MSWA Bulletin Magazine Autumn 2021

THE OFFICIAL MAGAZINE OF MSWA
Autumn 2021
mswa.org.au
INSIDE
/ Get to know your new President
/ Resilience: I get knocked down,
but I get up again
“It’s possible to rebuild your life
from the ground up, like I did.”
Rebecca Carbone on rehabilitation
from brain tumour and stroke, p 20-22.
/ MSWA’s $4m contribution
to research
/ 36 years of Bulletin

NURSING
WILSON CENTRE
29 Parkhill Way 9365 4888
Fax 9451 4453
Freecall 1800 287 367
See Health Team Dept contacts on this page
SERVICES DIRECTORY
GENERAL MANAGER –
MEMBER & CLIENT SERVICES
Nicola Washington 9365 4840
MANAGER ALLIED HEALTH SERVICES
Carol Chong 9365 4873
NDIS TEAM 9365 4824
OUTREACH GROUPS
Wilson Outreach 9365 4830
Beechboro Lodge 9377 7800
Southside Outreach 9592 9202
Albany Outreach 6154 5149
Bunbury 6454 2800
GENERAL MANAGER -
STRATEGIC SUPPORTS
AND RESIDENTIAL OPTIONS
Sue Shapland 6454 3174
MARGARET DOODY RESPITE HOUSE
Manager, Alimul Tasin 9385 9574
FERN RIVER ACCOMMODATION
Manager, Danuta Figurska 9356 2747
HAMILTON HILL ACCOMMODATION
Manager, Jo Nouwland 9331 5780
TREENDALE GARDENS
RESPITE & ACCOMMODATION
Manager, Linda Kidd 9725 9209
BUTLER SUPPORTED
ACCOMMODATION FACILITY
Manager, Chris Rush 6154 5120
CONTACT US
If you would like to comment on anything
you read in this Bulletin please email
bulletin@mswa.org.au or write to
MSWA, Locked Bag 2, Bentley DC WA 6983
For general feedback or complaints please
contact Michelle John 6454 3173 or
feedback@mswa.org.au
EDITORIAL WORKING GROUP
Sue Shapland, Nicola Washington, Libby
Cassidy, Jamey Claffey, Tracey Hockey and
Nicolette Murphy.
CONTRIBUTORS
Geoff Hutchinson, Carol Chong, Misty
Reinkowsky, Dajana Tesevic, Judith Clark,
James Beckett and Crystal Chan.
The Editorial Working Group welcomes
unsolicited submissions.
All articles are subject to a reviewing
process. The views expressed are those
of the authors and do not necessarily
reflect the view of MSWA’s staff, advisors,
directors or officers.
Our neurological liaison nurses are usually the first point of contact after the
neurologist’s diagnosis.
VANISHREE CHETTI, MANAGER: 9365 4818 OR COMMUNITY NURSE: 9365 4888
PHYSIOTHERAPY
Our team provides treatment interventions to develop and maintain mobility
and function.
JAMES BECKETT, MANAGER: 9365 4837 OR PHYSIO DEPARTMENT: 9365 4834
OCCUPATIONAL THERAPY
Occupational Therapists enable Clients to continue their work and other interests
for as long as possible through advice, aids and equipment.
CRYSTAL CHAN, MANAGER: 9365 4804 OR OT DEPARTMENT: 9365 4888
SPEECH PATHOLOGY
Our Speech Pathologists assess, diagnose and create individualised treatment
programs for Clients who experience swallowing and/or communication difficulties.
PAMELA WINDRAM, MANAGER: 6454 3140
DIETETICS
Dietitians are university-qualified nutrition experts who promote general health
and disease prevention/management through dietary changes.
PAMELA WINDRAM, MANAGER: 6454 3140
COUNSELLING, PEER SUPPORT & HEALTH EDUCATION
Talking with a Counsellor creates a safe, respectful and confidential environment
for you and those close to you to explore options, create change or gain
understanding about your life.
TO MAKE AN APPOINTMENT PLEASE CALL: LISA PAPAS, MANAGER: 9365 4836
OR COUNSELLING DEPARTMENT: 9365 4811
SOCIAL WELFARE
Social Welfare Officers assist Clients and their families to access services
and supports to remain living independently at home. They specialise in case
management, advocacy and sourcing funding options.
KATH KNIGHTS, MANAGER: 9365 4835
COMMUNITY SUPPORT
We provide long-term and time limited in-home supports including assistance
with personal care for people with MS, to help them remain in their homes.
Care and supports are provided through a combination of funding from the
Department of Communities - Disability Services, and our own fundraising efforts.
VICTORIA AMEY, MANAGER: 9365 4851
CUSTOMER ENGAGEMENT DEPARTMENT
Our experienced teams will provide you with personalised support right
throughout your NDIS journey. From helping you to access the NDIS to working
with you to get the most from your plan, our trained staff are here to help.
GEOFF HUTCHINSON, MANAGER CUSTOMER ENGAGEMENT: 9365 4879
CAMPS & RECREATION
MSWA provides separate recreation camps for Clients, carers, and families,
primarily funded by Lotterywest, and for a nominal cost to participants.
These camps provide a break from daily routines, and strengthen friendships
and support networks.
COORDINATOR FOR CAMPS & RECREATION: 9365 4843
AGED CARE
MSWA delivers all levels of Home Care Packages to eligible people with
a neurological condition who are over 65. Services are delivered by staff
specifically trained in home care for older Australians who are living with a
neurological condition.
JUDITH CLARK, AGED CARE COORDINATOR: 9365 4807
2

WELCOME
Welcome to the autumn 2021 edition of Bulletin. We hope you enjoy the news, stories and
service information we have brought to you this quarter.
CONTENTS
FROM THE DESK OF THE CEO. ...... 4
GENERAL MANAGER STRATEGIC
SUPPORTS AND RESIDENTIAL
OPTIONS ........................... 5
GENERAL MANAGER
MEMBER & CLIENT SERVICES ....... 6
BULLETIN: BEHIND THE SCENES. .... 7
36 YEARS OF BULLETIN. .......... 8-9
RESEARCH ROUND UP. ..........10-12
RESEARCH IN FOCUS ...............13
PROTECTING YOURSELF AND
OTHERS IN THE FLU SEASON. ...... 14
NDIS OPENING DOORS
TO MORE PEOPLE ..................15
GET TO KNOW YOUR
NEW PRESIDENT ................ 16-17
I GET KNOCKED DOWN,
BUT I GET UP AGAIN ................18
MSWA PROPERTY UPDATE. .........19
REBUILDING YOUR LIFE
FROM THE GROUND UP . ....... 20-22
SKYDIVING INTO THE BLUE . ....... 23
OUTREACH HAPPENINGS:
BEECHBORO ...................... 24
DID YOU KNOW.... ................. 25
VOLUNTEERING AND CAMPS
PROGRAM. ........................ 26
MEMBERSHIP AT MSWA . .......... 27
AN ARTICLE TO SELF .............. 28
BRAIN GAME . ..................... 29
WHAT'S ON. ....................... 30
COVID-19 VACCINATION
GUIDANCE. .........................31
SUGGESTIONS, COMPLAINTS
AND COMPLIMENTS . ...............31
3

FROM THE DESK
OF THE CEO
MARCUS STAFFORD
CEO
Most meetings that I have with
our President are easy. We are
usually talking about strategy and
performance.
The most recent one, however,
was difficult for me. This was the
conversation where I advised Ros of
my semi-retirement in general that,
of course, included my resignation
from MSWA. If I’m a halfway near
decent CEO, it shouldn’t have come
as a surprise. I’ve been preparing the
pathway for our fine organisation
for some time. But, even with the
scene set and the foundations
laid, being your CEO for nearly
twenty years has been both an
honour and a privilege, so that final
announcement was hard to make.
I won’t pass the baton until October,
so that we can ensure a smooth and
seamless transition and of course,
plenty of time for proper goodbyes!
As I sat down at my desk and
wrote the resignation letter, I
found myself thinking about the
incredible journey that we have
taken together. You’ll be relieved
to know that I will not relive that
journey today, or your casual
read of Bulletin might require a
deeper commitment!
Instead, just a flavour will do. Day
one was pretty unforgettable!
Before driving home that evening
I had been heckled in my first
presentation and confronted by a
few folk (quite a few in fact) who
were keen to let me know about
the decisions that I had to make.
And all before lunch! As a man who
had come from the relatively sterile
environment of banking, I was
struck by the passion of Members,
staff and volunteers. I reckoned
that if we could harness that for a
common purpose, we would do
some really good things.
As over the years, I bathe in the
reflected glory of our wonderful
management, staff and Board. As I
savour the wisdom and input of our
Members, Clients and volunteers.
As I appreciate the contributions of
everyone, I feel reassured that we
have done some really good things.
Everyone will have their own
highlights reel. For some, it
might be the opening of our new
accommodation centres and
services hubs. For others, the day
we became the largest funder of MS
research in our nation’s history. Or
perhaps the new physio program.
Or record growth in care support. Or
creation of family respite. Or maybe
climbing the ladder to be one of the
top three not-for-profits in Western
Australia. The list will go on, and I
don’t finish until October!
My highlights reel includes
those, but for me, I think
it’s been the human
moments that leave the
strongest memories.
The young couple, sitting in my
office, discussing the new approach
to their lives after the shock of
her diagnosis. Initially a mood of
despair, but ending with a positive
sense of liberation.
The woman who had been confined
to a wheelchair, taking her first
tentative steps after undertaking
our intensive physio program. And
her tears at that achievement. And
the tears of our physiotherapists.
Let no-one say that professional
boundaries prevent human
engagement!
Plus, perhaps those light-hearted
moments before the age of
enlightenment. Seeing the smiles
on the faces and listening to the
laughter of ‘the crowd’, as our senior
managers made fools of themselves
at the Members’ Christmas party.
Good sports one and all!
As I head towards a sunset of
semi-retirement, I reflect on our
achievements, driven by the
unflinching goal of making the lives
of folk with neurological conditions
just a little bit easier. All of that
down to the broader team effort.
Thank you.
However, I don’t go until October, so
plenty of time for proper goodbyes!
4

