Practical advice and personal stories from children ... - MS Australia

The Official Magazine of MS Australia – ACT/NSW/VIC 

www.msaustralia.org.au/actnswvic 

ISSN 1833-8941 

Print Post Approved: 

PP 255003/08108 

Autumn 2011 

Common MS diets: 

A snapshot 

Is MS hereditary? 

Your guide to fire 

prevention at home 

Growing up 

with MS 

Practical advice and personal stories 

from children, siblings and parents 

World MS Day & 

MS Awareness Week 

25 May – 5 June 

New column: 

MS Advisory Council 

Updates and initiatives

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

Editor: Rebecca Kenyon 

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: intouch@msaustralia.org.au 

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 

32 

Victoria 

The Nerve Centre 

54 Railway Road 

Blackburn VIC 3130 

Tel: (03) 9845 2700 

Fax: (03) 9845 2777 

MS Connect TM (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. 

11 

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-forprofit 

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. 

28 06 

© Multiple Sclerosis Limited 2011 

2 intouch autumn 2011 

www.msaustralia.org.au/actnswvic

Contents 

CEO’s Message 

16 

34 

FEATURES 

9 2011 MS Awareness Week 

Mark your calendars 

for World MS Day and 

MS Awareness Week activities 

11 My Story: 

Motivated by a Goal 

David Stratton challenges his 

MS and attends the gym for the 

1,000th time 

12 Special: Growing up with MS 

• In a child’s eye… 

We explore the increasing 

incidence of childhood MS 

and provide practical advice 

to affected families 

• When a parent has MS… 

Services, support and 

advice for children of 

parents with MS 

MS COMMUNITY 

23 All for a Good Cause: 

How to get involved in 

community fundraising 

24 Volunteers in Action: 

Helping to make a difference 

26 Peer Support: 

Supporting our youth 

27 Support Group Profile 

28 MS Ambassador Profile: 

Meet Mary-Ann Germain 

HEALTH & WELLNESS 

30 Get Active: Health promotion 

activities to help you stay well 

32 Feature: Food for thought – 

common MS diets 

34 Spotlight On: 

Exercise physiologists and 

therapists – how they can help 

LIFESTYLE 

36 Play it Safe... 

Tips for fire prevention and 

emergency planning at home 

REGULARS 

5 Your Say 

6 News 

10 Q&A 

20 Events 

22 MS Readathon 

29 Take Charge of Your Health 

39 New Resources 

Welcome to our first edition of Intouch for 2011. I would like to take 

this opportunity to wish you a happy, safe and healthy year ahead. 

Unfortunately, the New Year did not start well with the floods in 

Queensland, northern NSW and Victoria, and the raging bush fires in 

Western Australia. We are doing our best to assist those 

in the MS community who have been affected by these events. 

If you do need our support, please contact MS Connect on 

1800 042 138 and we will determine how we can best help. 

In good news, I am pleased to announce the opening of our 

new supported accommodation facility at McKinnon in Melbourne’s 

south east. The home is specifically designed to accommodate 

six people with MS. You can read more about this exciting new 

development on page 7. 

It is my pleasure to introduce a new regular column in Intouch by 

Andrew White, Chair of the MS Advisory Council (MSAC). MSAC is 

a group of people living with MS who represent the needs and views 

of people with MS, their family members and carers. MSAC report 

to the MS Australia – ACT/NSW/VIC Board and through this new 

column, Andrew will share with you the latest news and initiatives 

from the Council. 

Also in this edition, we explore the impact of MS on children. 

It can be difficult for a child of a parent with MS to understand 

why Mum or Dad aren’t well, and there is an increasing incidence 

of paediatric MS, with our youngest client being just six years of 

age. Articles in this edition of Intouch will provide you with useful 

information about managing some of the challenges your young 

ones may face. 

Finally, World MS Day will be celebrated globally on 25 May, 

followed by MS Awareness Week in Australia. 

A week full of activities will again culminate in the MS Walk and 

Fun Runs being held in Sydney, Melbourne and Canberra on 

Sunday 5 June. Find out more about the events taking place on 

page 9. 

I hope you enjoy the first edition of Intouch for 2011. 

Bill Younger 

CEO, MS Australia – ACT/NSW/VIC 

Thank you and Farewell to an Inspiring CEO 

Since the time of writing, our CEO Bill Younger has decided to hand 

over the reins after six years. Bill has been responsible for the smooth 

merger of, firstly, the NSW and Victorian MS Societies and, more 

recently, the merger with ACT. Bill’s passion for the MS cause will be 

dearly missed. The Board and staff would like to thank Bill for all he 

has achieved, and are committed to building on this strong foundation. 

Head of Corporate Affairs Ken Sharpe will act in the position while the 

Board undertakes an executive search for the next CEO. 


autumn 2011 intouch 3

JOIN CLUB MS TODAY 

Editor’s Note 

Welcome 

to the first edition of Intouch for 2011. I hope you all 

had a wonderful festive season and can now enjoy the cooler weather as the 

autumn leaves begin to fall. 

You may recall that our Autumn 2010 edition of Intouch focused on 

‘Parenting and MS’, so it was felt that a follow up on ‘Growing up with MS’ 

was in order. An increasing number of children are being diagnosed with MS 

and many children who have a parent with MS have an important role to play 

as families learn to live with the disease. As such, we discuss both of these 

issues, providing useful strategies, resources and avenues of support that can 

help children growing up with MS to live full and happy lives. 

Interestingly, when this theme was set, I did not know that this would be my 

last edition before taking leave to start my own little family. My husband and 

I are expecting our first child in April, which is wonderful and exciting but, of 

course, comes with its fair share of uncertainty and anxiety. 

Having, myself, been affected by chronic illness as a teen and young 

adult, this naturally brings up emotions and concerns about my children 

being affected in the same way. With little research to draw on, I can only feel 

blessed to have been given the opportunity to bring a new life into this world 

and, as my parents imparted, to provide the unconditional love and support 

that will hopefully see my child through life’s biggest challenges. 

I plan on returning to MS Australia – ACT/NSW/VIC following my leave 

and in the mean time, Intouch will continue in the hands of the experienced 

Communications Team. You can still contact us on (02) 9646 0725 or email 

intouch@msaustralia.org.au 

I hope you enjoy this edition of Intouch and I wish you all good health and 

happiness for 2011. 

Rebecca Kenyon 

Editor 

Follow us online 

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

HELP US FUNDRAISE $750,000 

FOR PEOPLE LIVING WITH MS 

Drive away or jet off to play! 

The 2011 Melbourne Summer Cycle offers you a unique opportunity 

to explore marvellous Melbourne in the summer time. Join 7,000 other 

cyclists on Feb. 20th to ride the city streets and iconic West Gate Bridge. 

Be part of an amazing experience with family and friends, then relax after the ride 

and take in the live entertainment and food stalls – the perfect end to a fun-filled 

and rewarding day! 

Show your support and raise vital funds for people living with multiple sclerosis. 

Register online now! www.melbournesummercycle.org.au 

want to get involved? don’t have the pedal power but still want to be a part of the action? 

MS australia is currently looking for enthusiastic volunteers to join our team. these positions 

The lucky winner of the MS Autumn Art Union will 

have just one dilemma – do you drive away in the new 

VW Tiguan Compact SUV or do you jet off on a 

25-night luxury trip to North America? 

include course marshal, site marshal, assisting with ‘enter on the day’ registrations, assisting 

with processing our ‘pre-paid entry’ registrations, information desk, roving information, 

merchandise, equipment and signage. You are never too old or too young to help out with 

the Melbourne Summer cycle. to complete an application form online, please visit www. 

melbournesummercycle.org.au or call (03) 9845 2770. 

MULTIPLE SCLEROSIS LIMITED ART UNION 211 

Please Help & Order Your Tickets Today! Art Union 211 

PHOne FReeCALL: 1800 287 367 or (02) 8299 0100 

if outside ACT/nSW/VIC 

BY MAIL: 

Multiple Sclerosis Limited, Locked Bag 7001, Marrickvi le, NSW 1475 

FAX: (02) 9559 6932. 

BUY TICKeTS OnLIne: www.msraffles.org.au 

eMAIL: mslraffles@msaustralia.org.au 

TOTAL VALUe OF ALL PRIzeS IS $47,030 

Getaways to the Whitsunday Coast and picturesque 

Phillip Island are also up for grabs for two runners up. 

The total value of all prizes is $47,030! 

Public draw Friday 1st April 2011 at 11.00am at Multiple Sclerosis 

Limited, 2a/10 Carrington Road, Marrickville, NSW 2204. 

Winners wi l be notified by telephone and mail and the results wi l 

be published on www.raffleresults.com.au & www.msraffles.org.au 

on 4th April 2011. 

TICKET ORDER FORM 

Art Union tickets start from as little as $15. Buy yours 

for a chance to win and help MS Australia provide vital 

support and services to people living with MS! Tickets 

are strictly limited so the odds of winning are great. 

The competition is drawn on 1 April. 

Permit number: ACT R 10/00388.1 • nSW GOC/AU/1246 • VIC 11517/10 

PROMOTeR: 

Bi l Younger, Multiple Sclerosis Limited, Lidcombe NSW 2141 

YES! I would lIkE to buY art unIon tIckEt(S) 

1 ticket: $15 2 22 tickets: $200 tickets: $25 33 tickets: $300 5 tickets: $50 44 tickets: $400 8 tickets: $75 55 tickets: $500 

11 tickets: $100 16 tickets: $150 

name: I would like to join club MS 

address: State: Postcode: 

Phone (H): Phone (w): Phone (M): 

Email address: Enclosed is my cheque/money order for $ Please make cheques payable to Multiple Sclerosis limited 

or debit my credit card: amex Mastercard Visa credit card no: 

cardholder’s name: Expiry date: / Signature: date: 

Permit number: ACT r 10/00388.2 • NSW Goc/au/1246 • VIC 11517/10 Please do not send me any further mailings 

CLOSIng dATe FOR TICKeT SALeS: 9.00AM 1ST APRIL 2011 PRIze dRAWn: 11.00AM 1ST APRIL 2011 

DRAW LIMITED TO 30,000 TICkETS! 

PReVIOUS WInneRS 

Art Union 208 draw held 24th September 2010. 

prize Henry no 13664 

2nd prize 3rd Ms M Gittoes Mr F. Entry Club MS prize Mr C. Towers Ms J. Simpson Entry no 5048 

Entry no 16763 

Entry no 9409 

COngRATULATIOnS 

to the winners and thank you to a l who bought tickets and sponsors 

who provided prizes. 

Multiple Sclerosis Ltd ABN 66 004 942 287 

PHOne enqUIRIeS: 1800 287 367 or (02) 8299 0100 if outside ACT/nSW/VIC 

MAIL: Multiple Sclerosis Limited, Locked Bag 7001, Marrickvi le, NSW 1475 

BUY TICKeTS OnLIne: www.msraffles.org.au eMAIL: mslraffles@msaustralia.org.au 

Destination photos: www.thinkstock.com / automotive images shown in this brochure may di fer from actual prize. 

Your chance to win a north american 

LuxurY trip or a Vw tiguan compact SuV 

Giving Life Back 

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



ISSN 1833-8941 


PP 255003/08108 

2009 Go for Gold 

ISSN 1833-8941 


PP 255003/08108 

Great 

Your Say 

Thank you for sharing your stories, tips and feedback. 

We’d love to hear more! 

Write to us at intouch@msaustralia.org.au or post your letter to ‘Intouch’, PO Box 210, Lidcombe NSW 1825 

Freedom to ride 

Having lived with MS for 35 years, I usually use a walking 

stick and need some help from others to get around. 

However, I recently travelled to New York to visit family and 

decided that I needed to have some level of independence. 

I found it relatively easy to hire an electric scooter, 

which was delivered to the apartment, and I found an 

‘Accessibility Guide’ on the New York City website. This 

enabled me to spend many hours in the parks with my 

grandchildren, visit their schools, museums and shops, and 

just feel the exhilaration of this vibrant city. For the first time, 

I was able to see all of Central Park and the Riverside Park, 

which, even for the fittest, is a challenge. 

I returned home feeling exhilarated, having travelled 

across the world alone and achieving this wonderful 

adventure. My message to others is that ‘you can do 

it too!’ With some forward planning, travelling is a very 

rewarding experience. My family were very proud of me 

and my grandchildren thought it rather exciting to have Nan 

on a scooter instead of walking at a ‘snail’s pace’. 

I just wish I had tried something like this years ago 

instead of thinking I needed to have someone to assist me. 

Anon, via email 

Staying connected 

I enjoy reading Intouch, which arrives at my Melbourne 

address but is forwarded to me in Malaysia. I was 

diagnosed with MS five years ago while working as a 

volunteer teacher in Malaysia. A year at home getting well 

gave me itchy feet again and I have been back teaching 

in Kuala Lumpur for four years now. I’m normally one of 

those people who don’t get too involved in MS issues, 

breakthroughs and so on but, thanks to my family, I still get 

all the MS support and knowledge I lack in Malaysia. 

Not only does my sister Molly read up on MS and pass 

information on to me, my amazing 13-year-old nephew 

Jasper rides in the Sydney to the Gong MS Bike Ride. Over 

the last two years he has raised thousands of dollars for 

MS. It makes me feel proud that my family takes such an 

involvement, especially given I am overseas. 

While my aim is to keep working and maintain my health, 

Molly and Jasper deserve a huge thanks from me for all 

their involvement on my behalf. 

G. Reid, via email 

36 intouch summer 2010 www.msaustralia.org.au/actnswvic 

summer 2010 intouch 37 

LIFESTYLE 

A conscious consumer 

It was great to read about the ingenuity and achievements 

of those awarded Go for Gold Scholarships in the Summer 

2010 edition of Intouch. I would like to support businesses 

such as these that are run by Australians with MS. Is there 

a registry of such businesses I can refer to so that I can 

become a more conscious consumer? 

Helen, via email 

Editor’s note: Thanks for your note Helen. Our scholarship 

winners are certainly inspiring. Unfortunately, we don’t 

currently maintain a list of businesses run by people with 

MS. However, we have included more detail about each of 

our Go for Gold winners (past and present) on our website 

at www.mssociety.org.au/go-for-gold.asp. If you would 

like to be connected with any of our winners, please call MS 

Connect on 1800 042 138 and we will endeavour to assist. 

Write in to WIN! 

Keep your feedback and stories 

coming in. Next issue’s theme 

will focus on ‘Vision and MS’. 

The Official Magazine of MS Australia – ACT/NSW/VIC 

www.mssociety.org.au 

New-look 

Magazine! 

Beat 

the 

Heat 

Summer 2010 


How to stay cool and 

safe this summer 

Autumn 2010 

Each reader to have their letter published has won an 

Organic tea and chocolate 

indulgence pack 


NEWS 

Oral Meds Update 

Below is the latest information 

regarding oral medications in 

the pipeline: 

Movectro® (cladribine tablets): 

Following approval by the 

Therapeutic Goods Administration 

(TGA) last year, a ‘familiarisation’ 

program commenced in January 

and some people in Australia 

are now taking cladribine. The 

application for a Pharmaceutical 

Benefits Scheme subsidy for 

cladribine tablets is listed for 

consideration at the March 

meeting of the Pharmaceutical 

Benefits Advisory Council. 

Gilenya® (fingolimod tablets): 

Approved by the TGA in February 

for use by people with relapsingremitting 

MS in Australia. Details 

of cost and access schemes are 

yet to be released. Applications in 

Europe are proceeding. 

Ampyra® (fampridine tablets): 

No news in Australia, although an 

application for approval in Europe 

has been turned down. 

