MSWA Bulletin Magazine Autumn 2021

Get to know your new President | Resilience: I get knocked down, but I get up again | MSWA’s $4m contribution to research | 36 years of Bulletin

Get to know your new President | Resilience: I get knocked down, but I get up again | MSWA’s $4m contribution to research | 36 years of Bulletin


You also want an ePaper? Increase the reach of your titles

YUMPU automatically turns print PDFs into web optimized ePapers that Google loves.

THE OFFICIAL MAGAZINE OF <strong>MSWA</strong><br />

<strong>Autumn</strong> <strong>2021</strong><br />

mswa.org.au<br />

INSIDE<br />

/ Get to know your new President<br />

/ Resilience: I get knocked down,<br />

but I get up again<br />

“It’s possible to rebuild your life<br />

from the ground up, like I did.”<br />

Rebecca Carbone on rehabilitation<br />

from brain tumour and stroke, p 20-22.<br />

/ <strong>MSWA</strong>’s $4m contribution<br />

to research<br />

/ 36 years of <strong>Bulletin</strong>



29 Parkhill Way 9365 4888<br />

Fax 9451 4453<br />

Freecall 1800 287 367<br />

See Health Team Dept contacts on this page<br />




Nicola Washington 9365 4840<br />


Carol Chong 9365 4873<br />

NDIS TEAM 9365 4824<br />


Wilson Outreach 9365 4830<br />

Beechboro Lodge 9377 7800<br />

Southside Outreach 9592 9202<br />

Albany Outreach 6154 5149<br />

Bunbury 6454 2800<br />




Sue Shapland 6454 3174<br />


Manager, Alimul Tasin 9385 9574<br />


Manager, Danuta Figurska 9356 2747<br />


Manager, Jo Nouwland 9331 5780<br />



Manager, Linda Kidd 9725 9209<br />



Manager, Chris Rush 6154 5120<br />


If you would like to comment on anything<br />

you read in this <strong>Bulletin</strong> please email<br />

bulletin@mswa.org.au or write to<br />

<strong>MSWA</strong>, Locked Bag 2, Bentley DC WA 6983<br />

For general feedback or complaints please<br />

contact Michelle John 6454 3173 or<br />

feedback@mswa.org.au<br />


Sue Shapland, Nicola Washington, Libby<br />

Cassidy, Jamey Claffey, Tracey Hockey and<br />

Nicolette Murphy.<br />


Geoff Hutchinson, Carol Chong, Misty<br />

Reinkowsky, Dajana Tesevic, Judith Clark,<br />

James Beckett and Crystal Chan.<br />

The Editorial Working Group welcomes<br />

unsolicited submissions.<br />

All articles are subject to a reviewing<br />

process. The views expressed are those<br />

of the authors and do not necessarily<br />

reflect the view of <strong>MSWA</strong>’s staff, advisors,<br />

directors or officers.<br />

Our neurological liaison nurses are usually the first point of contact after the<br />

neurologist’s diagnosis.<br />



Our team provides treatment interventions to develop and maintain mobility<br />

and function.<br />



Occupational Therapists enable Clients to continue their work and other interests<br />

for as long as possible through advice, aids and equipment.<br />

CRYSTAL CHAN, MANAGER: 9365 4804 OR OT DEPARTMENT: 9365 4888<br />


Our Speech Pathologists assess, diagnose and create individualised treatment<br />

programs for Clients who experience swallowing and/or communication difficulties.<br />

PAMELA WINDRAM, MANAGER: 6454 3140<br />


Dietitians are university-qualified nutrition experts who promote general health<br />

and disease prevention/management through dietary changes.<br />

PAMELA WINDRAM, MANAGER: 6454 3140<br />


Talking with a Counsellor creates a safe, respectful and confidential environment<br />

for you and those close to you to explore options, create change or gain<br />

understanding about your life.<br />




Social Welfare Officers assist Clients and their families to access services<br />

and supports to remain living independently at home. They specialise in case<br />

management, advocacy and sourcing funding options.<br />

KATH KNIGHTS, MANAGER: 9365 4835<br />


We provide long-term and time limited in-home supports including assistance<br />

with personal care for people with MS, to help them remain in their homes.<br />

Care and supports are provided through a combination of funding from the<br />

Department of Communities - Disability Services, and our own fundraising efforts.<br />

VICTORIA AMEY, MANAGER: 9365 4851<br />


Our experienced teams will provide you with personalised support right<br />

throughout your NDIS journey. From helping you to access the NDIS to working<br />

with you to get the most from your plan, our trained staff are here to help.<br />



<strong>MSWA</strong> provides separate recreation camps for Clients, carers, and families,<br />

primarily funded by Lotterywest, and for a nominal cost to participants.<br />

These camps provide a break from daily routines, and strengthen friendships<br />

and support networks.<br />



<strong>MSWA</strong> delivers all levels of Home Care Packages to eligible people with<br />

a neurological condition who are over 65. Services are delivered by staff<br />

specifically trained in home care for older Australians who are living with a<br />

neurological condition.<br />




Welcome to the autumn <strong>2021</strong> edition of <strong>Bulletin</strong>. We hope you enjoy the news, stories and<br />

