The Official Magazine of MS Australia – ACT/NSW/VIC www.msaustralia.org.au/actnswvic
ISSN 1833-8941 Print Post Approved: Summer 2012 PP 255003/08108
Overcome Carol depression Spotlight on Cooke the NDIS How this Paralympian Gifts you can won gold in London give yourself
EMERGING 2012 GO FOR GOLD: TREATMENTS See page 36 New oral medications for inspiring stories www.facebook.com/MSAustralia http://twitter.com/MS_Australia www.youtube.com/MSSocietyAustralia
Editor: Toni Eatts Publisher: Multiple Sclerosis Limited 38 ABN: 66 004 942 287 Website: www.msaustralia.org.au/actnswvic Frequency: Published quarterly in March, June, September, December Advertising enquiries: Tel: (02) 9646 0725, Fax: (02) 9643 1486, Email: [email protected] Design: Byssus, (02) 9482 5116, www.byssus.com.au Photographs: The stock images appearing in Intouch are sourced from Thinkstock.com 19 Cover: Ben Vella, Shoot Everything Photography Printing: Webstar Print
MS Australia – ACT/NSW/VIC ACT Gloria McKerrow House 117 Denison Street Deakin ACT 2600 Tel: (02) 6234 7000 Fax: (02) 6234 7099 NSW Studdy MS Centre 80 Betty Cuthbert Dr Lidcombe NSW 2141 Tel: (02) 9646 0600 Fax: (02) 9643 1486 Victoria The Nerve Centre 54 Railway Road Blackburn VIC 3130 Tel: (03) 9845 2700 Fax: (03) 9845 2777
MS ConnectTM (information and services): 1800 042 138 (free call) Regional offices: Visit www.msaustralia.org.au/actnswvic and click on ‘Contact Us’ Privacy Policy: Visit www.msaustralia.org.au/ actnswvic for our full policy document ISSN: 1833-8941 14
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 12 for legal or medical advice. Multiple Sclerosis Limited is not recommending medical or legal advice and readers must seek their own medical 9 or legal advice as may be appropriate. Advertising disclaimer: Advertisements are provided to assist consumers to locate and purchase suitable products and services. Multiple Sclerosis Limited does not endorse any one product or service over another, nor do we receive any commission on sale of items. Consumers are encouraged to discuss the options for exchange or return at time of purchase with a particular supplier as Multiple Sclerosis Limited is not liable in the event the product is not satisfactory. MS Australia – ACT/NSW/VIC is a not-for- profit organisation that has been supporting and helping people with multiple sclerosis (MS) since 1956. Through an extensive network of centres, branches, support groups and health services, the organisation provides specialist programs to people with MS, their families, carers, friends and healthcare professionals.
© Multiple Sclerosis Limited 2012
2 intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch 3 Contents CEO’s message
FEATURES Welcome to the Summer 2012 issue of 12 My story: reclaiming the dream Intouch – and what a busy year it’s been. Carol Cooke outlines her journey to From a government-policy viewpoint, winning a Paralympic gold medal. it’s been dominated by the planned National Disability Insurance Scheme 14 Recognise depression (NDIS), and we have been working It’s essential to be aware of the hard to ensure that people with MS have symptoms because depression a loud and clear voice in how the scheme is common for people with MS. is shaped and implemented. 28 ‘Emerging treatments’ series: We are talking to the key decision makers in Canberra and Oral medications making the necessary changes to the structure of our services In the second part of our series, we so they meet the needs of people with MS and their carers, examine this new range of drugs. families and friends. On page 33, Daniel Kyriacou, National Corporate Communications Manager with the NDIS, answers questions about MS COMMUNITY some of the issues that might be of concern to you. You will also 19 MS Ambassador profile: see reports about NDIS-related activities our staff are involved in. Meet Jessica Grey. Although the NDIS has been top of mind, we have also been 23 Community fundraising: busy raising vital funds for maintaining our services and supporting Thank you for your hard work. research. I want to thank all the people who took part in recent events such as the MS Sydney to the Gong Bike Ride. At the time 24 Volunteers in action: of writing, more than $3 million had been raised from it, and none Meet people who are helping of that would have been possible if it weren’t for the hundreds of to make a difference. volunteers who gave up their Sunday to help stage this iconic event. As the year ends, I want to thank all the selfless volunteers who 26 Peer support: have made such a significant contribution over the past 12 months. Sharing the MS journey Whether you’re helping out at a fundraising event, working in one 27 Support group profile: of our MS Community Shops, wrapping gifts at a Centro shopping The Taking Control Peer centre or spending a couple of hours reading to one of our residents, Support Group, Canberra we depend on you, and our clients depend on you. The 24 Hour Mega Swim is a wonderful example of having the community come together to assist people who have MS. On HEALTH & WELLNESS page 36, you can read about how some of this money is put to such 32 Take charge of your health: great use to help dreams become reality. Tips to help you to stay You might be aware that the 24 Hour Mega Swim was created by cool this summer Carol Cooke. Take a look at her inspiring story on page 12 and join 33 Spotlight on: The National me in congratulating Carol for her incredible gold-medal win at Disability Insurance Scheme the London Paralympics. To all our staff members, my sincere thanks for your dedication in 2012. During my first eight months at the organisation, I have really LIFESTYLE had my eyes opened to the amazing work you do. 36 36 Congratulations to our winners Finally, I wish you and your family a joyous Christmas and a We celebrate with the 2012 happy and healthy New Year. Go for Gold Scholarship winners.
38 Gifts for you: Our health professionals suggest ways to boost your health and happiness. Jim Carroll REGULARS CEO, MS Australia – ACT/NSW/VIC 5 Your say 6 News Look out for this symbol 9 MS insights 10 MS Readathon for information and articles 11 Q&A specifically relevant to family 20 Events members and carers of 22 Family and carers CARERS people with MS. 39 New resources
2 intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch 3 Editor’s note Wow! Can you believe how quickly this year has gone? It seems only a few months ago I was writing the editor’s note for the Summer 2011 issue of Intouch. Now, the delightful Rebecca Kenyon is looking forward to sharing Christmas with her new baby girl, and I’ve returned to keep the editor’s chair warm during her maternity leave. Although this time of year brings joy to a lot of people, feelings of loneliness and depression can be stirred up in others. That’s why we have explored the causes of depression in this issue, on page 14. Being clinically depressed is more than feeling down for a few days. If your feelings of depression last for two or more weeks, you could need help from health professionals, especially because people with MS are more prone to depression compared with the general population. We hope you will take the time to read this important feature article and contact your GP if you think you are depressed. On page 28, you will notice we have continued our series about emerging treatments. In this issue, we look at oral medications, and you might be pleased to know that a couple of new drugs are on the horizon. We couldn’t head into the festive season without thinking about gifts, and on page 38, you will see a list of gifts with a difference: gifts you can give yourself; in fact, if you incorporate some of these ideas in your life, you will continue to be rewarded long after the festive season has finished. On behalf of the Intouch team, I wish you a merry Christmas and a happy new year.
Toni Eatts Editor
Rebecca Kenyon and her husband Michael and son Aiden welcomed Charlotte Jade into the world on 31 October.
Follow us online
www.facebook.com/MSAustralia http://twitter.com/MS_Australia www.youtube.com/MSSocietyAustralia
Win a BMW 320i or a unique 20-night vacation
Win first prize in our latest Art Union and you can choose between driving away in a new BMW 320i, valued at $65,000, or flying business class and taking a 20-night cruise that includes beautiful Alaska and the magnificent Canadian Rockies!
Join Club MS and enter our exclusive draw to win 2oz of GOLD BULLION
The odds of winning are fantastic, and ticket prices start at only $15. Buy your tickets and help MS Australia – ACT/NSW/VIC provide vital support and services to people living with MS!
The competition is drawn on 14 December. Giving Life Back
For more information and to purchase tickets, visit www.msraffles.org.au or FreecallTM 1800 287 367
4 intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch PB Thank you for sharing your stories, tips and feedback. Your say We’d love to hear more!
Write to us at [email protected] or post your letter to ‘Intouch’, PO Box 210, Lidcombe NSW 1825
‘Disabled friendly’ Dancing through life We all know how difficult it is to find suitable motel or holiday I was diagnosed with Relapsing–remitting MS about accommodation. So often, it turns out to be inadequate. 30 years ago when I was in my early thirties. Unfortunately Then we arrived at Wingham, 10 minutes west of Taree, my marriage ended. To obtain a social life, I took up ballroom NSW. The local Tourist Bureau had directed us to the Golf dancing. I found it a gentle way to strengthen my muscles. Club Motor Inn, which has a specialist ‘disabled unit’. My dance teacher encouraged me to study, and I What a surprise! The unit was in quiet, leafy surrounds, eventually became a fully accredited dance teacher. I with parking at the door and wide ramps. It also had a full wet now teach for several government organisations that run room, wide doorways and a comfortable bed. social dances for older people. I also do a weekly disco for Not only did it offer easy access and glorious space, but teenagers who live with a cognitive disability who absolutely when we opened the curtains of the picture windows, wow! love it. Teaching people, especially the socially isolated, gives The view was amazing: huge ponds with birds, fish and a me a wonderful feeling of camaraderie and achievement. rustic fountain, as well as trees edging the golf course leading Katherine, Vic to the foothills of the Great Divide. There was even easy access to the outside deck. So relaxing! If only every other unit in Australia that’s advertised as ‘disabled friendly’ was like this. Write in to WIN! Margo Hoskins, NSW Keep your feedback and stories Types of MS coming in! Next issue’s theme will I was diagnosed by MRI scan in early 1998 and have progressively gone downhill from then. I’ve been in a focus on ‘country living and MS’. wheelchair for the past two and a half years. My first neurologist said I had Relapsing–remitting MS (RRMS), but I was only treated with a medication, which appeared to do nothing. My second neurologist still said I had RRMS, and my insistence that I had never experienced the joy of a remission didn’t bring forth any change of diagnosis. When I was put on another drug which caused side effects, he said there was nothing else he could do, and all treatment apart from the original medication was ceased. Then I read your article on the types of MS in the Spring 2012 edition of Intouch. I was ‘chuffed to bits’ to know Each reader to have their letter published will win an that the type of MS I have is more than likely known as Progressive–relapsing MS, because it fits the definition given. organic tea and chocolate Thank you! indulgence pack. David, NSW
A At only $1,990 the NEW Monarch Literider is the smartest, most affordable compact powerchair on the market. Ideal for indoor use, this highly manoeuvrable, battery powered chair is tough enough for moderate slopes outdoors and capable SMART of carrying a maximum load of 125 kg! Designed to be transported in the boot of a car the Literider is easily dismantled MOVE and just as easily reassembled when you reach your destination.
Visit a Scooters Australia showroom in Sydney, Melbourne, Brisbane, Adelaide, Perth, Canberra and Regional Cities or call 1300 622 633 to arrange a FREE home test drive from your local dealer.
Easily dismantles to fit in your car boot. PB intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summerwww.scootersaus.com.au 2012 intouch 5 SCO0059_INT_v2 NEWS
For the newly diagnosed MS Australia – ACT/NSW/ VIC has launched a new booklet entitled Understanding MS for people who are newly diagnosed with MS or are ready to find out more about their condition. The booklet Gong cyclists raise funds contains easy-to-understand The 31st annual MS Sydney to the Gong Bike Ride was held on 4 November, information about MS, a and 10,000 cyclists took part to raise funds for MS Australia – ACT/NSW/VIC. discussion of the symptoms At the time that Intouch went to print, more than $3 million had been raised. As and the medical treatments the fundraising environment becomes increasingly competitive, donations have that are available, MS-related been slower than last year, but riders and the MS events team will work hard to information about matters such bring the total up to $4 million by the time donations close early next year. as the feelings and emotions After last year’s successful ‘Battle of the Banks’, industry leagues were that people with MS might introduced to enable workplace teams to compete to raise the most money. encounter, and information Fundraising battles were fought between teams in the banking, mining, IT and about the health-professional construction industries. Many employers matched funding as companies strived and other support networks to get their names on to our fundraiser-leader boards. that are available. To obtain Participants took either a 90km route from Sydney Park in St Peters or a 58km a copy, call MS Connect on route starting at Engadine. Many were riding in support of a friend or relative who 1800 042 138. n has MS, and at least 25 riders had been diagnosed with MS. After some early drizzle that cooled the air, the sun peeked through the clouds and a brisk tailwind Understanding MS spurred riders onwards to Wollongong. An Introduction for People Living with MS At the time of going to print, the highest fundraising team was SBS BA Cycle Safari, a team made up of staff from the broadcaster SBS and its partner Broadcast Australia. The 163 team members brought in more than $151,000. The Downer Soft Cogs came a close second in raising more than $149,000. In individual fundraising, Stephen Renkert, Geoffrey Hilton, Graeme Barclay and Errol Neish all raised amounts well in excess of $20,000. Jim Carroll, CEO, MS Australia – ACT/NSW/VIC rode for the first time and www.msaustralia.org.au
TM Freecall reached his fundraising target of $10,000. “What a fantastic day,” Jim says. 1800 042 138 “Beautiful weather, spectacular scenery and wonderful camaraderie among the © MS Australia 2012 riders from start to finish. The ride was brilliantly organised, and I couldn’t be prouder of the MS events team and the 350 volunteers. I also want to thank The Sydney Morning Herald, the NSW Police, the Ambulance Service of NSW, the St TM 1800 042 138 www.msaustralia.org.au Freecall John Ambulance volunteers, the NSW Volunteer Rescue Association, and NSW Roads and Maritime Services who worked hard to make the day a success.” n
Have your gifts wrapped Once again, Centro shopping centres have partnered with Changes at MS Australia us to provide a Christmas gift-wrapping service, and all The role of our national body MS Australia has been proceeds will go towards supporting people living with greatly enhanced. Recruitment of a Chief Executive MS. In the lead-up to Christmas, customers will make a Officer is underway, and a National Communications donation of their choice to have their purchases wrapped Manager was appointed in September. The by an MS volunteer. organisation has been boosted to ensure there is a You can support this important fundraising event by strong national voice in relation to issues that affect choosing to do your Christmas shopping at one of the Centro people with MS who live throughout the country centres in NSW or Victoria. Please encourage your friends, and to drive important issues such as the National family members and colleagues to do the same. To find your Disability Insurance Scheme. nearest Centro venue, visit www.msgiftwrapping.org.au/
6 intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch 7 News from MSAC
Nola Reese with Robert Allen.