Go for Gold 

Scholarships: 

Apply Now! 

Applications are now open 

for the 2011 Go for Gold 

Scholarships. Thanks to the 

generous support from the 

24 Hour Mega Swim Program, 

last year the scholarships helped 

change the lives of 65 people 

living with MS. 

We encourage all people 

with MS in the ACT, NSW and 

Victoria to apply. Applications 

close 30 June, so don’t delay. 

For more information about the 

scholarships or to download 

an application form, visit www. 

mssociety.org.au/go-for-gold.asp 

or call 1800 042 138. 

Pedal Power 

On Sunday 20 February, close to 5,000 cyclists took to the streets to pedal 

for a cause as part of the 2011 Melbourne Summer Cycle. Participants of all 

ages and abilities geared up for the ride, from family groups to corporate teams; 

serious cyclists to recreational riders. 

A range of fundraising strategies were used to great effect, from simply 

sending emails to friends and family, to online social networking and staging 

local fundraising activities before the event. To date, more than $550,000 has 

been raised for people with MS. Top fundraising teams included Form 700 and 

Keilor Cares, with Swan Hill Supporting MS leading the field, with 99 members 

and a tally of $48,630 raised. Erin Ede, Abby Johnson and MS Ambassador 

Danny Potter were among the highest individual fundraisers, with Peter James 

coming out on top with an outstanding $25,830! 

MS Australia – ACT/NSW/VIC would like to thank the Events Team and all of 

our fundraisers, sponsors and volunteers who put in an exceptional effort. You 

all helped make the 2011 Melbourne Summer Cycle a great success! n 

MS Supporters Honoured 

Three of our most steadfast and dedicated supporters were rewarded with 

Australia Day honours this year. Australian of the Year Simon McKeon was 

founding chair of our research arm, MS Research Australia, and a long-time 

champion of our cause. Simon’s wisdom and business expertise has helped 

shape and develop MS research in Australia to an unprecedented level. As a 

person with MS, he embodies the contribution that so many people living with 

this disease continue to make to our nation. 

Stephen Niall King (known to us as Niall) was honoured with the Medal of the 

Order of Australia (OAM). As one of our most active and generous volunteers, 

Niall’s hard work has lead to numerous improvements to our residential care 

facility in Lidcombe. 

Our congratulations also go to Sue Gavel, who was named Leeton Shire 

Council Citizen of the Year. Sue and her husband John have anchored our 

Murrumbidgee Irrigation Area Branch for the past 15 years, putting in thousands 

of hours in support of our cause. 

“These three people, in very different ways, embody the MS community 

spirit,” commends Bill Younger, CEO of MS Australia – ACT/NSW/ACT. 

“Whether our supporters are working on a national level as Simon has, or on a 

local level like Niall and Sue, they make their mark in a very real way.” n 



NEWS 

News from MSAC 

By Andrew White, MSAC Chair 

New Accommodation Facility Opens 

A new shared supported accommodation facility in 

McKinnon, Victoria was officially opened on 23 December. 

Built in response to the Young People in Nursing 

Homes, my future my choice initiative, McKinnon provides 

contemporary accommodation (pictured) to six young 

women living with MS, close to a popular shopping 

precinct and train services. 

The accommodation focuses on a holistic approach 

to care through the provision of a healthy home-like 

environment where residents feel safe, secure and 

supported, and where opportunities and choice are 

routine. Australian Home Care, who currently partner 

with MS Australia – ACT/NSW/VIC in shared supported 

accommodation and respite for the neurological and 

progressive neurological group, provides the care services 

to McKinnon residents. n 

Top Journalism Gong 

for Disability Program 

We would like to congratulate John 

Blades, a person with MS and producer 

of world-renowned radio program, The Too Hard Basket, 

for taking out one of Australia’s top journalism honours at 

the 2010 Walkley Awards in December last year. 

“Attending these awards was truly the greatest 

experience of my life,” says John. “With the awards being 

televised and mention made of my MS, I hope that this 

has helped raise awareness of the disease and the work of 

MS Australia – ACT/NSW/VIC.” 

The following day, John also took out the 2010 Human 

Rights ‘Radio Award’. 

Congratulations John for all that you have achieved and 

continue to do for others living with MS. n 

New Carer Resource 

Carers NSW has developed a new online resource 

for carers, the Carer Life Course. This interactive 

course identifies six phases of caring that most 

carers go through, while providing relevant 

information, support and resources. To access the 

course, visit www.carerlifecourse.org.au 

Welcome to this new regular update from the 

MS Advisory Council (MSAC). As the Chair of MSAC, 

I am delighted to be able to communicate our 

initiatives and achievements to others with MS, and 

engage you in our activities. 

There is clear evidence to support the positive 

impact that strong community consultation and 

engagement can have on the quality of services 

delivered by organisations such as MS Australia. As 

such, MSAC has been in place for a number of years 

to provide the MS Australia – ACT/NSW/VIC Board of 

Directors and management with the views of people 

with MS, their family members and carers. 

Last year presented an opportunity for MSAC 

to review its Charter going forward. This involved 

looking at ‘best practice’ for consumer engagement 

and consultation; a full review of member roles; 

recruitment of new members in Victoria; and planning 

for future projects. Key to this work was ensuring 

that the Council remains well placed to achieve its 

major objective – to accurately and actively reflect the 

perspectives of people with MS, their families and 

carers. 

This year, the Council will initially focus on achieving 

much wider engagement with the MS community 

across the ACT, NSW and Victoria. To do this, new 

Council members will be sought and appointed from 

ACT and NSW. Please look out for our advertisements 

calling for expressions of interest to fill these roles. 

Importantly, the Council is also building a diverse 

network of representatives from the MS community to 

be involved in projects and consultation that will assist 

us in providing the MS Australia – ACT/NSW/VIC 

Board and management with the most representative 

and insightful feedback. We welcome the involvement 

of all in the MS community and encourage you to 

register your interest to get involved by visiting 

www.msac.org.au and following the links to ‘register’. 

Your details will be kept private and will only be used 

for the purposes of MSAC. 

Finally, other projects the Council has in the 

pipeline for 2011 relate to people newly diagnosed 

with MS, carers and potential new treatments. In 

conducting these projects, we aim to gather many 

and diverse perspectives and provide the most 

insightful and meaningful input and feedback from 

our community. 

We will be delighted if you can join us in this work 

as we believe that it will ultimately make a significant 

difference to all within the MS community. To contact 

us, please email advisorycouncil@msaustralia.org.au 



NEWS: ADVOCACY 

At the launch: Pilot participant 

Michelle Brown with her 

husband (right) and Minister 

Peter Primrose. 

Positive Results for NSW 

Continuous Care Pilot 

Positive results from the NSW Continuous Care Pilot 

were launched at Parliament House in December, by the 

NSW Minister for Ageing, Disabilities, Youth and Volunteers 

Peter Primrose. The detailed evaluation findings from 

this project build on those already established by the 

Victorian Continuous Care Pilot completed in December 

2009. Together, these pilots form a compelling case for 

a specialist neurological care coordination model to be 

introduced in both states. 

To recap, the Continuous Care Pilots (CCPs) trialled a 

new model of care for people with progressive neurological 

conditions who are at risk of being placed in a residential 

care facility (nursing home). Funding was provided by the 

state governments under the Young People in Residential 

Aged Care program in NSW and the Young People in 

Nursing Homes, my future my choice initiative in Victoria. 

MS Australia – ACT/NSW/VIC provided additional 

funding to support major evaluations of each pilot. The 

independent evaluations of these pilots found that this was 

a successful and important new model of care to prevent 

younger people with progressive neurological diseases 

being placed in nursing homes. 

“While actively campaigning to get young people out 

of nursing homes, we were acutely aware of the need 

to find better ways of assisting people to be supported 

at home and avoid the risk of placement in aged care,” 

says Alan Blackwood, Policy Manager at MS Australia. 

“By combining community care services with clinical 

input through a specialist coordinator, the projects clearly 

demonstrated that it is possible for people with complex 

needs to remain at home with their families if care 

programs are individually tailored and well-timed.” 

“Some of the key findings were that meeting needs as 

they emerge and supporting families are critical to success. 

Both projects pointed to the importance of working closely 

with individuals and families in care planning. Nearly half 

the participants had dependent children, adding to the 

imperative for people to stay at home.” 

Michelle Brown was one such participant. Diagnosed at 

28 with two young children, Michelle spent much of her first 

year with MS in hospital. “Like every young mum, I want to 

live at home and be the best mother and wife I can possibly 

be,” she says. “I don’t want to be a patient and, most of all, 

I don’t want to go into an aged care facility. 

“As soon as I joined the Continuous Care Pilot, and was 

assigned a team of experts to manage my symptoms at 

home, things really started to change. The team kept in 

close contact with one another, sharing information about 

me and my circumstances, so I never really needed to 

reach out for help. It was just there.” 

The findings of both pilots are being examined by federal 

and state government agencies. MS Australia – ACT/NSW/VIC, 

along with other organisations representing people with 

progressive neurological conditions, will continue to press 

for the introduction of this approach across both states. n 

Policy Updates: 

Disability Care and Support Inquiry 

The much anticipated interim report for the 

Productivity Commission inquiry into the feasibility of a 

national disability funding scheme has been released 

and is available at www.pc.gov.au/projects/inquiry/ 

disability-support. MS Australia will be responding 

to the interim report in the inquiry’s second round 

consultations. For the latest updates on this inquiry, 

please visit www.msaustralia.org.au 

National Carer Strategy 

The Federal Government is developing a 10-year 

strategy to improve government programs for carers. 

Carer recognition legislation is also being set across 

Australia. 

The strategy is still in development and will include 

elements that cover employment, information, services 

and carer recognition. MS Australia is contributing 

to the strategy and has recommended specialised 

employment support programs for carers, giving all 

carers the legislated right to request flexible working 

arrangements and access to a personal injury 

insurance scheme to cover them for injuries sustained 

through providing unpaid care. For more information, 

visit www.health.gov.au/nationalcarerstrategy 



MS Awareness Week 

Mark your calendars: 25 May – 5 June! This year’s 

World MS Day and MS Awareness Week has something 

for everyone. Here are just some of the activities you 

can get involved in. Keep checking our website for 

more details. 

Education and 

Awareness Activities 

MS Australia – ACT/NSW/VIC will host 

or take part in the following activities 

around MS Awareness Week. 

GP Conference and Expo (GPCE) 

20–22 May 2011 

Sydney Showground, Homebush NSW 

Rehabilitation for people with MS: 

Professional development seminar 

for allied health professionals 

25 May 2011 

Studdy MS Centre, Lidcombe NSW 

MS Research Update 

Keep up to date with the latest in MS 

research. Presentations by experts in 

MS research with the latest findings on 

a range of topics including clinical trials, 

genetics and vitamin D. 

28 May 2011, 9.30am – 12.30pm 

Macquarie University, North Ryde, NSW 

(and via live webcast) 

MS Walk & Fun Run: 5 June 

Running concurrently in Sydney, Melbourne and Canberra, this year’s 

MS Walk and Fun Run is set to be our biggest and best yet. Not 

only does this esteemed event help increase awareness of MS in the 

community, we are also aiming to raise over $1.1 million to support 

people living with MS. 

Team Gopez has been one of our top fundraising teams for many years. 

Lead by Annette Lopez (whose husband Perry has MS) the team has 

raised an amazing $180,000 to date. “Participating in the MS Walk and 

Fun Run is extremely rewarding for us,” says Annette. “We are very lucky to 

have the support of great friends and family, as well as the Mosman Daily 

and local businesses who have continued their support over the years. 

“The ‘Walk’ is one of the best initiatives for us because participants can 

choose from different levels of involvement. Some of our friends are great 

at raising money but don’t necessarily want to walk on the day, others 

love to put on the colours and really get into the atmosphere, and then 

there are the die-hard runners – overall, there’s something for everybody. 

“The main ingredient of our team’s success is that all of the members 

are walking for Perry. Perry never complains about his MS and is just the 

perfect husband, father and great mate to everyone. If you can duplicate 

that you will have a successful team and a wonderful day.” 

How can you get involved? 

l Enter by starting or joining an existing team.There are walk and run 

courses suited to people of all abilities. 

l If you’re unable to walk or run the course, why not ask a family 

member, friend or colleague to do so on your behalf? You can offer 

to help set up the team online, rally support and perhaps coordinate 

some more local fundraising to go towards the team’s total. 

l Support a team online and/or alert your family, friends and colleagues 

to such a good cause. 

l Have you considered volunteering? Call us to talk about the 

opportunities available. 

For more information, visit www.mswalk.org.au 

A number of information sessions, 

morning teas and other community 

events will take place in local areas. 

For the latest information about these 

events, check our website or call MS 

Connect on 1800 042 138. 

To receive updates and invites to 

MS events, please ensure we have your 

current email address. 

worldMSday 

Employment Focus 

Now in its third year, World MS Day 

– an initiative of the Multiple Sclerosis 

International Federation (MSIF) – will 

take place on 25 May. Continuing 

with the success of last year’s theme, 

‘Employment and MS’ will again be 

the main focus for the global MS 

movement in May. 

The MSIF has initiated a petition 

to encourage employers and policy 

makers to remove the obstacles 

preventing people with MS from getting 

or staying in work. An international 

survey is also exploring the policies and 

facilities that are in place to support 

people with MS and other chronic 

conditions. For more information, visit 

www.worldmsday.org 



Q&A 

Your MS-related, health and lifestyle 

questions answered. 

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

My partner was diagnosed 

with MS in June last year. 

I was told that MS is not 

hereditary, but this is still 

something that I am unsure 

of. Do we need to see a 

genetic counsellor if/when 

we are thinking about having 

children? Can a father pass 

MS onto his children? 

– R. Verrills 

Associate Professor David Booth*, one of 

Australia’s leading researchers in the field of MS 

and genetics, advises that genetic testing is not 

necessarily helpful for people with MS and their 

families. Given the complex interplay between 

genetics and environmental factors, he says 

there is little that can be learned from a genetic 

test that could not be discovered from a family’s 

history. 

Genetics are just one part of the picture 

when it comes to understanding why MS 

occurs in some people and not others. The 

most dramatic illustration of this comes from 

studies in identical twins. Where one twin has 

MS, the chance of the other twin developing 

MS is between 20–26 per cent. This means 

that even when all genetic variants are identical, 

the chance of determining accurately if a twin 

of someone with MS will develop the disease is 

no more than one in four. 

The chance of a person from the general 

population developing MS is around 0.1 per cent. 

For a person with one first-degree relative (a 

person who shares 50 per cent of their genes) 

who has MS, the risk is around two per cent 

which, despite being many times higher, is still a 

very low risk (i.e. about 49 in 50 such people will 

not develop MS). 

A/Professor Booth explains that the direct 

value of studying the genetics of MS is that it 

enables researchers to build knowledge of the 

important processes in the development of the 

disease. This allows them to develop therapeutic 

strategies based on this knowledge. 

It is advised that you discuss any concerns 

you may have about MS with your GP and/ 

or neurologist. They will provide you with 

information and support about your individual 

circumstances. n 

* Dr David Booth is an Associate Professor at the 

Westmead Millennium Institute for Medical Research. 

He is a research scientist studying the genetics of MS. 