service information we have brought to you this quarter.<br />


FROM THE DESK OF THE CEO. ...... 4<br />



OPTIONS ........................... 5<br />


MEMBER & CLIENT SERVICES ....... 6<br />


36 YEARS OF BULLETIN. .......... 8-9<br />

RESEARCH ROUND UP. ..........10-12<br />

RESEARCH IN FOCUS ...............13<br />


OTHERS IN THE FLU SEASON. ...... 14<br />


TO MORE PEOPLE ..................15<br />


NEW PRESIDENT ................ 16-17<br />


BUT I GET UP AGAIN ................18<br />

<strong>MSWA</strong> PROPERTY UPDATE. .........19<br />


FROM THE GROUND UP . ....... 20-22<br />

SKYDIVING INTO THE BLUE . ....... 23<br />


BEECHBORO ...................... 24<br />

DID YOU KNOW.... ................. 25<br />


PROGRAM. ........................ 26<br />

MEMBERSHIP AT <strong>MSWA</strong> . .......... 27<br />

AN ARTICLE TO SELF .............. 28<br />

BRAIN GAME . ..................... 29<br />

WHAT'S ON. ....................... 30<br />


GUIDANCE. .........................31<br />


AND COMPLIMENTS . ...............31<br />



OF THE CEO<br />


CEO<br />

Most meetings that I have with<br />

our President are easy. We are<br />

usually talking about strategy and<br />

performance.<br />

The most recent one, however,<br />

was difficult for me. This was the<br />

conversation where I advised Ros of<br />

my semi-retirement in general that,<br />

of course, included my resignation<br />

from <strong>MSWA</strong>. If I’m a halfway near<br />

decent CEO, it shouldn’t have come<br />

as a surprise. I’ve been preparing the<br />

pathway for our fine organisation<br />

for some time. But, even with the<br />

scene set and the foundations<br />

laid, being your CEO for nearly<br />

twenty years has been both an<br />

honour and a privilege, so that final<br />

announcement was hard to make.<br />

I won’t pass the baton until October,<br />

so that we can ensure a smooth and<br />

seamless transition and of course,<br />

plenty of time for proper goodbyes!<br />

As I sat down at my desk and<br />

wrote the resignation letter, I<br />

found myself thinking about the<br />

incredible journey that we have<br />

taken together. You’ll be relieved<br />

to know that I will not relive that<br />

journey today, or your casual<br />

read of <strong>Bulletin</strong> might require a<br />

deeper commitment!<br />

Instead, just a flavour will do. Day<br />

one was pretty unforgettable!<br />

Before driving home that evening<br />

I had been heckled in my first<br />

presentation and confronted by a<br />

few folk (quite a few in fact) who<br />

were keen to let me know about<br />

the decisions that I had to make.<br />

And all before lunch! As a man who<br />

had come from the relatively sterile<br />

environment of banking, I was<br />

struck by the passion of Members,<br />

staff and volunteers. I reckoned<br />

that if we could harness that for a<br />

common purpose, we would do<br />

some really good things.<br />

As over the years, I bathe in the<br />

reflected glory of our wonderful<br />

management, staff and Board. As I<br />

savour the wisdom and input of our<br />

Members, Clients and volunteers.<br />

As I appreciate the contributions of<br />

everyone, I feel reassured that we<br />

have done some really good things.<br />

Everyone will have their own<br />

highlights reel. For some, it<br />

might be the opening of our new<br />

accommodation centres and<br />

services hubs. For others, the day<br />

we became the largest funder of MS<br />

research in our nation’s history. Or<br />

perhaps the new physio program.<br />

Or record growth in care support. Or<br />

creation of family respite. Or maybe<br />

climbing the ladder to be one of the<br />

top three not-for-profits in Western<br />

Australia. The list will go on, and I<br />

don’t finish until October!<br />

My highlights reel includes<br />

those, but for me, I think<br />

it’s been the human<br />

moments that leave the<br />

strongest memories.<br />

The young couple, sitting in my<br />

office, discussing the new approach<br />

to their lives after the shock of<br />

her diagnosis. Initially a mood of<br />

despair, but ending with a positive<br />

sense of liberation.<br />

The woman who had been confined<br />

to a wheelchair, taking her first<br />

tentative steps after undertaking<br />

our intensive physio program. And<br />

her tears at that achievement. And<br />

the tears of our physiotherapists.<br />

Let no-one say that professional<br />

boundaries prevent human<br />

engagement!<br />

Plus, perhaps those light-hearted<br />

moments before the age of<br />

enlightenment. Seeing the smiles<br />

on the faces and listening to the<br />

laughter of ‘the crowd’, as our senior<br />

managers made fools of themselves<br />

at the Members’ Christmas party.<br />

Good sports one and all!<br />

As I head towards a sunset of<br />

semi-retirement, I reflect on our<br />

achievements, driven by the<br />

unflinching goal of making the lives<br />

of folk with neurological conditions<br />

just a little bit easier. All of that<br />

down to the broader team effort.<br />

Thank you.<br />

However, I don’t go until October, so<br />

plenty of time for proper goodbyes!<br />









“Put on your positive pants”<br />

Unknown.<br />

Well, I found this quote and it<br />

caught my eye and made me laugh;<br />

haven’t we all needed our positive<br />

pants at some stage over the last<br />

12 months!<br />

As COVID-19 continues to be a thorn<br />

in our side we can increasingly<br />

appreciate how Australia has<br />

thankfully been spared the dire<br />

circumstances we are seeing<br />

overseas. Thank goodness our<br />

Government and health authorities<br />

acted swiftly and continue to do<br />

so. The roll out of the COVID-19<br />

vaccination is proving a challenge<br />

due to reduced supplies arriving<br />

and then the concerns regarding<br />

the very rare adverse events<br />

experienced related to clotting. The<br />

Government is encouraging the<br />

vaccinations as they will help us get<br />

back to some normalcy, especially<br />

regarding travel.<br />

Of course, here in WA we have had<br />

the additional challenges of the<br />

bushfires and then a cyclone in April<br />

which showed us how vulnerable<br />

our telecommunications networks<br />

are! Amazing – you can chat with the<br />

astronauts in outer space but lose<br />

all internet and phone connections<br />

for 1 to 3 days here on earth.<br />

Great news, with another MS<br />

therapy being added to the list of<br />

PBS approved medications and I<br />

have been very interested to hear<br />

there are trials happening on a selfinjectable<br />

version of Tysabri, to be<br />

given monthly.<br />

I am really getting excited about the<br />

construction of our ten residential<br />

units in Albany; well under way now<br />

and we are hoping to move the first<br />

residents in during February 2022.<br />

As with Butler, a Services Centre<br />

will be co-located, providing our<br />

local Clients access to allied health<br />

services and giving our Albany<br />

Outreach a permanent place to call<br />

home! Stay tuned for more news<br />

as the build develops. I really enjoy<br />

visiting Albany and will have a great<br />

excuse to go more often now.<br />

As you may know, we are also in<br />

the design stages of our Montario<br />

Quarter supported accommodation<br />

facility – twenty units in a twostorey<br />

facility located in Shenton<br />

Park. This will be amazing; I can’t<br />

wait to see the design drawings<br />

and schematics!<br />

<strong>MSWA</strong> continues to increase our<br />

funding for research, $4 million<br />

this financial year! We are holding<br />

our Annual Client Forum on 15<br />

September where you can hear<br />

from some of our researchers and<br />

their exciting work, so save the<br />

date and keep an eye out for<br />

further details.<br />

Please consider having your flu<br />

vaccination as per our article in this<br />

<strong>Bulletin</strong>. Last year’s flu numbers<br />

were down due to increased uptake<br />

of the vaccination and reduced<br />

travel, but importantly the COVID-19<br />

precautions – like hand washing,<br />

social distancing and staying home<br />

if unwell – all helped reduce the risk<br />

and spread.<br />

Our teams are all busy with our<br />

preparations for re-registering as<br />

an NDIS provider and undertaking<br />

both self and external audits as part<br />

of our accreditation process.<br />

I hope you enjoy this <strong>Bulletin</strong><br />

and that you stay safe and<br />

well, especially across the<br />

coming winter months.<br />


MEMBER &<br />





Welcome to the autumn<br />

edition of <strong>Bulletin</strong>.<br />

As we move into autumn, we can<br />

start to enjoy the cooler weather<br />

with the wonderful sunny days we<br />

are lucky to enjoy in Perth.<br />

With the cooler weather comes the<br />

flu season and as always, <strong>MSWA</strong> has<br />

been busy providing the flu vaccine<br />

to our employees at our various<br />

locations.<br />

The COVID-19 vaccine remains a hot<br />

topic and the progression of the roll<br />

out that has certainly been slower in<br />

Australia than some other countries.<br />

As previously advised, please<br />

contact your GP or neurologist if<br />

you have any questions regarding<br />

the vaccine.<br />

Our new development<br />

in Albany continues to<br />

progress well and is receiving<br />

much excitement from<br />

the community. We look<br />

forward to opening this<br />

wonderful centre to service<br />

the community of the Great<br />

Southern region in 2022.<br />

Sunday, 11 April, was World<br />

Parkinson’s Day. Our Physiotherapy<br />

Manager, James Beckett is active<br />

in the promotion of strength and<br />

movement for people living with<br />

Parkinson’s. We would like to thank<br />

Client Charles Van Niekerk and<br />

his wife Nola, who held a fabulous<br />

community fundraiser which will<br />

enable us to purchase an additional<br />

Fightmaster boxing machine to<br />

assist people living with Parkinson’s.<br />

Wednesday, 12 May, was<br />

International Nurses Day. Our<br />

neurological liaison nurses continue<br />

to provide valuable support through<br />

the hospital clinics, working closely<br />

with neurologists to assist Clients.<br />

This can include supporting those<br />

newly diagnosed with multiple<br />

sclerosis, as well as ongoing<br />

support. Our nurses are also across<br />

the motor neurone disease clinics,<br />

providing support across various<br />

stages of diagnoses. In addition to<br />

clinics, our nursing team provides<br />

support and education out in<br />

the community.<br />

<strong>MSWA</strong> Client, Charles Van Niekerk<br />

demonstrating the benefits of the<br />

Fightmaster boxing machine.<br />

Our cover story for this edition charts<br />

Rebecca Carbone’s rehabilitation<br />

from brain tumour and stroke, at<br />

just 30 years of age. Her journey is<br />

testament to the difference that<br />

personal motivation, combined<br />

with receiving the right type of<br />

support, can make to those living<br />

with a neurological condition.<br />


The new Minister for the National<br />

Disability Insurance Scheme is<br />

Linda Reynolds, who takes over<br />

from Stuart Roberts.<br />

The new Western Australian<br />

Minister for Disability is Don Punch,<br />

who takes over from Stephen<br />

Dawson.<br />

Linda Reynolds has put a hold<br />

on the implementation of the<br />

Independent Assessments that<br />

were due to be introduced for<br />

NDIS participants in <strong>2021</strong>. The<br />

Independent Assessments will not<br />

be rolled out until a second pilot<br />

has been completed and further<br />

consultation has been conducted<br />

with key stakeholders.<br />

This is welcome news due to<br />

the uncertainty of how these<br />

Assessments would be conducted<br />

and how they would benefit NDIS<br />

participants.<br />

If you have any questions<br />

regarding your NDIS plan,<br />

please do not hesitate to contact<br />

ndisenquiries@mswa.org.au. Our<br />

team is always ready to help you<br />

navigate any problem or question<br />

you may have.<br />



With our regular Guest Editor, Ros Harman, stepping into her role as the new <strong>MSWA</strong> President of<br />

the Board, we have adapted the way content is devised and articles are written for your <strong>Bulletin</strong>.<br />

Our new Editorial Working Group will meet quarterly to plan and create each edition of <strong>Bulletin</strong>. The team consists<br />

of the General Manager Strategic Supports and Residential Options, the General Manager Member & Client<br />

Services, two members of the Brand & Communications team, and two <strong>MSWA</strong> Clients living with different<br />

neurological conditions.<br />

In this edition, we are delighted to introduce you to our first two Client representatives, who will have a one year<br />

tenure on the Editorial Working Group.<br />


My name is Tracey Hockey, I am 56 years old and in April<br />

2016 I had a stroke. The stroke I had was caused by sleep<br />

apnoea and, without knowing it, I had been having mini<br />

strokes. This caused me to awaken with a headache<br />

every night for six weeks prior to the big stroke that has<br />

changed my life forever.<br />

Up until that point I had been the one in my family that<br />

everyone came to for support and then it was me who<br />

needed support. It is not an easy thing to ask, look, or<br />

reach out for support when you are struggling to find<br />

a new you. I'm not sure how it happened but amidst<br />

finding my way I had the help of a lovely lady at <strong>MSWA</strong><br />

who guided me to find the support I absolutely needed.<br />

In my life I have always gone with the flow and stepped<br />

into doors when they open. For instance, <strong>MSWA</strong> put<br />

me onto a wonderful trial at ECU called the Mindpod<br />

Exoskeleton Trial. It was through this amazing trial<br />

that I met the lovely lady who runs <strong>MSWA</strong>’s Brand &<br />

Communications team. Her energy made me smile and<br />

after listening to her vision for the Editorial Working<br />

Group I felt that another door had opened. There was a<br />

feeling that I have personal experience that as a Client<br />

of <strong>MSWA</strong> I can share. So I have stepped into this new<br />

journey and feel so blessed to be able to pay it forward to<br />

a rehabilitation provider that has given me the chance<br />

to be the best I can be.<br />


Hi my name is Nicolette. I was diagnosed with MS<br />

in 2010 and I live in the north of Perth with my two<br />

teenage boys.<br />

I was born in England and my parents are from Mauritius.<br />

My boys and I moved to Perth from London in 2005.<br />

We have a very full lifestyle and receive a lot of support<br />

from <strong>MSWA</strong>, which we are very grateful for. For a<br />

London girl to have ended up in WA, where the sun<br />

always shines and I have access to so much help, I truly<br />

believe I’m in the right place at the right time, and that<br />

anything is possible.<br />

I feel very privileged to be involved in the Editorial<br />

Working Group. It is an opportunity to share my<br />

experience and be a part of information distributed in<br />

written form to fellow Clients and friends. It’s a wonderful<br />

community to be a part of.<br />



Did you know that <strong>Bulletin</strong> magazine has been in publication since 1985?<br />

It began as <strong>Bulletin</strong> MS, ‘a monthly circular for the Society and its members, by members, their helpers<br />

and associates’.<br />

36 years later, <strong>MSWA</strong>’s <strong>Bulletin</strong> reflects a much larger, adapted and more diverse organisation, but the<br />

publication’s ethos is the same: it’s for you, and it’s by you.<br />

The 1985 editorial committee consisted of Lorraine Simons, Cal Dagnall, Colleen Fletcher, Alan Seymour and<br />

Greg Brotherson. Remarkably, Greg continued to edit the magazine for 36 years, only recently stepping<br />

down for health reasons.<br />

For the history buffs among you, we have delved into the archives to bring you one of the earliest<br />

editions of <strong>Bulletin</strong> for your reading pleasure. Fascinatingly, it documents the approval for the introduction<br />

of MRI scanners in Australia – a pivotal moment in history for the diagnosis and management of<br />

neurological conditions.<br />

You will also enjoy Greg Brotherson’s regular column ‘From the Video Shop’.<br />

And we wonder what today’s young Readathon winners would make of a cassette player as their prize?



