InTouch Winter 2012 - MS

ISSN 1833-8941 Print Post Approved: PP 255003/08108

Winter 2012

TechTalkInnovative technology to keep you

connected, informed and entertained

MS Readathon: Registrations now openwww.msreadathon.org.au

The Official Magazine of MS Australia – ACT/NSW/VIC www.msaustralia.org.au/actnswvic

Posing for health

Men with MSStrategies and support options

Discover the benefits of yoga

WheelchairetiquetteTips from personal experience

NEW MS Insights:Snapshots of the latest inglobal MS research

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Co-editors: Rebecca Kenyon & Sandra Helou Publisher: Multiple Sclerosis Limited 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

ACT Gloria McKerrow House 117 Denison Street Deakin ACT 2600 Tel: (02) 6234 7000 Fax: (02) 6234 7099

NSW Studdy MS Centre 80 Betty Cuthbert Dr Lidcombe NSW 2141 Tel: (02) 9646 0600 Fax: (02) 9643 1486

Victoria The Nerve Centre 54 Railway Road Blackburn VIC 3130 Tel: (03) 9845 2700 Fax: (03) 9845 2777

MS ConnectTM (information and services): 1800 042 138 (free call)

Regional offices: Visit www.msaustralia.org.au/actnswvic and click on ‘Contact Us’

Privacy Policy: Visit www.msaustralia.org.au/actnswvic for our full policy document

ISSN: 1833-8941

Disclaimer: Information and articles contained in Intouch are intended to provide useful and accurate information of a general nature for the reader but are not intended to be a substitute for legal or medical advice. Multiple Sclerosis Limited is not recommending medical or legal advice and readers must seek their own medical or legal advice as may be appropriate.

Advertising disclaimer: Advertisements are provided to assist consumers to locate and purchase suitable products and services. Multiple Sclerosis Limited does not endorse any one product or service over another, nor do we receive any commission on sale of items. Consumers are encouraged to discuss the options for exchange or return at time of purchase with a particular supplier as Multiple Sclerosis Limited is not liable in the event the product is not satisfactory.

MS Australia – ACT/NSW/VIC is a not-for-profit organisation that has been supporting and helping people with multiple sclerosis (MS) since 1956. Through an extensive network of centres, branches, support groups and health services, the organisation provides specialist programs to people with MS, their families, carers, friends and healthcare professionals. © Multiple Sclerosis Limited 2012

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CARERS

Look out for this symbol for information and articles specifically relevant to family members and carers of people with MS.


Hello there and welcome to the Winter 2012 edition of Intouch. My name is Jim Carroll and I am very pleased to introduce myself as the new CEO of MS Australia – ACT/NSW/VIC.

Since beginning as CEO in late February, I have ‘hit the ground running’, meeting our dedicated staff and volunteers, key stakeholders and, of course, some of you – our valued clients.

I have joined the organisation after an extensive career in the Australian media industry and, for the past 20 years, working in senior management roles in commercial television. Most recently I was Head of News and Public Affairs at Network Ten.

Along the road I have had a four-year period in government, advising the NSW Premier and Minister for Health and Transport. More recently I have also become involved in community organisations, and currently serve as Deputy Chairman of the Australian Science Media Centre and as a member of the Australia Day Council (NSW).

I am honoured to be joining the outstanding team at MS Australia – ACT/NSW/VIC and greatly look forward to advancing the role and profile of the organisation at all levels. I am determined to broaden community understanding of MS and highlight the challenges of those living with the illness.

Securing appropriate funding to ensure MS Australia – ACT/NSW/VIC continues to deliver essential services is a core priority and we will be looking to deepen our engagement with government and the private sector in this area.

The National Disability Insurance Scheme, in particular, is of critical importance to MS Australia and other organisations in the disability sector. I look forward to working with governments to ensure its implementation is as targeted, effective and comprehensive as it needs to be.

On a personal note, my mother-in-law was a person with MS and to witness her daily struggles, particularly in the latter stages, and the devotion of her husband and children was very moving.

I would like to take this opportunity to thank Acting CEO Ken Sharpe who has done a fantastic job of leading the organisation prior to my employment.

Finally, I would like to acknowledge the hard work and dedication of Alan Blackwood, Manager of Policy and Community Partnerships at MS Australia. After almost 11 years, Alan recently moved on from this accomplished role. Alan has made a real difference to the lives of people with MS, working on a number of successful advocacy campaigns. We have been very fortunate to have worked with Alan and we wish him all the best for his next endeavour.

I hope you enjoy reading this edition of Intouch.

CEO’s messageContentsFEATURES10 My Story:

‘It’s all about your attitude’ George Saliba reveals how he went from denying his MS to educating others. We also discuss some of the unique challenges faced by men with MS and strategies to cope.

13 MS Insights **NEW** Snapshots on the latest revelations in global MS research.

14 Cover Story: Technology to stay connected Check out some of the key ‘tech tools’ available to help people with MS stay connected and increase efficiency throughout everyday life. Hear how two people with MS are using technology to their advantage.

MS COMMUNITY23 Community fundraising:

Thank you for your hard work24 Families and carers:

Young carers on Facebook25 MS Ambassador profile:

Meet Paula Allison26 Volunteers in action: Meet those

helping to make a difference28 Support group profile:

Grafton MS Support Group29 Peer support: Training in motion

HEALTH & WELLNESS30 Take charge of your health:

Check out some useful ‘apps’ to help in emergencies, manage your MS day-to-day or track health and medical information

32 A way to healing: The benefits of yoga for people with MS

LIFESTYLE36 Wheelchair etiquette

Humourous yet practical, Bruce Mumford uses his experience to advise others on how to win friends and influence people while using wheels

38 Spotlight on: MS Library

REGULARS5 Your say6 News9 Q&A20 Events35 MS Readathon39 New resources

Jim Carroll CEO, MS Australia – ACT/NSW/VIC

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Rebecca Kenyon Editor

to the Winter edition of Intouch for 2012. Following the reader survey conducted last year, we are pleased to respond to your feedback! Around 30 per cent of you said that you would read Intouch if it were delivered online, so we are now giving readers the opportunity to opt in to receive the magazine via email. Not only will you be able to access the magazine faster than ever before, this also helps reduce our impact on the environment and the magazine’s production costs, allowing us to redirect these vital funds to other essential services for people with MS.

If you would like to opt in to receive Intouch via email, please fill out the form on the cover sheet provided in your mail package or contact MS Connect on 1800 042 138 or email [email protected]

This new form of delivery is very relevant to the theme of this edition – ‘Technology to stay connected’. In this issue we look at the ever-growing world of technology and how, in particular, it can help people with MS remain active, connected and engaged in all aspects of life.

This issue, I am also delighted to introduce to you my co-editor, Sandra Helou, who will be assisting with the production of Intouch. Sandra has been employed by MS Australia – ACT/NSW/VIC for almost four years, predominantly editing and producing many of our valuable education resources and corporate publications. She will continue working in this capacity, as well as on Intouch.

Both Sandra and I look forward to working together on the magazine moving forward. To contact either of us, please email [email protected]. We value your ideas and feedback, so please let us know what you think about the magazine and what you’d like to see more or less of. If we publish your letter, you’ll even receive a small gift from us to say thank you. Happy reading!

WelcomeEditor’s note

Follow us online

www.facebook.com/MSAustralia http://twitter.com/MS_Australia www.youtube.com/MSSocietyAustralia

Win a BMW F30 320i Sedan or a World Wonders Tour for 4 people!

Win first prize in our latest Art Union and you can choose between driving away in a new BMW 320i Sedan, valued at $60,000, or taking a 32-night World Wonders tour visiting Rio de Janeiro, Chichen Itza, the Grand Canyon, the Vatican, Petra, Stonehenge and the Great Wall of China.

Join Club MS to enter our exclusive draw to win 2oz of GOLD BULLION

The odds of winning are brilliant and tickets start from as little as $15. Buy yours and help MS Australia – ACT/NSW/VIC provide vital support and services to people living with MS!

The competition is drawn on 29 June. Giving Life Back

For more information and to purchase tickets, visit www.msraffles.org.au or FreecallTM 1800 287 367

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Eat well, live wellWhen diagnosed with primary progressive MS in 2009, I really needed to lose some weight. I had tried exercise and various diets without success. Then this year my son-in-law suggested I try the CSIRO Total Wellbeing Diet and it has been a great success. Both my wife and I have followed the diet; my wife has lost 4kgs and I have lost 8kgs, with more to go. The diet makes a lot of sense; it uses all food groups, seafood twice a week, comes with tasty recipes and includes suggestions for exercise. We still have alcohol occasionally, go out for a cappuccino, and eat as many fruits and vegetables as we like.

Of course I feel much better already. I can get into clothes that I could not wear before and, best of all, moving a lighter body around helps with managing MS fatigue.N Chapple, via email

Help for trigeminal neuralgia Now aged 52, I was diagnosed with relapsing-remitting MS in 1992. I am fully ambulatory, still working and able to do most things I want to do (perhaps not as well as I would like, but not too badly either).

One of my biggest problems with MS has been my battle with trigeminal neuralgia (TGN). It is something that has caused me severe pain since 1999. I searched for something that could relieve this pain and make my life more comfortable; I tried a lot of things to no avail. However, this symptom was so painful and debilitating that I was determined to find relief. I kept researching different things and persevering with my doctors and last year a small miracle occured (well, a big one for me) – I was finally prescribed a mediction that has worked.

I wanted to let TGN sufferers know about this medication. It has been around for quite a long time, albeit to treat a totally different problem. Maybe it could help them too, maybe not, but it is definitely worth trying. I seriously and ‘scientifically’ tried many things over 10 years. My message is, keep talking to your doctor and trying new things. This medication has completely changed my life. Ann, via email

Your sayWrite to us at [email protected] or post your letter to ‘Intouch’, PO Box 210, Lidcombe NSW 1825

Thank you for sharing your stories, tips and feedback.We’d love to hear more!

Write in to WIN!Keep your feedback and stories coming in! Next issue’s theme will focus on the different types of MS and emerging treatments.

Each reader to have their letter published will win an

organic tea and chocolate indulgence pack.

What about progressive MS? I have had MS for some 34 years and I am still able to get around at home using a four-wheel walker.

Unfortunately the research energies are weighted heavily on relapsing-remitting MS, with little feedback on what developments have occurred with primary progressive MS. As you would be well aware, we live in hope and therefore I would appreciate some feedback on just where we are at with this type of MS.J Elliott, via email

Editor’s note: Thank you for your letter. We have received similar feedback via the Intouch reader survey conducted last year. As such, the Editorial Committee is committed to providing all readers with relevant information and updates regarding MS treatments and research. The next issue of Intouch will focus on the ‘Different Types of MS and Emerging Treatments’, which I think you will find particularly interesting. We have also included a new regular section in the magazine, MS Insights (p13), which will profile some of the latest MS research findings from around the globe, relevant to all types of MS. Finally, we have included some great case studies this issue (see My Story, p10, and the Cover Story, p14), which profile the MS journey of those living with progressive forms of MS.

We will continue to balance the content of Intouch, so that all readers find the magazine relevant, practical and informative.

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NEWS

MS Melbourne Cycle successMore than 4,300 cyclists took to the streets of Melbourne on Sunday 25 March for the sixth MS Melbourne Cycle.

Keen cyclists set out from 7am to tackle the 46km course, which included the challenging climb over the West Gate Bridge. The 15km Fun Ride was popular among families who came with tag-along bikes and kiddie trailers in tow, adding to the warm atmosphere on the day.

“The event ran smoothly, the weather was kind to us despite some early drizzle, and everyone took part in the ride with great humour and enthusiasm,” reports event organiser Heather Rendell. “Seeing the fundraising tally rise creates a real sense of achievement for our fundraisers and their sponsors.”

A big thank you and congratulations to all our participants, fundraisers and teams. Top fundraisers on the day were Abby Johnson ($45,039), Peter James ($26,677) and Erin Ede ($12,367). Top fundraising teams Lion Riders ($88,775), CFSGAM ($54,680) and Swan Hill Supporting MS ($45,109) must all be acknowledged for their amazing efforts.

Every little bit counts, and we are very pleased to announce that as fundraising continues post-event, close to $745,000 has been raised to date. We are well on track to reaching the fundraising goal of $750,000, which will make a significant difference to those living with MS.

MS Australia – ACT/NSW/VIC would also like to thank all of our dedicated volunteers who helped make this event possible. For more information on the event and this year’s fundraisers, visit www.msmelbournecycle.org.au n

In brief:

MS Australia – ACT/NSW/VIC in Victoria has been delivering Commonwealth Government-funded employment services for people with MS since the 1990s. Currently, this is the only specialist employment service for people with MS in Australia. On 20 February 2012 the Department of Education, Employment and Workplace Relations (DEEWR) announced the beginning of a tender process that potentially enables the expansion of this service into the ACT and NSW. MS Australia – ACT/NSW/VIC will be submitting tenders to expand the current Victorian-based service and, if successful, a specialist MS Employment Support Service (ESS) will be available to people with MS in the ACT and NSW commencing March 2013.

We will keep you updated as more information becomes available. n

Expansion of employment service

Top fundraising team Lion Riders (Colin Watson Motors) celebrate a successful and enjoyable day, riding to support people living with MS.

