Stay employed

Transcription

Stay employed

The Official Magazine of MS Australia – ACT/NSW/VIC
www.msaustralia.org.au/actnswvic
Spring 2013
ISSN 1833-8941
Print Post Approved:
100003204
Spotlight on
sex and intimacy
Great ideas
that will inspire
you to exercise
Stay
employed
With support, you
can keep on working
DISABILITYCARE
AUSTRALIA
What happens next?
FINANCIAL
INFORMATION
Superannuation and insurance
www.facebook.com/MSAustralia
Editor: Toni Eatts
Publisher: Multiple Sclerosis Limited
ABN: 66 004 942 287
Website: www.msaustralia.org.au/actnswvic
http://twitter.com/MS_Australia
www.youtube.com/MSSocietyAustralia
14
Frequency: Published quarterly in March,
June, September and December
Advertising enquiries:
Tel: (02) 8484 1316
Email: [email protected]
Design: Byssus, (02) 9482 5116,
www.byssus.com.au
Photographs: The stock images published in
Intouch are sourced from Thinkstock.com
Printing: Webstar Print
MS Australia – ACT/NSW/VIC
ACT
Gloria McKerrow House
117 Denison Street
Deakin ACT 2600
Tel: (02) 6234 7000
Fax: (02) 6234 7099
NSW
Studdy MS Centre
80 Betty Cuthbert Drive
Lidcombe NSW 2141
Tel: (02) 9646 0600
Fax: (02) 9643 1486
Victoria
The Nerve Centre
54 Railway Road
Blackburn VIC 3130
Tel: (03) 9845 2700
Fax: (03) 9845 2777
MS ConnectTM (information and services):
1800 042 138 (free call)
Regional offices:
Visit www.msaustralia.org.au/actnswvic
and click on ‘Contact Us’.
Privacy Policy: For our full policy document,
visit www.msaustralia.org.au/actnswvic
ISSN: 1833-8941
Disclaimer: Information and articles contained
in Intouch are intended to provide useful and
accurate information of a general nature for the
reader but are not intended to be a substitute
for legal or medical advice. Multiple Sclerosis
Limited is not recommending medical or legal
advice, and readers must seek their own medical
or legal advice as might be appropriate.
36
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Advertising disclaimer: Advertisements
are provided to assist consumers to locate
and purchase suitable products and services.
Multiple Sclerosis Limited does not endorse
any one product or service over another; nor
do we receive any commission on sale of
items. Consumers are encouraged to discuss
the options for exchange or return at time of
purchase with a specific supplier because
Multiple Sclerosis Limited is not liable in the
event the product is not satisfactory.
MS Australia – ACT/NSW/VIC is a not-forprofit organisation that has been supporting and
helping people with multiple sclerosis (MS) since
1956. Through an extensive network of centres,
branches, support groups and health services,
the organisation provides specialist programs to
people with MS, their families, carers, friends and
healthcare professionals.
© Multiple Sclerosis Limited, 2013
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Contents
CEO’s message
FEATURES
Welcome to the Spring 2013 issue
of Intouch.
First, I’d like to acknowledge the
legacy and tremendous contribution
made by Jeremy Wright, the founding
CEO of MS Research Australia, and
to warmly welcome Dr Matthew Miles,
previously from the University of NSW
School of Medicine, to the role. Matthew
is now leading the high level of research
activity and the record level of research expenditure. We’re firmly
committed to ultimately finding a cure for MS and to eliminating the
disease’s impact on the lives of individuals and families. Until that
day, we won’t rest; we’ll push ahead. Until then, our organisation
will continue to exist to improve lives and eliminate the compromises
imposed on them, and we’ll be sharing examples of how the
changes are already leading to improvements in people’s lives.
A number of important developments have occurred since the
last issue of Intouch. In particular, from 1 July 2013, people who
have a disability, and their family and carers, have started to move
into DisabilityCare Australia (DCA), at four launch sites: the Hunter
area of New South Wales, the Barwon area of Victoria, in South
Australia for children, and in Tasmania for young people. Importantly,
commencing in July 2014, the DCA launch is being extended to
Western Australia and the Australian Capital Territory.
Our organisation has two launch sites that are demanding our
attention, and we’re also not only maintaining our existing services
but improving them. This maintenance and improvement are good
for people who have a disability, and rest assured we don’t think our
work is done – we’re striving to remain abreast of developments.
As the details of the scheme unfold, we’ll remain actively involved
to ensure that the needs of people who are affected by MS can be
met. Our regional staff members will help our clients navigate the new
system, and we also want to collect feedback in order to influence
any changes that might be required. So be sure to go to page 10 for
an update about how DCA is being implemented. Our organisation
is at the forefront, not waiting for changes to happen: we’re
preparing now for what has already begun.
For some years, MS Australia – ACT/NSW/VIC has been offering
the MS Employment Support Service (ESS) to clients living in Victoria.
The team members are poised to soon be operating in Sydney,
and we have plans to expand the service even more. For an insight
into the help the ESS can provide, take a look at the ‘MS and
Employment’ feature on page 14.
It makes for happy reading!
10 It’s here!
DisabilityCare Australia − the
National Disability Insurance
Scheme – is open for business.
12 My story: Keep on going
Terri Laurence urges people
who have MS to become
involved in the community.
14 Strategies for work
Learn some steps to take
so you remain employed.
28 MS Awareness
Month highlights
Catch up with what
happened during the Kiss
Goodbye to MS campaign.
30 Financial information:
Employment and super
What your rights are and how to
access your superannuation
MS COMMUNITY
23 Community fundraising:
Thank you for your hard work.
24 Volunteers in action:
Meet people who are helping
to make a difference.
26 Peer support:
Sharing the MS journey
27 Support Group profile:
The Esperanza Peer
Support Group
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HEALTH & WELLNESS
32 Take charge of your health:
Invest in a cooling vest.
33 Ideas for exercise:
Be inspired by these activities.
36 Spotlight on: sex and intimacy
S
ER
AR
5 Your say
6 News
9 MS insights
13Q&A
19 MS Readathon and Bequests
20 Events
22 Family and carers
39 New resources
Robyn Hunter
CEO, MS Australia – ACT/NSW/VIC
C
REGULARS
Look out for this symbol for
information and articles that
are specifically relevant to
family members and carers
of people who have MS.
spring 2013
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Editor’s note
Many people dream of the day on which they’ll retire from the workforce, but
very few want to be forced into early retirement because of illness or injury. Sadly,
when people are diagnosed with MS, one of the numerous worries they face is that
they’re afraid they’ll have to leave their job. Although MS symptoms can definitely
have an impact on your working life, they won’t necessarily cost you your job.
In fact, if you’re supported to address how the symptoms affect your working
life, you’re able to remain employed for many years. You not only remain productive
and financially secure; you find that the support burden is taken away from your
family and the government – a good result all round.
This is one of the reasons that MS Australia − ACT/NSW/VIC is determined
to assist people who have MS to remain at work. It provides help via the MS
Employment Support Service (ESS): a small, committed team led by Stephen Jolly,
the Manager, and Joanne Airey, the Senior Employment Support Consultant. The
ESS has been established in Victoria, is expanding into Sydney, and is planning to
operate in NSW and the ACT.
Having had the pleasure of meeting Stephen and Joanne and hearing how
passionate they are about ensuring that people who have MS can access all the
help they need in order to keep working, I urge you to read the feature on page 14.
When you work, you get so much more than a wage, so if you’re struggling in your
job, consider seeking support and assistance.
Toni Eatts
Editor
Remember: You can now receive Intouch via email. If you’d like to receive
the magazine and MS Research Australia’s Next newsletter via email,
please either email [email protected] or fill in and return the form
on the front of the packaging this issue was mailed in.
Follow us online
www.facebook.com/MSAustralia
http://twitter.com/MS_Australia
www.youtube.com/MSSocietyAustralia
Win an Audi A1 or gold bullion to the value of $33,000
Win first prize in our latest Art Union and you’ll
have the choice of a new Audi A1 1.4 hatch
valued at $36,800 or gold bullion to the value of
$33,000 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 you’ll have the
opportunity to both win one of these incredible
prizes and help MS Australia – ACT/NSW/VIC in
providing vital support to people living with MS!
The competition will be drawn
on 20 September.
Giving Life Back
For more information and to purchase tickets, visit www.msraffles.org.au or FreecallTM 1800 287 367
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Your say
Thank you for sharing your stories, tips and feedback.
We’d love to hear more!
Email us at [email protected] or post your letter to ‘Intouch’, PO Box 210, Lidcombe NSW 1825.
Write in to WIN!
Keep your feedback and stories
coming in! Next issue’s theme
will be ‘Parenting and MS’.
Readathon reminder
I noted with interest the story about this year’s MS Readathon
in the Winter issue of Intouch. In 1979, when I was in Year 7,
I participated in the MS Readathon – see my certificate on
this page – so how ironic it is that in 2011, I was diagnosed
with MS. I now realise I should have read more books!
All readers who have their letter published will win an
organic tea and chocolate
indulgence pack.
Samantha Keir (née Bryant)
East Brighton, Vic
Editor’s note: After reading Samantha’s letter, we wondered
whether any other readers had participated in the MS
Readathon while they were at school and had later
been diagnosed with MS. If your experience is similar to
Samantha’s, please email us at [email protected]
Book provided self-help
I usually find something helpful in Intouch, and the Summer
2012 issue was no exception. I was diagnosed in 2008,
but most of my symptoms are of the insidious, invisible type
− fatigue, heat intolerance, depression, anxiety, insomnia
and, my personal favourite, incontinence. Lately, I’ve been
struggling with the depression and anxiety, so when I saw
Dr Patricia Farrell’s book It’s Not All in Your Head in the
‘What’s New’ section, I didn’t hesitate to borrow a copy
from the MS Australia – ACT/NSW/VIC library.
It’s like a huge weight has been lifted from my shoulders.
Not only does someone understand what I’m trying to deal
with; she also provides some self-help techniques so I don’t
have to rely on shoving another chemical into my body.
Thank you, Intouch and the MS organisation, for not
only bringing this book to my attention but enabling me
to borrow it.
Mel Bretherton
Point Cook, Vic
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spring 2013
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5
NEWS
MS advocates confer
MS Australia (MSA) hosted the
National Advocates Conference
‘Championing the MS Cause’
in Melbourne, in July. The event
was the first opportunity for Debra
Cerasa the new CEO of MSA, to
meet with members of the National
Advocates program.
“We’re truly blessed that so
many hardworking advocates
are keeping important matters for
people with MS on the agenda
of politicians and potential
sponsors,” Debra says.
The conference featured a range
of keynote speakers, including
Janine Shepherd, who’s a former
winter Olympian and who was
once a paraplegic but now not
only walks but flies planes, and
Carly Findlay, who’s a prominent
disability advocate.
During the two-day conference,
the advocates began fleshing out
the priorities and issues that MSA
will take forward in advocating on
behalf of people who have MS. n
Project needs you
Research project leaders at The
University of South Australia, in
partnership with MS Australia,
want your help in undertaking
research into how Australians
who have MS use electricity for
medically required cooling.
They’ll use the results in order
to inform energy policies, including
the effectiveness of existing energy
concessions. They’re seeking
households located within a
20-kilometre radius of Pennant
Hills, in Sydney’s north-west. If you
choose to participate, a researcher
will collect information about your
air conditioner and house, and will
need your permission to obtain
two years’ worth of bills from your
energy retailer. If you’re interested,
call Dr Frank Bruno at The University
of South Australia on either
(08) 8302 3230 or 0413 853 257. n
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Beck Holland,
the ACT shop
manager
Shop opens in the ACT
After many months of preparation,
and aided by the new Tuggeranong
volunteers, our new MS Community
Shop opened in the ACT on 15 July.
“It’s an exciting time,” says Ara
Levonian, Retail Operations Manager,
MS Australia – ACT/NSW/VIC. “We
now have 10 shops in Victoria, one in
Sydney and one in the ACT. The shop
gives the MS organisation a face in the
Canberra community, and wherever we
have a shop, we have an increase in the
awareness of our brand.”
The ACT shop is located in the
Homeworld Centre at Tuggeranong,
and is open from Monday to Friday from
9.30am to 5pm and on Saturday from
9am to 2pm. Beck Holland has been
appointed to manage the shop. She
supervises a team of 11 volunteers,
but confirms that more volunteers
are required.
According to Ara, “One of the
impressive aspects of the ACT
shop is the quality of the clothing,
shoes, handbags and household
items that have been donated so
far; however, still more items are
needed. By making high-quality
merchandise available, we promote
‘word of mouth’ among shoppers, so
we anticipate a boost in sales.”
Last year, the shops contributed
$250,000 to the organisation, and
Ara expects the figure to increase as
the ACT shop gains strength. “We
began with a ‘soft’ opening, and early
indications are excellent.” n
Ruth wins OAM
The founder of our popular MS
Singers choir, Ruth Hawkins, has been
awarded an Order of Australia in the
Queen’s Birthday Honours List.
Ruth began the choir at The Nerve
Centre, Blackburn, eight years ago, but
it’s only one of the voluntary projects
she’s involved in. She was awarded the
OAM in recognition of her community
services for Maroondah, which is the
area she lives in.
Music is in Ruth’s blood, and she
helped her mother start the Ringwood
Eisteddfod almost 60 years ago. Now
81, Ruth still organises the annual event.
“I’m the fourth generation of a
musical family,” she says. “I came in
contact with The Nerve Centre when
I was helping raise money for a piano
for the Centre. When we got the
piano, I decided to form the choir.”
The MS Singers have about 12 regular
Ruth Hawkins
members, and Ruth is both choir leader
and accompanist. The choir members
rehearse at The Nerve Centre every
Thursday from 11am to 12 noon and
perform in nursing homes and clubs
as well as for senior groups.
“We’re out performing nearly
every week,” Ruth says. “And we
get invited back again and again.
We’re always seeking new members,
and you don’t have to have a good
voice to join in the fun!” n
News from MSAC
New MSRA CEO
Dr Matthew Miles has settled
Matthew
into his role as Chief Executive
Miles
Officer of MS Research Australia
(MSRA) after taking over from
foundation CEO Jeremy Wright, who retired in late June.
“I’m greatly enjoying leading MSRA,” Matthew says.
“MSRA has a truly excellent reputation in funding the best
MS research that Australia has to offer.”
