Bulletin Autumn 2015

150th
Edition
Bulletin

Inside | Autumn 2015
Letter from the Editor
Dr Greg Brotherson
The Multiple Sclerosis
Society of WA (Inc.)
Telephone (08) 9365 4888
Fax (08) 9451 4453
Freecall 1800 287 367
Member Services
Directory
GENERAL MANAGER, MEMBER SERVICES
Sue Shapland 9365 4840
WANGARA OFFICE
Unit 5/2 Prindiville Drive 9408 0772
or 9409 8920
BUNBURY OFFICE
9 Ramsay Street 9791 2472
OUTREACH GROUPS
Wilson Outreach (Mon-Thurs): 9365 4830
Beechboro Lodge (Mon, Fri): 9377 7800
Southside Outreach (Fri): 9592 9202
Albany Outreach (Fri): 9841 6651
MARGARET DOODY RESPITE HOUSE
Manager, Chris Rush: 9385 9574
FERN RIVER
Manager, Liz Stewart: 9356 2747
HAMILTON HILL
Manager, Jayne O’Sullivan: 9331 5780
TREENDALE GARDENS
Manager, Linda Kidd: 9725 9209
INDIVIDUAL OPTIONS
Manager Community Care Programs,
Gail Palmer: 9365 4851
Contact Us
If you would like to comment
on anything you read in this
Bulletin please email
bulletin@mswa.org.au
or write to
MSWA, Locked Bag 2,
Bentley DC WA 6983
The Bulletin can also be viewed at
mswa.org.au/bulletin
Editorial Committee
Greg Brotherson (Editor), Marcus Stafford (CEO),
David Bugden, Sue Shapland, Sandra Wallace,
Narelle Taylor, Leonie Wellington, Bhavna Jagtiani,
Taryn Mokrzycki and Dawn Burke. The Editor
welcomes unsolicited submissions. All articles are
subject to a reviewing process. The views expressed
are those of the Authors and do not necessarily
reflect the view of the Society’s staff, advisors,
Directors or officers.
Letter from the Editor 3
From the desk of the CEO 4
A message from the General
Manager – Member Services 5
Stay In Focus groups 5
Round-up of research and
other items of interest 6-7
National Disability Insurance Scheme
Hills trial site 8
Multiple sclerosis treatment update 9
Update on MSWA funded
research projects 9
Safety during meals 10
Hand therapy for function 11
Getting back into the kitchen 11
2015 Events 12-13
The Smart Equitest Balance Master 14
Introducing Shannon 14
Are you too hard on yourself? 15
Book reviews 15
That’s life with Narelle 16
An action plan to reach for the stars 17
Challenges when travelling 17
A day trip to Antarctica 18
Protecting yourself from the flu 18
Party food 19
MS Mega Home Lottery 20
World MS Day 20
Age not a factor 21
Les Misérables 21
Volunteering news 22
Colin Whitton 22
Wilson Outreach News 23
Southside Outreach News 23
NURSING Our nursing team is usually the first point of contact, after the neurologist,
for anyone diagnosed with multiple sclerosis. We’re committed to providing holistic support
so you have a greater understanding of what to expect from your condition.
Manager: Lou Hatter on 9365 4809
Hospital Liaison Nurse (S.C.G.H.): 9346 3333
Community Nurses: 9365 4812, 9365 4838, 9365 4870, 9387 4846 or 9365 4888
PHYSIOTHERAPY Physiotherapy aims to provide treatment interventions to develop and
maintain mobility and function. Our physiotherapists are experts in movement and function,
and work in partnership with Members to attain the highest possible level of independence.
Manager: Marilyn Sylvester on 9365 4818
Southside: Fridays on 9592 9202
OCCUPATIONAL THERAPY Occupational therapists work with Members, and clients,
to enable them to continue their work and other interests for as long as possible, where they
may otherwise have been limited by their condition.
Manager: Sandra Wallace on 9365 4804
Heather Mearns on 9365 4894, Robyn Loxley (Assistive Technology) on 9365 4866,
Ilissa Liew on 9365 4832 and Verity Defries on 9365 4833
COUNSELLING Some people need support to deal with the news that they have MS,
and the challenges that may present over time. Our qualified counsellors provide a safe
space for you to explore your concerns, in a safe and confidential environment.
Manager: Lisa Papas on 9365 4836
Support Counsellors: 9365 4808 or 9365 4811 Peer Support Program: 9365 4808
Welfare Officers & Funding Locators: 9365 4889 or 9365 4835
CAMPS & RECREATION
MSWA provides separate recreation camps for Members, carers, and families, primarily
funded by Lotterywest, and for a nominal cost to participants. These camps provide a
break from daily routines, and strengthen friendships and support networks.
Coordinator for Camps & Recreation: 9365 4843 In-home care: 9416 4505
INDIVIDUAL OPTIONS We are able to supply limited in-home support such as
assistance with personal care for people with disability due to multiple sclerosis, to help
them remain in their homes. Care and supports are provided through a combination of
funding from the Disability Services Commission (DSC) and our own fundraising efforts.
We also manage DSC allocated individually funded care packages.
Contact us on 9365 4851 for more information.
This editorial was first prompted after reading the most
recent magazine from the Multiple Sclerosis International
Federation, MS in focus, which was dedicated to ageing with
multiple sclerosis. Researchers have discovered that 10% of
people with multiple sclerosis are aged 65 years and older,
which is meant to say something positive about the increased
level of personal care that was specifically targeting older
people with multiple sclerosis. What really caught my eye
however, was the editor of MS in focus promoting the record
of the magazine over the past thirteen years and managing in
that time to publish twenty-three editions and build “…quite
a history.”
We may well agree, but this also got me thinking about our
own home-grown Bulletin, the magazine’s breech-birth,
its initial struggle for survival, evolution and its history of
achievements over the past 29 years. Over this period of
time, we have managed to publish 149 editions amounting to
some estimated 372,500 copies.
It was back in 1986 when the then CEO decided to stop
production on the fledgling Bulletin newsletter because of a
lack of confidence in its effectiveness. From a management
point of view the decision was probably sound. Nevertheless,
it still made sense that people with multiple sclerosis should
be able to define the image of themselves they wanted
projected into the community and in turn be informed about
research, the politics of disability and how the Society
was evolving.
As a group of concerned Members, we couldn’t therefore
just stand aside and leave the newsletter to simply die in its
tracks when so many challenges lay ahead. An opportunity
presented itself to ride a wave of enthusiasm created after
the Board of Directors, who having approved the funding
of the Society’s first computerised call-centre, allowed us
to continue publishing a newsletter and I stepped up as the
volunteer Editor. Space was made available in the occupational
therapy room, which in spirit made us feel that we were now
part of an increasingly visible ‘Team MSWA’.
For our part we never missed a beat from that day on and
by the end of the following year, OT assistant Maureen
Grickage and I had written, solicited and purloined the
material, and quite literally cut and pasted our work on
to master-sheets ready for Instant Print to produce what
would pass for a newsletter. We were finding our way as
we developed the current format but still produced twelve
by eight page editions of the newsletter in the first year.
Never in our wildest dreams did it ever occur to any of us
that 29 years later, we would be publishing the 150th edition
of Bulletin.
Brand & Communications Manager of MSWA, Taryn
Mokrzycki says, “Over the past two years, the Society’s
Brand & Communications Department has worked tirelessly
to ensure MSWA presents itself as a professional,
knowledgeable organisation.
“This has included taking over the design of the Bulletin
magazine, re-designing the materials seen by Members
and the public, including the website, and introducing new
ways of communicating with our key audiences. But that’s
not all we do, we also provide support to the fundraising
team for all their communications requirements, look after
all media activities and run direct mail campaigns to bring in
fundraising dollars.”
In line with each Bulletin published over the past two years,
an article from the CEO updates us on the Society’s help and
involvement in the administration of the MS Society of South
Australia and the Northern Territory. The General Manager of
Member Services, Sue Shapland, updates us on the significant
changes in the delivery of essential services to people with
disabilities taking place with the introduction of the NDIS and
My Way programs. Sue has also included a round-up of the
latest research and has written extensively with regard to new
clinical treatments. The Occupational Therapy Department
has included several excellent articles on making life easier at
home. The Physiotherapy Department introduces you to the
Balance Master. Counsellor, Leonie Wellington, talks about
self-compassion and there are the personal experiences from
your enduring favourites, Narelle, Ros, and Dr Ong along with
the latest news from the Outreach Groups.
The Editorial Committee hopes you enjoy this special 150th
edition of your Bulletin. Over the years, members of the Editorial
Committee, past and present, have set out to cover the wide
range of concerns people living with multiple sclerosis face.
