INTOUCH Spring 2013
The official magazine of MS Australia – ACT/NSW/VIC
Editor: Toni Eatts Publisher: Multiple Sclerosis Limited Website: www.msaustralia.org.au/actnswvic ABN: 66 004 942 287
Frequency: Published quarterly in March, June, September, December Advertising enquiries: Tel: (02) 848 1316 Email: [email protected] Design: Byssus Design, (02) 9482 5116 Printing: Webstar Print
MS Australia – ACT/NSW/VIC ACT Gloria McKerrow House 117 Denison Street Deakin ACT 2600 Tel: (02) 6234 7000 Fax: (02) 6234 7099
NSW The Studdy MS Centre 80 Betty Cuthbert Drive Lidcombe NSW 2141 Tel: (02) 9646 0600 Fax: (02) 9643 1486
Victoria The Nerve Centre 54 Railway Road Blackburn VIC 3130 Tel: (03) 9845 2700 Fax: (03) 9845 2777
MS Connect (Information and Services): 1800 042 138 (free call) Regional offices: Visit www.msaustralia.org.au/actnswvic and click on ‘Contact Us’ Privacy Policy: Visit www.msaustralia.org.au/actnswvic for our full policy document ISSN: 1833-8941
Disclaimer: Information and articles contained in Intouch are intended to provide useful and accurate information of a general nature for the reader but are not intended to be a substitute for legal or medical advice. Multiple Sclerosis Limited is not recommending medical or legal advice and readers must seek their own medical or legal advice as may be appropriate. MS Australia – ACT/NSW/VIC is a not-for-profit organisation that has been supporting and helping people with multiple sclerosis (MS) since 1956. Through an extensive network of centres, branches, support groups and health services, the organisation provides specialist programs to people with MS, their families, carers, friends and healthcare professionals. © Multiple Sclerosis Limited 2013
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CEO’S MESSAGE
Welcome to the Spring 2013 issue of Intouch. First, I’d like to acknowledge the legacy and tremendous contribution made by Jeremy Wright, the founding CEO of MS Research Australia, and to warmly welcome Dr Matthew Miles, previously from the University of NSW School of Medicine, to the role. Matthew is now leading the high level of research activity and the record level of research expenditure. We’re firmly committed to ultimately finding a cure for MS and to eliminating the disease’s impact on the lives of individuals and families. Until that day, we won’t rest; we’ll push ahead. Until then, our organisation will continue to exist to improve lives and eliminate the compromises imposed on them, and we’ll be sharing examples of how the changes are already leading to improvements in people’s lives. A number of important developments have occurred since the last issue of Intouch. In particular, from 1 July 2013, people who have a disability, and their family and carers, have started to move into DisabilityCare Australia (DCA), at four launch sites: the Hunter area of New South Wales, the Barwon area of Victoria, in South Australia for children, and in Tasmania for young people. Importantly, commencing in July 2014, the DCA launch is being extended to Western Australia and the Australian Capital Territory. Our organisation has two launch sites that are demanding our attention, and we’re also not only maintaining our existing services but improving them. This maintenance and improvement are good for people who have a disability, and rest assured we don’t think our work is done – we’re striving to remain abreast of developments. As the details of the scheme unfold, we’ll remain actively involved to ensure that the needs of people who are affected by MS can be met. Our regional staff members will help our clients navigate the new system, and we also want to collect feedback in order to influence any changes that might be required. So be sure to go to page 10 for an update about how DCA is being implemented. Our organisation is at the forefront, not waiting for changes to happen: we’re preparing now for what has already begun. For some years, MS Australia – ACT/NSW/VIC has been offering the MS Employment Support Service (ESS) to clients living in Victoria. The team members are poised to soon be operating in Sydney, and we have plans to expand the service even more. For an insight into the help the ESS can provide, take a look at the ‘MS and Employment’ feature on page 14. It makes for happy reading!
Robyn Hunter CEO, MS Australia – ACT/NSW/VIC
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CONTENTS
FEATURES 10 It’s here! DisabilityCare Australia – the National Disability Insurance Scheme – is open for business. 12 My story: Keep on going Terri Laurence urges people who have MS to become involved in the community. 14 Strategies for work Learn some steps to take so you remain employed. 28 MS Awareness Month highlights Catch up with what happened during the Kiss Goodbye to MS campaign. 30 Financial information: Employment and super What your rights are and how to access your superannuation
MS COMMUNITY 23 Community fundraising: Thank you for your hard work. 24 Volunteers in action: Meet people who are helping to make a difference. 26 Peer support: Sharing the MS journey 27 Support Group profile: The Esperanza Peer Support Group
HEALTH & WELLNESS 32 Take charge of your health: Invest in a cooling vest. 33 Ideas for exercise: Be inspired by these activities. 36 Spotlight on: sex and intimacy
REGULARS 5 Your say 6 News 9 MS insights 13 Q&A 19 MS Readathon and Bequests 20 Events 22 Family and carers 39 New resources
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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
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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.
For more information and to purchase tickets, visit www.msraffles.org.au or FreecallTM 1800 287 367.
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YOUR SAY Thank you for sharing your stories, tips and feedback. We’d love to hear more!
Readathon reminder I noted with interest the story about this year’s MS Readathon in the Winter issue of Intouch. In 1979, when I was in Year 7, I participated in the MS Readathon – see my certificate on this page – so how ironic it is that in 2011, I was diagnosed with MS. I now realise I should have read more books!
Samantha Keir (née Bryant) East Brighton, Vic
Editor’s note: After reading Samantha’s letter, we wondered whether any other readers had participated in the MS Readathon while they were at school and had later been diagnosed with MS. If your experience is similar to Samantha’s, please email us at [email protected]
Book provided self-help I usually find something helpful in Intouch, and the Summer 2012 issue was no exception. I was diagnosed in 2008, but most of my symptoms are of the insidious, invisible type − fatigue, heat intolerance, depression, anxiety, insomnia and, my personal favourite, incontinence. Lately, I’ve been struggling with the depression and anxiety, so when I saw Dr Patricia Farrell’s book It’s Not All in Your Head in the ‘What’s New’ section, I didn’t hesitate to borrow a copy from the MS Australia – ACT/NSW/VIC library. It’s like a huge weight has been lifted from my shoulders. Not only does someone understand what I’m trying to deal with; she also provides some self-help techniques so I don’t have to rely on shoving another chemical into my body. Thank you, Intouch and the MS organisation, for not only bringing this book to my attention but enabling me to borrow it.
Mel Bretherton Point Cook, Vic
Keep your feedback and stories coming in. Next issue’s theme will focus on ‘Parenting and MS’.
Write to us at [email protected] or post your letter to ‘Intouch’ PO Box 210, Lidcombe NSW 1825.
Each reader to have their letter published wins an organic tea and chocolate indulgence pack.
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NEWS
Shop opens in the ACT After many months of preparation, and aided by the new Tuggeranong volunteers, our new MS Community Shop opened in the ACT on 15 July. “It’s an exciting time,” says Ara Levonian, Retail Operations Manager, MS Australia – ACT/NSW/VIC. “We now have 10 shops in Victoria, one in Sydney and one in the ACT. The shop gives the MS organisation a face in the Canberra community, and wherever we have a shop, we have an increase in the awareness of our brand.” The ACT shop is located in the Homeworld Centre at Tuggeranong, and is open from Monday to Friday from 9.30am to 5pm and on Saturday from 9am to 2pm. Beck Holland has been appointed to manage the shop. She supervises a team of 11 volunteers, but confirms that more volunteers are required. According to Ara, “One of the impressive aspects of the ACT shop is the quality of the clothing, shoes, handbags and household items that have been donated so far; however, still more items are needed. By making high-quality merchandise available, we promote ‘word of mouth’ among shoppers, so we anticipate a boost in sales.” Last year, the shops contributed $250,000 to the organisation, and Ara expects the figure to increase as the ACT shop gains strength. “We began with a ‘soft’ opening, and early indications are excellent.”
Ruth wins OAM The founder of our popular MS Singers choir, Ruth Hawkins, has been awarded an Order of Australia in the Queen’s Birthday Honours List. Ruth began the choir at The Nerve Centre, Blackburn, eight years ago, but it’s only one of the voluntary projects she’s involved in. She was awarded the OAM in recognition of her community services for Maroondah, which is the area she lives in. Music is in Ruth’s blood, and she helped her mother start the Ringwood Eisteddfod almost 60 years ago. Now 81, Ruth still organises the annual event. “I’m the fourth generation of a musical family,” she says. “I came in contact with The Nerve Centre when I was helping raise money for a piano for the Centre. When we got the piano, I decided to form the choir.” The MS Singers have about 12 regular members, and Ruth is both choir leader and accompanist. The choir members rehearse at The Nerve Centre every Thursday from 11am to 12 noon and perform in nursing homes and clubs as well as for senior groups. “We’re out performing nearly every week,” Ruth says. “And we get invited back again and again. We’re always seeking new members, and you don’t have to have a good voice to join in the fun!”
MS advocates confer MS Australia (MSA) hosted the National Advocates Conference ‘Championing the MS Cause’
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in Melbourne, in July. The event was the first opportunity for Debra Cerasa the new CEO of MSA, to meet with members of the National Advocates program. “We’re truly blessed that so many hardworking advocates are keeping important matters for people with MS on the agenda of politicians and potential sponsors,” Debra says. The conference featured a range of keynote speakers, including Janine Shepherd, who’s a former winter Olympian and who was once a paraplegic but now not only walks but flies planes, and Carly Findlay, who’s a prominent disability advocate. During the two-day conference, the advocates began fleshing out the priorities and issues that MSA will take forward in advocating on behalf of people who have MS.
Project needs you Research project leaders at The University of South Australia, in partnership with MS Australia, want your help in undertaking research into how Australians who have MS use electricity for medically required cooling. They’ll use the results in order to inform energy policies, including the effectiveness of existing energy concessions. They’re seeking households located within a 20-kilometre radius of Pennant Hills, in Sydney’s north-west. If you choose to participate, a researcher will collect information about your air conditioner and house, and will need your permission to obtain two years’ worth of bills from your energy retailer. If you’re interested, call Dr Frank Bruno at The University of South Australia on either (08) 8302 3230 or 0413 853 257.