Paul Murnane, MSRA Chairman, says Matthew brings
a unique combination of skills to the role: strong business
and fundraising experience, marketing and communications
expertise, government-relations know-how, and clinical
knowledge of neurological and related health issues. For
the first 15 years of Matthew’s career, he was a practising
veterinary surgeon working in Australia, the UK and
Singapore. He then became more involved in the ‘university
and not-for-profit’ sector, especially focusing on business
management, external relations and medical research. He is
an Associate Fellow of the Australian Institute of Management
and a graduate of the Australian Institute of Company
Directors, and he has an MBA from the Australian Graduate
School of Management.
Most recently, he was a Director of Strategy, Development
and External Relations at the School of Medicine at The
University of New South Wales. In that role, he helped raise
tens of millions of dollars in donations, pledges, grants and
sponsorships for critical medical-research initiatives; indeed,
annual fundraising at UNSW Medicine increased dramatically
during his almost six years in the role.
“I know all too well the devastating impact a disease such
as MS can have on people, their family and their loved ones,”
Matthew says. “It’s a privilege to have the opportunity to play
a part in tackling the MS challenge.” n
MS friends meet
In June, staff members and
advocates from MS Australia,
MS Australia – ACT/NSW/
VIC and MS Research
Australia made their annual
pilgrimage to Canberra to
meet with the Parliamentary
Friends of MS.
The longstanding event
is a unique opportunity to
educate some of Australia’s
key powerbrokers about
living with MS. Hosted by
senators Kate Lundy and
Gary Humphries, the event
was attended by members
of parliament who included
Andrew Leigh and Mike
Symon, as well as Amanda
Rishworth, Parliamentary
Sarah Ross-Smith gives her
address, watched by Ann Lehmann,
Regional Manager Central.
Secretary for Disabilities
and Carers. The discussion
included topics such as
DisabilityCare Australia,
and a highlight was Sarah
Ross-Smith’s emotional
presentation. Sarah is a
lawyer and an ACT resident
who’s lived with MS for more
than 15 years. A thankyou
was also given to outgoing
senator Gary Humphries for
his years of support. n
By Andrew White and Mike Hemingway,
Chairs, MS Advisory Council, Victoria and NSW
Have you ever wanted to win the lottery and never have
to work again? For those of us in regular work, this can
seem attractive. But for many of us who have MS, the
possibility of not working seems more of a threat than
an opportunity. We obviously need to have a regular
income, but in recent years, according to the results
of human-resource and psychology studies, having
meaningful work is also important for social connection
and psychological wellbeing.
So, before we abandon work and its benefits, we
should seriously consider our options. Some employers
are open to enabling us to have flexible working
arrangements, or we can think about the experience,
skills and knowledge we have and how they can be used
in other types of work that are more disability friendly.
MS Australia – ACT/NSW/VIC has an employment
service through which you might be able to help yourself
continue working despite the impact of your MS.
In other news, our NSW team members recently
held a planning day and are now reviewing the web
sites of MS Australia – ACT/NSW/VIC and the national
organisation, MS Australia. The aim of the review is to
provide feedback about the websites while they’re being
improved. MSAC NSW is also working with the Victorian
MSAC team to examine carers’ needs.
Meanwhile, MSAC Victoria is continuing to talk to
carers via the MSAC Carer Project page on Facebook
so we can provide feedback to the MS Australia –
ACT/NSW/VIC board members and leaders. We’re
also examining how the MS organisation might more
effectively connect with and meet the needs of people
who’ve recently been diagnosed with MS.
If you wish to discuss employment or anything else,
please contact us via the details below. And remember
that by registering at our web site and visiting us on
Facebook, you can provide us with a valued perspective
we can share with the board, leaders and team
members at MS Australia – ACT/NSW/VIC.
Telephone: (03) 9845 2794
spring 2013
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Organisation update
Preparing for
the future
MS Australia – ACT/NSW/VIC is
committed to improving the lives of
people who have MS and to eliminating
the compromises imposed on these
people as a result of the disease.
To meet these commitments, the
organisation has to be sustainable and
ultimately to thrive. However, Robyn
Hunter, CEO of MS Australia – ACT/
NSW/VIC, points out that in recent
years the organisation, as is the case
with many not-for-profit organisations,
has been experiencing unprecedented
environmental change.
“The change has occurred both
internally and externally,” she explains.
“Some of the change has been very
positive, and some has entailed a
unique set of challenges.”
The two major changes have been
the introduction of DisabilityCare
Australia (DCA) – a comprehensive,
watershed social-policy reform that
affects the disability sector – and
a significant increase in charities
competing for fundraising.
“Both have very real consequences
for us,” Robyn says. “Both have
an impact on the way we as an
organisation approach the future, and
for both, our leadership team has been
required to analyse the way we’re
currently operating. We’ve had to look
in detail at the impact the changes
will have on people with MS, and to
chart a course for the future.”
In this strategic analysis, the needs
of people affected by MS are always
placed as paramount. “The prevalence
of MS is increasing at an apparent rate
of 4 per cent a year. Also, the practical
outcome of the recent National Needs
Analysis is identification of a range
of unmet needs of people who are
living with MS. We have to think
differently about the way we’re providing
support and care, and we’re making
changes and preparing now.”
As a result, Robyn and the executive
team are positioning the organisation
as being a high-quality, MS-specialist
organisation providing services that
span the lifetime needs of people who
have MS, from early symptoms and
pre-diagnosis onwards.
Our goal
In order to position itself in that way,
the organisation has committed to
keeping a long-term promise whereby
the strategic goal is to deliver more
benefit to more people who are
affected by MS. Person-centred
approaches and funding are good
news for people who have a disability,
but they mean that service providers
must adapt and change.
“We’re not waiting for the changes
to be imposed,” Robyn says. “We’re at
the forefront, preparing now and acting
now to ensure that services are not just
maintained but improved. We’re aiming
to improve our financial strength. As an
organisation, we’re working hard
to increase fundraising revenue.
We’re also revising our operating
models to ensure they’re efficient and
sustainable, and we’re identifying the
areas in which we’ll be championing
the needs of people living with MS, by
ensuring we remain relevant.”
Robyn points out that most clients
won’t notice a reduction in services
as a result of the changes. “Services
might be delivered in a different way,
but we want to assure people who
have MS that we’ll work with all our
clients who are affected, in order to
provide alternatives.”
However, Robyn accepts that some
concern about the changes has been
voiced, and she assures our clients
that she and the Board are listening
to their feedback. “I urge people who
are concerned to visit our website, on
which they’ll find more detail about the
changes and who stands to benefit from
them. On the website, you’ll find links
to other information resources, which
are there to help you better understand
where we’re headed, and you’ll also
find examples of how lives are already
improving as a result of the changes.” n
To find out more
For more information about the changes being made to MS Australia – ACT/NSW/VIC and to give feedback or ask questions:
• go to the ‘Our future’ section of our website, www.mssociety.org.au
• email [email protected]
• call MS Connect on 1800 042 138.
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MS insights
Snapshots of the latest
in global MS research
Vitamin D and fatigue
Potential new treatment
Only nine people who have MS were included in the Phase I clinical trial, but the
results as published in the Science Translational Medicine journal are promising.
In the trial, which was designed for testing the treatment’s safety in humans,
the researchers investigated a new treatment that’s aimed at stopping the body’s
immune system from attacking myelin. According to the study results, the
treatment is safe, and although the patient numbers were too small for proving
whether it was of benefit to MS patients in general, the findings suggested that the
treatment could be of use in preventing myelin damage.
They attempted to ‘re-train’ the immune system of people who had MS in
order to specifically prevent the attack on myelin. The team members took blood
samples from people who had MS, and separated out the white blood cells. They
then attached parts of the myelin protein to the cells and re-injected the modified
cells into each person. Applying this technique, they encouraged each patient’s
immune system to develop tolerance towards the myelin proteins, and hopefully
use the new tolerance to prevent attack.
According to study author Professor Stephen Miller, “Our approach leaves the
function of the normal immune system intact. That’s the holy grail.” In existing MS
treatments, suppression of the entire immune system can lead to side effects.
More research into this new treatment is necessary in order to determine whether
the treatment is an effective form of MS therapy. For more information, go to
www.msra.org.au/us-researchers-find-new-ms-therapy n
Thinkstock/luchschen
New oral drug trial
The results of a Phase II clinical trial for siponimod, a modified version of
fingolimod (Gilenya), have been published in the Lancet Neurology journal.
Fingolimod is available for people who have MS.
The clinical trial involved 297 people who had Relapsing–remitting MS. After
three months of the treatment, the patients who’d been given one of the three
highest doses of siponimod – 10, 2 or 1.25 milligrams – had a reduced number
of new or newly active lesions each month, compared with patients who’d been
given a placebo. The lesions were observed by way of magnetic resonance
imaging (MRI). At the highest dose, new or newly active lesions were reduced
by 82 per cent. Higher doses also had higher incidences of side effects. The
most common of which were headache, slow heart rate and dizziness.
Serious side effects included atrioventricular block – impaired electrical flow
in the heart, resulting in a slowed heartbeat – that is sometimes seen in people
who are taking fingolimod.
The researchers reported that siponimod is a promising candidate for
development in Phase III studies. The 2 milligram dose seemed to provide the
best balance between effectiveness and side effects. This is the dose that’s likely
to be followed up in a larger, Phase III clinical trial. For more information, go to
www.msra.org.au/phase-ii-ms-trial-promising-results n
Researchers from the Menzies
Research Institute Tasmania,
including Professor Bruce Taylor and
Dr Ingrid van der Mei, together with
their Dutch colleagues, investigated
the effects of sun exposure
and vitamin D on fatigue and
neuropsychological MS symptoms.
Their results have been published in
Acta Neurological Scandinavica.
Over more than two years, the
researchers examined sun exposure
and vitamin D blood levels in 198
people who had MS and who also
completed a questionnaire about
fatigue, depression, anxiety and
cognition. The researchers found no
close association between vitamin
D levels and depression but found
that the level of depression was
lower in people whose vitamin D
blood level was higher than 80nM.
However, when they took sun
exposure into account, they found
that this association disappeared,
which suggested that sun exposure
has a potent effect on depression,
independent of vitamin D.
In patients who had a higher
level of sun exposure, a consistent
close association with a lower
level of depression was shown.
Fatigue levels were associated
with neither vitamin D levels nor
vitamin D supplementation. Again,
however, higher sun exposure was
significantly associated with lower
fatigue levels. The researchers found
no correlations between either
sun exposure or vitamin D levels and
anxiety or any cognitive measures.
They speculated that the biological
mechanism behind this finding
is mood elevation caused by release
of anti-inflammatory chemical
messengers in the skin
or suppression of melatonin
release when the person is
exposed to daylight.
Note: For ‘safe sun exposure’
guidelines be sure to visit
www.sunsmart.com.au n
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9
NDIS UPDATE
It’s here!
On 1 July, DisabilityCare Australia
− the National Disability Insurance
Scheme (NDIS) − opened its
doors in four launch areas.
DisabilityCare Australia (DCA) promises to apply
individualised funding in order to take a lifelong approach to
supporting people who have a disability. Before DCA, the
type of support that was allocated depended on the number
of places that were available in a limited number of programs.
Under DCA, funding is provided so that people can get
reasonable and necessary care and support, based on
their individual needs, goals and aspirations.
Over the next three years, this new way of providing
individualised support will be tested and evaluated in the
following four areas:
• NSW: the Hunter area, including Newcastle
• Victoria: the Barwon area, including Geelong
• South Australia (for children)
• Tasmania (for young people)
From July 2014, the scheme will commence in the ACT
and the Barkly area of the Northern Territory. The Australian Government is working with the participating
states and territories to roll out the scheme throughout NSW,
Victoria, the ACT, South Australia, Queensland and the
Northern Territory over a number of years.
In DCA’s operating rules, multiple sclerosis is recognised and
listed as follows:
• It’s a condition in which there will generally be sufficient
evidence that the person has a disability that’s attributable
to an impairment.
• Generally, there will be sufficient evidence that the
impairment is, or is likely to be, permanent.
Therefore, a person who’s affected by MS and who meets
the eligibility requirements could become a participant in the
scheme and access the supports if his or her MS has resulted
in a disability. Alternatively, the person who has MS could
be eligible for early-intervention support if intervention is likely
to lead to either a reduction in the person’s future needs in
relation to the disability or alleviation of MS’s impact on the
person’s capacity to function.
Who can use DisabilityCare
Australia?
Anyone who’s affected by a disability, who meets either
the disability requirement or the early-intervention
requirement, and:
• who’s younger than 65
• who’s an Australian citizen
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• who lives in a launch area and meets its specific age
requirement (in NSW and Victoria, it’s ‘younger than 65’).
How do I become a DCA participant?
You need to meet the eligibility requirements as outlined in
this article. You can check your eligibility by accessing the
My Access Checker, which is available on DCA’s website,
www.disabilitycareaustralia.gov.au. The checker is a short
online self-assessment tool. When you’ve completed the
assessment, you’ll be instructed about what to do next. You
might be asked to call DCA on 1800 800 110.
What happens to the funding
I already have?
If you’re an existing client of Australian Government and
State/Territory Government disability programs, your services
won’t change. For example, in NSW, the services might
include personal care and ‘home and community’ care, and
in Victoria, they might include an individual support package,
respite, or home and community care.
Because all people can’t have their support plan facilitated
at once, each launch area has developed a timetable, and
DCA will contact you when it’s time for you to start working on
your plan with the scheme’s representatives.
Thinkstock/JHuntstock
What does the scheme involve?
NDIS UPDATE
Time to learn
Will I lose any of my
current benefits?
The scheme isn’t means tested. If you’re an existing
client of Australian Government and State/Territory
Government disability programs, you’ll continue to
access your current types of support. When it’s your
turn to talk to DCA’s representatives, if you’re eligible
and you’re happy with your types of support, DCA will
make sure your current supports are listed in your plan.
Your individual plan won’t be decreased. The minimum
standpoint is you’ll receive the same level of support,
and you might receive extra types of support based on
your needs and what’s assessed as being reasonable
and necessary.
If you’re not eligible – for example if you’ve turned 65
but you’ve been accessing disability types of support
before that age – you’ll have the choice to continue to
receive the same level of support you’re already receiving
by way of your disability programs.
Will my carer still be eligible
for carers’ payments?