ROUND UP<br />





Read more at: msra.org.au<br />

New Links Between B Cells and<br />

EBV Infections in Women with MS<br />

WA researchers investigated B<br />

cells, antibodies, and signs of EBV<br />

infection (glandular fever virus) in<br />

the blood. They compared people<br />

with MS experiencing a relapse,<br />

and people with clinically isolated<br />

syndrome (CIS) before an MS<br />

diagnosis, to people without MS.<br />

The research revealed for the first<br />

time, that levels of CD32b, a receptor<br />

molecule on the surface of B cells,<br />

are lower on particular types of B<br />

cells in people with MS and CIS when<br />

compared to healthy controls, but<br />

only in women. Thus, it is possible<br />

that B cells in women with MS are<br />

less able to switch off excessive<br />

responses, and/or less able to switch<br />

off autoimmune responses.<br />

They also found this phenomenon<br />

in women with MS was associated<br />

with higher levels of a special B cell<br />

activating factor in the blood, with<br />

tests suggesting that the previously<br />

inactive EBV in the body was<br />

reactivated. This was particularly<br />

evident in those with CIS.<br />

Women are almost three times<br />

more likely to develop MS than<br />

men. The CD32b molecule prevents<br />

autoimmune disease in laboratory<br />

models. The discovery that the<br />

CD32b molecule is reduced in<br />

women who have CIS and MS opens<br />

new avenues to understanding<br />

the autoimmune process in MS<br />

more generally.<br />

Discovering unique differences<br />

in the immune system of women<br />

with MS may also help us to<br />

understand why women are more<br />

susceptible to developing MS. As<br />

EBV is an important risk factor<br />

for MS and possibly a driver of the<br />

MS disease process, further work<br />

is also warranted to understand<br />

how the CD32b molecule is related<br />

to the control of EBV infection<br />

in MS, particularly early in the<br />

disease process.<br />

MS Heat and Fatigue: Does it Come<br />

Down to Sweating?<br />

Heat fatigue is a very common<br />

symptom of MS, which causes<br />

feelings of exhaustion and<br />

worsening of other symptoms.<br />

Australian researchers try and pin<br />

down the causes of heat fatigue<br />

in people with MS. Researchers<br />

explore whether people with MS<br />

have any changes in their ability to<br />

sweat and whether this influences<br />

their heat fatigue.<br />

Previous observations suggested<br />

that people with MS are less able<br />

to regulate their temperature due<br />

to an impaired sweating capacity,<br />

ie, delayed or reduced sweating.<br />

This makes their body temperature<br />

rise more quickly, possibly due<br />

to a change in sensitivity of the<br />

damaged neurons that detect heat.<br />

The current study, led by Dr Ollie<br />

Jay from the University of Sydney,<br />

aimed to demonstrate whether this<br />

impaired sweating response during<br />

exercise was enough to raise the<br />

core temperature of people with<br />

MS. The study also investigated if<br />

it resulted in a reduced capacity of<br />

people with MS to perform exercise,<br />

compared to those without MS.<br />






The researchers found the ability of<br />

people with MS to complete exercise<br />

in either warm (30°C) or hot (35°C)<br />

environments was compromised,<br />

compared to those without MS. The<br />

onset of sweating in people with MS<br />

was delayed in both environments,<br />

however, reductions were only<br />

observed on the forearm, and not<br />

the upper back. Nevertheless,<br />

similar rises in rectal temperatures<br />

were observed between the MS and<br />

non-MS group throughout 60<br />

minutes of exercise in both the<br />

warm and hot environments. As the<br />

heat affected non-MS people too,<br />

this suggests that any impairments<br />

in regulating body temperature in<br />

people with MS are not sufficient<br />

alone to accelerate body heating<br />

during exercise.<br />

Given the findings, it’s suggested<br />

that future research should focus on<br />

practical and economical cooling<br />

strategies to overcome heatrelated<br />

fatigue and the onset of MS<br />

symptoms during physical activity<br />

and/or heat exposure in warm and<br />

hot environments.<br />


Read more at: shakeitup.org.au<br />

Targeting gut bacteria to treat<br />

Parkinson’s symptoms<br />

A clinical trial looking at constipation<br />

and gut dysfunction is now under<br />

way at the University of Queensland.<br />

The trial will determine if a targeted<br />

treatment can restore specific<br />

beneficial gut bacteria that are known<br />

to be substantially reduced in people<br />

with Parkinson’s. The latest scientific<br />

thinking suggests a strong link<br />

between gut bacteria and Parkinson’s<br />

– particularly around the harmful<br />

role that altered gut bacteria and<br />

their metabolic products may play in<br />

contributing to the disease process.<br />

A significant issue for people<br />

with Parkinson’s is a slowed<br />

digestive tract movement, leading<br />

to constipation – adding to the<br />

challenge of having the disease, and<br />

the negative impact on a person’s<br />

quality of life.<br />

The Queensland Drug Repurposing<br />

Initiative received $1.5 million in<br />

Advance Queensland funding to<br />

build infrastructure and research<br />

capacity to accelerate clinical trials<br />

for neurological diseases such as<br />

Parkinson’s, using approaches such<br />

as drug repurposing.<br />

“Our first clinical trial will use a<br />

proprietary bacterial substrate<br />

developed by Anagenix Ltd, which<br />

we believe can restore specific<br />

populations of beneficial bacteria<br />

that are progressively reduced<br />

in people Parkinson’s as the<br />

disease progresses.<br />

“While the focus of this trial will be<br />

on constipation and gut function,<br />

the research we perform on the<br />

patient samples from this study,<br />

will provide us with valuable<br />

insights into the potential of this<br />

approach to reduce inflammation<br />

and other pathological processes<br />

associated with Parkinson’s disease<br />

progression. This will tell us if similar<br />

treatment strategies targeting gut<br />

bacteria may have the potential<br />

to slow or halt the progression of<br />

Parkinson’s, which is the ultimate<br />

goal of our research program”<br />

Dr Richard Gordon, QDRI Research<br />

Lead, said.<br />


Read more at:<br />

strokefoundation.org.au<br />

Australia destined for world’s first<br />

stroke air ambulance<br />

Australia is set to save lives and<br />

lead the way internationally with<br />

the latest innovation in stroke<br />

treatment and care – a stroke air<br />

ambulance. The Stroke Foundation<br />

will be a primary partner in The<br />

Stroke Golden Hour research<br />

project awarded $40 million under<br />

Stage Two of the Frontier Health<br />

and Medical Research Initiative.<br />

The Stroke Golden Hour project is<br />

developing lightweight portable<br />

brain scanners, meaning they can<br />

be put into ambulances on the<br />

roads and in the air. This will allow<br />

rapid diagnosis and treatment to<br />

those who have a stroke, saving<br />

lives and reducing disability.<br />

Australians in regional and rural<br />

areas have been denied the highquality<br />

stroke treatment provided<br />

to their metropolitan counterparts.<br />

This announcement is an exciting<br />

step forward in ending that.<br />

Australia’s broad geography will no<br />

longer be a barrier to time-critical<br />

stroke treatment.<br />

More than 27,000 Australians will<br />

experience a first time stroke this<br />

year. Rural and regional Australians<br />

are 17 percent more likely to have<br />

a stroke and are more likely to<br />

have a poorer outcome due to<br />

limited access to stroke specialists,<br />

treatments, and care.<br />



Ms McGowan, CEO of the Stroke<br />

Foundation, said when treating stroke,<br />

“time is brain”. Treatment needs to be<br />

offered within the first few hours and<br />

preferably within the first ‘Golden<br />

Hour’. In a country the size of Australia,<br />

this has been a problem.<br />

This research project is led by<br />

co-chief investigators Professors<br />

Geoffrey Donnan and Stephen<br />

Davis at the University of Melbourne<br />

and the Royal Melbourne Hospital<br />

(RMH) and brings together experts<br />

from more than 30 of Australia’s<br />

leading health and academic<br />

institutes and charities as The<br />

Australian Stroke Alliance. The aim<br />

is to reduce mortality and narrow<br />

the urban, rural, and Indigenous<br />

healthcare gaps. Professor Donnan<br />

said this program has the scope to<br />

transform stroke treatment around<br />

the world.<br />

The announcement by the Federal<br />

Government, follows an initial $1<br />

million grant, awarded in 2019<br />

through the Medical Research<br />

Future Fund to kickstart the project.<br />

$4 million has been provided by<br />

philanthropic partners.<br />


Read more at: fightmnd.org.au<br />

Pre-Clinical Development of SOD1<br />

Genetic Therapy in Sporadic MND<br />

WA Murdoch University based<br />

researchers, Prof Steve Wilton, Prof<br />

Anthony Akkari and Dr Loren Flynn,<br />

are conducting MND research;<br />

one area focussing on identifying<br />

genetic markers that may explain<br />

the missing heritability of MND, and<br />

could help to predict age of onset<br />

and duration of disease.<br />

In discovering such markers,<br />

they will co-develop these with<br />

our antisense therapy pipeline to<br />

identify the best drug for the right<br />

patients. The researchers have<br />

also identified genetic markers<br />

that appear to play an important<br />

role in sporadic MND and predict<br />

these markers could contribute to<br />

understanding patient response<br />

in clinical trials. They are hopeful their<br />

discovery of the SOD1 suppression<br />

molecule will have broad implications<br />

for treating sporadic MND.<br />

The research team is aiming to<br />

advance their exciting new genetic<br />

drug so that it is ready to test in<br />

MND clinical trials.<br />

Recently, the team found that<br />

their lead drug, a SOD1-targeted<br />

antisense oligomer, delays the<br />

onset and slows progression of<br />

MND-like symptoms in a hereditary<br />

preclinical model of MND.<br />


Read more at: mndaust.asn.au<br />

Novel therapeutic strategies<br />

targeting TDP-43 in Motor Neurone<br />

Disease; A/Prof Yazi Ke, Macquarie<br />

University, NSW<br />

The research team has discovered<br />

a new, previously unidentified<br />

protein complex that appears to be<br />

involved in motor neurone disease<br />

(MND) which contributes to disease<br />

processes such as nerve cell death.<br />

Their proposal has three main aims:<br />

firstly, to understand how different<br />

components of this protein complex<br />

contribute to its function; secondly,<br />

to study this protein complex in an<br />

established MND mouse model to<br />

understand its disease-relevance;<br />

and finally, to harness the knowledge<br />

of this protein complex in the<br />

development of two highly feasible<br />

therapeutic approaches in a preclinical<br />

setting. It is hoped this project<br />

could identify new therapies for MND.<br />


Ofatumumab (Kesimpta®) is a new therapy for relapsing MS approved by the TGA and<br />

