Growing up with MS Practical advice and personal stories

The Official Magazine of MS Australia – ACT/NSW/VIC
www.msaustralia.org.au/actnswvic
Autumn 2011
ISSN 1833-8941
Print Post Approved:
PP 255003/08108
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
New column:
MS Advisory Council
25 May – 5 June
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: [email protected]
Design: Byssus, (02) 9482 5116,
www.byssus.com.au
Photographs: The stock images appearing in
Intouch are sourced from Thinkstock.com
Printing: Webstar Print
MS Australia – ACT/NSW/VIC
ACT
Gloria McKerrow House
117 Denison Street
Deakin ACT 2600
Tel: (02) 6234 7000
Fax: (02) 6234 7099
32
NSW
Studdy MS Centre
80 Betty Cuthbert Dr
Lidcombe NSW 2141
Tel: (02) 9646 0600
Fax: (02) 9643 1486
Victoria
The Nerve Centre
54 Railway Road
Blackburn VIC 3130
Tel: (03) 9845 2700
Fax: (03) 9845 2777
MS ConnectTM (information and services):
1800 042 138 (free call)
Regional offices:
Visit www.msaustralia.org.au/actnswvic
and click on ‘Contact Us’
Privacy Policy: Visit www.msaustralia.org.au/
actnswvic for our full policy document
ISSN: 1833-8941
Disclaimer: Information and articles contained
in Intouch are intended to provide useful and
accurate information of a general nature for the
reader but are not intended to be a substitute
for legal or medical advice. Multiple Sclerosis
Limited is not recommending medical or legal
advice and readers must seek their own medical
or legal advice as may be appropriate.
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.
© Multiple Sclerosis Limited 2011
2
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www.msaustralia.org.au/actnswvic
Contents
16
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
34
CEO’s Message
•
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
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.
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
www.msaustralia.org.au/actnswvic
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
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3
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
[email protected]
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
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intouch
autumn 2011
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Your Say
Thank you for sharing your stories, tips and feedback.
We’d love to hear more!
Write to us at [email protected] or post your letter to ‘Intouch’, PO Box 210, Lidcombe NSW 1825
Freedom to ride
LIFESTYLE
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
The Official Magazine of MS Australia – ACT/NSW/VIC
New-look
Magazine!
ISSN 1833-8941
Print Post Approved:
PP 255003/08108
Beat
the
Heat
summer 2010
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u/actnswvic
summer 2010
A conscious consumer
intouch
37
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’.
Each reader to have their letter published has won an
Organic tea and chocolate
indulgence pack
Summer 2010
autumn 2011
www.msaustralia.org.au/actnswvic
How to stay cool and
safe this summer
2009 Go for Gold
intouch
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Autumn 2010
ISSN 1833-8941
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36
Great
intouch
5
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.
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autumn 2011
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
www.msaustralia.org.au/actnswvic
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
www.msaustralia.org.au/actnswvic
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 [email protected]
autumn 2011
intouch
7
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
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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
www.msaustralia.org.au/actnswvic
Education and
Awareness Activities
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.
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
www.msaustralia.org.au/actnswvic
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
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9
Q&A
Your MS-related, health and lifestyle
questions answered.
If you have questions about MS-related concerns, please contact MS ConnectTM on 1800 042 138.
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
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* 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
www.msaustralia.org.au/actnswvic
Thinkstock/iStockphoto
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
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
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
Sharing the joy: David with his wife
Ros (left) and daughter Jo during the
celebrations at his 1,000th gym visit.
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
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 [email protected]
www.msaustralia.org.au/actnswvic
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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.
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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.”
www.msaustralia.org.au/actnswvic
iStockphoto/Thinkstock/Pixland
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.”
GROWING UP WITH MS
“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
www.msaustralia.org.au/actnswvic
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
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GROWING UP WITH MS
Support for Siblings
Case Study:
Angela’s Story
Age: 23
Occupation: Student
Siblings: 2 sisters and 1 brother
Diagnosed with MS: Aged 10
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
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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.
www.msaustralia.org.au/actnswvic
Thinkstock/Hemera
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.
GROWING UP WITH MS
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
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.
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
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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
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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.
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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.
www.msaustralia.org.au/actnswvic
Thinkstock/iStockphoto
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.”
GROWING UP WITH MS
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.”
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.
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
www.msaustralia.org.au/actnswvic
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.
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17
GROWING UP WITH MS
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
www.msaustralia.org.au/actnswvic
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
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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
www.msaustralia.org.au/actnswvic
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
www.msaustralia.org.au/actnswvic
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,
[email protected]
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
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EVENTS
ACT & NSW
For bookings or more information, email [email protected] or call 1800 042 138
INFORMATION SESSIONS
Wellness Days
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
Explore health promotion activities relating to
mind–body medicine, stress management and lifestyle
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)
Gloria McKerrow House, Deakin, ACT
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)
Gloria McKerrow House, Deakin, ACT
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
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
[email protected]
Victoria: Jon Adams on (03) 9845 2840 or email
[email protected]
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
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
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www.msaustralia.org.au/actnswvic
Thinkstock/Photodisc/Jeff Randall
Managing Fatigue Teleconference
Learn how to manage MS-related fatigue
Part 1: 4 May, 10.30am – 12pm
Part 2: 18 May, 10.30am – 12pm
VIC
For bookings or more information, email [email protected] or call 1800 042 138
INFORMATION SESSIONS
Refer to page 20 for a full list of teleconferences
Learn About MS
Suited to those recently diagnosed, meet others and
learn about MS and MS Australia services
2 April, 10am – 1pm
The Nerve Centre, Blackburn
7 May, 10am – 1pm
Brimbank
Lifemoves Program
A six-week structured peer support program provided
by Peers Inspiring Peers
16 March – 20 April (weekly), 12.30pm – 3pm
The Nerve Centre, Blackburn
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
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
The Nerve Centre, Blackburn
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
The Nerve Centre, Blackburn
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
The Nerve Centre, Blackburn
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
www.msaustralia.org.au/actnswvic
EVENTS
FAMILY & CARER PROGRAMS
Zooperdooper Family Day Out
For primary and secondary school-aged kids who
have a parent with MS
12 April, 11am
Melbourne Zoo
The Journey Club
A four-week program for families with primary schoolaged children, incorporating fun activities to help kids
learn more about MS
30 April – 21 May (weekly), 2pm – 4pm
The Nerve Centre, Blackburn
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
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
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21
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
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
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: [email protected]
Victoria: [email protected]
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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.