If you live in one of the launch areas, take the time to
learn as much as you can about DisabilityCare Australia
(DCA), advises Deborah Farrell, Acting Regional
Manager South for MS Australia – ACT/NSW/VIC. “There are several ways to do this,” Deborah says.
“In April, and again in July, we hosted a series of
conversation forums in Geelong and Colac to help
the MS community understand the scheme’s various
constructs in preparation for the launch on 1 July.”
More conversation forums will be held in Geelong
and Colac in Victoria and the Hunter region in NSW,
during which:
• people who have MS will be offered the opportunity
to discuss their eligibility and access to DCA
• people who have MS will be offered the
opportunity to discuss how to guide their
discussion with the DCA representatives
about the types of support they require in
order to achieve their goals
• people who don’t have disability types of
support will be offered the opportunity to
discuss how they can access the My Access
Checker and complete the online self-assessment
in order to determine their eligibility.
Deborah says that help will also be given to
people who have MS and who participate in disability
programs funded by the Australian Government
and a State/Territory Government, in order to
determine the timeframe for commencement
of those people’s planning.
Also, MS Australia – ACT/NSW/VIC has
registered to be a DCA service provider in the Hunter
and Barwon launch areas. “All participants will choose
their provider and how they access the types of
support as outlined in their individualised plan. We’ve
registered so we can deliver the types of support to
participants who choose us,” Deborah says.
MS Australia – ACT/NSW/VIC will also:
• continue providing its existing government-funded
disability services and the services it either funds or
subsidises in non-DCA launch areas
• monitor the experiences of people who have
MS and who live in one of the launch areas,
gather information from staff members in order to
understand the issues, and advocate appropriately.
“We want to stay involved so we can learn as
much as possible and support people who have
MS,” Deborah says.
DCA is also holding forums at which you’ll be able to
learn more about how the scheme is operated. To find
out more, go to www.disabilitycareaustralia.gov.au/
Yes, this aspect is unchanged and does not affect
CentreLink payments. n
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My story: Keep on going
Ron Laurence is so proud of his wife Terri’s zest for life that he talked her
into sending one of her journal entries to Intouch. The entry is a description
of a road trip they took on Ron’s trike and was the inspiration for this article.
With laughter in her voice, Terri
Laurence talks about her husband
Ron’s attempts to help her help
herself. “He’s always going crook at
me, because in the kitchen, I reach for
things that are stored above me and I
drop them – in fact, he’s put a sign on
the shelf: ‘ASK FOR HELP!’”
Terri and Ron have been married
for 44 years and have raised four sons,
whose ages now range from 33 to 42.
Terri, 63, was diagnosed with MS
when the boys were between four
and 13 years old. She’s lived with MS
for 30 years by cultivating an attitude
of ‘Just get on with it!’ Hence the need
for a sign. “I’m not good at asking for
help,” she admits.
It was early on that Terri learnt to
cope with what life dealt – in fact, Ron,
who spent 25 years serving in the
Australian Army, was doing a tour of
duty in Vietnam when their first child,
Robert, was born.
Terri says, “For the first year, I
brought Robert up on my own.” The
lad had turned 13 and Terri’s youngest
son was four when pins and needles
in her hands, arms and legs led to a
diagnosis of MS.
“The doctor told me to get on
with my life. I decided I wanted to
guide the boys through their
education and see them married.
I didn’t say much to the kids about
having MS. Robert was doing the
MS Readathon at school, so he
knew about it. Ron was still in the
army, and I didn’t discuss it with him,
because it was my problem.”
During that period, Terri found a
coping mechanism that still serves
her well. “I keep a journal. I don’t
burden the family. I write down
how I’m feeling, and it’s between
me and my journal.”
Terri and Ron Laurence
enjoy riding the trike.
At the time she was diagnosed,
Terri was working in catering, but in
1990, she took a position in a primary
school as an ‘integration aide’, helping
students who had physical and
emotional problems.
“Those children were inspiring,” she
says. “When I felt sorry for myself, I’d
think of the boy who was legally blind
and yet got on a bike and rode it.”
Eventually, symptoms such as
fatigue took their toll, and Terri gave up
paid work and took voluntary positions.
Once a week for several years, she
helped on a mini-bus for people who
had a disability. She also volunteered at
Watsonia, the MS accommodation and
respite facility. “For a few years, I took
people with MS to their appointments.
I felt needed, and I enjoyed helping
someone. I never let on I had MS,
because compared with me, they were
in a much worse condition.”
Since 1996, Terri has been using
a walking stick, but in recent years,
her mobility has deteriorated and
she now relies on a walking frame. In
2012, her neurologist said her MS had
developed into secondary progressive.
“My memory’s going, and that’s really
frustrating. Physically, there are things
I can’t do any more. I sent my driver’s
licence back, because it was too much
of a temptation.”
After decades of being independent,
Terri now relies on Ron, who’s become
her carer. Ron says he worked hard at
encouraging Terri to send her story to
Intouch. It encompassed their recent
4,250-kilometre, 17-day journey on
a trike, travelling from Whittlesea to
Maryborough, in Queensland. “Terri’s a
quiet person who’s done a heap
of volunteer work,” Ron says. “She
prefers to remain in the background
as a quiet achiever.”
“I love the trike,” Terri adds. “We
meet so many people. Yesterday, we
went to Seymour, and no matter where
we go, whenever a car passes, we get
the thumbs-up. My advice is ‘Get on
with life; don’t sit around thinking about
what you can’t do; keep on going, and
be part of the community.’” n
Would you like to share your story with other people living with MS?
Call the editor on (02) 8484 1316 or email [email protected]
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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.
Can you tell me
about the latest oral
drugs for MS that are
available in Australia?
– Daniel, NSW
Thinkstock/Jupiterimages
The latest oral drugs on the market are
teriflunomide (brand name Aubagio)
and BG-12 (brand name Tecfidera).
Teriflunomide has been approved by
the Therapeutic Goods Administration
(TGA) and is available in Australia under a Product
Familiarisation Program. The Pharmaceutical Benefits
Advisory Committee (PBAC) considered the drug at
the committee’s July meeting, for listing under the
Pharmaceutical Benefits Scheme (PBS). BG-12,
meanwhile, was approved by the TGA in July and is
also being considered by the PBAC. At the time of
writing, the PBAC’s recommendations weren’t known.
In clinical trials, both of these oral MS medications have
been shown to lead to a reduction in relapse rates and a
slowing of the rate of disability progression in people who
have Relapsing–remitting MS (RRMS).
When the PBAC members are making
recommendations, they’re required to consider a
number of factors, including the treatment’s clinical
efficacy and cost effectiveness relative to other medicines,
as well as a new listing’s cost to the government.
The Federal Government then considers the PBAC’s
recommendations, for final approval.
Teriflunomide
This drug belongs to a class of medications called
pyrimidine synthesis inhibitors. It’s in the form of a filmcoated tablet that’s taken daily by mouth. It acts by
interrupting the life cycle of specific types of white blood
cell, called lymphocytes. In MS, these small lymphocyte
cells have a role in destroying myelin, the protective sheath
that surrounds nerve fibres and is an aid in efficient flowing
of nerve signals or messages to and from the brain and
various parts of the body.
Teriflunomide works by causing a reduction in
production of an enzyme – a type of protein – that
lymphocytes require in order to divide and mature. The
number of lymphocytes circulating in the blood and
reaching the central nervous system is thereby reduced,
and in turn, damage to the nerve cells in the brain and
spinal cord is reduced.
The reported side effects of the drug’s use include
nausea, abnormal liver test results, diarrhoea, and
hair thinning or loss.
Only rarely, some people develop problems related to
their liver, skin or blood; increased blood pressure; or pain.
Based on animal-study results, teriflunomide can cause
birth defects if it’s used during pregnancy. It shouldn’t
be taken by pregnant women or women who are of
childbearing age and aren’t using effective contraception.
BG-12
Taken twice daily as a capsule, this drug is a compound
called dimethyl fumarate, and has both anti-inflammatory
and neuro-protective effects. In Europe, it’s been used
as a treatment for psoriasis for many years. In two recent
Phase III clinical trials, relapses were shown to be reduced
by at least 50 per cent, and disability progression in RRMS
patients was shown to be slower compared with that in
patients who were given a placebo. MRI scans showed,
new lesions were also reduced compared with the
effects of another medication, glatiramer acetate.
These two Phase III trials have been extended so
researchers can examine the drug’s long-term effect
on relapses and disability progression.
Although BG-12’s mechanism of action isn’t fully
understood, the drug is thought to modulate the immune
system and protect it by way of a molecule called Nrf-2.
When the Nrf-2 pathway is activated, the neurons are
defended against death caused by oxidative stress, the
blood–brain barrier is protected, and maintenance of
myelin integrity is supported. The side effects can include
flushing and feeling hot; headaches; and gastrointestinal
upset such as diarrhoea, nausea and abdominal pain. Seek
medical advice for use during pregnancy. n
MS Australia – ACT/NSW/VIC does not recommend
any specific disease-modifying treatment. Please
consult your neurologist.
This article has been reviewed by Dr Lisa Melton, Research
Development Manager, MS Research Australia.
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MS and employment
Strategies
for work
When a person is diagnosed with
MS, he or she will worry about a lot
of things, not the least of which is
whether they will keep their job.
But if they have help and a plan,
they might be able to remain
in the workforce for years.
Work gives us more than an income − we develop our
skills, enjoy social contact, stay active, and have structure
and routine in our days. We can also gain immense
satisfaction as we reach the goals we’ve set for ourselves,
finish projects, or overcome challenges. In addition, work
can be an essential element in how we view ourselves,
because through it we can gain status and shape our
self-esteem and self-confidence.
For many people, learning that they have MS can
mean that their job is threatened; in fact, even if their
manager or employer is an understanding person, their
long-term employment can be at risk because of the
disease’s unpredictable nature.
According to the results of the Australian MS Longitudinal
Study, 90 per cent of people who have been diagnosed with
MS either are employed at the time of the diagnosis or have
a history of being employed and experienced in work; in fact,
many people are in the period of their life in which they’re
building a career and family and paying off a home loan.
As Stephen Jolly, who’s Manager, Employment Support
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Service (ESS), MS Australia − ACT/NSW/VIC, points out, the
barriers that diagnosed people face in gaining or maintaining
employment aren’t due to a lack of skills or work experience.
“The barriers are caused by the condition,” he says. “Some
50–80 per cent of people who have MS leave full-time
employment within 10 years of being diagnosed, despite the
fact that most of them have a positive work history at the
time of the diagnosis and are typically in a highly skilled job.
Addressing the barriers to employment that are due to the
effect of MS symptoms is the key to supporting people who
have MS to keep their job and remain employed.”
MS Australia − ACT/NSW/VIC acknowledges that
employment is a major concern for people who are living
with MS, and set out to help. As a result of the changes that
were made to government funding in March 2010, the
ESS in Victoria was able to expand significantly. “We’re the
only specialist employment-support service in Australia that’s
working exclusively for people who have MS,” Stephen
says. “Mostly, we support people who are concerned about
keeping their job. Since we’ve had the ability to expand the
service, we’ve helped more than 350 Victorians either gain
employment or remain employed.”
In March 2013, MS Australia − ACT/NSW/VIC was
accepted as a Job Futures member, whereby the
organisation was able to continue the ESS program. Job
Futures is an Australian Government initiative and is one of
Australia’s largest employment-service providers. Now, as
a Job Futures member, the ESS is planning to expand the
program into NSW. “We’ll start in the Sydney metropolitan
area, but we hope to extend the service to the wider regions
and the ACT,” Stephen explains.
Thinkstock/Digital Vision
Help with symptoms
Meanwhile, according to Joanne Airey, who’s Senior
Employment Support Consultant, Employment Support
Service, MS Australia − ACT/NSW/VIC, a person who has
MS can do a lot in order to remain employed.
Symptoms that can cause difficulty at the workplace
include fatigue, optic neuritis (visual difficulties), having
problems walking or standing for extended periods,
needing to go to the toilet more often, maintaining
concentration, and remembering things.
“If a symptom is affecting the person’s work, we can
do an assessment to establish strategies and decide on
the equipment the person might find useful so he or she
can find it easier to stay working. We can use funding from
Job Access to buy the aids and equipment required. Through
the progam, we’re also able to subsidise some services
or therapies so people can better manage their symptoms
and ultimately do their job.”
Joanne says the ESS can also arrange for a personal
carer to help via the Work Based Personal Assistance
program, from which the person is provided with help for
up to 10 hours a week so he or she can remain working.
“For example, one man who used a wheelchair needed help
getting to and from his car.”
This type of help can be useful for not only ongoing
assistance but while the person with MS is recovering from
a relapse. Joanne warns that the time immediately following
the diagnosis or during a relapse can be when people are
tempted to make decisions about their work. “Any decision to
change work hours or leave work should be an informed one,
and no one should leave work without seeking advice.”
A professional such as an occupational therapist, a
physiotherapist, a social worker or an MS nurse can suggest
strategies for managing your symptoms. “Most people
with MS have no idea of the range of adaptive equipment
that’s available, such as different styles of keyboard, visual
equipment and mobility aids,” Joanne says.
Another cause for concern is whether you should tell your
employer you have MS. The choice is yours, unless your
symptoms constitute an ‘occupational health and safety’ risk.
For example, if your work involves operating equipment
and your symptoms entail a risk to you or anyone else,
you’re required to disclose you have MS. There are
also some government departments that require you to
disclose health conditions such as MS.
“About 50 per cent of the people I’ve worked with haven’t
disclosed,” Joanne says. “For some people, the right time to
tell their employer is when the MS begins to have an impact
at work. It could be that they’re slurring their speech and
having trouble remembering things, so that people think they
have an alcohol problem.”
Regardless of why you’ve decided to disclose, you don’t
have to deal with the situation alone: a representative of
MS Australia − ACT/NSW/VIC can attend the meeting, or
you can take your union representative along if he or she
understands the impact of MS. You can also ask your GP or
Name: Rebecca Wood
Age: 36
Employed: Business Manager and Audiologist
with Bernafon Australia
Lives: Melbourne
Diagnosed with MS: 2010
When I was diagnosed, I was managing a large
audiology practice. Soon after, I decided to switch jobs
and to tell my new employer about my MS, because
I needed his understanding. My symptoms include
transient numbness and tingling, fatigue, and short-term
memory loss. I work full time, and about 18 months ago,
I took 12 weeks of maternity leave to have our first child,
and then returned to work.
