MSWA Bulletin Magazine Autumn 2019

BULLETIN
THE OFFICIAL MAGAZINE OF MSWA mswa.org.au
AUTUMN 2019
MSWA Member Kate Gild in her new home at Butler’s Supported Accommodation facility
NDIS UPDATE
2019 CAMPS
HEALTH EDUCATION AND PEER SUPPORT GROUPS
FUNDRAISING NEWS

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, MS Specialist Nurse: 9365 4888 or Community Nurse: 9365 4888
LETTER FROM THE EDITOR
DR GREG BROTHERSON
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 & CLIENT SERVICES
Nicola Washington: 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 6651
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
BUTLER SERVICES CENTRE &
SUPPORTED ACCOMMODATION FACILITY
245 Butler Boulevard, Butler
Manager, Claudia Taylor: 9365 4888
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, 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.
Occupational Therapy 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.
Speech Pathology Department: 9365 4888
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: 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: 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.
Dietitians Department: 9365 4888
On behalf of the Editorial Committee, welcome to your
first Bulletin for the year. We have pleasure bringing all
the latest news to you, but here it is all about us and you.
We need your help.
Every part of the organisation is subject to an audit and
refreshing, and the Bulletin magazine is no exception.
We think Bulletin is pretty good but of course we are biased!
INSIDE AUTUMN 2019
LETTER FROM THE EDITOR 3
FROM THE DESK OF THE CEO 4
A MESSAGE FROM THE GENERAL MANAGER –
STRATEGIC SUPPORTS AND RESIDENTIAL OPTIONS 5
A MESSAGE FROM THE GENERAL MANAGER –
MEMBER & CLIENT SERVICES 6
MSWA QUALITY EVALUATION 2018 7
MS RESEARCH ROUND UP 8-10
PROTECT AGAINST THE FLU THIS YEAR 10
MSWA PROVIDES GRANT OF $200,000 FOR RESEARCH
INTO MOTOR NEURONE DISEASE 11
NDIS UPDATE 12
HEALTH EDUCATION AND PEER SUPPORT GROUPS 13
FIND SOME TIME IN YOUR DAY TO PLAY 14
MAKING A VISION BOARD 15
SMART EATING WEEK 16-17
MS AUSTRALIA NATIONAL ADVOCATES MEETING
NOVEMBER 2018 17
Do you want to receive
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Register your email address today to start receiving our
monthly Vitality e-newsletter or the Bulletin magazine online.
Email damien.hill@mswa.org.au or call 9365 4814
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Whilst we receive positive feedback in our annual survey
we would also love to hear from our readers. How is the
content for you? Is there something else you would like to see
in the Bulletin?
Please let us know by emailing us at: bulletin@mswa.org.au
2019 CAMPS 18
WHERE DOES COURAGE COME FROM..? 19
THE NEW INTERNATIONAL DYSPHAGIA DIET
STANDARDISATION INITIATIVE 20
WASTE NOT, WANT NOT 21
THE JOHN STUDDY AWARD 22
BUTLER SUPPORTED ACCOMMODATION NOW OPEN 22
NEW HOME FOR KATE IN BUTLER 23
FUNDRAISING NEWS 24-25
MSWA EVENT PARTICIPANTS
FUNDING EQUIPMENT PURCHASES 25
SUMMER UPDATE 26
TREENDALE GARDENS ACCOMMODATION NEWS 27
FERN RIVER NEWS 27
SOUTHSIDE OUTREACH NEWS 27
2 | MSWA BULLETIN AUTUMN 2019 MSWA BULLETIN AUTUMN 2019 | 3

MARCUS STAFFORD
“It always seems impossible until it's done.”
Nelson Mandela.
From the desk of the CEO
“Nothing great was ever achieved without enthusiasm.”
Ralph Waldo Emerson.
A message from the General Manager –
Strategic Supports and Residential Options
SUE SHAPLAND RN, BN, Cert MS Nursing, MSCN
Welcome to the first edition of the 2019 Bulletin magazine.
In many respects this quote defines our journey with the
National Disability Insurance Scheme (NDIS), which continues
to roll out across the State. It’s a lot of work for our Customers
but it will be worth it once you have your plan in place.
I’m proud to announce the opening of our newly built $8
million Services Centre and Supported Accommodation
Facility in Butler.
Sue Shapland, General Manager – Strategic Supports &
Residential Options will give our Members a warm welcome
to Butler in this edition and you will get to hear from MSWA
Member, Kate Gild who was the first resident to move into her
new home there.
Recognising the large proportions of our State, we are always
considering how we can cater to all of our regional Members.
MSWA is proposing to build a new Services Centre and High
Support Accommodation facility in Albany which is currently
in the planning and proposal stage.
These Centres could not be built without the strong foundations
of our ongoing commercial activities and financial success.
We have a new General Manager – Member and Client
Services, Nicola Washington who has a great wealth of
experience and will manage our continued growth in Member
and Client Services.
With three quarters of the budget year behind us, I am pleased
to report that our $3 million investment into neurological
research is contributing to fantastic results and we will keep
you updated as the research progresses.
I am pleased to announce MSWA’s involvement with another
leading WA not-for-profit, the West Australian Symphony
Orchestra (WASO), for their 2019 season. MSWA will be
partnering with WASO for their ‘Under 30s’ program, which
will allow anyone under the age of 30 to pay just $25 for
tickets to a range of concerts across the 2019 program.
Our partnership will also provide benefits and special offers
for our MSWA Members throughout the season. This will
include access to special performances as well as a standard
‘MSWA’ discount, to name just a few of the benefits!
It has been long understood that music is powerful! We now
know that the benefits of music extend to the wellbeing of
motor and cognitive skills and overall brain health. It is very
fitting therefore, for us to partner with WASO in helping
them make music more accessible to the younger market,
particularly at a time when more and more young people’s
lives are touched by the effects of a neurological condition.
The results are in for the MSWA reginal events Albany Ride
and Albany Swim, which saw over 300 participants raise
more than $50,000. The Great Southern region has once
again demonstrated their support for people living with
neurological conditions. Congratulations and thank you for
your continued support.
Our largest fundraising initiative, the Mega Home Lottery,
once again sold out in a record number of weeks earlier this
month. I would like to thank all of our dedicated staff involved
who deliver outstanding results for our Customers, and our
generous supporters who purchase tickets.
As MSWA continues to support people living with all
neurological conditions, the need for more tailored and
larger premises is needed. Our time in the leased property
in Bentley has now come to an end and Belmont is our new
home from April.
Initially it will provide a base for the Administration, Marketing
and Finance personnel, and Member and Client services
equipment will be stored in the warehousing facility already
on the land. Over time, the premises will become dualpurpose
with extended Member and Client services being
made available in the first instance to the newly diagnosed
and low support Members and Clients.
World MS Day is fast approaching on Thursday, 30 May and
MSWA will once again have an opportunity for you to get
involved. Plus, our annual Step Up for MSWA (the stair-climb
of Perth’s tallest building) is Sunday, 30 June.
Until next time!
I recently found some great quotes by Ralph Emerson, very
worth a Google search!
I think this quote is very relevant for us at MSWA. We have
achieved, and will continue to achieve, great success driven
by enthusiastic, passionate and caring staff and volunteers
across the whole organisation.
You may notice my role title has changed? Due to ongoing
expansion across all parts of Member and Client Services,
particularly over the past three to five years, the General
Manager role became too big for one person. We have
strategically divided the role and welcomed Nicola Washington
as the General Manager Member and Client Services, in
November last year.
My new role now focuses on key aspects of Safety and
Quality, Strategic projects including the allocation of Research
funding, and our expanding Residential Options including
accommodation and respite.
Our teams have been busy as we have opened the 10-unit
accommodation facility at Butler; what an amazing place it is.
Thanks to Andrea Taylor who contributed to most aspects of
the facility, including the design and décor which has turned
it into a home. Sandra Wallace played a major role in fit out
as part of her Project Management role and the results are
gratifying. Everyone who visits, and of course the residents
and their families and friends, are blown away by the design
and set out. It’s pretty impressive but more importantly, the
residents love their new homes and the support provided by
our onsite staff.
Albany is our next location for another major build featuring
another Services Centre and High Support Accommodation
facility. We will keep you posted regarding the timelines once
we have a start date.
Of course, building these Centres wouldn’t be possible
without the ongoing success we experience, through hard
work and sound financial management, through our Lotteries,
events, and investments. We can buy the land and build these
Centres to our own design, which really is quite unique in our
sector.
Our team will be working hard to ensure we comply with
the National Disability Insurance Scheme (NDIS) Quality
and Safeguarding Framework which is expected to commence
in 2020.
Our residential respite homes at City Beach and Treendale,
are experiencing increased demand and more Members
are including respite funding in their NDIS package which
provides funding for 24-hour care. If you need any assistance
with developing your NDIS plan or would like to know more
about respite options, don’t hesitate to contact us through
Get-in-touch@mswa.org.au or the NDIS team by email
ndisenquiries@mswa.org.au
We also have a fantastic 3-bedroom Family Unit at Treendale
where you can book a stay. If you need assistance with care,
that also can be arranged onsite.
One of the best aspects of my role is the Research component.
MSWA proudly allocated $3 million to neurological research
this financial year. In November, MSWA was added to the
UWA Benefactor Wall in recognition of the funding provided
to WA researchers linked with UWA. Our allocation to
MSRA was $1.5 million, with a third of that dedicated to the
International Progressive MS Alliance, and additional MS
funding was allocated to important projects and key staffing
positions at the Perron Institute.
What is also really exciting is the funding we have allocated
to projects supporting research into other major neurological
conditions including MND and Stroke.
Many of our MSWA event participants have allocated the funds
they raised to support people living with other neurological
conditions, here in WA. This has amounted to over $310,000
since 2016! MSWA has purchased vital equipment on behalf
of the major hospitals, outpatient services and rehab centres
which benefits a greater number of patients over time. We
have also expanded the MND loan equipment pool and
replaced old equipment initially purchased using DSC funding
for the NCCC Program. Liaising with the hospital staff to buy
much-needed equipment for their patients is another really
rewarding part of my role!
2019 is shaping up as another busy but rewarding year and
the continued NDIS roll out will see more of our Members
benefit from accessing the funding they need to support them
to live a better life.
The difference MSWA makes is really quite amazing and it’s
what spurs our staff on to dig deeper and do more.
If you need any advice or information about MS or MSWA
services, don’t hesitate to telephone 9365 4888 or use
the Get-in-touch@mswa.org.au link.
4 | MSWA BULLETIN AUTUMN 2019 MSWA BULLETIN AUTUMN 2019 | 5