Useful Resources: 

The resources below may help you 

to understand more about genetics 

and MS: 

l MS in Focus, Issue 8: Genetics and 

hereditary aspects of MS – www.msif.org 

l MS Essentials Factsheet: 

Genes and MS – www.mssociety.org.uk 

For more information about genetic 

counsellors visit: 

l Centre for Genetics Education – 

www.genetics.com.au 

If you are interested in participating in any of 

the research currently exploring the genetics 

of MS, there are two major studies you might 

like to investigate: 

l ANZgene – www.msra.org.au/anzgene 

l Ausimmune – http://nceph.anu.edu.au/ 

Ausimmune/index.php 

Thinkstock/iStockphoto 



My Story: Motivated by a Goal 

Living with secondary progressive MS and being unable to walk did not 

stop David Stratton from reaching his goal to attend his local gym for the 

1,000th time. He tells Rebecca Kenyon what keeps him motivated. 

The year was 1996. David Stratton 

was married with six teenage children, 

living in Canada, working as a 

university IT consultant, and regularly 

indulging in his passion for hiking in the 

mountains. However, when he began 

stumbling during his hikes, David’s 

Australian wife Ros suggested he see 

someone about it. 

Thinking it was simply due to 

walking through rough terrain, David 

made a visit to the doctor to ease his 

wife’s concern. However, the verdict 

was much more serious. An MRI 

revealed David has MS. 

While the diagnosis came as a 

surprise, David says his MS symptoms 

don’t tend to occur as suddenly. 

“Secondary progressive MS is slow 

and gradual, allowing me the chance 

to get used to things, but always 

getting worse. While Ros and I do 

grieve about what could have been, 

I tend to be a ‘glass half full’ kind of 

person, which helps.” 

Wanting to simply get on with life, 

the couple moved their family back 

to Australia later that year, settling in 

regional Victoria where David began 

work as a university lecturer. While 

his mobility became significantly 

affected, progressing to a point 

where he needed a walking frame 

and a wheelchair, David says he 

was fortunate to have a supportive 

employer and an appropriate 

occupation. “My boss ensured that 

the workplace was gradually adapted, 

with ramps and doors that opened 

automatically. For people with MS, it’s 

really important to do work that suits 

our disposition.” 

Strength in numbers 

Other than his love for hiking, David 

admits to never being one for ‘fitness’. 

“I was certainly no gym-junkie; in fact, 

I often considered myself a bit of a 

wimp. In those earlier stages of using a 

wheelchair, Ros could see how I really 

needed to heave myself up and that I 

lacked a lot of strength.” 

When a nurse mentioned that 

her brother ran a local gym, David 

decided that’s where he would go. 

With the help of his daughter Jo who 

has a background in sport science 

and physiology, David was able to get 

started. “She would come and review 

my gym program and work out new 

methods of torture for me,” David 

laughs. 

After a few years of visiting the gym 

twice a week, David realised that if 

he went four times a week, he would 

reach 1,000 visits around Ros’ sixtieth 

birthday. “The idea of a birthday gift 

kept me motivated – I was counting 

every visit to work towards that 

occasion. If I missed a visit, I would 

always make it up. The gift was very 

much something for both of us.” 

David was right on schedule and 

reached his goal on the Friday before 

Ros turned 60 in June last year. “We 

had a little celebration at the gym; it 

was covered by the local press and 

the gym gave me a cake and three 

months free membership, which was 

very generous of them. 

“Everything you read about the 

benefits of physical activity is very 

Sharing the joy: David with his wife 

Ros (left) and daughter Jo during the 

celebrations at his 1,000th gym visit. 

real. I definitely feel more positive and 

brighter about life. It also means I have 

retained my physical strength, so I can 

still do transfers (to and from the car, 

bed etc), get up off the floor on my 

own and so on. 

“I think the important thing for 

people with MS is to just start! Goalsetting 

can be great, too, especially if 

you need help staying motivated.” 

For the past year, David has used 

his wheelchair full-time, and in July 

last year decided it was time to retire 

from his job. Realising he would need 

more care, Ros also retired. “She is my 

strongest support. We are ridiculously 

in love so it works really well for us. 

However, respite for her is still very 

important. We have great friends and 

family who will come to care for me 

while Ros takes some respite, often 

heading out on wilderness walks to 

have some time alone.” 

The couple recently enjoyed an 

overseas trip to England and Canada 

where David took advantage of a 

new device called the Trail Rider. This 

enabled him to join Ros on a hike up 

the mountains and even snow skiing. 

Between trying to get a product like 

that into Australia and his work in 

the local community, David is never 

far from achieving even more life 

goals. n 

Would you like to share your story with other people living with MS? 

Contact the editor on (02) 9646 0725 or email intouch@msaustralia.org.au 



GROWING UP WITH MS 

In a 

child’s 

eye... 

With a growing number of 

children being diagnosed with 

MS, Rebecca Kenyon explores 

this phenomenon and seeks 

personal and professional 

advice for those families 

who are affected. 

While MS is now the most common neurological 

disease among young adults, we are also seeing an 

increasing incidence of early-onset MS in children. 

“Globally, between 10 and 15 per cent of people 

diagnosed with MS are under the age of 16,” confirms 

Associate Professor Andrew Kornberg, Director of 

Neurology at the Royal Children’s Hospital Melbourne. 

“The vast majority are aged between 10 and 16, with the 

percentage dropping to about three per cent for 

children under 10. While these figures may seem 

relatively small, the fact is that we are seeing more 

children diagnosed with MS than what we were, say, 

15 years ago.” 

So why is this happening? “If we look at many 

autoimmune diseases and their incidence in children, 

such as type 1 diabetes and Crohn’s disease, they have 

become more frequent over time. It is the same for MS,” 

explains A/Professor Kornberg. “There are a number 

of theories about why this is happening, such as: the 

tendency for Western cultures to be a bit ‘too clean’; the 

existence of new viruses; and environmental factors, such 

as the role of vitamin D. All of those may play a part. 

“Paediatricians are also more inclined to diagnose 

children because MS treatments are now available. Prior 

to 1997 we didn’t really have any treatments that made 

a difference, so we tended not to make the diagnosis. 

Nowadays, with a variety of new ‘effective’ treatments 

available, we do diagnose children as quickly as 

possible.” 

The impact of childhood MS 

Relapsing-remitting MS is the most common type of 

MS among children with the disease, says A/Professor 

Kornberg. For children above the age of 10, there is also 

a noticeable skew towards the number of females being 

diagnosed. 

The symptoms experienced by children with MS 

are very similar to those experienced by adults – pain, 

dizziness, fatigue, vision difficulties, challenges with 

thinking and memory and so on. “On a physical level, the 

impact of childhood MS can be much more significant 

simply because of age,” explains A/Professor Kornberg. 

“However, the biggest impact of MS can be on a child’s 

cognition. We know from research that MS can severely 

impact a child’s learning and cognition in comparison to an 

adult who has already done most of their core learning. On 

an emotional level, too, the whole family can be affected by 

the MS, so it is a significant and severe disease.” 

Keeping it under control 

The good news is that treatment, support and services are 

readily available to assist families to manage the physical, 

emotional and mental impact of MS. “The vast majority 

of children respond to immunotherapy treatment,” says 

A/Professor Kornberg, “but we also work with families to 

help them understand what the disease is, why treatment 

is so important, and where they can access the necessary 

support. When we’re talking to the kids, we naturally 

change the theory to a level they can understand.” 

iStockphoto/Thinkstock/Pixland 




“Paediatric neurologists tend to be much more holistic 

in helping children and their families manage MS. We have 

to look at the physical effects of the disease – relapses 

and so forth – but we look at the whole-of-life impacts 

as well. To do this, we involve a range of people, such 

as teachers and health professionals who specialise in 

working with people with MS. This ‘support team’ tend to 

be involved in the early stages with children because it’s 

more than just the relapses that can affect them. 

“Managing any long-term effects on cognition is 

particularly important for children with MS,” stresses 

A/Professor Kornberg. “A child’s neurologist needs to 

work closely with the parents and support team to 

identify the child’s strengths and weaknesses. 

“We’re also very diligent in looking for the impact on the 

child’s emotions (such as signs of depression and anxiety) 

and we get them the appropriate support immediately.” 

Considerations for teenagers 

As teenagers become more independent and have 

the added pressure of puberty and wanting to ‘fit 

in’, A/Professor Kornberg warns that they may think 

they have their disease under control and stop taking 

their medication. “Some may go into complete denial 

about their illness. Obviously this can have significant 

repercussions for the child, so it’s something parents 

and the child’s support team need to be on the look-out 

for. For example, parents should check in occasionally 

about how the child’s injections are going. Many kids will 

learn how to inject themselves, but checking that they’re 

injecting correctly and whether they are having any local 

reactions will often tell a parent whether the child is taking 

their medication properly. We also ask them to look 

out for emotional changes, such as whether the child is 

acting a little more subdued, withdrawn or having trouble 

sleeping. 

“It is also healthy for the teenager to have a friend or 

family member (other than their parents) who they can 

confide in about how they’re feeling.” Connecting with 

other teenagers living with MS could also help. The MS 

Australia – ACT/NSW/VIC Peer Support Program can be 

extremely beneficial. 

Accessing support 

A child’s healthcare team, along with Community Support 

Workers and allied health professionals from MS Australia 

– ACT/NSW/VIC will be able to assist parents who may 

need help with explaining certain aspects of MS and how 

a family can best live with the disease. To contact us for 

support, call our information line on 1800 042 138. 

Also, there are some great books, websites and other 

information resources available for children and their 

families living with MS. We have highlighted some of these 

throughout the following feature within this ‘Growing up 

with MS’ Special. One website that is particularly useful 

for kids and teens who have MS or know someone who 

does is ‘Young MS’, by the UK MS Society. Visit 

www.youngms.org.uk 

Research Insight 

Given the increasing incidence of childhood MS, 

the International Paediatric MS Study Group 

(IPMSSG) was formed in 2002 by a global network 

of neurologists, scientists, clinicians, representatives 

of international MS societies and other relevant 

organisations. 

Associate Professor Andrew Kornberg, Director 

of Neurology at the Royal Children’s Hospital in 

Melbourne, has been on the IPMSSG Steering 

Committee for the past seven years. “The aim of 

the group is to conduct clinical trials and research 

into why MS is happening in young children, and 

to educate the world about paediatric MS and best 

practice for treating it,” he says. 

For more information about the group, visit 

www.ipmssg.org 




Support for Siblings 

Case Study: 

Angela’s Story 

Age: 23 

Occupation: Student 

Siblings: 2 sisters and 1 brother 

Diagnosed with MS: Aged 10 

What was it like when you were 

first diagnosed with MS? 

I was eight years old when I had my 

first MS attack but I was officially 

diagnosed with MS two years later. 

The symptoms weren’t too bad at first 

but by the second year, I kept having 

regular attacks that affected my 

speech, vision and mobility. After two 

lumbar punctures and numerous MRI 

scans, I was eventually diagnosed. 

I remember being in Westmead 

Children’s Hospital and everyone 

swarming over me. It was pretty scary 

not knowing what was wrong, but I 

was also concerned about school. 

Spending so much time in hospital, 

all I could think was, ‘I don’t want to 

repeat’. 

I had never heard of MS before and 

neither had my parents. It wasn’t until 

I was about 12 that I became fully 

aware of what I have and what this 

means. MS Australia – ACT/NSW/VIC 

sent me a newly diagnosed kit and I 

remember reading along thinking ‘yes, 

that’s me’. I realised I wasn’t alone. 

Have you had a strong support 

network around you? 

Yes, my family provided wonderful 

support, and still do. I am the 

youngest of three but I am particularly 

close to my sister Josie who is just 

one year older than me. I think my 

parents and Josie took on a lot of the 

pressure. My parents are Lebanese, 

so for them, MS was even more 

foreign. In the Lebanese culture, illness 

is generally something that you keep 

to yourself. English is their second 

language, so understanding what 

was going on was very confronting 

for them. I think they learnt the most 

by just watching how the MS was 

affecting me. It was especially hard for 

them to explain to me how important it 

was to take the injections. 

MS Australia has also been an 

amazing support, especially when I 

was changing medications. A nurse 

would come to see me whenever I 

needed them to. 

How do you feel MS affected you 

as you were growing up? 

I didn’t have to repeat a grade at 

school, which was good. All of the 

teachers realised that when I was 

at school, I worked extra hard to 

catch up. 

I always felt like I couldn’t tell 

anyone else about my MS. You know 

little kids; they think that they’ll catch 

MS just by hanging around someone 

who has it, so I didn’t tell anyone until 

after year 12 when I hand-picked three 

friends who I wanted to know. They 

were really great about it. 

As a kid, it can be very frustrating 

not being able to do as much as other 

kids can. From an early age, I didn’t 

really take part in sport because it 

would just exhaust me. I learnt pretty 

quickly what I can and can’t do. I 

like to stretch my limits, but that isn’t 

always good for my MS. Stress can 

definitely flare things up for me. 

Like anyone, I do go through times 

when I’m in denial about the MS. 

Sometimes I don’t think about it at 

all and I let normal life take over. But 

there are moments when I think, 

‘why me?’ 

Has there been anything positive 

to come out of your experience? 

Yes, I’d always thought that I would 

like to do something with MS 

Australia; to give back what they 

have given to me. When I saw an 

advertisement calling for Peer Support 

Volunteers, I thought it would be a 

good opportunity. Now, it’s actually 

very rewarding. 

I like helping others realise that 

they’re not alone and that they’ll get 

through the challenges that MS throws 

at them. 

What would you like to achieve in 

the future? 

I like this feeling of being able to 

help other people. I am studying a 

Diploma of Community Services and 

doing work experience at the Wesley 

Mission, Youth Outreach Centre, so I 

think I’d like to do more of that. 

Thinkstock/Hemera 




Siblings of children with MS can also be significantly affected by their brother 

or sister having MS. “Siblings will often have concerns about their brother or 

sister who is unwell (why do they have to go to hospital; why do they have 

MS; why do they have to have injections?) and they worry about whether they 

will also get MS and when this might happen,” says A/Professor Kornberg. 

“Issues for siblings can also go as far as them feeling as though Mum and Dad 

are always more concerned about the child who has MS, rather than them. 

“Overall, it’s important that siblings also get the necessary support. We talk 

to families about making sure that everyone has their ‘special time with Mum 

and Dad’ and to encourage siblings to talk about their concerns. Foster open 

communication and explain to siblings in age-appropriate language what the 

MS is, that it’s not likely to happen to them, and it’s not their fault.” 

Siblings Australia is a national organisation committed to enhancing the 

wellbeing of siblings of children with disability and chronic illness. For more 

information, visit www.siblingsaustralia.org.au 

A Sister’s Perspective: 

Josie’s Story 

Age: 24 

Occupation: Ecomomist 

Relation to person with MS: Sister 

Started living with MS: Aged 11 

What do you remember about 

the time when your sister was 

diagnosed with MS? 

I remember my parents taking 

Angela to ‘Emergency’ on many 

occasions, seeing several doctors 

and undergoing extensive tests to 

find out why she was so sick. It was 

very scary and very stressful to see 

her like that and to be so helpless. 

I vividly remember the time 

Angela’s doctor was telling my 

parents that her attacks were 

consistent with MS. My parents 

were very distressed and worried 

about Angela and what this meant. 

Before that, all I knew of MS was that 

our school raised money for the MS 

Readathon, but I had no idea what 

MS actually was. That soon changed, 

as we all started researching to find 

out more about it and what we could 

do to help. 

MS has had a 

significant impact 

on everyone [in the 

family] but, on a 

positive note, it has 

made us stronger 

as individuals 

How has MS affected you 

growing up? 

MS has had a significant impact 

on everyone on a number of levels. 

Angela and I are very close in age; we 

have always done everything together 

and have always been best friends as 

well as sisters. It was tough seeing her 

so sick. Particularly around the time 

of an attack, Angela would require 

significant assistance with basic daily 

activities, like mobility and showering. 

