MSWA Bulletin Magazine Autumn 2020

THE OFFICIAL MAGAZINE OF MSWA
Autumn 2020
mswa.org.au
INSIDE
/ A fresh look
for NDIS support
/ We’re all in this
together – a message
from our CEO
In February, we
jumped into MSWA
Fluoro for Neuro.
/ Myth busting the
stigma of attending
counselling
/ Food matters

NURSING
WILSON CENTRE
29 Parkhill Way 9365 4888
Fax 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
MANAGER OF ALLIED HEALTH SERVICES
Carol Chong 9365 4873
NDIS TEAM 9365 4824
OUTREACH GROUPS
Wilson Outreach 9365 4830
Beechboro Lodge 9377 7800
Southside Outreach 9592 9202
Albany Outreach 6154 5149
Bunbury 6454 2800
GENERAL MANAGER - STRATEGIC
SUPPORT AND RESIDENTIAL OPTIONS
Sue Shapland 6454 3174
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
Manager, Linda Kidd 9725 9209
BUTLER SUPPORTED
ACCOMMODATION FACILITY
Manager 6154 5120
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
General feedback or complaints please
contact Liz Stewart 6454 3173 or
feedback@mswa.org.au
EDITORIAL COMMITTEE
Greg Brotherson (Editor), Ros Harman
(Guest Editor), Marcus Stafford (CEO),
Paul Cavanagh, Sue Shapland,
Nicola Washington, Libby Cassidy,
Jamey Claffey, Carol Chong,
Aileen Ward and Geoff Hutchinson.
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.
Our MS nurses are usually the first point of contact after the neurologist’s diagnosis of MS.
JILL CROMBIE, MANAGER: 9365 4888 OR COMMUNITY NURSE: 9365 4888
PHYSIOTHERAPY
Our team aims to provide treatment interventions to develop and maintain mobility
and function.
DAVE HATHORN, MANAGER: 9365 4837 OR PHYSIO DEPARTMENT: 9365 4834
OCCUPATIONAL THERAPY
Occupational Therapists enable Members to continue their work and other interests
for as long as possible through advice, aids and equipment.
ILISSA LIEW, MANAGER: 9365 4804 OR OT DEPARTMENT: 9365 4888
SPEECH PATHOLOGY
Our Speech Pathologists provide support by assessing, diagnosing and creating
individualised treatment programs for Members who experience swallowing and/or
communication difficulties.
PAMELA WINDRAM, MANAGER: 6454 3140
DIETITIANS
Dietitians are university-qualified nutrition experts who promote general health and
disease prevention/management through dietary changes.
PAMELA WINDRAM, MANAGER: 6454 3140
COUNSELLING, PEER SUPPORT & HEALTH EDUCATION
Talking with a Counsellor creates a safe, respectful and confidential environment for
you and those close to you to explore options, create change or gain understanding
about your life. We have a Peer Support & Health Education Coordinator who organises
peer connection & events and supports health and wellness education services.
TO MAKE AN APPOINTMENT PLEASE CALL: LISA PAPAS, MANAGER: 9365 4836
OR COUNSELLING DEPARTMENT: 9365 4811
SOCIAL WELFARE
Social Welfare Officers assist Members and their families to access services
and supports to remain living independently at home. They specialise in case
management, advocacy and sourcing funding options.
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 Department of
Communities - Disability Services, and our own fundraising efforts.
AILEEN WARD, MANAGER: 9365 4851
CUSTOMER ENGAGEMENT DEPARTMENT
Our experienced teams will provide you with personalised support right throughout
your NDIS journey. From helping you to access the NDIS to working with you to get the
most from your plan, our trained staff are here to help.
GEOFF HUTCHINSON, MANAGER CUSTOMER ENGAGEMENT: 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
CONTENTS
LETTER FROM THE EDITOR. ............... 3
FROM THE DESK OF THE CEO .............. 4
GENERAL MANAGER STRATEGIC SUPPORTS
AND RESIDENTIAL OPTIONS . .............. 5
GENERAL MANAGER
MEMBER & CLIENT SERVICES. ............. 6
MSWA RESEARCH CONTRIBUTIONS. .......... 7
RESEARCH ROUND UP ................. 8-10
PROTECTING YOURSELF IN THE FLU SEASON. ..11
NURSING SERVICE IN THE ERA OF THE NDIS . . 12
FRESH LOOK FOR NDIS SUPPORT. .......... 13
ENHANCING POSITIVE RELATIONSHIPS . ..... 14
MYTH BUSTING THE STIGMA OF
ATTENDING COUNSELLING. ............... 15
FOOD MATTERS. ....................... 16
KINDNESS OF HEART MAKES FOR
AN IDEAL CARE SUPPORT WORKER. ......... 17
FAME AND TIM. ........................ 18
ACCESSIBILITY: STATE THEATRE OF WA. ..... 19
FUNDRAISING NEWS ................. 20-21
RECREATION SNAPSHOT . ................ 22
TAKE UP THE CHALLENGE OF GOLF. ........ 23
NEWS FROM OUR OUTREACH CENTRES. .. 24-25
HAMILTON HILL ACCOMMODATION NEWS. .... 26
TREENDALE GARDENS NEWS . .............. 26
BUTLER ACCOMMODATION NEWS. .......... 27
VOLUNTEER UPDATE . ....................28
FROM THE EVENTS TEAM ................. 29
EMPOWERED TO LIVE WELL ...............30
HAVE YOUR SAY – BE PART OF
OUR FEEDBACK COMMUNITY ............... 31
2

WELCOME
Welcome to the autumn edition of Bulletin, the first edition of 2020. It is my pleasure to be
stepping in as editor of this edition while Greg Brotherson takes a break.
Autumn is a time of welcome
reprieve after the long hot summer,
and we all enjoy the cooler
mornings, the balmy days, and the
pleasant evenings. This autumn
has been overshadowed with the
coronavirus pandemic, and many
people may be anxious about it
or frustrated by the new rules, the
shopping shortages and so on. Rest
assured, MSWA is complying with
all the recommended measures to
keep our Members, Clients and staff
safe. Apart from that, for MSWA it is
business as usual as we continue to
provide support and care for people
with MS and other neurological
conditions. This edition of Bulletin
will keep you up to date with our
services and activities, and provide
a wealth of useful information to
help you in your day to day life. In
this edition we acknowledge and
celebrate the service of several
staff members. Also, our newest
residential facility at Butler has
just celebrated its first anniversary
and has become a welcome home
for ten people who know they will
receive the care they need while
living in attractive surroundings.
People with disabilities often feel
they are left out of outdoor or
sporting activities, but in our feature
article about Paragolf, Sailability,
Bowlability, and other organisations
which provide opportunities for
everyone to access various sporting
and leisure activities, you may be
inspired to have a go yourself in
future. We also have an update on
the latest from our dietitians, as well
as an interesting article about the
unnecessary stigma some people
may feel when seeking counselling.
Our usual Research Roundup gives
us the latest information from
around the world on the scientific
progress into understanding MS
and other neurological conditions.
The NDIS continues to roll out,
providing Customers with direct
funding for their various needs.
MSWA has a Customer Engagement
Department which helps people
negotiate the NDIS, and Geoff
Hutchinson shares information in
this Bulletin about their services.
On behalf of the Editorial
Committee, I would like to wish you
happy reading.
ROS HARMAN
GUEST EDITOR
3

WE’RE ALL IN
THIS TOGETHER
MARCUS STAFFORD
CEO
As this autumn edition of Bulletin
goes to print, I am conscious of
the daily changes to our world and
working to keep you up to date with
significant developments as they
unfold. Please be reassured that in
these difficult times, at every level, I
am focussed on protecting you.
The novel coronavirus, or COVID-19,
is on every TV channel and on every
news site, so I won’t duplicate that
information. And I certainly won’t
add to the sensationalist reporting
from some quarters. What I would
say is, filter out the nonsense and
the scaremongering of the illinformed,
including the panicking,
and the reckless opinionated idiots
on social media.
Listen to the Department of Health,
WA State Government, the Federal
Government and get information
from the MSWA website. We are
updating it regularly from informed
and thoughtful sources, including
links to MS Australia.
For people living with MS, analysed
data has emerged from Europe
that has informed Australian
clinical neurologists and academic
researchers. Their calm, expert
views are posted on our website.
For people living with broader
neurological conditions: we will stay
close to expert views from qualified
sources. Informed updates will
continue to be made available.
My message to you. If you have
any concerns about your health
or your treatment regime, speak
to your neurologist and/or GP. For
those taking immunosuppressant
medications, continue to monitor
your health and if you feel unwell,
contact your GP or you can ring
Health Direct on 1800 022 222. There
is no ‘one size fits all’ approach and
your health specialist will offer the
best tailored advice for your specific
situation. Our best preventative
advice is to follow the hygiene
measures of the Department of
Health; especially washing your
hands frequently and practising
two metre social distancing.
These measures will change, as
things change. I’ve also been a
‘warrior’ in the past, soldiering on
through sickness. Not this time. If
you’re sick, please don’t take the
irresponsible chance for others.
Don’t go to work until you are better
and stay indoors.
The question I get asked a lot is, ‘do I
think this is another flu’? My reading
of the answer is ‘yes and no’. It’s a
novel flu, so it’s uncharted territory
for us all. The ‘yes’ is that the health
of the overwhelming majority of us
will either be unaffected, or we will
recover completely. The ‘no’ bit is
all about the broader community
– the broader Australian team.
We must all follow the advice
and do everything that we can to
protect and support our older folk.
Someone’s grandma. Or maybe
my 89 year-old dad. And of course,
people with pre-existing conditions
and significant health issues.
If we all act calmly and do the right
thing, we’ll flatten that curve; and
the journey, although unpleasant,
will be more manageable and the
recovery will be strong.
At MSWA, we are following the
advice of the Federal and WA State
Governments and in some cases
going above those standards. For the
period of this crisis, we have stopped
group activities and we’ve stopped
other services, like massage, that
we feel present unacceptable risk.
We’ve put in place hard protocols
for our residential facilities. I know
that these decisions aren’t popular.
I really understand that. And I look
forward so much to business as
usual. But in these extraordinary
times, our focus is resolutely on
protecting you.
Our forecasts, in this world of
uncertainty, are that things will be
tough and things will be tight for
MSWA. Let’s face it. It’s a tough time
for the world and it’s a tough time
for the country. Our organisation is
neither immune nor alone here.
But we will get through this. When
the time comes, if we work together
now as a team of decent people,
MSWA’s recovery will be fast and
our recovery will be strong. I have
no doubt about that at all.
I look forward to shaking your hand
again and hey ... if you want, I’ll even
give you a hug.
In a year’s time, we won’t look back
at this with any positive feelings.
But we will look back at this. And if
we stand together as a responsible
and caring community, we will be
able to embrace the future with our
heads held high.
My very best regards in these
challenging and difficult times.
4