Revised national medical standards for driver licensing The driver medical standards Assessing Fitness to Drive 2012 was launched on 1 March and has been revised to reflect current medical knowledge and the current transport environment. The standards are used by health professionals and driver licensing authorities to support consistent management of drivers with respect to health conditions that may affect fitness to drive and licence status.

Supporting information for drivers and details of the changes made in the recent review are available at www.austroads.com.au/images/stories/AFTD_Driver_Factsheet_WEB.pdf

New MS Community Shop in BendigoWe are pleased to announce the opening of our 11th MS Community Shop in Bendigo, Victoria. We are excited about the new store that was opened in May and would appreciate any quality donations of goods, including clothes and housewares.

For more information, contact the Retail Operations Manager at our Melbourne office on (03) 9845 2700.

Carol Cooke to represent Australia at the ParalympicsMS Ambassador, and creator of the 24 Hour Mega Swim, Carol Cook will compete in the Paralympics as part of the Australian cycling team.

We would like to congratulate Carol on this fantastic achievement and wish her all the best in the lead up to London and for the big event.

Go for gold Carol!


News from MSAC

It has been 20 years since first being diagnosed with MS, and over that time I have had many interactions that have assisted me to deal positively with the challenges presented by this condition.

Throughout my MS journey, I have benefited greatly from the direct support of so many – supportive family, loyal friends, considerate work colleagues, clever and compassionate medicos and many others who have been touched by MS. This support has been crucial to my wellbeing and ability to achieve life goals in spite of the constraints inflicted by MS.

Often, I have been able to enjoy strong, face-to-face connections with others that have helped me to learn and gain the knowledge and support that I have needed to optimise my situation, despite the progression of my MS. At times, however, I have also gained insight into how the progression of MS can potentially lead to isolation – physically and emotionally.

Through my participation with MSAC and my broader interaction with MS Australia, I have seen how effectively others, often faced with greater constraints than my own, have been able to seek and gain support. MS Australia – ACT/NSW/VIC provides many forms of support. Many are excellent face-to-face opportunities that enable clients to have direct contact with staff and others experiencing MS first hand. Increasingly, there is also a variety of emerging technological options for those who are not as capable of meeting in person, due to physical or geographical barriers, to get and stay in touch.

Please let us know at the MSAC web page, Facebook page or call us with your experiences and ideas on how you have (or would like to) use technology to stay in touch. We can then pass your feedback on to the Board to further enhance your connectedness with the organisation going forward.

By Andrew White, Chair of the MS Advisory Council

Email: [email protected] Telephone: (03) 9845 2794

The Federal Government has introduced further reforms to the Disability Support Pension (DPS), allowing people with disabilities to work twice as many hours.

The Social Security and Other Leigislation Amendment (Disability Support Pension Participation Reforms) Bill 2012 introduces new participation requirements for Disability Support Pension (DSP) recipients who have some capacity to work.

From 1 July this year, the latest Bill introduces rules that allow DSP recipients to work up to 30 hours a week and continue to receive a part-pension, subject to income and assets testing. The Government says that this change will give people with disability the security they need to test their ability to work more hours, without worrying about losing their disability pension.

The Bill also introduces new rules from 1 July that allow DSP recipients who have a severe and permanent disability, and no future work capacity, to travel overseas for more than 13 weeks while retaining access to their pension.

The Government has published a fact sheet about these changes at: http://resources.fahcsia.gov.au/budget/2011-12/FaHCSIA_DSP_web.pdf. To find out how these changes may affect your personal circumstances, visit your local Centrelink office or call Centrelink on 132 717. n

New rules allow people on Disability Support Pension to work more hours

Tower to transform lives for people with disabilitiesIn May, the Federal Government committed to the construction of a landmark tower in the heart of Melbourne’s CBD. Known as the ‘Cairo’ building, the 32-storey construction will include retail and commercial space, as well as more than 220 residential apartments to allow affordable housing and accommodation for people living with a disability.

Jim Carroll, MS Australia – ACT/NSW/VIC CEO, says the development would transform lives. “The new building will be a place for young people with disabilities like multiple sclerosis to live in the centre of the CBD – the first project of its kind in the country. This is exactly the sort of place younger people with a disability should be able to live – not in nursing homes.”

The Government’s announcement comes after the Australian Institute of Health and Welfare reported that the national Younger People in Residential Aged Care initiative had assisted young people with disabilities to successfully move to community-based care.


NEWS

CCSVI update

At the forefront of health reformCongratulations to Robert Pask, Coordinator of the National MS Advocates Program, on his appointment to the Board of the Consumer Health Forum Australia (CHF). CHF is the peak organisation representing the interests of Australian healthcare consumers.

As a key advocate on health reform, Robert also recently contributed to a blog post about the importance of eHealth records. In 2009 the National Health and Hospitals Reform Commission recommended that, by 2012 every Australian should be able to have a personal electronic health record that they would own and control. “If done properly, eHealth and the use of a personally controlled health record has the capacity to significantly improve health outcomes, reduce medical mistakes, save lives, improve safety, save time and money, and provide health consumers with much greater control and interest in their own health care,” said Robert. Read the full post at http://blogs.crikey.com.au/croakey/2012/04/13/ehealth-records-too-important-to-muck-up/

Carer news

Government campaign to support carersSenator Jan McLucas, Parliamentary Secretary for Disabilities and Carers, recently announced that the Australian Government will dedicate $2.6 million to a national Carer Awareness Campaign and a series of festivals for young carers to provide them some time out from the demands of their caring roles. For more information and updates visit www.fahcsia.gov.au/

FlexiRest funding continuesFlexiRest has been successfully providing support to family members and carers of people with MS in NSW for almost five years, thanks to block funding from the NSW Department of Ageing, Disability and Home Care (ADHC). Run in collaboration with Muscular Dystrophy NSW and Motor Neurone Disease (NSW), MS Australia – ACT/NSW/VIC is pleased to announce that recurrent funding has been approved by ADHC for the next three years, allowing this vital program to continue. If you live in NSW and would like to know more about FlexiRest, please contact MS Connect on 1800 042 138.

CARERS

On Sunday 8 April, Channel Seven’s Sunday Night program aired a story about former lead singer of the Divinyls Chrissy Amphlett and her battle with MS. The story also featured information about chronic cerebrospinal venous insufficiency (CCSVI).

A procedure known as percutaneous venoplasty is used to open up narrowed veins in the neck that carry oxygen-depleted blood, in the condition known as CCSVI. The program was of great interest to many with MS as some people, such as the rock star who has undergone the procedure, have reported benefits.

MS Australia has actively encouraged research into CCSVI in Australia and several bodies around the world are currently researching percutaneous venoplasty to determine the safety and efficacy of the procedure. We eagerly await the latest evidence and specialist opinion from research taking place around the world to help shape our policies and, in particular, our advocacy on this important issue for people living with MS.

MS Australia is committed to minimising the impact of MS on the lives of Australians and we keep an open mind to potential new treatments. MS Australia and MS Research Australia will continue to update people with MS on the latest research and developments in CCSVI. People with MS seeking any form of treatment should consult their doctor.

To learn more about the worldwide CCSVI research effort, visit www.msra.org.au n

Our booklet Your Future in Your Hands is now available and provides an overview on how to arrange your will, powers of attorney and guardianship.

The booklet contains valuable information on will preparation including, how to leave a bequest to MS Australia – ACT/NSW/VIC in support of our efforts to find a cure for MS and provide current and future care to those affected by MS.

To order a free copy please contact our Planned Giving Officers on 1800 443 867. n

MS bequest booklet now available

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Realise your dreams!Applications for the 2012 Go for Gold Scholarships close Friday 6 July 2012.

Visit www.mssociety.org.au/go-for-gold.asp for more information and to download an application form, or call 1800 042 138.

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If you have questions about MS-related concerns, please contact MS ConnectTM on 1800 042 138.

Q&A

I’ve been hearing and reading about the government’s proposed National Insurance Disability Scheme (NDIS) but I’m not really sure how it will work or how it will affect/benefit me as someone with MS (if at all)? Can you help explain this and when it’s likely to come about?

The Federal Government is planning to implement a scheme – the National Disability Insurance Scheme (NDIS) – to ensure that all Australians living with a disability get the support they need and deserve. It will mean that essential support like equipment, care and other services designed to help you improve your quality of life will be funded by the Government (and managed by a National Disability Insurance Agency).

Your MS-related, health and lifestyle questions answered.

The NDIS is a tax-payer funded insurance scheme that will provide assistance to people who have or will acquire severe or lifelong disabilities at any time, from birth to age-pension age.

The Government has committed $1 billion over four years to establish the NDIS, with the Prime Minister recently announcing that the scheme will begin in July 2013, in four pilot locations. It is said that this will help around 10,000 people with significant and permanent disabilities – a figure that will double by mid-2014. The initial locations will be determined in consultation with the states and territories, which have all agreed shared responsibility for the fundamental reform of disability care and support.

While we don’t have a lot of detail about how the scheme will work, our organisation is working hard with its community partners to ensure it will benefit people living with MS. We will keep you updated. In the mean time, visit www.ndis.gov.au n

At only $1,990 the NEW Monarch Literider is the smartest, most affordable compact powerchair on the market.

Ideal for indoor use, this highly manoeuvrable, battery powered chair is tough enough for moderate slopes outdoors and capable of carrying a maximum load of 125 kg!

Designed to be transported in the boot of a car the Literider is easily dismantled and just as easily reassembled when you reach your destination.

Visit a Scooters Australia showroom in Sydney, Melbourne, Brisbane, Adelaide, Perth, Canberra and Regional Cities or call 1300 622 633 to arrange a FREE home test drive from your local dealer.

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My story: ‘It’s all about your attitude’George Saliba has come a long way since being diagnosed with MS 14 years ago. He reveals how he went from denying his MS diagnosis to educating others about the disease. By Rebecca Kenyon

George Saliba was working for an architectural firm when his morning ritual of walking up the stairs to his second-floor office was suddenly interrupted. “I couldn’t place one leg in front of the other,” he recalls. Putting it down to ‘a big weekend’, George forgot about it until one day he realised the coffee in his cup was trembling but his hand wasn’t moving. He decided it was time to visit a doctor.

Although George’s GP believed it was stress-related, the doctor sent him for an MRI to rule out anything serious. The test came back showing lesions on his brain and George was diagnosed with MS. He was 31.

“The news hit me suddenly,” admits George. “I did a bit of research about the disease but I mostly went into denial, because I felt fine. After a couple of years, though, fatigue started

to set in. I was otherwise young and healthy, so I listened to my body and tried not to push myself. I was still living a very normal life.

“It was only about five years ago when I went on a holiday to Cambodia and Vietnam that I had a big relapse. I developed vertigo and I really struggled with my balance and walking. Basically, I walked onto the plane to go overseas, and then hobbled off the plane using a walking stick when I arrived back in Australia. Unfortunately, the MS has since progressed to a point where I use a wheelchair most of the time.

“This was a difficult time because everyone could now see there was an issue. Previously, the fatigue was basically invisible. I didn’t try to hide my MS but I didn’t go out of my way to make it very public either.”

George created lasting memories during his recent trip to Hawaii.

Accepting changeFortunately, prior to his ill-fated trip, George had begun to accept his MS and become more proactive in managing his symptoms. “I attended an MS retreat, which helped me to better understand MS and what I may have to deal with. I learnt meditation, which I practise every day; I watch what I eat; I take supplements and I go to hydrotherapy and the gym once a week.

“I live on my own and run my own architectural design business (studio4design) from home. I’m also studying to become an ‘access consultant’ and to start a new business called Access Mobility Solutions. The qualification will allow me to audit new and renovated buildings to ensure they comply with Australian standards and relevant codes for access to premises.


My story: ‘It’s all about your attitude’

Would you like to share your story with other people

living with MS? Contact the editor on

(02) 9646 0725 or email [email protected]

“I keep pretty active but I work at my own pace, and I receive amazing support from family and friends. I’ve always considered myself very fortunate. The mantra I live by (and I have on my wall at home) reads: ‘I cannot control the fact I have MS, but what I can control is my attitude’.”

Educating othersHaving taken the time to accept his MS and develop a positive attitude toward managing it, George now sees himself as an educator. “I didn’t know much about MS before I was diagnosed, but now I’m quite happy to talk about it, especially to those who don’t know anything about MS. It helps to broaden the understanding of the disease.”

George has been a Peer Support Volunteer with MS Australia – ACT/NSW/VIC for more than two years, which he says is incredibly rewarding, and he has also participated in the MS Walk and Fun Run for the past four years. Camp Saliba started off with five members raising $1,000 four years ago and has grown to 40 members who raised an amazing $20,000 in 2011. “We’re hoping to better that this year,” says a determined George.

Perhaps George’s greatest victory, though, was getting back on an aeroplane. “It took me a few years to build up the courage to travel again, especially with the wheelchair, but last year I travelled to Hawaii with my sister. It was easier than I thought and we had a fantastic time. It was nice to replace that bad memory of travel with a really positive and happy experience. I’m now planning my next trip!” n

Men & MSMen can often face unique challenges when accepting an MS diagnosis, and in managing their disease. Dr Gary Fulcher, Senior Clinical Psychologist at MS Australia – ACT/NSW/VIC, suggests some useful strategies and support options for men living with MS.

While it is well known that approximately three times more women have MS than men, there are two very pertinent and scientific facts worth noting when it comes to men and MS:1. MS tends to occur later in life for men1; and2. Men tend to experience a somewhat worse and more progressive

disease course. 2

We don’t know why this is but studies are underway to look into the possible connection between the male hormone testosterone and MS.

