Emotional wellbeing

The Official Magazine of MS
www.ms.org.au
ISSN 1833-8941
Print Post Approved:
100003204
Autumn 2014
Subscribe to
Intouch and
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See page 4
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How to deal with
a ‘reality gap’
Be inspired
to extend
your fitness
Emotional
wellbeing
Ways to manage
your moods
‘SEEING MS’
CAMPAIGN
The story behind it
PASSIONATE
PURSUITS
Do something you love
www.facebook.com/msgetinvolved
Editor: Toni Eatts
Publisher: Multiple Sclerosis Limited
ABN: 66 004 942 287
Website: www.ms.org.au
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ISSN: 1833-8941
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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
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MS is a not-for-profit organisation that has
been supporting and helping people with
multiple sclerosis (MS) since 1956. Through
an extensive network of centres, branches,
support groups and health services, the
organisation provides specialist programs to
people with MS, their families, carers, friends
and healthcare professionals.
© Multiple Sclerosis Limited, 2014
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www.ms.org.au
Contents
CEO’s message
FEATURES
Welcome to the Autumn 2014
edition of Intouch. We’ve had a
great start to 2014 with our four
new General Managers working
hard to ensure that our organisation
continues to meet the needs of people
with MS. You’ll find short biographies
of our new General Managers on page
nine, and it’s my pleasure to introduce
you to our new Board members: Karen Hayes, Denise Cosgrove,
Scott McCorkell and Don Ferguson. You can find information about
them on our website www.ms.org.au
I’m excited about our Seeing MS campaign that was unveiled
in March and will continue through to MS Awareness Month in
May. This innovative campaign was initiated by Lyn Petruccelli, a
Melbourne woman living with MS, her photographer husband Louis,
and their daughter Laura. Learn more about them on page 18.
We’re championing Seeing MS because it will help employers,
the wider community and the family members of people living with
MS understand the impact of the ‘invisible’ symptoms of MS. I
encourage you to visit www.seeingms.com and to get involved.
I’d also like to share with you the good news that Carol Cooke,
an MS Ambassador and creator of the MS Mega Swim, was
honoured with a Member of the Order of Australia on Australia Day.
In December, one of our former employees, Robert Pask, won the
Excellence in Advocacy and Rights Promotion Award in recognition
of his work establishing the MS Australia Advocates Program. It’s
well-deserved recognition for both.
Added to this, we’ve had a terrific start to fundraising with the
MS Colour Dash being held in Sydney, Melbourne and Canberra
and the annual MS Melbourne Cycle. So thanks to everyone who
participated or volunteered for these events.
Coming up in on Sunday, 1 June, we have our annual MS Walk
and Fun Run where we’re aiming to raise $1.5 million to provide
much needed funds to expand our early diagnosis services. We
need 12,000 people to walk or run the beautiful courses in
Sydney, Canberra and Melbourne. Entry is free for people
living with MS, and I hope you’ll join us. Please encourage your
family and friends to ‘Get Fit for a Cause’, go to www.mswalk.org.au
and participate in this terrific event.
4
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13 My story: motivating myself
Justine Martin learnt many
valuable lessons from being
a young carer for her mother,
who struggled with MS.
14 Maintain your
emotional wellbeing
Gain insight into how you can
stabilise your emotions during
the challenges of MS.
18 Seeing MS
Meet the family behind our new
MS-awareness campaign, and
learn how you can get involved.
MS COMMUNITY
11 MS Walk and Fun Run
23 Community fundraising:
Thank you for your hard work.
24 Volunteers in action:
Meet people helping to
make a difference.
26 Peer support:
Sharing the MS journey
27 Support group profile:
Tweed MS Support Group
28 MS Ambassador profile:
Meet Beth Wurcker.
HEALTH & WELLNESS
30 Make peace with emotions
Discover ways to deal with the
gap between how life is and
how you want it to be.
32 Extend your fitness Learn how
an 85-year-old woman who has
MS does boxing drills to keep fit.
34 Easy access You can now
use the eHealth system
to store information.
LIFESTYLE
35 Passionate pursuits
Four people living with MS draw
strength from doing what they love.
REGULARS
6
10
12
20
22
29
39
News
NDIS update
Q&A
MS Events
Family and carers
MS Readathon
New resources
Robyn Hunter
Chief Executive Officer, MS
Subscribe to Intouch and win $500
We’re making some exciting changes to Intouch, so to ensure
you keep getting Intouch, please join our list of subscribers by
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We’re thrilled to announce we’re increasing our communication with the
MS community, so subscribe to Intouch and you could win a $500 gift card.
Get ready for a new-look Intouch newsletter and a new
Intouch e-newsletter. Via these two new versions of Intouch,
we’ll continue to give you health and wellness information,
stories about inspirational people who live with MS, MS
community news and MS research updates.
By providing a regular e-newsletter version of Intouch,
we’re increasing the number of times we communicate with
you. We’re also responding to the findings from the MS
Needs Analysis which show that people living with MS want
to receive information online because it’s more accessible,
convenient and anonymous. However, if you’d prefer to keep
receiving the printed newsletter, you can three times a year.
Remember, if you subscribe to either version of Intouch,
you’ll be in the running to win a $500 Coles Myer gift card.
Whichever choice you make,
it’s as easy as ‘1, 2, 3’:
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For the printed newsletter, make sure you send your
postal address to us via the subscription form and reply
paid envelope that arrived with this issue of Intouch, or
go to www.ms.org.au and register your postal address.
If you don’t give us your postal address, your
name will be deleted from our old mailing list.
If you’d like to receive Intouch online, go to
www.ms.org.au and register your email address.
To receive both the printed newsletter and the
e-newsletter version of Intouch, fill out the subscription
form supplied with this issue of Intouch, or go to
www.ms.org.au and fill out your details. Phone
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Win an Audi A3 Attraction 1.4 TFSI or $33,000 worth of gold bullion
Win first prize in our latest Art Union and you could
drive away in a brand-new Audi A3 Attraction 1.4
TFSI valued at $40,295. (The prize includes all
on-road costs and delivery, but comprehensive
insurance isn’t included.)
Or you could elect to receive $33,000 worth of gold
bullion to spend on whatever you choose.
Join Club MS and enter our exclusive draw to
win 2 oz of GOLD BULLION.
Ticket prices start at only $15 so that you’ll have
the opportunity to both win one of these incredible
prizes and help the MS organisation provide its vital
support to people who are living with MS!
The competition will be drawn on 5 April.
For more information and to purchase tickets, visit www.msraffles.org.au or FreecallTM 1800 287 367
SCO
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Advantages of an e-newsletter
Subscribe and win a $500 gift card
As part of our move to an Intouch e-newsletter, we’re
updating our list of Intouch subscribers for both our postal
mailing list and our email/e-newsletter list. That’s why we need
you to tell us whether you want to keep getting Intouch.
Send in your details on the form that came with this
magazine, or via registering online at www.ms.org.au, or via
calling MS Connect on 1800 042 138, and you’ll go into the
draw to win a $500 Coles Myer card (visit www.ms.org.au for
the terms and conditions). If we don’t hear from you, we’ll
delete your name from our old postal or email list.
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GO F U
WITH the
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By opting for our monthly e-newsletter
version of Intouch, you’ll be able to:
• receivecurrentnewsandinformationabout
our organisation more regularly
• learnaboutnewdatesforoureducational
and wellbeing events
• receivealertsaboutthelatestMS-researchnews
• learnaboutthelatesthealthandwellnessarticles
we post on our website
• keepuptodateinrelationtofundraisingevents
and volunteering opportunities
• clickthroughtovideos,audioandinformationon
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• bekindertotrees!
To subscribe to the e-newsletter version
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29/01/14 3:02 PM
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NEWS
MS Melbourne Cycle rides again
More than 3,000 cyclists took to the streets of
Melbourne on 23 February for the eighth MS Melbourne
Cycle, thanks to the help of 250 volunteers.
Steve Bracks, former Premier of Victoria, rode with his
sister Judith Paterson, who has MS. The pair garnered
media attention from The Age, Channel Seven, Channel
Nine and Radio 3AW.
Meanwhile, committed cyclists set out from 7am
to test themselves on the 50-kilometre course,
which included the challenging climb over the West
Gate Bridge. The people who were attracted by the
30-kilometre, family-friendly Fun Ride also had the
privilege of crossing the bridge.
The top fundraisers on the day were Sam Beck, who
raised $19,225, Thomas Dullard with $16,845 and Erin
Ede with $15,922. The top fundraising teams were Swan
Hill Supporting MS with $46,915, Team Dick Whittington
with $37,751 and Team Erin with $23,329.
At the time of writing, we were very pleased to
announce that almost $474,000 had been raised.
We owe a big thankyou to all the participants,
fundraisers, team members and volunteers. To see
highlights, visit www.msmelbournecycle.org.au ■
Judith Paterson
and Steve Bracks.
Award winners
Two well-known people who are living
with MS have been recognised for
their hard work on behalf of people
living with the disease.
Congratulations to Carol Cooke, an
MS Ambassador, who was awarded
a Medal of the Order of Australia
(OAM) on Australia Day. Canadianborn Carol migrated to Australia in
1995 and was diagnosed with MS in
1998, when she was 36. In 2001, she
created our MS Mega Swim program,
and at the 2012 London Paralympics,
she won a gold medal for cycling. Her
OAM was awarded in recognition of
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MS Colour Dash
For the first time our colourful new event, the MS Colour
Dash, was held in Melbourne and Canberra as well as
Sydney. Held on Australia Day, the event attracted almost
5,000 participants, and almost $268,000 was raised from it.
Last year, the first MS Colour Dash was held in Sydney,
at Darling Harbour. The event was so successful it was
expanded to Melbourne and Canberra, and the MS Society
of Tasmania was inspired to stage a version in Hobart.
In Melbourne, Docklands became the perfect backdrop
for the 2,000 participants, and in Canberra, 450 entrants
transformed Black Mountain Peninsula into a rainbow of
colour. In Sydney, the fun event returned to Darling Harbour,
and 1,850 participants were showered in coloured powder as
they ran or walked around the five-kilometre course.
In each of the cities, the fun continued after the event
when awards were presented for the top team and individual
fundraisers and for the ‘best dressed’ participant.
Thank you to the more than 400 volunteers who gave up
their time to help us stage the events and to everyone who
participated and raised funds for people living with MS.
To see all the highlights, go to www.mscolourdash.org.au ■
her remarkable sporting achievements
and her tireless charity work.
Meanwhile, in December, Robert
Pask, the MS Australia Advocates
Coordinator, was the recipient of a
National Disability Award, which is
an important part of the Australian
Government’s celebration of the
United Nations’ International Day of
People with Disability.
Robert was presented with the
Excellence in Advocacy and Rights
Promotion Award in recognition of
his tireless work as an advocate for
people living with MS. Eight years
ago, he established the MS Australia
Advocates Program, which now has
more than 20 advocates. Robert
and the program have had a
significant role in raising the profile
of issues such as job retention for
people who have MS and the
growing cost of healthcare. ■
Robert Pask
Carol Cooke
www.ms.org.au
News from MSAC
Former prime minister
John Howard with cricketing
greats Allan Border (left)
and Dean Jones.
MS Ashes dinner
Self-confessed ‘cricket tragics’ were out in force at a
dinner in celebration of the end of Dean Jones’s successful
MS Ashes Trek. Jones, a former Australian cricketer, travelled
from Melbourne to Sydney, visiting regional towns in which
he attended cricket clinics and other events in order to raise
awareness of MS. Along the way, he raised $220,000 for
people who are living with the disease.
During the trek, he was joined by other cricketing greats,
including Allan Border, Sir Ian Botham, Ricky Ponting,
Rodney Hogg, Michael Bevan, Stuart MacGill, Glenn
McGrath, Doug Walters and Michael Roberts as well as
golfers Jarrod Lyle and Brad Hughes.
The trek culminated in a dinner at the Sydney Cricket
Ground, at which VIP guests included former prime minister
John Howard, Allan Border, Glenn McGrath, Stuart MacGill,
Len Pascoe, Chris Gayle and Mike Coward.
“We’re honoured that Dean chose MS as his
preferred charity and that so many other notable
cricketing legends supported him,” says Robyn
Hunter, CEO of MS.
The MS Ashes Trek was made possible thanks to
the support of our sponsors Jayco, QBE Insurance,
Bob Jane T-Marts, the Pratt Foundation, Bunnings
Warehouse, Mitchelton Wines, Toyota and Spartan. ■
New chair for NSW MSAC
Rob de Ridder has stepped into the role of chair of the
NSW chapter of the MS Advisory Council (MSAC)
following the resignation of Mike Hemingway.
We thank Mike for his contribution as the inaugural
chair, and we thank Rob for accepting the position. Rob
was diagnosed with MS in 2007 and has been one of our
MS Ambassadors since 2009.
Rob lives in Sydney, works as an accountant and
regularly raises funds for the MS 24 Hour Mega Swim.
He’s keen to foster unity among what he calls the MS
family. “I want to make a contribution to help people who
have MS,” he says. “I’m relatively well, and I have a set of skills
that are useful. I want to ensure that whether people who
have MS live in a city or in a rural or regional area, they have
access to the facilities and services they need.” ■
www.ms.org.au
From Rob de Ridder, Chair, MS Advisory Council
NSW, and Andrew White, Chair, MSAC Victoria
There’s a saying: “You can choose your friends, but you
can’t choose your family.” And I have to say I’m always
amazed that ‘in the name of the family’, people from all
walks of life – and perhaps even people whose beliefs
differ – can get together and generally get along with
each other. Whether our family member is a blood
relative or an in-law, in most cases it’s for the sake of
the family that we put aside our differences, put on a
smiley face and ‘get on with it’.
More than that, though, when family members are
hurting or in trouble, true ‘family members’ will rally behind
them and lift them up, whether practically, physically,
spiritually or emotionally. We stand by our family
members no matter what happens to them, and we’ve
hopefully realised it’s healthy to express a difference of
opinion with them or argue with them. Ultimately, as long
as we shake hands or give each other a hug, and then
move on, we remain ‘family’ – that’s what family’s about,
even though we don’t choose our family.
I believe that having MS is like being part of a
family. We certainly didn’t choose to have the
disease. We all come from different walks of life and
have different beliefs. We mightn’t have common
blood, but we’ve all been touched by MS, and that’s
why we’re linked and why we’re family. We mightn’t
all like each other all the time, but we should be there
for each other and help each other: ‘United we stand;
divided we fall.’ We mightn’t all agree with each other,
but at the end of the day, we’re ‘the MS family’.
Are you looking to create or extend your own
MS family? You could join Facebook and become
a member of an MS group (MS Australia is a great
one), speak with a Peer Support Volunteer or even
become a Peer Support Volunteer yourself!
If you’ll allow me to use a bit of poetic licence, “Ask not
what MS can do for you; ask what you can do for MS!”
– Rob de Ridder
Email: advisory.council@msaustralia.org.au
Telephone: (03) 9845 2794
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Living with MS
NEWS
Kiss Goodbye to MS 2014
In May, help Kiss Goodbye to MS by joining MS Research Australia’s campaign,
and ‘wear, dare and share’ in order to raise vital funds:
WEAR red throughout May: You could add a different touch of red each day,
ranging from a red scarf, jacket or shirt through to a red tie, jewellery or lipstick!
Go to the Kiss Goodbye to MS (KGTMS) website to sign up as a fundraiser,
and invite your friends and family to sponsor you.
DARE to do something outrageous! Last year, Megan Healey, a mother of
three who has MS, drove her ride-on lawnmower from Melbourne to Sydney
and raised more than $50,000!
SHARE the message by holding your own KGTMS fundraising event and
spread the word on social media. Go to our website to find out about our
Instagram competition entitled A Photo Every Day in May.
Go to www.kissgoodbyetoms.org
Victoria’s People with MS annual
conference will be held on Saturday,
3 May at The Nerve Centre,
Blackburn. The guest speakers
will include our CEO Robyn Hunter
and Helmut Butzkueven, Associate
Professor, Department of Neurology,
Royal Melbourne Hospital. To
attend, call (03) 9846 4196.
