Bulletin Magazine Bunuru / Second Summer 24

Client art shines at the MSWA art exhibition,
with thousands of visitors from near and
far appreciating the showcase at the Mega
Home Lottery Grand Prize Home in Marmion.
Bulletin
Inside
YOUR MSWA MAGAZINE
BUNURU | SECOND SUMMER 2024
mswa.org.au

Welcome to the Bunuru 2024
edition of Bulletin.
WILSON CENTRE
29 Parkhill Way
9365 4888
Contact Us
If you would like to comment on anything you read in
this Bulletin, please email bulletin@mswa.org.au
For general feedback or complaints, please contact
feedback@mswa.org.au
Bunuru is the hottest time of the year, with hot easterly winds
and very little rain. Traditionally, this is a great time to spend by
Perth’s many bodies of water – the coast, rivers and estuaries.
During Bunuru, the white flowering gums are in full bloom –
look out for the ghost gums, marri and jarrah trees.
Editorial Working Group
Nicola Washington, Tony Millar, Emily Ace and
Nicolette Murphy.
Contributors
Geoff Hutchinson, Carol Chong, Dajana Tesevic,
Vanishree Chetti, Denise Vogels, James Beckett,
Tracey Hockey, Misty Reinkowsky and Crystal Chan.
Client Engagement Department
Our experienced teams will provide you with
personalised support throughout your service journey
with MSWA. From helping you to access funding, to
working with you to get the most from your selected
services, our trained staff are here to help.
For more information, please contact 9365 4888.
Our services include:
• Counselling, Peer Support and Health Education
• Community Support & In-home Care
• Dietetics
• Occupational Therapy
• Outreach
• Physiotherapy
• Social Welfare
• Speech Pathology
• Nursing
• Support Coordination
Nursing Support
Our Neurological Liaison Nurses are usually the first
point of contact after the neurologist’s diagnosis.
Community Nurse: 9365 4888
Monday to Friday (8.00am - 4.00pm)
Outreach at MSWA
If you live in Perth, Rockingham, Bunbury or Albany and
are interested in a trial to experience the Outreach
community, get in touch via outreach@mswa.org.au
Employment Support
The MSWA Employment Support Service is the only
specialist employment service for people living with
multiple sclerosis and other neurological conditions in
Western Australia. Our team can help you to stay
in your current job or find employment in the open
labour market.
Please call: 1300 865 209
See all our supports and services at mswa.org.au
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Email us at marketing@mswa.org.au to sign up.
PHOTO: Dylan Alcock
Acknowledgement of Country
In the spirit of reconciliation, MSWA acknowledges the
Traditional Custodians of the many lands and language
groups of Western Australia, and their connections to
land, sea and community. We pay our respect to their
Elders past and present, and extend that respect to all
Aboriginal and Torres Strait Islander peoples today.
2 3

From our CEO
It feels too late to say Happy New
Year but given this is our First
Bulletin of 2024 it is appropriate.
For those who celebrate Chinese
New Year, wishing you Gong Xi Fa
Cai also, as we welcome the Year
of the Dragon.
It is also the Noongar season of
Bunuru which is the second summer
and the season bringing heat
and little rain. We have definitely
experienced this with an unusual
number of extremely hot days,
all of which affect everyone, but
particularly those with MS and other
neurological conditions. Hopefully
as we head into April, it will cool
down and we will see more rain. I was
looking at our Noongar calendar in
the office and it says it’s a time for
long days fishing by the river.
Inherent in that is community.
This is something we have been
reflecting on and discussing with
our Client and community co-design
committee. How do we recapture
that sense of community that
defined the MS Society in those
early years? This is something we
look forward to discussing with you
in this period, getting your views on
and expanding our efforts.
Aligned with this is our commitment
to co-design. Our co-design
committee is now well established,
and whilst we have a way to go
to truly capture the essence and
benefits of co-design, we have made
very good progress. Using that as
a foundation, we hope to now move
forward to working with this core
group to leverage the ideas and
input of our wider advisory group
and our full community.
Having recently spent a couple of
hours with one of the breakfast
groups our Clients have formed,
I was humbled yet again by how
much you can learn from people
who live with neurological conditions
day in and day out, if you just stop,
listen and truly appreciate their
perspective. Thank you to those
of you who invited me and were so
open, kind and constructive.
Our goal with co-design is to truly
leverage the impact in a way that
addresses the needs of both our
Clients and community. I look
forward to seeing this progress in
the next six months and welcome all
and any ideas that come out of it.
In this period, we are also looking
forward to engaging closely with
our peak body, MS Australia, and
the State and Federal governments
to enact the recommendations
from the Royal Commission and
the NDIS review. In essence, we do
think the NDIS review heard the real
problems and agree largely with the
recommendations. However, as they
say, the devil is always in the detail.
It is this detail in timing and
allocation of supports between
State and Federal governments
that we are most focused on. We
agree with the sentiment of personcentred
care and capacity-based
funding, but how that is done and
when is really critical.
I know the respective governments
are also very keen to do this on a
co-design basis and that means if
you want to have a say, you should
be able to. We will keep you posted
on the opportunity to do so as we
hear more.
It was also a privilege to start this
year with MSWA's inaugural art
exhibition, hosted at the Mega Home
Lottery Grand Prize Home.
The depth of talent within our Client
community never ceases to amaze
us, so we were extremely proud to
share your art with thousands of
members of the public, so they could
appreciate your creativity, too.
It was a great joy to meet some of
the artists during the home opens -
I even managed to match some of
the work on display! I look forward
to meeting even more of you when
the exhibition continues at Wilson
Outreach in April.
In January, I was completely blown
away by the generosity of one of
our late Clients, Ross Kennedy, who
made a substantial gift in his will for
the benefit of MSWA and our Clients.
It was a privilege to meet his
brother, Bruce, who worked
tirelessly to ensure his brothers
wishes were fulfilled.
As an organisation, it is our sole
purpose to support people living
with neurological conditions, and to
learn our team made such a positive
impact on Ross' life filled us with
great pride. Thank you, from the
bottom of our hearts.
Melanie Kiely CEO, Bruce Kennedy and Senior Events & Partnership
Officer Danna Guzman.
On a last note, we are aware that you
might want to know more about our
teams, our people and our leaders.
In this edition, we profile our
Deputy Chair Liam Roche. Our team
have interviewed Liam and I am sure
you, like me, will enjoy reading
his interview.
Melanie Kiely
MSWA CEO
4 5

Member & Client Services
Welcome to the Bunuru / Second
Summer edition of our Member &
Client Services Bulletin.
As featured on our front page,
a number of our Clients had the
opportunity to showcase their
incredible creative skills at the
MSWA art exhibition in March.
Take a look at page 30 to see some
of these incredible pieces and book
your place at the People’s Choice
Award festivities on 21 May.
NDIS News
The final report of the Independent
Review into the NDIS was published
in December, listing four key
review areas.
• A unified system of support for
people with disability
• Markets and support systems
which empower people with
disability
• Stewardship of the unified
ecosystem
• A five-year transition
A more detailed update is provided
by Geoff Hutchinson on pages 12
and 13, and the QR code below
provides an easy read of the review.
It is important to note that these are
recommendations and are still to be
accepted by government, along with
clarity on what will form the five year
transition plan and what will be the
priority. We look forward to seeing
the next steps and a clear action
plan for what is agreed.
What’s coming up
Tysabri Subcutaneous Injection
Our nursing team will now be
accepting referrals to administer
the Tysabri Subcutaneous Injection
since it has been approved on the
PBS. We will be initially using our
Wilson service centre as the base
site for Clients referred for their fourweekly
injection. This will also give
Clients the opportunity to engage
and connect with others while
visiting our Wilson Centre.
If you would like more information,
you can call our nurse support line
to speak to one of our nurses on
9365 4888 or 1300 097 989.
You can also read more about
this on page 8.
Meet our nominees
The finalists and winners will be announced on 18 May at the WA Disability Support Awards Gala Dinner, and we are
keeping our fingers crossed for our team.
Randall Rooney
Innovation in Service Delivery
Melissa Coombs
Emerging Leader
Employment
Services team
Excellence in Rights Promotion
NDS Disability awards
I am proud to announce we have
a number of our team members
nominated for the WA Disability
Support Awards 2024.
As always, your feedback is important to us, so if you have anything you
would like to share please contact us at feedback@mswa.org.au.
Nicki Washington
Chief Client Operations Officer
6 7