By Andrew White, Chair, MS Advisory Council As summer arrives, I have mixed emotions. Although I revel in the opportunity to travel to and from work during daylight, I also worry about the havoc the heat can wreak on my MS. Daily experiences cause me to reflect on my emotional reactions to MS. I’m pleased to report that most often my circumstances have attracted positive, helpful and supportive people in relation to both attitudes and actions. Despite my own feelings on any given day, my MS Art Exhibition success emotions are usually lifted and I’m able to tackle not Nola Reese won this year’s Barry Allen Art Prize only the normal daily activities but the challenges when the 2012 MS Art Exhibition was opened at associated with my MS. the Nerve Centre, Blackburn by Jim Carroll, CEO, For many people who are affected by MS, the MS Australia – ACT/NSW/VIC. support of the team from MS Australia – ACT/NSW/ The exhibition ran from 17 to 21 October, and more VIC is crucial for fostering positive emotions. As than 300 visitors viewed the 249 artworks exhibited by we near the end of 2012, please join MSAC to add the 75 artists who attend our Confident Living Program. support to the people in our community who need it most, by providing feedback to the MSL Board and Almost 150 people attended the gala opening and saw Leadership team. Nola received the prize from Robert Allen, the nephew of By making sure you register on our website Barry Allen. Art-prize judge Rebecca Lovitt, the curator www.msac.org.au and visit us on Facebook, you can for Southern Health Art Gallery, said Nola’s painting had be directly involved in helping to improve how the “creative content, focus and vision”. Rebecca also gave organisation supports our community. an honourable mention to Michael West, John Abela, At present, we are consulting with registered people Andrew Pearson, Catherine Boyle and Ehsan El Helou. n about their employment experiences and working towards having a discussion about carers and their needs. In being involved, you will help us greatly by giving the Board and the Leadership team a more complete picture of the MS community’s needs. I’m also pleased to report that the first meeting of an MSAC chapter in NSW was held on 7 November. The meeting was chaired by Mike Hemingway and attended by five people with MS. The group is looking for another five people to join, including a carer. If you are interested please email the address below. Also look out for an update in the Autumn issue of Intouch. A DisabilitTea in the ACT.
Tea and NDIS talk DisabiliTEAs, aimed at raising awareness of the National Disability Insurance Scheme (NDIS), were held in the ACT, NSW and Victoria. People gathered and shared a ‘cuppa’ at our regional offices. DisabiliTEAS were also held at the Regent Confident Living Program; Email: [email protected] the Footscray and Blackburn offices in Melbourne and at Telephone: (03) 9845 2794 Gloria McKerrow House, in Deakin, ACT. n
6 intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch 7 NEWS ADVOCACY
A world-first trial In a clinical trial that is set to take place in Australia and New Zealand, researchers will test whether vitamin D can lead to prevention of MS in people who are at risk of developing the disease. The PrevANZ study, a world first, was launched in Hobart in October by Ms Julie Collins, Federal Minister for Community Services, the Status of Women, and Indigenous Employment and Economic Development. The focus of the trial will be on the possibility of using vitamin-D supplementation to prevent a diagnosis of MS after a person presents with the first symptoms that could lead to a diagnosis of MS. The researchers will also test appropriate dosage levels and safety, and their findings could eventually lead to an effective MS-prevention strategy. For more information, visit NDIS forums www.msra.org.au/australia-rolls-out- In October in Geelong, Melbourne and Mildura, one of our MS Advocacy world-first-ms-prevention-trial n Coordinators attended the National Disability and Carer Alliance’s engagement forums about the National Disability Insurance Scheme (NDIS). Geelong is to be one of the scheme’s launch sites next year. The aim of the forums has been to seek input about assessment, planning, choice, types of support, the complaints process, review, and innovation. The responses are being reported to the Federal Government as part of the consultative process for developing and implementing the NDIS. The engagement forums are about ensuring that people are given as many opportunities as possible to have their say about how the scheme should work ‘on the ground’ so it can best meet the needs of people with disability and their families. For people who are interested in commenting, there is also a survey running on the Alliance’s web page in order to seek input from people with disability, family members and carers as well as representatives of service organisations. Go to http://disabilitycareralliance.org.au/survey/ n
Michael wins an award Congratulations to Dr Michael Summers, former Senior Policy Advisor with MS Australia − ACT/NSW/VIC, for receiving an award from the Australian Rehabilitation and Assistive Technology Association (ARATA). The award was given for ‘developments, improvements and innovations in the assisted technology service industry’. It was awarded to Michael in recognition of the valuable work he undertook while with the MS organisation when he brought stakeholders together to develop the National Aids and Equipment Reform Alliance (NAERA). Michael now holds the position of Senior Policy Advisor at Assistive
Technology Suppliers Australasia. n thinkstock/Jupiterimages/Getty Images
8 intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch PB The latest revelations in MS insights global MS research.
New website contains summaries Updates from Making Sense of MS Research, a new health-information website for people ECTRIMS with MS and their families, is up and running. It was created by researchers from Melbourne’s La Trobe University and contains summaries of independent, MS Australia and MS Research high-quality research into MS-treatment options as undertaken by the Cochrane Australia used the internet Collaboration. It was developed in partnership with MS Australia and people with to provide real-time research MS and their family members, as part of the IN-DEEP project. updates from the European At present, the site contains six summaries about drug and non-drug Committee for Treatment and MS treatments, and the number of summaries will hopefully grow over Research in Multiple Sclerosis the coming months. (ECTRIMS) conference held People who visit the website are encouraged to leave feedback so the in France between 10 and site can be improved. There is also a poll you can take about new 13 October. MS treatments you would like included on the website. The address is The conference was held www.makingsenseofmsresearch.org.au/ n in Lyon and was attended by more than 7,000 scientists and clinicians – to date the largest Research into the international gathering devoted immune system to MS research. The research updates were According to results published by provided in partnership with the University of Adelaide researcher Dr Iain US National MS Society and the Comerford, a new method has possibly Multiple Sclerosis Society been found for controlling the immune of Canada. system of people with MS. The online coverage included The aim of the research is to blogs from science and medical understand how the immune-system writers throughout the day and cells are regulated and how they a Daily MS Research Minute interact with each other. video based on interviews with Along with his colleagues, MS researchers. Blog topics including Professor Shaun McColl, included ‘Relapses and disability in MS’, ‘MS risk factors – sun Dr Comerford focused on a molecule Dr Iain Comerford. exposure and infections’, ‘Social known as PI3Kgamma(ɣ), which is involved in activation and movement cognition – in relationship to other of white blood cells. In work previously cells, and a dramatic reduction in neuropsychosocial factors and undertaken by other researchers, a role movement of immune cells into the depression’, ‘Vitamin D – the BENEFIT trial’ and ‘Progression – was potentially shown for the molecule central nervous system. “It will now Do all patients with MS ultimately in treating disorders such as diabetes be crucial to determine whether develop progressive MS?’. and rheumatoid arthritis, and the targeting these molecules could be a The Daily MS Research researchers were keen to investigate its safe and effective way to treat MS in Minute videos remain available potential for MS treatment. humans,” Dr Comerford said. on the MSRA YouTube channel, In a study in which animals were Support for the research came www.youtube.com/user/ used, Dr Comerford and his colleagues from a three-year fellowship awarded MSresearchers showed that the effects of blocking to Dr Comerford by MS Research You can access the blogs PI3Kɣ involve a reduction in activation Australia. For more information, via the National MS Society’s of self-reactive immune cells, a visit www.msra.org.au/adelaide- blog page by googling blog. reduction in release of inflammation- researcher-discovers-possible-new- nationalmssociety.org n inducing molecules from immune way-control-inflammation-msn
Did you know? According to a recent study of people with MS from five of life. People who had mobility problems also required European countries, 43 percent of the people involved greater support from carers and health professionals. considered walking impairments to be their most The study involved 340 neurologists and the records bothersome symptom. of 3,572 patients, of whom more than 2,000 completed a The report is entitled Social and economic burden of questionnaire. Another conclusion was that patients and walking and mobility problems in multiple sclerosis, and one society as a whole could derive significant benefits from of its conclusions was that walking problems represent a interventions for improving mobility. For a full report, go to PB intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvicconsiderable burden both financially and in relation to quality www.ncbi.nlm.nih.gov/pubmed/22989365summer 2012 n intouch 9 Leaving a lasting tribute Consider leaving a gift in your will or an ‘in memoriam’ gift in the name of someone you love. Did you know you can go online to make a donation in memory of a loved one? Leaving a gift in your will or an ‘in memoriam’ gift is a very special way to provide an ongoing legacy to help people with MS, and now it couldn’t be easier. Simply visit www.mssociety.org.au, click on the ‘Donate’ button, complete your donation details, and select ‘In Memory’ under Pages close on MS Readathon ‘Donation Information’. “There is more treasure in books than in all the pirate’s You will then be asked to provide details of loot on Treasure Island.” So said Walt Disney many moons the person you are remembering. ago, and almost 5,000 babies, students and adults couldn’t agree more. Throughout August, these very Any gift, however large or small, is much special individuals all took part in the 33rd MS Readathon appreciated, and it is comforting to know program, raising funds to help make a difference in other that your generosity makes a difference to people’s lives. people living with MS. This year, more than 300 schools took part, and nearly Contact us half logged on in July to be a part of our inaugural live To order some ‘in memoriam’ envelopes or a webcast and launch. copy of our free bequests booklet Your Future As preparation for the 1st of August ‘start reading’ date, in Your Hands, please contact your Planned thousands of fundraising pages were created, books were Giving Officers Donna Bradley in Victoria selected, emails to friends and family were sent, and once or Jacqui Sumner in the ACT and NSW on the starter gun sounded, equally as many cries of “Just five FreecallTM 1800 443 867. Alternatively, email minutes more!” could be heard far and wide. [email protected] Yet again there have been dozens of heart-warming stories, such as the story of Linda Caswell, who was diagnosed with MS almost 10 years ago. Not only did Linda encourage her friends and family to support her reading efforts; she held an eight-hour reading marathon in the local Coles, Strathpine supermarket. Supported by her husband David, Linda (pictured above) raised an incredible $3,528. Then there was Jacob, who was on a quest to improve his writing in 2012. To help him do that, his deputy headmaster encouraged him to increase his reading, so Jacob registered for his first MS Readathon. Supported by his parents, Jacob raised a staggering $7,365. Sponsorship for this ‘all-time favourite’ fundraiser is still being processed. We can’t wait to share the successes of the 2012 program in the next edition of Intouch. Thank you to everyone who took part and for making a huge difference. For more information, log on to www.msreadathon.org.au . . . and Pssst: keep reading. n
10 intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch PB Your MS-related, health and lifestyle Q&A questions answered.
If you have questions about MS-related concerns, please contact MS ConnectTM on 1800 042 138.
Could you tell me about the Menzies Research Institute Tasmania study in which the researchers found that people on interferon-beta were able to absorb three times more vitamin D from the sun compared with people who weren’t on the drug? – Pearl, NSW
The results were published in the prestigious journal Neurology earlier this interferon-beta. It is derived from a naturally occurring year. A media release from the Institute component of the human immune system and has been contained an outline of how the Menzies found to lead to a reduction in frequency of relapse and researchers used data from the MS other symptoms specific to MS. Longitudinal Study, from 2002–05, which involved 178 Although interferon-beta is a front-line MS treatment, people who had MS and were living in southern Tasmania. how it actually works in MS is unclear, but it is thought to Menzies researchers Dr Niall Stewart and Dr Steve act by affecting the immune system. Simpson, Jr were the co-first authors of the paper. The MS Longitudinal Study was funded by the National Dr Simpson said the findings suggested that part of the Health and Medical Research Council, the Trish MS therapeutic effects of interferon-beta on relapse in MS Research Foundation (via MS Research Australia) and the may be through its effects on vitamin D, since vitamin D University of Tasmania. n has the ability to reduce inflammatory pathways in the immune system. “Not only did we find that persons taking interferon- beta had higher vitamin D levels than those not taking it; we found that this increase in vitamin D was due to an enhancement of the association between sun and vitamin Did you know... D, with persons on interferon-beta having nearly three times as much vitamin D from similar amounts of sun exposure that the Calwell, Curtin, Jerrabomberra as those not taking interferon-beta,” he said. “We have and Wanniassa Community Bank® previously shown that persons with MS with higher vitamin D levels had lower numbers of relapses. In this analysis, Branches give up to however, we found that vitamin D was only associated with 85% of their profits back reduced risk of relapse among those using interferon-beta. to the community? Interestingly, the reciprocal was also true, with interferon- beta only associated with reduced risk of relapse among This support comes in the form of those with higher levels of vitamin D.” donations, grants and sponsorships, Senior author Professor Bruce Taylor said the new helping organisations findings had the potential to markedly affect clinical practice and goes towards in MS treatment, but cautioned that more research was like MS Australia enhance the quality required. “This study adds to the growing body of research of life of people with MS. into MS, but before we can apply these findings to MS- treatment practice, clinical trials must be done to prove these associations. Menzies is planning to undertake such a trial in the future,” he said. “This study does provide further support for persons with MS to periodically have their vitamin D measured, particularly in winter, and if they are deficient, to seek the advice of their physician as to whether supplementation is appropriate for them.” About 60 percent of MS patients who have the
Thinkstock/Hemera Relapsing–remitting type of MS are treated with
PB intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch 11 My story: reclaiming the dream
As a teenager, Carol Cooke dreamt of swimming at the Olympics, but she had to wait 32 years to win Paralympic gold.
