Bulletin Spring 2018

BULLETIN
THE OFFICIAL MAGAZINE OF MSWA mswa.org.au
SPRING 2018
MSWA Member Matt Nichols
and daughter Willow Nichols
YOUNG DAD’S JOURNEY WITH MS
UPDATE ON MSWA FACILITIES
EMPLOYMENT AND MS
TREENDALE RESPITE

MSWA’S MAGAZINE FOR PEOPLE LIVING WITH MS
NURSING Our MS nurses are usually the first point of contact after the neurologist’s
diagnosis of MS. We’re committed to providing holistic supports; providing a greater
understanding of what to expect.
Lou Hatter, Manager: 9365 4888 or Community Nurse: 9365 4888
WILSON CENTRE
29 Parkhill Way (08) 9365 4888
Fax (08) 9451 4453
Freecall 1800 287 367
See Health Team Dept contacts on this page
MEMBER SERVICES
DIRECTORY
GENERAL MANAGER – MEMBER SERVICES
Sue Shapland: 9365 4840
INDIVIDUAL OPTIONS
Manager Community
Care Programs 9365 4851
NDIS TEAM 9365 4824
OUTREACH GROUPS
Wilson Outreach (Mon-Thurs): 9365 4830
Beechboro Lodge (Mon, Fri): 9377 7800
Southside Outreach (Fri): 9592 9202
Albany Outreach (Fri): 9841 6657
BUNBURY (WED) HUB
1 Mason Street, Davenport 6454 2800
BUSSELTON OFFICE
1/21 Cammilleri Street 9754 2320
MARGARET DOODY RESPITE HOUSE
Manager, Chris Rush: 9385 9574
FERN RIVER ACCOMMODATION
Manager, Danuta Figurska: 9356 2747
HAMILTON HILL ACCOMMODATION
Manager, Jayne O’Sullivan: 9331 5780
TREENDALE GARDENS RESPITE &
ACCOMMODATION
50 The Boulevard, Australind
Manager, Linda Kidd: 9725 9209
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),
Paul Cavanagh, Sue Shapland, Ros Harman,
Libby Cassidy, Caitlin Skinner, Sandra Wallace,
Narelle Taylor, Leonie Wellington, Sarah Lorrimar,
Rosemarie Dravnieks, 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
MSWA’s staff, advisors, Directors or officers.
PHYSIOTHERAPY Our team 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 you to attain the highest possible level of independence.
Dave Hathorn, Manager: 9365 4837 or Physiotherapy Department: 9365 4834
OCCUPATIONAL THERAPY Occupational Therapists enable Members, and Clients,
to continue their work and other interests for as long as possible through advice, aids and equipment.
Rosemarie Dravnieks, Manager: 9365 4804 or OT Department: 9365 4888
SPEECH PATHOLOGY Our Speech Pathologists provide support by assessing, diagnosing
and creating individualised treatment programs for Members who experience swallowing and/or
communication difficulties. We equip Members with information and strategies to promote better
communication and safe swallowing.
Jamaica Grantis, Manager: 6454 3140
COUNSELLING, PEER SUPPORT & HEALTH EDUCATION
Talking with a Counsellor creates a safe, respectful and confidential environment for you
and those close to you to explore options, create change or gain understanding about your
life. Attending counselling with our tertiary qualified practitioners enables opportunity
for personal growth and exploration in a non-judgemental environment. We have a Peer
Support & Health Education Coordinator who organises peer connection & events and
supports health and wellness education services. She can be contacted on 9365 4858.
To make an appointment please call:
Lisa Papas, Manager: 9365 4836 or Main Counselling line: 9365 4811
SOCIAL WELFARE Social Welfare Officers assist people living with MS and their
families to access services and supports to remain living independently at home.
They specialise in case management, advocacy and sourcing funding options.
They provide information on benefits and entitlements through Centrelink and other
government departments. Monitor NDIS/WANDIS Services.
Kath Knights, Manager, Social Work: 9365 4835
INDIVIDUAL OPTIONS We provide long-term and time limited in-home supports
including assistance with personal care for people with MS, to help them remain in their
homes. Care and supports are provided through a combination of funding from the
Disability Services, Department of Communities and our own fundraising efforts.
We manage both DSC and NDIS individually funded care packages.
Aileen Ward, Manager on 9365 4851 for more information.
THE NDIS TEAM We can help answer all NDIS questions.
Our experienced team can help determine whether you may be eligible for NDIS support
and assist you with your application. This includes developing an individual plan that
best suits your needs. We support people with all neurological conditions including
MS, Stroke, Parkinson’s Disease, Huntington’s Disease, Acquired Brain Injury and
Motor Neurone Disease, to name a few.
Geoff Hutchinson, Manager NDIS Business Development: 9365 4879
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
DIETITIANS are university-qualified nutrition experts who promote general health and
disease prevention/management through dietary changes. They provide evidence-based
dietary counselling and education, empowering individuals, with practical strategies,
to meet their goals and improve health, wellbeing and independence.
Jamaica Grantis, Manager: 6454 3140
2 | MSWA BULLETIN SPRING 2018

LETTER FROM THE EDITOR
DR GREG BROTHERSON
“Change is everywhere. Today it is fine; tomorrow it could be snowing.”
Anonymous.
Welcome everyone to the Spring Edition of your Bulletin, once
again written amidst the renovations by our willing contributors
here at the treadmill. MSWA is on the move in so many places
at the same time, it can be difficult to keep track of everything.
Beside the roll-out of the Nation Disability Insurance Scheme
(NDIS), it is the new MSWA facility at Butler that will capture
the eye once completed, and I can assure you, it will be
magnificent. You will learn about all of these other projects in
this information-packed edition of your magazine.
Change is also everywhere and impacting on our lives. When
the fees for using another bank’s ATMs were waivered, my
branch office at the Garden City Shopping Centre removed
all of their ATMs from inside the Centre. They also failed to
advise their customers, who were left to play ‘hide and seek’
party games in the Centre looking for an ATM.
What remains of a once thriving banking facility is reduced
to the bank foyer, now home to a singular, brand-new model
ATM with screens and keyboards which can carry out all of
the functions of a real-life teller. If you want to find the sole
remaining teller then join the queue behind the partition where
there used to be four pleasant, courteous tellers situated.
To be fair, after fifty-six years of marriage my wife and I
have adapted well to change over the years, but the sudden
confrontation with this inexorable march of technology threw
us slightly off balance. Never mind, the bank’s concierge,
an impeccable woman, was at hand to talk us though the
intricacies of this new world of banking.
Reassuringly our guide talked my wife through the procedure.
It turned out to be easy enough, but hardly a pleasant
experience. The concierge, however, could just as easily
been thinking aloud when I heard her murmur, “change is
everywhere … today it is fine; tomorrow it could be snowing.”
This got me thinking about all the changes MSWA has to make
to accommodate the game-changing NDIS. MSWA has never
been stronger than it is at present. To continue to achieve its
goals, it is now a provider of support services under programs
administered pursuant to the NDIS Act 2013 (Commonwealth)
and has rebadged itself as MSWA.
Continued over
INSIDE SPRING 2018
LETTER FROM THE EDITOR 3-4
FROM THE DESK OF THE CEO 5
A MESSAGE FROM THE GENERAL MANAGER –
MEMBER AND CLIENT SERVICES 6
MS RESEARCH ROUND UP 7-9
MSWA’S RECORD $3 MILLION INVESTMENT INTO RESEARCH 10
THE NDIS CONTINUES ITS RAPID EXPANSION IN PERTH 11
WITHIN A FAMILY SYSTEM 12
WHEN CHANGE IS NOT A CHOICE 13
LONELINESS: THE HIDDEN COST OF CHRONIC ILLNESS 14-15
HOW TO SUCCEED IN LIFE 15
HOW CAN I BE MORE ASSERTIVE? 16-17
THE PEER VOLUNTEER 17
WELLNESS 18-19
DOES DIET PLAY A ROLE IN
MS DISEASE PROGRESSION? 20-21
ANTIOXIDANTS 21
FATIGUE 22-23
COGNITION 23
UPDATE ON MSWA FACILITIES 24
PRESSURE MAPPING 24
EMPLOYMENT AND MS 25
YOUNG DAD’S JOURNEY WITH MS 25
THE ARTIST WITHIN 26
THAT’S LIFE WITH NARELLE 27
FUNDRAISING NEWS 28
STRAY CATS THEATRE COMPANY PRESENTED
SHREK THE MUSICAL 29
SPEECH PATHOLOGY WEEK 2018 29
VOLUNTEERING 30-31
ARTSY CRAFTY WEDNESDAY AT WILSON 31
SOUTHSIDE OUTREACH FRIDAY GROUP 31
ROCKINGHAM TUESDAY OUTREACH GROUP 32
GREAT SOUTHERN REGIONAL NEWS ROUNDUP 32
SOUTH WEST REGIONAL NEWS ROUNDUP 33
TREENDALE GARDENS 33
TREENDALE RESPITE AND A HAVEN AWAY FROM HOME 34
MSWA BULLETIN SPRING 2018 | 3

This brave new world of the NDIS, however, has been a long
time in the making. In April 1995 the then Federal Minister for
Health in the Keating Government, Dr Carmen Lawrence (also
the first woman to become the Premier of Western Australia,
1990 to 1993), visits the Society to meet the Board and
discuss concerns it has about future Commonwealth funding.
In particular, the Board wants to discuss the imbalance in
the funding agreement with the Commonwealth, where the
Society is contributing seventy seven percent for the provision
of services to Members, by fundraising.
For years the Society had been largely excluded from applying
for Commonwealth funding because those organisations on
the inside argued that the Society was a so-called ‘single
disability’ organisation, the mud stuck, and the Society
cannot shake this concocted historical tag.
The Society counters such humbug by flying its multiple
sclerosis (MS) credentials like a battle flag, to become a very
successful independently-minded fundraiser. However, at
that particular time in 1995, because the next battle to have
Beterferon (treatment) made freely available is yet to be won,
funding to enable people with MS to live at home has become a
heart-rending, calamitous problem. There are cases of people
mortgaging their homes to raise the $100,000 necessary to
purchase this first disease modifying treatment ever offered.
Dr Lawrence informs the Society that the Home and
Community Care guidelines are under review, explaining that
the Commonwealth is planning to introduce legislation to
provide funding to the individual in need of home care and
allow that individual to choose their service provider. This will
include people with MS.
It is now history that the following year, the Keating-led Labor
government was defeated by the Howard Liberal National
Coalition Government. It would be another seventeen years
before the NDIS Bill was introduced into Parliament in
November 2012 and enacted the following year.
Today people with disabilities, MS and similar neurological
conditions at long last have the ability to access funding in
a more timely and equitable fashion. They also have the
amount adjusted to meet changed need and they can choose
their own provider, as the NDIS is rolled out throughout
Western Australia.
The big losers however, are people aged 65 years and over.
It is these people who have been shuffled off into a grossly
inadequate Aged Care System where thirty percent of the
package is immediately recouped by the provider, and the
hourly rate of service is exorbitant. If that person happens to
be high-care, then the care cost doubles. It is little short of a
disgrace that the disabled elderly should be even thought of
in such a manner.
MSWA is not currently an approved Aged Care Provider, but
once again it is left to us to pick up the broken pieces of an
ill-thought-out policy so as to keep people with MS who do
not qualify for the NDIS, living at home.
On behalf of the Editorial Committee I would like to thank
you for your forbearance as MSWA follows its five-year
plan and reassembles itself in readiness for the future.
“Change is everywhere … today it is fine; tomorrow we
know Summer is coming.”
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 or the Bulletin magazine online.
Just email damien.hill@mswa.org.au or call 9365 4814
and let us know your current email address.
4 | MSWA BULLETIN SPRING 2018

From the desk of the CEO
MARCUS STAFFORD
A clear vision backed by definite plans, delivers success.
It is always pleasing to note the delivery of a record-breaking
year for MSWA, but perhaps most satisfying is the posting of
those records within the context of challenging times.
The 2017-2018 year saw MSWA’s gross revenue reach
the highest in our history, and our balance sheet further
strengthened. We stand alone in Western Australia as the
dominant generator of our own funds, with the majority of our
revenue coming from our own rich and diversified activities
within both the retail and commercial market.
MSWA led the nation in its research contribution, lifting to
a record-breaking $3 million for the year, with a thoughtful
balance of funding allocated within Western Australia,
Australia and internationally.
Apart from the regular and ongoing support of a multitude of
multiple sclerosis (MS) research projects, this includes strong
contributions to MS Research Australia, the International
Alliance for research into progressive MS, and the ongoing
support of symbiotic research into other neurological conditions.
Our investment into research increases the overall knowledge,
and ultimately benefits all of our Members and Clients living
with a neurological condition. MSWA’s continued leadership
in Australia is seeing advances in neurological research that
is making a real difference to people’s lives. And in keeping
with this focus, we are pleased to announce that we have
made a significant contribution to Motor Neurone Disease
research this year.
The number and range of services offered to people with
MS and other neurological conditions was extended further
during the year, along with the number of locations within
both the Perth metropolitan and rural areas.
Our cohort of people receiving services in 2017-2018
showed 65% having MS and 35% having other neurological
conditions. That balance is expected to become 60%-40% by
the end of 2018-19.
The annual Member survey had a total of 753 responses this
year, and once again, the respondents resoundingly expressed
appreciation and satisfaction for MSWA. I am pleased to say
that we consistently get outstanding positive results from our
survey every year, and we will continue to work to place ‘our
Customer’ at the centre of our activities.
Our strategy to extend scale to counteract the cashflow
uncertainties of the National Disability Insurance Scheme
(NDIS) environment, and to provide sustained support for
people who are not eligible to join the scheme, has been
successful. That success has given peace of mind and surety
to all people we serve, including people aged over 65 with
MS, and those who are newly diagnosed or only requiring
low support.
Meanwhile, within the organisation’s footprint developments,
our new Supported Accommodation and Services Facility in
Butler is coming along nicely, and the site is currently at lockup
stage. Our Mega Home Lottery launched in early August
and tickets are selling fast which is very pleasing, but perhaps
unsurprising, with a $2.7 million grand prize package.
Our dedicated events team delivered another fantastic Annual
Dinner and Auction and it was great to see both familiar
and new faces. Always thinking ahead, the team are now
preparing for Ocean Ride in November.
So, we bask in the glory of an outstanding year for
just a moment, but now focus on the year ahead with
the intention of delivering successful results for our
Members and Clients. Onwards and upwards!
MSWA BULLETIN SPRING 2018 | 5