STRATEGIC SUPPORTS
AND RESIDENTIAL
OPTIONS
SUE SHAPLAND RN, BN, MSCN
GENERAL MANAGER
STRATEGIC SUPPORTS AND
RESIDENTIAL OPTIONS
“If everything seems under
control, you’re not going
fast enough”
Mario Andretti.
We couldn't all help but be affected
in some way by the tragic scenes
of Australia burning, with the
loss of life, property and so many
animals. What was heartening
was the overwhelming bravery
of the emergency services and
the support shown by so many
Australians to those less fortunate
and the wildlife rescuers. Everyday
people doing extraordinary things
for the good of the community and
our precious wildlife.
As if that wasn’t enough, we are now
confronted with the challenges of
the spread of the novel coronavirus
and the impact, disruption and
related concerns that it continues
to bring for almost everyone. The
effect on communities worldwide
will be ongoing and Australia is
seeing significant restrictions to
our movements and shortages of
essential items due to the bizarre
phenomenon of hoarding! It’s at
times like these I am grateful for the
Australian health system, our quality
of life and less dense population.
As we embrace preventative
measures through good hand and
cough hygiene, social distancing and
other infection control measures and
self-isolation it’s important to stay
positive and support each other. We
will get through this together and all
look forward to getting back to the
cafes, sharing lunch and watching
the footy!
2020 is well and truly off and
running for MSWA and as usual,
we have lots planned! Our Albany
construction project was to start
in May but is now deferred. This
will be really exciting, especially
for our Great Southern Customers.
The Services Hub and high support
accommodation facility will be
built to our high standard and,
with significant input from Andrea
Taylor, the décor and fitout will be a
cut above the rest!
Our Butler facility is now a year
old! The first residents moved in in
January 2019 and they are justifiably
proud of their modern, homely
units. The theatre room with its
luxury furnishings and large screen
TV continually wows visitors onsite.
We are very proud
of our high support
accommodation and
residential respite facilities
and the great MSWA staff
supporting our residents
and Customers.
From Fern River, which opened in
the 80’s, to Butler which opened
last year, we strive to deliver quality
services and maintain the facilities
to a high standard.
A huge focus for our teams this year
is preparing for the NDIS Quality
and Safeguarding Commission
which takes over responsibility for
the registration and accreditation of
NDIS service providers. Compliance
is a necessity and we are currently
reviewing policy and processes
ensuring we align with the National
Standards.
MSWA continues to provide much
needed funds to support research
efforts in WA, Australia and
overseas; $3.5million in total has
been allocated in this financial year,
and I will provide some updates on
the WA projects in the next Bulletin.
We have cancelled our annual
Members Forum due to the COVID
19 restrictions but when we can
reschedule we will let you know!
Research updates are included
in every Bulletin and Vitality our
monthly e-newsletter.
I hope you managed to stay cool
in the heat and are surviving the
fluctuating conditions, from tropical
storms to heatwaves mixed with
the odd cold and rainy day! Heat is
not a friend of MS, or many other
neurological conditions, so keeping
cool and hydrated is important.
Whist the current focus is on the
coronavirus, our annual flu season
will be upon us before we know
it so don’t forget to have your
recommended annual flu shot.
Take care and I hope you enjoy this
edition of the Bulletin.
5

MEMBER &
CLIENT SERVICES
NICOLA WASHINGTON
GENERAL MANAGER
MEMBER & CLIENT SERVICES
Welcome to the autumn
edition of Bulletin.
As always, it has been a busy first
quarter for MSWA as we pick up
from the break over December
and January.
In NDIS news, Mr David Tune was
recently appointed by the NDIS
Minister, Stuart Robert, to conduct
a review of the NDIS. He delivered
29 recommendations but overall,
suggests the following:
1. Introducing a Participant Service
Guarantee that sets out standards
the NDIA must meet including:
/ clear expectations for how long
processes will take to complete
/ more transparency in how the
NDIA makes their decisions
/ better service delivery from NDIA
staff and their Partners in the
Community.
2. Improving people’s experience
with the NDIS by:
/ providing more flexibility in using
NDIS funding
/ allowing plans to be amended
/ participants being provided
drafts of their plan before it is
approved
/ better supporting children and
families
/ clarifying access for people with
psychosocial disability
/ providing better connections
to supports where markets are
undersupplied
/ enhancing online systems so
people can track where their
requests are up to.
3. The NDIA and governments
working together to:
/ clarify how the NDIS works with
other service systems
/ help people navigate, engage
with and understand the NDIS
/ create resources that help
participants decide which
supports they should use
The findings and recommendations
have highlighted the key areas
that need to change to deliver the
improvements required to NDIS. We
hope to see some changes through
2020 to support these findings.
If you have any questions
regarding your NDIS plan please
do not hesitate to contact
customerservice@mswa.org.au our
team of dedicated staff are always
here to help you navigate any
problem or question you may have.
As we move forward in 2020, we
continue to focus on our delivery
of our Customer-centric model to
ensure we continue to improve
on everything we do to deliver
you the best services. Some of the
changes we have implemented
have included setting up our new
Customer Engagement Team led by
Geoff Hutchinson. Geoff provides a
full rundown on his team on page 13.
Last month you would have
received an invitation to our Annual
Customer Satisfaction Survey to
understand how we performed in
2019. The feedback gathered for this
Survey will enable us to continue to
improve on our service delivery. The
results are currently being analysed
and the findings will be reported in
the next few weeks; we look forward
to seeing your feedback.
Thank you to everyone who took
the time to complete the survey.
If you would like to know
more about what is happening,
or provide any feedback, please
do not hesitate to contact us at
customerservice@mswa.org.au.
6

RESEARCH
MSWA RESEARCH
CONTRIBUTIONS
MSWA has contributed a record-breaking amount of $3.5 million to neurological research
in 2019-2020. We’re very proud to have funded an array of research, including important
projects based right here in Western Australia. Three local projects that have benefited from
our support this year include:
LIGHT THERAPY
Research by Edith Cowan University
(ECU) investigating the effects
of light therapy on fatigue and
excessive daytime sleepiness in
people living with neurological
conditions.
This MSWA supported research
project will trial specially made
glasses, worn for sixty minutes in
the morning, which deliver targeted
light therapy through the eyes –
evaluating their value in improving
sleep, reducing fatigue and
increasing alertness throughout
the day.
MINDPOD
Another ECU project will begin
trialling a motion capture and
digital gaming system called
Mindpod to deliver therapeutic
treatments for Western Australians
with upper limb impairments – a
common symptom for people living
with a neurological condition.
MSWA is extremely excited about
this supported research project
which will lead to new opportunities
for restoring and improving upper
limb function for individuals with
restricted arm movement.
THE PERRON INSTITUTE
MSWA is proud to continue our
support to the Perron Institute
for Neurological and Translational
Science’s studies into a potential
neuroprotective treatment for
people following a Stroke. While
further study and clinical trials are
required, encouraging pre-clinical
results suggest a novel peptide R18
could reduce Stroke damage by up
to 70 percent if administered early.
7

RESEARCH
RESEARCH
ROUND UP
SUE SHAPLAND RN, BN, MSCN
GENERAL MANAGER STRATEGIC SUPPORTS
AND RESIDENTIAL OPTIONS
FROM MULTIPLE SCLEROSIS NEWS TODAY
Read more at: multiplesclerosis
newstoday.com/news-post
Timing Speed of Eye-to-Brain
Signals May Be Way of Measuring
Myelin Changes, Ian Duncan et al;
PNAS December 26, 2019 116 (52)
27074-27083
Researchers at the University of
Wisconsin-Madison demonstrated
that remyelination could be
assessed using a well-known noninvasive
test called visual evoked
potential (VEP).
Their study in cats suggests that
measuring the speed of signals sent
to the brain by nerves in the eye
could help assess if remyelination is
taking place.
Duncan noted that latency does not
fully recover, because the myelin
newly formed is thinner than it was
prior to being damaged. But “thin
myelin is enough to restore function
and sufficient to protect nerve
fibers in the long run,” he said.
The group stated that they have
confirmed that VEP latencies reflect
the myelin status of the optic nerve
and will provide a surrogate marker
in future remyelination clinical trials.
Cognitive Decline in MS May Not Be
Inevitable or Progressive, Marina
Katsari et al; Journal of Neurology
(2020).
Progressive cognitive decline in
patients with MS may not be as
inevitable as previously thought.
59 patients with clinically isolated
syndrome (CIS) or relapsing–
remitting (RR) MS were evaluated,
over a 10-year course, using
repeatable Neuropsychological
Tests at baseline and follow-up.
The proportion of MS patients
with overall cognitive impairment
was increased by 10% within the
10-year period. When grouped
based on impairment in specific
cognitive domains at baseline,
patients originally impaired showed
improvement at follow-up, while
the opposite trend was observed
for patients non-impaired at
first assessment.
A detailed case-by-case investigation
revealed mixed patterns; several
patients fail in fewer domains at
follow-up compared to baseline
or failing at different domains at
follow-up compared to baseline.
This study suggests a more fluid
picture for the evolution of cognitive
function in a subgroup of MS patients
and contradicts the concept of an
inevitable, progressively evolving
cognitive decline.
Road proximity, air pollution,
noise, green space and neurologic
disease incidence: a populationbased
cohort study; Weiran Yuchi,
et al. Environmental Health
Emerging evidence links road
proximity and air pollution with
cognitive impairment. This study
investigated associations between
road proximity and exposures to air
pollution, and joint effects of noise
and greenness, on non-Alzheimer’s
dementia, Parkinson’s and
Alzheimer’s disease and multiple
sclerosis within a population-based
cohort.
The group assembled health
database cohorts of 678,000
45–84 year old residents of Metro
Vancouver, Canada.
Results: Road proximity was
associated with all outcomes. Air
pollutants were associated with
incidence of Parkinson’s disease
and non-Alzheimer’s dementia.
Noise was not associated with any
outcomes while associations with
greenness suggested protective
effects for Parkinson’s disease and
non-Alzheimer’s dementia.
8