STRATEGIC SUPPORTS
AND RESIDENTIAL
OPTIONS
SUE SHAPLAND RN, BN, MSCN
GENERAL MANAGER
STRATEGIC SUPPORTS AND
RESIDENTIAL OPTIONS
“Put on your positive pants”
Unknown.
Well, I found this quote and it
caught my eye and made me laugh;
haven’t we all needed our positive
pants at some stage over the last
12 months!
As COVID-19 continues to be a thorn
in our side we can increasingly
appreciate how Australia has
thankfully been spared the dire
circumstances we are seeing
overseas. Thank goodness our
Government and health authorities
acted swiftly and continue to do
so. The roll out of the COVID-19
vaccination is proving a challenge
due to reduced supplies arriving
and then the concerns regarding
the very rare adverse events
experienced related to clotting. The
Government is encouraging the
vaccinations as they will help us get
back to some normalcy, especially
regarding travel.
Of course, here in WA we have had
the additional challenges of the
bushfires and then a cyclone in April
which showed us how vulnerable
our telecommunications networks
are! Amazing – you can chat with the
astronauts in outer space but lose
all internet and phone connections
for 1 to 3 days here on earth.
Great news, with another MS
therapy being added to the list of
PBS approved medications and I
have been very interested to hear
there are trials happening on a selfinjectable
version of Tysabri, to be
given monthly.
I am really getting excited about the
construction of our ten residential
units in Albany; well under way now
and we are hoping to move the first
residents in during February 2022.
As with Butler, a Services Centre
will be co-located, providing our
local Clients access to allied health
services and giving our Albany
Outreach a permanent place to call
home! Stay tuned for more news
as the build develops. I really enjoy
visiting Albany and will have a great
excuse to go more often now.
As you may know, we are also in
the design stages of our Montario
Quarter supported accommodation
facility – twenty units in a twostorey
facility located in Shenton
Park. This will be amazing; I can’t
wait to see the design drawings
and schematics!
MSWA continues to increase our
funding for research, $4 million
this financial year! We are holding
our Annual Client Forum on 15
September where you can hear
from some of our researchers and
their exciting work, so save the
date and keep an eye out for
further details.
Please consider having your flu
vaccination as per our article in this
Bulletin. Last year’s flu numbers
were down due to increased uptake
of the vaccination and reduced
travel, but importantly the COVID-19
precautions – like hand washing,
social distancing and staying home
if unwell – all helped reduce the risk
and spread.
Our teams are all busy with our
preparations for re-registering as
an NDIS provider and undertaking
both self and external audits as part
of our accreditation process.
I hope you enjoy this Bulletin
and that you stay safe and
well, especially across the
coming winter months.
5

MEMBER &
CLIENT SERVICES
NICOLA WASHINGTON
GENERAL MANAGER
MEMBER & CLIENT SERVICES
Welcome to the autumn
edition of Bulletin.
As we move into autumn, we can
start to enjoy the cooler weather
with the wonderful sunny days we
are lucky to enjoy in Perth.
With the cooler weather comes the
flu season and as always, MSWA has
been busy providing the flu vaccine
to our employees at our various
locations.
The COVID-19 vaccine remains a hot
topic and the progression of the roll
out that has certainly been slower in
Australia than some other countries.
As previously advised, please
contact your GP or neurologist if
you have any questions regarding
the vaccine.
Our new development
in Albany continues to
progress well and is receiving
much excitement from
the community. We look
forward to opening this
wonderful centre to service
the community of the Great
Southern region in 2022.
Sunday, 11 April, was World
Parkinson’s Day. Our Physiotherapy
Manager, James Beckett is active
in the promotion of strength and
movement for people living with
Parkinson’s. We would like to thank
Client Charles Van Niekerk and
his wife Nola, who held a fabulous
community fundraiser which will
enable us to purchase an additional
Fightmaster boxing machine to
assist people living with Parkinson’s.
Wednesday, 12 May, was
International Nurses Day. Our
neurological liaison nurses continue
to provide valuable support through
the hospital clinics, working closely
with neurologists to assist Clients.
This can include supporting those
newly diagnosed with multiple
sclerosis, as well as ongoing
support. Our nurses are also across
the motor neurone disease clinics,
providing support across various
stages of diagnoses. In addition to
clinics, our nursing team provides
support and education out in
the community.
MSWA Client, Charles Van Niekerk
demonstrating the benefits of the
Fightmaster boxing machine.
Our cover story for this edition charts
Rebecca Carbone’s rehabilitation
from brain tumour and stroke, at
just 30 years of age. Her journey is
testament to the difference that
personal motivation, combined
with receiving the right type of
support, can make to those living
with a neurological condition.
NDIS NEWS
The new Minister for the National
Disability Insurance Scheme is
Linda Reynolds, who takes over
from Stuart Roberts.
The new Western Australian
Minister for Disability is Don Punch,
who takes over from Stephen
Dawson.
Linda Reynolds has put a hold
on the implementation of the
Independent Assessments that
were due to be introduced for
NDIS participants in 2021. The
Independent Assessments will not
be rolled out until a second pilot
has been completed and further
consultation has been conducted
with key stakeholders.
This is welcome news due to
the uncertainty of how these
Assessments would be conducted
and how they would benefit NDIS
participants.
If you have any questions
regarding your NDIS plan,
please do not hesitate to contact
ndisenquiries@mswa.org.au. Our
team is always ready to help you
navigate any problem or question
you may have.
6

BULLETIN: BEHIND THE SCENES
With our regular Guest Editor, Ros Harman, stepping into her role as the new MSWA President of
the Board, we have adapted the way content is devised and articles are written for your Bulletin.
Our new Editorial Working Group will meet quarterly to plan and create each edition of Bulletin. The team consists
of the General Manager Strategic Supports and Residential Options, the General Manager Member & Client
Services, two members of the Brand & Communications team, and two MSWA Clients living with different
neurological conditions.
In this edition, we are delighted to introduce you to our first two Client representatives, who will have a one year
tenure on the Editorial Working Group.
TRACEY HOCKEY
My name is Tracey Hockey, I am 56 years old and in April
2016 I had a stroke. The stroke I had was caused by sleep
apnoea and, without knowing it, I had been having mini
strokes. This caused me to awaken with a headache
every night for six weeks prior to the big stroke that has
changed my life forever.
Up until that point I had been the one in my family that
everyone came to for support and then it was me who
needed support. It is not an easy thing to ask, look, or
reach out for support when you are struggling to find
a new you. I'm not sure how it happened but amidst
finding my way I had the help of a lovely lady at MSWA
who guided me to find the support I absolutely needed.
In my life I have always gone with the flow and stepped
into doors when they open. For instance, MSWA put
me onto a wonderful trial at ECU called the Mindpod
Exoskeleton Trial. It was through this amazing trial
that I met the lovely lady who runs MSWA’s Brand &
Communications team. Her energy made me smile and
after listening to her vision for the Editorial Working
Group I felt that another door had opened. There was a
feeling that I have personal experience that as a Client
of MSWA I can share. So I have stepped into this new
journey and feel so blessed to be able to pay it forward to
a rehabilitation provider that has given me the chance
to be the best I can be.
NICOLETTE MURPHY
Hi my name is Nicolette. I was diagnosed with MS
in 2010 and I live in the north of Perth with my two
teenage boys.
I was born in England and my parents are from Mauritius.
My boys and I moved to Perth from London in 2005.
We have a very full lifestyle and receive a lot of support
from MSWA, which we are very grateful for. For a
London girl to have ended up in WA, where the sun
always shines and I have access to so much help, I truly
believe I’m in the right place at the right time, and that
anything is possible.
I feel very privileged to be involved in the Editorial
Working Group. It is an opportunity to share my
experience and be a part of information distributed in
written form to fellow Clients and friends. It’s a wonderful
community to be a part of.
7

