The Official Magazine of MS Australia – ACT/NSW/VIC www.msaustralia.org.au/actnswvic
ISSN 1833-8941 Print Post Approved: Autumn 2012 PP 255003/08108
The Wellness Butt out: New research highlights risk for smokers Way Managing fatigue at work Take control with strategies to Be web wise: how to find maintain your health and wellbeing reliable information online
Kiss Goodbye 2012 Go for Gold to MS: Scholarships: Get involved throughout May Now open! www.facebook.com/MSAustralia http://twitter.com/MS_Australia www.youtube.com/MSSocietyAustralia
Co-editors: Toni Eatts and Rebecca Kenyon Publisher: Multiple Sclerosis Limited 12 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 Printing: Webstar Print
MS Australia – ACT/NSW/VIC
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ISSN: 1833-8941
Disclaimer: Information and articles contained in Intouch are intended to provide useful and accurate information of a general nature for the reader but are not intended to be a substitute for legal or medical advice. Multiple Sclerosis Limited is not recommending medical or legal advice and readers must seek their own medical 34 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 36 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. 30 © Multiple Sclerosis Limited 2012
2 intouch autumn 2012 www.msaustralia.org.au/actnswvic Contents CEO’s Message
FEATURES Welcome to the Autumn edition of Intouch. I hope 10 My Story: A Turkish Delight you have had a positive start to 2012. Cigdem La Salle believes living Here at MS Australia – ACT/NSW/VIC we are well with MS is possible looking forward to a productive year ahead. After twelve months as acting CEO, it gives 12 Cover Story: The Wellness Way me great pleasure to introduce our new CEO, How to adopt a wellness approach Jim Carroll. Having just taken up the position as we went to print, to life that has you in the driver’s Jim comes to us with experience in the commercial, public and seat. Read our practical advice and case studies, and find out how we not-for-profit sectors. Most recently, he was the Head of News and can support you through it Public Affairs at Network Ten. One of Jim’s first priorities will be to work with our MS Australia colleagues to influence the development 18 Kiss Goodbye to MS 2012 of the National Disability Insurance Scheme, ensuring that the new Get involved in this year’s campaign system benefits people with MS and their families. You will hear to ‘Kiss Goodbye to MS’ more from Jim in future editions of Intouch. We are currently gearing up for this year’s Kiss Goodbye to MS COMMUNITY MS (KGTMS) campaign which will run throughout the month of 23 Families and Carers: May. Local and national initiatives will bring attention to the issues Foster friendships with fellow carers surrounding MS and how we, as an organisation, are supporting 24 Tribute to Katie Booth: people living with MS. Highlights of the campaign include World MS A spirited campaigner Day on Wednesday 30 May and the MS Walk and Fun Runs taking 25 Community Fundraising: place in Sydney, Melbourne and Canberra on Sunday 3 June. Thank you for your hard work Accessible for people of all ages and abilities, we encourage you to 26 Volunteers in Action: get involved. Have fun while helping to raise awareness and much- Meet those helping to needed funds for MS. Read more about these activities and how to make a difference get involved on page 18. 28 Peer Support: This issue also features a great deal of practical tips and How ‘giving’ can have strategies on how to ‘live well’ with MS. Professional advice far-reaching benefits and personal stories from others living with MS help provide the 29 Support Group Profile: information and motivation you need to focus on your health and St Kilda Peer Support Group quality of life. 30 MS Ambassador Profile: Finally, it is with great sadness that we recently heard of Meet Amanda Campbell the passing of Dr Peter Colville, who was instrumental in the establishment of the MS Society in Victoria. Dr Colville’s leadership was crucial in the development of MSVIC’s practical, evidence- HEALTH & WELLNESS based services and his philosophy and attitude towards providing 31 Take Charge of Your Health: useful improvements in quality of life prevails. We honour Dr Colville Finding reliable information online in this issue of Intouch (page 8) and also acknowledge the great 32 Spotlight On: contributions of two very proactive people with MS who sadly Social workers and community passed from cancer late last year – Katie Booth (page 24) and support workers John Blades (page 36). All have left an impressive mark on the MS 34 Feature: Time to quit community. We send our deepest sympathies to their families. The facts about smoking and MS I hope you enjoy reading this issue of Intouch.
LIFESTYLE 36 The man who put MS on the ‘back-burner’: Ken Sharpe We remember the remarkable life and achievements of John Blades, Acting CEO, MS Australia – ACT/NSW/VIC and highlight the advice he so often gave to others living with MS
REGULARS Look out for this symbol 5 Your Say for information and articles 6 News specifically relevant to family 11 Q&A 20 Events members and carers of people with MS. 22 MS Readathon CARERS 39 New Resources
www.msaustralia.org.au/actnswvic autumn 2012 intouch 3 Editor’s Note Welcome to the first edition ofIntouch for 2012! I hope you had a wonderful festive season. When I look back at the year gone by, it’s hard to believe that it’s been 12 months since I was sitting in the Editor’s chair, writing this same letter for our Autumn 2011 edition. Back then, I was a different person; back then I wasn’t a mum! I have since been blessed with a beautiful, healthy baby boy, who brings endless joy to our lives and, of course, the odd sleepless night. Last year, I read every book, magazine and website possible to prepare for motherhood. What I learnt is that there is no rule book; you can never be 100 per cent perfectly prepared. But, knowledge is power, so the research was definitely worthwhile. What I also learnt is that I am so much more resilient and adaptable than I ever thought possible. As a new parent, I am in a constant state of change – just when I think I’ve figured things out, a curve ball comes my way. Most importantly, however, while learning to look after another little human being, I had to learn to look after myself – eat well, rest when I could, exercise, take some time out for ‘me’ and accept help. Sure, I don’t always do so well at these things but when I make them a priority, I’ve realised that ‘living well’ benefits my family as well as myself, and everything falls into place that little bit easier. This issue we focus on just that – wellness! Why and how your attitude and actions towards living well can contribute significantly to maximising your health and quality of life. Through practical tips and case studies, we’ve highlighted how, with the right information, tools and support, you can adopt a wellness approach to life that has you in the driver’s seat. I would like to take this opportunity to thank Toni Eatts for keeping my seat warm while I was on maternity leave. I’m sure you would agree she has done a fantastic job of keeping you well informed throughout 2011. Toni has also been heavily involved in putting this latest issue together. Thank you Toni! Remember, we love your feedback and tips, so keep them coming. Email me at [email protected]
Rebecca Kenyon Editor
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Win an Alfa Romeo or a luxury holiday!
Win first prize in our latest Art Union and you can choose between driving away in a new Alfa Romeo Giulietta, valued at $44,000, or taking a 25-day luxury tour and cruise around Canada and Alaska. Join Club MS to enter our exclusive draw to win 2oz of GOLD BULLION The odds of winning are brilliant and tickets start for as little as $15. Buy yours and help MS Australia provide vital support and services to people living with MS!
The competition is drawn on 30 March Giving Life Back
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4 intouch autumn 2012 www.msaustralia.org.au/actnswvic 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
www.msaustralia.org.au/actnswvic
The Official Magazine of MS Australia – ACT/NSW/VIC The Official Magazine of MS Australia – ACT/NSW/VIC www.msaustralia.org.au/actnswvic a trip of this nature, I would have laughed at them. However, two things in my life changed – a new medication that does
Spring 2011
ISSN 1833-8941 ISSN 1833-8941 Print Post Approved: Print Post Approved: PP 255003/08108 not require refrigeration and the purchase of a mobility PP 255003/08108 Summer 2011 scooter which is so compact and lightweight I am able to Fight festive fatigue
Improve your sleep Clothing options to help you stay cool use it just about everywhere I go. Travel Sexuality and people with disabilities Healthy Christmas tips and MS Back care for carers My biggest drawback to travel in the past has always Options, personal stories and tips for your next holiday been getting around airports. However, I was able to use this scooter to the door of the aircraft. The airline staff then Ageing removed it and had it waiting for me at the aircraft door after and MS Our Love Story: Planning ahead and we landed. the A-Z of health MS Awareness A couple reveal how MS Week Highlights: See page 22 brought them togetherSpotlight on our services: All our activities See page 32 2011 Go for Gold: What we offer I carried the lithium ion battery onboard with me in a See page 18 for a list of the lucky winners special bag and the scooter either remained upright, or Praise for MS nurse was folded up and taken to the hold. Some airlines took I am in awe of Helen Sikkens, our MS community nurse who a little bit of convincing but in most cases I did not works out of Coffs Harbour. She is a saint. I was diagnosed experience any difficulties. with primary progressive MS just over 12 months ago, and I S. Gigliotti, via email seemed to blindly struggle through all the pitfalls (and there were a few). Then my doctor placed me on a medication Tip for stairs that required injections every second day. That’s how I met Recently I discovered a simple technique to help with stairs. Helen. She took me under her wing and taught my husband, My right leg won’t lift high enough to clear a step so I tried Dave, and I how to do the injections. hooking my yoga strap under my foot and pulling my leg up She also listened to my frustrations about losing my job to the next step. A friend with MS who has a similar problem and not having a lot of money for certain things. As a result, couldn’t believe something so simple could work so well. she helped me apply for some government funding so that Now, I don’t go anywhere without a strap in my handbag. I can get what I need and she organised a medical alert call I recently forgot to take it so I turned my handbag upside button so Dave could go out without worrying that I would down and used the long handles as a strap. I’m delighted to fall and not be able to get help. Helen also saw the need for report it worked perfectly! a support group in Grafton so she started one. Helen, you I hope this helps others as it’s been a life-changer for me! are our guardian angel. Thank you! K. Newton, via email Lisa, Grafton NSW Back in the bush After many years in a wheelchair I am finally able to go out hiking again! The TrailRider is a cross between a sedan Write in to WIN! chair and a wheelbarrow, that allows me – with a number of helpers or ‘sherpas’ – to head out onto rough hiking trails. Keep your feedback coming in. Parks Victoria is trialling two of these Canadian chairs at the Next issue’s theme will focus on Grampians and Wilsons Prom parks. There is no charge to ‘Technology to stay connected’. take one out for the day. The sherpas do not actually carry the rider. The rider’s weight is borne by the single wheelbarrow-style wheel. The sherpas, behind me and in front of me, keep the chair upright and ease the single wheel over obstacles on the trail. I am excited to be able to get out into the wilderness again and look forward to TrailRiders being available throughout Australia. D. Stratton, via email Love my scooter My husband and I have just returned after a four-month trip Each reader to have their letter published will win an around the world and I have finally caught up with my Spring Intouch with the feature on travelling with MS. Very timely! organic tea and chocolate I have secondary progressive MS (diagnosed in 1989) indulgence pack. and a year ago if anyone had told me I would be undertaking
www.msaustralia.org.au/actnswvic autumn 2012 intouch 5 NEWS Sydney’s first MS Community Shop
Following the opening of our first MS Community Shop in NSW, Ara Levonian, Retail Operations Manager, MS Australia – ACT/NSW/VIC, is pleased to report that the first few months of trade have been promising. The shop was officially opened on 16 December by David Elliott, the Member for Baulkham Hills. However, it has been unofficially open for trade since 28 November 2011. “It takes a while to establish a shop in a community and to settle the volunteers into their roles,” explains Ara. “We need to check the type of stock we require and whether we have the correct opening hours. We also need to build our links to the local community and get to know our customers. Open for business (L to R): Ken Sharpe, Acting CEO, MS Australia ACT/NSW/ However, so far we are pleased with how it is going.” VIC; Michelle Byrne, Hills Shire Deputy Mayor; Stephen Papadopoulos, MS The local community in Sydney’s Hills District has been Ambassador; and David Elliott, Member for Baulkham Hills. generous in its donation of clothes and other items, says Ara, with the shop now offering a good range of stock. Visit our new store at 22 Old Northern Rd, Baulkham Hills, All funds raised go directly to assist people living with the or if you would like to volunteer, call MS Connect on unpredictable effects of MS. 1800 042 138. n
MS in the media
l Teacher and musician Karen Law speaks about her experiences and life with MS in a three-part series, ‘A Sprinkle of Hope’, on the Life Matters segment on Radio National. Listen to the program online at www.abc.net. au/radionational/programs/lifematters/a-sprinkle-of- hope/3759878 Go for Gold Scholarships: l On Australia Day, 2011 Australian of the Year Simon Applications open now! McKeon (and person with MS) discussed the critical role the not-for-profit sector plays in Australia, as well as the If you’re interested in applying for a Go for Gold Productivity Commission report on the disability sector, in Scholarship, now is the time to download an an article published in The Age. View his article online at application form. www.theage.com.au/national/year-of-showing-that-by- Scholarships are awarded to people with MS giving-we-receive-20120125-1qhwo.html n thanks to the generous support of the 24 Hour Mega Swim program. We encourage all people with MS in the ACT, NSW and Victoria to apply. For more information about the scholarships, or to download an application form, visit New regional office www.mssociety.org.au/go-for-gold.asp or call 1800 042 138. locations – NSW Meanwhile, in the Summer 2011 issue of Please note, these regional offices of Intouch, some of the 2011 Go for Gold Scholarship MS Australia – ACT/NSW/VIC have moved: winners from the Central Region were omitted. We Central Coast: Suite 4, Unit 3a, 154 Pacific congratulate the following winners: Highway (PO Box 3179), Tuggerah 2259 Music: Irene Arnold, NSW Coffs Harbour: Suite 606, 24 Moonee St, Travel: Janette Turner, NSW (PO Box 93), Coffs Harbour 2450 and Tony Maruskanic, NSW Wagga Wagga: Suite 18, Business Enterprise The Arts: Lynette Brideson, Beth Wurcker and Centre, 66-70 Coleman Street, Wagga Wagga 2650 Lynnette Dickinson, all from the ACT To be directed to staff in these offices, please call Sport: Bruce Wharrie, NSW MS Connect on 1800 042 138. thinkstock/istockphoto
6 intouch autumn 2012 www.msaustralia.org.au/actnswvic News from MSAC
By Andrew White, Chair of the MS Advisory Council
As we head into a new year, I am provided with a valuable opportunity to pause and reflect on the year gone by and the one that is ahead of us. Looking back, MS affected me in many ways last year – some positive and some not so. Leading MSAC, meeting people affected by MS, a new treatment, working flexibly with the great support of my employer, and my improved wellness regime all highlighted the ‘up’ side of living with MS. However a relapse, time in hospital and driving restrictions combined to challenge 2011 John Studdy Award me during the year. Professor William ‘Bill’ Carroll (pictured above) was The MSAC team is also taking time to reflect honoured late last year with the 2011 John Studdy Award. on our achievements last year and our plans for the This annual award recognises an individual’s outstanding, year ahead. consistent and selfless service to people with MS. On behalf of the wider MS community, we completed An eminent neurologist, Professor Carroll has served on two projects last year and provided feedback to the the Board of the MS Society of Western Australia since 1996. Board and leadership of MS Australia – ACT/NSW/VIC, He is also considered a world expert and an advocate for to help them form the future direction of the people with MS. organisation. We also spoke with people from our As part of his role on the Board, Professor Carroll served community, staff from within the organisation itself and as Chair for the World Neurology Conference that saw representatives from the academic/research field. All of these interactions have assisted to enhance our more than 5,000 international specialists and scientists visit understanding of the challenges and opportunities for Australia in 2005. those affected by MS. Since then Professor Carroll has been instrumental in During 2012 we have two key objectives: to expand establishing the Pan-Asian Committee for Treatment and the reach of MSAC in the ACT and NSW through the Research in Multiple Sclerosis (PACTRIMS). The committee establishment of Council membership in those regions; has been crucial in addressing the spread of MS throughout and to conduct a greater number of projects. Work has Asia and its unique nature. PACTRIMS has held annual already commenced in relation to both of these activities conferences since 2008 and these have gathered strength. and a project related to carers and respite will soon Professor Carroll joined the Board of Multiple Sclerosis commence. We hope you will participate. Australia in 2000 and has been contributing significantly While ideas are brewing for a number of other to the Board’s ability to deal with the clinical and medical projects, we would really appreciate hearing from you research issues that arise. in regards to issues that you believe MSAC should He has also made a significant contribution in promoting consider in 2012. Please head to the MSAC Facebook the idea, and subsequently helping to establish, Multiple page or contact us on the details below. Sclerosis Research Australia (MSRA). He was a Foundation Keep well and have a great 2012. Board member of MSRA (from 2004) and remains a valued member today. Professor Carroll has worked in several other capacities with MSRA, such as championing the Australian MS Longitudinal Study, the MSRA Brain Bank, the Clinical Trials Network and the concept of Platform projects that have all significantly benefited MS research in Australia. “For all of these achievements and for Professor Carroll’s own exceptional clinical support for people with MS, he was Email: [email protected] most definitely the inspired choice for 2011,” John Studdy Telephone: 03 9845 2794 said of the award. n www.msaustralia.org.au/actnswvic autumn 2012 intouch 7 NEWS A contribution to remember Dr Peter Colville AM was instrumental in the establishment of the MS Society in Victoria. Here he is remembered by Dr Elizabeth McDonald, Medical Director, MS Australia – ACT/ NSW/VIC, who had the privilege of working with him.
