haul flight attendant Lives: Sydney Diagnosed with MS: 2011 From the moment I was diagnosed, my symptoms worsened. I had trouble walking up stairs, and my right leg would drag when I was fatigued. I’d been in my job for 25 years, and because I was fearful, I wasn’t going to disclose my condition. That changed when I sat in on an MS teleconference about work and employment, with a representative from Maurice Blackburn Lawyers. He advised me to disclose because my job was safety related. I thought, That’s it: I’m going to lose my job. Since my diagnosis, I’d been living on my long-service and annual leave so I’d have time to come to terms with having On my first day back, my manager was there to MS. I rang my manager, who was supportive and came back meet me, and I got confidence from the support of my with an offer for me to work on the ground, doing light duties. colleagues – they watched out for me and helped me with While I was doing that work, I was able to gauge how I was little things; for example, they told me to sit when I looked physically. I could see an improvement, and needed to know tired, or got my bags at the end of the trip. Later, thinking of whether or not I could return to the job I loved. I met with the my future, my manager offered me a two-month customer- company’s doctor, who cleared me to fly. The airline asked care position. I jumped at the opportunity to broaden my me for a return-to-work plan, and offered options such as experience. My manager gave me this chance so I could see ‘part time’, ‘domestic’ and ‘supernumerary’, which means I can do things other than flying. The airline could’ve given me you fly with a buddy for support – I was lucky enough to fly a redundancy; I’m so grateful to be still working with them. with my sister, who’s also a flight attendant. – As told to Vanessa Holt n
Manage your work relationships If you tell your employer you have MS, you’re better able ask about their weekend or how their kids are doing. to ask for help if you require it. Although some people will Be an active listener, and pay attention.” be concerned for your wellbeing and will want to help you, If you need to ask for help, Birgit suggests you others might resent any adjustments that are made in follow these guidelines: order to accommodate you. Therefore, it’s important you • Be clear about what help you require, and consider manage your relationship with your colleagues carefully. writing the request down so you can express it as Birgit O’Sheedy, who’s a Clinical Psychologist from confidently as possible. Waves of Life Psychology and who works with people who • Approach the person who’s most qualified to help you, have MS, says clients often discuss how much they should and make the request at a time that suits him or her. reveal at work. “Assess the positive and negative aspects • Explain clearly and politely what you need help with. of informing your co-workers,” she advises. “Ask yourself You could also give the person a brief explanation whether it’d be easier to manage your MS symptoms at of why you require help. Remember that the person work if your colleagues were aware of your MS.” mightn’t know much about MS. Birgit says it’s worthwhile to cultivate your relationships. • If you feel uncomfortable asking for help, remember “If you have a social connection with colleagues, you that if you’re assertive, you’ll minimise the stress you have a supportive environment in which you can ask for feel and any flow-on effect it might have on people. help.” This goodwill can be useful if you need to ask for a • If the people at your workplace aren’t open to helping deadline extension or to take more breaks. “Show interest you or you struggle with communicating assertively, in your co-workers’ life without being intrusive; for example, seek support from a counsellor or psychologist.
Useful resources MS Connect: Call 1800 042 138 or email [email protected] or [email protected] Financial Planning Association of Australia: Call 1300 626 393, or search the association’s online directory at www.fpa.asn.au to find a qualified financial advisor who’s located near you.
18 intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 intouch PB Author Oliver Phommavanh (left) joined MS Ambassador Stephen Papadopoulos and Pymble Ladies’ College students in a webcast event.
Marilyn and Ken Collins
Our story Ken and Marilyn Collins have been married for 39 years. Ken is vice president of the Western Plains MS Branch, and together they’re committed to helping rural NSW people who are living with MS. Following Ken’s MS diagnosis, in 2005, the couple phoned MS Australia – ACT/NSW/VIC to obtain information, because living in the country, they had limited access to specialists and specialised medical services. As a result of that phone call, Ken and Marilyn now feel they’re part of the wider MS family. The support Still time to raise funds they’ve received from MS Australia Last week, thousands of students involved. They spoke about the – ACT/NSW/VIC was the fuel for and adults closed the final pages on many benefits of the MS Readathon, their desire to build a strong support the 34th MS Readathon. Throughout such as the importance of reading, network for Western Plains residents August, these community-minded the magic of books, raising funds, who are living with MS. individuals counted books, magazines, and helping other people. After having a discussion with e-readers, newspapers and school Also, in July, a film crew descended the NSW Planned Giving Officer, readers towards their reading goals, and on Sydney’s Pymble Ladies’ College they were encouraged to consider they’re now collecting and returning the (PLC) to facilitate a live streaming of a leaving a bequest in order to help sponsorship funds they’ve raised. virtual school presentation into hundreds other people who have MS. To This year, many students have taken of schools throughout the ACT, NSW, anyone who’s considering making the lead in encouraging their peers to Queensland and Victoria, via webcast. a bequest, Ken says, “Please don’t get involved in this iconic fundraiser. The event was hosted by humorous hesitate to become a benefactor. Kayla Sandry, 14, first took part in the Penguin author Oliver Phommavanh, Your contribution will be gratefully MS Readathon in 2008, and to date and included a talk delivered by MS received and put to good use by she has raised more than $30,000. Ambassador Stephen Papadopoulos MS Australia – ACT/NSW/VIC to “Although I’ve encouraged students and PLC students, who encouraged help both people who are affected at my school over the years,” Kayla people to make a difference to other by this disease and people who are says, “this year I wanted to visit people’s lives simply by reading. yet to be diagnosed.” other schools and share information Our goal is to raise $500,000, and To order a free copy of our about MS and the MS Readathon, you can still collect donations or ask booklet Your Future in Your Hands, and show how easy it is to get involved friends and family members to sponsor which contains information about the and help people.” you, until 31 October. Don’t forget that importance of having an up-to-date In June and July, several Penguin everyone younger than 18 who raises will, and how to leave a bequest, Books Australia authors joined forces more than $40 will receive a reading please either call Donna Bradley with these inspiring students as well as reward as a thankyou. Log on to www. (Victoria) or Jacqui Sumner (ACT and our team of school-volunteer presenters msreadathon.org.au to see the rewards NSW) on 1800 443 867 or email and MS Ambassadors in order to that are available this year – as well as [email protected] n motivate teachers and students to get some great fundraising tips! n
PB intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 intouch 19 EVENTS For bookings or more information, email [email protected] or call 1800 042 138.