Today, the Editorial Committee is a working committee with
each member responsible for generating the quality content
we publish for an increasingly sophisticated readership. It is
each of these people, experts in their particular field, that
keep the Bulletin alive and relevant. It is the Society’s Brand &
Communications Department that designs and publishes the
magazine and animates it on the website. The Society is now
firmly entrenched in the business of communicating with all
of our key audiences and beyond. We have come a long way
in the past 29 years!
2 Autumn 2015 The MS Society of Western Australia The MS Society of Western Australia Autumn 2015 3

From the desk of the CEO
Marcus Stafford
A Tale of Two Cities. In the 19th Century that was of course,
the name of a book penned by Charles Dickens. In the 21st
Century and in this article for the Bulletin, I have taken the
liberty of plagiarising that memorable title with a tale of two
very different Australian cities - Adelaide and Perth. More
specifically, the tale of those two very different MS Societies,
each working hard to fulfil their charter of service provision to
people with multiple sclerosis.
At face value Adelaide and Perth have many similarities. They
are coastal cities supporting a mid-sized population, keen
not to get sucked into a Sydney and Melbourne culture and
mentality. Each is framed by hills, with plenty of beaches,
wineries and restaurants. Each is fiercely parochial about its
cricket and footy teams. The staff are the same too, working
hard and largely passionate about either directly or indirectly
serving people with disabilities. Adelaide has a few more
churches than us, but other than that, pretty similar don’t
you reckon?
Yet the Societies find themselves at very different stages of
evolution. After looking at the history of both, its reminded me
of that movie Sliding Doors. Each Society has with the very
best of intentions, made different calls and decisions along
the way, and bit by bit they have shaped reality. These same
sliding doors exist with the respective State Governments
as they have grappled with the challenges of establishing
priorities and allocating funding.
So, where do we find ourselves today? MSWA has an annual
revenue of $35 million with around 465 staff. MSSANT on
the other hand has revenues of around $8 million and around
100 staff. MSWA’s balance sheet shows around $18 million
in net assets and is trading strongly, while MSSANT has little
to fall back on and has struggled. Rather than sliding doors,
it is well known that MSSANT was at risk of closing its doors
permanently in the middle of last year.
So what? Does any of this matter? Well, I believe it does!
Our first consideration has to be for the people that the
Societies are here to serve, people with multiple sclerosis.
We may choose where we wish to live, we may choose where
we wish to work and we may choose our sporting teams. But
people with multiple sclerosis did not choose their diagnosis.
Indeed they have done absolutely nothing to court or attract
their condition. So, it only seems fair to me that as in Perth,
folk struggling with their daily challenge in Adelaide should
have a lifetime friend and supporter like the MS Society to
help them on their journey.
And that is where we come in!
I have received overwhelming support from our Members
who have clearly expressed their view that they are delighted
that we are doing our bit to see if we can have a positive
effect on the MS Society of South Australia and the Northern
Territory’s sliding doors.
Early progress has been pleasing and the financials are ahead
of budget with some growth in Client services.
Our goal of course is to build a strong Society for people
with multiple sclerosis as we have done in Western Australia.
There is no complacency in those words. Firstly, the challenge
in South Australia is not underestimated and secondly the
journey in WA never stops. Well, until we find the cure anyway.
At which time I will sit on a sun lounger somewhere and raise
a glass to the fact that the world is a better place.
But how does the tale of two cities end? If I can take
author’s licence I will have both Societies and cities strongly
flourishing. And of course the obligatory last line “…and they
all lived happily ever after!”
Do you want to receive the Bulletin online?
Want monthly information updates?
Register your email address today to start receiving our
monthly Vitality e-newsletter and the Bulletin magazine online.
Just email bhavna.jagtiani@mswa.org.au or call 6454 3114
and let us know your current email address.
A message from the General Manager
– Member Services Sue Shapland
“Try to be a rainbow in someone’s cloud.”
Maya Angelou
Well here we are in 2015 and it’s March already! I hope you
are surviving in the heat and rather weird weather we have
been experiencing.
Once again, 2014 was a busy but successful and rewarding
year for MSWA and Member Services. We continued to grow
our services and hours delivered for Members; both in the
metro and some regional areas.
In December we relocated our Southside Group and other
programs to bigger premises in Rockingham. This is really
exciting as the additional space for physiotherapy and
massage in particular allows us to expand our programs and
provides a base for the Health Team to see Members in the
area. We are now moving ahead with building approval for the
proposed Bunbury service hub, we will keep you informed as
we make progress there.
The Balance Master is now being used at Wilson for
assessments and programs for people experiencing balance
problems. Learn more about the Balance Master on page 14.
The Health Team is busy planning some new and exciting
programs for Members in 2015 and the well-received
information seminar series dates will be circulated soon. The
team continues to try and source the latest information from
national and international sources on all aspects of living
with multiple sclerosis, effective symptom management
and useful gadgets that can really make a difference with
everyday chores, work or study.
Stay In Focus groups
A message from the group members
Our Stay In Focus groups offer you the opportunity to ask
questions relevant to your situation and to learn how others
deal with these issues. You will also learn where to access
more in-depth information and what courses are on offer.
Above all, come and share a laugh with friends, old and
new. Monthly meetings are held at Wilson or Beechboro
Lodge and group members invite you to come and join
them for a cuppa and a chat.
The Occupational Therapy Department also offers a wide
range of courses to Members at no cost, dealing with issues
from stress to clutter and all manner of things in between.
These are usually offered at our focus group meetings,
depending on what Members tell us they want to learn about.
There is certainly significant and ongoing change in WA
across both the health and disability sectors. The NDIS and
NDIS My Way trial sites are up and running; read our updates
on page 8 and keep a look out for more updates in future
editions. The long awaited and very impressive Fiona Stanley
Hospital is now open and the new children’s and Midland
Hospitals are well underway.
In 2015 we will see at least two more therapies for relapsingremitting
multiple sclerosis become available on the PBS;
Plegridy and Lemtrada. There is now an international focus on
research into progressive multiple sclerosis and we eagerly
await updates.
Our annual Member Services Survey is currently being
collated. Thanks go to everyone who has responded. I
look forward to reading the report, sharing the results with
staff and Members, and using the results to assist with
service planning.
Please remember, the Member Services staff are here
to help you with your enquiries about multiple sclerosis,
treatments, research, our programs and supports, and
more. As you know, multiple sclerosis affects people
in different ways so we try to tailor the information for
your situation. Please don’t hesitate to give us a call on
9365 4888 or send us a message via the contact us
link on our web page.
FOCUS GROUP DETAILS:
WILSON GROUP
Time: 10.30am – Noon
Day: 4th Tuesday of the month
Where: 29 Parkhill Way, Wilson
BEECHBORO GROUP
Time: 10am – Noon
Day: 3rd Thursday of the month
Where: Cnr of Amazon Drive and Darwin Crescent, Beechboro
If you are interested in attending either of the groups, or
would like more information, please contact Heather Mearns
on 9365 4894 or email heather.mearns@mswa.org.au
4 Autumn 2015 The MS Society of Western Australia The MS Society of Western Australia Autumn 2015 5

Round-up of research
and other items of interest
Sue Shapland RN, BN
Here we bring you brief summaries on research updates
found online from around the world.
From WA Neuroscience
Research Institute (WANRI):
Stomach ulcer bug may
protect against MS
WA researchers have found
evidence that the stomach ulcer
bacterium, Helicobacter Pylori
(H. pylori), is associated with a
lower risk of multiple sclerosis.
This adds to existing evidence of
the role the ‘hygiene hypothesis’
plays in autoimmune disorders.
Clinical Professor Allan Kermode and Dr Marzena Fabis
Pedrini at WANRI, collaborated with WA Nobel Laureate,
Professor Barry J Marshall AC, to show that prior infection
with the ‘stomach ulcer bug’, H. pylori, is associated with a
lower risk of developing multiple sclerosis.
C/Professor Kermode said, “The results from this research
may indicate that H. pylori has a protective effect against
MS and also bolsters evidence for the role of the hygiene
hypothesis in autoimmune diseases.”
Their study looked for evidence of prior infection with H. pylori
in blood samples of 550 people with multiple sclerosis and
compared the results with 299 age and sex matched healthy
individuals from the Busselton Community Health Study.
Their study showed that H. pylori infection was more
common in women who didn’t have multiple sclerosis and
less common in women with multiple sclerosis indicating that
the presence of a H. pylori infection may reduce the risk of
developing multiple sclerosis. The same association was not
seen in men.
The article goes on to say, “Understanding exactly how past
infections such as H. pylori influence the immune system
could pave the way for designing new drugs that mimic
this effect, to treat or prevent multiple sclerosis and other
autoimmune diseases.”
