SPR/SUM 2014

ISSN 1833-8941 Print Post Approved: 100003204

fitness pays off Read Chelsea’s story on page 4

Inside ALSO 2014 MS Go cognitive for gold issues winners How one man faced his challenges NDIS: WHAT WE NOW KNOW www.ms.org.au SEE PAGE 12 › CEO’s message

What a highly successful year it’s been. Our Seeing MS campaign gave the disease more ‘visibility’ and we’ve captured learnings about the National Disability Insurance Scheme. You can read about that on page 12. We can also celebrate a host of achievements against an ambitious agenda of ‘step change initiatives’ and we have had a profitable 2013−2014 financial year. That means all the planning and restructuring we’ve been undertaking is paying off. During the year we revitalised our brand from MS Australia – ACT/NSW/VIC to MS, to signal our change in direction and unique brand positioning. Next year, we will proactively build on the success of the Seeing MS campaign by following it up with a targeted campaign on services. It’s also terrific that our new website design is underway and you’ll be pleased to hear we have consulted extensively with the MS community. But I want to take this chance to sing the praises of our dedicated staff and volunteers. They have worked Publisher: Multiple Sclerosis Limited ABN: 66 004 942 287 tirelessly and passionately to support people affected by multiple sclerosis and I thank Editor: Toni Eatts them. And while it is still a few weeks away, on behalf of all us at MS, I want to wish Advertising enquiries: [email protected] you and your family a merry Christmas and a happy New Year. Privacy Policy: Visit www.ms.org.au for our full policy document. ISSN: 1833-8941

ACT Gloria McKerrow House 117 Denison Street Robyn Hunter Deakin ACT 2600 Chief Executive Officer, MS Tel: (02) 6234 7000

NSW The Studdy MS Centre 80 Betty Cuthbert Drive › Lidcombe NSW 2141 News from MS Advisory Council Tel: (02) 9646 0600 Let’s end the year by acknowledging that during 2014 we have worked on Victoria The Nerve Centre these important projects with the MS Board and the MS leadership team: 54 Railway Road > Identified opportunities to improve the presentation and functionality of the Blackburn ViC 3130 Tel: (03) 9845 2700 MS website. > Identified specific needs of carers and those affected by MS who live in rural areas. MS Connect: 1800 042 138 (free call) > Gathered input from a wide range of people via direct contact, emails and monitoring Regional offices: Visit www.ms.org.au all MS Facebook sites and MSAC’s own Facebook page to identify emerging and click on ‘Contact Us’. common themes, discussing them and passing concerns onto the Board.

For the coming year, we’ll focus on developing an education program for doctors in order to increase the likelihood of an earlier diagnosis of multiple sclerosis for people Disclaimer: Information and articles contained with the disease and examine the impact of the National Disability Insurance Scheme. in Intouch are intended to contain useful and accurate information of a general nature for the We wish you and your family a happy and healthy festive season. 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 Andrew White, Chair, MSAC Victoria readers must seek their own medical or legal advice as might be appropriate. Rob de Ridder, Chair, MSAC NSW

Advertising disclaimer: Multiple Sclerosis Limited does not endorse any one product or service over Get involved – Contact MSAC another; nor do we receive any commission on Email: [email protected] • Telephone: (03) 9845 2794 sale of items. Consumers are encouraged to discuss the options for exchange or return at the time of purchase, with a specific supplier, because Multiple Sclerosis Limited is not liable in the event the product is not satisfactory. › Contents © Multiple Sclerosis Limited 2014 3 News HEALTH & WELLNESS 4 My story: Chelsea Rivett 8 Recognising cognitive issues 12 NDIS update 14 Events LIFESTYLE www.facebook.com/msgetinvolved 10 2014 MS Go for Gold MS COMMUNITY Scholarship winners twitter.com/msgetinvolved 5 MS Community: Inspiring bequests FUNDRAISING www.pinterest.com/msgetinvolved 6 Volunteers: Thanks for your help 13 MS Mega Swim dates instagram.com/msgetinvolved 7 Community fundraising 2 intouch spring/summer 2014 www.ms.org.au www.ms.org.au spring/summer 2014 intouch 3 NEWS Cycling stars, Brad McGee and Ben Kersten. › MS Gong campaign

By the time you read this, our 2014 MS Sydney to the Gong Bike Ride will be over. This cycling event is the largest mass participation event on the NSW cycling calendar and one of our key fundraising events. Cyclists chose to ride either the long 90-kilometre route from Sydney Park, St Peters, or a shorter 58-kilometre course from Engadine. And, we couldn’t hold the event without the help of some 400 volunteers who turned up early on Sunday 2 November to put out the signs along the route and organise marquees and water supplies to ensure that riders would be made comfortable at the rest stops. At the end of September, Carol Cooke, AM, announced Cycling greats and MS Gong Ride Ambassadors Brad she would ride. Carol is a well-known member of the MS McGee and Ben Kersten were our special guests at the community and a Paralympic Gold Medalist, a World Cycling corporate breakfast held in August to kick off the campaign Champion and 2013 Victorian Cyclist of the Year, beating to raise $3.8 million. Cadel Evans and Simon Gerrans. Carol agreed to head up It was held at the Menzies Hotel, in the Sydney CBD, and Team MS. attended by about 120 riding enthusiasts. The breakfast was We were also pleased that strong fundraising teams supported by ride sponsors QBE and SBS TV and included such as SBS BA Cycling, Soft Cogs and Sylvania BMW other special guests, former Sydney Swans player Jared Top Raisers were battling it out for the top spot. The Crouch and Olympic and Commonwealth Games champion winning teams and high-fundraising individuals will be cyclist Kate Bates. SBS news presenter Ricardo Goncalves announced on 1 December. acted as the master of ceremonies. To see how the ride went, go to www.msgongride.org.au