HERE WE PROVIDE SOME SUMMARIES OF RESEARCH SOURCED FROM WEBSITES IN AUSTRALIA
AND AROUND THE WORLD; WE HOPE IT’S OF INTEREST TO YOU.
WE HAVE INCLUDED BOTH MS SPECIFIC AND OTHER NEUROLOGICAL RESEARCH UPDATES.
READ MORE AT
MSWA.ORG.AU/RESEARCHUPDATE
Inflammasome Pathway Linked to
MS and Diseases of Aging Has an
‘Off’ Switch. Danica Chen et al.
An early study suggests that
immune cells have an inflammation
‘switch’ that involves the NLRP3
inflammasome pathway, and
targeting it may prevent or even
reverse chronic inflammation seen
in diseases like MS and in conditions
associated with ageing.
The inflammation marking
MS has been linked to NLRP3
inflammasome activation.
The study, “An Acetylation Switch
of the NLRP3 Inflammasome
Regulates Aging-Associated Chronic
Inflammation and Insulin Resistance,”
was published in the journal
Cell Metabolism.
Chronic inflammation, resulting
from an overactive immune
response, can intensify with age
and lead to a variety of illnesses,
from Alzheimer’s and MS to cancer
and diabetes. The molecular
triggers responsible for provoking
the immune system, however, are
not clear.
A team, led by researchers at
the University Of California (UC),
Berkeley, discovered a molecular
“switch” that controls chronic
inflammation in the body.
The scientists used mouse
models of aging and developed
a cell-based system that models
aging-associated inflammation.
It simulates the effects of
inflammation over metabolism
— including for insulin resistance,
a pre-diabetic condition marked
by cells that no longer respond well
to insulin.
“My lab is very interested in
understanding the reversibility of
aging,” said Danica Chen, Professor
at UC Berkeley.
This suggests that targeting NLRP3
acetylation might actually reverse
inflammatory conditions.
“These results establish the
dysregulation of the acetylation
switch of the NLRP3 inflammasome
as an origin of aging-associated
chronic inflammation and highlight
the reversibility of aging-associated
chronic inflammation and insulin
resistance,” researchers wrote.
“I think this finding has very
important implications in treating
major human chronic diseases,”
Chen said. “I think it’s more
urgent than ever to understand
the reversibility of aging-related
conditions and use that knowledge
to aid a drug development for
aging-related diseases.”
FROM THE MS TRUST
Read more at: mstrust.org.uk
20% rise in the estimated number
of people living with MS in the UK.
New data from Public Health
England and the MS Society reveals
that the number of people living
with MS in the UK has risen to over
130,000 – approximately 1 in every
500 people.
The new UK MS prevalence figure
is over 20% more than previously
thought, rising from 109,000 people.
The latest research also shows an
increase in the incidence of MS, i.e.
the number of newly diagnosed
each year. The number of diagnoses
has risen from an estimated 5,000
in 2017 to 6,700.
The number of people living with
MS in all four of the UK nations has
also increased; with an estimated
15,750 in Scotland, 5,600 in Wales,
105,450 in England and 4,830 in
Northern Ireland.
The new figures don’t mean the
risk of developing MS has increased.
The increase could be related
to improved survival in people
with MS over the past 30 years.
Another reason could be changes
to diagnostic criteria resulting in
people being diagnosed with MS
earlier in life.
STROKE RESEARCH UPDATE
From Science Daily.
Read more at: sciencedaily.com
Genetic Liability to Insomnia
and Cardiovascular Disease Risk.
Circulation, 2019; Susanna C.
Larsson, Hugh S. Markus.
Data from more than a million
people found that genetic liability
to insomnia may increase the risk
of coronary artery disease, heart
failure and stroke. Among types of
ischemic stroke, genetic liability to
insomnia was primarily associated
with an increased risk of large artery
stroke.
"It's important to identify the
underlying reason for insomnia
and treat it," Larsson said.
"Sleep is a behavior that can be
changed by new habits and stress
management."
9

RESEARCH
MOTOR NEURONE DISEASE
From News Medical Lifesciences
Read more at: news-medical.net/news
Could high cholesterol lead to
motor neurone disease?
A new study published in the journal
Brain: a Journal of Neurology
suggests a novel hypothesis on
how MND develops as a result of
abnormal cholesterol metabolism
within nerve cells. Researchers say
this could help diagnose and treat
the condition more accurately.
The researchers found some
evidence that MND is linked to an
abnormal build-up of cholesterol
and other lipids within cellular
compartments. However, this
could be due to any of a host of
abnormal genes.
MND is an umbrella term, with many
different types of illness grouped
in this category. Amyotrophic
lateral sclerosis (ALS) is a fatal
disease and the most common
MND, affecting about 2 per 100,000
individuals worldwide.
There is no cure at present.
Over 2000 deaths occur each
year due to this condition, but
the cause is still unknown. Some
have speculated that it could be
due to genetic mutations, heavy
metal poisoning or pollutants in
agricultural occupations.
Andrew Crosby, Lead Author says
“For years, we have known that a
large number of genes are involved
in MND, but so far it hasn’t been
clear if there’s a common underlying
pathway that connects them. Our
group’s previous research identified
13 genes which if altered may cause
the condition, and some of these
discoveries have proven crucial
as the genes we identified are
directly involved in the cholesterol
processing pathway.”
PARKINSON’S RESEARCH
From Parkinson’s UK
Read more at: parkinsons.org.uk/
news/gut-bacteria-could-guardagainst-parkinsons
Parkinson’s and gut health
This research project, co-funded by
Parkinson’s UK, builds on previous
research linking brain function to
gut bacteria.
New research suggests that a
bacteria which boosts digestive
health can slow – and even reverse –
the build-up of a protein associated
with Parkinson’s.
Researchers from the Universities
of Edinburgh and Dundee have
identified a probiotic, so-called
good bacteria, which prevents the
build-up of a protein which is linked
with Parkinson’s.
In people with Parkinson’s, alphasynuclein
protein builds up and
forms toxic clumps which are
associated with the death of
dopamine producing nerve cells.
The loss of dopamine is what causes
motor symptoms in Parkinson’s.
Using roundworms, scientists
found that a probiotic called
Bacillus subtilis could not only
protect against the build-up of this
protein, but can also clear some of
the already formed protein clumps.
These new findings could pave
the way for future studies that
gauge how supplements such as
probiotics impact Parkinson’s.
The initial findings are promising,
but there is still work to be done
to investigate the effectiveness
of Bacillus subtilis in treating
Parkinson’s symptoms.
Lead researcher, Dr Maria Doitsidou,
from the Centre for Discovery
Brain Sciences at the University of
Edinburgh, said: “The results provide
an opportunity to investigate how
changing the bacteria that make
up our gut microbiome affects
Parkinson’s. The next steps are
to confirm these results in mice,
followed by fast-tracked clinical
trials since the probiotic we tested
is already commercially available”.
HUNTINGTON’S DISEASE UPDATE
From Science Daily.
Read more at: sciencedaily.com/
releases
An international clinical trial
has found that a new drug for
Huntington’s disease is safe, and
that treatment with the drug
successfully lowers levels of the
abnormal protein that causes the
debilitating disease in patients.
"This is a tremendously exciting and
promising result for patients and
families affected by this devastating
genetic brain disorder," said Dr. Blair
Leavitt, neurologist and Director
of research at the Centre for
Huntington’s Disease at UBC. "For
the first time, we have evidence that
a treatment can not only decrease
levels of the toxic disease-causing
protein in patients, but that it is also
safe and very well tolerated."
Huntington’s disease (HD) is a
fatal genetic neurological disease.
It usually develops in adulthood
and causes abnormal involuntary
movements, psychiatric symptoms
and dementia.
About one in 10,000 people in
Canada have HD. To date, no
effective treatments have been
proven to slow down progression
of this disorder. HD is caused by a
single known genetic mutation,
and each child of a carrier of the
mutation has a 50 percent chance
of inheriting the disease.
Note: WA participants, with early
stage Huntington’s disease, and
who meet additional criteria,
are sought for a randomized,
placebo-controlled trial.
Contact the Perron Institute on
6457 0200
10