recommended for subsidy through PBS by PBAC.<br />

Ofatumumab is an antibody<br />

against a protein called CD20 found<br />

on the surface of certain types of<br />

immune cells called B cells. It is<br />

similar to another MS medication<br />

ocrelizumab (Ocrevus), which also<br />

targets cells with CD20 protein on<br />

their surface.<br />

Self-administered once per month<br />

via injection, ofatumumab uses a<br />

Sensoready Pen which autoinjects.<br />

Ofatumumab was approved by the<br />

Therapeutic Goods Administration<br />

(TGA) on 4 March <strong>2021</strong> for the<br />

treatment of adults with the<br />

relapsing forms of MS in Australia.<br />

An application was made to<br />

the Pharmaceutical Benefits<br />

Advisory Committee (PBAC) to<br />

have ofatumumab listed on the<br />

Pharmaceutical Benefits Scheme<br />

(PBS). On 28 April <strong>2021</strong>, the PBAC<br />

provided their recommendation for<br />

ofatumumab to be subsidised. This<br />

positive endorsement will now be<br />

passed to the Federal Government<br />

for final approval. Once this<br />

happens, ofatumumab will become<br />

an affordable treatment for people<br />

with MS.<br />

We recommend that people living<br />

with MS speak to their neurologist<br />

about what treatment best suits<br />

their individual circumstances.<br />



Here, we provide an insight into the research projects we are funding in Western Australia. In<br />

this edition, we look at our overall record-breaking contribution this year.<br />


OF $4M<br />

<strong>MSWA</strong> is proud to be Western<br />

Australia’s leading contributor to<br />

neurological research. Funding this<br />

work is a priority for <strong>MSWA</strong> because<br />

it creates real outcomes for people<br />

living with a neurological condition,<br />

by making new medical discoveries.<br />

In early <strong>2021</strong>, we announced our $4<br />

million contribution to research. This<br />

is a new record that highlights our<br />

commitment to research and how<br />

much we value our community of<br />

fundraisers and supporters who<br />

help make all of this possible.<br />

<strong>MSWA</strong> is currently supporting<br />

research projects being conducted<br />

by the Perron Institute, Edith Cowan<br />

University, Curtin University, Telethon<br />

Kids Institute, MS Research Australia<br />

(MSRA) and the International<br />

Progressive MS Alliance.<br />


We are excited to be funding<br />

Neuroplasticity Research led by<br />

the Perron Institute’s Associate<br />

Professor Jenny Rodger. The study is<br />

investigating the ability of the brain<br />

to change and rewire, or modify<br />

damaged neural connections using<br />

non-invasive brain stimulation.<br />

Senior Research Fellow Dr Lucinda<br />

Black is leading a team at Curtin<br />

University who are examining<br />

Dietary Implications in MS<br />

Research. The research involves the<br />

analysis of various dietary factors,<br />

patterns of food, nutrients intake,<br />

and their link to the risk of MS<br />

and disease progression. To date,<br />

research has been undertaken in red<br />

meat, fatty omega-3 acids, vitamin<br />

D and ultra-processed foods.<br />

Translating Research into Practice<br />

is a probe led by Executive Dean<br />

of Medical and Health Sciences<br />

from Edith Cowan University,<br />

Professor Moira Sim. The research<br />

is looking into several therapeutic<br />

interventions and who they will<br />

most benefit – specifically for<br />

people living with a neurological<br />

condition. Research is currently<br />

being conducted to see the effect of<br />

light therapy glasses on fatigue and<br />

daytime sleepiness. Additionally,<br />

the study is using a virtual reality<br />

video game with an exoskeleton<br />

apparatus to improve upper<br />

limb mobility.<br />

Finally, a study housed in the<br />

Telethon Kids Institute, is trying<br />

to understand the possibility of<br />

delaying the development of MS<br />

in high-risk individuals. The UVB<br />

Treatment Research is driven by<br />

Professor Prue Hart, as the team<br />

investigates the causal links for<br />

changes to blood cells associated<br />

with the worsening of MS.<br />

<strong>MSWA</strong> also allocates significant<br />

funding to MSRA (Multiple Sclerosis<br />

Research Australia) which is then<br />

allocated to various Australian MS<br />

research projects. A nominated<br />

portion of this is also used to support<br />

the International Progressive MS<br />

Alliance – a global collaboration<br />

working towards finding a<br />

greater understanding and better<br />

treatments for Progressive MS.<br />


For more information about<br />

<strong>MSWA</strong>’s commitment to research<br />

and research projects we are<br />

currently funding, visit our website:<br />

https://mswa.org.au/news-research/<br />

commitment-to-research.<br />






Each winter brings the risk of<br />

influenza and annual flu vaccinations<br />

are now being offered. The Australian<br />

Government recommends everyone<br />

over the age of six months has the<br />

flu vaccination every year, especially<br />

those at risk – the young, the elderly<br />

and those with pre-existing illnesses.<br />

Our Clients often ask whether they<br />

should have the vaccination.<br />

People with neurological or other<br />

chronic conditions are advised to<br />

discuss any concerns with their<br />

treating neurologist or GP as soon<br />

as possible; it is essential to have the<br />

vaccination earlier rather than later to<br />

reduce the risk of contracting the flu.<br />

Our medical advisor Professor<br />

Bill Carroll offers the following<br />

comment for people with MS:<br />

"There is no evidence that these<br />

vaccinations make MS worse<br />

or cause a relapse. Should a<br />

relapse occur around the time<br />

of flu vaccination it is thought<br />

to be coincidental. Occasionally<br />

people with MS can have a brief<br />

exacerbation of existing MS<br />

symptoms, due to vaccination<br />

associated fever or fatigue, but this<br />

is not worsening of the MS.<br />





People with MS are advised to<br />

discuss any concerns with their<br />

treating neurologist or physician as<br />

soon as possible as it is essential to<br />

have the vaccination earlier rather<br />

than later to reduce the risk of<br />

Getting vaccinated helps protect<br />

both you and those around you. It’s<br />

particularly important to protect<br />

vulnerable people in the community<br />

who can’t be vaccinated, such<br />

as babies who are younger than<br />

contracting the flu".<br />

six months and adults with<br />

It’s difficult to predict who will<br />

low immunity.<br />

catch the flu, or who will become<br />

seriously ill from it. The flu can<br />

require someone to be hospitalised<br />

and can even be fatal, especially in<br />

the elderly and children under two.<br />

The Government funded Health Direct<br />

(healthdirect.gov.au/colds-and-flu-treatments)<br />

is packed with health information and advice.<br />

You can call a Health Direct RN 24/7<br />

for free advice: 1800 022 222.<br />





Late in 2019, I had the pleasure of travelling to Albany to take part in several National Disability<br />

Insurance Scheme (NDIS) Information Sessions supporting the upcoming NDIS roll-out across<br />

the Great Southern region.<br />

At one session, we were joined<br />

by <strong>MSWA</strong> Clients, local GPs, other<br />

service providers, and one lady<br />

who found out about the event<br />

from someone in the local pub.<br />

It was this lady who provided the<br />

lasting memory for me, as when<br />

I spoke with her she disclosed she<br />

had POEMS syndrome, a condition<br />

so rare that she is one of only five<br />

across Australia with the condition.<br />

The reason this lady’s story and<br />

her condition has stuck with me<br />

18 months later was not because<br />

she was incredibly nice (she was)<br />

rather it was because her story and<br />

the story of thousands of other<br />

participants nationwide is one of<br />

the success stories of the NDIS. It<br />

was because she may be one of the<br />

212,504 participants (18,355 in WA)<br />

who now are receiving support for<br />

the first time under the NDIS.<br />

It’s easy to find maddening,<br />

befuddling and outrageous stories<br />

about the NDIS and the experiences<br />

of some of its participants. They<br />

are in the media almost every day.<br />

However, what is discussed less<br />

often is the impact the Scheme<br />

is having on so many people who<br />

now have access to services that<br />

would not have been possible when<br />

funding was tied to organisations.<br />

What is often missed in the rush<br />

to declare the NDIS a failure<br />

is that the Scheme is the first<br />

opportunity for many of those<br />

with rare conditions to have<br />

access to ongoing care without<br />

out-of-pocket expenses or<br />

hospital stays.<br />

This group is not a small number.<br />

According to the latest Quarterly<br />

Report, 52% of active participants<br />

in WA are receiving support for the<br />

first time. This means that over half<br />

of the participants on the Scheme<br />

now have choice, control, and<br />

access to services helping them<br />

to reach their personal goals. This<br />

greater access for rarer conditions<br />

is also being seen at <strong>MSWA</strong>. We<br />

now have over 160 Clients classified<br />

within smaller cohort conditions<br />

enjoying the same access to <strong>MSWA</strong><br />

services as everyone else.<br />

The NDIS as an idea is a remarkable<br />

one that has the potential to<br />

positively impact hundreds of<br />

thousands of Australians. While the<br />

NDIS as a reality has not reached<br />

that potential yet, we should<br />

recognise what the Scheme has<br />

achieved and all those it has helped<br />

in the short time since its inception.<br />




"I’ve had a really positive experience with the NDIS. Without NDIS<br />

support I wouldn't have the services of an amazing provider like<br />

<strong>MSWA</strong>, which has set me up to succeed in every aspect of living<br />

with the lasting effects of stroke. The NDIS arrange an assessment<br />

each year and it amazes me that out of an interview comes so many<br />

more wonderful opportunities. Without these opportunities I believe<br />

that I wouldn't be working three days a week, be able to get out into<br />

the community, or see my family and friends."<br />


<strong>MSWA</strong> CLIENT<br />



YOUR NEW<br />


Recently, <strong>MSWA</strong> was pleased to announce Ros Harman as the new President of the Board.<br />