› Progressive MS research › MS Readathon turned 35 T here are more than 1 million people in the world living with a progressive form of multiple sclerosis and recently the International Progressive MS Alliance was formed to invest funds into researching the condition. This global initiative brings together the world’s leading experts in multiple sclerosis and is coordinated by the MS International Federation. It includes MS Research Australia and similar organisations in other countries. The alliance recently awarded its first round of 22 research grants to investigators in nine countries.

The projects will be directed by scientists at leading Stephen Papadopoulos research institutions worldwide and includes Australian (at left), Will Kostakis and students from Kincoppal- recipient, Dr Steven Petratos from Monash University. Rose Bay, School of the This first round of funding is the start of an ambitious Sacred Heart. program that will see a total of €22 million invested into progressive multiple sclerosis research over the next six years. Some 3,500 people signed up for our annual MS Go to www.msra.org.au/finding-answers-progressive-ms Readathon, which turned 35 this year. The participants came from Victoria, NSW, ACT, Queensland and Tasmania and raised more than $260,000. Encourage friends to subscribe now! The first MS Readathon was held in 1979 when If you’re reading Intouch, it’s most likely because you Malcolm Fraser was Prime Minister of Australia, and this have subscribed to it. Thank you! But some people are year many parents who took part then registered their not aware that if they want to keep receiving Intouch for children to take part this year. free we need their contact details, so encourage your Three decades later, students at Sydney’s Kincoppal nearest and dearest to subscribe. Primary School hosted a party to celebrate the 35th Just go to ms.org.au or call MS Connect on 1800 year. More than 350 students took part in the event 042 138. And remember, if you want all the news, you which included a webcast from their school auditorium also need to request to get the Intouch eNewsletter and presentations from our MS Ambassador Stephen which we send via email every month. Your next printed Papadopoulos and Will Kostakis, a Penguin Books Intouch magazine will arrive by post in March. Australia children’s author. But the star was Bosko, our MS Readathon mascot.

2 intouch spring/summer 2014 www.ms.org.au www.ms.org.au spring/summer 2014 intouch 3 MY STORY › Better than ever Chelsea Rivett is stronger and fitter thanks to being diagnosed with multiple sclerosis.

In 2009, Chelsea was holding down a part-time job at Telstra ahead. “I was determined to complete it even if I and raising boys aged 18 months and four years when she had to shuffle.” experienced her first symptoms. “I was sleeping a lot and felt As it turned out, she finished the circuit in a respectable numb along my left side from my head to my toes,” Chelsea time of two hours and 28 minutes. “The last few kilometres says. “I also had problems with my vision and hearing.” were a real struggle but I felt so proud of myself when I ran It didn’t take long before Chelsea, now 33, was diagnosed onto the MCG. I’m getting teary thinking about it.” with multiple sclerosis. “By then I’d read about the disease Why does Chelsea push herself? “I want to be a positive and had been depressed by the idea of what might happen female role model for my boys. Being fit also helps me to be to me. I worried that I mightn’t be able to be active with my able to keep up with them.” young boys.” As a bonus, her body shape has changed and her Fortunately, Chelsea’s GP assured her that he knew other increased fitness helps her fight fatigue. “I rest when I need it. people with multiple sclerosis who were living healthy lives. In I’m happy with how I am now. Regular exercise suits me.” addition, her symptoms had disappeared enough for her to feel as though she could influence her wellbeing. If you would like to share your story, email “I decided to do my best to remain healthy. I quit smoking, [email protected] or phone (02) 8484 1316. stopped eating sugary treats, started eating healthy food and began exercising every day.” Prior to diagnosis, Chelsea had walked three times a week and worked out occasionally, but now she got serious. So serious, that she started training with Paul Borchers, from Prime Motivation Fitness, in her hometown of Ballarat. As first she didn’t reveal she had multiple sclerosis but the summer heat forced her hand. “I have to be careful around fatigue, but when I mentioned it Paul didn’t pander to me. He trusts me to know my limits.” Chelsea appreciates this because Paul has helped her to discover a physical, mental and emotional strength that she never knew she had. “For 10 years, I had wanted to run in the Melbourne Marathon. I started entering fun runs before I was diagnosed, but with Paul’s help I did a 15-kilometre run and then aimed for the 2013 Melbourne Half Marathon which is 21.1 kilometres.” Paul designed a program and Chelsea followed it until October when she went on holidays with her husband Tim and sons, Thomas, now aged nine and Benjamin, six. “While I was away I started to limp on my right side but I kept it to myself.” The marathon was scheduled for 10 October and even Chelsea’s fitness though Chelsea knew she was having a relapse she went routine paid off.