Between attacks, there were daily 

injections, drug trials, doctor’s 

appointments, MRIs, physiotherapy, 

and catching up on her school work. 

It was extremely difficult to see her 

hospitalised so frequently and for long 

periods of time. My mum stayed with 

her in the hospital day and night. For 

a long time, this routine became 

normal for us. 

Obviously we all wanted Angela 

to be as healthy as possible, so we 

began taking extra precautions to 

help manage her symptoms. We 

would change our activities and stay 

indoors on hot days, we installed airconditioning, 

and found a tutor to help 

her catch up on school work, etc. 

More importantly, I would try to help 

her by providing emotional support, 

such as talking about things and 

keeping her motivated to work on her 

health and her recovery despite the 

setbacks. 

On a more positive note, the MS 

has made us stronger as individuals, 

especially Angela. She has grown into 

a mature and generous person with 

an admirable strength of character. 

She accepts the things life throws her 

way and overcomes any obstacle – 

always with a cheeky smile and with 

genuine optimism. She has a strong 

desire to help others like herself. I 

have much admiration and deep 

respect for my little sister and have 

learnt a lot from her approach in life. 

What advice might you give to 

other children who are living with 

a brother/sister who has MS? 

Put yourself in their shoes. 

Understand what it is to have this 

condition and then provide as much 

emotional support and assistance to 

help them cope with the challenges 

that arise. Make sure they are socially 

engaged with family, friends, groups 

and networks; be supportive and 

motivating; be there for them; and fully 

respect their independence. n 



When a parent has MS... 

While growing up with a parent who has MS can be challenging, accessing 

the right information and support will assist children and families to live 

happy and fulfilling lives, despite MS. 

MS is a reality for many children whose parents are living 

with the disease. Some children grow up always knowing 

their parent to have MS, while others experience the 

effect of a parent’s diagnosis when they are well into 

their childhood. 

For children who are born to a parent with MS, many 

aspects of living with the disease will seem fairly ‘normal’ 

compared with those whose lives suddenly change due 

to a parent’s diagnosis. Either way, parents will naturally 

question when to explain MS in more detail to their 

children. 

There is no right or wrong answer for when this should 

be, says Elizabeth Stanton, Clinical Psychologist at MS 

Australia – ACT/NSW/VIC. “A number of variables are at 

play, such as how the parent is coping with the MS and 

the nature and personality of the child (some may be 

more inquisitive and eager to find out more, while others 

may be anxious and frightened). It will also depend on 

the family dynamic; how educated the parent is about 

MS; the level of communication they have with their child; 

and how open they have been about MS symptoms and 

treatment over time. For example, an eight-year-old who 

has always seen her parent inject medication may not be 

as alarmed because she doesn’t know any different. An 

eight-year-old who is confronted with this for the first 

time is likely to react differently and may need support 

to adjust. 

“Overall, it’s important not to push and overwhelm the 

child,” adds Stanton. “Just like the parent who has MS, 

children will also need time and space to adjust. Parents 

can begin by providing small amounts of age-appropriate 

information and asking their child if they have any 

questions, giving them the opportunity to absorb it and to 

come up with additional questions in their own time.” 

Quick Tips for Parents 

How to help children adjust to, communicate 

about, and live well with a parent’s MS diagnosis: 

l Lead by example and foster open and honest 

communication. 

l Encourage children to use the MS Readathon 

or times when they are learning about the body 

at school to talk to their friends and/or ask you 

questions about MS. 

l Help kids understand symptoms in a practical, 

age-appropriate way. For example, get children 

to try tying shoe laces with socks on their 

hands or put on someone else’s glasses to 

imitate some common MS symptoms. 

l Encourage kids to think about their own 

strengths and weaknesses, and tell them what 

yours are. 

l Identify things that your children like to do with 

you, as well as things they like to do on their 

own or with friends. Encourage them to do 

these things and tell them what you enjoy doing 

with them as well. 

l Be honest about your limits but don’t always 

say ‘no’. Be creative and offer a compromise. 

l Plan weekly meetings with all family members 

to organise activities, solve problems, organise 

a daily routine, etc. 

l Prepare children for changes that will affect 

them. For example, explain what will need to 

happen if you have to go into hospital (e.g. who 

will take care of them). Let them express their 

fears and discuss solutions together. 

l Try to keep a sense of humour. 

Thinkstock/iStockphoto 




Mary-Ann Germain was diagnosed with MS 13 years 

ago, just five weeks after her second child was born. “I 

think the diagnosis was harder for me being a parent 

because, here I was with this tiny newborn and a toddler 

and all I could think was that I wouldn’t be able to raise 

my own kids. I had some dark days back then but now, 

here I am with one child doing the HSC, one midway 

through high school and we’re leading relatively normal 

lives, albeit with some adjustments. 

“Given how young my children were when I was 

diagnosed, they haven’t really known any different. 

They’ve seen me injecting medication from an early age 

and occasionally they would see me lurching around, 

slurring my speech or finding it difficult to write. When 

they were little, they used to find it quite funny. 

“As the kids got older they did ask a few more 

questions about MS, especially when they were learning 

about the body at school. 

“Being a parent with MS can sometimes bring a lot of 

guilt and concern about the welfare of your children as 

they are growing up. One of the hardest things for me 

was letting go and allowing other people do what I knew 

I couldn’t do. I just needed to adapt and accept the fact 

that I couldn’t do certain things, but I could make up for 

it in other ways.” 

What about children of newly 

diagnosed parents? 

“How children react to an MS diagnosis can depend on 

a number of different things – their age, the relationship 

they have with their parent who has been diagnosed, 

the family structure and dynamic, and so on,” explains 

Elizabeth Stanton. 

“The normal and expected emotions a parent with MS 

will go through will also apply to their partner and children, 

and perhaps other friends and family members as well. 

These can include anger (why can’t I go to the park; why 

can’t Mum be just like other mums?); fear (what is going to 

happen?); guilt (is this my fault?); sadness and loss (Mummy 

just can’t do the things she used to do). Any or all of these 

emotions can be experienced at any time throughout the 

child’s upbringing. 

“A diagnosis of MS is a difficult time for everyone, 

especially the person with MS. How the parent reacts to 

their own diagnosis and how they express this can also 

affect their children. 

“Some parents try to protect their children by not 

telling them about a diagnosis or what is going on. In 

some circumstances this is okay, especially where the 

parent is still trying to come to terms with it themselves. 

However, when parents are open and honest about what 

is happening – by using age-appropriate language and 

keeping communication open – the parent is letting the 

child know that it is okay to talk about things if they are 

feeling frustrated or scared.” 

Mary-Ann, who is also a child psychiatrist and one of our 

MS Ambassadors (see her profile on page 28), has found 

that being upfront and a little creative with her kids has 

been beneficial. “I have always been honest with my kids 

about what I can and can’t do, but I won’t always say ‘no’ 

to them either; I’ll offer an alternative. 

“In general, I find my children are more accepting of 

people with illness and disability, making them stronger and 

better people,” adds Mary-Ann. “Teenagers, especially, can 

be inherently selfish, but MS has actually made my kids 

more considerate and understanding at a younger age. 

They’ve also realised early on that they can’t always do 

what they want, which is healthy for children to learn.” 

“Overall, it is important that the parent is coping with 

their illness,” concludes Elizabeth Stanton. “If not, it is 

hard to expect a child to be coping. Based on their own 

circumstances, parents should talk to children when they 

feel they are ready.” 

Children participating 

in our Journey Club 

program learn about MS 

while having fun. 

Where can I get help and support? 

“Children may find it difficult to speak to their parents about 

MS for fear they might get in trouble or that they will hurt 

someone’s feelings,” says Elizabeth Stanton. “For this 

reason, it is important to encourage children to develop a 

strong support network of people who can help them cope 

with difficult situations. This may include aunts/uncles, 

friends, teachers, siblings, doctors and so on. Let children 

know that they can talk to these people if they need to. 

“Interacting with other children who have parents with 

MS could also be very beneficial in helping them to realise 

that they are not alone. Parents are encouraged to make 

contact with other families in a similar situation via our Peer 

Support Program and some of our other family programs.” 

Overall, there is a lot of very practical and emotional 

(psychological) support for children who may be finding the 

situation a little more difficult to cope with. For example, 

your GP can refer you to a psychologist or psychiatrist, 

which can have very effective outcomes. 




MS Australia – ACT/NSW/VIC also provides a host of 

support services for children of parents with MS, including: 

l Community Support Workers who can provide 

support to your family and can help you to answer any 

questions your children may have about the disease, 

medications and so forth. They can also suggest other 

local support services for children in your area. 

l Clinical psychology services and referrals. 

l Education sessions about MS and managing MS 

symptoms. Sessions for families and carers are also 

available. 

l Family programs such as our Kids Day Out, Family 

Camps, Teen Day, Journey Club (all primarily run in 

Victoria) help young children, teens and families living 

Further Reading & Resources: 

l MS Australia – ACT/NSW/VIC has a number of 

information resources that can assist children and 

families living with MS. These include: 

– Has your mum or dad got MS? A booklet for 

young people on facts and feelings about MS. 

– Family Matters: A three-part information series 

for family members and carers of people with MS. 

– Understanding MS: A DVD for people newly 

diagnosed with MS and their families. 

– Creating Resilient Families: A soon-to-bereleased 

DVD for and about families living with MS. 

– A range of information sheets about 

managing MS symptoms. 

For a copy of these resources, call MS Connect 

on 1800 042 138 or visit our website at 


l MS Library: Our MS Library holds a range of 

resources for children growing up with MS. Visit 

www.msaustralia.org.au/libraryopac.asp 

l Young MS: A website especially for kids and teens 

who may have MS or know someone who has MS 

– www.youngms.org.uk 

l How to Talk about MS with Your Children. 

By the MS Society of Canada – http://mssociety. 

ca/en/pdf/talkChildren.pdf 

l Keep your balance: Teens talk about living 

with a parent with MS, by the MS Society 

of Canada – http://mssociety.ca/en/pdf/pub_ 

keepbalance_en.pdf 

l Keep Smyelin: An activity book about MS 

for kids, by the MS Society of Canada – http:// 

mssociety.ca/en/pdf/pub_activity_book_en.pdf 

with MS to connect with others and learn to live with 

MS, while having fun! 

l Information resources, which are available for children 

and families living with MS. See ‘Further Reading’ listed 

in the box below. 

l FlexiRest for people with MS, their families and unpaid 

carers provides options and choice to help meet respite 

needs, particularly where these can’t be met by existing 

community services. For example, FlexiRest has helped 

a teenage boy, who is usually the primary carer for his 

mum, by funding transport and camp fees so he can 

attend a scout camp. FlexiRest is a NSW Government 

funded program. 

l Respite services. Facility-based and flexible in-home 

community respite is available to families living with MS 

across our regions. 

To access any of these services, please contact 

MS Connect on 1800 042 138. The following 

organisations also offer relevant support services to 

families and children: 

l Relationships Australia: www.relationships.com.au, 

1300 364 277 

l Brighter Futures: Provides targeted support to 

vulnerable children and families by connecting them to the 

services they need. Visit www.community.nsw.gov.au or 

www.education.vic.gov.au for more information. 

l The Smith Family Learning for Life Program: 

Supports disadvantaged children and young people – 

www.thesmithfamily.com.au 

l Parentline: Telephone counselling, information and 

referral services for parents and carers of children – 

ACT: www.parentlineact.org.au, (02) 6287 3833 

NSW: www.parentline.org.au, 1300 130 052 

Vic: www.education.vic.gov.au/earlychildhood/parentline, 

132 289 

l Kids Helpline: A free and confidential telephone 

and online counselling service specifically for children, 

teens and young adults – www.kidshelp.com.au, 

1800 551 800 

l COPMI (Children of Parents with a Mental Illness): 

Promoting better mental health outcomes for children of 

parents with a mental health problem or disorder – 

www.compi.net.au 

l Commonwealth Government Youth Programs: 

For more information about the Office for Youth, Youth 

Allowance or Indigenous Youth, visit the ‘youth’ section 

at www.deewr.gov.au 

l Karitane: Providing services for parents, including a 

Careline facilitated by Child and Family Health Nurses – 

www.karitane.com.au/services/careline.php, 1300 227 464 

l House With No Steps: Providing services and support 

to the disability sector – www.hwns.com.au 

l CatholicCare: Providing for the social and emotional 

wellbeing of communities, families and individuals. Visit 

the ‘services’ section of the Catholic Social Services 

Australia website at http://catholicsocialservices.org.au 



Considerations for Young Carers 

In 1997, Erin Hodder was just eight years old when 

her mother was diagnosed with MS. Not long after her 

Mum’s diagnosis, Erin’s parents separated and, as her 

mum’s MS progressed, her role as a carer became 

more involved. Erin is now 22 and cares for her Mum in 

between university and work commitments. 

As one of our MS Ambassadors, Erin often shares 

her story as a young carer and person who has grown 

up with MS. Despite the challenges it presents, Erin 

often says she is grateful for her experience with MS and 

believes that it has made her the person she is today. 

“Caring for someone with MS can be a challenging 

task due to the unpredictable nature of the disease,” 

says Erin. “One morning Mum may wake up and not 

need much help from me but other days (for no reason 

at all) she may not be able to get out of bed. 

“Mum’s MS has been progressive and she is now 

confined to a wheelchair. As her MS has worsened, my 

role has become more intense. In saying this, I am proud 

of how much my Mum still strives to do for herself. She 

never complains; she just needs a bit of help. 

“The hardest part is watching someone you love more 

than anything else in the world become so frustrated 

with the challenges they face. On a practical level, I 

contribute to most of the washing, cooking, cleaning, 

shopping and so on around the house. If Mum is having 

a bad day, I will also assist her with personal care.” 

Don’t ever feel alone. No 

matter how much support 

you need, there is always 

someone who can help 

Erin is just one of the many young people taking 

responsibility for the care of a parent living with MS. 

While young carers are often all too willing to help their 

parent or loved one, it is important they also look after 

themselves. “It is particularly important for young carers 

to be open and honest with their parents, telling them 

what they are capable of and what they are not,” advises 

Elizabeth Stanton, Clinical Psychologist at MS Australia – 

ACT/NSW/VIC. “When things are getting too much, it is 

important to ask for help. 

“All carers need to look after themselves by eating 

well, staying active and maintaining hobbies and doing 

Erin Hodder (left) 

with her mum Jill 

and Tim Bailey 

during a Channel 

10 live weather 

cross on World 

MS Day last year. 

things they enjoy. If they don’t look after themselves, 

they won’t be able to look after their family member 

either.” 

When children are relied on to perform certain 

responsibilities it can, at times, lead to anger and 

hostility – perhaps not towards their parent but at the 

situation in general, warns Stanton. “Looking after 

one’s ‘self’ will go a long way to keeping such feelings 

at bay. It is also important for the young person to 

have someone to confide in – another family member, 

counsellor, teacher, the parent’s community support 

worker, or the like.” 

Based on her experience, Erin agrees: “Don’t ever 

feel alone. There are so many services available for 

carers. As carers we often live by the notion that ‘I don’t 

need help; I’ve done it on my own for years,’ but the 

fact is that no matter how much or how little support 

you may need, there is almost always someone who 

can help you. 