NURSING
FLU SEASON -
PROTECTING
YOURSELF
AND OTHERS
SUE SHAPLAND RN, BN, MSCN
GENERAL MANAGER STRATEGIC SUPPORTS
AND RESIDENTIAL OPTIONS
This coming flu season will be very different to others. COVID-19 is bringing many changes to
how we currently live our lives. While we can’t change what is happening, we can make some
positive changes and embrace the Health Department’s preventative hygiene measures.
It’s important we support each other
(albeit not physically), and while we
remain isolated and in our home,
let’s stay connected with others.
Good mental health is important all
year round, and especially during
these uncertain times. If you are
feeling down, speak to someone
you trust, or visit one of the great
support websites, including Beyond
Blue for information and advice.
Flu vaccinations are highly
recommended for everyone
over the age of six months, and
especially important for those
at risk including the young, the
elderly and those with pre-existing
illnesses. This includes people
living with neurological and other
chronic conditions.
My advice is to speak to your
treating neurologist or GP, as they
best understand you and can make
specific recommendations.
While it can happen at 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).
PREVENTATIVE MEASURES FOR THE
FLU AND COVID-19
/ Annual flu vaccination – although
this won’t cover you for COVID-19,
it reduces the risk of getting both
the flu and COVID-19
/ Practice good hygiene
• wash your hands frequently
• bin used tissues
• avoid sharing used
dishes/towels
• cover coughs and sneezes
/ Self-care at home
• social distancing –
keep 2 metres from others
• get plenty of rest
• drink plenty of water and
non-alcoholic drinks
• keep warm
• eat healthy foods
• get plenty of fresh air
• avoid exposure to
cigarette smoke.
If you live alone let someone know
if you aren’t feeling well so they can
keep an eye on you.
You can generally treat the
symptoms of a mild cold or flu
at home and get better within
7-10 days without treatment. If
necessary, your local pharmacist
can assist with over the counter
treatments. See your doctor if you
are unwell and experiencing high
temperatures, headache, breathing
difficulties or a rash, or if you are at
all worried.
You can also speak to a registered
nurse for free advice 24/7 by calling
Health Direct on 1800 022 222.
If you would like to speak to
someone about the Coronavirus,
please call their 24/7 hotline on
1800 020 080.
11

NURSING
NURSING SERVICE
IN THE ERA OF
THE NDIS
Members of the MSWA
Nursing team.
We are happy to announce that the Nursing team have embraced the changes the NDIS has
brought with it and has evolved accordingly, all in the best interests of our valued Members
and Clients.
The current supportive role the
nurses provide will continue,
with the addition of the following
services:
Continence Management &
Catheter Care
The range of services we now offer
has expanded to include Continence
Management & Catheter Care. The
MSWA Nurse will assist our Members
and Clients with the following
related to Continence Care:
/ Interpreting bladder and bowel
diaries
/ Providing information on suitable
continence products
/ Changing catheters (frequency
of change dependent on GP/
Urologist instructions)
/ Facilitating Continence
Education Workshops
/ Providing general advice
regarding catheter care
Our team of nurses can complete
referrals to the Coloplast Care
Nursing Support Services, specific
for intermittent catheter users.
An MSWA Nurse can be available
to provide support at these clinic
appointments if the Member/Client
wishes.
Multiple Sclerosis (MS) & Motor
Neurone Disease (MND) Clinics
It is with pride we introduce our 6th
MSWA Nurse Supported MS Clinic,
located at the Perron Institute.
Our nurses also support the
increased number of MND clinics
at Fiona Stanley Hospital, Perron
Institute and Midland Hospital.
In the future we envisage future
MSWA Nurse Supported Clinics for
other neurological conditions as
well (e.g. Parkinson’s), and we look
forward to this time.
The MSWA Nursing team are
grateful for the opportunity to walk
beside our Members and Clients
through their life’s journey and we
will endeavour to evolve as a team
in response to changing needs.
VANISHREE CHETTI
NURSING MANAGER
Vanishree Chetti joined the MSWA Team as Nursing Manager in October 2019.
Throughout my 20 year nursing career, commencing in South Africa and
continuing in Australia over the past 12 years, my love for the profession
has not faded. My time working in the Aged Care Industry, ICU, ER, and
International Medical Evacs, brought with it exciting and interesting
experiences. The fields of Neuropsychology and Neuroscience have always
been areas of interest for me. I therefore am grateful for working in an
organisation that walks alongside its clients, supporting them through their
individual MS journey, whilst heavily involved in MS research and research
in other neurological conditions. Now that I have been welcomed into the
MSWA family, I am looking forward to leading an already remarkable team
of nurses.
“The best way to find yourself is to lose yourself in the service of others” –
Mahatma Gandhi.
12

CUSTOMER ENGAGEMENT DEPARTMENT
A FRESH LOOK FOR NDIS SUPPORT
When the idea for a National Disability Insurance Scheme
first surfaced in 2009, organisations around the country
began to speculate about the short and long term effects
of this new funding model. Eleven years and 338,982
active participants later the full impact of this personcentred
approach to disability services is becoming clear.
Massive, the impact will be massive!
As Mark Jackson, a Victorian-based
disability policy expert states, "The
disruptive impact of the NDIS
funding model on traditional
providers is going to make Uber's
impact on the taxi industry or
Airbnb's effect on hotels, pale into
insignificance." The environment
in which MSWA has functioned for
the past half-century has drastically
changed and, while this presents
significant opportunities, there is
also a real need for change within
the organisation if it wishes to
continue its success.
The introduction of the MSWA
NDIS Department was the first
step in this process. Since 2016,
our team has helped almost 1,000
people complete their eligibility
and planning processes and gain
access to the scheme. Now with
more and more people entering
the scheme, the Department has
changed once again to focus on
the whole Customer journey and
improved customer service. The
MSWA NDIS Department, as it was
once known, is now the Customer
Engagement Department with
an expanded remit and more staff
to focus on all the bits outside of
Service Delivery, in support of you,
the Customer. These new roles and
titles are outlined below:
/ Customer Relationship Coordinators
(CRC): Relationship Coordinators
focus on assisting you, as a new
or existing Customer, to navigate
the NDIS planning process.
From the first enquiry, through
eligibility and planning, you will
have a dedicated CRC to support
you along the way. These team
members can also attend planning
meetings with you to help you to
get the best plan possible.
/ Customer Liaison Coordinators
(CLC): Once you have an NDIS
plan the next person to support
you on your journey will be
an MSWA Customer Liaison
Coordinator, who works one-toone
and helps to coordinate your
MSWA services and answer your
questions along the way. The aim
of the CLC position is to have a
single point of contact for you,
the Customer, to ensure that you
receive the full NDIS benefit. This
role is an amalgamation of the old
CLO and Community Coordinator
positions to now provide a whole
organisation approach to Service
Coordination.
/ Customer Service Coordinators
(CSC): Now that you have your
services in place, we want to make
sure that they remain exceptional,
so the Service Coordinators will be
checking in from time-to-time. The
Service Coordinators will follow up
with Customers throughout their
plans to gather feedback – both
good and bad – to ensure our service
continues to meet your needs.
A goal of MSWA is continuous
improvement and in order to do
this, we need to know where the
gaps are in service delivery.
/ Operations Team: Behind every
good team is an even better
one working to make sure
everything is where it needs
to be. Our Operations team
allocates funding to service areas,
prepares and sends out Customer
statements and generally keeps
things running smoothly. They
also keep a keen eye on all things
NDIS to ensure MSWA keeps
ahead of the still-developing
Scheme.
PLEASE NOTE:
Support Coordination is a different
service which is funded under the
NDIS and acts independently to help
you to improve your understanding
of the NDIS and connect you to
service providers.
As the Customer Engagement
Department becomes further
embedded into MSWA Member
and Client Services it is our hope
that the experience for you and all
our NDIS Customers will continue
to improve. This service support is
provided at no cost to you and is just
one of the ways we are changing
to meet the demands of the new
reality that is the NDIS. If you have
any questions about the Customer
Engagement Department or
our role within MSWA, please
don’t hesitate to contact me at
geoff.hutchinson@mswa.org.au
GEOFF HUTCHINSON
MANAGER
CUSTOMER ENGAGEMENT
13

COUNSELLING
ENHANCING POSITIVE
RELATIONSHIPS
The seven pillars of wellbeing are: education, stress management, spirituality/meaning,
exercise, nutrition, connectedness, and environment (Dr Craig Hassed, The Essence of Health).
This article focuses on one of these pillars – enhancing connectedness.
What can you think of that brings
us closer together and strengthens
our connections with others?
Examples of values that build
connection include love, harmony,
respect, vulnerability, compassion,
gratitude, and forgiveness. So
how can we enhance these? Rick
Harrington, in Stress, Health &
Well-Being makes the following
suggestions for fostering positive
relationships:
Express appreciation for another
person’s likeable qualities and
behaviours.
Show empathy – listen fully to the
other person. Clarify by repeating
what you’ve understood them to
say before responding. Philosopher
Paul Tillich said “Love is Listening”.
Use clear messages to respectfully
express your feelings, observations
and needs, such as using
I-messages to express your feelings.
An example may sound something
like “I feel worried when you come
home late without calling me”,
rather than “You’re late, where have
you been?”.
Be clear about your boundaries
and limits – state firmly and
respectfully what you will and won’t
accept from others, and repeat this
as often as needed.
Be assertive – respond with just
enough assertiveness to achieve
your aim, without going over
the top.
Negotiate – normal and necessary
for resolving issues and addressing
everyone’s needs. Time out can
be helpful if you get stuck, and
then persist by returning to the
discussion when tensions have
cooled and perspective is regained.
Be direct – avoid being drawn into
a triangle in someone else’s conflict,
and also avoid drawing a third party
into your conflict. Deal directly with
the other person.
Show gratitude – expressing
appreciation helps promote good
feelings and enhances relationships.
Forgive both others and yourself.
This can be hard to do but
can be liberating and helps
repair relationships.
Help others – this is generally a win/
win situation where the helper and
the person they are helping both
benefit. Just a small act of kindness
can be uplifting. However, self-care
is important when helping others
in order to avoid overdoing it (for
example as a long term carer of a
loved one).
Accept help from others – just as
important as giving help to others.
We all need help and compassion
at times and being able to accept
help can reduce stress and enhance
relationships. Sometimes help
comes from family, friends or
strangers, and sometimes it can be
professional help from a counsellor
or other health professional.
LIL O’TOOLE
MSWA COUNSELLOR
14