New MSRA CEO Dr Matthew Miles has settled into his role as Chief Executive 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. “MSRA has a truly excellent reputation in funding the best MS research that Australia has to offer.” Paul Murnane, MSRA Chairman, says Matthew brings a unique combination of skills to the role: strong business and fundraising experience, marketing and communications expertise, government-relations know-how, and clinical knowledge of neurological and related health issues. For the first 15 years of Matthew’s career, he was a practising veterinary surgeon working in Australia, the UK and Singapore. He then became more involved in the ‘university and not-for-profit’ sector, especially focusing on business management, external relations and medical research. He is an Associate Fellow of the Australian Institute of Management and a graduate of the Australian Institute of Company Directors, and he has an MBA from the Australian Graduate School of Management. Most recently, he was a Director of Strategy, Development and External Relations at the School of Medicine at The University of New South Wales. In that role, he helped raise tens of millions of dollars in donations, pledges, grants and sponsorships for critical medical-research initiatives; indeed, annual fundraising at UNSW Medicine increased dramatically during his almost six years in the role. “I know all too well the devastating impact a disease such as MS can have on people, their family and their loved ones,” Matthew says. “It’s a privilege to have the opportunity to play a part in tackling the MS challenge.”
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MS friends meet In June, staff members and advocates from MS Australia, MS Australia – ACT/NSW/VIC and MS Research Australia made their annual pilgrimage to Canberra to meet with the Parliamentary Friends of MS. The longstanding event is a unique opportunity to educate some of Australia’s key powerbrokers about living with MS. Hosted by Senators Kate Lundy and Gary Humphries, the event was attended by members of parliament who included Andrew Leigh and Mike Symon, as well as Amanda Rishworth, Parliamentary Secretary for Disabilities and Carers. The discussion included topics such as DisabilityCare Australia, and a highlight was Sarah Ross-Smith’s emotional presentation. Sarah is a lawyer and an ACT resident who’s lived with MS for more than 15 years. A thankyou was also given to outgoing Senator Gary Humphries for his years of support.
News from MSAC By Andrew White and Mike Hemingway, Chairs, MS Advisory Council, Victoria and NSW
Have you ever wanted to win the lottery and never have to work again? For those of us in regular work, this can seem attractive. But for many of us who have MS, the possibility of not working seems more of a threat than an opportunity. We obviously need to have a regular income, but in recent years, according to the results of human-resource and psychology studies, having meaningful work is also important for social connection and psychological wellbeing. So, before we abandon work and its benefits, we should seriously consider our options. Some employers are open to enabling us to have flexible working arrangements, or we can think about the experience, skills and knowledge we have and how they can be used in other types of work that are more disability friendly. MS Australia – ACT/NSW/VIC has an employment service through which you might be able to help yourself continue working despite the impact of your MS. In other news, our NSW team members recently held a planning day and are now reviewing the web sites of MS Australia – ACT/NSW/VIC and the national organisation, MS Australia. The aim of the review is to provide feedback about the websites while they’re being improved. MSAC NSW is also working with the Victorian MSAC team to examine carers’ needs. 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 – ACT/NSW/VIC board members and leaders. We’re also examining how the MS organisation might more effectively connect with and meet the needs of people who’ve recently been diagnosed with MS. If you wish to discuss employment or anything else, please contact us via the details below. And remember that by registering at our web site and visiting us on Facebook, you can provide us with a valued perspective we can share with the board, leaders and team members at MS Australia – ACT/NSW/VIC.
Get involved – Contact MSAC at:
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E-mail: [email protected] Telephone: (03) 9845 2794
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. “The change has occurred both internally and externally,” she explains. “Some of the change has been very positive, and some has entailed a unique set of challenges.” The two major changes have been the introduction of DisabilityCare Australia (DCA) – a comprehensive, watershed social-policy reform that affects the disability sector – and a significant increase in charities competing for fundraising. “Both have very real consequences for us,” Robyn says. “Both have an impact on the way we as an organisation approach the future, and for both, our leadership team has been required to analyse the way we’re currently operating. We’ve had to look in detail at the impact the changes will have on people with MS, and to chart a course for the future.” In this strategic analysis, the needs of people affected by MS are always placed as paramount. “The prevalence of MS is increasing at an apparent rate of 4 per cent a year. Also, the practical outcome of the recent National Needs Analysis is identification of a range of unmet needs of people who are living with MS. We have to think differently about the way we’re providing support and care, and we’re making changes and preparing now.” As a result, Robyn and the executive team are positioning the organisation as being a high- quality, MS-specialist organisation providing services that span the lifetime needs of people who have MS, from early symptoms and pre-diagnosis onwards.
Our goal In order to position itself in that way, the organisation has committed to keeping a long-term promise whereby the strategic goal is to deliver more benefit to more people who are affected by MS. Person-centred approaches and funding are good news for people who have a disability, but they mean that service providers must adapt and change. “We’re not waiting for the changes to be imposed,” Robyn says. “We’re at the forefront, preparing now and acting now to ensure that services are not just maintained but improved. We’re aiming to improve our financial strength. As an organisation, we’re working hard to increase fundraising revenue. We’re also revising our operating models to ensure they’re efficient and sustainable, and we’re identifying the areas in which we’ll be championing the needs of people living with MS, by ensuring we remain relevant.” Robyn points out that most clients won’t notice a reduction in services as a result of the changes. “Services might be delivered in a different way, but we want to assure people who have MS that we’ll work with all our clients who are affected, in order to provide alternatives.” However, Robyn accepts that some concern about the changes has been voiced, and she assures our clients that she and the Board are listening to their feedback. “I urge people who
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are concerned to visit our website, on which they’ll find more detail about the changes and who stands to benefit from them. On the website, you’ll find links to other information resources, which are there to help you better understand where we’re headed, and you’ll also find examples of how lives are already improving as a result of the changes.”
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.
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MS INSIGHTS Snapshots of the latest revelations in global MS research.
Potential new treatment Only nine people who have MS were included in the Phase I clinical trial, but the results as published in the Science Translational Medicine journal are promising. In the trial, which was designed for testing the treatment’s safety in humans, the researchers investigated a new treatment that’s aimed at stopping the body’s immune system from attacking myelin. According to the study results, the treatment is safe, and although the patient numbers were too small for proving whether it was of benefit to MS patients in general, the findings suggested that the treatment could be of use in preventing myelin damage. They attempted to ‘re-train’ the immune system of people who had MS in order to specifically prevent the attack on myelin. The team members took blood samples from people who had MS, and separated out the white blood cells. They then attached parts of the myelin protein to the cells and re-injected the modified cells into each person. Applying this technique, they encouraged each patient’s immune system to develop tolerance towards the myelin proteins, and hopefully use the new tolerance to prevent attack. According to study author Professor Stephen Miller, “Our approach leaves the function of the normal immune system intact. That’s the holy grail.” In existing MS treatments, suppression of the entire immune system can lead to side effects. More research into this new treatment is necessary in order to determine whether the treatment is an effective form of MS therapy. For more information, go to www.msra.org.au/us-researchers-find-new-ms-therapy
New oral drug trial The results of a Phase II clinical trial for siponimod, a modified version of fingolimod (Gilenya), have been published in the Lancet Neurology journal. Fingolimod is available for people who have MS. The clinical trial involved 297 people who had Relapsing–remitting MS. After three months of the treatment, the patients who’d been given one of the three highest doses of siponimod – 10, 2 or 1.25 milligrams – had a reduced number of new or newly active lesions each month, compared with patients who’d been given a placebo. The lesions were observed by way of magnetic resonance imaging (MRI). At the highest dose, new or newly active lesions were reduced by 82 per cent. Higher doses also had higher incidences of side effects. The most common of which were headache, slow heart rate and dizziness. Serious side effects included atrioventricular block – impaired electrical flow in the heart, resulting in a slowed heartbeat – that is sometimes seen in people who are taking fingolimod. The researchers reported that siponimod is a promising candidate for development in Phase III studies. The 2 milligram dose seemed to provide the best balance between effectiveness and side effects. This is the dose that’s likely to be followed up in a larger, Phase III clinical trial. For more information, go to www.msra.org.au/phase-ii-ms-trial-promising-results
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 Acta Neurological Scandinavica.
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Over more than two years, the researchers examined sun exposure and vitamin D blood levels in 198 people who had MS and who also completed a questionnaire about fatigue, depression, anxiety and cognition. The researchers found no close association between vitamin D levels and depression but found that the level of depression was lower in people whose vitamin D blood level was higher than 80nM. However, when they took sun exposure into account, they found that this association disappeared, which suggested that sun exposure has a potent effect on depression, independent of vitamin D. In patients who had a higher level of sun exposure, a consistent close association with a lower level of depression was shown. Fatigue levels were associated with neither vitamin D levels nor vitamin D supplementation. Again, however, higher sun exposure was significantly associated with lower fatigue levels. The researchers found no correlations between either sun exposure or vitamin D levels and anxiety or any cognitive measures. They speculated that the biological mechanism behind this finding is mood elevation caused by release of anti-inflammatory chemical messengers in the skin or suppression of melatonin release when the person is exposed to daylight.
Note: For ‘safe sun exposure’ guidelines be sure to visit www.sunsmart.com.au
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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? In DCA’s operating rules, multiple sclerosis is recognised and listed as follows:
• It’s a condition in which there will generally be sufficient evidence that the person has a disability that’s attributable to an impairment. • Generally, there will be sufficient evidence that the impairment is, or is likely to be, permanent.
Therefore, a person who’s affected by MS and who meets the eligibility requirements could become a participant in the scheme and access the supports if his or her MS has resulted in a disability. Alternatively, the person who has MS could be eligible for early-intervention support if intervention is likely to lead to either a reduction in the person’s future needs in relation to the disability or alleviation of MS’s impact on the person’s capacity to function.
Who can use DisabilityCare Australia? Anyone who’s affected by a disability, who meets either the disability requirement or the early- intervention requirement, and:
• who’s younger than 65 • who’s an Australian citizen
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• who lives in a launch area and meets its specific age requirement (in NSW and Victoria, it’s ‘younger than 65’).
How do I become a DCA participant? You need to meet the eligibility requirements as outlined in this article. You can check your eligibility by accessing the My Access Checker, which is available on DCA’s website, www.disabilitycareaustralia.gov.au. The checker is a short online self-assessment tool. When you’ve completed the assessment, you’ll be instructed about what to do next. You might be asked to call DCA on 1800 800 110.
What happens to the funding I already have? If you’re an existing client of Australian Government and State/Territory Government disability programs, your services won’t change. For example, in NSW, the services might include personal care and ‘home and community’ care, and in Victoria, they might include an individual support package, respite, or home and community care. Because all people can’t have their support plan facilitated at once, each launch area has developed a timetable, and DCA will contact you when it’s time for you to start working on your plan with the scheme’s representatives.
Will I lose any of my current benefits? The scheme isn’t means tested. If you’re an existing client of Australian Government and State/Territory Government disability programs, you’ll continue to access your current types of support. When it’s your turn to talk to DCA’s representatives, if you’re eligible and you’re happy with your types of support, DCA will make sure your current supports are listed in your plan. Your individual plan won’t be decreased. The minimum standpoint is you’ll receive the same level of support, and you might receive extra types of support based on your needs and what’s assessed as being reasonable and necessary. If you’re not eligible – for example if you’ve turned 65 but you’ve been accessing disability types of support before that age – you’ll have the choice to continue to receive the same level of support you’re already receiving by way of your disability programs.