› Trainer is proud When Paul Borchers started working with Chelsea Rivett stronger. “She now understands what she’s capable four years ago he could see her physical limitations. of and what she has the possibility of achieving. She’s “She definitely had issues in the early days,” says Paul, a really come a long way towards achieving her healthy personal trainer with Prime Motivation Fitness. “She found lifestyle goals.” some exercises more difficult than others, in part, due to Paul runs Prime Motivation Fitness with a business the symptoms of her multiple sclerosis. But as time has partner and he says they both consider Chelsea to be one gone on, her limitations have become less noticeable.” of their outstanding clients. “We’re so proud of her and As well as becoming physically stronger, Paul has how she’s dedicated herself to achieving the goals she watched Chelsea become mentally and emotionally has set, such as running in the Melbourne Half Marathon.”

4 intouch spring/summer 2014 www.ms.org.au www.ms.org.au spring/summer 2014 intouch 5 MS COMMUNITY › Thanks to generous men

It is humbling and wonderful when our organisation receives a bequest, and recently we have benefitted from › If you are the generosity of two remarkable men, David Brandon and John Bedwell. inspired... David’s daughter, Diana, advised us To find out how you can leave a that her father passed away just shy bequest, contact Jacqui Sumner or of his 99th birthday. She described Donna Bradley-Robinson on 1800 him as a kind, compassionate 443 867 or [email protected] man who was a veteran of World You can request a copy of our War II. He fought in the Dutch Army free information booklet, Your for his country of birth and was held Future in Your Hands. This booklet as a prisoner of war by the Japanese is easy to understand and includes for three years. His survival was a information about some of the legal testament to his strength and courage. issues you must consider when Although David wasn’t a wealthy David Brandon writing a will. man, he was dedicated to helping In addition, it discusses issues others less fortunate than himself and such as guardianship and powers this was reflected in his generous long-time supporter of people living of attorney. and long-standing support of the MS with multiple sclerosis through the The booklet also talks about organisation, as well as a number of John Bedwell Trust and the J.G. our special group of benefactors, other charities. In fact, his legacy was Bedwell Endowment. John’s generosity the Callistemon League, which made up of 48 charities. was also reflected in the number of honours the generosity of “To most people who knew him, charities he supported throughout his compassionate people such he was a true gentleman who was life and in his will. as David and John. intelligent, cultured and, above all, The support from benefactors such had class,” says Diana. “He was as David and John enables us to my hero and will always be plan ahead and continue to provide remembered for his kind and caring support and services for the people nature. He was a much-loved father, with multiple sclerosis who rely on our grandfather and great-grandfather to organisation. These bequests help us my daughter’s three beautiful children. to provide real assistance to present He will never be forgotten.” and future generations of people living Like David, John Bedwell was a with multiple sclerosis.

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4 intouch spring/summer 2014 www.ms.org.au www.ms.org.au spring/summer 2014 intouch 5 MS COMMUNITY › A big thank you › As the year draws to a close we want to thank all the Shop manager enjoys generous, warm-hearted people who have given up their time to help people affected by multiple sclerosis. ‘making a difference’ Many people living with multiples sclerosis rely on the volunteers who support our programs including: Heather Andronicos • the Community Visitors Scheme where volunteers visit socially isolated older people in NSW and Victoria • MS Peer Support Volunteers where people with multiple sclerosis take phone calls from other people living with the disease or organise face-to-face support • volunteers who support MS staff with administrative tasks, assist MS social programs or take a person with multiple sclerosis shopping or to the doctor • people who volunteer on our fundraising events • MS Ambassadors who help to educate the community about multiple sclerosis.

Our new MS Community Shop in the Melbourne suburb of Hampton has been establishing itself with the locals since it opened in February. › “We’ve been increasing our footprint in the Shop volunteers community by networking with other retailers in the The 394 volunteers who worked in our 13 MS street,” says Ara Levonian, Retail Operations Manager Community Shops during the 2013–14 financial for MS. “Sales have been steadily increasing and the year helped us raise $267,278 to help people shop has achieved its financial goals thanks to Heather living with multiple sclerosis. Andronicos and her volunteers.” This was up from $250,400 in 2012–13, making Heather, who is manager of the Hampton MS Community a year-on-year increase of 6.7 per cent. Shop, oversees 34 volunteers. “They’re such wonderful These generous volunteers donated more than people to give up their time,” she says. “I’ve also been pleased 63,600 hours of their time for which we are truly grateful. that the residents of Hampton have been providing us with We are always looking for volunteers to support our quality donations and buying bargains for themselves.” MS Community Shops located in Bendigo, Fairfield, Prior to accepting the role of manager, Heather worked for Kew, Malvern, Melton, Mildura, Monbulk, Daylesford, a corporation that specialised in frozen yogurt. “The MS shop Malvern, Geelong and Hampton, in Victoria, and in is different from that but I feel comfortable in retail. I also love Tuggeranong, in the ACT. the fact that what I’m doing makes a difference to the lives of If you are interested in working in one of our people who live with multiple sclerosis.” shops, please call MS Connect on 1800 042 138.