From MS Research Australia:
PrevANZ Update
This trial, supported by funds from MSWA, is testing if
variable doses of oral vitamin D supplements can prevent
MS in those at risk of developing the condition. Twenty sites,
across Australia and NZ, including WA, are recruiting. There
are currently 54 participants enrolled.
From MS International Foundation:
Ten-year prognosis in multiple sclerosis: a better
outcome in relapsing-remitting patients but not in
primary progressive patients European Journal of
Neurology 2014 by Kerbrat A et al.
This population-based study reported a lower risk of disability
progression at a 10 year follow-up in the relapsing-remitting
multiple sclerosis (RRMS) group than previously reported.
A total of 278 patients were reviewed and 80% of RRMS
patients had received therapies for at least six months.
The researchers sought to provide a 10 year history of
multiple sclerosis from clinical onset, from the time of the
first approved disease modifying therapies. They suggest
this information will affect the prognosis given to people with
RRMS and that the therapies may improve outcomes through
reduced disability progression.
UK MS Trust Site:
How common are tremors in
people with multiple sclerosis?
Prevalence and characteristics
of tremor in the NARCOMS
multiple sclerosis registry: a
cross-sectional survey Rinker
JR 2nd, Salter AR, Walker H, et al.
A tremor is an involuntary, uncontrolled movement and
commonly reported as a multiple sclerosis symptom. Little is
known about how common it is or how severe tremors are.
This study aimed to learn more about tremors in people with
multiple sclerosis through a large survey in the USA.
Five hundred and fifty-two participants completed a survey
providing information about their tremors such as part
and side of the body affected, family history of tremors
and if they were taking any treatments. The study found
that approximately 45% of people with multiple sclerosis
reported having some level of tremor. A quarter said that they
experienced a tremor that had an impact on their daily lives.
The authors concluded that their survey highlights that
tremors are common in people with multiple sclerosis and
can have a major impact on some people, affecting their work
and daily lives.
Can people with multiple sclerosis be disease free in the
long term? Evaluation of No Evidence of Disease Activity in
a 7-Year Longitudinal Multiple Sclerosis. Cohort Rotstein DL,
Healy BC, Malik MT, et al
With new and more effective
drugs now available for relapsingremitting
multiple sclerosis a new
treatment goal is emerging. No-
Evidence-of-Disease-Activity
(NEDA) represents a high level
of treatment effectiveness
suggesting that the treatment
has resulted in a complete remission.
Two hundred and nineteen participants were assessed over
seven years with yearly MRI scans and six monthly reviews.
NEDA was defined as no relapses, no sustained increase in
disability (EDSS) score and no new or enlarging lesions on
an MRI.
The study found that after one year, 46% of participants had
NEDA but at seven years only eight per cent of participants
were NEDA. The researchers concluded that the ability
of NEDA to predict future disability levels needs further
investigation and NEDA could also be used to evaluate the
effectiveness of new multiple sclerosis drugs in trials.
Read more at:
mswa.org.au/
researchupdate
Does tailored treatment help to
improve cognitive symptoms?
Mattioli F, Stampatori C, Bellomi
F, et al.
About half of all people with multiple sclerosis experience
problems at some point in time with aspects of thinking such
as memory, concentration or problem solving. Cognition is
the term used to describe all aspects of thinking.
An Italian study of 41 people with relapsing-remitting
multiple sclerosis used a collection of tests that examine
memory, recall, attention, processing speed and language.
All participants had a problem with at least one of these
cognitive areas.
Participants were randomly allocated to receive either a
treatment specifically targeting the cognitive problem they
experienced, or a general psychological intervention. The
study then compared the two to see which was most effective.
The study found that specific treatment and cognitive training
significantly reduced the cognitive problems the participants
experienced. They concluded that the intensive course of
tailored treatment is more effective than a general treatment.
From the International
Journal of MS Care:
Recommendations from the
International MS Falls Prevention
Research Network. Michelle
Cameron et al; International
Journal MS Care. 2014; 16:203-207.
Following their meeting in Canada in 2014, this network
identified recommendations for research protocols, “Whom to
target for Falls Prevention Trials”. The group was established
to help meet the need to develop and evaluate falls prevention
interventions for people with multiple sclerosis.
They recommended that research projects should include
people of all ages, with or without mobility aids, with or without
cognitive impairment, and with a history of a fall in the previous
year. As people with multiple sclerosis are at a higher risk of
falls for various reasons, studies and program design, and
evaluation has been complex. These recommendations will
assist researchers and increase participation in various projects.
6 Autumn 2015 The MS Society of Western Australia The MS Society of Western Australia Autumn 2015 7

National Disability Insurance
Scheme Hills trial site
January 2015 update
Multiple sclerosis
treatment update
Sue Shapland
The launch of the National Disability Insurance Scheme
(NDIS) on 1 July 2013 was the most significant reform of the
Disability Sector in Australia ever undertaken. It is expected
that this scheme will allow more equitable access to funding
for services and supports for everyone living with permanent
disability, subject to eligibility.
The WA NDIS trial site in the Hills commenced on July 1,
2014; the shires included in the staged rollout were the City
of Swan, then Kalamunda and then Mundaring.
To be eligible to participate, the individual must have a
permanent disability which has a big impact on that person’s
day to day life and their ability to participate in the community.
The person must also demonstrate that they will need supports
for the rest of their life. A link for the Eligibility Checking tool is
included in the website and contact details below.
In our spring edition of the Bulletin, we advised that in WA two
separate models of the scheme are being trialled in selected
areas of the State. One is Commonwealth-based and the
other is State-based. This is so that the best features of each
can be considered in the development of the final version of
the scheme.
People living in areas of WA currently not included in the trial
sites are still able to apply for funding through the existing WA
Disability Services Commission model.
Since the July 2014 launch in Western Australia, there have
been some significant achievements:
• 103 participants had their support plans approved by the
end of September 2014 in the Perth Hills area and around
500 additional participants were expected to have their
plans approved before the New Year;
• 449 participants living in the Lower South West had
approved My Way plans at the end of October 2014;
• NDIS chairman Bruce Bonyhady said that the scheme was
on time, on budget and progressing well.
NDIS contact details:
For people living in the local government areas
of Swan, Kalamunda and Mundaring:
NDIS: ndis.gov.au
Telephone: 1800 800 110
Eligibility Check: myaccesschecker.ndis.gov.au/
Some key findings of the report on the sustainability of the
scheme:
• Participation satisfaction remains very high at 1.67 on a
scale of -2 (very poor) to +2 (very good);
• 10,939 people in the trial sites Australia-wide have been
found to be eligible for the NDIS with 8,880 having
approved individualised support plans in place by the end
of September 2014;
• More than $395 million has been committed to these
participants;
• The average package cost in the first year of the scheme
is approximately $35,207; below the funding expectation
of $36,750.
MSWA will be providing ongoing information to our Members,
particularly those living in the affected areas and we are
actively seeking feedback from participants to help us
understand how things are working.
Information sessions for all concerned are currently being
planned and people living in areas covered by the NDIS will
be notified of these in due course.
We are here to assist our Members to access information
about the scheme and NDIS supports. If you would like
any further information, please contact Mark Douglas,
Project Officer for Member Services, on 9365 4824.
NDIS contact details:
For people living in the South Western Region
(Busselton and surrounds):
disability.wa.gov.au/wa-ndis-my-way/
wa-ndis-my-way/wa-ndis-my-way-model/
Telephone: 1800 996 214
Two more disease modifying therapies for relapsing multiple
sclerosis will soon be available in Australia with PBS approval.
New therapies are always welcome as they increase the
range of options available.
The first treatment, the interferon’s (Avonex®, Betaferon® and
Rebif®), only became available from the late 1990s in Australia.
They were then joined by Copaxone®. Prior to these, no treatments
were available. These self-injectable therapies are all still in use.
Over the past six years or so, a range of other effective
products, both oral and intravenous, have joined the armoury.
Tysabri® was the first in a new class of drug, the “monoclonal
antibody” and given by monthly infusions. Then Gilenya®,
the first oral treatment became available. This has now been
joined by Tecfidera® and Aubagio®.
Over the years, ongoing trials, when compared with the
natural history of multiple sclerosis before treatments, have
shown that the greatest benefit is achieved by commencing
treatment early. The inflammatory process and relapses in
the early stages of MS result in damage that in the long term
correlates with disability levels.
Finding the right therapy, both tolerable and effective at
reducing relapses and disease activity, is a process based on
informed decision making with your neurologist. Some people
may have to switch therapies as things change.
The latest two therapies soon to become available are:
• Lemtrada ® (alemtuzumab): It is a monoclonal antibody for
treating relapsing forms of MS in adults with active disease.
It works by depleting the B and T cells in the circulation.