In October 2012, a friend who has MS suggested I
phone the MS Employment Support Service. I didn’t call
immediately, but when I did, the ESS consultant came
to my house and made some terrific suggestions. As a
result, I now use a Livescribe digital pen during meetings.
It’s a digital pen that captures audio and synchronises
with what I write. I now find it easier to concentrate and
contribute to the discussion, because I don’t need to
take extensive notes. The ESS also found funding for an
iPad, so I no longer lug a large laptop around – I just pop
the pen and iPad into my handbag.
During the consultant’s visit, she noticed I worked at
my kitchen table. She said the set-up wasn’t optimal
for posture so she organised a new desk, chair and
footrest. Because heat can affect my fatigue, she also
had an air conditioner installed in my home office. Other
improvements included a Therapod backrest for my
car, to improve my posture and relieve aches and pains
when I’m driving between clients. In order to relieve
muscle stiffness, I have my exercise subsidised, so I
now do taekwondo twice a week. In addition, someone
from a cleaning service comes fortnightly, which means I
don’t have to do any heavy lifting.
I have career aspirations, and I’m hoping I can move
upwards, so I’m working hard to make sure I’m the
logical choice. The consultant has empowered me to
do things for myself. Best of all, I’m up to date with my
work, which means I can spend my weekends with my
husband and daughter. My life’s changed for the better!
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MS and employment
neurologist to write a letter to your employer in order to
explain your condition.
“Disclosure can sometimes lead to a sense of relief,
because the person with MS is able to ask for help, for
example to have more flexible working conditions or have
adjustments made to his or her equipment such as by
requesting a larger computer screen. We can access
the equipment in a way so there’s no cost to you or your
employer. If working from home becomes an option, we also
have funds available for equipping a home office.”
Your confidence can receive a boost when you realise that
your employer will gain huge benefits from maintaining you
as a productive employee. Employers find it easier to make
adjustments for a valued employee than face the risk and
expense involved in recruiting someone new.
You can also request assistance and advice from the
ESS about strategies to use both at the workplace and
outside it in order to help yourself stay on at work. For
example, fatigue is one of the biggest causes of early
retirement, but there are many ways in which to deal with
it, such as taking regular breaks, modifying your hours,
exercising regularly, managing heat, and using a cleaner
and/or gardener at home so you can reduce your level of
fatigue and help yourself continue working.
Name: Rob Mackay
Age: 40
Employed: Project Manager, Kane Constructions
Lives: Melbourne
I was diagnosed when I was 31. I’d had trouble running, but
I’d put off going to the doctor, and when I was in Canada
skiing, I kept falling over and couldn’t walk very far. I was
already working for Kane Constructions, so I kept them in
the loop while I was being diagnosed.
Initially, my MS didn’t have an impact on my work,
but I spend a lot of time walking around large building
sites, and my strength started to wane. I have Primary
Progressive MS, and as I got worse, my manager
modified my role so I don’t have to do as much walking
around. I also do some work from home.
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Time to change?
If the day comes that you need to change your employment
or scale it back, you’ll need to seek advice and make informed
decisions. If you have a good relationship with your employer
and remain open to discussing your situation, you might be
able to reduce your hours, change your job description, work
from home or become self-employed.
Before you take the final step, however, you need to seek
advice and investigate the longer-term impact your decision
might have on your entitlements, such as superannuation,
insurance and Centrelink payments.
“Everybody’s different, and every journey with MS is
different,” Joanne asserts. “If you’re in the workforce or
you want to return to it, contact MS Connect as the starting
point; you’ll be put in contact with us, and we’ll meet you
wherever you want – at an MS-organisation office, your
home, your workplace or a café. You might find it helpful
just to talk to us, and you mightn’t even require a workplace
assessment. Often, the simplest things can be the reason
that people’s life is made easier and they’re able to keep
working. If the person requires assistance dealing with larger
problems, we can help them get the right equipment or
treatment and can empower them to handle their symptoms
and stay in the workforce for longer.”
At the end of 2011, I had a Baclofen pump implant
placed at the base of my spine, and I got an infection that
put me in a wheelchair. I couldn’t drive, and driving’s a big
part of my work. I contacted the Employment Support
Service, and they were great. They organised hand controls
for my car, a course about how to use them, and the driving
test. They also provided a wheelchair hoist.
Because fatigue is a problem, they rearranged my
home office so it worked better, provided storage, and
improved the lighting. I have to wear business shirts, which
I’d been finding difficult to iron due to the heat and fatigue,
so they arranged for the ironing to be done. I’m also
married, with three young children, so rather than increase
my fatigue trying to help my wife, the ESS organised for a
cleaner to come in.
After I healed from the infection, I returned to using
crutches at work, or a three-wheel scooter. I had a
few falls on site, so the ESS arranged for me to trial a
manual wheelchair that had a new power-assist device,
and the wheelchair can power up steep hills, through
carpet and over grass. We’re waiting to see whether the
ESS can secure funding for it.
The ESS is constantly there for me. Without their help, I’d
find working extremely difficult.
My company has also been supportive, modifying the
role to suit my ability and giving me time to do what I need
to do. It’s a progressive company that also makes financial
contributions to MS research.
MS and employment
Employment service expands
MS Australia − ACT/NSW/VIC offers people who
have MS the opportunity to either stay in employment or
return to the workforce via our MS Employment Support
Service (ESS) program.
Until recently, the only people our organisation was
able to assist were people living in Victoria; however,
we’re now expanding the service into Sydney and we
will eventually be making it available in the ACT and in
regional and rural areas.
Drawing on staff expertise and knowledge of the
effects of MS, we can use the ESS to help manage
symptoms at the workplace on an ongoing and regular
basis. We can also support workers when they tell their
employer about their MS, and can provide employers with
MS-specific advice and education.
If you’re not working but you’d like support in order to
seek employment, we might be able to use the ESS to
assist you by helping you identify suitable employment,
apply for jobs, write a resumé and practise your
interview technique.
The ESS is a member of Job Futures, one of
Australia’s largest employment service providers.
Job Futures is the only national network of
community-based and not-for-profit organisations
providing employment, training and related services.
To contact the MS Employment Support Service, call
MS Connect on 1800 042 138.
For more information about Job Futures, go to
www.jobfutures.com.au/
Disclose or not?
Will I lose my job? Will I be able to
work at all? These are two of the
worries that hit you when you’re
first diagnosed with MS.
Name: Vanessa Holt
Age: 50
Employed: Part-time TAFE teacher
Lives: Sydney
It never occurred to me to keep my diagnosis a secret; it
happened too fast to even think about. I went totally blind in
my right eye in the space of a week, and had to miss a class
to see the ophthalmologist – so I had to let my boss know.
My boss joined the small gang of people who were deeply
worried. When I found out I had MS, I told him; I was just
relieved I didn’t have a brain tumour. I knew next to nothing
about MS, and the lack of knowledge was beneficial at the
time. I changed my diet to eliminate saturated fat,
and took up vigorous exercise. I also meditate; take a
range of vitamins, including B12, and fish oil; and make
sure I get a bit of sun regularly. I stay well, and work hasn’t
been a problem . . . yet.
The MS is always there – like the sword of Damocles.
Teaching’s been a great job for me: I can’t sit for too long; I
can’t stand for too long – when you teach, you can bounce
up and down at will. I’ll tell my students why I need to stand
back from them during their ‘smoke break’: the theory is that
smoke is toxic for people who have MS. Quite often,
they’re fascinated and they want to know more. Every
now and then, one of them has a parent or sibling who
has MS, and disclosure can be a bonding experience. I’ve
had freelance writing jobs during which I didn’t disclose my
MS status, because it’s as irrelevant as discussing my sex
life – still, if people in the office want to know why I won’t eat
the chocolate cake, I’ll tell them.
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MS and employment
Name: Rhonda Fong
Age: 50
Employed: Long-haul flight attendant
Lives: Sydney
From the moment I was diagnosed, my symptoms
worsened. I had trouble walking up stairs, and my right
leg would drag when I was fatigued. I’d been in my job
for 25 years, and because I was fearful, I wasn’t going to
disclose my condition. That changed when I sat in on an
MS teleconference about work and employment, with a
representative from Maurice Blackburn Lawyers. He advised
me to disclose because my job was safety related. I thought,
That’s it: I’m going to lose my job.
Since my diagnosis, I’d been living on my long-service and
annual leave so I’d have time to come to terms with having
MS. I rang my manager, who was supportive and came back
with an offer for me to work on the ground, doing light duties.
While I was doing that work, I was able to gauge how I was
physically. I could see an improvement, and needed to know
whether or not I could return to the job I loved. I met with the
company’s doctor, who cleared me to fly. The airline asked
me for a return-to-work plan, and offered options such as
‘part time’, ‘domestic’ and ‘supernumerary’, which means
you fly with a buddy for support – I was lucky enough to fly
with my sister, who’s also a flight attendant.
On my first day back, my manager was there to
meet me, and I got confidence from the support of my
colleagues – they watched out for me and helped me with
little things; for example, they told me to sit when I looked
tired, or got my bags at the end of the trip. Later, thinking of
my future, my manager offered me a two-month customercare position. I jumped at the opportunity to broaden my
experience. My manager gave me this chance so I could see
I can do things other than flying. The airline could’ve given me
a redundancy; I’m so grateful to be still working with them.
– As told to Vanessa Holt n
Manage your work relationships
If you tell your employer you have MS, you’re better able
to ask for help if you require it. Although some people will
be concerned for your wellbeing and will want to help you,
others might resent any adjustments that are made in
order to accommodate you. Therefore, it’s important you
manage your relationship with your colleagues carefully.
Birgit O’Sheedy, who’s a Clinical Psychologist from
Waves of Life Psychology and who works with people who
have MS, says clients often discuss how much they should
reveal at work. “Assess the positive and negative aspects
of informing your co-workers,” she advises. “Ask yourself
whether it’d be easier to manage your MS symptoms at
work if your colleagues were aware of your MS.”
Birgit says it’s worthwhile to cultivate your relationships.
“If you have a social connection with colleagues, you
have a supportive environment in which you can ask for
help.” This goodwill can be useful if you need to ask for a
deadline extension or to take more breaks. “Show interest
in your co-workers’ life without being intrusive; for example,
ask about their weekend or how their kids are doing.
Be an active listener, and pay attention.”
If you need to ask for help, Birgit suggests you
follow these guidelines:
• Be clear about what help you require, and consider
writing the request down so you can express it as
confidently as possible.
• Approach the person who’s most qualified to help you,
and make the request at a time that suits him or her.
• Explain clearly and politely what you need help with.
You could also give the person a brief explanation
of why you require help. Remember that the person
mightn’t know much about MS.
• If you feel uncomfortable asking for help, remember
that if you’re assertive, you’ll minimise the stress you
feel and any flow-on effect it might have on people.
• If the people at your workplace aren’t open to helping
you or you struggle with communicating assertively,
seek support from a counsellor or psychologist.
Useful resources
MS Connect: Call 1800 042 138 or email [email protected] or [email protected]
Financial Planning Association of Australia: Call 1300 626 393, or search the association’s online directory
at www.fpa.asn.au to find a qualified financial advisor who’s located near you.
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Author Oliver Phommavanh (left)
joined MS Ambassador Stephen
Papadopoulos and Pymble Ladies’
College students in a webcast event.
Marilyn and
Ken Collins
Our story
Still time to raise funds
Last week, thousands of students
and adults closed the final pages on
the 34th MS Readathon. Throughout
August, these community-minded
individuals counted books, magazines,
e-readers, newspapers and school
readers towards their reading goals, and
they’re now collecting and returning the
sponsorship funds they’ve raised.
This year, many students have taken
the lead in encouraging their peers to
get involved in this iconic fundraiser.
Kayla Sandry, 14, first took part in the
MS Readathon in 2008, and to date
she has raised more than $30,000.
“Although I’ve encouraged students
at my school over the years,” Kayla
says, “this year I wanted to visit
other schools and share information
about MS and the MS Readathon,
and show how easy it is to get involved
and help people.”
In June and July, several Penguin
Books Australia authors joined forces
with these inspiring students as well as
our team of school-volunteer presenters
and MS Ambassadors in order to
motivate teachers and students to get
involved. They spoke about the
many benefits of the MS Readathon,
such as the importance of reading,
the magic of books, raising funds,
and helping other people.
Also, in July, a film crew descended
on Sydney’s Pymble Ladies’ College
(PLC) to facilitate a live streaming of a
virtual school presentation into hundreds
of schools throughout the ACT, NSW,
Queensland and Victoria, via webcast.
The event was hosted by humorous
Penguin author Oliver Phommavanh,
and included a talk delivered by MS
Ambassador Stephen Papadopoulos
and PLC students, who encouraged
people to make a difference to other
people’s lives simply by reading.
Our goal is to raise $500,000, and
you can still collect donations or ask
friends and family members to sponsor
you, until 31 October. Don’t forget that
everyone younger than 18 who raises
more than $40 will receive a reading
reward as a thankyou. Log on to www.
msreadathon.org.au to see the rewards
that are available this year – as well as
some great fundraising tips! n
Ken and Marilyn Collins have been
married for 39 years. Ken is vice
president of the Western Plains
MS Branch, and together they’re
committed to helping rural NSW
people who are living with MS.
Following Ken’s MS diagnosis,
in 2005, the couple phoned
MS Australia – ACT/NSW/VIC to
obtain information, because
living in the country, they had
limited access to specialists and
specialised medical services.
As a result of that phone call, Ken
and Marilyn now feel they’re part of
the wider MS family. The support
they’ve received from MS Australia
– ACT/NSW/VIC was the fuel for
their desire to build a strong support
network for Western Plains residents
who are living with MS.
After having a discussion with
the NSW Planned Giving Officer,
they were encouraged to consider
leaving a bequest in order to help
other people who have MS. To
anyone who’s considering making
a bequest, Ken says, “Please don’t
hesitate to become a benefactor.
Your contribution will be gratefully
received and put to good use by
MS Australia – ACT/NSW/VIC to
help both people who are affected
by this disease and people who are
yet to be diagnosed.”