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Win first prize in our latest Art Union and you could drive away in a brand-new BMW 316i F30. The prize includes all on-road costs and delivery, but comprehensive insurance isn’t included. Or you could elect to receive $49,000 worth of gold bullion to spend on whatever you choose. Enter and you will also be in the running for our fabulous second and third prizes: 2nd PRIZE: a luxurious 4-night stay for two people at Coral Sea Resort, Airlie Beach, Queensland, including return economy domestic airfares. 3rd PRIZE: a 7-night stay for two people at Poppy’s on the Lagoon, Vanuatu, and return economy airfares. Join Club MS and enter our exclusive draw to win 2 oz of GOLD BULLION. Ticket prices start at only $15 so that you’ll have the opportunity to both win one of these incredible prizes and help the MS organisation provide its vital support to people who are living with multiple sclerosis! The competition will be drawn on 12 December 2014.

TM For more information and to purchase tickets, visit www.msraffles.org.au or Freecall 1800 287 367 Art Union Permit Numbers: ACT R14/00275, NSW GOCAU/1591, VIC 12258/14

6 intouch spring/summer 2014 www.ms.org.au www.ms.org.au spring/summer 2014 intouch 7 How to join the gym The gym is open from 9am to 3pm Monday to Friday. Call MS Connect to get a referral to an MS physiotherapist and be MS COMMUNITY briefed on the fees. Once you have completed a physiotherapy › assessment you will be allocated Lidcombe gym gets a facelift a time to attend. For further information on our MS Thanks to Helen Paul and her carer refurbishment began soon after. “It’s exercise programs contact Geoff Allen (pictured above), the gym at terrific that Helen can see the benefits MS Connect on 1800 042 138. the Studdy MS Centre, Lidcombe, has of the work we put in. It’s opened up been enlarged and refurbished. the space to make the gym more user Helen was diagnosed with multiple friendly and easier for staff to supervise.” sclerosis in March 2011 and a few The donation also allowed for a months later she came to stay with massage chair to be bought and now › Party people Geoff and his wife, Jenny. Geoff is many people finish their exercise session a Community Pastor at Hope Point with a massage before they go home. Church in the Sydney suburb of “We’re grateful for Helen and Georges Hall. Geoff’s help,” says Tracy Martinuz, MS Helen began attending the gym in Exercise Therapy Coordinator. Tracy and 2012 and her visits provide an important Alejandro Vangea, MS Physiotherapy chance for her to socialise with other Assistant, are our ‘faces’ at the gym and people with multiple sclerosis, as well behind the scenes Susan Tame, Senior as improve her fitness. This prompted Manager MS Care, and Angela Geltch, These people raise $37,000 for Geoff and Helen to hold fundraising MS Practice Leader Metro NSW, also people living with multiple sclerosis. breakfasts in 2012 and 2013. “We championed the expansion. From left, they are Amanda donated the funds to the MS “We’re proud to offer more exercise Campbell, Jim Rigogiannis, Stan organisation,” Geoff explains. “But this classes as a way of supporting the Longinidis, Evvie Makris and an year, being regular visitors to the gym, wellbeing of people with multiple Elvis impersonator. Each year, we could see the need there.” sclerosis,” Susan says. Meanwhile, Jim and Evvie organise a charity So in May, the pair organised a Angela says Tracy and Alejandro “make event and this year they hosted breakfast and raised about $8,000. exercising fun because they understand a Masquerade Party. Stan and Local businesses donated various that people with multiple sclerosis find ‘Elvis’ were part of the night’s prizes and Asset Group Solutions came the social interaction at the gym just as entertainment and Amanda, is on board as a sponsor. “Our church important as the exercise.” an MS Ambassador. Almost provided the venue, support, advertising Tracy points out that programs 200 people donned their finery material and volunteer labour.” Geoff are tailored to suit each person’s and turned up at Kinisi Live, in and Helen were thrilled when the specific needs and abilities. Richmond, Melbourne.

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6 intouch spring/summer 2014 www.ms.org.au www.ms.org.au spring/summer 2014 intouch 7 Health & wellNESS › Recognising cognitive issues

When you look at Mike Hemingway you see a warm, friendly, family man who walks with a colourful cane. You don’t see the high-powered financial markets executive he used to be or the damage multiple sclerosis has done to his cognitive abilities. Even if you speak to him, you still won’t notice the damage the plaque has wreaked on his brain. He’s articulate, he’s knowledgeable, he’s affable and sure, he may take his time to think carefully before he replies and he may struggle for a word occasionally, but we can all do that. However, on 25 August 2013, Mike retired from his position as Director, Market Insights with the National Australia Bank, Mike and Katrina aged 51 – at least 10 years before he’d planned. Hemingway. Mike was diagnosed with relapsing-remitting multiple sclerosis in 2003 and he’s lived with nausea, dizziness, balance problems, numbness, hypersensitivity and fatigue while he raised two children and kept his marriage to Katrina strong. He also continued to thrive in his career thanks to Mike spent one of those weeks holidaying in support from his managers at the bank. Tasmania with his family. “I would just fall over for no “At work, I discussed those symptoms and they always reason and one night at dinner I had trigeminal neuralgia said, ‘just tell us what you need’,” Mike says. [intense pain in the face] that lasted 45 minutes.” In the early years following his diagnosis, Mike had a rough On his return to Sydney, Mike’s neurologist phoned with time with relapses but things settled down. Then in January bad news about his latest MRI. “Katrina and I went to the 2013, problems with the medication he was taking meant he appointment and it was really confronting. We talked about had to switch drugs. “I couldn’t take anything for six weeks work no longer being an option. I was doing the standard and the multiple sclerosis took it as a free kick.” 11 hour days and the neurologist was worried about that.”