Welcome to the Autumn edition of our Member Bulletin.
A message from the General Manager –
Member & Client Services
NICOLA WASHINGTON
First, please let me introduce myself as the new General
Manager of Member & Client Services. I joined MSWA last
November just before Christmas, so I was lucky enough to get
to several wonderful events and meet some of our Members.
I have previously worked across several customer service
sectors and have a passion for improving the customer
experience, so I am looking forward to what we can achieve
for our Members as we move forward in 2019. I am very
excited to join such a wonderful organisation which plays an
important role in our community.
Sue Shapland is now General Manager of Strategic Supports
and Residential Options. The split in the roles is due to the
successful growth the organisation has gone through over the
past few years and will enable us to pursue new opportunities
as we continue to grow into the future.
Our team continues to be busy with the roll out of the National
Disability Insurance Scheme (NDIS). There are still some
significant delays with the processing of plans through the
NDIA, but we are continuing to work with them to find ways
to process plans as quickly as possible.
The next NDIS roll out areas will commence on 1 July,
2019. This roll out includes Great Southern (Albany), Central
North Metro (Western Suburbs) and the South East Metro
(Victoria Park and Surrounds). A full list of suburbs can
be found at https://www.ndis.gov.au/understanding/ndisrollout/western-australia;
or contact our MSWA NDIS team.
If you are new to the NDIS, transferring from a WANDIS
plan, or renewing your current plan, please do not hesitate
to contact our team who are here to help you through the
process and get the best out of your plans. Our team can be
contacted at ndisenquiries@mswa.org.au
Some very exciting news for the start of 2019. Our brand
new Butler Centre was completed in January 2019 and we
are very excited to be offering services out of this wonderful
building in our Northern Suburbs. The Service Centre is truly
amazing and fitted out to the highest standard. If you would
like to find out more or book a service, please call 9365 4888
or email enquiries@mswa.org.au
I am sure 2019 is going to be another busy and successful
year for MSWA. Our main objective is to provide you with
excellent services and ensure you have the information,
support and advice you require. Your feedback is
important to enable us to continuously improve our
services, so if you would like to provide any feedback
please contact us on 9365 4888.
MSWA QUALITY
EVALUATION 2018
SUE SHAPLAND, GENERAL MANAGER – STRATEGIC SUPPORTS AND RESIDENTIAL OPTIONS
As part of our contractual compliance with both the Department
of Communities Disability Services and the National Disability
Insurance Scheme (NDIS), MSWA was reviewed by external
Quality Assessors in November and December 2018.
The audit team reviewed the various DoC-DS programs
including our supported accommodation facilities, Outreach
Groups and in-home supports. They looked at a sample
size of various documents, talked to over 60 Members
and Clients, met with seven carers and chatted with staff
across the various locations. In this instance they visited all
four accommodation sites, five Outreach Groups, including
Bunbury, and met or chatted with both individuals and groups
to get feedback and comments.
We were assessed against the six National Disability
Standards. It was very pleasing to learn that we again comply
with all the standards and there were no ‘required actions’
which are areas of concern requiring prompt action to rectify
issues.
We received many positive comments via feedback provided
through the final report:
“The organisation’s services and environments were
described by the large majority of clients and families as being
so important, valuable and enjoyable that they had become a
major part of their lives, and using its services was something
they greatly looked forward to.”
We also received five opportunities for service improvements,
which are suggestions made by the audit team, based on
some feedback. We have taken on board these comments
and will make improvements with a focus on improving
communication with clients and families.
Under the NDIS, a new Quality and Safeguarding Framework
will be implemented in 2020; this will require more
comprehensive external reviews and some changes within
our current systems and processes. We are already working
on some of the changes that will be required.
We would like to thank all the Members, their carers’,
and our staff, who participated in the audit. As
always, your feedback is important to us and helps us
make improvements.
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 AUTUMN 2019 MSWA BULLETIN AUTUMN 2019 | 7

MS RESEARCH ROUND UP
SHARING RESEARCH UPDATES FROM AROUND THE WORLD
Read more at:
mswa.org.au/researchupdate
SUE SHAPLAND RN, BN, Cert MS Nursing, MSCN
Here we provide summaries of research sourced from
websites in Australia and around the world, we hope it’s of
interest to you.
From the Barts website in the UK
Prevalence of asthma in MS: A United States populationbased
study. Hill E, Abboud H, Briggs FBS. Mult Scler Relat
Disord. 2018 Dec 12;28:69-74
MS and asthma are complex multifactorial diseases; adversely
impacting daily function. As the prevalence of asthma in
people with MS isn’t clear, this study sought to characterise
the prevalence of asthma in people with MS.
METHODS: A U.S. population-study was conducted using
electronic health record information for 56.6 million Americans.
The researchers evaluated the prevalence of asthma in people
with MS (141,880) and non-MS (56,416,790); looking at age,
gender, and race.
Results: The prevalence of asthma was significantly greater
among people with MS; three times more common, with the
greatest amongst the young and the elderly.
Conclusion: Asthma is significantly more common in people
with MS than in the general population - particularly in the
young and elderly irrespective of gender and race. The results
add to the growing MS comorbidity literature and emphasise
the need for management as a part of comprehensive MS
patient care.
From MS News Today Daily Digest
Comorbid anxiety, depression, and cognition in MS and other
immune-mediated disorders. Christiane E. Whitehouse, John
D. Fisket al.
This study sought to determine if anxiety and depression
are associated with cognition in MS, and whether these
associations are similar in other immune-mediated
inflammatory diseases; including inflammatory bowel disease
(IBD) and rheumatoid arthritis (RA) and in anxious/depressed
individuals without these conditions.
The study included 255 people with MS, 247 with IBD, 154
with RA and 308 with anxiety and depressions. Several
cognition tests and scales were conducted.
Results: All groups exhibited higher rates of impairment in
processing speed, verbal learning, and delayed recall memory
compared to general population norms.
Higher levels of anxiety symptoms were associated with
slower processing speed, lower verbal learning, and lower
working memory performance. Higher levels of depression
symptoms were associated with slower processing speed.
These associations did not differ across cohorts.
Conclusion: Managing symptoms of anxiety and depression
in MS, as well as other immune-mediated conditions is
important to mitigate their effect on cognition.
Neurofilament Light Chain Levels in Blood as a Biomarker
of MS Activity and Treatment Response. Jens Kuhle,
Harald Kropshofer et al; Neurology March 05,2019;92(10)
This study assessed the value of blood neurofilament light
chain (NfL) as a biomarker of recent, ongoing, and future
disease activity, tissue damage, and its utility to monitor
treatment response in relapsing-remitting multiple sclerosis
(RRMS).
NfL was measured in blood samples from 589 RRMS patients
and 35 healthy controls and compared with clinical and MRI
related outcomes.
Results: At baseline, NfL levels were higher in MS patients
than in healthy controls and correlated with MRI lesion load.
NfL levels were associated with an increased number of new
or enlarging lesions, relapses, brain volume loss and risk of
confirmed disability worsening.
Conclusion: Blood NfL levels are associated with clinical and
MRI-related measures of disease activity and neuroaxonal
damage which have prognostic value. Our results support the
use of blood NfL as an easily accessible biomarker of disease
evolution and treatment response.
From the UK MS Trust
Bexarotene drug trial for myelin repair.
This drug, currently used to treat certain types of skin cancer,
and taken as tablets once daily, is being tested for its potential
to repair myelin.
The MS damage to myelin interrupts or blocks nerve messages.
In the earlier stages of MS, oligodendrocytes (a type of nerve
cell in the brain) can often repair areas of damage, i.e. by
remyelination. As MS is more established, these cells stop
functioning or are killed off and myelin damage isn’t repaired,
resulting in increasing disability.
Bexarotene binds to special locations (receptors), called
retinoid X receptors, on the oligodendrocytes. Lab studies
have found that drugs which act on these receptors can
encourage oligodendrocytes to remyelinate, offering the
potential to reverse damage caused by MS and improve
symptoms.
A Phase II trial is recruiting 50 people with relapsing remitting
MS, currently receiving therapy. Half will take bexarotene
and half will take a placebo. The main aim of the study is
to monitor the safety of bexarotene and to assess whether
bexarotene can promote remyelination by comparing MRI
scans, measuring EDSS and visual evoked potentials.
A randomised double-blind placebo-controlled feasibility
trial of flavonoid-rich cocoa for fatigue in people
with relapsing and remitting MS. Coe S, Cossington J,
Collett J, et al.
Results from researchers at Oxford Brookes University
suggest a daily mug of cocoa, made from dark chocolate,
could improve MS fatigue.
Cocoa made from dark chocolate contains high levels of a
group of chemicals called flavonoids which could potentially
reduce fatigue through several biological processes. Having
shown a single drink improved fatigue, researchers wanted to
find out what would happen when you have a mug of cocoa
every day for six weeks.
40 people with relapsing remitting MS diagnosed within the
last 10 years and with moderate to severe fatigue took part
in this study. Everyone drank a mug of cocoa first thing in the
morning for six weeks; half drank cocoa with high flavonoid
content; the other half drank cocoa with low flavonoid content.
Participants rated fatigue level three times a day and visited
the study centre for further testing at the beginning, middle
and end of the six-week period.
Results: After six weeks there was a small improvement in
fatigue levels in 11 of those drinking high flavonoid cocoa and
in eight of those taking the low flavonoid cocoa. Those taking
the high flavonoid cocoa were able to walk slightly further in a
six-minute walking test. There was also some improvement in
the pain and discomfort component of health-related quality
of life questionnaire.
Condition: The results suggest that high flavonoid cocoa could
lead to a modest improvement in fatigue levels, but a bigger
study would be needed to confirm the results.
Fatigue is a common symptom in MS and can have a major
impact on daily life. Many factors can contribute to fatigue so
finding ways to cope requires a very individual approach. If a
daily mug of cocoa continues to show potential in future larger
studies, it would be a simple, safe and low-cost addition to
the fatigue management toolkit.
From MS Research Australia
Treating MS In Pregnancy.
MS predominately affects young women when they are
starting or growing their families, making treatment decisions
even harder.
Two new publications seek to provide evidence and guidelines
regarding the use of disease modifying therapies during
pregnancy.
1. A large international study, led by Australian researcher Dr
Vilija Jokubaitis from Monash University, is using data from
MSBase, which stores information about treatments and
outcomes from thousands of people with MS world-wide.
The analysis included over 9000 women with MS, aged 15 to
45, of which 1,178 women recorded 1,521 pregnancies. 42%
of these pregnancies occurred whilst taking a MS disease
modifying therapy. On average, women were on treatment
for 30 days of their pregnancy. These pregnancies were
compared to those which occurred within a year of stopping
treatment (20%) and pregnancies where the woman had
received no treatment for over a year (39%).
Results: Comparing pregnancy outcomes in women on
treatment to those off treatment, there was no difference
in the rates of full-term pregnancies, pre-term or premature
deliveries or miscarriages. Women were more likely to have
had an induced abortion if they were on MS treatments
carrying the higher pregnancy classifications i.e. evidence of
some harm to the foetus in pregnant women or evidence of
harm from animal studies.
2. The Association of British Neurologists released consensus
guidelines for the treatment of MS in pregnancy.
These were based on data from pregnancy registers
for some MS medications currently available and other
published information.
The guidelines have very detailed recommendations for
clinicians about the use of each of the currently available
medications during pregnancy and identified these key points
for women with MS who wish to have children:
8 | MSWA BULLETIN AUTUMN 2019 MSWA BULLETIN AUTUMN 2019 | 9