A message from the General Manager –
Member and Client Services
SUE SHAPLAND RN, BN, Cert MS Nursing, MSCN
“What lies behind you and what lies in front of you, pales in comparison to what lies inside of you.”
Ralph Waldo Emerson.
This quote supports that belief, and we often see living
examples, that everyone has an inner strength that may not
become evident until life’s challenges come along. I have met
so many inspirational Members in my time here at MSWA
and their stories are varied, but they have all risen to the
challenge of being diagnosed with multiple sclerosis (MS) and
the ongoing changes that can bring.
What a difference a decade or two can make; the introduction
of new therapies over the years has and will continue to make
a real difference in people’s MS journey. We now have 12
therapies and thankfully some in trial for progressive MS, and
perhaps the promise of some treatments to repair damaged
myelin. The ongoing research really shows just how complex
MS is; over 200 genes are now implicated, and we know
more about other factors that contribute to the cause but
there’s still more we don’t know.
MSWA is very proud to contribute funds to support MS
research efforts here in WA, nationally and internationally.
Our annual contribution continues to grow – it’s $3 million
this year! We also now support research into other
neurological conditions.
Of course, the financial year has just ticked over and we are
busy finalising the reports.
The year ahead will be busier and even more exciting on many
fronts. Our new Butler Supported Accommodation and High
Support Facility looks amazing. The building is on track to
open in January next year, and it certainly won’t disappoint.
We are also currently fitting out premises in Kelmscott bringing
services closer to home for those in the eastern corridor. Work
is continuing, negotiating the Busselton premises with delays
beyond our control and we are also doing preparatory work
on the Albany premises.
The National Disability Insurance Scheme (NDIS) is expanding
across WA, with the roll out of Fremantle, Melville and South
Perth local Government areas from July 1. Our NDIS team are
busy working with our Members to prepare them for planning
meetings and we are holding seminars as well as one to one
appointments. If you need any information about the NDIS
please contact our team, see the update in this edition.
The next big roll out will include the remaining southwest
areas around Bunbury, the City of Joondalup and the City of
Wanneroo from October 1, 2018. If you know anyone under
65 living with a neurological condition who wants information
about the NDIS, please refer them to our team.
As you may have heard, Wilson has had a massive and well
overdue facelift! This has been a major undertaking and we
have had many months of upheaval and relocation of teams
and functions; but we had our eyes on the prize and now
we can enjoy our great building and new décor. I would like
to sincerely thank the wonderful staff who have been very
tolerant of the ongoing movements and noise AND of course
the Members who have been dislocated from Wilson to Como
where we held the Outreach Group for many months. The
larger gym and new massage rooms have been well received.
I hope not too many Members were affected by the winter
flu season, there have been some quite virulent infections
around and the weather hasn’t helped.
Please remember your Member Services Team are
here to assist you with accessing quality advice on
many aspects of MS and up to date information on
treatments and research. Please don’t hesitate to
make contact through reception on 9365 4888 or
Get-in-touch@mswa.org.au.
We hope you enjoy this Bulletin and find the articles of use.
Want to access research articles?
Here are the places you can access up to date research
articles relating to multiple sclerosis:
• Vitality – Our monthly research focussed e-newsletter
• Our website – https://mswa.org.au/news/latest-news
• Right here as part of your Member magazine Bulletin.
It includes great research articles and information every quarter.
Just email communications@mswa.org.au if you would like any further information.
6 | MSWA BULLETIN SPRING 2018

MS RESEARCH ROUND UP
SHARING RESEARCH UPDATES
FROM AROUND THE WORLD
SUE SHAPLAND RN, BN, Cert MS Nursing, MSCN
From the UK MS TRUST
Relapses and brain fog
Giedraitiene N, et al. Cognition during and after multiple
sclerosis relapse as assessed with the brief international
cognitive assessment for multiple sclerosis. Sci Rep. 2018
May 25;8(1):8169.
Many people with MS talk about ‘brain fog’ or ‘cog fog’ when
describing the feeling that their thinking processes are not as
organised or reliable as before. This study assessed memory
and thinking (cognition) to see how it changed during and
after a relapse.
For this study, 60 people experiencing an MS relapse, 30 with
stable MS and 30 without MS took part in this study. Cognition
was assessed using BICAMS, a quick and easy set of tests
measuring different aspects of thinking and memory. For
those experiencing a relapse, the tests were applied during
the relapse, and then one and three months after. The group
with stable MS and the group without were tested just once.
All test scores were lower in people with MS, both relapsing and
stable, vs those without MS. The test measuring information
processing speed was worse in relapsing MS than in stable
MS. Tests assessing visual and verbal memory were not
significantly different for relapsing MS and stable MS. Within
the relapsing group, scores improved one month after relapse.
The study confirms relapses can impact on cognition, with
information processing speed most affected; thus, it’s wise to
avoid making big decisions during a relapse. The good news
is that processing speed improves quite quickly and is back to
levels typical for people with MS after just one month.
The researchers commented that cognition is not often
monitored during clinic appointments and recommend
BICAMS as a quick and effective way to do this, particularly
for those having a relapse.
Intensive physiotherapy technique improves hand and
arm use.
Mark VW et al. Phase II randomized controlled trial of
constraint-induced movement therapy in multiple sclerosis.
Part 1: effects on real-world function. Neurorehabil Neural
Repair. 2018 Mar;32(3):223-232.
Constraint-induced movement therapy (CIMT) is a form of
intensive physiotherapy originally developed to help people
with one arm weaker after a stroke. It involves restricting the
use of the stronger arm and intensively training the weaker
arm and providing coaching for use in everyday life.
In this small study, researchers tested this technique with
people with MS and looked for MRI evidence of changes to brain
structures. 20 people with MS with significant weakness in one
arm received either CIMT or a package of complementary and
alternative therapies (CAM). Both groups received 3.5 hours
of direct contact therapy daily for 10 consecutive weekdays.
Eight people in each group completed treatment and returned
for follow-up assessment one year later.
Advanced MRI techniques were used to compare brain
structures in the two groups before and after treatment.
The CIMT group showed greater improvement in the everyday
use of their weaker arm than the CAM group and the
improvement was retained at the one-year follow-up.
Both groups showed improvements in speed and dexterity
of their weaker arm immediately after treatment courses. At
one-year follow-up, speed and dexterity of the weaker arm
had continued to improve in the CIMT group but was returning
to pre-treatment levels in the CAM group.
MRI results suggested that in the CIMT group there were
measurable changes in brain structures at the end of the ten
days of treatment; this was not seen in the CAM group.
The researchers conclude that the results warrant further
studies with greater numbers and longer follow-up times.
They intend to evaluate CIMT on people with MS with mobility.
Continued over
MSWA BULLETIN SPRING 2018 | 7

Read more at:
mswa.org.au/researchupdate
From the Barts Blog.
EBV in the brain
Epstein Barr Virus (EBV) is a herpes virus spread by saliva and
infects around 95% of us during our lifetimes. In many people
EBV infection does not cause prominent symptoms – it may
cause a ‘flu-like’ illness which gets better on its own, or it
may go completely unnoticed.
Some people infected with EBV experience the more severe
illness – glandular fever or infectious mononucleosis – with
fatigue, sore throat, enlarged lymph nodes, fevers, and a mild
hepatitis (liver inflammation).
There is lots of evidence to suggest a link between EBV
infection and the risk of developing MS:
• PwMS have high levels of antibodies, suggesting a specific
immune response against EBV
• Slightly higher rates of EBV infection in pwMS; 100% of
pwMS are infected vs 95% of the general population
• Increased risk of developing MS after glandular fever; 2.5x
more likely
• The detection of EBV infection in the brains of pwMS
The hypothesis that EBV infection is an important step
in developing MS makes sense. We know EBV evades the
immune system by infecting B cells, driving them towards
dormancy, and then promoting their long-term survival.
EBV has an ingenious arsenal of tricks to promote its own
survival by fashioning a long-term niche for itself inside B
cells. This dormant period is termed ‘latent EBV infection.’
A minority of EBV-infected cells will enter the ‘lytic phase’ of
infection, in which the virus rapidly replicates, kills the host
cells, and is shed to infect other cells. Recent data suggests
that B cells are key drivers of the disease, any factor which
promotes survival of B cells and hijacks the normal pathways
of B cell maturation could conceivably predispose people to
developing the disease.
Whether EBV is present in the brains of people with MS has
been slightly controversial – some people have said yes, and
others have been unable to replicate those results.
A study used a combination of biopsy and post-mortem brain
tissue samples to see whether EBV-infected B cells could be
detected in the brain; samples came from 17 pwMS and nine
controls without neurological diseases.
Latent EBV infection was detected using a marker called
Latent Membrane Protein 1 (LMP1), and lytic infection was
detected using a marker called BZLF1. LMP1 was detected
in chronic lesions both with and without active inflammation.
Importantly, LMP1 was also present in the brains of healthy
individuals. BZLF1 was present in both control brains and
brains from pwMS. Interestingly, BZLF1 was not present in
chronic active lesions – this is surprising and implies that
lytic infection is present in healthy brains, in chronic inactive
lesions, but not in lesions with acute inflammation.
The blog comments that this paper does not answer the
question it set out to answer and they are unsure how to
interpret these results. EBV-infected B cells appear to be
present in both control and ‘MS’ brains, and may be slightly
more common in MS.
The best evidence to date does suggest that EBV is present
in both MS and control brains, but is more common in pwMS
(90% vs 24%).
Clearly, the presence of EBV-infected B cells in the brain is
not sufficient to drive disease activity. Further work needs to
be done to understand why some people are perfectly healthy
despite having EBV in their brain, whereas others go on to
develop MS. Deeper understanding of how EBV is linked to MS
is an essential first step towards developing safe treatments
(and vaccines) which target EBV. EBV-targeted treatments are
in early stages of development.
Spinal cord volume loss: A marker of disease progression
in multiple sclerosis.
Tsagkas C, Magon S, Gaetano L, Pezold S, Naegelin Y,
Amann M, Stippich C, Cattin P, Wuerfel J, Bieri O, Sprenger
T, Kappos L, Parmar K.Neurology. 2018 Jun 27. pii: 10.1212/
WNL.0000000000005853.
Cross-sectional studies show that spinal cord volume (SCV)
loss is related to disease severity in MS. However, long-term
data is lacking. This study aimed to evaluate SCV loss as a
biomarker of disease progression in comparison to other MRI
measurements in a large cohort of patients with relapseonset
MS with a six -year follow-up.
The upper cervical SCV, total brain volume, and the brain T2
lesion volume were measured annually in 231 patients with
MS (180 RRMS and 51 SPMS) over six years using three
-dimensional, T1-weighted, MRI images. Expanded Disability
Status Scale (EDSS) score and relapses were recorded at
every follow-up.
8 | MSWA BULLETIN SPRING 2018

Patients with SPMS had lower baseline SCV (p < 0.01) but
no accelerated SCV loss compared to those with RRMS.
Clinical relapses were found to predict SCV loss over time
in RRMS. Furthermore, SCV loss, but not total brain volume
and T2 lesion volume, was a strong predictor of EDSS score
worsening over time.
The blog commented that loss of nerves in the spinal cord is
a prediction of whether you will lose leg function. This is not
surprising as the spinal cord is the nervous highway from your
brain to your legs.
Every one percent increase of the annual SCV loss rate
was associated with an extra 28% risk increase of disease
progression in the following year in both groups.
The researchers commented that SCV loss over time relates to
the number of clinical relapses in RRMS, but overall does not
differ between RRMS and SPMS. SCV proved to be a strong
predictor of physical disability and disease progression,
indicating that SCV may be a suitable marker for monitoring
disease activity and severity.
From MS Research Australia
Australians Develop Promising Technique for Myelin Repair
Repairing damaged myelin is essential to prevent the disability
progression in MS and techniques to promote repair are a
huge unmet need in MS.
Melbourne-based researchers, funded by MS Research
Australia, have developed a synthetic molecule called TDP6
that mimics a natural brain protein. Giving TDP6 as a treatment
after myelin damage increased the number of myelinated
nerve fibres and myelin thickness, indicating myelin repair.
It is hoped that this could lead to new therapies to repair
damaged myelin in MS.
The ability to repair damage in MS is one of the most pressing
goals of MS research. The myelin coating around nerve fibres
is damaged by the immune system, exposing the nerve and
interrupting the nerve signals travelling between the brain
and the body. Current treatments for RRMS aim to reduce the
damage caused by relapses and inflammation, but treatments
to repair damage are not currently available.
Myelin can be naturally repaired, however this repair is
often incomplete and eventually fails completely, leading to
progression disability. Stimulating and enhancing the natural
repair processes is a goal for many MS researchers.
Research conducted by Dr Jessica Fletcher, working with Dr
Simon Murray, Dr Junhua Xiao, and Assoc Prof Richard Hughes,
led to the development of a synthetic protein, which mimics a
naturally occurring brain protein to promote myelin repair.
Given as a treatment after myelin is damaged, TDP6 increased
the number of mature myelin-producing cells in the brain and
repaired myelin; in that the number of myelinated nerve fibres
increased and myelin thickness improved after the synthetic
protein was given.
This work has shown that this synthetic molecule can repair
myelin in a biological model of MS. While more laboratory
work is needed to further develop the treatment it’s hoped this
molecule could form the basis of a new therapy for repairing
existing damage and provide treatment options for people in
the progressive phase of their MS.
Read more at: https://msra.org.au/news/develop-promisingmyelin-repair
Modern MS Therapies Improve Employment Outcomes
New research, involving 874 people on disease-modifying
therapies in the previous five years, showed that more
effective disease-modifying therapies are associated with
increases in the amount of work, work attendance and work
productivity.
Being employed has benefits beyond purely financial – it can
improve quality of life, provide social interaction and give us
a sense of purpose.
MS studies in previous decades showed that pwMS were
much more likely to fall out of employment than people with
other chronic conditions and the general population. The
financial impact of reduced employment for people with MS
places a substantial burden on individuals, families and the
wider community.
Research published in 2016 by Dr Pieter Van Dijk at Monash
University, and Assoc Prof Ingrid van der Mei, using data from
MSRA’s Australian MS Longitudinal Study (AMSLS), showed
the gap in employment rates between pwMS and the general
population is closing.
The team at the Menzies Institute for Medical Research delved
deeper into the data from the AMSLS to explore whether the
use of disease-modifying therapies has played a role in this
improvement in employment retention for pwMS.
This latest study showed that pwMS on high-efficacy diseasemodifying
therapies were two to three times more likely to
report improved employment outcomes than those on the
lower-efficacy first generation MS treatments.
This study indicates the newer generation MS therapies are
having a positive effect on people’s quality of life, and allowing
people to maintain their health, keeping them well enough to
stay fully active and productively employed.
Many personal factors are taken into consideration when
choosing a medication, so it’s important to discuss your
therapy options with your neurologist.
Read more at: https://msra.org.au/news/therapies-keepingpeople-employed
MSWA BULLETIN SPRING 2018 | 9