To order a free copy of our
booklet Your Future in Your Hands,
which contains information about the
importance of having an up-to-date
will, and how to leave a bequest,
please either call Donna Bradley
(Victoria) or Jacqui Sumner (ACT and
NSW) on 1800 443 867 or email
[email protected] n
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EVENTS
INFORMATION SESSIONS
Registration is essential, because programs
will run only if minimum numbers are
achieved. For bookings or more information,
please call 1800 042 138 or email
[email protected]
Learn about MS
Led by an MS nurse, this session is suited to
people who’ve been recently diagnosed and
people who want to meet other people and
learn about MS and our services.
2 November, 1pm – 4pm Gloria McKerrow House,
Deakin, ACT
Nutrition for Health and Wellbeing
Led by Nutrition Australia, this information session is
suited to people who want to know more about nutrition
and practical cooking. It’s followed by a two-session
Practical Cooking program, listed below.
12 November, 5.30pm – 6.30pm Gloria McKerrow
House, Deakin, ACT
Practical Cooking
Join us for these two sessions to be held at
Nutrition Australia, Unit 5, 70 McLaurin Crescent,
Chifley, ACT. You’ll have the opportunity to share
the meal that has been prepared.
19 November, 5.30pm – 7.30pm
26 November, 5.30pm – 7.30pm
PHYSICAL-ACTIVITY GROUPS
Yoga for MS
Wednesdays, 5.45pm – 7.15pm
Gloria McKerrow House, Deakin, ACT
Cost: $17 per session. Phone Ruth on 0401 288 921.
MS Exercise Class
Wednesdays, 12 noon
6X Fitness Studio, 171 Maroubra Road, Maroubra
Call Shaun Hockley on (02) 8084 0880 for details.
Iyengar Yoga for MS
Tuesdays in Petersham; Wednesdays in Lidcombe
Cost: $10 per class.
Call Tracy Martinuz on (02) 9646 0692.
Progress in MS Research Public Lecture
MS Research Australia (MSRA) invites you to attend a public lecture to
hear from research experts on the latest findings in multiple sclerosis
research, as well as an overview of research discussions from the
Progress in MS Research Scientific Conference.
16 November, 9.30am – 12 noon Kerry Packer Education Centre
at Royal Prince Alfred Hospital, John Hopkins Drive, off Missenden
Road, Camperdown
This public lecture is FREE of charge, however, spaces are limited so please
register online at www.msra.org.au/public-lecture to secure your seat.
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Get on your bike
Join in the fun on Sunday, 3 November and be
among the thousands of cyclists who participate
in the 2013 MS Sydney to the Gong Bike Ride
in order to raise $4.5 million for people who are
living with multiple sclerosis.
“The MS ‘Gong’ ride is the largest massparticipation event in the NSW cycling calendar,”
says Karl Kinsella, Events Development Manager,
MS Australia – ACT/NSW/VIC. “Money raised by
Gong-ride participants will be spent on providing
essential day-to-day assistance and support for
people living with MS.”
Cyclists can choose to ride either the
90-kilometre course from Sydney Park in
St Peters or a shorter, 58-kilometre course from
Engadine. Either way, all riders will experience
the spectacular scenery as they wheel it through
the Royal National Park, over the Sea Cliff Bridge
and along the coast road to Wollongong.
“Rider numbers are capped at 10,000 entries,
so we encourage people to register as soon
as possible,” Karl says. “The entry fee covers
only the significant cost of staging the event,
so riders are encouraged to commit to
fundraising a minimum of $250.”
How you can get involved
• If you’re unable to ride, why not ask a family
member, friend or colleague to ride on your
behalf? You can offer to go online to help
set up the team, rally support, and perhaps
coordinate some local fundraising and
facilitate a contribution to the team’s total
in that way.
• Go online to support a team by making a
donation and/or alerting your family members,
friends and colleagues to this good cause.
Every cent counts!
• Have you considered volunteering? It can be
a fun day, so give us a call to talk about the
opportunities we have available.
To sign up to ride, donate or volunteer, visit
www.msgongride.org.au
Thinkstock/Fuse/luckyraccoon
ACT & NSW
For bookings or more information, email [email protected] or call 1800 042 138.
Thinkstock/Fuse/luckyraccoon
VIC
For bookings or more information, email [email protected] or call 1800 042 138.
EVENTS
INFORMATION SESSIONS
CHAT ROOMS
Learn about MS
Suited to people newly diagnosed and to people
who want to meet other people and learn more
about MS and our services.
16 November, 10am – 1pm Footscray (TBC)
Available to clients and their family members who
have internet access; throughout all regions.
For registration instructions, please call our
Education Coordinator on (02) 9646 0657.
Working with MS
Explore your rights and responsibilities at work, as well
as superannuation, insurance, and financial matters.
16 October, 6pm – 9pm Blackburn
Managing Fatigue and Coping with the Heat
An overview of MS fatigue and how to manage this
invisible symptom. Managing heat intolerance will also
be part of the discussion.
6 September, 11am – 1pm Geelong
Sleep Well – NEW!
Explore the reasons that people with MS have
difficulty sleeping, and discuss some strategies
for improving your sleep.
30 October, 12 noon Bairnsdale; hosted by the
Bairnsdale Peer Support Group
Medication Update
The new and emerging medications will be discussed
by MS Australia – ACT/NSW/VIC nurses.
9 September, 10am Benalla; hosted by the
Benalla Peer Support Group
2 October, 5.30pm Geelong
19 November, 10am Shepparton
Mobility Options
If you’re considering getting a mobility aid, come
and talk about various options with our occupational
therapists as well as with other people who have MS.
20 September, 10am – 11am
In the Kitchen
If you’re having difficulty cooking, our occupational
therapists will provide information about equipment.
23 October, 10am – 11am
Reading Options
If you’re having trouble reading, learn about other
options such as audio-books and e-books.
27 November, 10am – 11am
TELECONFERENCES
Available to clients and their family
members; throughout all regions. To
register, please call 1800 042 138.
Managing Fatigue
In this two-part teleconference series, you learn how to
manage MS-related fatigue.
2 and 16 October, 10.30am – 12 noon
13 and 27 November, 10.30am – 12 noon
Conversation with Centrelink
Hosted by the following Peer Support Group.
Join one of Centrelink’s officers to discuss
pensions and entitlements.
8 November, 10am – 12 noon Geelong
Continence Care in MS
Learn about bladder and bowel problems: causes,
assessment, and treatment options.
17 September, 6.30pm – 8.00pm
15 October, 10.30am – 12 noon
19 November, 10.30am – 12 noon
Continence Care in MS
Learn about bladder and bowel problems: the causes,
assessment, and treatment options.
16 October, 1.30pm Blackburn; hosted by the
Blackburn Discussion Group
Working with MS
(NSW and ACT only)
Explore your rights and responsibilities at work, as well
as superannuation, insurance, and financial matters.
17 October, 7pm – 8.30pm
Role of an Occupational Therapist
A local OT will speak to the Swan Hill Peer
Support Group.
7 October, 11am Swan Hill
Research Update
A representative from the Monash Medical Centre MS
Clinic will address the Mornington Peer Support Group.
12 November, 11am Mornington
Wills and Estates
A specialist in wills and estates explains the importance
of wills, Power of Attorney and Guardianship.
24 September, 10.30am Blackburn
WELLNESS EVENTS
Explore ideas and strategies for living well with MS. You
will receive an invitation via either mail or email.
View programs
Recordings of some education programs are
now available via the MS Australia website:
www.mssociety.org.au/education-programs.asp
MS Family Wellness Day 6 October Mornington
Aimed at families, couples and singles, the program
includes a guest speaker and wellness activities such
as yoga, tai chi and massage. Lunch will be provided.
Contact us to register your interest.
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21
C
AR
ER
S
FAMILY & CARERS
Limited work options
Carers face all kinds of challenges, some of which can
seem impossible to deal with. Work is one of them.
Raising awareness
Sam O’Halloran organised ‘Team MS Mafia’, a 12-strong
group of family and friends, to walk in the Sydney MS Walk
and Fun Run as a thankyou for the support she’s received
from MS Australia – ACT/NSW/VIC.
After some 15 years of having his MS symptoms
misdiagnosed, Sam’s husband Aaron was finally diagnosed
in December 2012, just before he turned 40. However, Aaron
had an undiagnosed MS relapse which coincided with spinal
surgery in June 2012. “I became his full-time carer then,”
Sam says. “It’s been a bumpy ride. I’m new to caring; I joined
the Carer Peer Support Group on Facebook, and I’ve learnt a
lot. I wanted to give back.”
For 13 years, Sam has been raising funds for causes
that are close to her heart, including breast cancer, and
will continue to do so. But now she has also switched her
attention to raising funds for MS. Sam and Aaron’s 13-yearold son Jacob and some of Sam’s old high-school friends
were among the members of Team MS Mafia. The team
raised about $4,000 from the Walk and Fun Run.
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be provided. It’s best suited to taking time out to do the
shopping or have a coffee.”
Housework is another concern. If the carer is busy at work,
will the respite carer do the chores around the house? “The
answer is probably no,” Brenda says. “This means that for
carers, life is made impossible because they have to juggle
their caring work, paid work and housework.”
Carers were also concerned about the impact that paid
work would have on their entitlements. If you’re concerned
about that aspect, Brenda recommends you talk to either a
Centrelink staff member or your Community Support Worker.
If you require more support, go to the Facebook page and
ask the question there, because your peers might know the
answer. “In the group,” she says, “it’s terrific to be able to
share problems and be offered solutions.”
If you’re interested in improving your work skills so you
can apply for jobs, Brenda advises you to look into what your
municipal or shire council might have on offer. “Most councils
provide computer courses and other skills-based courses,
and you’re able to get respite so you can attend them.” n
For information about respite, go to:
NSW www.workingcarers.org.au/carer-fact-sheets/99support-for-carers/106-respite-care
Victoria www.carersvictoria.org.au/advice/services-supports/
respite-carer-support/
To connect with carers on Facebook, go to:
www.facebook.com/groups/413493135353497/
Front row, from left: Sam O’Halloran stands
next to her son Jacob, surrounded by some
of the members of Team MS Mafia.
Also, Team MS Mafia was featured in Sam’s local
newspaper, the Hornsby Advocate. “It’s important to raise
awareness about MS,” she says. “If we’d known more,
Aaron might’ve been correctly diagnosed earlier.” n
Thinkstock/lwebphotographeer
No use sugar coating it: combining a career with caring for a
family member is very difficult, according to Brenda Fisher, a
Peer Support Volunteer for the Carers Working Party.
Because ‘MS and employment’ is the theme of this issue
of Intouch, Brenda went on to Facebook to ask the members
of the Carer Peer Support Group for their input. Their
response was swift and strong. “It’s such a difficult
issue – one that causes a lot of stress,” Brenda says.
One of the most challenging aspects is the Catch 22
situation in which the carer has to obtain respite so he or she
can have the necessary time away from home in order to go
to work. “To get respite, you generally need to know when
you require it. However, you won’t know that until you get a
job – so the dilemma is: what do you do first? In addition, it’s
impossible to get enough ‘attendant carers’ so you can take
a full-time position, which means it has to be part time.”
Brenda points out that a significant amount of part-time
work is offered for either the morning or the evening and
therefore coincides with the most demanding times of day:
the ‘peak periods’ for the carer’s role at home.
As one male carer put it, “I was unable to obtain enough
respite hours for me to stay in full-time employment, and
last year, I came to the conclusion I had to retire. After some
months, I returned as a casual. It’s mostly work on weekends,
if required, so it doesn’t interfere with all the appointments we
have to attend throughout the week.”
Brenda adds, “Sure, respite is available for carers via
various agencies, but it’s not the solution if you want to
enter the workforce, because not enough hours can
MS COMMUNITY
Community support
Darcy
McCann
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 people have
rallied together to help make a difference.
Epic cycles for MS
Fishing fundraiser
Inspired by her partner Bruce,
who’s been living with MS for 20
years, Marg Hayes joined Malcolm
McKinnon and John Kerby on a
fundraising adventure. On 6 April, the
trio began a 4,000-kilometre ride from
Falls Creek to Darwin, pulling their
supplies behind them on trailers!
An amazing 38 days later, they
completed their epic cycle having
raised $12,500 for people with MS.
About 100 people took part in
the second annual Family Fishing
Challenge, conducted by Rapala and
Discovery Holiday Parks and held at
Lake Jindabyne on 4–5 May. They
raised $2,850 for people with MS.
It was organised by Jindabyne
resident Steve Williamson. “I’ve been
running competitions for years,” Steve
says. “One of our young entrants,
Darcy McCann, was diagnosed with
MS last year, so we decided that the
money raised should go towards MS.”
TV personality Robert Paxavanos,
of Fishing Australia fame, made an
appearance, but a highlight was when
Darcy, 11, took out the Champion
Junior Angler category having landed
a 53-centimetre Brown Trout. Darcy
was accompanied by his father, Matt
McCann, and the McCann family also
won the Champion Family category.
Plans are in place for next year’s
event, to be held on the Anzac Day
weekend of 25–27April. “We had twice
as many entrants as we had last year,”
Steve says, “so we’re hoping for even
more in 2014, which means we’re
aiming to raise more money for MS.” n
Marg Hayes and
Malcolm McKinnon
arrive in Darwin.
Meanwhile, while Marg, Malcolm
and John were undertaking their ride,
Ralph and Peter Kiel were setting off
to ride 3,500 kilometres from Perth to
Ballarat, in memory of their mother,
who’d lived with MS for many years.
The ride took 25 days to complete, and
Ralph and Peter raised an incredible
$40,000 for people living with MS.
Thank you to these five inspiring,
and very fit, individuals! n
Create a fundraising event
You and your friends can make a difference.
If you’d like to help raise funds for people living with MS, call us for a chat.
It’s easy to get started.
Please contact your local Community Fundraising Officer:
ACT: Mirimba Kovner, (02) 6234 7030
NSW: Kerry Hill, (02) 8299 0134
Victoria: Gill DeCis, (03) 9845 2880
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MS COMMUNITY
Volunteers in action
How our dedicated volunteers are helping to
make a difference for people living with MS
Braving wild weather
Almost 400 volunteers throughout
Melbourne, Sydney and Canberra
were up early on Sunday, 2 June to
help at our MS Walk and Fun Run.
This event is our annual major
fundraiser and involves more than
11,400 participants. So far, more than
$1.7 million has been raised.