To many readers, Ros needs no<br />

introduction. As well as having been an<br />

<strong>MSWA</strong> Client for 32 years and a Board<br />

member for 16 years, Ros has been a<br />

regular and much-loved contributor to<br />

<strong>Bulletin</strong> since 2000.<br />

Ros is passionate about writing and<br />

public speaking, and many <strong>MSWA</strong><br />

Clients will have followed her honest<br />

and informative articles about living<br />

with a neurological condition.<br />

Ros’ journey with <strong>MSWA</strong> began in 1988,<br />

just after her 26th birthday, when she<br />

was diagnosed with multiple sclerosis.<br />

After noticing herself feeling<br />

uncoordinated and clumsy when<br />

playing basketball and walking to the<br />

high school where she worked as an<br />

English teacher, Ros found herself in<br />

a neurologist’s clinic. MRI machines<br />

had just been made available as a<br />

diagnostic tool for MS, and Ros was<br />

one of the first people in Perth to be<br />

scanned for MS lesions.<br />

“The diagnosis was a big shock,” says<br />

Ros. “I didn’t really know what MS was,<br />

but my neurologist recommended I<br />

contact the MS Society immediately,<br />

which I did.”<br />

One of the first people she met at the<br />

MS Society (now of course known as<br />

<strong>MSWA</strong>) was Greg Brotherson, a name<br />

many readers will also be familiar with,<br />

having been editor of this magazine<br />

for 36 years. “He found out I was an<br />

English teacher and encouraged me to<br />

start writing articles for <strong>Bulletin</strong>,” says<br />

Ros. (Her first contribution to <strong>Bulletin</strong><br />

is pictured right).<br />

At this time in her life, Ros was married,<br />

with no children, but having a baby<br />

was very much on her agenda. She<br />

read everything she could about the<br />

subject and decided to go ahead.<br />

Her daughter Eleni’s birth went well.<br />

“I relied on the support of the MS<br />

Society a lot at this time,” she recalls.<br />

“Because I had relapsing-remitting<br />

MS to start with, each bout would see<br />

me end up in hospital on intravenous<br />

high-dose steroids. There was no other<br />

medication available yet.”<br />

When the <strong>MSWA</strong> Board were looking<br />

for nominations in 2004, Greg<br />

Brotherson put Ros’ name forward.<br />

“Becoming a Board member enabled<br />

me to learn a lot about the work <strong>MSWA</strong><br />

does. I’ve seen the organisation grow<br />

and change over the years – to now<br />

supporting all neurological conditions,<br />

and building many new facilities.<br />

“I’ve stood by and admired how <strong>MSWA</strong><br />

has kept going strong at times when<br />

a lot of other organisations have<br />

struggled. This, of course, is largely due<br />

to Marcus being at the helm.”<br />

Of course, Ros’ passion and insight are<br />

informed by the fact that she herself is<br />

an <strong>MSWA</strong> Client.<br />

“My ability to stay independent is<br />

largely due to <strong>MSWA</strong>,” she explains.<br />

“I attend regular physiotherapy and I<br />

have had invaluable advice from the<br />

OTs and nurses over the years. I drive<br />

using hand controls, and my car has<br />

a wheelchair hoist. When I built my<br />

house, I had input from the OTs, so my<br />

bathroom is fabulous! I’m a big believer<br />

in grab rails. The more the better!”<br />

Now, as President of the Board, Ros’<br />

ambition is to help the organisation<br />

continue the good work of building<br />

new facilities, supporting people who<br />

need help, providing services, and<br />

supporting research.<br />

“We have plans to build more facilities.<br />

I think that’s an important focus –<br />

there are lots of people out there with<br />

neurological conditions who will need<br />

care and support in the future. We are<br />

lucky to be in the financial position to<br />

do that, thanks to the generosity of the<br />

people who support our fundraising<br />

activities like the lottery campaigns<br />

and events.<br />


“Of course, we will also be continuing to<br />

support research as much as possible.<br />

The right treatment can make such<br />

a difference. When I was diagnosed,<br />

there was no medication, only steroids.<br />

It’s only since the late 1990s that<br />

medication was introduced for MS<br />

that really made a difference to newly<br />

diagnosed people. I suspect if they<br />

were around when I was diagnosed, I’d<br />

still be walking.<br />

“I’m following with interest the research<br />

projects <strong>MSWA</strong> is currently funding in<br />

WA that will have implications for MND,<br />

brain injury, Parkinson’s, Huntington’s<br />

and stroke.”<br />

Ros is also passionate about<br />

<strong>MSWA</strong>’s contribution to<br />

international research.<br />

“It’s so important for the<br />

global community to work<br />

together to find solutions.”<br />

Left: MS <strong>Bulletin</strong>,<br />

July 2000, pp13-14.<br />





How many of us can relate to this? It sums up resilience in a nutshell (and gives you a daylong<br />

earworm). Certain ideas take root in popular consciousness, like mindfulness, and<br />

resilience is another one – researched for decades and especially discussed last year during<br />

months-long COVID-19 lockdowns. We want it and we need it – but what exactly is resilience?<br />

Research tells us that most people<br />

are resilient – you don’t have<br />

to be extraordinary to get up<br />

again. Resilience is the capacity<br />

of people to handle adversity<br />

with acceptance, adaptiveness,<br />

optimism and grit. Challenges<br />

are guaranteed in life, and from<br />

childhood onwards, we can learn to<br />

build our inner resources for coping<br />

well. A resilient person is not spared<br />

the bad times, but can respond to<br />

them in ways that transform them<br />

into opportunities for growth.<br />

Resilience is made up of our<br />

psychological attitudes (such as<br />

holding onto a ‘realistic optimism’),<br />

our emotional self-awareness<br />

(knowing our personality, regulating<br />

our feelings), our constructive<br />

behaviours (reaching out for help,<br />

learning new skills) and our spiritual<br />

meaning-making (finding answers<br />

for ourselves about how we can<br />

get through and find positives in<br />

our challenges).<br />

If we break it down, resilience<br />

includes:<br />

/ Flexibility and adaptiveness<br />

/ Positive thinking style<br />

/ Problem-solving skills<br />

/ Connection with external support<br />

/ Communication skills<br />

/ Perseverance<br />

/ Trust and confidence in oneself<br />

We can see that these qualities<br />

are ones we are familiar with<br />

in ourselves and others – one<br />

researcher calls resilience ‘ordinary<br />

magic’. Parents, schools, friendship<br />

networks, spiritual communities,<br />

sports and hobby groups, even<br />

books and films, can all provide<br />

contexts and role models for<br />

learning these skills and attitudes<br />

from childhood onwards. In<br />

this respect, life itself is our<br />

resilience coach.<br />

Studies show that secure<br />

attachments to one or both parents,<br />

as well as to at least one close friend<br />

in adolescence, predict a higher<br />

level of resilience in young adults.<br />

Protective factors also play a part,<br />

such as:<br />

/ Self esteem<br />

/ The ability to plan ahead<br />

for challenges<br />

/ Adaptive coping skills<br />

/ Social support<br />

/ Emotional intelligence<br />

We talk about bad times being<br />

‘character-building’ for a reason!<br />

Studies also show that resilient<br />

people ‘bounce back’ from negative<br />

events or circumstances more<br />

quickly than others, even finding<br />

new opportunities to contribute<br />

to society as a result of what has<br />

been learned – and this includes<br />

those who are living with chronic<br />

illnesses. Former Australian rules<br />

footballer Neale Daniher, who<br />

lives with MND, is one example.<br />

Think about your journey with<br />

your condition – how do you think<br />

your personality has developed in<br />

reaction to the obstacles, changes<br />

and difficult emotions you have<br />

experienced?<br />

Resilience is “the core strength<br />

you use to lift the load of life,”<br />

according to Dr Amit Sood from<br />

the Global Center for Resilience<br />

and Wellbeing. To discuss and learn<br />

more structured ways of developing<br />

resilience, you can contact the<br />

<strong>MSWA</strong> Counselling Service.<br />


<strong>MSWA</strong> COUNSELLOR<br />


<strong>MSWA</strong> PROPERTY UPDATE<br />

<strong>MSWA</strong> officially launches the development a $7m dual purpose facility in Albany.<br />

In February, local <strong>MSWA</strong> Albany<br />

Clients and staff were joined by our<br />

CEO Marcus Stafford and members<br />

of the Senior Management team to<br />

officially launch the development of<br />

our latest project – a new $7M High-<br />

Support Accommodation Facility<br />

and Services Centre in Albany.<br />

From early 2022, the development,<br />

which is now well under way, will be<br />

the <strong>MSWA</strong> centre for people living<br />

with a neurological condition in the<br />

Great Southern.<br />

“<strong>MSWA</strong> has been providing services<br />

and supports to Albany locals living<br />

with a neurological condition for<br />

over two decades. We are looking<br />

forward to opening a new modern<br />

facility providing more care and<br />

more services for our regional<br />

Clients, and of course catering for<br />

our high-support Clients as well,”<br />

Marcus said.<br />


<strong>MSWA</strong> CLIENT<br />



To any young person living with an acquired brain injury, Rebecca Carbone says, “It’s possible<br />

to rebuild your life from the ground up, like I did”. Rebecca is passionate about improving<br />

the rehabilitation experience of young people, something she says requires both personal<br />

grit and determination, as well as surrounding yourself with people who understand that<br />

an injured brain can do remarkable things to reorganise itself, when given the right therapy.<br />