MSWA’S RECORD $3 MILLION
INVESTMENT INTO RESEARCH
MSWA BRAND AND COMMUNICATIONS
MSWA is the largest funder of research into multiple sclerosis
(MS) in Australia, and the total contribution to neurological
research is nearly $14 million over the last 11 years. This may
come as a surprise to some, but not the loyal people who
continually support MSWA’s fundraising initiatives.
For the thousands of Western Australians living with a
neurological condition the latest commitment of a record
$3 million to research in the last financial year, offers hope
and relief.
The funding will be allocated across a number of institutions
this year, including $1 million to MS Research Australia and
$500,000 to the International Progressive MS Alliance.
MSWA CEO Marcus Stafford AM said, “this year’s
unprecedented investment was only made possible by the
people of Western Australia’s ongoing support.”
“We’re committed to improving the quality of life for people
with MS and other neurological conditions, and pleasingly,
we have been able to increase year-on-year the amount of
money we’ve invested into research and spent on providing
support, services and accommodation across the State.
And, it’s something we want to continue to do for many years
to come.”
For a fourth year in a row, MSWA has set aside substantial
amounts of money for local research and one project to receive
funding from MSWA, is Professor Allan Kermode, Head of
Demyelinating Diseases Research at the Perron Institute.
His research will focus on the potential of neurofilament light
(NfL) to be used as a biomarker of MS activity, using a simple
blood test.
Currently, clinicians use methods such as MRIs or the
monitoring of clinical symptoms to assess whether a treatment
for MS is effective, or if the condition is progressing. However,
these methods are expensive or time-consuming.
“NfL is a nerve protein that is a component of nerve cells,”
said Professor Kermode. “When nerve cells die, the presence
of NfL can be detected in the blood stream. What we’re doing
is analysing NfL levels in patients’ blood to work out whether
it’s a useful biomarker as a predictor of MS activity and
progression.”
Professor Kermode said the progression of MS varies widely
from one person to another and so does their response to
various treatments.
“Specific blood tests will not only permit more timely and
precise assessment of the response of MS to treatment,
as well as help guide personalised pharmacotherapy, but
they will also accelerate the development of new therapies,
especially those that may arrest clinical progression,”
Professor Kermode said.
“In a world-first, biomarker testing for NfL will be carried
out in people with Clinically Isolated Syndrome (CIS) who
have undergone narrowband UVB therapy,” Professor
Kermode added.
“People with CIS have experienced a first episode of
neurological symptoms that could progress to MS. As part of
this research, one group has been treated with narrowband
UVB phototherapy and the other hasn’t. The NfL levels of each
group will be compared to determine the effect of the UVB
phototherapy on conversion to full MS.
“The funding from MSWA will enable the Demyelinating
Diseases Research program to advance a range of initiatives
that would otherwise be beyond our reach.”
The money will also be invested in a research project that
evaluates the molecular and immunological aspects of MS,
employing a senior research fellow and MS nurse, and
migrating data onto an Australia-wide MSBase platform.
Mr Stafford said, “I would like to thank everyone who made
a donation, took part in one of our events, or bought a ticket
in the Mega Home Lottery. Because of you, we’ve been able
to support the Perron Institute and other brilliant medical
research organisations that offer hope to people living with
MS and other neurological conditions.”
As well as Professor Kermode’s research, MSWA’s recordbreaking
funding will be allocated across a number of institutions
this year, including $1 million to MS Research Australia and
$500,000 to the International Progressive MS Alliance.
Over the next couple of months, there will be more exciting
research announcements to come.
10 | MSWA BULLETIN SPRING 2018

THE NDIS CONTINUES ITS
RAPID EXPANSION IN PERTH
NIGEL CAREY MANAGER, MSWA NDIS BUSINESS DEVELOPMENT
On July 1, the National Disability Insurance Scheme (NDIS)
expanded to include the new geographical areas of Fremantle,
the City of Melville and the City of South Perth.
In anticipation, the NDIS team hosted a series of information
sessions to explain how our Members can get started with
the NDIS and what supports and services are available.
Attendance has been strong, and we are now actively
engaging with over 70 Members from these areas, as they
start their NDIS journey.
In fact, NDIS eligibility for some of these Members has
already been approved and they are now waiting for their first
planning sessions with the NDIS.
The NDIS team is still very keen to meet and support you
if you live in Fremantle, the City of Melville and the City of
South Perth and we haven’t yet spoken with you. We would
be happy to have an individual discussion with you in your
home, have coffee with you in a neighbourhood café, or one
of our facilities. The coffee and cake are on us!
The next NDIS areas to be launched will be the City of
Joondalup, City of Wanneroo and City of Bunbury and
surrounding shires. These will commence from October 1.
It should be noted that the City of Joondalup and City of
Wanneroo cover an extremely wide geographical area, so you
may well be included if you live in the northern suburbs!
We have over 500 Members on our database for these areas
and once again we will be actively contacting you to assist
in understanding the process and your possible transition to
the NDIS.
On another topic, we have been contacted by many Members
who are transferring from WA NDIS plans to Commonwealth
NDIS plans.
The transfer process is proving to be quite challenging, so
we do encourage you to contact us when you are asked to
transfer your plan. We can assist by checking your existing
plan and planning for a new one, as the processes are slightly
different between the two.
The future schedule for transfers is as follows:
August – October 2018: Members who live in the Cockburn /
Kwinana areas will be asked to transfer to the NDIS.
September – December 2018: Members who live in the
Lower South West, Busselton and surrounds, will be asked to
transfer to the NDIS
We are pleased to announce a Lucky Draw to celebrate
the expansion of the NDIS!
Here’s your chance to win a $100 shopping voucher!
Just answer the following three questions about the NDIS:
• What do the initials NDIS stand for?
• Name the three new NDIS areas that commenced on July 1
• Name one Member of the MSWA NDIS team
Email your responses to Mark Douglas at
mark.douglas@mswa.org.au
However, be quick!
Only the first three correct replies can win a voucher!
Finally, do have a chat with our friendly NDIS team if you
require any further information about the NDIS.
The NDIS team members at MSWA are:
Christine Richards: Client Relationship Coordinator
Email: christine.richards@mswa.org.au
Phone: 9365 4867
Pranjal Pawar: Client Relationship Coordinator
Email: pranjal.pawar@mswa.org.au
Phone: 9365 4810
Annabel Vasquez: Client Relationship Coordinator
Email: annabel.vasquez@mswa.org.au
Phone: 9365 4806
MSWA BULLETIN SPRING 2018 | 11

WITHIN A
FAMILY SYSTEM
ALYSON YEARSLEY, MSWA COUNSELLOR
“In every conceivable manner, the family is link to our past, bridge to our future.”
Alex Haley.
In my years of working with families, I have learnt the
importance of keeping the entire family in mind when
counselling individuals, couples or the family as a whole.
When one member is suffering, it will most likely impact the
entire unit. When a family member receives a diagnosis of
MS or other chronic or terminal illness, it has the potential to
affect all members and can often change the course of the
family story.
The best way to think of the family affected by illness, is of
a tapestry altered by a change in its pattern. Sarah Burton
MacLeod MD from Canada describes the family as an
interactive system:
• families contain and interact with many subsystems based
on relationships
• a change with one of the members of the family will
influence the entire system
• emotional interdependence has evolved to promote
cooperation to protect their members (Mehta et.al., 2009)
The predictability of the family surviving or managing an
illness can be found in how resilient or healthy the family is to
start with. Questions to ask may include:
• how has the family adapted to change in the past?
• how supportive are members of each other?
• what complications are getting in the way?
Complex family systems with multiple challenges such as
economic, mental health, family conflict or multiple health
issues may complicate navigation through a new family
health challenge. Stresses within the system may need to be
addressed before anything else will change. Often the core
strengths of the family based on love, caring and shared
family values will motivate members to go the extra mile to
do what is needed to promote positive change. Sometimes
this shared challenge will bring the family together.
Strategies to help families cope can include:
• improving communication within the family
• educating family members on health issues and what to expect
• creating awareness of how each member is affected
• learning practical skills to decrease stress and promote a
healthy lifestyle
• accessing professional help for members of family that are
most affected
Counselling individuals who are dealing with a chronic illness
can have a positive impact on the entire family. When a
Member is feeling supported and heard, stress levels can
decrease. Most of our counselling at MSWA is on an individual
level but can incorporate a family systems approach or
family inclusiveness. This can lead to cooperation within
the system, increased resilience and shared understanding.
What if someone is isolated or has an unsupportive family?
Counselling can often bridge the gap or to help the client
build a larger support network. MSWA Groups for Members
or carers can expand this even further, as meeting others
affected by similar challenges can help someone feel more
connected or bring about change on a community level.
What I have learned learnt from my experience working with
families is that there is an emotional bond between Members
based on the history of the family and the need for the family
unit to survive. Most families I meet love talking about their
family, even the dark side of the story over generations. The
past traumas, conflicts and challenges are noted as what
made the family stronger or in some cases fall apart. Talking
about the past can often uncover what may have contributed
to family stress to begin with.
Whether promoting positive change, companioning
along a journey or supporting family during loss and
grief, MSWA counsellors are here to help.
References:
The Family as the Unit of Care: Challenges & Rewards; Sarah
Burton MacLeod, MDCCFP & Kim Crowe, BSW RSW
Mehta, A., Cohen, S.R., & Chan, L.S. (2009). Palliative care:
A need for a family systems approach. Palliative & Supportive
Care, 7(2), 235-243
12 | MSWA BULLETIN SPRING 2018

WHEN CHANGE
IS NOT A CHOICE
KATH BUDZINSKA, MSWA COUNSELLOR
We are told that change is inevitable and that may be so,
but sometimes we have change forced upon us in a most
unexpected manner that leaves no room for choice. I
remember my then seven-year-old son having an “I’m not
going to school today” moment, as he very unhappily got out
of the car, he said to me with a big scowl “you always say
we’ve got choices!”
“Yes” I reply, “you can do this willingly or unwillingly.” When I
relay this story, it is usually greeted with sympathetic laughter,
because I think we can all relate to his frustration.
Some research suggests that there are phases we go
through on our way to a different life. In the beginning we
may not recognise a need to change or be unaware that
change is about to be put upon us. This is regarded as
the Precontemplation Phase. The Contemplation Phase is
when we begin to recognise a possible change, then comes
Preparation, Action and Maintenance. That is, if the change
was a personal choice.
When change is thrust upon us, there is often little or no
time for the luxury of contemplation before action is required.
However, there are still some things, such as those listed
below, which people may find helpful. These are responses
where we potentially have a choice, at any given time, of
taking an action or not, according to whether we perceive
that action as making matters better or worse.
Staying focused in the present and working with what is
right in front of us at any given moment, is helpful in not
becoming overwhelmed. However, a broader awareness is
also helpful in planning ‘where to from here.’ The following
suggestions may be of some help when facing a situation
beyond our control.
1) Knowledge. Do your homework; what do I need to know
right now? Do I need to have a witness or a guide to help
me understand the situation?
2) Emotions. Honour our feelings, how do I feel right now?
Remember feelings are not right or wrong – they just are.
3) Situation. Is there something going on around me that I
am a part of? Can I make a difference?
4) Self-awareness. Am I focused on reality or am I
distracting myself with fantasy and illusion? What do I
need right now to be able to stay in reality without being
overwhelmed?
5) Community-awareness. What outside supports are
available to me? Who best can help me with access
to support?
6) Fear. Sometimes the only way to deal with things is
keep moving through them (maybe at an angle – like
swimming through a rip – just don’t stop swimming).
Doing ‘the next indicated thing’ or ‘forward movement’
can be aided by skills such as meditation and mindfulness.
There may be times that we fall flat on our face but that is
still forward motion.
7) Alternatives. What small thing can I do differently to
simplify my life at this time? Am I getting enough sleep?
8) Humility. People will want to help, and we need to let
them. It’s good for all of us, sometimes being the giver
and sometimes the recipient.
9) Gratitude. Acknowledge the good in our life. The good
fortune to have food and shelter.
10) Set the scene. Create the space of our desire. Make our
environment work for us. Is it a time of quiet or a time of
stimulus? Do we have a place that meets those needs
and helps keep the balance?
None of these tasks are set in concrete, they have their own
pattern and their own time frames. Some things we can
manage easily and simply, others maybe not, or not at this
time. Sometimes we need to ask for help, whether we want
to or not and sometimes it is more beneficial to get help from
outside of family and friends.
If you would like to talk freely and in confidence to
someone who has skills in helping, please contact the
Counselling Department at MSWA on 9365 4888.
Reference:
www.prochange.com/transtheoretical-model-of-behavior-change
MSWA BULLETIN SPRING 2018 | 13