INFORMATION SESSIONS Registration is essential, because programs will run only if minimum numbers are achieved. For bookings or more information, please call 1800 042 138 or email [email protected]
Learn about MS Led by an MS nurse, this session is suited to people who’ve been recently diagnosed and people who want to meet other people and learn about MS and our services. 2 November, 1pm – 4pm Gloria McKerrow House, Deakin, ACT
Nutrition for Health and Wellbeing Led by Nutrition Australia, this information session is suited to people who want to know more about nutrition and practical cooking. It’s followed by a two-session Practical Cooking program, listed below. 12 November, 5.30pm – 6.30pm Gloria McKerrow House, Deakin, ACT
Practical Cooking Get on your bike Join us for these two sessions to be held at Join in the fun on Sunday, 3 November and be Nutrition Australia, Unit 5, 70 McLaurin Crescent, among the thousands of cyclists who participate Chifley, ACT. You’ll have the opportunity to share in the 2013 MS Sydney to the Gong Bike Ride the meal that has been prepared. in order to raise $4.5 million for people who are 19 November, 5.30pm – 7.30pm living with multiple sclerosis. 26 November, 5.30pm – 7.30pm “The MS ‘Gong’ ride is the largest mass- participation event in the NSW cycling calendar,” says Karl Kinsella, Events Development Manager, MS Australia – ACT/NSW/VIC. “Money raised by Gong-ride participants will be spent on providing essential day-to-day assistance and support for people living with MS.” Cyclists can choose to ride either the 90-kilometre course from Sydney Park in St Peters or a shorter, 58-kilometre course from Engadine. Either way, all riders will experience PHYSICAL-ACTIVITY GROUPS the spectacular scenery as they wheel it through Yoga for MS the Royal National Park, over the Sea Cliff Bridge ACT & NSW Wednesdays, 5.45pm – 7.15pm and along the coast road to Wollongong. Gloria McKerrow House, Deakin, ACT “Rider numbers are capped at 10,000 entries, Cost: $17 per session. Phone Ruth on 0401 288 921. so we encourage people to register as soon as possible,” Karl says. “The entry fee covers MS Exercise Class only the significant cost of staging the event, Wednesdays, 12 noon so riders are encouraged to commit to 6X Fitness Studio, 171 Maroubra Road, Maroubra fundraising a minimum of $250.” Call Shaun Hockley on (02) 8084 0880 for details. How you can get involved • If you’re unable to ride, why not ask a family Iyengar Yoga for MS member, friend or colleague to ride on your Tuesdays in Petersham; Wednesdays in Lidcombe behalf? You can offer to go online to help Cost: $10 per class. set up the team, rally support, and perhaps Call Tracy Martinuz on (02) 9646 0692. coordinate some local fundraising and facilitate a contribution to the team’s total in that way. Progress in MS Research Public Lecture • Go online to support a team by making a MS Research Australia (MSRA) invites you to attend a public lecture to donation and/or alerting your family members, hear from research experts on the latest findings in multiple sclerosis friends and colleagues to this good cause. research, as well as an overview of research discussions from the Every cent counts! Progress in MS Research Scientific Conference. • Have you considered volunteering? It can be 16 November, 9.30am – 12 noon Kerry Packer Education Centre a fun day, so give us a call to talk about the at Royal Prince Alfred Hospital, John Hopkins Drive, off Missenden opportunities we have available. Road, Camperdown To sign up to ride, donate or volunteer, visit This public lecture is FREE of charge, however, spaces are limited so please www.msgongride.org.au register online at www.msra.org.au/public-lecture to secure your seat. Thinkstock/Fuse/luckyraccoon
20 intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 intouch 21 For bookings or more information, email [email protected] or call 1800 042 138. EVENTS
INFORMATION SESSIONS CHAT ROOMS Learn about MS Available to clients and their family members who Suited to people newly diagnosed and to people have internet access; throughout all regions. who want to meet other people and learn more For registration instructions, please call our about MS and our services. Education Coordinator on (02) 9646 0657. 16 November, 10am – 1pm Footscray (TBC) Mobility Options Working with MS If you’re considering getting a mobility aid, come Explore your rights and responsibilities at work, as well and talk about various options with our occupational as superannuation, insurance, and financial matters. therapists as well as with other people who have MS. 16 October, 6pm – 9pm Blackburn 20 September, 10am – 11am
VIC Managing Fatigue and Coping with the Heat In the Kitchen If you’re having difficulty cooking, our occupational An overview of MS fatigue and how to manage this therapists will provide information about equipment. invisible symptom. Managing heat intolerance will also 23 October, 10am – 11am be part of the discussion. 6 September, 11am – 1pm Geelong Reading Options If you’re having trouble reading, learn about other Sleep Well – NEW! options such as audio-books and e-books. Explore the reasons that people with MS have 27 November, 10am – 11am difficulty sleeping, and discuss some strategies for improving your sleep. 30 October, 12 noon Bairnsdale; hosted by the TELECONFERENCES Bairnsdale Peer Support Group Available to clients and their family members; throughout all regions. To Medication Update register, please call 1800 042 138. The new and emerging medications will be discussed by MS Australia – ACT/NSW/VIC nurses. Managing Fatigue 9 September, 10am Benalla; hosted by the In this two-part teleconference series, you learn how to manage MS-related fatigue. Benalla Peer Support Group 2 and 16 October, 10.30am – 12 noon 2 October, 5.30pm Geelong 13 and 27 November, 10.30am – 12 noon 19 November, 10am Shepparton Continence Care in MS Conversation with Centrelink Learn about bladder and bowel problems: causes, Hosted by the following Peer Support Group. assessment, and treatment options. Join one of Centrelink’s officers to discuss 17 September, 6.30pm – 8.00pm pensions and entitlements. 15 October, 10.30am – 12 noon 8 November, 10am – 12 noon Geelong 19 November, 10.30am – 12 noon
Continence Care in MS Working with MS Learn about bladder and bowel problems: the causes, (NSW and ACT only) assessment, and treatment options. Explore your rights and responsibilities at work, as well 16 October, 1.30pm Blackburn; hosted by the as superannuation, insurance, and financial matters. Blackburn Discussion Group 17 October, 7pm – 8.30pm
Role of an Occupational Therapist A local OT will speak to the Swan Hill Peer Support Group. 7 October, 11am Swan Hill
Research Update A representative from the Monash Medical Centre MS Clinic will address the Mornington Peer Support Group. 12 November, 11am Mornington
Wills and Estates A specialist in wills and estates explains the importance of wills, Power of Attorney and Guardianship. 24 September, 10.30am Blackburn WELLNESS EVENTS Explore ideas and strategies for living well with MS. You will receive an invitation via either mail or email.
View programs MS Family Wellness Day 6 October Mornington Recordings of some education programs are Aimed at families, couples and singles, the program now available via the MS Australia website: includes a guest speaker and wellness activities such www.mssociety.org.au/education-programs.asp as yoga, tai chi and massage. Lunch will be provided.
Thinkstock/Fuse/luckyraccoon Contact us to register your interest.
20 intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 intouch 21 FAMILY & CARERS Limited work optionsCARERS Carers face all kinds of challenges, some of which can seem impossible to deal with. Work is one of them. No use sugar coating it: combining a career with caring for a be provided. It’s best suited to taking time out to do the family member is very difficult, according to Brenda Fisher, a shopping or have a coffee.” Peer Support Volunteer for the Carers Working Party. Housework is another concern. If the carer is busy at work, Because ‘MS and employment’ is the theme of this issue will the respite carer do the chores around the house? “The of Intouch, Brenda went on to Facebook to ask the members answer is probably no,” Brenda says. “This means that for of the Carer Peer Support Group for their input. Their carers, life is made impossible because they have to juggle response was swift and strong. “It’s such a difficult their caring work, paid work and housework.” issue – one that causes a lot of stress,” Brenda says. Carers were also concerned about the impact that paid One of the most challenging aspects is the Catch 22 work would have on their entitlements. If you’re concerned situation in which the carer has to obtain respite so he or she about that aspect, Brenda recommends you talk to either a can have the necessary time away from home in order to go Centrelink staff member or your Community Support Worker. to work. “To get respite, you generally need to know when If you require more support, go to the Facebook page and you require it. However, you won’t know that until you get a ask the question there, because your peers might know the job – so the dilemma is: what do you do first? In addition, it’s answer. “In the group,” she says, “it’s terrific to be able to impossible to get enough ‘attendant carers’ so you can take share problems and be offered solutions.” a full-time position, which means it has to be part time.” If you’re interested in improving your work skills so you Brenda points out that a significant amount of part-time can apply for jobs, Brenda advises you to look into what your work is offered for either the morning or the evening and municipal or shire council might have on offer. “Most councils therefore coincides with the most demanding times of day: provide computer courses and other skills-based courses, the ‘peak periods’ for the carer’s role at home. and you’re able to get respite so you can attend them.” n As one male carer put it, “I was unable to obtain enough respite hours for me to stay in full-time employment, and last year, I came to the conclusion I had to retire. After some For information about respite, go to: months, I returned as a casual. It’s mostly work on weekends, NSW www.workingcarers.org.au/carer-fact-sheets/99- if required, so it doesn’t interfere with all the appointments we support-for-carers/106-respite-care have to attend throughout the week.” Victoria www.carersvictoria.org.au/advice/services-supports/ Brenda adds, “Sure, respite is available for carers via respite-carer-support/ various agencies, but it’s not the solution if you want to To connect with carers on Facebook, go to: enter the workforce, because not enough hours can www.facebook.com/groups/413493135353497/ Thinkstock/lwebphotographeer
Raising awareness Front row, from left: Sam O’Halloran stands next to her son Jacob, surrounded by some Sam O’Halloran organised ‘Team MS Mafia’, a 12-strong of the members of Team MS Mafia. group of family and friends, to walk in the Sydney MS Walk and Fun Run as a thankyou for the support she’s received from MS Australia – ACT/NSW/VIC. After some 15 years of having his MS symptoms misdiagnosed, Sam’s husband Aaron was finally diagnosed in December 2012, just before he turned 40. However, Aaron had an undiagnosed MS relapse which coincided with spinal surgery in June 2012. “I became his full-time carer then,” Sam says. “It’s been a bumpy ride. I’m new to caring; I joined the Carer Peer Support Group on Facebook, and I’ve learnt a lot. I wanted to give back.” For 13 years, Sam has been raising funds for causes that are close to her heart, including breast cancer, and will continue to do so. But now she has also switched her attention to raising funds for MS. Sam and Aaron’s 13-year- Also, Team MS Mafia was featured in Sam’s local old son Jacob and some of Sam’s old high-school friends newspaper, the Hornsby Advocate. “It’s important to raise were among the members of Team MS Mafia. The team awareness about MS,” she says. “If we’d known more, raised about $4,000 from the Walk and Fun Run. Aaron might’ve been correctly diagnosed earlier.” n
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Darcy Community support McCann We’d like to thank the many people who take the time to raise funds in order to support people who are living with MS. Here’s how some people have rallied together to help make a difference.