36 YEARS OF BULLETIN

Did you know that Bulletin magazine has been in publication since 1985?
It began as Bulletin MS, ‘a monthly circular for the Society and its members, by members, their helpers
and associates’.
36 years later, MSWA’s Bulletin reflects a much larger, adapted and more diverse organisation, but the
publication’s ethos is the same: it’s for you, and it’s by you.
The 1985 editorial committee consisted of Lorraine Simons, Cal Dagnall, Colleen Fletcher, Alan Seymour and
Greg Brotherson. Remarkably, Greg continued to edit the magazine for 36 years, only recently stepping
down for health reasons.
For the history buffs among you, we have delved into the archives to bring you one of the earliest
editions of Bulletin for your reading pleasure. Fascinatingly, it documents the approval for the introduction
of MRI scanners in Australia – a pivotal moment in history for the diagnosis and management of
neurological conditions.
You will also enjoy Greg Brotherson’s regular column ‘From the Video Shop’.
And we wonder what today’s young Readathon winners would make of a cassette player as their prize?

RESEARCH
RESEARCH
ROUND UP
SUE SHAPLAND RN, BN, MSCN
GENERAL MANAGER STRATEGIC SUPPORTS
AND RESIDENTIAL OPTIONS
FROM THE MS SOCIETY UK
Read more at: msra.org.au
New Links Between B Cells and
EBV Infections in Women with MS
WA researchers investigated B
cells, antibodies, and signs of EBV
infection (glandular fever virus) in
the blood. They compared people
with MS experiencing a relapse,
and people with clinically isolated
syndrome (CIS) before an MS
diagnosis, to people without MS.
The research revealed for the first
time, that levels of CD32b, a receptor
molecule on the surface of B cells,
are lower on particular types of B
cells in people with MS and CIS when
compared to healthy controls, but
only in women. Thus, it is possible
that B cells in women with MS are
less able to switch off excessive
responses, and/or less able to switch
off autoimmune responses.
They also found this phenomenon
in women with MS was associated
with higher levels of a special B cell
activating factor in the blood, with
tests suggesting that the previously
inactive EBV in the body was
reactivated. This was particularly
evident in those with CIS.
Women are almost three times
more likely to develop MS than
men. The CD32b molecule prevents
autoimmune disease in laboratory
models. The discovery that the
CD32b molecule is reduced in
women who have CIS and MS opens
new avenues to understanding
the autoimmune process in MS
more generally.
Discovering unique differences
in the immune system of women
with MS may also help us to
understand why women are more
susceptible to developing MS. As
EBV is an important risk factor
for MS and possibly a driver of the
MS disease process, further work
is also warranted to understand
how the CD32b molecule is related
to the control of EBV infection
in MS, particularly early in the
disease process.
MS Heat and Fatigue: Does it Come
Down to Sweating?
Heat fatigue is a very common
symptom of MS, which causes
feelings of exhaustion and
worsening of other symptoms.
Australian researchers try and pin
down the causes of heat fatigue
in people with MS. Researchers
explore whether people with MS
have any changes in their ability to
sweat and whether this influences
their heat fatigue.
Previous observations suggested
that people with MS are less able
to regulate their temperature due
to an impaired sweating capacity,
ie, delayed or reduced sweating.
This makes their body temperature
rise more quickly, possibly due
to a change in sensitivity of the
damaged neurons that detect heat.
The current study, led by Dr Ollie
Jay from the University of Sydney,
aimed to demonstrate whether this
impaired sweating response during
exercise was enough to raise the
core temperature of people with
MS. The study also investigated if
it resulted in a reduced capacity of
people with MS to perform exercise,
compared to those without MS.
10

HERE WE PROVIDE SOME SUMMARIES OF RESEARCH SOURCED FROM WEBSITES IN AUSTRALIA AND
AROUND THE WORLD; WE HOPE IT’S OF INTEREST TO YOU.
IN THIS EDITION WE HAVE INCLUDED MS, STROKE, MND AND PARKINSON’S DISEASE RESEARCH UPDATES.
READ MORE AT MSWA.ORG.AU/RESEARCHUPDATE
The researchers found the ability of
people with MS to complete exercise
in either warm (30°C) or hot (35°C)
environments was compromised,
compared to those without MS. The
onset of sweating in people with MS
was delayed in both environments,
however, reductions were only
observed on the forearm, and not
the upper back. Nevertheless,
similar rises in rectal temperatures
were observed between the MS and
non-MS group throughout 60
minutes of exercise in both the
warm and hot environments. As the
heat affected non-MS people too,
this suggests that any impairments
in regulating body temperature in
people with MS are not sufficient
alone to accelerate body heating
during exercise.
Given the findings, it’s suggested
that future research should focus on
practical and economical cooling
strategies to overcome heatrelated
fatigue and the onset of MS
symptoms during physical activity
and/or heat exposure in warm and
hot environments.
FROM SHAKE IT UP AUSTRALIA
Read more at: shakeitup.org.au
Targeting gut bacteria to treat
Parkinson’s symptoms
A clinical trial looking at constipation
and gut dysfunction is now under
way at the University of Queensland.
The trial will determine if a targeted
treatment can restore specific
beneficial gut bacteria that are known
to be substantially reduced in people
with Parkinson’s. The latest scientific
thinking suggests a strong link
between gut bacteria and Parkinson’s
– particularly around the harmful
role that altered gut bacteria and
their metabolic products may play in
contributing to the disease process.
A significant issue for people
with Parkinson’s is a slowed
digestive tract movement, leading
to constipation – adding to the
challenge of having the disease, and
the negative impact on a person’s
quality of life.
The Queensland Drug Repurposing
Initiative received $1.5 million in
Advance Queensland funding to
build infrastructure and research
capacity to accelerate clinical trials
for neurological diseases such as
Parkinson’s, using approaches such
as drug repurposing.
“Our first clinical trial will use a
proprietary bacterial substrate
developed by Anagenix Ltd, which
we believe can restore specific
populations of beneficial bacteria
that are progressively reduced
in people Parkinson’s as the
disease progresses.
“While the focus of this trial will be
on constipation and gut function,
the research we perform on the
patient samples from this study,
will provide us with valuable
insights into the potential of this
approach to reduce inflammation
and other pathological processes
associated with Parkinson’s disease
progression. This will tell us if similar
treatment strategies targeting gut
bacteria may have the potential
to slow or halt the progression of
Parkinson’s, which is the ultimate
goal of our research program”
Dr Richard Gordon, QDRI Research
Lead, said.
FROM THE STROKE FOUNDATION
Read more at:
strokefoundation.org.au
Australia destined for world’s first
stroke air ambulance
Australia is set to save lives and
lead the way internationally with
the latest innovation in stroke
treatment and care – a stroke air
ambulance. The Stroke Foundation
will be a primary partner in The
Stroke Golden Hour research
project awarded $40 million under
Stage Two of the Frontier Health
and Medical Research Initiative.
The Stroke Golden Hour project is
developing lightweight portable
brain scanners, meaning they can
be put into ambulances on the
roads and in the air. This will allow
rapid diagnosis and treatment to
those who have a stroke, saving
lives and reducing disability.
Australians in regional and rural
areas have been denied the highquality
stroke treatment provided
to their metropolitan counterparts.
This announcement is an exciting
step forward in ending that.
Australia’s broad geography will no
longer be a barrier to time-critical
stroke treatment.
More than 27,000 Australians will
experience a first time stroke this
year. Rural and regional Australians
are 17 percent more likely to have
a stroke and are more likely to
have a poorer outcome due to
limited access to stroke specialists,
treatments, and care.
11