Jessica Gray
Qualified for games
Vote for MS Australia
In 2014, Dick Smith Foods will give away a share of $1 million to charities
throughout the country in order to help to make a difference. The share of the
money will be based on the number of votes each organisation receives from
its supporters. To vote for MS Australia, take a picture of a Dick Smith Foods
product and for details visit www.dicksmithfoods.com.au/charity-breakthrough
Disclose MS at work
According to researchers, people who have MS might have a better chance of
staying employed if they disclose their diagnosis to their employer.
Dr Pieter Van Dijk and Dr Andrea Kirk-Brown, from Monash University, in
collaboration with Dr Rex Simmons, from Canberra Hospital and the Australian
MS Longitudinal Study, have examined the factors that have an impact on
employment for people who have MS. They found that job retention was
higher among the people who’d disclosed their diagnosis.
The results suggest that after disclosure employees may receive more
assistance in relation to their workplace accommodations, social support and
symptom management, so they’re able to remain in the workforce for longer.
Dr Matthew Miles, CEO of MS Research Australia, says, “This research
confirms employers really value a passionate, committed employee, regardless
of their background or extenuating circumstances.” ■
Jessica Gray, MS Ambassador and
Melbourne mother, has qualified for the
Commonwealth Games Para-Sports
Australian team for powerlifting bench
press. In a few months, Jessica will
learn whether she’ll be selected to
go to Scotland in August for the
Games. Meanwhile, in April, she’ll
be competing in the International
Paralympic Committee World Bench
Press Championships, in Dubai. ■
A new MS shop
We recently opened our 13th
MS Community Shop, which is
the 11th shop located in Victoria.
The shop is situated in the
Melbourne bayside suburb of
Hampton. We’d like to thank the
32 volunteers who are working in
the shop under our newly appointed
manager, Heather Andronicos.
MS Board adds four directors
Four new Non-Executive Directors have joined the
Board of Multiple Sclerosis Limited. All of them have been
inspired by people they know who live with MS.
Karen Hayes joined Guide Dogs Victoria as CEO in 2011
after eight years as Director, Corporate Engagement and
Human Capital with UXC Limited, an ASX300 company
and the largest Australian owned ICT Company.
Don Ferguson is General Manager of the Lifetime Care
and Support Authority of NSW, which provides treatment,
rehabilitation and attendant-care services for people who
have been severely injured in a motor accident.
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He’s a former Executive Director and Acting Deputy Chief
Executive of NSW Ageing, Disability and Home Care.
Scott McCorkell brings more than 30 years of marketing,
branding and advertising experience to the Board. He was
inspired to join by one of his employees, Jacqui Tracey,
who has MS and raises funds for MS Research Australia.
Denise Cosgrove has more than 20 years’ experience
in senior-management positions in human-resource
development, operational management, strategy,
planning, and communications. She joined WorkSafe
Victoria as Chief Executive in November 2012.
www.ms.org.au
NEWS
Meet our general managers
After being appointed last year as part of our ongoing transformation of the organisation,
our four new General Managers have settled into their roles. These four people constitute
the Executive Leadership Team and report to Robyn Hunter, our CEO.
Sandra Walker, General Manager
Service Innovation, joined us in
November 2013. Originally trained
as a nurse, she went on to gain her
RMIT Graduate Diploma in Quality and
Business Management and has held
a number of senior-management roles
spanning the public and private sectors,
primary health, community health, and
charitable organisations.
Throughout her career, Sandra has
remained passionate about maintaining
a focus on the consumer and has been
a willing advocate for people who are
most in need. She also firmly believes
in using evidence-based models that
are proactive and lead to making a
difference, in the longer term, to the lives
of the people she serves.
A Kiwi by birth, Sandra was also the
General Manager, Specialist Mental
Health Services at the Canterbury
District Health Board, in New Zealand,
and recently she held the position of
CEO of Gippsland Medicare Local.
Jack Hanson, General Manager
Commercial Development, has a
track record in leading complex
change programs, so we were excited
when he joined the organisation, in
December 2013. Originally from a
www.ms.org.au
farming background, he worked as
an economist with the Australian
Wool Corporation and in recent years
has held senior roles in disability and
community organisations. In those
positions, he was inspired by the
commitment and passion of staff to
make a difference and the positive
feedback received from clients.
Most recently, Jack has managed
the Information and Communications
Technology program at Carers
Victoria, and was General Manager,
Infrastructure and Governance,
and Company Secretary, at
Yooralla, an organisation for people
who have a disability. Jack has
postgraduate qualifications in
economics and business administration,
but more importantly, he has the
experience necessary for turning
theory into practice.
Jack brings us a wealth of
experience in leading positive and
sustainable change.
Dyranda Hortle, General Manager
Strategic Marketing and Sales, started
with us in December 2013. She has
more than 20 years’ experience in
health marketing, communications,
government relations, advocacy, and
building brand.
Most recently, she held the positions
of Director of Marketing Asia–Pacific,
Group Manager Global Marketing
Communications, and Regional
Director Southern Asia, for Cochlear,
the pioneer of the bionic ear and the
world leader in developing implantable
hearing solutions.
Before working at Cochlear,
Dyranda worked as Director of
Communications with the NSW
Government’s Department of Trade
and Investment, a position that included
being part of the management team for
the International Media Centre during
the Sydney 2000 Olympics.
Because of this combination of
experience, Dyranda has a dynamic
set of skills to apply to building our
organisation’s brand and its influence
across the philanthropy, consumer and
medical sectors. Dyranda has a longstanding interest in the not-for-profit
sector and is passionate about making
a contribution to the community.
Michelle O’Sullivan, Head of Human
Resources, was appointed to the
position in March 2013 following a
career that’s spanned a range of
not-for-profit and community-health
organisations. Since her appointment,
she’s assisted with recruitment of her
GM colleagues.
After Michelle started out in Claims
Management at the Transport Accident
Commission, she studied and worked in
the social-work arena before completing
her Masters in Organisational
Development. That accomplishment
grew into a professional interest in how
best to lead change and transformation
in organisations. Through her HR roles,
Michelle has been involved in major
transition projects and has had senior
change-leadership roles. Also, she has
20 years’ experience within a socialinsurance model that’s the basis for the
National Disability Insurance Scheme.
autumn 2014
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9
NDIS UPDATE
Learning lessons
We’ve been helping people who
are living with MS to connect
with the National Disability
Insurance Agency (NDIA).
Name: Brad Furneaux
Age: 54
Diagnosed: 1999
Lives: Newcastle, NSW
I was born prematurely and had problems with my
tendons, which meant I couldn’t walk. When I was five, I
underwent a series of operations to lengthen my tendons,
and after four years in leg irons, I eventually walked
unaided, although I had a limp.
By December 1999, I was married, my wife and I had
two children under the age of five, and I was working for
Newcastle City Council collecting money from parking
meters. One day, I noticed that my legs were feeling
tired, and the next morning, when I woke, I found I was
paralysed. I went to hospital, but the doctors were focused
on my medical history, so I wasn’t diagnosed with MS till I
saw a neurologist in Sydney.
After about three months, my mobility returned, but I’ve
been having to use Canadian walking sticks for balance
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if people wish to have a team member from our organisation
involved in their planning, they can. This involvement is
especially helpful for people whose MS is affecting their
ability to process information.”
We’ll be hosting Conversation Forums throughout
the ACT, NSW and Victoria in order to help people
understand what the NDIS means for them. For more
information, visit www.ms.org.au ■
More information
You can find more information on the NDIS
website, www.ndis.gov.au and we also have an
NDIS section on our website, www.ms.org.au which
includes a ‘Frequently Asked Questions’ section,
the ‘NDIA Conversation Preparation Checklist’ and
other useful information.
and a wheelchair for going shopping. I make myself remain
mobile – I go to the pool every day, walk in the water for
30 minutes and then swim for 30 minutes.
For five years, I’ve been volunteering once a week
at the community centre run by the Sisters of Mercy at
Tighes Hill. About 50 clients who either are seniors or have
a disability come to the centre, and I help them with crafts
or to play bingo. A few months ago, one of the sisters
suggested I fill out the forms for the NDIS.
I had two interviews with the people from the NDIA.
I told them I go swimming, and they asked whether I
went to the gym. When I said I couldn’t afford to go,
they said they’d pay for both the swimming and the gym
membership. Going to the gym has been fantastic. I also
mentioned that I’d fallen over a few times in my kitchen,
laundry and toilet despite the fact I use the sticks. They
offered to get non-slip linoleum, which has been laid, and
I now find it so much easier to walk around those rooms.
The NDIA staff members have been approachable, and I
really appreciate their help. ■
www.ms.org.au
Thinkstock/mangostock
As well as assisting people in the Hunter and Geelong
trial sites to connect with the NDIA, we’re gearing up for
the 1 July launch of the trial in the ACT.
“We’re collecting good information about the types of
experiences that people have had when engaging with
NDIA staff members, and monitoring who’s meeting the
eligibility criteria,” says Deb Farrell, our Senior Manager
NDIS Futures. “We’re helping the people who are eligible
to prepare for their conversation with their NDIA Planner
in a number of ways, such as providing our ‘Conversation
Preparation Checklist’. Both people who are living with MS
and NDIA staff members have said that the information and
checklist have been of great help.”
In addition, staff members have been building good
rapport with NDIA Planners and Local Area Coordinators,
and that effort was important so that our organisation
could monitor the outcomes for people who are affected
by MS and are living in one of the trial sites.
According to Deb, “We need to understand how decisions
are being made so we can advocate for people who are
affected by MS, so they can be supported in ways that work
for them. We’re really pleased that the NDIA has agreed that
Tim Ryan walked with
his wife Leanne.
Get fit for a cause
On Sunday, June 1, we’re aiming
to raise $1.5 million to fund
essential services and support
for people living with MS while
the search for a cure continues.
The MS Walk and Fun Run is an enjoyable, healthy way
to join family, friends and thousands of other enthusiastic
supporters who are raising money for people who have MS.
The event is held simultaneously in Sydney, Melbourne and
Canberra, and caters for people of all ages and fitness levels.
All walk courses are stroller and wheelchair friendly, and we’re
aiming to encourage 12,000 people to take part.
This year in Sydney, the walk and the fun run start and
finish at the same location – Tumbalong Park, Darling
Harbour. Choose the walk that suits you – either 5, 11 or
16 kilometres. The shortest is around the beautiful Sydney
Harbour foreshore, while the longer courses also take in
the picturesque Royal Botanic Gardens, the iconic Sydney
Opera House, and Pyrmont Bridge. If you want to ramp up
your fitness training, the run offers a choice of either a 5- or
9.5-kilometre course around the stunning harbour foreshore.
In Melbourne, you can run or walk 5 or 10 kilometres,
starting and finishing at the beautiful Palms Lawn, Albert Park
Lake. The scenic route takes in the Melbourne city skyline.
www.ms.org.au
Tim’s top tips
Last year, Tim Ryan took four hours to cover the
5-kilometre course around Melbourne’s Albert Park, and
this year he’ll be happy if he equals that time. The former
Victorian Football League star was diagnosed with MS
five years ago, and he’s been taking part in the MS Walk
and Fun Run ever since. “This year will be my fifth,” Tim
says. “I keep fit and healthy so once a year I can walk
around Albert Park Lake.” He’s joined by his wife Leanne,
his family, in-laws, friends and colleagues.
Tim is also a keen fundraiser. “I set myself a target,
and I had my best fundraising year in 2012 when I raised
$12,000. This year, I’m aiming for more than $10,000.”
Here are Tim’s tips:
• “Startgettingfitbywalkingaroundtheblocks
near your home.”
• “Encourageyourfamilyandfriendstojoinyou.”
• “Don’tbeshyaboutaskingforsponsorship.Evenif
the person says no, you’ve raised awareness of MS.”
• “Approachlocalbusinessesforsupport.You’llbe
surprised by their generosity.”
• “Activateyoursponsorshippageonwww.mswalk.
org.au and upload photos and videos, and update
the text, to attract more sponsorship.”
• “Ifyouhavetheabilitytorun,useit;don’ttakeitfor
granted. The same goes for walking.”
• “Bepartofagreatdayout,andhangaround
for the barbecue afterwards.”
To learn more about Tim, turn to page 36.
In Canberra, join thousands of others for a warm-up at
Rond Terraces in Commonwealth Park before setting off on
a scenic 5- or 10-kilometre walk or run around glorious
Lake Burley Griffin.
You can join as an individual or get a team of family and
friends together, and we’re pleased to offer free entry to
people living with MS. So, get into the spirit of the day by
wearing red or a fun costume for a chance to win a prize.
And be sure to stick around for food and entertainment
for the whole family.
“The MS Walk and Fun Run is one of the most popular
MS events,” says Robyn Hunter, CEO of MS. “It’s a great
opportunity for the entire MS community and their friends,
family and colleagues to come together. It also marks the end
of MS Awareness Month, which culminates in World MS Day
on 28 May, so I encourage you to get involved, to help us fight
the invisible disease that is MS and raise vital funds for the
provision of care and support for people living with MS while
the search for a cure continues.” n
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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.
I’ve been completing surveys for
the Australian MS Longitudinal
Study for several years. What has
been achieved in this project?
– Robert, NSW
Results of research
As a result of AMSLS data about air-conditioning use by
people who have MS, in most states and the ACT, extension
of energy rebates based on medical need has been
successfully advocated to include people who have MS. Also,
according to the results of analysis of the psychological and
social problems faced by people who have MS, untreated
depression is frequently one of the barriers that limits the
quality of life and self-management of people who have MS.
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This data helps service providers to assist people with MS
to overcome these barriers and empower the person with
MS so they can manage their disease.
A series of employment surveys and ‘cost’ diaries have
been the source of crucial data about why people who
have MS experience a higher level of under-employment
compared with people who have another type of chronic
disease. This information has underpinned two reports
about the economic impact of MS in Australia, so is a
powerful tool for advocating improvement of government
support for people who have MS.
Most recently, the National MS Needs Analysis was
conducted through the AMSLS in collaboration with Deakin
University. As a result, vital information was provided about the
needs of people who have MS and which areas of need are
being inadequately met. MS Australia and the state-based MS
societies will use the data to develop policies and services for
supporting people who have MS.
Dr Rex Simmons, from Canberra Hospital, who has
managed the AMSLS for more than 11 years, retired earlier
this year. MS Australia and MSRA consider the AMSLS
to be a valuable resource from which crucial data can be
continually obtained so that care of people who have MS
can be supported and advocacy can be undertaken on their
behalf. To this end, a research team at the Menzies Research
Institute Tasmania, led by Dr Ingrid van der Mei and Professor
Bruce Taylor, has been selected to manage the AMSLS. The
researchers are internationally respected for their work in the
MS field and will bring a wealth of experience and expertise
to the project. They’ll be collaborating widely with MS
researchers and the members of the MS societies in order
to set the priorities for the research and to pursue the
important issues for people who have MS. The participants
will be given more details in due course. ■
We want to thank Dr Rex Simmons for his good work
and the enormous contribution he has made to the
success of the Australian MS Longitudinal Study.
This article was written by Dr Lisa Melton, Research
Development Manager, MS Research Australia.
www.ms.org.au
Thinkstock/Torsakarin
The Australian MS Longitudinal Study
(AMSLS), also known as the MS Life
Study, has been running since 2003. It’s a
research ‘platform’ funded and coordinated
by MS Research Australia (MSRA) to
investigate the issues that are of practical importance for
people living with MS. From this long-running, survey-based
research tool, many valuable insights have been provided in
relation to the daily challenges of living with MS, as well as
powerful data for supporting advocacy and informing the
planning of services for people who have MS.
The project is overseen by a Steering Committee that
consists of representatives from many parts of the MS
community, including the MS societies, social and allied
health researchers, and people affected by MS.