While a vast range of useful information and resources exist about MS, living with MS and managing symptoms, not many resources are specifically for men with MS. A general internet search may produce many articles related to sexual dysfunction as an MS symptom for men, but this symptom is not necessarily more prevalent in men than in women.

However, men do often have a different experience when managing their disease. This is mainly due to the emotional and psychological challenges they face when it comes to accepting the disease, and the life change or adjustment it can represent.

In today’s society where both men and women are often income earners and value independence, it is often the case that men still see their major role as earning an income and are less likely than women to consider a second occupation or part-time work.

When MS interrupts these traditional gender roles (especially when the MS progresses quickly and men become less independent quite rapidly), many men struggle to accept the change. They also tend not to be very good at communicating their concerns. Men rarely talk about their problems, let alone explain how they feel or ask for help. This can lead to frustration, anger, anxiety and depression which can all have dramatic consequences, particularly on relationships and families.

Men often cope with these challenges by over-working – keeping themselves busy and distracted from what is really going on, and ‘working hard while they still can’. For all people with MS, over-doing it can lead to stress and fatigue which can enhance MS symptoms. Alternatively, men may look for ways of coping that are unhelpful or self-destructive.

So where can men get suitable support?To begin addressing these challenges, men will first need to realise they are not alone. Many men around the world live with MS – comedian Tim Ferguson and 2011 Australian of the Year Simon McKeon have MS, as do the many everyday Aussies we regularly profile in this magazine. While each is on their own MS journey, do realise that they too will experience the same issues; the same challenges, physically and emotionally; and there is help available.

The biggest hurdles have to do with accepting that you have MS and acknowledging that you have concerns that you may not know how to


cope with. As George Saliba learnt, educating himself (and now others) about MS helped him to accept the disease and take a more positive and proactive approach to managing it.

Your support networks will always play an important role – health professionals, friends, family and colleagues.Your GP is the first port of call. As they are an objective medical practitioner, you can discuss any health-related issue with them. They will be able to refer you to the necessary supports, such as through MS Australia – ACT/NSW/VIC or other local services.

Throughout this and every edition of Intouch you will read about the services available through our organisation, which are equally applicable to men and women. Whether you seek information and education, physiotherapy, exercise groups, psychological support, respite, peer support, employment assistance (and much more), MS Australia – ACT/NSW/VIC has the expertise and knowledge to support all people with MS, their family members and carers.

References:1. Vlahiotis A, et al. Gender differences in self-reported symptom awareness and perceived ability to manage therapy with disease-modifying medication among commercially insured multiple sclerosis patients. J Manag Care Pharm. 2010; 16: 206-16.2. Schoonheim MM, et al. Gender-related differences in functional connectivity in multiple sclerosis. Mult Scler. 2012; 18: 164-73.

Men’s Health Week is an international celebration of the causes and factors behind the state of men’s and boys’ health in Australia.

As a bloke, there are some specific things about your environment that directly impact on your health. This Men’s Health Week is exploring the role of environments (or ‘environMENts’!) on men’s health. Take a look at the Men’s Shed idea and right there, you have an environment for health.

There is plenty to explore and all of it is about engaging blokes, families and friends with men’s health. Find or register an event happening near you during Men’s Health Week at www.menshealthweek.org.au

• MS Australia – ACT/NSW/VIC: To access our services, call MS Connect on 1800 042 138.

• Men’s Shed: With more than 400 ‘sheds’ across Australia, a Men’s Shed provides men with a safe and busy environment where they can find old-fashioned mateship. Visit www.mensshed.org or call 1300 550 009.

• Beyond Blue: A good starting point for advice on where to get help, and to access information about depression, anxiety and related disorders. Call 1800 224 636 or visit www.beyondblue.org.au

• Men’s Health Australia: A great source of information for and about the social and psychological wellbeing of men and boys. Visit www.menshealthaustralia.net

• Andrology Australia: Raising awareness of male reproductive health disorders and their associations with chronic disease. Subscribe to The Healthy Male newsletter at the ‘Publications’ section of the website: www.andrologyaustralia.org

• Men & Sex, by the UK MS Trust (2011). A book for men with MS who are concerned about sexual issues. Download a copy from the ‘Publications’ section of the UK MS Trust website: www.mstrust.org.uk

• Blindsided: Lifting a life above illness, By R Cohen, HarperCollins Publishers (2004). One man shares his story about living with MS. To borrow from the MS Library, email [email protected]

Useful contacts and resources

Men’s Health Week: 11–17 Junewww.menshealthweek.org.au

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Men will first need to realise that they are not alone

While you may not feel comfortable opening up to your partner or direct family, it’s important to find a friend, relative or colleague who you can confide in. If you would like an understanding ear from someone who is going through a similar circumstance, why not try our Peer Support Program? We can link you to MS support groups, one-on-one telephone support and/or our online peer support communities.

Given the emotional and psychological challenges many men with MS face, accessing the services of a clinical psychologist can be extremely beneficial in helping you to work through these issues. We have also suggested some additional contacts and useful resources in the box below. n


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In April, scientists from RMIT and Monash Universities announced a discovery that shows blocking a specific protein may have the ability to act as a ‘hand brake’ to the progression of an experimental model of MS.1

The method used to form the block has already been approved – for the treatment of other disease conditions – by the US Food and Drug Administration and Australia’s Therapeutic Goods Administration. This should mean that clinical trials

A study involving 800 women, conducted by the Murdoch Children’s Research Institute, claims that the risk of getting MS may be related to the number of pregnancies a woman has over her lifetime.1

It is already well known that there is some link between pregnancy and MS. This study, which forms part of the AusImmune Study partly funded by MS Research Australia (MSRA), was able to confirm that those women with at least one child had about half the risk of developing early MS symptoms, and women with three children had a 75 per cent lower risk of early MS symptoms.

It is not known what factors have contributed to the new finding, but it will certainly add to the understanding of the cause of MS.

MSRA is currently supporting a project aimed at studying MS before and after pregnancy. Researchers hope

Having children may reduce risk of MS

Intellectual enrichment and MSA number of recent studies have confirmed (and extended) the ‘cognitive reserve’ hypothesis, which states that lifetime intellectual enrichment (e.g. ongoing education, reading and hobbies) lessens the functional negative impact of brain disease on cognition (memory and thinking). While much research has focused on Alzheimer’s, a study by Bonnet et al (2011) examined this theory on patients with MS.1 It concluded that intellectual enrichment can help protect against disease-related thinking and memory problems in people with MS.

Sumowski et al (2012) extended on these findings to examine the hypothesis on patients with secondary progressive MS (SPMS). Again, it was found that intellectual enrichment can help protect people with SPMS from cognitive impairment.2 This suggests there may be benefits for people with MS who remain as cognitively and intellectually active as possible. n

1. Bonnet M, Deloire M, Brochet B, Sumowski JF. Intellectual enrichment lessens the effect of brain atrophy on learning and memory in multiple sclerosis. Neurology 2011;76(9):8472. Sumowski JF, Chiaravalloti N, Leavitt VM, Deluca J. Cognitive reserve in secondary progressive multiple sclerosis. Mult Scler. 2012 Mar 2 [Epub ahead of print]

MS Insights Snapshots on the latest revelations in global MS research. NEW!

1. Petratos S et al. Limiting multiple sclerosis related axonopathy by blocking Nogo receptor and CRMP-2 phosphorylation. Brain 2012 Apr 28. [Epub ahead of print]

(once they start) will be fast-tracked.The research was a collaboration

between scientists from the University of Toronto and Yale University in the US, with major funding from the National Multiple Sclerosis Society (USA) and partial funding from MS Research Australia.

More information is available at www.msra.org.au n

Possible ‘hand brake’ solution to MS progression

this may lead to new strategies in the treatment of MS.

To find out more information, visit www.msra.org.au n

1. Ponsonby AL et al. Offspring number, pregnancy, and risk of a first clinical demyelinating event: the AusImmune Study. Neurology 2012;78(12):867-74


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Technology is all around us and is increasingly used to enhance our lives. Here we outline some of the key ‘tech tools’ available to help people with MS stay connected and increase efficiency throughout everyday life. By Rebecca Kenyon

Computers, the internet and mobile phones are essential daily tools in almost everyone’s life. They help us to function more efficiently than ever before, and connect us to more people and information than we ever thought possible.

These and other electronic technologies give rise to a range of tools, programs and devices that are not only extremely useful to the general population but also pave the way for more ‘assistive technology’ to help people, such as those living with MS, to overcome some of the challenges related to their illness (for example, visual disturbances and issues with dexterity, mobility and cognition). Th

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What is ‘assistive technology’? Independent Living Centres Australia (ILCA) defines assistive technology as “any device, system or design, whether acquired commercially or off the shelf, modified or customised, that allows an individual to perform a task that they would otherwise be unable to do, or increase the ease and safety with which a task can be performed”.

It is clear that technology is all around us, and when it comes to people with MS assistive technology can play a vital role in helping to overcome the barriers presented by MS symptoms, increase participation and independence


in daily activities, and enhance quality of life and social connectedness. The box below reveals the range of solutions available; however in this article, we will predominantly focus on computer-based technology; what to consider; and how to access this technology. To discover more about all categories of assistive technology, refer to the Useful Contacts and Resources listed on page 19.

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Examples of common computer-related assistive technology include screen magnifiers, speech recognition programs, text/screen readers, modified or alternate keyboards, alternative mouse options (e.g. trackballs, joysticks, headsticks and sight pointers), keyguards, touch-screen technologies and switch access.

Most computers and mobile devices come with built-in accessibility features, or enable free accessibility tools to be downloaded and installed. Current versions of Microsoft’s Windows feature many accessibility functions that can make computers easier and more comfortable to use. To access these features and more, go to the ‘Start’ menu on your desktop and select ‘Programs’, ‘Accessories’, then ‘Accessibility’. For more information you can also visit the Microsoft Accessibility website: www.microsoft.com/enable

Apple Mac computers have similar accessibility functions through their Mac OS X operating system. Apple’s popular mobile devices (the iPhone and iPad) also contain a number of accessibility features, such as the voice-activated assistive tool available on the iPhone 4S. Visit www.apple.com/accessibility to find out more about these features for Apple computers and devices.

Smartphones (mobile phones built on a mobile computing platform, and with more advanced ability and connectivity than a standard mobile phone. E.g. iPhone, Samsung Galaxy, Blackberry) have introduced a whole new way of staying connected while on the go. Many tools can be accessed using the one mobile device, including phone, MP3 player, camera, video, internet and email, and GPS. The advanced application programming interfaces (APIs) on smartphones allow users to run third-party applications (or ‘apps’), making almost any task, game or fact-finding mission faster and more simple than ever before. From tracking your daily diet or playing your favourite game, to finding the closest public toilet, there is an ‘app’ for almost everything. We have provided more information about the most useful ‘apps’ for people with MS in our feature on page 30.

Assistive technologyThe range of assistive technology available to people with MS can be categorised into the following:l Aids for daily living: Devices that help in daily living

and independence. E.g. modified eating utensils, adapted books, pencil holders, page turners and dressing aids.

l Augmentative communication: Devices that help people with speech and/or hearing disabilities communicate. E.g. communication boards, speech synthesisers, head pointers and text-to-voice software.

l Mobility aids: Devices that help people move within their environments. E.g. electric or manual wheelchairs, vehicle modifications, scooters, crutches, canes and walkers.

l Seating and positioning: Adapted seating, standing tables, positioning belts, braces, cushions and wedges that provide body support.

l Computer access aids: Headsticks, sight pointers, modified or alternate keyboards, switches activated by pressure, sound or voice, touch screens, special software, and voice-to-text software.

l Environmental controls: Electronic systems (e.g. universal remote controls) that help people control various appliances.

l Home/workplace modifications: Structural adaptations that remove or reduce physical barriers.

l Prosthetics and orthotics.l Sensory aids for vision/hearing impaired: Aids

such as magnifiers, Braille and speech output devices, large print screens, hearing aids, visual alerting systems and telecommunication devices.

l Recreation: Devices to enable participation in sports, social and cultural events.

Computer-based connectionsIt would be safe to say that almost all households and workplaces use computers for a range of activities, including work, education and leisure. From desktop computers, laptops and notebook computers to toughbooks and tablets, your options for hardware and related components are endless. Deciding which computer and software system is best for you is beyond the scope of this article; however, knowing there are a vast array of options, and being sure to consult the appropriate experts, will go a long way in helping to establish what is best for you.


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Other handy mobile devices, such as e-readers (used to read digital e-books and periodicals) are increasingly making their mark, allowing users to store many books within the one compact unit and to optimise the screen according to their needs. The MS Library is establishing a range of e-books for loan in its collection. For more information about how to access our library resources (including multimedia resources) turn to page 38.

The information superhighwayThere is no doubt that the internet has changed the speed and way in which we access information, work, learn, communicate, shop, play and socialise. Most of us are familiar with the main benefits and features of the internet-enabled World Wide Web, email and so on. But more notably, the internet is changing the way people are educated, with

Since being diagnosed with MS in 2005, there isn’t much of my body that hasn’t been affected by the disease. Despite technically having relapsing-remitting MS, my symptoms have progressed to the point where I now use an electric wheelchair most of the time. My vision, speech, swallowing and cognition are also (and increasingly) affected.