RESEARCH
Ms McGowan, CEO of the Stroke
Foundation, said when treating stroke,
“time is brain”. Treatment needs to be
offered within the first few hours and
preferably within the first ‘Golden
Hour’. In a country the size of Australia,
this has been a problem.
This research project is led by
co-chief investigators Professors
Geoffrey Donnan and Stephen
Davis at the University of Melbourne
and the Royal Melbourne Hospital
(RMH) and brings together experts
from more than 30 of Australia’s
leading health and academic
institutes and charities as The
Australian Stroke Alliance. The aim
is to reduce mortality and narrow
the urban, rural, and Indigenous
healthcare gaps. Professor Donnan
said this program has the scope to
transform stroke treatment around
the world.
The announcement by the Federal
Government, follows an initial $1
million grant, awarded in 2019
through the Medical Research
Future Fund to kickstart the project.
$4 million has been provided by
philanthropic partners.
FROM FIGHTMND
Read more at: fightmnd.org.au
Pre-Clinical Development of SOD1
Genetic Therapy in Sporadic MND
WA Murdoch University based
researchers, Prof Steve Wilton, Prof
Anthony Akkari and Dr Loren Flynn,
are conducting MND research;
one area focussing on identifying
genetic markers that may explain
the missing heritability of MND, and
could help to predict age of onset
and duration of disease.
In discovering such markers,
they will co-develop these with
our antisense therapy pipeline to
identify the best drug for the right
patients. The researchers have
also identified genetic markers
that appear to play an important
role in sporadic MND and predict
these markers could contribute to
understanding patient response
in clinical trials. They are hopeful their
discovery of the SOD1 suppression
molecule will have broad implications
for treating sporadic MND.
The research team is aiming to
advance their exciting new genetic
drug so that it is ready to test in
MND clinical trials.
Recently, the team found that
their lead drug, a SOD1-targeted
antisense oligomer, delays the
onset and slows progression of
MND-like symptoms in a hereditary
preclinical model of MND.
FROM MND AUSTRALIA
Read more at: mndaust.asn.au
Novel therapeutic strategies
targeting TDP-43 in Motor Neurone
Disease; A/Prof Yazi Ke, Macquarie
University, NSW
The research team has discovered
a new, previously unidentified
protein complex that appears to be
involved in motor neurone disease
(MND) which contributes to disease
processes such as nerve cell death.
Their proposal has three main aims:
firstly, to understand how different
components of this protein complex
contribute to its function; secondly,
to study this protein complex in an
established MND mouse model to
understand its disease-relevance;
and finally, to harness the knowledge
of this protein complex in the
development of two highly feasible
therapeutic approaches in a preclinical
setting. It is hoped this project
could identify new therapies for MND.
NEW MS THERAPY
Ofatumumab (Kesimpta®) is a new therapy for relapsing MS approved by the TGA and
recommended for subsidy through PBS by PBAC.
Ofatumumab is an antibody
against a protein called CD20 found
on the surface of certain types of
immune cells called B cells. It is
similar to another MS medication
ocrelizumab (Ocrevus), which also
targets cells with CD20 protein on
their surface.
Self-administered once per month
via injection, ofatumumab uses a
Sensoready Pen which autoinjects.
Ofatumumab was approved by the
Therapeutic Goods Administration
(TGA) on 4 March 2021 for the
treatment of adults with the
relapsing forms of MS in Australia.
An application was made to
the Pharmaceutical Benefits
Advisory Committee (PBAC) to
have ofatumumab listed on the
Pharmaceutical Benefits Scheme
(PBS). On 28 April 2021, the PBAC
provided their recommendation for
ofatumumab to be subsidised. This
positive endorsement will now be
passed to the Federal Government
for final approval. Once this
happens, ofatumumab will become
an affordable treatment for people
with MS.
We recommend that people living
with MS speak to their neurologist
about what treatment best suits
their individual circumstances.
12

RESEARCH IN FOCUS
Here, we provide an insight into the research projects we are funding in Western Australia. In
this edition, we look at our overall record-breaking contribution this year.
OUR RECORD CONTRIBUTION
OF $4M
MSWA is proud to be Western
Australia’s leading contributor to
neurological research. Funding this
work is a priority for MSWA because
it creates real outcomes for people
living with a neurological condition,
by making new medical discoveries.
In early 2021, we announced our $4
million contribution to research. This
is a new record that highlights our
commitment to research and how
much we value our community of
fundraisers and supporters who
help make all of this possible.
MSWA is currently supporting
research projects being conducted
by the Perron Institute, Edith Cowan
University, Curtin University, Telethon
Kids Institute, MS Research Australia
(MSRA) and the International
Progressive MS Alliance.
SOME OF THE KEY PROJECTS
We are excited to be funding
Neuroplasticity Research led by
the Perron Institute’s Associate
Professor Jenny Rodger. The study is
investigating the ability of the brain
to change and rewire, or modify
damaged neural connections using
non-invasive brain stimulation.
Senior Research Fellow Dr Lucinda
Black is leading a team at Curtin
University who are examining
Dietary Implications in MS
Research. The research involves the
analysis of various dietary factors,
patterns of food, nutrients intake,
and their link to the risk of MS
and disease progression. To date,
research has been undertaken in red
meat, fatty omega-3 acids, vitamin
D and ultra-processed foods.
Translating Research into Practice
is a probe led by Executive Dean
of Medical and Health Sciences
from Edith Cowan University,
Professor Moira Sim. The research
is looking into several therapeutic
interventions and who they will
most benefit – specifically for
people living with a neurological
condition. Research is currently
being conducted to see the effect of
light therapy glasses on fatigue and
daytime sleepiness. Additionally,
the study is using a virtual reality
video game with an exoskeleton
apparatus to improve upper
limb mobility.
Finally, a study housed in the
Telethon Kids Institute, is trying
to understand the possibility of
delaying the development of MS
in high-risk individuals. The UVB
Treatment Research is driven by
Professor Prue Hart, as the team
investigates the causal links for
changes to blood cells associated
with the worsening of MS.
MSWA also allocates significant
funding to MSRA (Multiple Sclerosis
Research Australia) which is then
allocated to various Australian MS
research projects. A nominated
portion of this is also used to support
the International Progressive MS
Alliance – a global collaboration
working towards finding a
greater understanding and better
treatments for Progressive MS.
READ MORE
For more information about
MSWA’s commitment to research
and research projects we are
currently funding, visit our website:
https://mswa.org.au/news-research/
commitment-to-research.
13

NURSING
PROTECTING YOURSELF AND
OTHERS IN THE FLU SEASON
DON’T FORGET YOUR FLU SHOT
Each winter brings the risk of
influenza and annual flu vaccinations
are now being offered. The Australian
Government recommends everyone
over the age of six months has the
flu vaccination every year, especially
those at risk – the young, the elderly
and those with pre-existing illnesses.
Our Clients often ask whether they
should have the vaccination.
People with neurological or other
chronic conditions are advised to
discuss any concerns with their
treating neurologist or GP as soon
as possible; it is essential to have the
vaccination earlier rather than later to
reduce the risk of contracting the flu.
Our medical advisor Professor
Bill Carroll offers the following
comment for people with MS:
"There is no evidence that these
vaccinations make MS worse
or cause a relapse. Should a
relapse occur around the time
of flu vaccination it is thought
to be coincidental. Occasionally
people with MS can have a brief
exacerbation of existing MS
symptoms, due to vaccination
associated fever or fatigue, but this
is not worsening of the MS.
SUE SHAPLAND RN, BN, MSCN
GENERAL MANAGER
STRATEGIC SUPPORTS AND
RESIDENTIAL OPTIONS
People with MS are advised to
discuss any concerns with their
treating neurologist or physician as
soon as possible as it is essential to
have the vaccination earlier rather
than later to reduce the risk of
Getting vaccinated helps protect
both you and those around you. It’s
particularly important to protect
vulnerable people in the community
who can’t be vaccinated, such
as babies who are younger than
contracting the flu".
six months and adults with
It’s difficult to predict who will
low immunity.
catch the flu, or who will become
seriously ill from it. The flu can
require someone to be hospitalised
and can even be fatal, especially in
the elderly and children under two.
The Government funded Health Direct
(healthdirect.gov.au/colds-and-flu-treatments)
is packed with health information and advice.
You can call a Health Direct RN 24/7
for free advice: 1800 022 222.
14