Originally, in 2002, the researchers recruited 2,000
volunteers who had MS, and that number has now grown
to include more than 3,500 Australians who have MS and
have volunteered to receive the surveys on a regular basis.
At present, around 50 per cent of respondents complete a
paper survey and 50 per cent complete an online survey. The
people who are registered with the AMSLS are committed to
the research, so every survey attracts a very high response
rate – usually higher than 80 per cent. According to a recently
published comparison with other Australasian data sets,
this large national sample of people who have MS is highly
representative of Australia’s MS population. The surveys are
therefore a very powerful tool for providing evidence-based,
statistically sound data about the impact of MS.
The AMSLS has conducted numerous nationwide
self-report surveys about topics such as the economic
impact of MS, employment, quality of life, air-conditioning
use, medication use, and seeking of information online.
The researchers have conducted many of the surveys in
collaboration with academic specialists in various fields.
My story: motivating myself
As a young carer, Justine Martin watched her mother struggle
with MS, and she’s now facing similar challenges.
In August 2010, Justine Martin
was living with her fiancé and two
teenage children in Jane Brook, a
suburb of Perth. “One day, my
vision became blurred, as though
someone had put Vaseline over
my eyes,” she says. By the time
the symptom had become evident,
Justine had already won her battle
against obesity and had dealt with
a few other health issues, including
migraines. After having various tests,
she wound up in a neurologist’s office.
“I asked him whether it could be MS,
because Mum had been diagnosed
with it in 1980. It’s always been in my
head, because two of my mother’s
cousins also have MS.”
At first, the neurologist attributed
Justine’s vision problem to a cyst that
had been found in her brain, but by
March 2011, he had confirmed MS.
“My mother began with relapsing–
remitting, went to secondary
progressive and died when she
was 49,” Justine says. “Mum never
looked after herself, and when she
stopped working, she gave up on life.
I don’t want to be that person – I fight
it every single day.”
The family moved to Victoria in
December 2011, but about 12 months
later, Justine’s fiancé left her, saying
he couldn’t cope with her MS. “It was
a horrific time, but it gave me my life
back,” she says with enthusiasm.
“When he was here, I had to mask
my symptoms, because he wouldn’t
acknowledge I had MS. That was
really stressful.”
Now 43, Justine lives in Drysdale,
Victoria, with Alexandra, her 16-yearold daughter. Her son, Zakariah, 20, is
in the army and is based in Townsville.
Despite experiencing some distressing
relapses, Justine has embraced
her MS. “At times, I’ve had difficulty
walking, but the most disturbing
Justine Martin
symptoms are cognitive. I can’t count
any more, which means I find it difficult
to use money, and I can’t multi-task;
for example, I can no longer cook and
have a conversation at the same time.”
In order to cope with the challenges
of MS, Justine uses skills she learnt
between ages 28 and 35, when she
shed 46 kilograms and ultimately
became a Weight Watchers leader
before taking a job at Jenny Craig.
“I’m a good goal setter, and I learnt
how to motivate myself. If I feel I’m
getting depressed, I do things that
make me happy.”
One of those activities is painting.
After her neurologist suggested she
find a hobby, Justine took art lessons.
In March 2012, she joined the Geelong
MS Confident Living Program, and
discovered she had talent – in fact,
she won the Allan Merigan People’s
Choice Award in the State Trustees
Connected Art Exhibition 2013, and
she’s donated two artworks that
were auctioned at the MS Ashes Trek
launch in Melbourne. “Painting is my
form of meditation,” she says. “I flow
with the paint.”
Other activities that make her
happy include catching up with friends
and going to the beach. Also, she’s
determined to stay physically strong.
Before MS, she did competitive
weightlifting, but she had to stop when
she had a relapse. Last year, she
took up the sport again. “In October,
I competed at the Australian Masters
Games in Geelong, and won two gold
medals in the Powerlifting event. I like
lifting heavy things: it’s satisfying.”
In her quest to live with MS in a
much healthier way than her mother
did, Justine has also undergone two
years of counselling and has been
encouraging her children to seek
counselling. “I’m aware of what they’re
going through, because I went through
it when I was a child. I allow myself to
cry and get angry, but I ‘vent’ to other
people who understand, rather than
to friends and family.”
She often does so via the
Supporting Each Other with MS
in Australia page she created on
Facebook. “It has 200 members, and
I’ve made some great friends.”
So, although her world seemed
to be collapsing when her fiancé
left, Justine says that 2013 was a
successful year for her. “I’m dating
again, and my profile says I have MS:
like me, the people I know have to
accept that MS is part of my life.” ■
To see Justine’s art, go to
www.facebook.com/pages/JUZTart/295281423856712?ref=hl
To join the Facebook page
Supporting Each Other With MS
in Australia, go to
www.facebook.com/
groups/232483413440380/
Would you like to share your story with other people living with MS?
Call the editor on (02) 8484 1316.
www.ms.org.au
autumn 2014
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We all experience stressful events that
can affect our mood and emotions,
but what is emotional wellbeing, and
how can we nurture it?
When you’re dealing with the symptoms of MS, the
disease’s emotional impact can be difficult to cope with;
in fact, one of the challenges you face lies in determining
whether a feeling of anxiety, low mood or grief is appropriate
or whether you need additional support.
For more than a decade, Catherine Condon, a Clinical
Neuropsychologist and therapist who’s based in Melbourne,
has been helping people who are living with MS. She says
that people who have MS find it useful to understand that
there may be certain times during the course of the disease
when mood and emotions are more vulnerable to change.
These include:
• atthetimeofdiagnosis
• duringarelapse
• whentheylosesomeabilitytofunction,suchasin
having to use an aid
• whenthediseaseprogresses
• whentheyhavepain
• whentheyneedtomakechangestotheir
employment arrangements
• post-natally,whenMShasanimpactonthe
mother’s close relationships
• whentheyhavealotofotherstressfactorsintheirlife.
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Maintain
your
emotional
wellbeing
“Alterations in mood and emotions are a very normal part
of living with change,” Catherine says. “For your emotional
wellbeing, it’s essential you be aware that these responses
are typical in relation to change and that you have the ability
toacknowledgethemandmovethroughthem.
“It’s vital you learn to care for yourself at these times
so you can maximise your potential. Two things are also
helpfulsoyoucanenableyourselftokeeplivingwell:early
recognition of the signs that you’re becoming run down
and ability to respond in ways through which you calm
your body and mind.”
The only time that changes in mood and emotions
become problematic is when they have an ongoing
impact on the person’s ability to function in the way
he or she wants to.
When signs of irritability, frustration, low motivation,
hopelessness, anger, worry or difficulty in concentrating
become persistent and cause you to stop doing the
thingsthatareimportanttoyou,youmightneedtoseek
help from your GP, a psychologist, a counsellor or another
type of health professional.
“It’softennoteasytoaskforhelp,”Catherine
recognises. “But all health professionals – including GPs
andpsychologists–wouldhighlyencourageyoutoseek
help as soon as you become concerned, because an early
response can be most effective in ensuring you remain
empowered when the health professional is responding
to your needs.”
Catherine explains that many factors can influence a
person’s mood. “It’s important that your health professional
www.ms.org.au
Thinkstock/SteveHix/SomosImages/Corbis/WavebreakmediaLtd
COVER STORY
Thinkstock/SteveHix/SomosImages/Corbis/WavebreakmediaLtd
COVER STORY
be thorough when he or she is investigating the cause of
youralteredmood,soheorshemighthelpyouworkout
whether other MS symptoms, such as fatigue, poor sleep,
incontinence or heat intolerance, are contributory factors.
Heorshewillalsoneedtoconsideryourmemoryand
thinkingwhentreatingthechangesinyourmood.”
Complex journey
C
AR
ER
S
“The fact that the MS journey is complex is why the person
who has the disease must be at the centre of how he or she
respondstothechanges.However,itcanbehardforthe
person to be ‘at the centre’ of the response, because low
mood can affect motivation or accompany confusion. At
those times, the person’s family members and carers
can help him or her address the changes that are having
an impact on the person’s ability to function.”
So, what is emotional wellbeing? Catherine defines it
as “living well”, and says that the signs you’re living well
include the fact that you are:
• connectedtootherpeople
• abletoexpressyourneeds
• givingyourselfpermissiontorestandplay.
“MS affects every person differently,” she says, “but how
he or she copes will depend on the person’s personality,
copingskills,interests,strengths,socialnetworkandselfimage.However,it’swelldocumentedthatinordertolive
well and maintain emotional wellbeing, people need to
knowthatthekeyliesincombiningseveralstrategies.”
The strategies are as follows:
• Makingsureyourdietisnutritionallybalanced
• Exercisingregularlybutsensibly,especiallyifyou
experience fatigue while exercising
Watch for signs
It’s a messagethatcarershearoften:“Lookafteryour
own physical, emotional and spiritual wellbeing.”
In relation to emotional wellbeing, Catherine Condon,
aClinicalNeuropsychologistwhoworkswithpeople
with MS, urges carers to watch for signs that they’re
feeling more ‘negative’ than ‘positive’, because the feeling
might be an internal warning that they’re needing to
reconnect with their own life.
“Thekeystoemotionalwellbeingthatareoutlined
in the main article in this issue of Intouch are equally
applicable to carers,” she says. “Carers need to have
thecapacitytocommunicateandexpresswhatit’slike
for them during their journey with MS. They need to stay
connectedwiththeirownlifeandtotalktotheirfriends.
Theyalsobenefitfrombeinginasupportgroup,talking
to their GP or undergoing counselling if they need it.”
Catherine points out that it’s essential that carers
protect their physical health as well and that they
remain alert to the possibility of injury. “You have to
lookafteryourback–don’tdoanythingthroughwhich
you might endanger your physical health, because pain
and injury can lead to a compromising of your
own emotional wellbeing.”
Shealsorecommendsthatcarersprioritisetaking
timeoutforthemselves.“Makesureyoumakeyourown
rest and respite a priority. Ensure you organise them
beforeyoustarttostrugglewithmakingthemhappen.
Ifyou’reproactiveandyoulookafteryourselfbeforeit
becomes possible for the stress of caring to have an
impact on your ability to function, there’s less chance
you’ll become overwhelmed. As a result, you’ll find it
easiertomanageyourroleasacarerandmakelife
better for the person who has MS.”
www.ms.org.au
• Gettingtheamountofrestyouneedandhavinga
healthy sleep pattern
• Ifpossible,maintainingtheinterestsandhobbiesyou
enjoyed before you were diagnosed
• Ifyou’repreventedfromcontinuingyourinterests
because of the MS, finding other ways to express
yourself through which you empower yourself
• Havingpeoplearoundyouwhoyoucantalkyour
problems over with, such as friends, the members of a
support group or a counsellor
• Feelingconnectedtothewidercommunity
• Learningabouttheavailableresourcesandservices
“If you incorporate these strategies in your everyday life,
you’remorelikelytobeabletocopewhenyou’redealta
problem in life or you’re provided with another challenge due
totheMS,”Catherinesays.“Ifyoudon’tincludethesekey
strategiesinyourday-to-dayliving,lookforawayyoucan
incorporate them – but don’t get overwhelmed; just start
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COVER STORY
with the little things you can manage to do for yourself,
and progress from there.”
Essence of health
Meanwhile,DrCraigHassed,ageneralpractitioner
and senior lecturer in Monash University’s Department
of General Practice, agrees that when you understand
how to maintain emotional wellbeing, you can better
cope with your MS.
DrHassedisalsotheauthorofthebookThe Essence
of Health: The seven pillars of wellbeingandtheco-author,
with Dr Stephen McKenzie, of Mindfulness for Life.
“Although maintaining good emotional health isn’t easy,
it’s worthwhile committing to, because poor emotional
healthleadstoimmune-systemstress,whichcancause
yourMStoprogressmorerapidly,”DrHassedwarns.
“It’s important to have a supportive health practitioner
such as a GP, life coach, psychologist or counsellor who can
guideyou.”Healsorecommendsfindingasupportgroup.
“Whenyoumakechangeswithinagroup,yougaingreater
insight and prevent yourself from becoming overwhelmed so
thatyoucanmakethenecessary‘healthy’changes.When
youdomakethechanges,overtime,you’llnoticethatyour
quality of life significantly improves.”
DrHassedusestheacronymESSENCEtodefine‘the
seven pillars of wellbeing’, as follows:
• Education: Arm yourself with the information you need.
How we can help you
Our MS organisation provides a variety of programs to
helpyoualongyourroadtoemotionalwellbeing.Here’s
an outline of some of them:
• Werunphysical-activitygroupsthroughouttheACT,
NSWandVictoria,andtheyincludeHeartmovesfor
MS, yoga, maximising strength and flexibility, and
aquatic exercise.
• WeholdWellnessDaystohelppeopledevelop
strategies for sustaining their health and wellness, and
some examples of the physical activities we conduct
are yoga, tai chi, and ‘stretch and strength’ exercises.
• Weconductpeer-supportprogramsforpeople
who have MS as well as for their family members
and carers, and the type of support includes
one-on-onephonesupport,onlinecommunities,
andface-to-facesupportgroups.
• InordertosupportVictorianswhoaresociallyisolated,
weconducttheConfidentLivingProgram,inwhichwe
provide a range of social and physical activities.
• WeprovideinformationviatheMSConnect
phone number, 1800 042 138.
• AtourMSLibrary,wehaveacollectionof
resources about emotional wellbeing. For more
information, please call (03) 9845 2809 or email
library@msaustralia.org.au
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• Stress management:Learnmeditationormindfulness
to help yourself manage stress.
• Spirituality: Find purpose and meaning in your life.
• Exercise: Do it regularly so you stay fit, help yourself
sleep and lift your mood.
• Nutrition: Keep your diet low in saturated fat and rich in
omega-3fattyacids,whicharetwodietarycomponents
that are recommended for people who have MS.
• Connectedness: Cultivate relationships through which
you’re supported and enriched.
• Environment: Ensure you get enough Vitamin D,
becausealinkhasbeenestablishedbetweenMSand
insufficient rates of the vitamin. Keep your mood lifted by
enjoying sunlight whenever possible.
“If you base your life on these ‘pillars’, you’ll find there’s an
enormousamountyoucandoforyourself,”DrHassedsays.
HealsorecommendsattendingMSWellnessDaysand
MS Peer Support Group meetings and that you consider
programs offered by organisations such as the Gawler
Foundation and Victoria’s Anxiety Recovery Centre.
Name: LindaEdgerton
Age: 48
Employed: Freelance writer and copy editor
Lives: Geelong
Diagnosed: 2002
I was diagnosed
with multiple
sclerosis in
2002 and
have been
stable, with
no relapses,
for the past
nine years.
Symptoms
such as pain and
numbness in my
face, left arm and legs
come and go, and are mild
comparedwiththeoriginalattacks.Ironically,having
residualsymptomsfromearlyattackshashelpedmeto
prevent further relapses. They’re one of my measures
of wellness – an accurate warning sign of whenever
I’mrundownandIneedextraself-careandrest.Itreat
those times as a ‘health crisis’ and do everything I can
to calm my body and mind.
The road to diagnosis was a confusing maze. In
May 2002, I experienced tingling in my lips and chin
area.IwasabouttotraveltoAfrica,soIaskedthe
doctor about the symptom, and he told me it was
probably due to stress – a reasonable assessment.
www.ms.org.au
COVER STORY
MS Library resources
Books available for loan
• The Essence of Health: The
seven pillars of wellbeing, by
DrCraigHassed
• A delicate balance: Living successfully
with chronic illness, by Susan Wells
• It’s not all in your head: Anxiety,
depression, mood swings, and
multiple sclerosis, by Patricia Farrell
(alsoavailableasane-book)
• Keeping the blues away: The tenstep guide to reducing the relapse of
depression,byCateHowell
• Living a healthy life with chronic
conditions: Self-management of heart
disease, arthritis, diabetes, asthma,
bronchitis, emphysema and others,
byKateLorig
• MS and your feelings: Handling the
ups and downs of multiple sclerosis,
by Allison Shadday
• The ‘can do’ multiple sclerosis
•
•
•
•
guide to lifestyle empowerment,
by Patricia Kennedy
Multiple sclerosis: A self-care guide to
wellness, byNancyHolland
The life program for MS: Lifestyle,
independence, fitness, and energy,
by Susan Epstein (also available
asane-book)
The stress and mood management
program for individuals with multiple
sclerosis: Workbook, by David Mohr
You don’t look sick! Living well with
invisible chronic illness, byJoySelak
Online resources
From the MS International
Federation
• MS in focus: Emotions and cognition
from the MS International Federation
www.msif.org/about-us/
communicating-ms/ms-infocus-magazine/emotions-andcognition.aspx
Five months – and many symptoms and tests later – I
was diagnosed as having MS.