Epic cycles for MS Fishing fundraiser About 100 people took part in the second annual Family Fishing Challenge, conducted by Rapala and Discovery Holiday Parks and held at Lake Jindabyne on 4–5 May. They raised $2,850 for people with MS. It was organised by Jindabyne resident Steve Williamson. “I’ve been running competitions for years,” Steve says. “One of our young entrants, Darcy McCann, was diagnosed with MS last year, so we decided that the money raised should go towards MS.” TV personality Robert Paxavanos, of Fishing Australia fame, made an Marg Hayes and appearance, but a highlight was when Malcolm McKinnon arrive in Darwin. Darcy, 11, took out the Champion Junior Angler category having landed Inspired by her partner Bruce, Meanwhile, while Marg, Malcolm a 53-centimetre Brown Trout. Darcy who’s been living with MS for 20 and John were undertaking their ride, was accompanied by his father, Matt years, Marg Hayes joined Malcolm Ralph and Peter Kiel were setting off McCann, and the McCann family also McKinnon and John Kerby on a to ride 3,500 kilometres from Perth to won the Champion Family category. fundraising adventure. On 6 April, the Ballarat, in memory of their mother, Plans are in place for next year’s trio began a 4,000-kilometre ride from who’d lived with MS for many years. event, to be held on the Anzac Day Falls Creek to Darwin, pulling their The ride took 25 days to complete, and weekend of 25–27April. “We had twice supplies behind them on trailers! Ralph and Peter raised an incredible as many entrants as we had last year,” An amazing 38 days later, they $40,000 for people living with MS. Steve says, “so we’re hoping for even completed their epic cycle having Thank you to these five inspiring, more in 2014, which means we’re raised $12,500 for people with MS. and very fit, individuals! n aiming to raise more money for MS.” n
Create a fundraising event You and your friends can make a difference.
If you’d like to help raise funds for people living with MS, call us for a chat.
It’s easy to get started. Please contact your local Community Fundraising Officer: ACT: Mirimba Kovner, (02) 6234 7030 NSW: Kerry Hill, (02) 8299 0134 Victoria: Gill DeCis, (03) 9845 2880
PB intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 intouch 23 MS COMMUNITY Volunteers in action How our dedicated volunteers are helping to make a difference for people living with MS
Braving wild weather Almost 400 volunteers throughout a total of 500 hours to ensure that the Melbourne, Sydney and Canberra event ran smoothly. Also, because were up early on Sunday, 2 June to of the record number of participants, Rain couldn’t dampen the help at our MS Walk and Fun Run. our volunteers were given new roles smiles. This event is our annual major and challenges, such as staffing fundraiser and involves more than an additional drink station. All the In Canberra, 70 volunteers 11,400 participants. So far, more than volunteers rose to the task, and committed more than 360 hours $1.7 million has been raised. participants commented on how their over the weekend and faced wet Unfortunately, a cold front swept smiling faces made such a difference. conditions with a smile and a across south-eastern Australia on the In Sydney, the weather was wet measure of grim determination. The day, and with it, rain and wind that but the participants and volunteers volunteers at the start site were asked were a threat to the participants’ spirit. braved the rain to make the event a to react quickly when the volunteer Thankfully, however, our volunteers success. The crew of more than 220 marquee had to be dismantled due weren’t put off; they brought smiles volunteers contributed a total of more to high wind, and all of them rose and enthusiasm to the role of delivering than 800 hours. Some volunteers to the challenge. Many participants yet another successful event. were required to deal with course commented on the smooth running of In typical Melbourne style, three adjustments whereas others worked the event and on the cheering sight of seasons in one day were experienced in conditions of flooding to ensure the MS volunteers along the course. at Albert Park Lake: the day began structures stayed safely on the ground. We thank our dedicated volunteers with rain but finished with beautiful Their enthusiasm and dedication were for their hard work and smiles, and for sunshine. Some 90 volunteers worked appreciated by the participants. enhancing a great fundraising result. n
An unexpected friendship Allan Pennicook volunteered to take After having a brush with death, Allan something more personal. He saw Stephen Tsindos to the pool. Pennicook was propelled to a job notice on Seek Volunteer for volunteer, but he never expected someone to take a person who to make a close friendship. had MS to the Australian Institute of Allan, 64, is a retired school teacher Sport swimming pool once a week. and music administrator who lives “That’s how I met Stephen, in October in Canberra. Six years ago, he felt a 2012,” Allan explains. pain in his back while playing tennis. Stephen Tsindos was diagnosed with The pain intensified; an ambulance MS about 20 years ago, and now lives was called; and when Allan regained in a nursing home. “I really admire his consciousness, he found himself in positive attitude to his disability,” Allan hospital, having undergone heart says. “We’re the same age, and we wonderful things about surgery, and learnt he’d been lucky to share a love of music. We’ve become our friendship is there are no survive. “I’d been knocking on heaven’s great friends.” awkward moments between door for seven minutes,” Allan says. “It Allan began by watching over us. From helping Stephen in and changed the way I look at life.” Stephen while Stephen was swimming, out of the car to helping him dress, Allan committed to taking care but nowadays, the pair might go to I find that our friendship has an of his health and giving back to his the movies, a café or one of Stephen’s easy calm to it. He acknowledges community. As the drummer in a jazz medical appointments. the little things I do, and my band, he regularly plays at charity “He’s come home for lunch a number biggest reward is to share the functions, but he now wanted to do of times,” Allan says. “One of the experience with him.” n
24 intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 intouch 25 Volunteer opportunities We are always looking for more volunteers, and here are some opportunities we’re aiming to fill right now:
VICTORIA western Sydney, a volunteer l Volunteers are required for visits to is needed for home visits and people who have MS throughout meal preparation. Melbourne and other regions. l Volunteers are required for home l Volunteers are required to visits in Turramurra, which is a support the MS shops in Fairfield, northern-Sydney suburb, and in Daylesford, Malvern, Waverley Cattai, which is in The Hills Shire. and Geelong. l Volunteers are needed for helping with yoga classes at the NSW–ACT MS Studdy Centre, Lidcombe. l If you have a green thumb, we l In regional areas of NSW, could use your help to tidy up the volunteers are required for garden at Gloria McKerrow House, helping people who have MS to