CUSTOMER ENGAGEMENT TEAM
NDIS OPENING DOORS
TO MORE PEOPLE
Late in 2019, I had the pleasure of travelling to Albany to take part in several National Disability
Insurance Scheme (NDIS) Information Sessions supporting the upcoming NDIS roll-out across
the Great Southern region.
At one session, we were joined
by MSWA Clients, local GPs, other
service providers, and one lady
who found out about the event
from someone in the local pub.
It was this lady who provided the
lasting memory for me, as when
I spoke with her she disclosed she
had POEMS syndrome, a condition
so rare that she is one of only five
across Australia with the condition.
The reason this lady’s story and
her condition has stuck with me
18 months later was not because
she was incredibly nice (she was)
rather it was because her story and
the story of thousands of other
participants nationwide is one of
the success stories of the NDIS. It
was because she may be one of the
212,504 participants (18,355 in WA)
who now are receiving support for
the first time under the NDIS.
It’s easy to find maddening,
befuddling and outrageous stories
about the NDIS and the experiences
of some of its participants. They
are in the media almost every day.
However, what is discussed less
often is the impact the Scheme
is having on so many people who
now have access to services that
would not have been possible when
funding was tied to organisations.
What is often missed in the rush
to declare the NDIS a failure
is that the Scheme is the first
opportunity for many of those
with rare conditions to have
access to ongoing care without
out-of-pocket expenses or
hospital stays.
This group is not a small number.
According to the latest Quarterly
Report, 52% of active participants
in WA are receiving support for the
first time. This means that over half
of the participants on the Scheme
now have choice, control, and
access to services helping them
to reach their personal goals. This
greater access for rarer conditions
is also being seen at MSWA. We
now have over 160 Clients classified
within smaller cohort conditions
enjoying the same access to MSWA
services as everyone else.
The NDIS as an idea is a remarkable
one that has the potential to
positively impact hundreds of
thousands of Australians. While the
NDIS as a reality has not reached
that potential yet, we should
recognise what the Scheme has
achieved and all those it has helped
in the short time since its inception.
GEOFF HUTCHINSON
MANAGER CUSTOMER
ENGAGEMENT
"I’ve had a really positive experience with the NDIS. Without NDIS
support I wouldn't have the services of an amazing provider like
MSWA, which has set me up to succeed in every aspect of living
with the lasting effects of stroke. The NDIS arrange an assessment
each year and it amazes me that out of an interview comes so many
more wonderful opportunities. Without these opportunities I believe
that I wouldn't be working three days a week, be able to get out into
the community, or see my family and friends."
TRACEY HOCKEY
MSWA CLIENT
15

GET TO KNOW
YOUR NEW
PRESIDENT
Recently, MSWA was pleased to announce Ros Harman as the new President of the Board.
To many readers, Ros needs no
introduction. As well as having been an
MSWA Client for 32 years and a Board
member for 16 years, Ros has been a
regular and much-loved contributor to
Bulletin since 2000.
Ros is passionate about writing and
public speaking, and many MSWA
Clients will have followed her honest
and informative articles about living
with a neurological condition.
Ros’ journey with MSWA began in 1988,
just after her 26th birthday, when she
was diagnosed with multiple sclerosis.
After noticing herself feeling
uncoordinated and clumsy when
playing basketball and walking to the
high school where she worked as an
English teacher, Ros found herself in
a neurologist’s clinic. MRI machines
had just been made available as a
diagnostic tool for MS, and Ros was
one of the first people in Perth to be
scanned for MS lesions.
“The diagnosis was a big shock,” says
Ros. “I didn’t really know what MS was,
but my neurologist recommended I
contact the MS Society immediately,
which I did.”
One of the first people she met at the
MS Society (now of course known as
MSWA) was Greg Brotherson, a name
many readers will also be familiar with,
having been editor of this magazine
for 36 years. “He found out I was an
English teacher and encouraged me to
start writing articles for Bulletin,” says
Ros. (Her first contribution to Bulletin
is pictured right).
At this time in her life, Ros was married,
with no children, but having a baby
was very much on her agenda. She
read everything she could about the
subject and decided to go ahead.
Her daughter Eleni’s birth went well.
“I relied on the support of the MS
Society a lot at this time,” she recalls.
“Because I had relapsing-remitting
MS to start with, each bout would see
me end up in hospital on intravenous
high-dose steroids. There was no other
medication available yet.”
When the MSWA Board were looking
for nominations in 2004, Greg
Brotherson put Ros’ name forward.
“Becoming a Board member enabled
me to learn a lot about the work MSWA
does. I’ve seen the organisation grow
and change over the years – to now
supporting all neurological conditions,
and building many new facilities.
“I’ve stood by and admired how MSWA
has kept going strong at times when
a lot of other organisations have
struggled. This, of course, is largely due
to Marcus being at the helm.”
Of course, Ros’ passion and insight are
informed by the fact that she herself is
an MSWA Client.
“My ability to stay independent is
largely due to MSWA,” she explains.
“I attend regular physiotherapy and I
have had invaluable advice from the
OTs and nurses over the years. I drive
using hand controls, and my car has
a wheelchair hoist. When I built my
house, I had input from the OTs, so my
bathroom is fabulous! I’m a big believer
in grab rails. The more the better!”
Now, as President of the Board, Ros’
ambition is to help the organisation
continue the good work of building
new facilities, supporting people who
need help, providing services, and
supporting research.
“We have plans to build more facilities.
I think that’s an important focus –
there are lots of people out there with
neurological conditions who will need
care and support in the future. We are
lucky to be in the financial position to
do that, thanks to the generosity of the
people who support our fundraising
activities like the lottery campaigns
and events.
16

“Of course, we will also be continuing to
support research as much as possible.
The right treatment can make such
a difference. When I was diagnosed,
there was no medication, only steroids.
It’s only since the late 1990s that
medication was introduced for MS
that really made a difference to newly
diagnosed people. I suspect if they
were around when I was diagnosed, I’d
still be walking.
“I’m following with interest the research
projects MSWA is currently funding in
WA that will have implications for MND,
brain injury, Parkinson’s, Huntington’s
and stroke.”
Ros is also passionate about
MSWA’s contribution to
international research.
“It’s so important for the
global community to work
together to find solutions.”
Left: MS Bulletin,
July 2000, pp13-14.
17

COUNSELLING
I GET KNOCKED DOWN,
BUT I GET UP AGAIN
How many of us can relate to this? It sums up resilience in a nutshell (and gives you a daylong
earworm). Certain ideas take root in popular consciousness, like mindfulness, and
resilience is another one – researched for decades and especially discussed last year during
months-long COVID-19 lockdowns. We want it and we need it – but what exactly is resilience?
Research tells us that most people
are resilient – you don’t have
to be extraordinary to get up
again. Resilience is the capacity
of people to handle adversity
with acceptance, adaptiveness,
optimism and grit. Challenges
are guaranteed in life, and from
childhood onwards, we can learn to
build our inner resources for coping
well. A resilient person is not spared
the bad times, but can respond to
them in ways that transform them
into opportunities for growth.
Resilience is made up of our
psychological attitudes (such as
holding onto a ‘realistic optimism’),
our emotional self-awareness
(knowing our personality, regulating
our feelings), our constructive
behaviours (reaching out for help,
learning new skills) and our spiritual
meaning-making (finding answers
for ourselves about how we can
get through and find positives in
our challenges).
If we break it down, resilience
includes:
/ Flexibility and adaptiveness
/ Positive thinking style
/ Problem-solving skills
/ Connection with external support
/ Communication skills
/ Perseverance
/ Trust and confidence in oneself
We can see that these qualities
are ones we are familiar with
in ourselves and others – one
researcher calls resilience ‘ordinary
magic’. Parents, schools, friendship
networks, spiritual communities,
sports and hobby groups, even
books and films, can all provide
contexts and role models for
learning these skills and attitudes
from childhood onwards. In
this respect, life itself is our
resilience coach.
Studies show that secure
attachments to one or both parents,
as well as to at least one close friend
in adolescence, predict a higher
level of resilience in young adults.
Protective factors also play a part,
such as:
/ Self esteem
/ The ability to plan ahead
for challenges
/ Adaptive coping skills
/ Social support
/ Emotional intelligence
We talk about bad times being
‘character-building’ for a reason!
Studies also show that resilient
people ‘bounce back’ from negative
events or circumstances more
quickly than others, even finding
new opportunities to contribute
to society as a result of what has
been learned – and this includes
those who are living with chronic
illnesses. Former Australian rules
footballer Neale Daniher, who
lives with MND, is one example.
Think about your journey with
your condition – how do you think
your personality has developed in
reaction to the obstacles, changes
and difficult emotions you have
experienced?
Resilience is “the core strength
you use to lift the load of life,”
according to Dr Amit Sood from
the Global Center for Resilience
and Wellbeing. To discuss and learn
more structured ways of developing
resilience, you can contact the
MSWA Counselling Service.
EVE PARSONS
MSWA COUNSELLOR
18

MSWA PROPERTY UPDATE
MSWA officially launches the development a $7m dual purpose facility in Albany.
In February, local MSWA Albany
Clients and staff were joined by our
CEO Marcus Stafford and members
of the Senior Management team to
officially launch the development of
our latest project – a new $7M High-
Support Accommodation Facility
and Services Centre in Albany.
From early 2022, the development,
which is now well under way, will be
the MSWA centre for people living
with a neurological condition in the
Great Southern.
“MSWA has been providing services
and supports to Albany locals living
with a neurological condition for
over two decades. We are looking
forward to opening a new modern
facility providing more care and
more services for our regional
Clients, and of course catering for
our high-support Clients as well,”
Marcus said.
19