Results: MS treatment should not be delayed until a woman
has completed her family and doctors should keep in mind
the possibility of pregnancy when prescribing treatment to all
women with MS of childbearing age.
Relapse rates naturally fall during pregnancy, and so many
women with MS choose to stop MS medications once they are
pregnant, however, first line injectable treatments (interferon
betas and glatiramer acetate) can be continued throughout
pregnancy. It is recommended that other types of treatments
are stopped where possible.
For women with very active MS, treatment throughout
pregnancy should be considered.
Corticosteroids, a standard treatment for relapse, can be
given during pregnancy and while breastfeeding to women
who experience relapses.
Conclusion: Women with MS are no more likely to have high
risk pregnancies than other women, and unless there are
other reasons, MS should not limit the birthing options or
management of delivery.
From MSIF
Progressive MS International Collaborative Networks.
Multi-year grants investing significant amounts of funds, are
now supporting networks of researchers working together to
accelerate understanding and treatments for progressive MS.
This information has been sourced from Health Direct,
a Government initiative, visit https://www.healthdirect.
gov.au/colds-and-flu-treatments.
While it can happen any time, it's more common to catch the
flu, or experience flu-like symptoms, in the colder months of
the year (April to October).
Six ways to fight the flu:
• Get an annual flu vaccination to be protected. It reduces
the chances of both catching and transmitting the flu. This
is especially important for those at risk of complications
arising from influenza and those in close contact with atrisk
people. See your GP or local pharmacy for advice.
• Wash your hands; good hygiene is one of the best ways to
prevent the spread of colds and flu.
• Cover your coughs and sneezes; this prevents the spread
of infected droplets to others and surfaces.
• Bin your tissues; throw disposable tissues in the bin
after use.
These networks are focusing on:
• Drug discovery programs that identify and validate
molecular and cellular targets, and screen and characterise
potential drug candidates which may be either repurposed
or first-in-human drugs
• The discovery, advancement and validation of new or
existing biological or imaging biomarkers
• Proof-of-concept trials and trial designs, including, but not
limited to trials in remyelination, neuroprotection, enhanced
plasticity.
The lead researchers for the networks are:
• Douglas Arnold, M.D., McGill University (Canada) in
collaboration with 16 investigators from The Netherlands,
U.K., U.S., and Switzerland
• Gianvito Martino, M.D., Division of Neuroscience, San
Raffaele Hospital Milan (Italy) in collaboration with 13
Investigators from Italy, France, Germany, Europe, Canada
and the U.S
• Francisco Quintana, Ph.D., Brigham and Women’s Hospital
(U.S) in collaboration with 8 Investigators from the U.S.,
Canada, Israel and Sanofi Genzyme.
MSWA has allocated $500,000 in 2017/18 and 2018/19 to
the Progressive MS Alliance
PROTECT AGAINST THE FLU THIS YEAR
SUE SHAPLAND RN, BN, Cert MS Nursing, MSCN
• Avoid sharing; don’t share cups, plates, cutlery or towels
with others if possible.
• Self-care at home; you can treat the symptoms of a mild
cold or flu yourself. Most people will get better within 7-10
days without any treatment. You can relieve symptoms by
getting plenty of rest, drinking plenty of water and nonalcoholic
drinks, keeping warm, eating a healthy diet and
avoiding exposure to cigarette smoke. Your pharmacist can
assist with over the counter treatments if necessary.
• If you live alone let someone know you aren’t feeling well so
they can keep an eye on you.
• See your doctor if you are unwell and experiencing high
temperatures, headache, breathing difficulties or a rash, or
if you are worried at all.
You can call Health Direct 24/7 for free advice or to speak
to a registered nurse, call health direct on 1800 022 222.
MSWA PROVIDES GRANT OF
$200,000 FOR RESEARCH
INTO MOTOR NEURONE DISEASE
A $200,000 grant from MSWA will support research into
proteins linked to the progression of motor neurone disease
(MND) as well as a ground-breaking national study into
the needs of carers and families of people experiencing
end-of-life care and bereavement.
The grant is MSWA’s first funding allocation to research into
MND (also known as amyotrophic lateral sclerosis, or ALS).
MSWA CEO Marcus Stafford AM said the decision to support
MND research reflected the expanded charter of MSWA as an
organisation that helps people living not only with MS, but all
neurological conditions.
“As Australia’s largest contributor of funding for MS research,
we began to diversify our research investment program last
year when we supported an investigation into stroke,” said
Mr Stafford.
“This year we continue to broaden our scope with this grant to
the Motor Neurone Disease Research Institute of Australia.”
Dr Sarah Rea of The University of Western Australia will lead
a study into the interactions between p62 and TDP-43, which
aggregate in the cell body in most patients with MND. It is
hoped the study will help identify a target for future research
into potential therapeutics for this neurological condition.
Professor Samar Aoun of La Trobe University in Victoria
will lead the other MSWA-supported research project,
a national survey to help better understand the needs of
family members who care for people with MND. The
results will provide a foundation for developing more
targeted supports and resources to help families manage
decision-making and grief.
Janet Nash, Executive Officer of the Motor Neurone Disease
Research Institute, said donations received each year
were never enough to support all of the excellent funding
applications that warranted funding.
“MSWA’s offer of two grants of $100,000 each will enable two
additional researchers to lead their teams toward discovery
and improved care in 2019,” said Ms Nash.
“Both MND and multiple sclerosis are neurodegenerative
conditions. Outcomes from research in one disease may
well translate to benefit for the other – and maybe more
neurodegenerative conditions as well.”
MSWA’s grant to MNDRIA is part of its record $3 million
investment in research funding for neurological conditions for
2018-19.
“Thanks to the generosity of our supporters, MSWA is in a
position to broaden our investment in research and support
scientific investigations into other neurological conditions,
such as MND and stroke,” said Mr Stafford.
“While MSWA strives on a daily basis to improve the lives
of people living with neurological conditions, we believe that
medical research provides hope to the people we support and
their families.”
10 | MSWA BULLETIN AUTUMN 2019 MSWA BULLETIN AUTUMN 2019 | 11