Nursing
MSWA plays key role in providing
improved access to Tysabri®
As of 1 February 2024, the
federal government approved
subcutaneous natalizumab
(Tysabri®) for individuals with
relapsing remitting MS (RRMS)
under the Pharmaceutical Benefits
Scheme (PBS).
Before this, Tysabri® was only
available as a monthly intravenous
infusion administered in a hospital or
infusion clinic.
As part of the implementation of
the Tysabri® subcutaneous
injection, MSWA will play a key role
in setting up access to this service,
as other clinical settings such
as hospitals and GP clinics put in
place processes to receive
patients ongoing.
MSWA Research Coordinator Julia
Tran sat down with MSWA Clinical
and Residential Services Manager
Vanishree Chetti and MSWA
Neurological Liaison Nurse Rochelle
Brown to chat about the new form
of Tysabri®, the role MSWA will play
in accessing this treatment option
and what that means for improving
access to people with RRMS.
What does the new form of
Tysabri® mean for people
with MS?
Vanishree Chetti: The main
advantage is shorter service
time. This announcement means
individuals with RRMS will now have
access to a nurse to administer the
Tysabri® injection at our MSWA sites.
The entire process is shortened
from being a couple of hours long
to just a one-hour service. We will
be complete pre- and post-checks
before and after the administration.
Rochelle Brown: Clients are
required to have two subcutaneous
(under the skin) injections, each
containing 150mg. This is because
it would be uncomfortable for
the Client to be administered 2ml
subcutaneously as a single dose.
(Tysabri infusion is 300mg).
Where can a Client
access Tysabri®?
Vanishree Chetti: MSWA nurses
have been trained and educated
on the new administration of the
injection. If we receive a referral,
Clients will be requested to initially
come to the MSWA Wilson services
centre, but we will also have trained
nurses at the Butler and Bunbury
services centres.
Where a Client goes for the
administration of Tysabri depends
on their neurologist’s referral – this
could be the GP, hospital or MSWA
service centre.
What is the cost of accessing
Tysabri® injections at MSWA
Rochelle Brown: There will be no
cost for administration of Tysabri®.
MSWA provides help to individuals
living with MS which includes
assistance with the administrations
of various immunotherapies.
Vanishree Chetti: MSWA has always
supported individuals living with
MS, which includes assistance with
the administration of the various
Immunotherapies.
What is the most important
information someone should
know about Tysabri®?
Rochelle Brown: To guarantee the
integrity of the medication, cold
chain must be maintained from the
point of manufacturing to the
point of administration. This is why
your MSWA nurse will ask you to
collect your Tysabri® injections
from the pharmacy on your
way to your appointment at an
MSWA service centre.
Vanishree Chetti: It is important that
individuals complete pre-checks
(blood work) prior to coming in and
know their results.
As this is a new treatment form of
Tysbari, MSWA has ensured the
appropriate clinical governance is
in place, including robust training of
our nursing staff, to ensure the safe
delivery of this treatment.
If you are new to the drug, then
the first few injections will be
administered in the hospital to
ensure there are no adverse
reactions. Individuals can then
be referred to an MSWA nurse
for ongoing administration at
an MSWA site.
If after those couple of doses there
are no adverse reactions, individuals
will transition into the community
where MSWA Nurses will then
continue the administration of the
injections at an MSWA site. We will
be providing an interim solution
until additional health services are
on board too.
It is a good initiative, and it is how
MSWA can help the MS community.
This interview has been edited
for clarity. This transcript is
for informational purposes
only and is not a substitute for
professional medical advice
or treatment. Personalised
consultations are essential for
optimal care so it is important
for individuals with MS to
discuss with their medical
team to identify the most
suitable treatment for their
specific situation.
Register your
interest in
PLATYPUS
In November 2023, MSWA in partnership with MS Australia announced
the first-ever adaptive clinical trial seeking to reverse the neurological
damage caused by primary progressive multiple sclerosis (PPMS).
Known as PLATYPUS, the $4 million trial is due to commence in 2024.
The multi-arm, multi-stage design will test two repurposed drugs
simultaneously, providing timely results about whether the treatments
are working.
The clinical trial process requires significant applications to ethics,
governance and regulatory authorities for approval. When these
approvals are met, study sites in Australia may start recruiting people
living with MS into the trial.
If you are interested in participating, please register your interest
via the MS Australia website (link below) to be notified when
recruitment commences.
www.msaustralia.org.au/platypus/
8 9

Research
MS Australia funds WA research
Get involved in neuro research
MS Australia announced funding for 17 cutting-edge projects as part of their latest $4.5m grant round, made possible
through support from MSWA and MS Member Organisations across the nation.
This includes three West Australian researchers and their projects to commence in 2024:
Dr Stephanie Trend of The
University of Western Australia,
who aims to determine what is
triggering immune reactions in
people with MS. Robust evidence
shows that a specific type of
immune cell, known as B cells,
are important to cause attacks
of MS. This project involves using
laboratory-made proteins that
mimic natural antibodies, to identify
and study the targets for B cells,
including parts of Epstein-Barr
Virus (EBV), which is known to be
important in the development of
MS. Identifying the specific targets
recognised by B cells in MS may help
to diagnose the disease, identify
those at higher risk of MS, and
develop targeted therapies to be
used in the future.
Dr Mark Hackett of Curtin
University, who is investigating a
compound called 'cuprizone' which
has been found to induce damage to
the brain that is similar to MS.
This is due to its ability to bind
strongly to copper, preventing it
from reaching the brain where it is
needed for energy production and
healthy brain function.
Congratulations
to all the 2024 funding
recipients, we look
forward to seeing
your progress!
You can view the full details
of MS Australia's 2024
Research Grant
Announcement
through this
QR code.
Dr Belinda Kaskow of Murdoch
University, for her work in
unravelling underrepresented
immune cell complexity in MS.
This project will investigate killer
immunoglobulin-like receptors (KIR),
which are found on certain immune
cells and help control immune
responses. It will study which genes
are present in an individual, when
those genes are expressed, and
what cell types express them. This
project will compare this between
people living with MS and people
living without MS to understand the
differences in the KIR repertoire
in MS. Understanding how KIRs
impacts the balance of the immune
system in MS will lead to better, more
targeted immunotherapies for MS in
the future.
MS Genetics Study
The Menzies Institute for Medical
Research needs your help to
investigate the Epstein Barr virus
(EBV) strain that may play a crucial
role in developing multiple sclerosis
(MS). Volunteers are needed for an
Australia-wide study which aims
to identify specific markers in the
blood associated with onset and
progression of MS.
To volunteer, or find out more
information, contact Postdoctoral
Research Fellow Chhavi Asthana,
on (03) 6226 4226 or via Chhavi.
Asthana@utas.edu.au
MS and food preparation
Aged Care Survey
The Perron institute is collaborating
with the Department of Health
to better understand people’s
experiences, particularly those
with neurological conditions, with
palliative and end-of-life care in
Residential Aged Care Facilities
(RACFs) across WA.
If you had a family member or friend
die in an aged care facility in WA
between 2021 – 2024, Perron would
appreciate your perspective
to help improve
end-of-live services.
Access the survey
through the QR code.
Be first to access InforMS online portal
Do you have MS and someone who assists with your food preparation?
Curtin University researchers would like to speak to people with MS, and those who assist
with their food preparation, about their views on diet and what could help them eat well.
Other than contributing to research which could improve the lives of people like you living
with MS, you and your carer will receive a supermarket gift voucher in thanks for your time.
For more information, contact Dr Rebecca Russell on
9266 3160 or email MSDietProject@curtin.edu.au
Finding Your Stride
Do you have MS and regularly run
or jog?
A team of researchers at James
Cook University are looking for
volunteers to record their running
habits over a four-week period.
The team is interested to know if
there is any relationship between
your running habits and your MS
signs and symptoms.
If you have multiple sclerosis,
and are interested in
participating, please
scan the QR code.
A new online MS health portal called InforMS is being developed by MS Australia in collaboration with
researchers from the Menzies Institute of Medical Research and Monash University, people living with MS,
HealthCare Software, and other partners.
InforMS is a ‘one stop shop’ to view and track your MS health information with your care team, record your own
health outcomes over time, manage your health through setting goals, link evidence-based MS education and
see options to participate in MS research and clinical trials.
All Australian MS Longitudinal Study participants will be invited to try it as part of a research study in
mid-2024, so get involved if you have not yet already at https://www.msaustralia.org.au/amsls
10
11

Client Engagement
New NDIS to bring major
changes… potentially.
One of the most frightening words
in the English language
is ‘potential’.
‘Potential’ has the potential to be
great, the potential to be special,
the potential to be life-altering
or regrettably, the potential to be
terrible. Everything is on the table
when people insert ‘potential’ into a
sentence. But what makes this word
so scary is that we often must wait
to find out if something reaches its
potential or not.
Take the 329-page report that was
the final deliverable of the recent
National Disability Insurance
Scheme (NDIS) Review. Potentially,
the recommendations within the
report provide a five-year roadmap
for a scheme that gets back to
basics and becomes client-centred,
with costs under control to ensure a
viable scheme into the future.
While the recommendations have
the potential, we still don’t know
which ones will be accepted, what
legislation will get through and
what the final product will look like.
Nevertheless, we now know more
about the NDIS vision than we did
previously, so what are the major
outcomes potentially impacting
your NDIS?
The NDIS can’t do it
alone.
One of the biggest ideas to come
out of the review was that the NDIS
can’t do it alone and called on both
State and Federal Governments
to invest in ‘foundational supports’
to assist people with disability
outside the NDIS. This has been a
critical concern for many years, with
93 per cent of disability funding
going into the NDIS, despite only a
small proportion of the 4.4 million
people in Australia with a disability
supported by the scheme. As the
report authors state “you can’t fix
the NDIS without fixing everything
around it”, so the introduction of
foundational supports would see
mainstream services (like health,
mental health and education)
become more accessible as part
of a connected system. This would
allow access to some services
outside the NDIS structure more
efficiently and sustainably. The
'NDIS or bust' approach has been
a pebble in the shoe of the scheme
since its inception, slowing things
down and making the journey quite
painful. More support outside the
scheme is a great thing.
This ‘connected system’ concept
leads to further recommendations
around the way mainstream services
interact with the NDIS. This includes
allowing NDIS participants who
turn 65 to receive funding support
through Aged Care and the NDIS
at the same time, and improved
access to aids and equipment.
MSWA has been an active advocate
for the needs of those outside the
scheme for some time, so ensuring
everyone is supported would be
a big outcome. Research by the
Melbourne Disability Institute found
that non-NDIS programs spend the
equivalent of $33 a year on services
for those with disability outside the
Scheme. That must change.
Scheme navigation
Another significant change
within the report is the
proposed replacement of
Support Coordination, Local
Area Coordination (LAC) and
Psychosocial Recovery Coaching
(PRC) services with a concept
called Navigators. Navigators
would be responsible for assisting
both NDIS participants and those
outside the scheme to connect
with mainstream services,
navigate the NDIS application
process, and connect to services.
Unlike the existing system, where
a set number of hours is provided,
Navigators would support everyone
from diagnosis onward, coming in
and out of people's lives as their
needs require, to allow for flexible
support. Furthermore, Navigators
would operate independently
from service providers, ensuring
nationally consistent governance,
service information, monitoring,
and training. Everyone is getting
their own NDIS sherpas it seems.
This is big, and I can see the
potential, as having one person on
hand to help you navigate your way
around all the different elements as
your needs change would be helpful.
However, the Local Area Coordinator
experience has not been great,
and this is a significant role with
significant scope for someone
who may not understand individual
conditions or situations, which
may lead to uneven participant
experiences.
Overall, this is a good concept that will
help improve access to support and
lessen confusion for everyone. The
report also signals the potential end of
Plan Managers thanks to a new digital
payments system, but this seems
to be a long-term change – a relief
for the 1000+ active plan manager
companies across Australia.
Budget management
A recommendation I did enjoy was
that plan allocations should be
set at the whole plan level, rather
than line-by-line. This means that
budget-setting would focus on
a person’s support needs and
provide a flexible budget (based on
assessments), allowing services
to go where they provide the
most benefit. This all leads to the
recommendation that the NDIS
adopt a trust-based approach to how
people use their budgets. While this
sounds excellent, a concern about
this new flexible approach is the
introduction of ‘Needs Assessors’
who are responsible for setting these
wonderful new budgets. Minister
Shorten was quick to clarify Needs
Assessors are completely different
from the ‘Independent Assessors’
floated a couple of years ago, but the
job description sounds pretty similar
to me. Still, more flexibility is a good
thing no matter how you look at it.
The report also suggests that the
National Disability Insurance Agency
(NDIA) delegate pricing oversight to
the Department of Social Services
and the Independent Health
and Aged Care Pricing Authority
(IHACPA). Furthermore, the Review
recommended that a new pricing
and payment structure moves
away from a uniform approach to
better account for varying costs,
such as supporting individuals with
higher levels of complexity, regional
differences, staff training and other
associated indirect labour expenses.
This is significant as the current onesize-fits-all
pricing approach fails to
allow providers to adapt to individual
needs as they change, bringing a lot
of promise.
Improved governance
One change that may not impact
your plan on a day-to-day basis, but
will have an impact on the quality
of services, is the introduction of
risk-proportionate regulation. For
a variety of reasons, many NDIS
providers are choosing to remain
unregistered, which means that
they are not held to the same quality
and safeguarding standards as
registered providers, such as MSWA.
For a scheme designed to provide
funding and services to, at times,
vulnerable individuals, having a
significant portion of your providers
operating without the same
rules is cause for concern. The
proposed approach would require
all providers to be registered
and would provide mandatory
compliance across all services
provided under the scheme.
The report also recommends all
providers comply with NDIS practice
standards, which currently is not the
case. This is a win, as compliance
is a lot of work for an NDIS provider,
but it's also the only way we can
ensure the safety of all participants.
There are many, many other
suggestions across the novel-length
report, including governmentcommissioned
Specialist Disability
Accommodation (SDA), increases
in early support for children outside
of the scheme and the creation of
a new Disability Intergovernmental
Agreement (IGA) aimed at getting
governments to work together.
Overall, the report has done a
great job of looking at all aspects of
the disability sector and providing
clear suggestions that (in my
opinion) would improve things
for participants, their families,
and providers.
So, what does it
all mean?
Well, nothing for now. The
recommendations outlined in the
review are well thought out, have
obviously considered feedback
from participants and have the
potential to improve the lives of
millions of people. But for now,
all we’ve got is ‘potential’. The
next steps are equally important
in getting the Federal, State and
Territory Governments to agree to
these recommendations, have the
NDIA implement them unchanged,
find qualified people to fill these
important roles, and ensure client
outcomes remain the goal while we
do all the above. Potential can be a
killer; however, potential can also
be exciting. For the moment I am
excited by this report and the vision
of the NDIS it represents.
Geoff Hutchinson
Manager Client Engagement
12
13