8 intouch spring/summer 2014 www.ms.org.au www.ms.org.au spring/summer 2014 intouch 9 In the months that followed, Mike began to realise that this latest relapse was affecting his cognition. He had suspected changes prior to this relapse but hadn’t experienced symptoms like these. “In the office, I’d always been the ‘go-to guy’. I knew the jargon, I was quick with words. They were my ‘sword’.” But Mike noticed that in meetings, even though his colleagues were discussing subjects that he knew well, he didn’t have anything to add. “It might be common for many people to forget words and names but when I started to do it, I knew it was uncommon for me. The word loss was such a bloody nuisance I started to read about cognitive issues.” Mike developed strategies to cover his difficulties. He would enter a room and scan it to make sure he remembered the names of everyone present; he took notes about everything; set himself electronic reminders; and wrote long lists. But some things he couldn’t plan for. “A colleague might › Cognitive testing stop me as I walked by their desk and ask me something. Two days later they might remind me of what I said and I’d Only about 50 per cent of people who have multiple have no memory of it.” sclerosis will experience cognitive difficulties, and for For a person who had earned his living and defined himself most people the impairment will be mild. by his mental agility, the symptoms were frightening. “This Melanie Tucker is a clinical neuropsychologist who was the one symptom that I didn’t discuss with my boss.” has 10 years of experience working with people who He also had to consider the impact the loss of cognitive have multiple sclerosis. ability would have on his wife, his family and their financial Melanie points out that she has worked with dozens future. “Katrina saw what was happening. She’d talk to me of people living with multiple sclerosis who believe they when I got cross because I’d misplaced something.” have cognitive difficulties but when investigated, it turns A turning point came when he consulted a clincial out their thinking and memory problems are due to neuropsychologist. “I tested well in the areas not affected depression, not multiple sclerosis. (Consult your GP if by multiple sclerosis but my speed of processing was down you think you may have depression as it can be treated.) in the bottom end of average to impaired.” “Or they have no problem at all and mistake what In simple terms, the ‘engine’ of Mike’s thoughts struggles most people deal with for a multiple sclerosis-related to process information or rifle through his memories for a difficulty,” Melanie says. “The most common cognitive quick response. “It’s as though someone has gone into my problems people with multiple sclerosis have centre room of memory files and juggled them around. I’ll eventually around how quickly they are able to think and respond find what I’m looking for but it takes time.” and whether they are able to recall newly learnt It also knocked Mike’s confidence. “I was aware for a information. They can recall information they learnt at couple of years that my cognition was slipping but it wasn’t university but not something they were told yesterday.” something I talked about. I felt isolated and when I did open Testing cognitive functions can take up to four hours up, I realised that I wasn’t the only one to deal with this.” and involves written tests, verbal tests, and learning Fortunately, Mike has income protection insurance so information and recalling it. he was able to retire. He has compensated by keeping “The tests give you a full understanding of your as physically active as he can and making sure he reads cognitive strengths and weaknesses and how to about complex subjects, such as quantum physics, that compensate for any changes. It can also help the stretch his mind. person’s family and friends understand what is He and Katrina also led a team in a fundraising walk for happening and how to help them manage it.” MS Research Australia. The group raised more than $200,000 walking coast to coast across Britain, in September. If you suspect you have cognitive issues, Mike If you are worried about your cognitive function, recommends you do some research, speak with your Melanie recommends that you: neurologist, and consider getting an assessment from > Ask a trusted friend or family member if they have a neuropsychologist. “I found occupational therapists noticed that you are having difficulties. also have good suggestions for strategies such as alarms > Get an assessment from a clinical neuropsychologist. and calendars. It’s important to find coping mechanisms You can do this by asking for a recommendation that work,” he says. from your GP. If you are interested in Mike and Katrina’s coast-to-coast > Phone MS Connect on 1800 042 138 and walk, go to their blog at http://c2cmswalk.org ask for advice.

8 intouch spring/summer 2014 www.ms.org.au www.ms.org.au spring/summer 2014 intouch 9 Go for Gold › May their dreams come true We want everyone with multiple sclerosis to be able to fulfil their dreams, which is why we award MS Go for Gold Scholarships. Congratulations to our winners.