NDIS UPDATE
GEOFF HUTCHINSON, MSWA NDIS BUSINESS DEVELOPMENT MANAGER
HEALTH EDUCATION AND
PEER SUPPORT GROUPS
SABENA LUND, MSWA COORDINATOR OF HEALTH EDUCATION & PEER SUPPORT
The NDIA recently released the second report for year six
of the National Disability Insurance Scheme, and I thought
it would be timely to update you with some of the key data
on how it is all going. A word of warning, this article is full of
stats so if you want to skip to the big reveal; the NDIS still has
some work to do, but overall is trending up.
Wait, what? First of all, yes, the NDIS is in its sixth year! It
seems like only yesterday that the NDIS was introduced. While
the roll out has had some twists and turns, it’s important to
recognise that its still very young and soon the whole country
will be covered by one equitable funding scheme which is no
small feat.
The NDIS is how big? What jumps out from this report is
the number of participants who have already made their way
onto the NDIS. As of 31 December 2018, more than 244,000
Australians are receiving NDIS funding. West Australians made
up 9,607 of this number or approximately 68% of the State’s
estimated intake. Importantly, 3,227 of these participants are
receiving individualised support for the first time. The report
also highlights that the WANDIS to NDIS transfers remain a big
priority for the NDIA with 2,949 transfers finalised compared
to only 967 in the previous quarter. This reflects what MSWA
have experienced and explains some of the wait for new NDIS
customers receiving plans.
While I acknowledge that the planning process has taken
longer than expected, it’s good to see so many people now
have access to funding for the first time, and I am optimistic
about further improvements over the next 6 – 12 months. This
optimism is due to the number of plan activations we have
seen over the past three months and the announcement late
last year that Mission Australia and APM will be acting as
Local Area Coordinators and assisting with plan development
into the community.
So where does the funding go? In WA, multiple sclerosis
customers make up 2.7% of the $0.5 billion total of annual
committed funding, with core support – daily activities
accounting for 48.4% of funded services. People living with
Autism make up the largest group of NDIS participants with
34% of the WA market with Mental Health second.
One important stat from this quarterly report is that only 75%
of committed funds were utilised in 2018 which means that
people are still not making full use of their NDIS funding.
Unused funding is returned to the NDIA, so if you have any
questions about how to make the most of your NDIS plan
please reach out to us today.
Is it making a difference? Included in this report were
findings from a recent study of participants associated
with the NDIS at least two years. The survey asked, “has the
NDIS helped?” across various categories and showed that
80% of respondents in the 25 and over age group reported
that their daily living has been improved. The study also
showed that 68% of respondents felt that their social and
community participation improved under the NDIS which are
both positive outcomes.
So, what needs improvement? If there was one aspect
of the NDIS vision that still needed work, it was ‘supporting
people into employment opportunities’ and with the number of
participants in employment not budging from 21% throughout
the six years of the Scheme. The employment rates of people
living with multiple sclerosis is slightly better at 22% while
the rates for those under the age of 25 is higher still, so
maybe things are beginning to change. Pleasingly the NDIA is
acting on this matter by setting up a Participant Employment
Taskforce to look for answers to the problem.
Overall, my reading of this report is positive for both the
NDIA and participants. The feedback we are getting from
MSWA Members who have commenced their NDIS funding
is generally positive, and we hope that once the Scheme
finalises its rollout in July, service delivery will continue to
improve. I would still expect an environment of change for the
next couple of years, however, MSWA will continue to work
with our Customers to navigate this changing environment
and focus on improving our service delivery to you.
As always if you have any questions about the NDIS
or your plan in general, please don’t hesitate to
contact your NDIS team at ndisenquiries@mswa.org.au
or call 1300 097 989.
Health Education
What kind of Assistive Technology (AT) could help make life
easier for you? Come along to a workshop offered by MSWA
Occupational Therapy staff to find out more.
Workshops for people living with all neurological conditions
are offered at Rockingham, Wilson, Beechboro and Joondalup/
Butler. Topics include:
Assistive Technology (AT) refers to aids that help you to do
something, such as:
- cooking tools such as an electric can opener
- housekeeping tools like a long-handled duster or a wheeled
laundry cart
- bathroom aids such as a grab bar
- grooming tools including long handled shoe horn
- reading tools such as an app that reads from your phone
or lap-top
- writing aids including foam grips for pens
- typing alternatives such as voice recognition apps
- scheduling tools like the calendar function on a smartphone
Cognition: Join a cognition group to learn how to improve
your attention, memory and thinking, and to share your
experiences with others. People living with MS commonly
experience changes in cognition such as taking longer to take
in and process information, or having more trouble recalling
details of a task or a discussion.
Managing fatigue: Fatigue is the most commonly reported
symptom in MS, with most people living with MS experiencing
this at some time. Fatigue can impact all areas of life and can
be experienced as overwhelming weariness, tiredness or lack
of energy. Come along to a fatigue workshop to share ideas
and gain strategies about how to conserve your energy and
work smarter.
Contact Occupational Therapy on 9365 4888 or
OT.referrals@mswa to find out more about upcoming
workshops.
Peer Support
Peer support can help people living with a neurological
condition and their family and friends to connect with others
who understand from personal experience. By reducing
feelings of isolation and loneliness, peer support can empower
people to improve their health and wellbeing.
Peer support can be provided in a range of ways, including
peer support groups, one to one and online.
MSWA offers a range of peer support groups for:
- people living with MS with groups held in Currambine,
Butler, Beechboro and Rockingham
- regional people living with MS and their support people with
groups held in Northam and Geraldton
- carers of people living with MS with groups held in
Currambine, Manning and Rockingham
Peer support is available for people living with all neurological
conditions through a range of groups and workshops such as
expressive journaling, restorative sound, stress busters, and
mindfulness meditation.
We’re looking to continue to build the peer support we offer
– watch this space!
Contact Sabena on Sabena.Lund@mswa.org.au or
9365 4858 or for more information.
12 | MSWA BULLETIN AUTUMN 2019 MSWA BULLETIN AUTUMN 2019 | 13

FIND SOME TIME IN
YOUR DAY TO PLAY
LEONIE WELLINGTON, MSWA SENIOR COUNSELLOR
MAKING A VISION BOARD
KELLIE HANSEN, MSWA COUNSELLOR
“We don’t stop playing because we grow old; we grow old
because we stop playing.” - George Bernard Shaw.
Often when we think of play we think of children. Play is a
child’s natural form of communication. It does not need to
be taught or directed as it is natural and spontaneous. It’s so
important in fact the UN has listed play as one of the universal
rights of children. Children use play to grow and learn, they
can safely try out new ideas and concepts and through
play, problem solve and work through emotions, develop
relationships and have fun.
During my training in child centred play therapy, we were
required to practice the techniques and theories using
roleplay, not just as the therapist but also in the role of the
child. I was taken aback at how quickly I lost myself in the
toys and playing out stories and emotions and how amazing I
felt afterward. Lighter, freer and enriched. I could not help but
reflect why I had lost contact with that playful part of myself
and how it could be a crucial part in not just child, but also
adult therapy.
At what point on our road to adulthood do we discard
this natural tool of play? Adults may be concerned that to
participate in playful activities or behaviours they may be
judged as childish. Given all the benefits I have previously
mentioned, I find it difficult to see being childish in the form of
play as a negative but rather an attribute. If as adults we can
fuel our imaginations, be more creative and be free to explore
in an unstructured way, surely that benefits not just ourselves
but our community.
For many years now, tech companies have understood the
link between play and the benefits in the work place. Allowing
staff to engage in free play during work, providing yoga or
other activities in the workplace, organising social activities,
all assist in increased staff morale, reduced burnout, lower
staff turnover, encourages teamwork, increases creativity and
problem solving. Play can help us function better when under
stress and rejuvenate both mind and body. These companies
have learned that value is not necessarily the amount of time
you work but the quality of that work and that is directly linked
to a person’s wellbeing.
Play does not always have to be a physical activity it can also
be a state of mind. Engaging with strangers while waiting in
a queue, being able to see the fun and colour in the world,
stopping to admire nature, art and beauty, viewing the world
with curiosity and openness. Being able to tap into these
parts of ourselves can boost our energy as well as improve
our brain function and open new pathways. It can allow us
to try new things, be flexible and learn to trust and feel safe.
It helps us build skills to improve our connections to family,
friends and co-workers.
Ultimately, play can add joy to our lives and the lives of others.
Some ideas to bring play into your life; find a hobby, join a club,
organise a games night, throw a frisbee, shoot some hoops,
put on a puppet show, create with play dough, dance in the
dark. Invite colleagues, family and friends to play along with
you. Laugh until there is no sound. Live with empathy and
nurture the child within. Play.
“A person’s maturity consists in having found again the
seriousness one had as a child, at play.” - Friedrich Nietzsche.
Humans have always imagined, dreamed and visualised while
hoping for good things to come in their future. In prehistoric
times, researchers believe that some cave paintings represent
hopeful visions of impending successful hunts that would
produce an abundance of food for their tribe. So, with a long
history of mankind recording dreams and goals in the form of
pictures, how do we, in 2019, imagine and visualise our own
life dreams in a tangible and focused way?
A vision board is a tool used to help clarify goals, increase
self-awareness and communicate our wishes to other people
in our lives. Some suggestions to include in your vision
board are career, values, health, end of life, family, holidays,
community, home decorating, your best life, meditation and
learning goals.
To begin your vision board, it can be helpful to daydream or
meditate the things you want to be, do or have in all areas
of your life. The more specific you can be, the better. Play
some music, burn incense or light some candles. This can
help you feel comfortable and relaxed and really allow your
visualisations to start flowing. If you are doing any journaling
or lists, try to handwrite them to create more energy between
you and your dreams.
The material you will need for your vision board will vary
depending on how you would like yours to develop. Many
people like to develop their vision boards into their own style.
You can use coloured cardboard, corkboard, pinboard, an
art workbook or even a notebook; there is no limit to this.
Pictures and words for your vision board can be found in
glossy magazines. Op shops often have cheap bundles, or
perhaps you can collect them from family and friends. It can
be quite relaxing to schedule a few hours for yourself, make
a cup of tea and flick through magazines until you find what
you are looking for. If this is not appealing to you, get online
and search on the internet for those amazing dreams and
inspirations you want in your life. Some people like to draw or
paint their pictures first, use photographs or even create their
own graphics online using Canva. Find pictures and words
that conjure the feeling of wellbeing.
As you look at your pictures, you may start to imagine what
your finished board will look like. Some people like to glue or
tape as they go, others prefer to lay out all their pictures and
words and do the sticking down at the very end. There is no
right or wrong way, the choice is yours to explore what feels
right. It can be helpful to find a quiet space where you won’t
be interrupted. Ensure you have all your supplies ready and
continue playing your music, burning candles or incense. This
is your special time and space to do what feels right for you.
If you want a more contemporary vision board, there are free
and low-cost apps available online including Pinterest where
you can design, change things around and keep your vision
board on your computer or iPad.
Now that your board has been created, it is important
to keep it in an area that you see every day.
Perhaps in your bedroom as you wake up or by the front
door as you leave the house. Also spend 10 minutes at
least once a week to sit quietly and really look at your
pictures and words on your board to revisit the feelings
of wellbeing and relaxation that you had when you were
completing it.
14 | MSWA BULLETIN AUTUMN 2019 MSWA BULLETIN AUTUMN 2019 | 15