It is with great fondness and respect that I recall the contributions of Dr Peter Colville who passed away in late November, 2011. Dr Colville’s leadership was crucial in the development of MSVIC’s practical, evidence- based services, and his philosophy and attitude towards providing useful improvements in quality of life prevails. Dr Colville graduated from Melbourne University in 1948 and very early in his medical career became involved in rehabilitation. As a pioneer of rehabilitation services in Australia, Dr Colville was a Founding Fellow of what is now the Australasian College of Rehabilitation Medicine, and was President of the Australian Association of Physical and Rehabilitation Medicine, which has now dissolved. Initially Dr Colville worked in the field of paediatrics through the Royal Children’s Hospital and the polio aftercare service of the Victorian Health Department. In the early 1950s, he spent six months in America studying the respiratory aspects of poliomyelitis. Dr Colville’s learnings were translated to treat and manage patients at Fairfield Infectious Diseases Hospital where he worked between 1951 and 1995. Dr Colville was also involved with the Victorian Society for Crippled Children, Yooralla and the Spastic Children’s Societies and in private practice. With the establishment of the MS Society of Victoria, Dr Colville became an honorary medical advisor, subsequently becoming part-time Medical Director and neuropsychological research and this became a joint Chief Executive in 1975. forerunner of the international recognition of the cognitive The first MS Centre in Victoria opened in 1974, effects of MS. purpose-built to provide community rehabilitation and The plight of younger, more severely disabled people day care, concentrating on physical therapy. Dr Colville was of major concern to Dr Colville. Through his efforts, insisted that services offered at the centre were not only a pilot project was undertaken using carers to assist for people with MS but also for those with other chronic those dependently disabled to remain at home. This neurological conditions for whom no alternative services was successful and the forerunner to the personal care were available. attendant programs now nationally accepted. Dr Colville was a leader in multidisciplinary team work Dr Colville became internationally recognised as a and led by example. He promoted practical services, leader in MS management. His philosophy, teachings looking for solutions to the problems of progressive and practice have served as the basis of community disability – physical, psychological and socioeconomic. rehabilitation to this day. Always challenging the dogma of the time, Dr Colville was awarded the Member of the Order of Dr Colville undertook and promoted basic research Australia in 1990 in recognition of service to medicine, into the symptoms of MS. He established that the initial particularly in the field of rehabilitation and severe primary focus of physiotherapy had neglected other disability management. important areas of need for people with MS. A urological In early 2011, he became the worthy recipient consultative service was set up, a handyman employed of the college medal of the Australasian Faculty of for home modifications and financial assistance, and Rehabilitation Medicine. He has left an impressive advice was available when needed. Dr Colville initiated mark on the MS community. n
8 intouch autumn 2012 www.msaustralia.org.au/actnswvic NEWS: ADVOCACY
Stem-cell forum featured at ALP conference The Coalition for the Advancement of Medical Research in Australia (CAMRA), in conjunction with MS Australia, presented a forum on stem cell tourism as part of the fringe program at the ALP National Conference held in December. Senator Kate Lundy facilitated the event, with a high quality panel that included Professor John Rasko from the University of NSW, a spinal cord injury advocate Alan ‘Hammer’ Bloore, and Jackie Kay, who has MS and has had stem cell treatment overseas. Holding the forum in conjunction with the ALP National Conference was
From L to R: Jackie Kay, AO (person with significant in ensuring that politicians in attendance keep the issue of stem cell MS); Professor John Rasko, University of research front of mind. SBS Radio produced a feature on the issues raised in the NSW; Senator Kate Lundy; Alan ‘Hammer’ Bloore; Tammy Gardner, CEO Huntington’s forum which can be viewed at www.sbs.com.au/podcasts/Podcasts/radionews/ Victoria; Alan Blackwood, Manager Policy and Community Partnerships, MS Australia; Joanna episode/195385/Stemcell-tourism-alarm Knott, Chair, Spinal Cure Australia and founder CAMRA is a group of consumer organisations brought together in 2008 for the of CAMRA; friend of Joanna’s. review of the Lockhart stem cell research legislation. n
Advocate contributes to Consumers’ Health Forum Robert Pask, Coordinator of the National MS Advocates Program, was asked to contribute a piece to Health Voices, the journal of the Consumers’ Health Forum of Australia. His article discusses consumer participation in health policy and can be read at www.chf.org.au/pdfs/chf/ HV-OCT2011_Pask.pdf
MS Australia launches keeping NDIS update cool campaign in ACT The Prime Minister has announced a further $10m The NSW and Victorian governments both provide electricity toward the development process that will establish concessions to people with MS on low incomes who need to the National Disability Insurance Scheme (NDIS). keep cool. In January, MS Australia launched a campaign to The announcement was made at the ALP National advocate for a similar electricity concession for people on low Conference late last year as part of a motion to make incomes who live in the ACT. A submission has been made the NDIS a part of the Labor platform. Also in the to the ACT Treasurer proposing a $100 annual concession, announcement was a commitment to establish a central and meetings with relevant ministers and other relevant agency to oversee the scheme. The planning for this parties are being organised. The ACT Government is also will proceed in the first half of 2012, and the agency is in the process of reviewing its entire concession structure expected to be announced in the 2012/13 budget. and has appointed an expert panel to develop a Targeted How this money will be spent is still unclear but Assistance Strategy. MS Australia has made a submission a number of working parties and projects will be to the panel and is expecting to meet with its members in established in 2012 to report to the Council of February. Copies of our Treasury submission and Australian Governments (COAG) Select Committee discussion paper for an ACT Medical Cooling Concession and the NDIS Advisory Committee. n can be found on the ‘Advocacy’ pages of our website at
thinkstock/istockphoto www.mssociety.org.au/media-advocacy.asp n
www.msaustralia.org.au/actnswvic autumn 2012 intouch 9 My Story: A Turkish Delight
Cigdem La Salle believes in living well with MS. This positive 46-year-old shares her intriguing story with Rebecca Kenyon.
Turkish born and raised, Cigdem yoga and now she leads a class. [pronounced Cheedum] La Salle “I often say, ‘my body is like a car graduated from university as a – I need to keep oiling it by doing chemical engineer and worked in exercise’.” Turkey for a year before moving to Since 2009, Cigdem has been London to learn English. A three- relapse-free on Natalizumab (Tysabri), month trip turned into 12 years, but is careful to also monitor her diet, during which Cigdem acquired her vitamin D and iron levels, which can Masters in Engineering, married also affect her fatigue. an American scientist and had two children. “And I’m still learning Passion for the cause English,” she laughs. Raising awareness and supporting In 2000, Cigdem’s husband the MS cause has become important was offered a job in Canberra and to Cigdem. In 2007, Cigdem asked the family migrated to Australia. her son’s music and piano mentor Cigdem soon secured a position (who is well regarded in the musical in occupational health and safety community) if he would arrange a Cigdem La Salle enjoys (chemical safety). quality time with her concert to help raise money for MS Soon after, she began experiencing sons, Sam (left) and Alex. Australia. He happily agreed but numbness down her left side which Cigdem had to find a venue, organise she ignored until fatigue and speech commitments and he would stop the catering, logistics and, of course, difficulties followed. A GP referred travelling so much for work. gather the audience. Cigdem to a neurologist but before “Once I did stop work, I went into Cigdem recruited her neighbour her appointment day, she woke a deep depression,” admits Cigdem. to help and tapped into her social one night and was unable to see. “I couldn’t get out of bed because networks to stage a successful “I was officially worried,” she says. there was no reason to.” However, fundraising concert at the Turkish Cigdem saw her neurologist, was thanks to some determined friends Embassy. Even Cigdem’s 13-year-old sent for an MRI and, in 2005, MS and support from MS Australia – ACT/ son joined the performers. The event was confirmed. NSW/VIC, she began to see that, with received coverage in the Canberra “I didn’t really know what MS was the right attitude, support and a few Times and raised around $10,000 for so I ignored it and got on with life,” lifestyle adjustments, she could still MS Australia – ACT/NSW/VIC. Four she admits. “I felt almost normal live a fulfilling life. years later, that event has grown to again but the fatigue remained Over the years, Cigdem has become the esteemed annual Opera and my speech and memory were tried the various immunotherapy by Candlelight concert, for which our increasingly affected.” treatments but due to the severe side- organisation is the charity of choice effects she has found complementary (see page 25 for more information Accepting change therapies, such as naturopathy and about this event). Cigdem’s MS rollercoaster worsened acupuncture, suit her better. She also Cigdem also volunteers regularly at over the following year when two enjoys a monthly massage at the the MS Centre in Canberra. Coming MS relapses landed her in hospital. MS Centre (Gloria McKerrow House) from a culturally diverse background, However, the relapses left some in Canberra. without the support of extended family permanent symptoms, making it In addition, Cigdem joined an MS here in Australia, Cigdem has created increasingly difficult for Cigdem support group as well as the Women’s her own family and support network to balance her commitments. “In International Club in Canberra which and feels she gets back just as much June 2006 I stopped work and supports the diplomatic community as she gives to others. “It lifts me my husband and I agreed that we when they arrive to the Capital. up and makes me feel good about would adjust some of our financial Through the group, Cigdem started myself,” she says.” n
Would you like to share your story with other people living with MS? Contact the editor on (02) 9646 0725 or email [email protected]
10 intouch autumn 2012 www.msaustralia.org.au/actnswvic 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.