MSWA News
Counselling
Susan shores up
WA's voice
A different approach
to happiness
Susan Hyde has stepped up to the plate for Western
Australia, becoming the state representative in the MS
Australia National Advocates Program.
The program aims to lift the voices of people with lived
experience and their carers, meaningfully contributing to
the peak body’s advocacy agenda.
This includes engagement with media, speaking
opportunities at public events and discussions with
members of parliament, relevant policy/decision makers
and special interest groups.
Susan’s passion for people motivated her to take up the
mantle, with a strong background in advocacy through
her work in the New Zealand Police and WA Justice
system.
“I’ve previously done this type of work for prisoners,
where my job was around reintegration, and I also did a
lot of victim support work with the police,” Susan said.
“I like people, I like working with people and I like being
able to help people – plus I’ve always had a bit of a knack
for networking.”
Diagnosed with remitting-relapsing MS in 1995, Susan
was determined to keep up her active lifestyle, running
and cycling whenever she had the opportunity.
While working as a Prison Officer in early 2016, Susan’s
symptoms worsened, and she was diagnosed with
Secondary Progressive MS. This resulted in an early
retirement in 2022, despite her best efforts to keep
her role.
Drawing on her experiences, Susan is determined to help
others through advocacy and networking, with a focus on
employment, inclusion, accessibility, and a prime goal of
raising public awareness.
“I have had MS for 30 years and I believe there is not a
huge awareness of what MS is and what it stands for,”
Susan said.
“Accessibility is a big focus for me, and this role is a
chance to get that out there, make the public aware and
break down the barriers that exist to be more accepted.”
Susan is particularly excited about the PLATYPUS trial
announced in December 2023, and showing others living
with the condition what can be achieved when you set
your mind to it.
“Many people who have silent diseases and illnesses
think that because they have got it, they can’t do things,”
she said.
“I saw this as a role that I could strive to do, and make
those people believe they can do those things, too.
“It is an exciting prospect and hopefully I do WA proud.”
Susan encouraged anyone wanting to know more about her
advocacy work to contact her at susanhyde@xtra.co.nz
or come along to the Rockingham Peer Support catch
ups she runs monthly. If you have a query that she cannot
answer, she will point you in the right direction.
If you are interested in the Peer Support Group Susan
runs, you can contact her on the above email, or join
the Facebook group Mobile Socialites Rockingham.
The group meets for lunch the last Saturday of each
month. Full details can be found on the Facebook group.
The start of the new year is always a good time
for reflection and taking stock, setting goals and
intentions; all of which can help maintain motivation
levels and fill ourselves with a renewed sense of hope
for what is to come. While this can have a positive
impact on your wellbeing, it can also be problematic
when met with a type of ‘if – then’ or ‘all or nothing’
thinking. This is what psychologists refer to as the
‘Arrival Fallacy’ – the idea that when you get to the
‘finish line’ only then you will be ‘happy’.
As easy as it is to say we shouldn’t think this way, reality
is that we all get caught up thinking along these lines.
Take a few moments and think about your own narratives
around happiness, filling in the below blanks with the
times when you have set a goal or intention for yourself
and found yourself saying the following;
I’ll be happy after I do__________________________________________.
I’ll be happy when I achieve___________________________________.
I’ll be happy when I accomplish______________________________.
With the above thinking, what happens when you don’t
achieve your goals? It is all too human to lose motivation
for our goals, especially with the days becoming hotter
and longer, many people struggle with heat related
fatigue, and sleep disturbances or fall sick. The problem
with the Arrival Fallacy is that when we don’t achieve our
goals, we beat ourselves up and end up with feelings of
unhappiness and low self-worth. We label ourselves as
‘failures’ or ‘losers’.
So how do we establish a more healthy and productive
relationship to happiness?
1. Shift your Focus
One way is to shift your focus – rather than focusing on
the end outcome/goal, we focus on the process along the
way. When we allow ourselves to think about the journey
towards our goals, it helps shift your attention away from
linking achievement to how you feel about yourself, and
instead encourages you to think about what else you
gain on the way. Below are some questions to help you
think about the journey, rather than just the outcome:
- How is this process benefiting me?
- What am I gaining?
- What makes me happy right now?
2. Focus on the Now
Gratitude: it may sound crazy but cultivating gratitude
for the things that bring us joy and improve our wellbeing
can increase our overall levels of happiness and feelings
of worthiness. Not only does it make us realise what we
already have in our lives, but it also challenges the Arrival
Fallacy that we must achieve X goal to be worthy and
worthwhile human beings. At the end of the day, you are
enough as you are.
3. Set More Goals
According to experts in the field, creating more goals that
are linked to different areas in our lives can help us shift
our energy, attention, and focus in a more balanced way.
As per Tal Ben-Shahar in the New York Times, “if you're
consistently stretching yourself, even with accessible
micro-goals, you'll be less likely to succumb to that empty
but-what-do-I-do-now feeling”. Having many goals can
encourage people to not over focus on one area of their
lives at the expense of others, creating feelings of stress
and emptiness.
When you view your levels of happiness through a more
holistic lens, you get closer to living a more satisfying and
values-connected life.
You deserve to enjoy where you are right now.
Sidrah Khan
MSWA Counsellor
14 15