COUNSELLING
MYTH BUSTING
THE STIGMA
OF ATTENDING
COUNSELLING
ROB ORR
MSWA COUNSELLOR
“I don’t need to see a counsellor, I’m not crazy.”
Therapy or counselling remains
mysterious to most people. What
really happens in that room? If I
go to a counsellor does that mean
I'm crazy, weak or a failure? Will
it change how friends, family
and work colleagues see me?
Unfortunately, as a result of this
concern many people decide not
to pursue counselling, despite
experiencing significant emotional,
physical or mental distress.
Negative attitudes towards
attending counselling exist in our
culture but can also be carried
internally – in other words your
own personal beliefs about it being
unacceptable to have a mental
health concern will influence you as
well. This is especially true for men,
as the traditional male role includes
being tough, independent and selfsufficient
which increases concerns
about seeking outside help.
Busting the myth – the truth
is most people who attend
counselling do not have a
serious mental illness. They
often do have serious life
challenges, or are going
through difficult life changes,
that may be stretching their
current ability to cope.
This, in turn, may negatively affect
their wellbeing and ability to
function as well as they would like.
Examples of serious life challenges
can be dealing with work-related
stressors; financial problems;
chronic health issues or a recent
health diagnosis; and family or
parent/child conflict. Examples
of difficult life changes can be
the death of a family member or
friend; the ending of a romantic
relationship or close friendship;
family/couple changes related to the
addition of a child; getting married
or divorced; caregiving for loved
ones due to illness or disability; and
decision-making challenges related
to these life choices.
These are just some of the reasons
why people decide to go to
counselling. So, if you are going
through one or more of these
challenges at the same time, you're
not alone. The effects are often
cumulative, which is generally
referred to as a 'pile-up' of stressors.
Counselling during these times can
be helpful in providing both the
support and skills to better address
these life challenges. Ultimately, it
is an investment in your emotional,
physical and mental health.
You don’t have to be crazy to see a
counsellor, but you do need courage
to address issues and make some
changes in your way of dealing with
life’s demands.
If you would like to make an
appointment with an MSWA
Counsellor, please call the
Counselling Department on
9365 4811.
15

DIETETICS
FOOD
MATTERS
PAMELA WINDRAM
MANAGER SPEECH PATHOLOGY & DIETETICS
Have you either lost or gained
any weight unintentionally?
Do you have a PEG tube
or take nutritional supplements
(eg drinks or puddings)?
Have you found that your mobility
and/or strength have declined?
Does your fatigue prevent you from
attending appointments / working /
doing enjoyable activities?
Are you on a texture modified diet
and/or thickened fluids?
Do you have a poor appetite?
Do you have any symptoms
such as diarrhoea,
constipation or reflux?
Do you have diabetes?
Have you had previous
pressure injuries?
If you have answered ‘Yes’ or ‘Not
sure’ to any of these questions
you may need to see one of
MSWA’s dietitians.
Living with a neurological condition
such as MS may present challenges
to getting a well-balanced diet. You
may find it difficult to get adequate
nutrients to sustain your energy
levels throughout the day. Good
nutrition is even more important
when you are feeling unwell.
At MSWA our dietitians work with
you to assess your nutritional
needs and tailor dietary advice and
information to suit those needs.
If you have specific dietary needs
caused by other chronic conditions
such as diabetes, a dietitian’s
advice is invaluable. Many people
with neurological conditions have
difficulty receiving adequate
nutrition through eating and
drinking normally. Some may need
special nutritional supplements
or be fed via a feeding tube using
specially formulated liquid feed.
Dietitians can determine how much
feed an individual requires and can
assist in trouble-shooting any issues
that may occur.
Accessing a dietitian for your
disability-related health condition
and supports (including equipment
and consumables) is now possible
under the NDIS. To speak to one
of our dietitians, please contact
us at dt.referrals@mswa.org.au or
call 6454 2860.
Pamela Windram commenced employment at MSWA in June 2019 as
Manager of Speech Pathology and Dietetics after working for a significant
period in the aged care sector. Prior to that she worked with clients with
acquired brain injuries. Pamela has an interest in the augmentative
communication devices which provide considerable assistance to those
with neurological difficulties who find communication difficult. The
advancements currently taking place in this sector are enabling clients to
experience communicative autonomy, possibly for the first time in years.
Pamela is fortunate to work with a team of passionate speech pathologists
and Dietitians who are dedicated to providing the most current evidencebased
support to all their Customers.
16

INDIVIDUAL OPTIONS
KINDNESS OF HEART MAKES FOR
AN IDEAL CARE SUPPORT WORKER
There are many distinct
qualities a person needs
to have to be a Care
Support Worker, including
compassion and kindness,
patience and energy, as
well as not being afraid of
hard work.
MSWA Care Support
Worker, Bonface
Ndungu, with Michael
and Mariana Cuza.
Bonface Ndungu, a Care Support
Worker for MSWA, has these traits
in abundance.
“The job isn’t for everyone,” Bonface
said.
“But for some of us, it’s a perfect fit.”
Bonface and his Care Support
Worker colleagues at MSWA help
Customers with a variety of tasks
at their homes including cooking,
shopping, personal care, cleaning
and laundry.
“Anything that a Customer might
need done around the house, I can
do for them. Plus, I can proudly say
that I’m a very good cook!”
Another vital component to the
job is organising social activities for
Customers who may otherwise be
on their own.
“Sometimes we go to the movies,
watch sport on TV, go for a walk in
the park or simply have a cup of
coffee and a chat.
“These things are so much more
enjoyable when you can do it with
someone else.”
Bonface has been with MSWA for
three years but has spent 10 years in
the business of caring for others.
“I worked in aged care for many
years and I really believe in saying
thank you to the older generation;
to give back to those who looked
after us,” Bonface said.
“Working with people who live with
a neurological condition is similar in
that I feel it’s a real privilege to help
people who aren’t always able to
take care of themselves.”
There are, of course, challenges
when you are a Care Support
Worker, as some Customers may
have communication difficulties
and it’s often quite physically
demanding.
“Some Customers are non-verbal,
so you need to work out a way to
communicate effectively. I find out
ways to hear their stories to help
me understand what makes them
happy and motivates them.
“I also enjoy making people smile –
it’s important to have fun as much
as possible.”
Many Care Support Workers have
specialised training and Bonface is
currently finishing his Certificate
IV in Disability, hoping to progress
his career as a team leader or
coordinator.
“I love working at MSWA. It is such a
fulfilling, rewarding role.
“It’s always important to
remember that no one
asks to have a neurological
condition and that our
Customers want to be
treated in the same way
as everyone else – with
kindness, compassion
and respect.”
If you would like to find out
more about MSWA’s In-home
Care Support Service, please visit
mswa.org.au/support-services/inhome-care
17

MSWA MEMBER
FAME AND TIM
I’m famous! Well, I met someone famous, and I’m sure
it brushed off on me. I went to see Tim Ferguson in early
February at the Perth State Theatre, and after the show I
bought his book, The Cheeky Monkey so I could speak to him
when he signed it. From now on I can claim to know him
personally. He is pretty well known, and therefore famous, so
now I am famous too.
Image courtesy of Currency Press
I did the same thing a couple
of years ago when Tim Winton
launched a new book. I bought it so
I could meet him and claim forever
more to know him. Hmm, I can see
a bit of a theme here. It’s the Tims in
my life that make me famous.
Tim Ferguson, for those who may
not remember, came to fame as
a member of the Doug Anthony
All Stars (DAAS), along with Paul
McDermott and Richard Fidler.
I mentioned that to a young
acquaintance of mine recently
and she just looked at me blankly.
I guess even knowing who DAAS
are ages me. DAAS were a musical
comedy trio who were most active
between 1984 and 1994. I remember
them as being hilarious back then,
and Tim has certainly not lost his
talent for comedy.
Tim Ferguson has Multiple Sclerosis.
According to my research he has
possibly had symptoms since he
was 19 years old. I remember him as
being a very active and sometimes
positively bouncy member of
DAAS, but as time progressed he
began to need a walking stick, and
these days he uses a wheelchair.
Over the years he has written several
books, directed films and written
screenplays, teaches and lectures
on comedy and screenwriting, and
continues to perform in films, TV
shows and stand up (or sit down)
comedy. He is certainly not lazy.
When my friend and I went into
the city to see his show we arrived
early and went for a walk to fill in
time. As we were about to cross a
busy road, who should be crossing
in the other direction but Tim
Ferguson? He smiled and nodded
at me, acknowledging our common
experience of using wheelchairs.
Later, when we went into the small
theatre, we managed to snag seats
in the front row, only a couple of
metres from Tim on the stage. I’m
sure he was relieved to see a familiar
face in the audience when he saw
me, though he hid it well.
His show was called The Art of
Funny and was about how to write
comedy. It was not a dry lecture
such as might have been expected
back in my University days, but was
liberally scattered with examples
of humour. To demonstrate using
puns, or phrases with double
meanings, he said:
“When the cannibal showed up
late to lunch, they gave him the
cold shoulder.”
At one point he even got the
audience involved. We were given
the task of thinking of a title of a
love song, then changing, adding
or deleting one word to alter the
meaning into something funny. My
companion and I looked at each
other blankly. I couldn’t think of a
single song. I’m not sure where my
brain had gone. The example Tim
Ferguson gave was the song “Angel
of The Morning” which he changed
to “Angel of The Morning After”.
After the show, when I finally got to
meet Tim as he signed my book, he
mentioned seeing me as we crossed
the road earlier. I tried not to swoon
in case I fell out of my wheelchair.
I told him that his book would be
useful for me as I often try to include
humour in the articles I write for
the MSWA magazine. He asked
me if I had MS. As we chatted, I felt
the overwhelming burden of fame
descending on me but I managed to
keep smiling and talking. I think that
is the hallmark of a famous person.
Henry Kissinger once said, “The nice
thing about being a celebrity is that,
if you bore people, they think it’s their
fault.” I find that very reassuring.
The Cheeky Monkey is available
from currency.com.au
ROS HARMAN
18