l Negotiate a schedule that suits your needs such as working part-time, shorter days or from home. l Set up your environment at work to minimise fatigue. Arrange frequently-used items within a semi-circle for easy reach. Establish a work surface at the correct height for each task, with a comfortable chair and foot support. Consider equipment that may assist you in the workplace (e.g. a bigger computer screen, on-screen “I’m feeling stressed at work keyboard, or a mouse to replace a keyboard). l Make sure you have adequate lighting and and my fatigue is getting ventilation, and wear comfortable clothing. worse. Should I resign?” l Sit whenever possible. Ensure that you maintain good posture as you work and change your position regularly. Giving up work is a big decision and not one you l Every half hour, get up, stretch and walk a should make in haste. Give yourself some time – few steps. take leave if possible as this will give you a chance l Whenever possible, use both hands to work in to see if your symptoms improve or stabilise. opposite and symmetrical motions. Smooth, If you haven’t already done so, it might be time flowing motions use less energy than swift, jerky for a medical review. There may be ways to treat motions. Music can be a good pacesetter. or manage your symptoms. MS-related fatigue l Slide objects rather than lifting and carrying can be severe, frequent and incredibly frustrating, them. Use a wheeled trolley or table when work especially in the workplace. Fatigue is a hidden surfaces are not continuous. symptom and other people may not understand l If you have to work outside in the warmer why you are not performing as you used to, or why months, trial a cooling vest or necktie, or plan to it might take longer for you to complete a task. work outside in the coolest part of the day. Unfortunately, there is no cure for MS-related l Keep up your fluid intake. fatigue. However, it can be managed, allowing you to conserve energy for activities that are important. Employers are required to make reasonable There may be lifestyle factors contributing to adjustments to accommodate employees with your fatigue that you can change. Consider, for disabilities. There may be funding available to example, improving your diet, increasing your assist with these changes through the federal fitness, increasing the amount of sleep you get, government’s Employment Assistance Fund. This actively managing depression and stress, and fund can be accessed via employment service reducing your exposure to heat. Also consider providers, such as MS Australia – ACT/NSW/VIC establishing a network of emotional support and in Victoria. Visit http://jobaccess.gov.au or call ask your GP or neurologist about medication that MS Connect on 1800 042 138 to find a provider may help you manage the effects of fatigue. near you. There may also be assistance available through the Commonwealth Rehabilitation Service. More specifically, here are some tips from our Call 1800 277 277 or visit www.crsaustralia.gov.au occupational therapists on managing your Finally, before making any drastic decisions, get fatigue at work: some financial advice. You may have taken out l Use a diary or calendar to plan your day. income protection insurance or you may even have l Do the most difficult jobs early in the day – but insurance as part of your superannuation fund. not all at once. Depending on the details of your cover, there might l Schedule rest periods. Can you negotiate rest be significant financial implications depending breaks with your employer? Let them know you on whether you cease work immediately or you will complete the work even though you need to reduce your hours and cease work later. pace yourself differently. If they are reluctant to For further information or advice regarding allow this, slow your pace for 10 minutes out of fatigue management, please contact MS Connect n thinkstock/Jupiterimages/Comstock every hour. on 1800 042 138.
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The Wellness Way
Living with a chronic illness involves making choices to manage your condition and to maximise your health and quality of life. Here, we put you in the driver’s seat on the road to ‘wellness’ and explain how, with the right information, tools and support, you can live well with MS.
Living with the symptoms of MS, along with the physical, centre of all actions and reactions that determine your health mental and emotional impact of the disease is nothing new and wellbeing within a supportive environment. ‘Supported for a person with MS – you do it every day. But, are you living self-management’ involves identifying and establishing a ‘well’ or are you just coping? network of support that includes family, friends, doctors, When you’re living with MS it can often feel like the disease health professionals, local healthcare agencies, is controlling you and/or that decisions are constantly being MS Australia – ACT/NSW/VIC, and other community services made for you in regards to treatment, how you will manage and supports – all working together to assist you to develop a symptoms and maintain your quality of life. However, being an plan of care that suits you. informed, active participant in your healthcare plan can help The very nature of a long-term progressive disease such you to maximise your health and overall sense of wellbeing. as MS is that the journey is different for each individual, family This is known as chronic disease self-management, and it member or carer living with the disease. Not only does the aims to put you – the person living with MS – at the centre of type of MS and its symptoms and severity vary, but a the picture with regard to managing your disease. person’s age, gender, cultural background, family history, ‘Self-management’ may sound like an isolating, text-book living arrangements, and so on are also important factors. term that implies that you need to go it alone and make all the As such, the degree to which an individual and their family
decisions yourself. In actual fact, it is about you being at the can self-manage will vary. Thinkstock/iStockphoto/
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Principles of self-management The diagram below shows how an individual affected by MS collaboration between these networks will vary, based on can manage their condition and overall wellbeing through the amount of support required to maintain an individual’s ‘supported self-management’. Working from the centre of the health and wellbeing. diagram outwards, it highlights how: l The outer ring refers to principles of self-management l The individual living with MS is at the centre because and activities that will allow the person with MS to they are the person who lives with the disease each day. maintain control, such as good communication, sharing of They are the experts in the management of their health in information to support decision-making, and achieving the partnership with health and non-health professionals. best health and wellbeing outcomes possible. l The pyramid refers to the intensity of support required by the person self-managing as their health needs change Take action and/or increase. The intensity of support required will Having a positive, proactive attitude towards your health vary depending on a person’s circumstances, needs and wellbeing is crucial. Managing your MS involves more and requirements. than visiting your doctors, having medical tests and taking l The inner circle shows the supports and services that may medication. While these are important, so too is ensuring that be part of a person’s network. The level of participation and ‘all’ areas of your life are given the care and attention they
Information
Integrated Community services service providers Local acute hospital Coordination
MS services
Community health centre
Leisure centre Collaboration Person / family-centred Control
Primary healthcare team Family and friends
Choice Local government services Pharmacy Specialist Partnership Working clinician (e.g. with strengths neurologist)
Responsiveness Holistic approach
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need for you to achieve overall wellbeing. Consider Based on the ‘ESSENTIALS’ of living well with MS, how wellness as: do you support yourself to maintain physical, emotional/ l A way of life – that you design yourself to help you reach psychological, social and spiritual wellbeing? Who else is your highest potential for wellbeing. involved in helping you achieve that? Grab a notebook and l A choice – a decision or a personal commitment you make copy the table below. Think about where there may be towards optimal health. some gaps in your wellbeing and who, within your support l An ongoing process – that you work on every day. network, can help you to fill those. This can assist you to think l A positive acceptance of yourself. holistically about your wellbeing and to be proactive about l An interaction of the body, mind and spirit – the incorporating healthy lifestyle choices early. appreciation that everything you do, think, feel and believe has an impact on your state of health. PHYSICAL SOCIAL l A lifestyle built around the six dimensions of health – physical, emotional/psychological, spiritual, occupational/ financial, social and intellectual health – which complement SPIRITUAL EMOTIONAL/ and interact with each other. PSYCHOLOGICAL
With this in mind, use the ‘ESSENTIALS’ to help guide you through a balanced approach to living well with MS that takes INTELLECTUAL OCCUPATIONAL/ into account all areas of your life: FINANCIAL
Exercise – do something to increase Throughout this article we have highlighted some personal E your fitness, strength and activity levels stories shared by people living with MS who are actively incorporating a ‘wellness’ approach to their lives in various ways. Take note and be inspired to consider how you, too, Social and family connections – can begin (or continue) to live well with MS. S seek out a supportive environment Overall, it is important to remember that accepting responsibility for managing your MS and overall quality of life Stress and depression management – look for does not mean going it alone. The idea is to work together S ways to bring a sense of calm to your life with a team – your support network – to decide how to achieve the best health and wellbeing outcomes for you.
Employment/occupation – either How we can help you paid or voluntary, get involved E On your road to wellness, MS Australia – ACT/NSW/VIC can be one of your strongest support crew. Our organisation Nutrition and complementary health works with clients and their significant others to assist you N – eat a healthy and well-balanced diet to live well with MS. Through a range of services, programs and resources, MS Australia – ACT/NSW/VIC provides practical, relevant and flexible services to meet the needs of Timely medication and symptom our clients. management – seek help and ask for advice T The role that our organisation plays in self-management includes support for individuals affected by MS, their families Intimacy and sexuality – address any and carers through the provision of information, health I challenges that may exist in this area promotion, education, assessment, case management, coordination and assistance to negotiate and navigate the interventions, supports and services available. We also work Accessing psychological and physical support from your network with clients, supporting individuals and their families along A their journey with the disease to manage the impact on their lives and to learn to adjust to change. Learning about MS – increase Using the ‘ESSENTIALS’ of living well with MS, we have L knowledge and personal growth summarised how MS Australia – ACT/NSW/VIC can support you on your road to wellness. For more information Spirituality – looking for and finding about any of these services or programs, please visit hope and meaning www.msaustralia.org.au/actnswvic or call MS Connect S on 1800 042 138.
14 intouch autumn 2012 www.msaustralia.org.au/actnswvic Name: Phillip Smith Age: 66 Lives: Dalmeny, NSW Diagnosed with MS: 1990
Fighting fit When Phillip Smith encountered his first MS symptom Exercise or physical activity he was only 24 and a self-confessed sports ‘nut’. He l Along with exercise therapists in the community, we played rugby and regularly jogged. But as many people currently operate more than 75 physical activity groups with MS know, you can recover from an exacerbation across the ACT, NSW and Victoria. without realising you have the disease so it wasn’t until l Our physiotherapy team provides physical assessment, 20 years later that Phillip was told he had secondary education and therapy to clients, and work with our progressive MS. By then he was a keen golfer and other health professionals to identify the most suitable jogged 3km each day before heading to work. Today exercise regime for clients. he uses a scooter but that doesn’t prevent him from l Our Wellness Days promote the benefits of physical keeping up his fitness regime. activities, such as Heartmoves for MS, yoga, tai chi, and “Exercise is essential,” he says. “The more you can stretch and strength exercises. do the better you feel and the better you feel, the better l We hold a number of major events that combine fun, you are able to cope with your MS.” fitness and fundraising, including the MS Walk and Fun Phillip begins each morning with stretches and then Run, The Gong Ride, MS Melbourne Cycle and the lifts small weights to maintain the strength in his arms. 24 Hour Mega Swim program. All people with MS are Twice a week his wife, Robyn, drives him to the local encouraged to get involved! gym where his personal trainer, Jamie Costin, collects him in a wheelchair and takes him inside. “Jamie has quite a few clients with MS and it’s wonderful to have his support,” says Phillip. Jamie directs Phillip through an hour-long session which includes 10 minutes on the exercise bike, three minutes on the walking machine, floor exercises and weight training. While Phillip enjoys the physical workout, he also relishes the outing. “It’s easy to feel isolated so it’s great to see people and have a talk.” His gym time is so important to his overall sense of wellbeing that Phillip applied for a 2011 Go for Gold Scholarship to help cover the cost of his gym membership. “I was thrilled to win the scholarship,” he says. “I Social and family connections would urge everyone with MS to exercise as much l Our community support workers (CSWs) and social as possible. Being as fit as you can is a vital aspect of workers link clients with community supports and help staying as well as you possibly can.” families to work together. l Our Peer Support Program provides one-on-one phone support, and support through online communities and Stress and depression management support groups. l Our psychologists provide stress and depression l The Confident Living Program supports people who management therapy and advice. are socially isolated by offering a range of social and l Our Wellness Days promote the benefits of stress- physical activities. reduction activities, such as mindfulness meditation. l The Community Visitors Scheme provides visitors to l The MS Library has a range of written, audio and DVD
Thinkstock/iStockphoto/ thinkstock/Digital Vision/Liz Gregg Vision/Liz thinkstock/Digital Thinkstock/iStockphoto/ people living in nursing homes. resources to assist with managing stress.
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Employment, occupation, volunteering Timely medication and symptom management l Our community teams help clients to maintain MS nurses provide information on medications and employment and manage MS symptoms at work. training in injection techniques. Along with other staff l Our employment service in Victoria provides assistance in our community teams, they also provide assessment, for people with MS to retain employment, access job education and support regarding issues around opportunities and secure relevant equipment. symptom management. l Our volunteer program offers numerous opportunities (see pages 26-27 for some examples). Intimacy and sexuality Our MS nurses and staff in our community teams can either directly assist or have access to resources and strategies to support people experiencing these issues.
Accessing psychological and physical support l Clinical psychology and neuropsychology services provide assessment, therapy and advice. l Our trained counsellors assist clients to better manage stress, change, grief and relationship issues. l Our CSWs and social workers help clients to cope with and manage the social and psychological effects Nutrition of MS. They assist clients to obtain practical support l Our Wellness Days include an information session on from community or government services, and to access eating well, nutrition and MS. things such as financial and legal advice. l Our community teams can provide relevant information l FlexiRest provides funding for carers of people with MS about diet and/or refer clients to a local dietitian. living in NSW who require respite or a short break. l Information resources and books on nutrition are l Respite services enable people with MS to access available from the MS Library. accommodation for short periods.