Nursing
Continence matters:
Part one
Following on from our Hydration series, let’s now talk about
continence and how much it matters to your wellbeing.
What is incontinence?
Incontinence is defined as the accidental or involuntary
loss of urine and faeces and can range in severity from a
small leak to total loss of bladder or bowel control.
Incontinence isn’t life threatening, but it can have a huge
impact on a person’s physical and mental health. In some
cases, this can lead to additional issues such as low
self-esteem, social isolation, anxiety, and depression.
Common forms of urinary
incontinence:
Urge
incontinence
Stress
incontinence
Mixed
incontinence
Functional
incontinence
Nocturia
Post
micturition
incontinence
An involuntary loss of urine
associated with a sudden and strong
urgency to urinate.
Leaking of small amounts of urine
during activities such as coughing,
sneezing, laughing, walking and lifting.
A combination of both urge and
stress incontinence.
Also known as disability associated
incontinence, which occurs when
the person’s bladder and/or bowel is
working normally but they are unable
to access the toilet. This may be due
to a physical or cognitive condition.
When you have to wake up during the
night to pass urine. It is a common
problem that becomes more
common as we get older.
Known as micro-dribble, this can
occur when men lose a small amount
of urine after emptying their bladder.
Neurological conditions affecting
Urinary Incontinence
• Multiple Sclerosis.
• Parkinson’s disease.
• Dementia
• Cerebral vascular accidents
• Cerebral palsy
• Multiple system Atrophy
• Stroke
• Spina bifida
Neurogenic bladder:
What does it mean?
Neurogenic bladder is the term for what happens when
neurological (nervous system) conditions affect the
way your bladder works. There are two major types of
bladder control problems linked to neurogenic bladder.
Depending on the nerves involved and the nature of
the damage, your bladder becomes either overactive
(spastic or hyper-reflexive) or underactive (flaccid or
hypotonic).
What are the symptoms of a
Neurogenic bladder?
The most common symptom of neurogenic bladder
is being unable to control urination. Other neurogenic
bladder symptoms include, a weak or dribbling urinary
stream. frequent urination (urinating eight or more times
daily), urgency (a feeling or need to urinate immediately),
painful urination (which may mean there is a urinary tract
infection), and urinary leakage.
Neurogenic Bladder
management and treatment
Your care will depend on what is causing
your symptoms and how serious they are.
There’s no cure for neurogenic bladder,
but you can manage and control your symptoms.
If you have an overactive bladder, you may need to:
• Train your bladder. You can do this by squeezing
your pelvic floor muscles during the day or
when you need to pee (Kegel exercises).
• Hold it, if you can. Delayed voiding is when you wait
a few minutes to urinate after you feel the urge. The
goal is to extend this time to a few hours.
• Go to the toilet at scheduled times throughout the
day. You might avoid accidents if you urinate at
certain times of the day.
• Take medicine. Some medications can relax bladder
muscles and stop spasms.
• Keep a healthy weight. Extra body mass can add
pressure to your bladder.
• Change your diet. Things like caffeine, alcohol, spicy
foods, dairy, artificial sweeteners, chocolate, and
citrus fruit can irritate your system.
• Use electrical stimulation. A device under your skin
sends electricity to the nerve that controls your
bladder. These painless pulses help stop overactive
signals that tell your brain to pee.
• Get Botox if needed. Your doctor can inject this
neurotoxin into your bladder to temporarily stop it
from contracting too much. If you have problems
emptying your bladder or have urinary tract infections
often, this treatment isn't an option.
If you have an under active bladder, you may need to:
• Schedule your bathroom visits. You might need to
pee/urinate every 3 to 4 hours, even if you don’t feel
the urge. After you urinate, wait a few minutes and try
again.
• Use a catheter. This long, thin tube helps drain your
bladder. You may need to use it a few times a day. In
some cases, it may need to stay in all the time.
• Have surgery if needed. If other treatments fail, you
could need a procedure or device to help you urinate.
Where to find more information:
Continence Foundation of Australia provides
free, confidential information and advice
about incontinence and can also direct you
to local services.
1800 33 00 66 (Monday – Friday, 8am to 8pm AEST)
www.continence.org.au
Neetu Kainth & Dee Lucey
Continence Nurse Specialists
16 17

Social Welfare
Decision-making capacity
Advance Health Directive
Enduring Guardian with authority
People make countless decisions every day. They
can be deeply personal and are often informed by
your values, your experiences and people closest to
you. If you have the ability to make reasoned decisions
for yourself about your personal, financial and legal
matters, you are considered to have ‘legal capacity’.
This is a complex legal concept that varies in
different circumstances and can change over time.
Adults are presumed to have full capacity unless
shown otherwise.
It can be scary to think about losing capacity and being in
a position where you are unable to make or communicate
decisions for yourself. If you or a loved one have a
neurological condition that causes cognitive decline,
you may have already considered or experienced this
possibility. However, it is something that can happen
suddenly and unexpectedly to anyone, regardless
of disability. Although these discussions can be
understandably difficult, talking about it can help prepare
you for a future whereby a trusted individual can help
make decisions for you.
Figure 1. Summary of EPG and EPA key aspects
Who can make it/be appointed?
EPG
EPGs & EPAs
While you have full capacity, you can appoint your
preferred substitute decision-makers and prepare legal
documents that record your preferences for personal,
financial and legal matters. These documents are
known as an Enduring Power of Guardianship (EPG) and
an Enduring Power of Attorney (EPA). They specify the
decisions your substitute decision-maker can make and
the circumstances in which they can act.
The State Administrative Tribunal (SAT) also plays an
important part in this process. Its role is to bring the EPA
into effect where necessary by making a declaration that
the donor does not have legal capacity. The SAT can also
make orders revoking or varying the terms of an EPA,
or recognising a power of attorney created in another
jurisdiction as an EPA in WA.
Once someone has lost their capacity to make decisions
and can no longer create an EPA, the SAT can also hear
an application for an administration order.
Anyone 18+ with full legal capacity
EPA
Advance Health Directives
An Advance Health Directive (AHD) is a legal document that
records the treatment and care you consent to in specific
circumstances. It will only be used by health professionals
if you are seriously unwell or injured and are unable to make
or communicate decisions about your care.
Your AHD sits at the top of what is known as the “hierarchy
of treatment decision-makers”. If you lose capacity but don’t
have an AHD, or a situation arises that isn’t covered by your
AHD, health professionals will go down the hierarchy to find
the first available adult who is willing to make the treatment
decision. If your preferred substitute decision-maker is
further down the hierarchy, you may want to consider
making an EPG and appointing them as your enduring
guardian to make them the next point of contact.
What next?
Guardian with authority
Spouse or de facto partner
Adult child
Parent
Sibling
Primary unpaid caregiver
Other person with close personal
relationship
Figure 2. Hierarchy of Treatment Decision-Makers
We know this topic can feel rightfully overwhelming, but speaking with your trusted family, friends and/or health
professionals can help you gather your thoughts on making an AHD, EPG or EPA to ensure you choose your decisionmaker.
Given their importance in communicating your life choices and preferences if you are ever unable to do so
yourself, they require time and careful consideration to prepare. Please see below for details on the free advisory
services and resources (including step-by-step guides and the relevant forms) available for anyone ready to start the
process or wanting more information.
Candice Preston
Support Coordinator
What types of decisions can
the substitute decision-maker
make?
Personal, lifestyle, medical, and/or
legal proceedings
Financial and
property matters
Figure 3. Resources for making an AHD, EPG or EPA
Online Resources
Advisory Services
When does it come into effect?
Only when you lose legal capacity
– can be temporary or situation/
decision-specific
Immediately OR when SAT
determines you have lost legal
capacity
AHD
https://www.healthywa.wa.gov.au/AdvanceHealthDirectives
DOH WA Advance Care
Planning Information Line
Ph: (08) 9222 2300
ACP@health.wa.gov.au
How is capacity determined?
GP or medical specialist capacity
assessment OR a SAT hearing (if
uncertain)
Only through
a SAT hearing
EPG
EPA
www.wa.gov.au/organisation/department-of-justice/office-of-thepublic-advocate/enduring-power-of-guardianship
www.wa.gov.au/service/justice/civil-law/enduring-power-of-attorney
Office of the Public
Advocate
Ph: 1300 858 455
opa@justice.wa.gov.au
18 19

Introducing…
Life not limits
You’ve more than likely seen our Thrill Seeker Chris, or remember our Social Butterfly
Susan, but we know everyone has a story to tell, so we want to hear yours!
Jump online or scan the QR code to submit your Life not limits story for your
chance to be featured in Bulletin, on our website, or maybe in our next ad.
Name: Susan Finlay
Identifier: Social Butterfly
Living with Spinocerebellar Ataxia
“I do Hydro on Mondays, I love the
warm pool! I find it a bit easier than
physio. I also do walking laps with my
social support and my friends – we
go to the local pool and do that too."
Susan, known fondly as a
social butterfly, finds her joy in
connections, creativity and art.
Visiting friends throughout the week,
at the local pool, shopping centre or
community programs.
Name: Chris McEncroe
Identifier: Thrill Seeker
Living with Gullain-Barré Syndrome
Chris, a self-proclaimed thrill seeker, found his passion
for kart racing after being diagnosed with Guillain-Barré
Syndrome, where nerve sheath loss overnight impacts
the peripheral nervous system. He recalled waking up one
morning, not being able to move.
Chris modified his kart himself with some assistance from
his carers to be hand controlled. "Funnily enough, karting
has boosted my upper-body strength, serving as rehab and
promoting mental wellbeing."
20
21