“It is especially important to have a great support 

network of friends and family as well. They are your 

informal support networks and, in many ways, they are 

the best.” n 

Key Contacts for Young Carers: 

l MS Connect: 1800 042 138, 

msconnect@msaustralia.org.au 

l Carers Australia Young Carers Program: 

1800 242 636, www.youngcarers.net.au 

l Centrelink (financial assistance for carers): 

www.centrelink.gov.au 

l Kids Helpline: 1800 551 800, 

www.kidshelp.com.au 

l Lifeline: 131 114, www.lifeline.org.au 



EVENTS For bookings or more information, email educationnsw@msaustralia.org.au or call 1800 042 138 

ACT & NSW 

INFORMATION SESSIONS 

Learn About MS 

Suited to those recently diagnosed, meet others and 

learn about MS and MS Australia services 

15 March, 5.30pm – 8.30pm 

Phillips MS Centre, Chatswood 

14 May, 10am – 1pm 

Studdy MS Centre, Lidcombe, NSW 

Continence Awareness Information Sessions 

Learn about bladder and bowel problems – causes, 

assessment and treatment options 

Date and time TBC (please call MS Connect) 

Various locations in ACT and southern NSW 

Mood & Emotions 

An opportunity to learn about and discuss reasons 

for mood and emotional changes in MS, as well as 

various treatment options 

5 May, 3pm – 5pm (video-linked from Blackburn, Vic) 

Gloria McKerrow House, Deakin, ACT 

Fatigue Information Session 

An overview of MS fatigue and how to manage this 

invisible symptom 

22 June, 10am – 12pm (video-linked from Blackburn, Vic) 


PHYSICAL ACTIVITY GROUPS 

Dru Yoga Classes 

A gentle form of yoga where postures are modified 

so that people with various levels of ability can fully 

participate, either from a sitting position or lying down 

2nd Term, time and dates TBC (call MS Connect) 


Cost: $10 per participant 

MS Australia – ACT/NSW/VIC, along with 

community partners, operate maximising 

strength, flexibility and aquatic exercise groups 

across the ACT, NSW and Victoria. For exact 

locations and times call 1800 042 138 

or go to ‘Health & Wellness’ on our website at 

www.mssociety.org.au/living-with-ms.asp 

Wellness Days 

Explore health promotion activities relating to 

mind–body medicine, stress management and lifestyle 

Greater Western Sydney Harmony Wellness Day 

27 March, St Mary’s Memorial Hall, Sydney 

ALL REGIONS: Albury/Wodonga Wellness Day 

1 May, location TBC 

Cost: $25/person for catering (incl GST) 

ALL REGIONS: Albury/Wodonga Wellbeing Forum 

This program is for health professionals working with 

people with neurological disorders. It will address the 

evidence-based benefits of healthy living, diet, 

vitamin D supplementation, and the latest research 

in exercise and MS 

2 May, location TBC 

Cost: $60 (incl GST) 

To register for Wellness Days, contact: 

ACT/NSW: Sharon Valks on (02) 9646 0728 or email 

sharon.valks@msaustralia.org.au 

Victoria: Jon Adams on (03) 9845 2840 or email 

jon.adams@msaustralia.org.au 

OTHER 

24 Hour Mega Swim 

Raising money for the Go for Gold Scholarships and 

Financial Assistance Program 

12–13 March: Macquarie Uni, North Ryde, NSW 

19–20 March: Leeton Shire Pool, NSW 

4–5 June: AIS Swimming Centre, Canberra 

For more information, visit www.megaswim.com 

TELECONFERENCES 

Available to clients and their family members 

across all regions 

To register, call 1800 042 138 

Learn About MS Teleconference 

Suited to those recently diagnosed, ask questions 

and learn about MS and MS Australia services 

2 June, 7pm – 8.30pm 

Working With MS Teleconference 

(NSW & ACT only) 

Explore your rights and responsibilities at work, 

as well as superannuation, insurance and 

financial matters 

7 June, 7pm – 8.30pm 

Managing Fatigue Teleconference 

Learn how to manage MS-related fatigue 

Part 1: 4 May, 10.30am – 12pm 

Part 2: 18 May, 10.30am – 12pm 

Get Active With MS Teleconference 

Our physiotherapists discuss how fitness and 

exercise can help manage MS symptoms 

23 March, 10.30am – 12pm 

Continence Care in MS Teleconference 

Learn about bladder and bowel problems – causes, 

assessment and treatment options 

29 June, 10.30am – 12pm 

Thinkstock/Photodisc/Jeff Randall 



For bookings or more information, email educationvic@msaustralia.org.au or call 1800 042 138 

EVENTS 

SESSIONS FAMILY & CARER PROGRAMS 

Refer to page 20 for a full list of teleconferences Zooperdooper Family Day Out 

Learn About MS 

For primary and secondary school-aged kids who 

Suited to those recently diagnosed, meet others and have a parent with MS 

learn about MS and MS Australia services 

12 April, 11am 

2 April, 10am – 1pm 

Melbourne Zoo 

The Nerve Centre, Blackburn 

7 May, 10am – 1pm 

The Journey Club 

Brimbank 

A four-week program for families with primary schoolaged 

children, incorporating fun activities to help kids 

Lifemoves Program 

learn more about MS 

VICINFORMATION A six-week structured peer support program provided 30 April – 21 May (weekly), 2pm – 4pm 

by Peers Inspiring Peers 


16 March – 20 April (weekly), 12.30pm – 3pm 


Managing Fatigue 

An overview of MS fatigue and how to manage this 

invisible symptom 

22 March, 10am – 12 noon Brimbank 

26 May, 10.30am – 12.30pm Narre Warren 

Humour and Caring 

Lead by Carers Victoria, this program explores how 

humour can be an effective tool in assisting carers to 

maintain their health and wellbeing (Respite available 

if required) 

24 March, 2pm – 4pm MS Centre, Footscray 

4 April, 2pm – 4pm The Nerve Centre, Blackburn 

Taking Control and Planning Ahead 

Receive advice from the Office of the Public Advocate 

about enduring powers of attorney, guardianship and 

administration 

24 March, 10am – 12pm 

MS Centre, Footscray 

23 May, 10am – 12pm 


Thinking and Memory 

Learn about common MS-related thinking and 

memory changes and how to manage them 

31 March, 10.30am – 1pm 

Narre Warren 

Working With MS 

Explore your rights and responsibilities at work, 

as well as superannuation, insurance and financial 

matters 

9 April 10am – 3pm 

Bendigo 

4 June 10am – 3pm 


Mood and Emotions 

An opportunity to learn about and discuss reasons 

for mood and emotional changes in MS, as well as 

various treatment options 

5 May, 3pm – 5pm 


Get Active with MS 

Our physiotherapists discuss how fitness and 

exercise can help manage MS symptoms 

6 June, 6pm – 8pm Brimbank 

Bookings are essential for all of these 

events. Please call 1800 042 138 or 

email the Education Coordinator in 

your state at the above address 

Other 

24 Hour Mega Swim 

Raising money for the Go for Gold Scholarships and 

Financial Assistance Program 

9–10 April: Aqualinks Nunawading 

For more information, visit www.megaswim.com 

Mega Start to the 

Mega Swim Program 

The momentum of the 24 Hour Mega Swim 

reached its summer peak during February and 

continues into March, with 10 events taking 

place across three states. 

Now in its 11th year, the Fitzroy 

swim continues to go from strength 

to strength, under the dynamic 

leadership of Mega Swim founder 

Carol Cooke. Inaugural events at 

Camden and Wollongong in NSW, 

Leeton in ACT and Adelaide in SA, 

achieved wonderful results thanks to 

the enthusiasm and effort of community 

groups and ‘champions’ of the cause, such 

as former Olympian Sarah Ryan (pictured). 

Champions of two sporting codes – swimmers 

Michael Klim and Linley Frame and Commonwealth 

Games squash athletes, Lisa Camilleri and Melody 

Francis – came together in a 24-hour ‘doubleheader’ 

at the Melbourne Sports and Aquatic 

Centre on 5–6 February. For the first time, Squash 

Vic held 24 Hour Mega Squash, aiming to raise 

$20,000 for MS Australia. This funding, in addition 

to funds raised by the 24 Hour Mega Swim events, 

support our Financial Assistance Program and 

Go for Gold Scholarships, helping people with MS 

to achieve their dreams. 

Keep your eye out for upcoming Mega Swim 

events in this section of Intouch or visit 

www.megaswim.com 



Readathon Revamp in 2011 

Now in its 32nd year, the MS Readathon is the premier 

reading fundraising program in Australia. Last year’s MS 

Readathon saw nearly 20,000 Australian children read to 

raise over $1.5 million for Australians living with MS. What 

an achievement! 

To revive the enthusiasm of past MS Readathon 

participants, The Novel Challenge – a reading and 

fundraising program for adults – was also launched last 

year. Raising over $100,000, the new program attracted 

more than 800 participants. 

The 2011 year brings with it some exciting new 

developments to the MS Readathon program. With a 

new-look interactive website (www.msreadathon.org.au), 

fundraisers have everything they need at their fingertips, 

making reading and raising dollars easier to do. In 

addition, there is plenty to see and do on the site, which 

offers a heap of cool competitions, videos and prizes to 

entertain. Participating schools also have the chance to 

win some fantastic new rewards. 

If you would like information on how to register or 

Seeking Sponsors 

If you are a local business, corporation or individual 

looking for a way to support a not-for-profit organisation, 

look no further. Become a local sponsor to help support 

the 2011 MS Readathon. There are several ways to get 

involved. You can: 

l pledge to support the fundraising efforts of your 

local school by matching their contribution with a taxdeductible 

donation; 

l donate products or services that might encourage 

schools and children to participate in the MS 

Readathon; and/or 

l provide a tax-deductible donation to the MS 

Readathon through a sponsorship agreement or a 

one-off donation that promotes your local business. 

To discuss how you can get involved or share any other 

ideas you might have for being a part of Australia’s 

premier reading and fundraising program, contact your 

MS Readathon State Manager on 1300 677 323, or 

email: 

ACT/NSW: maxine.compton@msaustralia.org.au 

Victoria: kate.wade@msaustralia.org.au 

get your school involved in the 2011 MS Readathon, 

please call 1300 677 323. 

Both the 2011 MS Readathon and The Novel 

Challenge will open in May. Visit www.msreadathon.org.au 

or www.thenovelchallenge.org.au to register! n 

One of our dedicated 

volunteers shares a 

laugh with the 

MS Readathon 

mascot Bosko. 

Ahoy Volunteers! 

The success of the MS Readathon program could 

not be achieved without the help of our fantastic 

volunteers. Why not jump on board, share in the 

success and volunteer for the 2011 program. Volunteer 

positions are available for community representatives, 

administration support and media interns. If you or 

someone you know might be interested in being a 

part of an amazing program that works with children, 

schools and the local community, please contact your 

state office on 1300 677 323. 



Roll of Honour 

We would like to thank the following community members 

who also helped raise funds for MS over the past three 

months: 

l Alena Vydra Christmas tree fundraiser raised $1,140 

l Andrew ‘Zorro’ Notaras’ Shave the Mane charity auction 

at Sydney Fish Markets raised $28,000 

l Barwon Valley (Golden Oldies) Golf Club raised $424 

l Fleur & Simone Van Den Berg and committee raised 

$4,500 through the White Party at the Hunters Hill Club 

l Hillary Britton, Phillipa Hogg & Sarah Macsmith raised 

$5,348.50 at their annual Melbourne Cup lunch in Orange 

l Jan Smith and her family’s Christmas light display raised 

$6,539.70 

l Jason Worldon raised $1,830 through the inaugural 

‘Hoops for MS’ in Sawtell 

l Lions Club of Bright raised $617.75 

l Participants in the 2010 Rebel Sport Run 4 Fun raised 

$10,150. Top fundraiser Justin Veil raised $6,773 

l St Roch’s Primary School raised $2,747.85 


All for a 

Good Cause 

Special thanks to the everyday Aussies who 

are getting together to support the MS cause. 

Why not get involved by creating your own 

fundraising activity? Every little bit counts. 

Choir Sings for MS 

At a recent concert organised by Joy Brink, a 

member of the Frankston U3A choir in Victoria, 

more than 100 people came to enjoy the sounds of 

the choir while making generous donations to MS 

Australia, totalling almost $760. 

The choir created a flyer to promote the event 

and the members worked hard to gather support 

from friends, family, colleagues and extended 

networks. 

“It was a very happy occasion and the sense of 

community was terrific,” says Joy. “I would definitely 

encourage others to give fundraising a go – it is so 

easy once you get started and working with a group 

is more effective as everyone puts in their little bit.” 

Thank you to Joy and all of the members of the 

Frankston U3A Choir for your wonderful support. 

Ashes Legends Help Raise $43K 

Three Ashes Legends events held across Melbourne and 

Sydney in November raised more than $43,000 for MS 

Australia as the events’ chosen charity partner. 

Sir Ian Botham, Allan Border and Ian Healy engaged 

and captivated the audience with their cricketing stories 

and a great night was had by all. 

Get Involved! 

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 members and colleagues, and 

discover how you can make a difference. Get further inspiration 

from our website at www.mssociety.org.au/events.asp or 

contact: 

The ‘Gift’ of Giving 

On 12 November 2010, Sam Macqueen and Kim Caswell 

were married in front of 150 guests on a beautiful spring day 

at Sydney’s Palm Beach. 

Followed by a joyous reception and an unforgettable 

honeymoon to Mexico and South Africa, the couple say the 

most wonderful aspect of the whole event has been the 

pleasure of ‘giving’ more than $12,000 to MS Australia – 

ACT/NSW/VIC in lieu of receiving wedding gifts. 

Sam and Kim set up an online fundraising page and 

asked their guests to give a donation to support people 

living with MS. Their fundraising total is still rising! 

“My sister has suffered from MS for a number of years, 

so we have seen first hand how hard it can be,” says Sam. 

“The uncertainty surrounding its cause, symptoms and a 

cure are mysteries we would really like to help solve. 

“We are fortunate enough to have all the material things 

that we need so we thought that by donating to MS 

Australia, it would be a great way to give back. 

“We are truly blessed to have such a great network of 

family and friends who were more than willing to open their 

wallets for a great cause, while helping us to celebrate our 

marriage.” 

MS Australia would like thank Sam and Kim for their 

generosity and kind spirit and wish them a long and happy 

future together. 

l ACT: Mirimba Kovner, (02) 6234 7030, 

mirimba.kovner@msaustralia.org.au 

l NSW: Kerry Hill, (02) 8299 0134, 

kerry.hill@msaustralia.org.au 

l Victoria: (03) 9845 2726, 

events@msaustralia.org.au 




Volunteers 

in Action 

How our dedicated 

volunteers are helping to 

make a difference for people 


Michelle’s Story 

When I was diagnosed with MS in 

1997, I started going downhill pretty 

quickly. The MS was ruling me at that 

point, so I decided to take some time 

off work to recover. 

A short time later, I was visiting the 

MS Society (as it was called back 

then) and I asked about opportunities 

to volunteer. That was eight years ago 

and I have been an active volunteer 

ever since. 

Initially, I helped out with the MS 

Readathon, general office support and 

data entry. Before long, I was asked to 

help out on the Public Relations Desk, 

which involves meeting and greeting 

people as they arrive to The Nerve 

Centre and directing them to where 

they have to go. That role progressed 

and I have volunteered as the PR Desk 

Team Leader for the last five years. My 

husband and I have often volunteered 

to help out at the fundraising events as 

well, and I have now started putting my 

hand up for other things when I can. 

For me, personally, volunteering 

has been an opportunity to keep my 

mind stimulated and maintain my own 

self-worth. Things really turned around 

for me when I took on these roles, so I 

think volunteering is good for the soul. I 

volunteer for this organisation because 

I have MS, but it’s really the wonderful 

people I get to see and work with every 

week that keeps me coming back. 