It was February 2014 when Rebecca<br />

realised something was wrong.<br />

She was working 50-60 hours per<br />

week in the oil and gas industry<br />

and suddenly became unwell.<br />

Thinking it was a flare up of the<br />

chronic fatigue syndrome she had<br />

been diagnosed with in 2013, she<br />

reluctantly took three months<br />

off work.<br />

However, three weeks after her<br />

30th birthday, while getting ready<br />

to meet a friend for coffee, Rebecca<br />

felt an overwhelming urge to lie<br />

down. Once she did, she couldn’t<br />

move. Her body began to tremble.<br />

“I was scared,” recalls Rebecca. “I<br />

thought – am I having a seizure?”<br />

Health Direct told her to go straight<br />

to her local ER, who unfortunately<br />

sent her away. “They told my<br />

parents I presented like a young<br />

person who was coming off drugs<br />

and advised them to look at rehab<br />

for me. Thankfully, my parents<br />

didn’t believe this.<br />

“My head hurt for days afterwards.<br />

My GP, who knows me well, was<br />

concerned. He booked me in for an<br />

MRI ‘just in case’.”<br />

Reassured, Rebecca prepared<br />

to attend her best friend Nelly’s<br />

engagement party. But again, she<br />

lay down and started shaking. Her<br />

speech was slurred and she couldn’t<br />

attend the celebration.<br />

It was Nelly who took her to the MRI<br />

appointment days later. Rebecca<br />

remembers how the radiology staff<br />

were the same age as her, and that<br />

they had a joke and a laugh when<br />

she went in. “But when I came out,<br />

they seemed suddenly serious,”<br />

recalls Rebecca.<br />

The next day, she should have been<br />

wedding dress shopping with Nelly,<br />

but her GP called and requested<br />

she come in to the surgery. “I knew<br />

what that call was,” says Rebecca.<br />

Her GP was straight-faced. “They’ve<br />

found something,” he said. “You’ve<br />

got a brain tumour.”<br />

Rebecca immediately asked about<br />

her prognosis.<br />

“Rebecca, it’s up to you,’ said her GP.<br />

“If you want to live, you’ll fight. If you<br />

decide you want to die, you may as<br />

well give up right now.”<br />

Rebecca told him she wanted to live.<br />


“My parents were inconsolable,”<br />

Rebecca recalls. “But my GP told<br />

them to keep me happy and<br />

calm, to keep me strong for the<br />

neurosurgery.<br />

“I phoned my best friend to ask if<br />

she’d found her dress. She had. And<br />

then I told her I had a brain tumour.<br />

She was devastated, then we joked<br />

that I was showing her up!” laughs<br />

Rebecca.<br />

At Murdoch Hospital, Rebecca<br />

went for a second MRI to confirm<br />

if the symptoms she had been<br />

experiencing were a result of<br />

seizures or strokes. “I was bleeding<br />

from a tennis-ball-sized brain<br />

tumour. I’d been having strokes.”<br />

The week running up to the surgery<br />

was emotional. Nelly asked Rebecca<br />

to be a bridesmaid at her wedding.<br />

However, Rebecca was convinced<br />

she was going to die. “I wrote out<br />

a list of who should looks after my<br />

dogs and cats, who would have my<br />

stuff. I saw friends, made amends,<br />

tied up loose ends.”<br />

On the morning of the surgery,<br />

her parents were right by her side.<br />

“They walked me down to theatre –<br />

right in. That was when it really hit<br />

me that they weren’t expecting me<br />

to come out.”<br />

Initially, it seemed the surgery to<br />

remove the tumour went well.<br />

Rebecca woke and was very<br />

responsive. Unfortunately, at 6am<br />

the next morning, she was rushed<br />

to emergency surgery.<br />

Rebecca has no memory of the<br />

following month, which was spent in<br />

ICU. She couldn’t see, move or speak,<br />

and she was struggling to breathe.<br />

Her doctors held a meeting with her<br />

family. “They told my parents that<br />

I needed to be moved into a care<br />

home. That I was never going to<br />

recover. That I would never function<br />

independently again.<br />

“Apparently, my dad – who is usually<br />

quite gentle – stood up in anger and<br />

stormed out of the room, declaring,<br />

‘You don’t know my daughter!’”<br />


After some negotiation, the State<br />

Head Injury Unit admitted Rebecca<br />

as a rehabilitation patient.<br />

It was around this time that<br />

Rebecca’s memories begin again.<br />

She recalls her GP visiting and him<br />

explaining to her, “Rebecca, you<br />

had a massive stroke.”<br />

Rebecca found her stay at rehab<br />

harrowing. “I had to relearn everything<br />

– all my gross motor skills. I still couldn’t<br />

see and I was very photophobic. I cried<br />

myself to sleep most nights.”<br />

continued over ><br />


<strong>MSWA</strong> CLIENT<br />

When Nelly came to visit her,<br />

Rebecca told her to choose a<br />

new bridesmaid.<br />

Nelly refused to hear it, saying,<br />

“I’ll push you down the aisle in a<br />

wheelchair if that’s what it takes!”<br />

Rebecca thought, “Well there’s<br />

nothing else for it – I’ll need to learn<br />

to walk again.’”<br />


Upon discharge, Rebecca was<br />

much more mobile, yet she still<br />

couldn’t see. Her hands shook and<br />

she needed the aid of a wheelchair<br />

or stick to get around.<br />

“This was as far as people thought<br />

I would get,” explains Rebecca.<br />

But she and her family refused to<br />

accept that, and with the help of the<br />

rehabilitation speech pathologists,<br />

physiotherapists and occupational<br />

therapists that visited her at home,<br />

Rebecca continued to improve.<br />

It was at this time that Rebecca<br />

was introduced to neuroplasticity.<br />

She recalls that reading The Brain<br />

That Changes Itself by Norman<br />

Doidge had a profound effect on<br />

her. Neuroplasticity is defined as<br />

the brain's ability to reorganise itself<br />

by forming new connections. This<br />

process allows the nerve cells in the<br />

brain to compensate for injury and<br />

disease and to adjust their activities<br />

in response to new situations or<br />

changes in their environment.<br />

Rebecca realised that if she was<br />

willing to put in the work, incredible<br />

things could happen.<br />

So she put in the work, committing<br />

to practicing the exercises she had<br />

been set for 2-4 hours daily, with the<br />

help of her ever-positive dad.<br />

Eventually her sight came back. Her<br />

speech incrementally improved and<br />

in October 2015, Rebecca walked<br />

down the aisle, unaided, at her best<br />

friend’s wedding in Queensland.<br />

“I felt hopeful that I could still lead<br />

a happy and fulfilled life despite the<br />

brain injury."<br />


It took six months for the tumour<br />

they removed from Rebecca’s brain<br />

to be diagnosed. Rosette Forming<br />

Glioneuroma of the Fourth Ventricle<br />

is a rare type of tumour that affects<br />

the central nervous system..<br />

Rebecca’s just happened to be on<br />

the brain.<br />

Today, the tumour is still there.<br />

However, it is very slow growing.<br />

In 2016, two more tumours were<br />

found on the brain stem. The<br />

only intervention possible is close<br />

monitoring via yearly MRIs.<br />

Whilst Rebecca’s recovery<br />

from what happened has been<br />

significant, she still struggles with<br />

symptoms like neurological fatigue,<br />

vertigo, photophobia, tremors, slow<br />

reflexes and migraines. A lot of<br />

these symptoms are due to nerve<br />

damage in her neck and shoulders.<br />

In addition, she’s been advised that<br />

the hormones from pregnancy may<br />

impact the tumour growth. “It’s<br />

another thing I’ve lost,” she says.<br />

Remarkably, it wasn’t until two<br />

years after the surgery that she<br />

experienced a period of depression.<br />

She recalls going to see her GP, who<br />

asked her, “What do you want to do<br />

with your life now?”<br />


In 2018, Rebecca began speaking<br />

to neurologists and neurosurgeons<br />

as a lived-experience speaker. Her<br />

recovery defied the odds and her<br />

journey is now used as a training tool<br />

in hospitals across the state. She’s<br />

also spoken as part of a local TEDx<br />

event, currently sits on the Board<br />

of the Ishar Multicultural Women’s<br />

Health Centre, and is training to be<br />

a life coach. Each May, she is heavily<br />

involved in the international brain<br />

cancer awareness campaign, ‘Go<br />

Grey in May’.<br />

Rebecca is passionate about<br />

challenging the assumption that<br />

a young person with a brain injury<br />

will end up in full time care. “There<br />

needs to be a focus on putting<br />

more effort in at the beginning, and<br />

tailoring the rehabilitation process<br />

to the needs and interests of the<br />

young person.<br />

“You need to tie rehab in with what<br />

people love. I made great progress<br />

when a speech pathologist<br />

incorporated my love of poems and<br />

songs into the exercises she set.<br />

“Surround yourself with the right<br />

supports, who listen to what’s<br />

important to you.” She recalls one<br />

physical therapist laughing when<br />

she said her goal was to walk in<br />

heels again. “I’m a young vibrant<br />

person, that goal was very serious<br />

to me. He didn’t understand that.”<br />

In 2018, Rebecca joined <strong>MSWA</strong> and<br />

accesses counselling, occupational<br />

therapy, physiotherapy, customer<br />

engagement and social welfare.<br />

She is particularly enthusiastic<br />

about <strong>MSWA</strong>’s commitment to<br />

research, particularly in the area of<br />

neuroplasticity.<br />

“Neuroplasticity exists and we<br />

need to harness that power” says<br />

Rebecca. “The possibilities could<br />

be endless. It could be applied to<br />

anything, not just disability or brain<br />

injury.”<br />



INTO THE<br />

BLUE<br />


<strong>MSWA</strong> CLIENT<br />

Photos courtesy of Skydive Perth.<br />

When I first told friends I was planning on going skydiving they asked if it was something<br />

that had always been on my bucket list, something I just hadn’t got around to before I was<br />

in a wheelchair. But the truth was, with my 50th birthday approaching, I was trying to find<br />