MSWA MEMBER
ACCESSIBILITY:
STATE THEATRE
CENTRE OF WA
The State Theatre Centre is one of
the newer venues in Perth and as
such, has good facilities for people
with disabilities. Information
about this can be found at:
ptt.wa.gov.au/venues/state-theatrecentre-of-wa/your-visit/accessibility/
Bookings and enquiries can
be made by calling 6212 929.
There are three parking venues
close by with several ACROD bays
in each. The theatres are all easily
accessible by wheelchair.
When booking tickets it is important
to telephone and speak to a staff
person to explain your specific
needs and they will do their best to
accommodate them.
There are accessible toilets at the
venue, and lifts to the different
levels in the building.
ANNOUNCEMENT: ACTIVITIES ARE ON HOLD
At the time of print, all face to face MSWA group activities are temporarily on hold.
This includes MSWA group activities such as:
/ Outreach
/ Physio group sessions
/ Events
/ Seminars or group services
Any individual services and support, currently delivered directly to you, remain as is.
This decision has been made following Federal Government advice about the
COVID-19 situation and will be reviewed at the end of April.
The wellbeing, safety and security of our community is paramount.
Thank you for your understanding and support.
If you have concerns and would like to talk to us about alternatives for you at this time,
please contact us on 9365 4888 or email customerservice@mswa.org.au
19

BRAND, MARKETING & SALES
FUNDRAISING
NEWS
COMMUNITY EVENTS
AND FUNDRAISING
FLUORO FOR NEURO
In February, we were incredibly
excited to launch Fluoro for Neuro, a
new and fun campaign that anyone
can get involved in.
We’re challenging people to ‘go
fluoro’, as little or as much as they
like, to help us raise awareness
and vital funds to improve the
support and services we provide to
thousands of Western Australians
living with a neurological condition.
Participants can choose to fundraise
for a particular condition such as
MS, Parkinson’s, Huntington’s,
Acquired Brain Injury, MND or
Stroke, or simply choose ‘MSWA’ to
support all neurological conditions.
We’ve been amazed at the different
ways people have raised awareness
– wearing fluoro to the gym, getting
fluoro manicures, even skydiving in
a Fluoro for Neuro t-shirt!
For more information and to join
the fun, visit mswafluoroforneuro.
com.au
THE MSWA OCEAN RIDE
Powered by Retravision
24 November, 2019
In November we cheered on
participants in the tenth annual
MSWA Ocean Ride, an iconic cycling
event that takes riders along WA’s
beautiful coastline from Fremantle
to Hillarys.
The event continues to grow and
in 2019 we added a new 120km
challenge, increasing the number
of ride distances to six, to cater for
people of all ages and fitness levels.
Over 1,400 people registered for
the event.
Above: MSWA Member, Nicolette
Murphy and son, Nathaniel.
Sandy Innis took part as a
member of the Mandurah Team.
The annual Members Ride, in
which MSWA Members and Clients
who are living with a neurological
condition get involved during their
weekly physiotherapy classes, had
a fantastic turnout – 98 Members
completed the challenge.
Sharon Lamont won most
kilometres ridden in the
Individual Members Ride.
20

Medal presentation at Rockingham Outreach –
‘Rockingham outride the rest!’
The Butler, Rockingham, Mandurah,
Wilson, Geraldton, Albany,
Beechboro and Kelmscott Centres
all took part in the Stationary
Cycle Challenge.
Congratulations to the team at
Rockingham, the Outreach Centre
that took the title of most kilometres
ridden in 2019.
Thank you to everyone who took
part. The event raised a total of
$251,322 for people living with
neurological conditions in WA.
MSWA MEGA HOME LOTTERY
– SOLD OUT!
Tickets in the recent MSWA Mega
Home Lottery sold out in a record 13
DAYS! On 6 March, the Grand Prize
winner received a life-changing
phone call – Brittanie Antulov
(Ticket number 65,632) will soon be
living the ultimate riverside lifestyle
with the incredible $3.3M Grand
Prize Package, including a stunning
$2.2M home in beautiful Applecross,
a Range Rover Sport and $1M in
cash! Over 11,000 other lucky prize
winners have also been announced!
Thank you to everyone who
supported the MSWA Mega Home
Lottery. Every ticket sold makes
a life-changing difference to
thousands of Western Australians
living with a neurological condition.
Visit the website and follow on
social media to make sure you
don’t miss out on your ticket in the
next MSWA Mega Home Lottery,
which is sure to sell out fast!
mswalottery.com.au
MSWA Mega Home Lottery winners.
21

MEMBER AND CLIENT SERVICES
RECREATION SNAPSHOT
At MSWA, we are consistently awed by the breadth of fun and ability-friendly activities our
Customers undertake in their spare time.
The advantages of physical
recreation and the learning of
new skills to mental wellbeing are
well recognised.
If you are considering taking up a
new hobby in 2020, here are some
Member and Client favourites to
inspire you:
DANCE
There are a wide range of dance
schools across WA that welcome
learners with disabilities, including
dancers in wheelchairs.
wadancedirectory.com.au/specialneeds
GOLF
Empower Golf runs golf clinics and
coaching across Australia to support
disabled individuals returning or
wanting to improve their golf. In
Perth, Wembley Golf Course is home
to a Paragolfer mobility device and
other adaptive equipment, along
with training clinics.
empowergolf.com.au
wembleygolf.com.au
SURFING
The Disabled Surfers Association
gives people with varying
disabilities the opportunity to have
a safe, happy and dignified surfing
experience. They invite you to go
along and experience it for yourself
at their Perth, South West or Great
Southern branch.
disabledsurfers.org/wa/
SAILING
Sailability WA provides sailing
opportunities for people with a
disability regardless of their ability,
mobility or circumstances. A variety
of vessels are utilised, from small
stable two-person dinghies to 20
foot yachts.
www.sailabilitywa.com.au
BEACH-GOING
Many town and city councils –
including Dunsborough, South
Perth, Broome and Mandurah –
have beach access wheelchairs
available for use on their foreshores.
Contact the local council or visitor
centre to enquire.
FISHING
Trained and experienced
volunteers from organisations
such as Fishability can assist you to
experience the joy of fishing using
purpose-built motorised rods, reels
and fishing rod holders.
fishability.org.au
PLAY
Play is not just essential for kids,
it can be an important source of
relaxation and stimulation for adults
as well. Western Australia has some
fantastic accessible playgrounds
to take your young children or
grandchildren, including the award
winning Harbour Playground in
Rockingham, designed to maximise
access and inclusion for people of
all ages and abilities.
Contact the local council or visitor
centre to enquire.
An MSWA Member boarding a
dinghy in Bunbury.
BOWLING
Bowling clubs throughout Western
Australia are social hubs that build
and strengthen communities.
Through bowls, club members are
able to maintain their physical and
mental health, build strong social
networks, and experience a sense
of opportunity, achievement and
inclusion.
Bowls WA currently runs a
BowlAbility Program, hosted at the
Kardinya Bowling Club.
bowlswa.com.au/inclusive-bowls
Recreation activities can sometimes
be funded as part of your NDIS
plan. Please contact our Customer
Engagement team on 9365 4824 or
customerservice@mswa.org.au
discuss your options.
to
For a full list of accessible
recreational activities in WA, please
visit wadsa.org.au
22

MSWA MEMBER
TAKE UP THE
CHALLENGE
OF GOLF
PETER BROMLEY
MSWA MEMBER
MSWA Member, Peter Bromley, and coach, Richard Brain,
on the driving range at Wembley Golf Course.
I just have to share this one with you. It’s made a huge difference to my life, and for the better,
which is a pleasant change when living with a progressive neurological condition – in my case MS.
I’m talking about getting into golf. I
never imagined this to be possible
and reluctantly back in the 80’s,
took golf off my list of things I could
do and, like many, got on with
living life and concentrating on the
things that I could do. But golf was
probably one of the few things that
I really missed so, when I heard that
Empower Golf were running clinics
at Wembley Golf Course for people
with disabilities and could also
accommodate those in wheelchairs,
I thought “let’s give this a go”.
The first session was on the driving
range and I was excited, fearful, but
blindly optimistic that everything
would be OK. The coach and staff
were so helpful and encouraging –
they had obviously done this before.
I transferred from my wheelchair
to a piece of equipment called the
‘ParaGolfer’ and was strapped in,
below the knees and across the
chest. The controls were like those
of an electric wheelchair. I was
moved into position in the tee bay,
tilted to near vertical, shown how to
hold the club and I faced the ball.
Now it was all up to me.
My first two swings were ‘air swings’.
To the non-golfer, that means I
missed the ball completely – but
then I made contact. The ball left
the tee at great speed, travelling a
distance of what seemed like 300m
but was probably more like 30m –
but it was straight and made the
right noise as the club hit the ball.
Tears welled in my eyes – it had been
35 years since I last played this game
of golf. I could have jumped for joy
but couldn’t as I was strapped into
this ‘ParaGolfer’ and had to settle for
a cheesy grin - which lasted all day.
Now the ‘ParaGolfer’ makes the
whole thing possible for so many
people with all different neurological
conditions and levels of ability.
Manufactured in America, it is
purpose built, similar to a power
wheelchair but larger, with two fat
tyres at the front and one at the
rear for turning. It also has similar
controls, but has the additional
function of tilting into the vertical
position. It is also very stable which
gives one confidence. Once you get
in the swing of it, pardon the pun, the
‘ParaGolfer’ can be used on the course
and even on the putting greens. If
you have problems with gripping the
club then aids are available. The golf
clubs are also provided.
The ParaGolfer was donated by Golf
WA and the Town of Cambridge,
who own and operate the Wembley
Golf Course, and provide all the
equipment, coaching, and the use
of the golf range free of charge
at their “Come and Try” clinics.
The coach and staff at Wembley
are incredibly professional and
dedicated to helping us to achieve
at this game called golf. They
are constantly looking for more
sponsors so they can acquire more
equipment and introduce unique
ways of doing things to make this
gem available to everyone with a
disability and wanting a challenge.
With me it’s been a three way
conversation between the coach,
physiotherapist, and Curtin
University physio students at
Sir Charles Gairdner Hospital in
Neurology Outpatients, working to
strengthen muscles and improve
movement, range, and endurance.
In the last 6 months I have improved
physically and mentally and have a
really good feeling about myself.
Golf is now on my list of things I
can do. I think I’m getting serious
about this frustrating game of golf.
I recently splashed out on a $10 golf
glove from the pro shop – now that
is taking the game seriously.
The Empower Golf website
empowergolf.com.au is a good
starting point to learn more about
the clinics or a call to Wembley Golf
Course on 6280 1300 to get you
started – it’s worth giving it a go.
23