SMART EATING WEEK
KAREN HUMPHRIES & KATIE POUND, MSWA DIETITIANS
Recently MSWA ran a successful social media campaign to
promote Smart Eating Week and provide our Members with
some tips on healthy eating.
What is Smart Eating Week?
Smart Eating Week ran from 11 to 17 February and focused
on raising community awareness of health and nutrition via
education by Accredited Practicing Dietitians (APD). This
year’s focus promoted how an APD can help improve your
health, and advocating for a new National Nutrition Policy in
Australia, which hasn’t been updated in over 26 years!
Having a healthy, well-balanced diet plays an important role
in overall health and in reducing your risk of chronic diseases
such as diabetes and heart disease. The dietitians at MSWA
have prepared some tips for eating smarter this week:
1. Start your day with food
Begin your day with breakfast to improve concentration and
keep energy levels stable throughout the day.
2. Plan ahead
Plan out your meals for the week and shop in advance to
achieve a balanced diet and avoid impulse purchases and
last-minute unhealthy meals.
3. Choose healthy fats
Unsaturated fats from foods like nuts, seeds, avocado and
vegetable oil (like olive oil) are beneficial in small amounts as
part of a healthy diet.
4. Eat mindfully
Increase enjoyment and awareness of your meal/snack. Limit
distractions at meal times, chew food well and pay attention
to how full you feel. Stop eating once you feel satisfied, even
if your plate isn’t empty. You can keep the leftovers for the
next meal.
5. It’s all about balance
Choose whole foods first. Limit processed foods, choose
mostly plant foods and eat a variety of food from the five food
groups for optimal health:
• Vegetables
• Fruit
• Meat and alternatives
• Grain foods
• Dairy and alternatives
6. Opt for Omega 3s
Omega 3s are fatty acids that have been shown to help
reduce inflammation in the body. The best sources of Omega
3s are fish, fish oil, cod liver oil and other seafood, but you
can also find them in plant foods such as flaxseed, walnuts,
chia, pecans and canola/flaxseed/soybean oils.
7. Limit processed foods
A lower intake of highly processed foods and higher intake of
whole foods and plant foods has been associated with lower
levels of inflammation in the body.
8. Eat a rainbow of fruits and vegetables
Choose a range of different coloured fruits and vegetables
to fill up on healthy fibre, get a range of vitamins and
minerals, boost gut health, manage weight and reduce
chronic disease risk.
9. Be alcohol aware
Limiting the amount of alcohol that you drink can help with
weight management, reducing your risk of chronic diseases
and keeping levels of cholesterol and triglycerides in your
blood in check. Aim for no more than two standard drinks
per day and try to have at least two alcohol-free days during
the week.
10. Catch up for a cook-up
Cooking at home means that you are in control of what is
going into your food. Try some new recipes and swap tips with
friends to improve your skills and confidence in the kitchen.
If you’re interested in speaking with the MSWA Dietitians
call 9365 4888.
RECIPE: Tasty Stuffed Sweet Potatoes
Prep: 10 min Cook: 25 min Serves: 4
Ingredients:
• 2 large sweet potatoes
• 1 spray of olive oil
• ½ onion, chopped
• 2 cloves garlic, minced
• ½ cup quinoa (could be substituted for couscous or rice)
• ½ tsp reduced-salt vegetable stock
• 1 cup fresh OR frozen spinach
• ¼ cup almonds
• 1 tbs sultanas
• ¼ cup reduced-fat feta cheese/cheddar/parmesan
• 1 can (400g) chickpeas (rinsed and drained well)
• Pepper to taste
LYNDA WHITTON, MSWA MEMBER & NATIONAL ADVOCATE FOR MSA
Method:
1. Preheat oven to 200 degrees (180 fan forced) and line an
oven tray with baking paper.
2. Wash the sweet potatoes, slice in half lengthways and
prick all over with a fork. Microwave for 6 minutes on high,
flip over half way. Put sweet potato in the oven and bake
for 20 minutes, flipping it over half way through.
3. While the sweet potato is cooking, heat the oil in a frypan
over a medium heat. Add onion and cook for about 5
minutes, till soft. Add garlic and chickpeas and cook for
another 2 minutes. Add the spinach and cook till soft.
4. Cook the quinoa according to packet instructions, adding
the vegetable stock powder to the water.
5. Add the cooked quinoa, almonds, cheese and sultanas to
the onion mixture, stir and season with pepper.
6. Use a fork to scratch and mash the top of the sweet potato,
then top each one with half the filling.
(Recipe adapted from Live Lighter)
https://livelighter.com.au/Recipe/522/stuffed-sweetpotato-3-2-1
MS AUSTRALIA NATIONAL ADVOCATES
MEETING NOVEMBER 2018
As part of my duties as the WA Advocate for MSA I travelled
to Canberra for our annual meeting with MSA management,
politicians, and my fellow advocacy colleagues from
around Australia.
The aim of our meeting was to seek election commitments
from all sides of Parliament about our road map for people
living with MS and other neurological conditions. There are
three roadmaps created by MSA as part of their strategic
planning; they seek to defeat MS, to support people with MS
living with disability; and to support people ageing with MS.
We held a ‘Parliamentary Friends of MS’ meeting in Parliament
House with many MPs and Senators invited to attend.
Our huge coup was to have the Prime Minister Mr Scott
Morrison, not only be there but to officially open our meeting!
To have such support is a testament to all the hard work MSA
Advocates do behind the scenes. I am proud to say I am part
of such a dedicated bunch of people.
You can access a copy of that road map and the nine points
we hope to have all parliamentarians embrace, whoever wins
at the election, at msaustralia.org.au
The photo is with Prime Minister Scott Morrison and some of
the other MSA Advocates from states around Australia.
16 | MSWA BULLETIN AUTUMN 2019 MSWA BULLETIN AUTUMN 2019 | 17