Client Contributions
Letting my voice be heard
MSWA Client Lyndal Hunt shares her personal framework which has helped
her navigate a 28-year journey with MS.
On a Stormy Sea
When the waves of the sea became bigger
And the wind started to blow at storm strength,
The boat didn’t sail anymore
And it rocked in the waves
Bobbing up and down in the water….
Gert Strydom, 2014
At the age of 25, my diagnosis with multiple sclerosis (MS)
in 1996 rocked me from my moorings. All that I had hoped
for in my life had been dealt a cruel health blow. Since my
diagnosis, I have experienced, and continue to experience,
life in a way that I could not have imagined possible.
V - Values and beliefs
After receiving the diagnosis, I was confronted with
not only my world having changed, but the image I had
of myself had also been altered. I have learnt to take
the time to reflect on who I am at my core, as reflection
provides the opportunity to be mindful of my values. I
believe values are simply a set of individual beliefs that
motivate a person to act one way or another, guiding
behaviour like an inner compass.
Personally, I believe that MS is a disease of the body,
that over the spirit it has neither jurisdiction nor rite of
passage. I also believe that, just as it takes a crew to sail
and maintain a vessel, it is important to have a circle of
trusted carers and medical professionals and to know
the different roles they each play. For me, travelling
through life with a neurological condition has naturally
meant my neurologist is a necessary part of my crew.
Equally, I believe it is important to be prepared to let go of
beliefs that no longer hold true and change my crew to
meet my need accordingly.
• What are my core values and beliefs?
• How have/are my needs changed/changing?
• What are the different services medical
professionals provide?
• Who do I need on my crew?
Navigating my way through unchartered waters, as
the captain of a questionable vessel travelling towards
an unknown destination, my world had undeniably and
irrevocably changed.
My experiences have helped generate a simple
framework, to help me hear the sound of my own voice
when navigating through the systems and institutions that
have become a part of my world. The V.O.I.C.E framework
is a simple tool that continues to help me keep my journey
with MS in perspective, while living a more present,
integrated and satisfying life.
O - Open minded. Observant. Objective.
I have found it important to live in the present and be open
minded and objective when it comes to my physical care.
From personal experience, symptoms of neurological
conditions can mirror other things, especially when being
viewed from an "able bodied" perspective. It is important
therefore to be open-minded, observant and objective
(rather than close-minded, blinkered and subjective),
asking questions both to reach and to understand any
information received (neurological sensations, physical
symptoms, diagnoses) and guidance given.
It was through this mindset that I became aware
of the specifics of my changing needs and change
my crew accordingly. Members of my current crew
include my primary carer (daily ongoing care and
support), GP (scripts and referrals), medical specialists
(neurologist, PMC – Baclofen pump maintenance); MSWA
(physiotherapy, nurses – SPC changes, counselling),
and government (TUSS, pension, NDIS). Once again,
by remaining open minded, observant, and objective,
I was able to make pragmatic decisions when
outsourcing different activities to compensate for
your physical limitations.
• Am I being realistic or am I seeing things from an
"able-bodied" perspective?
• Am I willing to listen to and to hear other people,
consider new ideas, suggestions, and opinions?
• Am I speaking with and listening to the right people?
I – Integration
From personal experience, this has been both the most
important and challenging stage to accommodate.
Multiple sclerosis is an intensely private disease. The
precise impact it will have on your life journey is as
unique as you are. Integration is therefore an important
port to dock at for reflection.
Reviewing my journey so far, paying particular attention
to any changes to my sense of self, my motivations and
decisions brought about through being open minded,
observant and objective. I reflect on my experiences and
learn from any lessons. Giving myself permission to be
sick, to have special needs, to require, request, receive,
and accept help. Integration is about living in the present,
enjoying the treasure in the journey over simply reaching
any destination. It is forever a dynamic process, changing
and evolving over time.
• I am mindful of what informs my inner narrative
(as this is the inner compass).
• The core of who I am and how I see the world and
my place in it may need recalibrating. For example,
what no longer fits? Which beliefs no longer hold
true to me?
C – Context
Over time, I have discovered it is important to know
and understand where I am in the expanse of services.
Take a proactive interest in what a specific service
has established and can provide. Multiple sclerosis is
a multifaceted disease which requires support across
many disciplines. When the only tool you have is a
hammer, every problem can look like a nail. For me it
was important that I seek information from more than
one source and to be curious. A good starting point for
neurological conditions can be MSWA.
• Do I know who is on my support radar and why?
• Do I know exactly what specific services are
available and what they offer?
• Be prepared to ask questions to understand how
the services best fit my needs.
E – Encounter
The great thing about any relationship is that it is only
actually alive in the encounter. This is no different when
travelling with MS, through the systems and institutions
that are now a part of your world. I have personally
found some of these encounters to be quite confronting,
especially when receiving information from different
professionals and service providers. I have found that
whatever part is played in the relationship, it’s important
that both parties are speaking the same language and
that you both feel understood. For me it was important to
assess that we were both navigating towards the same
destination, so find a crew that is, then set sail. It’s okay to
take time, look around and find the right people.
• What institutions exist and want to support me?
• Who do/don't I trust and why?
• Who can I comfortably work with?
• Be prepared to engage
As my MS journey progressed, the validity of my personal
reality within the systems and institutions that are now
part of my world were tested due to various reasons.
The V.O.I.C.E framework helps guide me to keep my
journey with MS in perspective, so I don’t lose sight of
myself in the process. I developed the framework to
empower myself, as a unique individual, to serve as a
reminder that I do indeed have a voice.
It is important not to think about myself in terms of what I
have lost, rather – I am the person I am today because of
the journey I am travelling. In finding my VOICE, it brought
me peace and strength. The winds will always blow, and
the waves crash but there will always be a way forward in
the present, living an integrated and satisfying life.
I let my V.O.I.C.E be heard.
Lyndal Hunt
MSWA Client
22 23

Client Contributions
The Survivors’ Coffee Group
“You are just allowed
to be in your moment,
for as long as you need
and know that you are
supported.”
We catch up regularly in our
favourite café in Joondalup. Well,
not regularly as in weekly but, you
know, every few months or so
when we felt we had something to
talk about. There are four of us: we
call ourselves survivors, because
each one of us had battled several
illnesses but what we have in
common is multiple sclerosis (MS).
We initially met at an MS exercise
group which eventually folded but
we had so much in common by that
time and knew so much about what
each other was going through, that
we wanted to keep meeting.
I’m one of the four, Rosy – and
there’s Hillary, Jane, and Lynette.
We’re all a similar age, in our sixties,
and we swap stories of what we’ve
been through and what we’re going
through. Nothing very exciting really
because we’re not ageing all that
well, so no fun stuff for us, but we all
have our memories of things that
we’ve done, and love to share them
(sometimes repeatedly) and all have
a good laugh.
I think the best thing about this
group is the way we cling to each
other when we meet and when we
say our goodbyes.
These hugs are just amazing and so
affirming. They make you feel like you
really belong, which is something
MS does not normally do. People are
frightened when they hear you have
it and they don’t know what to say or
what to ask, especially families, so
there’s not much discussion when
others are trying to brush it away.
But this group is amazing. No one
fears asking the tough questions or
to see you cry when you are at your
lowest. We’ve all been there and its
comforting to know that no one is
going to try to step in and solve it for
you as some family members might
try to do. You are just allowed to be
in your moment, for as long as you
need and know that you
are supported.
Our conversations are varied and
many, and always include lots of
laughter. We talk about which movies
we’ve seen, where we’ve been and
how we are.
Conversations about movies are
hilarious and often can go like this -
“You know that movie? With that
gorgeous blond guy and with that
girl – you know, the funny one!”
So, we check Google, and we say –
“Where did you go to see it? What
day was it on? Was it this? Was it
that? Ahh yes THAT movie!”
This sort of conversation, which
might seem crazy to anyone else, is
normal for us and has us in stitches
because we all do it!
Many of us have battled for years
with unknown and undiagnosed
symptoms. Take me for example.
I was in and out of hospital for
nearly twenty years with a variety of
illnesses such as a perceived stroke,
labyrinthitis, muscle spasms, etc.
In 2010 I was told I had had a minor
stroke. At that time my kids were
concerned they did not know enough
about my doctors, my illnesses, my
scripts etc. that they asked me to
note it all down so they would be able
to provide information to doctors
when I couldn’t. In 2018 I had optic
neuritis and on examination, MRIs
etc, I was told that I had MS and,
because I had noted down all that I
had gone through (thanks kids), the
neurologist was able to say I had had
it for years.
MS is such a misunderstood
disease and often comes with
other autoimmune diseases. I have
several other autoimmune issues,
and so do my friends. It’s so hard
trying to determine which disease is
causing what. And it’s startling that
several of my MS friends have had
breast cancer. Not saying that it’s
caused by MS or has anything to do
with it, but how unlucky is that?
Back to our survivors’ coffee group
– we all treat ourselves to a muffin or
a slice, and, no, we don’t feel guilty.
Where once upon a time we would
be watching our weight, we now
acknowledge that life is for living and
enjoying, though we do (sometimes)
admit to extra exercise during the
week…when we can.
Exercise is such a strange thing
when you have MS. You know that
it will help ease the stress on your
muscles, but you get so utterly
tired. It is called fatigue, and oh my
gosh, is it debilitating. I don’t think I
ever really understood what fatigue
was before, but I do now. It grabs
your muscles and your brain and
turns everything inside out and still
expects you to perform your normal
duties – but you can’t. Brain fog takes
over and if you thought you knew
what you were doing you are proved
wrong, in many (often embarrassing)
ways and on many occasions.
But you need to provide a normal
presentation. After all, you don’t want
people to pity you or to ask you too
many questions. Why should you
have to continually validate yourself
to others? I was once told to ‘mix
more water with it’ because I tripped.
And yes, I had a drink in my hand
but I hadn’t touched it yet, so I was a
tad offended, especially as it was a
friend of my daughter who I thought
knew what I was going through. But I
think many MS people face that kind
of criticism. Apparently, we have a
walk which from behind looks like we
are drunk (I’ll drink to that!).
I often hold onto walls and sway
around because my balance is out
or because I am feeling unsteady on
my feet. But why do people have to
judge,
and why do you feel you have to
explain yourself?
Our survivors’ coffee group allows
us to be normal. It enables us to
be strong and to assert ourselves
when necessary because, together,
we are a force to behold. We love
life, we love each other, and we love
surviving in our own individual ways.
Rhonda Adamsam
MSWA Client
(Names of people have been
changed in this story)
24 25

Our People
A multifaceted experience
of multiple sclerosis
MSWA Client Kim Koeman recently sat down with us to
share her diagnosis journey, unfortunate predicaments
she has experienced and her inspiring outlook on life.
Read on to find out how the right employment support
and a zest for life continues to make this incredible
woman excited for the future against all the odds.
“Leigh was just an absolute wealth of knowledge and
took the time to explain the NDIS process and organise
appropriate work support through them for me,” she said.
“Following my diagnosis, my brain was not in a good
space, and I didn’t understand any of it.
For a prolonged period of time, Kim had several
symptoms that appeared in her daily life. She was
affected by narcolepsy where she would just suddenly
fall asleep, had irritable pins and needles, and couldn’t
stand the heat. She would fall and trip over nothing, had
terrible memory and sadly, constant pain.
“I was so lost; Leigh just dove in, saw right through me,
patiently took a bit of control for me and helped me
navigate everything top to bottom.”
Kim’s major symptoms saw her strength and balance
plummet, her eyesight deteriorate and a strong aversion
to heat was developed.
Multiple doctors brushed it off and explained it away as
mental health issues, laziness or some sort of ploy she
was pulling to attempt ceasing work. Ironically, work has
always been a major motivator for Kim.
“Unfortunately, getting this kind of response from
medical professionals is a normal experience for a lot of
us,” she said.
“I was working for quite a while through all these
symptoms, not knowing what was really happening to me
and not getting the right support I needed.
“Suddenly, major symptoms occurred over a week, and I
had to undergo an MRI which led to my multiple sclerosis
diagnosis in 2019.
“I felt quite vindicated when I was finally diagnosed. Along
with the MS diagnosis, I was also diagnosed with ADHD
and functional neurological disorder (FND).”
After her long-awaited diagnosis, Kim joined MS support
groups on Facebook where one of the members
mentioned and recommended MSWA’s Employment
Support Services (ESS) Manager Leigh McCaffrey and
how his team could offer great support integrated with
work.
Kim decided to heed this advice and proceeded to
contact Leigh which subsequently opened up multiple
support avenues for her.
“Suddenly, it felt like everything was collapsing. I wanted
to continue working for Chorus, but I couldn’t be out on
the road or in people’s homes anymore with the heat
and I couldn’t do personal care anymore with the loss of
strength,” she said.
Fortunately for Kim, both community service provider
Chorus and MSWA’s ESS team jumped in to help her
transition to an office-based role.
Describing her employer’s and Leigh’s support as
hugely compassionate, Kim leaned into the new role
and became an active participant in the office. She was
also soon able to partly work from home with the right
supports provided by the ESS team through the NDIS.
“Honestly, if I hadn’t met Leigh and received the support
from the ESS team, I don’t know what I would have done.
They have been integral in ensuring I can continue
to do what I enjoy while appropriately managing my
conditions,” Kim said.
While she received effective support from MSWA and
her employer, Kim unfortunately experienced challenging
predicaments while going about her daily life.
In one instance while at a major Perth event, she went past
a long line-up in the restroom to use the disabled facility. A
young staff member then proceeded to call her out publicly
as someone who did not need to use the accessible toilet.
Understandably frustrated but still patient, Kim responded
to the staff member that disability was multifaceted and
did not only look like a person in a wheelchair.
“Strangers that barely know me are the ones who’ll come
up and question me about why I’m there or what I’m doing
as if I need to justify myself to them,” Kim said.
“My only message to these people is – you don’t always
know what someone’s going through.
“Disability doesn’t always show itself. It’s not always
presented with someone in a wheelchair. It could
look like a smile on someone’s face. It could look like
a well-dressed human being, someone going to work
or looking after their children or going to school.
It could be hidden, and you’d have no idea.”
With a strong belief that people should assume the best
about others not the worst, Kim also had some words of
wisdom to share about keeping spirits up while managing
a disability.
“After I was diagnosed, I started reading theories –
people say go on this diet, read this book, do this, don’t do
that,” she said.
“But honestly, the best thing is to keep active and
continue to have a purpose in your life and a sense of
self-worth, whether it’s through work or volunteering.
“Having a connection with other people in the community
gives you a profound sense of purpose, and when you’re
focused on giving back to someone else, you have less
anger and negative energy to spend on yourself and your
condition.
“Of course, I understand the fatigue that comes with
keeping busy, but when you’re doing something for
someone, it takes that self-ruination and transforms it
into the joy of giving to others. That's how I feel about
working.
“Whatever it is, I still have gratitude. It could have been so
much worse. I don’t sit around and be miserable, I grasp
life. I still want to work and travel and have many plans for
my future.”
Thank you for sharing your story with us, Kim.
You are an inspiration!
26 27