ACCOMMODATION & OUTREACH
OUTREACH PROGRAM
NICOLA RYAN
SENIOR OUTREACH COORDINATOR
Beginning Outreach for 2020 was particularly special as it
was the first time I was able to arrange for all the Outreach
Coordinators to meet at the MSWA facility in Wilson. This
enabled us to have some additional training on our computer
system. It was a great effort made by all to attend; in particular
our country coordinators from Albany and Bunbury.
In a couple of cases, the ladies
were meeting each other for the
first time. Putting a face to a name
makes working together so much
easier. Even though there are many
kilometres between all of us, the
fact remains that we are all doing
the same role so having the support
for each other is very important.
Ideas were shared over the training
time and encouragement passed
on to those who are very new in
the role.
As a team, this group of coordinators
will be making a difference for
all our Members attending the
different Outreaches. Exciting
times ahead for us all and, when
activities resume as normal, I for
one am looking forward to our next
get-together.
ALBANY OUTREACH
Caroline Clarke-Smith
Albany Outreach Care Coordinator
I hope you have all had a great
break over Christmas and are ready
for another busy year.
We have good news on the facility
to be built here in Albany. A builder
has been chosen, so it will not be
long before we see things start
happening on the block. Some
Members living nearby have been
driving past, so I am sure we will get
a running commentary of what is
happening. For Members who have
been down here for many years, it
is all very exciting to see it actually
start to be built.
Suzanne and Melissa have been
kept busy with Physio exercise
groups, Hydro and one on one
sessions with Members. Yoga will
be back this year – another activity
to keep your muscles stretched and
your mind focused.
Guest speakers will be back on our
monthly plan, so keep an eye out
for those. If you have a suggestion
of anyone we can add to our list,
please let us know. Our subjects are
diverse, so get your ideas in.
BUNBURY OUTREACH
Suzi Barker
Bunbury Resource Coordinator
A warm welcome to everyone
settling back into 2020. Sail Into
Life has recently appointed a new
Coordinator for their new programs,
and we are all very much looking
forward to getting back on the
water. We’re hoping that by then
the weather will be kind to us and
not be too hot or choppy out on
the water, so we can enjoy the fresh
sea air.
Since opening in the new year, we
have enjoyed word quizzes and brain
teasers, and celebrated Valentine’s
Day with a very ‘chocolatey’ raffle
on 12 February. All three raffle prizes
were won by the men on the day
and we all hoped that there were
a few lucky ladies on 14 February
(if the chocolates made it home!).
Members and staff are really looking
to activities resuming soon. We are
planning to organise guest speakers
and need some suggestions for
interesting/relevant topics for group
discussions. All suggestions are
welcome as we all want this to be
informative and enjoyable.
We also hope to plan a picnic outing
to a nice park or garden somewhere
local, where we can all enjoy
some relaxing scenery and good
company. We will also recommence
our monthly light lunch options for
Members who wish to extend their
Outreach mornings at the Hub.
Late January, we had the opportunity
of meeting up with the other MSWA
Outreach Coordinators in Perth for
some training. It was a great day
and a wonderful opportunity to get
together to brainstorm ideas on
how we can improve our Outreach
program even further.
BEECHBORO OUTREACH
Chrystal Ruthven
Beechboro Outreach Coordinator
Firstly, I would like to take this
opportunity to introduce myself.
My name is Chrystal and I am
the Outreach coordinator at the
Beechboro Lodge. I have thoroughly
enjoyed getting to know all of our
Members and reconnecting with
others that I was lucky enough to
have already met previously as a
Care Support Worker.
When we returned to Outreach in
January, we started with our very
own ‘Bucket List for 2020’, where
each Member could have their say in
what they would like to do this year.
24

ACCOMMODATION & OUTREACH
We had a lot of suggestions, from
entertainment and guest speakers,
to outings at the Perth Zoo, local
parks, plus art and craft ideas. When
activities resume, there will be more
than enough to keep us busy and
out of trouble!
We had a BBQ for Australia Day in
true Aussie style, an Oscars mini
sweep and, for Valentine’s Day, we
cut out bookmarks and decorated
love heart cookies that Brenda was
lovely enough to bake fresh for us.
We had some great designs.
We have also been going back to
our youth with our hand-print art.
As many members as possible from
our Eastside and Northside groups
have contributed their hand-prints
or name to put on our canvas. We
now have a very colourful piece of
art and it’s almost ready to be put
on the wall for display.
If you have any suggestions or come
across any activities that you think
our members will enjoy, please feel
free to contact me.
ROCKINGHAM OUTREACH
Peta McCormack-Luckins
Rockingham Outreach Coordinator
Welcome back to all Members and
staff for 2020.
We started off January with our
own Outreach open tennis match;
the Members were very competitive
and it was a fun day for all. The
Members celebrated Australia Day
with Aussie Quizzes, we had meat
pies for lunch, and everyone had a
great day.
Outreach welcomes Carmen, our
new Care Support Worker, who will
be working on Tuesdays and Fridays.
I had a chance to meet the other
Outreach Coordinators; we had
some training with Damien Hill,
then all went out to lunch with
Nicola Washington. It was lovely to
meet the other Coordinators from
the Outreach groups.
We will keep you posted about our
antics from Rockingham Outreach
in the next Bulletin. Watch
this space.
WILSON OUTREACH
Zuraini Hussain
Wilson Outreach Coordinator
We had a nice and easy start to the
year at Wilson Outreach. As the
weather got hotter, our Toshiba
air conditioning was working
really hard to keep our Members
comfortable, while they enjoyed
celebrating several themed events
such as Chinese New Year, Australia
Day and Valentine’s Day. Each event
celebrated was followed by arts and
crafts activities, quizzes, games and
of course food!
With support from our brilliant chef
(Justine Webb) on each themed
event, our Members had a chance
to taste delicious Chinese cuisine
for Chinese New Year, BBQ lunch
and Vegemite scrolls for Australia
Day and a special morning tea with
chocolate fondue for Valentine’s Day.
On the last week of January before
school started, we had a few
students from Rossmoyne Senior
High School come to entertain our
Members. They serenaded us with
beautiful singing, a cello duo and
violin. The Members really savoured
the performance and hope that
they can come again in the next
school holidays.
2019 CANNING SHOW
In 2019, we had a significant
increase of participants from
MSWA in the Canning Show
compared to last year. We had 20
exhibitors and nearly 40 art pieces
were entered including mosaics,
macramé, drawing and painting,
toys and dolls, rock painting and
miscellaneous crafts (pictured)
I would like to congratulate Greg
Manook for his bright, colourful,
pastel drawing that won first prize
and earned a champion title in the
Painting and Drawing category.
Here are the MSWA winners:
Category: Painting Oil or Acrylic
Nick Papadimitriou 1st prize
Antonio Villamagna 2nd prize
Joan Bedford 3rd prize
Category: Mixed Media
Essie Clinton
1st prize
Category: Miscellaneous Craft
Sheilah Hayfield 2nd prize
Rebecca Pitt
3rd prize
Category: Mosaic
Lyndee Aspey
3rd prize
Category: Craft Challenges
Lynn Hoonhout 1st prize
Category: Macramé
Susan Finlay
Michelle Hall
2nd prize
3rd prize
Category: Dressed Dolls
Lynn Hoonhout 1st prize
A big thank you to our lovely
volunteer, Judy Badger, who has
been sharing her valuable time
with us every Thursday, helping to
run our art/drawing sessions. Her
knowledge and talents are really
appreciated.
I would like to express our gratitude
and appreciation to Lynn Hoonhout
who was in charge of the paperwork
and the safe transportation for our
exhibits to the show and back to
Wilson Outreach. Thank you, Lynn.
Last but definitely not least, I would
like to thank and congratulate
all Outreach Members who
participated in the Canning Show.
I am extremely proud of all of you
and hope for more exhibits this year.
The compilation of the paintings
and mosaics that were completed
by our Members have been used to
produce our first MSWA Calendar
2020. The demand was so great,
that it has sold out quicker than
anticipated. For those of you who
missed out on our calendar last
year, I have good news, as we will be
producing 2021 calendars by the end
of this year. Please watch out for this.
The other event to look out for is our
exhibition at Melville City Council,
but the date is to be advised.
To all MSWA Members out there,
when it’s business-as-usual once
again, please come and join our
Outreach activities, explore your
creativity and attempt new skills,
working with whatever physical
abilities you have, in a relaxed and
accepting environment.
25

ACCOMMODATION & OUTREACH
HAMILTON HILL SUPPORTED
ACCOMMODATION NEWS
Our Hamilton Hill supported accommodation will be 10 years old this year! Over the last
couple of years, we have been progressively renovating the premises, keeping them fresh
and modern, with new floor coverings throughout, shutters and new curtains.
This year we had planned a modest
kitchen renovation but now, thanks
to the very generous donations
from several attendees at the 2019
MSWA Dinner Auction, we will have
a very modern, large and functional
kitchen with a top of the range
fit out!
The residents are really looking
forward to having the functions
catered for in their new kitchen,
as are our cooks, as they all love to
entertain. At Hamilton Hill, we are
well-known for our special events,
especially Christmas!
Wait until you see the end result in
the next Bulletin!
JAYNE O’SULLIVAN
MANAGER HAMILTON HILL
TREENDALE GARDENS NEWS
Treendale has been enjoying some lovely weather these past few months and residents and
staff alike have taken advantage of this. The strawberries we are growing in our respite garden
are going well thanks to John Mills’ input, whilst the vegetable garden in Accommodation
continues to thrive thanks to TLC from Belinda our cook, and some of our residents and care
support workers; it’s a real team effort here.
The introduction of morning and
afternoon recreation activities in
the last 6 months has been very
successful, with our residents and
respite guests all taking advantage
of the games and crafts organised
by Angela and Susie. Recently some
of our talented guests were involved
in making posters to celebrate
Australia Day, which we then had
put up in the communal area.
We recently had a ’Thank the Fireys
Day‘ event at Treendale Gardens.
All the residents and staff really
enjoyed it.
We invited staff from all the local
fire stations to attend a lunch to
thank them for their vital service to
the community.
We do have vacancies in both our
wonderful Respite and Family Holiday
Unit facilities here at Treendale
Gardens and are more than happy to
take your enquiries and bookings.
Please contact us Monday to
Friday between 9.00am and
4.00pm on 9725 9994 (Respite) or
9725 9209 (Accommodation) or
email treendale@mswa.org.au. We
would love to hear from you!
PAULA KENNEDY
COORDINATOR SUPPORTED
ACCOMMODATION TREENDALE
26