All Wrapped Up 

The week leading up to Christmas saw 522 volunteers fill 1,038 shifts across 

20 Borders bookstores in the ACT, NSW and Victoria, as well as Robinsons 

Bookshop in Frankston, Victoria. Overall, these dedicated volunteers gave 

4,000 hours of their own time during this busy period to wrap customers’ gifts in 

exchange for a donation that helped raise funds for people living with MS. 

“I have been wrapping for five years and I love it; it has become part of my 

Christmas,” said one enthusiastic volunteer. “It’s a great way to meet other 

people.” 

Given the amount of people going through these stores in the lead-up to 

Christmas, the organisation was also able to enjoy a high level of visibility and 

promote awareness of MS Australia and our services to the community. 

We would like thank all of the volunteers who gave so generously of their time 

at Christmas. 

Committed to the Cause 

After volunteering at the 2000 

Olympics and for a variety of 

community groups, I became 

interested in volunteering at other 

events. 

I came across the opportunity 

to volunteer for the 2001 MS Walk 

and Fun Run via the Volunteering 

NSW website. I was drawn 

to this because I like the fact 

that MS Australia raises funds 

by encouraging people to be 

active and, in the case of the MS 

Readathon, encourages children to 

read and improve their literacy. 

During that first event, I 

helped out as a timekeeper and 

transported other volunteers to 

and from their positions along the 

course. I also had the opportunity 

to meet a woman in her late 

twenties who has MS. At that 

point I knew very little about the 

disease and was shocked that it 

could affect someone so young. 

A couple of months later the MS 

Volunteer Coordinator asked me if I 

would be interested in becoming a 

Sector Manager for the MS Sydney 

to the Gong Bike Ride. Since then, 

I have been a regular volunteer 

(Sector Manager) at both of these 

events and, during that time I have 

met many people with MS, as well 

as family members and friends of 

people with MS. My empathy for 

them is what keeps me coming 

back each year. The MS Events 

Team is also fantastic, as is the 

opportunity to meet so many other 

wonderful volunteers. 

If you are considering a volunteer 

role, don’t procrastinate. I am 

confident that you will find the 

experience both rewarding and 

memorable. – Noel Patterson 



Volunteer Opportunities 

We are always looking for 

more volunteers to help out in 

many areas. Here are some 

opportunities we’re looking to fill 

right now. 

A Friend Indeed 

My goal to do some volunteer work came to fruition last year when I 

commenced a new job and realised I had some spare time after work. I applied 

to several community organisations and it was MS Australia – ACT/NSW/VIC 

who had vacancies for volunteers. 

I was contacted by the ACT Volunteer and Events Coordinator, who assisted 

with my application and suggested I help with providing social support to Bonnie, 

a woman with MS who lives in supported accommodation within easy walking 

distance from my workplace. The Coordinator came with me on my first visit to 

Bonnie in November last year. 

Bonnie finds it a little hard to move about now and she doesn’t get out too 

often, so the social interaction is really important for her. She is a wonderful 

person with a wicked sense of humour and, after my first few visits, I realised 

how rewarding our friendship had become. 

Each week, we do all those things that friends do together. I will phone and 

see if she is free for a visit, she will call me if she is going shopping, and we 

celebrated her birthday together recently. We share our thoughts and feelings 

and we talk about our lives and the things that are happening in the world around 

us. There are always little things I can do to help Bonnie as well, such as connect 

her computer up, move around a vase of flowers or open her mail. Most recently 

I have volunteered to type up Bonnie’s memoirs, which I am very excited about. 

Overall, I get a warm inner-feeling about helping others – it grounds me and 

gives me a sense of doing something worthwhile. I believe that, as a global 

community, we are all better off if we can help out. – William Scott 

Steve’s Story 

I had never known anyone with MS but when I saw the MS Walk and Fun Run 

advertised some years ago, I got involved as a participant. I really enjoyed this so 

my family and I also started to participate in the Gong Ride. 

When I finished up work in 2006, I was looking for something to do and came 

across volunteer opportunities advertised on the MS Australia – ACT/NSW/VIC 

website. I contacted the organisation and they said they needed someone to 

help clients with their computers at the residential unit at Lidcombe. My working 

background was in IT, so it was the perfect match. They had some permanent 

residents who were doing TAFE courses at the time and I was able to help them 

out two days per week. 

By mid-last year, the students I’d been helping had finished their courses, so I 

started doing a bit of work in the gardens. I do that one day a week now and I’ve 

also been helping a resident with MS at another nursing home with her computer. 

The most rewarding aspect for me has been the wonderful people I get to 

meet and spend time with. I met one gentleman who had served in the Navy 

on HMAS Sydney and that was interesting because my grandfather served 

on the first HMAS Sydney. I was able to share some photos with him that my 

grandfather had given me from the 1900s. 

Overall, I truly believe that, as volunteers, we get more out of the experience 

than what we give. 

ALL STATES: 

The MS Walk and Fun Run will 

take place in Sydney, Melbourne 

and Canberra on 5 June. We 

require volunteers to perform a 

range of duties to help make these 

events a success in each location. 

For more information visit 

www.mswalk.org.au 

CENTRAL REGION: 

l Social support volunteers are 

required throughout ACT and 

central NSW. 

l Volunteers required to assist 

at AIS 24 Hour Mega Swim in 

Canberra: 4–5 June. 

NORTHERN REGION: 

l Social support volunteers 

required in Carlingford, Lakemba, 

Oatlands, Peakhurst and more. 

l Exercise volunteers needed to 

assist with our Friday class at 

Chatswood. 

l Hydrotherapy volunteers needed 

to assist with our Monday 

morning class at Villawood. 

SOUTHERN REGION: 

l MS Community Shops in Kew, 

Daylesford, Fairfield, Geelong 

and Melton require volunteers. 

l Volunteers required to assist in 

the Confident Living Program. 

l Volunteers needed to help on 

the Administration and Public 

Relations Desk at The Nerve 

Centre, Blackburn. 

l Volunteers needed to facilitate 

social and activity programs at 

our accommodation facilities in 

Williamstown, McKinnon and 

Watsonia. 

l Social support volunteers are 

required throughout Victoria. 

l Volunteers needed to assist with 

our Health and Wellness and 

Education Programs. 

If you are interested in these 

or any other volunteer role 

in the ACT, NSW or Victoria, 

please call MS Connect on 

1800 042 138. 




Supporting 

Our Youth 

At 16, Madeline’s journey with MS is 

now a little easier thanks to the 

Peer Support Program. 

On 13 November 2009, my life changed forever. 

When I woke up, I had no feeling in my left arm and 

foot and, while I had been troubled by weak limbs 

previously, the diagnosis was soon confirmed – I was 

told that I have multiple sclerosis. 

I was instantly prescribed the usual immunotherapy 

treatment, which was made easier thanks to the help 

and support of my MS nurse. She not only helped with 

my injections, she also suggested a number of different 

things I could do to manage my MS symptoms day-today. 

She also suggested I access the MS Australia – 

ACT/NSW/VIC Peer Support Program. Being just 15 

at the time, it was hard to accept that I would live with 

this disease for the rest of my life, so I took her advice 

and enrolled in the program. 

Soon after, I was contacted by a trained Peer Support 

Volunteer who had been through a similar experience. 

It was a great opportunity to talk to someone who 

understood exactly what I was going through. We spoke 

over the phone once a week for six weeks, mostly about 

our MS and how it affects our daily lives. 

The whole experience has been very helpful and has 

made me realise that there is support available and there 

are other teenagers living with MS as well. I have also 

learnt not to sit around and worry about having MS; I now 

want to go out and live life to its fullest. 

Overall, I think the Peer Support Program is important 

for families and people diagnosed with MS as it is an 

opportunity to ask questions, find out what others have 

been through and access support in your area. Thanks to 

the program, I have also found a new friend, so I would 

highly recommend it to anyone. n 

Born to Lead 

As one of our long-standing Peer Support 

Volunteers, 52-year-old Daphne recently graduated 

from RMIT’s Leadership Plus Program. She shares 

her story. 

I had just landed my dream job in the banking sector 

when, at 32, I became unsteady on my feet and developed 

optic neuritis. Doctors were fairly quick to confirm these 

symptoms were a result of MS. 

I continued in my role at the bank for about two years 

(working around the challenges of MS) until the company 

downsized and let me go. I was devastated at the time but 

my brother helped me find part-time work as a secretary 

and not long afterwards I met my husband Rob. 

I continued in that role until 2005 when I decided it was 

time to move on. Soon after, I was visiting the MS Centre at 

Footscray when a support worker suggested I try voluntary 

and/or peer support work. I had previously done some 

peer support through the online mc2 community, which I 

really enjoyed; however, I felt there was more I could do. 

I contacted the Peer Support Program staff, enrolled in 

Peer Support training and I now work as a peer support 

and general volunteer at The Nerve Centre in Blackburn. I 

absolutely love it. 

While I have provided peer support over the phone, I 

prefer the face-to-face support work. I have been heavily 

involved in the Blackburn MS Discussion Group and I am 

also getting involved in Peers Inspiring Peers. 

Last year I was nominated to undertake the Leadership 

Plus Program at RMIT University. This is a unique program 

that has been designed for people of all abilities. It provides 

a supportive learning environment and delivers a range 

of accredited leadership competencies and skills, which 

enable participants the opportunity to become involved and 

work in the wider community. 

I graduated from the program in November last 

year and, overall, I met some wonderful people and it 

broadened my mind. What I learnt most was to look 

outside the box. I am now more solution-focused and the 

course made me aware of how important it is to listen 

when dealing with people. 

I would encourage anyone and everyone to get 

involved in peer support and voluntary work if they can. n 

For all enquiries relating to the Peer 

Support Program, please contact 

MS Connect on 1800 042 138. 



Support 

Group Profile 

Peer Support Group Facilitator Mandy 

reveals how the combined powers of peer 

support and physical activity works wonders 

for the newly-formed Frankston Physical 

Activity Peer Support Group. 

When and how was the group established? 

There has been very little peer support available to people 

with MS in the Frankston region of Victoria. So, when 

MS Australia – ACT/NSW/VIC called for expressions of 

interest from the area, they had quite a lot of people 

(myself included) saying they would like to be involved in a 

support group, as well as physical activity. I’ve been a 

Peer Support Volunteer for about eight years, and I’ve also 

been active in facilitating the Women in the East support 

group. It was always known that if and when a group 

was proposed in Frankston, I would help make it happen. 

Thanks to the MS Australia – ACT/NSW/VIC Peer Support 

and Health Promotion teams, we were able to take action 

and launch the group in November last year. 

We currently have around 20 members and anyone in 

the area can join. 


These first few months, we have been trialling a range of 

physical activities, such as Heartmoves (pictured), strength 

maximising, tai chi and yoga. The trainers involved are 

happy to adjust the exercises to suit people of all abilities. 

We have asked the group to feed back what activities they 

would prefer to do on an ongoing basis. 

What are the benefits of combining peer support with 

a physical activity group for people with MS? 

Importantly, there was an interview and training process for 

the physical activity instructors who have been educated 

about the special needs of people with MS. To me, the 

physical activity is vitally important to the wellbeing of 

people with chronic illness but it’s not always something 

people will go out and do on their own. The fact that, with 

our group, there is the added reward of the social support 

makes it more enticing. 

I also think that it can be motivating to share the 

experience with others in a group where people feel safe to 

be themselves and are not afraid to voice their opinions. n 

iThinkstock/Stockphoto 

When do you meet and what does the group do 

together? 

We meet every second Saturday of the month at a 

community centre in Frankston. We enjoy a physical activity 

and then share our experiences with a chat over lunch. 

There are a number of MS support groups operating throughout the ACT, NSW and Victoria. 

To find a support group near you, please contact MS Connect on 1800 042 138. 

LIB1161 Advert ApprovalV2.pdf 1 25/02/09 2:55 PM 




MS Ambassador Profile 

Mother of two, Mary-Ann Germain shares 

her experience as an MS Ambassador. 

Tell us a bit about your MS journey 

I was diagnosed with MS when my second child was just 

five weeks old. When I woke up after delivering her via 

caesarean I couldn’t feel my feet. In the days following, 

I was unsteady on my feet and the pins and needles 

spread to the point where I had impaired sensation from 

the neck down. 

An MRI revealed a large plaque with lots of associated 

inflammation at the very top of my spinal chord. My fears 

were confirmed – I have MS. The baby was weaned on 

the spot and I was treated with high dose steroids. Over 

the next six months I continued to experience frequent MS 

attacks which all ran into one another. I lost the effective use 

of my hands at one point, which was really hard when I had 

a little baby and a toddler running around. I was very lucky 

indeed that my wonderful husband and parents were there 

to help. 

I went back to work part-time when my daughter was six 

months old. I was in the fortunate position of being my own 

boss, which meant I could choose my own hours. While it 

was challenging, it was also very grounding for me because 

the MS had started to make me feel rather de-skilled. Going 

to work put me back in touch with my ‘professional self’. 

On my daughter’s first birthday, I started on one of the 

self-injecting immunotherapy treatments, which I continue 

to use. This certainly seemed to help and in the early days I 

sought professional help to deal with the emotional aspect 

of the diagnosis. However, I think the most significant 

change to help me get on top of the MS was to get 

physically fit again. Thirteen years later, I have two healthy 

teenage children and we lead a fairly normal life, albeit with 

some adjustments. 

Why did you decide to become an MS Ambassador? 

I read about the MS Ambassador Program back in 2005 

when it first launched in NSW. I had been wondering 

how I could help out by bringing some of my skills (as a 

psychiatrist) to bear in a positive way when, professionally, 

I prefer not to treat other families who are living with MS. 

I felt the MS Ambassador Program was a great 

opportunity to do that and get a message of positivity out 

there. I am someone who is able to get up and talk about 

my experience, which includes a message of hope and 

good outcomes. Coming from a medical background is 

also beneficial when explaining to groups what MS actually 

is and so on. 

What are some of the things you have done in your 

role as an MS Ambassador? 

I have spoken to a range of different groups in various 

Name: Mary-Ann Germain 

Age: 47 

Occupation: Child and 

adolescent psychiatrist 

Family: Married with two 

teenage children 

Lives: Sydney, NSW 

Diagnosed with MS: 

13 years ago 

forums, such as community fundraising events, corporate 

and professional conferences, education sessions and even 

at Parliament House. 

What is the most rewarding aspect of being an MS 

Ambassador? 

I derive huge satisfaction out of seeing the kindness in 

people’s hearts. The people I have met along the way have 

been incredibly interesting, intelligent, motivated, wellmeaning 

people. I am humbled by the good intentions of 

those who, especially, put in so much effort to organise 

fundraising events. It does my heart good. 

What is the message you most like to deliver in your 

role as an MS Ambassador? 

It can depend on the group of people I’m talking to but I 

like to leave people with some facts about MS that they 

may not have known otherwise. Through my presentations, 

it’s important that I can help to create acceptance and 

understanding of the illness and the many ways it can 

manifest. I try to leave people with a message of hope 

that says, ‘with your support, we can find better ways of 

intervening with MS’. n 

Would you like an MS Ambassador to speak at 

your next corporate, school or community event? 

Contact the MS Ambassador Program Team via 




HEALTH+WELLNESS 

Research Study 

Falls in Multiple Sclerosis 


MS Australia – ACT/NSW/VIC is inviting participants to take 

part in a study that will explore predictors of falling in people 

with MS. The main aim of the study is to determine whether 

a battery of physiological tests, such as vision, sensation, 

balance, reaction time and strength, can be used to predict 

falls in people with MS. 

Any person with MS who can walk at least 10 metres with 

or without a mobility aid can participate. Participants will be 

invited to perform a number of physical tests at either the 

Studdy MS Centre at Lidcombe or the Phillips MS Centre 

at Chatswood. This will take 40–50 minutes to complete. 