Her journey to the London Carol Cooke in Paralympics was so circuitous that winning form. even after she had competed in the Track Riding Individual Time Trials, she didn’t dare believe she had won a medal. “I went straight to cool-down,” Carol recalls. “I was riding the stationary bike, and the public-relations person kept saying I’d won, but I didn’t believe it until the British coach came and said, ‘Wow, awesome race – congratulations on your win!’ I burst into tears. I still didn’t really believe it until they put the medal around my neck.” Carol had finished the time trial in 13 minutes and 50.54 seconds – 20 seconds ahead of her nearest rival. Three days later, she competed in the Individual Road Race, which was contested by both men and women. Although she missed out on a medal, she was the first woman to cross the line. While growing up in Toronto, Canada, Carol aspired to win gold. “I started swimming when I was 10, and was soon competing at national level. My goal was to swim at the 1980 Olympics.” However, international politics intervened, and Canada was one of the countries to boycott the Moscow Olympics in protest against the Soviet war in Afghanistan.
Moving countries Carol shelved her dream but continued to swim competitively, and participated in triathlons. In fact, in 1985 in San Jose, California, she was representing the Toronto police force at some ‘police They married in March 1995, after her balance. He thought she had an and firemen’ games when she met a long-distance courtship, and Carol inner-ear infection. “When it developed some Aussies. “I took a holiday to officially migrated to Melbourne a into double vision, I went to my local Melbourne, and that ignited my love month later. The happy couple settled optometrist. She didn’t say anything affair with Australia. Between 1986 and into their Northcote home, and over to me, but she rang my GP and 1992, I visited Australia nine times.” the following years, Carol climbed the suggested I be referred to a neurologist One of those visits occurred at a corporate ladder at Australia Post and to be tested for MS.” time that Carol was feeling jaded as a stayed fit by swimming competitively in police officer, after 14 years in the job. masters’ competitions. Devastating news “I travelled around Australia for a year, She was 36 when she visited her GP The neurologist ordered an MRI, and and met my husband, Russell, three because she was experiencing vision on 23 April 1998, at 2.15pm, Carol months before I was due to go home.” problems and had some difficulties with was seated in his office waiting for
12 intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch 13 were overlooked during the selection process. Her rowing partner switched to cycling, and Carol followed. In April 2011, she rode her heavy trike in two para-cycling races and impressed the people at Cycling Australia. They organised a coach for her, and in September 2011, in the results. “My vision had returned to understanding specialist. By the time Denmark, she competed in the normal, so I’d gone to the appointment Carol next saw her GP, he had found Para-cycling World Road alone,” she explains. “The neurologist a new neurologist and sent for Championships. “I came second, breezed in, spent about two minutes MS-information packs from what is now but the head coach promised that with me, and said, ‘You have MS. Your MS Australia – ACT/NSW/VIC. “He said if I got fitter and stronger, he’d build life as you know it is over. Go home we both needed to study up on MS. me a 14-kilo carbon-fibre trike.” and put your affairs in order before you He’s still my GP, and I’m still with the Carol dropped 13 kilograms and become incapacitated.’” neurologist he found for me.” improved her times, her coach Carol was so shocked that when made good on his promise, and the she arrived home, she sobbed her Staying strong rest is history. “It was surreal to be in heart out, and by the time Russell Carol developed a coping strategy and London at the Paralympics. I kept returned from work, she’d hatched a made a decision: “No one was going thinking, It’s 32 years since the plan. “I was going to divorce him and to tell me how to live my life.” She disappointment of 1980, and I’m here. return to Canada so I wouldn’t be a continued swimming competitively, I had to pinch myself.” burden on him. I thought I’d be sitting but by early 2002, she says, “I was What about her MS? “I still deal in a wheelchair, wearing nappies and wheelchair bound.” She used Botox to with stupid little problems like chronic drooling.” When Russell heard the relieve spasticity and stepped up her pain, bowel and bladder issues, and news, however, he calmed her by exercise levels. difficulties with balance – but I’ve learnt declaring, “You don’t have MS; we have In 2005, the Paralympic Committee you have to find a different way; for MS, and we’ll work it out.” conducted a talent search and example, I can’t ride on two wheels, so Carol’s GP was also “amazing”. After suggested to Carol that she take up I ride on three. My advice is: Figure out he’d taken the call from the neurologist, competitive rowing, which she did, until what you’d attempt to do if you knew he decided that Carol needed a more 2011, when she and her teammate you wouldn’t fail, and do it.” n
Starting the Mega Swim In 2001, Carol Cooke was approached to raise money for privilege of discussing the creation of a readathon the fledgling Go for Gold scholarships program. “I talked with Lorraine when I went home for a holiday,” Carol my swim club into conducting what I thought would be a explains. “Lorraine said she’d wanted to encourage one-off fundraising event at Fitzroy Pool.” children to read, and she’d thought having a readathon The club raised $22,000 from the event, which was so would do it, so she selected the MS organisation as a popular it resulted in seeding of the highly successful charity, and it took off from there.” 24 Hour Mega Swim program. Today, Mega Swim is run Although Carol doesn’t think she was directly in three States and the ACT, and more than $4 million has influenced by her former librarian, she’s pleased that been raised for the Go for Gold scholarships. the 24 Hour Mega Swim has raised so much money. Coincidentally, Lorraine Dilling, the woman who initiated “That first year, there were me and four or five other the first MS Readathon in Canada, in 1977, had been women, who I’d roped in to help run it, so it’s terrific to a librarian at the school Carol was attending. “I had the see how much it’s grown.”
Would you like to share your story with other people living with MS? Contact the editor on (02) 8484 1316 or email [email protected]
12 intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch 13 FEATURE
Recognise depression Are you feeling down or are you depressed? Depression is common for people who have MS so it’s important to know the difference.
There’s nothing like the summer-holiday festive major depression and many have multiple episodes. In the season to have your chances of feeling sad or lonely general population, depression is associated with suicide, increase – especially because many people who provide and this is also over-represented in people with MS; in fact, support are away during December and January. During 10 percent of deaths among people with MS are by suicide. these months, you are also more likely to be forced This is much higher than in the wider population or among indoors due to the warmer weather, and could feel more people with another chronic condition.” isolated as a result. Dr Fulcher says this is why it is crucial that people with MS When life delivers a challenge or three, it’s normal to feel who have depression be diagnosed and treated. down. However, MS can affect your emotions as well as your body, so depression can occur at any time. It’s therefore Causes of depression essential to be aware of the signs of depression. The causes of depression are not fully understood, but it is “Clinical depression is a medical condition that’s more thought that an imbalance in brain chemistry causes a than a feeling of sadness or a passing phase,” explains drop-off in mood; indeed, anyone can develop depression Dr Gary Fulcher, Senior Clinical Psychologist, MS Australia without there being an apparent cause. – ACT/NSW/VIC. “Clinical depression is a medical condition It’s also easy to understand that some people are more that causes a persistent, low mood that lasts for at least at risk at certain times, for example if you have experienced two weeks and sometimes up to several months. It can a stressful event such as bereavement or relationship also come with other physical and psychological symptoms breakdown. Other people at risk are people who have a that disrupt a person’s ability to function in everyday life or family history of depression, women who have recently given participate in activities they once enjoyed.” birth, people who are socially isolated and people who are Dr Fulcher points out that depression is one of the most addicted to alcohol or another drug. common of all mental-health problems in Australia. “Although Living with a chronic medical condition is another one in five Australians experience depression at some point contributing factor. Certainly, the challenges of living with MS in their lives, about two-thirds of people with MS will have a can be a trigger for depression. When other possible factors
14 intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch 15 FEATURE
such as chronic pain, overwhelming fatigue and the social • Feelings of agitation, anxiety or sluggishness isolation that disabilities can cause are added in, it is easy to • Ongoing fatigue and loss of energy understand why people with MS are vulnerable. • Feelings of worthlessness or guilt In addition, depression might sometimes be due to MS • Difficulty thinking, making decisions and concentrating itself, because lesions in certain parts of the brain can directly at work or at home cause depression or alteration of mood. • Recurrent thoughts of death or suicide Dr Fulcher says, “There seems to be an interactive effect between stress and depression. There also appears to Some symptoms of depression are also symptoms of MS, be a two-way interaction between depression and neuro- such as fatigue and reduced concentration, and it can be inflammation. This means that inflammatory episodes cause difficult to differentiate between the two. depression and that depressive episodes trigger inflammation in the central nervous system.” There is also some evidence that people with MS have an increased risk of depression when they experience a relapse, especially when the relapse results in an increase in symptoms and/or disability. In the case of some medications, such as corticosteroids that can be prescribed for treating a relapse, depression can also be a side effect. It has also been suggested that interferon medications that are used to treat MS can trigger or exacerbate depression in people who are more susceptible. However, researchers have failed to demonstrate a strong link.
Am I depressed? Seek treatment Depression can be difficult to distinguish from other If you think you have depression, it’s important to consult feelings, such as the grief associated with mourning a your general practitioner, who might give you a referral to loss. Clinical depression can be diagnosed if, on a daily see a psychologist, psychiatrist or counsellor who is trained basis, a person has been experiencing at least five of the in providing help for depression and other mood disorders. following symptoms, including one of the first two, for at Dr Fulcher advises, “Research evidence is clear least two weeks: that the most effective treatment for depression is • Feeling extremely sad, ‘down’, irritable or tearful a combination of antidepressant medication and most of the day psychological therapy, particularly cognitive–behaviour • Loss of interest, motivation or pleasure in most therapy. The antidepressants help by making enough activities and people serotonin available for the person with MS to be able to • Changes in appetite, and significant weight gain or loss focus well enough to engage in the psychological therapy. • Unexplained physical aches and pains Once the person is focused, psychological therapy is • Sleep disturbance such as insomnia (inability to sleep) more effective than drug therapy, and over time the
Thinkstock/Jupiterimages/ Getty Images/iStockphoto/ or sleeping too much drug therapy can be reduced.”
14 intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch 15 FEATURE
Self-help Beyond Blue is a national organisation that has the aim of preventing depression. On its website, www.beyondblue.org. au, it has advice about the strategies that people who have depression can use to help themselves, especially on bad days. Here’s an edited extract from its list of suggestions: • Don’t stay in bed Get up and get on with your normal routine. If you are based at home, do some physical activity such as walking to get the newspaper. Avoid napping during the day, because you will upset your ‘body clock’. • Catch up with friends You might not feel like socialising, but it’s important to phone family and friends or organise to meet for a coffee. Isolation causes the risk of depression to increase. • Keep active Plan to do at least one enjoyable activity every day such as going to a movie or reading. Regular
activities are important for maintaining good mental and physical health. • Get enough sleep It’s not the total length of the sleep that matters; it’s the quality of deep sleep and dream sleep. Most deep sleep occurs during the first five hours after the person has fallen asleep. • Exercise regularly Help relieve mental tension by walking, swimming or dancing or doing yoga or a workout at the gym. • Reduce intake of alcohol and other drugs Although these substances can grant temporary relief, they can also cause long-term problems and interfere with other medication. If you think you are experiencing depression, seek help. In the first instance, speak with your GP, who might, for additional support, refer you to a psychologist, psychiatrist or counsellor in your local area. You can also call MS Connect on 1800 042 138. Our trained MS professionals can put you in contact with clinical psychology and counselling services. If you are not experiencing depression but just feeling down or low, consider linking into our peer-support service. Discuss with MS Connect how you can join a support group for face-to- face meetings or meet online via My MS Community. There are two communities, one for people living with MS and one for carers, family members and friends. My MS Community is easy to use: just register at http://mymscommunity.msaustralia.org.au/register Remember that depression is a medical condition and that it is not a sign of weakness to seek professional help; in fact, it’s essential you seek help.