2019 CAMPS
SUMIT SANDHU, MSWA COORDINATOR OF CAMPS AND RECREATION
WHERE DOES COURAGE
COME FROM..?
MIKE CLARK, CARER
Venues are booked and the dates are fixed! I am so excited
and looking forward to seeing our regular Members and
hoping to get a few newcomers at our retreats this year.
Here are the dates and venues for our carers’ retreats and
Member getaways:
1. Carers’ retreat at Rottnest Island Monday,
29 April to Thursday, 2 May 2019
This year our first carers’ retreat is at my favourite place.
Superior ocean view bungalows, dining out at the best
restaurants, fun indoor and outdoor activities – a few things
to look forward to. Feel free to contact me if you are a family
carer and want to enjoy this fantastic retreat. I encourage our
Members to convince their loved ones to attend these retreats
as a little treat on your behalf, I assure you they will be well
looked after.
2. Members’ getaway Guilderton Monday,
27 May to Thursday, 30 May 2019
The first Members’ getaway for the year is organised at Tuppin
house in Guilderton. Guilderton is a nature-based tourist
town, which lies approximately 100km north of Perth. With
the stunning views of Moore river from the accommodation,
it makes a perfect venue for our Members with only one hour
15 minutes’ drive from Perth. If you have not attended Moore
River camp before, give it a go this year. You will be amazed
to see how much fun we have on these getaways.
3. Carers’ retreat at Kilmolee at Safety Bay
Group 1 – Monday, 19 August to
Thursday, 22 August 2019
Group 2 – Monday, 26 August to
Thursday, 29 August 2019
This retreat is for our family carers who simply want to relax
in a very peaceful setup. Kilmolee offers spectacular ocean
views, splendid sunrises, glorious sunsets, beach walks and
amazing wildlife that will ensure your stay is a unique and
memorable one. In total, nine ensuite are rooms are booked
for each group and all meals are catered by a professional
cook. Activities are organised after consultation with the
participants so that we can structure the retreat according to
the interests and comfort of our family carers.
4. Members’ getaway at Woodman Point
Monday, 2 September to Thursday, 5 September 2019
This year we are back to Woodman Point for our second
Members’ getaway. I am hoping that you can join us this year
if you missed out on Rottnest camp last year due to limited
accessibility. If you are interested in art and craft, archery,
beach activities, quiz nights, and lots of fun activities and
competitions, this is the getaway you don’t want to miss. As
it is so close to Perth you are welcome to join us for the day
activities if you like the comfort of your bed to sleep at night.
5. Family camp at Woodman Point Monday,
7 October to Thursday, 10 October 2019
For Members with primary school aged children, this is the
camp where you can enjoy some quality time with your family.
The Department of Sports and Recreation organise activities
such as archery, flying fox, rock climbing, high ropes, beach
activities for children. Parents are welcome to attend and we
also run structured indoor activities.
All families get their own room with bunk beds and most of
the rooms have enough lower bunks for adults and younger
children. Feel free to contact me for further information.
6. Southwest Members’ Getaway Denmark
Monday, 28 October to Thursday, 31 October 2019
For our Members in the southwest we have a special getaway
for you. The Cove in Denmark offers open plan building with
a 25-seater table and a large open fire. Accessible bathrooms
and toilets and flexibility in sleeping arrangements in the
charm of the A-Frame. Meals catered by award winning
Mrs Jones café, outings, dining out, indoor activities are few
of the amazing things to look forward to if you are thinking
about attending.
We would like to acknowledge the support of Lotterywest;
their funding allows MSWA to provide these camps to
our Members and their carers at minimal cost.
For further information and to register your interest
please contact: Sumit Sandhu on 9365 4843 or email
sumit.sandhu@mswa.org.au
I’m writing this from a carer’s perspective. Although I don’t have
MS myself I’ve learned to live with it all the same. I manage
that better some days than others, but for the most part I do
okay. I have other interests, and even though I’m 63 years old I
stay active. Our story is not unique, but then again, MS affects
everyone in a unique way, so I guess I might be wrong about
that. Still, ever since my wife Kathy found herself on the wrong
end of its affection we’ve had a ‘third party’ living with us; an
unwanted guest that comes and goes whenever it pleases.
It all began with a general feeling Kathy had that something
wasn’t quite right. For several years’ doctors said the ‘trapped
nerve’ in her fingers, the two separate episodes of Bell’s
Palsy, and my personal favourite, ‘burning the candle at both
ends’, didn’t seem impossible. Except the ‘burning candle’
explanation ... we didn’t own any candles! Needless to say,
the initial indifference we encountered did little to help Kathy,
herself a nurse, deal with the early signs of MS. She did have
a couple of CT scans, but they proved inconclusive.
Time passed and Kathy learned to live with the increasing
number of symptoms she was experiencing, but as they had
no collective name at this point MS wasn’t a concern for us.
Not until the day I found her slumped over, head down, her
left arm lying awkwardly on her lap, a profound weakness
down her left side, slurred speech, and an inability to select
the appropriate word. Kathy was presenting for all the world
like she’d had a stroke. That’s when we took ourselves off to
the local hospital.
The neurologist in Emergency wasn’t convinced it was a stroke
but arranged for an MRI just to be certain. The result of that
scan came as a shock; 32 separate lesions in Kathy’s brain.
Shortly afterwards a consultant introduced us to our unwanted
guest by name ... multiple sclerosis. The diagnosis, although
upsetting, fearful even, brought us both some level of relief; now
at least we had a name for what was happening, we knew who
our unwanted guest was and could tackle our intruder head on.
Kathy’s been living with MS for over 20 years now, and it’s
been a difficult path to walk at times. I often ask myself if I
could maintain her happy disposition if I’d had a continuous (7
out of 10) headache for the past two decades. If I had to come
to terms with stopping the work I loved because of short-term
memory loss, fatigue, and increased cognitive dysfunction. I
wonder how I’d cope with looking okay on the outside while
crumbling away on the inside, and having to listen to people
tell me over and over again how well I looked. I doubt I’d
handle the constant numbness in my fingers and feet very
well either, or the double incontinence, the years of injections
and infusions, the shingles, or feeling like my energy was
draining away every afternoon, whether I was having a good
day or not.
Kathy’s okay with me writing about this, if she wasn’t I
wouldn’t do it. But her courage of late has been truly amazing.
At the beginning of October 2018, Kathy had a call back
following her annual mammogram and this led to a number of
biopsies. The following day she received the news no woman
wants to hear ... “we’ve found cancer”. Kathy had the all clear
just twelve months earlier so this came completely out of the
blue; three tumours in her left breast, each one aggressive
and invasive, the only option surgery. That news pushed our
worries of living with MS completely off the table.
The following week we met with the surgeon. The mastectomy
took place three days later. Unfortunately, cancer cells were
also found in one of the lymph nodes removed during the
surgery, and that meant most of the nodes had to go too. Kathy
has made a remarkable recovery from her surgery. She’s still
coming to terms with the changes to her body, but she’s
focused on her new challenge; six months of chemotherapy
with radiation treatment to follow. She’s going to lose her
beautiful long hair, but she’s discovered she can donate it to a
charity making wigs for burns victims and people with cancer;
a thin silver lining to an otherwise miserably dark cloud.
Kathy is strong in a quiet way, she’s accepting in an intelligent
way, and she is determined to get past this latest intrusion
into her otherwise happy life. By mid-August, we should be
able to say, “Kathy had cancer” and not, “Kathy has cancer”,
that’s the plan. Life often knocks you down, but it’s what
happens next that matters ... stay down or get back up? Kathy
has always chosen to stand.
I don’t have MS, but I care for a woman who does. Actually no,
I don’t just care for her, I love her, completely, unreservedly.
Her daily display of courage is something I can only aspire to.
MSWA have been incredibly supportive, not just with Kathy, but
with me too. I’ve taken the opportunity to talk with a counsellor
on a number of occasions and understand that MSWA is there
for me too. With ongoing support life looks good for Kathy and
me regardless of what may come in the future.
In truth, I’d have to say it’s not always easy being a carer,
but it is always an honour. I’m not sure where Kathy’s
courage comes from, but it’s been a rare privilege to
bear witness to it every day.
18 | MSWA BULLETIN AUTUMN 2019 MSWA BULLETIN AUTUMN 2019 | 19

THE NEW INTERNATIONAL DYSPHAGIA
DIET STANDARDISATION INITIATIVE
ISABELLA D’ANNUNZIO & NICOLA DAYMAN, MSWA STUDENT SPEECH PATHOLOGISTS
WASTE NOT,
WANT NOT
ROS HARMAN, MSWA MEMBER
Speech Pathologists are known for working with individuals
who have communication difficulties, but did you know we
also assess and manage swallowing difficulties?
A swallowing difficulty is any problem with drinking, chewing,
eating, taking medication, or protecting the lungs from food and
drink ‘going down the wrong way’. These difficulties can occur
at any stage of life and may be short or long term. Depending
on the underlying cause or the progression of disease, some
swallowing difficulties can persist and worsen over time.
With assessment and treatment from a speech pathologist, a
swallowing difficulty may be managed, reduced or resolved.
There are many types of therapies and strategies to manage
swallowing difficulties including modifying diet. These
modifications help to make chewing and swallowing both
easier and safer for our Members.
The current Australian National Standards for Texture-
Modified Foods and Thickened Fluids was released over ten
years ago in 2007. With the research frequently evolving
around the assessment and management of swallowing
difficulties, it was decided in December 2016 that here in
Australia, we would be changing our current practices to align
us with countries all over the world.
The International Dysphagia Diet Standardisation Initiative
(IDDSI) is a global standard for terminology and definitions
to describe texture-modified foods and thickened fluids for
individuals of all ages with swallowing difficulties.
“IDDSI is person-focused rather than profession-centred
approach with global terminology suitable for all cultures
and care settings,” said Dr Cichero, an Australian Speech
Pathologist and a co-chair for IDDSI.
The IDDSI framework was developed by a group of health
professionals who volunteered from all over the world
including specialists in speech pathology, nutrition, dietetics,
medicine, occupational therapy, nursing and engineering.
So far, the MSWA Speech Pathology team have begun
preparing for the adoption of IDDSI through attending
workshops, providing IDDSI training to MSWA staff and have
formed their own IDDSI committee. This committee will be
involved in managing the distribution of information as it is
made available. IDDSI is set to roll out Australia-wide in May
of 2019. This means you may begin to see some new posters
around Centres and hear care support workers using different
terminology in relation to texture-modified diets and fluids.
If you wish to find out more about IDDSI, please visit
https://iddsi.org/ or download the free IDDSI Framework
app on your smartphone. Alternatively, if you have any
queries, please don’t hesitate to contact the Speech
Pathologist team at MSWA for more information, through
reception on 9365 4888.
Speech Pathology Australia annually aims to educate and
advocate for those who have a swallowing difficulty, by the
promotion of ‘Swallowing Awareness Day’. This year, it was
held on Wednesday, 13 March. The MSWA Speech Pathology
team invited all Centre staff for an afternoon tea to inform
and provide continued education about the implications of a
swallowing difficulty for our Members.
Do you often experience:
• Coughing while eating or drinking?
• Trouble swallowing tablets?
• Worry about attending social gatherings where food
is offered?
• Difficulty in feeding yourself?
• Difficulty swallowing your own saliva?
If any of these apply to you, you may require a swallowing
assessment. Please contact Speech Pathology at MSWA
on 9365 4888.
I want to be good, but sometimes I’m not.
I want to eat healthily, and usually I do, but sometimes I buy a
chocolate bar and eat the whole thing by myself in one sitting.
I want to exercise regularly and stay strong, but sometimes
I spend all day in front of my computer, only moving to feed
myself or go to the bathroom.
I want to be a famous novelist like Tim Winton, but sometimes
I play games on my computer obsessively all day and don’t
write a word.
In the end, these things don’t affect anyone except me.
They don’t really matter. But what does matter is what
affects others.
I want to live ethically and not waste the world’s resources,
but sometimes I waste things and throw plastic away and it
breaks my heart.
I know I can do better.
Like many people, I have been shocked and upset by the
terrible images we see in the news of plastic pollution in
our oceans. I hate to see the pictures of birds, turtles and
other marine life dead or dying because of plastic debris
which may well have come from my own kitchen. I care
about our environment and I love all creatures. (Note: I don’t
actually love cockroaches, but I accept their right to be here.)
It is horrible to see the dreadful impact humans have had on
the earth.
When I was a young child, plastic was not as big a part of my
life as it is now. Most of the containers in our kitchen were
made of china, glass or metal. My mother eventually bought
a few pieces of Tupperware which she looked after carefully.
Four years ago when she moved into an aged care facility
and her house was sold, my sister found some of those pink
and pale green plastic containers still in her cupboard, and
still in usable condition.
I remember when cling wrap first appeared in our house. My
mother used it sparingly and carefully. For a while she even
washed each piece after use and laid it to dry so it could be
reused. That seems funny now, but this was the era when
groceries came home in brown paper bags, and sandwiches
were wrapped in wax paper. Food scraps were fed to the
chooks, or dug into the garden. Any leftover rubbish was
wrapped in newspaper to be put in the (metal) rubbish bin.
My parents were slow to change the habits they had learnt
from childhoods spent in poorer and more frugal times.
I, however, embraced the wonders of plastic with no thought
to what happened to it after I discarded it. When I threw
things out, I forgot about them. I bought plastic bags to line
my bins, and different ones to freeze food in and different
ones again as sandwich bags. When I emptied my cereal
packet I threw the plastic bag in the bin. I wrapped things in
cling wrap and then threw it away. It is only in the last couple
of years that I have come face to face with the truth about
plastic and taken a look at myself. Seeing terrible pictures of
oceans with floating plastic, turtles and sea birds strangled by
my throwaways brought me up short. It wasn’t enough to be
remotely horrified. I needed to take my short-term glasses off
and face the truth. I am doing this. I am polluting this ocean. I
am killing these animals.
If the major supermarkets and even the state government get
it by banning single use plastic bags, then I should too.
I’ve made changes. I don’t buy plastic anymore. Any that
comes into my house is stored to be reused, sometimes as a
rubbish bag, and that worries me. Increasingly I am wrapping
scraps in newspaper instead. When I shop, I put my fruit and
vegetables in cloth shopping bags. I would love to have chooks
or a compost heap, but I’m not sure how I would manage
either on my own. I wish one of my neighbours had them so
I could give my green waste to them. In the meantime I still
have a small amount of rubbish to put in my bin every week.
Our society is still in the process of working out how to live
without plastic. I want to live according to my beliefs and
ethics, but there are times when I struggle. Living with MS
and using a wheelchair, I find it difficult sometimes. Plastic
can be just so darn convenient and sometimes helps make
my life easier in little ways. I have to weigh up my desire
to decrease my toxic impact on the environment against my
physical ability, and it saddens me when I have to compromise.
Slowly, however, I will keep making what changes I can.
And maybe one day I’ll meet someone who will share my
desire to keep chooks.
20 | MSWA BULLETIN AUTUMN 2019 MSWA BULLETIN AUTUMN 2019 | 21