Staying connected with community Former lawyer Wendy Berkley discovered the benefits of being active in her local community four years before she was diagnosed with MS. In 2000, Wendy underwent surgery for a back injury Name: Wendy Berkley but didn’t take the necessary time off work to fully recover. Age: 46 As a result, she was left with chronic pain which ultimately Lives: Armidale, NSW meant she was, as she puts it, “put out to pasture” in 2004. Diagnosed with MS: “I was working 16-hour days, married to my career,” 2008 Wendy recalls. Now with no job to go to, Wendy packed up her Sydney apartment and bought a house in Armidale in the NSW New England Tablelands. “Despite my mother moving to Armidale six months earlier, when I arrived I was at a bit of a loss. I spent a lot These days, Wendy volunteers her time and of time sitting in an armchair,” she admits. “I eventually skills for six different organisations, local committees realised that if I wanted to maintain my independence, I and schools. needed to be around people. I also realised that people By 2008 when Wendy discovered she had don’t want to be around someone who grumbles. I relapsing-remitting MS, she understood that her practiced smiling in the mirror and got out to see what I community connections and the friendships it had could do.” forged gave her enormous satisfaction. Wendy initially made contact with others by attending “I’ve always preferred to be a giver, not a taker. the hydrotherapy pool at Armidale Rural Referral Hospital. Volunteering gets me out of myself, out of the house and “It doesn’t take long before people are contacting you,” makes me feel happier. If you feel good about yourself you she says. “I got swept up in local issues and involved with will have a more positive approach to your illness. You feel the local council.” as though you can cope and can keep on smiling.” thinkstock/Jupiterimages/Pixland
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‘Care’ for yourself too While Phil Edge considers himself to be a carer for his wife, Noelle, he also thinks he’s one of the “lucky ones”. Noelle has relapsing-remitting MS and although she has some difficulties with balance, as well as other MS-related challenges, she is “reasonably mobile”. Name: Phil Edge Age: 68 Phil says, while his load as a carer is not as heavy as Lives: Colac, Victoria some people he knows, he believes it’s important for all Wife diagnosed with carers to “pursue your own interests” in order to live a MS: 1996 balanced life. A former police officer of 30 years, Phil retired from the force in 1994 and has held a variety of jobs since, including driving a school bus which he continues today. Phil enjoys getting involved in the local community. He is on the committee of a few organisations, including his in groups. I find it rewarding, especially when I have the beloved Honda Gold Wing Motorcycle Club. More recently pleasure of seeing other people enjoying the event or he undertook our MS Peer Support Group Facilitation group that I have organised.” training so he could help establish a support group in Phil also gets pleasure from his daily exercise at the local Colac for carers and people with MS. fitness centre. “I think of the time at the gym as my ‘me- “I can’t help myself,” he laughs. “I just get involved time’. It’s important to make sure you get it.”
l Shared, supported accommodation services provide a home for people with MS.
Learning about MS l A range of health education and information sessions are held across a variety of topics (see our Events Support for carers section on pages 20-21). and family members CARERS l Various information sheets and publications are available on our website and via the MS Library. MS can have a significant impact on the lives of family l The MS Library holds a collection of books and online members and friends of people with MS. Just as it is resources for people living with MS. important for the person with MS to self-manage their symptoms and wellbeing, so too is it important for Spirituality or finding meaning family members and carers. Knowing how to manage People find meaning in various ways. For example, being MS, as well as making improvements in lifestyle can socially connected and having meaningful activities to make it easier for loved ones to support the person occupy our time can be a good starting point. with MS. Family members and carers also need to In addition, our Wellness Days promote the benefits draw on the support of their network as they, too, of mindfulness meditation and encourage people to follow a ‘supported self-management’ approach to explore ways to add more meaning and purpose in their own healthcare. their everyday lives. A number of resources are also Our organisation provides ongoing services, available via the MS Library. n programs and information to support families and carers of people with MS. These are highlighted throughout this article and more detailed strategies can be found in our Family Matters information series. * This article has been reviewed and endorsed by Booklet two, in particular, focuses on ‘Living Well with Dr Elizabeth McDonald, MS Australia – ACT/NSW/VIC MS’ and features important topics such as eating well, Medical Director keeping active, complementary therapies, coping with stress, dealing with depression, managing fatigue, Thank you to the following MS Australia – ACT/NSW/VIC balancing work and home, relationships and intimacy, representatives who contributed to this article: and where to go for support. Contact MS Connect on l Deborah Farrell, Manager Complex Care 1800 042 138 for a copy of this resource or for any l L.E. Ohman, MS Advisory Council member other support or questions you may have. l Andrea Salmon, Education Coordinator l Sharon Valks, Health Promotion Coordinator www.msaustralia.org.au/actnswvic autumn 2012 intouch 17 www.kissgoodbyetoms.org.au Kiss Goodbye to MS 2012 Now in its third year, Kiss Goodbye to MS will run throughout May 2012 and culminate in World MS Day on 30 May. Here is how you can get involved!
This year, throughout the month of May you may see many on Facebook and Twitter or buying kiss pins and lipstick-on- people wearing red lipstick. Different shades, different ages, your-collar stickers. different genders! They are all doing so with one thing in Visit www.kissgoodbyetoms.org.au or ‘like’ ‘Kiss mind – to Kiss Goodbye to MS. Goodbye to MS’ on Facebook for more details. So, why not get involved and wear, dare and share! Get sponsored to WEAR red lipstick, DARE others to take part, and SHARE the message with a ‘Kiss Goodbye’ event. https://www.facebook.com/KissgoodbyetoMS This cheeky appeal does have a strong message behind it – to get the country talking about MS and to seek donations to help find a cure. Everyone can participate by https://twitter.com/#!/KISSGOODBYETOMS making a donation, holding an event, sharing the message Step out to support MS The 2012 MS Walk and Fun Run will take place on Sunday 3 June in Melbourne, Sydney and Canberra. As the highlight of our organisation’s month-long Kiss Goodbye to MS campaign, the MS Walk and Fun Run is accessible to people of all ages, abilities and fitness levels. Run, jog or walk at your own pace, while having a great time, and raising awareness and funds for MS. MS Ambassador Kristina McMennemin offers these words of encouragement to anyone considering getting involved this year: “I became an MS Ambassador that it was possible and it has inspired participate. “Last year I noticed (and most recently, Ambassador me to continue to get fit. I now run at people in wheelchairs and using for the 2011 MS Walk and Fun Run least four days per week and will be walking frames taking part, which was in Melbourne) because I wanted participating in this year’s 10km Fun extremely inspiring and motivating to help raise awareness of the Run! to see,” she says. “For me, the MS event and also give back to the “I believe that by becoming more Walk and Fun Run is all about the organisation that has helped me physically fit, the progression of my MS community coming together and so much. condition has slowed and it keeps me taking part with family and friends.” “Prior to taking part in the 5km mentally sharp, motivated, positive Fun Run last year, I never would and feeling a lot better about myself. The MS Walk and Fun Run have thought I could run this I’m no longer afraid to try new things.” is on Sunday 3 June 2012. distance. After completing the event Kristina encourages anyone, at my own pace, I proved to myself especially those living with MS, to Visit www.mswalk.org.au
18 intouch autumn 2012 www.msaustralia.org.au/actnswvic “Most of all, I enjoyed being MS campaign welcomed by a number of MS supporters at the dock in Hobart. sets sail The outpouring of warmth and The Kiss Goodbye to MS (KGTMS) goodwill towards MS Australia and campaign received an early boost the KGTMS campaign was extremely of support this year with a ‘Kiss heart-warming.” Goodbye to MS’ branded boat In the lead up to the race, Bayer competing in the 2011 Sydney to was secured as a generous sponsor Hobart Yacht Race. and the crew sourced as much The crew of the ocean racing boat publicity as possible. “We wanted to Education and Beyond Outrageous had been gearing set the ground for what MS Australia awareness activities up to compete in the esteemed race, will be doing with the Kiss Goodbye so crew member and person with MS to MS campaign in the coming years MS Australia – ACT/NSW/VIC Ian Law contacted MS Australia with and, in particular, throughout the will host a number of activities the idea to use the boat to help raise month of May,” says Ian. The story throughout the month of May to help awareness and funds through the received prominent media coverage Kiss Goodbye to MS. These include: KGTMS campaign. and, in the live broadcast of the race The boat’s owner and skipper, Tony the giant-size KGTMS lips could be l MS Research Update: Find Warren, had previously competed seen emblazoned on the boat’s hull out what has been happening in the Sydney to Hobart Yacht Race and sails (pictured). in MS research in Australia and three times, the navigator once Simon McKeon, 2011 Australian internationally. The program will before, and the remaining crew were of the Year and founding Chairman include formal presentations competing for the first time. After of MS Research Australia, was the from researchers, and a Q&A finishing the race in four days, four patron of the sailing adventure. session. This is open to people hours and 25 minutes, Ian describes “Simon was incredibly generous with living with MS and members of the experience as an amazing mental his time,” says Ian. “He joined us as the community interested in MS challenge. “Given you’re racing a virtual crew member and we were research. not cruising for that length of time, very grateful for his support.” l Family Matters: We will be the level of concentration required, Crew members were sponsored celebrating the important role combined with serious lack of sleep, through the Everyday Hero web pages that family and friends play in really is a mental challenge. and, to date, have raised an amazing supporting people with MS. “It was good to get a sense of our $20,000 towards the KGTMS People with MS, their friends, limits and what we’re capable of. campaign. “We now hope that other families and carers are invited corporate sponsors/donors will have to join us for an informal seen the race coverage and will be get-together to meet others and more inclined to give their support share experiences. to the cause in the coming years,” l Annual MS Health says Ian. Professional Seminar and “Personally, I am very grateful for Workshop: Held on World MS the opportunity to be able to give Day, 30 May, at the Studdy MS back to the community and contribute Centre, Lidcombe, this event in some way. will include updates on the latest “Whatever efforts I’ve put in, I’ve developments in research and been repaid ten-fold with the degree the treatment and management of warmth and good wishes from the of MS, along with practical wider MS community.” workshops.
For more information about A number of information the crew’s racing experience, visit sessions and other community www.beyondoutrageous.com, or events will take place in local for more information on how areas. For the latest information, to get involved and support the check our website at www. KGTMS campaign, visit msaustralia.org.au/actnswvic
thinkstock/Design Pics thinkstock/Design www.kissgoodbyetoms.org.au n
www.msaustralia.org.au/actnswvic autumn 2012 intouch 19 EVENTS For bookings or more information, email [email protected] or call 1800 042 138
INFORMATION SESSIONS TELECONFERENCES Program is subject to variation. Please check Available to clients and their family members when you make a booking. Dates and times of across all regions throughout the year more sessions will be available on our website. To register, call 1800 042 138 Learn About MS Led by our Medical Director, this session is suited to Learn About MS Teleconference those newly diagnosed, and people wanting to meet Suited to those recently diagnosed. Meet others others and learn more about MS and our services and learn about MS and our services 19 April, 1pm – 3pm Dates TBC, please call 1800 042 138 Lidcombe via video-link from Blackburn and webstream Get Active with MS Teleconference Thinking and Memory Our physiotherapists discuss how fitness and Explore common MS-related thinking and memory exercise can help manage MS symptoms changes and how to manage them 14 March, 7pm – 8.30pm 29 March, 10am – 12.30pm Webstream – see box 21 June, 1pm – 2.30pm
Do you care about someone with MS? Managing Fatigue Teleconference Meet with other carers and family members to discuss Learn how to manage MS-related fatigue, with this and share ideas around resilience, self-care and support two-part teleconference series Weekday, weekend and teleconference 12 and 26 June, 6.30pm – 8.00pm Various locations. Call 1800 042 138 for details Continence Care in MS Teleconference Learn about bladder and bowel problems – PHYSICAL ACTIVITY GROUPS causes, assessment and treatment options Dru Yoga Classes 28 March, 7pm – 8.30pm A gentle form of yoga where postures are modified for 7 June, 10.30am – 12 noon all levels of ability Wednesdays 5.45pm – 7.15pm Working with MS Teleconference Call 1800 042 138 for term dates (NSW & ACT only) Gloria McKerrow House, Deakin, ACT Explore your rights and responsibilities at work, Cost: $16 per session superannuation, insurance and financial matters 26 April, 7pm – 8.30pm
Heartmoves for MS; maximising strength and flexibility; and aquatic exercise groups WEBSTREAMS are held throughout the ACT, NSW and Available in all regions. Please contact Victoria. For exact locations and times Andrea Salmon on (03) 9845 2765 to telephone 1800 042 138 or visit the ‘Health & access these sessions online Wellness’ section on our website at PNI – Psychoneuroimmunology ACT & NSW www.mssociety.org.au/health-wellness.asp Hear about the principles and practice of the ‘mind–body connection’ 14 March, 1pm – 3pm Calling expressions of interest Are you or someone you know a person affected by Thinking and Memory MS that speaks Spanish? Would you be interested in 29 March, 10am – 12.30pm joining an MS support group for people who speak 14 May, 6pm – 8.30pm Spanish? We are working with a couple of clients who would like to start a group that would meet Learn About MS monthly in Western Sydney. To express your 19 April, 1pm – 3pm interest please call 1800 042 138.
SPECIAL PRESENTATION - ALL REGIONS Shared decision on treatment: which, when and why? Presented by Eva Havrdová, Professor of Neurology at the First Faculty of Medicine, General Faculty Hospital, Charles University in Prague, Czech Republic.
This session will address the different treatment options and discuss reasons pertaining to when and why a choice is made throughout the treatment paradigm. NSW: 23 March, 4.45pm – 5.45pm, Lidcombe Victoria and ACT: 28 March, 11am – 12 noon, Blackburn and via video link to Deakin
* MS Australia – ACT/NSW/VIC appreciates the opportunity made available by Biogen Idec to hear this speaker. However, the organisation does not take responsibility for any ideas presented and recommends consultation with individual medical practitioners.