MSWA CLIENT
REBUILDING YOUR LIFE
FROM THE GROUND UP

To any young person living with an acquired brain injury, Rebecca Carbone says, “It’s possible
to rebuild your life from the ground up, like I did”. Rebecca is passionate about improving
the rehabilitation experience of young people, something she says requires both personal
grit and determination, as well as surrounding yourself with people who understand that
an injured brain can do remarkable things to reorganise itself, when given the right therapy.
It was February 2014 when Rebecca
realised something was wrong.
She was working 50-60 hours per
week in the oil and gas industry
and suddenly became unwell.
Thinking it was a flare up of the
chronic fatigue syndrome she had
been diagnosed with in 2013, she
reluctantly took three months
off work.
However, three weeks after her
30th birthday, while getting ready
to meet a friend for coffee, Rebecca
felt an overwhelming urge to lie
down. Once she did, she couldn’t
move. Her body began to tremble.
“I was scared,” recalls Rebecca. “I
thought – am I having a seizure?”
Health Direct told her to go straight
to her local ER, who unfortunately
sent her away. “They told my
parents I presented like a young
person who was coming off drugs
and advised them to look at rehab
for me. Thankfully, my parents
didn’t believe this.
“My head hurt for days afterwards.
My GP, who knows me well, was
concerned. He booked me in for an
MRI ‘just in case’.”
Reassured, Rebecca prepared
to attend her best friend Nelly’s
engagement party. But again, she
lay down and started shaking. Her
speech was slurred and she couldn’t
attend the celebration.
It was Nelly who took her to the MRI
appointment days later. Rebecca
remembers how the radiology staff
were the same age as her, and that
they had a joke and a laugh when
she went in. “But when I came out,
they seemed suddenly serious,”
recalls Rebecca.
The next day, she should have been
wedding dress shopping with Nelly,
but her GP called and requested
she come in to the surgery. “I knew
what that call was,” says Rebecca.
Her GP was straight-faced. “They’ve
found something,” he said. “You’ve
got a brain tumour.”
Rebecca immediately asked about
her prognosis.
“Rebecca, it’s up to you,’ said her GP.
“If you want to live, you’ll fight. If you
decide you want to die, you may as
well give up right now.”
Rebecca told him she wanted to live.
THE NEUROSURGERY
“My parents were inconsolable,”
Rebecca recalls. “But my GP told
them to keep me happy and
calm, to keep me strong for the
neurosurgery.
“I phoned my best friend to ask if
she’d found her dress. She had. And
then I told her I had a brain tumour.
She was devastated, then we joked
that I was showing her up!” laughs
Rebecca.
At Murdoch Hospital, Rebecca
went for a second MRI to confirm
if the symptoms she had been
experiencing were a result of
seizures or strokes. “I was bleeding
from a tennis-ball-sized brain
tumour. I’d been having strokes.”
The week running up to the surgery
was emotional. Nelly asked Rebecca
to be a bridesmaid at her wedding.
However, Rebecca was convinced
she was going to die. “I wrote out
a list of who should looks after my
dogs and cats, who would have my
stuff. I saw friends, made amends,
tied up loose ends.”
On the morning of the surgery,
her parents were right by her side.
“They walked me down to theatre –
right in. That was when it really hit
me that they weren’t expecting me
to come out.”
Initially, it seemed the surgery to
remove the tumour went well.
Rebecca woke and was very
responsive. Unfortunately, at 6am
the next morning, she was rushed
to emergency surgery.
Rebecca has no memory of the
following month, which was spent in
ICU. She couldn’t see, move or speak,
and she was struggling to breathe.
Her doctors held a meeting with her
family. “They told my parents that
I needed to be moved into a care
home. That I was never going to
recover. That I would never function
independently again.
“Apparently, my dad – who is usually
quite gentle – stood up in anger and
stormed out of the room, declaring,
‘You don’t know my daughter!’”
THE ROAD TO REHABILITATION
After some negotiation, the State
Head Injury Unit admitted Rebecca
as a rehabilitation patient.
It was around this time that
Rebecca’s memories begin again.
She recalls her GP visiting and him
explaining to her, “Rebecca, you
had a massive stroke.”
Rebecca found her stay at rehab
harrowing. “I had to relearn everything
– all my gross motor skills. I still couldn’t
see and I was very photophobic. I cried
myself to sleep most nights.”
continued over >
21

MSWA CLIENT
When Nelly came to visit her,
Rebecca told her to choose a
new bridesmaid.
Nelly refused to hear it, saying,
“I’ll push you down the aisle in a
wheelchair if that’s what it takes!”
Rebecca thought, “Well there’s
nothing else for it – I’ll need to learn
to walk again.’”
COMING HOME
Upon discharge, Rebecca was
much more mobile, yet she still
couldn’t see. Her hands shook and
she needed the aid of a wheelchair
or stick to get around.
“This was as far as people thought
I would get,” explains Rebecca.
But she and her family refused to
accept that, and with the help of the
rehabilitation speech pathologists,
physiotherapists and occupational
therapists that visited her at home,
Rebecca continued to improve.
It was at this time that Rebecca
was introduced to neuroplasticity.
She recalls that reading The Brain
That Changes Itself by Norman
Doidge had a profound effect on
her. Neuroplasticity is defined as
the brain's ability to reorganise itself
by forming new connections. This
process allows the nerve cells in the
brain to compensate for injury and
disease and to adjust their activities
in response to new situations or
changes in their environment.
Rebecca realised that if she was
willing to put in the work, incredible
things could happen.
So she put in the work, committing
to practicing the exercises she had
been set for 2-4 hours daily, with the
help of her ever-positive dad.
Eventually her sight came back. Her
speech incrementally improved and
in October 2015, Rebecca walked
down the aisle, unaided, at her best
friend’s wedding in Queensland.
“I felt hopeful that I could still lead
a happy and fulfilled life despite the
brain injury."
LIFE AFTER REHAB
It took six months for the tumour
they removed from Rebecca’s brain
to be diagnosed. Rosette Forming
Glioneuroma of the Fourth Ventricle
is a rare type of tumour that affects
the central nervous system..
Rebecca’s just happened to be on
the brain.
Today, the tumour is still there.
However, it is very slow growing.
In 2016, two more tumours were
found on the brain stem. The
only intervention possible is close
monitoring via yearly MRIs.
Whilst Rebecca’s recovery
from what happened has been
significant, she still struggles with
symptoms like neurological fatigue,
vertigo, photophobia, tremors, slow
reflexes and migraines. A lot of
these symptoms are due to nerve
damage in her neck and shoulders.
In addition, she’s been advised that
the hormones from pregnancy may
impact the tumour growth. “It’s
another thing I’ve lost,” she says.
Remarkably, it wasn’t until two
years after the surgery that she
experienced a period of depression.
She recalls going to see her GP, who
asked her, “What do you want to do
with your life now?”
ADVOCACY & PUBLIC SPEAKING
In 2018, Rebecca began speaking
to neurologists and neurosurgeons
as a lived-experience speaker. Her
recovery defied the odds and her
journey is now used as a training tool
in hospitals across the state. She’s
also spoken as part of a local TEDx
event, currently sits on the Board
of the Ishar Multicultural Women’s
Health Centre, and is training to be
a life coach. Each May, she is heavily
involved in the international brain
cancer awareness campaign, ‘Go
Grey in May’.
Rebecca is passionate about
challenging the assumption that
a young person with a brain injury
will end up in full time care. “There
needs to be a focus on putting
more effort in at the beginning, and
tailoring the rehabilitation process
to the needs and interests of the
young person.
“You need to tie rehab in with what
people love. I made great progress
when a speech pathologist
incorporated my love of poems and
songs into the exercises she set.
“Surround yourself with the right
supports, who listen to what’s
important to you.” She recalls one
physical therapist laughing when
she said her goal was to walk in
heels again. “I’m a young vibrant
person, that goal was very serious
to me. He didn’t understand that.”
In 2018, Rebecca joined MSWA and
accesses counselling, occupational
therapy, physiotherapy, customer
engagement and social welfare.
She is particularly enthusiastic
about MSWA’s commitment to
research, particularly in the area of
neuroplasticity.
“Neuroplasticity exists and we
need to harness that power” says
Rebecca. “The possibilities could
be endless. It could be applied to
anything, not just disability or brain
injury.”
22