Unfortunately, a cold front swept
across south-eastern Australia on the
day, and with it, rain and wind that
were a threat to the participants’ spirit.
Thankfully, however, our volunteers
weren’t put off; they brought smiles
and enthusiasm to the role of delivering
yet another successful event.
In typical Melbourne style, three
seasons in one day were experienced
at Albert Park Lake: the day began
with rain but finished with beautiful
sunshine. Some 90 volunteers worked
a total of 500 hours to ensure that the
event ran smoothly. Also, because
of the record number of participants,
our volunteers were given new roles
and challenges, such as staffing
an additional drink station. All the
volunteers rose to the task, and
participants commented on how their
smiling faces made such a difference.
In Sydney, the weather was wet
but the participants and volunteers
braved the rain to make the event a
success. The crew of more than 220
volunteers contributed a total of more
than 800 hours. Some volunteers
were required to deal with course
adjustments whereas others worked
in conditions of flooding to ensure the
structures stayed safely on the ground.
Their enthusiasm and dedication were
appreciated by the participants.
An unexpected friendship
After having a brush with death, Allan
Pennicook was propelled to
volunteer, but he never expected
to make a close friendship.
Allan, 64, is a retired school teacher
and music administrator who lives
in Canberra. Six years ago, he felt a
pain in his back while playing tennis.
The pain intensified; an ambulance
was called; and when Allan regained
consciousness, he found himself in
hospital, having undergone heart
surgery, and learnt he’d been lucky to
survive. “I’d been knocking on heaven’s
door for seven minutes,” Allan says. “It
changed the way I look at life.”
Allan committed to taking care
of his health and giving back to his
community. As the drummer in a jazz
band, he regularly plays at charity
functions, but he now wanted to do
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something more personal. He saw
a job notice on Seek Volunteer for
someone to take a person who
had MS to the Australian Institute of
Sport swimming pool once a week.
“That’s how I met Stephen, in October
2012,” Allan explains.
Stephen Tsindos was diagnosed with
MS about 20 years ago, and now lives
in a nursing home. “I really admire his
positive attitude to his disability,” Allan
says. “We’re the same age, and we
share a love of music. We’ve become
great friends.”
Allan began by watching over
Stephen while Stephen was swimming,
but nowadays, the pair might go to
the movies, a café or one of Stephen’s
medical appointments.
“He’s come home for lunch a number
of times,” Allan says. “One of the
Rain couldn’t
dampen the
smiles.
In Canberra, 70 volunteers
committed more than 360 hours
over the weekend and faced wet
conditions with a smile and a
measure of grim determination. The
volunteers at the start site were asked
to react quickly when the volunteer
marquee had to be dismantled due
to high wind, and all of them rose
to the challenge. Many participants
commented on the smooth running of
the event and on the cheering sight of
MS volunteers along the course.
We thank our dedicated volunteers
for their hard work and smiles, and for
enhancing a great fundraising result. n
Allan Pennicook
volunteered to take
Stephen Tsindos to
the pool.
wonderful things about
our friendship is there are no
awkward moments between
us. From helping Stephen in and
out of the car to helping him dress,
I find that our friendship has an
easy calm to it. He acknowledges
the little things I do, and my
biggest reward is to share the
experience with him.” n
Volunteer opportunities
We are always looking for more volunteers, and here are some
opportunities we’re aiming to fill right now:
VICTORIA
l Volunteers are required for visits to
people who have MS throughout
Melbourne and other regions.
l Volunteers are required to
support the MS shops in Fairfield,
Daylesford, Malvern, Waverley
and Geelong.
Doug Talbert
International award
nominee
After volunteering as a masseur
for seven years, Doug Talbert
was nominated by MS Australia
for the 2013 Evelyn Nicholson
Award for International Caregiver,
organised by the MS International
Federation’s People with MS
Advisory Committee.
Although the award was won
by Maurice Maso, of Belguim,
who’s been caring for his wife
for 27 years, Doug was pleased
to have been nominated. He
estimates that over his years
of providing massages at MS
Metropolitan North, in Sydney,
he’s worked on about 1,000
people who have MS.
“I spent my career in finance
and law, so it’s great to do
something hands on,” he says.
“People come to me in pain, and
they really appreciate it when I
can help them. I find it rewarding.”
Doug was recommended for
the award by Joanne Tuckerman,
the receptionist at MS Australia
– ACT/NSW/VIC’s North Ryde
office. “You can see the difference
on clients’ faces when they leave
Doug’s treatment,” she says.
NSW–ACT
l If you have a green thumb, we
could use your help to tidy up the
garden at Gloria McKerrow House,
in Deakin, Canberra.
l Volunteers are being sought for
the new MS shop in Canberra’s
Tuggeranong area.
l Volunteers are required in the ACT
for visits to people who have MS.
l In the Carlingford area, in north-
western Sydney, a volunteer
is needed for home visits and
meal preparation.
l Volunteers are required for home
visits in Turramurra, which is a
northern-Sydney suburb, and in
Cattai, which is in The Hills Shire.
l Volunteers are needed for
helping with yoga classes at the
MS Studdy Centre, Lidcombe.
l In regional areas of NSW,
volunteers are required for
helping people who have MS to
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.
Calling for MS Ambassadors
We’re seeking expressions of interest from MS Australia – ACT/NSW/VIC clients
who’d like to become an MS Ambassador. In NSW and the ACT, a number
of vacancies exist for the right people to join the Ambassadors team in this
esteemed and dynamic program.
To find out more or to register interest, please call Stephen Papadopoulos on
(02) 9646 0600 or email [email protected]
Roll of Honour
We would like to thank the following
community members who helped raise
funds for MS over the past three months:
l Emily de Groot – sponsored haircut
l Laura Tangey and the Footie Gals –
Amphlett Cup
l The trio of Malcolm McKinnon,
Marg Hayes and John Kerby –
the Alps to the Tropics
bike ride
l Ralph and Peter Kiel – the Perth to
Ballarat bike ride
l Holy Script Primary School –
a fun run
l Our Lady of the Rosary Primary
School – Wear Red day
l Jen Straughen – a Mothers’
Day lunch
l Flemington RSL – a trivia night
l Sydney Grammar School – three
special events
l Mark Colman and Team Mudup4MS
– Tough Mudder
l Jill and Mike Budden – opened
their garden to the public
l The Australian Institute of Music – a
series of music concerts
l Chris Bayliff – competed in the
Tough Bloke Challenge
l Janette Campbell – a cookie
and muffin bake
l Tobie O’Shea-Anderton and Connor
Moore – the North Face
50 Kilometre ultra-marathon
l Himanshu Dua, Katherine Weeks,
David Torossian, Jillian Nalty,
Corinne Binat, Andrew Smith,
Ross Baker, Selena Barkley
and Peter Walsh – competed
in The Sydney Morning
Herald Half Marathon
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MS COMMUNITY
“You’re not alone”
Meghan McLean with
her husband Drew and
son William.
When she discovered that a friend also
had MS, Meghan McLean was inspired to
become a Peer Support Volunteer.
I’m 29 now, but I was 22 when I experienced my first
relapse – I had pins and needles in my fingers, hands and
arms, and they interfered with my ability to use those parts
of my body. It was three years before I had another episode,
and that time, my feet and legs were affected, and I was
officially diagnosed in 2009. During those three years, I did
some research into multiple sclerosis, and by the time it was
confirmed, I’d come to understand what the condition was a
bit more and I’d started to get my head around it, but I took a
fair while to really come to terms with it.
About a year after I was diagnosed, we had some friends
around for a barbecue, and a few days later, one of the
girls phoned me. She said she’d seen my MS medication
in the fridge and that she’d been diagnosed with MS three
years earlier. I was surprised to hear it: she was a young
professional and intensely private, and I was one of only a
handful of people she’d told. That was a powerful experience
for me. My friend and I were able to support each other, and
I realised how much turmoil people who are newly diagnosed
can be in, especially young women, who are already
dealing with all that life throws at us – evolving relationships,
flourishing careers and new families can be a huge challenge
for anyone, let alone when you’ve got MS in the mix as well.
Before I became pregnant, I began thinking about
volunteering to provide peer support, but I had to wait until
earlier this year to undergo the training. William is my first
child, and he was born in February. I’m on maternity leave
from my position as a language teacher at a high school,
and I’m hoping to return to work part time at the start of
the next school year.
Meanwhile, now that I’ve completed the Peer Support
Volunteer training, I’d like to be able to support other young
people who have MS. The training was a great experience. It
encompassed subjects such as communication and dealing
with conflict, and included lots of helpful tips and practical
advice, not to mention a lovely couple of days’ sharing
experiences and getting to know the other volunteers.
It’s great to know there’s support available and that you
can talk to someone, with some anonymity. I urge anyone
who’s newly diagnosed to seek peer support, because you’re
more able to process all that’s happening in your life. Even if
you speak to a Peer Support Volunteer once or twice only,
you’ll find it helpful to know you’re not alone. n
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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The Esperanza
group enjoys a
catch-up.
Support
group profile
Are there any other activities?
Sometimes we visit people in their home, and we’re planning
to go to the Uruguayan Social Club soon.
Mabel Castineira helped establish and later
re-form Sydney’s Esperanza Peer Support
Group for Spanish speakers. The group
members meet at the Casa Community
Service Centre, in Fairfield Heights.
How was the group established?
About six years ago, the MS organisation was looking for
people who spoke Spanish and had MS, and was put in
contact with me. I arrived from Uruguay in 1978, and I was
diagnosed in 2003, when I was 40, but I had symptoms
before that. I’m mobile, but I have fatigue and tightness
around my body, and some numbness.
The first group was established in August 2008 and ran
for about three years, but the numbers dropped off and
it closed. This year, I decided to reopen it. I contacted the
MS organisation, and we started again. We have about 13
regulars, and they include people with MS and their family
members. We are Spanish speaking, but we conduct the
meeting in both English and Spanish.
Do you have any advice for people who are
considering joining a support group?
I’m a positive person, and I find pleasure in being with other
people who are positive. When you get hit with MS, you tend
to withdraw from society, but when you join a group, you
find hope and raise your self-esteem, because you’re doing
something positive. However, if you join a group, be ready to
talk, because you’ll make new friends, and those friends help
you to never give up on yourself. n
How have you found the group to be helpful?
I don’t have visible symptoms. I drive and I walk, and when
I complain about not being well, people don’t understand.
At the group, I feel as though I’m understood. You can ask
questions, and people support you, but it’s more than that:
it’s a social event. We laugh, we talk and we eat, but the main
thing is we feel we’ve been listened to.
When does the group meet?
On the first Friday of the month, from 10.30 to 12 noon, for
morning tea. Sometimes we’re still there at 2pm! As long as
there’s someone who wants to talk, and no one else requires
the room, we talk. The word ‘esperanza’ is Spanish for
‘hope’ – we hope that in the future, scientific research
will lead to a cure for MS.
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3/07/2012 4:06:48 PM
FOCUS ON MS
MS Awareness Month highlights
May is MS Awareness Month, and here’s a snapshot of some of
the fantastic events that took place throughout our regions.
Mass media
Comedian Tim
Ferguson and two
entertainers at a
fundraising dinner.
Activities shine light
The Kiss Goodbye to MS (KGTMS) campaign was
launched in Sydney’s CBD on 30 April and ran throughout
May, culminating in World MS Day on 29 May. This is the
fourth year of KGTMS, and the challenge was to wear, dare
and share all things red during May in order to increase the
community’s understanding of MS and encourage people to
raise funds for research and services.
In Sydney, the fundraising events included a dinner hosted
by Network Ten newsreader Sandra Sully at the China Doll
restaurant; in Melbourne, comedian Tim Ferguson hosted
a dinner at the Red Spice Road restaurant; and Brisbane’s
fundraising dinner was held at Gianni’s Restaurant. Lunches,
trivia nights and individual fundraising events were also held.
The corporate community joined in by using red lighting
to light up public buildings throughout May. In Brisbane, the
night sky was painted red courtesy of the Conrad Treasury
Casino, King George Square, QPAC, and the Brisbane
Convention and Exhibition Centre. Melbourne’s GPO,
Canberra’s Telstra Tower and Hobart’s Wrest Point Casino
also glowed red.
On 23 May, 30 people attended a health-professional
day at The Nerve Centre in Blackburn. Presentations about
MS were given by neurologist Dr Neil Shuey; Dr Elizabeth
McDonald, Medical Director of MS Australia – ACT/NSW/
ACT; and Professor Marita McCabe, from Deakin University.
On World MS Day, to thank supporters, MS Research
Australia hosted a cocktail reception at Kirribilli House,
the Prime Minister’s Sydney residence. The evening was
hosted by Network Ten presenter Kath Robinson, and Her
Excellency the Governor of NSW Marie Bashir was guest
of honour. At the time of writing, more than $726,000 had
been raised from KGTMS activities. To see highlights,
go to www.kissgoodbyetoms.org
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Megan Healey’s fundraising journey generated an amazing
amount of media interest in MS. (See her full story at right.)
Here are some highlights of Megan’s campaign:
• During the lead-up to Megan’s mow-down, she was the
subject of a story on Channel 7’s Weekend Sunrise.
• Megan’s children – Sydney, 12; Leilani, 10; and Finlay,
seven – were part of a panel on SBS’s Insight program
about young carers.
• On the day of Megan’s departure from Melbourne,
she was the subject of a live cross on Channel 9’s
Today Show, and her arrival in Sydney on World MS Day
was also covered.
• Megan’s departure was also covered on ABC News 24,
ABC Breakfast News, ABC1 News, Channel 10 News and
SBS News, as well as in The Herald-Sun, on the Triple M
(Melbourne) breakfast-radio program with Eddie McGuire
and Mick Molloy, on 3AW radio, on 774 ABC radio and in
That’s Life magazine.
• En route, Megan generated media attention, including for
many regional newspapers and in the form of regionalradio interviews such as for 3BA Ballarat, MyMP with
Glenn Ridge, ABC Goulburn Murray and ABC Illawarra,
and TV interviews on WIN Gippsland, WIN Wagga, Prime
7 Albury and Prime 7 Wagga Wagga.
• Megan’s arrival at the Westmead Millennium Institute was
covered by media representatives from Channel 9’s Today
Show, ABC TV, The Daily Telegraph and local Parramatta
papers, and she was interviewed by Chris Smith on
Radio 2GB, by James Valentine on 702 ABC and on
ABC Central Coast.