› Van-Thi Le and her husband, Birthday celebration Truong, celebrate his mother’s 100th birthday in Vietnam. Last year, an MS Go for Gold Scholarship allowed Van-Thi Le and her husband, Truong, to return to Vietnam to celebrate the 100th birthday of Truong’s mother. Van is a Vietnamese person living with multiple sclerosis. She regularly attends the CALD Multicultural MS Peer Support Group in Footscray which is how she heard about our MS Go for Gold Scholarships. The group is a meeting point for people of ethnic backgrounds who have multiple sclerosis, especially people who have English-language difficulties. They share their news and information in their first language, or have other members act as ‘interpreters’. Although Van has limited English, she says she loves the meetings and the opportunities “to be with other people with multiple sclerosis”. The disease is not well understood within the Vietnamese community which means the peer support group is one of the key ways Van learns about multiple sclerosis and how she can manage symptoms. Van and Truong migrated to Australia in 1995 to be with their son and daughter. In 2005, Van experienced numbness and weakness down the left side of her body and was subsequently diagnosed with multiple sclerosis. She now walks with a slight limp and manages celebration of my mother-in-law’s birthday which her symptoms by attending her local swimming pool five was something we’d dreamt about but never thought days a week. She also tries to maintain a positive outlook would come true.” and approach life with a smile. Van and Truong also had the chance to catch In 2013, Van’s mother-in-law celebrated her 100th up with other relatives and see how their homeland birthday and Van and Truong dearly wanted to be there, had changed over the years. “I love my mother-in-law but the trip was beyond their budget. Van was thrilled to like a sister and it was wonderful to spend this important be awarded the cost of the plane tickets. time with her,” Van says. “Going to Vietnam with my husband was absolute Van was awarded a 2013 MS Go for Gold Scholarship happiness,” Van says. “We were able to participate in the under the travel category.

› Thanks, Mega Swim!

THE ms Go for Gold Scholarship program is funded by expanded to include squash and racquetball events. The MS 24 Hour Mega Swim, Squash and Racquetball events. events are a unique opportunity for swimmers and squash The MS 24 Hour Mega Swim was founded by MS and racquetball players, businesses and community groups Ambassador Carol Cooke, AM, in 2001. Carol is a keen to get involved. Of course, none of it would be possible swimmer who worked with some friends to conduct a without their family and friends and other people who swimming event at Fitzroy Pool, in Melbourne. The club sponsor and support them. Each and every one of you raised $22,000 and the event became so popular it help to make the dreams and ambitions of our scholalrship evolved into today’s highly successful MS 24 Hour winners come true and we thank you all! Mega Swim program. To find out about upcoming MS 24 Hour Mega Swims Carol has since become a gold medalist at the 2012 or to talk to us about running an MS 24 Hour Mega event London Paralympics and was made a Member of the at your local pool, visit www.msmegaswim.com, email Order of Australia. In recent years, the program has [email protected] or call 1300 705 341.

10 intouch spring/summer 2014 www.ms.org.au www.ms.org.au spring/summer 2014 intouch 11 Go for Gold › 2014 MS Go for Gold Scholarships winners

SINCE this program began, more than 600 scholarships have been awarded to people living with multiple sclerosis who reside in the ACT, NSW or Victoria. Nicole (Nicky) Alsemgeest, of Wagga Wagga NSW, was one of this year’s lucky winners. Nicky plans to use her 2014 MS Go for Gold Scholarship to further her education by undertaking a Graduate Certificate in Social Media and Public Engagement at the University of Canberra. Nicky was presented with her scholarship at a ceremony held at Dooleys Lidcombe Catholic Club, attended by about 25 recipients, their guests and mega swim participants. Other ceremonies were held in Melbourne and Canberra. We wish to thank all the sponsors who helped make the ceremonies memorable, including Dooley’s who are long-time supporters of the MS organisation. We would also like to congratulate the recipients.

THE ARTS TRAVEL (continued) Suzie Palmer, NSW John Nemer, NSW

Ivo Tanevski, ACT Donna Burrett, NSW Rob de Ridder, Chair of Lana Woollard, ACT Yasmine Gray, ACT the MS Advisory Council NSW, congratulates Helen Woodbridge, ACT Karen Wilkinson, ACT Nicky Alsemgeest. Suzanne Hutchings, ACT Cesar Leon, ACT Jen Severn, ACT Jacqueline Beattie, ACT Jennifer Robinson, Vic Elizabeth Stenhouse, ACT Lynette Hawkes, Vic Anonymous, ACT Anonymous, Vic LIFESTYLE Susan Farey, Vic Julie Beashel, NSW Sophie, Vic Cathy Roberts, NSW David Ralph, Vic Lauren Wilson, NSW Tony Jordan, Vic Savanna Robinson, NSW Vincent Leccese, Vic Anonymous, NSW Frank, Vic Beverley Hergenhan, ACT Tracey Naughton, Vic Trevor Oddy, ACT Robert, Vic Kerrie McDonald, ACT Beverley Bray, ACT EMPLOYMENT Kim Young, Vic Anke Szillat, NSW Ortenzia Biancofiore, Vic John Van de Putte, NSW Rosemarie Paton, Vic Anonymous, NSW Kevin Stafford, Vic Katrina Cragg, Vic Sharon Bradley, Vic EDUCATION Donna Worley, NSW SPORT Lesley Zandstra, NSW Gregory Pugh, NSW Mary Lafferty, NSW Greg Browne, ACT Nicole Alsemgeest, NSW Erin Rogers, Vic Mary-Anne Jones, Vic Chris Tucker, Vic Maria Bradford, Vic Claire, Vic MUSIC Jennie, Vic Karen Ford, NSW Rhianydd, Vic Anonymous, Vic