I was working full-time for a bank in the city performing back-office administrative tasks when I was diagnosed – a job which required a high attention to detail. Over time, I have slowly decreased my work hours to 29 hours a fortnight and my role has moved sideways to accommodate changes in my skillset. Most importantly, I’ve remained on the job, which has helped me stay positive, stimulated and to have some purpose beyond managing my illness.

Regular contact with staff at MS Australia – ACT/NSW/VIC led me to the organisation’s Employment Support Service (ESS) around three years ago. I was having trouble with my mobility at work as well as issues with seeing my computer screen, which was affecting my concentration. I have a laptop and a desktop computer at home, which both have the capability to enlarge screen content just by touching the screen. At work, it wasn’t so simple.

They were able to assist me with the purchase of a walker, which I could use in the office [I would commute to and from work on my electric scooter], a cooling vest for the hot summer months travelling on the train, as well as a suitable keyboard with larger keys and a larger computer screen.

This all made a huge difference until late 2010 when things started to get a little harder. Again, I was referred to the ESS and this time a consultant came into my workplace, assessed the workspace and talked to me about the issues I’d been having. She also made an appointment for us to both speak with my manager

and the human resources manager of the company. As a result, the ESS assisted me with the purchase of an electric wheelchair and organised a hydraulic desk that lifts up so the wheelchair can go under it. They also referred me to the resources and tools offered by Vision Australia, through which I now have a magnifier to assist me with reading, and talking books.

I use the computer a lot at home for emails, banking, research and so on. I am very active with the online MS chat rooms, as well as a closed Facebook group. We share questions, comments and rants, which is a fabulous way to keep in touch.

Access to all of this technology, especially through the ESS, has kept me in the workplace. Otherwise, I believe I would have had to leave work 12 to 18 months ago. Staying at work meant that mentally, I could keep going and it helps me stay positive for the future.

Name: Sue Wilson Age: 51Occupation: Part-time administration clerk Lives: With husband in Cranbourne, MelbourneDiagnosed with MS: 2005


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institutions offering courses ‘online’ and organisations such as ours offering MS education sessions via webstream. For people living in remote areas, or those physically unable to travel and attend such sessions and course programs, the internet provides many more opportunities for learning and participation. Turn to page 22 to read how one woman with MS has taken advantage of our new webstream capabilities.

One of the newest and most rapidly emerging features on the internet is social media. The concept of online chat rooms has been around for some time, as has blogging. The MS Australia – ACT/NSW/VIC online peer support communities, mc2, have been running for some time and are a great way for people with MS, their family members and carers to connect to other like-minded individuals who are facing similar circumstances. There are separate chat rooms for people with MS and carers. Visit www.mc2.vicnet.net.au to register your email address and search for the relevant MS Australia – ACT/NSW/VIC online community.

With the introduction of online tools such as Facebook, Twitter, You Tube, LinkedIn and Skype, the way people connect and communicate in real time has been made even faster and easier. Media Access Australia recently published a report, SociABILITY: Social media for people with a disability, which provides an analysis of social media accessibility as well as a simple guide for users on how to use social media effectively. See the Useful Contacts and Resources on page 19 for a link to this guide.

Promotion of services through social media can also directly relate to the needs of people with illnesses such as MS. For example, people living with MS can follow the various social media pages operated by our organisation (and related health organisations) to keep up to date with the latest MS services, news, and research, and to connect with others living with the disease. A perfect example of this is the new Young Carers MS Facebook Group recently established by MS Australia – ACT/NSW/VIC. Read more about this in our interview with the group’s moderator, Erin O’Loughlin, on page 24.

The MS Australia social media pages can be found at the following links: Facebook: www.facebook.com/MSAustralia www.facebook.com/KissgoodbyetoMS

Twitter: http://twitter.com/MS_Australia https://twitter.com/#!/KISSGOODBYETOMS

You Tube: www.youtube.com/MSSocietyAustralia

Healthshare: http://www.healthshare.com.au/community/ health_challenges/multiple_sclerosis_(ms)

Google +: https://plus.google.com/u/0/?tab= wX#110182474676856356511/posts

Pinterest: http://pinterest.com/msaustralia/

Technology at work Employers are required to make reasonable adjustments to accommodate employees with disabilities. There may be funding available to assist with these changes through the Federal Government’s Employment Assistance Fund. This fund can be accessed via employment service providers, such as the MS Australia – ACT/NSW/VIC Employment Support Service (ESS) in Victoria.

The case studies featured throughout this article highlight the way technology has enabled two people with MS to remain active in the workforce, predominantly thanks to the assistance provided by our organisation’s ESS.

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The service currently supports people living in Victoria; however, a tender has been submitted to expand this service to the ACT and NSW (see page 6 for more information about this tender). This is a specialist program that assists people with MS to maintain employment or to find suitable employment. It provides specialised employment services under the Department of Education, Employment and Workplace Relations Disability Employment Services agreement.

Within this initiative, the Government’s Employment Assistance Fund assists people with disability and mental

I was first diagnosed with MS 25 years ago when I began tripping because of what I now know is ‘foot drop’. Having secondary progressive MS, the weakness moved up my right side, followed by the left leg about 15 years ago. At that point I had to go into a manual wheelchair and then an electric wheelchair two years later.

I was working for Kent Moving and Storage in the corporate sales department but it got to the stage where I was in a lot of pain and discomfort, and it was becoming increasingly difficult to get into the office. The company wanted to keep me on, however, so they helped me to set up a home office about 13 years ago. My wife became my full-time carer and I still work for the same company on a contract basis, at least 10 hours a week. Now, I only have movement in my left hand, even though I’m right-handed, and I use my wheelchair full-time. It’s important for me to keep my left hand strong. I see a physiotherapist once a fortnight, go to hydrotherapy once a week and I’ve got a daily exercise program.

Until recently, I was using the same cumbersome computer system that I was when I first started working from home. I had to move around a lot to make it all work and from a functional aspect, it became too difficult.

As a result, I began to look at new technology but I really didn’t know where to start. I was dealing with physiotherapists from MS Australia – ACT/NSW/VIC and they referred me to a social worker from the organisation who came out to talk to me about the issues I was having. She consequently referred me to the organisation’s Employment Support Service (ESS).

An employment support consultant came out last year to do an assessment and report on my circumstances. She established that funding could be available through the program to purchase some necessary technology. She had a representative from ComTEC (technology advisers for people with disabilities) come out to establish what I might need.

He had a box of tricks for me to try, including a smaller keyboard and a trackball mouse, both of which I could use without having to move my whole arm and hand. He also had Dragon Naturally Speaking (speech recognition software) on the PC he was using and asked if I would like to try it. I now use it all the time. I regularly get work emails, so I can dictate my responses through a wireless headset and the Dragon software writes out the response on the screen.

The representative from ComTEC recommended a larger 22-inch monitor, and to drive all of this he recommended a laptop computer as that would make me more mobile. I now use a Panasonic Toughbook with a touch screen. I can use it as my main computer sitting on the docking station in my office, or if I need to use it elsewhere I can just pick it up and take it with me.

The new set-up is outstanding. It’s made it a lot easier for me to work from home.

While all of this new technology can be daunting, it’s opened up opportunities that I never thought possible. Having the experts come and assess what I need and enable me to trial things was a load off. However, I couldn’t have dreamt of affording anything like this. The ESS has just fast-tracked everything because they knew where to go and how to get what I need. I am very grateful for all the support and advice I have received from the whole team.

Name: Alan Shaw Age: 64Occupation: Consultant to Kent Moving and Storage Lives: With wife Annette in Wantirna South, VictoriaDiagnosed with MS: 1987

health conditions to purchase a range of work-related modifications and services. Call us on 1800 042 138 to find out more about the ESS or to find a relevant employment service provider near you.

Deciding what is right for youIt is important that people with MS choose the most appropriate assistive technology to meet their needs. The ILCA says people often abandon assistive technology mainly due to inappropriate selection of technology. Many people purchase off the shelf solutions without seeking clinical advice.


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* Disclaimer: MS Australia – ACT/NSW/VIC does not endorse any one product over another. It is important to discuss the suitability of any product with your healthcare team.

** Special thanks to the MS Australia – ACT/NSW/VIC occupational therapists and Employment Support Service for their assistance with this article.

Useful Contacts and ResourcesCONTACTS:l MS Australia – ACT/NSW/VIC:

Call MS Connect on 1800 042 138 or visit www.msaustralia.org.au/actnswvic

l Independent Living Centres Australia: The ILCA’s member organisations (in each state) provide information and advice on an extensive range of assistive technology. Conduct a product search and view relevant publications. Visit www.ilcaustralia.org

l ComTEC: Offers services throughout Victoria to people of all ages with a disability who have communication and technology needs. Visit www.yooralla.com.au/services/independent-living/comtec

l Vision Australia: Services and support for people who are blind or who have low vision. Visit www.visionaustralia.org.au

RESOURCES:l National MS Society (US) Website: Features a

comprehensive section about technology solutions for people with MS. Visit www.nationalmssociety.org/living-with-multiple-sclerosis/mobility-and-accessibility/assistive-technology/index.aspx

l SociABILITY: Social media for people with a disability, by Media Access Australia (2011). Download a copy at www.mediaaccess.org.au

l MS Essentials 27: Adaptations and your home, by UK MS Society (2010). See www.mssociety.org.uk

l The Illustrated Guide to Assistive Technology, by S Robitaille, Demos Medical Publishing (2010). Contact the MS Library to loan this resource. See page 38 for details.

l Microsoft Accessibility: www.microsoft.com/enable/ l Apple Accessibility: www.apple.com/accessibilityl Better Living Through Technology Advice:

Provides impartial information and ideas on the use of assistive technology. Visit www.bltt.org

• Ability Net UK: www.abilitynet.org.uk/athome_resources

l Ability Technology: A Sydney-based not-for-profit helping people with a disability to be more productive and independent through the use of computer and home control technology. Visit www.ability.org.au

l http://bookshare.org: Purchase and download audio or Braille books

For some, a reluctance to seek advice may be associated with coming to terms with their condition.

However, it is extremely important to seek clinical advice and assessment. Occupational therapists (OTs), physiotherapists, speech therapist and other qualified health professionals, such as those employed by MS Australia – ACT/NSW/VIC, can provide support, information, resources, skills and opportunities to people living with MS to maintain their potential to participate in the activities of daily living, including work. Our staff work with clients to assess current difficulties, problem solve and suggest relevant technology solutions to help address any issues.

The main thing is to make an informed decision before investing the money in any particular product. Some people will be able to investigate and do this themselves, while others may need support from our organisation, or another organisation such as the ILCA, to help them assess their needs. If possible, it is recommended that you trial the equipment (e.g. some equipment can be hired and certain computer software can be trialled for free) so you know the money you are spending is for a product that suits you.

It is worth noting that some assistive technology must meet Australian or other standards. It is important to consider this when investigating your options. nTh

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EVENTS For bookings or more information, email [email protected] or call 1800 042 138

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WINFORMATION SESSIONS

Learn About MS Led by an MS nurse, this session is suited to those newly diagnosed, and people wanting to meet others and learn more about MS and our services25 Aug, 1pm – 4pmGloria McKerrow House, Deakin, ACT

Understanding Memory and Thinking Changes in MS: The Basics An opportunity to better understand, in simple language, memory and thinking changes as they relate to MS29 Aug, 10am – 12 noon, Penrith, NSW5 Sept, 10am – 12 noon, Tuggerah, NSW

Do you care about someone with MS?Meet with other carers and family members to discuss and share ideas around resilience, self-care and supportWeekday, weekend and teleconferenceVarious locations. Call 1800 042 138 for details

PHYSICAL ACTIVITY GROUPSProgram is subject to variation. Please check when you make a booking. Dates and times of more sessions will be available on our website.

See page 22 for teleconferences and webstreams available to clients in all regions.

Heartmoves for MS; maximising strength and flexibility; aquatic exercise groups; and yoga classes are held throughout the ACT, NSW and Victoria. For exact locations and times call 1800 042 138 or visit the ‘Health & Wellness’ section on our website at www.mssociety.org.au/health-wellness.asp

‘Mega’ Melbourne double headerThis year’s mega double event – the Melbourne 24 Hour Mega Swim and 24 Hour Mega Squash – has delivered ‘mega’ results, with $60,000 raised to support people living with MS.

On 21–22 April, 200 swimmers and 100 squash players converged on the Melbourne Sports and Aquatic Centre to swim and hit it out over 24 hours. Federal Minister for Sport, the Honourable Kate Lundy attended and our 24 Hour Mega Swim Ambassador Michael Klim captained a celebrity swim team that entertained participants and onlookers to great delight.

Michael was joined by Olympians Linley Frame and Matthew Welch, Paralympian Sam Bramham, Winter Olympian Stephanie Hickey, sports reporter Roger Oldridge, reality television stars Carla Mangion and Thomas Carr from My Kitchen Rules, 24 Hour Mega Swim founder Carol Cooke and comedian Tommy Little who got the crowd laughing at his 0.1km swim.

More than 23 teams took part across the double event, including the Heart of Japan team which gave the event widespread media coverage in Japan. They even got messages of support from two Iron Chefs!

Captained by Masahiko Iga (pictured), sommelier and chef at Melbourne’s Hanabishi Japanese Restaurant, this was Heart of Japan’s second 24 Hour Mega Swim. They have raised $16,000 to date. The team’s objective is to encourage friendship between our countries and thank Australia for its support following Japan’s devastating earthquake and tsunami last year.