something special I could do to celebrate the milestone.<br />

Then one of my relatives told me<br />

about someone they knew in a<br />

wheelchair who’d gone skydiving<br />

and I thought ‘If they can do it so<br />

can I!’ I decided then that I wanted<br />

to challenge myself. To really step<br />

outside my comfort zone.<br />

I religiously attend Physiotherapy<br />

and Outreach every Tuesday at<br />

<strong>MSWA</strong> Rockingham. My regular<br />

Physios Luke, Sharon and Ashleigh,<br />

who help me maintain my current<br />

level of independence, cheered me<br />

on when I told them about my plan,<br />

and Luke even helped me to write<br />

this article!<br />

I booked in to skydive at York, just<br />

outside Perth, only for Skydive<br />

Australia to announce they were<br />

shutting down their York operations<br />

and moving to Rockingham. Never<br />

mind, that suited me even better<br />

living down this way.<br />

So I re-booked at Rockingham for<br />

early 2020 only for COVID to hit and<br />

shut things down again! I told them<br />

to keep the money and call me<br />

when they re-opened. Despite the<br />

setbacks I was determined to go<br />

through with my plan.<br />

When I heard they had reopened<br />

I called them again and finally<br />

booked in for 19 December 2020. A<br />

year too late for my 50th birthday<br />

but I was finally going to do it.<br />

When the day came the team<br />

at Skydive Australia were fantastic<br />

at looking after me and making<br />

sure everything I needed was taken<br />

care of.<br />

My tandem instructor<br />

Don had even designed a<br />

special harness for people<br />

in wheelchairs that allowed<br />

him to pull their legs up into<br />

place for the landing if, like<br />

me, they weren’t able to<br />

do it themselves.<br />

I won’t lie, when they first swung<br />

my legs out of the plane ready to<br />

jump, I thought ‘what am I doing?’<br />

I had my eyes clamped shut at first,<br />

but forced myself to open them and<br />

enjoy the amazing view.<br />

After landing all I could think<br />

was ‘WOW!’ I’m so grateful that<br />

someone in my condition was able<br />

to have an experience like this. I<br />

highly recommend the experience<br />

for anyone and everyone, especially<br />

anyone with a disability. Don’t<br />

let your situation stop you from<br />

chasing amazing experiences and<br />

living out your dreams. If I can do it<br />

anyone can!<br />




Our Beechboro Outreach groups have been meeting for over 30 years. This year the Monday<br />

group, colloquially known as ‘Eastside’, will turn 31 and the Friday group, known as ‘Northside’,<br />

will turn 33. This is an amazing achievement.<br />

As well as long term Clients, many<br />

of which have been with the groups<br />

since they started, there are staff<br />

working at Beechboro Outreach<br />

who have been working with <strong>MSWA</strong><br />

for over 20 years. Christine Weston,<br />

who started as a care support<br />

worker and now is relief coordinator,<br />

began working in Outreach 17 years<br />

ago this year. Brenda Smith, the<br />

kitchen supervisor for the group,<br />

has worked for 18 years cooking<br />

up a storm twice a week. And big<br />

congratulations go to Jackie Dinsey,<br />

who is a care support worker and<br />

this year is her 25th with <strong>MSWA</strong>.<br />

Chrystal Ruthven is presently the<br />

coordinator of the group, and<br />

newcomer Emma Chute has been<br />

assisting Chrystal, together with<br />

care support worker, Jenny Joyce.<br />

The team would not be complete<br />

without the wonderful volunteers<br />

who ably assist the staff. Peter<br />

Barnes, who never misses a Friday,<br />

is a very intricate part of the<br />

team who always puts a smile on<br />

everyone’s faces.<br />

The Outreach room, where<br />

Clients meet from 8.30am<br />

onwards, is a large bright<br />

and airy room with a warm<br />

welcoming feeling from the<br />

minute one steps in the door.<br />

The activities this year have been<br />

varied. A popular activity earlier this<br />

year was slot car racing, where the<br />

track and race cars were built on<br />

the premises! Heaps of fun for those<br />

who joined in.<br />

In February there was an ‘inspiration<br />

craft’ session where Clients<br />

coloured and embellished an array<br />

of formats, making some into to-do<br />

lists using a whiteboard marker.<br />

Quizzes, brain teasers, board games<br />

and card games are very popular<br />

with both groups.<br />

March was a jam-packed month<br />

starting with St Patrick’s day<br />

activities. Hats off to both groups<br />

for their enthusiasm in making<br />

their personal t-shirts, celebrating<br />

everything Irish! Clients wore<br />

their handmade shirts on the day<br />

and there was a prize for the best<br />

Irish joke.<br />

The end of March was the Easter<br />

celebrations, with the main activity<br />

being making your own chocolates.<br />

Clients rolled up their sleeves to<br />

join in, many speaking about the<br />

memories it brought back of when<br />

they were children.<br />

A new activity being offered<br />

from April is woodwork. Items on<br />

the agenda for making include<br />

bird feeders.<br />

Some guest singers recently visited<br />

the Eastside group. ‘Rock and roll’<br />

was the theme of the day and<br />

Clients were able to dress up for<br />

the occasion.<br />

Well done to all the Clients, staff<br />

and volunteers who have made<br />

Beechboro Outreach the success it<br />

is today.<br />

The two Beechboro Outreach<br />

Groups meet at Beechboro Lodge<br />

(corner Amazon and Darwin<br />

Crescent in Beechboro) on Mondays<br />

and Fridays.<br />

If you are reading this and feel<br />

Outreach is a place you would like<br />

to visit, please contact Nicola Ryan,<br />

Senior Outreach Coordinator on<br />

9365 4830 or Chrystal Ruthven,<br />

Outreach Coordinator on 6454 2878.<br />






Did you know that <strong>MSWA</strong> Treendale Respite can support you and your family to take a break<br />

in the South West?<br />

Our six bedroom purpose-built respite facility provides personalised care in a peaceful,<br />

back-to-nature setting. Located next door is a wonderfully appointed three bedroom family<br />

holiday unit, where families can get away together for a holiday in the South West whilst<br />

accessing drop-in supports for their loved one.<br />

“I first booked into Treendale six<br />

years ago and since then, stay<br />

for close to two weeks every<br />

three months.<br />

The benefits for me include being<br />

in an environment where I am<br />

comfortable, safe and secure, while<br />

my husband (my sole carer) gets a<br />

well-deserved break. The staff are<br />

generous with their care, taking the<br />

time to understand my individual<br />

needs and my want for as much<br />

independence as possible. They are<br />

friendly and discreet.<br />

I’m able to visit a cafe at the nearby<br />

shopping centre on a regular basis.<br />

I go there with family and friends<br />

who live close by which is a bonus.<br />

My stay is funded through my<br />

NDIS plan.”<br />

- Janet, <strong>MSWA</strong> Treendale Client<br />

“We are grateful to have the<br />

opportunity to stay together in<br />

the <strong>MSWA</strong> Treendale Family Unit.<br />

It unites us as a family, with the<br />

support of caring and experienced<br />

staff, who are available when we<br />

require them and understand<br />

our needs.<br />

It brings us closer to family in the<br />

area, who can also visit us in the<br />

unit. We enjoy the close proximity<br />

to many shops and the unit is<br />

equipped with all the comforts of<br />

home, allowing for an enjoyable<br />

and relaxing country break away<br />

from our normal routine.<br />

The peaceful surroundings and<br />

wheelchair accessible paths make<br />

this an ideal setting for a family<br />

who has a loved one with high<br />

support needs.”<br />

- <strong>MSWA</strong> Treendale Client<br />

If you or a family<br />

member are living with<br />

a neurological condition<br />

and want to find out more<br />

about our respite options,<br />

please contact us and<br />

quote ‘<strong>Bulletin</strong>’:<br />

Call 1300 097 989 or email<br />

treendale@mswa.org.au<br />





Hello to all our beautiful volunteers.<br />

Winter is coming, and with the<br />

cooler weather, often comes other<br />

changes. It is important to adapt<br />

and change and where possible,<br />

go with the flow. Life is like a<br />

wave, always flowing, shifting and<br />

changing and it is important to try<br />

and ride and move with it.<br />

For me, there is a significant change<br />

imminent: I have made the difficult,<br />

(and I mean difficult), decision to<br />

leave <strong>MSWA</strong> after nine and a half<br />

years! I have loved working with this<br />

organisation and supporting you,<br />

our volunteers. I will miss you all,<br />

and I will hold all of you dear to me.<br />

I was so humbled to see so many<br />

of you, and the staff, at my farewell<br />

and let us just say it isn’t a goodbye<br />

but a ‘see you later’. I am off on a<br />

new adventure as a hiking guide<br />

and will be fortunate to explore WA<br />

a bit further, especially Karijini and<br />

the Kimberley.<br />

I am sure the next Volunteer and<br />

Camp Coordinator will do a brilliant<br />

job and bring a breath of fresh air<br />

with them. I trust you will be in<br />

good hands.<br />

The National Volunteer Luncheon<br />

in May will have been celebrated by<br />

the time you receive this <strong>Bulletin</strong>,<br />

and for those who attended, I am<br />

sure you will have enjoyed the<br />

banter, the great food, and the<br />

company.<br />

I received volunteering data back<br />

in February which stated the<br />

volunteering industry nationally is<br />

not snapping back even though<br />

restrictions are lifting. I know some<br />

organisations are struggling, as the<br />

statistics state that two out of three<br />

volunteers stopped volunteering<br />

during the height of the pandemic<br />

in 2020, which equated a total loss<br />

of an estimate 12.2 million hours<br />

per week across Australia. However,<br />

we have been so fortunate here at<br />

<strong>MSWA</strong>, as most of our volunteers<br />

came back and we have regular<br />

enquiries from people wanting to<br />

volunteer every week. We are truly<br />

blessed as an organisation.<br />

I have been on two camps<br />

since the last <strong>Bulletin</strong>. We<br />

had the carer’s retreat at<br />

Rottnest and the Client camp<br />

at Woodman Point. Both<br />

were great fun in different<br />

ways, and everyone enjoyed<br />

the venues, food, and most of<br />

all the stories and company.<br />

These camps only run so well<br />

because of both our volunteers and<br />

the staff who volunteer over and<br />

above their standard work hours.<br />

I wish to say a big thank you to<br />

Emma, Rosalind and Ashleen for<br />

getting down and dirty with us at<br />

Woodman Point. Without you the<br />

camp would not have been a great<br />

success.<br />

The new Volunteer Coordinator’s<br />

details will be circulated as soon as<br />

the appointment has been made.<br />

For any queries about camps<br />

please contact Sandra Wallace, by<br />

email sandra.wallace@mswa.org.au<br />

or call 6454 3171.<br />

Take care, farewell, and I hope to see<br />

you all again one day.<br />





DO YOU WANT A SAY IN <strong>MSWA</strong>’S<br />


<strong>MSWA</strong> is proud of the work we do to support Western Australians living with a neurological<br />

condition. Our collective efforts enable us to continue to build state-of-the-art Services<br />