Atthetime,Iwasworkingincommunicationsat
auniversityandwaslivingafullandbusylife.However,
IalwaysfeltasifIwasstrugglingtokeepup,andit
came as a relief when I was finally diagnosed with MS.
AlthoughIkeptworkingfulltimeincommunications
and events management for the next 10 years, I also
createdasimplerlifealongsidethefull-timejob.Ilearnt
tosaynotosomethings,andstartedenjoyingcooking
nutritiousmeals,walkingregularly,meditatingand
havingmyotherapy[aformofmassage].Itookfull
lunchbreakswhenIwasatwork,includedresttime
inmyweekends,andmadegettingenoughsleepmy
number-onepriority.Inmanagingmysymptomsand
energy, I found that the MS became a catalyst for
improving my life.
I realised early on that I needed support to help
myself deal with the emotional aspects of my diagnosis.
My family and close friends were helpful, but the
understanding I needed came from discussing my
situationwithasocialworkerfromtheMSorganisation,
attending the ‘Understanding MS’ seminar and
connecting to an MS Peer Support Group in Geelong.
I started to realise that my life still held much promise,
even though I had MS. With patience, adjustment,
www.ms.org.au
From the UK MS Trust
• Depression factsheet www.mstrust.
org.uk/shop/product.jsp?prodid=315
• Mood, depression and emotions
(MS Essentials 10)
www.mssociety.org.uk/msresources/mood-depression-andemotions-ms-essentials-10
• Living with the effects of MS (MS
Essentials 28) www.mssociety.org.
uk/ms-resources/ms-essential-28living-with-ms-effects
From the US National MS Society
• Emotional changes
www.nationalmssociety.org/aboutmultiple-sclerosis/what-we-knowabout-ms/symptoms/emotionalchanges/index.aspx
• Stress
www.nationalmssociety.org/livingwith-multiple-sclerosis/healthy-living/
stress/index.aspx
learning, effort and new dreams, I could maintain
inner harmony and joy for life.
Inmid-2013,ImovedfromMelbournetoGeelong,
myhometown,andbeganworkingasafreelance
writer.I’mnowbackinMelbournetwodaysaweek,
in an ongoing communications role, and on the other
days,IworkfromawonderfulofficespaceI’vehired
in a warehouse that’s filled with creative people. It’s
an inspiring environment, and I’m sure the creativity of
mywritingworkandtheblogI’vestartedarehelpfulin
supporting my health.
Intheyearafterthediagnosis,Iwokeeverymorning
and found that the first thing that popped into my head
was I have MS.Itwasmydailyrealitycheckthatthings
were different and that my future was uncertain. The
same thought arose throughout the day. Gradually, over
time, I became more accepting and hopeful, and now,
even though I have residual symptoms, it’s rare for me
to feel sad about the fact I have MS. I don’t fear it. Of
course, it’s helpful that my MS has been stable for a
longtime,butInevertakethatstabilityforgranted.Life
is more than MS, and life is unpredictable for everyone.
In having MS, I’ve come to relish life’s journey and to
appreciate the joys of small, everyday pleasures. n
You can read Linda’s blog at www.lollypopbeach.com
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SPECIAL FEATURE
This year, our annual MS Awareness Month of May becomes
Seeing MS Month as we continue to increase understanding of how
the disease’s ‘invisible’ symptoms affect people living with MS.
As experts in the field of multiple sclerosis, we’re aware of the wide range of symptoms that affect people who have
MS. We also know that many of the symptoms are both ‘invisible’ and hard to explain to loved ones, friends and work
colleagues. As a result, the person who has MS and is dealing with symptoms such as fatigue, pain, pins and needles,
vision problems or lack of balance can feel frustrated and alone. We want to end this isolation by reaching out to the
wider community in order to promote understanding of MS symptoms. We hope this will help people who are affected
by the disease to secure the understanding they need from their health professionals, employer, colleagues, friends and
family members. Help us spread the word by encouraging your family and friends to tell everyone they know about our
Seeing MS campaign, and join in the fundraising by getting involved in the MS Walk and Fun Run on Sunday, 1 June.
Laura, Lyn and
Louis Petruccelli
in New York.
Meet the Petruccellis
Every morning, when Lyn Petruccelli wakes, she cautiously
sits up and tests how dizzy she feels. On a good day, she’ll
feel woozy, knowing that when she stands to walk, she’ll
stumble till she gets her “sea legs”. On a bad day, she finds
it difficult to walk, the vision in her right eye might be blurred,
and the right side of her body feels heavy. Some days, she
mightn’t be able to get out of bed, but she usually pushes
her way through these inconvenient symptoms and goes on
to shower, dress and get ready for work.
Fortunately, Lyn handles the administrative side of her
husband’s thriving photography business, so if she has
to have time off because of her MS symptoms, she can
take it. Louis Petruccelli is a successful photographer in
the advertising industry, and Laura, 23, the younger of the
couple’s two children, is a ‘creative’ – a writer and an art
director at the renowned agency Grey Australia. Lyn first
experienced a bout of blurred vision, and then, in January
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2009, when she suddenly lost the strength in the right
side of her body, she thought she’d suffered a stroke. She
sought medical help, and according to an MRI, she had a
lesion on her brain, but it wasn’t till six months later, when
she was overcome with dizziness and nausea, that she was
told she had MS. Although the nausea eventually faded,
the dizziness remained. “You get used to it,” she says now,
stoically. “Most days I can manage unless it’s hot. If it’s hot,
the dizziness gets worse, the weakness in my right side
increases, brain fog kicks in, and I get fatigue – in fact, it’s
the ‘hit the wall’ fatigue I can’t get used to.”
The only way Lyn has been able to manage her
‘invisible’ symptoms, including fatigue, is to rest for up
to four hours from 1pm onwards.
For Laura, the fatigue is the most distressing aspect
of her mother’s condition. “It’s sad to see how MS halves
her day,” Laura says. “Mum gets up earlier so she can fit
more in, but every afternoon, she has to rest.” Laura is also
acutely aware of the effort it takes for her mother to seem
‘normal’. “It’s exhausting and frustrating for her to put on
a happy face when she’s so fatigued. We can’t see her
symptoms, so it’s hard for us to really understand.”
In fact, Lyn was feeling frustrated one morning when
she came across a blog in which a woman who had MS
was describing how she felt as though she was wearing
diving flippers when she was walking. “I read the quote
out to Louis and said to him, ‘Wouldn’t it be great if we
used photography to visualise how I feel?’” Having a keen
photographer’s eye, Louis realised that Lyn had stumbled
on to a great idea, so he called Laura into the room.
Lyn says, “Laura sat on the bed, and we chatted about
how we could give a visual voice to my symptoms, and the
idea blew up into this campaign.”
www.ms.org.au
Dizziness, as
photographed by
Louis Petruccelli,
inspired by Lyn’s
dizziness and
New York.
Excited by the possibilities, Laura and her creative partner
Rohan Cooke pitched it to Michael Knox, Grey Australia’s
Creative Director. He put his weight behind it, and with the
blessing of Luke Waldren, the CEO of Grey Australia, the
agency developed the concept till it had grown into the
major campaign that was launched in late March and will
carry through to include the MS Awareness Month of May.
“The agency saw it as a big creative opportunity to tell
an important story,” Laura explains. “It’s been rewarding to
collaborate with Dad and other photographers to visualise
the invisible. It’s hard for people who have MS to articulate
their symptoms, so it’s exciting to find unique ways to help
them do so for the first time.”
Capture the invisible!
Anyone with a camera can help capture and explain an
invisible symptom using the ‘Seeing MS’ app. Grey Australia
has developed an app so you can download filters based on
the nine symptoms in order to show both how the symptoms
feel and how they affect people living with MS.
Once you’re happy with your photo, you can share it
with friends and family via your social media or post it on the
Seeing MS website, for everyone to see. About 80 images
will be chosen for inclusion in the exhibition of the photos that
the professional photographers have created.
Download the app from www.SeeingMS.com
Increasing understanding
The Seeing MS campaign grew from the idea that it’s
hard for people to understand symptoms they can’t
see. To change that, nine top photographers have been
matched with nine people with MS who live with one of
nine ‘invisible’ symptoms. The symptoms are dizziness,
brain fog, feelings of hot or cold, spasticity, lack of
balance, fatigue, pain, numbness and blurred vision.
The photographers have created an image to interpret a
specific symptom. For example, Louis Petruccelli worked
with his wife Lyn to illustrate dizziness, and internationally
acclaimed photographer Matt Hoyle flew out from New
York to create an image to express the spasticity that
comedian and author Tim Ferguson lives with. The
campaign is lucky to have secured Matt because he has
photographed Hollywood stars such as Steve Martin, Tina
Fey, Drew Barrymore, Adam Sandler and Ben Stiller.
The Grey Australia team is making nine minidocumentaries based on the interaction between each
photographer and their subject, and will share them via
social media. There will also be an exhibition of the photos
and a media campaign in which the images will be used,
and there’s talk of a coffee-table book.
Funds raised from the Seeing MS campaign will go
towards paying for services that the MS organisation
provides for people who are living with the disease. To
get involved, go to www.SeeingMS.com or take part in the
MS Walk and Fun Run and encourage others to join you.
www.ms.org.au
Run for fun on June 1
The MS Walk and Fun Runs are being held in Melbourne,
Sydney and Canberra on Sunday, 1 June in order to raise
funds for people living with MS.
One of the brilliant aspects of the MS Walk and Fun Run is
its accessibility for people of any age, ability and fitness level,
which means that people who have MS can participate. The
courses vary in each city but generally range from an easy
5-kilometre walk to a more challenging run that can be up to
10 kilometres long.
If you’ve been inspired by the Seeing MS campaign to get
involved, you can join in the fun in the following ways:
• Enterbystartingorjoininganexistingteam.Thewalk
and run courses will be suited to people of any ability.
Alternatively, support a team online.
• Ifyou’reunabletowalkorrunthecourse,considerasking
a family member, friend or colleague to do so on your
behalf. You can then offer to set up the team online, rally
support and help raise funds.
• Thinkaboutbecomingavolunteerfortheday–you’re
sure to have a lot of fun.
The MS Walk and Fun Run is on Sunday, 1 June 2014.
Go to www.mswalk.org.au
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MS Events
INFORMATION SESSIONS
NSW and the ACT
Learn about MS
Suitable for people who’ve recently been diagnosed with MS,
as well as for their family members and friends. Meet other
people who have MS, and learn about our services.
Date and time TBC Lidcombe
Get Active
Obtain advice about how you can increase your fitness level
and build your strength.
Date and time TBC Lidcombe
NDIS Readiness Conversations
To assist people to start thinking about their eligibility for
NDIS assistance when it begins in the ACT on 1 July,
conversation forums will be held at Gloria McKerrow House,
117 Denison Street, Deakin.
8 April, 5.45pm for a 6pm start
9 April, 10.15am for a 10.30am start
Light meals will be provided. For bookings, email actenquiries@
msaustralia.org.au or call MS Connect on 1800 042 138.
Meet Mi Weekes
Our new Education Coordinator for
NSW and the ACT, Maria ‘Mi’ Weekes,
joined our team in February, and is
based at Lidcombe. Mi has a broad
background in health and education,
having worked as a registered nurse
and workplace trainer for many years.
“I’m looking forward to announcing
a timetable of activities,” Mi says.
“One of my first challenges is to
organise a wellness event in
Maitland, in the Hunter Valley,
and I’ll be able to let people know
the details of that event soon.”
For more information about the
wellness event, call 1800 042 138.
INFORMATION SESSIONS
VICTORIA
For bookings or more information, email
educationvic@msaustralia.org.au or call 1800 042 138.
Some of these sessions are hosted by the local
MS Peer Support Group.
Learn about MS
Suitable for people who are newly diagnosed as well as for people
who want to meet other people and learn more about MS and our
services. Hear from a visiting neurologist, and use the opportunity
to ask your questions.
10 May, 10.30am – 12.30pm Footscray, with Dr Martin Short
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Live Well with MS
Explore the requirements for living well with a chronic illness,
including medical management, exercise, nutrition, stress
management and other lifestyle subjects.
23 April, 6pm – 8pm Footscray
Working with MS
Explore your rights and responsibilities at work, as well as
superannuation, insurance and financial matters.
7 May, 6pm – 8.30pm Blackburn
Managing Fatigue and Coping with the Heat
An overview of MS fatigue and how to manage that
invisible symptom. Managing heat intolerance will also
be part of the discussion.
25 June, 10am – 12 noon Blackburn
Sleep Well
Explore the reasons that people with MS have difficulty sleeping,
and discuss some strategies for improving your sleep.
7 April, 10am – 12 noon Blackburn
14 April, 10am – 12 noon Benalla
20 May, 6pm – 8pm Footscray
26 May, 10.30am – 12 noon Myrtleford
12 June, 6pm – 8pm Blackburn
Medication Update
The new and emerging medications will be discussed by
MS nurses from our organisation.
6 May, 11am – 10am Swan Hill
28 May, 1.30pm – 3pm Yarra Ranges
24 June, 10am – 12 noon Stawell
Conversation with Centrelink
Join one of Centrelink’s Financial Information Service officers
to discuss pensions and entitlements.
28 April, 10.30am – 12.30pm Myrtleford
13 May, 12.30pm – 2pm Mornington
A session for examining Special Disability Trusts
9 April, 1pm – 3pm Blackburn
Bladder and Bowel Changes in MS
Learn about bladder and bowel problems: the causes,
assessment and treatment options.
15 April, 10.30am – 12 noon Mornington
Get Active with MS
Led by our physiotherapists, this session will include advice
about ways in which you can be more physically active.
18 June, 10am – 12 noon Footscray
NDIS Update
Be informed and stay up to date about the progress of the
National Disability Insurance Scheme.
15 April, 10.30am – 12 noon Shepparton
15 April, 1pm – 2.30pm Shepparton
10 June, 12.30pm – 2pm Mornington
Be the CEO of Your Life with MS
Psychologist Dr Sally Shaw will talk about being in control when
you have a chronic illness and what you can do to live well.
1 May, 11am – 12.30pm Blackburn (women only)
4 June, 1pm – 3pm Blackburn (all welcome)
www.ms.org.au
Thinkstock/NADOFOTOS/Image Source White
Registration is essential, because the only time that
programs will run is if minimum numbers are achieved.
For bookings or more information, please email
educationnsw@msaustralia.org.au or call 1800 042 138.
Thinkstock/NADOFOTOS/Image Source White
Thinking and Memory
Neurologist Dr Maggie Ambrose will explain the changes that
can occur and some strategies for better managing them.
7 May, 1pm – 3pm Blackburn
MS Stretch and Strength
Monday to Friday (individual programs)
The gym at the Studdy MS Centre, Lidcombe,
Cost: $5 per session
Call Tracy Martinuz on (02) 9646 0692.
All Regions
Eating Well
A local dietician will speak about how eating well can
be an aid to managing some of the symptoms of MS.
12 May, 10am – 12.30pm Benalla
25 August, 10.30am – 12.30pm Myrtleford
TELECONFERENCES
Taking Control and Planning Ahead
Learn more about how to maintain control of decisions by
using powers of attorney, guardianship and administration.