Will my carer still be eligible for carers’ payments? Yes, this aspect is unchanged and does not affect CentreLink payments.
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:
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• 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 determine the timeframe for commencement of those people’s planning. Also, MS Australia – ACT/NSW/VIC has registered to be a DCA service provider in the Hunter and Barwon launch areas. “All participants will choose their provider and how they access the types of support as outlined in their individualised plan. We’ve registered so we can deliver the types of support to participants who choose us,” Deborah says.
MS Australia – ACT/NSW/VIC will also:
• continue providing its existing government-funded disability services and the services it either funds or subsidises in non-DCA launch areas • monitor the experiences of people who have MS and who live in one of the launch areas, gather information from staff members in order to understand the issues, and advocate appropriately.
“We want to stay involved so we can learn as much as possible and support people who have MS,” Deborah says. DCA is also holding forums at which you’ll be able to learn more about how the scheme is operated. To find out more, go to www.disabilitycareaustralia.gov.au/
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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 help,” she admits. It was early on that Terri learnt to cope with what life dealt – in fact, Ron, who spent 25 years serving in the Australian Army, was doing a tour of duty in Vietnam when their first child, Robert, was born. Terri says, “For the first year, I brought Robert up on my own.” The lad had turned 13 and Terri’s youngest son was four when pins and needles in her hands, arms and legs led to a diagnosis of MS. “The doctor told me to get on with my life. I decided I wanted to guide the boys through their education and see them married. I didn’t say much to the kids about having MS. Robert was doing the MS Readathon at school, so he knew about it. Ron was still in the army, and I didn’t discuss it with him, because it was my problem.” During that period, Terri found a coping mechanism that still serves her well. “I keep a journal. I don’t burden the family. I write down how I’m feeling, and it’s between me and my journal.” At the time she was diagnosed, Terri was working in catering, but in 1990, she took a position in a primary school as an ‘integration aide’, helping students who had physical and emotional problems. “Those children were inspiring,” she says. “When I felt sorry for myself, I’d think of the boy who was legally blind and yet got on a bike and rode it.” Eventually, symptoms such as fatigue took their toll, and Terri gave up paid work and took voluntary positions. Once a week for several years, she helped on a mini-bus for people who had a disability. She also volunteered at Watsonia, the MS accommodation and respite facility. “For a few years, I took people with MS to their appointments. I felt needed, and I enjoyed helping someone. I never let on I had MS, because compared with me, they were in a much worse condition.” Since 1996, Terri has been using a walking stick, but in recent years, her mobility has deteriorated and she now relies on a walking frame. In 2012, her neurologist said her MS had developed into secondary progressive. “My memory’s going, and that’s really frustrating. Physically, there are things I can’t do any more. I sent my driver’s licence back, because it was too much of a temptation.” After decades of being independent, Terri now relies on Ron, who’s become her carer. Ron says he worked hard at encouraging Terri to send her story to Intouch. It encompassed their
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recent 4,250-kilometre, 17-day journey on a trike, travelling from Whittlesea to Maryborough, in Queensland. “Terri’s a quiet person who’s done a heap of volunteer work,” Ron says. “She prefers to remain in the background as a quiet achiever.” “I love the trike,” Terri adds. “We meet so many people. Yesterday, we went to Seymour, and no matter where we go, whenever a car passes, we get the thumbs-up. My advice is ‘Get on with life; don’t sit around thinking about what you can’t do; keep on going, and be part of the community.’”
Would you like to share your story with other people living with MS? Call the editor on (02) 8484 1316 or email [email protected]
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Q&A: Your MS-related, health and lifestyle questions answered. TM If you have questions about MS-related issues, please contact MS Connect on 1800 042 138.
Q: Can you tell me about the latest oral drugs for MS that are available in Australia? – Daniel, NSW
A: 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 the committee’s July meeting, for listing under the Pharmaceutical Benefits Scheme (PBS). BG- 12, meanwhile, was approved by the TGA in July and is also being considered by the PBAC. At the time of writing, the PBAC’s recommendations weren’t known. In clinical trials, both of these oral MS medications have been shown to lead to a reduction in relapse rates and a slowing of the rate of disability progression in people who have Relapsing–remitting MS (RRMS). When the PBAC members are making recommendations, they’re required to consider a number of factors, including the treatment’s clinical efficacy and cost effectiveness relative to other medicines, as well as a new listing’s cost to the government. The Federal Government then considers the PBAC’s recommendations, for final approval.
Teriflunomide This drug belongs to a class of medications called pyrimidine synthesis inhibitors. It’s in the form of a film-coated tablet that’s taken daily by mouth. It acts by interrupting the life cycle of specific types of white blood cell, called lymphocytes. In MS, these small lymphocyte cells have a role in destroying myelin, the protective sheath that surrounds nerve fibres and is an aid in efficient flowing of nerve signals or messages to and from the brain and various parts of the body. Teriflunomide works by causing a reduction in production of an enzyme – a type of protein – that lymphocytes require in order to divide and mature. The number of lymphocytes circulating in the blood and reaching the central nervous system is thereby reduced, and in turn, damage to the nerve cells in the brain and spinal cord is reduced. The reported side effects of the drug’s use include nausea, abnormal liver test results, diarrhoea, and hair thinning or loss. Only rarely, some people develop problems related to their liver, skin or blood; increased blood pressure; or pain. Based on animal-study results, teriflunomide can cause birth defects if it’s used during pregnancy. It shouldn’t be taken by pregnant women or women who are of childbearing age and aren’t using effective contraception.
BG-12 Taken twice daily as a capsule, this drug is a compound called dimethyl fumarate, and has both anti-inflammatory and neuro-protective effects. In Europe, it’s been used as a treatment for psoriasis for many years. In two recent Phase III clinical trials, relapses were shown to be reduced by at least 50 per cent, and disability progression in RRMS patients was shown to be slower compared with that in patients who were given a placebo. MRI scans showed, new
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lesions were also reduced compared with the effects of another medication, glatiramer acetate. These two Phase III trials have been extended so researchers can examine the drug’s long- term effect on relapses and disability progression. Although BG-12’s mechanism of action isn’t fully understood, the drug is thought to modulate the immune system and protect it by way of a molecule called Nrf-2. When the Nrf-2 pathway is activated, the neurons are defended against death caused by oxidative stress, the blood–brain barrier is protected, and maintenance of myelin integrity is supported. The side effects can include flushing and feeling hot; headaches; and gastrointestinal upset such as diarrhoea, nausea and abdominal pain. Seek medical advice for use during pregnancy.
MS Australia – ACT/NSW/VIC does not recommend any specific disease-modifying treatment. Please consult your neurologist.
This article has been reviewed by Dr Lisa Melton, Research Development Manager, MS Research Australia.
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FEATURE: MS AND EMPLOYMENT
Strategies for work When a person is diagnosed with MS, he or she will worry about a lot of things, not the least of which is whether they will keep their job. But if they have help and a plan, they might be able to remain in the workforce for years.
Work gives us more than an income − we develop our skills, enjoy social contact, stay active, and have structure and routine in our days. We can also gain immense satisfaction as we reach the goals we’ve set for ourselves, finish projects, or overcome challenges. In addition, work can be an essential element in how we view ourselves, because through it we can gain status and shape our self-esteem and self-confidence. For many people, learning that they have MS can mean that their job is threatened; in fact, even if their manager or employer is an understanding person, their long-term employment can be at risk because of the disease’s unpredictable nature. According to the results of the Australian MS Longitudinal Study, 90 per cent of people who have been diagnosed with MS either are employed at the time of the diagnosis or have a history of being employed and experienced in work; in fact, many people are in the period of their life in which they’re building a career and family and paying off a home loan. As Stephen Jolly, who’s Manager, Employment Support Service (ESS), MS Australia − ACT/NSW/VIC, points out, the barriers that diagnosed people face in gaining or maintaining employment aren’t due to a lack of skills or work experience. “The barriers are caused by the condition,” he says. “Some 50–80 per cent of people who have MS leave full-time employment within 10 years of being diagnosed, despite the fact that most of them have a positive work history at the 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.” MS Australia − ACT/NSW/VIC acknowledges that employment is a major concern for people who are living with MS, and set out to help. As a result of the changes that were made to government funding in March 2010, the ESS in Victoria was able to expand significantly. “We’re the only specialist employment-support service in Australia that’s working exclusively for people who have MS,” Stephen says. “Mostly, we support people who are concerned about keeping their job. Since we’ve had the ability to expand the service, we’ve helped more than 350 Victorians either gain employment or remain employed.” In March 2013, MS Australia − ACT/NSW/VIC was accepted as a Job Futures member, whereby the organisation was able to continue the ESS program. Job Futures is an Australian Government initiative and is one of Australia’s largest employment-service providers. Now, as a Job Futures member, the ESS is planning to expand the program into NSW. “We’ll start in the Sydney metropolitan area, but we hope to extend the service to the wider regions and the ACT,” Stephen explains.
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.
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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 do an assessment to establish strategies and decide on the equipment the person might find useful so he or she can find it easier to stay working. We can use funding from Job Access to buy the aids and equipment required. Through the program, we’re also able to subsidise some services or therapies so people can better manage their symptoms and ultimately do their job.” Joanne says the ESS can also arrange for a personal carer to help via the Work Based Personal Assistance program, from which the person is provided with help for up to 10 hours a week so he or she can remain working. “For example, one man who used a wheelchair needed help getting to and from his car.” This type of help can be useful for not only ongoing assistance but while the person with MS is recovering from a relapse. Joanne warns that the time immediately following the diagnosis or during a relapse can be when people are tempted to make decisions about their work. “Any decision to change work hours or leave work should be an informed one, and no one should leave work without seeking advice.” A professional such as an occupational therapist, a physiotherapist, a social worker or an MS nurse can suggest strategies for managing your symptoms. “Most people with MS have no idea of the range of adaptive equipment that’s available, such as different styles of keyboard, visual equipment and mobility aids,” Joanne says. Another cause for concern is whether you should tell your employer you have MS. The choice is yours, unless your symptoms constitute an ‘occupational health and safety’ risk. For example, if your work involves operating equipment and your symptoms entail a risk to you or anyone else, you’re required to disclose you have MS. There are also some government departments that require you to disclose health conditions such as MS. “About 50 per cent of the people I’ve worked with haven’t disclosed,” Joanne says. “For some people, the right time to tell their employer is when the MS begins to have an impact at work. It could be that they’re slurring their speech and having trouble remembering things, so that people think they have an alcohol problem.” Regardless of why you’ve decided to disclose, you don’t have to deal with the situation alone: a representative of MS Australia − ACT/NSW/VIC can attend the meeting, or you can take your union representative along if he or she understands the impact of MS. You can also ask your GP or neurologist to write a letter to your employer in order to explain your condition. “Disclosure can sometimes lead to a sense of relief, because the person with MS is able to ask for help, for example to have more flexible working conditions or have adjustments made to his or her equipment such as by requesting a larger computer screen. We can access the equipment in a way so there’s no cost to you or your employer. If working from home becomes an option, we also have funds available for equipping a home office.” Your confidence can receive a boost when you realise that your employer will gain huge benefits from maintaining you as a productive employee. Employers find it easier to make adjustments for a valued employee than face the risk and expense involved in recruiting someone new. You can also request assistance and advice from the ESS about strategies to use both at the workplace and outside it in order to help yourself stay on at work. For example, fatigue is one of the biggest causes of early retirement, but there are many ways in which to deal with it, such as taking regular breaks, modifying your hours, exercising regularly, managing heat, and
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using a cleaner and/or gardener at home so you can reduce your level of fatigue and help yourself continue working.