Centres and high-support accommodation units across regional and metropolitan WA,<br />

contribute significant funding to neurological research in Australia and internationally<br />

year-on-year and, of course, provide ongoing services and support to you, our Clients.<br />

As a Client of <strong>MSWA</strong>, you<br />

have the right to Membership<br />

at <strong>MSWA</strong>. <strong>MSWA</strong> Membership<br />

gives you voting rights, which<br />

means you have a say in<br />

<strong>MSWA</strong>’s direction for a continued<br />

successful future.<br />

Each year at our Annual General<br />

Meeting, all paid Memberships will<br />

be able to vote on any issues raised.<br />

If you’re interested in<br />

<strong>MSWA</strong> Membership,<br />

or would like more<br />

information, you can visit<br />

mswa.org.au/membership<br />

or call 6454 3122<br />

ANNUAL <strong>MSWA</strong> CLIENT FORUM –<br />


A great opportunity to hear from specialists in their<br />

fields and exciting <strong>MSWA</strong>-funded researchers.<br />

Date: Wednesday, 15 September <strong>2021</strong> in Wembley.<br />

More news next edition!<br />




Sunday morning, there I was sitting with a friend at the local markets, enjoying the sunshine,<br />

the music, and the coffee. I overheard a person sitting nearby say, “If you don’t make time for<br />

your health you will have to make time for your illness.” It was a comment that really made<br />

me pause. I know all about self-care, and I know a bit about illness, so why don’t I make<br />

self-care a higher priority? With that on my mind, the opportunity to write this article was<br />

presented. It was a sign – article to self!<br />

I did a little more pondering, and a<br />

bit of asking around. This is what I<br />

came up with.<br />

Self-care is the bottom line of taking<br />

care of our health. We no longer live<br />

in a tribal village and I, like many<br />

others in WA, live in a different place<br />

from my extended family – my<br />

original tribe. Whilst I have a place<br />

in my current tribe, I mostly lead<br />

an isolationist lifestyle. This means<br />

I am responsible, to the best of my<br />

ability, for making sure I am ok.<br />

In our society we cling to as much<br />

independence as possible. It follows<br />

then, that we also cling to being<br />

responsible for ourselves. Or do we?<br />

Robert Cooper asks the question,<br />

“If we knew that the first twenty<br />

minutes of the day set the tone for<br />

the rest of the day, how would we<br />

spend that twenty minutes?”<br />

I asked myself ‘what makes me<br />

want to get out of bed?’ Here is my<br />

list: friends, exercise, the dog, the<br />

garden, and my work, because I<br />

enjoy what I do, and who I do it with.<br />

We know that self-care is about<br />

lowering our stress levels, but it is<br />

also about enjoying our lives. So,<br />

what are we doing when we lose<br />

track of time? For some it is a good<br />

laugh, sitting in the bush, being<br />

with nature, feeling the connection,<br />

being still and with self.<br />

Anyone who is learning to meditate<br />

will testify that being still, sitting<br />

within your body, and being<br />

observant of the self is not easy.<br />

Jules Shakira from The Grief Centre<br />

of Western Australia says, “Making<br />

friends with whatever one is feeling<br />

automatically causes a relaxation<br />

of mind and body.” Or, if you like –<br />

heart, mind, and body.<br />

Acceptance of self, and knowing that<br />

of yourself, you are enough, in this<br />

moment and every other moment.<br />

Aim to be soft, and witness rather<br />

than exacerbate, the drama of life.<br />

Come out of the story and back into<br />

your body. Whatever state it is in, it<br />

is yours. Trust in yourself. You know<br />

what you need and what to do.<br />

Reference:<br />

Cooper, R. 2016. ‘The Neuroscience of an<br />

Exceptional Life’, robertcooperphd.com<br />


<strong>MSWA</strong> COUNSELLOR<br />


I’m a big fan of self-care and over the years have figured out what works<br />

well for me. Maybe something on this list will be useful for you too.<br />

/ Scheduling a sleep in. Extra sleep is lovely, isn’t it!<br />

/ Drinking a tonne of water.<br />

/ I don’t do meditation or yoga, but I do breathing practice – I have<br />

an app on my watch that tells me to stop and take a breath.<br />

/ Essential oils are a big part of my day. I put drops of oil on lava<br />

jewellery and take the time to do this ritual each morning.<br />



<strong>MSWA</strong> CLIENT<br />

/ Eating as cleanly as possible. You can speak to a dietician about<br />

healthy eating and the elements of nutrition that are particularly<br />

important.<br />

/ Exercise – I love to do YouTube dance tutorials to get my steps up.<br />

/ Relaxing in the evening with TV or a movie. I have my own TV space<br />

separate from the kids’!<br />

/ Keeping in touch with friends. I’m texting all the time.<br />

/ Sitting in the sunshine, and of course going to the beach if you can.<br />

/ Watching sunsets and taking the time to be outside and breathe.<br />


This autumn, we’re challenging you to one of our brain games – the Stroop Test.<br />

Psychologist John Ridley Stroop<br />

created the Stroop Test in 1935.<br />

When you’re asked to read the<br />

words, or name the colour of the<br />

word, you really have to pause!<br />

This might be because the<br />

brain reads words faster than it<br />

recognises colours, or because<br />

colour recognition requires more<br />

attention than reading words.<br />

Or perhaps it’s just because we’re<br />

more used to reading words than<br />

noting their colours.<br />



WHAT’S ON<br />

STEP UP FOR <strong>MSWA</strong><br />

Sunday, 20 June <strong>2021</strong><br />

Step Up for <strong>MSWA</strong> challenges<br />

you to climb 1,103 steps to the top<br />

of Perth's tallest building - once,<br />

twice, or even multiple times<br />

(new for <strong>2021</strong>)!<br />

The big event takes place on<br />

Sunday, 20 June, and there is even<br />

a special Mini Climb challenge<br />

(435 stairs) designed exclusively for<br />

children (aged six and over).<br />

Join us at Central Park this June<br />

and challenge yourself to reach<br />

new heights, whilst making a real<br />

difference for people living with<br />

neurological conditions.<br />

Find out more at:<br />

stepupformswa.org.au<br />


Sunday, 14 November <strong>2021</strong><br />

Are you ready to take the plunge<br />

with #Team<strong>MSWA</strong> this November?<br />

It’s a unique opportunity to abseil<br />

220 metres down Perth’s tallest<br />

building, Central Park, while<br />

making a real difference to the<br />

thousands of people living with<br />

neurological conditions here in<br />

Western Australia.<br />

Get together with family and friends<br />

to conquer a once-in-a-lifetime<br />

experience!<br />

Join <strong>MSWA</strong> Client, Mauritz<br />

Oberholzer, who had this to share<br />

when we asked about his Central<br />

Park Plunge experience:<br />

“I enjoyed the 2020 Central Park<br />

Plunge so much, that’s why I have<br />

signed up to take the challenge<br />

again. It is my way of contributing<br />

and helping to make a difference.”<br />

Are you ready to join Mauritz on<br />

Sunday, 14 November?<br />

For more information, or to<br />

sign-up online today, visit<br />

centralparkplunge.com.au or get<br />

in touch with the <strong>MSWA</strong> Events<br />

team today – events@mswa.org.<br />

au or 08 6454 3131.<br />



The rollout of the vaccination<br />

program is currently underway in<br />

Western Australia. According to the<br />

Federal and State Government, the<br />

most recent health advice indicates<br />

that the AstraZeneca vaccinations<br />

will only be given to people over the<br />

age of 50 and Pfizer for those under<br />

50 years of age; which is causing<br />

delays in the planned roll out.<br />

The vaccine is being distributed<br />

in stages with a priority on certain<br />

groups who would receive the<br />

vaccine first. WA is currently in<br />

phase 1b of the program, but due<br />

to supply issues with Pfizer they<br />

have now also included 2a (which is<br />

people over 50). To find out whether<br />

you are eligible for the vaccine, head<br />

to: rollup.wa.gov.au<br />

Globally, 89 vaccines are in clinical<br />

trials, 27 of which are in the final<br />

stages. Several across the globe<br />

have been approved for use after<br />

being deemed safe, effective, and<br />

a likelihood to reduce the risk of<br />

serious illness.<br />

It is currently recommended that<br />

everyone over the age of 18 years<br />

should be vaccinated against<br />

COVID-19. Your neurologist or GP<br />

will have the most up-to-date<br />

information regarding the safe<br />

administration of the vaccines<br />

for people living with – and those<br />

on treatment for – different<br />

neurological conditions.<br />

<strong>MSWA</strong> is regularly updating<br />

its COVID-19 information here:<br />

mswa.org.au/an-update-aboutcoronavirus-covid-19<br />



We want to hear from you. Your feedback helps us to understand what is working well and<br />

where we can improve.<br />

You can raise a concern or<br />

acknowledge the supports an <strong>MSWA</strong><br />

staff member has provided by:<br />

/ Talking to the coordinator of<br />

your services<br />

/ Telephoning the Complaints<br />

Liaison and Compliance<br />

Coordinator, Michelle John,<br />

on 6454 3146.<br />

/ Emailing<br />

feedback@mswa.org.au<br />

/ Writing to Quality and<br />

Compliance; Locked Bag 2,<br />

BENTLEY DC 6983.<br />

Please tell us:<br />

/ What happened<br />

/ When it happened<br />

/ Who was involved<br />

/ What you would like to see<br />

occur as a result of sharing your<br />

feedback<br />

All feedback is reviewed, and<br />

complaints investigated in a timely<br />

manner with the team responsible<br />

for the service.<br />

Our goal is to achieve a positive<br />

outcome for all people involved<br />

and improve the quality of the care<br />

and services provided. You will be<br />

included in the process and the<br />

outcomes shared with you.<br />

Please note, you have the right to<br />

have support from an advocate at<br />

any point in a complaint process.<br />

The Complaints Liaison and<br />

Compliance Coordinator can help<br />

you to access an advocacy service<br />

if you wish.<br />





YOUR WAY.<br />

Discover more about our safe and<br />

flexible NDIS services available in<br />

person, on the phone or online.<br />


Hooray! Your file is uploaded and ready to be published.

Saved successfully!

Ooh no, something went wrong!