Other media attention
• The fundraising dinner held at Sydney’s China
Doll restaurant was covered in The Sun-Herald.
• The Daily Telegraph featured a story about
Emma Giunti, a person who has MS.
• MS Ambassador Jessica Gray was featured
in Practical Parenting magazine.
• Comedian Tim Ferguson and author Jillian
Kingsford-Smith, who have MS, were interviewed
on Channel 7’s Weekend Sunrise.
• World MS Day also attracted media coverage,
including an appearance on Channel 10’s
The Project by Tim Ferguson.
Hogan’s Heroes
raised more
than $46,000.
Megan Healey
is presented
with $10,000.
Megan’s mow-down
Even in her wildest dreams,
Megan Healey couldn’t have
imagined the attention her daring
fundraising adventure ‘Megan’s
Great Mow-down’ would attract.
Her journey on a ride-on mower
from Melbourne to Sydney
became a highlight of Kiss
Goodbye to MS.
Megan, 43, visited 25
towns over 16 days. Her family
accompanied her for part of the
journey, and she was also helped
by an enthusiastic crew of friends.
During her stop in Canberra,
Megan was met by Senator Kate
Lundy, Minister for Sport, on
the lawns of Parliament House
and was also a special guest at
a fundraising dinner held at the
Novotel Hotel.
On World MS Day, Megan’s
mow-down culminated in a
reception held at the Westmead
Millennium Institute, in Sydney.
She was greeted by her husband
Brian and the children along with
her friends and supporters; MS
researchers; and Mr Geoff Lee, the
NSW Member for Parramatta.
The reception received a lot
of media attention. Lawnmower
company Briggs and Stratton
donated to Megan the Ferris
mower she’d ridden, and also
donated a $10,000 cheque to
her KGTMS fundraising account.
Megan not only captured the
hearts of Australians; she raised
more than $50,000.
Walk and Fun Run exceeds target
The MS Walk and Fun Run took place throughout Melbourne, Sydney and
Canberra on Sunday, 2 June, and its fundraising goal was smashed: more
than $1.7 million – and counting – was raised!
The weather varied from torrential rain to winter sunshine, but the spirits of the
more than 11,400 participants weren’t dampened.
The Melbourne MS Walk and Fun Run started out cold and wet, but just as
it kicked off, the clouds parted and the sun started shining. Tim Ryan, 30, was
among the participants. The former VFL footballer, who now lives with MS,
walked with his wife Leanne and new baby daughter Quinn. Although Tim
had to stop every 20 metres, he persevered for four hours in order to
complete the five-kilometre course.
Adriana Grasso and her team members raised more than $142,000 – the
highest fundraising amount of any team in the history of the event! Meanwhile,
Mick Hogan and his 90-strong team Hogan’s Heroes took part for the fourth
year in a row and raised more than $46,000.
Robyn Hunter, CEO of MS Australia − ACT/NSW/VIC, walked with her
husband and four sons. “I was impressed with the passion and enthusiasm of
everyone who participated,” she says.
In Sydney, even though Hyde Park was a muddy quagmire, the participants
danced to the zumba music and walked in the rain. Highlights included a heartfelt
speech delivered by David Galea, an MS Ambassador, and the appearance of
Andrew Constance, NSW Minister for Ageing and Disability Services, who came
to support Bruce Frost, a constituent who has MS. Meanwhile, the reason that
Home and Away actor Lisa Gormley ran the eight-kilometre course was that a
friend’s aunt has MS. Outstanding NSW fundraisers included the team
members of Camp Saliba, who raised $20,000, and top individual fundraiser
Nicole Beath, who raised almost $8,700.
Despite some wild weather, the Canberra event had an upbeat vibe as
participants gathered at Rond Terrace, ready to take the much loved
bridge-to-bridge route around Lake Burley Griffin.
MS Ambassador Beth Wurker told the crowd about her journey with MS,
and judged the ‘best dressed’ competition. Beth awarded the individual prize
to ‘Gumby’ and the team award to The Randoms.
Congratulations and thank you to everyone who was involved, whether
you volunteered, donated, participated and/or fundraised.
For more information about the events, visit www.mswalk.org.au
Social-media success
The social-media campaign behind Kiss Goodbye to MS
was a huge success: 17,000 friends were made on the
Facebook page! The campaign was led by MS Australia’s
Emma Bennett, who encouraged thousands of people to
engage on Facebook, Twitter and Instagram. The innovative
‘Photo a Day’ campaign also attracted a huge response,
from people who were posting creative photos on Facebook.
Mottos shared
For this year’s World MS Day (WMSD), people who are
living with MS were encouraged to share the mottos
they use to get themselves through the difficult times.
Founded by the MS International Federation, World
MS Day has been held since 2009, and people from
about 70 countries participate in it. Visitors to the
WMSD website were encouraged to share their mottos.
Go to www.worldmsday.org to read more.
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Financial information
Employment and super
Once you’ve been diagnosed as having MS, it’s important you
understand your employment rights and how to access your
superannuation if your circumstances change.
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legislation, employers must keep the job of any worker who
has a work-related disability open for at least 12 months.
Many employers know very little about disabilities and will
be happy to help if you tell them about the problem. However,
if your employer won’t help, you might have a legal claim.
Anti-discrimination and workplace-relations laws are such that
your employer might be forced to either alter your working
conditions or pay you compensation.
If you’re considering giving up work because of
your health problems, you have to obtain advice before
you resign, because the way you cease work can affect
your entitlements.
Early access to super
If you’ve stopped work, you might be going through a
period of financial difficulty. Most superannuation funds have
a policy of allowing you to apply for access to some of your
super so you can help yourself through those times. However,
the rules for access can be complicated and can affect your
other entitlements.
If you access your superannuation on the grounds of
‘financial hardship’ and are younger than the ‘preservation
Thinkstock/Jacob Wackerhausen
Fortunately, under government legislation, employers
must take reasonable steps to accommodate their
employees’ disabilities. However, even in times of
economic stability, employers occasionally lay staff
members off. If you have a disability or chronic illness,
you have to be aware of your rights.
The ‘reasonable steps’ that employers must take to
accommodate their employees’ disabilities might take
the form of:
• changing your workstation by providing you with a
supported chair, improving the air conditioning or
moving your work area to the ground floor
• allowing you to take time off work or to obtain
medical treatment
• changing your work duties, in some circumstances
• allowing you to work part time.
If you’re considering reducing your work hours, make
sure you obtain some advice about how the reduction will
affect your superannuation.
Legally, your employer doesn’t have to offer you another
job, although he or she can’t terminate your employment for
at least three months. Under some Workers’ Compensation
age’ – between 55 and 60 – you might pay a significant
amount of tax on any benefit you withdraw. The amount of
tax can be up to 21.5 per cent. If you’ve ceased work as
a result of illness or injury, however, you might be able to
access your super because of ‘permanent incapacity’. A
superannuation benefit that’s released for that reason is
taxed at a concessional rate, and a significant portion of
the benefit is tax free.
Any amount you’ve taken out of your super fund won’t
usually count towards the income test for Centrelink
payments, and in most cases, your payments won’t cease
because you have that amount. Any amount you take out
of the super fund does count towards the ‘assets test’,
and if you access an amount that’s larger than $192,5001,
you might be above the Centrelink assets threshold, and
Centrelink will cease your payments for a time.
Terminal illness
Under the legislation, super-fund members who’ve been
diagnosed as being terminally ill are eligible to access all their
superannuation tax free. ‘Terminal illness’ means that the
member has fewer than 12 months to live.
In many superannuation funds, terminally ill members can
also claim the insured death benefit even though they’re still
alive. The insurance benefits are also tax free. n
Do you need help?
Maurice Blackburn Lawyers has set up a free
advice service. If you’d like to speak to an
expert before you access your superannuation,
or if you have any other questions about
superannuation or insurance, call 1800 810 812
to access the free advice and help.
Insurance benefits
You might also be entitled to claim some significant insurance
benefits. Most superannuation funds offer automatic ‘death
and disability’ insurance benefits that can be very valuable,
especially if you have a long-term illness or injury. You need
to note that often, because fund members have accessed
their super, their insurance cover under the policy ceases.
It’s extremely important you obtain advice about this aspect
before you decide to access your super.
In most superannuation funds, the insurance cover comes
in the following two forms:
• Death cover, which can sometimes be claimed if you’re
diagnosed as having a terminal illness
• Total and Permanent Disability, and Income Protection:
Income Protection – or Total and Temporary Disability
insurance, as it’s sometimes called – usually entails a
monthly benefit that’s payable for two years from the date
you ceased working, but minus the waiting period. Some
Income Protection policies are payable for five years, until
you turn 65, whereas others are payable until you die.
Redundancy
Many people believe that if they ceased work because they
were made redundant, they’re not entitled to claim a disability
benefit, but that belief isn’t necessarily sound. Many people
who are sick or injured when they’re made redundant are
entitled to lodge a claim for disability benefits through either
their superannuation fund or their insurance policy. If you
think you might be made redundant, you should obtain
advice about your superannuation entitlements, because the
way in which you cease work, as well as any agreements
you sign when you cease working, might affect your super
or insurance. Some insurance policies have a rule whereby
you’re prevented from claiming a disability benefit if you’ve
accepted redundancy. Although that rule is unusual, before
you sign any agreement or accept redundancy, you should
have an expert examine the agreement so you can be sure
that your superannuation entitlements won’t be affected.
This figure ($192,500) is for single people who own their home. Other figures
are applicable in the case of couples and people who don’t own their home.
The figure was current as in July 2012.
1
This article was supplied by Josh Mennen, Senior Associate in Maurice Blackburn
Lawyers’ superannuation and insurance practice.
Disclaimer: Individuals shouldn’t use the information in the article as legal advice;
they should seek professional advice as they require.
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spring 2013
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31
HEALTH+WELLNESS
Take charge of your health
The hot weather is on its way, so consider
investing in garments to keep cool.
South Eastern Sydney Local Health District
Multiple Sclerosis Clinic
Your MS symptoms can be exacerbated if your body
temperature increases even slightly. The body-temperature
increase can be caused by a fever, exercise or the
ambient temperature; in fact, a simple way in which you
can experience a body-temperature increase is to spend
time in a room that’s heated or go for a walk on a hot day.
Thankfully, when your body cools down, the symptoms
usually settle. However, most people are unable to spend
every hot day in an air-conditioned room, so it’s worth
considering buying a cooling vest, a cooling hat or a cooling
wrap for your neck, head or wrist.
Cooling vests
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.
For an example of how the three types of garment work,
let’s take a closer look at cooling vests. They come in a
variety of styles, and for some of them you have to freeze the
components whereas others have to be soaked in water.
Most vests that require soaking are made from wool or
micro-fibre and feature a non-toxic gel, which holds water,
whereas the freezer-style vests hold cool packs.
To understand the principles of a water-soaked vest, you
might like to read an explanation of the thinking behind the
E-Cooline cooling vest. This vest contains a ‘high-tech’ fleece
that absorbs up to two litres of water. The vest is worn over
regular clothing, and the fleece is capable of binding water
within seconds so there’s no wetness or drop formation
on the quick-drying outer fabric. In high temperatures, the
fleece releases the water through evaporation, cooling the
body like a natural air conditioner. This type of vest can
be used in foundries, glass plants and other hot working
environments but can also be used by people who have MS
so they can enjoy their daily life. The advantage of this type
of vest is that tap water is used for it, the vest is lightweight,
and the manufacturer claims that the cooling effect is long
lasting. Also, because the cooling mechanism is based on
natural evaporation, the vest doesn’t have to be chilled in a
refrigerator or freezer.
Other options
Cooling hats and accessories such as neck, head and wrist
wraps generally work according to similar principles. The
hats can range in style from caps to hard-hat liners, but most
contain a fleece or polymer gel you have to soak in water.
Most neck, head and wrist wraps also have to be soaked. n
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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For more information
Call MS Connect on 1800 042 138 for information
about cooling garments.
For information about the E-Cooline cooling vest,
go to www.e-cooline.com.au
HEALTH+WELLNESS
Ideas for exercise
Spring is a great time for improving
your fitness, so consider these options
and get started before the heat sets in.
Thinkstock/Georgiy Pashin/Purestock/Roy Palmer/Mike Powell
It’s widely accepted that people who have MS benefit from
exercising regularly because it can lead to improvement in
strength, mobility, balance, bowel and bladder function,
mood, and fatigue reduction. However, fatigue comes
with its own problems, because you might have trouble
contemplating heading to the gym when you can barely
drag your head off the pillow.
When the problems to do with heat sensitivity, stiffness,
tremors and issues of balance and mobility are added to the
situation, it’s easy to understand why the last thing you feel
like doing is exercising.
“One of the secrets to engaging in regular physical activity
is to find something you enjoy doing,” says Tracy Martinuz,
Exercise Therapist with MS Australia – ACT/NSW/VIC. “That
way, you look forward to the activity rather than view it as
being a chore.”
In general terms, if your chosen activity doesn’t cause
your symptoms to worsen, it’s probably suitable. However,
Aquaerobics
Many people who have MS find
that water-based exercise classes
suit them better than exercising on
land. Being in water not only entails
a natural resistance that can lead to
improvement in aerobic fitness and
strength development; it’s gentle on
joints. Heated pools mightn’t suit you
if you’re prone to heat sensitivity,
but if you go in a non-heated pool,
you can stay cool, especially during
summer. If you do go in a heated pool,
check whether it’s regulated to maintain
a temperature of between 25 and 34
degrees Celsius.
people who have MS are cautioned to regulate their physical
activity. “Don’t follow the mantra of ‘No pain, no gain!’” Tracy
says. “Listen to your body, because if you push yourself to
exhaustion, you might feel fatigued for days afterwards.”
Tracy advises that if you exercise in the morning, it’s
reasonable to expect to feel fatigued that afternoon. “But
if you still feel fatigued the following afternoon, you’ve
done too much. I’d recommend breaking up your
exercise – for example, if you’ve been exercising for
an hour, consider doing 30 minutes in the morning and
30 minutes in the afternoon.”
It’s important not to allow symptoms such as fatigue and
mobility problems cause you to stop exercising. “Exercise
is a good mood lifter. If the activity includes a class or a
club meeting, it becomes a social activity, which is great for
preventing or easing depression,” Tracy says.