Update on MSWA funded research projects
This year MSWA contributed a record $1.25 million to fund
Australian research into finding the cause, better treatments
and a cure for MS. We are committed to investing in research
as it provides people living with MS hope for a future free of MS.
Here are some of the research projects we’ve supported:
The PrevANZ Vitamin D Prevention Trial
PrevANZ is a wold-first clinical trial that aims to test
whether vitamin D supplementation can prevent MS
developing in people who have had a first attack. PrevANZ
commenced recruiting in June 2013. The trial will run over
four years and it is expected that results will be available in
2017. PrevANZ will test three dosage levels of daily vitamin
D3 supplements against a placebo in a total of 240 people.
Enhancing Balance in MS with Prof Soumya Ghosh
This WA study aims to evaluate whether the addition of brain
stimulation to structured balance treatment programs will
improve gait and balance and mobility in people with MS.
This infusion is given daily for five days and then 12 months
later for three days. Trials have shown that many patients only
required two rounds of treatment.
As with all treatments there may be side effects. These can
range from infusion reactions to more serious auto immune
reactions including over or under reactive thyroid disease and
a rare blood disorder.
People using this therapy require monthly monitoring via blood
tests for up to four years after the last infusion. Whilst this therapy
won’t be for everyone, it is an effective therapy for consideration.
• Plegridy ® (peginterferon beta-1a): It is a self-injectable
therapy for relapsing multiple sclerosis. This interferon
beta-1a is pegylated which extends its half-life allowing
less frequent dosing, i.e. every two weeks. It is the first
pegylated interferon approved and combines efficacy with
a favourable safety profile to the existing interferons.
Fortunately, in Australia, we have access to all of the approved
multiple sclerosis treatments. This isn’t the case in many
countries, reducing options for people with multiple sclerosis
and their doctors.
There are still a number of therapies in clinical trials and more
exciting is the prospect of some treatments in the future for
progressive multiple sclerosis.
If you would like any more information on multiple sclerosis
therapies, please call 9365 4888 and ask for a MS Nurse
or speak with your neurologist who can provide you with
up to date information on the therapies and ongoing trials.
The Australia & New Zealand NMO Collaboration
Neuromyelitis optica (NMO) is a rare neurological condition
which presents in approximately one percent of relapsingremitting
cases of MS. The Australian and New Zealand NMO
Collaboration seeks to identify the genetic markers which cause
a person to present with NMO, over someone who does not.
2015 Vitamin D metabolites project
with Prof Robyn Lucas
The project will study the link between vitamin D and MS
in more detail. In the blood, most vitamin D is transported
tightly bound to a protein. It was previously thought that this
bound vitamin D was the most important thing to measure.
How much, and how tightly, vitamin D is bound to the protein,
depends on your genes. This might explain why some people
with low vitamin D don’t have any increased risk of MS,
while others do. This may provide the closest association
with the risk of getting MS, but no one has looked.
8 Autumn 2015 The MS Society of Western Australia The MS Society of Western Australia Autumn 2015 9

Safety during meals
Michelle Searle
Hand therapy
for function
Swallowing impairment, or dysphagia as it is known medically,
occurs in about one third of people with multiple sclerosis.
These problems can have a negative impact on the person’s
safety and enjoyment during meals.
Swallowing difficulties in multiple sclerosis are caused
by demyelination of the brainstem which interrupts nerve
impulses to the muscles involved in swallowing. This may
impact on the strength, range or rate of muscle movements.
As well as interrupted muscle activation, sensory changes
can affect the person’s ability to trigger a swallow. These
problems not only confound a person’s safety leading to
distress, but can also lead to considerable embarrassment
and social withdrawal.
As 31 pairs of muscles are involved in the swallowing process,
a person may continue to swallow relatively normally with
considerable denervation of muscles involved.
When swallowing is affected however, it can have significant
impact on safety during meals. Difficulties can be experienced
during any of the three phases of swallowing: oral, pharyngeal
or oesophageal. Firstly, there may be difficulty chewing food
or problems in moving food around the mouth. When getting
ready to swallow, it can be hard to move food to the back
of the mouth. Triggering the swallow may be delayed or
effortful, and may result in coughing. Food may also remain
in the mouth after the swallow.
As food travels down the throat, the person may find that
some of it sticks to the walls and is hard to clear. Sips of
water can help to dislodge these particles. If the valve at the
bottom of the stomach is not working properly, food may be
regurgitated or reflux symptoms may result.
It is important to remember that these symptoms, like any
other multiple sclerosis symptoms, can get worse or improve
after a short time. In addition, fatigue may increase symptoms
later in the day. Stress, pain, depression and cognitive
changes can place a person at further risk of swallowing
related problems.
Long term risks of swallowing problems may include
malnutrition, dehydration, suffocation, choking and pneumonia,
which can be life threatening or result in a lengthy recovery
process. People at greatest risk are those who are dependent
on feeding, oral care, have a number of different disorders,
have a compromised immune system or are on a number of
different medications.
As a result of this significant risk, prevention is a priority of
any management plan. Working with a speech pathologist
and other health care professionals to develop a swallowing
regime can significantly reduce the risks associated with
dysphagia. This process involves assessments to determine
the best strategies to maintain safe swallowing. They are
designed to support a person’s independence and promote
personal management of swallowing issues.
If a person’s swallowing difficulties progress further, they
may not be able to manage normal food or drink safely. In this
case, the speech pathologist may recommend a modified diet
or thickened fluids. These will help the muscles involved in
swallowing to safely transfer food and drink into the stomach,
therefore protecting the lungs. By learning to modify diets, a
person can maximise safety, maintain health and maximise
enjoyment during mealtimes.
In a small number of cases, swallowing can become too
dangerous and a PEG feeding tube may be recommended.
This allows liquid meals to be fed directly into the stomach.
Some safe swallow strategies include:
• eating whilst sitting in a 90 degrees upright position and
remaining in that position for 30 minutes after your meal;
• taking small bites and mouthfuls, and chewing food
thoroughly;
• eating in a quiet environment free from distractions, i.e.
turning off the TV and avoiding talking;
• tucking your chin slightly downward toward your chest on
the swallow;
• drinking plenty of water throughout the day;
• adding extra sauce and gravy to your meals to help transport
food safely into the throat; and
• checking inside your mouth after your meal to make sure
no food is remaining.
If you are experiencing any difficulties with your swallow,
please do not hesitate to contact a speech pathologist.
A full time speech pathologist is employed at MSWA,
based at Wilson, and can be contacted on 9365 4871 or
at michelle.searle@mswa.org.au
Research is unclear as to how many people with multiple
sclerosis have issues with their hands and upper limbs. This
is partly because different measures may be used to assess
hand function. Some people report a lack of strength, reduced
dexterity, change in sensation, pain or tremors. Tremors can be
on resting or on movement. Change in sensation can include
the arm feeling numb, tingly, and sensitive to hot or cold, or
it could just not feel like it should. Hand issues vary but either
way, they can get in the way of doing the things you want to do.
The MSWA Occupational Therapy (OT) Department has been
considering establishing a hand therapy clinic for some time.
We recognise this need as our hands are such a basic aspect
of functioning. We need them to reach items, carry things,
write, type, shake hands and so on.
Good hand function requires the wrist, elbow and shoulder to
work together in synchrony in order to provide stability and
smooth movements. It also requires a good sensory system
so we can feel if something is hot or cold, how firmly we are
holding something, and to tell us where our arms and hands are.
Food! It’s a huge part of our social calendar and the reason
the kitchen was invented. For some people, cooking is
a way to connect with family and friends, to provide for
children or simply for the love of food.
Sometimes challenges such as tremors, fatigue or
decreased strength in the hands form a barrier that
prevents us from being able to do the things we love in
the kitchen. If this sounds like you, you may benefit from
a discussion with a MSWA Occupational Therapist. Along
with the new Hands Clinic which focuses on working with
you towards engagement in meaningful activities, we also
have a range of trial equipment that can help make the
task of cooking a little bit easier.
Here are some examples of how we have assisted Members
in the past:
• Modifying the activity such as breaking down a large
cooking task into a smaller, more manageable task that
still fits within a busy schedule;
We are pleased to advise that the OT Team has now set up
a Hands Clinic designed to help people with specific hand or
upper limb issues. The program will entail an assessment,
identifying your goals and setting up individualised tasks
with weekly sessions to work on strength, dexterity and
review sensation as required. The OT will use a variety
of strategies including compensatory and rehabilitative
strategies. At this point we cannot provide an in-home service,
however assessment and recommendations are offered.
The Hand Clinic will run in the Occupational Therapy
Department at Wilson on Wednesday mornings.