20 intouch autumn 2012 www.msaustralia.org.au/actnswvic For bookings or more information, email [email protected] or call 1800 042 138. Registrations essential. EVENTS
INFORMATION SESSIONS Learn About MS Led by our Medical Director, this session is suited to those newly diagnosed, and people wanting to meet others and learn more about MS and our services 19 April, 1pm – 3pm Blackburn and webstream 2 May, 5pm – 6.30pm Kyabram
Working with MS Explore your rights and responsibilities at work, as well as superannuation, insurance and financial matters 24 March, 10.30am – 12.30pm Geelong Pedal to the medal VIC 2 June, 10am – 1pm Blackburn This year’s MS Melbourne Cycle (formerly Melbourne Summer Cycle) promises to be bigger, Managing Fatigue better and more fun than ever. With a new name, An overview of MS fatigue and how to manage it new date – 25 March – and changes to the course, 20 March, 6.30pm – 8.30pm Footscray the event now has something for everyone. 23 May, 10.30am – 12.30pm Narre Warren We’ve improved the 46km course route and introduced a 15km Fun Ride, so whether you’re Medication Update a keen cyclist or you prefer to have some fun and MS Australia nurses will discuss the new and emerging ride at your own pace, gear up for this year’s event. medications available in Australia Carol Cooke, who is best known for her 22 March, 10am – 12noon Footscray involvement in the 24 Hour Mega Swim, is the MS 8 May, 10am – 12 noon Blackburn Ambassador for the 2012 MS Melbourne Cycle. Carol‘s latest sporting challenge has seen her Taking Control and Planning Ahead take up para-cycling and after competing at the Receive advice about enduring powers of attorney, 2011 Para-Cycling World Road Championships guardianship and administration in Denmark she now has her sights firmly set on 30 March, 10.30am – 12.30pm Reservoir winning gold at the 2012 London Paralympics. Carol is enthusiastic about the benefits of Thinking and Memory cycling and encourages everyone to get involved. Learn about common MS-related thinking and memory “Cycling is a great way to get out in the fresh air changes and how to manage them and sunshine and get some exercise. While it was 29 March, 10am – 12.30pm Blackburn and webstream hard for me initially, I really believe that regular 14 May, 6pm – 8.30pm Blackburn and webstream exercise is keeping me healthy. The fitter I get the better I am able to deal with the fatigue associated Mood and Emotions in MS with my MS,” says Carol. Learn about the reasons for mood and emotional “The Fun Ride is the perfect way to get involved changes in MS, and the various treatment options in the MS Melbourne Cycle. It’s accessible for 3 May, 6.30pm – 8.30pm Footscray all ages and abilities and a great opportunity for parents to bring the kids along and make it a Get Active with MS family activity. And, it’s another way to help Our physiotherapists discuss how fitness and exercise MS Australia – ACT/NSW/VIC build awareness can help manage MS symptoms and raise vital funds for people living with MS.” 4 June, 10am – 12 noon Get involved by starting or joining a team; Venue TBC, call MS Connect on 1800 042 138 encourage family and friends to ride on your behalf; support the event by making a general MS Australia Family Day donation online, or get behind a team from your 12 April, 10am Werribee Zoo area; or why not consider volunteering? There’s something for everyone!
24 HOUR MEGA SWIM 2012 MS Melbourne Cycle: Sunday 25 March Places are now available for new teams and individuals to register for these upcoming Mega Swims. For more information, call 1300 705 340 or Go to www.megaswim.com and follow us on visit www.msmelbournecycle.org.au Facebook and Twitter!
ACT: Canberra: 19 – 20 May NSW: Wollongong: 3 – 4 March Sydney: 23 – 24 June VICTORIA: Shepparton: 16 – 17 March Geelong: 31 March – 1 April Melbourne: 21 – 22 April Casey: 16 – 17 June www.msaustralia.org.au/actnswvic autumn 2012 intouch 21 The future is in your hands… In the Summer issue of Intouch, we talked about ageing and planning ahead. Have you thought about your future and how you will manage if, at some stage, you cannot manage your own affairs?
Do you know the difference between guardianship and powers of attorney? Have you thought about your assets and how they will be distributed once you’ve passed away? Many of us give little thought to these most significant issues. But to ensure peace of mind and that you do not cause undue stress on your loved ones, it is vital that these Save the date issues be addressed long before the need for The MS Readathon has another exciting program them eventuates. planned for 2012. This iconic fundraising program has Arranging your will, powers of attorney and captured the hearts of students, parents and teachers guardianship does not have to be a solemn for over 30 years, fostering a love of books and reading, exercise; it can be an opportunity to inspire while raising millions of dollars for people living with MS. and ultimately make a significant and lasting Our ‘30 Days of Reading’ program will be rolled out impact on people’s lives. For example, there in schools throughout Victoria, NSW and the ACT is the option of supporting an organisation like during the month of August, and we are very proud to MS Australia – ACT/NSW/VIC by a gift in your announce a partnership with the 2012 National Year of will. Have you considered leaving a bequest in Reading – a project initiated by Australian libraries and your will to MS Australia? library associations. With this partnership, we are launching an inaugural A bequest can support us to continue seeking one-day event: ‘60 MinuteS for MS’ on 24 August. The a cure for MS and providing care to people event will precede the National Year of Reading’s ‘Reading whose lives are affected by this disease, now Hour’ which will be held across Australia on 25 August. and in the future. More information will be available soon, but for now, please save these important dates in your calendar: Our new booklet Your Future in Your Hands l 2012 MS Readathon’s 30 Days of Reading – provides an overview of these important August topics. It is written in plain English and can l 2012 MS Readathon’s ‘60 MinuteS for MS’ – be obtained free of obligation and at no 24 August cost to you. Please call Donna Bradley, As always we wouldn’t be able to provide this fantastic Planned Giving Officer at MS Australia – program without the support of our wonderful volunteers. ACT/NSW/VIC on FreecallTM 1800 443 867. If you would like to get involved in this year’s MS
Readathon, please call us on 1300 677 323. n thinkstock/Stockbyte
22 intouch autumn 2012 www.msaustralia.org.au/actnswvic MS COMMUNITY
Carer: George Latham Age: 76 Cares for: His wife Mary, diagnosed in 1974 Children: Melissa, 42, Christopher, 40, and two young grandsons Lives: Mornington Peninsula, Victoria Advice: “Both of you are living with MS so make it the best life that you can.” CARERS
Nevertheless, George recognises that all carers need a little time out as part of their self-care, so, as well as the odd trip, he commits to taking seven hours respite each Thursday. George also credits friendships for sustaining him during difficult times. About 12 years ago, the couple joined the Southern Peninsula People with MS self-help group which meets at Rosebud on the third Wednesday of every month. “The group has about 20 members and has been running for 20 years,” says George who is now the group’s president. Mary and George with their grandsons, Ikey, “Initially, there were members who had knowledge that I five, and baby, Art. needed and now I pass it on.” As well as forging life-long friendships, the group provides comradeship, adds George. “As a carer you meet others Seek Support who understand you and the person with MS meets others who understand them. For those looking after a loved one, veteran “The carer and the person with MS have very different carer George Latham recommends fostering experiences so it’s important to find someone that you friendships with fellow carers. can talk openly with and who can give you advice when you need it.” Formerly a service engineer responsible for the plant and George urges all carers to join a support group. “You start equipment at Monash University, George Latham retired to off getting more out of it than you put in but after a while that care for his wife in 1998. turns around and you give back and it feels good.” n George was then 62 and he and Mary had been living with her slowly progressing MS since she had been diagnosed at 30. “Mary had been using a manual wheelchair but when she Back in October 2011, George attended a carers event lost the use of her legs completely, I gave up work.” for National Carers Week at the RACV Club Cape George speaks frankly, with no remorse; just a clear Schanck called Secret Carers’ Business. The event was understanding of the burden MS has placed on them. “For run in partnership between MS Australia – ACT/NSW/VIC the past three years Mary has also lost the use of her arms and Brainlink to provide much-needed time out for carers and she has difficulty speaking. We’re fortunate because through a day of relaxation and pampering. we have a lifting device in our house and van for Mary and the wheelchair, but I’ve had to learn how to access the things we need. “Adjusting is always difficult but you do it because you live Join us by your commitments. There are days when you say, ‘surely there’s a better life than this’.” Then his voice softens. “But it’s Visit the MS Australia – ACT/NSW/VIC Carers just as hard for Mary. We can both get down in the dumps; Peer Support Community. This online community we both live the MS life. It’s important to manage your state provides carers and family members with the of mind and to enjoy what you can.” opportunity to meet and connect in a private That philosophy motivates the couple to wring as much setting. Visit www.mc2.vicnet.net.au to join – from life as they can. Two years ago they took a cruise to register your email address, use the search New Zealand on the Sun Princess and five years ago George function key to find MS Australia – ACT/NSW/VIC went on a solo trip to China. “I had been to the old China Carers Peer Support Community and submit your when I was in the British Navy and I wanted to see the new application. For information on support groups in China. Mary went into respite care while I was away. I had a your area, call MS Connect on 1800 042 138. great trip but regretted that Mary wasn’t with me.” www.msaustralia.org.au/actnswvic autumn 2012 intouch 23 Community fundraising roll of honour MS COMMUNITY We would like to thank the following community members who helped raise funds for MS over the past three months:
l Angela Davies – Australia Post workplace event l Anna Jepson – donation sponsoring Helen Cox in Iron Man l Beverley McKinnon-Matthews – Melbourne Cup lunch l Bob Bates – Calendar l Carrot and the Coffee Dog – cycled from Perth to Sydney l Castle Hill Public School – mufti day l Caterina Severino – Christmas light display l Chrissie Whitlock and Committee – Grand Illusions calendar l David Ellis and BMX Bandits – Tasmania adventure run l Emily Farhart – donation in lieu of birthday gifts l Hilary Brittan and committee – Melbourne Cup lunch l Jan Smith and family – Christmas light display l Joanne and Todd Thurlow – Scout fete l Judith Stringer – donation in lieu of birthday gifts l Julie Laws – shopping bus tour and raffle l Lismore Council – summer launch l Luke and Mia Bevans – donation in lieu of wedding gifts l McCloy Group – donation Ironbark Ridge open day l Nicole Gillette – Narromine Public School ‘Red Day’ Central Coast l Peter Sheridan and Aztec Australia – workplace donation l Rebel Sport Run 4 Fun – Vince Ruggiero, Annabel Hickey, Antonia Howard misses Katie l Sophie Stringer – Executive Heath Management workplace Kris Kringle The MS community lost one of their spirited l Vivian Sale – garden party/fashion show campaigners when Katie Booth lost her l Zona Tripp and committee – annual fundraiser battle with cancer a few months ago.