Teams Squash Logic and the Grumpy Muppets took out top honours in the squash and swim events

Upcoming 24 Hour Mega Swims Places are now available for new teams and individuals to register for these upcoming Mega Swims.

NSW: Sydney, 23–24 June, Sydney Olympic Park Aquatic Centre

Victoria:• Brighton,16–17June,St Leonards College• Casey,16–17June,Casey Recreation and Aquatic Centre• Peninsula,7–8July,Pelican Park Recreation Centre• Bayside,7–8July,Waves Leisure Centre, Highett• Bellarine,25–26Aug,Bellarine Aquatic and Sports Centre

respectively. All money raised will support those living with MS via the Gold for Gold Scholarships and the MS Australia – ACT/NSW/VIC Financial Assistance Program.

We would like to thank all of the teams for their truly inspirational efforts.

Go to www.megaswim.com and follow us on Facebook and Twitter!


Learn About MSLed by Dr Elizabeth McDonald, this session is suited to those newly diagnosed, and people wanting to meet others and learn more about MS and our services23 June, 10am – 1pm, Footscray

Working with MS Explore your rights and responsibilities at work, as well as superannuation, insurance and financial matters6Sept,6:30pm–9pm,Footscray

Taking Control and Planning AheadReceive advice about enduring powers of attorney, guardianship and administration11 Sept, 10am – 12pm, Footscray

Get Active With MSOur physiotherapists discuss how fitness and exercise can help manage MS symptoms 9 July, 10.30am – 12.30pm, Ballarat 4 Sept, 11am – 1pm, St Kilda

MS Australia – ACT/NSW/VIC Family Camp Expressions of interest welcome13 – 15 July, YMCA Campsite, Mt Eliza

EVENTS

VIC

INFORMATION SESSIONS FAMILY & CARER PROGRAMS

PHYSICAL ACTIVITY GROUPS

For bookings or more information, email [email protected] or call 1800 042 138.

T.M.

portable mobility systems

Quick Getaway! No tools needed

Easy Rider 17 km range

Wide seat & retractable arm rest

Foldable Airport Friendly Total weight 30kg Battery pack easily detached

1300 657 818www.libertymobilityaids.com.au

Electric Wheelchair ScooterPortable in Car Boot

“SCOOT IN BOOT”

Easy as an umbrella

click 1-2-3 PULL APART

LIGHT WEIGHTHeaviest part only 13kg

Scoot_Large.indd 1 17/04/2012 1:00:04 PM

See page 22 for teleconferences and webstreams available to clients in all regions.

Managing FatigueAn overview of MS fatigue and how to manage this invisible symptom20 June, 10am – 12 noon, Blackburn 11 July, 1pm – 3pm, Blackburn

Thinking and MemoryLearn about common MS-related thinking and memory changes and how to manage these symptoms29 Aug, 10am – 12:30pm, Footscray

Medication UpdateMS Australia – ACT/NSW/VIC nurses will discuss the new and emerging medications available in Australia 3 July, 11am – 1pm, St Kilda

Heartmoves for MS; maximising strength and flexibility; aquatic exercise groups; and yoga classes are held throughout the ACT, NSW and Victoria.

The following new groups have been established:

• StrengthtraininginColac,Mondays11:30am (fortnightly)

• AquaaerobicsinCranbourne,Wednesdays10:30am

For exact locations and times for all physical activity groups, call 1800 042 138 or visit the ‘Health & Wellness’ section on our website at www.mssociety.org.au/health-wellness.asp

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EVENTS These sessions are available to clients and their family members across all regions

ALL

RE

GIO

NS Learn About MS

Suited to those recently diagnosed. Meet others and learn about MS and our services. Dates TBC, please call 1800 042 138

Get Active with MS Our physiotherapists discuss how fitness and exercise can help manage MS symptoms21 June, 1pm – 2.30pm13 Aug, 10.30am – 12pm

Managing Fatigue Learn how to manage MS-related fatigue, with this two-part teleconference series12and26June,6.30pm–8pm8 and 22 Aug, 10.30am – 12pm

Continence Care in MS Learn about bladder and bowel problems – causes, assessment and treatment options26July,7pm–8.30pm29 Aug, 10.30am – 12pm25Sept,7pm–8.30pm

Working with MS (NSW & ACT only)Explore your rights and responsibilities at work, as well as superannuation, insurance and financial matters DateTBC,7pm–8.30pm

Carers Support Group (NSW & ACT only)Suited to those who care for someone with MS in any capacity. Meet others, share your situation and provide mutual support First Wednesday of each month, 1pm – 2.30pm

Learn About MSLed by our Medical Director, this session is suited to those newly diagnosed, and people wanting to meet others and learn more about MS and MS Australia – ACT/NSW/VIC services23 June, 10am – 1pm

Managing FatigueAn overview of MS fatigue and how to manage this invisible symptom20 June, 10am – 12 noon

TELECONFERENCES

WEBSTREAMS

To register for a teleconference, please call 1800 042 138

To register for a webstream, please contact Andrea Salmon via MS Connect on 1800 042 138 or email [email protected]

Being web wise

I was diagnosed with MS nine years ago and was living in Melbourne at the time. I have relapsing-remitting MS, with my biggest symptom being chronic fatigue.

I am now 58 and a few years ago my husband and I decided to move to country Victoria to reduce the stress of living in the city. We live in a small town of only around 200 people. While we love it, it does mean we can be isolated in terms of accessing MS services.

I regularly receive Intouch and email updates regarding when new education sessions are occurring. I read that the organisation would be offering some of these sessions via webstream and I jumped at the chance.

In particular, I noticed a session coming up about psychoneuroimmunology (PNI) in MS and this really interested me because I had always believed that stress played a huge role in the onset of my MS.

I got in touch with the education coordinator and she sent me all of the information I needed to set myself up for the webstream. All I had to do was download a particular computer program from the internet, and I could trial the program before the actual session was scheduled so it was all very straight forward.

The session was fantastic. Dr Gary Fulcher delivered his presentation to an audience in Sydney, while I could watch it in real time from rural Victoria. Other people viewing the webstream were submitting questions via email, so it really felt like I was right there, participating in person.

To have someone of that calibre speaking was terrific, and even for those living in metropolitan areas who may find it hard to physically get to the MS centres, the webstream is a great option.

I have my eye on another upcoming webstream I would like to book and would highly recommend it to anyone.

As one of the first people to take advantage of our new webstream capabilities, Kim talks about the benefits.

To register for a webstream, please contact Andrea Salmon via MS Connect on 1800 042 138 or email [email protected]

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We’d like to thank the many who take the time to raise money to support those living with MS. Here is how some have rallied together to help make a difference.

Communities support the MS cause

MS COMMUNITY

Students support classmate with MS When a year 12 student at Hennessy Catholic College in Young, NSW, was diagnosed with MS, her schoolmates quickly rallied their support.

The student initially had trouble with her vision, and then difficulty with swallowing, which meant she was living on a diet of custard, ice blocks and other pureed foods. Year 12 showed their support by holding a 24-hour custard and ice block diet day to empathise with the student and share what she was experiencing. They sold ice blocks at recess and lunch and raised an amazing $2,000 dollars for MS Australia – ACT/NSW/VIC.

“One of the strengths of our school is its strong sense of community,” says Nicole Morton, Senior Welfare Coordinator. “In previous years we’ve organised fundraisers for the Japanese tsunami and the Queensland Flood Appeal. Our students have a strong sense of social justice and this was one way they could help someone close to them.

“The student and her family were overwhelmed with the generosity and support shown by her classmates,” adds Nicole. “She is not one to normally like fuss or attention and she is still coming to terms with her diagnosis and symptoms. Nevertheless, she has been extremely grateful for the support.

“A teacher also came forward to share how her sister has MS. Overall, the fundraiser got people talking about MS, so now the school community is more aware of the disease and what it means for people living with MS.” n

l Alena Vydra – Christmas fundraising

l Annette Johnson, Nick Johnson, Annabel Bowen Hopkins and Jaydon Inott – SMH Cole Classic

l Barwon Valley Golf Club – Christmas fundraising

l Colin Jowell – donations in lieu of birthday gifts

l Deanna Bartoletti – Nutrimetics lipstick drive

l Joshua Black – Bull Runner Dream Marathon, Manila

l Julia Gove – Teddy’s Big Shave l Kathleen Ng – All Trails Riding

For Wheelsl Laurie and Eileen Badrian –

donations in lieu of golden wedding anniversary gifts

l Lee Chandler and Jo Allen – donations in lieu of engagement gifts

l Mark Trott, Ron Hensen, Stuart Criddle, Col Perry – Wild Hoggs Motorcycle Ride for MS

l Meg Macintyre – donations in lieu of 50th birthday gifts

l Paul Easterbrook – MS Jumpathon (Tandem Skydive Nagambie)

Roll of Honour

We would like to thank the following community members who helped raise funds for MS over the past three months:

Workplace joins forcesThe Myer Stores Community Fund provides Myer’s staff the opportunity to support local charities. Each Myer store nominates a local charity and the store’s staff raise funds for their nominated organisation. At the end of the fundraising period, the Myer Stores Community Fund matches the total funds raised.

Myer’s Eastland store in Victoria has supported MS Australia – ACT/NSW/VIC for the past three years, raising almost $10,000 (including the matched funds contributed by the Myer Stores Community Fund).

“We initially chose MS Australia – ACT/NSW/VIC as we had a team member with MS and another team member who had a family member affected by MS,” explains Carol Pickworth from Myer Eastland. “Our most successful fundraising revolves around selling chocolates in our staff cafeteria, as well as raffles. We’d suggest to any business, small or large, that it’s very satisfying. We’re a small team here but, in these very difficult financial times, any amount raised is appreciated.” n

Would you like to be a community fundraiser for the MS cause? As you can see, the options are endless and every little bit counts. Gather your friends, family and colleagues, and discover how you can make a difference. Get further inspiration from our website at www.mssociety.org.au/events-community-fundraising.asp or contact:

l ACT: Mirimba Kovner, (02) 6234 7030, [email protected]

l NSW: Kerry Hill, (02) 8299 0134, [email protected]

l Victoria: Gill DeCis (03) 9845 2880 [email protected]

Get involved!

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MS COMMUNITY

As the primary carer of her mother from the age of 12, Erin O’Loughlin is no stranger to MS. Now 28, Erin is keen to lend her time to the MS cause, with her mum now living in supported accommodation. “I’ve always wanted to work with MS Australia – ACT/NSW/VIC,” she says. “I didn’t have a lot of exposure to the organisation as a kid so it’s something that I’d always wanted to look into.”

Erin made contact to become a volunteer and undertook peer support training last year. Shortly afterwards, she was offered the exciting opportunity to act as moderator on the new Young Carers Facebook page. “MS Australia – ACT/NSW/VIC had already considered starting up the Young Carers Facebook page and thought that I would be perfect for it. I work in the disability field, which was a natural step for me having been a young carer. I think that, coupled with my personal experience, made me suitable for the role.”

Erin believes using social media to reach out to young people makes a lot of sense, as many are already using Facebook. The Young Carers Facebook page is a closed group, which means that people need to request to join the group, and the conversations and posts can only be viewed by approved members, which protects their privacy. The group is aimed at teenagers and those in their early twenties; however, people won’t be denied access on small technicalities. “We’re certainly not excluding people who may be a little older or may not consider themselves carers. In fact, a lot of people, especially young people, don’t really think of themselves as carers,” says Erin. “The page is more about connecting people who are touched by MS through a family member, close friend or relative, and who could do with support. Even if there is a friend that you are supporting emotionally through the everyday, to me, that is a carer.”

Young carers can face various challenges. A common issue for Erin growing up was the lack of a social life. Her friends understood that she had to be home early to help her mum, but at times she still felt very alone. Erin says that it can also be an issue for young people when the person with MS needs time to come to terms with their diagnosis or to seek help, as the carer can feel isolated and/or be unable to get the help they need. “The Facebook group

Join the online communityThe MS Australia – ACT/NSW/VIC online Carers Peer Support Community provides carers and family members with the opportunity to meet and connect in a private setting. Visit www.mc2.vicnet.net.au to search for the relevant group and apply to join.

is one way for young carers to make connections or seek support without having to go through their parent or loved one who has MS. I am keen to help fill the gap for those young people who can sometimes be ‘silent’ in all that is going on around them.

“Whether you are talking about living with MS or just commenting on the weather, the purpose of the Facebook group is to get to know each other and open up because MS can be quite a sensitive topic,” says Erin. “Members can use it how they like. They may make their own connections, create friendships or even seek peer support,” she explains, “but naturally, those in similar situations will connect a lot better. We all like to be around people who understand us.” n

Young people affected by MS can now connect online, in real time, through the new MS Australia – ACT/NSW/VIC Young Carers Facebook page. Moderator Erin O’Loughlin shares how this new medium is reaching out to young people. By Sandra Helou

Young carers on Facebook

To join the Young Carers Facebook page, log on to Facebook and search ‘MS Australia – ACT/NSW/VIC Young Carers’ or go to https://www.facebook.com/#!/groups/359936620704868/ and request to join the group.

Erin hopes to see young carers connect through Facebook.


MS COMMUNITY

While Paula Allison has accessed some valuable support since being diagnosed with MS, this MS Ambassador believes a positive, proactive attitude can make all the difference.