TRAVEL GYM MEMBERSHIP Anonymous, NSW Gail Chapman, NSW

10 intouch spring/summer 2014 www.ms.org.au www.ms.org.au spring/summer 2014 intouch 11 2014 0602 MS Aust Intouch 88 x 250 June14 Issue OL.pdf 1 3/06/2014 12:01:42 PM NDIS UPDATE › One year on We’ve been working hard during the past year to figure out the impact the National Disability Insurance Scheme will have on people living with multiple sclerosis. In 2012, the MS organisation identified the need to initiate a National Disability Insurance Scheme (NDIS) project so it could learn about the way the scheme would impact the lives of people affected by multiple sclerosis. The aim of our NDIS project was also to continue to position the needs of people with multiple sclerosis. As a result, we have gained the following insights based on the feedback and experience of people with multiple sclerosis in Barwon and Hunter: > People with multiple sclerosis are receiving greater access to funded supports under the NDIS. Participants have expressed an overall level of satisfaction with their planning conversation and their supports. > The full rollout of the scheme will be of benefit to people affected by multiple sclerosis compared to the current system which is not tailored to individual needs, choice or control. > It is estimated that at one point in time 30 per cent of C the people living with multiple of sclerosis will access M NDIS-funded supports, while 50 to 60 per cent will Y access funded supports from mainstream services

CM such as health and community health.

MY Facts from trial sites CY During the recent financial year, we gathered facts in relation to CMY people living with multiple sclerosis in the Hunter and Barwon K NDIS trial sites. As a result, we learnt the following: > More than 400 people participated in 20 conversation forums hosted by our organisation held across the ACT, NSW and Victoria to increase awareness of the scheme. > More than half of the forums were outside of the trial sites and attended by people eager to understand the opportunity the scheme offers for when the scheme begins full roll out commencing in 2016. > There are 554 people under 65 years of age who live with multiple sclerosis in the Barwon and Hunter trial sites and they are registered with the MS organisation. > Of the 554, 115 people with multiple sclerosis became participants of the scheme in Barwon and Hunter (Newcastle only) in the first 12 months. > We assisted 76 people to begin the access process and/or prepare for their planning conversation. > Some 40 participants chose the MS organisation to provide NDIS-funded supports, including assessments by a physiotherapist and occupational therapist, coordination of supports and group-based community activities on how the National Disability Insurance Scheme (NDIS) will affect people with multiple sclerosis.

For more information Visit the NDIS section at ms.org.au, email [email protected] or call MS Connect on 1800 042 138.

12 intouch spring/summer 2014 www.ms.org.au www.ms.org.au spring/summer 2014 intouch 13 › Join in the fun The MS 24 Hour Mega Swim, Squash and Racquetball program is back for 2015, so take a look at the events and be sure to get involved. It’s a lot of fun! Registrations are open for events across Victoria, NSW and the ACT. People of all ages and abilities are welcome to register and come and join us. Make it one of your goals for 2015 and with your help we’ll raise money for people who are living with multiple sclerosis. Our aim is to raise $1.2 million which will go to support the MS Go for Gold Scholarship program and various services to benefit people facing the challenge of multiple sclerosis. Take a look at page 10 of this issue of Intouch to see how the wonderful work of people who support the MS 24 Hour Mega Swim, Squash and Racquetball events helps people with multiple sclerosis achieve their dreams. Melbourne woman Marilyn Simmons is one of our regular swimmers at the Fitzroy Mega Swim. Diagnosed in 1962, To join Marilyn and the other generous supporters Marilyn keeps turning up and swimming and raising money of people living with multiple sclerosis, register at year after year. msmegaswim.org.au. Or consider sponsoring a team.

CHARITY CHRISTMAS CARDS

For enquiries phone 1800 287 367

12 intouch spring/summer 2014 www.ms.org.au www.ms.org.au spring/summer 2014 intouch 13 MS EVENTS

› Registration is essential, because programs Information sessions will run only if minimum numbers are achieved.