Time to change?
If the day comes that you need to change your employment or scale it back, you’ll need to seek advice and make informed decisions. If you have a good relationship with your employer and remain open to discussing your situation, you might be able to reduce your hours, change your job description, work from home or become self-employed. Before you take the final step, however, you need to seek advice and investigate the longer- term impact your decision might have on your entitlements, such as superannuation, insurance and Centrelink payments. “Everybody’s different, and every journey with MS is different,” Joanne asserts. “If you’re in the workforce or you want to return to it, contact MS Connect as the starting point; you’ll be put in contact with us, and we’ll meet you wherever you want – at an MS-organisation office, your home, your workplace or a café. You might find it helpful just to talk to us, and you mightn’t even require a workplace assessment. Often, the simplest things can be the reason that people’s life is made easier and they’re able to keep working. If the person requires assistance dealing with larger problems, we can help them get the right equipment or treatment and can empower them to handle their symptoms and stay in the workforce for longer.”
Name: Rebecca Wood Age: 36 Employed: Business Manager and Audiologist with Bernafon Australia Lives: Melbourne Diagnosed with MS: 2010
When I was diagnosed, I was managing a large audiology practice. Soon after, I decided to switch jobs and to tell my new employer about my MS, because I needed his understanding. My symptoms include transient numbness and tingling, fatigue, and short-term memory loss. I work full time, and about 18 months ago, I took 12 weeks of maternity leave to have our first child, and then returned to work. In October 2012, a friend who has MS suggested I phone the MS Employment Support Service. I didn’t call immediately, but when I did, the ESS consultant came to my house and made some terrific suggestions. As a result, I now use a Livescribe digital pen during meetings. It’s a digital pen that captures audio and synchronises with what I write. I now find it easier to concentrate and contribute to the discussion, because I don’t need to take extensive notes. The ESS also found funding for an iPad, so I no longer lug a large laptop around – I just pop the pen and iPad into my handbag. During the consultant’s visit, she noticed I worked at my kitchen table. She said the set-up wasn’t optimal for posture so she organised a new desk, chair and footrest. Because heat can
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affect my fatigue, she also had an air conditioner installed in my home office. Other improvements included a Therapod backrest for my car, to improve my posture and relieve aches and pains when I’m driving between clients. In order to relieve muscle stiffness, I have my exercise subsidised, so I now do taekwondo twice a week. In addition, someone from a cleaning service comes fortnightly, which means I don’t have to do any heavy lifting. I have career aspirations, and I’m hoping I can move upwards, so I’m working hard to make sure I’m the logical choice. The consultant has empowered me to do things for myself. Best of all, I’m up to date with my work, which means I can spend my weekends with my husband and daughter. My life’s changed for the better!
Name: Rob Mackay Age: 40 Employed: Project Manager, Kane Constructions Lives: Melbourne Diagnosed with MS: 2004
I was diagnosed when I was 31. I’d had trouble running, but I’d put off going to the doctor, and when I was in Canada skiing, I kept falling over and couldn’t walk very far. I was already working for Kane Constructions, so I kept them in the loop while I was being diagnosed. Initially, my MS didn’t have an impact on my work, but I spend a lot of time walking around large building sites, and my strength started to wane. I have Primary Progressive MS, and as I got worse, my manager modified my role so I don’t have to do as much walking around. I also do some work from home. 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, so they arranged for the ironing to be done. I’m also married, with three young children, so rather than increase my fatigue trying to help my wife, the ESS organised for a cleaner to come in. After I healed from the infection, I returned to using crutches at work, or a three-wheel scooter. I had a few falls on site, so the ESS arranged for me to trial a manual wheelchair that had a new power-assist device, and the wheelchair can power up steep hills, through carpet and over grass. We’re waiting to see whether the ESS can secure funding for it. The ESS is constantly there for me. Without their help, I’d find working extremely difficult. My company has also been supportive, modifying the role to suit my ability and giving me time to do what I need to do. It’s a progressive company that also makes financial contributions to MS research.
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EMPLOYMENT SERVICE EXPANDS
MS Australia − ACT/NSW/VIC offers people who have MS the opportunity to either stay in employment or return to the workforce via our MS Employment Support Service (ESS) program. Until recently, the only people our organisation was able to assist were people living in Victoria; however, we’re now expanding the service into Sydney and we will eventually be making it available in the ACT and in regional and rural areas. Drawing on staff expertise and knowledge of the effects of MS, we can use the ESS to help manage 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, apply for jobs, write a resumé and practise your interview technique. The ESS is a member of Job Futures, one of Australia’s largest employment service Providers. Job Futures is the only national network of community-based and not-for-profit organisations providing employment, training and related services.
To contact the MS Employment Support Service, call MS Connect on 1800 042 138. For more information about Job Futures, go to www.jobfutures.com.au/
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 sure I get a bit of sun regularly. I stay well, and work hasn’t been a problem . . . yet. The MS is always there – like the sword of Damocles. Teaching’s been a great job for me: I can’t sit for too long; I can’t stand for too long – when you teach, you can bounce up and down at will. I’ll tell my students why I need to stand
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back from them during their ‘smoke break’: the theory is that smoke is toxic for people who have MS. Quite often, they’re fascinated and they want to know more. Every now and then, one of them has a parent or sibling who has MS, and disclosure can be a bonding experience. I’ve had freelance writing jobs during which I didn’t disclose my MS status, because it’s as irrelevant as discussing my sex life – still, if people in the office want to know why I won’t eat the chocolate cake, I’ll tell them.
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 MS. I rang my manager, who was supportive and came back with an offer for me to work on the ground, doing light duties. While I was doing that work, I was able to gauge how I was physically. I could see an improvement, and needed to know whether or not I could return to the job I loved. I met with the company’s doctor, who cleared me to fly. The airline asked me for a return-to-work plan, and offered options such as ‘part time’, ‘domestic’ and ‘supernumerary’, which means you fly with a buddy for support – I was lucky enough to fly with my sister, who’s also a flight attendant. On my first day back, my manager was there to meet me, and I got confidence from the support of my colleagues – they watched out for me and helped me with little things; for example, they told me to sit when I looked tired, or got my bags at the end of the trip. Later, thinking of my future, my manager offered me a two-month customer care position. I jumped at the opportunity to broaden my experience. My manager gave me this chance so I could see I can do things other than flying. The airline could’ve given me a redundancy; I’m so grateful to be still working with them.
– As told to Vanessa Holt
Manage your work relationships
If you tell your employer you have MS, you’re better able to ask for help if you require it. Although some people will be concerned for your wellbeing and will want to help you, others might resent any adjustments that are made in order to accommodate you. Therefore, it’s important you manage your relationship with your colleagues carefully.
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Birgit O’Sheedy, who’s a Clinical Psychologist from Waves of Life Psychology and who works with people who have MS, says clients often discuss how much they should reveal at work. “Assess the positive and negative aspects of informing your co-workers,” she advises. “Ask yourself whether it’d be easier to manage your MS symptoms at work if your colleagues were aware of your MS.” Birgit says it’s worthwhile to cultivate your relationships. “If you have a social connection with colleagues, you have a supportive environment in which you can ask for help.” This goodwill can be useful if you need to ask for a deadline extension or to take more breaks. “Show interest in your co-workers’ life without being intrusive; for example, ask about their weekend or how their kids are doing. Be an active listener, and pay attention.” If you need to ask for help, Birgit suggests you follow these guidelines:
• Be clear about what help you require, and consider writing the request down so you can express it as confidently as possible. • Approach the person who’s most qualified to help you, and make the request at a time that suits him or her. • Explain clearly and politely what you need help with. You could also give the person a brief explanation of why you require help. Remember that the person mightn’t know much about MS. • If you feel uncomfortable asking for help, remember that if you’re assertive, you’ll minimise the stress you feel and any flow-on effect it might have on people. • If the people at your workplace aren’t open to helping you or you struggle with communicating assertively, seek support from a counsellor or psychologist.
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MS READATHON
Still time to raise funds
Last week, thousands of students and adults closed the final pages on the 34th MS Readathon. Throughout August, these community-minded individuals counted books, magazines, e-readers, newspapers and school readers towards their reading goals, and they’re now collecting and returning the sponsorship funds they’ve raised. This year, many students have taken the lead in encouraging their peers to get involved in this iconic fundraiser. Kayla Sandry, 14, first took part in the MS Readathon in 2008, and to date she has raised more than $30,000. “Although I’ve encouraged students at my school over the years,” Kayla says, “this year I wanted to visit other schools and share information about MS and the MS Readathon, and show how easy it is to get involved and help people.” In June and July, several Penguin Books Australia authors joined forces with these inspiring students as well as our team of school-volunteer presenters and MS Ambassadors in order to motivate teachers and students to get involved. They spoke about the many benefits of the MS Readathon, such as the importance of reading, the magic of books, raising funds, and helping other people. Also, in July, a film crew descended on Sydney’s Pymble Ladies’ College (PLC) to facilitate a live streaming of a virtual school presentation into hundreds of schools throughout the ACT, NSW, Queensland and Victoria, via webcast. The event was hosted by humorous Penguin author Oliver Phommavanh, and included a talk delivered by MS Ambassador Stephen Papadopoulos and PLC students, who encouraged people to make a difference to other people’s lives simply by reading. Our goal is to raise $500,000, and you can still collect donations or ask friends and family members to sponsor you, until 31 October. Don’t forget that everyone younger than 18 who raises more than $40 will receive a reading reward as a thankyou. Log on to www.msreadathon.org.au to see the rewards that are available this year – as well as some great fundraising tips!
Bequests: 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 they’ve received from MS Australia – ACT/NSW/VIC was the fuel for their desire to build a strong support network for Western Plains residents who are living with MS.