You will be asked to fill in a demographic questionnaire and 

questions relating to your everyday activities before the test. 

This study has been approved by the Human Research Ethics 

Committee of the University of NSW and is being conducted by 

Dr Phu Hoang of MS Australia – ACT/NSW/VIC and Professor 

Stephen Lord from Neuroscience Research Australia. 

To volunteer or for further information, please contact: 

Dr Phu Hoang, PhD 

MS Australia – ACT/NSW/VIC 

(02) 9646 0686 

phu.hoang@msaustralia.org.au 

Thinking & Memory in MS 

Call for Research Participants 

We are seeking volunteers with relapsing-remitting MS, 

aged 20–50, to take part in a research study that will 

explore speed of information processing and memory in 

people with multiple sclerosis (MS). 

Many people with MS complain of slowed thinking and 

memory difficulties. While this can be frustrating, we 

know very little of the way this impacts on everyday tasks. 

Through this study, we aim to gain a better understanding 

of this impact so that we can develop strategies to help 

people with MS manage these symptoms. 

As a participant in this study, you will be asked to complete 

some brief questionnaires and memory and attention tasks. 

This will take 2–3 hours and can be completed at a place 

of your convenience. You will receive a $25 Coles Myer 

voucher in recognition of your involvement. 

To volunteer or for further information, please contact: 

Hasret Niazi 

Neuropsychology Doctorate Student, La Trobe University 

(03) 9479 5328 

h2niazi@students.latrobe.edu.au 

Take Charge 

of Your Health 

The following initiatives could help you save 

money on your medical expenses. 

Health Care Card (HCC) and Commonwealth Seniors 

Health Card (CSHC) 

Eligible cardholders can have prescriptions dispensed 

at the concession rate. For more information, contact 

Centrelink on 132 717 or visit www.centrelink.gov.au 

PBS Safety Net 

Once your family has spent a certain amount on PBS 

(government-subsidised) prescriptions, you may be eligible 

for a lower co-payment rate for the remainder of the 

calendar year. For more details, speak to your pharmacist. 

Brand price premiums and generic medications 

Unless specified by your doctor, ask your pharmacist if 

there is a least expensive brand of medication. When PBS 

prescriptions are dispensed, Medicare only subsidise the 

least expensive brand. 

Medicare Safety Net 

Once your family has spent a certain amount on Medicaresubsidised 

out-of-hospital services, you are entitled to 

additional benefits for the remainder of the year. Contact 

Medicare on 132 150 or visit www.mbsonline.gov.au 

Medicare bulk billing for tests 

If your doctor refers you for a medical test outside a public 

hospital you may have to pay the fees upfront. Ask your GP 

for a referral to imaging centres and pathology services that 

offer bulk billing for Medicare cardholders, if applicable. 

GP Chronic Disease Management, Chronic Disease 

Dental Scheme and Better Access to Mental Health 

If you are eligible for any or all of these programs, you 

will be able to access additional Medicare subsidies on 

certain health services, such as allied health consultations, 

dental services and psychology consultations. For more 

information, speak to your GP. 

Medical Expenses Tax Offset 

If your family’s medical expenses exceed a certain amount, 

you may be able to claim a tax offset on your personal tax 

return. Contact the ATO on 132 865 or speak to your 

tax agent. 




Get Active 

Stay active with programs and advice 

brought to you by our Health Promotion Team. 

First Wellness Day to Involve all Regions 

On 1 May, MS Australia – ACT/NSW/VIC will hold its first 

ever Wellness Day that will bring together people living with 

MS, health professionals and staff from across our regions. 

The event will be held in Albury/Wodonga on the NSW 

and Victorian border, and will be followed the next day with 

a Wellbeing Forum for health professionals working in that 

area. The client event will involve the usual ‘come and try’ 

physical activities and experts Dr Craig Hassed and Sandy 

Davidson will provide practical insights to the ‘ESSENCE 

of Managing MS’ and ‘Nutrition to Nourish the Nervous 

System’, respectively. 

Beyond the Wellness Day, our Health Promotion Team 

will work closely with local tai chi, Heartmoves for MS, yoga 

and community strength training programs to establish 

new physical activity programs in the area. 

Dr Hassed and Dr Lisa Dell’Oro, MS Australia – ACT/ 

NSW/VIC Exercise Physiologist, will deliver the keynote 

presentations at the health professionals’ Wellbeing Forum 

– a Professional Development Program for Neurological 

Disorders. They will address the evidence-based benefits 

of healthy living, diet, the importance of vitamin D, and the 

latest research in exercise and MS. 

This program will help equip local health and fitness 

professionals to support people with MS and other 

chronic and neurological conditions in the region to 

live well, long into the future. Networking and local 

knowledge shared on the day will strengthen the 

services of local health professionals as well as support 

us in the development of ongoing programs for people 


For more information and to register for these events, see 

pages 20–21. 

Expanding Heartmoves for MS 

Building upon the enormous success of our 

partnership with the Heart Foundation, and the 

development of the Heartmoves for MS physical 

activity program in the ACT and NSW, we are 

delighted to advise that this program has now 

commenced in Victoria. Our staff have been trained 

to enable future partnering with, and educating of, 

new Heartmoves instructors across Victoria, which 

will support the expansion of Heartmoves for MS 

programs across the state. 

The newly-formed Frankston Physical Activity 

Peer Support Group trialled one of the first 

Heartmoves exercise programs in the state. 

In 2011, MS Australia – ACT/NSW/VIC will work 

closely with the Heart Foundation Heartmoves 

team to train all State Heartmoves Coordinators 

in the Heartmoves for MS program. Together, our 

organisations will develop a strategy to communicate 

with all MS Societies in Australia to promote the 

Heartmoves for MS program and increase the 

number of people with MS exercising in Heartmoves 

programs across the nation. 

ll run, extraordinary guest speakers, 

sessions to try, with caring 

ssionals and a wonderful lunch.” 

he help of health professionals, 

ing to try and improve my life 

ourage more people I know 

to attend these workshops. 

ou!” 

Upcoming Wellness 

Days for 2011 

Central Region: 

l Albury/Wodonga, 1 May 

l Canberra, date TBC 

Northern Region: 

Greater Western Sydney, 

27 March 

Southern Region: 

Outer east metro Melbourne, 

date TBC 

Calling Expressions of Interest – 

New Physical Activity Groups 

MS Australia – ACT/NSW/VIC is now calling on 

expressions of interest from people interested in joining 

physical activity groups in the following locations: 

Central Region: Canberra, Albury/Wodonga 

Northern Region: Greater Western Sydney, 

Baulkham Hills, Oatley 

Southern Region: Brimbank, Mildura, Traralgon 

To express your interest or to find an existing physical 

activity group near you, call MS Connect on 1800 042 138. 





Words of Wisdom: Managing Stress 

While stress can be unavoidable at times, its impact on the body has been 

widely researched and documented. Therefore, minimising stress through 

activities such as meditation can go a long way to enhancing your overall 

wellbeing. 

A regular meditation practice can have many beneficial effects. For 

example, it can: 

l improve one’s overall health 

l increase concentration and focus 

l assist people to find balance in their lives 

l improve quality of sleep 

l increase energy. 

For more information about the benefits of meditation and how to incorporate 

it into your daily life, the following related resources are available for loan from 

the MS Library: 

l Hurry Up and Meditate: Your starter kit for inner peace and better health, 

by David Michie. Sydney: Allen & Unwin, 2008 

l Know thyself: the stress release programme, by Dr Craig Hassed. 

Melbourne: Michelle Anderson Publishing, 2002 

l Stress Release Program (CD), by Dr Craig Hassed. Melbourne, 2006 

l The Essence of Health: The Seven Pillars of Wellbeing, by Dr Craig 

Hassed. Sydney: Ebury Press, 2008 

Contact the MS Library on (03) 9845 2809 or email library@msaustralia.org.au 

MS Australia – ACT/NSW/VIC, along with exercise therapists in the 

community, currently operate more than 75 physical activity groups 

across the ACT, NSW and Victoria. These include Heartmoves for 

MS, strength maximising, flexibility and aquatic exercise groups. Visit 

www.mssociety.org.au/living-with-ms.asp or call 1800 042 138 to find 

a group near you.


Food for 

Thought 

Maintaining a healthy diet 

is an important aspect of 

keeping well, but what does 

it mean for people with MS? 

We take a look at the current 

diet therapies associated 

with the management of the 

disease. 

We are often told ‘you are what 

you eat’ and that a healthy diet will 

enable our bodies to work to their full 

potential. People with MS, especially, 

can benefit from eating nutritionallybalanced 

meals. A good diet can 

help to minimise fatigue, reduce the 

impact of symptoms and promote 

an overall sense of wellbeing. This 

much is true, but what of the diet 

therapies that have emerged over 

the years claiming to reduce the 

rate and impact of relapses in 

people with MS? This is an area 

of enormous interest and concern 

for people living with MS. There is 

currently a great deal of promising 

research into the disease-modifying 

impact of certain diets and nutritional 

practices. Needless to say, however, 

all national strategies and guidelines 

support attention to a healthy diet in 

supporting people living with chronic 

disease, through improvements in 

quality of life outcomes. 

Below are some of the current 

diet therapies associated with MS. 

However, it is crucial for individuals 

to seek professional advice from a 

nutritionist or GP before eliminating 

certain foods from their diet. And 

remember, a nutritionally-balanced 

diet is just one aspect of a healthy 

lifestyle. Keeping active and taking 

part in stress-reducing activities also 

play an important role in keeping well. 

The Swank Diet 

The Swank diet is perhaps the best known diet associated with MS. Named after 

Dr Roy Swank, it is suggested that the diet is effective in reducing the frequency 

and severity of relapses (exacerbations) in people with MS. 

The Swank Diet recommends that polyunsaturated fatty acids are increased 

while saturated fats are decreased to 15 grams or less per day. Fish is one 

of the main foods in the regime, as is vegetable oil and cod-liver oil. The 

Swank MS Foundation recommends the diet be incorporated into a lifestyle 

that includes regular physical activity, adequate rest, reduced stress and an 

optimistic attitude to life. 

For more information: 

l The Swank MS Foundation website: www.swankmsdiet.org 

l The Multiple Sclerosis Diet Book, by R Swank & B Brewer. New York: 

Bantam Doubleday Dell Publishing Group Inc, 1987 

The Jelinek Diet 

Professor George Jelinek, a professor in emergency medicine and a person with 

MS, devotes his time to helping others understand the disease. The focus of his 

MS management regime is around diet. Professor Jelinek suggests that dietary 

fats play a major part in the development and progression of MS. He advocates 

that a diet very low in saturated fat (with no dairy and little or no meat) has shown 

significant reductions in relapse rates and disease progression. 

Much of his evidence is based on the work of Roy Swank and others 

suggesting the benefits of a low-fat diet for people with MS. The health benefits 

of sunlight, vitamin D supplementation and lifestyle changes that focus on the 

mind–body connection are also promoted as part of Jelinek’s program. 


l Overcoming MS website: www.overcomingmultiplesclerosis.org 

l Overcoming Multiple Sclerosis: An evidence-based guide to recovery, 

by G Jelinek. Sydney: Allen & Unwin, 2010 

l Doidge M. Evaluation of a nutrition education programme for people 

with multiple sclerosis. Journal of Human Nutrition and Dietetics 1993; 

6(2):131-147 

Thinkstock/Comstock Images/iStockphoto/Digital Vision/ Noel Hendrickson 



A Good Starting Point 

The Heart Foundation and the 

National Health and Medical 

Research Council (NHMRC)’s 

Dietary Guidelines for Australians 

are a useful reference point if you 

are unsure where to start. They 

highlight a number of key principles 

for maintaining a healthy and 

well-balanced diet, such as: 

l Enjoy a wide variety of nutritious 

foods. 

l Eat vegetables, wholegrains, 

fruit, nuts and seeds daily. 

l Eat plenty of cereals (bread, rice, 

pasta and noodles), preferably 

wholegrain. 

l Incorporate lean meat, fish, 

poultry and/or alternatives. 

l Consume reduced-fat milks, 

yoghurts, cheese and/or 

alternatives. 

l Choose healthier fats and 

oils, limiting saturated fat and 

moderate total fat intake. 

l Choose foods low in salt. 

l Consume only moderate 

amounts of sugar and foods 

containing sugar. 

l Limit alcohol intake. 

l Drink mainly water and keep 

hydrated. 

l The national guidelines also 

suggest that keeping physically 

active and eating according 

to your energy levels is part of 

healthy living. 


l Complementary and 

alternative medicine and 

multiple sclerosis, by A 

Bowling. New York: Demos, 

2007. 

l Heart Foundation website: 

www.heartfoundation.org.au 

l MS Essentials 11: Diet and 

nutrition, by the UK Multiple 

Sclerosis Society (2008) – 

www.mssociety.org.uk 

l National Health and Medical 

Research Council website: 

www.nhmrc.gov.au 

l Nutrition Australia website: 

www.nutritionaustralia.org 

The Ornish Diet 

Dr Dean Ornish is known for his lifestyle-driven 

approach to the control of coronary artery disease. 

Ornish showed that heart disease could not only be 

slowed, but actually reversed with a low-fat, 

plant-based diet and healthy lifestyle regime 

featuring yoga, meditation, smoking cessation 

and regular exercise. 

Dr Ornish’s main argument is that eating a 

high-fibre, low-fat vegetarian diet will not only 

help you get and stay healthy, it will also help you 

lose weight. 


The Mediterranean Diet 

Inspired by the dietary patterns of the poor coastal regions of southern Italy, 

Crete and Greece in the 1960s, medical researchers believe the Mediterranean 

Diet reduces the risk of heart disease, lowers blood pressure and decreases 

levels of low-density lipoprotein (LDL), or ‘bad’ cholesterol. 

The Mediterranean Diet has been associated with a reduced risk of overall 

(and cardiovascular) mortality, and a reduced incidence of cancer, Parkinson’s 

and Alzheimer’s diseases. 

Olive oil is particularly characteristic in the diet. It contains a very high level 

of monounsaturated fats – especially oleic acid – which studies suggest may 

be linked to a reduction in coronary heart disease risk. Evidence also 

suggests that the antioxidants in olive oil improve cholesterol regulation and 

LDL cholesterol reduction, and that it has other anti-inflammatory and antihypertensive 

effects. 

The Mediterranean Diet emphasises the need for regular exercise and 

eating primarily plant-based foods. 


l Eat, Drink and Be Healthy, by W Willett. New York: Free Press, 2005 


l Eat More, Weigh Less, by C Ornish. New York: Quill 

(Harper and Collins), 2001 

l The Spectrum, by D Ornish. New York: Ballantine Books, 2008 

Action for Research into Multiple Sclerosis (ARMS) Diet 

The ARMS Diet was originally formed by a group of people with MS in the UK (it 

no longer exists under this name). ARMS turned to Professor Michael Crawford, 

a professor of nutrition at Nottingham University, for therapy options. Professor 

Crawford devised a diet for the group which was high in essential fatty acids 

and provided a good intake of vitamins and minerals. His diet was based on 

a number of trials that had indicated a diet high in polyunsaturated fatty acids 

helped reduce the frequency, severity and duration of MS relapses. 

The overriding principle for the ARMS Diet is not so much about the 

amount of saturated fat in the diet, but more the ratio of polyunsaturated fat 

to saturated fat. 


l Managing multiple sclerosis naturally: A self-help guide to living with MS, 

by J Graham. Vermont: Healing Arts Press, 2010 




Spotlight On: 

Exercise Physiologists & Therapists 

The benefits of exercise have been widely reported for people with MS but knowing what 

type of exercise is best, and where to access suitable programs, can be a challenge. Our 

exercise physiologists and exercise therapists can help you connect the dots. 