Client Our People Contributions
“Love conquers all”
The remarkable
story of John and
Pauline Campbell.
For most, one diagnosis in a lifetime can,
understandably, be more than enough for a
person to handle.
But for the remarkable 84-year-old Pauline, two powerful
forces have helped her to take on multiple sclerosis, a
stroke and breast cancer in her stride: faith and love.
It was 1985 when Pauline first noticed symptoms, working
as a sister across surgeries in Applecross and Yangebup.
“I didn’t realise what was wrong, because I wasn’t walking
straight,” Pauline said.
Multiple tests and five years on, Pauline originally
received an incorrect diagnosis of motor neurone
disease. After a second opinion, it was determined
Pauline had MS.
“Now I’m left with weakness in my right leg, and I don’t feel
that good in my right arm. Nothing terrible, I can stand up,
but I don’t have any balance whatsoever,” Pauline said.
“It hasn’t affected me terribly; I can do most things. I
can empty the washing machine and put it in the dryer. I
shouldn’t, but I can – you find ways around to do things.
“But I have strong faith, and it’s been very helpful for me
on my journey.”
Her husband of 32 years, John, is also a huge pillar of
support in her life. He credits his 20-year career as a
chef in the Navy as the perfect training to take good care
of Pauline.
“He’s a wonderful man, he does everything I can’t do,”
Pauline said. “When we got married, he knew I had MS
but despite that, he married me.”
“Love conquers all,” John professed.
Their love story is quite the tale, with John having
answered Pauline’s personal ad in the local newspaper
in 1985.
“Pauline had written ‘lonely nurse seeking tall, dark
handsome guy’ so I wrote back and was one of 70 other
replies,” John remembers. “I thankfully made it into a little
group of positives in Pauline’s list.”
Pauline took the opportunity of her youngest of three
daughters being away on school camp to meet her top
four bachelors.
“I met a guy on Saturday afternoon, but I didn’t like him at
all. All he talked about was himself!” Pauline recalls.
“On Saturday night, I arranged to meet a gentleman and
he had a carnation in his lapel. We were supposed to
meet in Hay St mall, and when I got there, I saw this little
old grey headed man and I thought ‘oh he’s too old for
me!’ So, I turned around and went home. I felt awful, but I
did it anyway.
“On Sunday, I met this other man. He was a nice man
actually; he was a saxophonist.
“But on Sunday night, I met John and I liked him. We
walked all around Fremantle looking for a coffee shop
and nothing was open! I had mentioned that I went
dancing, and where I used to go to dance, and he picked
up on it and was waiting for me there when I got there!
“And from then on... the rest is history.”
“Now we’ve been married 32 years,” John said proudly.
A survivor in every sense of the word, Pauline hasn’t let
her health battles stop her from travelling the world with
John by her side.
“Three years ago, Pauline was 80 and she had never seen
the Great Barrier Reef,” John explained.
“It was fantastic how people helped Pauline in the
wheelchair while we were there. This young man took
charge of Pauline and said ‘leave it all up to me’.
“We’ve actually been in a couple cruises, all in the
wheelchair, they are very good and accessible.”
As well as far north Queensland, the couple have
travelled to Penang and New Zealand – where a threeweek
holiday doubled to six thanks to a lucky windfall.
“Typical Pauline said ‘I think I’ll go get some AMP shares’,”
John said.
“She ended up with about a thousand, from a
hundred in, so we decided to extend our holiday to
six weeks!”
While they have been doing less travel recently as
Pauline’s specialist “five-star” equipment is more
difficult to bring with them, the couple enjoy their
quiet life in the beautiful coastal town of Busselton
and have even picked up some new hobbies.
“We go twice a week for art classes. I never knew I
could draw,” Pauline said.
“She only started that at 80, but you never know your
hidden talents!” John chimed in proudly. “I started playing
the ukulele at 80.”
When we met with Pauline and John, the couple were
excited to be receiving a new electric wheelchair through
Pauline’s HCP plan. By complete coincidence, the couple
received the exciting news that it was on-board for delivery –
after months of waiting – just as our interview wrapped up.
“She’s resisted getting into a wheelchair all this time, because
she wanted to get exercise,” John explained.
“But now she’s 83, let’s face it she needs it. But she will still do
her upper body exercises and we are really looking forward to it.
“The MSWA Occupational Therapist came in to help teach us
how to transition from a wheelchair to the shower or the bed
and she did all that fantastically.”
Having been put through so many challenges throughout her
life, we asked Pauline what her advice would be for others to
remain as positive and active as she is.
“My advice to others with MS – keep up a good diet. Don’t eat
anything you don’t need,” she said wisely. “I don’t each much sugar,
and I eat all the right foods. Fruit and vegetables. Not much meat.”
“But I also have a strong will and determination.”
Of course, John backs her up in this self-assessment; “yes, she has a
very strong, dogged personality,” he beams.
28 29

Dietetics
Social Connections
Egg-cellent choices for a
healthier Easter
Everything Outreach!
With Easter upon us, it's time to embrace the festivities while keeping our wellbeing in mind.
Here are some evidence-based tips from a Dietitian for a healthful and joyful Easter:
Balancing Easter treats.
Let's be real – Easter without a bit of
chocolate or treats is like a beach
day without sunshine, it's a bit dull. It's
absolutely fine to embrace the joy of
Easter treats in moderation, especially
when opting for quality dark chocolate. Dark chocolate
not only satisfies your sweet tooth but also brings
along antioxidants with potential heart-healthy benefits.
Consider individually wrapped chocolates for better
portion control and designate a specific time of day for
your chocolate fix, like in the afternoon or after dinner.
Protein power.
Foods rich in protein help us feel satisfied
and fuller for longer, while also supporting
our muscle, nerve & immune function.
Take eggs, for instance – they are a
nutrition powerhouse and a fantastic
protein source, while being versatile and easy to prepare.
Whether you choose boiled eggs, frittatas, or tasty
omelettes, you're not only treating your taste buds
but also providing your body with essential nutrients.
Additionally, diversifying your protein sources can be
beneficial. Including meat-free options like seafood, eggs,
nuts, seeds, and plant-based proteins such as legumes
(chickpeas, beans, and lentils) ensures a well-rounded
diet, promoting overall health and wellbeing.
Nutrient-rich Easter meals.
Our Aussie autumn offers a vibrant array
of fresh produce. Load up on colourful
fruits and veggies – these nutrient-dense
foods not only contribute to overall health,
supporting muscle and nerve function,
but also add a burst of flavour to your
Easter spread.
Stay hydrated.
With the warm autumn weather in
Australia, staying hydrated is crucial and
can help with managing fatigue. Opt for
water as your primary beverage and
limit sugary drinks and alcohol. If you're
feeling fancy, herbal teas are a delightful and hydrating
choice too. Try carrying a reusable water bottle with you
throughout the day to make it easy to stay hydrated; add
lemon, cucumber, or mint to your water for a refreshing
twist or set reminders on your phone to take regular sips.
Mindful eating magic.
Practice mindfulness during meals by
savouring each bite, paying attention
to hunger and fullness cues. Avoid
distractions such as screens and engage
in meaningful conversations with loved ones.
Mindful eating fosters a better connection
with your body and promotes satisfaction.
Active Easter celebrations.
Include physical activity in your Easter
celebrations. Plan activities that suit your
abilities and preferences, whether it's a
gentle walk, seated exercises, or enjoying
some outdoor games – staying active is a
fun way to bond and support your wellbeing.
As you gear up for Easter, remember it's about
relishing good food, good company, and good vibes.
Treat yourself, stay active, and make choices that
make you feel your best.
Mineh Burn
MSWA Dietitian
Wheelchair Day at Beechboro
Wheelchair Day at Beechboro was a blast! We honored International
Wheelchair Day with some seriously competitive (yet super friendly)
seated sport tournaments at Outreach Beechboro. Stuart nailed our
version of Beer Pong (minus the beer, of course!) after a few practice
shots, taking the lead. Meanwhile, Tyrone and Miles were in a tight race
playing knock-the-bucket-off-its-perch, and Andrew and John showed off
their bean bag splash game skills! Round two next month? Bring it on!
Wilson Valentine’s Day
sweeter than chocolate
Our Outreach attendees had a
blast making Valentine's sweets,
but let's be real, most of them
didn't make it to their intended
recipients. Who can resist a
delicious treat made with love?
DIY Skills
Sugar and spice and all things
nice! Outreach Rockingham were
treated to a wonderful incursion
by Bunnings Rockingham, where
Clients used their DIY skills to
make spice racks. Next week
we are going to enjoy using our
creative skills to decorate them!
Wilson OpShop Café
Wilson OpShop Café kicked off the year with
a bang! Huge thanks to the kitchen dynamos
Justine Webb and Swee-Chin Chu, who whipped
up a storm (and cream) to go with some yummy
scones. Come hang out with us and taste the
magic yourself!
Drop us an email at outreach@mswa.org.au to
find out when our café is open for business.
Happy 70th Sally!
For the past 16 amazing years,
Sally and her husband Bryan have
graced our doors, and Sally's
positive spirit, warm smile, and
kind heart have touched the
Rockingham Outreach team.
Sending warmest wishes to Sally
for a wonderful birthday!
30 31