Would you like an MS Ambassador to speak at your next corporate, school or community event? Contact the MS Ambassador Program team via MS Connect on 1800 042 138.

Tell us a bit about your MS journey?About nine years ago, I was walking through the train station and noticed I had a slight limp. I initially went to see my physiotherapist because I thought it was related to a recently pinched nerve. However, my physiotherapist actually suspected I had multiple sclerosis. She wrote to my doctor who arranged various tests, including an MRI, which confirmed that I have MS. I didn’t know what it was at the time; but I did know that Betty Cuthbert has MS and that she is in a wheelchair.

I began immunotherapy treatment and sought the advice of MS Australia – ACT/NSW/VIC in terms of what to expect from the disease. With this knowledge, support from my husband and family, and a positive outlook, I continue to live life to the fullest. I still work full-time (albeit in a slightly different, lower-impact role) and I exercise as much as possible without over-exerting myself to the point of fatigue. I walk often and attend a weekly strength exercise class for people with MS.

The theme of this edition is ‘Technology to stay connected’. I understand you’ve accessed some additional technology to assist you at home and work?I am fortunate because my employer, IBM, is very obliging. They will generally provide whatever I need to adapt my work space. For example, they provided a laptop so I can

Name: Paula AllisonAge: 54Occupation: Full-time client project administrator for IBM AustraliaLives: With her husband in Sunbury, VictoriaDiagnosed with MS: 2003Has been an MS Ambassador: For two years

MS Ambassador profile

work offsite, as well as a digital recorder to help with my workload. Part of my job requires me to take notes for long meetings; however, my MS symptoms make it difficult for me to handwrite for any length of time so I now use the recorder for this.

Further to that, though, I was finding it quite challenging to type out these long recordings, so I looked into speech recognition software that could do this for me. IBM weren’t able to provide that due to corporate policy but that’s when MS Australia – ACT/NSW/VIC stepped in to help through the Employment Support Service (ESS). A representative came to my workplace and discussed my needs. We explored options that would enable me to manage my symptoms and remain working.

In the end, to enable me to work from my home office and manage my fatigue and heat sensitivity, the ESS assisted me to apply for funding for an air conditioner. Funding and advice was also provided to help purchase the Dragon Naturally Speaking speech recognition software, which transcribes my voice recordings into Word. It has made a huge difference and I now work from home one day each week, which saves so much time and energy.

Why did you decide to become an MS Ambassador?I had read about the program many times in Intouch and figured I could probably get involved given I love to talk and that I was accustomed to speaking in front of large groups due to the types of jobs I’d had.

As an Ambassador, I am also up to date on what’s happening in the world of MS and what’s available for people with MS. It gives me more insight into what I can do and what’s possible so that I’m not afraid to try new things.

What are some of the things you’ve done in your role as an MS Ambassador?I’ve presented at a number of education sessions, including ‘Working with MS’ and ‘Get Active with MS’ sessions. I’ve spoken to physiotherapy students at La Trobe University, to corporates and fundraisers, as well as on radio. There’s a great variety.

What is the message you most like to deliver in your role as an MS Ambassador?Dream of making yourself better. Even though I have a supportive husband and family, I am an individual and I want to do everything myself for as long as I can, and as best I can. Other people can help you but you’ve got to take control and have a positive mindset. n


MS COMMUNITY

Meet some of our inspiring volunteers who are helping to make a difference.

Volunteers in action

Dedicated volunteer Edna Schreuder was recently awarded the Sir Louis Pyke Award in recognition of her tireless contribution to the MS cause. The award honours the memory of Sir Louis Pyke (president of MS Victoria from 1976 to 1980) and is presented each year to a person who has made an outstanding contribution as an MS volunteer, carer or staff member. Edna is a very worthy recipient this year having volunteered at the MS Community Shop in Waverley, Victoria, for the past 16 years.

Edna was humble in accepting the award. “I was taken aback because I didn’t expect anything like this to happen,” she says. “You hear of people in other walks of life receiving these awards and you never think something like that will happen to you. I really do feel very grateful.”

With a background in retail management, Edna officially retired from paid employment in 1994. After taking some time off to relax, Edna started to get itchy feet and began looking for something to fulfil her former love for work. Stumbling across a notice in the Waverley shop window that was calling for volunteers, Edna made an enquiry and, as she says, “the rest is history”.

“I started off volunteering one day per week for about two years. The previous manager fell ill and when she left I was asked if I’d like to take over her role. Having worked in retail, I could see where the potential areas for improvement were.”

Award recognises outstanding volunteer

Edna accepting the award with her proud family by her side.

Volunteers shine at MS Melbourne Cycle

On 25 March more than 240 volunteers supported, cheered and entertained the 4,500 cyclists participating in the annual MS Melbourne Cycle. In its sixth year, this event plays an important role in raising funds to directly support people living with MS.

As with many of our organisation’s activities,

Edna now coordinates a team of 35 volunteers and manages all aspects of the shop, often volunteering for 39 hours a week! “So much for retirement”, she laughs, “but I love it. It’s a challenge and I set myself goals. I regularly meet people who are living with MS, which inspires me to keep going. I’m also fortunate enough to work with some great people. I’m always talking and having a laugh with other volunteers and customers. It’s more than a job.”

“Over the years Edna has forged valuable relationships with locals who

have become regular customers, as well as with traders who come to the shop looking for that missed bargain,” explains Ara Levonian, Retail Operations Manager, MS Community Shops. “It is Edna’s tenacity and her sheer determination that assists the Waverley shop to raise funds to support services for people living with MS, their families and carers. It is estimated that, under Edna’s leadership, this shop has contributed $351,000 in the past two and a half years – an amazing achievement.” n

the MS Melbourne Cycle could not have been possible without the support of a large team of positive and energetic volunteers. Volunteers assisted as course managers and marshals, with registration, information, rest stops, barbecuing, selling merchandise, cloaking, photography and much more. Many volunteers also assisted in the months leading up to the event to help prepare for the very successful day.

Despite the cool weather this year, the dedication and patience demonstrated by every volunteer was truly admirable. A great day was had by all with the biggest reward for everyone being the feeling of community spirit generated in support of people living with MS.

Thank you to all our remarkable volunteers who made such a significant contribution to a wonderful, enjoyable and successful event! We look forward to MS Melbourne Cycle 2013.


After working as an air ambulance coordination officer (and later manager) for 37 years, I decided to retire two years ago and enjoy some quality time with family, including my nine grandchildren.

Even when I was working, I would often say to colleagues that when I did retire I’d volunteer my time at the MS centre in Lidcombe. I live in the next suburb and would often drive past the centre. My only other connection to MS is that I used to go the gym at Regents Park with Betty Cuthbert when I was about 19. She wouldn’t remember me but it’s a little ironic I suppose.

Realising I would need to keep occupied in retirement, I also decided to study massage therapy and completed my diploma in December last year. Having been an ambulance officer, I thought massage would be a rewarding follow on.

I casually came to visit the MS centre in February last year to talk to someone about volunteering and ended up chatting with Paul, who was the massage therapist at the time.

Kevin’s story

Kevin helps clients relax through massage.

Looking on the brighter side

Paul Stephens has experienced his fair share of challenges but has learned the true value of helping others.

Paul worked as a chef for 20 years then moved to Melbourne to support his daughter who was struggling with a severe eating disorder. There he worked as a storeman.

In 2004, Paul was on a holiday in Thailand when a friend suggested he slow down on the ‘drinks’. “I didn’t know what my friend was talking about

ACTl A volunteer is required to drive

a client weekly or fortnightly to the gym. The volunteer will need to be able to pack the client’s wheelchair into their car.

l A mature volunteer is required to visit a lady who has MS in her home. She’d enjoy outings to the shops, as well as craft activities.

NSWl Social support volunteers are

required at the Studdy MS Centre in Lidcombe to run client activities and go on outings. Drivers licence beneficial.

l A social support volunteer who can sew is required at Lidcombe for a half day each week.

l Gardening volunteers are required at the Studdy MS Centre in Lidcombe.

l A male volunteer is needed to provide social support to a client at Regents Park.

Victorial Volunteers required to assist at

the new MS Community Shop in Bendigo. Volunteers also needed at Melton, Malvern, Daylesford, Fairfield and Geelong shops.

Volunteer opportunitiesWe are always looking for more volunteers and here are some opportunities we’re aiming to fill right now.

If you’re interested in these or any other volunteer role across our regions, please call MS Connect on 1800 042 138.

as I was only on my second beer, but he said I was all over the place. When I got back to Melbourne, I had it checked out and was diagnosed with primary progressive MS. I was actually relieved because at least I knew what was going on and I could get on top of it.

“Nowadays, I always keep busy and I have a positive attitude. I’ve seen what the negative mind can do, so even when I have trouble with my balance I just laugh it off.”

Paul retired in 2006; but after volunteering for Cranbourne Integrated Care in Hampton Park, taking people with disabilities to physiotherapy and the gym, he realised there was a real demand to help others living with MS.

Paul began as a social support volunteer for MS Australia – ACT/NSW/VIC in 2007. Today, for our organisation, he visits two people with

When I made contact again late last year they were after someone who could provide massage for residents living/staying at the centre.

Working with another massage therapist, Leon Dettman, I have been volunteering at the centre now for almost six months and thoroughly enjoy it. I come in one day a week and give the residents and clients in respite light massages, which they say makes them feel relaxed and sometimes invigorated.

Since the day I started, I just feel so much happier. Seeing the change in clients before and after the massage is very rewarding; they are more communicative and animated.

Volunteering is actually energising for me and well worth doing. n

Paul shares his positive attitude with others through social support.

MS each fortnight, taking them to medical appointments, assisting with gardening and introducing them to support networks. In total, however, Paul volunteers almost full-time – at least four days a week. “It’s a social outlet for me too,” he says. “We go for coffee or just sit and chat, it’s great.” Paul admits the role can be quite demanding. “But at the end of the day, you’ve made somebody’s day, so it’s worth it. I love it.” n


MS COMMUNITY

Making like-minded connections“Last September I was diagnosed with MS, which was a big shock. I’d had numbness in my feet and tingling up my leg, as well as strange hot and cold sensations on my left side. It’s not right for a 24-year-old to not be able to feel her feet, so eventually I went to see a neurologist and after a few major tests, I was diagnosed with MS.

While my parents had been staying with me while I worked through things, I needed to get back to everyday life and to touch base with someone who knew exactly what I was going through. The MS nurse who was helping me with my injections suggested I look into the Peer Support Program.

I joined the program and was put in contact with a Peer Support Volunteer who I spoke to every week for the length of the program. She was a little older than me and her MS was more progressive so I was able to get the truth from someone who wasn’t sugar-coating it for me. I have a strong opinion so I like to know all the details.

My housemates have been great, but they say things like, ‘you don’t look any different, you look fine’. I definitely feel different and there’s definitely something wrong. That empathy gap is very different when talking to someone who knows what you’re experiencing.

My advice is, if you are struggling, take up peer support and try to get someone as close as possible to your diagnosis or symptoms. I have found it so beneficial that, after things settle down for me, I might even consider becoming a Peer Support Volunteer myself.” n

To find out more information about the Peer Support Program, call MS Connect 1800 042 138.

Concerned that others with MS were feeling the same sense of isolation, Lisa set about to establish an MS support group in Grafton, NSW.

Support group profile

Why was the Grafton Support Group established?After I was diagnosed with MS, I couldn’t find any support around Grafton and I thought ‘it can’t just be me’. I was worried that everybody else with MS in the area was feeling the same. It was just scary. The Community Support Worker in this area asked me if I would like to start a support group, so that’s what we did.

Who can join the Grafton Support Group?The group welcomes people with MS, their family members and friends. It doesn’t really matter who turns up as long as they have a good attitude. It’s important that people know that there is a place where they

can go to sit down, talk and share their stories.

Where and when do you meet?We meet every third Tuesday of the month. Lately we’ve been meeting at the restaurant at The Clock Tower Hotel in Grafton, where we can have a chat over lunch. People think that if you have a disability you can’t get out and about but we want to get rid of that idea.

What does the support group talk about when they meet?Everyone generally has a story to tell and we laugh at our own experiences. Silly things can happen when you have MS. We also talk about new treatments or doctors but, most importantly, it is a way to ensure that people don’t feel alone. The group has helped to create lasting friendships so when someone has an episode they have someone to turn to.

What makes for a successful support group?Understanding and not judging is so important. Acceptance and letting each other feel as significant as the next person is also essential. We don’t let people fall through the cracks. If I haven’t heard from someone for a while, I give them a ring to see how they are. For those of us who are no longer working and don’t have those daily connections with co-workers, a support group is especially beneficial; it’s good for your morale. n

There are a number of MS support groups operating throughout the ACT, NSW and Victoria. To find a group near you, please contact MS Connect on 1800 042 138.


4716 New CAPS Ad 140X210 OL.pdf 1 1/05/12 7:20 AM

Peer support: Training in motion

When Muna was diagnosed with MS in 2007, she found it difficult to obtain work due the unpredictability of her MS. Nevertheless, she wanted to remain ‘occupied’, so decided she would use her free time to volunteer. “I instantly found volunteer work at the MS Nerve Centre in Blackburn so I was very happy,” she says, “but one day I heard about the Peer Support Program and thought that it would be a good idea to take part. I looked into it and was able to participate in the next round of peer support training.”