BUTLER ACCOMMODATION NEWS
Well, Butler celebrated a magical Christmas, although it seems long ago now.
We celebrated firstly with a fantastic
magician who really had some
great tricks literally up his sleeve.
He engaged with the residents,
families and staff as he weaved his
magic. It was really entertaining!
The Christmas decorations were
amazing thanks to Kate’s mum, and
the lunchtime spread and raffles
went down really well!
It is hard to believe that Butler
has turned one already, the first
residents took up their units on
January 15, 2019!
Butler really is a beautiful facility
and the units all have that
homely feel for the residents.
It’s great to see family and friends
dropping in regularly, as well as
for special events they all enjoy
throughout the year.
SUE SHAPLAND
GENERAL MANAGER
STRATEGIC SUPPORTS
AND RESIDENTIAL OPTIONS
Please note: our respite facilities at Margaret Doody House and
Treendale Gardens are temporarily closed due to COVID-19 restrictions.
WOULD YOU
LIKE TO RECEIVE
THE BULLETIN
ONLINE?
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
and let us know your current email address,
or to update your contact details.
27

VOLUNTEERING
VOLUNTEER UPDATE
Members and Volunteers Christmas
Party 2019: Endera Padmanathan,
Bee Lean Kim, Mary Cross,
Swee Yong Fong and Maria Mades.
Hello again, and welcome to the first Bulletin for 2020. I like to think of this as the ’Big Bash
Issue’. All diehard cricket fans will know what I am talking about.
For those who don’t, 20/20 is the
fast paced cricket matches that are
over in half a day. The idea is to bash
as many balls as far as you can in 20
overs, hence the name ‘Big Bash’.
And of course, January and February
is definitely cricket season. On the
other side of the coin, and by the
time you are reading through this
Bulletin, Footy season will be upon
us. It is amazing how quickly the
seasons come and go. Sometimes it
feels like the years are flicking over
like the pages of this Bulletin.
Firstly, belated Happy New Year
to you all! Between Christmas
and January is always a blur, with
departments shutting down, staff,
volunteers and Members going
away and trying to hide from the
heat. Come February though,
everything is back in full swing and
it is Go! Go! Go!
A new year always brings new
beginnings, and this is true when
it comes to new volunteers wishing
to be part of our wonderful MSWA
team. This is one of the busiest
times of the year for recruiting, as
many people seek a change for
many reasons, and luckily for us,
this includes volunteering. People
may choose to volunteer because
they have recently retired; have
a loved one or have themselves
been diagnosed with MS; have
started studying and are looking for
experience and new skills; and those
who have completed their studies
and are looking for experience to
get into the workforce. No matter
what the reason you have chosen
to become a new volunteer with
MSWA, we are truly appreciative of
what you can bring to us in the way
of experience, skill, knowledge and
personal flair. So, I send to all our
newbies a very heartfelt welcome.
To those who continue with us year
after year, welcome back and may
the new year bring you just as much
joy as the last!
Since we last spoke, we had our
amazing Members and Volunteers
Christmas Party. This event always
takes quite some planning and I
can report it went off without any
hitches. Thank you again to QBE
volunteers for assisting with set
up, serving and pack up. To all the
numerous staff that helped behind
the scenes in the months leading
up to the day and on the day to
make it all happen, thank you
for your support. As we all know,
these things don’t just happen. I
can’t thank you all enough and am
already looking forward to this year’s
celebration. My outfit – or, as my
daughter calls it, my Outfit Of The
Day (OOTT) – was a wonderful sleigh
hanging around my waist and an
elf hat with piggy tails on my head
with jingling elf boots. As always, I
was very busy dancing and waving
my ribbon around entertaining,
or possibly annoying, many. The
food was great, the entertainment
exceptional and Santa amazing as
always. I trust you all enjoyed it as
much as I did.
If you know of someone wanting to
volunteer, please encourage them
to call me on 9365 4843 or email
volunteer.coordinator@mswa.org.
au and we can discuss current
opportunities available.
Once again, thank you for your time,
it is truly valued and appreciated. I
look forward to catching up with
you throughout the year; my door
is always open, and as always, I am
happy to have a chat, even if it is just
to say g’day.
Take care and bye for now.
DAWN BURKE
VOLUNTEER COORDINATOR
28

FROM THE EVENTS TEAM
Welcome to 2020! It’s been a busy start to the year here in the Events Team.
We kicked off this quarter with
our MSWA Albany Ride, which
saw the event break records with
participants and fundraising.
Due to current social distancing
advice, we’ve made the decision to
postpone regular events, such as
Step Up, but we really look forward
to bringing these MSWA favourites
to you again soon.
When we do, we’ll need new and
past volunteers to come and join our
team, so do get in touch to express
your interest and we’ll let you know
when it’s time for the fun to start!
If you would like to get involved,
please give me a call on 6454 3116 or
email events@mswa.org.au for any
further information.
I hope to see you at an event soon.
TRISH WATSON
COMMUNITY EVENTS AND
FUNDRAISING COORDINATOR
Volunteer, Ann Wallington,
directing participants at
the Albany Ride.
MSWA ALBANY RIDE 2020
Well done to everyone who participated in this fabulous event.
29

EMPOWERED TO LIVE WELL
Rebekah Marche’s life has been filled with ups and downs since being diagnosed with
multiple sclerosis (MS) 15 years ago, but her positivity, vigilant care of her health, and support
from her family and MSWA has given her strength to enjoy every day.
“MSWA has been a lifeline for me,”
Rebekah said.
“They have been there for me every
step of the way.
“The support is phenomenal, and I
can’t stress enough that reaching
out to them is one of the best things
to do if you are diagnosed with a
neurological condition.”
Rebekah, now 57, was an aspiring
actor, attending Western Australian
Academy of Performing Arts in
the mid-80s. Looking back on this
time, she realises something was
not right.
“I was always injuring myself. I’d say
this was the beginning of my MS.”
Rebekah developed a persistent
headache and her vision started
to blur. She visited a chiropractor
who told her to see a doctor. A
neurologist at Royal Perth Hospital
began tests.
“I was told it could be a brain
tumour, so when I was diagnosed
with progressive MS, I was actually
happy!”
But then her symptoms worsened.
“Everything went haywire – my
sense of taste disappeared, and
parts of my body went numb. But
thankfully, steroids stopped these
symptoms immediately.”
Rebekah’s neurologist recommended
she contact MSWA straight away,
which she did.
“I accessed everything they had
to offer, and it made the most
amazing difference.”
An MSWA nurse taught her how
to inject her medication and
she attended speech therapy,
counselling, sound therapy and
mindfulness at MSWA Wilson
Services Centre.
“Group counselling sessions
particularly, gave me such
confidence talking to others and I
was able to learn from others’ lived
experiences.”
When her children were young,
Rebekah regularly attended the
MSWA camps and now, she enjoys
them on her own.
“I love the camps – they were
invaluable when my kids were little
as they gave them a good grasp
of what it means to have MS. I still
go now that they’ve grown up as it
gives me a break and a chance to
be around people who understand
what it’s like to have the condition.
“You may not see the other
attendees for a year, but it doesn’t
matter. You don’t have to explain
anything to them. Listening to
other people’s situations puts yours
into perspective.”
Rebekah is unable to do many of
the activities she used to do before
her diagnosis. She had to leave
her work and has modified her
hobby of making cake decorations
into creating porcelain roses, in
keeping with her home and garden
which are filled with beautifully
scented roses.
Rebekah Marche and MSWA
Physiotherapist, James Beckett.
She can no longer drive and
experiences sensory overload,
memory issues and weakness in
her legs.
“Some days, it’s such an effort to get
from one spot to the next so I might
need a wheelchair or a walker, it just
depends on the day.”
The next step is for Rebekah to work
with MSWA to help her to apply for
an NDIS plan.
“It’s taken all this time to accept
that I have MS, but by looking after
myself and with support from my
family, friends and MSWA, I feel
empowered to live a fabulous life.”
To find out more about
MSWA’s services and support,
call us on 9365 4888 or visit
mswa.org.au/support-services
30

HAVE YOUR SAY – BE PART OF OUR
FEEDBACK COMMUNITY
As a valued Member or Client, your opinion is important for our organisation to continue to
meet your needs and provide you with outstanding services and support.
Please opt in or out of the
Feedback Community here:
https://bit.ly/mswa-feedback
We would love to be able to connect
with you from time to time to
gain your feedback on how we
do things, what matters to you,
and how you live with your
neurological condition.
With our growing focus on
research, our local researchers
also sometimes need to talk to our
Members and Clients and seek
feedback to help them with their
important work.
This feedback is usually obtained
by online survey or phone survey.
We sometimes also run face to
face focus groups, which we may
invite you to attend after you have
engaged with us about a topic via
email or phone.
If you are you happy to be part of our
feedback community, or you would
like to opt out of being contacted,
please visit the web address above
and we will record your preference.
If relevant, could you please also
take a moment to update the
contact details we have for you?
You can do it via the link
above or you can contact us at
customerservice@mswa.org.au.
We thank you in advance for your
support of the work we do at MSWA.
31

WHATEVER YOUR NEURO,
WHATEVER YOUR NEEDS,
WE ARE READY.
MSWA.ORG.AU