Doug Talbert in Deakin, Canberra. complete various tasks. l Volunteers are being sought for the new MS shop in Canberra’s If you are interested in any of Tuggeranong area. these opportunities or any other l Volunteers are required in the ACT volunteer role throughout our for visits to people who have MS. regions, please call MS Connect l In the Carlingford area, in north- on 1800 042 138. International award nominee After volunteering as a masseur Calling for MS Ambassadors for seven years, Doug Talbert We’re seeking expressions of interest from MS Australia – ACT/NSW/VIC clients was nominated by MS Australia who’d like to become an MS Ambassador. In NSW and the ACT, a number for the 2013 Evelyn Nicholson of vacancies exist for the right people to join the Ambassadors team in this Award for International Caregiver, esteemed and dynamic program. organised by the MS International To find out more or to register interest, please call Stephen Papadopoulos on Federation’s People with MS (02) 9646 0600 or email [email protected] Advisory Committee. Although the award was won We would like to thank the following by Maurice Maso, of Belguim, Roll of Honour community members who helped raise who’s been caring for his wife funds for MS over the past three months: for 27 years, Doug was pleased to have been nominated. He l Emily de Groot – sponsored haircut l Jill and Mike Budden – opened estimates that over his years l Laura Tangey and the Footie Gals – their garden to the public of providing massages at MS Amphlett Cup l The Australian Institute of Music – a series of music concerts Metropolitan North, in Sydney, l The trio of Malcolm McKinnon, he’s worked on about 1,000 Marg Hayes and John Kerby – l Chris Bayliff – competed in the the Alps to the Tropics Tough Bloke Challenge people who have MS. bike ride l Janette Campbell – a cookie “I spent my career in finance l Ralph and Peter Kiel – the Perth to and muffin bake and law, so it’s great to do Ballarat bike ride l Tobie O’Shea-Anderton and Connor something hands on,” he says. l Holy Script Primary School – Moore – the North Face “People come to me in pain, and a fun run 50 Kilometre ultra-marathon they really appreciate it when I l Our Lady of the Rosary Primary l Himanshu Dua, Katherine Weeks, can help them. I find it rewarding.” School – Wear Red day David Torossian, Jillian Nalty, Doug was recommended for l Jen Straughen – a Mothers’ Corinne Binat, Andrew Smith, the award by Joanne Tuckerman, Day lunch Ross Baker, Selena Barkley and Peter Walsh – competed the receptionist at MS Australia l Flemington RSL – a trivia night in The Sydney Morning – ACT/NSW/VIC’s North Ryde l Sydney Grammar School – three Herald Half Marathon office. “You can see the difference special events on clients’ faces when they leave l Mark Colman and Team Mudup4MS Doug’s treatment,” she says. – Tough Mudder
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Meghan McLean with her husband Drew and “You’re not alone” son William. When she discovered that a friend also had MS, Meghan McLean was inspired to become a Peer Support Volunteer.
I’m 29 now, but I was 22 when I experienced my first relapse – I had pins and needles in my fingers, hands and arms, and they interfered with my ability to use those parts of my body. It was three years before I had another episode, and that time, my feet and legs were affected, and I was officially diagnosed in 2009. During those three years, I did some research into multiple sclerosis, and by the time it was confirmed, I’d come to understand what the condition was a bit more and I’d started to get my head around it, but I took a fair while to really come to terms with it. About a year after I was diagnosed, we had some friends around for a barbecue, and a few days later, one of the girls phoned me. She said she’d seen my MS medication in the fridge and that she’d been diagnosed with MS three years earlier. I was surprised to hear it: she was a young professional and intensely private, and I was one of only a handful of people she’d told. That was a powerful experience for me. My friend and I were able to support each other, and I realised how much turmoil people who are newly diagnosed can be in, especially young women, who are already dealing with all that life throws at us – evolving relationships, flourishing careers and new families can be a huge challenge for anyone, let alone when you’ve got MS in the mix as well. Before I became pregnant, I began thinking about volunteering to provide peer support, but I had to wait until earlier this year to undergo the training. William is my first child, and he was born in February. I’m on maternity leave from my position as a language teacher at a high school, and I’m hoping to return to work part time at the start of the next school year. Meanwhile, now that I’ve completed the Peer Support Volunteer training, I’d like to be able to support other young people who have MS. The training was a great experience. It encompassed subjects such as communication and dealing with conflict, and included lots of helpful tips and practical advice, not to mention a lovely couple of days’ sharing experiences and getting to know the other volunteers. It’s great to know there’s support available and that you can talk to someone, with some anonymity. I urge anyone who’s newly diagnosed to seek peer support, because you’re more able to process all that’s happening in your life. Even if you speak to a Peer Support Volunteer once or twice only, you’ll find it helpful to know you’re not alone. n
For more information about the Peer Support Program or to find a support group near you, please call MS Connect on 1800 042 138.
26 intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 intouch 27 The Esperanza group enjoys a catch-up.
Are there any other activities? Support Sometimes we visit people in their home, and we’re planning to go to the Uruguayan Social Club soon.
group profile Do you have any advice for people who are considering joining a support group? Mabel Castineira helped establish and later I’m a positive person, and I find pleasure in being with other re-form Sydney’s Esperanza Peer Support people who are positive. When you get hit with MS, you tend Group for Spanish speakers. The group to withdraw from society, but when you join a group, you find hope and raise your self-esteem, because you’re doing members meet at the Casa Community something positive. However, if you join a group, be ready to Service Centre, in Fairfield Heights. talk, because you’ll make new friends, and those friends help you to never give up on yourself. n How was the group established? About six years ago, the MS organisation was looking for people who spoke Spanish and had MS, and was put in Electric Wheelchair Scooter contact with me. I arrived from Uruguay in 1978, and I was diagnosed in 2003, when I was 40, but I had symptoms Portable in Car Boot before that. I’m mobile, but I have fatigue and tightness around my body, and some numbness. Easy Rider 17 km range The first group was established in August 2008 and ran “SCOOT IN BOOT” Wide seat & for about three years, but the numbers dropped off and retractable arm rest it closed. This year, I decided to reopen it. I contacted the MS organisation, and we started again. We have about 13 regulars, and they include people with MS and their family members. We are Spanish speaking, but we conduct the meeting in both English and Spanish. Quick Getaway! How have you found the group to be helpful? No tools needed I don’t have visible symptoms. I drive and I walk, and when Easy as an umbrella I complain about not being well, people don’t understand. click 1-2-3 At the group, I feel as though I’m understood. You can ask PULL APART questions, and people support you, but it’s more than that: LIGHT WEIGHT Heaviest part it’s a social event. We laugh, we talk and we eat, but the main only 13kg thing is we feel we’ve been listened to.
When does the group meet? Foldable Airport Friendly On the first Friday of the month, from 10.30 to 12 noon, for Total weight 30kg morning tea. Sometimes we’re still there at 2pm! As long as Battery pack easily detached there’s someone who wants to talk, and no one else requires the room, we talk. The word ‘esperanza’ is Spanish for T.M. 1300 657 818 portable mobility systems ‘hope’ – we hope that in the future, scientific research www.libertymobilityaids.com.au will lead to a cure for MS.
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Liberty_132x88.indd 1 3/07/2012 4:06:48 PM FOCUS ON MS MS Awareness Month highlights May is MS Awareness Month, and here’s a snapshot of some of the fantastic events that took place throughout our regions.