Following are outlines of some exercise options you
mightn’t have thought of.
Bowls
There’s a lot to love about this sport,
because it’s a low-impact form of
exercise undertaken in an environment
that entails an opportunity for social
interaction. It’s also a sport in which
people who have a physical disability
can compete with able-bodied
competitors. Changes to the rules
aren’t required, and competitors
can compete on either normal grass
or a synthetic surface.
Canoeing and kayaking
If you love water, taking to it in a canoe
or kayak can be a wonderful way
of enjoying the great outdoors and
getting some exercise. Both sports
suit people who have a disability,
because everyone is required to wear
a buoyancy aid, and you can engage
in them with family members or
friends. Both sports have a variety of
options, from entering competitions to
having pleasurable days out on rivers.
Australian Canoeing is the national
organisation that’s responsible for
promoting paddle sports. Visit www.
canoe.org.au/ to find out about clubs.
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Handcycling
You use your arms to power a
handcycle, but apart from that
requirement, you can use a handcycle
in the same way you use a bicycle.
A wheelchair can be converted by
attaching gears and handlebars,
which you use in a push–pull
movement. You not only get
outdoors; you get a cardiovascular
workout. For more information, go to
the Cycling Australia website, www.
cycling.org.au, and look under the
‘Get involved’ tab for ‘Para-cycling’.
Table tennis
This sport can be played either socially or competitively
whereby you can aspire to play at international level. It’s
suitable for all age groups, and people who have mobility
issues can play it seated. If you have a problem with your
grip, a bat can be strapped to your hand. Table tennis is
great for improving concentration, coordination and the
speed of your reactions. Visit the Table Tennis Australia
website, www.tabletennis.org.au/, for more information.
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Pilates
This form of exercise therapy was
developed by Joseph Pilates, who
designed it for people who acquired
a disability during World War II.
The aim is to use slow, repetitive
movements to increase core
strength, muscle tone and flexibility.
Yoga
Several styles of yoga are practised, but the aim of all of them
is to increase flexibility, reduce stress and promote relaxation
and wellbeing by way of a combination of exercises,
breathing techniques and meditation. Please discuss how
suitable the yoga style is for your MS symptoms. Iyengar
yoga, for example, has been a preferred form of yoga for
people who have MS, because a qualified instructor can
easily modify it for the individual MS client.
Thinkstock/diego cervo/Huntstock/Christopher Pattberg/BananaStock/Denis Raev/Mihajlo Maricic/Liquidlibrary/Jupiterimages
Cycling
This is another form of exercise you
can enjoy with family members or
friends. Many public parks and scenic
areas have bikes for hire so you can
try out the activity before you spend
money on a bicycle. People who have
a balance or mobility problem can
opt for a bike that has wider wheels,
or a trike (tricycle); in fact, London
Paralympic gold medallist Carol
Cooke rode a trike for exercise and
pleasure long before she took up
para-cycling competitively.
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Martial arts
These types of activity entail a variety
of disciplines such as judo, karate,
kung fu and tae kwon do. They’re for
helping build strength and coordination
and can lead to improvement in
self-discipline and concentration.
Swimming
Water entails bodily support, so
swimming can be suitable for people
who have MS. It’s also a form of
exercise you can do alone, or you can
join a club and swim competitively.
Tai chi
Although this is a martial art, it’s worthy
of separate inclusion because it’s a
gentle form of exercise and meditation
that can lead to stress reduction and
balance improvement. n
Find out more
Wheelchair Sports in Australia provides information about various sports such as bowls, cycling,
swimming and table tennis. Visit its web site, www.sports.org.au
MS Connect can provide you with information about various exercise groups located in your area.
MS Aust Intouch Mag 210 x 140 2013 0725 OL.pdf 1 25/07/2013 11:49:03 AM
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Spotlight
on: sex and
intimacy
Sexuality and intimate relationships
have a significant role in the quality of
your life; however, sexual functioning
can be difficult because of MS symptoms.
These feelings can be complicated if the person’s
circumstances change. “Disability can lead to a
person’s dependency on other people for his or her
personal care. If the partner provides the care, it can
be very difficult to separate the role of carer from that
of intimate lover. Also, people with MS who have carers
and providers of nursing and domestic services intruding
into their home can be left feeling exposed in all areas of
their life, and have little private time.”
Gary explains that people who have MS and who need
personal care might find they receive a lot of ‘functional’
touch. “An example of functional touch is when another
person applies sunscreen to your face. That type of touch
is very different from intimate touch, and yet for a person
with MS, functional touch might be the only touch they
get; they miss intimate touch, which is about connecting
Thinkstock/Wavebreakmedia Ltd/LuminaStock/Monkey Business Images Ltd/ iStockphoto
Sexual connection and emotional intimacy are the glue
that keeps a relationship together, according to Dr Gary
Fulcher, a Clinical Psychologist who works with people
who have MS. “The importance of intimacy cannot be
emphasised too much,” he says. “It makes us human.”
Meanwhile, Dr Elizabeth McDonald, Medical Director
of MS Australia – ACT/NSW/VIC, points out that an
MS diagnosis can be the trigger for reactions of grief,
anxiety and depression, which can lead to a lowering
of self-esteem and reduction in self-confidence. “These
feelings can cause reduced sexual interest and
withdrawal from sexual activity. People with MS can
find it difficult to see themselves as being ‘sexual’,
that is, having sexual thoughts, desires and needs,
and at the same time, they identify with the role of a
person who has a chronic illness.”
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HEALTH+WELLNESS
with another person on a soul level.” Although
intimate touch can be non-sexual – for example a
hug between a parent and child – sex is always an
extension of intimate touch. “Even if the capacity for
sexual contact diminishes, the need for intimate touch
should be sustained,” Gary says.
Elizabeth recommends that people with MS who
experience sexuality problems allow themselves time
to assess their overall situation and to feel confident
about communicating their difficulties to the people
who are close to them.
“Deciding on a time and a peaceful setting to
talk about problems of sexuality helps to create an
atmosphere of mutual commitment. It’s important to be
gentle and express feelings without blame or accusation.
Both people with MS and their partner should explore
the areas of concern slowly and listen to each other
carefully, because misunderstandings and resentment
are frequently the result of poor or non-existent
communication. Remember that sexuality isn’t about
physical intercourse only; couples can gain, and give,
sexual pleasure by creating special times, places and
rituals. This aspect takes time, effort and nurturing.”
Gary points out that sexual activity encompasses
a wide range of behaviours, including kissing and
caressing, erogenous stimulation, oral sex, and
penetrative sex. “Disability might cause a reduction
in the person’s capacity to do some of those things,
but some can be maintained.”
By way of an example, Gary explains that although
sensation in the clitoris or penis might diminish,
introduction of a sexual aid such as a vibrator might
trigger orgasm. “If the couple are going to use that type
of aid, the relationship has to be an intimate one that
includes good communication.”
Deciding on a time and a
peaceful setting to talk about
problems of sexuality helps
to create an atmosphere of
mutual commitment.
Problems that can arise
are outlined as follows:
Erectile dysfunction: Although this can easily be identified
in men, it can also affect women, whereby diminished blood
flow to the clitoris can mean they require greater stimulation in
order to achieve orgasm. Treatments for men can range from
drugs to injections or penile implants. Speak to your general
practitioner, who might refer you to a specialist such as a
urologist or an andrologist.
Bowel and bladder problems: If the person who has
MS is worried about losing bowel or bladder control
during sex, he or she should be sure to evacuate before
having sex. Stress can also be removed if the bed is
protected with plastic sheeting or towels. Consult an MS
Continence Nurse for advice.
Positioning difficulties: Sex can be made challenging
because of increasing disability, along with tremors and
spasm. Communication is essential so that the sexual partner
knows what to do to ensure that the person who has MS is
comfortable. In fact, many people can find sex so challenging
they give up. However, maintenance of closeness and
intimacy is worth the necessary effort in persevering.
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Gary recommends that both partners approach
sex with a sense of humour. “It’s essential in a good
relationship, because it can be common for the intimacy
of sex to be interrupted by a challenge such as a spasm.
When that happens, try to return to the intimate connection
as soon as possible.”
If you’re single
Returning to the connection can be achieved by way of
other forms of intimate behaviour such as cuddling, kissing,
holding, stroking and massaging. “Be mindful during those
moments: focus on the experience of holding each other,
such as the warmth, the smell and the human closeness.”
Elizabeth says there are many reasons to feel positive,
because due to increasing awareness of the effects of MS
on sexuality, the management and treatment options that
are available have greatly improved. She advises people who
have MS to seek help from health professionals. “Although
bringing up the topic can be difficult and embarrassing for
the person who has MS, it can also be so for some doctors
and health professionals.”
It’s important to find an MS-healthcare provider with whom
one feels comfortable, or to seek a referral to someone
who specialises in this area. It can also be helpful to see the
healthcare professional together as a couple and to bring
pre-written questions.
“Sexuality is an important aspect of human life and must
not be neglected when the impact of MS on an individual is
being considered,” Elizabeth asserts. “Increasing awareness
and acknowledgement of the effects of MS on sexuality have
led to great improvement in the management and treatment
options that are available for people who have MS and who
are experiencing difficulties in this area.” n
When single people who have MS meet a potential
partner, one of the key decisions they have to make
is whether to disclose that they have MS.
Gary Fulcher, Senior Clinical Psychologist with
MS Australia – ACT/NSW/VIC, recommends they
make the disclosure before the relationship becomes
intimate. “It’s much better to disclose that you have
MS than to risk having your body fail you during a
moment of intimacy,” he says. “If you’ve discussed
the fact that you have MS with the person before
you’re intimate, he or she will know what to do.”
Gary recommends providing the partner with
information such as in the publication entitled MS
in Focus: Intimacy and sexuality, published by the
Multiple Sclerosis International Foundation.
Meanwhile, even though people mightn’t have
a partner, they need intimacy, and using sexual
surrogates is a way of achieving connection.
Scarlet Road, a documentary film released at
the end of 2011, featured the late John Blades, a
Sydney man who has MS. It was an examination
of use of sexual surrogates by people living with
a disability, and featured a sex worker from the
Touching Base organisation, the members of which
help people who have a disability and sex workers
connect with each other. To contact Touching Base,
go to www.touchingbase.org/
If sexual-functioning problems are causing stress in your relationship, seek help from the following organisations:
ASSERT The Australian Society of Sex Educators, Researchers and Therapists:
• The NSW branch can be contacted via www.assertnsw.org.au/
• The Victorian branch can be contacted via http://sexlifetherapy.com.au
• The national organisation can be contacted via http://assertnational.org.au/
Multiple Sclerosis International Foundation For a copy of the publication entitled MS in Focus: Intimacy and
sexuality, visit www.msif.org/about-us/communicating-ms/ms-in-focus-magazine/intimacy-and-sexuality.aspx
MS Connect: Call 1800 042 138.
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Thinkstock/Ryan McVay/mila-apid
Seek help
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
available for loan, and
you access them if you
have a computer and are
connected to the internet.
E-books can be
read on a computer, an
e-reader or a smartphone.
As is the case with lots
of technology, not all
e-books are compatible
with all e-readers.
The e-books we have
purchased are not
compatible with Kindles
or some other proprietary
e-readers, but they
can be read on most
other e-readers and on
computers, iPads and
many smartphones.
If you would like to
access our e-book
collection, please contact
the MS Library.
On the shelf
Fighting fatigue in multiple
sclerosis: Practical ways
to create new habits and
increase your energy
by Lowenstein, N.
Demos Health
This book was reviewed as
an e-book in the Spring 2011
issue of Intouch, and we now
have print copies available
for loan.
Fatigue is one of the most
common symptoms of MS
and can have a huge impact
on the quality of life of people
who have MS as well as on
their family. The goal of this
book is to assist people who
have MS to learn techniques
for helping themselves
have more energy to do the
activities they enjoy.
Living well with MS:
Lifestyle, diet and
complementary therapies
Sink into sleep: A stepby-step workbook for
reversing insomnia
You don’t look sick!
Living well with invisible
chronic illness
by the US National MS Society
by Davidson, J.
by Selak, J. and Overman, S.
Insomnia can be a serious
problem for individuals, their
family members and their
community. In this book,
Dr Davidson describes the
biology that underlies sleep
processes and the risk
factors for insomnia, and
addresses factors that have
an impact on sleep, such as
chronic pain and depression.
The focus of the
book is on using nonpharmacological treatments
for insomnia, but Dr
Davidson also outlines the
benefits and disadvantages
of sleep medications.
The topics discussed in
the chapters are as follows:
This book is co-authored
by Joy Selak, who’s
been living with several
chronic illnesses since the
late 1980s, and Steven
Overman, Professor of
Clinical Medicine and Division
Chief of Rheumatology at the
University of Washington’s
Northwest Hospital.
The book is divided
into four phases: ‘getting
sick’, ‘being sick’, ‘grief
and acceptance’ and ‘living
well’. Each section includes
stories written by both the
authors so that readers get
the perspective of the patient
and the physician.
The authors discuss the
following topics:
Website: www.media-server.
com/m/p/4yebgxno
The focus of this webcast is
on what ‘living well’ means
to people who are living
with any type of MS. Before
the webcast occurred, the
moderator received more
than 1,000 questions from
interested people who
have MS, and many of the
questions are explored during
the discussion.
The issues discussed are
as follows:
• Neuro-rehabilitation
strategies
• The many benefits
of exercise
• The importance of
managing depression
• The value of evidencebased research
• Nutrition
• Managing cognitive
symptoms
The webcast concludes
with a discussion about
the challenges involved in
managing progressive MS.
Demos Health
• Will this book help you?
• What is insomnia?
• What type of insomnia do
you have?
• Things to take care of
right away
• The essential elements of
sleep therapy
• What to do with your mind
• Maintaining your progress
Dr Davidson practises
clinical psychology within a
primary healthcare team.
Demos Health
• Pills, procedures
and paperwork
• ‘Disabled but not invalid’
• Listening to your
body and finding your
own balance
• Taking control of your
own wellbeing
• Learning to be honest
about how you’re feeling
The book also includes
a list of useful resources.
To borrow books or for help in accessing online resources, please either call the MS Library, located
in Blackburn, Victoria, on (03) 9845 2809 or email the Library at [email protected]
Contact your local bookshop if you’d like to buy a copy of a printed book.
spring 2013
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39

Stay employed

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