If you are interested or would like more information,
please contact Amanda King on 9365 4891 or at
amanda.king@mswa.org.au
Getting back into the kitchen
• using a kitchen perch stool so that someone is able to sit
whilst cooking or doing the dishes, and using a kitchen
trolley to help bring the food to the table;
• using a range of built up,
lightweight, angled cutlery to
help with meal prep and eating;
• different chopping boards with attachments to make
food preparation easier;
• tap turners, can, bottle and jar openers, and drink aid
systems;
• using an instant kettle to make a cup of tea when friends visit.
Press one button and it fills the cup to whatever level you
choose and to whatever temperature you have pre-set; and
• utilising a Thermomix which is an all-in-one appliance
that can chop, blend, grate, cook, stir and mix food, and
more. It costs almost $2,000, however it can be trialled
and hired from the Independent Living Centre WA to see
if it will be beneficial to you.
There are a lot of options for anyone who is interested, to
cook or prepare meals. The national Independent Living
Centre website is a good resource if you want to search for
possible solutions to challenges with cooking or any other
meaningful occupation. For further information, please
contact the Occupational Therapy Department on 9365 4888.
10 Autumn 2015 The MS Society of Western Australia The MS Society of Western Australia Autumn 2015 11

Help us stand up to MS in 2015!
The Multiple Sclerosis Society of WA (MSWA) holds many events throughout the year.
Help us stand up to MS by joining us at one of our many events - you can volunteer or take part!
Color Me Rad
Saturday, 28 March, Curtin University
Color Me Rad 5k is coming to Perth, bringing with it a tsunami of colour. You’ll
start off in a pure white shirt and get enough colour bombs thrown at you
whilst running to wind up looking like a packet of Skittles. The event is free for
all, young and old, and participants seven and under run for free. MSWA is the
event’s charity partner and part of the proceeds from the event will go towards
helping Western Australians living with MS. Registrations close on 27 March.
The Beyond Bank Night Ride for MS
Friday, 10 April, Wilson/Swan river
Enjoy the sounds and sights of the beautiful Swan River by the light of night!
This bike ride is a brand new, unique event for Perth. You’ll ride along seldom
travelled pathways and discover views of Perth along the way, many of which
will even surprise most Perth residents! Decorate your bikes with lights and
glow sticks and joins us for a 40 or 70km ride.
Rotary Team Challenge
Saturday, 2 May, Northam/Swan Valley
The Rotary Team Challenge offers you the opportunity to participate in an
exciting team event that takes you through the picturesque West Australian
countryside along a heritage trail that follows the path of the Eastern Railway
that formerly linked Fremantle to York in the late 1880s. The event will be run
over one day and you can choose to walk, run or cycle in the 22, 50 or 75km
categories. The distance and how you participate is up to you!
Joondalup Swim for MS
Sunday, 13 September, Joondalup
The Joondalup Swim is back for 2015 and set to break some new records!
Points are awarded for every $25 raised and the km’s swum by the team.
Funds raised from the ten-hour relay challenge will enable MSWA to continue
to provide support and services to people with MS.
Ocean Ride for MS
Sunday, 18 October, Fremantle/Hillarys
The Ocean Ride for MS is back! Join for a 70km, 50km, or 30km ride from
Fremantle, or enjoy a scenic 10km family ride from Scarborough and finish
in beautiful Hillarys. Last year’s event saw an incredible $319,000 raised
for people living with MS! There will also be a special stationary cycle
challenge exclusively for Members! Taking place over a ten week period
during physiotherapy, Members will create teams and set a goal to complete.
The kms ridden each week will be recorded with Members who participate
receiving medals for their participation at the event.
Stadium Stair Race
Saturday, 31 October, Domain Stadium
Get set for 2015’s Spooky Halloween themed Stadium Stair Race! With 1,200,
2,750 or 5,800 stairs to choose from, this unique race will a memorable
experience that is unmatched by any other event in Perth! Last year’s event
saw an amazing $42,785 raised for people living with MS in Western Australia.
Step Up for MS
Sunday, 7 June, Perth
Looking for a challenge? Run, walk or crawl the 1,103 stairs, that’s 53 flights,
to the top of Perth’s tallest and most iconic building, Central Park! Last year
we raised a phenomenal $212,385 for Western Australians living with MS,
help us step it up this year by taking part in this great event.
Helping hands are always welcome!
If you are interested in volunteering at any of these events, get in touch with the Events
Team at events@mswa.org.au or call them on 6454 3114. Alternatively, just come on
down to any of these events and show our enthusiastic participants some support!
(08) 6454 3131 events@mswa.org.au mswa.org.au

The Smart Equitest
Balance Master
Marilyn Sylvester & Oliver Guttinger
Are you too hard
on yourself?
Leonie Wellington
Balance impairment and falls are frequent in people with
multiple sclerosis and might occur even at the earliest stage
of the condition. The human body uses three sensory inputs
to maintain proper balance. They are: vestibular (inner ear
system), somatosensory (muscles, tendons, joints) and vision
(eyes). These sensory inputs interact with the brain which
drive and control our motor functions.
While there are many varied tests which physiotherapists may
use to assess both static and dynamic balance, the Balance
Master can accurately detect the person’s responses and,
record and illustrate the outcomes rapidly. This base line
of assessments defines the initial assessment and further
testing will track the person’s balance status, assisting the
therapist in determining an appropriate therapy program.
The Smart Equitest Balance Master uses a dynamic force
plate with rotation and translation capabilities to quantify the
vertical forces exerted through a person’s feet. This measures
the position of centre of gravity and postural control. The
dynamic visual surround also measures a person’s use of
visual information to maintain their balance (Smart Balance
Master 2013). It provides objective assessment of balance
control and postural stability by utilising a number of
assessment protocols. These protocols make up the complete
assessments known as Computerised Dynamic Posturography
which is considered the highest quality assessment available
to determine the underlying impairments related to balance
problems. The Balance Master provides retraining of the
sensory and voluntary motor control of balance with visual
feedback on either a stable or unstable support surface and
in a stable or dynamic visual environment (Smart Balance
Master: NeuroCom Systems Products).
Introducing Shannon
Shannon is a newly graduated physiotherapist from Curtin University, who joins the
MSWA team this year on a full-time basis. She comes from the country town of
Geraldton but has lived in Perth since commencing her studies in 2011. Shannon
loves sports, being with family and friends, and helping others. Before joining the
Physiotherapy Team, Shannon worked as a Care Support Worker for the MS Society,
providing in-home care for just over two years during her studies.
Shannon will be splitting her time between various facilities including Wilson,
Beechboro, Wangara and Clarkson. She is full of enthusiasm and is excited to work
with the wonderful Physiotherapy Team and MSWA Members.
The MSWA Physiotherapy Department will engage with
Members in these programs to facilitate restoration of balance,
working in tandem with other customised exercise programs
to improve strength, cardiovascular fitness, walking capacity,
general retraining in the gymnasium, circuit programs and
home programs.
The Balance Master was leased in mid-2014 and is housed in
a designated office at Wilson. Selected staff members have
received training in the use of this equipment. Ann Worrall,
MSWA physiotherapist and Oliver Guttinger, MSWA exercise
physiologist will manage and coordinate this program. The
MSWA Physiotherapy Team will also participate by providing
all the initial assessments, referrals and communication links
with the relevant neurology teams.
To date, 47 Members have been assessed on the Balance
Master. Approximately an hour is required to complete four
specific tests on the Balance Master. This includes time for
setup and discussion of test findings. These findings can
be used to direct training on the Balance Master over six to
eight sessions or balance exercises as part of a complete
physiotherapy program at home or in the gym. This is then
followed up by a re-assessment on the Balance Master where
the physiotherapist will note progress. The aim of improving
balance training is to reduce the incidence of falls by targeting
specific areas during balance training.
If Members would like to be considered for a balance
assessment using the Balance Master, please contact
the Physiotherapy Department at Wilson on 9365 4834.
A detailed physiotherapy assessment will be conducted
where you will be assessed on your suitability for a
balance assessment on the Balance Master.
Shannon Kennedy,
MSWA Physiotherapist.
How do you talk to yourself? We all do it. Maybe not out loud
but we do have an ongoing dialogue with ourselves on the
inside; our inner critic. It is at times driven by should haves
and could haves. What are your expectations for yourself?
Are you unfairly comparing yourself against others or against
markers set by the ongoing messages received from society’s
definition of what is success and happiness? Our ability to
shame and abuse ourselves can easily go unnoticed. I ask you
to stop for a moment and ask yourself; would I say the things
I say to myself to the people I care about?
In recent years there has been a resurgence in the western
world in embracing the practice of self-compassion. Linked
strongly to mindfulness and featuring heavily in Buddhism,
self-compassion as a practice is nothing new. Selfcompassion
is not simply being kinder to yourself, it is a
leap of faith. It is making the choice to drop your guard and
allowing yourself to be vulnerable. It involves facing fears and
creating a safe space within yourself to let go of blame and
shame. It is an ongoing practice which involves connection to
self and others, empathy, nurturing, non-judgment and sitting
with difficult emotions rather than numbing or avoiding them.