For a list of references for this article, please
contact the editor. Thinkstock/Jupiterimages/ Getty Images/iStockphoto/
16 intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch 17 FEATURE
Being mindful eases depression There is growing evidence that in being ‘mindful’, people with MS are better able to deal with depression and fatigue and improve their quality of life. Mindfulness is the process of consciously bringing awareness to your here-and-now experience with openness, curiosity and flexibility. It’s a process guided by having a gentle and non-judgemental frame of mind. You have most likely heard the saying ‘Take things one step at a time.’ When you practise mindfulness, you go even further, by looking at things ‘from moment to moment’. Nowadays, most of us are driven by either analysing what has happened in the past or rehearsing what might happen in the future. We rarely live in the present moment, without wearing our ‘judgement glasses’. Increasingly, we are learning that when we have the ability to be ‘mindful’, we undermine destructive emotive, cognitive and behavioural processes. According to multiple scientific studies, practising mindfulness can be very beneficial in treatment of depression and anxiety, stress relief, and even, as more recently discovered, treatment of MS. Although many people think that ‘mindfulness’ and CARERS meditation are the same thing, that is not the case; in Helping loved ones fact, meditation is just one way to cultivate the state of It is not unusual for carers and family members to mindfulness – for example, you can go for a walk, drink also become depressed, so make sure you read the a cup of tea or even do the ironing mindfully. main article so you are also familiar with the signs. So, take a moment and put this magazine down. Meanwhile, if you have a family member or friend who Now, listen to the noises around you and look carefully is depressed, the first thing to remember is that it is at what is in the room. Stay focused. Whenever your nobody’s fault if a person is depressed. mind darts off to think of something else, gently bring your attention back to the present: see what is in front Here are some other strategies you can use: of you and hear the sounds. That’s mindfulness! • Talk to the person, let him or her know you have – Birgit O’Sheedy, Clinical Psychologist, noticed a change in his or her behaviour, and ask MS Australia – ACT/NSW/VIC whether there is anything you can do to give support. • Encourage the person to seek professional help. Ask whether he or she would like you to accompany or ACT mindfulness workshop drive him or her to the appointment. Sixteen people recently attended an eight-week • Look for ways to help the person keep up with his or mindfulness course at the MS Australia – ACT/NSW/ her everyday activities as much as possible. Try not to VIC centre in Deakin, Canberra. take on his or her usual jobs and tasks. The group consisted of 12 people with MS, and four • Encourage the person to remain or become involved in partners. The course was conducted by Sue Hays, a physical and social activities. clinical psychologist and mindfulness teacher attached • Realise that to support the person who is depressed, to the Simply Mindful centre. it is just as important to find time to look after your own “Being mindful can enrich your life and help balance health and wellbeing. the naturally evolved negativity bias of the brain,” Sue explains. “The course is designed so that participants You might also want to visit www.ruokday.com, a have the skills to deal more effectively with the physical community-based project that has resources to help and emotional challenges they face.” you get the conversation started. Thinkstock/Jupiterimages/ Getty Images/iStockphoto/
16 intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch 17 FEATURE Rising above depression Name: Diana Dillon Age: 59 Lives: Shellharbour, NSW Diagnosed with MS: 1993
If you meet Diana Dillon, you’ll notice she wears a bead bracelet. She made it herself, and if you look closely, you’ll see that the alphabet beads spell three words: ‘Breathe; Quietly; Calmly’. They have become Diana’s lifebuoys when the combination of fatigue and depression threaten to send her into a “downward spiral”. “If I do my breathing exercise, I calm down, my head clears and I can be more rational,” Diana says. If she doesn’t do the exercise, she is likely to become upset and aggressive and quickly afterwards guilty, depressed and anxious, in a tailspin that can leave her in a “dark hole”. I was assessed by Wendy Longley [Senior Clinical Diana first encountered that hole when she lost one of Neuropsychologist, MS Australia – ACT/NSW/VIC]. That her twin boys at birth. “I cried for years,” she says. “But was such a gift, because I learnt I could still learn. Until my surviving boy was growing, and so was his younger then I had given up my hobbies.” sister. Life got busy, and it remained good until the Diana also worked with Dr Gary Fulcher, Senior year I turned 40.” Clinical Psychologist, MS Australia – ACT/NSW/VIC. That was 1993, when Diana was diagnosed with MS. “He explained the link between fatigue and depression A severe relapse left her with vision problems and unable and how I needed to ‘bank my energy’ so I could use to talk or walk for several months. Relapses continued for some of it for pleasure.” He also taught her the breathing three years until a drug treatment was used to stabilise and mindfulness techniques she uses to help manage her MS. Meanwhile, her husband Neville gave up work to her fatigue and depression. “Later, I spoke to Birgit become her carer. [O’Sheedy, Clinical Psychologist, MS Australia – ACT/ “Although I’m blessed with a loving family, depression NSW/VIC], and she built on that.” became my nasty friend,” she says. “I felt alone, worried Diana has taken antidepressant medication, and that I’m a burden, and felt guilty that I’d changed recommends that if you suffer from depression you everyone’s lives.” find a GP who “takes MS into account with your other She had sought help, but nothing seemed to work. health problems”. She also noticed that November, December and January In terms of self-help, she says one of the most were her “danger months”, probably due to fatigue. “In important things she has learnt is “All we have is right February 2011, I hit rock bottom.” Not knowing where now; the past has gone, and we don’t know what the else to turn, Diana phoned MS Australia – ACT/NSW/ future will bring. You really need to be in the present, and VIC. “They got me into respite at Lidcombe. There, the breathing–mindfulness technique takes you there.”
Useful contacts • Lifeline, which provides a 24-hour, crisis telephone- • Mensline Australia, which is a national telephone- and counselling service: Call 13 11 14 or visit www.lifeline.org.au online-support service: Call 1300 789 978 at any time • Beyondblue, which provides information about or visit www.mensline.org.au treatments: Call 1300 224 636 or visit • The Suicide Call Back Service, which provides 24-hour www.beyondblue.org.au crisis counselling seven days a week: Call 1300 659 467 • The Black Dog Institute, which provides expertise in or visit www.suicidecallbackservice.org.au/ depression: Visit www.blackdoginstitute.org.au/index.cfm • SuicideLine (VIC) which provides 24-hour telephone • SANE Australia Helpline (National): Call 1800 and online counselling: Call 1300 651 251 or visit 187 263, 9am–5pm weekdays or visit www.sane.org www.suicideline.org.au/ n
18 intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch PB MS COMMUNITY MS Ambassador profile Jessica Grey gets out of bed at 4.30am to exercise. Thanks to her self-discipline, she has turned into a champion powerlifter who is keen to motivate other people.
Tell us about your weight lifting. I’ve been weight training for 10 years. My training helps me mentally, emotionally and physically. For example, it gives me energy and helps ease depression and anxiety. About 12 months ago, after my baby was born, to increase my motivation I decided to compete in powerlifting. I progressed to State level, and in June, I competed at the National Powerlifting Australia Titles in Brisbane. I was also asked to join the Paralympic powerlifting team with a view to going to the next Paralympics. I’m deciding whether I’ll commit to that.
Why did you decide to become an MS Ambassador? I wanted to share my positive mental state with other people who have MS. Because I’ve felt the benefits of exercise, I want to motivate other people to try it. Name: Jessica Grey Age: 27 Occupation: Formerly nurse; now What are some of the things you’ve done in your personal trainer role as an MS Ambassador? Lives: Melbourne with husband and baby son I’ve assisted in promoting and developing exercise and Diagnosed with MS: 2009 fitness education for people with MS. I’m also involved in Has been an MS Ambassador: speaking to fitness-industry professionals about how to work Since 2010 with people who have MS. I participated in the 24 Hour Mega Swim in Fitzroy and personally raised more than $1,000.
Tell us a bit about your MS journey. What is the message you most like to deliver in At 15, due to unforeseen circumstances after my parents your role as an Ambassador? divorced, I left home and was fending for myself. I was 16 I want people with MS, especially people who are newly when I first experienced MS symptoms. Over the years, I had diagnosed, to understand it isn’t the end of their life. You can vision problems, loss of feeling in my fingers and toes, and still achieve lots of things if you stay motivated and look after sensitivity to heat, but wasn’t diagnosed. In 2008, I woke your health and fitness. If you don’t have MS – and especially one morning and my feet were numb. Each day it got worse, if you’re an employer – I urge you not to overlook us. We still until I could no longer walk. When the doctors diagnosed have a great contribution to make to the wider community. n me after an MRI, I was glad to know I had a formal diagnosis and wasn’t going crazy.
What motivates you? I focus on what’s important, and I’ve stopped wasting I focus on what’s important, time on things that don’t benefit me or my family. Family is and I’ve stopped wasting important, even though I don’t have close contact with my extended family. My husband Harley and my son James are time on things that don’t my life, and I’m lucky to have a great relationship with my benefit me or my family. in-laws. Weight training and being fit and strong are also an essential part of my life.
Would you like an MS Ambassador to speak at your next corporate, school or community event? Contact the MS Ambassador Program team, via MS Connect, on 1800 042 138.
PB intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch 19 EVENTS For bookings or more information, email [email protected] or call 1800 042 138.
INFORMATION SESSIONS EVENTS: ALL REGIONS Program is subject to variation. TELECONFERENCES Please check when you make a booking. To register, please call 1800 042 138 Dates and times of more sessions will be available on our website. Learn About MS Suited to people recently diagnosed. Ask questions Learn About MS and learn more about MS and our services A medical update led by an MS nurse, this session is Date TBC; please call 1800 042 138 suited to people newly diagnosed and people wanting to meet people and learn more about MS and our Managing Fatigue services. The session is planned for March but the Learn how to manage MS-related fatigue in this two- details are yet to be confirmed part teleconference series March, TBC 6 and 20 February, 10.30am – noon Gloria McKerrow House, Deakin, ACT Continence Care in MS Learn about bladder and bowel problems: causes, PHYSICAL-ACTIVITY GROUPS assessment and treatment options 21 February, 10am – noon 21 March, 10am – noon Heartmoves for MS, maximising strength and flexibility, and aquatic- Working with MS (NSW & ACT only) exercise groups are held throughout Explore your rights and responsibilities at work, as well as superannuation, insurance and financial matters the ACT, NSW and Victoria. For exact 14 March, 7pm – 8.30pm locations and times, call 1800 042 138 or visit the ‘Health & Wellness’ section Carers Support Group (NSW & ACT only) Suited to people who care for someone with MS in of our website: www.mssociety.org. any capacity. Meet other people, share your situation au/health-wellness.asp and provide mutual support First Wednesday of the month, 1pm – 2.30pm
Electric Wheelchair Scooter Portable in Car Boot
Easy Rider 17 km range “SCOOT IN BOOT” Wide seat & retractable arm rest Calling for ACT & NSW Ambassadors We are seeking expressions of interest from MS Australia – ACT/NSW/ Quick Getaway! VIC clients who might be No tools needed Easy as an umbrella interested in becoming an click 1-2-3 MS Ambassador in 2013. PULL APART LIGHT WEIGHT A number of vacancies Heaviest part exist in NSW and the only 13kg ACT for the right people to join the Ambassadors Foldable team in this esteemed and Airport Friendly Total weight 30kg dynamic program. Battery pack easily detached To find our more or register interest, please call Stephen Papadopoulos on T.M. 1300 657 818 portable mobility systems (02) 9646 0600 or visit ambassadors- www.libertymobilityaids.com.au [email protected]
20 intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch 21
Liberty_132x88.indd 1 3/07/2012 4:06:48 PM For bookings or more information, email [email protected] or call 1800 042 138. EVENTS
INFORMATION SESSIONS 24 HOUR MEGA SWIM Learn About MS The 24 Hour Mega Swim is a fun team-relay event A medical update suited to people newly diagnosed for swimmers of all ages and abilities, so everyone is and people wanting to meet people and learn encouraged to join in and be part of the fun! more about MS and our services. The details of the Swimmers participate in teams of up to 15 people, exact topic for this session and the speaker are yet and each participant decides when he or she would to be confirmed like to swim and for how long. Money raised is used as 23 February, 10am – 1pm a contribution to the Go for Gold Scholarships, Financial Blackburn; details TBC Assistance Programs and for providing services that directly benefit people living with MS. Working with MS Go to www.megaswim.com to find a swim near you, Explore your rights and responsibilities at work, as well and follow us on Facebook and Twitter to keep up to VIC as superannuation, insurance and financial matters date with the latest news! 19 February, 6.30pm – 9pm Fitzroy 22–23 Feb Fitzroy Pool, Fitzroy Footscray North Melbourne 23–24 Feb North Melbourne Recreation Centre Medication Update Wollongong 2–3 March Aquatic Centre (URAC) MS Australia nurses will discuss the new and emerging Leeton 16–17 March Leeton Shire Pool medications available in Australia Geelong 16–17 March Leisure Link, Waurn Ponds 27 February, 11.30am – 1.30pm Shepparton 23–24 March Aquamoves, Kyneton Lakeside Shepparton Melbourne 13–14 April Melbourne Sports and Conversation with Centrelink for Carers Aquatic Centre This program is hosted by the Footscray Carer Peer Support Group. Join an FIS Officer from Centrelink and an MS Australia social worker to look at Carer Benefits 13 February, 6pm – 9pm Footscray