Comedian Tim Mass media Ferguson and two entertainers at a Megan Healey’s fundraising journey generated an amazing fundraising dinner. amount of media interest in MS. (See her full story at right.) Here are some highlights of Megan’s campaign: • During the lead-up to Megan’s mow-down, she was the subject of a story on Channel 7’s Weekend Sunrise. • Megan’s children – Sydney, 12; Leilani, 10; and Finlay, seven – were part of a panel on SBS’s Insight program about young carers. • On the day of Megan’s departure from Melbourne, she was the subject of a live cross on Channel 9’s Today Show, and her arrival in Sydney on World MS Day was also covered. Activities shine light • Megan’s departure was also covered on ABC News 24, ABC Breakfast News, ABC1 News, Channel 10 News and The Kiss Goodbye to MS (KGTMS) campaign was SBS News, as well as in The Herald-Sun, on the Triple M launched in Sydney’s CBD on 30 April and ran throughout (Melbourne) breakfast-radio program with Eddie McGuire May, culminating in World MS Day on 29 May. This is the and Mick Molloy, on 3AW radio, on 774 ABC radio and in fourth year of KGTMS, and the challenge was to wear, dare That’s Life magazine. and share all things red during May in order to increase the • En route, Megan generated media attention, including for community’s understanding of MS and encourage people to many regional newspapers and in the form of regional- raise funds for research and services. radio interviews such as for 3BA Ballarat, MyMP with In Sydney, the fundraising events included a dinner hosted Glenn Ridge, ABC Goulburn Murray and ABC Illawarra, by Network Ten newsreader Sandra Sully at the China Doll and TV interviews on WIN Gippsland, WIN Wagga, Prime restaurant; in Melbourne, comedian Tim Ferguson hosted 7 Albury and Prime 7 Wagga Wagga. a dinner at the Red Spice Road restaurant; and Brisbane’s • Megan’s arrival at the Westmead Millennium Institute was fundraising dinner was held at Gianni’s Restaurant. Lunches, covered by media representatives from Channel 9’s Today trivia nights and individual fundraising events were also held. Show, ABC TV, The Daily Telegraph and local Parramatta The corporate community joined in by using red lighting papers, and she was interviewed by Chris Smith on to light up public buildings throughout May. In Brisbane, the Radio 2GB, by James Valentine on 702 ABC and on night sky was painted red courtesy of the Conrad Treasury ABC Central Coast. Casino, King George Square, QPAC, and the Brisbane Convention and Exhibition Centre. Melbourne’s GPO, Canberra’s Telstra Tower and Hobart’s Wrest Point Casino also glowed red. Other media attention On 23 May, 30 people attended a health-professional • The fundraising dinner held at Sydney’s China day at The Nerve Centre in Blackburn. Presentations about Doll restaurant was covered in The Sun-Herald. MS were given by neurologist Dr Neil Shuey; Dr Elizabeth • The Daily Telegraph featured a story about McDonald, Medical Director of MS Australia – ACT/NSW/ Emma Giunti, a person who has MS. ACT; and Professor Marita McCabe, from Deakin University. • MS Ambassador Jessica Gray was featured On World MS Day, to thank supporters, MS Research in Practical Parenting magazine. Australia hosted a cocktail reception at Kirribilli House, • Comedian Tim Ferguson and author Jillian the Prime Minister’s Sydney residence. The evening was Kingsford-Smith, who have MS, were interviewed hosted by Network Ten presenter Kath Robinson, and Her on Channel 7’s Weekend Sunrise. Excellency the Governor of NSW Marie Bashir was guest • World MS Day also attracted media coverage, of honour. At the time of writing, more than $726,000 had including an appearance on Channel 10’s been raised from KGTMS activities. To see highlights, The Project by Tim Ferguson. go to www.kissgoodbyetoms.org
28 intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 intouch 29 Hogan’s Heroes raised more than $46,000.
Megan Healey is presented with $10,000. Megan’s mow-down Even in her wildest dreams, Megan Healey couldn’t have imagined the attention her daring fundraising adventure ‘Megan’s Great Mow-down’ would attract. Walk and Fun Run exceeds target Her journey on a ride-on mower The MS Walk and Fun Run took place throughout Melbourne, Sydney and from Melbourne to Sydney Canberra on Sunday, 2 June, and its fundraising goal was smashed: more became a highlight of Kiss than $1.7 million – and counting – was raised! Goodbye to MS. The weather varied from torrential rain to winter sunshine, but the spirits of the Megan, 43, visited 25 more than 11,400 participants weren’t dampened. towns over 16 days. Her family The Melbourne MS Walk and Fun Run started out cold and wet, but just as accompanied her for part of the it kicked off, the clouds parted and the sun started shining. Tim Ryan, 30, was among the participants. The former VFL footballer, who now lives with MS, journey, and she was also helped walked with his wife Leanne and new baby daughter Quinn. Although Tim by an enthusiastic crew of friends. had to stop every 20 metres, he persevered for four hours in order to During her stop in Canberra, complete the five-kilometre course. Megan was met by Senator Kate Lundy, Minister for Sport, on Adriana Grasso and her team members raised more than $142,000 – the the lawns of Parliament House highest fundraising amount of any team in the history of the event! Meanwhile, and was also a special guest at Mick Hogan and his 90-strong team Hogan’s Heroes took part for the fourth a fundraising dinner held at the year in a row and raised more than $46,000. Novotel Hotel. Robyn Hunter, CEO of MS Australia − ACT/NSW/VIC, walked with her On World MS Day, Megan’s husband and four sons. “I was impressed with the passion and enthusiasm of mow-down culminated in a everyone who participated,” she says. reception held at the Westmead In Sydney, even though Hyde Park was a muddy quagmire, the participants Millennium Institute, in Sydney. danced to the zumba music and walked in the rain. Highlights included a heartfelt She was greeted by her husband speech delivered by David Galea, an MS Ambassador, and the appearance of Brian and the children along with Andrew Constance, NSW Minister for Ageing and Disability Services, who came her friends and supporters; MS to support Bruce Frost, a constituent who has MS. Meanwhile, the reason that researchers; and Mr Geoff Lee, the Home and Away actor Lisa Gormley ran the eight-kilometre course was that a NSW Member for Parramatta. friend’s aunt has MS. Outstanding NSW fundraisers included the team The reception received a lot members of Camp Saliba, who raised $20,000, and top individual fundraiser of media attention. Lawnmower Nicole Beath, who raised almost $8,700. company Briggs and Stratton Despite some wild weather, the Canberra event had an upbeat vibe as donated to Megan the Ferris participants gathered at Rond Terrace, ready to take the much loved mower she’d ridden, and also bridge-to-bridge route around Lake Burley Griffin. MS Ambassador Beth Wurker told the crowd about her journey with MS, donated a $10,000 cheque to and judged the ‘best dressed’ competition. Beth awarded the individual prize her KGTMS fundraising account. to ‘Gumby’ and the team award to The Randoms. Megan not only captured the Congratulations and thank you to everyone who was involved, whether hearts of Australians; she raised you volunteered, donated, participated and/or fundraised. more than $50,000. For more information about the events, visit www.mswalk.org.au
Social-media success The social-media campaign behind Kiss Goodbye to MS Mottos shared was a huge success: 17,000 friends were made on the For this year’s World MS Day (WMSD), people who are Facebook page! The campaign was led by MS Australia’s living with MS were encouraged to share the mottos Emma Bennett, who encouraged thousands of people to they use to get themselves through the difficult times. engage on Facebook, Twitter and Instagram. The innovative Founded by the MS International Federation, World ‘Photo a Day’ campaign also attracted a huge response, MS Day has been held since 2009, and people from from people who were posting creative photos on Facebook. about 70 countries participate in it. Visitors to the WMSD website were encouraged to share their mottos. Go to www.worldmsday.org to read more. 28 intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 intouch 29 Financial information Employment and super Once you’ve been diagnosed as having MS, it’s important you understand your employment rights and how to access your superannuation if your circumstances change.