Muna found this experience very interesting. “Before the training I was a bit closed about my MS. I don’t tell everybody that I have MS because I feel they start to look at me a little differently. At the training, though, I got to meet people just like me who also have MS and it was like being part of a big happy family where I felt accepted.”

Through her peer support training, Muna was also able to find out more about some of the useful strategies she

could adopt to help manage her MS. “I found the topics on thinking and memory, emotions and MS, communication skills and dealing with difficult situations most helpful,” she recalls. Listening was also an important skill Muna was able to develop through the program.

While her profile has not yet been matched to another person with MS needing peer support, Muna can already attest to having experienced how beneficial and rewarding a peer support relationship can be. A gentleman Muna had trained with in the program was considering changing his treatment and emailed Muna who had had similar problems with her medications. “He wanted to know how I was going with my current treatment. I replied and shared my experience with him. After that, I thought to myself – actually, I just helped somebody.”

As a newly-trained Peer Support Volunteer, Muna looks forward to helping others by listening and offering support. n

As a new recruit to the Peer Support Program, Muna reveals how the training delivered far more benefits than she could have predicted.

Muna finds helping others with MS a very rewarding experience.


MS Bytes Developed by Diana de AvilaDescription: This app is great for those who are interested in staying abreast of the latest in MS news and research. Features:l Provides all the latest news on MS research including

clinical trial alerts.l Features videos, news and basic MS information such as

MS symptoms and treatments.Suitable for: People with MS or those interested in the latest MS-related information. This app is MS-specific.Interface: iPhone.

HEALTH+WELLNESS

Take charge of your healthIn the digital age, there are a number of innovative ways to organise and manage all the different aspects of our lives. Here we take a look at some of the current applications (or ‘apps’) that can track health and medical information, help in emergencies or make the day-to-day symptoms of MS easier to deal with.

Medicines List Developed by NPS MedicineWiseDescription: This free app allows you to keep track of your medications. Make a list of all of your medicines including prescription medications, those you buy over the counter and complementary medicines.Features:l Schedule and reminder functions.l Stores images of medicine packaging and dispensing

labels.l Keeps track of changes to your medicines.l Export or email-enabled so you can send a printable copy

to your health professionals.l Saves personal details, contacts and questions. Suitable for: All members of the family, not just the person with MS. This app is not MS-specific.Interface: iPhone, iPod touch and iPad.

National Public Toilet Map Developed by Human Solutions Pty LtdDescription: The National Public Toilet Map shows the location of more than 14,000 public and private toilet facilities across Australia. Features: The app provides you with the location of the five nearest public toilets with useful information including details about the opening hours, baby change rooms, accessibility for people with disabilities, parking and other features.Suitable for: People with continence issues, young families and those holidaying or travelling to unfamiliar destinations. This app is not MS-specific.Interface: iPhone, iPod touch and iPad.

A few more useful apps to try

For reducing stress and fatigue:l Metlink Melbourne &

Sydney Transit – get around town easily by planning trips and finding the best route before you set out.

l Relax with Andrew Johnson Lite – for those who find it hard to slow down, relax or meditate.

For memory and thinking:l ShopShop Shopping list –

don’t forget a thing with this shopping list – add items as you remember and tick them off while you shop.

l Evernote – ensure all your notes, audio and web clips, files and images are available on every device and computer you use.

For vision impairment: l Readability – a web and

mobile app that zaps online clutter and saves web articles in a comfortable reading view.

l Unus Tactus – access a simple picture-based phone directory to make calls.

For medical emergencies:l Home Doctor – have a doctor

come and treat you and your family at home – during the night, on a weekend or even a public holiday (Vic only).

l AMA Find a doctor – the app which helps you find Australian Medical Association registered doctors in Australia.


My MS Manager Developed by Multiple Sclerosis Association of AmericaDescription: Although app is American, it is still very useful for the everyday management of MS by alllowing you to keep all your MS-related information in one place. Your partner, carer or other family members can also find this app useful in emergencies.Features:l Stores the contact information of your healthcare team for

easy access.l Keeps notes about your MS flare-ups, allows you to track

their duration, frequency and intensity.l Provides information on side-effects and effective

treatment strategies for MS.l Links to (US) MS resources.Suitable for: People with MS. Being MS-specific, this app is very useful for recording all your MS-related information. It can provide peace of mind for those who like to plan ahead for a relapse or a bad day.Interface: iPhone, iPod touch and iPad (android and Blackberry coming soon).

Take charge of your health

* Disclaimer: MS Australia – ACT/NSW/VIC does not endorse any one product over another and does not take responsibility for their efficacy or accuracy. It is important to discuss the suitability of any product with your healthcare team.

** Special thanks to Emma Bennet, Social Media Marketing Coordinator, for her assistance with this article.

HEALTH+WELLNESS

Medi Profiles Developed by St John Ambulance AustraliaDescription: Useful in emergency situations, this app is the winner of the 2010 Safe Work ACT Award. It allows you to save your own medical information, as well as the medical information of family, friends and colleagues in one place. Features:l Custom medical profiles are displayed

in an easy-to-read format. l Share your profile with friends, family

and co-workers at the touch of a button.

l Allows you to store information such as name, DOB, photo, allergies, medications, medical conditions, medical action plans, next of kin and family doctor.

Suitable for: People who need to keep other people’s medical details on file or general use. This is not MS-specific.Interface: iPhone, iPod touch and iPad.

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Garth McLean initially took up the Iyengar style of yoga after he was diagnosed with MS in 1996. “I was in hospital due to a major exacerbation when my doctor recommended Iyengar yoga to help with stress,” recalls Garth. “I had just been diagnosed and I could barely walk, so two days after leaving the hospital I found a yoga studio and enrolled. I was placed into poses that made me feel so much better. After a few sessions I never looked back.”

Yoga Australia describes yoga as the regular practise of a range of different techniques such as postures or poses, breathing awareness and exercises, relaxation and concentration, self-inquiry and meditation. It is this combined focus on physical movements, breathing and mindfulness that is believed to deliver therapeutic benefits, both mentally and physically. Yoga poses, in particular, can strengthen and invigorate the body to help all physical systems – the nervous system, skeletal and muscular structures, circulation and respiratory systems – to work properly.

“I believe yoga helped me to be able to walk steadily again so that’s given me the confidence to continue with the daily practise,” says Garth, who is now an Iyengar yoga teacher. “Sometimes there is a misconception that yoga is an exercise program. I mean, yes, there is a physical

aspect to it but yoga is all-encompassing – a union of the body, the mind and the breath.”

There are various styles of yoga, and although poses are integral to all styles, there are differences in how these poses are approached and where the attention is directed. For example, some styles may focus on mastering and holding the pose, strict alignment, breathing or the flow of movement, while others will turn up the temperature in the room to cause perspiration. Iyengar yoga, which

A way to healingOriginating in India thousands of years ago, the practice of yoga has become popular in the Western world due to its therapeutic benefits. Sandra Helou speaks to Garth McLean, senior Iyengar yoga teacher, about the benefits of yoga for people living with MS.

After practising Iyengar yoga over many years, Garth McLean has mastered some of the more difficult poses.


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Common yoga practicesl Ashtanga – a physically demanding yoga practice

where the attention is placed on the breath and the journey between the poses, rather than perfect body alignment.

l Bikram yoga or hot yoga – performed in raised temperatures, it is highly focused on fitness and promotes flexibility and detoxification. Those who experience heat sensitivity should be cautious as an increase in body temperature by 0.5 degrees Celsius can induce or worsen MS symptoms.

l Hatha yoga – the most basic form of yoga and the foundation of all yoga styles. It involves gentle stretching, simple breathing exercises and seated meditation. It is popular for stress management.

l Iyengar yoga – poses are generally held for longer than in other styles of yoga. Props are used to enable people of all ages and abilities to participate, and it is slow paced so that emphasis is placed on achieving correct body alignment. Sequencing the poses is also considered beneficial to reach a more powerful cumulative effect.

l Kripalu – referred to as the yoga of consciousness, this is a gentle and introspective practice where poses are performed to recognise and release spiritual and emotional blockages.

l Kundalini – a style focused on awakening the energy at the base of the spine and drawing it upward. As well as poses, this form of yoga is characterised by chanting, meditation and breathing exercises.

l Viniyoga – a gentle healing practice suited to those who have an injury or who have recently completed surgery.

Garth has been teaching since 2000, is alignment-focused and incorporates the use of props such as ropes, chairs, wooden blocks, blankets and straps.

In the Iyengar tradition, Garth explains, there is a highly standardised certification process. The process is governed and overseen by Mr BKS Iyengar, the founder of Iyengar yoga, and the various Iyengar Associations around the world. “In particular, you need a good understanding of the physiological benefits of the practice and how it applies to a certain condition,” he says. “In Iyengar yoga we adapt the postures to the individual’s ability and needs.”

Garth himself has come a long way in learning and understanding the Iyengar style of yoga. “At first I was reluctant to even use the props,” he admits. “I thought ‘no, I don’t need that, I am not handicapped’.” But he was quick to realise the purpose of the props. “The props enable a person to position the body in a way that they may not otherwise be able to achieve on their own. This helps to ensure they gain the full benefits of that particular pose. At times, I notice that I can actually get feeling in parts of my body where I don’t usually have feeling.”

Garth often uses the analogy of recharging an appliance to explain the concept to his students. “If we can align the body in postures so that it ‘plugs in’ correctly, slowly the transmission flows through, we nourish the nerves and the muscles, and the body is given a chance to heal itself and realise its potential, not only physically but mentally.”

In general, yoga can help with flexibility, strength, muscle tone, pain prevention, better breathing, mental calmness, stress reduction and body awareness. Garth has also used Iyengar yoga to specifically combat some common MS symptoms, including:

Take a look at the websites below to access more general information about yoga, as well as information to help you find a yoga style and school that suits you:l www.iyengaryoga.asn.aul www.yogalife.com.aul www.yogaaustralia.org.aul www.findyoga.com.au

Garth with Mr Iyengar, founder of Iyengar yoga.


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l Fatigue l Numbness and tingling l Optic neuritis (doing restful poses while wearing an eye

wrap can help rest the eye nerves) l Depression l Pain l Loss of feeling (from the navel down)

“There are poses that people can do to activate the pelvic floor muscles even if they can’t feel everything,” explains Garth. “This can be embarrassing for people, so I talk about it and get people to try the exercises without them having to disclose anything.”

So what would the yogi’s advice be to those who are considering yoga? “A lot of people find it hard to include something into their life but I suggest they start off with 15 to 20 minutes a day – it’s a coffee break. As people begin to realise the benefits, they will likely increase this over time.

“Go slowly and approach with courage and caution. These are the steps to a healing process and a wellness strategy. For me, if practising yoga 20 to 30 minutes a day is going to help me feel better, that’s a small price to pay.”

Although Garth advocates the benefits of yoga, he is also quick to emphasise that “Iyengar is not a cure for MS. It’s a wellness strategy that may help symptoms and delay or prevent future exacerbations through daily practise. In my situation, I certainly found that to be the case”. n

To read more about Garth McLean and his journey with Iyengar yoga and MS, visit www.yogarth.com

How long have you been practising yoga?I discovered yoga in 1993 when I was travelling in India. Over the years, I tried various forms and styles of yoga until about 2002, which is when I started Iyengar yoga.

Did you find it difficult to learn? Not at all. Once you identify the style of yoga that works for you, part of the process is then finding the right school and the right teacher. Once you have those, it just takes practise and dedication.

What initial changes did you notice and what have been the benefits for you?The initial changes would have to do with strength and flexibility. In terms of MS, it was the ability to use the postures to affect my mood. In 2004 I was struggling with depression, which is highly prevalent in people with MS anyway, but at that time I was also taking one of the immunotherapy treatments of which depression is a side effect. I began doing poses that are specifically helpful for depression and that was my strategy for that symptom. I did that for a number of years and it was very successful. That is the benefit of Iyengar yoga; depending on what I am hoping to achieve mood wise or physically, I can select postures that will be effective.

Would you recommend it to other people with MS? The thing with this style of yoga is that it works with injury and illness. The props help you to work with whatever is going on and to modify the postures and adapt them to suit your symptoms. I would recommend this form of yoga to anyone, not just people with MS.

Did you find it easy to integrate it into your life?It was easy because I actually notice the physical difference if it is not there. A few years back the school was closed over Christmas and I wasn’t confident enough to practise on my own just yet. In that time it became obvious to me that, physically, my body didn’t feel as good.

I also had a relapse a couple of years ago that was all in my eyes, and I managed to work through it but I would crawl home, get upstairs and do about three poses, which were half an hour in length. The effects after that were amazing. It was something that I could not live without during that time. It actually supported me through that relapse.

If you are feeling burnt out and you become familiar with Iyengar yoga, you can do your own practise at home. You come to recognise when energy is low and how your body is feeling and you can choose what poses and props to use.

After travelling to India and stumbling across yoga, Ingrid has used the practice as a way of maintaining her health and wellbeing.

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winter 2012 intouch 35 www.msaustralia.org.au/actnswvic

Did you know... that the Calwell, Curtin, Jerrabomberra and Wanniassa Community Bank® Branches give up to

85% of their profits back to the community?

This support comes in the form of donations, grants and sponsorships, and goes towards helping organisations like MS Australia enhance the quality of life of people with MS.