What is exercise physiology and exercise 

therapy? How are they relevant to people 

with MS? 

Exercise physiologists (EPs) are university-qualified allied 

health professionals who specialise in the delivery of 

exercise, lifestyle and behavioural modification programs 

for the prevention and management of chronic diseases 

and injuries. MS Australia – ACT/NSW/VIC has qualified 

EPs and exercise therapists (qualified personal trainers) 

who provide an holistic approach to the often complex 

management of an individual’s MS symptoms. As such, 

these therapists will work closely with physiotherapists and 

other allied health professionals to: 

l educate clients, their family members/carers and 

relevant staff about the benefits of physical activity 

l prescribe individualised exercise programs 

l inform/guide clients through the strategies required to 

manage an ongoing exercise program 

l refer clients to a community EP (e.g. in regional areas) and 

assist with access to appropriate exercise groups 

l follow-up and review as required 

l develop and provide training to fitness professionals on 

the key aspects of working with people with MS. 

Our EPs and ETs also work with the Health Promotion 

Team to expand the number of exercise opportunities 

available for people with MS, as well as the Peer Support 

Program Team to help launch combined peer support/ 

physical activity groups. 

How can exercise physiologists and 

therapists support me? 

In consultation with a client’s healthcare team, an EP will 

assess a client’s ability and needs to determine the best 

type of exercise program suitable for them. 

For our clients in NSW, this is generally done by a 

physiotherapist who will assign clients to MS-specific 

training programs that are actually run by our exercise 

therapists (ETs). 

Importantly, people can expect progress to be made 

towards achieving their individual health and fitness goals. 

To support MS Australia’s commitment towards 

symptom self-management, the EP and/or ET will guide 

the client on how to progress their exercise program as 

appropriate. 

For example, a client may already be attending a gym 

but requires some specialised guidance or review of their 

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exercise program. This usually includes an education 

session for gym staff to extend their knowledge of MS and 

help in tailoring specific exercises around MS symptoms 

(e.g. seated exercise for people with mobility problems or 

reducing the number of repetitions to lessen the likelihood 

of muscle and nerve fatigue). 

There is a tendency for many people to not complete 

their gym-based exercise programs because they feel their 

specific needs around MS are not catered for. However, 

an important role of our EPs, ETs and physiotherapists is 

to equip fitness professionals with the necessary skills and 

knowledge to ensure people with MS can continue with 

their gym activities. 

What types of exercise programs are 

available? 

MS Australia – ACT/NSW/VIC, along with fitness 

professionals in the community, currently operate more 

than 75 physical activity groups across our regions. These 

include Heartmoves for MS, maximising strength, flexibility 

and aquatic exercise groups that are specifically tailored for 

people with MS. 

Our EPs and physiotherapists can assist you with 

assessing your level of ability and can suggest a suitable 

program near you. 

For many reasons we would recommend either a group 

or individual program outside the home but sometimes a 

home exercise program is deemed appropriate. A suitable 

program can be devised with the client’s needs and goals 

at the forefront, always considering realistic timeframes. 

information about this scheme, visit www.health.gov.au/ 

mbsprimarycareitems, call 132 001 or talk to your GP. n 

*Special thanks to Lisa Dell’Oro, Exercise Physiologist, and 

Tracy Martinuz, Exercise Therapist, at MS Australia – ACT/ 

NSW/VIC for their assistance with this article. 

Community Teams 

Exercise physiology and exercise therapy are 

just two of the health services provided by MS 

Australia – ACT/NSW/VIC. Exercise physiologists 

and therapists work alongside the following health 

professionals in our community teams: 

l Community 

support workers 

l Clinical psychologists 

l MS nurses 

l Neuropsychologists 

l Occupational 

therapists 

l Physiotherapists 

l Social workers 

If you would like more information on any of 

these services, please contact MS Connect on 

1800 042 138. 

How do I access these services? 

People with MS can access the support of our EPs, 

ETs and physiotherapists by contacting MS Connect on 

1800 042 138 or can be referred by their GP or other 

allied health professionals within our community teams. 

Assessments can take place in one of our MS centres, a 

local gym, at the client’s home, and via the phone or email. 

Having also developed strong relationships with 

community-based EPs, ETs, physiotherapists, fitness 

instructors, gyms, aquatic centres and other relevant 

facilities throughout our regions, MS Australia – ACT/NSW/VIC 

ensures that we cater for our large client base. To provide 

continuity and support for clients it is necessary for them 

to have a local provider they can link in with as required. 

This is especially important for rural/regional clients where 

access to an MS EP is limited. Clients are often referred to 

suitable exercise groups run externally but supported by 

MS Australia. 

To view the current locations of our existing groups, 

visit www.mssociety.org.au/living-with-ms.asp or call 


Notably, under the Medicare rebate scheme, clients may 

be eligible for five free visits to an EP or physiotherapist 

as one of a range of allied health services covered by the 

GP Chronic Disease Management program. For more 



LIFESTYLE 

Play it Safe: 

Fire Prevention 

at Home 

As the weather cools down, we will soon 

start digging for the electric blankets and 

dusting off our heaters to brace for winter. 

It is also a good time to remind ourselves 

about the potential risk of house fires, as 

well as how to prevent them and plan for 

an emergency. 

Robyn Pope is all too familiar with the disastrous effects of 

a house fire. With her own home catching alight last year, 

it was only the quick thinking and bravery of her neighbour 

that saved her life. 

Robyn is 43 and has been living with MS for 13 years. 

She lives alone in Sydney’s south west and has very limited 

Quick Facts 

l Each year, Fire and Rescue NSW 

responds to approximately 190,000 

calls across NSW. 

l Last year, 4,348 of these were 

preventable fires in residential 

properties. 

l Data indicates that residential fires 

increase during the cooler months from 

May to August. 

l In Australia, research has found the 

following to be the most common 

causes of fire: 

cooking 47% 

faulty electrical appliance/ 

fitting 13% 

open fire 5% 

bush fire 5% 

candles/oil burners 4% 

flammable liquid/gas/gas leak 4% 

cigarettes 3% 

mobility and other permanent and severe challenges due 

to her progressive disease. Wishing to remain independent 

and live at home, Robyn uses an electric wheelchair and 

has home care services visit four times per day, as well 

as MS community support workers and a physiotherapist 

once a week. 

Last year, though, life took an unexpected turn for 

Robyn. “Home care usually come and put me to bed at 

8.15pm but on 16 September I wanted to stay up and 

watch The Footy Show,” recalls Robyn. “My neighbour 

came over to help hoist me into bed. As she was saying 

goodbye and walked out of the bedroom, she just 

happened to turn around to see a big red glow coming 

from under the door of the second bedroom. She opened 

the door to find the house was on fire. She raced back in 

and grabbed the hoist to help me out of bed but I realised 

that, because the bedroom door had been opened, the fire 

would spread quickly and it would take too long for us to 

get the hoist operating and get out safely. 

“While my neighbour called the fire brigade and her 

partner for help, I dragged myself out of bed and into my 

wheelchair. It was hard and very painful but I just had to 

do it. Everything seemed like it was taking forever. My 

neighbour’s partner jumped the fence and grabbed the 

hose to start tackling the fire. The glass windows blew out 

and he was quite badly cut from that explosion. 

“As my friend was trying to help me get out of the 

bedroom, the smoke was so thick we could barely see 

two inches in front of us. I accidentally pinned her against 

the cupboard at one point because we just couldn’t see. 

I managed to turn the chair around to move out of the 

bedroom and head to the back door. By the time we 

got out of the room, though, we couldn’t get to the back 

door as the fire and smoke has spread. The only other 

option was the front door but I have a small patio and 

Thinkstock/Digital Vision/ Michael Blann 



LIFESTYLE 

steps out the front, so I started panicking. I didn’t think the 

wheelchair would make it out that way either. 

“Urging me to trust her, my neighbour put a cardigan 

over both our heads, and I just shut my eyes and hit the 

controller. I dived out the front door and landed on the 

front porch with my wheels just touching the top step. 

Thankfully, that’s when the fire brigade turned up.” 

The impact 

Both Robyn and her neighbour were treated for severe 

smoke inhalation, and Robyn had to stay in a care facility 

for six weeks while her home was being repaired. Robyn 

lost quite a lot of personal items but fortunately the cost of 

repairs was covered by the Department of Housing. 

While she was happy to return home, Robyn says she 

still feels anxious going to bed at night. “I have had trouble 

settling back in. I feel quite anxious now and I can’t stop 

thinking that, if I had of gone to bed when the care service 

came at 8.15pm, I could quite possibly be dead now. 

“Again, if it wasn’t for my neighbour, I definitely would 

not be here, and her partner really saved the house from 

completely burning to the ground.” 

Robyn later found out that the fire was caused by an 

electrical fault in one of the power points in the second 

bedroom. While she did have smoke detectors in the 

common areas of the house, they didn’t go off until her 

neighbour opened the door to the bedroom where the 

fire had started. 

The fire brigade have now put smoke detectors in every 

room and the wiring throughout the whole house has been 

checked. 

Prevention and planning 

“As a firefighter, I have seen how quickly a fire can spread,” 

says Melanie Rebane, Community Safety Coordinator 

(Ageing and Disabilities) at Fire and Rescue NSW. “Unless 

you’ve experienced a house fire, most people just don’t

LIFESTYLE 

realise that a small fire can quickly escalate to completely 

engulf a room in less than three minutes.” 

Rebane is responsible for developing and managing 

preventative projects and programs across NSW to assist 

‘at risk’ communities to prepare for and prevent fires. 

“People with disabilities or those who may simply have 

minor challenges with mobility or cognition (like many 

people with MS) are often less capable of escaping from 

a fire, particularly if they’re living alone,” she says. “My 

role involves changing the fire safety perceptions and 

behaviours of people. 

“Some of the key fire prevention and safety tips we 

provide to the community include: 

l When you are asleep, you will not smell smoke and it 

will in fact put you into a deeper sleep. A smoke alarm 

detects smoke well before you would, alerting you to the 

danger of a fire and giving you precious time to escape. 

l Install smoke alarms in your home (one outside your 

bedroom in the hallway and one in your bedroom, at 

least). Test them monthly and replace the battery yearly. 

If you are hard of hearing, there are specialised smoke 

alarms available with a strobe light and vibrating pad, 

which is placed beneath your pillow. 

l Never leave cooking or any other open flame (including 

candles or oil burners) unattended. 

l Never smoke in bed and take extra care if consuming 

alcohol while smoking. 

l In winter, take extra care when using heaters, electric 

blankets or open fires. 

l Don’t overload power points and always switch off 

appliances when not in use. 

“I would encourage anyone with a disability to prepare a 

home escape plan in the case of an emergency,” stresses 

Rebane. “Emergencies usually happen when you least 

expect it. By planning ahead, you will have a better chance 

of protecting yourself, your pets, your possessions and 

your property. 

“Developing, and regularly practising, a written home 

escape plan that takes into consideration your own 

requirements and proper arrangements for assistance if 

required, will ensure you and your support network will 

know exactly what to do in an emergency. For example: 

l Smoke from a fire limits your visibility and can make 

you confused. Know two ways out of every room in the 

house and make sure there is no furniture restricting 

your safe passage outside. 

l Ensure any mobility aids you may need are in good 

working order and are easily accessible. 

l Where possible, sleep in a bedroom close to an exit 

doorway. 

l Make sure keys to all locked doors are readily 

accessible. 

l Keep your mobile phone close by at night. If you have 

difficulty using the telephone, consider using a personal 

alarm. For more information about these, contact the 

Independent Living Centre in your state. Visit 

www.ilcaustralia.org for details. 

“It is important for family members and carers of people 

with disabilities to get together to discuss and practise 

the home escape plan of a person with a disability,” adds 

Rebane. “Planning how to contact ‘000’ (triple zero), family 

members, neighbours or carers in the case of emergency, 

and planning your escape path and predetermined point of 

safety are vital to surviving a house fire.” n 

For more information and resources 

All fire services have informative websites with handy fire safety tips and fact sheets on the 

services they provide to the community. For example, Fire and Rescue NSW has a program 

for people with disabilities and seniors called the Smoke Alarm and Battery Replacement 

program. Visit your state’s fire service’s website at: 

l ACT: www.firebrigade.act.gov.au 

l NSW: www.fire.nsw.gov.au or www.rfs.nsw.gov.au 

l Victoria: www.mfb.vic.gov.au or www.cfa.vic.gov.au 

For information and a template on how to develop your own home escape plan, visit the 

Fire & Rescue NSW website at www.fire.nsw.gov.au. The Australian Red Cross also have 

emergency preparedness resources for people with disabilities. Visit www.redcross.org.au 

Thinkstock/Digital Vision/Michael Blann/iStockphoto 



WHAT’S NEW: MS-RELATED RESOURCES 

Check out the latest resources, sourced by the MS Library. 

Childhood MS – 

a guide for parents 

Childhood MS: A Guide for Parents 

By the UK MS Society 

Website: www.mssociety.org.uk/support_and_services/free_ 

publications/childhood_ms.html 

In keeping with the theme of this edition of Intouch, 

Childhood MS: A guide for parents tackles some of the 

issues and challenges that young children with MS may 

face. The topics covered include the possible causes of 

MS, diagnosis, symptoms, treatment and management, 

cognitive issues, and MS and the family. A section titled 

‘school, college and university’ contains useful information 

related to coping with fatigue, bullying and taking 

medication at school. 

The following booklets published by the UK MS Society 

may also be of interest: 

• MS in your life: A guide for young carers 

www.mssociety.org.uk/support_and_services/free_ 

publications/young_carers.html 

• Our dad makes the best boats 


publications/dad_boats.html 

• Our mum makes the best cakes 


publications/our_mum_cakes.html 

Carer Relaxation 

(audio CD) 

By the Australian 

Government Department of 

Health and Ageing 

Featuring three short 

programs, the Carer 

Relaxation CD is a useful 

resource that allows 

carers to escape from the 

day-to-day pressures of 

being a caregiver. The first 

program on the CD runs 

for five minutes, talking 

listeners through some 

gentle stretching exercises. 

The recharge program 

– a 10-minute segment 

– encourages ‘time out’ 

and helps carers to feel 

refreshed and ready to face 

the day. 

For those who need to 

completely unwind, the 

CD provides a 20-minute 

relaxation program that 

gently guides listeners 

through a number of 

tension-releasing activities. 

The CD concludes in an 

arrangement of soothing 

music that carers can listen 

to whenever they need to 

tune out. 

The Carer Relaxation CD 

is available free to carers via 

the Commonwealth Respite 

and Carelink Centres 

(contact 1800 052 222 to 

locate your nearest centre). 

Keeping the blues away: 

The ten-step guide to 

reducing the relapse of 

depression 

By C Howell, 

Radcliffe Publishing 

Keeping the blues away 

is a 10-step guide that 

can assist in the recovery 

of depression and in 

helping people to stay well. 

Covering areas such as 

assessment, goal setting, 

healthy lifestyles, coping 

skills and the benefits of 

activity, this book takes a 

holistic approach to the 

treatment of depression. 

Each chapter in the 

book includes strategies 

and activities for achieving 

the steps and developing 

a plan to combat relapses, 

as well as a list of useful 

resources. Relaxation 

music can also be 

downloaded from an 

accompanying website. 

To borrow books or for assistance in accessing online resources, please contact 

the MS Library on (03) 9845 2809 or library@msaustralia.org.au

Practical advice and personal stories from children ... - MS Australia

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