Get Active with MS Our physiotherapists discuss how to use fitness and exercise to help manage MS symptoms March 2012 Matthew (front row, left) and Location and time TBC Teresa (far right) with Thinking and Memory the team. Learn about common MS-related thinking and memory changes and how to manage them Enter the Melbourne Cycle 19 March, 10am – 12.30pm Taking part in the 2012 MS Melbourne Cycle Blackburn was an easy choice for the Dalle-Nogare family. Matthew’s wife Teresa was diagnosed with MS Managing Fatigue in August 2011, and Matthew has other family An overview of MS fatigue and how to manage this members and close friends who have the disease. invisible symptom “MS Australia – ACT/NSW/VIC provides an 11 February, 10am – 12.30pm incredible service to people living with MS,” Matthew says. “I’ve seen at close quarters the Benalla benefits gained from the amazing support 11 February, 5.30pm – 7.30pm network on offer.” Echuca Matthew and his team, Tour de MS, promoted 14 March, 7pm – 9pm their involvement at every opportunity, and his Blackburn personal fundraising goal of $2,000 soon rose to $7,500. The team was also successful and has vowed to return for the 2013 cycle to be held on PHYSICAL-ACTIVITY GROUPS Sunday 24 February. In the lead-up to the cycle, Teresa will be organising fundraising events such as movie nights, Tai Chi for People with MS sausage sizzles and dinner-dances as contributions Led by Konrad Dorn, Tai Chi to the fundraising goal of $20,000. classes are held at the Next year, some exciting changes will be introduced, including using a new start site and Nerve Centre in Blackburn. improving the route for the 50-kilometre course. If you need more details, To get involved, you can enter the event and call the Tai Chi instructor on encourage friends or family members to join you, 0411 887 696. sponsor a rider or team, volunteer to be an event staff member, or make a donation. Mondays, 12.30pm For more information, call 1300 705 340 or Blackburn; $10 per session visit www.msmelbournecycle.org.au Thinkstock/iStockphoto/
20 intouch spring 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic spring 2012 intouch 21 FAMILY & CARERS
CARERS Facebook friends forever Tracey Forman says that joining the carers’ Facebook community was “the best thing ever”. “I used to seek out chat lines in America, but connecting with Australians is so much better because I get my questions answered based on local knowledge,” Tracey explains. Tracey has been caring for her husband Eamon Taylor for eight years. Since 1996, Eamon had been Tracey and her husband experiencing symptoms such as Eamon. vision difficulties and fatigue. He was diagnosed with MS in 2000, and coped via MS Connect.” In fact, it was a Tracey also says it was a relief well for a few years. fellow carer, John Richardson, who to discover that her experience “But we moved from Sydney to recommended that Tracey join the was not unique. “You learn you’re Bellingen, NSW, and the stress of carers’ Facebook community soon not alone – other people are going moving meant his fatigue increased.” after it started. through what you are, and more Tracey eventually gave up work and “I go online every day now,” she importantly, they understand. I became Eamon’s full-time carer. says. “The best thing has been the cannot praise our Facebook community Because she is a carer living in a rural understanding I get from my Facebook highly enough. I recommend it to all area, she was soon feeling isolated. friends. When I ask questions, I get carers, because it’s confidential, which “There are no carers’ groups nearby, useful advice, and I’ve found it’s also means you feel comfortable chatting so I used to connect with other carers great to give as well as receive.” to other carers.” n
Connect online Facebook groups If you feel inspired to become part of the carers’ Facebook community, it’s easy to join. The MS Australia – ACT/NSW/VIC Carers group on Facebook is moderated by Brenda Fisher, Peer Support Volunteer and Victorian representative for the Carers’ Working Party. To request to join the group, visit www.facebook.com/groups/413493135353497/ Carers Week events Young carers and family members are encouraged To celebrate the inspiring work that carers undertake, to join the Young Carers Facebook group. To request MS Australia ACT/NSW/VIC and the Carers’ Working Party to join that group, go to held events to help raise awareness of National Carers www.facebook.com/#!/groups/359936620704868/ Week, which ran from 14 to 20 October. This year’s theme was ‘Be care aware’ in order to Carers’ online community You can also join our new online community encourage people to get to know more about unpaid family My MS Community, which is for providing support members and carers. to people living with MS as well as to their carers, In NSW, activities included an information stall conducted families and friends. in Martin Place by the community team as part of an event My MS Community is an initiative of run by Carers NSW and the City of Sydney, an MS MS Australia – ACT/NSW/VIC, and when you connect family barbecue held at Northcott Disability Services in to the site, you have the opportunity to share experiences Parramatta, and an information session entitled ‘Nurturing in a safe environment, because it is moderated by our the Care-giver–Care-receiver Relationship’ held at the trained Peer Support Volunteer moderators. Studdy MS Centre in Lidcombe. To join My MS Community, register at In Victoria, as part of a partnership initiative with Brainlink, http://mymscommunity.msaustralia.org.au/register a carers’ barbecue and walk were held at Jells Park in For more information, call MS Connect Wheelers Hill and a ‘pamper afloat for carers’ event was held on 1800 042 138.
during a cruise along the Yarra River. n Thinkstock/Hemera
22 intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch PB MS COMMUNITY
An accessible garden Communities support When Brian and Penny Tetlow landscaped their Canberra garden, the MS cause they had no idea it would attract such interest. “Penny was diagnosed with We’d like to thank the many who take the time to raise MS in 1990,” Brian says. “Fortunately, funds to support people living with MS. Here is how she only uses a walking stick, but our some have rallied together to help make a difference. landscaper insisted we have wide, wheelchair-accessible paths.” Almost as soon as the garden was Tori swims the Channel completed, in 2007, the couple were asked to make it part of the Open On 20 July, after two years of Gardens Australia scheme. However, preparation and 14 hours of physical the first time that Brian realised the pain, Tori Gorman staggered on to the pleasure the garden could give was French coast. The seasoned ocean when his elderly mother, who uses a swimmer had achieved a long-held wheelchair, got such joy from spending personal goal of crossing the English time in it. “We decided to open it to the Channel from Dover and raising more public to raise money for MS.” than $60,000 for people living with On 1–2 September, more than MS. “The swim was challenging, year.” Despite that exposure, though, 400 people viewed the garden and especially the last hour and a half, Tori wasn’t prepared for the response. about $1,000 was generated from a when I had to sprint to make the tide “So many people contacted me to portion of the entry fees. “We were to land on Cap Gris Nez,” she says. say they knew someone with MS. I also able to generate publicity “Miss this point and you have another didn’t realise how many people are about MS,” Brian says. six hours until the tide turns and you affected.” In fact, when she seemed can make it on to French shores.” set to be overwhelmed by the Club makes a difference Sydneysider Tori, 30, had pledged pain, she used that knowledge as The Solarino Social Club in North her Channel crossing to benefit motivation. “I had to finish. I owed it to Coburg, Victoria knows how to put people living with MS because she myself, my family and my supporters, on an event. The lively and well- knows a brother and sister who have and I wanted to make everyone who’d established club has 385 members, all been diagnosed with MS. “At school, contributed to helping me raise money of whom have one thing in common, I also did the MS Readathon every for multiple sclerosis glad they had.” n having recently been touched by MS. Sadly, over the past two months, Roll of Honour Francesco Attardo and Coradina Gervasi, relatives of members, passed We would like to thank the following community members who away. Both had MS. In August, the helped raise funds for MS over the past three months: club held a special event to raise funds l Henry Frazer – Rockabilly Concert l Paul Swan and his committee – for MS Australia. Members, friends and l Brooke Wilson – Sutherland 2 Mudgee Draft families came together to celebrate the Surf marathon l Nigel Dobson – Kilimanjaro climb lives of these two wonderful people. l Holly Landman – auction l Jackie Brown, Mama Lina’s Restaurant, With support from local businesses l Nicole Gillette – Red Night Essendon – MS Luncheon and a dedicated committee, club l Raha Mohiuddin – workplace raffle l Solarino Social Club, G. Gibilisco, members raised $10,130 from G. Gervasi, San Padre, Pio l 40 participants – 2012 City 2 Surf Association – MS Dinner Dance the event. What a difference that l Denis Reid – 2012 City 2 Surf l Belinda Carusi – My Mobile Trainer amount will make in other people’s l Rachel Lees and family – in lieu of Fun Run lives – thank you! 40th birthday l Ken Mansfield and team – l Jinous Ahadizadeh – Gordon markets The Last Leg bike ride l Merrylands Bowling Club l Trevor Turner – Sunbury Bowling l Brett Cameron – 24 Hour Mega Shear Club fundraiser l Julia Berkman – 2012 Brisbane l Peter Wegener Running Festival l Angela Scarcella – St Marys l Shane Holbrow – gym-bike endurance School fundraiser l Kim Rudder – Open Garden l Myer Community Fund, Eastland l 36 participants – 2012 Blackmore’s l Meaghan Conroy – sausage sizzle and PB intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvicSydney Running Festival cupcake stall summer 2012 intouch 23 MS COMMUNITY
Volunteers in action Volunteer opportunities How our dedicated volunteers are helping to make a We are always looking for more volunteers, and here are some difference for people living with MS opportunities we’re aiming to fill right now:
VICTORIA A big thank you to everyone, including l Volunteers are needed to our lunch volunteers. assist in MS Community Shops in Daylesford, Melton, Waverley, Malvern, Monbulk, Fairfield and Kew.
NSW–ACT l A female volunteer is required to assist a female client in the Strathfield area in order to organise paperwork and photos. l A social-support volunteer who can sew is required at Lidcombe for half a day each week. l A social-support volunteer is required to read to a client at Lidcombe for a couple of hours a week. l A male volunteer is needed to provide social support to a male client in Regents Park. l Gardening volunteers are needed at Lidcombe to look after our new native garden Gong ride relies on volunteers around the Studdy MS Centre. More than 350 volunteers pitched in volunteers distributed lunches and on Sunday 4 November to help stage merchandise and transported luggage If you’re interested in these the 31st annual Sydney to the Gong for the participants. or any other volunteer role MS Bike Ride. The event is a major At the finish site, other volunteers across our regions, please call fundraiser for MS Australia − ACT/ wrapped bikes in bubble wrap and MS Connect on 1800 042 138. NSW/VIC and this year,10,000 cyclists drove them and their riders safely back pedalled from Sydney to Wollongong. to Sydney. Even a handful of volunteer smiles and enthusiasm were rewarded Our signage volunteers hit the road massage therapists were available for when the sun arrived and a nice as early as 2am to place hundreds of cyclists who required attention after tailwind came out to play, spurring signs along the route, and equipment the long ride. the cyclists up those steep climbs crews bumped in marquees and water These activities were coordinated all the way to Wollongong. supplies to keep riders comfortable by volunteer base managers, base Once again, the Gong ride was at rest stops. coordinators and sector managers, a fun day for everyone thanks to the From the Princes Highway to who managed groups of volunteers efforts of our volunteers and their the Royal National Park, across the and acted as the eyes and ears for willingness to go the extra mile. Seacliff Bridge and all the way to authorities in order to ensure safety Their hard work and professionalism the finish line, our volunteer route along the course. were important in the raising of more marshalls kept the riders safe while In the early morning, our volunteers than $3 million for Australians with MS guiding them to Wollongong. More braved drizzling rain and fog, but their and their families. n
24 intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch 25 Spring Fun Day success After her sister was diagnosed with MS, in 2010, Veronica Furnier-Tosco phoned MS Connect for information. “They helped me immensely,” says Veronica, a Senior Project Manager and Team Leader with City Design, a City of Melbourne enterprise – and so much so that when Veronica was looking for a team-building exercise, she chose to do something for people living with MS. “Over the years, our team has packed boxes and cooked for homeless people, but this was the first event for MS people.” The result was last Veronica Furnier- year’s Spring Fun Day, which was so successful they held Tosco, second from another one on 16 November, in North Melbourne. “We’d right, and her team. intended to hold only one fun day,” Veronica explains, “but we really enjoyed it. At the end of the day, when someone said, were music, games and painting, but the most popular activity ‘See you next year!’ we said they would.” was the mini-manicures we offered.” About 50 people with MS attended this year’s fun day, And what does Veronica’s team get out of it? “We like including Veronica, her team of seven volunteers and her sister to volunteer because we become a stronger unit. After we Lorena Woolridge. “It was great fun,” Veronica says. “There complete an event, we’re on a high.” n
The Goodman team and landscaping volunteers.