Fortunately, under government legislation, employers legislation, employers must keep the job of any worker who must take reasonable steps to accommodate their has a work-related disability open for at least 12 months. employees’ disabilities. However, even in times of Many employers know very little about disabilities and will economic stability, employers occasionally lay staff be happy to help if you tell them about the problem. However, members off. If you have a disability or chronic illness, if your employer won’t help, you might have a legal claim. you have to be aware of your rights. Anti-discrimination and workplace-relations laws are such that The ‘reasonable steps’ that employers must take to your employer might be forced to either alter your working accommodate their employees’ disabilities might take conditions or pay you compensation. the form of: If you’re considering giving up work because of • changing your workstation by providing you with a your health problems, you have to obtain advice before supported chair, improving the air conditioning or you resign, because the way you cease work can affect moving your work area to the ground floor your entitlements. • allowing you to take time off work or to obtain medical treatment Early access to super • changing your work duties, in some circumstances If you’ve stopped work, you might be going through a • allowing you to work part time. period of financial difficulty. Most superannuation funds have If you’re considering reducing your work hours, make a policy of allowing you to apply for access to some of your sure you obtain some advice about how the reduction will super so you can help yourself through those times. However, affect your superannuation. the rules for access can be complicated and can affect your Legally, your employer doesn’t have to offer you another other entitlements. job, although he or she can’t terminate your employment for If you access your superannuation on the grounds of
at least three months. Under some Workers’ Compensation ‘financial hardship’ and are younger than the ‘preservation Thinkstock/Jacob Wackerhausen
30 intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 intouch 31 age’ – between 55 and 60 – you might pay a significant Terminal illness amount of tax on any benefit you withdraw. The amount of Under the legislation, super-fund members who’ve been tax can be up to 21.5 per cent. If you’ve ceased work as diagnosed as being terminally ill are eligible to access all their a result of illness or injury, however, you might be able to superannuation tax free. ‘Terminal illness’ means that the access your super because of ‘permanent incapacity’. A member has fewer than 12 months to live. superannuation benefit that’s released for that reason is In many superannuation funds, terminally ill members can taxed at a concessional rate, and a significant portion of also claim the insured death benefit even though they’re still the benefit is tax free. alive. The insurance benefits are also tax free. n Any amount you’ve taken out of your super fund won’t usually count towards the income test for Centrelink payments, and in most cases, your payments won’t cease Do you need help? because you have that amount. Any amount you take out Maurice Blackburn Lawyers has set up a free of the super fund does count towards the ‘assets test’, advice service. If you’d like to speak to an and if you access an amount that’s larger than $192,5001, expert before you access your superannuation, you might be above the Centrelink assets threshold, and or if you have any other questions about Centrelink will cease your payments for a time. superannuation or insurance, call 1800 810 812 to access the free advice and help. Insurance benefits You might also be entitled to claim some significant insurance 1This figure ($192,500) is for single people who own their home. Other figures benefits. Most superannuation funds offer automatic ‘death are applicable in the case of couples and people who don’t own their home. and disability’ insurance benefits that can be very valuable, The figure was current as in July 2012.
especially if you have a long-term illness or injury. You need This article was supplied by Josh Mennen, Senior Associate in Maurice Blackburn to note that often, because fund members have accessed Lawyers’ superannuation and insurance practice.
their super, their insurance cover under the policy ceases. Disclaimer: Individuals shouldn’t use the information in the article as legal advice; It’s extremely important you obtain advice about this aspect they should seek professional advice as they require. before you decide to access your super. In most superannuation funds, the insurance cover comes in the following two forms: • Death cover, which can sometimes be claimed if you’re • Nutrition diagnosed as having a terminal illness • Lifestyle • Total and Permanent Disability, and Income Protection: Medicine Income Protection – or Total and Temporary Disability • Multiple Sclerosis insurance, as it’s sometimes called – usually entails a monthly benefit that’s payable for two years from the date • Mindfulness you ceased working, but minus the waiting period. Some • Cancer Income Protection policies are payable for five years, until • Resilience you turn 65, whereas others are payable until you die. • Spirituality • Carer Support Redundancy Many people believe that if they ceased work because they were made redundant, they’re not entitled to claim a disability Profound Healing - benefit, but that belief isn’t necessarily sound. Many people Sustainable Wellbeing who are sick or injured when they’re made redundant are 23 – 24 November 2013, entitled to lodge a claim for disability benefits through either Conference Pullman Hotel Melbourne, their superannuation fund or their insurance policy. If you Albert Park think you might be made redundant, you should obtain advice about your superannuation entitlements, because the Explore new pathways to living well with MS way in which you cease work, as well as any agreements *Latest research A unique event for anyone you sign when you cease working, might affect your super *Evidence-based therapies affected by MS or cancer, their *Practical tools & techniques carers, health professionals or insurance. Some insurance policies have a rule whereby *Inspiring stories and the public interested you’re prevented from claiming a disability benefit if you’ve in general wellbeing and accepted redundancy. Although that rule is unusual, before BOOK NOW prevention of illness. www.gawler.org you sign any agreement or accept redundancy, you should The Gawler Foundation have an expert examine the agreement so you can be sure Call 1300 651 211 A not for profit organisation
Thinkstock/Jacob Wackerhausen that your superannuation entitlements won’t be affected.
30 intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 intouch 31 HEALTH+WELLNESS Take charge of your health The hot weather is on its way, so consider investing in garments to keep cool.
Your MS symptoms can be exacerbated if your body temperature increases even slightly. The body-temperature
South Eastern Sydney Local Health District increase can be caused by a fever, exercise or the
ambient temperature; in fact, a simple way in which you
Multiple Sclerosis Clinic can experience a body-temperature increase is to spend time in a room that’s heated or go for a walk on a hot day. Thankfully, when your body cools down, the symptoms usually settle. However, most people are unable to spend every hot day in an air-conditioned room, so it’s worth considering buying a cooling vest, a cooling hat or a cooling wrap for your neck, head or wrist.
Cooling vests For an example of how the three types of garment work, let’s take a closer look at cooling vests. They come in a variety of styles, and for some of them you have to freeze the components whereas others have to be soaked in water. In helping to address the healthcare needs of people Most vests that require soaking are made from wool or with Multiple Sclerosis (MS) living in South Eastern micro-fibre and feature a non-toxic gel, which holds water, Sydney and Illawarra Local Health Districts, the SESLHD whereas the freezer-style vests hold cool packs. has opened a MS Clinic at Prince of Wales Hospital (POWH). To understand the principles of a water-soaked vest, you might like to read an explanation of the thinking behind the The MS Clinic is dedicated to the diagnosis and long-term E-Cooline cooling vest. This vest contains a ‘high-tech’ fleece care of patients with MS and related disorders, and utilises that absorbs up to two litres of water. The vest is worn over the extensive multidisciplinary services available at POWH. regular clothing, and the fleece is capable of binding water within seconds so there’s no wetness or drop formation The MS Clinic is run under the direction of A/Prof Arun Krishnan, on the quick-drying outer fabric. In high temperatures, the Consultant Neurologist, Prince of Wales Hospital who has a special interest in Multiple Sclerosis and is currently fleece releases the water through evaporation, cooling the involved in related research. body like a natural air conditioner. This type of vest can be used in foundries, glass plants and other hot working environments but can also be used by people who have MS Contact details: so they can enjoy their daily life. The advantage of this type Institute of Neurological Sciences of vest is that tap water is used for it, the vest is lightweight, Prince of Wales Hospital and the manufacturer claims that the cooling effect is long Level 2 High Street Entrance lasting. Also, because the cooling mechanism is based on Randwick NSW 2031 natural evaporation, the vest doesn’t have to be chilled in a refrigerator or freezer. Fax all referrals to A/Prof Arun Krishnan: (02) 9382 2428 Other options For appointments phone: (02) 9382 2414 Cooling hats and accessories such as neck, head and wrist wraps generally work according to similar principles. The All patients are bulk billed. hats can range in style from caps to hard-hat liners, but most contain a fleece or polymer gel you have to soak in water. Low waiting times. Most neck, head and wrist wraps also have to be soaked. n Email: [email protected] https://www.sesiahs.health.nsw.gov.au/MS/ For more information Call MS Connect on 1800 042 138 for information Once a booking is made, about cooling garments. patients will be sent a letter with appointment details. For information about the E-Cooline cooling vest, go to www.e-cooline.com.au
32 intouch spring 2013 www.msaustralia.org.au/actnswvic HEALTH+WELLNESS Ideas for exercise
Spring is a great time for improving your fitness, so consider these options and get started before the heat sets in.