SKYDIVING
INTO THE
BLUE
TANYA MURPHY
MSWA CLIENT
Photos courtesy of Skydive Perth.
When I first told friends I was planning on going skydiving they asked if it was something
that had always been on my bucket list, something I just hadn’t got around to before I was
in a wheelchair. But the truth was, with my 50th birthday approaching, I was trying to find
something special I could do to celebrate the milestone.
Then one of my relatives told me
about someone they knew in a
wheelchair who’d gone skydiving
and I thought ‘If they can do it so
can I!’ I decided then that I wanted
to challenge myself. To really step
outside my comfort zone.
I religiously attend Physiotherapy
and Outreach every Tuesday at
MSWA Rockingham. My regular
Physios Luke, Sharon and Ashleigh,
who help me maintain my current
level of independence, cheered me
on when I told them about my plan,
and Luke even helped me to write
this article!
I booked in to skydive at York, just
outside Perth, only for Skydive
Australia to announce they were
shutting down their York operations
and moving to Rockingham. Never
mind, that suited me even better
living down this way.
So I re-booked at Rockingham for
early 2020 only for COVID to hit and
shut things down again! I told them
to keep the money and call me
when they re-opened. Despite the
setbacks I was determined to go
through with my plan.
When I heard they had reopened
I called them again and finally
booked in for 19 December 2020. A
year too late for my 50th birthday
but I was finally going to do it.
When the day came the team
at Skydive Australia were fantastic
at looking after me and making
sure everything I needed was taken
care of.
My tandem instructor
Don had even designed a
special harness for people
in wheelchairs that allowed
him to pull their legs up into
place for the landing if, like
me, they weren’t able to
do it themselves.
I won’t lie, when they first swung
my legs out of the plane ready to
jump, I thought ‘what am I doing?’
I had my eyes clamped shut at first,
but forced myself to open them and
enjoy the amazing view.
After landing all I could think
was ‘WOW!’ I’m so grateful that
someone in my condition was able
to have an experience like this. I
highly recommend the experience
for anyone and everyone, especially
anyone with a disability. Don’t
let your situation stop you from
chasing amazing experiences and
living out your dreams. If I can do it
anyone can!
23

ACCOMMODATION & OUTREACH
OUTREACH HAPPENINGS: BEECHBORO
Our Beechboro Outreach groups have been meeting for over 30 years. This year the Monday
group, colloquially known as ‘Eastside’, will turn 31 and the Friday group, known as ‘Northside’,
will turn 33. This is an amazing achievement.
As well as long term Clients, many
of which have been with the groups
since they started, there are staff
working at Beechboro Outreach
who have been working with MSWA
for over 20 years. Christine Weston,
who started as a care support
worker and now is relief coordinator,
began working in Outreach 17 years
ago this year. Brenda Smith, the
kitchen supervisor for the group,
has worked for 18 years cooking
up a storm twice a week. And big
congratulations go to Jackie Dinsey,
who is a care support worker and
this year is her 25th with MSWA.
Chrystal Ruthven is presently the
coordinator of the group, and
newcomer Emma Chute has been
assisting Chrystal, together with
care support worker, Jenny Joyce.
The team would not be complete
without the wonderful volunteers
who ably assist the staff. Peter
Barnes, who never misses a Friday,
is a very intricate part of the
team who always puts a smile on
everyone’s faces.
The Outreach room, where
Clients meet from 8.30am
onwards, is a large bright
and airy room with a warm
welcoming feeling from the
minute one steps in the door.
The activities this year have been
varied. A popular activity earlier this
year was slot car racing, where the
track and race cars were built on
the premises! Heaps of fun for those
who joined in.
In February there was an ‘inspiration
craft’ session where Clients
coloured and embellished an array
of formats, making some into to-do
lists using a whiteboard marker.
Quizzes, brain teasers, board games
and card games are very popular
with both groups.
March was a jam-packed month
starting with St Patrick’s day
activities. Hats off to both groups
for their enthusiasm in making
their personal t-shirts, celebrating
everything Irish! Clients wore
their handmade shirts on the day
and there was a prize for the best
Irish joke.
The end of March was the Easter
celebrations, with the main activity
being making your own chocolates.
Clients rolled up their sleeves to
join in, many speaking about the
memories it brought back of when
they were children.
A new activity being offered
from April is woodwork. Items on
the agenda for making include
bird feeders.
Some guest singers recently visited
the Eastside group. ‘Rock and roll’
was the theme of the day and
Clients were able to dress up for
the occasion.
Well done to all the Clients, staff
and volunteers who have made
Beechboro Outreach the success it
is today.
The two Beechboro Outreach
Groups meet at Beechboro Lodge
(corner Amazon and Darwin
Crescent in Beechboro) on Mondays
and Fridays.
If you are reading this and feel
Outreach is a place you would like
to visit, please contact Nicola Ryan,
Senior Outreach Coordinator on
9365 4830 or Chrystal Ruthven,
Outreach Coordinator on 6454 2878.
NICOLA RYAN
SENIOR OUTREACH
COORDINATOR
24

DID YOU KNOW…
Did you know that MSWA Treendale Respite can support you and your family to take a break
in the South West?
Our six bedroom purpose-built respite facility provides personalised care in a peaceful,
back-to-nature setting. Located next door is a wonderfully appointed three bedroom family
holiday unit, where families can get away together for a holiday in the South West whilst
accessing drop-in supports for their loved one.
“I first booked into Treendale six
years ago and since then, stay
for close to two weeks every
three months.
The benefits for me include being
in an environment where I am
comfortable, safe and secure, while
my husband (my sole carer) gets a
well-deserved break. The staff are
generous with their care, taking the
time to understand my individual
needs and my want for as much
independence as possible. They are
friendly and discreet.
I’m able to visit a cafe at the nearby
shopping centre on a regular basis.
I go there with family and friends
who live close by which is a bonus.
My stay is funded through my
NDIS plan.”
- Janet, MSWA Treendale Client
“We are grateful to have the
opportunity to stay together in
the MSWA Treendale Family Unit.
It unites us as a family, with the
support of caring and experienced
staff, who are available when we
require them and understand
our needs.
It brings us closer to family in the
area, who can also visit us in the
unit. We enjoy the close proximity
to many shops and the unit is
equipped with all the comforts of
home, allowing for an enjoyable
and relaxing country break away
from our normal routine.
The peaceful surroundings and
wheelchair accessible paths make
this an ideal setting for a family
who has a loved one with high
support needs.”
- MSWA Treendale Client
If you or a family
member are living with
a neurological condition
and want to find out more
about our respite options,
please contact us and
quote ‘Bulletin’:
Call 1300 097 989 or email
treendale@mswa.org.au
25

VOLUNTEERING, CAMPS & RECREATION
VOLUNTEERING AND
CAMPS PROGRAM
Hello to all our beautiful volunteers.
Winter is coming, and with the
cooler weather, often comes other
changes. It is important to adapt
and change and where possible,
go with the flow. Life is like a
wave, always flowing, shifting and
changing and it is important to try
and ride and move with it.
For me, there is a significant change
imminent: I have made the difficult,
(and I mean difficult), decision to
leave MSWA after nine and a half
years! I have loved working with this
organisation and supporting you,
our volunteers. I will miss you all,
and I will hold all of you dear to me.
I was so humbled to see so many
of you, and the staff, at my farewell
and let us just say it isn’t a goodbye
but a ‘see you later’. I am off on a
new adventure as a hiking guide
and will be fortunate to explore WA
a bit further, especially Karijini and
the Kimberley.
I am sure the next Volunteer and
Camp Coordinator will do a brilliant
job and bring a breath of fresh air
with them. I trust you will be in
good hands.
The National Volunteer Luncheon
in May will have been celebrated by
the time you receive this Bulletin,
and for those who attended, I am
sure you will have enjoyed the
banter, the great food, and the
company.
I received volunteering data back
in February which stated the
volunteering industry nationally is
not snapping back even though
restrictions are lifting. I know some
organisations are struggling, as the
statistics state that two out of three
volunteers stopped volunteering
during the height of the pandemic
in 2020, which equated a total loss
of an estimate 12.2 million hours
per week across Australia. However,
we have been so fortunate here at
MSWA, as most of our volunteers
came back and we have regular
enquiries from people wanting to
volunteer every week. We are truly
blessed as an organisation.
I have been on two camps
since the last Bulletin. We
had the carer’s retreat at
Rottnest and the Client camp
at Woodman Point. Both
were great fun in different
ways, and everyone enjoyed
the venues, food, and most of
all the stories and company.
These camps only run so well
because of both our volunteers and
the staff who volunteer over and
above their standard work hours.
I wish to say a big thank you to
Emma, Rosalind and Ashleen for
getting down and dirty with us at
Woodman Point. Without you the
camp would not have been a great
success.
The new Volunteer Coordinator’s
details will be circulated as soon as
the appointment has been made.
For any queries about camps
please contact Sandra Wallace, by
email sandra.wallace@mswa.org.au
or call 6454 3171.
Take care, farewell, and I hope to see
you all again one day.
DAWN BURKE
COORDINATOR OF VOLUNTEERS
AND CAMPS
26