www.msaustralia.org.au/actnswvic
Roll of Honour
MS COMMUNITY
We would like to thank the following community members
who also helped raise funds for MS over the past three
months:
l
l
l
l
l
l
l
l
l
l
Alena Vydra Christmas tree fundraiser raised $1,140
Andrew ‘Zorro’ Notaras’ Shave the Mane charity auction
at Sydney Fish Markets raised $28,000
Barwon Valley (Golden Oldies) Golf Club raised $424
Fleur & Simone Van Den Berg and committee raised
$4,500 through the White Party at the Hunters Hill Club
Hillary Britton, Phillipa Hogg & Sarah Macsmith raised
$5,348.50 at their annual Melbourne Cup lunch in Orange
Jan Smith and her family’s Christmas light display raised
$6,539.70
Jason Worldon raised $1,830 through the inaugural
‘Hoops for MS’ in Sawtell
Lions Club of Bright raised $617.75
Participants in the 2010 Rebel Sport Run 4 Fun raised
$10,150. Top fundraiser Justin Veil raised $6,773
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.
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.
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:
www.msaustralia.org.au/actnswvic
ACT: Mirimba Kovner, (02) 6234 7030,
[email protected]
l NSW: Kerry Hill, (02) 8299 0134,
[email protected]
l Victoria: (03) 9845 2726,
[email protected]
l
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MS COMMUNITY
Volunteers
in Action
How our dedicated
volunteers are helping to
make a difference for people
living with MS.
All Wrapped Up
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.
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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
www.msaustralia.org.au/actnswvic
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.
www.msaustralia.org.au/actnswvic
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.
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MS COMMUNITY
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.
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www.msaustralia.org.au/actnswvic
MS COMMUNITY
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.
iThinkstock/Stockphoto
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
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.
LIB1161
There are a number of MS support groups operating throughout the ACT, NSW and Victoria.
To find a support
group 2:55
nearPMyou, please contact MS Connect on 1800 042 138.
Advert ApprovalV2.pdf
1
25/02/09
www.msaustralia.org.au/actnswvic
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MS COMMUNITY
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
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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
MS Connect on 1800 042 138.
www.msaustralia.org.au/actnswvic
HEALTH+WELLNESS
Research Study
Falls in Multiple Sclerosis
Giving Life Back
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
[email protected]
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
[email protected]
www.msaustralia.org.au/actnswvic
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.
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HEALTH+WELLNESS
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
living with MS.
For more information and to register for these events, see
pages 20–21.
Upcoming Wellness
Days for 2011
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.
Calling Expressions of Interest –
New Physical Activity Groups
Central Region:
l Albury/Wodonga, 1 May
ell run, extrao
rdinary guest
speCanberra,
od sessions to
akers,
date TBC
try, with carl
ing
essionals and
a wonderful lun
ch.”
Northern
Region:
Greater Western Sydney,
27 March
Southern Region:
Outer east metro Melbourne,
the help of hea
lth professional
oing to try and
s,
improve my life
date
TBC
courage more
people I kno
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.
w
S to attend the
se workshop
s.
you!”
Giving Life Back
Giving Life Back
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www.msaustralia.org.au/actnswvic
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 [email protected]
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.
HEALTH+WELLNESS
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.
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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.
For more information:
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
www.msaustralia.org.au/actnswvic
Thinkstock/Comstock Images/iStockphoto/Digital Vision/ Noel Hendrickson
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.
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.
For more information:
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
HEALTH+WELLNESS
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.
For more information:
Eat, Drink and Be Healthy, by W Willett. New York: Free Press, 2005
l
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.
For more information:
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.
For more information:
l Managing multiple sclerosis naturally: A self-help guide to living with MS,
by J Graham. Vermont: Healing Arts Press, 2010
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33
HEALTH+WELLNESS
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.
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.
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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
www.msaustralia.org.au/actnswvic
Thinkstock/Creatas
What is exercise physiology and exercise
therapy? How are they relevant to people
with MS?
HEALTH+WELLNESS
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
MS Connect on 1800 042 138.
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
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LIFESTYLE
Play it Safe:
Fire Prevention
at Home
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
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%
l
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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
www.msaustralia.org.au/actnswvic
Thinkstock/Digital Vision/ Michael Blann
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.
LIFESTYLE
The impact
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.”
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
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
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www.msaustralia.org.au/actnswvic
Thinkstock/Digital Vision/Michael Blann/iStockphoto
For more information and resources
WHAT’S NEW: MS-RELATED RESOURCES
Check out the latest resources, sourced by the MS Library.
Childhood MS –
a guide for parents
Carer Relaxation
(audio CD)
By the Australian
Government Department of
Health and Ageing
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
www.mssociety.org.uk/support_and_services/free_
publications/dad_boats.html
• Our mum makes the best cakes
www.mssociety.org.uk/support_and_services/free_
publications/our_mum_cakes.html
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 [email protected]
www.msaustralia.org.au/actnswvic
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