It’s widely accepted that people who have MS benefit from people who have MS are cautioned to regulate their physical exercising regularly because it can lead to improvement in activity. “Don’t follow the mantra of ‘No pain, no gain!’” Tracy strength, mobility, balance, bowel and bladder function, says. “Listen to your body, because if you push yourself to mood, and fatigue reduction. However, fatigue comes exhaustion, you might feel fatigued for days afterwards.” with its own problems, because you might have trouble Tracy advises that if you exercise in the morning, it’s contemplating heading to the gym when you can barely reasonable to expect to feel fatigued that afternoon. “But drag your head off the pillow. if you still feel fatigued the following afternoon, you’ve When the problems to do with heat sensitivity, stiffness, done too much. I’d recommend breaking up your tremors and issues of balance and mobility are added to the exercise – for example, if you’ve been exercising for situation, it’s easy to understand why the last thing you feel an hour, consider doing 30 minutes in the morning and like doing is exercising. 30 minutes in the afternoon.” “One of the secrets to engaging in regular physical activity It’s important not to allow symptoms such as fatigue and is to find something you enjoy doing,” says Tracy Martinuz, mobility problems cause you to stop exercising. “Exercise Exercise Therapist with MS Australia – ACT/NSW/VIC. “That is a good mood lifter. If the activity includes a class or a way, you look forward to the activity rather than view it as club meeting, it becomes a social activity, which is great for being a chore.” preventing or easing depression,” Tracy says. In general terms, if your chosen activity doesn’t cause Following are outlines of some exercise options you your symptoms to worsen, it’s probably suitable. However, mightn’t have thought of.
Aquaerobics Canoeing and kayaking Many people who have MS find If you love water, taking to it in a canoe that water-based exercise classes or kayak can be a wonderful way suit them better than exercising on of enjoying the great outdoors and land. Being in water not only entails Bowls getting some exercise. Both sports a natural resistance that can lead to There’s a lot to love about this sport, suit people who have a disability, improvement in aerobic fitness and because it’s a low-impact form of because everyone is required to wear strength development; it’s gentle on exercise undertaken in an environment a buoyancy aid, and you can engage joints. Heated pools mightn’t suit you that entails an opportunity for social in them with family members or if you’re prone to heat sensitivity, interaction. It’s also a sport in which friends. Both sports have a variety of but if you go in a non-heated pool, people who have a physical disability options, from entering competitions to you can stay cool, especially during can compete with able-bodied having pleasurable days out on rivers. summer. If you do go in a heated pool, competitors. Changes to the rules Australian Canoeing is the national check whether it’s regulated to maintain aren’t required, and competitors organisation that’s responsible for a temperature of between 25 and 34 can compete on either normal grass promoting paddle sports. Visit www. degrees Celsius. or a synthetic surface. canoe.org.au/ to find out about clubs. Thinkstock/Georgiy Pashin/Purestock/Roy Palmer/Mike Powell Thinkstock/Georgiy Pashin/Purestock/Roy
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Cycling Handcycling This is another form of exercise you You use your arms to power a can enjoy with family members or handcycle, but apart from that friends. Many public parks and scenic requirement, you can use a handcycle areas have bikes for hire so you can in the same way you use a bicycle. try out the activity before you spend A wheelchair can be converted by money on a bicycle. People who have attaching gears and handlebars, Pilates a balance or mobility problem can which you use in a push–pull This form of exercise therapy was opt for a bike that has wider wheels, movement. You not only get developed by Joseph Pilates, who or a trike (tricycle); in fact, London outdoors; you get a cardiovascular designed it for people who acquired Paralympic gold medallist Carol workout. For more information, go to a disability during World War II. Cooke rode a trike for exercise and the Cycling Australia website, www. The aim is to use slow, repetitive pleasure long before she took up cycling.org.au, and look under the movements to increase core para-cycling competitively. ‘Get involved’ tab for ‘Para-cycling’. strength, muscle tone and flexibility.
MS Aust Intouch Mag 210 x 140 2013 0725 OL.pdf 1 25/07/2013 11:49:03 AM
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Martial arts These types of activity entail a variety Swimming Tai chi of disciplines such as judo, karate, Water entails bodily support, so Although this is a martial art, it’s worthy kung fu and tae kwon do. They’re for swimming can be suitable for people of separate inclusion because it’s a helping build strength and coordination who have MS. It’s also a form of gentle form of exercise and meditation and can lead to improvement in exercise you can do alone, or you can that can lead to stress reduction and self-discipline and concentration. join a club and swim competitively. balance improvement. n
Find out more Wheelchair Sports in Australia provides information about various sports such as bowls, cycling, swimming and table tennis. Visit its web site, www.sports.org.au MS Connect can provide you with information about various exercise groups located in your area. MS Aust Intouch Mag 210 x 140 2013 0725 OL.pdf 1 25/07/2013 11:49:03 AM
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www.msaustralia.org.au/actnswvic spring 2013 intouch 35 HEALTH+WELLNESS Spotlight on: sex and intimacy
Sexuality and intimate relationships have a significant role in the quality of your life; however, sexual functioning can be difficult because of MS symptoms.
Sexual connection and emotional intimacy are the glue These feelings can be complicated if the person’s that keeps a relationship together, according to Dr Gary circumstances change. “Disability can lead to a Fulcher, a Clinical Psychologist who works with people person’s dependency on other people for his or her who have MS. “The importance of intimacy cannot be personal care. If the partner provides the care, it can emphasised too much,” he says. “It makes us human.” be very difficult to separate the role of carer from that Meanwhile, Dr Elizabeth McDonald, Medical Director of intimate lover. Also, people with MS who have carers of MS Australia – ACT/NSW/VIC, points out that an and providers of nursing and domestic services intruding MS diagnosis can be the trigger for reactions of grief, into their home can be left feeling exposed in all areas of anxiety and depression, which can lead to a lowering their life, and have little private time.” of self-esteem and reduction in self-confidence. “These Gary explains that people who have MS and who need feelings can cause reduced sexual interest and personal care might find they receive a lot of ‘functional’ withdrawal from sexual activity. People with MS can touch. “An example of functional touch is when another find it difficult to see themselves as being ‘sexual’, person applies sunscreen to your face. That type of touch that is, having sexual thoughts, desires and needs, is very different from intimate touch, and yet for a person and at the same time, they identify with the role of a with MS, functional touch might be the only touch they person who has a chronic illness.” get; they miss intimate touch, which is about connecting Thinkstock/Wavebreakmedia Ltd/LuminaStock/Monkey Business Images Ltd/ iStockphoto Thinkstock/Wavebreakmedia
36 intouch spring 2013 www.msaustralia.org.au/actnswvic HEALTH+WELLNESS with another person on a soul level.” Although intimate touch can be non-sexual – for example a hug between a parent and child – sex is always an extension of intimate touch. “Even if the capacity for sexual contact diminishes, the need for intimate touch should be sustained,” Gary says. Elizabeth recommends that people with MS who experience sexuality problems allow themselves time to assess their overall situation and to feel confident about communicating their difficulties to the people who are close to them. “Deciding on a time and a peaceful setting to talk about problems of sexuality helps to create an atmosphere of mutual commitment. It’s important to be gentle and express feelings without blame or accusation. Both people with MS and their partner should explore the areas of concern slowly and listen to each other carefully, because misunderstandings and resentment are frequently the result of poor or non-existent communication. Remember that sexuality isn’t about physical intercourse only; couples can gain, and give, sexual pleasure by creating special times, places and rituals. This aspect takes time, effort and nurturing.” Gary points out that sexual activity encompasses a wide range of behaviours, including kissing and Deciding on a time and a caressing, erogenous stimulation, oral sex, and peaceful setting to talk about penetrative sex. “Disability might cause a reduction in the person’s capacity to do some of those things, problems of sexuality helps but some can be maintained.” By way of an example, Gary explains that although to create an atmosphere of sensation in the clitoris or penis might diminish, mutual commitment. introduction of a sexual aid such as a vibrator might trigger orgasm. “If the couple are going to use that type of aid, the relationship has to be an intimate one that Problems that can arise includes good communication.” are outlined as follows: Erectile dysfunction: Although this can easily be identified in men, it can also affect women, whereby diminished blood flow to the clitoris can mean they require greater stimulation in order to achieve orgasm. Treatments for men can range from drugs to injections or penile implants. Speak to your general practitioner, who might refer you to a specialist such as a urologist or an andrologist.