LONELINESS: THE HIDDEN
COST OF CHRONIC ILLNESS
LIESL MURDOCH, MSWA COUNSELLOR
Loneliness is becoming an increasing problem in the 21st
Century. Recent studies have shown that the effect of poor
social connections and interactions can be harmful to our
health. People who feel lonely, or have few social connections,
have been linked with higher rates of early death comparable
to well established disease states that are usually linked to
poor diets, alcohol and cigarette use, not our social lives.
(Valtorta NK, Kanaan M, Gilbody S, et al, 2016).
We, as human beings are social creatures and do better in life
when we feel connected to others. But in its absence, we feel
a sense of isolation and separation from others, contributing
to feelings of low mood, sadness and even depression.
Ironically, we can feel lonely in a crowd. It is not necessarily
being in the company of others that promotes connection. Our
psychological happiness is enhanced when we feel heard,
understood and bonded with others.
So why is it that when the world is populated by the greatest
number of inhabitants ever that we are experiencing this
loneliness epidemic? It seems a strange thing.
People cite various reasons for their lack of social connections
– being time poor, too busy for friends as their lives are
dominated by work and family commitments. Throw a chronic
illness such as multiple sclerosis (MS) into the mix, where
fatigue often compromises one’s ability to spend time in the
company of others, and the issues of loneliness and a sense
of isolation becomes compounded.
Working as a counsellor with people living with MS, I encounter
the subject of loneliness and social isolation frequently.
Many of my clients disclose they miss the interaction and
connection with others. They go on to say that prior to their
illness they enjoyed a variety of social activities, and had a
wide circle of friendships and acquaintances, but over time
these activities were hindered by their fading physical ability.
Friendships dwindled to infrequent contact or none. A hidden,
and often unspoken and unrecognised cost, of chronic illness
along with the feelings of grief and longing, accompany the
loss of this important aspect of a person’s life. And hence
some find themselves in a chair opposite me speaking and
sharing their experience.
So, what do I say? How do I respond?
I share that what they are feeling is very typical – that many
others living with a chronic illness have experienced something
similar, that they are not alone in their experience of having
to reduce their social participation and have people fade
and disappear from their lives. I reassure them that it is not
their fault but a consequence of unfortunate circumstances.
And I will state that it is within their power to improve and
rejuvenate their social connections by following a few tips.
1. Change up how you see ‘social’ interaction – create
ways of seeing people which conserve and protect your
precious energy levels; instead of going out have your
friends come to you.
• Plan a movie night on your couch complete with popcorn,
fizzy drink and choc tops.
• Enjoy a carpet picnic under the stars in your back yard
complete with your favourite take away meal.
• Host a pyjama party where your friends visit in their
pyjamas and play some old-fashioned games like
Scrabble or Monopoly.
2. Communicate with your friends – educate them about MS
and fatigue. Many people are not aware that fatigue is such
an issue for those living with MS. Having an understanding
that it’s your low energy levels that make socialising
a struggle, dispels the myth that you just don’t want to
see them.
14 | MSWA BULLETIN SPRING 2018

3. Communicate using different mediums – send texts
or Facebook messages, Skype or Facetime; or whichever
app you prefer to use. Even go old school and send a card
or letter in the snail mail! Small acts go a long way to
maintaining connection.
4. Talk to strangers – use everyday interactions to increase
your social connectedness to the wider world. Strike up that
conversation with the taxi driver, the checkout attendant,
the person next to you at the doctor’s receptionist, it may
not be a long-term relationship, but small interactions can
build your confidence and promote wellbeing.
5. Partake in one of the MSWA groups on offer. A variety
of different groups, run by the various departments, are
available to you to join and participate in. This will offer you
the opportunity to meet with others in similar circumstances
– so you already have something in common with them!
Loneliness and social isolation is a problem, but it does
not have to be yours. If you would like further support in
this area of your life I encourage you to contact the MSWA
counselling department and make an appointment to see
one of the counsellors. Go on do it …. Life is for living
and sharing it in the company of others!
Reference: Valtorta NK, Kanaan M, Gilbody S, et al. Loneliness
and social isolation as risk factors for coronary heart disease
and stroke: systematic review and meta-analysis of longitudinal
observational studies. Heart 2016; 102:1009-1016.
HOW TO SUCCEED IN LIFE
BY DR ANDREW E ONG
As we go through life our spiritual self is accumulating a
layer of little hurtful slights, heartaches, disappointments and
betrayals which can cloud our good judgement in a cloak of
mistrust, and in some cases, hopelessness. Let us call this
the cosmic dust of life.
Like all good housekeepers however, a regular dusting is
necessary to make room for happiness and the better things
that life has to offer. Of course, when you stir things up you are
sure to get a little dust in your eyes which may hurt a little, you
may feel sorry for yourself and even bring a tear to your eye.
All of this is natural, for venting your emotions is an excellent
way of ridding yourself of all this unwanted accumulated
baggage. The trick is to let these tears wash away the dust
and restore your vision so that you can get on with living. You
need to know what you are doing, like what you are doing,
and then believe in what you are doing.
Begin your dusting by mastering some simple principles of
human relations. Try never to criticise, condemn or complain.
Learn instead to praise, encourage and look at the positive
side of things before pointing out any problems or faults. Try
to be sympathetic and tolerant. Be kind and understanding
but above all, learn to forgive others and especially yourself.
Give sincere and honest appreciation. Be enthusiastic. Don’t
talk down to people. Instead find out their needs and become
genuinely interested in them. Just be aware that the person
you think is drowning might only be waving to a friend.
Try not to win an argument, because it is rare to win over
the other person’s ‘goodwill.’ Instead use tact, empathy,
diplomacy and try to see the other person’s point of view.
Then thank people for their interest, step back and allow
some thinking time.
These little things are at the core of human understanding.
When you are right, be gracious. If you are wrong admit it
immediately, and then you are in the position to maintain
your self-control by making amends. You can remain calm,
because you can only help people find the answer. You cannot
teach a person anything other than to find themselves. In the
end the best way to win an argument is to avoid it.
Therefore learn to persuade people with gentleness. If
you want to win friends let the other person do most of
the talking. If you want cooperation you must first show
the other person that their ideas are as important as your
own. Finally, and you would think this is the easiest as
every person has one; make a special effort to remember
a person’s name.
MSWA BULLETIN SPRING 2018 | 15

HOW CAN I BE MORE
ASSERTIVE?
EVE PARSONS, MSWA COUNSELLOR
Assertiveness can help us in many areas of our lives. To
be assertive means that we feel confident in personal
interactions, whether responding to demands, asking for what
we want, dealing with criticism, or setting our boundaries.
Lots of people find that they can be assertive in one context,
eg. at work, but find it much harder with family members or
friends or doctors, or vice versa. They need ways to transfer
these skills!
Sometimes people believe that to be assertive means being
aggressive, but this is a misunderstanding. Aggression is a
sure-fire way to alienate people and create a bad reputation
for yourself, even if you ultimately get the outcome you
were seeking. Bullies are aggressive; whereas courteous,
empathic, clear and firm people are assertive.
Why might we be nervous about dealing with others
assertively? Some of our fears can be:
- Fear of being seen as uncaring
- Fear of being called a bully
- Fear of anger or retaliation by the other person
- Fear of being labelled and opportunities blocked eg
promotion at work
- Fear of coming across as selfish, all about you
Interestingly, due to these fears, many of us adopt a passive
or manipulative approach to getting what we want, or to
avoiding what we don’t want. You know the kind of friend who
says vaguely that she’ll get back to you about an arrangement,
then doesn’t? Or perhaps a family member who persuades
you to do something for him by mentioning a favour he did
for you? Being on the other side of these behaviours is just as
unpleasant as being bullied, and most of us would rather be
given a straight answer, or to give a straight answer, such as
‘No, I can’t help you with that.’
Assertiveness can help us in situations with friends, family,
carers, colleagues, health professionals, sports and fitness
buddies, fellow volunteers, retail workers, and members of
our faith community. For example, if you feel you are being
taken advantage of, or treated badly by someone, an easy
formula to remember is:
‘When you do …..X….. I feel …..Y…… so instead I’d prefer…
…Z…..’
Nobody can argue with how you feel even if they didn’t intend
to make you feel that way! You’re the expert on how you feel.
Here’s an example:
“When you ask me to help with chores at 6 pm, I feel guilty
that my fatigue stops me from helping. So instead, please
would you ask me to help in the morning when I have more
energy?”
Another one might be:
“When you say you’re broke and ask if I can lend you $100, I
feel pressured to help you out even though I don’t have enough
money either. So please don’t ask me again.”
Of course, when we firm up our boundaries and state clearly
what we want, the other person might resist hearing us, and
here’s where the broken record technique comes in (for those
of you who remember needles getting stuck on turntables)!
Here, we empathise with the other person’s feelings and
wishes, without getting sucked into fulfilling their request. We
maintain our polite but firm position and repeat if necessary.
It goes something like this:
“Yes, I know you’re down to your last $10, but I’m still not able
to lend you anything.”
“I realise that you are struggling, but I’m sorry (only if you are
sorry – this bit is not compulsory) I can’t help you out.”
“I can hear how stressed out you are, and I know it’s hard, and
I still can’t spare any cash for you.”
Play your broken record until the message gets through!
16 | MSWA BULLETIN SPRING 2018

Why is this so hard for lots of us to do? In general, because we
want to be known as kind, helpful people and not be accused
of being ‘selfish.’ Let’s acknowledge that in our broken
record technique:
“I realise that to you I seem selfish right now, and I’m still your
friend, but I don’t want to lend you money for the reasons I’ve
already said, and that’s why I’m saying no.”
Remember that if someone accuses you of being selfish or
uncaring, it’s usually because they haven’t managed to get
you to do what they want, and you can choose to let those
words bounce right off you.
Think about a difficult scenario which tends to come up
in your life – with your boss, your in-laws, your child, your
partner, friend or helper, and consider whether you could deal
with this person more assertively. Practising how you speak
to them in a role play or even talking to yourself in a mirror,
will help you to find a form of words you are comfortable with,
and say them calmly without blushing or stammering.
Counsellors can also guide you in learning to become
more assertive, and the MSWA counselling team can
be contacted on 9365 4888. There are also lots of good
websites on the internet describing assertiveness
techniques to learn. Go for it!
THE PEER VOLUNTEER
SARAH LORRIMAR, MSWA COORDINATOR OF HEALTH EDUCATION AND PEER SUPPORT
MSWA Peer Support Volunteers are people living with multiple
sclerosis (MS) who give their time to provide support to others
living with MS. Peers provide a unique and invaluable support
which comes from a lived experience. They understand what
it is like to live with MS – receiving the diagnosis, the physical
symptoms, the emotions and all the other things which MS
can bring about.
Peer volunteers are there to answer questions, share their
experiences and help people link in with resources and
services. The role of the peer volunteer is not to say what
they think people should do, or to judge, instead it is to listen
respectfully and privately. For a peer support relationship to
be effective, there needs to be trust and an understanding
that all conversations and the information shared in these
remains confidential.
The support provided by our peer volunteers can be seen in
various forms, some attend groups and workshops to share
their story whilst others provide support over the phone and
via email. People can choose the way in which they provide
and receive support, and it can be done anonymously.
Our peer volunteers are provided with ongoing support from
MSWA and before engaging with other Members, the peer
volunteers meet with the Coordinator of Health Education
and Peer Support to discuss the role, its responsibilities,
and receive and sign a manual agreeing to adhere to the
peer volunteer guidelines. The guidelines which surround
confidentiality, boundaries and communication are developed
to ensure everyone involved feels safe and supported, and to
provide clarity about the purpose of the peer relationship. It is
also a good way to provide support and skills to complement
the experiences and understanding that our peer volunteers
already have.
Engaging in peer support, whether through a peer volunteer
relationship or attending support groups can be hugely
beneficial. With an opportunity to connect with others, people
feel less isolated, they can gain a better understanding of their
diagnosis, feel more at ease and make proactive changes to
improve their health and wellbeing.
If you would like more information about the peer
volunteer role, please contact Sarah Lorrimar on
9365 4858 or Sarah.Lorrimar@mswa.org.au.
MSWA BULLETIN SPRING 2018 | 17

WELLNESS
SARAH LORRIMAR, MSWA COORDINATOR OF HEALTH EDUCATION AND PEER SUPPORT
Wellness involves making positive choices about the way you
live your life, to ensure you are feeling your best. This includes
your behaviours, your lifestyle choices and taking action to
keep informed about your health. It is a process which is
unique to everyone and is something which will continue
to change and evolve over your lifetime. There has been an
increasing interest in the subject of wellness amongst people
living with multiple sclerosis (MS) and although it may require
some added consideration, incorporating healthy lifestyle
choices into your daily life will help you achieve improved
health and wellbeing.
What’s Been Happening
Information Sessions
An important aspect of wellness is keeping informed, by
accessing reliable and relevant information and resources.
Being aware of MS and other aspects of your health, will
help you feel more prepared and confident to make informed
choices about your health and wellbeing.
In June and July, two MSWA information sessions were held
for people living with MS and their support persons. The first
session was tailored for those newly diagnosed with MS and
the second session was open to all. Each session began with
a presentation from Community Access Nurse, Rosie Hunt
which included a general overview of MS, symptom and
relapse management, new treatments and the influence of
a healthy lifestyle. Following Rosie’s presentation, our peer
volunteers Tom and Sonya both shared their experiences of
living with MS, which proved an invaluable inclusion to the
evenings. To close the sessions, a Q&A panel made up of
various allied health team members including Physiotherapy,
Counselling, Nursing, Occupational Therapy, Dietetics,
Speech Pathology and Social Welfare discussed the services
they provide and answered questions from attendees. The
sessions were a great way to share information amongst
health professionals and peers and both received positive
feedback including:
“Great start to a long journey, very positive information.”
“That was excellent, and the speakers were wonderful.”
“Thank you for a great session!”
Move…Breathe…Mindfulness for MS
As I write this, we are halfway through the four -week mindful
movement program run by Cathy Goldie, one of our counsellors
who is also a qualified yoga instructor. Classes are being held
at a small yoga studio in Wangara from 5-6pm. Focused on
movement, breathing and yoga, the postures are adjusted to
suit everyone taking part. With guided breathing, the class is
led through standing and seated yoga postures for one hour
before the session is closed with a meditation in Shivasana
pose. Following the meditation, group Members are welcome
to enjoy a cup of herbal tea and relax in the yoga studio’s
designated ‘chill out area’. Unfortunately, due to the strong
winds and heavy rains in our second week, the class was
cancelled but we look forward to seeing everyone again soon!
Keeping Your Brain Active
Just like exercise for your body, mentally stimulating your
brain helps it to stay active which is particularly important for
people living with MS. Challenging your brain can improve its
ability to adapt to cognitive changes brought about by MS. To
challenge your brain, you could take part in activities at work
as well as leisurely activities such as reading, painting, doing
puzzles and playing board games.
A 3-letter word has been taken out of each of the
following words. Can you figure it out?
B_ _ _TE
_ _ _SE
F_ _ _L
OP_ _ _TE
18 | MSWA BULLETIN SPRING 2018