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After having a discussion with the NSW Planned Giving Officer, they were encouraged to consider leaving a bequest in order to help other people who have MS. To anyone who’s considering making a bequest, Ken says, “Please don’t hesitate to become a benefactor. Your contribution will be gratefully received and put to good use by MS Australia – ACT/NSW/VIC to help both people who are affected by this disease and people who are yet to be diagnosed.”
To order a free copy of our booklet Your Future in Your Hands, which contains information about the importance of having an up-to-date will, and how to leave a bequest, please either call Donna Bradley (Victoria) or Jacqui Sumner (ACT and NSW) on 1800 443 867 or email [email protected]
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EVENTS: ACT & NSW
For bookings or more information, email [email protected] or call 1800 042 138
INFORMATION SESSIONS Registration is essential, because programs will be run only if minimum numbers are achieved. For bookings or more information, please email [email protected] or call 1800 042 138.
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 Join us for these two sessions to be held at Nutrition Australia, Unit 5, 70 McLaurin Crescent, Chifley, ACT. You’ll have the opportunity to share the meal that has been prepared. 19 November, 5.30pm – 7.30pm 26 November, 5.30pm – 7.30pm
Yoga for MS Wednesdays, 5.45pm – 7.15pm Gloria McKerrow House, Deakin, ACT Cost: $17 per session. Phone Ruth on 0401 288 921.
MS Exercise Class Wednesdays, 12 noon 6X Fitness Studio, 171 Maroubra Road, Maroubra Call Shaun Hockley on (02) 8084 0880 for details.
Iyengar Yoga for MS Tuesdays in Petersham; Wednesdays in Lidcombe Cost: $10 per class. Call Tracy Martinuz on (02) 9646 0692.
Progress in MS Research Public Lecture MS Research Australia (MSRA) invites you to attend a public lecture to hear from research experts on the latest findings in multiple sclerosis research, as well as an overview of research discussions from the Progress in MS Research Scientific Conference.
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16 November, 9.30am – 12 noon Kerry Packer Education Centre at Royal Prince Alfred Hospital, John Hopkins Drive, off Missenden Road, Camperdown
This public lecture is FREE of charge, however, spaces are limited so please register online at www.msra.org.au/public-lecture to secure your seat.
Get on your bike Join in the fun on Sunday, 3 November and be among the thousands of cyclists who participate in the 2013 MS Sydney to the Gong Bike Ride in order to raise $4.5 million for people who are living with multiple sclerosis. “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 the spectacular scenery as they wheel it through the Royal National Park, over the Sea Cliff Bridge and along the coast road to Wollongong. “Rider numbers are capped at 10,000 entries, so we encourage people to register as soon as possible,” Karl says. “The entry fee covers only the significant cost of staging the event, so riders are encouraged to commit to fundraising a minimum of $250.”
How you can get involved • If you’re unable to ride, why not ask a family member, friend or colleague to ride on your behalf? You can offer to go online to help set up the team, rally support, and perhaps coordinate some local fundraising and facilitate a contribution to the team’s total in that way. • Go online to support a team by making a donation and/or alerting your family members, friends and colleagues to this good cause. Every cent counts! • Have you considered volunteering? It can be a fun day, so give us a call to talk about the opportunities we have available.
To sign up to ride, donate or volunteer, visit www.msgongride.org.au
TELECONFERENCES Available to clients and their family members throughout all regions. To register please call 1800 042 138
Managing Fatigue In this two-part teleconference series, you learn how to manage MS-related fatigue. 2 and 16 October, 10.30am – 12 noon 13 and 27 November, 10.30am – 12 noon
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Continence Care in MS Learn about bladder and bowel problems: causes, assessment, and treatment options. 17 September, 6.30pm – 8.00pm 15 October, 10.30am – 12 noon 19 November, 10.30am – 12 noon
Working with MS (NSW and ACT only) Explore your rights and responsibilities at work, as well as superannuation, insurance, and financial matters. 17 October, 7pm – 8.30pm
CHAT ROOMS Available to clients and their family members who have internet access throughout all regions. For registration instructions, please call Education Coordinator Diane Browne on (02) 9646 0657.
Mobility Options If you’re considering getting a mobility aid, come and talk about various options with our occupational therapists as well as with other people who have MS. 20 September, 10am – 11am
In the Kitchen If you’re having difficulty cooking, our occupational therapists will provide information about equipment. 23 October, 10am – 11am
Reading Options If you’re having trouble reading, learn about other options such as audio-books and e-books. 27 November, 10am – 11am
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EVENTS: VICTORIA
For bookings or more information, email [email protected] or call 1800 042 138. Registrations essential.
INFORMATION SESSIONS
Learn about MS Suited to people newly diagnosed and to people who want to meet other people and learn more about MS and our services. 16 November, 10am – 1pm Footscray (TBC)
Working with MS Explore your rights and responsibilities at work, as well as superannuation, insurance, and financial matters. 16 October, 6pm – 9pm Blackburn
Managing Fatigue and Coping with the Heat An overview of MS fatigue and how to manage this invisible symptom. Managing heat intolerance will also be part of the discussion. 6 September, 11am – 1pm Geelong
Sleep Well – NEW! Explore the reasons that people with MS have difficulty sleeping, and discuss some strategies for improving your sleep. 30 October, 12 noon Bairnsdale; hosted by the Bairnsdale Peer Support Group
Medication Update The new and emerging medications will be discussed by MS Australia – ACT/NSW/VIC nurses. 9 September, 10am Benalla; hosted by the Benalla Peer Support Group 2 October, 5.30pm Geelong 19 November, 10am Shepparton
Conversation with Centrelink Hosted by the following Peer Support Group. Join one of Centrelink’s officers to discuss pensions and entitlements. 8 November, 10am – 12 noon Geelong
Continence Care in MS Learn about bladder and bowel problems: the causes, assessment, and treatment options. 16 October, 1.30pm Blackburn; hosted by the Blackburn Discussion Group
Role of an Occupational Therapist A local OT will speak to the Swan Hill Peer Support Group. 7 October, 11am Swan Hill
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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.
MS Family Wellness Day 6 October Mornington Aimed at families, couples and singles, the program includes a guest speaker and wellness activities such as yoga, tai chi and massage. Lunch will be provided. Contact us to register your interest.
View programs Recordings of some education programs are now available via the following website: www.mssociety.org.au/education-programs.asp
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FAMILY AND CARERS
Limited work options 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 family member is very difficult, according to Brenda Fisher, a Peer Support Volunteer for the Carers Working Party. Because ‘MS and employment’ is the theme of this issue of Intouch, Brenda went on to Facebook to ask the members of the Carer Peer Support Group for their input. Their response was swift and strong. “It’s such a difficult issue – one that causes a lot of stress,” Brenda says. One of the most challenging aspects is the Catch 22 situation in which the carer has to obtain respite so he or she can have the necessary time away from home in order to go to work. “To get respite, you generally need to know when you require it. However, you won’t know that until you get a job – so the dilemma is: what do you do first? In addition, it’s impossible to get enough ‘attendant carers’ so you can take a full-time position, which means it has to be part time.” Brenda points out that a significant amount of part-time work is offered for either the morning or the evening and therefore coincides with the most demanding times of day: the ‘peak periods’ for the carer’s role at home. 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 months, I returned as a casual. It’s mostly work on weekends, if required, so it doesn’t interfere with all the appointments we have to attend throughout the week.” Brenda adds, “Sure, respite is available for carers via various agencies, but it’s not the solution if you want to enter the workforce, because not enough hours can be provided. It’s best suited to taking time out to do the shopping or have a coffee.” Housework is another concern. If the carer is busy at work, will the respite carer do the chores around the house? “The answer is probably no,” Brenda says. “This means that for carers, life is made impossible because they have to juggle their caring work, paid work and housework.” Carers were also concerned about the impact that paid work would have on their entitlements. If you’re concerned about that aspect, Brenda recommends you talk to either a Centrelink staff member or your Community Support Worker. If you require more support, go to the Facebook page and ask the question there, because your peers might know the answer. “In the group,” she says, “it’s terrific to be able to share problems and be offered solutions.” If you’re interested in improving your work skills so you can apply for jobs, Brenda advises you to look into what your municipal or shire council might have on offer. “Most councils provide computer courses and other skills-based courses, and you’re able to get respite so you can attend them.”
For information about respite, go to: NSW www.workingcarers.org.au/carer-fact-sheets/99-support-for-carers/106-respite-care Victoria www.carersvictoria.org.au/advice/services-supports/respite-carer-support/ To connect with carers on Facebook, go to:
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www.facebook.com/groups/413493135353497/
Raising awareness Sam O’Halloran organised ‘Team MS Mafia’, a 12-strong group of family and friends, to walk in the Sydney MS Walk and Fun Run as a thank you 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-old son Jacob and some of Sam’s old high- school friends were among the members of Team MS Mafia. The team raised about $4,000 from the Walk and Fun Run. Also, Team MS Mafia was featured in Sam’s local newspaper, the Hornsby Advocate. “It’s important to raise awareness about MS,” she says. “If we’d known more, Aaron might’ve been correctly diagnosed earlier.”
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MS COMMUNITY
Communities support the MS cause We’d like to thank the many who take the time to raise money to support those living with MS. Here is how some have rallied together to help make a difference.
Epic cycles for MS Inspired by her partner Bruce, who’s been living with MS for 20 years, Marg Hayes joined Malcolm McKinnon and John Kerby on a fundraising adventure. On 6 April, the trio began a 4,000-kilometre ride from Falls Creek to Darwin, pulling their supplies behind them on trailers! An amazing 38 days later, they completed their epic cycle having raised $12,500 for people with MS. Meanwhile, while Marg, Malcolm and John were undertaking their ride, Ralph and Peter Kiel were setting off to ride 3,500 kilometres from Perth to Ballarat, in memory of their mother, who’d lived with MS for many years. The ride took 25 days to complete, and Ralph and Peter raised an incredible $40,000 for people living with MS. Thank you to these five inspiring, and very fit, individuals.
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 appearance, but a highlight was when Darcy, 11, took out the Champion Junior Angler category having landed a 53-centimetre Brown Trout. Darcy was accompanied by his father, Matt McCann, and the McCann family also won the Champion Family category. Plans are in place for next year’s event, to be held on the Anzac Day weekend of 25–27April. “We had twice as many entrants as we had last year,” Steve says, “so we’re hoping for even more in 2014, which means we’re aiming to raise more money for MS.”