As a dedicated supporter, advocate and person living with MS, Katie Booth is sadly missed. A daughter’s words In 1992, Katie was involved in setting up the Central Coast Katie’s daughter, Gina Booth, wrote this moving tribute on MS Branch Support Group (in NSW) with Rita and Ron behalf of her brother, Mitchell, and sister, Lisa. Thwaites. She also co-edited MagScene which featured her “Despite having MS for nearly half of her life, our mother had humorous column ‘Ms Busibody’. an invincible spirit. She embraced numerous volunteer roles Katie was a member of the NSW MS Advisory Council including Meals on Wheels, Girl Guide leader and Pittwater and advocated on behalf of people with MS through her Catamaran Club Secretary. She also studied art, adult literacy involvement in transport disability meetings. teaching, video production and creative writing. For many years, Katie produced a local bi-monthly “Her dry sense of humour got her (and us) through the tough newsletter to keep Central Coast residents with MS up times. She was also very giving, so in her honour I will reveal to date with the latest MS news. Above all, Katie was a three of Katie’s trade secrets: tremendous support to people with MS. l Always have something to look forward to. Clem Payne, a carer of a person with MS and also one of l Fill your senses with art, music and beauty, and your Katie’s friends, says, “When Katie had to attend meetings in favourite food. Sydney as part of her work on behalf of people with MS, she l If you aren’t getting enough hugs – ask for one. would travel by train. This often meant travelling in non-air conditioned compartments when temperatures were very “Katie taught her granddaughter, Bonnie, how to read. A year high but she never complained. She was just doing her best later, Bonnie presented Katie with a washing basket full of for all of those who have MS”. books that she had read for the MS Readathon. That made Clem says that many people sought Katie out for Katie very proud! much-needed advice and the local branch recognised her “We would like to thank all the wonderful people who outstanding service with the award of life membership – touched our mother, particularly the community support the only recognition available to reward such selfless workers who empowered her with the gift of being useful. Katie community service. even taught some of these staff how to cook. Once when in To those who knew her, Katie epitomised the saying, hospital, Katie reflected on homecare staff saying, ‘I feel like I’ve ‘I’ve got MS but MS hasn’t got me’. been treated better than the Queen’. We miss her deeply.” n
24 intouch autumn 2012 www.msaustralia.org.au/actnswvic Thanks for your hard work! We’d like to thank all the people who take the time to raise money to support those living with MS. Every little bit helps and we appreciate your efforts. fundraise to support the MS cause. people sponsored the winner. In all, the Being extremely fit and active, in two events raised $3,500. 2009 Fleur decided she would So what keeps them motivated? undertake a 100km run across “My family, Fleur especially, want to Kangaroo Island. Simone assisted show their support for what I am going as ‘road crew’ while Fleur completed through,” explains Simone. “It’s their her run over several days. way of saying they understand and it’s This was just the beginning of what just another way they can help. For me, has culminated in the Van Den Berg it’s great to know that the money raised family raising almost $10,000 for can help the organisation to continue MS Australia – ACT/NSW/VIC through providing the services they do.” A family unites various community fundraising activities. Simone and Fleur are already Simone Van Den Berg recalls always Simone’s brother, Julien, has since thinking about their next fundraising being involved in charitable fundraising. participated in the Sydney to the Gong venture but in the meantime, Simone “Even when I was in high school and Ride; Simone and Fleur have organised offers this advice to others thinking university, I would help out with various a Christmas White Party and fundraiser about fundraising: “Anybody can do door-knock appeals after school,” she for young people at their local club; it! Just keep it simple. No matter what says. So when Simone was diagnosed and their most recent event saw Fleur event you organise, people just want to with MS five years ago, there was no running across the MacDonnell Ranges donate money to help out. Just be clear question where the 26-year-old and that surround Alice Springs where she about what you are doing and where her family would concentrate their now lives. Simone took care of the the money is going, use the network charitable work. fundraising, which also led to a group of people you know, and delegate as Simone’s sister, Fleur (pictured of her friends volunteering to do their much as possible because people really above), was first to suggest a way to own fundraiser – a kayak race, whereby do want to help.” n
Volunteers on the set of Opera crowd tune in to the MS cause Opera by Candlelight (L to R): Rod, Rohini, Sally, Liz, Guyani, The refurbished Albert Hall in Canberra was lit up by the Glenda and Amanda. sounds and sights of the annual Opera by Candlelight concerts held over three nights in February. In its fourth year, Concert Director Carl Rafferty again chose MS Australia – ACT/NSW/VIC as the event’s charity of choice. Music lovers adore this event, with the grand venue providing a unique supper-style presentation. The 25-strong cast are the rising stars of Australian opera, who all beautifully performed requests received by Carl throughout the past year. Carl invited MS Australia – ACT/NSW/VIC to promote sales for our Art Union raffle and collect donations during the interval. Twenty four enthusiastic volunteers worked over three nights to encourage donations and inform patrons of the challenges facing people with MS. We are proud to announce that more than $5,100 was raised throughout the event! We would like to thank Carl and all of the volunteers for their ongoing dedication and support. n
Get involved! Would you like to be a community fundraiser for the MS l ACT: Mirimba Kovner, (02) 6234 7030, cause? As you can see, the options are endless and every [email protected] little bit counts. Gather your friends, family and colleagues, l NSW: Kerry Hill, (02) 8299 0134, and discover how you can make a difference. Get further [email protected] inspiration from our website at www.mssociety.org.au/ l Victoria: (03) 9845 2726 events-community-fundraising.asp or contact:
www.msaustralia.org.au/actnswvic autumn 2012 intouch 25 MS COMMUNITY Volunteers in action How our dedicated volunteers are helping to make a difference to people living with MS. Mary Webb supports MS ‘I wanted to give back’ fundraising events. Mary Webb considers herself fortunate. “I was diagnosed with relapsing-remitting MS in 1995 when my children were To this end, Mary joined the ACT Disability Advisory aged three and one. I feel lucky, though, because I have Council in 2011. However, assisting people with MS remains remained reasonably well,” she explains. “I’m mobile and I’m her focus. In 2006, she set up a peer support group. “We able to work part-time. Because of my good fortune, I try to regularly meet at Gloria McKerrow House for a coffee and a help others with MS who aren’t so well.” chat. It’s a pleasure meeting up with other people with MS Mary, a science editor who lives in Canberra, says her because they just ‘get’ you. You can become friends with desire to volunteer was ignited in 2000 when an MS nurse them straight away.” gave her instructions on how to administer injections. “I was She developed one such friendship with her neighbour, so grateful that I wanted to give back, so I started selling raffle Cigdem La Salle, who also has MS and has shared her tickets. From there it progressed to helping with mailouts and story on page 10. The pair has become a fixture at the the MS Readathon.” Opera by Candlelight fundraisers where they help with the In 2001, Mary was asked to join the Board of the ACT MS collection of money [read more about this year’s event on Society, which she did, and later served as Vice-President. page 25]. Mary remained on the Board when it became the ACT In 2010, Mary also trained as a telephone Peer Support Advisory Board to MS Australia – ACT/NSW/VIC after Volunteer. “I did this partly because of the benefit I got from the ACT MS Society merged with the broader MS talking with other people with MS. I thought it would be good organisation in 2008. to be able to offer something to people who don’t have One of her most rewarding roles has been to participate access to an ‘in person’ support group, and who sometimes as a national MS Advocate. “I attended the first meeting of may have never even met another person with MS. national Advocates in 2004 and I continue to be involved in “If anyone is reading this and thinking of volunteering, I that program. Lobbying politicians has been really productive. urge them to do it. It’s really beneficial because, while That experience taught me that it is good to do something to it’s good to be helping others, you find it also helps help people with other types of disabilities as well.” you,” says Mary. n
Volunteers It’s a wrap! master gift wrapping. The week leading up to Christmas l “I want to thank you for this saw the launch of our new gift wonderful opportunity. I’ve enjoyed wrapping campaign in Centro it immensely and have met some Shopping Centres throughout incredible and generous people.” NSW and Victoria. More than 430 l “My friend and I really enjoyed our volunteers filled 1,076 shifts across volunteering, and look forward to 16 Centro Shopping Centres in NSW taking part again next Christmas.” and Victoria, as well as Robinsons l “It’s amazing how successful a few Bookshop in Frankston, Victoria. volunteers, a bit of paper and a bit All up, these dedicated volunteers of tape can be.” gave 3,800 hours to wrap customers’ gifts in exchange for a donation. Given the large number of people Every volunteer is to be visiting these centres, the organisation congratulated for facing the challenge enjoyed a high level of visibility, which of wrapping gifts of all shapes and helped to promote awareness of MS sizes. Some the volunteers offered the Australia – ACT/NSW/VIC and our following comments: services to the community.
26 intouch autumn 2012 www.msaustralia.org.au/actnswvic Volunteer opportunities We are always looking for more volunteers and here are some opportunities we’re aiming to fill right now. ALL STATES The MS Walk and Run will take place in Sydney, Melbourne and Canberra on 3 June 2012. We require volunteers to perform a range of duties to help make these events a success in each location. For more information, visit www.mswalk.org.au
VICTORIA: l The MS Melbourne Cycle will take place on Sunday 25 March. Volunteers are required to assist in various capacities. l Our MS Community Shops require volunteers to take on the role of Day Leader in the Geelong shop Barbara Cocks has been a on Mondays and Thursdays and Kew on Mondays, huge supporter Tuesdays and Thursdays. of our new MS Community Shop. l MS Community Shops in Fairfield and Melton require volunteers from Monday to Saturday. Barbara’s helping hand l Volunteers are needed to help people with MS de-clutter their homes in Frankston and Ringwood. When Barbara Cocks retired from her position as a nurse unit manager in mid-2011 she began looking around for l Our respite services in Watsonia, Lock, Bundoora and volunteer work. Ocean Grove require volunteers to take residents out for coffee, play board games, read the paper, provide “I had always thought that when I left full-time gentle hand massage or help write letters. employment I would do something to give back to the community,” Barbara says. “My husband, Geoff, and I have l Italian-speaking volunteers are required to visit people always volunteered with the kid’s sports; I coached netball with MS in Hoppers Crossing, Brighton, Balwyn, teams and I’m still training umpires.” Pascoe Vale, Rowville, East Keilor, Clayton, Bright, While Geoff, who is also retired, donates his time to the Wangaratta and Shepparton. Powerhouse Discovery Centre (the Powerhouse Museum’s storage centre at Castle Hill which is also open to the public), NSW Barbara chanced upon our new MS Community Shop at l An administration/librarian volunteer is required for 22 Old Northern Road, Baulkham Hills. a half day each week at the Studdy MS Centre in “I don’t often walk along Old Northern Road,” Barbara Lidcombe to assist with archiving and general duties. says. “I usually drive past it but one day in November I was l Social support volunteers are required at Lidcombe to walking by the empty shop and I saw a sign in the window run activities for clients and to go on outings. A driver’s calling for volunteers.” licence would be beneficial. As Barbara had nursed people with MS, she was familiar l A social support volunteer who can sew is required at with the disease and decided this was a cause worthy Lidcombe for a half day each week. of her time. The shop was being refurbished when Barbara l A female volunteer is required for community outings offered to help and she was instrumental in getting the around Newtown. store up and running in time for its unofficial opening on 28 November 2011. ACT “I sorted and ironed clothes and now it’s open, I also l Volunteers are needed to help on the MS Walk and work behind the counter at least two afternoons a week. It’s Fun Run in an ongoing capacity for one day per week entirely different from anything I have ever done and from mid February to the end of June. Responsibilities I’m enjoying it.” include, assisting with rostering volunteers, operations The shop was officially opened on 16 December by David and media calls. Based at Gloria McKerrow House, Elliott, the Member for Baulkham Hills. days can be negotiated. “Leading up to the opening, our team built up a rapport l Two volunteers are required for ongoing social support in the local community and asked them to donate clothing in the Belconnen area. Mornings are best and days are and household goods in order to stock the store,” says flexible. These roles would suit someone who is patient Barbara. “We will also rely on the continuing support of the and a good listener. community to keep the shop stocked with items to sell.” If you are interested in these or any other About 30 volunteers work at the Baulkham Hills shop. volunteer role across our regions, please If you are interested in joining the team please contact MS call MS Connect on 1800 042 138. Connect on 1800 042 138. n
www.msaustralia.org.au/actnswvic autumn 2012 intouch 27 MS COMMUNITY Supporting peers is satisfying
Mark and Brenda Fisher Mark Fisher is keen to encourage other people living with and their children. MS to become Peer Support Volunteers. “I think I get more out of it than the people I’m supposed to help,” Mark laughs. Diagnosed with secondary progressive MS in 1996, 49-year-old Mark lives in Melbourne with his wife, Brenda. They have three children, now aged 23, 19 and 18. “During the first five years after I was diagnosed I had to come to terms with the gradual loss of a lot of things, including the job I enjoyed loading planes for Ansett,” he recalls. About 12 years ago, Mark began using a wheelchair sporadically and has used it full-time for 10 years. The couple built their house to meet the requirements of Mark and his chair. Seven years ago, when he was asked to become an MS Ambassador, Mark “seized the opportunity to do something positive about a negative situation”. For similar reasons, nearly three years ago he enrolled in a two-day training course to become a Peer Support Volunteer. “I have worked with a couple of people who have MS and it feels good to be able to offer them an understanding ear and help them move their lives forward,” says Mark. Free MS Book Offer If you don’t try, you don’t know The Gawler Foundation what you are capable of... will provide a free copy of Professor George Jelinek’s Participating in peer support book, Overcoming Multiple can have far-reaching benefits Sclerosis – An Evidence- Based Guide to Recovery (Recommended Retail Price $45) to anyone affected As a result of his valuable contributions, Mark was directly or indirectly by MS. nominated to participate in the 2011 Leadership Plus Program at RMIT University. He graduated in November. This follows a donation from a benefactor who has This unique program has been designed for people of done well using this approach. all abilities and fosters the values of diversity in leadership. You can pick up your free copy from either of The It provides a supportive learning environment and delivers Gawler Foundation’s Resource Centres: a range of accredited leadership competencies and skills, Hawthorn – 565 Burwood Road, Vic which enable participants to become involved and work in Mon - Fri: 9am to 4.30pm the wider community. Yarra Junction – 55 Rayner Court, Vic “It was a grand opportunity to broaden my horizons,” Mon - Fri: 9am to 5.00pm says Mark. “I wrote one of my assignments based on the We can also mail your copy for a Postage & Handling thought that ‘the only real failure in life is the failure to try’. charge of $17.00. If you don’t try, you don’t know what you are capable of. I would encourage other people with MS to become an Phone (03) 5967 1730 or order Ambassador or a Peer Support Volunteer because it’s such online at www.gawler.org a positive thing to do.” Limit one book per person. While stocks last. Participating in peer support or other programs for people with MS can have far-reaching benefits.n
28 intouch autumn 2012 www.msaustralia.org.au/actnswvic Lisa and her co-facilitators, Frank Howard (left) and Christian Sauer. Support Group profile ‘I realised I could help’ In June 2004, I was diagnosed with relapsing-remitting Lisa wanted to start the St Kilda Peer Support MS at the age of 48, but I had experienced symptoms Group because she believes that everyone for at least 10 years. My husband and I have four adult needs support and friendship. children and three grandchildren between us, and we How did you become involved in peer support? live in Tumut, in regional NSW. I was diagnosed in 1996. I was turning 30 and pregnant with I became involved in the Tumut MS Support Group the second of my four children. I have relapsing-remitting MS when I was first diagnosed with MS. I expected to see and in retrospect I experienced my first symptom at 21. When everyone in wheelchairs or using walking sticks so it I was first diagnosed, I found the MS staff supportive but I was reassuring to see they looked just like me. I am needed to speak to a person living with MS. About 11 years mobile, but MS has caused a lot of challenges with ago I became involved in giving telephone peer support. my cognition. After some years learning about MS and meeting Why is peer support important? other people living with MS, I realised I could help Speaking to people living with MS is a positive experience. others, so I became involved in the MS Australia – Peer support helps people to move on with their lives from ACT/NSW/VIC Peer Support Program. the moment they are diagnosed. It also helps to have In 2010, I attended two days of training at the Studdy support during all the challenges MS and life brings. For MS Centre in Lidcombe. Since that time I have been example, my marriage broke down four years ago, which matched with a number of people with MS, for whom I was devastating at the time, and three years ago my MS got provide a listening ear via one-on-one support over the worse and I had to stop driving – I now use a scooter which phone. The Peer Support Coordinator matches enables me to be independent and still get out and about. me with people needing support, and the client is Now, I am happy and have a supportive, loving partner. offered six phone calls, which they can choose to When I moved to the south-east area of Melbourne it was occur weekly, fortnightly or monthly. We talk for up to suggested that I start a face-to-face support group. The an hour each time. St Kilda Peer Support Group first met in October 2011 and 2 In 2010, I also became a moderator in the mc online we have 15 members and it’s growing. chatroom as a Peer Support Volunteer. There is also a group of people with MS, mostly from country areas, How often does the group meet? who meet for a weekend away in a different town each We meet at the Betty Day Community Centre in St Kilda on year. This is usually in May. Our partners attend and we the first Tuesday of the month. The youngest member is in his all have a wonderful time. early twenties and the oldest is 65. Over the years, I have taken to organising our support group in Tumut to meet up for coffee and What does the group offer? MS information sessions about every three months. Fun and laughter. We don’t dwell on MS. It’s about supporting Usually five people attend but we can get up to 10. each other through whatever we are facing. Nobody knows I look forward to catching up with people. It’s good what tomorrow will bring. MS doesn’t stop me. I intend to to have contact with others living with MS, especially keep living the way I want to live. n in country areas where we don’t get the opportunity to attend an MS centre close by. It’s been rewarding to offer support and to have There are a number of MS support groups contact with people who you know understand what operating throughout the ACT, NSW and Victoria. you are going through. n To find a group near you, please contact MS Connect on 1800 042 138.
www.msaustralia.org.au/actnswvic autumn 2012 intouch 29 MS COMMUNITY MS Ambassador profile It’s inspiring to meet someone who turns misfortune into an opportunity. Amanda Campbell is one of those people.