Social Connections
Accommodation adventures
Farewell, Bruce!
After 10 dedicated years, Care Support Worker Bruce
Hale is headed for retirement and will be truly missed by
the residents of Hamilton Hill.
In 2023, Bruce was nominated by staff and Clients at the
National Disability Services Awards for Excellence in
Disability Support Work. You can read all about it on page
20 of our last edition of Bulletin.
Thank you for your amazing work Bruce, you will be truly
missed.
Sunshine and smiles
Fern River Postie
“Fantastic, I have always wanted to be a postie!” Jenny exclaimed when asked
about becoming the Fern River postie.
Jenny is a Fern River resident who loves spending time with people, doing
something that has meaning and sharing her infectious smile. Daily, Jenny
with the assistance from staff, collects her postie basket and name tag,
collects the mail from the mailboxes and cheerfully delivers it to every unit.
Residents enjoy their daily catch ups with Jenny and are thankful for the visitor.
By creating purpose, Jenny now wakes up knowing she has a responsibility to
do every day and feels that she is contributing to the Fern River community.
We love your work Jenny!
Margaret Doody’s brand-new look!
Clients have been amazed by the summer
transformation of Margaret Doody House, which now
boasts a modern kitchen and refreshed landscaping
throughout.
Respite Manager Nelly Higginson said the changes
made it so much easier for staff and Clients to access
and enjoy – and was good to look at too!
“It all looks so much more modern and every Client who
has visited since we re-opened has loved it – there have
been so many positive comments,” she said.
“The Facilities Team has done a great job as usual; they
even picked the most amazing splash back which we all
love!
“But not only have we had the kitchen done, we’ve also
been working on the courtyard with some replanting, with
the aim of creating a nicer environment for Clients to go
out and enjoy – somewhere that looks lovely and relaxing,
but also smells wonderful.”
The entrance wasn’t forgotten in the upgrades, sowing
the seeds for big future plans.
“The idea is that when you come in in a year or so, visitors
will come in through a hedged driveway to provide a
grand entrance for our visitors,” she said.
These are the latest in a string of refurbishments, which
started with a flooring upgrade two years ago and
continued with a laundry and bathroom refresh last year.
“We had a lady who hadn’t visited in 12 months, and she
was just blown away when she came in,” Nelly said.
“Everything we do is to ensure the Client experience at
respite leaves them feeling really good about their stay
– it is so important to all of us and is what we strive to
achieve.
“It’s an amazing energy in the house, with everyone
making connections and new friends. Every day there is
laughing and joking, and when they leave they exchange
numbers to stay in touch.
“For me, this is why I do what I do.”
Fern River residents are now embracing the opportunity to get some
sunshine on their skin and socialise with other residents. With the support
of some occasionally loud music and a whole lot of singing and dancing, the
once quiet afternoons are now filled with laughter and engagement. At Fern
River we are lucky enough to have easy access to the walking paths along the
Canning River giving beautiful scenery and access to nature and wildlife. If
this sounds like a lifestyle you would enjoy, we have room for one more! Get in
touch with your Client Liaison Coordinator or email fernriver@mswa.org.au to
enquire about our Fern River High-Support Accommodation.
Jacqui Sheveleff
Supported Accommodation Coordinator
Are you interested in MSWA’s Accommodation or Respite services?
We would love to hear from you!
We regularly host tours of our facilities and would love to show you the amazing amenities we have to offer.
Please get in touch with our teams through the details below:
Accommodation: customerservice@mswa.org.au
Treendale Respite: treendale@mswa.org.au
Margaret Doody House (City Beach): nelly.higginson@mswa.org.au
Call us on 9365 4888 and book a pre-visit to look around and ask any questions you may have.
From there, a booking can be made, and funding secured. If you are a current MSWA Client and have
a Client Liaison Coordinator, ask them about accessing respite.
32 33

Events
Our People
Creating a connection point
MSWA art exhibition 2024
Celebrating our
Difference Makers
West Australian artists living with neurological
conditions showcased their talents to thousands of
admirers as part of MSWA’s inaugural art exhibition.
Hosted in the Mega Home Lottery Grand Prize Home
located in Marmion, the exhibition featured 25 pieces
produced by 22 artists in February and March, with
visitors in awe of the quality and diversity of the work.
Mixed media artist Hank Gidney, whose career has
spanned 35 years as a commercial artist, designer and
art director, is showing his work We got here, where is
here? as part of the exhibition, a piece which tells the
tales of two unique journeys.
“The subject is a friend of mine, who is an indigenous
artist in his own right. I came to this idea because I had
also been relatively recently diagnosed with MS, and he
had his own journey at that same time,” Hank said.
“So, I combined both elements into one narrative. It’s mixed
media because it’s a piece of photography, but it’s also
about art – illustration and painting – that was created as a
separate element and printed, so the two became synced.”
Hank was “humbled” to know his art would be seen by so
many people, and that featuring the artworks in the Mega
Home Lottery house were a great way to “connect the dots”.
“Sometimes we are defined or bookended by our
condition, sometimes that’s a visible thing and
sometimes not so," he said.
“But actually, this exhibition says something very
different. It says ‘actually, we are not’ we have these
avenues to express ourselves away from our condition,
even though it may describe our journey. I think it is really
valid and special.”
Malcolm Hicks travelled all the way from Bunbury for the
exhibition opening which features his work Combination
of Dreams which depicts a fictitious northwest WA scene,
borne of his own vivid imaginings.
Unlike Hank, Malcolm is a relative newcomer to the art
scene, who began honing his skills after his motor neurone
disease diagnosis in 2012.
Hank Gidney with his artwork.
“I found myself at home a bit more and took up painting
then,” he explained.
“When I first started, my brother gave me a picture and
said, ‘I don’t want a copy of a picture, I’ve already got the
photo, I want your impression of it’.
“So, you can’t go wrong when it’s your impression!”
Malcolm welcomed the opportunity to publicly show
his work, but also to have the chance to see the huge
variation in work on display from other artists.
Following rave reviews from visitors, the exhibition will
travel to MSWA Wilson Outreach where it can be viewed
from May 6 – 21, 8.30am – 5pm.
Votes have been flooding in for the People’s Choice
Award, which is set to close at 11.59pm on Friday 17 May –
so make sure your vote counts!
The winner will be announced at the People’s Choice
Award ceremony on Tuesday, 21 May at Wilson Outreach,
where the exhibition closing will be
celebrated with a morning tea.
To secure your place, scan the
QR code.
We were again blown away by the
outpouring of support from Clients in
nominating their MSWA Difference
Maker of the Year for 2023!
It was another difficult decision,
with Support Coordinator Talisha
Gismondi and Occupational Therapist
Sam Warne named as deserving
finalists in this important category,
with Exercise Physiologist Oliver
Guttinger announced as our winner.
Oliver said receiving the recognition
had left him in disbelief.
“Especially because it was from
the Clients, it’s very humbling to be
recognised by them and to receive
such an honour as this,” Oliver said.
Oliver credits his 13 years working
for MSWA to his amazing team, and
of course the Clients he works with.
“The Clients are an inspiration to
me,” he said.
“It's nice to be able to spend that time
week after week with people, develop
a deeper connection and see them
progressing through their lives and
sharing that journey with them.
“But I've also got to say that we've
got such an excellent team, both
in the in the Beechboro facility and
at Butler.
“Everyone's well respected, we learn
from and are supportive of one
another – that really, really makes a
difference when you can come into
work to know that everyone's got
your back and pitch in when you need
it. It makes a massive difference.”
He extended his thanks to the
Clients who nominated him and
looked forward to “continuing to
move onwards and upwards with
smiles on our faces”.
Congrats Oliver!
Here is what our Clients had to say:
“Ollie is brilliant in what he does, I always feel better after my sessions
with him, he really understands neuro conditions, and has patience,
empathy and respect, he is a huge asset to MSWA.”
“Ollie's patience and guidance in delivering both group and
personalised exercise programs ... has given me confidence in
understanding how to work through the challenges that MS presents
and achieve the best results possible from my mind and body.”
“Each week Ollie takes great care to ensure our comfort and
wellbeing as we progress through his exercise routine, with laughter,
endless encouragement and ending always with a sense of physical
accomplishment and well-being.”
You can check out all
of our winners for 2023 below:
Difference Maker Award
Oliver Guttinger,
Exercise Physiologist
Change Maker Award
Melissa Coombs,
Outreach Coordinator
Leading with Purpose Award (Team)
Rostering Team
Leading with Purpose Award
(Individual)
Chanel Rikihana,
Community Support Worker
The Chair’s Impact Award
James Beckett,
Physiotherapy Manager
Trailblazer Award
Sandra Barton,
Community Support Worker
Values Award – Accountability
Robin Braccia,
Quality, Safeguarding and Risk
Values Award – Difference
Abi Farrah,
Care Support Worker
Values Award – Listen
Donna Hogan,
Community Support Worker
Values Award – Respect
Joseph Jangi,
Maintenance/Handyman
34 35