More and more research is being conducted around selfcompassion
as a therapy to assist improving mood and combating
our human inclinations to seek the negative and ruminate upon
it. There are many different ways of accessing self-compassion.
Here are some of the websites, podcasts, books and videos
that can be a starting point for you to learn more:
Greater Good, The Science of a Meaningful Life:
greatergood.berkeley.edu/gg_live/science_meaningful_life_videos
The University of California offers a wide range of videos
and their own podcast looking at the psychology, sociology,
and neuroscience of well-being and its links to a wider more
compassionate society: greatergood.berkeley.edu/gg_live/
gg_podcast/podcast/sonja_lyubomirsky_on_the_myths_
of_happiness
For a site that looks more closely at self-compassion, I enjoy
Kirstin Neff. I find her Tedx video talking about self-esteem
versus self-compassion very relatable and accessible:
self-compassion.org
I recently read Amanda Palmer’s book, The Art of Asking,
which led me to Brené Brown’s, The Gifts of Imperfection.
I found both of these books presented the ideas of selfcompassion
in a real life context which was attainable
and inspiring. See my reviews on the books further in this
article. Amanda Palmer’s book originated from her TED talk:
youtube.com/watch?v=xMj_P_6H69g
If you are interested in exploring self-compassion from a
traditional Buddhist perspective, Perth has many Buddhist
centres that offer classes and training in meditative practice.
They also have information on the origins of self-compassion.
The Buddhist Society of Western Australia offers free
introductory meditation classes. For more information, head
to: dhammaloka.org.au/program.html
As mentioned earlier, the concept of self-compassion is on a
moving spectrum of pure science, academia, self-discovery
and spiritual practice. My point being, there is no one way of
doing this right. It is a process of exploration, of discovery and
connection within you.
If you would like more information, please do not hesitate
to contact myself or my colleagues in the Counselling
Department on 9365 4811.
Book reviews
The Art of Asking Author - Amanda Palmer
Amanda Palmer is a singer, songwriter, activist, director
and blogger. This is her first book and it is written with such
frankness and honesty that it is difficult not to be instantly drawn
into it. If you are familiar with Amanda then you will know she
is not shy about shedding her clothes and in this book she has
allowed herself to be completely vulnerable with the reader. It is a
story about letting go of fear and creating a connection between
yourself and the wider world. Initially it may seem Amanda’s life
is far removed from most of us but it becomes clear very quickly
that the essence of this story touches us all. In keeping with the
ethos of the book, if you cannot afford a copy, you can register at
the gifting site set up by Amanda for readers to share her book.
The Gifts of Imperfection Author - Brené Brown
Brené Brown is a research professor on shame, courage,
worthiness and vulnerability. This book is compact and direct
and looks at what it takes to live a wholehearted life. Brené
understands the importance of creating a story to impart meaning
and understanding and that makes the concepts presented in
this book realistic and attainable. One of the ways she does this
is by referencing her own life experiences in the book. The book
not only provides guideposts for living a more compassionate life,
it cleverly and importantly addresses what gets in the way of
us having the courage to believe we are enough. For more of
Brené’s writing, head to her site where she has a blog.
Websites
Amanda’s gifting site: massmosaic.com/groups/162/view/
the-art-of-asking-amanda-palmer-book-gifting
Brené Brown’s site: brenebrown.com
14 Autumn 2015 The MS Society of Western Australia The MS Society of Western Australia Autumn 2015 15

That’s life with Narelle
Narelle Taylor
An action plan
to reach for the stars
Dr Andrew Ong
Here at Lincoln Park Aged Care Facility, the motto for
the month is ‘stay on your feet’. It’s all very well for those
residents who don’t have multiple sclerosis, but for me it is a
case of ‘get on your feet’.
The physiotherapist here is taking great pains to have me walk
around the hallways. The physiotherapists at Wilson have me
walking great distances. Apparently the aim is to make it
to Fremantle. The pulpit walker used by physiotherapists is
essential for this exercise but at least I get on my feet. I had
forgotten just how good it felt to be upright.
Years ago when I used a walker, my father thought I looked
gravitationally challenged and encouraged me to avoid
crashes to the ground by using a wheelchair. I progressed to
a scooter and wheelchair full-time and must add that there
have been many advantages.
At my eldest daughter’s 40th birthday last year for example,
some people had trouble walking after generous amounts of
French champagne. Not me.
Recently my father visited from Sydney and we went from
one tourist spot to another with me in a wheelchair. He was
confident that I was safer that way. To his horror though, and
mine, my wheelchair drivers suffered lapses in concentration.
I was twice catapulted from the chair - the first time onto a
busy road with a toddler on my lap and the second time onto
the cobblestone floor of a beer garden. It was unedifying both
times; for me, the pushers of the chair and for my father.
Luckily I can execute a perfect commando roll and I was
relatively unscathed.
Narelle (L) with her daughters.
The baby however, could not be included in the commando
roll for practical reasons and so I held her at arm’s length
above my head as I slid into traffic. My strategy impressed
my daughter, the mother of the baby. An excellent basketball
player, she whipped around to the front of the chair very
quickly and snatched the child as if she was accepting the
ball being passed to her on court. She commended me on my
good save and got on with the game.
I think the shock of this spectacle took a bit longer for my
father to absorb. He was only just getting over it a few days
later when I was hurled over a step and out of my chair again.
This time I stood upright and in what felt like slow motion, fell
to earth in my now familiar commando roll.
The crowd at the pub thought it was part of the floor show.
The applause was deafening. I can fall without hurting myself.
It is important we all know how to fall properly but, practising
falling is not recommended. Speak to the physiotherapist!
I see so many of my fellow residents using walking frames. It
makes me think life would be speedier and more comfortable
for them if they were in a wheelchair. But maybe they are
persevering with walking just as I did. They are staying on
their feet.
To discover your natural talents and gifts, ask yourself one
simple question. Exactly what do I want to do that will give me
the satisfaction, stimulation and excitement to make me happy?
I can begin by telling you that the source of happiness is an
internal thing and that it is very individual. You can begin by
understanding your own strengths and weaknesses, and
working with them to change any belief patterns you think
might be holding you back.
You must live your life the way you would like it to be. Learn
to create, not just react. Try making things happen, don’t
just sit back and watch it happen or wonder what has
happened! Remember, nothing can stop the power of a truly
focused mind.
There are no boundaries or horizon to the power of your mind
and your ability to achieve what your heart truly desires. Just
remember, we often strive for something we think will give
us happiness only to find out when we get it that it brings us
heartache and misery. So, be very careful about what you really
go for and focus upon in life, for you will get it! And for those of
you who are not happy, you know exactly what I mean.
Challenges when travelling
Essie Clinton
I am writing to relate my experience of traveling overseas
on holiday while being wheelchair dependent.
My husband Jim and I booked a trip to Penang, Malaysia with
a seniors group consisting of people over 70 years of age.
Although physically fit, many found the distance they had to
negotiate excessive and there was no apparent mobility help
available. It was only after a lot of enquiries at the Kuala Lumpur
airport that we found we could hire a wheelchair for $20.
We realised that our mistake was in not getting the travel
agent to make the necessary arrangements required seeing
as most of the group would need assistance with getting
around the airports. Having this pre-arranged would have
eliminated this problem.
For instance, we found that we had to get through a maze
of tunnels in the Kuala Lumpur Airport before we reached
the checkout. We were not even sure if we were going in
the right direction.
Therefore, to get what you really want, choose the best
teachers, read the best books, and keep up a continuous
programme of self-improvement through DVDs and life
experience courses. Be proactive. Success belongs to people
who never give up.
The most enduring and successful people discover for
themselves the opportunities, wisdom and strength that
would not otherwise be obvious to them in less favourable
circumstances. Never have truer words been spoken than
when it was said, that if you take care of the small things in
life, the big things will take care of themselves. The journey of
a thousand miles always commences with a first step.
So ask not what life should give to you, rather ask how you
can be of service in this life. Remember, no honest attempt is
ever lost. It is upon these millions of tiny trials and so-called
failures that success is built. In this way you can turn the
stumbling blocks you encounter into stepping stones.
Happy is the person who knows what to remember of the
past, what to enjoy in the present and what to plan for in
the future.
When we arrived back
in Perth, I asked for a
wheelchair but the person
assisting me could only
take me so far as they
were short staffed. Jim
had to push me to the
baggage carousel, but my
fold-up wheelchair wasn’t
even on the carousel. It had
been put to one side of it.