THE JOHN STUDDY
AWARD
MSWA COMMUNICATIONS
NEW HOME FOR
KATE IN BUTLER
MSWA COMMUNICATIONS
The John Studdy Award is Multiple Sclerosis Australia’s
most prestigious Award, given annually in recognition of
outstanding and selfless provision of meritorious service to
people living with MS, at either National or State/Territory
level, preferably over a period in excess of 10 years.
The standard of this service is to be of such high status that
‘the nominee has made, or is making, a tangible difference’
for the benefit of people living with MS and/or their families
or carers.
We are delighted to announce that Board Member,
Bulletin contributor, and MSWA Member Ros Harman
was one of the 2018 recipients.
Ros Harman was first diagnosed with MS at the age of 26.
Her early career included being a school teacher, and a
Human Resources and Training Manager for a medium-sized
Our latest accommodation facility at Butler has arrived!
What was a block of sandy land in the early days, is now
a wonderful MSWA Services Centre and Supported
Accommodation facility.
The 10-unit accommodation facility, with self-contained units,
their own courtyards and three communal areas including
a theatre room, lounge, dining rooms and courtyards is
amazing. The décor is beautiful, and it really feels like a home
for the new residents.
Our accommodation provides a home for residents living
with MS and other neurological conditions. We have 24/7
onsite care and provide supports and security whilst
promoting independence and choice. Thanks to our cooks the
food is amazing!
I am new to MSWA and it has given me great pleasure hiring
a team of over 25 professional care support workers. This
amazing new accommodation with a modern ‘Hamptons’ look
presents supported living in a stylish yet practical way, and
it’s truly refreshing.
company. Many years ago, Ros initiated and pioneered a
parents’ support group, and is widely felt to be an inspirational
role model for people with MS and for women in particular.
She has served on the MSWA Board since 2004, and is an
ambassador for MSWA, representing the organisation on
all forms of electronic media and is an active ambassador
within political circles. Ros is Vice President of the Board,
Chair of Member (Client) Services Committee and Chair of
the Research Committee. Her stewardship has led MSWA’s
position as the leading funder of MS research. Her past
roles within MSWA have also included Editor of the Bulletin
magazine and director roles that included fundraising.
Ros is a regular public speaker at events and functions,
promoting the involvement and participation of people
with disabilities.
BUTLER SUPPORTED ACCOMMODATION
NOW OPEN
CLAUDIA TAYLOR MANAGER, MSWA MANAGER – BUTLER ACCOMMODATION
Leading the Butler team and welcoming and supporting our
residents and their families from their first day arriving at
Butler Accommodation, has been a pleasure. The many smiles,
laughter and community spirit that has been built from the
ground up is amazing. I look forward to sharing further news
with you in the future and bringing you along on our journey.
I would like to thank everyone at MSWA; all the staff,
the various teams and departments and the wonderful
residents that have made this all possible.
In 2005, Kate Gild was diagnosed with multiple sclerosis (MS)
when she was 33 years of age. She was living in London at
the time and home in Perth on holiday visiting family, when
she started experiencing nerve pain in her wrist. Kate thought
it was carpal tunnel syndrome, but an MRI revealed it was MS.
“At the time I didn’t know much about MS, and after receiving
my diagnosis, I realised I had been living with some symptoms
for a while. I would fall over for no reason or find I could not
walk properly which I had put down to being clumsy. I also
had tingling in my right hand that I thought was carpal tunnel
syndrome, which my mum and grandma both had. I was very
scared,” Kate said.
Now in an electric wheelchair, life has been a roller coaster
for Kate and her family, but she considers herself fortunate
to have called MSWA Treendale Gardens home for the last
three years. The facility just outside of Bunbury in the State’s
beautiful South West, provides high-support, state of the
art accommodation and respite for people with neurological
conditions. There, Kate accessed 24-hour care and nursing,
and allied health including physiotherapy and Outreach at the
Community and Health Services Centre in Bunbury.
However, the 46-year-old wanted to be closer to her family
and was very excited when she discovered that MSWA was
building an $8 million high-support accommodation and
services facility in WA’s northern suburbs of Butler.
Butler Centre will be a one-stop-shop for people living with
MS and all neurological conditions, offering a range of
services such as physiotherapy, counselling, nursing, and
peer group sessions, and will be a base for staff co-ordinating
home support.
The adjoining development provides high-support
accommodation facility equipped with 10 fully self-contained
units for people living with neurological conditions. As soon
as Kate found out about the development, she put her name
down to apply for one of the units.
“I'm so excited to be living in the Butler community. I had
been living in Treendale for almost three years and my life
was fine but it's just so far away from my friends and family.
I’ve missed them so much,” said Kate.
The facility will provide permanent accommodation options
for people who can no longer stay in their own homes. They
offer an age appropriate option for younger people who would
otherwise find themselves entering aged care facilities, due
to their high care needs.
Kate is looking forward to the simple things like having friends
over for a coffee or going to her parents’ house which has
proved difficult whilst living regionally.
“The onsite care and support will allow me to lead a fulfilling
and independent life. The train station is down the road and
there is a services hub next door. I can take myself to my
physiotherapy sessions or go grocery shopping. I can’t begin
to tell you what that means to me,” added Kate.
“MSWA is thrilled to be opening a purpose-built centre for
people like Kate who are living with neurological conditions.
Residents will have their own self-contained unit and shared
communal area where they can socialise via a high-support
accommodation facility which includes onsite 24-hour, 7-day
a week care for younger people who may have otherwise had
to face the very real prospect of living in an aged care facility,”
MSWA CEO, Marcus Stafford AM said.
“These developments are made possible by the ongoing
support of MSWA by generous Western Australians who buy
tickets in our Mega Home Lotteries, take part in events like
MSWA Ocean Ride and make bequests and donations. We
thank all of our supporters very much.”
Mr Stafford added that the Butler Centre was part of the
organisation’s long-term, strategic growth plan which will
continue to develop a network of facilities in regional areas
such as Albany.
“We’ve found that the number of people using our highsupport
accommodation facilities has grown and I
predict that we’ll see the same thing happen in Butler.
To manage the ongoing demand over the coming years
we have a major building program planned, both in the
metropolitan area and regional Western Australia. As
well as bricks and mortar we also want to continually
increase the services we provide to our customers and
the number of hours’ worth of services that we provide.”
22 | MSWA BULLETIN AUTUMN 2019 MSWA BULLETIN AUTUMN 2019 | 23