Managing Stress
Everyday life can bring about a variety of stressful situations,
particularly when living with MS. It is important to find
effective strategies to help manage your stress and help you
deal with the challenges of daily life. This will be different for
everybody and can include catching up with friends, listening
to music, exercising, being creative, yoga and meditation.
Meditation is used to calm the mind and consequently relax
the body. When we are tense, we breathe from the chest
rather than the belly. One way to relax and reverse this style
of breathing is to sigh. Three sighs is a short meditation which
can be done anywhere and anytime and was adapted by
Eric Harrison from the Perth Meditation Centre. This simple
exercise allows you to purposely relax for a few moments.
Eating Well
Protein is one of the major building blocks in our foods, along
with fats and carbohydrates. Proteins are made up of chains
of smaller units called amino acids. When we eat foods
containing protein, enzymes in our digestive tract break up
these chains so that they can be absorbed into our blood and
used in our body.
Protein plays several very important roles in our bodies,
including; forming and maintaining cells, maintaining
muscles, being an important part of enzymes, which assist
many essential chemical processes in our bodies, and
forming blood cells. Adequate protein maintains lean muscle
mass which contributes to strength and stamina, reducing
the risk of falls and injury and improving independence and
quality of life.
Good sources of protein in our diet include:
• Lean meat, chicken and fish (unprocessed is best)
• Nuts and seeds
• Tofu and tempeh
• Beans
• Eggs
• Milk, yoghurt, cheese and dairy alternatives
People of different sex and ages need a different amount of
protein each day.
If you are a male, you should aim for:
3 serves if you are 19-50 years of age
2.5 serves if you are 51 or over.
If you are a female, you should be eating roughly:
2.5 serves if you are 19-50;
2 serves if you are 51 or over.
Here’s how to do it:
Breathe in deeply, opening the rib cage
Sigh: let the breath go without forcing it
Rest in the pause, feeling the belly soften
Wait until you really need to breathe in again
Take a second big in-breath. Feel the chest open further
Drop into the soft, loose out-breath
Pause again and wait
And a third time, feeling everything loosen
Let your breathing resume its natural rhythm. It will now feel
slow, deep and soft
Breathe naturally or sigh gently as you wish
If you are interested in further practice of meditation,
our counsellors are facilitating a mindfulness meditation
session on Thursday, 20 September in Nedlands.
For more information, please contact Sarah Lorrimar on
9365 4858 or sarah.lorrimar@mswa.org.au
Try this tasty protein-rich recipe
from LiveLighter
Lamb Tagine
Ingredients
• spray olive or canola oil spray
• 200g lean lamb, diced
• 1 onion chopped • 1 clove garlic finely chopped
• 1 tsp ground cumin • 1 tsp ground coriander
• 1 tsp ground cinnamon • 1 tsp smoked paprika
• 1 tsp reduced-salt vegetable stock
• 1 400 g can no-added-salt diced tomatoes
• 1 carrot • 1/3 400 g can no-added-salt chickpeas, drained
• 8 dried apricots • 3/4 cup couscous (GF option:
• 3/4 cup boiling water • 1/2 lemon, zest and juice
• 1/4 cup coriander stalks and leaves, optional
Method
1 Spray a large non-stick pot with oil and place over
medium heat.
2 Add the lamb to pan and brown on all sides for 2 minutes,
stirring frequently. Remove from the pan and set aside.
3 Cook onion and garlic over medium-high heat for 3 minutes,
stirring often. Add spices and cook for 1 minute until fragrant.
4 Return meat to pan along with stock powder, tomatoes,
chickpeas, carrots, apricots and coriander stems (if using).
Season with pepper and stir to combine. Cover and allow to
simmer for 20 minutes until vegetables are tender and lamb
is cooked through. Check halfway through and add a little
more water if required.
5 In a medium heatproof bowl combine couscous, lemon juice
and zest and boiling water. Cover and set aside for 3 minutes
or until ready to serve. Fluff couscous with a fork to separate
grains and stir through half the chopped coriander leaves.
6 Divide couscous between serving plates and top with
remaining coriander.
MSWA BULLETIN SPRING 2018 | 19

DOES DIET PLAY A ROLE IN
MS DISEASE PROGRESSION?
DR LUCINDA BLACK, MSWA FUNDED POSTDOCTORAL
RESEARCH FELLOW, SCHOOL OF PUBLIC HEALTH, CURTIN UNIVERSITY
Around 40% of people with multiple sclerosis (MS) make
dietary changes after their diagnosis 1 sometimes to lose weight
and sometimes with the goal of reducing disease progression.
However, there is very little consistency in the types of dietary
changes people make – these range from healthy changes,
such as increasing fruit and vegetable intake, to unhealthy
changes, such as eating more convenience or snack foods.
People newly diagnosed with MS often feel that they are
not given sufficient dietary advice by their health care
professionals. 2 This may partly be due to the fact that research
on diet and MS disease progression has been limited and
often poor quality; as a result, there are no evidence-based
dietary recommendations specifically for people with MS.
However, interest in this area of MS is growing rapidly, and
many studies are under way that will help to answer some of
the outstanding questions. Let’s have a look at the literature
to date.
Omega-3 fatty acids are very important for brain function,
particularly the active forms of omega-3, known as EPA and
DHA. These are the healthy fats we get from oily fish, fish
oil supplements and cod liver oil. We do get omega-3 fatty
acids from linseed, but only a small portion is converted in
our body to the active forms, so linseed is not the best source
of omega-3. Research on omega-3 and MS dates back
to the 1970s, but trial quality was often poor and results
were inconclusive.
Two studies were conducted recently that assessed whether
fish oil supplements might be effective in reducing MS disease
progression. 3,4 Both studies randomly allocated participants
with relapsing-remitting (RRMS) to two groups (treatment
and control group). Participants in the treatment group were
given a fish oil supplement, while participants in the control
group were given a placebo supplement with no active
constituent. After one to two years, researchers reported no
beneficial effects of the fish oil supplements on MS disease
activity. However, one study did show reduced inflammation
in the treatment group compared with the control group. We
know that inflammation is an important factor in MS disease
progression, so reducing inflammation is a helpful outcome.
These studies were considered ‘pilot’ studies, and included
only a small number of participants (

Oily fish (eg salmon, tuna, mackerel, sardines) is the best
dietary source of omega-3 and vitamin D and eating two serves
of oily fish per week is recommended. Try to eat a variety of
oily fish: it doesn’t have to be fresh, tinned fish will still contain
these important nutrients. Avoid processed meats, which
contain unhealthy additives, and limit your intake of other
processed foods, including biscuits, cakes, confectionery,
pastries, pies, commercial burgers, pizza, fried foods, potato
chips, crisps and other savoury snacks, sugar-sweetened soft
drinks and cordials, fruit drinks, vitamin waters, energy and
sports drinks. These are considered ‘discretionary’ foods and
should be eaten only sometimes and in small amounts.
MSWA now has two practicing dietitians on board,
who would be happy to help you make healthy dietary
changes, simply phone 9365 4888.
1
Russell RD et al. (2018) Reported changes in dietary behaviour
following a first clinical diagnosis of central nervous system
demyelination Front Neurol 9:161.
2
Russell RD et al. (2018) Dietary responses to a multiple sclerosis
diagnosis: a qualitative study Eur J Clin Nutr (in press)
3
Torkildsen et al (2012) n-3 fatty acid treatment in multiple sclerosis
(OFAMS Study): a randomized, double-blind, placebo-controlled
trial Arch Neurol 69:1044-51
4
Ramirez-Ramirez et al (2013) Efficacy of fish oil on serum of TNF
α, IL-1 β, and IL-6 oxidative stress markers in multiple sclerosis
treated with interferon beta-1b Oxid Med Cell Longev 709493.
5
Yadav et al (2016) Low-fat, plant-based diet in multiple sclerosis:
A randomized controlled trial Mult Scler Relat Disord 9:80-90.
ANTIOXIDANTS
KAREN HUMPHRIES AND KATELYN CLEMENTS, MSWA DIETITIANS
We hear antioxidants mentioned frequently but do we understand
what they are, and the potential benefits may be? Here we
provide an overview for Members and a delicious recipe.
What are Antioxidants?
Antioxidants are molecules that help to defend our body’s
cells against oxidative damage from free radicals. Oxidative
damage is associated with the risk of several health conditions
including cancers, heart disease, and macular degeneration.
By protecting our cells from damage, antioxidants also help to
slow the body’s aging process.
Some of the antioxidants that we can get from our diet
include: vitamin C, vitamin E, beta carotene, selenium, zinc.
manganese, copper, flavonoids, carotenoids, phytochemicals,
and several enzymes.
Where do antioxidants come from?
There are many different antioxidants. Some we make in our
body, while others come from food, drinks (like tea and wine)
or supplements. In general, antioxidants are better taken in
the form of food, especially vegetables and fruits. Eating a
variety of different fruits and vegetables not only supplies
our bodies with plenty of antioxidants, but also lots of fibre,
vitamins, and minerals. Cooking with herbs and spices will
also help to boost your antioxidant intake.
Including plenty of fruit and vegetables in your diet will provide
you with the protective effects of antioxidants. Eat the rainbow!
Be sure to include a wide variety of coloured fruits and
vegetables as they provide different kinds of antioxidants. The
stronger and more vibrant the colour the better. Try to include
reds, oranges, yellows, greens, browns and blues/purples.
See below for a list of some nutritious vegetables and fruits
that are in season in spring.
Vegetables
Beetroot
Asparagus
Avocado
Chilli
Red onion
Carrot
Peas/snow peas
Rhubarb
Fruits & Berries
Orange
Grapefruit
Lemon
Lime
Mandarin
Mango
Paw paw
Silverbeet
Tomato
Sweet potato
Broccoli
Zucchini
Spinach
Herbs
Blackberries
Blueberries
Raspberries
Strawberries
Apple
Plum
Boysenberries
Capsicum
Brussels Sprouts
Broad beans
String Beans
Squash
Pumpkin
Eggplant
Honeydew melon
Passionfruit
Persimmon
Watermelon
Peach
Banana
Rockmelon
Crunchy Green Salad
Ingredients:
• 15 punnet sugar snaps • 120g rocket leaves
• 1 small head of broccoli • 1 medium zucchini
• 15 green beans • 1 avocado • 2 sprigs of mint
• 3 alfalfa sprouts • 2 tbs olive oil • 1 tbs lemon juice
• Black pepper • Salt
Method
Top and tail the zucchini. Using a peeler, peel the zucchini
lengthways to make long thin strips.
Top and tail the green beans and cut the broccoli into small
florets. Steam the beans and broccoli for 2 minutes and
refresh in cold water.
De-string the sugar snaps and keep whole or cut in half if large.
Slice the avocado.
On a flat platter or large bowl, arrange the rocket and mint
leaves. Add zucchini ribbons, broccoli, green beans, sugar
snaps, and avocado; then top with alfalfa sprouts. Drizzle
olive oil and lemon juice over the salad and season with salt
and pepper.
MSWA BULLETIN SPRING 2018 | 21

FATIGUE
ROSEMARIE DRAVNIEKS, MSWA MANAGER OCCUPATIONAL THERAPY
Fatigue is often referred to as a hidden symptom of multiple
sclerosis (MS). Estimates vary but it is considered to affect
between 60% – 80% of people with MS, the most common
reported symptom affecting people with MS.
Fatigue is not the same as tiredness. Tiredness is a normal
experience for everyone and is usually resolved by getting a
good night’s sleep.
Fatigue on the other hand is the experience of a daily lack
of energy and overwhelming tiredness that is not resolved
by sleep. This level of fatigue can have a severe impact on
a person’s normal day to day functioning and therefore their
quality of life.
So, what can you do about it?
If there is an additional underlying medical cause for
your fatigue, this needs to be addressed by your treating
doctor, however there are some steps you can take to help
manage fatigue:
• Assess your available energy levels – think of your
personal energy like a bucket. If you take something out of
the bucket it needs to be refilled or it will run dry. This may
be tracked over the course of a day or a week depending
on what works for you. You may want to keep a diary for a
week to see if there are patterns or triggers to your fatigue,
what activities fatigue you etc. Also see what activities reenergise
you.
• Be aware of your own warning signs that indicate you
are getting fatigued and act early. Some of the signs you
may have include tired eyes, heavy legs, general tiredness,
stiffness in shoulders, lack of concentration, poor balance,
weakness or feeling ill, unmotivated, sleepiness, increased
irritability, increased anxiety, feeling impatient and so on.
It’s important to rest rather than try and push through these
signs; you will recover quicker.
• Conserve your energy for the activities that are important
to you:
– Plan and organise your work day/week
– Delegate tasks to others when possible
– Schedule in rest breaks before you become fatigued.
Regular short breaks are more beneficial that one long
break after a long period of activity
– Pace yourself – Try not to rush activities at the beginning.
Alternate between sitting and standing when you can
– Use good body mechanics to reduce strain on our body
– work without bending over, when lifting use your leg
muscles to lift not your back, move items in several small
loads rather than one large load, or better still, use a
trolley to transport items, avoid reaching overhead
• Eat Well – fatigue can be made worse if you are not eating
enough or if you are not eating nutritious energising foods
• Exercise – Reduced physical activity can make you feel
worse and more fatigued. If you stay active within your
limits, such as regular moderate exercise, this can increase
your feelings of energy
• Sleep well – poor sleep will make your fatigue worse
• Dealing with heat and humidity which often aggravate
MS related fatigue you can:
– Drink cool water
– Stay inside during hot times of the day
– Wear breathable clothing
– Consider use of cooling vests/neck ties
22 | MSWA BULLETIN SPRING 2018