We have spoken to friends who have travelled overseas
and received all the mobility attention needed. Maybe if we
had not been on a budget-priced tour we would not have
had these problems. Our advice to you is to make sure that
your travel agent follows up on all arrangements before
you travel.
16 Autumn 2015 The MS Society of Western Australia The MS Society of Western Australia Autumn 2015 17

A day trip to Antarctica
John Cooper and Julie Nelson White
Party food
Ros Harman
An Australia Day flight to Antarctica fulfilled a long-time
dream for John and was a spur of the moment decision for
Julie. John was able to cross two things off his bucket list; he
flew over Antarctica and did it in business class deluxe. This
gave him extra room during the flight and the window seat
was a bonus. You may have seen John talking about the flight
on Channel 7’s Today Tonight in January. It was great seeing
Antarctica from 10,000 feet up with the relatively cheap and
safe option of flying. Julie’s aisle seat was in economy but she
was luckily able to snag a window seat halfway through the
Antarctica adventure.
The 12 and a half hour journey on the Boeing 747 jumbo jet
with 350 other passengers was cloudy until the pilot spoke
to Michelle from Casey Station, Antarctica. She told us the
weather was fine, although a rather cool -51°C. We changed
course and experienced four hours of majestic cloud-free
viewing of the ice and snow. We could feel the excitement in
the cabin when we saw our first iceberg. The windows were
mobbed and there was feverish clicking of cameras.
Because we were so high, scale was difficult to understand
but Julie remembers seeing a ship hard up against an ice
cliff and it looked about half the size of a fly speck. John
was a little disappointed that the clouds covered the ranges,
including Mt Erebus, making the pilot decide to head back to
Perth. We arrived home at 9.30pm. Overall, the scenery was
fantastic and created unforgettable memories for us both.
Everyone on the flight was there to have a good time, and
it showed with the easy smiles and camaraderie that grew
between passengers. There was an Australian official on
board who was able to naturalise two new Aussies over
Antarctica. All passengers sang the national anthem with
enthusiasm and repeated an oath of affirmation to Australia.
The flight crew were fabulous in assisting John when needed
and even dressed up for Australia Day.
It was a fantastic trip and well worth the money for an
unforgettable bucket list experience.
Protecting yourself from the flu
Access to flu vaccinations will be delayed slightly this
year, due to the changes that are being made to the
vaccine. We have been told that the vaccine won’t be
available until approximately mid-April. Please check
with your GP.
Each winter brings the risk of flu. Our Members often
ask if they should have the vaccination or not.
Our medical advisor Professor W Carroll says, “There
is no evidence that these vaccinations make multiple
sclerosis worse or cause a relapse. Should a relapse
occur around the time of flu vaccination, it is thought to
be a coincidental event.
“Occasionally, people with MS who have vaccinations
can experience a brief exacerbation of existing MS
symptoms, but this is not worsening of the MS. People
with MS are advised to discuss this with their treating
neurologist or physician as soon as possible as it is
essential to have the vaccination earlier rather than
later to reduce the risk of contracting the flu.”
Don’t forget that your GP and neurologist can advise
you on these important health matters. And, seek
advice from your neurologist if you are on disease
modifying therapies and need vaccinations for travel.
I was at a party recently and not knowing anyone, I joined a
group of shy people who were hovering at the side of the room.
Introductions were made, glasses handed around, and we all
admired the view from the picture window. After an awkward
silence, I tried to break the ice by making a comment about
the latest political headline but this only led to a few muttered
grumbles and a general feeling of despondency. I’d forgotten
my mother’s advice – if you want to make friends, don’t talk
about politics or religion.
A waiter appeared with a tray of canapés and at that moment
a woman could be heard asking, “Are these gluten free?” All
of a sudden the atmosphere in the room changed and the
party really got started as everyone launched into an animated
discussion about food. It started with food intolerances,
moved on to the advantages of ancient grains and lingered
for a while on whether blueberries could stave off dementia.
I learnt something new - apparently cauliflower is the new
kale and we can expect to see a lot more of it this year in
everything from purees to pizzas.
It was only seven years ago that Masterchef seduced us into
thinking we could all be maestros in the kitchen and Jamie
continues to insist that we can whip up a gourmet feast in
15 minutes. An endless string of celebrity chefs on television
keeps us abreast of the latest culinary techniques while it
only takes a few keystrokes on the computer to find a recipe
for anything. Television and Google have made us all food
experts; in theory at least, if not quite in practice.
I have been interested in food for a long time. I grew up in
a household where meat and three veg was the formula for
most meals, albeit adorned with olive oil and lemon to please
my Greek father. I was a teenager when I began to make
the connection between diet and health as I simultaneously
discovered mung beans and flared jeans. When my father
was diagnosed with cancer, my mother, having read about
the miraculous benefits of carrot juice, bought a large noisy
juice extractor which took pride of place on the kitchen bench.
I embraced health food with a vengeance causing my mother
much angst as I filled the fridge with cottage cheese and
alfalfa sprouts. Determined to save the world through food
I went to university planning to become a dietician, but my
stomach for the course disappeared in the third week when
I realised just how much science I would have to digest. I
abandoned dietetics for literature instead and I’ve been
devouring books ever since.
When I was diagnosed with multiple sclerosis at the age of
26, the Pritikin Diet was all the rage and some people claimed
it could help people with multiple sclerosis. It seemed to me
that its main premise was that you shouldn’t eat anything that
makes food taste better – no salt, no sugar, no fat, no alcohol,
minimal meat, and only the whites of eggs. I stuck to it for
nearly a year.
The climax came one miserable night when out for dinner with
friends, I sat bleakly picking at a lettuce leaf while watching
all sorts of gourmet delights appear and disappear around
me. I spent the evening hungry and unhappy, unwillingly at
the centre of attention as I repeatedly tried to explain to my
amazed dinner companions why I was not eating. I gave up
the diet after that.
I don’t know if the Pritikin Diet helped reduce my multiple
sclerosis symptoms. I didn’t enjoy it, but despite its stringency
it was good for me in a roundabout way - I learnt a lot about
myself that year, about my relationship with food and how to
be in control.
Diets and food fads have come and gone. Back at the party
my new friends and I knew them all, casually scattering our
expertise through the conversation like Celtic sea salt. We
deftly distributed our knowledge of cholesterol, carbohydrates
and calories alongside minutely described anecdotes of our
digestive health. Clearly people are more comfortable talking
about food than politics and I soon knew more about their
colons than their careers.
As I sipped my champagne and nibbled on a nori roll, I
reflected on how glad I was not to be worried about what I
was eating. So long as food is fresh, tasty and generally good
for you, I will eat it. I’m fortunate that I don’t have a weight
problem and my appetite is in sync with what my body needs
to stay healthy.
These days I have gone back to my Greek roots and follow
what I like to call the Aristotle diet. It was he who is credited
with first saying, “Everything in moderation.” And, if I might
add, washed down with a glass of wine, it’s the only way
to go.
18 Autumn 2015 The MS Society of Western Australia
The MS Society of Western Australia Autumn 2015 19

MS Mega Home
Lottery
Age not a factor
The first MS Mega Home Lottery of 2015 officially
launched on 18 February, and incredibly beat last year’s
record, selling out in just 10 days!
This year, the Grand Prize is the choice between the luxury
$1.45 million, 2-storey home or $1.2 million in cash. The
stunning Webb & Brown-Neaves home is located in Hillarys,
just metres away from Perth’s best beaches. The coastal
themed home boasts four double bedrooms, a home theatre,
open-plan kitchen, living and dining area, study, upstairs
sitting area, and swimming pool.
An Early Bird Prize of $500,000 is also up for grabs along with
4,002 prizes worth more than $3.3 million. The prize pool
includes six luxury cars as well as trips to the US, England,
Canada and Italy.
MSWA CEO Marcus Stafford, said the money raised will go
towards supporting thousands of people with MS across WA.
He said: “It provides much needed support and services to
people with MS and other neurological conditions, their family
and carers.
“MSWA is also the biggest funder of research into finding
the cause and cure for MS in Australia. In the past year we
committed a record $1.25 million towards research, with half
a million dollars of that to be spent on WA-based research.”
The Bonus Prize will be drawn on Wednesday, 1 April
2015. All remaining prize draws, including the Grand
Prize and Early Bird Prize, will take place on Wednesday,
29 April 2015. Keep a look out on mslottery.com.au
or head to our Facebook page to find out if you are the
lucky winner!
Alexander Tanasijevic isn’t like most boys his age. At only 11
years of age, he is the primary carer for his mother Branka
Smiljanic who was diagnosed with multiple sclerosis three
years ago.
The inspirational young boy takes on a whole list of duties
which include feeding the dog, taking out the garbage,
cooking, cleaning, gardening, giving his mother her
medication, paying her bills and washing her car. On top of all
that, he also spends his free time researching the condition
online to keep up to date with new treatments.