Tell us a bit about your MS journey? When I was 24 I experienced mild numbness and pins and needles which was soon diagnosed as MS. I was upset and shocked but I didn’t know anything about the disease. This was probably a good thing because it meant I didn’t have any horror stories in my head.
What did you do after you were diagnosed? I researched MS and I realised it was a disease that could potentially be devastating. At the time, I was working in the fashion industry with my life ahead of me so I put the MS behind me and I pushed on.
Did anything change? Not for a couple of years but in 2007 I had an exacerbation which weakened the left side of my body and I also had difficulties with balance. That scared me because it had been easy to forget that I had the disease. Then in 2009 when I was setting up my fashion business, I became paralysed along my left side. I had been working three jobs Name: Amanda Campbell and I was over-doing it. Age: 31 Occupation: Studying sports kinesiology Lives: In Melbourne with twin sister and a flatmate Diagnosed with MS: 2004 If you have a positive attitude, the illness can push you to strive for bigger and What have you done as an MS Ambassador? better things I’ve spoken to the Rotary Club of Fitzroy. It was scary and empowering, and their positive feedback was wonderful.
How did you cope? What is the message you most like to deliver? I was devastated. I was hospitalised for two months and I want to tell people that having an illness is okay and by lost my business. I had to reconsider what was important accepting it, you make other people feel comfortable with and during my rehabilitation, the physiotherapists inspired you. You can live a normal, happy and meaningful life. In me. I saw how rewarding their work was. Kinesiology fact, if you have a positive attitude, the illness can push you assisted with my rehabilitation and, while it took a while to strive for bigger and better things. n to regain my health, in 2011 I started to study sports kinesiology. I love it because I’m learning all about the connection between the mind, body and spirit. Would you like an MS Ambassador to speak at your next corporate, school or community event? Why did you become an MS Ambassador? Contact the MS Ambassador Program team via To share my recovery story. I had been defeated and MS Connect on 1800 042 138. now I have my life back on track.
30 intouch autumn 2012 www.msaustralia.org.au/actnswvic HEALTH+WELLNESS
Does the site present a broad view of health? l Does the site recognise that health has many elements, can be different for everyone and is affected by basic Take charge things like income? l Does it tell you about the choices available to you? l Does it admit that not everything about health is totally of your health understood, and that some things are uncertain?
The internet has become our biggest Is your privacy protected? source of information but not all of l If the site asks you for information, does it tell you exactly why it wants this information? it is accurate and unbiased. Here are l Are the site’s privacy guidelines stated? some tips to using the internet to find l If you have to register to use the site, is the reason clear reliable health information. and your privacy ensured? n
Ask yourself the following questions when looking for reliable Useful online references health information online. l Australian Government’s HealthInsite website: www.healthinsite.gov.au Who developed the site? l Consumers’ Health Forum of Australia (CHF): l Is it clear who wrote the material? www.chf.org.au l Does the author state his or her perspective, such as ‘I am a medical expert’ or ‘I am a cancer survivor’? l Is it clear who published the material? Source: This is an edited excerpt of a fact sheet, ‘Using the internet to find reliable health information’, produced by the National l Is any commercial interest or sponsorship stated clearly? Prescribing Service – www.nps.org.au l Is it clear why the site was developed? l Can you contact the author or publisher?
Is the content complete and in depth? l For diseases or conditions, does it indicate: - the causes - how to prevent them - how to recognise them - how they are diagnosed - treatments/procedures (and alternatives) - what happens after treatment is over - how to maintain quality of life once a condition is diagnosed.
l For information on treatments, does it cover: - how treatments work - the benefits and harms - the effects on quality of life - possible alternative treatments and lifestyle options - the likely effect of not using the treatment?
l Is it clear whether the material is based on scientific evidence? l Is it clear where the information is sourced from? l Is the material presented within the Australian context?
Is the information up to date? Is the date of the last update clearly visible?
Is the site easy to use? l Is the language easy to understand
thinkstock/Fuse l Is the presentation clear?
www.msaustralia.org.au/actnswvic autumn 2012 intouch 31 HEALTH+WELLNESS Spotlight on: Social workers and community support workers
It can be overwhelming when MS is having a significant impact on several areas of your life. Our social workers or community support workers can work with you to overcome some of these challenges and connect you to local services that can make a difference.
What is a social worker and what is a community support worker? Social workers and community support workers (CSWs) seek to improve the quality of life and wellbeing of an individual, group or community. They may provide information, counselling and/or emotional and practical support. Social workers are qualified with a Bachelor of Social Work. They are committed to a professional code of ethics that incorporates core values and principles around human dignity and worth, service to humanity, social justice and integrity. CSWs are not necessarily trained social workers but they work from a similar perspective. They come from a range of professional backgrounds and will have predominantly worked in community or rehabilitation organisations.
How are social workers and CSWs relevant to people with MS, their families and carers? Our social workers and CSWs understand that MS can create a burden on the individual and their family. There are available for family members and carers. This means may be emotional, social and financial implications that can they are able to provide or refer people to: affect a person’s wellbeing and quality of life. The role of l crisis intervention services a social worker or CSW is to work with clients to address l facilitated support groups and education programs and minimise the impact of living with MS, and to assist l family support and education them to explore the strategies and services available to l short-term counselling help them live well. l assessment and support for depression, carer stress Family members and carers of people with MS can often and burnout be overwhelmed so, accessing the support of a CSW or l assistance with housing, finances and identifying social worker can be helpful in assisting these individuals packages of support to maintain their carer roles. l support where there are issues of abuse or neglect. A social worker or CSW will have considerable
knowledge about community and support services that Our social workers and CSWs also support and educate thinkstock/Jupiterimages/Comstock
32 intouch autumn 2012 www.msaustralia.org.au/actnswvic HEALTH+WELLNESS
others in the community. They offer student social and neuropsychologists; or other external services and work placements and run tailored programs for health case managers. professionals who wish to learn about the impact of MS on people’s lives. They also provide MS-related education How do I access this service? and information to supported accommodation and Clients who would like to access a CSW or social worker residential aged-care facilities. can contact MS Connect on 1800 042 138. Referrals can also be made by anyone who knows the person with MS, What can a person expect from a as long as they have consent to do so. This may include meeting with a social worker or CSW? family members, carers, friends, and health professionals, MS Australia – ACT/NSW/VIC social workers and CSWs including a GP or neurologist. All referrals are screened are trained to understand complex issues. They are by MS Connect and allocated to a social worker or CSW. available to offer emotional, psychological and practical Any family member or carer of a person with MS who is support, empowering clients to live rich and fulfilling lives experiencing their own challenges should also contact and to become advocates in managing their own health. MS Connect to find out about the support available.n This helps to ensure that clients are informed about their options so that they can make relevant decisions throughout all stages of their MS. You may want to consider the support To achieve positive outcomes, it is important for a of a social worker or CSW when: client’s broader environment, networks and support l adjusting to a new diagnosis or disease systems to be taken into consideration. By conducting progression an assessment, a social worker or CSW will gain an l advocacy on disability-related issues is required understanding of how MS is impacting on all aspects l you need support and assistance with navigating and dimensions of the person’s life. The social worker the health and disability system or CSW will then work with the client to develop an l isolation, remoteness and distance are affecting individualised program plan and set goals. In helping you and your access to services a client to build this plan, our social workers or CSWs l you and your family need help with managing the will adopt a collaborative approach, tapping into our issues that come from living with chronic illness multidisciplinary teams which include physiotherapists, (e.g. strategies, information and services). occupational therapists, nurses, clinical psychologists thinkstock/Jupiterimages/Comstock HEALTH+WELLNESS
Time to quit
Smoking is a habit that can be hard to break but people with MS need to make it a priority if they are to improve their health and wellbeing.
If you are a smoker you already know that it damages Studies have found that smokers have abnormally your health. You may have even tried to quit a few times high levels of peripheral blood leukocytes (white blood but don’t despair, you can still free yourself of nicotine. cells that are responsible for the immune system) and Especially motivating is recent research that reveals abnormally high levels of active inflammatory agents how avoiding smoking may not only reduce newly in the body. developed cases of MS but that quitting is also likely to Given MS is an inflammatory, autoimmune disease, result in reduced progression, fewer relapses and higher these smoking-related issues can add to the effect MS remittance for those already living with MS. has on the body. In addition, Dr Elizabeth McDonald, Medical Director There are other associations as well but it makes sense of MS Australia – ACT/NSW/VIC, says people living with that giving up smoking is good for your overall wellbeing. MS need to take the same steps to preserve their general For many people who are addicted to nicotine, however, health as the rest of the population. “Not everything the question is how. that goes wrong with your health will be due to MS,” she explains. “Smoking increases the risk of respiratory Beat cravings problems and cardiac disease in everyone, so it is in The habit of smoking can stem from a physical or your best interests to quit.” psychological addiction. The desire to smoke can be Of equal importance, according to Dr Gary Fulcher, triggered by an action, such as having a cup of coffee, Senior Clinical Psychologist, MS Australia – ACT/NSW/VIC, or be associated with social events and other activities. is the evidence that passive smoking is enough to increase Many smokers will claim that smoking relaxes them but the risk of MS. “For parents, this means that your smoking this is a fallacy, says Dr Fulcher. “Nicotine is a stimulant, increases the risk of your children developing MS,” he so smoking winds people up. The so-called relaxation warns. “The risk increases the longer someone is exposed is just the relief from the addicted need for nicotine. In to passive smoking, so the sooner you quit, the sooner you reduce the risk to your kids as well.”
How is smoking related? You are probably aware that MS is a disease of the central nervous system (CNS) which includes the brain, the spinal cord and the optic nerves. In people with MS, myelin, which encases the nerve fibres (axons) of the CNS and assists in nerve function, becomes inflamed and damaged (demyelinated). The nerve fibres themselves may also be damaged. The body’s immune system normally defends the body from viruses or bacteria. In the case of MS, however, the body’s immune system attacks its own myelin, causing
problems with nerve transmission. thinkstock/Stockbyte/thinkstock/istockphoto
34 intouch autumn 2012 www.msaustralia.org.au/actnswvic HEALTH+WELLNESS
reality, research has shown that people with MS who MS among people with relapsing-remitting MS was smoke have much worse mental health and people who three times higher in smokers than non-smokers. This use nicotine are twice as likely to be depressed. Once the suggests that transformation of MS into a progressive habit is broken and the nicotine need is cleansed from the course is likely to be related to cigarette smoking. body, the ex-smoker can learn to really relax and improve Finally, a study conducted in Tasmania revealed that their mental health.” the more a person with MS smoked, the worse their levels To beat the cravings, you need to have a plan of action, of disability were over time. says Dr McDonald. “These days there are a range of With so much evidence pointing to the risks, there is treatments such as nicotine patches, various drugs and really no better time to quit than now! n counseling programs to help smokers to quit. Smokers need to decide on a plan of action and seek the help that For a list of references for this article, please contact the editor. best suits them.” Dr McDonald recommends that you start your research by visiting online resources such as www.quitnow.info.au International campaign or phoning the Quitline on 131 848. World No Tobacco Day will be held on Thursday “Also, speak to your GP about the various options and 31 May. The campaign is promoted by the World visit your local pharmacy to discuss nicotine replacement Health Organisation to counter the tobacco industry therapy such as patches, inhalers and lozenges.” because of the danger it poses to public health. Remember to seek support from your family and Tobacco use is one of the leading preventable friends and ask them not to smoke when they are with causes of death. The global tobacco epidemic kills you or to offer you cigarettes. Psychologists can also help nearly six million people each year, of which more than as they are experts in assisting people to break habits 600,000 are people exposed to second-hand smoke. and change behaviour. This year the theme is ‘tobacco industry “It is also helpful to realise that one slip doesn’t mean interference’. For more information visit www.who.int/ that you should give up on quitting,” Dr McDonald tobacco/wntd/2012/announcement/en/index.html advises. “Instead of punishing yourself for having that one cigarette, review your strategy and find ways to strengthen your resolve. Once you are free of the smoking habit, you will be so glad you did.”