3 June, 3.30pm – 5pm Bendigo
Managing Fatigue
Learn how to manage MS-related fatigue, in this
two-part teleconference series.
13 and 27 May, 10.30am – 12 noon
Other Events
Bladder and Bowel Changes in MS
Learn about bladder and bowel problems: causes,
assessment and treatment options.
6 May, 7pm – 8.30pm
2 July, 7pm – 8.30pm
MS Family Camp 4–6 April Bacchus Marsh
Aimed at families that have children who are primary-school age,
the weekend away is for both fun and learning. To register your
interest, call MS Connect on 1800 042 138.
‘Caring for Carers’ Day 12 April Lidcombe
You’re invited to attend this wellness day if you’re a family
member or friend of a person who has MS, so come along
and seize the opportunity to meet other carers. To register your
interest, call MS Connect on 1800 042 138.
PHYSICAL-ACTIVITY GROUPS
NSW and the ACT
Yoga in Canberra
Wednesdays, 5.45pm – 7.15pm
During school term
Cost: $17 per session. Call Ruth on 0401 288 921.
Massage Therapy at Gloria McKerrow House
Tuesdays and Wednesdays
Phone Glenda on 0407 918 500.
Thursdays and Fridays
Phone Isi on 0431 100 265.
The therapist will let you know the cost.
MS Exercise Classes
Mondays Call Tracy Martinuz on (02) 9646 0692.
10.30am East Gosford: gentle exercise for balance,
strength and flexibility
12.30pm Tuggerah: gentle exercise for balance,
strength and flexibility
Wednesdays, 12 noon 6X Fitness Studio,
171 Maroubra Road, Maroubra;
call Shaun Hockley on (02) 8084 0880 for the details.
Fridays Cost: $8 per session; call Tracy Martinuz
on (02) 9646 0692.
10am Chatswood: gentle exercise for balance,
strength and flexibility
11am Chatswood: upper-limb exercise; suitable for
people who use a wheelchair
Iyengar Yoga for MS
Cost: $10 per session; call Tracy Martinuz on (02) 9646 0692.
Tuesdays 10.30am Petersham
Wednesdays 10am Lidcombe and 11am Lidcombe
www.ms.org.au
Available to clients and their family
members; throughout all regions. To
register, please call 1800 042 138.
Working with MS
(NSW and ACT only)
Explore your rights and responsibilities at work, as well as
superannuation, insurance and financial matters.
17 June, 7pm – 8.30pm
Sleep Well
Learn more about how MS can have an impact on your sleep,
but more importantly, what you can do about the impact.
21 May, 10.30am – 12 noon
VIEW PROGRAMS
Recordings of some education programs are now
available via our MS website: www.mssociety.org.au
Look under ‘Education Programs’.
MS 24 Hour
Mega Swim
The Mega Swim, Squash and Racquetball are fun team
events for swimmers and players of all ages and abilities.
Teams of up to 15 people swim or play in relay style for
24 hours. Each team member has an online fundraising
page. Many teams host fundraising activities and seek
sponsorship from family members, friends and colleagues.
Funds raised are used to support our Go for Gold
Scholarships and Financial Assistance Programs as well
as to provide services that directly benefit people who are
living with MS.
Go to the website megaswim.com to register and find
an event near you, and follow us on Facebook and Twitter to
keep up to date with the latest news!
Melbourne 3–4 May Mega Swim, Squash
and Racquetball
Canberra 3–4 May Mega Swim
Sydney 3–4 May Mega Swim
Casey 5–6 July Mega Swim
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A strong Hart
C
AR
ER
S
FAMILY & CARERS
Imagine that your 21-year-old son is
diagnosed with MS. Now imagine that
within six years, your husband is also
diagnosed. Meet Wendy Hart.
To guide herself through the difficult times, Wendy Hart has
used the saying “It’s not what life does to you; it’s what you do
with the life you’ve been given.” Wendy cares for her husband
Ted, and they live in Braidwood, NSW. Their son Jason, 42,
has been living at Braidwood Nursing Home since 2007. “You
take these things on the chin,” Wendy says. “I’m grateful the
nursing home is close so we can visit easily.”
Jason is the youngest of Wendy and Ted’s three children,
and he’d kept falling over while working as a gardener in
Camden, near Sydney. “After he was diagnosed, he
went downhill fast. It was a horrendous ride.” Wendy
and Ted encouraged Jason to move back to Braidwood,
and set him up in a flat. “We wanted him to have memories
of living independently.”
Because Ted had other health problems, Wendy had
to work full time. “Fortunately, I had an understanding
boss. There were times I couldn’t get help for Jason, so
I’d get him out of bed, shower him and go to work, and
then go back to feed him lunch and put him back to bed
for his afternoon sleep.”
When Ted was diagnosed, in 2003, Wendy was relieved
his MS wasn’t as aggressive as Jason’s. “Jason can use
only one of his arms, and just a little bit. Ted uses a walker
inside and a scooter outside.”
Over the two decades since Jason was diagnosed, Wendy
has been learning to take care of herself in order to care for
the two men she loves. “Just because your life’s changed,
you don’t have to give up living,” she advises. She retired from
work three years ago and has been continuing to look after
her own wellbeing. Here’s how she does it:
• “I take a 30-minute walk once a day. You clear your head,
and the world doesn’t seem so bad after all.”
• “Each week, I go to choir, and I attend a quilting group.
My quilting friends are my support. I talk to them. I also do
tai chi and line dancing, and I’m active in my local church.”
• “Once a month, I have a massage. It’s my relaxation,
and I always sleep well that night.”
Wendy and Ted Hart.
• “I take two breaks a year to ensure I get the rest I need.
The longer one is 10 days at Batemans Bay, and
when I’m there, I do absolutely nothing but read,
walk, go to the movies and nap after lunch.”
Wendy is deeply grateful for the support she gets
from the Braidwood community, and says that
Maria Simos, a Community Support Worker with
our MS organisation, has been a huge help. “I’ve been
able to offload my problems on to Maria. She’s a good
sounding board, and she lets me know about the support
and services that are available. Carers don’t have time to
find out these things for themselves.” ■
Fight for help
Wendy Hart has learnt from hard experience that carers
need to fight for entitlements. “Once upon a time, I
assumed that if you wanted help, you just had to ask for
it,” she says. “By the end of the day, most carers are too
exhausted to write to their local member of parliament –
but that’s what you have to do.”
To her surprise, Wendy has become an advocate for
carers’ rights. “Carers do a magnificent job,” she asserts.
“We save the government a huge amount of money. I
urge carers not to be frightened to ask for help. You’ll
discover blocks, but you need to keep on pushing.”
Events for carers
In Victoria, we have partnered with BrainLink to offer
events for carers.
So far, the events have included an afternoon of music
at the Frankston Arts Centre; a walk in the Royal Botanic
Gardens, Cranbourne, and a movie at Southland Cinema.
On April 11, another afternoon of music will be held at the
Frankston Arts Centre. It includes light refreshments before the
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performance. There is also an overnight retreat planned
for Sorrento in May.
Meanwhile, in NSW, a wellness day for carers, entitled
Caring for Carers will be held at Lidcombe on 12 April. Open
to friends and family members of people who have MS, it will
give carers the chance to meet other carers.
For more information, call MS Connect on 1800 042 138. ■
www.ms.org.au
MS COMMUNITY
Community support
We’d like to thank the many people who take
the time to raise funds in order to support people
who are living with MS. Here’s how some have
rallied together to help make a difference.
Marathon effort
From left: Philip
Steel, principal
of Bombala High
School; Denis
Reid; Brett Burton;
Hunter Reid;
Corey Morrison.
At the age of 65, Denis Reid completed a 90-kilometre run
from Eden to Bombala, in NSW, to raise more than $6,000
for people who have MS.
Denis had many people join him during his journey, and
they included his grandchildren, local high-school students
and the members of a police escort. The most difficult
section of the run was Big Jack Mountain, but Denis’s
grandkids kept him going once he was there with them. He
made it to Cathcart on the Sunday afternoon, rested there
for a while and then took off again on the Monday morning.
Brett Burton and Corey Morrison from Bombala High
School ran to Bombala with him, and when the three hit the
main street, they were joined by other local kids, including
Denis’s grandson Hunter Reid.
“People keep saying it’s a great achievement, but I
couldn’t have done it without the support of my crew,
my children and grandchildren, and Bombala High
School,” Denis says.
Thanks, Denis, for your ongoing efforts to raise
money for people who have MS. ■
Roll of Honour
Six students from St Cecilia’s Catholic Primary
School recently took part in a project called
Little Feet, Big Footprints. Students who became
involved in the project came to understand various
issues that arise throughout the world, and Gretel,
Brianna, Kasey, Ben, Emilie and James chose to learn
about MS and to support our MS organisation.
The six participants made cupcakes, sold them and
other pieces of MS merchandise, and raised a total of
$451. Thanks, St Cecilia’s – we think you’re pretty special!
If you’d like to find out how easy it is to hold a
community fundraising event and raise funds to help
other people, please contact your local Community
Fundraising Manager. ■
Did you know?
You can go shopping to support people who are living
with MS. Ritchies Supa IGA is celebrating 20 years of
supporting the community via the stores’ Community
Benefit Card program. Since the program’s inception,
our MS organisation has received a total of $148,344.
Other ways you can help are by purchasing:
• a‘BettyCuthbertrose’fromTreloarRosesPtyLtd,
phone (03) 5529 2367
• coffeeviatheLittleGcoffeewebsite,
http://littlegcoffee.com.au/
• hampersandcardsfromCharityGreetingCards,
via the website www.charityhampers.com.au
• goodsviatheConnect4morewebsite,
http://connect4more.com.au/
When you make your purchase, these
companies will donate to our MS organisation.
For more information, go to
www.mssociety.org.au/support-gifts.asp
We would like to thank the following community members who
helped raise funds for MS over the past three months:
● Box HQ Gym – 12 Hour Endurance Day
● Terry Ervin and Rosnay Golf Club
– Pro Am Golf Day
● Rebel Sport Run4Fun − Alison Facer and
Team Vision, Karina Bray and Paul White
● Hilary Britton and committee
– Melbourne Cup lunch
● NSN–Nokia – Fun Run donation
● Sara Gawthorn – donation
● Geoff Allen – donation
● Paul Swan – Mudgee Campdraft
● Centro – gift wrapping by MS volunteers
● Maxine Beale – Christmas lights
www.ms.org.au
St Cecilia’s school project
● Alison Facer – Train the Trainer
● New England Girls School, Armidale
– donation
● Denis Reid – Eden to Bombala marathon
● Nina Stillone – in lieu of a gift
● Wingecarribee Shire Council – pool launch
● Adrian Petruccelli – Dry October
● Lucy and Ian Edmund – in lieu of a gift
● City to the Sea – Kylie Ayres,
Samantha Clifford, Anneke Glaubitz,
Monique Brasher and Ben Howl
● Adrian Giorgianni (Reece Plumbing)
– sausage sizzle
● St Cecilia’s Catholic Primary School
– Little Feet, Big Footprints
● Melbourne Marathon – Tanya Taylor,
Harriet Smith, Amy O’Hare, Paul Johnson,
John Docanto and Marcus Tame
● Jason Nikakis – Health and
Wellbeing Challenge
● MFB RC112 – Eureka stair climb
● Anna Blair – Frankston U3A Choir
● Melbourne Ladies College – Home
Group 7G fundraising
● Vivienne Gallagher – Accessorise U
● Teresa Savage – Phoenix Trading
autumn 2014
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23
MS COMMUNITY
Volunteers
in action
How our dedicated volunteers are helping to
make a difference for people living with MS
Fun at fundraising events
Our inspiring and hard-working volunteers were out in
force again to help run the three MS Colour Dash events
on Australia Day and the MS Melbourne Cycle on
Sunday, 23 February.
We held the first MS Colour Dash in Sydney last year,
and this year, we extended the event to Melbourne and
Canberra. Each city hosted the five-kilometre fun event
with the help of volunteers.
In Melbourne, we staged the colour dash at
Docklands, and 150 volunteers took part to make sure
the 2,000 entrants had a great day. In Canberra, more
than 100 volunteers guided the 450 participants
around Black Mountain Peninsula and showered them
with coloured powder at the various stations.
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In Sydney, we again used stunning Darling Harbour, and
170 volunteers were there to help the 1,850 participants.
The fun continued throughout the morning, with music and
activities to celebrate Australia Day.
Then, for the MS Melbourne Cycle, held on Sunday,
23 February, 230 volunteers turned up at Princes Park, in
the suburb of Carlton, or were stationed along the course.
The cyclists had the opportunity to ride through the CBD and
cross the West Gate Bridge before returning to Princes Park.
The volunteers displayed impressive energy and
commitment, providing information, marshalling cyclists at the
start and finish chutes, selling merchandise, and undertaking
dozens of tasks – all those activities so the cyclists could
ride one of two ‘course’ lengths: the 30-kilometre ride,
which was perfect for families, or the 50-kilometre ride, which
more-experienced cyclists would find more challenging.
The cyclists’ friends and family members gathered
at Princes Park to join in the fun, which included live
entertainment and food stalls.
We thank everyone who was involved in any of these four
events – as usual, we couldn’t have done it all without you! ■
Buy the book
This year’s Entertainment Book will be available soon,
so be sure to order your copy, because $13 from each
book’s sale proceeds will be used to fund support
services for people living with MS. Go to
www.entertainmentbook.com.au/orderbooks/180w224
to order your copy.
The new books, as well as the brand-new Entertainment
Digital Memberships, will be launched in April. You can also
purchase the books at the reception desk of our premises
in Blackburn, Melbourne or Lidcombe, Sydney; at our
MS Community Shops; or via the www.ms.org.au website.
Bendigo and Adelaide Bank Limited ABN 11 068 049 178 AFSL 237879. G4U20
(206206_v1) (10/02/2014)
Bendigo and Adelaide Bank Limited ABN 11 068 049 178 AFSL 237879. G4U20
(206206_v1) (10/02/2014)
Molonglo Community Bank® Group
Molonglo Community Bank® Group
24
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autumn 2014
www.ms.org.au
Volunteer opportunities
Three amigos
We are always looking for
more volunteers, and here
are some opportunities we’re
aiming to fill right now:
Dean Wallen-Dobell and Stephen
Thomas are volunteers who enhance
the life of Steven Nikolovski, a
Melbourne person who lives with MS.
Dean takes Steven shopping and to
the movies, and Stephen takes him
to the gym twice a week and
to football games.
However, the two men who
make such a difference to Steven’s
life hadn’t met before they found
themselves together while helping
out with recent renovations at our
Watsonia residential and respite
accommodation. While they were
working, they discovered they had
a friend in common.
Dean, who’s been volunteering
for two years, began as a barbecue
assistant for the MS Melbourne
Cycle. He went on to help with
mail-outs at our administration centre
and then preparing gift bags for MS
Mega Swim participants, and he’s
VICTORIA
● Volunteers are required
throughout Melbourne and
other areas to visit people
who have MS.
● Volunteers are required
to support the MS shops
located in Fairfield,
Daylesford, Malvern and
Geelong and at our new
shop in Hampton.
NSW–ACT
● Volunteers are needed
to support the MS
shop in Baulkham Hills,
north-western Sydney.
● We need volunteers who
are interested in providing
social support or in driving
people to appointments. The
volunteers are required in
the northern and southern
suburbs of Canberra and
in Batemans Bay, on the
NSW south coast.
● In the Carlingford area of
north-western Sydney, a
volunteer is needed for home
visits and meal preparation.
● Volunteers are needed
to help run yoga classes at
the Studdy MS Centre
in Lidcombe.
● In regional areas of NSW,
volunteers are required
to help people complete
various tasks.
If you are interested in any
of these opportunities or
any other volunteer role
throughout our regions,
please call MS Connect
on 1800 042 138.
From left, Stephen
Thomas, Steven
Nikolovski and
Dean Wallen-Dobell.
now keeping Steven company. “But
that’s no longer volunteering because
Steven’s become a friend,” he says.