• Manage your stress – Feelings of stress can increase
feelings of fatigue. Some suggestions for managing stress
include:
– Adjusting your expectations – if you have 10 things you
want to do, reduce this down to two to three things and
schedule the others for another day
– Talking to family members/friends to help them
understand and be able to help you
– Speaking to other people with MS to get support and
ideas– strategies they use to manage stress and fatigue
– Relaxation techniques
– Recreational activities – can help to divert your attention
from fatigue as well as re-energising you. It needs to be
something you enjoy without requiring large amounts
of energy, such as listening to music, reading, knitting
and so on
MSWA provides information about fatigue and a range
of options to assist you in fatigue management. We have
education sessions depending on your individual needs
ranging from one-on-one advice, short presentations,
half-day workshops and a six-week education program.
These programs are more detailed and help you to better
understand MS fatigue and identify strategies to help manage
it. There is the added benefit of meeting others and sharing
ideas and supporting each other, as you are facing the same
issues.
We also have a Fatigue Management App MS Energise
available that can be uploaded to Apple devices. This is a
self-paced fatigue management program.
Over the coming months we will be offering some short
information sessions on fatigue at various Outreach locations,
scheduling some half-day workshops in both metro and
Bunbury locations.
If we have sufficient interest, we will run a six-week program,
commencing once a week from Tuesday, 16 October to
Tuesday, 27 November.
If you are interested in getting more information on how
to manage your fatigue, please contact the Occupational
Therapy Department us on 9365 8888 to discuss the best
option for you.
COGNITION
GEMMA MILENTIS, MSWA OCCUPATIONAL THERAPIST
We use our cognition every day, in fact, you are using it right
now to read and comprehend this article. But what exactly is
cognition? And is there anything we can do to minimise the
effects of cognitive changes in our daily lives?
Cognition refers to all aspects of memory and thinking.
Approximately 50–70% of people living with multiple sclerosis
(MS) experience some problems with cognition. Whether it
is forgetting a few appointments, finding it difficult to focus
and maintain attention, recognising objects and/or people, or
learning and recalling new information. As it is with the physical
symptoms of MS, the effects of cognitive change are different
for everyone.
Cognitive changes can be subtle and can be mistaken as the
person simply ‘not listening.’ Research shows that most people
with MS who experience a change in their cognition, start to
notice a change when it becomes difficult to read a book, or
follow a conversation with more than two people involved. It
can be said that the most common area of change is the speed
at which a person can take in and process information.
There are several factors that impact a person’s cognition,
other than the changes that occur within the brain. These
include fatigue and tiredness, emotional stress, relapses,
physical restrictions, medication, hormonal changes and
lifestyle changes. When people are depressed or feeling low,
they can suffer memory lapses or problems with concentration.
So, what are some tips that
you can follow to keep your
brain healthy?
• Exercise
• Mental Stimulation – read, do crosswords
• Nutrition – eat well
• Social supports; stay connected socially
• Vitamin D
• Treatment for mood disorders
• Quality sleep is vital for good brain health
• Cognitive strategies; use lists or reminders – be organised
Lack of participation can also impact cognition as the brain is
not being stimulated. This is where our OTs can help!
The MSWA Occupational Therapy department can provide
advice and compensatory strategies to help manage cognitive
changes. As no two people are the same, our OTs will work to
provide an individualised approach focusing on your lifestyle
and priorities.
We are also looking at running five-week cognition group
to provide a more in-depth discussion into cognition. More
details to follow closer to the date!
If you are interested in learning more about cognition
and trialling some strategies to manage change,
please contact one of our Occupational Therapists on
9365 4888 to express your interest.
MSWA BULLETIN SPRING 2018 | 23

UPDATE ON
MSWA FACILITIES
SANDRA WALLACE, MSWA MANAGER STRATEGIC SUPPORTS
Here is a brief update on the progress of our expanding
facilities and development of new and existing sites at MSWA.
WILSON – the full refurbishment was completed at the end of
July. We had five months of construction and building and at
times it was very dusty and noisy. The result is a fresh, open
look and feel that is lovely to be in! There has been some
movement of staff to new office locations within Wilson, to
promote efficiency and enable larger teams to be centrally
located. We have gained a larger physio gym, new massage
rooms and 36 extra desk spaces.
Members returned to their outreach programs from 31 July.
It is good to see them back here once again. The whole site
has taken on a fresh new look and somehow everything looks
bigger, and it all matches! Please feel free to visit us and have
a look.
KELMSCOTT – The fit-out of new premises in Kelmscott
is well under way, we expect to be open for business by
mid-September. These premises will offer office space for
meetings and consultations, counselling, and physiotherapy.
Parking is easy as it is situated in a group of shops, at 2938
Albany Highway, Kelmscott. If this may be of benefit to you,
please speak with your therapist for details and the relevant
program times.
BUTLER – construction is making very steady progress and
already is at lock-up. This site will be completed at the end
of the year and opening early 2019. The large services hub
is really taking shape and the high support accommodation
units will benefit from separate communal spaces for
entertainment and dining.
ALBANY – great news, we have a site under offer, and are
awaiting the outcome. It is a long process, but we will provide
details when possible to do so. This will include both high
support units and a service hub.
BUSSELTON – ongoing negotiations; delays have gone
beyond our control but should be resolved soon.
SHENTON PARK – we are awaiting the Governments
allocation of the title before we can progress but we will be
building high support accommodation units on this site.
PRESSURE MAPPING
EMMA CLIFFORD, MSWA OCCUPATIONAL THERAPIST
The Occupational Therapy department will soon have a
pressure mapping system to supplement services provided
for seating and positioning for those using wheelchairs.
The highly sensitive mat allows the therapist to accurately identify
areas of the body that may be at risk of developing pressure
injuries when seated in a wheelchair or recliner. The mat is placed
on the seating surface and, when the individual sits, a real time
image of pressure distribution is displayed on a screen allowing
the therapist to identify areas of increased pressure.
This assessment allows the occupational therapist to do the
following;
• Identify the need to review the current seating surface
• Select or eliminate different seating surfaces during trials based
on individual need and the outcome of pressure mapping
• Justify the need for
different seating surfaces
and provide an accurate
measure for funding bodies
to consider when applying
for funding of equipment
• Discuss with the individual their own risk of pressure injury
and develop a plan together
• Record reliable data to develop an effective pressure
management plan if required
If this is something you would like to access, please
speak with your allocated Occupational Therapist or
contact the department on 9365 4888.
This valuable addition to our equipment has been made
possible through our MSWA fundraising efforts. Thank you!
24 | MSWA BULLETIN SPRING 2018

EMPLOYMENT
AND MS
SUE SHAPLAND, GENERAL MANAGER MEMBER AND SERVICES
Being employed has benefits beyond just purely financial – it
can improve quality of life, provide social interaction and give
us a sense of purpose.
Over the years MS studies showed that people with multiple
sclerosis (MS) were much more likely to fall out of employment
than people with other chronic conditions and the general
population. The financial impact of reduced employment for
people with MS places a substantial burden on individuals,
families and the wider community.
A paper published from the Australian MS Longitudinal Study in
2013 provided insight into the causes for loss of employment;
it wasn’t just about accessibility or unsupportive employers,
but poor symptom management was shown to have a real
impact of staying in the workplace. Hidden symptoms such
as fatigue and urinary problems were likely to have a negative
impact on staying in the workplace.
Recent Australian research has shown that more effective
disease-modifying therapies are associated with increases in
the amount of work, work attendance and work productivity.
At MSWA we provide information and individual support for our
Members regarding many aspects that can impact on them
remaining in the workplace, reducing hours or re-entering
the workforce after a break. Our Health Education Officer
arranges evening information sessions with guest speakers
from Maurice and Blackburn, speaking about disclosure
of your MS, your workplace rights and how to access your
superannuation insurance policies if you need to exit the
workplace due to your MS. Other issues regarding income
and benefits can be discussed with our social welfare team.
Depending on what funding you have available for services,
our OTs can refer you to Job Access for a workplace
assessment to improve your workspace and provide advice
on any adjustments, aids or equipment that may be of
benefit, or direct you to services that can look at these issues
for you. Job Access are also able to advise on and organise
Government funding to support workplace modifications and
the purchase of equipment that may be required. Funded
OT services can also provide advice on accessing disability
employment support agencies, who are funded to assist
people to return to the workplace and /or re-train.
Our MS nursing team can support you with effective symptom
management strategies and information and advice about
your MS. We can also link you with expert providers.
There are so many supports available and the MSWA
team is here – we are just a phone call away – 9365 4840
or email us at Get-in-touch@mswa.org.au
YOUNG DAD’S JOURNEY WITH MS
Life was carefree and easy for Matt Nichols, a healthy young
man who worked in a glass factory with the world at his feet.
But in 2007, after telling his doctor he had been experiencing
fatigue and dizziness at work, Matt was stunned to learn he
had multiple sclerosis (MS).
“When my doctor confirmed my diagnosis, I didn’t know
what to think. I found it very confusing. Someone suggested
I call MSWA and they were fantastic. Their nurses helped
me understand the condition and since then, I’ve felt very
supported.” Matt said.
Now 44 years of age, life is starting to look up for Matt. He
currently works as a cleaner four nights a week and cares for
his six-year-old daughter, Willow.
Willow is his continuous source of inspiration. “She’s full of
positive energy and always there to give me a hug when I
need it. I’m hoping that one day, I won’t need my crutches, so
I can hold her hand while walking down the street.”
Over the last 11 years, Matt has
faced other symptoms such as
fatigue, memory lapses and heat
intolerance. It was his struggle
with heat that prompted his move
to Busselton in 2014.
“Moving has had a really positive effect.
You wouldn’t think that between Perth and Busselton there
would be much of a difference climate wise, but just those
few degrees make a big difference for me.”
MSWA’s presence in the South West region has had a huge
impact on his life and has supported him throughout his
MS journey. Matt accesses physiotherapy, massage and
counselling at MSWA’s local facility.
“MSWA have been there for me every step of the way. I’m
currently using crutches to get around, so having one
facility catering to all my needs, means it will be easier
to access my vital services under the one roof.”
MSWA BULLETIN SPRING 2018 | 25

THE ARTIST
WITHIN
ROS HARMAN, MSWA MEMBER
“Learn the rules like a pro so you can break them like an artist.”
Salvador Dali.
I visited the annual Year 12 art students’ exhibition at the
Perth Art Gallery recently. The displayed works were amazing.
They were meaningful, beautiful and so, so skilful. I was very
impressed.
I’d like to be an artist. Goodness knows I’ve tried over the
years but there comes a point in your life where you have to
face the truth: Monet I am not.
When I was a child I would sit at the kitchen table with water
paints and butcher’s paper painting boxy figures with stick
legs and large eyes. During my teens in the seventies, I turned
to macramé and crochet, starting ambitious pot plant hangers
and crocheted bikinis. One year I convinced my mother to buy
me a large quantity of purple raffia for what was supposed to
be an incredibly beautiful wall hanging. That never-finished
purple tangle ended up buried in the depths of a hall cupboard
until it was finally thrown out when my mother moved house.
University, marriage, multiple sclerosis (MS) and motherhood
got in the way of my artistic career for a couple of decades, but
I did attend a mosaic tiling course with a friend at some point
during that period. I decorated a plant pot with multicoloured
tiles, and gave it to my mother for her birthday. I know her
well enough to know that the enthusiasm and thanks she
expressed were not genuine. Next time I visited her I searched
around for ages until I finally found it at the bottom of her
beautifully manicured garden behind some shrubs. Neither of
us ever mentioned it again.
I picked up a paintbrush again in my 40’s when I attended a
social painting group. I daubed acrylic paints on canvas in an
attempt to recreate scenery from photos, but the results were
not inspiring. I have not hung these pictures on my wall, but
have them hidden behind some boxes in the spare room. I
enjoyed the conversation and morning tea, though.
When I was invited to join an art/craft group at MSWA I
wondered if my time in the spotlight as an artist was finally
coming. The group is called ‘Embrace the Shake’ and is
intended to encourage creative expression in a supported
environment among people with MS who have a tremor, or
other difficulties with their hands. Actually, my hands are
fine but they didn’t seem to mind me joining in anyway. I
have discovered that it takes more than good hands to make
a masterpiece but we have fun and we have cake for
morning tea.
I have a few excellent artists in my extended family.
My elderly mother painted some very pretty watercolour
flowers when she was younger. My brother-in-law, as well
as being an excellent photographer and cameraman, paints
lovely landscapes. A niece and a couple of nephews are
skilled at drawing and are creative visual artists. Obviously
the artistic DNA avoided me when I was born.
I have had one moment of artistic success. Our group had
an outing one day into the bush where we discovered some
paperbark trees. We cautiously stripped a bit of bark off one
that had fallen over. Back at the art room I selected a piece,
added a couple of squiggles with black pen and put it inside
a frame I found, and lo and behold – a landscape! I have my
bark painting on my sideboard in my living room, and just nod
modestly when guests and visitors compliment me.
Art is good for you, apparently. “Art develops the whole
brain. It is proven that art increases attention, strengthens
focus, requires practice, develops hand-eye coordination
and interacting with the world using mediums and tools.”
(Obxartstudio.com) I did some research and there are lots of
quotes by famous artists. Jackson Pollock of Blue Poles fame
stated that “Painting is self-discovery.” Don Miguel Ruez said
“Every human is an artist.” That may be true, but I note that
famous Impressionist Henri Matisse once said “Creativity
takes courage.” I know that is true.
I don’t think I am going to make my mark on the world
through painting. I think I’ll stick to writing. But I will
keep going to our art group. I enjoy the morning tea.
26 | MSWA BULLETIN SPRING 2018