Lidcombe gardens revamped About 40 staff members from property company Goodman General Manager for Human Resources, when the vehicle Property Services Australia and landscaping companies DJ’s was handed over during an official ceremony at Lidcombe. Property Services and Skyline Landscape Services upgraded “We noticed that the gardens could have done with the gardens around the Studdy MS Centre, in Lidcombe, some work, so we organised it from there,” Dominic says. during three working bees. “Our people enjoyed the opportunity to spend the day Each team of about 12 people spent a day clearing weeds outdoors and do something meaningful for the residents and ‘badly performing’ shrubs and planting approximately of the Studdy MS Centre. We were also very pleased to 400 native plants, which were also donated. The teams also meet many of the staff and residents and for the opportunity mulched the area. to learn more about the disease.” The teams were led by Goodman Property Services’ Also, the two existing irrigation systems were upgraded and Dominic Sorbara, Assistant Property Manager, who also a new irrigation system was installed, thanks to the generosity enrolled the landscapers to lend their expertise. of Wagner Group Services, to ensure that the new plantings A few months ago, the Goodman Foundation donated a would survive and flourish. new HiAce van, and Dominic accompanied Jason Little, the The staff and residents at Lidcombe are grateful for the company’s General Manager for Australia, and Jo Cameron, hard work and generosity of everyone involved. n
24 intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch 25 MS COMMUNITY Wise words After his satisfying career Make friends online was cut short, this NSW man volunteered to Welcome to My MS Community, a new online community for providing support other people. support to people living with MS as Bob Morris knows what it is to men have more trouble articulating well as to their carers, families and fear the unknown. When he was their concerns. My role is to listen. friends. My MS Community is an diagnosed with Relapsing-remitting We might talk about politics or the initiative of MS Australia – MS, in 1998, the first thing Bob weather, and when the men feel ACT/NSW/VIC, and you can thought of when he woke each comfortable, they’ll open up.” use it to connect with people morning was MS. “I worried about Bob’s younger brother was and share your experiences in a what was going to happen,” he diagnosed with MS a few years safe environment. recalls. At the time, he was director of before Bob. “I was on the phone to This new community replaces IT for NSW Lotteries. “I loved my job, him straight away, and it helped. the former mc2, which was hosted but a busy career and MS don’t mix.” The grace and curse of this disease by Vicnet and was closed in June Now 53, Bob retired in 2002 and is that everyone’s on a different path, 2012. Although MS Australia volunteered at a community centre but it’s good to talk to someone owns the new community, Vicnet for a while, teaching IT skills. In 2007, who understands.” will continue to conduct the when he and his family moved from Bob continues to find peer support Helpdesk service in order to provide Sydney to the Southern Highlands, a rewarding experience. “I tell people assistance to anyone experiencing he decided to become a Peer who have been newly diagnosed technical problems. Support Volunteer. Since then, he’s that one day they’ll wake up and MS The Helpdesk toll-free number supported more than 20 people who won’t be the first thing they think of. is 1800 629 835, and you can contact it from 9am to 5pm have MS, including 10 men. “While At some stage, you move past the MS Aust Intouch Mag 210 x 140 OL.pdf 1 19/11/12 6:05 PM we are all afraid of the unknown, fear of the unknown.” n Monday to Friday. Also, our trained Peer Support Volunteer moderators Debbie, Weekend to remember Mark, Pat and Virginia look forward About 14 years ago, Albury resident to catching up with you via My Wayne Paull was enjoying a coffee MS Community. There are two with some people who also live with communities: one for people living MS. The idea of having a weekend with MS, the other for carers, family away with partners came up, and has members and friends. People since developed into an annual event. throughout Australia therefore have The 13th gathering of the group the opportunity to meet online and was hosted in September by Virginia Over the years, the group has share their experiences of life with MS. One of the advantages of Vester, in Tumut, NSW, and 23 met in Wagga Wagga, Albury, Griffith C people attended. “We had people and Jerilderie, and in Campbelltown, connecting and chatting online is M from Canberra and as far away as south-west of Sydney. Virginia says that people who are geographically Geelong,” Virginia says. “On Saturday her husband looks forward to the or socially isolated are able to Y afternoon, we have our traditional gatherings as much as she does. “We communicate with other people. CM meet-and-greet over drinks and love catching up with people we’ve My MS Community is easy to MY nibbles. Later we gather for dinner, met before, and meeting newcomers. use! Go online and register at CY which is followed by breakfast on We have varying degrees of disability, http://mymscommunity.msaustralia. CMY Sunday. The host arranges a venue, and yet we feel a kind of unity.” org.au/register or call MS Connect K usually a motel, and some people For next year’s gathering, email on 1800 042 138. n stay for two or three nights.” Virginia at [email protected] n
For more information about the Peer Support Program, or to find a support group near you, please phone MS Connect on 1800 042 138.
26 intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch 27 Support group profile Suzanne Donaldson, now a Community Support Worker, In the ACT, the Taking Control Peer with David Robertson. Support Group combines learning with cups of tea. Group convener David Robertson suit people who want to take a positive approach to living outlines its positive focus. with MS and are keen to maintain and improve their health.
Why was the group established, and how did you What does the group do? become involved? We usually have a speaker, such as a scientist from one When I was diagnosed with MS, in early 2004, I was of our local universities. We cover topics such as diet, looking for ways to help myself, and I attended a retreat with meditation and exercise. Depending on the speaker, we can Professor George Jelinek, in Melbourne. Then, in 2005, I get 30 people, but on average, 15 to 20 people attend. organised for Jelinek to come to Canberra to conduct a mini-retreat for people who have MS. After that event, many Do you have any advice for people who are people were keen to follow his regimen of diet, meditation considering joining a support group? and exercise, so with the support of Suzanne Donaldson, At first, I stayed away from people who have MS, because from the MS organisation, we started the group. I thought I’d be seeing my future in a wheelchair – but I was wrong. It’s usually a joy to talk to someone else who has When does the group meet? MS. It’s a disease that fosters friendship because barriers We meet once a month, at 2pm for two hours on a Saturday, are broken down and you quickly get close to other people at the Deakin office of MS Australia – ACT/NSW/VIC. Over who have MS. I urge other people not to hide themselves the years, the group has broadened from including people away: socialising is important for your wellbeing, so joining a support group is good for your health. n whoMS Aust are Intouch interested Mag 210 in thex 140 Jelinek OL.pdf way, 1 but19/11/12 it continues 6:05 PM to best
C
M
Y
CM
MY
CY
CMY
K
26 intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch 27 ‘EMERGING TREATMENTS’ series: PART TWO Oral treatments Taking a tablet rather than administering an injection is convenient, so a good deal of research is being undertaken into various oral options.
There are oral medications available for treating MS and for treating MS symptoms. Some are already available on prescription whereas others are still being subjected to clinical trials. Two that are already available are fingolimod, which is used as an MS treatment, and fampridine, which is prescribed for people with MS in order to improve their walking. Regardless of their availability, both drugs were subjected to exhaustive, time-consuming trials before being approved. This is for good reason, because it is important that all new treatments be extensively tested for safety and efficacy before being made available. However, problems can arise even when a drug has been subjected to the various trials and is about to be launched. In addition, approval for it to be covered under the Pharmaceutical Benefits Scheme (PBS) can seem slow. Although neurologists welcome new oral options, many might advise patients to continue with their existing drug regimen if it seems to be working and the benefits outweigh the risks. Obviously, the key question for the person living with MS is ‘Which drug should I take so my chances of acquiring a disability are minimised but that also has the most acceptable profile of possible side-effects?’ The choices can seem daunting, and a drug that might be suitable for one person might not be right for another. This is why it’s important to discuss all options with your neurologist and health-care team. To help you understand your options, take the time to review this outline.
Treatments for MS infection, diarrhoea, back pain, abnormal liver-enzyme Fingolimod levels, and coughing. Less common but potentially This drug has the product name Gilenya and is a serious side effects are a slow heart rate when the disease-modifying treatment for people with treatment is started, breathing difficulties, increased Relapsing–remitting MS (RRMS). risk of infection, skin cancer, and macular oedema How it works: It binds to the surface of white blood cells (swelling in the back of the eye). in the immune system, traps them in the lymph nodes, The drug has not been tested among people and prevents them from attacking cells in the central younger than 18 or women who are either pregnant or nervous system. breastfeeding, so the side effects in those groups are In clinical trials, it has been shown to lead to: unknown. The safety, tolerability and efficacy of the drug • a reduction in the frequency of relapses beyond two years and any long-term side effects remain • a delay in progression of physical disability. unknown despite the benefits shown in the clinical trials. Administration: Before the first dose is administered, various tests have to be conducted such as blood Teriflunomide screening, an ECG, a chest X-ray, and skin and This drug has the product name Aubagio and was eye checks. Pregnant women also have to undergo approved as an RRMS treatment in the US by the Food counselling. The first dose is given in a doctor’s office or and Drug Administration (FDA) in September 2012. In clinic, where the person is observed for six hours so his November it was approved by the Australian Therapeutic or her heart rate and any adverse side effects can be Goods Administration (TGA). It is still to be considered by monitored. After the initial dose, the person takes one the Pharmaceutical Benefits Advisory Committee (PBAC). capsule a day. Prescription of the drug is based on strict How it works: It blocks an enzyme that is required for criteria and the treating neurologist’s medical opinion and proliferation and functioning of rapidly dividing cells such close supervision of the person. as the T- and B-lymphocytes, which are immune cells that
Side effects: These can include headaches, influenza are thought to be especially damaging in MS. Thinkstock/iStockphoto
28 intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch 29 Why I like a tablet “I have a fear of injections, so when I was told I’d have to inject myself for the rest of my life, it didn’t sit well with me. “I also disliked the red marks, bruising and swelling at the injection site and the inconvenience of having to keep the medication refrigerated. I recently travelled overseas, and I found it so much easier to take a tablet every morning. “But the most important factor is that despite being on an injectable medication, I had relapses often. I started taking Gilenya (fingolimod) in March 2011, and I haven’t had a relapse since. I still have my existing MS symptoms, but no new ones. “The injections also had another side effect for me: they were a constant reminder that I have MS. With the tablet, it’s a bit easier to forget because it’s such an effortless task, and I appreciate that.” – Stephen, 33, diagnosed with RRMS in 2001
In clinical trials, it has been shown to lead to: effect on relapses and disability progression over the long • a reduction in frequency of relapses term could be examined. BG-12 has been submitted • a delay in progression of physical disability for licensing in the US and Europe and is also being • reduction of brain lesions. assessed by the TGA in Australia. Administration: The person takes a 7 or 14 mg tablet How it works: Its mechanism of action is not fully once daily. understood, but it is thought to modulate the immune Side effects: These can include headaches, diarrhoea, system and protect the nervous system via a molecule fatigue, back pain, influenza infection, thinning of hair, called Nrf-2. When the Nrf-2 pathway is activated, nausea, and urinary-tract infections. A more serious side the neurones are defended against death caused by effect is elevated liver function, for which ongoing liver oxidative stress, the blood–brain barrier is protected, and tests are required. maintenance of myelin integrity in the central nervous system is supported. Dimethyl fumerate Administration: The person takes the medication as This drug is also known as BG-12. In Europe, it has been tablets two or three times a day. used as a psoriasis treatment for many years, and at the Side effects: These can include flushing and feeling hot, time of writing, it was being investigated as a therapy for headaches, and gastrointestinal upset such as diarrhoea, MS, particularly RRMS. In two recent Phase III clinical nausea and abdominal pain. trials, relapses were shown to be reduced by at least 50 percent and disability progression in RRMS patients was Treatment for MS symptoms shown to be slower compared with that in patients who Fampridine were given a placebo. On MRI, relapses and new lesions This drug has the product name Fampyra and is a were also shown to be reduced compared with the effects symptomatic treatment for improvement of walking. In of another medication, glatiramer acetate. These two Australia, it is available by private prescription. At the time
Thinkstock/iStockphoto Phase III trials have been extended so that the drug’s of writing, it was being considered by the Pharmaceutical
28 intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch 29 ‘EMERGING TREATMENTS’ series: PART TWO
Benefits Advisory Committee (PBAC) for listing under the The drug has not been tested in people younger Pharmaceutical Benefits Scheme (PBS). than 18 or in women who are either pregnant or How it works: The active ingredient is a potassium- breastfeeding, so the side effects in those groups are channel blocker. In MS, damage to or loss of myelin (the unknown. Prescription of the drug is based on the treating protective sheath that surrounds the nerve fibres) can neurologist’s medical opinion and close supervision cause interference in the nerve signals between the brain of the person. and other parts of the body. In areas of myelin damage, International trial: In the current study, researchers are the potassium channels that help carry the electrical examining the quality of life of people under long-term impulses along the nerve fibres become exposed. treatment of fampridine-PR, 10 mg twice daily. The trial is Fampridine is thought to block the exposed potassium being conducted in nine countries, including Australia. channels, whereby the electrical impulses are able to continue along the damaged nerves. Why drug approval takes so long According to clinical studies, the drug leads to an If you are waiting for new treatments to be approved, it can improvement in delivery of nerve signals between the be a frustrating process because it takes so long. central nervous system and the body that are involved In Australia, the manufacturer puts the application for in walking control, so that walking speed and ability are the treatment before the Therapeutic Goods Administration improved. In clinical trials, the drug was shown to be (TGA), a division of the federal Department of Health and effective in about 30 percent of people. Ageing. The TGA can take up to 295 working days to Administration: The person takes a 10 mg tablet evaluate the application, or longer if more information has twice daily, 12 hours apart. Because they are to be supplied. The average time for a medicine that has modified-release tablets, they must be swallowed not been previously used in Australia is 203 days of TGA whole. It is recommended that the person cease time and 96 days of waiting for the manufacturer treatment if he or she shows no improvement in to provide extra information. Altogether, about 14 walking ability after eight weeks. months are required. Side effects: The most common are insomnia, Once a medication has been approved balance disorder, dizziness, headaches, asthenia by the TGA, it can be sold. However, there (lack or loss of strength and energy), back pain, and will be no government subsidy, and anyone urinary-tract infections. wanting to use the medication will have to A less common but potentially serious side effect pay the full cost. is increased risk of seizures. The drug is therefore not If the manufacturer then wants the recommended for people who have a history of seizures medicine included in the Pharmaceutical or a high risk of them. It is also not recommended for Benefits Scheme (PBS), it will have to make people who have moderate or severe renal impairment, a separate application to the Pharmaceutical are hypersensitive to fampridine or are being treated with Benefits Advisory Committee (PBAC). The another form of fampridine. PBAC meets in March, July and November. At
Here is a snapshot of how and when oral medications for MS have emerged over time:
2003 2004–08 2009 2010 Fampridine is shown to Oral medications A Phase III study of fampridine, In January, fampridine is licensed lead to an improvement are subjected involving 301 people with both by the FDA in the US, under the in walking speed for to various trials relapsing and progressive MS product name Ampyra. some people with MS. internationally. who were treated for 14 weeks, It had previously been is reported in The Lancet. A In September, fingolimod is studied as a possible greater proportion of people approved by the FDA as a first- treatment for fatigue and taking fampridine are shown to line therapy for RRMS, under the cognitive problems. have a consistent improvement product name Gilenya. in walking speed, compared with people taking a placebo. Thinkstock/iStockphoto
30 intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch 31 Useful resources • Speak to your neurologist about the treatment that best suits your individual circumstances. • MS Australia – ACT/NSW/VIC provides the meeting, the committee will evaluate how effective the information about available MS treatments at medicine is along with how effective it is for the condition www.msaustralia.org.au cost wise. If the medicine is approved for subsidy, it will be • The MS Research Australia Clinical Trials Network entered into the schedule at the next major update. provides information at www.mstrials.org.au Major updates occur in April, August or December. This • Call MS Connect on 1800 042 138 to ask about means it is likely that the time between when the manufacturer our Immunotherapy Support Program which applies to make the medicine available in Australia and when it provides information, training and ongoing support is widely available will be at least 18 months. for managing your immunotherapy treatment. From the time that the Phase III trial results are announced, it is therefore likely that at least approximately 2.5 years will elapse before the medication is widely available in Australia. Also, the Federal Government now requires that all PBAC recommendations go before Federal 2012 Cabinet for determination of the PBS subsidy. At the time of writing, a few oral medications are being subjected to Phase II and Phase III trials More in our series internationally. They include laquinimod and In the next few issues of Intouch, we will continue to look dimethyl fumerate, also known as BG-12. at the evolution, current status and future direction of n Laquinimod is an oral treatment that acts on the specific MS treatments. immune system to shift it to a less inflammatory state. In two Phase III clinical trials completed in early 2012, it leads to a slight reduction in the relapse rate but also This article has been reviewed by Dr Elizabeth McDonald, slowing of RRMS progression. At the time of writing, Medical Director, MS Australia – ACT/NSW/VIC and clinical trials for specifically examining the effect of Dr Lisa Melton, Research Development Manager, MS laquinimod on disability progression are underway. Research Australia. References can be provided on request Laquinimod has been submitted for licensing in Europe. to the editor. In Australia, at the time of writing, registration of dimethyl MS Australia – ACT/NSW/VIC does not recommend any fumerate, or BG-12, is being considered by the TGA. specific disease-modifying treatment. In April, the European Medicines Agency (EMA) recommends new advice to health-care professionals in order to reduce the risk of fingolimod-associated adverse effects on the heart. It advises doctors not to prescribe 2011 the drug for patients who have a history of cardiovascular and cerebrovascular disease or who take medication for Cladribine tablets, under the product name Movectro, lowering the heart rate. However, when treatment with are approved for RRMS treatment – the first oral fingolimod is considered necessary for those patients, disease-modifying drug approved for use in Australia. their heart activity should be monitored at least overnight Some months later, it is withdrawn by the manufacturer following the first dose, and doctors should seek a for commercial reasons. cardiologist’s advice about appropriate monitoring. In March, fingolimod (Gilenya) is licensed in the UK In July, the FDA issues a safety announcement about for people with rapidly evolving severe RRMS (two or the risk of seizures in the weeks following the first dose more relapses a year) and as a second-line treatment of fampridine. Most reported instances have been in for people whose MS remains active despite treatment people who have no history of seizures. The FDA also with one of the interferon-beta drugs. recommends that kidney function be checked before treatment starts and then at least annually and that In Australia, fingolimod (Gilenya) is approved for people who miss a dose should not take an extra dose. RRMS treatment and becomes eligible for PBS reimbursement from 1 September, after the Federal In September, teriflunomide (product name Aubagio) Government passes final approval in June. is approved by the FDA in the US for Relapsing–remitting MS. This once-daily oral therapy acts on the immune In May, the TGA approves fampridine (product name system to lead to a reduction in relapses, slowing of Fampyra in Australia) as a symptomatic treatment progression of physical disability, and reduction of for improving walking in people with MS. At the time brain lesions. of writing, it was being considered by the PBAC for In November, it is approved by the TGA in Australia. listing under the PBS. Thinkstock/iStockphoto
30 intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch 31 HEALTH+WELLNESS Take charge of your health South Eastern Sydney Local Health District The hot weather can cause MS symptoms to worsen, so take a look at these cool options.