Roll of Honour We would like to thank the following community members also helped raise funds for MS over the past three months:
Emily de Groot – sponsored haircut Laura Tangey and the Footie Gals – Amphlett Cup The trio of Malcolm McKinnon, Marg Hayes and John Kerby – the Alps to the Tropics bike ride Ralph and Peter Kiel – the Perth to Ballarat bike ride Holy Script Primary School – a fun run
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Our Lady of the Rosary Primary School – Wear Red day Jen Straughen – a Mothers’ Day lunch Flemington RSL – a trivia night Sydney Grammar School – three special events Mark Colman and Team Mudup4MS – Tough Mudder Jill and Mike Budden – opened their garden to the public The Australian Institute of Music – a series of music concerts Chris Bayliff – competed in the Tough Bloke Challenge Janette Campbell – a cookie and muffin bake Tobie O’Shea-Anderton and Connor Moore – the North Face 50 Kilometre ultra- marathon Himanshu Dua, Katherine Weeks, David Torossian, Jillian Nalty, Corinne Binat, Andrew Smith, Ross Baker, Selena Barkley and Peter Walsh – competed in The Sydney Morning Herald Half Marathon
Get Involved! To become a community fundraiser contact: ACT: Mirimba Kovner, (02) 6234 7030, [email protected] NSW: Kerry Hill, (02) 8299 0134, [email protected] Victoria: Gill DeCis (03) 9845 2880, [email protected]
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MS COMMUNITY
Volunteers in action Meet some of our inspiring volunteers who are helping to make a difference.
Braving wild weather Almost 400 volunteers throughout Melbourne, Sydney and Canberra were up early on Sunday, 2 June to help at our MS Walk and Fun Run. This event is our annual major fundraiser and involves more than 11,400 participants. So far, more than $1.7 million has been raised. Unfortunately, a cold front swept across south-eastern Australia on the day, and with it, rain and wind that were a threat to the participants’ spirit. Thankfully, however, our volunteers weren’t put off; they brought smiles and enthusiasm to the role of delivering yet another successful event. In typical Melbourne style, three seasons in one day were experienced at Albert Park Lake: the day began with rain but finished with beautiful sunshine. Some 90 volunteers worked a total of 500 hours to ensure that the event ran smoothly. Also, because of the record number of participants, our volunteers were given new roles and challenges, such as staffing an additional drink station. All the volunteers rose to the task, and participants commented on how their smiling faces made such a difference. In Sydney, the weather was wet but the participants and volunteers braved the rain to make the event a success. The crew of more than 220 volunteers contributed a total of more than 800 hours. Some volunteers were required to deal with course adjustments whereas others worked in conditions of flooding to ensure the structures stayed safely on the ground. Their enthusiasm and dedication were appreciated by the participants. In Canberra, 70 volunteers committed more than 360 hours over the weekend and faced wet conditions with a smile and a measure of grim determination. The volunteers at the start site were asked to react quickly when the volunteer marquee had to be dismantled due to high wind, and all of them rose to the challenge. Many participants commented on the smooth running of the event and on the cheering sight of MS volunteers along the course. We thank our dedicated volunteers for their hard work and smiles, and for enhancing a great fundraising result.
An unexpected friendship After having a brush with death, Allan Pennicook was propelled to volunteer, but he never expected to make a close friendship. Allan, 64, is a retired school teacher and music administrator who lives in Canberra. Six years ago, he felt a pain in his back while playing tennis. The pain intensified; an ambulance was called; and when Allan regained consciousness, he found himself in hospital, having undergone heart surgery, and learnt he’d been lucky to survive. “I’d been knocking on heaven’s door for seven minutes,” Allan says. “It changed the way I look at life.” Allan committed to taking care of his health and giving back to his community. As the drummer in a jazz band, he regularly plays at charity functions, but he now wanted to do
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something more personal. He saw a job notice on Seek Volunteer for someone to take a person who had MS to the Australian Institute of Sport swimming pool once a week. “That’s how I met Stephen, in October 2012,” Allan explains. Stephen Tsindos was diagnosed with MS about 20 years ago, and now lives in a nursing home. “I really admire his positive attitude to his disability,” Allan says. “We’re the same age, and we share a love of music. We’ve become great friends.” Allan began by watching over Stephen while Stephen was swimming, but nowadays, the pair might go to the movies, a café or one of Stephen’s medical appointments. “He’s come home for lunch a number of times,” Allan says. “One of the wonderful things about our friendship is there are no awkward moments between us. From helping Stephen in and out of the car to helping him dress, I find that our friendship has an easy calm to it. He acknowledges the little things I do, and my biggest reward is to share the experience with him.”
International award nominee After volunteering as a masseur for seven years, Doug Talbert was nominated by MS Australia for the 2013 Evelyn Nicholson Award for International Caregiver, organised by the MS International Federation’s People with MS Advisory Committee. Although the award was won by Maurice Maso, of Belguim, who’s been caring for his wife for 27 years, Doug was pleased to have been nominated. He estimates that over his years of providing massages at MS Metropolitan North, in Sydney, he’s worked on about 1,000 people who have MS. “I spent my career in finance and law, so it’s great to do something hands on,” he says. “People come to me in pain, and they really appreciate it when I can help them. I find it rewarding.” Doug was recommended for the award by Joanne Tuckerman, the receptionist at MS Australia – ACT/NSW/VIC’s North Ryde office. “You can see the difference on clients’ faces when they leave Doug’s treatment,” she says. S over the past three months: Calling for MS Ambassadors We’re seeking expressions of interest from MS Australia – ACT/NSW/VIC clients who’d like to become an MS Ambassador. In NSW and the ACT, a number of vacancies exist for the right people to join the Ambassadors team in this esteemed and dynamic program. To find out more or to register interest, please call Stephen Papadopoulos on (02) 9646 0600 or email [email protected]
Volunteer opportunities We are looking for more volunteers, and here are some opportunities we’re aiming to fill right now:
VICTORIA Volunteers are required for visits to people who have MS throughout Melbourne and other regions. Volunteers are required to support the MS shops in Fairfield, Daylesford, Malvern, Waverley and Geelong.
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NSW–ACT If you have a green thumb, we could use your help to tidy up the garden at Gloria McKerrow House, in Deakin, Canberra. Volunteers are being sought for the new MS shop in Canberra’s Tuggeranong area. Volunteers are required in the ACT for visits to people who have MS. In the Carlingford area, in northwestern Sydney, a volunteer is needed for home visits and meal preparation. Volunteers are required for home visits in Turramurra, which is a northern-Sydney suburb, and in Cattai, which is in The Hills Shire. Volunteers are needed for helping with yoga classes at the MS Studdy Centre, Lidcombe. In regional areas of NSW, volunteers are required for helping people who have MS to complete various tasks.
If you are interested in any of these opportunities or any other volunteer role throughout our regions, please call MS Connect on 1800 042 138.
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MS COMMUNITY: Peer support
For all enquiries relating to the Peer Support Program, please contact MS Connect on 1800 042 138.
“You’re not alone”
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.
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For more information about the Peer Support Program or to find a support group near you, please call MS Connect on 1800 042 138.
Support Group Profile
Mabel Castineira helped establish and later re-form Sydney’s Esperanza Peer Support Group for Spanish speakers. The group members meet at the Casa Community Service Centre, in Fairfield Heights.
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 contact with me. I arrived from Uruguay in 1978, and I was diagnosed in 2003, when I was 40, but I had symptoms before that. I’m mobile, but I have fatigue and tightness around my body, and some numbness. The first group was established in August 2008 and ran for about three years, but the numbers dropped off and 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.
How have you found the group to be helpful? I don’t have visible symptoms. I drive and I walk, and when I complain about not being well, people don’t understand. At the group, I feel as though I’m understood. You can ask questions, and people support you, but it’s more than that: it’s a social event. We laugh, we talk and we eat, but the main thing is we feel we’ve been listened to.
When does the group meet? On the first Friday of the month, from 10.30 to 12 noon, for morning tea. Sometimes we’re still there at 2pm! As long as there’s someone who wants to talk, and no one else requires the room, we talk. The word ‘esperanza’ is Spanish for ‘hope’ – we hope that in the future, scientific research will lead to a cure for MS.
Are there any other activities? Sometimes we visit people in their home, and we’re planning to go to the Uruguayan Social Club soon.
Do you have any advice for people who are considering joining a support group? I’m a positive person, and I find pleasure in being with other people who are positive. When you get hit with MS, you tend to withdraw from society, but when you join a group, you find hope and raise your self-esteem, because you’re doing something positive. However, if you join a group, be ready to talk, because you’ll make new friends, and those friends help you to never give up on yourself.
For more information about the Peer Support Program or to find a support group near you, please call MS Connect on 1800 042 138.
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MS AWARENESS MONTH HIGHLIGHTS
Activities shine light The Kiss Goodbye to MS (KGTMS) campaign was launched in Sydney’s CBD on 30 April and ran throughout May, culminating in World MS Day on 29 May. This is the fourth year of KGTMS, and the challenge was to wear, dare and share all things red during May in order to increase the community’s understanding of MS and encourage people to raise funds for research and services. In Sydney, the fundraising events included a dinner hosted by Network Ten newsreader Sandra Sully at the China Doll restaurant; in Melbourne, comedian Tim Ferguson hosted a dinner at the Red Spice Road restaurant; and Brisbane’s fundraising dinner was held at Gianni’s Restaurant. Lunches, trivia nights and individual fundraising events were also held. The corporate community joined in by using red lighting to light up public buildings throughout May. In Brisbane, the night sky was painted red courtesy of the Conrad Treasury 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. On 23 May, 30 people attended a health-professional day at The Nerve Centre in Blackburn. Presentations about MS were given by neurologist Dr Neil Shuey; Dr Elizabeth McDonald, Medical Director of MS Australia – ACT/NSW/ACT; and Professor Marita McCabe, from Deakin University. On World MS Day, to thank supporters, MS Research Australia hosted a cocktail reception at Kirribilli House, the Prime Minister’s Sydney residence. The evening was hosted by Network Ten presenter Kath Robinson, and Her Excellency the Governor of NSW Marie Bashir was guest of honour. At the time of writing, more than $726,000 had been raised from KGTMS activities. To see highlights, go to www.kissgoodbyetoms.org
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. Her journey on a ride-on mower from Melbourne to Sydney became a highlight of Kiss Goodbye to MS. Megan, 43, visited 25 towns over 16 days. Her family accompanied her for part of the journey, and she was also helped by an enthusiastic crew of friends. During her stop in Canberra, Megan was met by Senator Kate Lundy, Minister for Sport, on the lawns of Parliament House and was also a special guest at a fundraising dinner held at the Novotel Hotel. On World MS Day, Megan’s mow-down culminated in a reception held at the Westmead Millennium Institute, in Sydney. She was greeted by her husband Brian and the children along with her friends and supporters; MS researchers; and Mr Geoff Lee, the NSW Member for Parramatta. The reception received a lot of media attention. Lawnmower company Briggs and Stratton donated to Megan the Ferris mower she’d ridden, and also donated a $10,000 cheque to her KGTMS fundraising account. Megan not only captured the hearts of Australians; she raised more than $50,000.