DO YOU WANT A SAY IN MSWA’S
FUTURE DIRECTION?
MSWA is proud of the work we do to support Western Australians living with a neurological
condition. Our collective efforts enable us to continue to build state-of-the-art Services
Centres and high-support accommodation units across regional and metropolitan WA,
contribute significant funding to neurological research in Australia and internationally
year-on-year and, of course, provide ongoing services and support to you, our Clients.
As a Client of MSWA, you
have the right to Membership
at MSWA. MSWA Membership
gives you voting rights, which
means you have a say in
MSWA’s direction for a continued
successful future.
Each year at our Annual General
Meeting, all paid Memberships will
be able to vote on any issues raised.
If you’re interested in
MSWA Membership,
or would like more
information, you can visit
mswa.org.au/membership
or call 6454 3122
ANNUAL MSWA CLIENT FORUM –
SAVE THE DATE
A great opportunity to hear from specialists in their
fields and exciting MSWA-funded researchers.
Date: Wednesday, 15 September 2021 in Wembley.
More news next edition!
27

COUNSELLING
AN ARTICLE TO SELF
Sunday morning, there I was sitting with a friend at the local markets, enjoying the sunshine,
the music, and the coffee. I overheard a person sitting nearby say, “If you don’t make time for
your health you will have to make time for your illness.” It was a comment that really made
me pause. I know all about self-care, and I know a bit about illness, so why don’t I make
self-care a higher priority? With that on my mind, the opportunity to write this article was
presented. It was a sign – article to self!
I did a little more pondering, and a
bit of asking around. This is what I
came up with.
Self-care is the bottom line of taking
care of our health. We no longer live
in a tribal village and I, like many
others in WA, live in a different place
from my extended family – my
original tribe. Whilst I have a place
in my current tribe, I mostly lead
an isolationist lifestyle. This means
I am responsible, to the best of my
ability, for making sure I am ok.
In our society we cling to as much
independence as possible. It follows
then, that we also cling to being
responsible for ourselves. Or do we?
Robert Cooper asks the question,
“If we knew that the first twenty
minutes of the day set the tone for
the rest of the day, how would we
spend that twenty minutes?”
I asked myself ‘what makes me
want to get out of bed?’ Here is my
list: friends, exercise, the dog, the
garden, and my work, because I
enjoy what I do, and who I do it with.
We know that self-care is about
lowering our stress levels, but it is
also about enjoying our lives. So,
what are we doing when we lose
track of time? For some it is a good
laugh, sitting in the bush, being
with nature, feeling the connection,
being still and with self.
Anyone who is learning to meditate
will testify that being still, sitting
within your body, and being
observant of the self is not easy.
Jules Shakira from The Grief Centre
of Western Australia says, “Making
friends with whatever one is feeling
automatically causes a relaxation
of mind and body.” Or, if you like –
heart, mind, and body.
Acceptance of self, and knowing that
of yourself, you are enough, in this
moment and every other moment.
Aim to be soft, and witness rather
than exacerbate, the drama of life.
Come out of the story and back into
your body. Whatever state it is in, it
is yours. Trust in yourself. You know
what you need and what to do.
Reference:
Cooper, R. 2016. ‘The Neuroscience of an
Exceptional Life’, robertcooperphd.com
KATH BUDZINSKA
MSWA COUNSELLOR
28

I’m a big fan of self-care and over the years have figured out what works
well for me. Maybe something on this list will be useful for you too.
/ Scheduling a sleep in. Extra sleep is lovely, isn’t it!
/ Drinking a tonne of water.
/ I don’t do meditation or yoga, but I do breathing practice – I have
an app on my watch that tells me to stop and take a breath.
/ Essential oils are a big part of my day. I put drops of oil on lava
jewellery and take the time to do this ritual each morning.
SELF CARE IDEAS FROM
NICOLETTE MURPHY
MSWA CLIENT
/ Eating as cleanly as possible. You can speak to a dietician about
healthy eating and the elements of nutrition that are particularly
important.
/ Exercise – I love to do YouTube dance tutorials to get my steps up.
/ Relaxing in the evening with TV or a movie. I have my own TV space
separate from the kids’!
/ Keeping in touch with friends. I’m texting all the time.
/ Sitting in the sunshine, and of course going to the beach if you can.
/ Watching sunsets and taking the time to be outside and breathe.
BRAIN GAME
This autumn, we’re challenging you to one of our brain games – the Stroop Test.
Psychologist John Ridley Stroop
created the Stroop Test in 1935.
When you’re asked to read the
words, or name the colour of the
word, you really have to pause!
This might be because the
brain reads words faster than it
recognises colours, or because
colour recognition requires more
attention than reading words.
Or perhaps it’s just because we’re
more used to reading words than
noting their colours.
29

BRAND, MARKETING & SALES
WHAT’S ON
STEP UP FOR MSWA
Sunday, 20 June 2021
Step Up for MSWA challenges
you to climb 1,103 steps to the top
of Perth's tallest building - once,
twice, or even multiple times
(new for 2021)!
The big event takes place on
Sunday, 20 June, and there is even
a special Mini Climb challenge
(435 stairs) designed exclusively for
children (aged six and over).
Join us at Central Park this June
and challenge yourself to reach
new heights, whilst making a real
difference for people living with
neurological conditions.
Find out more at:
stepupformswa.org.au
CENTRAL PARK PLUNGE
Sunday, 14 November 2021
Are you ready to take the plunge
with #TeamMSWA this November?
It’s a unique opportunity to abseil
220 metres down Perth’s tallest
building, Central Park, while
making a real difference to the
thousands of people living with
neurological conditions here in
Western Australia.
Get together with family and friends
to conquer a once-in-a-lifetime
experience!
Join MSWA Client, Mauritz
Oberholzer, who had this to share
when we asked about his Central
Park Plunge experience:
“I enjoyed the 2020 Central Park
Plunge so much, that’s why I have
signed up to take the challenge
again. It is my way of contributing
and helping to make a difference.”
Are you ready to join Mauritz on
Sunday, 14 November?
For more information, or to
sign-up online today, visit
centralparkplunge.com.au or get
in touch with the MSWA Events
team today – events@mswa.org.
au or 08 6454 3131.
30

COVID-19 VACCINATION GUIDANCE
The rollout of the vaccination
program is currently underway in
Western Australia. According to the
Federal and State Government, the
most recent health advice indicates
that the AstraZeneca vaccinations
will only be given to people over the
age of 50 and Pfizer for those under
50 years of age; which is causing
delays in the planned roll out.
The vaccine is being distributed
in stages with a priority on certain
groups who would receive the
vaccine first. WA is currently in
phase 1b of the program, but due
to supply issues with Pfizer they
have now also included 2a (which is
people over 50). To find out whether
you are eligible for the vaccine, head
to: rollup.wa.gov.au
Globally, 89 vaccines are in clinical
trials, 27 of which are in the final
stages. Several across the globe
have been approved for use after
being deemed safe, effective, and
a likelihood to reduce the risk of
serious illness.
It is currently recommended that
everyone over the age of 18 years
should be vaccinated against
COVID-19. Your neurologist or GP
will have the most up-to-date
information regarding the safe
administration of the vaccines
for people living with – and those
on treatment for – different
neurological conditions.
MSWA is regularly updating
its COVID-19 information here:
mswa.org.au/an-update-aboutcoronavirus-covid-19
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 supports an MSWA
staff member has provided by:
/ Talking to the coordinator of
your services
/ Telephoning the Complaints
Liaison and Compliance
Coordinator, Michelle John,
on 6454 3146.
/ Emailing
feedback@mswa.org.au
/ Writing to Quality and
Compliance; Locked Bag 2,
BENTLEY DC 6983.
Please tell us:
/ What happened
/ When it happened
/ Who was involved
/ What you would like to see
occur as a result of sharing your
feedback
All feedback is reviewed, and
complaints investigated in a timely
manner with the team responsible
for the service.
Our goal is to achieve a positive
outcome for all people involved
and improve the quality of the care
and services provided. You will be
included in the process and the
outcomes shared with you.
Please note, you have the right to
have support from an advocate at
any point in a complaint process.
The Complaints Liaison and
Compliance Coordinator can help
you to access an advocacy service
if you wish.
31

WHATEVER YOUR NEURO,
WHATEVER YOUR NEEDS,
WE ARE READY
YOUR WAY.
Discover more about our safe and
flexible NDIS services available in
person, on the phone or online.
mswa.org.au/yourway