VICTORIA NSW Sleep Well Working with MS For bookings or more For bookings or more Discuss sleep strategies Explore your rights at work, information, email information, email > Webinar Wednesday 19 as well as superannuation. [email protected] [email protected] November 7pm – 8.30pm > Webinar Thursday or call 1800 042 138. or call 1800 042 138. > Webinar Tuesday 19 February 7pm 10 February 7pm Sleep Well Sleep Well New on the website Explore the reasons that Discuss sleep strategies Research Update Recordings of some of people with multiple sclerosis > December, Western Dr Kenneth Pakenham talks our education programs have difficulty sleeping, and Sydney, details TBA about how hope helps you including these, are available discuss some strategies for adjust to multiple sclerosis. via www.ms.org.au/ improving your sleep. NDIS Readiness > Webinar Monday 24 educationprograms.asp > Tuesday 11 November Explore your options November 4pm – 5.30pm 12.30pm, St Kilda > Wednesday 19 November, Learn About MS North Ryde RSL. RSVP Conversation Watch medical overviews Medication Update [email protected] with Centrelink with Dr Elizabeth McDonald Discuss the new medications Join one of Centrelink’s and Dr Anneke Van Der Walt. with an MS Nurse. PossABLE Ideas Expo officers to discuss pensions. > Tuesday 18 November Visit our MS and Australian > Webinar Thursday Bladder and 10.30am, Shepparton Home Care Services stall for 27 November 11.30am Bowel Changes ideas to make life easier. > Webinar Monday An MS nurses outlines these Conversation > 14–15 November, 9 February 7pm and what you can do. with Centrelink Maitland Show Ground Join one of Centrelink’s Bladder and EXERCISE GROUPS officers to discuss pensions Bowel Changes Please note that some of and entitlements. Learn about causes and these won’t be held during > Wednesday 12 November treatment options. the school holidays. 10.30am, Footscray > Webinar Thursday 4 December 10.30am NSW Eat Well > Webinar Tuesday MS Exercise Classes Join a discussion with 17 February 7pm Mondays Call Tracy Martinuz a dietician about eating All regions on (02) 9646 0692. well when living with a Medication Update > 10.30am East Gosford: chronic illness. TELECONFERENCES An MS nurse will discuss gentle exercise for > Wednesday 12 November and WEBINARS new medications. balance, strength 1.30pm, Blackburn Call 1800 042 138 to register. > Webinar Tuesday and flexibility 3 February 10am > 12.30pm Tuggerah: Mood and Emotions Managing Fatigue gentle exercise for Dr Catherine Condon talks Strategies to manage fatigue balance, strength about the reason for mood > Webinar Friday and flexibility and emotional changes in 7 November 10am Fridays, call Tracy Martinuz multiple sclerosis, as well as > Webinar Tuesday on (02) 9646 0692 various treatment options. 24 February 7pm > 10am Chatswood: > Wednesday 19 November gentle exercise for 10.30am, Blackburn Exploring Respite Mood & Emotions – ACT balance, strength How you can access it Clinical Psychologist Birgit and flexibility > Teleconference O’Sheedy will explain > 11am Chatswood: Monday 10 November ACT (Acceptance and upper-limb exercise; 2pm – 3.30pm Commitment Therapy). suitable for people who > Webinar Wednesday use a wheelchair Mood and Emotions 4 February 7pm Psychologist, Sally Shaw Iyengar Yoga for MS explains how you can take Improving balance For cost, call Tracy Martinuz charge of your life. A physiotherapist gives advice. on (02) 9646 0692 > Webinar Wednesday 12 > Teleconference Thursday > Tuesdays November 7pm – 8.30pm 5 February 7pm 10.30am Marrickville

14 intouch spring/summer 2014 www.ms.org.au www.ms.org.au spring/summer 2014 intouch 15 > Wednesdays 24 November, Gloria 10am Studdy MS McKerrow House Centre, Lidcombe Student yoga teacher, 11am Studdy MS Roslyn Emmerick, offers Centre, Lidcombe classes accessible to South Eastern Sydney Local Health District people of all abilities. MS Stretch and Strength Phone Roslyn on Multiple Sclerosis Clinic > Monday to Friday 0420 290 076. (individual programs) The gym at the Studdy Exercise in Canberra MS Centre, Lidcombe The University of Canberra Call Tracy Martinuz on Student-Led Neurological (02) 9646 0692. and Falls Physiotherapy Clinic offers exercise classes ACT for people with neurological Yoga in Canberra conditions. Open to NSW > Wednesdays and ACT residents. 5.45pm – 7.15pm University of Canberra During school term Campus Health Hub, Cost: $17 per session Bruce, ACT. In helping to address the healthcare needs of people Call Ruth on > Cost: Individual with Multiple Sclerosis (MS) living in South Eastern 0401 288 921. assessment $30 ($20 for Sydney and Illawarra Local Health Districts, the SESLHD concessions and pension) has opened a MS Clinic at Prince of Wales Hospital (POWH). Massage Therapy and $5 per class in Canberra Call (02) 6201 5843 or email The MS Clinic is dedicated to the diagnosis and long-term Phone the therapist directly [email protected] care of patients with MS and related disorders, and utilises for appointments on the the extensive multidisciplinary services available at POWH. following days: VICTORIA The MS Clinic is run under the direction of A/Prof Arun Krishnan, > Tuesdays and Yoga in Blackburn Consultant Neurologist, Prince of Wales Hospital who has Wednesdays > Mondays 10am a special interest in Multiple Sclerosis and is currently Phone Glenda on Fridays 9.45am involved in related research. 0407 918 500. and 11.15am > Thursdays and Fridays Cost: $10 per class Phone Isi on Call (03) 9845 2700. Contact details: 0431 100 265. Institute of Neurological Sciences Tai Chi in Blackburn Prince of Wales Hospital Canberra Daytime Yoga > Mondays 12.30pm Level 2 High Street Entrance > Mondays Cost: $10 per class Randwick NSW 2031 10.30am – 12pm Phone Jane on 20 October to 0416 279 811. Fax all referrals to A/Prof Arun Krishnan: (02) 9382 2428

For appointments phone: (02) 9382 2414 Webinars are easy If you want to learn about how to manage various aspects All patients are bulk billed. of multiple sclerosis but want to do it from the comfort of your home, our webinars are perfect for you. Low waiting times. A webinar is like a live event – connecting you at your Email: [email protected] computer with our MS expert sitting at a computer in one of our offices in Melbourne or Sydney. https://www.sesiahs.health.nsw.gov.au/MS/ If you have any questions or want the process explained to you, phone Andrea Salmon, one of our MS Once a booking is made, Education Co-ordinators, on (03) 9845 2765 or email patients will be sent a letter with appointment details. [email protected] To register for webinars, call MS Connect on 1800 042 138 or email [email protected]

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