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Mass media Megan Healey’s fundraising journey generated an amazing 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. • Megan’s departure was also covered on ABC News 24, ABC Breakfast News, ABC1 News, Channel 10 News and SBS News, as well as in The Herald-Sun, on the Triple M (Melbourne) breakfast-radio program with Eddie McGuire and Mick Molloy, on 3AW radio, on 774 ABC radio and in That’s Life magazine. • En route, Megan generated media attention, including for many regional newspapers and in the form of regional radio interviews such as for 3BA Ballarat, MyMP with Glenn Ridge, ABC Goulburn Murray and ABC Illawarra, and TV interviews on WIN Gippsland, WIN Wagga, Prime 7 Albury and Prime 7 Wagga Wagga. • Megan’s arrival at the Westmead Millennium Institute was covered by media representatives from Channel 9’s Today Show, ABC TV, The Daily Telegraph and local Parramatta papers, and she was interviewed by Chris Smith on Radio 2GB, by James Valentine on 702 ABC and on ABC Central Coast.
Other media attention • The fundraising dinner held at Sydney’s China Doll restaurant was covered in The Sun- Herald. • The Daily Telegraph featured a story about Emma Giunti, a person who has MS. • MS Ambassador Jessica Gray was featured in Practical Parenting magazine. • Comedian Tim Ferguson and author Jillian Kingsford-Smith, who have MS, were interviewed on Channel 7’s Weekend Sunrise. • World MS Day also attracted media coverage, including an appearance on Channel 10’s The Project by Tim Ferguson.
Social-media success The social-media campaign behind Kiss Goodbye to MS was a huge success: 17,000 friends were made on the Facebook page! The campaign was led by MS Australia’s Emma Bennett, who encouraged thousands of people to engage on Facebook, Twitter and Instagram. The innovative ‘Photo a Day’ campaign also attracted a huge response, from people who were posting creative photos on Facebook.
Mottos shared For this year’s World MS Day (WMSD), people who are living with MS were encouraged to share the mottos they use to get themselves through the difficult times.
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Founded by the MS International Federation, World MS Day has been held since 2009, and people from 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.
Walk and Fun Run exceeds target The MS Walk and Fun Run took place throughout Melbourne, Sydney and Canberra on Sunday, 2 June, and its fundraising goal was smashed: more than $1.7 million – and counting – was raised! The weather varied from torrential rain to winter sunshine, but the spirits of the more than 11,400 participants weren’t dampened. The Melbourne MS Walk and Fun Run started out cold and wet, but just as 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, walked with his wife Leanne and new baby daughter Quinn. Although Tim had to stop every 20 metres, he persevered for four hours in order to complete the five-kilometre course. Adriana Grasso and her team members raised more than $142,000 – the highest fundraising amount of any team in the history of the event! Meanwhile, Mick Hogan and his 90-strong team Hogan’s Heroes took part for the fourth year in a row and raised more than $46,000. Robyn Hunter, CEO of MS Australia − ACT/NSW/VIC, walked with her husband and four sons. “I was impressed with the passion and enthusiasm of everyone who participated,” she says. In Sydney, even though Hyde Park was a muddy quagmire, the participants danced to the zumba music and walked in the rain. Highlights included a heartfelt speech delivered by David Galea, an MS Ambassador, and the appearance of Andrew Constance, NSW Minister for Ageing and Disability Services, who came to support Bruce Frost, a constituent who has MS. Meanwhile, the reason that Home and Away actor Lisa Gormley ran the eight-kilometre course was that a friend’s aunt has MS. Outstanding NSW fundraisers included the team members of Camp Saliba, who raised $20,000, and top individual fundraiser Nicole Beath, who raised almost $8,700. Despite some wild weather, the Canberra event had an upbeat vibe as participants gathered at Rond Terrace, ready to take the much loved bridge-to-bridge route around Lake Burley Griffin. MS Ambassador Beth Wurker told the crowd about her journey with MS, and judged the ‘best dressed’ competition. Beth awarded the individual prize to ‘Gumby’ and the team award to The Randoms. Congratulations and thank you to everyone who was involved, whether you volunteered, donated, participated and/or fundraised. For more information about the events, visit www.mswalk.org.au
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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 must take reasonable steps to accommodate their employees’ disabilities. However, even in times of economic stability, employers occasionally lay staff members off. If you have a disability or chronic illness, you have to be aware of your rights. The ‘reasonable steps’ that employers must take to accommodate their employees’ disabilities might take the form of:
• changing your workstation by providing you with a supported chair, improving the air conditioning or moving your work area to the ground floor • allowing you to take time off work or to obtain medical treatment • changing your work duties, in some circumstances • allowing you to work part time.
If you’re considering reducing your work hours, make sure you obtain some advice about how the reduction will affect your superannuation. Legally, your employer doesn’t have to offer you another job, although he or she can’t terminate your employment for at least three months. Under some Workers’ Compensation legislation, employers must keep the job of any worker who has a work-related disability open for at least 12 months. Many employers know very little about disabilities and will be happy to help if you tell them about the problem. However, if your employer won’t help, you might have a legal claim. Anti-discrimination and workplace-relations laws are such that your employer might be forced to either alter your working conditions or pay you compensation. If you’re considering giving up work because of your health problems, you have to obtain advice before you resign, because the way you cease work can affect your entitlements.
Early access to super If you’ve stopped work, you might be going through a period of financial difficulty. Most superannuation funds have a policy of allowing you to apply for access to some of your super so you can help yourself through those times. However, the rules for access can be complicated and can affect your other entitlements. If you access your superannuation on the grounds of ‘financial hardship’ and are younger than the ‘preservation age’ – between 55 and 60 – you might pay a significant amount of tax on any benefit you withdraw. The amount of tax can be up to 21.5 per cent. If you’ve ceased work as a result of illness or injury, however, you might be able to access your super because of ‘permanent incapacity’. A superannuation benefit that’s released for that reason is taxed at a concessional rate, and a significant portion of the benefit is tax free.
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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 because you have that amount. Any amount you take out of the super fund does count towards the ‘assets test’, and if you access an amount that’s larger than $192,5001, you might be above the Centrelink assets threshold, and Centrelink will cease your payments for a time.
Insurance benefits You might also be entitled to claim some significant insurance benefits. Most superannuation funds offer automatic ‘death and disability’ insurance benefits that can be very valuable, especially if you have a long-term illness or injury. You need to note that often, because fund members have accessed their super, their insurance cover under the policy ceases. It’s extremely important you obtain advice about this aspect 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 diagnosed as having a terminal illness • Total and Permanent Disability, and Income Protection: Income Protection – or Total and Temporary Disability insurance, as it’s sometimes called – usually entails a monthly benefit that’s payable for two years from the date you ceased working, but minus the waiting period. Some Income Protection policies are payable for five years, until you turn 65, whereas others are payable until you die.
Redundancy Many people believe that if they ceased work because they were made redundant, they’re not entitled to claim a disability benefit, but that belief isn’t necessarily sound. Many people who are sick or injured when they’re made redundant are entitled to lodge a claim for disability benefits through either their superannuation fund or their insurance policy. If you think you might be made redundant, you should obtain advice about your superannuation entitlements, because the way in which you cease work, as well as any agreements you sign when you cease working, might affect your super or insurance. Some insurance policies have a rule whereby you’re prevented from claiming a disability benefit if you’ve accepted redundancy. Although that rule is unusual, before you sign any agreement or accept redundancy, you should have an expert examine the agreement so you can be sure that your superannuation entitlements won’t be affected.
Terminal illness Under the legislation, super-fund members who’ve been diagnosed as being terminally ill are eligible to access all their superannuation tax free. ‘Terminal illness’ means that the member has fewer than 12 months to live. In many superannuation funds, terminally ill members can also claim the insured death benefit even though they’re still alive. The insurance benefits are also tax free.
Do you need help? Maurice Blackburn Lawyers has set up a free advice service. If you’d like to speak to an expert before you access your superannuation, or if you have any other questions about
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superannuation or insurance, call 1800 810 812 to access the free advice and help.
1This figure ($192,500) is for single people who own their home. Other figures are applicable in the case of couples and people who don’t own their home. The figure was current as in July 2012.
This article was supplied by Josh Mennen, Senior Associate in Maurice Blackburn Lawyers’ superannuation and insurance practice.
Disclaimer: Individuals shouldn’t use the information in the article as legal advice; they should seek professional advice as they require.
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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 increase can be caused by a fever, exercise or the ambient temperature; in fact, a simple way in which you 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. Most vests that require soaking are made from wool or micro-fibre and feature a non-toxic gel, which holds water, whereas the freezer-style vests hold cool packs. To understand the principles of a water-soaked vest, you might like to read an explanation of the thinking behind the E-Cooline cooling vest. This vest contains a ‘high-tech’ fleece that absorbs up to two litres of water. The vest is worn over regular clothing, and the fleece is capable of binding water within seconds so there’s no wetness or drop formation on the quick- drying outer fabric. In high temperatures, the fleece releases the water through evaporation, cooling the 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 so they can enjoy their daily life. The advantage of this type of vest is that tap water is used for it, the vest is lightweight, and the manufacturer claims that the cooling effect is long lasting. Also, because the cooling mechanism is based on natural evaporation, the vest doesn’t have to be chilled in a refrigerator or freezer.
Other options Cooling hats and accessories such as neck, head and wrist wraps generally work according to similar principles. The 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. Most neck, head and wrist wraps also have to be soaked.
For more information Call MS Connect on 1800 042 138 for information about cooling garments. For information about the E-Cooline cooling vest, go to www.e-cooline.com.au
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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 exercising regularly because it can lead to improvement in strength, mobility, balance, bowel and bladder function, mood, and fatigue reduction. However, fatigue comes with its own problems, because you might have trouble contemplating heading to the gym when you can barely drag your head off the pillow. When the problems to do with heat sensitivity, stiffness, tremors and issues of balance and mobility are added to the situation, it’s easy to understand why the last thing you feel like doing is exercising. “One of the secrets to engaging in regular physical activity is to find something you enjoy doing,” says Tracy Martinuz, Exercise Therapist with MS Australia – ACT/NSW/VIC. “That way, you look forward to the activity rather than view it as being a chore.” In general terms, if your chosen activity doesn’t cause your symptoms to worsen, it’s probably suitable. However, people who have MS are cautioned to regulate their physical activity. “Don’t follow the mantra of ‘No pain, no gain!’” Tracy says. “Listen to your body, because if you push yourself to exhaustion, you might feel fatigued for days afterwards.” Tracy advises that if you exercise in the morning, it’s reasonable to expect to feel fatigued that afternoon. “But if you still feel fatigued the following afternoon, you’ve done too much. I’d recommend breaking up your exercise – for example, if you’ve been exercising for an hour, consider doing 30 minutes in the morning and 30 minutes in the afternoon.” It’s important not to allow symptoms such as fatigue and mobility problems cause you to stop exercising. “Exercise is a good mood lifter. If the activity includes a class or a club meeting, it becomes a social activity, which is great for preventing or easing depression,” Tracy says. Following are outlines of some exercise options you mightn’t have thought of.