Multiple Sclerosis Clinic Many people with MS have difficulty in summer because even a small increase in body temperature can exacerbate symptoms. This worsening is temporary, however, and when the body cools down, the symptoms usually settle, but it’s a good idea to consider using cooling garments or turning up the air conditioner as preventive measures. For some of the cool vests, you have to freeze the components, whereas you have to soak others in water, so it’s best to find options that suit your lifestyle. l Cooling vests come in various styles. Many are made from close-fitting wool or micro-fibre and feature non-toxic gel, which is designed to be soaked in water, In helping to address the healthcare needs of people whereas others hold cool packs that have to be stored with Multiple Sclerosis (MS) living in South Eastern in the freezer. Sydney and Illawarra Local Health Districts, the SESLHD l Cooling hats work according to principles similar to has opened a MS Clinic at Prince of Wales Hospital (POWH). those applied to cooling accessories, but styles can vary from caps to hard-hat liners. The MS Clinic is dedicated to the diagnosis and long-term l Cooling accessories range from neck wraps to head care of patients with MS and related disorders, and utilises bands and wrist wraps. Most are made of fabric and are the extensive multidisciplinary services available at POWH. filled with a polymer gel you have to soak in water. You The MS Clinic is run under the direction of A/Prof Arun Krishnan, can find these products in pharmacies and sports stores. Consultant Neurologist, Prince of Wales Hospital who has Also remember to avoid hot showers; plan activities a special interest in Multiple Sclerosis and is currently for cooler parts of the day; use clothes and linen made of involved in related research. natural fibres; and when the mercury climbs, either have a cold bath or shower or head to the pool. n Contact details: Institute of Neurological Sciences Help with cost of air conditioning Prince of Wales Hospital People with MS are able to get assistance for their Level 2 High Street Entrance air-conditioning costs. For details, contact: Randwick NSW 2031 National The Australian Government’s Essential Medical Equipment Payment. Call Human Services (Disability, Fax all referrals to A/Prof Arun Krishnan: (02) 9382 2428 Sickness and Carers) on 13 27 17 or visit www. humanservices.gov.au/customer/services/centrelink/ For appointments phone: (02) 9382 2414 essential-medical-equipment-payment NSW The Medical Energy Rebate: www.trade.nsw.gov. All patients are bulk billed. au/energy/customers/rebates/medical-energy-rebate- questions. The Low Income Rebate: www.trade.nsw.gov. Low waiting times. au/energy/customers/rebates ACT For concession information, visit www.dhcs.act.gov. Email: [email protected] au/wac/concessions/life_support https://www.sesiahs.health.nsw.gov.au/MS/ Victoria For concession information, visit www.dhs.vic.gov.au/for-individuals/financial-support/ Once a booking is made, concessions/energy/medical-cooling-concession or patients will be sent a letter with appointment details. www.dhs.vic.gov.au/for-individuals/financial-support/ concessions/energy/annual-electricity-concession
32 intouch summer 2012 www.msaustralia.org.au/actnswvic HEALTH+WELLNESS Spotlight on: The National Disability Insurance Scheme
The proposed National Disability Insurance Scheme (NDIS) could be the most significant policy development for the disability sector in a generation – but how will it lead to improvements in the lives of people living with MS?
The Federal Government has allocated $1 billion towards establishing the NDIS, and five launch sites are due to be established by mid-2013 for providing care and support to an estimated 20,000 people. During this initial phase, these people will have their needs assessed and individual plans developed for them so that ongoing personalised care and support can be delivered over their lifetime. Meanwhile, MS Australia – ACT/NSW/VIC is working collaboratively with other State and National neurological disability organisations in order to provide a collective voice in a bid to influence the key decision makers. Naturally, people living with MS, and their carers and families, are keen to know what impact the scheme will have on their life. Recently, Daniel Kyriacou, National Corporate Communications Manager with the NDIS, spoke to MS Australia – ACT/NSW/VIC staff members about the scheme. He also answered the following questions for Intouch. Is there an age cut-off? The Productivity Commission recommended that the How will the NDIS be better than the NDIS support people with a disability up to the age of 65. current system? It would then be phased down as the aged-care system The current disability system is inefficient and under- increased its level of funding and support. funded, and gives people with a disability little choice and no certainty. The NDIS is designed to fully fund the support How will the decision be made about how of people with a disability. Under the NDIS, people with a much money is allocated to whom? disability will be given choice and control over the services, The Productivity Commission recommended that the supports and equipment they need. funding assessment be needs based. Throughout Australia, about 220,000 people are receiving funded How easy will it be to access services? support. The aim of the NDIS is to fund supports for more The Productivity Commission envisages a national disability than 410,000 people, on average providing them with a system in which offices are based in the community. Under higher level of funded support. this model, people with a disability would be assessed based on their needs and then develop an individually Will the amount of money per person tailored plan and set of supports. be capped? [Editor’s note: The Productivity Commission is the No; under the NDIS, people with a disability will have Australian Government’s independent research and a legislative right to receive the equipment and services advisory body for a range of economic, social and they need. environmental issues that affect Australians’ welfare.] Will there be long waiting lists? Will access be means tested? The aim of the NDIS is to fully fund the disability system The Productivity Commission recommended no and remove the rationing that leads to waiting lists. That’s means testing for the NDIS. It will be a universal why the NDIS costs twice as much to run compared with system, like Medicare. the existing disability system. Thinkstock/Jupiterimages
PB intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch 33 HEALTH+WELLNESS
Will there be provision for the progressive nature of diseases such as MS? Yes; people will be re-assessed, and their level of support will be changed as their needs change.
Will there be special provisions Alliances formed for emergencies? MS Australia – ACT/NSW/VIC is actively involved in At the moment, only the basic structure of the NDIS has the Neurological Alliance Australia (NAA), an alliance of been outlined; we are yet to see all the details about how it not-for-profit peak organisations that represent adults will run, including provisions for emergencies. and children who have a progressive neurological or How does this work in conjunction with muscular disease. private health care and other insurances? The Alliance was established to promote improved quality of life for people who have this type of condition The NDIS [differs from private health insurance in that it] is and to promote funding in order to support research. It not insurance you can purchase. The government will be is also involved in lobbying in relation to the NDIS. providing a guarantee of support [akin to Medicare]. People The other members of the Alliance are Parkinson’s will still be able to purchase private health cover. Australia; Alzheimer’s Australia; Huntington’s Australia; Motor Neurone Disease, Australia; and the Muscular Dystrophy Foundation Australia.
What we are doing A lot of decisions are yet to be made, and the NDIS’s operational design still has a way to go. It’s anticipated that many of the recommendations the Productivity Commission made in its report will be adopted, but that outcome is not a given. It is therefore important that MS Australia – ACT/ NSW/VIC continues to contribute to the conversations via the extensive consultation forums being run throughout the States and Territories. This is imperative if we are to influence the practical translation of the recommendations and high-level principles of the NDIS to improve care and support outcomes for people with MS and other neuro degnenerative disorders. Information for carers As a result of feedback from members, National Will assistance for carers also be provided, such as Disability Services, the Australian peak body for non- treatment for back pain or depression? government disability services, has recommended Under the NDIS, carers’ lives will dramatically improve changes to the draft statements about ‘eligibility’ for because people with a disability will have more support. the NDIS’s ‘reasonable and necessary supports’. The NDIS does not include a plan for funding direct Two of the recommendations are especially relevant support for carers. to people with MS as they age. They are: l to include people who receive a diagnosis of a Will carers be able to access the service on neurological condition or significant sensory loss behalf of a person with MS? before the age of 65 but who are not expected to When people with a disability require help in making need support until they are older than 65 some or all of their support choices, family members l to improve the interface between the aged-care and will be able to assist. disability systems if the ‘age’ criterion remains. We will continue monitoring these issues, and others Will carers have input into the decisions being made? related to the NDIS, and working towards ensuring that The only time that carers will have input will be in situations the needs of people with MS are met. in which people with a disability require assistance in making some or all of their support choices. In other − Deborah Farrell, Manager Complex Care, circumstances, the person who has the disability and is MS Australia – ACT/NSW/VIC
involved in planning will have the choice. Thinkstock/iStockphoto/Jupiterimages/Getty Images
34 intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch 35 HEALTH+WELLNESS
How to get involved What does the term ‘insurance’ mean in the Will the system have tiers? context of the NDIS? There are three tiers in the NDIS [in the Productivity The term ‘insurance’ is confusing. The system will be Commission report]. The first tier is for all Australians, based on a social-insurance model [providing no-fault and its focus is on removing barriers for people with a lifetime benefits and an entitlement that is not means disability to access the community. The second tier is for all tested] similar to the ‘motor-vehicle accidents’ scheme. people with a disability to help them to access community All Australians will, in this sense, be insured by the assistance when they require it. The third is for people who government. People covered under the NDIS will have have a severe disability and require assistance. The NDIS an individual-support package. assessment criteria are yet to be determined.