Bowel and bladder problems: If the person who has MS is worried about losing bowel or bladder control during sex, he or she should be sure to evacuate before having sex. Stress can also be removed if the bed is protected with plastic sheeting or towels. Consult an MS Continence Nurse for advice.
Positioning difficulties: Sex can be made challenging because of increasing disability, along with tremors and spasm. Communication is essential so that the sexual partner knows what to do to ensure that the person who has MS is comfortable. In fact, many people can find sex so challenging they give up. However, maintenance of closeness and intimacy is worth the necessary effort in persevering.
www.msaustralia.org.au/actnswvic spring 2013 intouch 37 HEALTH+WELLNESS
Gary recommends that both partners approach sex with a sense of humour. “It’s essential in a good relationship, because it can be common for the intimacy of sex to be interrupted by a challenge such as a spasm. When that happens, try to return to the intimate connection as soon as possible.”
If you’re single When single people who have MS meet a potential partner, one of the key decisions they have to make is whether to disclose that they have MS. Gary Fulcher, Senior Clinical Psychologist with Returning to the connection can be achieved by way of MS Australia – ACT/NSW/VIC, recommends they other forms of intimate behaviour such as cuddling, kissing, make the disclosure before the relationship becomes holding, stroking and massaging. “Be mindful during those intimate. “It’s much better to disclose that you have moments: focus on the experience of holding each other, MS than to risk having your body fail you during a such as the warmth, the smell and the human closeness.” moment of intimacy,” he says. “If you’ve discussed Elizabeth says there are many reasons to feel positive, the fact that you have MS with the person before because due to increasing awareness of the effects of MS you’re intimate, he or she will know what to do.” on sexuality, the management and treatment options that Gary recommends providing the partner with are available have greatly improved. She advises people who information such as in the publication entitled MS have MS to seek help from health professionals. “Although in Focus: Intimacy and sexuality, published by the bringing up the topic can be difficult and embarrassing for Multiple Sclerosis International Foundation. the person who has MS, it can also be so for some doctors Meanwhile, even though people mightn’t have and health professionals.” a partner, they need intimacy, and using sexual It’s important to find an MS-healthcare provider with whom surrogates is a way of achieving connection. one feels comfortable, or to seek a referral to someone Scarlet Road, a documentary film released at who specialises in this area. It can also be helpful to see the the end of 2011, featured the late John Blades, a healthcare professional together as a couple and to bring Sydney man who has MS. It was an examination pre-written questions. of use of sexual surrogates by people living with “Sexuality is an important aspect of human life and must a disability, and featured a sex worker from the not be neglected when the impact of MS on an individual is Touching Base organisation, the members of which being considered,” Elizabeth asserts. “Increasing awareness help people who have a disability and sex workers and acknowledgement of the effects of MS on sexuality have connect with each other. To contact Touching Base, led to great improvement in the management and treatment go to www.touchingbase.org/ options that are available for people who have MS and who are experiencing difficulties in this area.” n
Seek help If sexual-functioning problems are causing stress in your relationship, seek help from the following organisations: ASSERT The Australian Society of Sex Educators, Researchers and Therapists: • The NSW branch can be contacted via www.assertnsw.org.au/ • The Victorian branch can be contacted via http://sexlifetherapy.com.au • The national organisation can be contacted via http://assertnational.org.au/ Multiple Sclerosis International Foundation For a copy of the publication entitled MS in Focus: Intimacy and sexuality, visit www.msif.org/about-us/communicating-ms/ms-in-focus-magazine/intimacy-and-sexuality.aspx MS Connect: Call 1800 042 138. Thinkstock/Ryan McVay/mila-apid
38 intouch spring 2013 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 available for loan, and you access them if you have a computer and are connected to the internet. E-books can be read on a computer, an Living well with MS: Sink into sleep: A step- You don’t look sick! Lifestyle, diet and by-step workbook for Living well with invisible e-reader or a smartphone. complementary therapies reversing insomnia chronic illness As is the case with lots of technology, not all by the US National MS Society by Davidson, J. by Selak, J. and Overman, S. Website: www.media-server. Demos Health Demos Health e-books are compatible com/m/p/4yebgxno with all e-readers. Insomnia can be a serious This book is co-authored The e-books we have The focus of this webcast is problem for individuals, their by Joy Selak, who’s purchased are not on what ‘living well’ means family members and their been living with several compatible with Kindles to people who are living community. In this book, chronic illnesses since the or some other proprietary with any type of MS. Before Dr Davidson describes the late 1980s, and Steven e-readers, but they the webcast occurred, the biology that underlies sleep Overman, Professor of can be read on most moderator received more processes and the risk Clinical Medicine and Division other e-readers and on than 1,000 questions from factors for insomnia, and Chief of Rheumatology at the computers, iPads and interested people who addresses factors that have University of Washington’s many smartphones. have MS, and many of the an impact on sleep, such as Northwest Hospital. If you would like to questions are explored during chronic pain and depression. The book is divided access our e-book the discussion. The focus of the into four phases: ‘getting collection, please contact The issues discussed are book is on using non- sick’, ‘being sick’, ‘grief the MS Library. as follows: pharmacological treatments and acceptance’ and ‘living for insomnia, but Dr well’. Each section includes • Neuro-rehabilitation Davidson also outlines the stories written by both the On the shelf strategies benefits and disadvantages authors so that readers get • The many benefits of sleep medications. the perspective of the patient Fighting fatigue in multiple of exercise The topics discussed in and the physician. sclerosis: Practical ways • The importance of the chapters are as follows: The authors discuss the to create new habits and increase your energy managing depression following topics: by Lowenstein, N. • The value of evidence- • Will this book help you? Demos Health based research • What is insomnia? • Pills, procedures This book was reviewed as • Nutrition • What type of insomnia do and paperwork an e-book in the Spring 2011 • Managing cognitive you have? • ‘Disabled but not invalid’ issue of Intouch, and we now symptoms • Things to take care of • Listening to your have print copies available right away body and finding your for loan. The webcast concludes • The essential elements of own balance Fatigue is one of the most with a discussion about sleep therapy • Taking control of your common symptoms of MS the challenges involved in • What to do with your mind own wellbeing and can have a huge impact managing progressive MS. • Maintaining your progress • Learning to be honest on the quality of life of people about how you’re feeling who have MS as well as on Dr Davidson practises their family. The goal of this book is to assist people who clinical psychology within a The book also includes have MS to learn techniques primary healthcare team. a list of useful resources. for helping themselves have more energy to do the To borrow books or for help in accessing online resources, please either call the MS Library, located activities they enjoy. in Blackburn, Victoria, on (03) 9845 2809 or email the Library at [email protected] Contact your local bookshop if you’d like to buy a copy of a printed book.
PB intouch spring 2013 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2013 intouch 39