Our People
Get to know:
Liam Roche
A final act of kindness
This brand new series will help you
get to know the MSWA team a little
better! To kick us off, we spoke with
Board Director Liam Roche.
Liam is currently our Deputy Chair,
Chair of People and Governance
and a Committee Member of
Audit, Risk and Finance. He is an
accomplished business leader with
a 40-year career in the media and
manufacturing industry.
Throughout his career, Liam has
not only left an indelible mark
on the corporate landscape but
has also become an inspiration
for his commitment to
community service.
What motivated you to join the
MSWA board?
When I retired at 58 years of age, I
wasn’t completely ready to hang up
the boots so I looked at how I could
contribute to the community. A good
friend of mine knew Bill Hassell,
MSWA Senior Vice President at the
time and he was aware that MSWA
were looking for a new director, so he
suggested they talk to me.
I also had friends and family
members living with multiple
sclerosis, MSWA had a good
reputation and was doing amazing
work in supporting people living with
MS, so I was proud to become a part
of the team and have worked hard
ever since trying to make a positive
impact in my capacity.
What is your favourite
memory / achievement as part
of the MSWA Board?
Helping to build sustainable growth
in service delivery, building new
state-of-the-art facilities, and
our significant contributions to
research over the years. Back in
2016 when I joined the Board, we
delivered 460,000 hours of service,
contributed $2.2m to research,
our Net Assets were $26.7m,
total income was $48.6m and we
achieved a surplus of $4.3m.
By 2023 we nearly doubled the
hours of service delivered to
856,050 hours, we have tripled our
contribution to research to $6m, our
Net Assets have grown to $102m,
total income has more than doubled
to $114m and our surplus was a
staggering $11m, which we will use
to empower the lives of people living
with neurological conditions. This is
sustainable growth that we can all
be enormously proud of.
When you have time off, what
would we find you doing?
When I first retired, I didn’t have any
grandkids and in the next four years
we had four under 4 years of age!
As my daughters like to say “it takes
a village to raise a child” which is
code for Grandparents helping, so
Karen and I spend lots of time with
our grandchildren, which has been
both a pleasure and a privilege.
We also love travelling and enjoy a
trip to either Europe or the United
States every year along with regular
trips to Bali and the Eastern States.
We’ve been lucky to see a lot of the
world and love exploring new places.
What is an interesting fact about
yourself people may not know?
I am a keen Bridge player and play a
couple of times a week. I’m a member
of the West Australian Bridge Club
and the Melville Bridge Club. I enjoy
the intellectual and social stimulation
and appreciate the logic, reasoning,
concentration, and partnership skills
Bridge develops.
If you could imagine one thing
for MSWA in 10 years, what
would it be?
There is currently no cure for MS,
but there has been tremendous
progress in the development of
drugs to treat the disease. I would
like to imagine a future where anyone
diagnosed with a neurological
condition could live a “life without
limits” and not worry about their
condition getting worse, thanks to
groundbreaking research and the
development of new treatments.
Liam and his wife Karen spending
time with their grandchildren.
MSWA CEO Melanie Kiely graciously accepted an
extremely generous donation at the bequest of the late
Ross Howard Kennedy in January, who sadly passed
away in March 2022.
Despite the solemn circumstances, we were heartened
to learn this decision was made by Ross in recognition of
the significant support he received from MSWA over the
several decades in which he lived with multiple sclerosis.
“He wanted to recognise that generous and sustained
support in his will,” said Ross’ brother, Bruce.
Ross Kennedy: “A delightful gentleman”
The middle child of three siblings, Ross grew up in Tuart
Hill in the 50s – then the northern edges of Perth – where
there was plenty of bushland to play around in with his
friends from the street.
Attending the local school, Ross was able to come
home for lunch every day, except for when their mum
volunteered at the school canteen and the trio were able
to enjoy special treats.
On the weekends and school holidays, Ross would spend
time swimming, crabbing and fishing at the family’s
holiday home in Mandurah.
Ross was also a talented hockey player, a gifted artist
and photographer, with a particular interest in flowers.
He was also a keen collector of model trains, cars and
trucks.
A great lover of all things English – including his wife
Shirley, The Beatles and James Bond (his car number
plate was moonraker!), Ross was a quiet man with a wry
sense of humour.
According to his family, Ross was determined to live life
and go forward in his own way. He even ordered a new
stereo system to accompany him to palliative care so he
could “go out in style”.
“MSWA is an organisation that does a lot of good, and it
is important given that they support the community, that
the community supports them.”
As well as donating an astounding $270,000, Ross’ estate
also donated equipment, including a specialist bed,
two hoists, four wheelchairs and a care alert system to
benefit other MSWA Clients.
In recognition of this generosity, we would like
to pay tribute to Ross, by sharing a small part of
his story.
Ross started a cadetship at the Land and Surveys
Department, where he worked until his retirement in 1996.
He was universally respected for his personal qualities
and his technical talents in photogrammetry and IT.
Diagnosed with MS the mid-1980s, Ross received
support from MSWA over several decades where he was
well-regarded by the staff who cared for him.
We extend our condolences to Ross’ family and cannot
understate our appreciation for his selfless gift, and to
Bruce for his substantial efforts as executor to make
this donation possible.
It is because of generosity such as this that MSWA
can continue to support West Australians living with
neurological conditions to live the life they choose.
Interested in leaving a gift in your will?
For more information, visit our website
mswa.org.au/get-involved/a-gift-in-will
36 37

News in brief
Save the date
UPCOMING EVENTS
Thursday 30 May
World MS Day
Sunday 23 June
Step Up for MSWA
WA-developed drug to protect brain after stroke
A groundbreaking WA-developed drug which aims to
reduce brain tissue damage following stroke is now being
trialed in hospitals across Australia, including Sir Charles
Gairdner and Fiona Stanley hospitals in Perth.
MSWA proudly contributed funding to Phase 1 of the drug
trial of ARG-007, which confirmed the novel drug is safe
and well tolerated in healthy volunteers.
The drug was developed through research led by
Professors Bruno Meloni and Neville Knuckey (Perron
Institute and The University of Western Australia) at
WA-based biotech company Argenica Therapeutics
and will be administered by early responders in the
Phase 2 trial.
Read more here: https://bit.ly/3Pk49hX
Portraits in time
The May 50k
Albany Swim
Ripping up the book
of life
Can art change the world? This is
the question explored in a recently
filmed short documentary featuring
Tasmanian artist and activist
Lucienne Rickard, who also bravely
shares her personal story of being
diagnosed with multiple sclerosis.
Lucienne inspires everyone she
meets and is carving out an
international profile as a devoted
advocate for protecting endangered
species.
Search ‘Ripping up the book of life’
by LOWCO Au on YouTube to watch
the inspirational film.
(Image credit: ABC News)
MSWA Volunteer takes
Australian Idol by storm!
Andrea Omanade (or Drea) is
well-known in the MSWA community
by Clients and staff as a beloved
and regular volunteer singer for
our events.
We are very proud to share that Drea
made it to the top 8 of this year’s
Australian Idol! What an incredible
achievement. Congratulations, Drea!
– we look forward to hearing all about
your journey in our next Bulletin.
In case you missed it, you can catch
Drea's incredible performances on
catch up TV via 7Plus.
She also keeps her fans updated
on Facebook (Search Drea) and
Instagram (@dreaomusic).
(Image credit: Channel 7)
‘Every time it’s hot, my
world goes blurry’
MSWA Client Wildaliz De Jesus
recently wrote two insightful articles
published on the ABC News’ website
outlining the impact of heatwaves on
people with a disability.
In the first article, Wildaliz writes
from her own perspective as a
woman living with multiple sclerosis
and how heat has snatched
moments from her.
In the second article, she
spoke to experts like MSWA
Occupational Therapist Sarah
Coutinho to understand why heat
disproportionately affects people
with disability and measures for
more inclusive communities.
To read the articles visit:
https://ab.co/3vjymXk (article 1) and
https://ab.co/3vjbQ0N (article 2)
27 March - 30 April 2024
10am - 2pm
Bond Store Gallery,
Old Courthouse Complex on
Queen Street, Busselton
Did you know that MSWA Client
Liaison Coordinator Kirsty Wyatt is
a talented illustrator? In fact, Kirsty
has an entire exhibition of her own
over the Easter holidays!
The exhibition consists of 12
paintings and sketches celebrating
the lives and contributions of the
older generation of Busselton.
This exhibition will not only
showcase their visual portraits,
but will also share the rich tapestry
of their life experiences, fostering
intergenerational understanding and
respect within the community.
Submit your article to us
Wednesday 1 – Friday 31 May 2024
Australia-wide
This May, smash your fitness goals
as you help raise funds to support
life-changing research into the
prevention, treatment and finding a
cure for multiple sclerosis.
Challenge yourself to move 50 KM
(The OG), 100 KM (Double Up) or 150
KM (Triple Threat), in your own time
and at your own pace.
Take part on your own, as a team, or
get your whole workplace involved!
This is an opportunity to come
together, to leave MS where it
belongs. Behind us.
https://www.themay50k.org
Do you have a story about living with a neurological condition in WA that other MSWA Clients might like to read?
We invite you to share your experiences with us.
Email your submission to bulletin@mswa.org.au for consideration.
Suggestions, complaints and compliments
We want to hear from you. Your feedback helps us to understand what is working well and where we can improve.
You can raise a concern or acknowledge the support an MSWA staff member has provided by telephoning 6454 3146,
via feedback@mswa.org.au or writing to Quality and Compliance; Locked Bag 2, BENTLEY DC 6983.
For more information, visit mswa.org.au/about-mswa/contact-us.
Saturday 20 April 2024
8am – 5pm
Albany Leisure and Aquatic Centre
The MSWA Albany Swim has
evolved into a highly anticipated and
cherished annual community event
for the Great Southern region.
Now in its 12th year, the event
welcomes all who live in the region
and those keen for a road trip to
participate in the energetic and
meaningful fundraiser helping to
provide vital support, services and
research to Western Australians
living with a neurological condition.
Sign your team up today at
www.mswaswim.org.au and push your
limits in an exhilarating 8-hour relay.
Get ready to make a splash and
celebrate the joy of swimming
together while making a difference.
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To find out more about our services,
create connections or show support
for cause, visit mswa.org.au.