Meanwhile, Stephen Thomas
has been taking Steven to the gym
for more than a year. “Steven’s so
inspiring,” he says. “His determination
to keep fit makes all the girls working
out at the gym pay attention!”
Stephen is a stay-at-home dad
who wanted to teach his son the
importance of giving your time freely,
which is one of the reasons the family
takes Steven to the football.
We want to thank Dean and
Stephen for adding so much to
Steven’s enjoyment of life. ■
Pete helps out
In 2010, when Canberra resident Pete had to give up his career in building and
construction because of a serious injury, he wondered how he’d fill his days.
Pete has extensive experience in the building industry and found it difficult to
adjust to a life without the satisfaction that comes from having a job. “It was a dark
point,” he says. “In mid-2013, when I was looking for a role as a volunteer, I read
that the MS organisation needed help in improving Gloria McKerrow House.”
Although he’s unable to engage in physical work due to his injury, Pete
soon discovered that his extensive network of contacts was useful. “I jumped
on the phone, ‘called in’ favours, and was able to save money for the MS
organisation by getting my contacts to donate hardware items or negotiating
better deals for equipment.”
Pete soon became such a fixture at Gloria McKerrow House that he was given
the honorary title Volunteer Building and Facilities Coordinator. “I love what I’m doing;
it’s been of great help emotionally. I use my skills to do some of the light ‘handyman’
work, such as repairs, but I mainly facilitate, provide mentoring and manage other
people to undertake projects such as building repairs and garden maintenance. My
next big project will be to organise a pergola – I want people who have MS to be
able to come here and enjoy the grounds.”
According to Ann Lehmann, MS Practice Leader, Rural ACT, with our MS
organisation, “Pete’s a wonderful asset. Our organisation has really reaped benefits
because of his contacts among tradesmen and suppliers. He’s all about saving
money so we can pour more of our resources into providing services for people
who have MS. Both our staff members and visitors to our centre have commented
on how much more attractive the building and grounds are now – thanks, Pete!” ■
Gift wrapping generosity
More than 750 people demonstrated the true spirit of Christmas when they gave up their time to wrap gifts at one of
the 20 Federation Centres located throughout NSW and Victoria. They not only fundraised for our MS organisation;
they increased awareness of the disease. Thank you for your generosity during that hectic pre-Christmas period.
www.ms.org.au
autumn 2014
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25
MS COMMUNITY
Award nominee
One of our much valued MS Mentor Peer Support
Volunteers, Sally Smith, was recently shortlisted for
the inaugural Brenda Gabe Leadership Award.
Brenda was a person who lived with MS, who was
an inspiring leader and advocate in the disability sector,
and was well known to many Victorians who were
affected by MS.
The purpose of the award in honour of her memory is
to recognise and reward women who have a disability and
who’ve made a significant contribution to improving the
status of Victorian women who have a disability.
Although Sally didn’t win, we want to congratulate
her for being nominated. She did a 10-year stint as an
MS Ambassador, and she works tirelessly to help other
people even when she’s facing her own life challenges
in relation to MS. For example, for the past eight years,
she’s been facilitating the Peer Support Group entitled
Women in the East, and for the past four years, she’s
been spending a day a week volunteering in our peersupport program. “Being nominated was a humbling
experience,” she says, “because there are so many
inspiring women who have a disability who do so much.”
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From left: Christine
Braby, Sally Smith
and Gayle Homann,
our MS Peer
Support Coordinator.
Sally was diagnosed with MS in 1999. “I used to
be a nurse, and if I can help someone, I feel I’ve
done a good thing.” She says that because of her
voluntary role, she’s often the first person to speak to
someone who’s been newly diagnosed. “I never declare
I have MS unless it comes up naturally, and when it
does, I can feel that a weight’s been lifted off the person’s
shoulders, because I’m a person who has MS and I
understand what’s happening for them.” ■
Great feedback
Whenever a person who has MS completes the
telephone MS Peer Support Program, he or she is
sent a feedback form to complete. Although we’re
grateful for all comments we receive back, we’re
thrilled when we learn that peer support has been a
positive experience for the person. Take the case of
Caroline, 38, who was diagnosed with MS last year
while going through a difficult divorce. As a single
mother who works full time, Caroline contacted
members of the peer-support program to help herself
adjust to her new circumstances. Here’s what she said:
“The Peer Support Volunteer helped me find
direction and build my confidence in my wellbeing.
She also encouraged me to be proactive in relation
to my mental and physical health. Although it’s still a
work in progress, I feel empowered in terms of having
some idea as to where and who I can contact for
support and services. The most powerful and helpful
aspect, however, was that I felt I’m not alone and
isolated with my MS. It was very powerful to be able
to speak to someone who has a true understanding of
life with MS and has information available for assisting,
supporting, and giving direction. Thank you – I don’t
have the words to express my gratitude.” ■
www.ms.org.au
C
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Support
group profile
The members of the Tweed
MS Support Group meet at
the Cudgen Headland Surf
Club, overlooking beautiful
Kingscliff Beach, in northern
NSW. Robyn McInerney
explains why she attends.
When did you join the group?
I was one of the first members to
join when the group was started,
in May 2012. I was 36 when I was
diagnosed with MS, in 2000. My
symptoms included numbness and
lack of coordination in my hands.
That feeling also affected my legs
and feet. I have Relapsing–remitting
MS, but you wouldn’t see any signs
of it if you met me. I’ve been married
for almost 25 years, and I own
and operate a florist shop. I’m also
studying for a Bachelor of Applied
Social Science in Psychology, with
the aim of becoming a counsellor.
Why did you attend a peer
support group?
I like to share information and to learn
from other people. Before I joined,
I hadn’t met many people who had
MS, and I was wary of what I’d find
– but it’s been a positive experience.
When people are going through hard
Robyn McInerney
times, it’s important to know we
can help each other.
How have you found the group
to be helpful?
I’ve learnt a lot about services,
research and new treatments,
but the best part is being with
like-minded people; we each have
different experiences, but we share
the bond of having to deal with an
unpredictable disease.
When does the group meet?
On the fourth Tuesday of each
month, between 11am and 1pm.
We can have as many as 16
people attend, or it could be
just four. Sometimes, we might
just have a coffee and a chat, and
enjoy the view. At other times, the
meetings are more formal, especially
if someone needs help. On occasion,
I’ve facilitated meditation and
relaxation sessions, and we hold a
Christmas lunch and a ‘Christmas
in July’. In 2014, we’re planning
to have guest speakers on
a quarterly basis; hold a wellness
day; and conduct an MS-awareness
session during May, which is MS
Awareness Month.
Do you have any advice for
people who are considering
joining a peer support group?
Go with an open mind and
an open heart, and accept
what’s there. I enjoy it because
I want to both support other
people and be supported myself.
I always leave the group feeling
inspired, uplifted and informed. ■
For more information about
the Peer Support Program
or to find a support group
near you, please call
MS Connect on 1800 042 138.
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MS COMMUNITY
MS Ambassador profile
Since she was diagnosed with MS, Beth Wurcker has been determined to demonstrate
that you can live happily and become stronger despite having a chronic health condition.
illness such as MS. Although I wouldn’t choose to have
MS, I truly think I’m a better person because of it. It’s been
a challenge for me, so I’m physically and emotionally
stronger. Ironically, I’m much healthier than I would’ve been,
because I take really good care of myself. I’m also more
empathic and more aware of the importance of focusing on
what people can do rather than on what they can’t. I work
full time in a job in which I support older people and people
who have a disability, and it’s very fulfilling. Also, I have very
supportive friends, family members and colleagues.
Tell us about being an MS Ambassador.
I so appreciated the support of the MS organisation in
Canberra that I wanted to give back. I can remember the
feelings I had of despair and hopelessness, so I wanted to
support people who are newly diagnosed and to tell them
there’s life after diagnosis.
Name: Beth Wurcker
Age: 53
Occupation: Community Services Manager, Red Cross,
for the ACT and south-eastern NSW
Lives: Canberra
Diagnosed with MS: 2001
Has been an MS Ambassador: Since 2007
Tell us a bit about your MS journey.
I woke one morning feeling completely numb down the right
side of my body. I had two boys, ages nine and five; I was
working; I was studying at university; and I’d always had
excellent health, so I more or less ignored the numbness.
When it didn’t go away, I began the journey towards eventual
diagnosis: doctor, cat scan, neurologist, MRI, and then that
awful moment you’re told you have an incurable disease.
What happened next?
I had a couple of relapses during the early years, but I’ve
been reasonably stable. I walk with a bit of a limp, and my
biggest challenges are spasticity and heat intolerance. I have
evaporative cooling at home, and I use miniature fans and a
gel-filled cooling neck scarf. I’ve been on immunotherapy for
about eight years, and I follow Dr George Jelinek’s approach.
How is your life now?
Wonderful! My philosophy is to demonstrate you can have a
happy, productive life even though you’re living with a chronic
What are some of the things you’ve done in your
role as an MS Ambassador?
I speak at sessions for people who are newly diagnosed,
and I talk to the members of community clubs and at
events such the MS Walk and Fun Run.
What’s the message you most like to deliver?
It’s our responsibility to learn as much as possible
about MS and to keep up to date with all the latest
information. Although we can’t control the disease, we
can control quite a few of the aspects of it, such as
medication; diet; and, most importantly, attitude: see
yourself as a person who’s just like anyone else. MS is
a part of who you are, but it’s not who you are. ■
My philosophy is to
demonstrate you can have a
happy, productive life even
though you’re living with a
chronic illness such as MS.
Would you like an MS Ambassador to speak at your next corporate, school or community event?
Call the MS Ambassador Program team via MS Connect on 1800 042 138.
28
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autumn 2014
www.ms.org.au
High achievers
“My first big break came when I was five years old. It’s taken
me more than 70 years to realise that – you see, at five, I first
learnt to read. It’s that simple, and it’s that profound.”
– Sean Connery, an actor who played James Bond
Last year, in picking up their books to participate in the iconic
MS Readathon, thousands of students and adults helped the
23,000 Australians who are living with multiple sclerosis.
More than 300 schools throughout the ACT, NSW,
Queensland and Victoria took part and motivated their
students to sign up and raise funds. We’d like to thank
everyone who got involved, because we otherwise wouldn’t
have a program or be able to provide the essential support
services people with MS so desperately need. We’d especially
like to congratulate the top fundraisers.
Sydney Grammar School Edgecliff Preparatory School yet
again swept the board of awards. Sixty-four students took
part and raised a staggering $12,084. Congratulations to the
Students at Sydney Grammar
School Edgecliff Preparatory School
celebrate with their teacher Martin
Rossleigh and our MS Ambassador
Stephen Papadopoulos.
students, and heartfelt thanks to Martin Rossleigh, the teacher
who coordinates the school’s MS Readathon, for the amazing
support we receive from him each year.
Meanwhile, in the ACT, Burgmann Anglican School raised
$3,109; in Victoria, Point Cook College’s Prep–P9 students
raised $4,918; and in Corinda, NSW, St Joseph’s Primary
School raised $3,700. These three schools received the
State Highest Fundraiser award, and together, these top
fundraising schools raised more than $23,000.
Some individual fundraisers also reached for the stars.
Six-year-old Makaira Muscat took part in her first MS
Readathon, in support of her mum Rebecca, who has
MS. Makaira raised $3,345 and took out the Individual
Fundraiser top spot. Other fundraising stars included Mitchell
Kerr, from Queensland, who raised $1,737; Cheryl Hajje, from
NSW, who raised $2,610; and Kathryn Spedding, from the
ACT, who raised an amazing $3,190.
In August, in order to mark the end of Book Week, we held
our second 60 Minutes for MS one-day event. More than 100
schools, kindergartens, pre-schools and libraries took part,
and lots of fun activities were held throughout the ACT, NSW
and Victoria. A big thankyou to all the teachers and carers
who supported this initiative and made the day so successful.
As a result of all the efforts, the funds raised from the 2013
MS Readathon were pushed to more than $270,000.
This year, we’ll be celebrating the MS Readathon’s
35th year, and we’re looking forward to sharing the
exciting details with you soon. We’d like to sincerely thank
every participant in the 2013 program for making a huge
difference for so many people.
For more information, visit www.msreadathon.org.au ■
Generosity acknowledged
In leaving a bequest to our
organisation, you’ll ensure that the
future for people who are living with
MS remains bright and prosperous.
Many people have already chosen to leave a
legacy, via their Will, to help people who are
living with MS, and in November, we honoured
them as being a special group.
We invited benefactors throughout the ACT, NSW
and Victoria to attend a morning tea, at which
Robyn Hunter, our CEO, personally thanked them
for their commitment and support. Robyn spoke
about the organisation’s growth over the years,
from its humble beginnings, and shared her vision
for the organisation’s future.
www.ms.org.au
We welcome you to find out more about
how to become a benefactor and/or to order
a free copy of our bequest booklet Your Future
In Your Hands, in which we provide information
about the importance of having an up-to-date
Will and leaving a bequest.
For your copy of the booklet, please call
Donna Bradley-Robinson (Victoria) or
Jacqui Sumner (ACT and NSW) on
Free CallTM 1800 443 867 or email
bequests@msaustralia.org.au
autumn 2014
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29
HEALTH+WELLNESS
Make
peace with
emotions
Being diagnosed with a chronic illness such as MS is one
example of a ‘reality slap’; so is the death of a loved one, a
divorce, loss of employment, an accident or injury, and the
birth of a child who has a disability. For Dr Russ Harris, the
most painful event of his life occurred when his two-year-old
son was diagnosed with autism. How he dealt with that blow
became the basis of his book, and in this edited extract from
it, he suggests a way to deal with emotional pain.
A wave of nausea washes over you. Your eyesight becomes
blurry and foggy, and within a few seconds, it completely
disappears. Your throat is paralysed almost instantly,
preventing you from speaking or swallowing. And over
the next two to three minutes, this paralysis spreads
throughout your body, until you can no longer breathe.
This is how your life would end if you were bitten by the
deadly blue-ringed octopus.
This tiny sea creature provides a good analogy for a painful
emotion; if you hold on to it, chase it away, or try to ignore it,
the results are usually bad. Unfortunately, many of us treat
our emotions as if they are as dangerous as that octopus.
We want to get rid of them or avoid them. And this attitude
absorbs a lot of our energy and drains our vitality. However,
our feelings are not dangerous. If we stay still and observe our
emotions with curiosity, then they cannot hurt us or harm us in
any way. When a painful feeling arises, you don’t have to get
sucked into it; instead, you can be fully present with it. And if
your mind has something unhelpful to say about that prospect
– a protest, a threat, a worry, a judgement or some other form
of resistance – please let it have its say, and carry on reading.
Note the difference
Many people get confused about the differences between
thoughts, feelings, emotions and sensations. On a physical
30
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autumn 2014
level, an emotion includes neurological changes (i.e. involving
the brain and nervous system), cardiovascular changes
(i.e. involving the heart and circulatory system), and
hormonal changes (i.e. involving the ‘chemical messengers’
of the blood). However, while we can measure these
changes on scientific instruments, this is not how we
experience our own emotions.
When we look at our emotions with open, curious attention,
all we will ever encounter are thoughts and sensations. By
‘thoughts’, I mean words and pictures inside our head; by
‘sensations’, I mean what we feel inside our body.
Often emotions give rise to a sense of meaning, but that
‘meaning’ itself is a thought, made of words and pictures.
Urges also often show up as part of a strong emotion; but
pay close attention to any urge, and what you will discover
are sensations in your body, and words and pictures in your
head. The same also holds true for any memories: look at the
memory closely and again you will discover sensations in your
body, and words and pictures in your head.
The question is: can you open up and make room for
whatever you encounter?
When we pay attention to the threatening, unpleasant or
painful stuff inside us – to all those thoughts and feelings we
normally turn away from – and when we are willing to take
a good, honest look at it all, we learn that it’s not as big as it
seems – that we can make room for it. We free ourselves up
for investing time and energy in improving our life rather than
in trying to control the way we feel. So, next time loneliness,
resentment, anxiety, guilt, sadness, regret or fear shows up,
what if you could view it as if it were a prize exhibit in a show?