FUNDRAISING NEWS
COMMUNITY EVENTS AND FUNDRAISING
MSWA Ocean Ride – Members Ride 2018
Did you know that 80 MSWA Members and Clients participated
in the MSWA Ocean Ride – Members Ride last year? The ride
is a cycling challenge completed on a stationary bike over an
eight-week period, concluding the week of the actual event.
Thank you to everyone who took part in the challenge and
congratulations on raising over $10,000 to support people in
WA living with MS and all neurological conditions.
The 2019 MSWA Ocean Ride is coming up on Sunday,
24 November. Register your interest on the website now
to be the first to know about this year’s Members Ride!
www.MSWAOceanRide.org.au
The Wilson Wonders who rode 309.44km.
MSWA Albany Ride 2019
This unique cycling event was another huge success thanks
to the generous support of the local Albany community. 180
riders took to the streets of Albany on Saturday, 23 February
to ride either 10km, 40km or 80km around the scenic City,
exploring some of its amazing sights. Over $18,000 has been
raised in 2019 so far, to help people in the Great Southern
region living with MS and all neurological conditions.
Register your interest on our website now, and you’ll be
one of the first to hear when the 2020 date is announced!
www.MSWAAlbanyRide.org.au
MSWA Albany Swim 2019
The 2019 event was the eighth annual MSWA Albany Swim
and was even bigger and better than 2018, attracting 130
participants and raising over $30,000. All funds raised goes
to supporting people living with MS and all neurological
conditions in the Great Southern Region.
Thank you to all of our dedicated supporters, well done.
Entertainment Book
MSWA would like to extend their sincere thanks and
appreciation to everyone who purchased a 2018-2019
Entertainment Book Membership in support of MSWA.
By purchasing a membership through MSWA, you have
helped raise over $3,000 for people in WA living with MS and
all neurological conditions.
Looking to update your Membership for 2019-
2020? Support MSWA with your purchase here:
http://bit.ly/2TGAvYA
MSWA EVENT PARTICIPANTS FUNDING
EQUIPMENT PURCHASES
SUE SHAPLAND, GENERAL MANAGER – STRATEGIC SUPPORTS AND RESIDENTIAL OPTIONS
Rottnest Channel Swim 2019
The Rottnest Channel Swim couldn’t have asked for a better
day on Saturday, 23 February 2019. MSWA had two teams
swimming on our behalf as part of ‘Team MSWA’, both of
whom had a personal connection to the organisation. The two
teams jointly raised over $4,500, which is a fantastic effort!
A special mention to Lauren, Ben, Johnathan and Michael
(pictured) who raised over $3,000 themselves in support
of Lauren’s mum, who is living with MS. The funds raised
through the event will help MSWA make a real difference to
people in WA living with MS and all neurological conditions.
If you’re interested in getting involved in another
Team MSWA event in 2019, visit our website for more
information! www.TeamMSWA.org.au
Since 2016 our MSWA event participants have had the option
to allocate the funds they raise to support people living with
other neurological conditions here in WA.
This has resulted in MSWA having over $310,000 to spend on
much needed equipment for patients with Stroke, Acquired
Brain Injury, Parkinson’s Disease, Motor Neurone Disease and
Huntington’s Disease, on the wards in the major hospitals,
attending Outpatient services, rehabilitation centres and
in their homes. Services supported with equipment have
included Osborne Park Hospital Parkinson’s Service, Sir
Charles Gairdner Hospital Neurology Ward and equipment
loan pool, Fiona Stanley Hospital Head Injury Rehabilitation
Ward and the Neurosciences Unit.
Donations have also funded much needed loan equipment for
people with MND as we replace old equipment, buy additional
stock and we provide equipment to the Sleep Clinic at SCGH.
These purchases are gifts that will keep giving as they benefit
a greater number of patients over time.
A huge thank you to those who donate this funding
and to our Events team for the fantastic events they run
each year.
24 | MSWA BULLETIN AUTUMN 2019 MSWA BULLETIN AUTUMN 2019 | 25

SUMMER UPDATE
NARELLE TAYLOR, MSWA MEMBER
There have been some very hot summer days this year and
they tell me that summer has now ended.
My youngest daughter and her immediate family, moved to
what we thought was idyllic, sub-tropical Queensland and I
anticipated that we’d be told by them, tales of their having
to combat heat. I would have been able to pass on all the
heat avoidance tricks and great methods for cooling down
that MSWA has told me about.
When Bree’s first story from their new home in sunny subtropical
Queensland, detailed a snake falling out of a tree onto
her head, I ignored my horror and pragmatically dealt with the
TV news reports from there, of fatal shark attacks instead. I
suggested that they only swim in tiled pools. Breathless with
worry, I admired photos of their new home and was then
relieved to see on the map that the ‘uncontrolled bush fires’
were likely to avoid them.
I suppose the very next news of flooding rains had me happily
deduce that it solved the problem of raging fires. Bree’s
keep-fit running group would have had very-improved times
if their running course, which goes along beside the river,
had revealed a crocodile or two, washed upstream a little by
the floodwater’s king tides. Then I remembered that snakes,
having escaped from the raging sub-tropical bush fires and
hiding under houses, were now submerged by floodwaters
and would swim back to dry ground where former Western
Australian families were enjoying their romantic new address.
Oh grief!
My ‘middle’ daughter and her family have moved back to their
newly completed renovations here in Perth and are nearby
so I’ve enjoyed a sleepover there on Christmas Eve and more
recently, was thrilled to see Milla (my oldest grandchild)
dressed for her high school formal. Her very much younger
brother Alby, threaded dinosaurs through the spokes of my
wheelchair and was seemingly very pleased with his efforts.
Older brother Max is able to keep Alby in order, so I guess I
have ‘might’ on my side. The back yard has concrete paths
where Alby and Max can fine-tune their bike-riding skills.
When Alby is biking like a boss, I suspect there’ll be less
dinosaur threading done. Yay!
Back in Queensland at the home of daughter three, my
granddaughters Claire and Lucy now own guinea fowl which,
as we all know, are just the best animals for dealing with
snakes. Their mum Bree also bought both girls a kitten each,
(to be sure, to be sure). The last item in this litany of tragedies
that we’re compiling here was added when she told me of a
hawk swooping down and taking one of the kittens up and
away to wherever hawks take things. No doubt, the kitten will
be replaced by another, hopefully more alert.
My oldest daughter has just recently nursed her man through
concussion and broken ribs that he acquired at work. Thank
goodness each of my three girls is able to run their own
households and all I have to do is worry. I’m not sure that
I’m all that good at worrying because I’ve never altered an
impending outcome. What will be, will be.
The most recent release of news from the banana benders
was under the headline ‘double homicide’. Investigative
procedures by little Lucy have revealed that the dead python
on the lawn was poisoned by the very dead cane toad beside
it. Lucy attests that the snake regurgitated the dead cane
toad because it realised it was poisonous, but it had already
bitten the python. It was a truly riveting news item.
I’m confident the new residents are going to be able
to survive.
TREENDALE GARDENS ACCOMMODATION NEWS
PAULA KENNEDY, MSWA TREENDALE COORDINATOR
Two of our long-term residents made the decision to move
from Treendale Gardens to the new Butler supported
accommodation facility, so they could be closer to family.
Kate moved in with us back in 2015 and Di in 2016;
both having spent some time in our respite house which they
had enjoyed.
Both ladies have been active Members of our Treendale
community, enjoying communal activities in Treendale
and accessing the community using social support funding
organised through the fantastic South West Individual
Options team.
FERN RIVER NEWS
DANUTA FUGURSKA, MSWA MANAGER – FERN RIVER
Residents at Fern River, especially those living in the units we
have completed so far, are enjoying the refurbishments which
are well under way.
Upgrades have been made to modernise parts of the
accommodation units as they are now over 20 years old.
Work on several of the units has already been completed
which includes a new bathroom and laundry, new flooring
throughout and replacement of furniture and white goods.
Residents are thrilled to have access to a functional, tasteful
kitchen, and a modern bathroom modified to suit their needs
and assist with promoting their level of independence.
SOUTHSIDE OUTREACH NEWS
JOHN WALLACE, MSWA MEMBER
Our cook, Rosemary, has a new volunteer to help whip up
our delicious lunches. Welcome Carney and thanks for your
time. Did we mention that Carney is Rosemary’s husband?
What a team!!
We said goodbye to a popular Member recently. Michelle has
moved to new accommodation in Perth and will now join in
Wilson’s activities. Michelle will be remembered for her bright
rainbow colours and unicorn headbands. We’ll miss your smiles!
A few Members have recently been to Treendale for respite,
a very popular destination for our Members. Speaking of
respite, the very popular carers’ camp to Rottnest will be
happening shortly. Attendees always rave about this four-day
break away.
In February we had two most unusual visitors. The latest
in mini robots. These clever little dancing characters are
designed by Colleen and her husband to be used in care
On 10 January Kate and Di organised a thank you lunch for
the residents and staff of Treendale Gardens and the MSWA
Allied Health in the South West. They ordered in food from
the famous local Farmers Market. The food was delicious,
the company sparkling, and everyone there enjoyed the food
and the chatter.
We were sad to see them leave us but wished
them well, knowing they will enjoy being closer to family
and friends.
Staff are excited to continue with the upgrades for all our
residents, their families and staff to enjoy in the future.
We have recently said farewell to two of our residents
who moved to the new Butler facility to be closer to family
and friends. However, we welcomed a new resident in
February with another moving in shortly.
centres and seniors’ centres to help keep residents moving
and singing along. We all had a good laugh while we joined
in their performance of ‘YMCA’, very clever; could it be that
robots will soon be part of everyday life?
Southside had eight tickets in the MSWA Mega Home Lottery.
We were looking forward to receiving the keys to the new
house but it was not meant to be.
Our physios continue to keep us on our toes – figuratively
speaking – with new equipment coming in regularly. Thanks
Sharon, James, Kirstin and University student, Calvin, who is
currently on work experience.
An annual event popular with Members is our beach
picnic held at Rockingham foreshore. A fun morning with
games, massage and takeaway fish and chips for lunch!
Let’s hope for good weather.
26 | MSWA BULLETIN AUTUMN 2019 MSWA BULLETIN AUTUMN 2019 | 27

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