Aquaerobics Many people who have MS find that water-based exercise classes suit them better than exercising on land. Being in water not only entails a natural resistance that can lead to improvement in aerobic fitness and strength development; it’s gentle on joints. Heated pools mightn’t suit you if you’re prone to heat sensitivity, but if you go in a non-heated pool, you can stay cool, especially during summer. If you do go in a heated pool, check whether it’s regulated to maintain a temperature of between 25 and 34 degrees Celsius.
Bowls There’s a lot to love about this sport, because it’s a low-impact form of exercise undertaken in an environment that entails an opportunity for social interaction. It’s also a sport in which people who have a physical disability can compete with able-bodied competitors. Changes to the rules aren’t required, and competitors can compete on either normal grass or a synthetic surface.
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Canoeing and kayaking If you love water, taking to it in a canoe or kayak can be a wonderful way of enjoying the great outdoors and getting some exercise. Both sports suit people who have a disability, because everyone is required to wear a buoyancy aid, and you can engage in them with family members or friends. Both sports have a variety of options, from entering competitions to having pleasurable days out on rivers. Australian Canoeing is the national organisation that’s responsible for promoting paddle sports. Visit www.canoe.org.au/ to find out about clubs.
Cycling This is another form of exercise you can enjoy with family members or friends. Many public parks and scenic areas have bikes for hire so you can try out the activity before you spend money on a bicycle. People who have a balance or mobility problem can opt for a bike that has wider wheels, or a trike (tricycle); in fact, London Paralympic gold medallist Carol Cooke rode a trike for exercise and pleasure long before she took up para-cycling competitively.
Handcycling You use your arms to power a handcycle, but apart from that requirement, you can use a handcycle in the same way you use a bicycle. A wheelchair can be converted by attaching gears and handlebars, which you use in a push– pull movement. You not only get outdoors; you get a cardiovascular workout. For more information, go to the Cycling Australia website, www.cycling.org.au, and look under the ‘Get involved’ tab for ‘Para-cycling’.
Pilates This form of exercise therapy was developed by Joseph Pilates, who designed it for people who acquired a disability during World War II. The aim is to use slow, repetitive movements to increase core strength, muscle tone and flexibility.
Table tennis This sport can be played either socially or competitively whereby you can aspire to play at international level. It’s suitable for all age groups, and people who have mobility issues can play it seated. If you have a problem with your grip, a bat can be strapped to your hand. Table tennis is great for improving concentration, coordination and the speed of your reactions. Visit the Table Tennis Australia website, www.tabletennis.org.au/, for more information.
Yoga Several styles of yoga are practised, but the aim of all of them is to increase flexibility, reduce stress and promote relaxation and wellbeing by way of a combination of exercises, breathing techniques and meditation. Please discuss how suitable the yoga style is for your MS symptoms. Iyengar yoga, for example, has been a preferred form of yoga for people who have MS, because a qualified instructor can easily modify it for the individual MS client.
Martial arts These types of activity entail a variety of disciplines such as judo, karate, kung fu and tae kwon do. They’re for helping build strength and coordination and can lead to improvement in
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self-discipline and concentration.
Swimming Water entails bodily support, so swimming can be suitable for people who have MS. It’s also a form of exercise you can do alone, or you can join a club and swim competitively.
Tai chi Although this is a martial art, it’s worthy of separate inclusion because it’s a gentle form of exercise and meditation that can lead to stress reduction and balance improvement.
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. Call MS Connect on 1800 042 138.
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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 that keeps a relationship together, according to Dr Gary Fulcher, a Clinical Psychologist who works with people who have MS. “The importance of intimacy cannot be emphasised too much,” he says. “It makes us human.” Meanwhile, Dr Elizabeth McDonald, Medical Director of MS Australia – ACT/NSW/VIC, points out that an MS diagnosis can be the trigger for reactions of grief, anxiety and depression, which can lead to a lowering of self-esteem and reduction in self-confidence. “These feelings can cause reduced sexual interest and withdrawal from sexual activity. People with MS can find it difficult to see themselves as being ‘sexual’, that is, having sexual thoughts, desires and needs, and at the same time, they identify with the role of a person who has a chronic illness.” These feelings can be complicated if the person’s circumstances change. “Disability can lead to a person’s dependency on other people for his or her personal care. If the partner provides the care, it can be very difficult to separate the role of carer from that of intimate lover. Also, people with MS who have carers and providers of nursing and domestic services intruding into their home can be left feeling exposed in all areas of their life, and have little private time.” Gary explains that people who have MS and who need personal care might find they receive a lot of ‘functional’ touch. “An example of functional touch is when another person applies sunscreen to your face. That type of touch is very different from intimate touch, and yet for a person with MS, functional touch might be the only touch they get; they miss intimate touch, which is about connecting 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 caressing, erogenous stimulation, oral sex, and penetrative sex. “Disability might cause a reduction in the person’s capacity to do some of those things, but some can be maintained.” By way of an example, Gary explains that although sensation in the clitoris or penis might diminish, introduction of a sexual aid such as a vibrator might trigger orgasm. “If the couple
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are going to use that type of aid, the relationship has to be an intimate one that includes good communication.”
Problems that can arise 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.
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.” Returning to the connection can be achieved by way of other forms of intimate behaviour such as cuddling, kissing, holding, stroking and massaging. “Be mindful during those moments: focus on the experience of holding each other, such as the warmth, the smell and the human closeness.” Elizabeth says there are many reasons to feel positive, because due to increasing awareness of the effects of MS on sexuality, the management and treatment options that are available have greatly improved. She advises people who have MS to seek help from health professionals. “Although bringing up the topic can be difficult and embarrassing for the person who has MS, it can also be so for some doctors and health professionals.” It’s important to find an MS-healthcare provider with whom one feels comfortable, or to seek a referral to someone who specialises in this area. It can also be helpful to see the healthcare professional together as a couple and to bring pre-written questions. “Sexuality is an important aspect of human life and must not be neglected when the impact of MS on an individual is being considered,” Elizabeth asserts. “Increasing awareness and acknowledgement of the effects of MS on sexuality have led to great improvement in the management and treatment options that are available for people who have MS and who are experiencing difficulties in this area.”
If you’re single
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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 MS Australia – ACT/NSW/VIC, recommends they make the disclosure before the relationship becomes intimate. “It’s much better to disclose that you have MS than to risk having your body fail you during a moment of intimacy,” he says. “If you’ve discussed the fact that you have MS with the person before you’re intimate, he or she will know what to do.” Gary recommends providing the partner with information such as in the publication entitled MS in Focus: Intimacy and sexuality, published by the Multiple Sclerosis International Foundation. Meanwhile, even though people mightn’t have a partner, they need intimacy, and using sexual surrogates is a way of achieving connection. Scarlet Road, a documentary film released at the end of 2011, featured the late John Blades, a Sydney man who has MS. It was an examination of use of sexual surrogates by people living with a disability, and featured a sex worker from the Touching Base organisation, the members of which help people who have a disability and sex workers connect with each other. To contact Touching Base, go to www.touchingbase.org/
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.
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WHAT’S NEW: MS-RELATED RESOURCES
E-Books The MS Library has a small collection of e-books that are available for loan and can be accessed if you have a computer and internet connection. E-books can be read on a computer, an e-reader or a smartphone. As is the case with lots of technology, not all e-books are compatible with all e-readers. The e-books we have purchased are not compatible with Kindles and some other proprietary e-readers, but they can be read on most other e-readers and on computers, iPads and many smartphones. If you would like to access our e-book collection, please contact the MS Library.
On the shelf
Fighting fatigue in multiple sclerosis: Practical ways to create new habits and increase your energy by Lowenstein, N. Demos Health
This book was reviewed as an e-book in the Spring 2011 issue of Intouch, and we now have print copies available for loan. Fatigue is one of the most common symptoms of MS and can have a huge impact on the quality of life of people who have MS as well as on their family. The goal of this book is to assist people who have MS to learn techniques for helping themselves have more energy to do the activities they enjoy.
Living well with MS: Lifestyle, diet and complementary therapies by the US National MS Society Website: www.media-server.com/m/p/4yebgxno
The focus of this webcast is on what ‘living well’ means to people who are living with any type of MS. Before the webcast occurred, the moderator received more than 1,000 questions from interested people who have MS, and many of the questions are explored during the discussion.
The issues discussed are as follows: • Neuro-rehabilitation strategies • The many benefits of exercise • The importance of managing depression • The value of evidence-based research • Nutrition • Managing cognitive symptoms
The webcast concludes with a discussion about the challenges involved in managing progressive MS.
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Sink into sleep: A step-by-step workbook for reversing insomnia by Davidson, J. Demos Health
Insomnia can be a serious problem for individuals, their family members and their community. In this book, Dr Davidson describes the biology that underlies sleep processes and the risk factors for insomnia, and addresses factors that have an impact on sleep, such as chronic pain and depression. The focus of the book is on using non-pharmacological treatments for insomnia, but Dr Davidson also outlines the benefits and disadvantages of sleep medications. The topics discussed in the chapters are as follows:
• Will this book help you? • What is insomnia? • What type of insomnia do you have? • Things to take care of right away • The essential elements of sleep therapy • What to do with your mind • Maintaining your progress
Dr Davidson practises clinical psychology within a primary healthcare team.
You don’t look sick! Living well with invisible chronic illness by Selak, J. and Overman, S. Demos Health
This book is co-authored by Joy Selak, who’s been living with several chronic illnesses since the late 1980s, and Steven Overman, Professor of Clinical Medicine and Division Chief of Rheumatology at the University of Washington’s Northwest Hospital. The book is divided into four phases: ‘getting sick’, ‘being sick’, ‘grief and acceptance’ and ‘living well’. Each section includes stories written by both the authors so that readers get the perspective of the patient and the physician. The authors discuss the following topics:
• Pills, procedures and paperwork • ‘Disabled but not invalid’ • Listening to your body and finding your own balance • Taking control of your own wellbeing • Learning to be honest about how you’re feeling
The book also includes a list of useful resources.
To borrow books or for assistance in accessing online resources, call the MS Library in Blackburn, Victoria on (03) 9845 2809 or email [email protected] Contact your local bookshop to buy copies of printed books.
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End
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