• NoticeyouremotionTake a slow, deep breath, and focus
your attention on your body. Start at the top of your head,
and scan your body downwards. Notice where, in your
www.ms.org.au
Thinkstock/kutakhAleksandr
We all have to deal with times during
which life deals us a painful blow. In his
book, The Reality Slap, Dr Russ Harris
looks at how you can find fulfilment
when you’re facing a gap between how
life is and how you want it to be.
•
•
•
•
•
body, the feeling is strongest: your forehead, eyes, jaw,
mouth, throat, neck, shoulders, chest, abdomen, pelvis,
buttocks, arms or legs? Once you have located the feeling,
observe it – what it feels like, or how it behaves. Notice
its energy, pulsation or vibration. Is your body tensing up
around it? Are you breathing more rapidly and shallowly?
Is your mind protesting or fretting?
NameyouremotionSilently say to yourself, Here’s fear,
or Here’s anger, or Here’s guilt. Continue to observe the
emotion, as if it is some fascinating sea creature. The big
difference now is that the creature has a name, so you
know what you are dealing with.
BreatheintoyouremotionBreathe slowly and deeply,
and imagine your breath flowing into and around the
emotion. And as your breath does this, it’s as if in some
way you expand — as if a space opens up inside you.
This is the space of awareness. So breathe into the
feeling and give it space. Breathe into any resistance
within your body: the tension, the knots, the contraction.
Breathe into any resistance from your mind: the smoky
haze of No, or Bad, or Go away. And as you release the
breath, also release your thoughts. Let them come and
go like leaves in the breeze.
AllowyouremotionThere is no need to like, want or
approve of the emotion; just allow it to be where it is. Give it
permission to do what it’s already doing, to be as it is.
ExpandyourpresenceThe marine biologist might
concentrate her attention on the octopus, but she can also
broaden her focus, to notice the water around the octopus
and the rocks beneath it. And we can all widen our focus
in a similar way. Continue to notice your feeling, and at the
same time, recognise that it’s only one aspect of the here
and now. Around the feeling is your body, and using that
body, you can see, hear, touch, taste and smell. So, take
a step back, and admire the view. Do not notice only what
you are feeling; notice what you are hearing, seeing and
touching. As you do so, do not try to distract yourself from
the feeling; keep it in your awareness, and at the same
time, connect with the world around you.
NoticewhatyouarefeelingandthinkingNotice
what you are doing and how you are breathing. Take
it all in. Straddle two worlds with your awareness: the
one within you and the one outside you. Illuminate both
with your consciousness. And engage fully in life as it is
in this moment.
Meettheauthor
Dr Russ Harris is a medical practitioner, a psychotherapist
and the bestselling author of The Happiness Trap, which
has been translated into 22 languages. He is also the
author of The Reality Slap. As one of the world’s leading
authorities in relation to Acceptance and Commitment
Therapy (ACT), Dr Harris regularly travels throughout
Australia as well as internationally to train a variety of
health professionals to use this psychological approach
that involves mindfulness.
Whatnext?
You may be asking, “After I expand my awareness and
engage with the world around me, then what do I do?” If
you’re doing something purposeful and life-enhancing, keep
doing it and become fully engaged in it. If you’re not doing
something purposeful and life-enhancing, then stop and
switch to an activity that is more meaningful.
I encourage you to make the effort, at least several
times a day, to take a good, curious look at your feelings.
And if you find this difficult to do, then take baby steps.
No one expects a fire fighter to tackle a towering inferno
without any training. The trainee fire fighter practises on
small, safe fires, lit under carefully controlled conditions.
It is much the same when it comes to mindfulness of our
emotions. Start with those smaller, less challenging feelings:
the impatience, frustration, disappointment and anxiety that
arise as part of everyday living.
Watch your emotions closely and discover their habits.
When do they appear? Which parts of your body do they like
to occupy? Where do you notice the resistance, the tension
and the struggle?
When we’re watching a documentary, we can be thrilled
at the sight of a shark, or a crocodile, or a stingray. These
deadly, vicious creatures can fill us with awe and appreciation.
Our challenge is to view our emotions in much the same way.
For, although our feelings may appear to be dangerous, they
are actually unable to harm us. Watching our feelings mindfully
is no more dangerous than watching a wildlife documentary.
So, take a curious look, whenever you can – it doesn’t have to
be a long look, just a curious one. ■
Thinkstock/kutakhAleksandr
Bookdiscount
Readers of Intouch will receive a 30 per cent
discount on the $29.99 RRP for The Reality Slap,
thanks to the generosity of Exisle Publishing. To access
the discount, go to www.exislepublishing.com.au, and
at the checkout, enter the coupon code ‘MS’.
www.ms.org.au
autumn 2014
intouch
31
HEALTH+WELLNESS
Shaun Hockley
stands behind Simon
Thomas, Peggy Irwin
and Jane Hinton.
Extend
your fitness
Meet the personal trainer who gives
boxing drills to an 85-year-old woman
who has MS, to help her stay mentally
and physically fit.
Simon Thomas is 53 and was diagnosed with MS 16 years
ago, Jane Hinton is 64 and was diagnosed 19 years ago,
and Peggy Irwin is 85 and was diagnosed 20 years ago.
All three never thought they would take up boxing, but
they have come to love it.
Once a week, the trio works out with Shaun Hockley,
a personal trainer who’s based at a gym in the southern
Sydney suburb of Maroubra and who taught them to box
as an unusual way to exercise their mind and body.
Peggy discovered she had MS when she was feeling
pins and needles in her fingers and dragging her left leg.
“About eight months earlier, I’d had optic neuritis, but the
doctors didn’t tell me it was a symptom of MS,” she says.
At the time, Peggy was working as a ward clerk at the Prince
of Wales Hospital, in Randwick, Sydney, and was living
independently in neighbouring Bondi. Today, she’s fortunate
to be living in a granny flat at the home of her daughter and
son-in-law and her three grandchildren.
Although osteoarthritis causes her some problems,
Peggy’s had to use a walker for several years because
she has difficulty balancing. She began training with Shaun
four years ago and was pleased he took her arthritis into
account. “Shaun is so kind, and we have great fun. I’m
the oldest in our group, by a long shot, but they treat me
as though I’m the same age.”
Peggy, Simon and Jane met Shaun in 2011, when he
took over the exercise class that people who had MS,
including the trio, were attending. During that period,
Shaun was undertaking a change of career because he’d
Training tips
It doesn’t matter whether you exercise every day or you’ve
done nothing physical for years; Shaun Hockley believes
there’s always room for improvement.
Shaun is a personal trainer who works with people who
have MS, and his aim is to train their mind as well as their
body. “Obviously I believe it’s best to do some physical
exercise every day,” he says. “It’s essential to keep fit and
remain as active as you can – but you can also start at the
level you’re at and improve from there.”
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autumn 2014
injured his back while working in the construction industry.
“I was starting my own fitness business, and I saw an
advertisement for a personal trainer to work with people
who have MS,” Shaun explains. “I thought it was a voluntary
position, and I applied because I wanted the experience.
When I got the job, I was surprised to discover I’d be paid!”
Simon, who’s been married for 25 years and who became
a father of two after his MS diagnosis, is a big believer in
exercise as being a way to reduce the disease’s impact. “Our
group had been exercising together for a while,” he says.
“From the beginning, Shaun’s been fantastic – he’s able to
address our different abilities and fitness levels, he’s a great
motivator, and he has a terrific sense of humour.”
Benefits of boxing
Although Simon doesn’t use a mobility aid, he has
problems with his left leg, and the MS affects his
balance. “Shaun trains us mentally and physically,”
he says. “Since I’ve been working with him, I’ve had
better balance, more energy and more strength.”
Shaun’s not only a personal trainer; he trains amateur
boxers. “I realised that boxing combinations would result in
improved hand–eye coordination and engagement of the
brain,” he says. A boxing combination is a drill during which
Shaun instructs Simon, Jane and Peggy to deliver punches in
a sequence they must remember and keep repeating. “In the
early days, I gave Peggy basic movements,” he explains, “but
over time, I’ve seen her grow stronger. I’ve also seen Simon
gain more strength in his right arm, which gets fatigued, and
The easiest way to measure your improvement is to
have a routine you extend as your fitness improves; for
example, you might begin by doing five squats a day
every day for a week and then increase the exercise to
doing six squats a day for a week.
When Shaun works with people who have MS, he
usually focuses on improving their balance and hand–eye
coordination and on increasing their strength. Also, he selects
routines for which concentration is required, so that the brain
is also active. Try this exercise, for example: Stand, if you’re
www.ms.org.au
Join a gym
If you find it difficult to get
motivated to exercise, consider
joining a gym or an exercise
class. As you can see from
85-year-old Peggy Irwin’s
experience, age is no barrier. At
a gym, you have the opportunity
to access advice from fitness
trainers, and you can also work
at your own pace, resting when
you need to. If you or a staff
member from your gym would
like information about how to
exercise when you have MS, call
MS Connect on 1800 042 138.
2014 0207 MS Aust Intouch 88 x 252 OL.pdf 1 07/02/2014 12:09:44 PM
Jane’s definitely stronger. I get great satisfaction working with
people who have MS – they’ll do anything I ask them to do, to
the best of their ability, and yet I train able-bodied people who
whinge and complain that it’s all too hard.”
Peggy says she’s found it a challenge to do boxing. “I never
imagined I’d learn to box, but I have to use my arms and
rotate my shoulders when I’m boxing, and I have to keep my
mind going when I’m remembering the combinations.”
Meanwhile, Jane says that although she’s always been
committed to exercising regularly, she never dreamt of
doing boxing. “I did yoga, Pilates and swimming,” she says.
“Also, I live in a flat on the third floor, so taking the stairs each
day keeps me moving but Shaun is a good teacher, and
boxing’s great fun.”
Simon says that before he was diagnosed with MS,
he wasn’t keen on exercise whereas he now believes
that if you have MS, “you’re crazy not to find a personal
trainer or join an exercise class. One of the key elements
of MS is depression, because you keep suffering losses.
First, you lose the future you were planning, and then,
because MS affects your relationships and your career,
you start to lose your quality of life, and that loss hits you
mentally. Shaun helps me stay fit, happy and motivated.”
In turn, when it seemed as though the exercise group
would have to be disbanded due to lack of funds,
Shaun refused to let that scenario happen. “I organised
a fundraiser at the gym and raised $7,000 to keep
it going,” he says. “I want to be able to keep seeing
Simon, Jane and Peggy stay fit. n
C
M
Y
CM
MY
CY
CMY
K
able to, or sit comfortably. Raise your left leg and right
arm and then your right arm and left leg. Keep alternating
your arms and legs for eight repetitions or till you make a
mistake. Then rest, re-group and start again.
“When you find you can do this exercise well, try to
better it,” Shaun advises. “Extending yourself is important.
Increase the number of squats you can do, increase the
number of kilograms you can lift, and increase the number
of brain-activating exercises you include in your exercise
routine, and the stronger and fitter you’ll become.”
www.ms.org.au
autumn 2014
intouch
33
HEALTH+WELLNESS
Easy access
You can store information using the
new eHealth record system.
South Eastern Sydney Local Health District
Multiple Sclerosis Clinic
In helping to address the healthcare needs of people
with Multiple Sclerosis (MS) living in South Eastern
Sydney and Illawarra Local Health Districts, the SESLHD
has opened a MS Clinic at Prince of Wales Hospital (POWH).
The MS Clinic is dedicated to the diagnosis and long-term
care of patients with MS and related disorders, and utilises
the extensive multidisciplinary services available at POWH.
The MS Clinic is run under the direction of A/Prof Arun Krishnan,
Consultant Neurologist, Prince of Wales Hospital who has
a special interest in Multiple Sclerosis and is currently
involved in related research.
Contact details:
Institute of Neurological Sciences
Prince of Wales Hospital
Level 2 High Street Entrance
Randwick NSW 2031
Fax all referrals to A/Prof Arun Krishnan: (02) 9382 2428
For appointments phone:
(02) 9382 2414
All patients are bulk billed.
Low waiting times.
Email: Christine.Cormack@sesiahs.health.nsw.gov.au
https://www.sesiahs.health.nsw.gov.au/MS/
Once a booking is made,
patients will be sent a letter with appointment details.
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autumn 2014
MS is a complex condition requiring ongoing communication
between healthcare providers. Improvements to clinical
management can be made when the correct health
information is available to the right healthcare practitioner.
In 2012, aiming to improve the sharing of health
information, continuity of care and healthcare team
communications, the Federal Government launched the
personally controlled ‘electronic health’ (eHealth) record
system. All Australians can now register for their own eHealth
record. An eHealth record is a secure electronic summary of a
person’s key health information in relation to aspects such as
his or her allergies, medications, existing and previous medical
conditions, immunisations and Medicare data.
The eHealth record also includes a section in which the
person can enter his or her own health notes, including
recording and monitoring of his or her symptoms and his or
her responses to treatments. In the coming months, it will also
be possible to upload the person’s pathology and imaging
reports to his or her eHealth record. Registering for an eHealth
record is free of charge. The potential benefits of having an
eHealth record are as follows:
• Withyourconsent,yourhealthcareproviderswhoare
participating in the national eHealth record system will find
it easier to access your key information, and this aspect
will be especially beneficial whenever you’re travelling or
staying with a family member for an extended period.
• You’llnolongerneedtorelyonyourmemoryinorder
to recall the details of your past medications, treatments
or responses.
• You’llbeabletoreviewtheinformationyourhealthcare
providers contribute, and you’ll find this aspect especially
beneficial if your verbal communication, cognition or
memory is impaired.
• You’llbeabletousethe‘personalcontributions’section
to record fluctuations in your symptoms and your
reactions to your treatments.
• You’llbeabletograntaccesstoyoureHealthrecordto
your carer, and you’ll find this aspect especially beneficial
during any ‘acute relapse’ period.
Whetheryou’remanagingyourMSonadailybasisor
an emergency situation arises, the fact that you and your
healthcare providers and nomimated carers will be able
to access your important health information more easily
will mean you’ll have less stress when engaging with your
healthcareteam.YoucanregisterforaneHealthrecord
online,inpersonataMedicareServicesOffice,byphoneorin
writing. For more information, visit www.ehealth.gov.au n
www.ms.org.au
LIFESTYLE
Passionate
pursuits
There’s something energising and
enlivening about doing something you
love, and these four people have pursued
their passion despite having MS.
Thinkstock/altrendoimages
Careers advisors often urge young people to identify
what they most enjoy doing and to then think of ways
they can turn that love into employment. The rationale
behind the advice is that if your ‘hobby’ becomes your
career, every day is rewarding for you.
Many people who have MS are lucky enough to have
found an activity, an interest or a hobby to sustain themselves
during their MS journey. Meanwhile, other people who have
MS find ways to continue pursuing their passion even when
the activity they love is under threat because of the disease.
There’s no doubt that in pursuing an interest you love, you
add a fulfilling dimension to your life, and in spending time
doing an activity you find pleasurable, you can, in fact:
• reduceyourlevelofstress
• havethechancetolearnnewskills
• meetnewchallenges
• unitewithpeoplewhoalsofindtheactivityenjoyable
• keepyourselfbusybymakingthehoursflyby
• stayphysicallyactiveand/orintellectuallyengaged
and emotionally satisfied.
If you don’t have an activity you love doing, take
inspiration from these four people and perhaps either
rediscover something you found enjoyable and have
stopped doing or take up a new activity through which
you’ll continue to give yourself pleasure for years to come.
www.ms.org.au
Creative writing
Name: Heather Blight
Age: 75
Lives: Melbourne; mother of four
adult children and six grandchildren
Diagnosed with MS: 2004
Passion: Creative writing
I was diagnosed in my sixties, and my MS is
now secondary progressive. I use a walker, and
suffer from fatigue, but most days I’m reasonably
well. I was 45 when my husband died from lung
cancer. He was 49, and at the time, our children
ranged in age from 17 to 21. Until then, my children,
house and family were my whole world.