Need evidence? T.M. Recent studies have compared the incidence and portable mobility systems progression of a trait or illness among groups of people or populations (e.g. smokers versus non-smokers). Known Fits in car boot • Foldable as epidemiological studies, they indicate the relationship No tools needed • Airport friendly between the incidence (or severity) of the illness, such as MS, and a particular environmental influence, such as Wide seat • Armrest retractable cigarette smoke. Lightweight 29kg In a general population-based study of 22,240 people (including baƩ ery) in Norway, the incidence of MS was double in smokers Heaviest part 12kg compared to non-smokers, with the extra risk as high for male and female smokers. Also, almost all smokers with Easily removable MS had been smoking long before their MS diagnosis. baƩ ery pack (for recharging) In the United States, an even higher incidence of MS (60 percent) among smokers versus non-smokers has TGA Registered been reported in a study of 238,638 women. Other 3 year guarantee factors, such as age, geography, alcohol intake, body mass index, education and socioeconomic status could not explain this relationship. A smaller study showed that the risk of converting from clinically isolated syndrome (a first neurologic episode caused by inflammation/demyelination in one or more sites in the central nervous system, lasting at least 24 hours) to clinical definite MS is almost doubled among smokers compared to non-smokers. While, in another study of 201 previously-diagnosed
thinkstock/Stockbyte/thinkstock/istockphoto thinkstock/Stockbyte/thinkstock/istockphoto cases of MS, the risk of developing secondary progressive
A3_Liberty_Poster.indd 1 11/11/2011 2:23:42 PM
www.msaustralia.org.au/actnswvic autumn 2012 intouch 35 LIFESTYLE The man who put MS on the ‘back-burner’
John Blades was a truly remarkable person who just happened to live with MS. Here, we reflect on his extraordinary life.
The death of Sydney journalist, musician and radio presenter, John Blades came as a shock to many people. He passed away due to complications associated with cancer only days before Scarlet Road, the documentary movie he starred in, was screened on SBS ONE on John at the 2010 Walkley Awards. 2 December 2011. John was known for his enthusiasm for community radio and experimental music. In 1982, he co-founded and in 1990 two walking sticks. Finally and reluctantly, I experimental music group The Loop Orchestra described moved into a manual wheelchair in 1993. as ‘Australia’s most enduring experimental music group’. My attitude towards MS was to put MS on the That same year, he was diagnosed with MS. back-burner and get on with my life rather than letting MS John’s involvement in film and radio made a real impact take centre stage. I realised on one hand that I had MS but on the lives of people with MS and people living with that I also had a life to lead. I wanted to control my life rather disability. In 2010, he won one of Australia’s top journalism than allow MS to control me. prizes at the Walkley Awards for his documentary about Between 1985 and 1987 I did a Masters of Engineering sexuality and disability, The Too Hard Basket. He also Science part-time at the University of NSW. I went against won the 2010 Human Rights Award for ‘radio program the advice of my neurologist who believed it might of the year’ and the Asian Broadcasting Union Award for exacerbate my condition. I was not going to let any doctor the program. As a result of these accolades, John was or MS stop me from doing what I really wanted to do. And interviewed by the media, an honour that he was always I am very pleased that I was determined because I was aware allowed him to promote the concerns of people rewarded in 1987 when I received a high distinction and living with MS. ‘Thesis of the Year’. John will be remembered as a wonderful story-teller, In those years before acquiring a walking stick, I really a talented journalist and musician, and a dedicated struggled to and from lectures on my tired legs after a busy advocate for people with MS. He was also immensely day in the engineering office. I did this twice a week for three grateful to his brother, Bruce, who was his carer and his years. I was obviously suffering from MS fatigue. If I had let greatest supporter. John was able to accomplish such a fatigue stop me I would not have achieved anything. I broke lot in his life because of Bruce’s dedication and his own the MS barrier and pushed it out of the way, which you have positive attitude. to do in order to live your life and achieve your goals. As a tribute to John’s amazing spirit, we have republished an extract from an article he wrote which Overseas travel was published in the Autumn 2008 issue of Intouch. In 1989 I had the opportunity to go overseas to present a Here is the advice John gave to others living with MS. paper at an international structural engineering conference in Portugal. It was the first of three overseas trips presenting Take charge of your MS and finally co-presenting papers at international structural I was 22 when I was diagnosed with MS. My mother had engineering conferences. I travelled on my own, hiring MS although she was only mildly affected. wheelchairs when necessary. The progress of my MS was such that during the 1980s In 1991, on a solo visit to five European cities, I even went the nerves that control the muscles in my legs became up the Eiffel Tower in a wheelchair which I had hired in Paris. more and more damaged. In 1988 I got one walking stick These trips were plagued by MS fatigue and the ugly side
36 intouch autumn 2012 www.msaustralia.org.au/actnswvic LIFESTYLE
‘He confronted and overcame his complex problems’ Dr Gary Fulcher, Senior Clinical Psychologist, MS Australia – ACT/NSW/VIC, knew John Blades well. Here, he reminds us of John’s inspiring physical Gary Fulcher and emotional courage. collected the 2010 Human Rights Award for John.
In every tribute to John he is recognised and praised with the therapies enthusiastically and worked hard for his high level of involvement in life and his ‘never to overcome the psychological stressors and demons. give up, never surrender’ attitude. These qualities And, in this way, he succeeded so much that he were real and helped John to achieve the great was highly productive and full of life right up until his things he did. But I know John would be happy death from cancer. with me explaining that he, like most people with John’s determination and efforts to overcome, MS, had scars not just on his myelin, but on his not only the physical challenges of his MS but his psyche as well. psychological and emotional challenges, were another He even went through a very dark period when part of his inspirational story. he was not sure whether he even wanted to live. But The way he confronted and overcame his complex John, again like most people with MS, was smart. problems is a great template for other people with And he was courageous. And he had that ‘never give MS to follow. John sought out and wholeheartedly up, never surrender’ attitude. used the advice from professionals and support from So, when John experienced his psychological his friends. So armed, he was able to embrace and symptoms he sought help from both a psychiatrist conquer his challenges and live life to the fullest. and a clinical psychologist. Moreover, John engaged Vale, John; I’ll miss you. of MS – bladder and bowel accidents. But you must not give in. You must push the envelope to achieve your goals. I pushed through the fatigue and you can easily dry off after bladder accidents and clean up after bowel accidents and Bendigo wear pads or whatever is necessary but do not let them stop you from doing things. When I moved into a wheelchair in 1993 my landscape Community changed forever. In 1994, I was invited to work on a feature ® program at the ABC’s Radio National. It was the first of Bank Branches six feature programs I worked on for Radio National. I did this in conjunction with very long days working as a bridge engineer. I had to contend with MS fatigue and bladder and has proudly donated bowel accidents. But you take all this on the chin. $70 million Moving beyond limits My attitude has always been to do what I could until I could to Australian communities, not do it anymore, and then do something else but never supporting organisations such as ever give up. Life is too short. So it was with walking; I MS Australia in the ACT walked until I could hardly put one foot in front of the other, I went bushwalking in the Victorian Alps (which I loved) until I was falling over. I went swimming at the beach until I could not get myself out of the water without help. I also turned pages with my fingers until it was taking me 15 minutes to turn a page. I love reading and so I got a head pointer for turning pages. I drove my car, my main vehicle (literally) of independence and mobility until it was unsafe to do so with my legs and then rather than give up driving I acquired hand Community Bank® Branches controls in 1993. I drove my car with my hands until 1997 Calwell, Jerrabomberra & Wanniassa when it was unsafe to turn the steering wheel and in 1997 I had my driving licence removed. It’s a sad day when they cut the corner of your driver’s licence.
www.msaustralia.org.au/actnswvic autumn 2012 intouch 37 LIFESTYLE
A new chapter the start of another chapter where I would explore much I was in a wheelchair in 1993 and through that decade my more of my cultural interests in the arts, music and radio. legs continued to be affected. Transferring was more and more difficult and also the nerves that control the muscles in Using taxis my arms began to be affected. When I stopped driving and working they were large blows. So simple functions like turning the steering wheel of But I would not let anything defeat me and the more MS the car, writing, turning pages and feeding myself became affected my body the stronger my determination became. increasingly difficult. For this reason my efficiency in the After stopping driving I started my new life of taxi transport. workplace dropped and I was asked to stop working. I It took some adjusting but it was much more relaxing and decided this would be the end of one chapter of my life and far less death defying. I have had four regular taxi drivers and they have been a wonderful support. I recommend At work in the that everyone with mobility problems latch on to a radio studio. regular taxi driver.
The internet In 2002 I started using a voice-activated computer and it totally transformed my life. It pulled me out of a hole of depression. I’m in touch with hundreds of people all over the world through email and I use the internet for music and arts research and word processing for my radio show scripts. It really opened up a whole world to me.
A rich social life I also lead an active life. This year [2008] I went to 12 films at the Sydney Film Festival for which I organised my own access and transport. I’ve been to live shows such as Barry Humphries and Little Britain this year. I also go to restaurants, the Opera House, art galleries, the Royal Multiple Sclerosis Botanic Gardens and many films on my own. Recently I went to two films at which I was the only one in the cinema. Clinical Study Opportunity Where is everyone? Understanding how cognitive changes On all my outings I hardly ever see anyone in a wheelchair impact on coping ability, mood and and never anyone with a chin control or walking sticks. quality of life in multiple sclerosis Where is everybody? You must get out and leave MS on Do you have relapsing-remitting or secondary progressive MS? the back-burner. We live in a very wheelchair accessible city The aim of this study is to assess how cognitive changes that (except for old multi-storey buildings). There is no excuse for affect aspects of planning and problem-solving impact the not enjoying life. ability to cope with stressors and difficulties. It will identify whether cognitive changes have an effect on aspects of mood, such as levels of depression and anxiety, and/or quality of life. Venturing beyond our comfort zone The information gained will assist with future development I have met several people with MS who regard themselves of programs and management strategies that provide better support for people with MS experiencing such difficulties. as ‘sick’ and their lives are in two parts; before they became What is involved? ‘sick’ when they lived an active life and after becoming ‘sick’ This study is open to residents of Victoria. It will require one when they live a quiet, sheltered existence chained to MS morning or afternoon of your time (approx. 3 to 4 hours), where a with fatigue and fear of bladder and bowel accidents. researcher will visit you in your home (or at an external hospital/ University of Melbourne premises if preferred). You will be I have never thought of myself as being ‘sick’. I believe the asked to perform a number of computer-based and pencil and word is like a straitjacket which stops you from enjoying life. paper tasks, that assess aspects of thinking, and to complete Try to avoid using the word ‘sick’ as an excuse for not doing some questionnaires. All information will be kept private and confidential. things or participating in life’s rich tapestry. We have to move outside our comfort zone in order to live life. Don’t waste For further information please contact: your time being obsessed with your MS. Lisa Grech, 0410 947 444 I essentially cannot move anything below the neck but I [email protected] assure you there is a lot of life to be lived from the neck up. If I can do it with my level of disability, anyone can. Where there’s a will there is most definitely a way. So, live life to the fullest, break through the MS barriers, do not give in and, above all, take charge of your MS. n
38 intouch autumn 2012 www.msaustralia.org.au/actnswvic WHAT’S NEW: MS-RELATED RESOURCES Check out the latest resources, sourced by the MS Library.
eBooks As mentioned in the Winter 2011 issue of Intouch, the MS Library has a small collection of eBooks which are available for loan and can be accessed if you The brain that Blindsided: Lifting MS clinical trials and have a computer and changes itself a life above illness research in Australia internet connection. By N Doidge By R Cohen By Dr L Melton eBooks can be read Scribe Publications HarperCollins Publishers Webinar: www.msra.org.au/ on either a computer, Psychiatrist and researcher Richard Cohen, who was ms-clinical-trials-and-research- australia eReader or smart phone. Norman Doidge describes diagnosed with MS when In this presentation, However, as with lots of the stories of scientists, he was 25, writes honestly Dr Lisa Melton, Research technology, not all eBooks doctors and patients who about the challenges Development Manager are compatible with all have been involved in the involved in living with MS at MS Research Australia eReaders. The eBooks discovery of brain plasticity, and cancer. Richard’s (MSRA), presents an update that we have purchased or how the brain can experience as a journalist on the MS Clinical Trials are not compatible with change. Contents include: stands him in good stead Network and MS research Kindles and some other • A woman perpetually as he describes the effect in Australia. proprietary eReaders, but falling: Rescued by the of chronic illness on raising One of the goals of MS they can be read on the children and the role denial man who discovered the MSRA is to coordinate majority of other eReaders and resilience have played plasticity of our senses scientists working in the and on computers, iPads in his life. • Redesigning the brain: A area of MS in Australia, and many smart phones. scientist changes brains Richard’s father and and to ensure they are to sharpen perception paternal grandmother also connected and informed eBooks available include: and memory, increase had MS and it was his about each other’s research. • Mindfulness speed of thought, and father, a doctor, who first One of the strategies for dummies raised the possibility of heal learning problems employed by MSRA is to by Shamash Alidina Richard having MS. The • Acquiring tastes and loves: provide funding to young • Yoga tips for diagnostic process was What neuroplasticity researchers; the scientists people with multiple slow in the 1970s, and teaches us about sexual that will be the researchers sclerosis: Quick and relied on anecdotal evidence attraction and love of the future. simple techniques and the results of a lumbar • Midnight resurrections: MSRA’s Clinical Trials to improve posture puncture, both of which Stroke victims learn to Network was set up several and mobility indicated that Richard had move and speak again years ago to encourage by Sue Lee. the disease. • Brain lock unlocked: clinical research within This engaging book Using plasticity to stop Australia, to increase the would be of interest to worries, obsessions, number of patients involved people with MS and their compulsions and habits in clinical trials, and to families, especially anyone • Imagination: How thinking give people with MS the interested in the experiences makes it so. opportunity to access new of a man living with MS. areas of treatment. This fascinating book will be It is the role of MSRA of interest to anyone who is to keep people with MS curious about how the brain and their doctors informed works and its potential to about current clinical trials change itself. and trial results.
To borrow books or for assistance in accessing online resources, please contact the MS Library on (03) 9845 2809 or [email protected]
www.msaustralia.org.au/actnswvic autumn 2012 intouch 39