THAT’S LIFE
WITH NARELLE
NARELLE TAYLOR, MSWA MEMBER
MSWA has arranged and provided me with so much
assistance, in so many forms, since I joined 22 years ago. I’ve
had lots of support workers who have helped me be good at
whatever role I was enacting at the time. I’ve grown fond of,
become grateful to, and been respectful of them, as I’m sure
they must have come to be of me, and now some of them hold
places in my memory like friends, or family members.
When I was alone at home, my children had married and
moved out, my husband had died, I was swanning about in
a place that was far too big for just one person. The support
workers would come more frequently because I needed their
help more frequently. It dawned on me that a ‘care facility’
would do everything the carers were doing, and I’d be able to
go out and come back, the bed would be made, the washing
would be done, the food would be cooked, and I would not
have had to supervise any of it.
My support worker comes here now as ‘social support,’ and
the staff here do all the other stuff. It suits me very well.
Some support workers at home had been coming for years.
One even came to be ‘social support’ at this facility when I
had moved here. My transition away from home, because I’d
chosen to do it, was not as confounding and worrisome for
me, as it seems to be for so many of the other residents here.
Ageing alone separates the individual a little bit from the
mainstream of society and then, for them to be locked into
a place like this, for their own safety of course, is so far from
their understanding. It’s so often a topic of conversation with
them. Even those residents that are now spoon-fed and in
a ‘transporter chair’ will sometimes grizzle that they could
manage at home alone and will talk of their inability to fathom
why they’ve been incarcerated.
I speak with them about it as if I am dealing with a child.
Because of their attitude, I then file them in the category of
those residents whom I’m not going to include as a close
friend. I still like them, but it’s one-way traffic. They’re out of
time with life’s background music.
One resident who has Parkinson’s, but is walking, came with
me to a nearby coffee shop. We made our way there, me in my
power-chair, and her holding on to the back of it. We crossed
two roads then arrived and enjoyed our cake and cuppa.
The young table attendant then helped us negotiate safely
past other tables and chairs, back out onto the footpath. Doris
resumed her position behind my chair and the waiter said,
“well, there you are ladies, all set to go. What are you going
to do today?”
I thought, “we’ve just done it!”
I said, “well, Doris and I spend a lot of time in the laboratory,”
he just nodded his head. He knew it wasn’t true and I hope
he realised that his question was not suitable for Doris
and I. He’s always very nice to me now and I usually go there
for morning tea with my support worker and he always serves
us with a pleasant alacrity.
I am proud of the way my support worker and I can get around.
We can go almost anywhere. The world is becoming more
wheelchair-friendly. It’s my oyster! Comparatively speaking,
we are so good. I heard recently of young sportsmen, soccer
players actually, who each needed to be sedated and wrapped
up like parcels in order to get back on track and go home. I’m
sure they’d be impressed with our form.
MSWA BULLETIN SPRING 2018 | 27

FUNDRAISING
NEWS
MSWA BRAND AND COMMUNICATIONS
2018 MSWA Annual Dinner Auction
On Thursday, 16 August the Board of Directors hosted the
MSWA Annual Dinner Auction at the stunning Fraser’s State
Reception Centre.
This event allows MSWA to thank our supporters while raising
much needed funds for Western Australians living with multiple
sclerosis (MS) and all neurological conditions. The event is not
possible without the ongoing support of our community and
donors, and thanks to their continued efforts, we raised just
under $100,000 dollars, breaking last year’s record.
It was a beautiful evening and State Reception Centre, Kings
Park played host to 300 guests including Members, dignitaries,
sponsors and staff. The night included a panel interview with
MSWA CEO Marcus Stafford, MSWA Member Chloe Baker
and MSWA funded researcher Professor Prue Hart. They gave
the audience an insight into life with MS and the world-first
research offering hope to people living with MS.
Our main auction items had a great response and got the
bidding war started. To name a few, there was a luxury
escape to Larry Cherubino Winery in Margaret River, a holiday
for two to Europe, and an exclusive tour of the Channel
Nine Studio followed by dinner at Point Bar and Grill with an
on-air personality.
We were very pleased to announce the MSWA Annual Dinner
Auction 'Commitment Award' winners. Central Park won the
business category award for their incredible commitment to
our annual Step Up for MSWA, and the 2018 World MS Day
activities. While the individual category award was presented
to Andrea & Vlad Martinovich who have been supporting
MSWA since 2011.
MSWA Individual Commitment Award winner, Vlad Martinovich and
MSWA President George Pampacos.
Guests checking out auction items.
Once again, thank you and congratulations on another
successful night which brought together MSWA Members,
Clients and the Western Australian community.
MSWA Ocean Ride – Sunday, 25 November 2018
Now in its ninth year, the MSWA Ocean Ride – Powered by
Retravision is the only community bike ride event of its kind
within the metro area.
The event has grown in numbers of participants, and now
includes five ride distances to cater for all ages and capabilities,
as well as a special Members’ Ride for MSWA Members.
Join us today and put your body - and bike - on the line!
Your support will make a difference to Western Australians
living with MS and all neurological conditions.
To find out more visit www.mswaoceanride.org.au
28 | MSWA BULLETIN SPRING 2018

STRAY CATS THEATRE COMPANY
PRESENTED SHREK THE MUSICAL
SALLY NEWMAN, MSWA MEMBER
Sometimes all we want to do is run and hide from reality.
We want to pretend we have no responsibility, no disability, no
housework and no bills. Imagine if life could be just a simple
and fun fairy tale? Well thanks to community theatre it can be.
Once upon a time in this instance, was a colourful and
mythical story on the stage of Mandurah Performing Arts
Centre, when Stray Cats Theatre Company presented Shrek
The Musical. A cast of experienced and skilled actors brought
the Dreamworks classic to an excited audience of all ages.
For those who do not know the story of Shrek, here is the
simplest overview I can offer. Shrek is an ogre – fat, green and
smelly (consider him our disability). Donkey is a humorous,
sarcastic and loveable ass who makes everything in life funny
(even the tough times). And Fiona the princess is the beautiful
damsel, trapped in the tower awaiting a prince to rescue her,
so she can fall in love and live happily ever after. Oh, to be that
beautiful princess!
The production was led by Director Karen Francis, Vocal
Director Kristie Gray and Musical Director Vanitha Hart.
Larger than life actor, Nicholas Gaynor brought the character
of Shrek to life and his onstage presence teamed perfectly
with the comedic Donkey, portrayed by Jiojo Nawanawa. And
of course, that beautiful princess played by Lisa Taylor.
An ensemble and lead cast of more than seventy people
presented a professional, well executed production and should
be very proud of their interpretation of Shrek The Musical.
Act two saw Shrek and Donkey become friends and on the
King’s order, set off to rescue the princess; she is horrified
to discover her knight in shining armour is an Ogre. Alas, as
the story unfolds and love’s true kiss brings them together –
Princess Fiona also turns into a fat, ugly, smelly ogre.
So why did I review this musical theatre show for our Spring
Edition? Because Shrek reminds me of living with multiple
sclerosis (MS). Life is not a fairy tale, but we can find
goodness and laughter.
Disability can be perceived as smelly and unlikable and
somewhat ugly! I feel like nobody understands me, and I am
sure I am not alone when I think, “I am living in a swamp land,
somewhere completely unfathomable to others.”
Of course, to other ogres like me, they see my world as
just fine!
And then the ‘disability’ meets someone ‘normal’ and they fall
in love. Love sees past the physical self and into the heart of
the ogre, and even though I feel like an ogre, I know inside I
am a still a princess.
Why not visit www.manpac.com.au for a full listing of
their 2018/19 season and escape reality for just one night.
Mandurah Performing Arts Centre is a quality venue with
ACROD parking bays, all access toilets, theatres and foyers.
The adjoining boardwalks also have ramps and railings
for ease of access for you to enjoy the beautiful estuary
and nearby cafes. The venue also honours the Companion
Card WA Program which makes for a hassle-free, night of
entertainment for you and your carer/companion.
When will your ‘Once Upon A time’ become a reality.
Discover community theatre soon.
SPEECH PATHOLOGY WEEK 2018
CASSANDRA THOMAS, MSWA SPEECH PATHOLOGIST
Speech Pathology Week takes place on Sunday, 19 to
Saturday, 25 August 2018. The theme for Speech Pathology
Week in 2018 is:
Communication access is communication for all!
More than 1.1 million Australians have communication or
swallowing disorders which adversely affect their ability to
undertake everyday activities and participate successfully in
social interactions.
Speech Pathology Week seeks to promote the speech
pathology profession, the work done by speech pathologists
and the role they play in the lives of Australians with speech,
language, communication and swallowing difficulties.
During Speech Pathology Week the MSWA speech pathologists
will be talking to Members and Clients at Outreach about the
profession and services that can be provided to them.
The department will also be running weekly word finding
groups throughout the year. These sessions are designed for
people with neurological conditions and will focus on;
• The provisions of educational information in word finding
difficulties
• Group sharing and discussions
• Strategies to assist with word finding difficulties
• Practical activities to use at home
For further information on groups or other speech pathology
services please contact the department on 9365 4888.
MSWA BULLETIN SPRING 2018 | 29

VOLUNTEERING
DAWN BURKE, MSWA VOLUNTEER COORDINATOR
Where does the time go, I can’t believe I’m shouting out hello
to you all again for the 2018 Spring Edition of the Bulletin.
I’m not sure about you, but my feet hit the ground running at
the start of the year and I’m having trouble with the rest of
my body catching up. Luckily spring is on its way, and it will
be time to stop and smell the roses, which hopefully means
things might slow down a little.
So much happens over the months between Bulletins, it
is hard to remember it all. National Volunteers Week just
happened when I last wrote to you, and both events in Perth
and Bunbury went well. It was very special having our CEO
Marcus Stafford attend the volunteer luncheon in Bunbury
recently. This event is usually low key and a bit more casual
compared to our Perth event. The luncheon was held at
Backbeach Café and had a real vibe and lots of noise in the
background; such a beautiful venue which appears to be
extremely popular with the locals.
I thought I would share some statistical information regarding
National Volunteers Week all over WA. Did you know, in WA
alone, there were 235 celebrations held to recognise and
thank volunteers and 16,129 volunteers attended these
events. The breakdown of these celebrations looks like
this; Kimberley Events four, Pilbara six events, Gascoyne
two events, Midwest eight events, Goldfields nine events,
Wheatbelt 19 events, Peel 14 events, Southwest 23 events,
Great Southern seven events and Perth 131.
Let’s not forget those who couldn’t attend an event or live
in areas where an event wasn’t possible. We Western
Australians, should be proud of all those people who put
others before themselves and give back to the community.
We are especially fortunate at MSWA to have over 250
people volunteering with us in both our Member Services and
Events teams.
We had one of our annual Members camps at Moore River on
28 May, which went off with a bang as usual. Our numbers
are getting larger for this camp every year, which is great to
see. Lots of fun, activities, laughter, great food and games.
Again, I had the privilege to attend this camp as did three of
our MSWA volunteers. I would like to thank Rosalind, Mike
and Jacqui for coming along to help. The difference you make
is immeasurable and we appreciate the time you take out of
your week to attend, as it isn’t a day here and there, it’s for
the long haul – four days and three nights.
Jacqui came from Bunbury and had a long day travelling each
way. It is great having volunteers attending camp and if any
of you are ever interested in volunteering on camp or know
of anyone who would, please contact me and we can discuss
it further. As I always mention, I would like to thank the staff
that attend, especially our cook, Kylie and her lovely assistant
Rhonda. It was the first time for both of them and feeding 25
hungry people is a feat all on its own, let alone doing it three
times per day.
The biggest news I would like to share, is that the
refurbishments of our Wilson facility are all completed, and
it is looking pretty fine. Thank you to all who have been
affected throughout this transitional stage; the flexibility and
enthusiasm in which volunteers, Members and staff have
dealt with the upheaval has been amazing, and as you can
see, it was worth the effort. ‘No pain, no gain,’ isn’t that
how the saying goes? In no time at all it will be like nothing
happened and we will be wondering what all the fuss
was about.
I would like to make a special mention to Lesley Pitt and Lynn
Hoonhout for coming in over the final week of preparation of
the unveiling of the Wilson facility, to set up the craft area for
our volunteers and Members. Many of the staff have been
working hard bringing it all together and have gone over and
above their normal duties. Thank you all, it is the team spirit
that keeps us motivated and working towards one goal. As my
husband likes to continually remind me, there is no number
one in team.
Trish Watson from our events team would also like to
share a few words:
It has been a busy year for the events team. We kicked of the
year with the new Albany Ride, which was well received along
with the long-standing Albany Swim in February.
This was followed in Perth by a fantastic World MS Day, we
had a great turnout for the Street Appeal along with the Hip
Hop Yoga in the park.
Step Up for MSWA saw a record number of people take up the
challenge to climb to the top of Perth’s Central Park building.
These events would not be possible without the help of a
dedicated bunch of volunteers, so we would like to take this
opportunity to say a big THANK YOU to all the Members and
staff who came along to support our events.
30 | MSWA BULLETIN SPRING 2018