I started doing clerical work and sales, and my last
job was in real estate. I retired at 62 and was then bored
out of my brain. A girlfriend had gone back to studying,
and she suggested I take a course at TAFE – so, at 65
years of age, I enrolled in a creative-writing course, and
loved it! Before that, I’d been so focused on other people
that I hardly read a book, and it certainly hadn’t occurred
to me to study anything. But when I took the course,
I discovered I could write, and from that moment on, I
couldn’t understand why I hadn’t done it earlier.
I attended writing workshops, I’ve done an online
course, and I really enjoy learning; in fact, I used an
MS Go for Gold Scholarship to fund my online study,
and my writing improved as a result.
My first book, Singled Out, is set to be published this
year. It started life as a screenplay. It’s a satire on the
‘middle-aged, single’ life in Melbourne during the 1980s,
and it’s loosely based on my single friends’ experiences
during that period of my life. When I’d turned the
screenplay into a novel, I Googled ‘chick-lit’ and found
that Soul Mate Publishing, based in New York, was
taking submissions, so I sent off three chapters and a
synopsis. I couldn’t believe it when they replied that they
wanted to publish my novel! I’ve been working with one
of the editors, and it’s been a steep learning curve and
hard work, but it makes me happy. Nothing external
can make you happy; the only thing you get that happy
feeling from is what you enjoy doing.
I love writing, because I get to use my imagination.
Before I discovered writing, I hated being on my own,
and I found that aspect difficult, because due to my MS,
I find it hard to get out and about as I used to. Now,
though, I’m never bored, because I sit at the computer
and work on something. I feel happy, and I don’t even
have to go out the front door. When I’m writing, I’m
content, and because I’m about to be published, I feel
proud of myself for having that achievement.
I write non-fiction as well as fiction, and as soon
as I finish editing my novel, I’ll go back to working on
the memoir I’ve started. I really don’t know what I’d
do if I hadn’t discovered writing and the sense of
fulfilment I get from it.
Heather’s novel Singled Out will be available via the
publisher’s website at www.soulmatepublishing.com
autumn 2014
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35
LIFESTYLE
All things sport
Name: Tim Ryan
Age: 29
Lives: Melbourne, with wife Leanne
and baby daughter Quinn
Diagnosed with MS: Age 25
Passion: Sport, especially Australian Rules Football (AFL)
I grew up in Bairnsdale, Victoria, and when I was eight, I
started kicking a ball around with my older brother. In high
school, I was the ‘school jock’ – I love all things sport. Also,
I met my wife Leanne in high school, but we didn’t meet up
again till she was 19 and I was 20.
By then, I’d played a fair bit of footy. I was in the state
Under-18 competition (the TAC Cup) with Gippsland Power,
and I was selected to go to the Australian Institute of Sport
and the AFL Academy. I got a couple of calls from AFL clubs
and did a pre-season with the Melbourne Football Club, but
that path didn’t eventuate, so I played in the Victorian Football
League (VFL), for Port Melbourne, for four years. A highlight
was winning the 2004 grand final.
By that time, I’d come to own four Kelly Sports franchises,
and we were coaching in primary and high schools. When I
sold the businesses, I worked for the company’s head office.
In 2007, Leanne and I went backpacking in Vietnam, and
I proposed to her on an isolated beach there. We were so
happy! One day, I was playing a video game of tennis, and
the ball became two balls, and I couldn’t shake the double
vision. After a week of trying to shake it off, I went to the
doctor, thinking all I’d need was glasses, but I was soon
diagnosed with MS.
I didn’t dwell on it; I got an eye patch to fix the double
vision, and moved on. I was still able to go for runs, and I
figured it was like all the previous injuries I’d had: I’d
worked them through and gotten back to how I’d been.
When everything returned to normal, I figured I was the
first person in the world to cure himself of MS.
By then, I’d come to be working for Crust Pizza, for which
I’m now the National Projects Manager, responsible for
franchise recruitment and store construction. Back in 2008,
though, about six months after I was diagnosed with MS, I
was running around the oval with Leanne and couldn’t feel
my feet touching the ground. Over a month, I got worse.
My legs were so badly affected that my father-in-law had to
drive me to work and I kept falling over in the office.
After a few months, I’d recovered a bit, but I had to accept
that I needed a stick and couldn’t walk further than a couple
of hundred metres. I never got back to running, and I last
played competitive sport in 2008.
I missed it: I like the camaraderie and the atmosphere, the
sense of purpose I got from football, and the feeling of having
oxygen filling my lungs when I’m breathing hard – and I like
pushing myself.
In 2013, I met with a consultant from the MS Employment
Support Service, and she suggested I look at wheelchair
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Tim Ryan
has taken up
basketball.
basketball. It was a great idea, and I’ve now played a few
games. My sense of joy and excitement and my competitive
instincts came back. I’m learning ‘big time’, because you
have to push a chair and bounce a ball, but it’s so rewarding
and such fun. It’ll take me a long time to get the skills, but I’ve
trained with the Victorian team and I’d love to see how far I
can go in the competition.
When I lost mobility, Leanne gave me a poster: “Life’s not
about waiting for the storm to pass; it’s about learning to
dance in the rain.”
If you have a passion, you can find the essence of it
and learn to adapt so you still get the satisfaction from it.
It’s amazing how you can adapt even when you at first
thought you couldn’t.
When I lost mobility,
Leanne gave me a
poster: ‘Life’s not about
waiting for the storm to
pass; it’s about learning
to dance in rain.’
www.ms.org.au
LIFESTYLE
Wilderness walks
Name: David Stratton
Age: 62
Lives: Newstead, Victoria, with wife and carer Ros Hart
Diagnosed with MS: Age 44
Passion: ‘Disabled access’ to wild places
Bushwalking, or hiking, as it’s called in Canada, where
we were living, is our passion. I thought that stumbling
on the rough tracks was normal; Ros thought not, and
I was subsequently diagnosed with MS, which is now
secondary progressive.
For all my mobility, I’m dependent on wheelchairs: a
‘manual’ indoors, and a ‘power chair’ when I’m out and
about in the village. Ros drives our little white van, with
both chairs on board and with me ‘craned’ into the front
passenger seat, so we can go anywhere.
I got my love of hiking as a child, when my family
went walking up mountains in England, Scotland and
Europe. I remember deciding I’d get lonely sulking at
the bottom, so I joined them, and that triggered my love
of wilderness areas.
Obviously, due to my loss of mobility, I could no
longer go hiking. Then, in September 2009, we revisited
Canada, and a dear friend suggested I try a TrailRider. I
did, but against my better judgement, because the rider
looks so helpless! The TrailRider is a one-wheeled cross
between a wheelbarrow and a sedan chair. The wheel
supports the rider’s weight, and there are handles at both
the front and the back, so two, three or four ‘sherpas’
can guide the rider up and down the tracks. Having only
one wheel to think about, and no carrying, the TrailRider
can get past obstacles and over difficult rough tracks. We
walked on Cypress Mountain in Vancouver, four months
before the Winter Olympics were held there, and we went
to the kind of places I never thought I’d see again.
I realised that having one wheel on the ground and a
team of willing sherpas was the key to getting into wild
places. With help, I could get away from the ‘manicured’
wheelchair tracks, to the kind of places I used to walk
in. I felt as if I was breaking out of a cage – I could
reconnect with nature. Out there in the wilderness are
plants, animals and fruit you’ll never, ever find in the tame
but crowded spots that are so thoughtfully provided for
‘disabled’ people. When I’m in a wild place, I feel I’m
no longer disabled, and I’m uplifted emotionally and
psychologically. There’s also the feeling of being an
essential part of a team: sherpas and rider.
We returned to Australia determined to ensure that
other people could enjoy the same experience. For any
TrailRider passenger, the starting point is to wish for those
experiences of being in the wilderness. Maybe you used
to love the wilderness. Maybe you’ve never been in it.
www.ms.org.au
The TrailRider and a team of sherpas are your gateway
to another world.
We want to see the TrailRider made available in all
our national parks, because national parks are a national
treasure that has to be shared as widely as possible. We
lobbied to have the TrailRider introduced in Victoria, and
Parks Victoria has been quick to adopt the vehicle.
Eight TrailRiders are now available in Australia. Parks
Victoria makes TrailRiders available free of charge in the
Grampians, Wilsons Promontory, Lysterfield and Cape
Conran parks. In the parks at Wilsons Promontory,
Point Nepean and Cape Conran, Parks Victoria provides
beach-access wheelchairs that have fat tyres so the
wheelchairs don’t sink into the sand. TrailRiders are also
available at the Victorian visitor centres located in the
parks in Torquay, Bacchus Marsh and Daylesford. It
won’t be long before the Victorian shires of Ballarat,
Bright and Apollo Bay have them as well, and funding
is being sought for making the vehicles available in the
shires of Bendigo and Castlemaine. In the ACT, they’re
available in Tidbinbilla Nature Reserve. Parks and Wildlife
Services Tasmania is seeking funding to have them
made available in Mount Field National Park, in northern
Tasmania, and the NSW National Parks and Wildlife
Service is seeking funding to make them available in
Sydney Harbour National Park.
In order to get this campaign started and to keep the
ball rolling, we decided to start a blog so there could be a
central point dedicated to Australian TrailRiders. Readers
can use the blog to find a TrailRider, watch videos about
TrailRiders and discuss their personal experiences using
a TrailRider. If you’re interested, you can learn more
athttp://trailridertales.blogspot.com
David Stratton
in the TrailRider
with his ‘sherpas’.
autumn 2014
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37
LIFESTYLE
Diane Groenewegen
recently held an
exhibition of her
fabric art.
Life-long love
Name: Diane Groenewegen
Age: 69
Lives: Sydney, married with two adult children
and three grandchildren
Diagnosed with MS: 1984
Passion: Collecting fabrics and ‘ephemera’,
and creating fabric art
I started collecting as a child, being inspired by a box of
special fabrics that had belonged to my nanna. I only ever
glimpsed them occasionally, but those encounters were
the trigger for my interest in beautiful textiles. I have a
purpose-built studio in our backyard to house the
collection I’ve been amassing over 50 years.
My studio is a big room filled with boxes of things I’ve
catalogued. There are 10 boxes of buttons – I’ve got
approximately 10,000 buttons – and about 60 plastic
containers of fabrics, some of which are French and are 200
yearsold.I’vealsocollectedvintagefloralsfromthe1930s
and ’40s, along with antique clothes, hats, and underwear.
I get tremendous satisfaction and pleasure from my fabrics,
and they become my inspiration as well as the material I use
to create my artwork. In each piece, I endeavour to capture a
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‘look’, a ‘feel’ or an ‘atmosphere’ from either the past
or my imagination.
After I left school, I studied at the National Art School,
specialising in screen printing and design. Later, in the
mid-1970s, I studied art education at Alexander Mackie
College of Advanced Education and worked as an art
teacher. I was diagnosed after I started to fall over at the
school I was teaching at. My MS still affects how I walk, but
most people don’t notice. I’m continuing to teach, but mostly
to the adults who take classes in my studio, for techniques
such as ‘vintage fabric collage’ and print making.
I’ve been exhibiting my artwork since the 1970s, in single
and group shows, both in Australia and overseas, and over
the past few years, I’ve self-published six books centred
around my art, exhibitions and research.
The most recent book was about the artworks I created
for an exhibition of antique fabric collage. The exhibition was
entitled Living in Two Worlds and was held in July last year, at
the Seaview Gallery, in the Sydney suburb of Dulwich Hill. In
2012, I was grateful to win an MS Go for Gold Scholarship to
help myself fund both the exhibition and the book. I used the
financial help to present a very professional exhibition.
My husband and I hung the artworks and I minded the gallery
each day, with the help of some friends.
Being involved in the exhibition was tiring but extremely
satisfying. The exhibition was very successful, and I sold
a good percentage of the artworks and all 60 of the books
I’d had printed.
I’m lucky that my passion isn’t just a hobby; it’s my
profession, and it’s grown and developed over the years.
It’s also something I can do even though I have MS. I think
of my studio as being my little bit of heaven! ■
www.ms.org.au
WHAT’S NEW: MS-RELATED RESOURCES
Check out the latest resources, sourced by the MS Library.
E-books
The MS Library has a
small collection of e-books
that are available for loan
and can be accessed if
you have a computer and
Internet connection.
E-books can be
read on a computer,
an e-reader or a smart
phone. As is the case
with lots of technology,
not all e-books are
compatible with all
e-readers. The e-books
we have purchased
aren’t compatible with
Kindles or some other
proprietary e-readers, but
they can be read on most
other e-readers and on
computers and
many smartphones.
If you’d like to
access our e-book
collection, please
contact the MS Library.
On the shelf
The essence of health:
The seven pillars of
wellbeing
by Hassed, C.
Ebury Press
We’ve purchased
additional print copies of
this popular book and are
now making them available
for loan. The book is a
guide to lifelong wellness,
and for each of the seven
‘pillars’,DrHassedhas
integrated traditional
wisdom and modern
science in order to devise
a program that can be put
into practice every day.
Carry a big stick: A funny,
fearless life of friendship,
laughter and MS
by Ferguson, T.
Hachette Australia
Tim Ferguson, the wellknown Australian comedian,
started his public life as
part of the musical-comedy
trio The Doug Anthony
Allstars, who performed
throughout the world. In this
autobiography, he traces
his life from his childhood in
the 1960s to his presentday life, during which he
was diagnosed with MS.
Tim writes about joining
The Doug Anthony Allstars,
starting a theatre company,
touring the world as a
comedian, and working
in television.
The book is laid out in
acts and is split into scenes,
with titles such as:
• Buskinginapostapocalyptic mall
• Thecaravanofcomedy
• Uncomfortablynumb
• Runningwithscissors
• Playingwithmatches
• Comingout
Having spent many
years trying to hide his
MS diagnosis, Tim now
discusses it openly but
without letting it be his
defining factor.
Exercises for multiple
sclerosis: A safe and
effective program to fight
fatigue, build strength,
and improve balance
A journey to peace
through yoga
by Dickinson, L.
Brolga Publishing
This book is both an
autobiography and a
description of how one
The author of this book,
woman learnt to use the
Brad Hamler, is a fitness
tools of yoga and meditation
professional who has more
in order to manage the
than 20 years’ experience in
symptoms and stress that
post-rehabilitation and has
living with MS entails.
worked with many people
The author, Lynette
who have MS.
Dickinson, describes
The author emphasises
her experiences of
the importance of having
near-bankruptcy,
a comprehensive wellness
relationship breakdown,
approach when you’re living
house fire, migration to the
with MS, and in the book, he
provides just that, in the form of UK,teachinginaninner-city
a workout program that can be school in Bristol, and her
father’s death.
adapted to everyone’s needs,
Lynette is a mother of
because people who have MS
three; lives in Canberra; and
have different energy levels.
now teaches yoga, relaxation
The content includes:
and meditation to people
• definitionof
of all ages who have MS,
multiple sclerosis
• treatmentofthesymptoms cancer or autism as well as
to people who don’t have
• thebenefitsofexercise
a disability. In relation to
• gaitanalysis
her story, Lynette refers to
• ‘core’and‘ab’training
specific yoga practices and
• resistancetraining
includes them at the end of
• adoptionofa
each chapter.
positive approach.
Also available on YouTube
Also included are three
is a talk that Lynette delivered
appendices: a glossary,
at the Dru Yoga Discover
a training log and a list
Yourself workshop that was
of resources.
held in Albury, NSW in 2011.
Go to www.youtube.com/
watch?v=a8pNE2Qpul0
by Hamler, B.
Hatherleigh
To borrow books or for help in accessing online resources, please call the MS Library,
located in Blackburn, Victoria, on (03) 9845 2809 or email the Library at library@msaustralia.org.au
Contact your local bookshop if you’d like to buy a copy of a printed book.
www.ms.org.au
autumn 2014
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