Which organisations are working towards getting the NDIS up and running? Advocacy Coordinators Members of the disability community have come together to call for the NDIS. The Every Australian Counts Our newly appointed MS Australia – ACT/NSW/VIC campaign is run by a coalition of representatives Advocacy Coordinators Tyrell Heathcote and Julie from disability-service providers, carers’ organisations Newbury will be engaging and consulting and disability-advocacy organisations. with people with MS and their families and local service providers in order to understand the issues. How can people living with MS, and their families They will also be working to increase awareness and carers, get involved? of the NDIS and to assist people to understand Sign up to register your support for the NDIS at how the proposed scheme might meet www.everyaustraliancounts.com.au. You will receive their needs. a campaign update every few weeks and be invited Their roles are aimed at raising awareness of issues to campaign events. n that affect people with MS. “As the NDIS is developed and implemented, it will be important to ensure that the original intent of the scheme is maintained,” explains Tyrell. “In that way, it can also be an integral part of MS Australia – ACT/NSW/VIC’s ongoing mission ‘to minimise the impact’ of disability and chronic illness in people’s lives.” The Advocacy Coordinators will lead local advocacy campaigns to raise awareness of identified issues to complement the national advocacy program. Tyrell says, “My experience with MS over the past decade means I’ve been linked into the MS community in a variety of ways. These include peer-support groups, MS retreats, ‘maximising strength’ programs, physio–rehab units and Tysabri-infusion mornings!” “I was diagnosed with MS six years ago,” Julie adds. “Although all MS is different, I feel I can advocate for other people because I understand the issues they have experienced.” Julie and Tyrell urge people with MS and their families to get involved. “The Federal Government is running an engagement project to seek input from people with a disability, family members and carers, in the form of a survey,” Tyrell says. “There are also online ‘Your Say’ forums.”
To contribute to the survey, visit http://disabilitycareralliance.org.au/, and to voice your concerns at the ‘Your Say’ forums, go to
Thinkstock/iStockphoto/Jupiterimages/Getty Images http://yoursay.ndis.gov.au/
34 intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch 35 Go for Gold
2012 Go for Gold Scholarships Congratulations Since this program began, more than 500 scholarships have been awarded to people living with MS, throughout the ACT, NSW and Victoria, who wish to follow a dream to our winners in one of the categories of the arts, education, travel, employment, sport, and gym membership. To be eligible for a scholarship, you must be a registered client of MS Australia – ACT/NSW/VIC and have completed Holding on to your dream against the an application. For the date on which applications for the odds is worthy of reward. This year, the 2013 Go for Gold Scholarships open, please keep an eye Go for Gold Scholarships will be used to on the website: www.mssociety.org.au/go-for-gold.asp help more than 50 people living with MS To get involved in the 24 Hour Mega Swim, visit to achieve a long-held desire. www.megaswim.com And the winners are ... The Arts Adela Mackay, Vic Michele Vanderwert, Vic Susan Wilson, Vic Sean Cox, Vic Robert Hughes, Vic Gail Shell, Vic Christine Braby, Vic Lucy Frizzo, Vic Dianne Yoong, Vic Debs Wardrop, Vic Tracie Oldham, Vic Ben Lane, ACT Marice Gleeson, Vic Vennessa Marsh, ACT Con Verris, Vic Megan Ellis, NSW Maina Gordon, NSW Diane Groenewegen, NSW Maree Burrows, NSW Sandy Koutalis, NSW Karen Davies, NSW Anonymous, NSW Gai Helm, NSW Denise Lawrence, NSW Education Hannah Pickering, NSW Alex Sweatman, Vic Jill Scott, NSW Luise Topma, Vic Lauren Kish, ACT Deborah Vivian, Vic Jennifer Peet, ACT Jessica Gray, Vic Rhonda Clarke, Vic Employment Living the dream Anonymous, NSW Susan Lane, NSW In winning a Go for Gold Scholarship, Kerrie Robinson has Robyn Ashley, NSW Kerrie Newton, NSW changed how she thinks about herself. In 1988, when Kerrie, Jayne Bradley, NSW Anonymous, NSW who lives in Newcastle, NSW, was diagnosed with MS, she Alannah Krix, NSW Brendan Scott, NSW was a successful triathlete and marathon runner. After the George Saliba, NSW Shara, Vic diagnosis, she wasn’t deterred from continuing with the Craig Steinbeck, NSW Sophie Treloar, Vic sports, but a decade later, she was forced to stop. Anonymous, NSW To replace those activities, Kerrie took up pack hiking and Chelsea Thompson, NSW Sport bushwalking with her husband Graham, but due to the onset Wendy Frazier, NSW Colin Bramley, Vic of ‘foot drop’, she became at risk of tripping over. “Losing Anonymous, Vic that activity was probably the hardest thing to come to terms Travel Judith Collman, NSW with,” Kerrie says. “Over the previous 12 months, I’d seen Christopher Daley, Vic myself deteriorate faster than ever.” That’s when Kerrie applied David Sullivan, Vic Gym Membership for Go for Gold, her goal being to pack hike with Graham Steven Hathaway, Vic Diane Docherty, NSW through Tasmania’s Walls of Jerusalem National Park one Visit our website to read more about this year’s winners: last time. “It’s sentimental – the site of one of our first serious www.mssociety.org.au/go-for-gold.asp hiking trips and one of our favourite places in the world.” Kerrie knew she had to improve her coordination and fitness, so she hired a personal strength coach. On 22 April think, I’ll never be able to do anything like that again, I know 2012, Kerrie and Graham arrived at the Walls of Jerusalem that through the scholarship, MS Australia – ACT/NSW/VIC National Park. “I walked for eight and half hours.” The believes in me. I feel confident I can do something achievement was priceless. “MS tarnishes how you see like that again! It’s not over yet: the fat lady hasn’t even yourself. The scholarship has changed me. Rather than begun to sing.” n
36 intouch summer 2012 www.msaustralia.org.au/actnswvic Go for Gold
Here’s how previous winners have used Success stories Go for Gold to achieve their dreams:
Name: Irene Arnold Scholarship received: 2011 Category: The Arts I’m a teacher, and I’d dropped to four days a week at St Joseph’s Primary School before I was diagnosed with MS, in 1997. I live in Leeton, and I was also teaching the guitar and singing after school. Due to my MS, I now teach 3.5 days a fortnight and have reduced my private classes. The annual Leeton Eisteddfod is one of the most outstanding cultural events in western NSW. Many of my students enter, and they also sing at community functions. I used the scholarship to buy a bookcase so my music room would be easier to function in. I also bought music books and CDs, a new guitar, and an iPad and a speaker. The iPad allows me to record my students Name: Chrissy Gambino so they can hear how they play and sing. I can also record the backing music for Scholarship received: 2011 my singers and play it when they perform in public. I’m over the moon. This new Category: Education equipment has made me so much more efficient. Music has been marvellous I was 22 when I was diagnosed. I’d just therapy for me because it lifts my spirits when I’m down. I feel privileged to still be moved to Geelong with my husband, teaching, because it does the same for others. n and I was baking in my spare time. My Mum was a great baker, and as a teenager, I’d made special-occasion cakes for friends. During my twenties, I had MS relapses and my health was complicated by a heart problem. I could barely go to work, so I gave up my dream to have a little baking business. In 2010, I got my heart problem under control and my MS was quite good, so I started baking again and I haven’t stopped. I won’t give up my part-time job, because that’s my security, but I want to start my baking business. Huge thanks to Mega Swim! I applied for the scholarship to pay During its 12 years, the 24 Hour Mega Swim has raised more than $4 million. for a Pastry Chef at Home course at the The funds go to the Go for Gold Scholarships Program, Financial Assistance William Angliss Institute in Melbourne. Program and services that directly benefit people living with MS in NSW, I learnt so much. I also bought a ‘mix Victoria and the ACT. The events are also a unique opportunity for swimmers, master’ and food processor, and will be business operators and community groups to get involved. attending a small-business course. I’m To find out about upcoming 24 Hour Mega Swims or talk to us so excited. By Christmas, my business about running a Mega Swim at your local pool, visit www.megaswim. should be up and running. I’m very com, email [email protected] or call 1300 705 341.
Thinkstock/Jupiterimages/Getty Images grateful for the scholarship. n
www.msaustralia.org.au/actnswvic summer 2012 intouch 37 LIFESTYLE Gifts for you
Rewarding oneself during the festive season is just as important as giving gifts to friends and family.
This is no traditional gift list; it is a list of suggestions for For festivities boosting your health and happiness that you can give to l Take it easy Ask someone else to decorate the Christmas yourself. If you incorporate these gifts into your life, they will tree, buy labour-saving food such as a turkey roll rather reward you long after the festive season has ended. than a whole bird, go for frozen veggies and serve a microwavable Christmas pudding. l Phone an old friend It can be energising to reconnect l Keep it relaxed Friends are essential for your wellbeing. with someone you were fond of at school or enjoyed the Suggest you meet close to your home, or invite them company of in a previous job. over but minimise the work by serving deli-prepared l Tell people you love them Often we can neglect to let cheese platters. the people who are closest to us know how much we l Say no Be prepared to say no to requests. Use this appreciate them. Consider leaving a loving note where sensible strategy to prevent yourself from becoming they will find it. stressed and in turn having ‘cross words’ with people. l Spend time in nature Whether you take a chair into your garden or go to a park, try to hang out with the trees, birds Last, during the festive season, try to appreciate all and breezes for at least 30 minutes – you’ll feel better for it. that is good in your life – there is always something to be thankful for. n
Gifts you can request If someone asks you what gift you would like, consider requesting one (or all) of these: l A CD of relaxing music l A voucher for a massage or facial l A gift card for iTunes for Apple users so you can download apps or music l Walk for fun Don’t think of walking as exercise; just use l An e-reader or an Amazon Kindle. Many free the experience to take in the sights, smells and sounds. Be books are available for downloading, and some in the now, and appreciate what is around you. people find an e-reader easier to hold compared l Eat guilt free once a week During this blissful meal, with a heavy book pay no attention to anything but taste, and savour every l A gift pass to the movies, or tickets to a play delicious mouthful. or concert l Potter in the garden Treat yourself to some new ‘potted’ l A yoga mat colour, or pull out weeds and prune some shrubs – l A pedometer so you can monitor how much gardening is therapeutic. exercise you get in a day l Be kind to yourself Switch off the ‘self-criticism’ button l A course in which you can learn a new skill, such for at least an hour, a morning or a day – whatever you can as flower arranging or Asian cooking manage – and instead remind yourself of your strengths. l A Christmas food hamper so you can cut down l Find ‘soul’ food Do whatever you need to do to connect on food preparation with the ‘universe’ – pray, meditate, sing, listen to inspiring l A voucher for a manicure or pedicure (Note: music, or admire the beauty of a flower. Pedicures are also great for men.) l Dump your worries Just for today, forget about all the things that nag you; they’ll still be there tomorrow, but you can ignore them for 24 hours. l Opt for a healthy diet Adopt the mantra ‘If I don’t buy it, I can’t eat it,’ so you can put down the chocolate bar and pick up a carrot. l Promote optimism Having a positive frame of mind works wonders, so release the need to whinge, indulge in
negative self-talk or gossip. Thinkstock/Hemera/iStockphoto/
38 intouch summer 2012 www.msaustralia.org.au/actnswvic WHAT’S NEW: MS-RELATED RESOURCES Check out the latest resources, sourced by the MS Library.
E-books The MS Library has a small collection of e-books 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 Primary progressive It’s not all in your head: Personal insights and e-reader or a smartphone. multiple sclerosis: Anxiety, depression, tools for coping with MS As is the case with What you need to know mood swings, and lots of technology, multiple sclerosis US National MS Society By Holland, N., Burks, J. and Website: www.nationalmssociety.org not all e-books are Shneider, D. By Farrell, P. Search for ‘Learn Online’ (this webcast compatible with all DiaMedica Demos is in the Healthy Living section) e-readers. The e-books The focus of this book is on The author’s intention in This webcast is in four parts, we have purchased are the variety of physical and writing this book was to and at the beginning of each not compatible with emotional issues that people help people living with MS part, several people with MS Kindles and some other who have this type of MS to alleviate some of the talk about how they cope proprietary e-readers, but and their families experience. emotional symptoms related with the illness. Also in each they can be read on most The authors are experts and to the disease. The author part is an interview with a other e-readers and on include an MS nurse and starts with an introduction to health professional who talks computers, iPads and the Chief Medical Officer MS and goes on to discuss about coping techniques many smartphones. for the MS Association of the link between anxiety, and strategies. If you would like to America. They cover the depression and MS. Also The first part is about access our e-book nature of the disease and its included is information about the importance of having collection, please contact characteristics and stress the what people with MS can do support systems, and the MS Library. benefits of multidisciplinary to help themselves, including includes a discussion of management. They realised real-life examples of how the types of support that that although treatment people with MS cope with are available from family options for people with the emotional symptoms and friends and from other Relapsing–remitting MS associated with MS. people with MS, as well had expanded, the same Chapters include: as tips about where to find couldn’t be said for Primary • riding the rollercoaster of support in the community. progressive MS (PPMS) multiple sclerosis The focus of the second treatments. Consequently, • handling guilt and part is on the value of they have written the book maintaining resilience educating other people to help people with PPMS • maximising memory to about MS. It also includes maintain the highest possible combat depression tips for how newly diagnosed quality of life. • coping strategies for people can educate the The book is divided into every day. people around them. three parts: Appendices include a list The third part is about • Facts about PPMS of the names and websites asking for help and how • Maintaining and improving of organisations that produce difficult it can be but also health and function resources and the titles how crucial it is. • Quality of life, in that of books and articles that The last part is about happiness is a state of contain more information coping and how you can find mind, not of health. and are useful for people it beneficial to give yourself living with MS. time to adjust to change.
To borrow books or for assistance in accessing online resources, please contact the MS Library via MS Connect on 1800 042 138, or email [email protected]
PB intouch summer 2012 www.msaustralia.org.au/actnswvic www.msaustralia.org.au/actnswvic summer 2012 intouch 39 Help uS FundraiSe $850,000
Sunday 24 February, 2013 www.msmelbournecycle.org.au