It’s an amazing amount of dedication from Alexander who has
been caring for his mother since he was eight.
To show her appreciation for Alexander, Ms Smiljanic
nominated him for the Young People Who Care Awards and
on December 9, he did his mum proud by winning the honour
in the 8-13 year old category.
Ms Smiljanic said Alexander truly deserved to win the award.
She said: “This is the best thing that has happened to me
in my 30 years in Australia. I visualised him winning so it
was absolutely awesome when he did but I was so proud, I
couldn’t stop crying.”
When asked about his choice to care for his mum, Alexander
said, “It’s not bad at all - I really love my mum.”
MSWA CEO, Marcus Stafford said it was fitting that Alexander’s
efforts and the efforts of other carers were being recognised.
“He really is a very special youngster. There would be very
few 11 year olds who are not just capable of being the primary
carer for their mum, but also happy to do it. His support and
love for her is quite amazing,” said Mr Stafford.
“Carers are often the unsung heroes in our society. They’re busy
working away in the background, taking care of their family,
friends or loved ones, but it’s important that we appreciate the
invaluable contribution they make in the community.”
World MS Day
MSWA will hold its annual MS Street Appeal on World MS Day,
Wednesday, 27 May, in the Perth CBD. The day will consist
of volunteers, Members, families and friends participating
in attention-grabbing activities to gain awareness and raise
funds for MS.
Some of the activities include: a double decker bus driving
around the Perth CBD making loud noises to grab people’s
attention, our red morph suit people roaming around the
CBD with Stand Up to MS signs, and volunteers participating
in the annual street appeal.
‘Stand Up to MS’ merchandise will also be available for sale on
the day, as well as an opportunity to donate money to MSWA.
Since the Street Appeal’s inaugural year, more than $60,000
has been raised for Western Australians living with MS.
MSWA Members also have the chance to get on board the
double decker bus and make some noise in the city. The bus
will consist of two 3 hour shifts and unfortunately will not
have wheelchair access.
If you would like to register for a spot on the bus or to
get involved in the MS Street appeal, please contact the
Events Team on 6454 3131.
Les Misérables
Jenny Sim
In January, I was very lucky to be given two tickets to attend
the Les Misérables performance at the Crown Theatre.
One ticket was for myself and the other was for my support
worker Bec, who looked after me and made for a great
companion.
We had special parking which meant we were able to park
close to the entrance. Once inside, despite me being in a
wheelchair, we were given great seats close to the stage.
This seating arrangement was excellent as there was a chair
for your companion, as well as space for your wheelchair.
The large area in front of us also made manoeuvring easy.
I had often wondered how you would be seated when in a
wheelchair – question answered!
The show itself was brilliant, with excellent scenery which
changed constantly. The acting and singing were fantastic.
I must thank Channel 9 for donating 100 tickets to MSWA
and making this night possible.
20 Autumn 2015 The MS Society of Western Australia The MS Society of Western Australia Autumn 2015 21

Volunteering news
Dawn Burke
Wilson Outreach News
Nicola Ryan
Hello again and welcome to the New Year. I trust you all
had a lovely and enjoyable break. Did you know that 2015
is the Chinese New Year of the goat/sheep? Our Members
and volunteers at Wilson Outreach celebrated Chinese
New Year on 19 February and were kept busy with various
themed activities.
We celebrated International Volunteers Day on December 5,
2014. I was lucky enough to be able to invite nine volunteers
to attend the annual Volunteering WA Garden Party at
Government House. We all enjoyed an afternoon tea of hors
d’oeuvres, drinks and beautiful music. Our table was also
very honoured to personally meet the first female Governor
of WA, Kerry Sanderson AO. It was a great opportunity for our
volunteers to get to know each other and share their varying
roles at MSWA. A lovely afternoon was had by all.
The annual Members, volunteer and staff Christmas party
was a huge success and was enjoyed by everyone. I tried
to keep to the theme of blue and silver with my Christmas
party outfit. I didn’t plan on looking like an elf, but apparently
I did! I’m sure everyone loved being entertained by a blue and
silver, bubble blowing, ribbon waving, dancing elf.
The new venue was fantastic and I believe it has already been
rebooked for Christmas this year. Christmas events such as
this can’t be run successfully without everyone pitching in
together. I’d like to thank the staff for the amazing job done,
especially Pam LeClus and Nicola Ryan. We couldn’t have run
the Christmas Party as successfully as we did without the
dedicated QBE corporate volunteers, who once again helped
set up on the day and served meals. QBE has been a great
supporter of MSWA over the years and we look forward to our
ongoing partnership with them.
I would like to take this opportunity to welcome our new
volunteers to the Society for 2015. We have a great team of
people here at MSWA and I’m sure you will enjoy your time
with us. As always, it is great to see our long term volunteers
back on board and I look forward to a fun, positive and
productive year.
If anyone is interested in volunteering or knows of someone
who would like to volunteer, please give me a call on
9365 4897. I will be able to share what opportunities may
be currently available.
Easter will be upon us before you know it. With this in mind,
I wish you all a Happy Easter and may you not overload on
chocolate. Until next time, please take care and bye for now.
Our lovely Christmas party was a huge success, with plenty
of positive feedback about the new venue and a fantastic
performance by the 90 children school choir which included
a full band!
We all enjoyed our lovely break, with staff and Members now
back feeling refreshed and energised for a new year!
We have exciting things planned at Wilson with our lucky
Members going on a virtual tour around the world! We will
experience other cultures and cuisines and learn more about
their history. And of course, there will be fun arts and crafts,
and games along the way, all from the comfort of our air
conditioned lounge!
Our first ‘stop’ is China and, with our passports stamped, we
get on-board the “MS Airways”! Our names will be painted
in traditional Chinese writing, we will explore the meaning
of our animal signs, learn about the most famous Chinese
inventions and educate ourselves on The Great Wall of China
and Terracotta Warriors.
The walls of our centre will be decorated with our arts and
crafts to really create the feeling of travelling to another
country. We will also indulge in fine dining and fortune cookies
to ensure we are well fed!
Once we ‘fly’ home, we will settle back into Wilson before
preparing to travel again in a couple of months to…India!
Look out as we get into the spirit of Bollywood, celebrate the
festival of colours and appreciate our favourite aromatic foods!
The third ‘stop’ will be Alaska! While there, we will admire
stunning mountain ranges and have some fun with ice and
snow. We will also do as the locals do and spend some time
fishing (watch out for bears!), and building a life-sized igloo!
Lastly, we will connect with our inner tribal warrior and travel
to the Serengeti in Africa where we will be entertained by
traditional African Drummers! With such wonderful themes,
we are sure our Members will enjoy another great year at our
Wilson centre!
This year also marks a special centenary for Anzac Day. It
will be 100 years since our brave soldiers embarked on that
fateful and historic journey. We are planning to hold a special
ceremony to commemorate this event at our Wilson Centre
and are hoping for a good turnout to honour our veterans,
past and present.
Southside
Outreach News
Colin Whitton
MSWA lost a dedicated and great supporter when Colin Whitton passed away in
September last year after a workplace accident. Along with his wife Lynda, Mr Whitton,
66, had been involved with MSWA for the past 18 years. Lynda has been the president
of the Bunbury Outreach Group Committee for the past 10 years and has MS.
Mr Whitton had been an employee of BHP Billiton for the past 24 years at the time of
his accident. As a tribute to Mr Whitton and to thank him for his years of service, BHP
Billiton donated $80,000 to the MS Society in his honour. We’d like to thank BHP Billiton
and the Whittons for their continued support of MSWA.
Colin Whitton (L)
with his wife Lynda.
Our new home in Rockingham is running very smoothly.
Everyone is very happy with all the extra room – no more
having to play dodgems while wheelchairs juggle for space!
Having air-conditioning throughout the building is also a
godsend during this very hot weather!
Our staff and volunteers really put on a show with their
“Dancing with the staff” performance during our Christmas
lunch! A very funny and clever parody of the popular TV show.
As ever, Nicola and the team did a wonderful job of arranging
the caterers, entertainment, gifts and much more. We also
have Ann and Annette to thank for the table decorations.
Having a designated area for craft is wonderful. Ann and
Annette have had ‘fun’ sorting out boxes of supplies and
equipment. We plan to make cards and other craft items to
put on sale as a way to fundraise throughout the year.
Bryan and Sally are off on a cruise in March. Cruising seems
popular with people with multiple sclerosis. Member Marija
wrote about her cruise experience in the last two editions of
the Bulletin! She found cruising easy for anyone with limited
mobility. We look forward to your story, Bryan and Sally.
22 Autumn 2015 The MS Society of Western Australia The MS Society of Western Australia Autumn 2015 23

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