Registrations for this year’s MS Readathon are now open. We’ve listened to your feedback and the process is now quicker and easier than ever.

As well as giving you more time to prepare for the reading period, we have introduced a new streamlined registration process, which you can access online at www.msreadathon.org.au

Each year, hundreds of Australian schools take part in the MS Readathon, helping to introduce (or reintroduce!) students to the wonderful, exciting world of books. One such school is Rye Hill Public school in NSW. Rye Hill Public is a small school with just 28 students. Thirteen of these students took part in the MS Readathon last year, led by their teacher Frances Dashwood. “It was astonishing to see how motivated the children were to raise money for such a worthy cause,” says Frances. “The students raised more than $1,000 with two of our students in the top 100 fundraisers.

“As a result we were entered into a national draw to receive 20 Apple iPads and we were one of five lucky schools in Australia to win this amazing prize. Both the staff and students are so excited about using the iPads in the classroom. This new technology will further enhance the teaching and learning in all areas of the curriculum.

“I’d urge all schools to get involved in this fantastic program,” adds Frances. “It is so easy to take part. Why wouldn’t you want to encourage and motivate your students to do some of the most important things in life; read, broaden their knowledge base, raise their community awareness and help raise funds for people living with multiple sclerosis? It’s a win–win all round.” n

Registrations now open

If you would like to get involved as a volunteer, to help the MS Readathon team deliver this exciting program, please call 1300 677 323.

60 MinuteS for MSThis year, thousands of students will read throughout the month of August, while thousands of others will take part in the inaugural one day MS Readathon event ‘60 MinuteS for MS’. Through this initiative, schools throughout ACT, NSW, Victoria, Queensland and Tasmania will have the opportunity, for the first time ever, to get involved and participate in activities that are linked to reading simultaneously. This exciting event takes place on 24 August to coincide with the National Year of Reading ‘Reading Hour’, a project initiated by Australian libraries and library associations.

Schools are asked to register their interest in either of these events via our website (www.msreadathon.org.au) or by calling 1300 677 323.

Rye Hill Public, one of the lucky winners of 20 Apple iPads.

www.msaustralia.org.au/actnswvic36 intouch winter 2012

Speaking from experience, Bruce Mumford humourously shares how to win friends and influence people while using wheels.

There is still a way to go but acceptance and facilities for wheelchairs have improved in recent years, which means we wheelchair users need to remember that we have responsibilities too.

You might find it frustrating to see all these people flitting about on two legs when you can’t even get up out of a chair but remember, they see you as a bit different; and there’s more of them.

Like it or not, when you’re in a wheelchair you’re on display, so here I’ve offered some tips that may make it easier for people to relate to us when we’re out in public.

Dealing with the attention is relatively easy for me because I used to be a performer and a drama teacher before MS meant I had to retire from full-time work in 1997. My drama experience means I’ve grown used to being on stage and coping with tremendous stuff-ups in public. But even if you don’t have that background, I think you’ll find things a lot more pleasant if you use a few of these skills.

Before we begin, however, and you start to think that I’m being a bit ‘holier-than-thou’, let me point out that these tips have been learnt the hard way. I’ve made every one of these mistakes and a lot more. Do I now follow my own advice? Only occasionally, because, as my wife will testify, my memory rarely has a direct relationship with my great thoughts of five minutes ago!

Take care of your appearanceI know all too well how difficult and time-consuming it can be to get dressed in ‘normal’ clothes with buttons, belts,

zippers and studs, but there are shortcuts. (Velcro is a wonderful invention.) Remember to organise your carers as they can be as good as having your own dresser and make-up artist.

Cleanliness is also important and don’t forget to make use of your wheelchair-height mirror.

These comments apply to your chair as well as yourself. Be wary of too many stickers and attachments, apart from a safety flag.

Be pleasant We wheelchair users have a bit of a reputation for being a surly lot. I’m sure part of this comes from the fact that we have heard a great deal of the conversation directed our way a thousand times before. Remember: “Aren’t you lucky to have a chair to sit in whenever you want,” or “Wow, you can really move in that thing.” Then there’s, “You’re so brave/clever/talented,” and how about, “Have you thought about trying this miracle cure/charm/religious cult/herb/drug/exercise/investment opportunity?”

Bruce: “This might be comfortable but it’s not a good look for going out.”

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Bruce: “This is not a great place to stop and greet someone.”

winter 2012 intouch 37 www.msaustralia.org.au/actnswvic

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People often assume that because we are in a wheelchair we also must be mentally disabled and because they have to talk down to us they should speak to us like children. To deal with this my mother suggests letting them get to five silly comments and then to run them down! However, I don’t recommend this approach. Instead, focus on the person’s face and try to link them to a movie character you know? Next time you meet them in the street and think of Yoda you’re much more likely to smile than grimace.

You have probably already learnt that a lot of people you’ve never met will stare and then smile at you as they pass. Just smile back knowing that if they did that to an able-bodied person they’d probably be taken in for questioning.

Be clear in asking for help As a friend put it, “Most people mean well; they just don’t know how they should help”. If you don’t want any help, let people know early to save embarrassment later. If you do need it, be specific. Nearly everyone will be only too happy to help. In fact, I think being in a wheelchair is a great way to find out just how good most people are.

Be appreciative If someone helps you, be patient and accept their generosity graciously. Don’t expect it or take it for granted. You may need their help again sooner than you think!

Watch where you’re going Electric wheelchairs can be dangerous things. Be aware of the dimensions, turning circle and responsiveness of your chair. Try to drive in a predictable and direct path to the left of passing pedestrians, without changing direction too suddenly or going too fast. People can have a nasty habit of swiftly striding out of shop doorways or heedlessly hopping out from cars without expecting to bump into a wildly whizzing wheelchair.

When backing up, always look behind you first and if you are unable to turn your head, a rear-view mirror is essential. You don’t expect people to fall over you, so remember that most people don’t expect you to run over their toes.

Being in a wheelchair is a great way to find out just how good most people are

Make people aware of your presenceMaking people aware of your presence is especially important in crowded shopping centres or streets. A flag is a good idea, so is regularly tooting your (invariably silly) horn or calling out to let people know of your presence. This ensures they don’t back into you or come to a sudden stop (unless lap-dancing with strangers is your fetish).

Take careAs well as looking out for people, be aware of their furniture, floors, walls and water-features. Wheelchairs are much more damaging than people, as our house has found out to its cost. I’ve caused more damage to the architraves, kick-boards and doors to our beautiful old house in the past 10 years than several generations of families have done in the 140 years before!

I’ve also found it’s just not worth taking risks. Both our bodies and our mobility devices are too costly to repair. Be very careful with holes, bumps, gradients and, in particular, gutter lips.

Also take care where you stop to chat to people or look at things. In the middle of doorways, footpaths or roads are definitely places to avoid. If it looks like you’ll be getting into a longer conversation with someone, see if you can find a convenient place where they can sit down and be at your level. That way you’ll both feel more comfortable.

In conclusion, we need to ask ourselves what we want when we are out on our wheelchairs or scooters. Surely it’s to be treated as fellow human beings and to be helped when we need it. To achieve this we need to be able to put others at ease, so that they are able to relate to us and are willing to help. Perhaps, sometimes, we need to think a bit more about treating others the way we would like to be treated. n

* Acknowledgements: Ideas for this article have been drawn from my own experiences (and mistakes), as well as the views of the able-bodied including family, friends, carers, health professionals, community transport drivers, accommodation providers and our local council’s Ageing and Disability Officer. Thanks to you all. For more articles by Bruce Mumford see Link Disability magazine or go to www.linkonline.com.au th

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www.msaustralia.org.au/actnswvic38 intouch winter 2012

The MS Library currently distributes a monthly e-newsletter to health professionals about upcoming education sessions, the latest MS-related news and new online resources. A similar e-newsletter will now be made available to our clients, their family members and carers.

To opt in to receive this monthly MS Library Update, please visit www.msaustralia.org.au/libraryopac.asp and click on the ‘Subscribe now’ box. Follow the prompts and you will begin receiving updates the following month.

LIFESTYLE

Spotlight on: MS LibraryThe MS Library is your one-stop-shop for all the latest information resources about MS and MS-related issues, such as current research, symptom management, complementary medicine and wellness.

The MS Library is based at the Nerve Centre in Blackburn, Melbourne and is staffed by a professional librarian. The library provides current, relevant information about MS and related topics of interest to people with MS, their families, health professionals, students and anyone with an interest in MS.

Library staff can provide up-to-date information about MS in a variety of formats. Our collection includes printed books, medical and scientific journals (electronic and hard copy), online resources, e-books, videos and DVDs.

How can I access the MS Library?The MS Library is open to the public and is staffed from 10am to 1pm, Monday to Friday. To access the MS Library, you can:l Visit the library in person and peruse the collection or

talk to our friendly staff. The library is located at the Nerve Centre, 54 Railway Rd, Blackburn Victoria.

l Search the MS Library catalogue at www.msaustralia.org.au/libraryopac.asp and then contact the MS Library via email or phone to submit a request to loan or view the resources you are interested in.

If you are a regular user, we suggest you contact the MS Library, using the details at the end of this article, and have them set up a ‘borrower record’. You will be assigned a user name and password that will allow you to log into the library catalogue so that you can quickly and easily place holds on items, update your contact details, change your password and view your borrowing history.

Books, videos and DVDs are available to loan for a period of three weeks (or two weeks if the item is in

demand). The return date is generally calculated from the time it is anticipated you will receive the resource and is noted inside the back cover of the book. If you would like to renew a loan, contact the MS Library before the due date. Resources may be returned by hand to the MS Library or posted to the library in the reply paid envelope provided.

Copies of journal articles or other electronic resources can also be printed and sent to you.

What if I don’t know where to start?If you are looking for the latest information and resources on specific, in-depth MS-related topics, the MS Library is able to conduct a literature search on your behalf. Contact the MS Library on the details below.

Please note that for general MS questions, and enquiries related to other MS Australia – ACT/NSW/VIC services, please contact MS Connect on 1800 042 138.

It is our aim to respond to all enquiries within 24 hours (business days), but the time it will take to fulfil requests may vary according to the availability of resources. Our staff will communicate the expected timeframes during initial contact.

How can I contact the MS Library?Phone: Contact 1800 042 138 (FreecallTM) and request to be put through to the MS LibraryFax: (03) 9845 2777Email: [email protected]: www.msaustralia.org.au/libraryopac.aspMail: Private Bag 900, Blackburn Vic 3130 n

Sign up to receive our free monthly MS Library Update email newsletter

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WHAT’S NEW: MS-RELATED RESOURCESCheck out the latest resources, sourced by the MS Library.

To borrow books or for assistance in accessing online resources, please contact the MS Library via MS Connect on 1800 042 138, or email [email protected]

E-BooksThe MS Library has a small collection of e-books which are available for loan and can be accessed if you have a computer and internet connection.

E-books can be read on either a computer, e-reader or smartphone. Like lots of technology, not all e-books are compatible with all e-readers. The e-books that we have purchased are not compatible with Kindles and some other proprietary e-readers, but they can be read on the majority of other e-readers and on computers, iPads and many smartphones.

If you would like to access our e-book collection please contact the MS Library.

Working for me: Research in understanding & treating progressive MS

This webcast, produced jointly by the US National MS Society and the MS Society of Canada, begins by explaining the difference between relapsing-remitting, secondary progressive and primary progressive MS. It features people with MS, researchers and neurologists.

A researcher from the University of Illinois explains the various benefits of incorporating exercise into daily life and gives details about one of their current, related research studies.

In addition, a current clinical trial exploring whether the current disease-modifying drugs can impact the transition from relapsing-remitting MS to secondary progressive MS, is explained.

This webcast includes sections such as: what is MS?; areas of research; imaging; risk of progression; epidemiology; causes of progression; symptom management; and global research efforts.

Happily Disabled: Overcoming unhappiness in disability

Marzipan and Magnolias

Stuart Rose self-published Happily Disabled this year because he wanted the book to be freely available to people with MS. Stuart writes about the different aspects of disability he has encountered throughout the 33 years he has lived with MS.

Stuart was diagnosed with MS in 1978 and had relapsing-remitting MS for 15 years, at which point his disease shifted to secondary progressive MS.

This book has been endorsed by a British MS specialist nurse, a UK MS Society support officer and an occupational therapist. Topics covered include caring; mobility; managing symptoms; anger; relationships and family; depression, loneliness and lows; and happiness.

This engaging book will be of interest to people with MS and their families, especially anyone interested in the experiences of a man living with MS.

This humorous memoir follows the author’s relationship with her mother and includes an account of how she was diagnosed with MS, her initial reaction to the diagnosis, and how writing helped her come to terms with the illness.

Elizabeth had her first exacerbation when she was living in Germany but wasn’t diagnosed until she had her second exacerbation, 12 years later.

The author also lived in New York for several years with her husband and two children and this is where she attended a writing course, which gave her the confidence to pursue her writing.

This book is the winner of the inaugural Finch Memoir Prize. Selected for its literary quality, Marzipan and Magnolias was applauded by the judges for the author’s portrayal of a mother–daughter relationship.

By S RosePrivate online publicationWebsite: www.happilydisabled.com

By E LancasterFinch PublishingWebsite: www.elizabethlancaster.com.au By the US National MS

Society and the MS Society of CanadaWebcast: Visit www.youtube.com and search for the title

Documents

InTouch Winter 2012 - MS