We have our MSWA Ocean Ride coming up in November, so if
you would like to lend a hand feel free to contact Trish Watson
on 6454 3116 or for any general questions about events,
please call 6454 3131.
Thanks Trish. It’s fantastic what our events team does to
promote awareness of multiple sclerosis (MS) and also
raising funds to support research and people living with a
neurological condition. These funds enable MSWA to make
their lives that bit better as your work is amazing.
Last and certainly not least, I would like to personally thank
every one of our volunteers at MSWA. You are an inspiration
to us all, and the difference you make, is HUGE, no matter
how much time you give. Remember the statement ‘give a
little, change a lot’ that’s all it takes to make a difference in
someone’s day or their lives. For this, I truly thank you from
the bottom of my heart.
As always, my door is open, and I hope to see you. If
you would like to discuss any further volunteering
opportunities or if you have any feedback don’t hesitate
to call me 9365 4888 or send an email to volunteer.
coordinator@mswa.org.au.
That’s all for now, take care, enjoy the warmer weather and
see you around.
Until next time
ARTSY CRAFTY WEDNESDAY AT WILSON
ZURAINI HUSSAIN, MSWA CARE SUPPORT WORKER WILSON OUTREACH
After a few months of renovation, our Wilson Outreach is
now back to business as usual. With the new fresh looks of
our lounge, craft room and dining area, the rooms are just
fantastic.
Since the craft area will be back under Outreach supervision,
we are thinking of making full use of this area. At the moment,
every Monday we have the ‘Embrace the Shake’ group
occupying the room, followed by card making on Tuesdays
and art/paintings on Thursdays.
Now, we hope to add ‘Artsy Crafty Day’ on a Wednesday; I
have already been talking with some Members and they are
keen to join in.
At the moment we have a few
‘Artsy Crafty’ ideas such as
mosaic, alcohol ink art and
paper quilling, but those are
only a few of the exciting
ideas so far. Any ideas are
most welcome!
We always welcome new
Members to come and visit
us at Wilson Outreach and participate in our activities or
to come for socialising or even just a coffee!
Please feel free to contact our Wilson Outreach
Coordinator, Nicola Ryan at nicola.ryan@mswa.org.au if
you have any queries or you wish to come in and see
what it’s all about.
SOUTHSIDE OUTREACH FRIDAY GROUP
ANGIE WALLACE, MSWA MEMBER
Our group will once again have a syndicate to buy our tickets
in the next MSWA Mega Home Lottery. With most Members
sharing in the purchase of eight tickets we are once again
filled with optimism!
Angie and John are excited about having their Japanese family
(including two young school-aged children) staying with them
for a year while their son studies at ECU. The granddaughters
have had a challenge coping with a new school, different
education system, English language etc. It’s been good for
Grandma’s multiple sclerosis (MS) brain to keep up with all
this new learning alongside the children.
Member Helen is counting the days before she heads off for
a Canadian holiday of a lifetime. Her new double-duty walker
that converts to a wheelchair will prove invaluable! Looking
forward to some great photos, Helen.
Craft is popular with
Members – activities include
everything from key rings
to 3D photo frames. Cheryl
and Graeme enjoy putting
together mind-bogglingly
tiny mini-jigsaws each week,
while Graham and Jacqui have
a go at Rummikub.
Get better soon Jerry – we miss your infectious laugh!
A big hello to a few of our former Members (Michelle,
Doug, Peter) who are now part of the new Mandurah
Outreach group. Welcome to new Member here, Michelle.
We hope you enjoy the fun and activities and friendly
vibe of our Friday Outreach.
MSWA BULLETIN SPRING 2018 | 31

ROCKINGHAM TUESDAY OUTREACH GROUP
PETA MCCORMACK-LUCKINS, MSWA CARE SUPPORT WORKER
The Tuesday Outreach group in Rockingham is very alive and
well! The Members who attend every week thoroughly enjoy
the lively chatter, each other’s company and the inventive
craft activities!
Recently they have started diamond painting and have also
created button bowls and 3D photo frames!
A beautiful home-cooked lunch is served fortnightly
by Rosemary the cook, and she is supported by Sherril
the kitchen volunteer. The alternate week we share a
morning tea!
Some themes the group have enjoyed this year included an
amazing high tea to celebrate the Royal Wedding, which was
held in March, and Christmas in July with all the trimmings!
Some Members attending
the group have even
organised a mini holiday
together at Treendale
Gardens Respite Facility.
We look forward to
hearing about their stay.
New Members are
always welcome to come
and join the group and
you most certainly won’t
be disappointed!
For further details you can call the Rockingham Centre
on 9592 9202 or email the Senior Outreach Coordinator
Nicola.ryan@mswa.org.au
GREAT SOUTHERN REGIONAL
NEWS ROUNDUP
CAROLINE CLARKE-SMITH, MSWA OUTREACH COORDINATOR
We have had a busy year so far. With an information day, Ride
for MS and then the Albany Swim, it was a hectic few weeks.
Thanks to all those who participated, volunteered or just came
along to give moral support, it made the day a huge success.
It was really great to meet so many people who came to town
from all over the place to compete. Well done to all.
We have been to Great Southern Grammar and given a talk
about multiple sclerosis (MS) and thanked them for their
continued support with the Swim. We are considering inviting
some students along to Outreach, so they can see what some
of their fundraising has been spent on.
As we like to hear what is happening and what our MSWA staff
can help with, we have had Anne (OT) give a talk on assistive
technology which was really interesting. Until someone lets
you know what is out there and about the extensive range of
apps that are available, you can be missing out. Some great
apps are free – to help with memory, relaxation, organising
your medications, shopping – and the list goes on. If you need
help with anything you just need to ask MSWA staff.
Suzanne our physio also jumped at the chance to talk about
the benefits of exercise and explained that small amounts are
often helpful. Exercise classes have been running on a Friday
morning covering different areas. Strength and balance
is one that has been popular, Pilates, and the pool classes
on Tuesday and Thursday mornings. If you would like more
information please give us a call.
One large spend of our Swim money was allocated for the
Reformer exercise machine which was a little over $4,000.
Suzanne is keen to get a few more Members using it so come
in, have a look and talk to Suzanne to see if it is suitable
for you.
We do send out a Members newsletter in The Great Southern
so if you don’t already receive it and would like to, please give
us a call on 9841 6651 or email us at albany@mswa.org.au
and we can add you to the list..
We really value your feedback so for outing ideas,
guest speakers or activities let us know your thoughts.
FYI whilst we are an MS Support group, we talk about
lots of things, food comes up a lot!
32 | MSWA BULLETIN SPRING 2018

SOUTH WEST REGIONAL NEWS ROUNDUP
SUZIE BARKER, MSWA BUNBURY OUTREACH COORDINATOR
A big warm “hello” from all the Members and staff at the
Bunbury Hub Outreach Group as we welcome some brighter
weather heading into spring. We are now into our second year
of enjoying our wonderful Outreach area and all the services
this wonderful facility provides for our Members and Clients
here in the south west area.
Apart from our weekly social gatherings and playing various
board games including the popular focus word quizzes, Bogan
Bingo and a trip to the Las Vegas Casino Strip, we have also
enjoyed visits from several guest speakers. They have covered
various topics including a very informative presentation by a
volunteer Dave from the Citizens Advice Bureau, on a range of
situations that may affect any of us in everyday life.
The highlights of this year so far have been firstly, celebrating
World MS Day in late May with a very interesting and
informative presentation given by special guest and MSWA
funded researcher, Dr Lucinda Black on her recent research on
Diet and Living with MS. This was followed by a presentation
from Member Services General Manager Sue Shapland
detailing recent MS research updates and information about
the NDIS soon to commence in the remaining south west
as of October 1, 2018. The morning was very well attended
with many questions asked with informative conversation
and discussions being had around the room regarding these
topics and the coming future changes of the NDIS. Members
were advised that our MSWA NDIS team will contact them all
in August and schedule information sessions in Bunbury – so
stay tuned.
Secondly, after a presentation by guest speaker Mr Laurie
Blurton from the Bunbury Lawn Bowling Club to gauge interest
in the possibility of an outing to their club, we switched tacks to
holding an indoor bowling morning in our large Outreach area.
This proved to be a great success with Members, Clients and
staff participating together. We had a great laugh, so many
thanks to Nicola Ryan and Wilson for loaning their bowling
mat and gear to the Bunbury Group. Laurie has graciously
offered to acquire a donated bowling mat for our group to hold
future bowling challenges and trophy mornings and to provide
a set of bowls to use. Many thanks to Laurie and the Bunbury
Bowling Club for their time and organisation for the morning
and into the future.
We are now looking forward to once again hosting CEO
Marcus Stafford for our regular MSWA update presentation
in late August. We will have a special morning tea before the
presentation, which is always well attended.
Other activities in the pipeline are a holiday trip to Ireland to
find some leprechauns, four leafed clovers, kiss the Blarney
Stone and attempt some Irish dancing!! We are also excited
to have been invited to return to Chalbury Park B & B gardens
in Harvey by owners and friends Jeff and Karen Wittock
for a garden morning tea. Our first outing to this beautiful
establishment was absolutely fabulous, and to enjoy the
immaculate surroundings in spring was, and will be again,
sublime and uplifting for the soul.
As I close, I would like to thank all our Members, Clients
and staff for their great contributions to our group thus far
this year, and always, and for making us who we are today.
TREENDALE GARDENS
PAULA KENNEDY, MSWA TREENDALE RESPITE COORDINATOR
Wayne Harris, a much-loved resident at Treendale, sadly
passed away in June 2018. His parents have bought a lovely
handcrafted wood and glass plant stand for Treendale. It is
a lovely way for us to remember Wayne who was a lively
and entertaining resident and member of our Treendale
community; enjoying a joke, singing along with music and
chatting to all who passed by.
Our Treendale Gardens residential units will be full in August
when a new gentleman moves in. He has regularly visited
us and enjoyed staying in respite and is very much looking
forward to joining us here. The residents continue to enjoy
regular social support from the Individual Options team as well
as regular recreational events in the communal area. Some of
the residents, and our cooks, continue to enjoy working on
our fruit and vegetable
garden and reap the
rewards, with their
meals often including
something homegrown
from the garden.
We still have many wonderful visitors to our respite
house and family holiday unit, who come down to enjoy
the restful atmosphere of Treendale Gardens and the area
in general. We often have space so if you are interested
in a country getaway please give us a call regarding a
booking on 9725 9209, or email Treendale@mswa.org.au
MSWA BULLETIN SPRING 2018 | 33

TREENDALE RESPITE AND A HAVEN
AWAY FROM HOME
GREG BROTHERSON, MSWA MEMBER
My wife had major surgery on her shoulder, the tendons worn
thin after years of singlehandedly carrying the increasing load
of caring for me. Fortunately, there is MSWA’s Respite Home
at Treendale, situated adjacent to the Leschenault Inlet at
Bunbury that provided a safe haven for the next three months
while my wife recovered. This was crisis accommodation, not
actual respite, however if Treendale had not existed at that
particular time the nursing-home alternative doesn’t bear
even thinking about, except to say that the Treendale facility
is ‘priceless.’
Treendale is part of, but separate from, MSWA’s high-support
accommodation units. Together it is a nicely proportioned
complex set in well-manicured parklands next to a huge
artificial lake which is the terminus of a natural stream that
winds its way northeast from the Leschenault for a kilometre
or so through the encroaching suburbia. Period-style
footbridges allow access to both sides of the trickling stream,
adding a special character which harmonises the area.
Families of wild ducks are the final touch to this idyllic setting.
If the weather is fine the journey by power chair makes a nice
exploratory trip.
To the east of Treendale, the facility overlooks a wide expanse
of vacant land set aside for future development, and this
land abuts a large blossoming shopping centre anchored
by Woolworths at one end and Bunnings at the other – all
of which is within easy reach by power chair. Treendale is a
relaxing mixture of country life and the slow encroachment
of suburbia stemming from Bunbury, with the architects
obviously trying to balance the environment.
Treendale reflects this attention to detail by the architects to
fade the MSWA complex neatly into this carefully modelled
setting. Considerable attention has been given to the security
fencing however, which is unobtrusive but significant.
Security, lighting and privacy is of paramount concern for
the managers.
This attention to detail continues inside the respite home.
There are six spacious bedrooms, each with an overhead
hoist, television and DVD player, connected to an equally large
shared bathroom. The dining room and television area for
those residents who desire big-screen viewing, is individually
incorporated into a large open-plan room. It is a generous
country-style home subtly incorporated into the larger facility
which is in keeping with the great outdoors yet retains its own
character and homely feeling. A three-bedroom holiday unit
is attached.
The wonderful staff go out of their way to make both Members
and NDIS Clients comfortable. One cannot but feel other than
completely relaxed and at ease in this particularly unique
environment. The meals are country cooking at its best.
Laundry is a daily service.
For everyone involved in the decision-making process to
utilise Treendale is a win-win situation. Carers get a break
and Members/Clients get a holiday in a coastal/country
locality connected to the Perth metropolitan area by a modern
highway. If there is a need for some excitement, dining and
entertainment, the bustling city of Bunbury is a short distance
away using the multi-purpose taxi service.
Since the early days when the facility was opened 8 June 2012,
Treendale’s popularity has been slowly growing as realisation
dawns that this is a first-class facility. It is therefore prudent
to book ahead to avoid disappointment. For Perth residents
transport can be arranged to and from the respite home.
Treendale is a unique holiday experience, offering family
members the added reassurance that the 24 hour 7 day
service on offer is safe and their loved one will be cared for
by MSWA’s certified and fully trained staff. Not as obvious as
research, respite for carers, Members and NDIS Clients has
an important role to play in the continuing fight against the
unknown causes of neurological disability.
If you would like to find out more about Treendale, or
arrange a viewing, please contact Paula Kennedy on
9725 9209 or email treendale@mswa.org.au
34 | MSWA BULLETIN SPRING 2018

Take a break
in the South West
Treendale is only 20 minutes from Bunbury,
located next to a small parkland with wheelchair
friendly paths and a shopping centre nearby.
MSWA Treendale is our 6-bedroom, 3-bathroom purpose built, accessible respite
home. Our staff are onsite 24/7 and are experienced in supporting people living
with MS.
Located next to our respite home is our wonderful 3-bedroom family holiday unit
where family can get away from the routines, whilst accessing support for their
loved ones if needed. We may even be able to assist you with transportation.
Funding to cover your stay may be available through the Commonwealth Carer
Respite Program or through your DSC or NDIS individual packages. Speak with
our friendly team to chat about your individual needs.
For more information or to book your stay at
Treendale Gardens, phone us on 9725 9994
MSWA BULLETIN SPRING 2018 | 35

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