MSWA Bulletin Magazine Winter 2022

Farewell Sue Shapland | Pain and pain management series: Part 5 | MSWA's Employment Support Service | Tips for staying motivated over winter

Farewell Sue Shapland | Pain and pain management series: Part 5 | MSWA's Employment Support Service | Tips for staying motivated over winter


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

<strong>Winter</strong> <strong>2022</strong><br />

mswa.org.au<br />

INSIDE<br />

/ Farewell Sue Shapland<br />

/ Pain and pain management<br />

series: Part 5<br />

The end of an era: this quarter, we wave goodbye<br />

to Sue Shapland (right) after 19 ½ years at <strong>MSWA</strong>,<br />

and Ros Harman (left) steps down from the <strong>MSWA</strong><br />

Board after 18 years.<br />

/ <strong>MSWA</strong>’s Employment<br />

Support Service<br />

/ Tips for staying motivated<br />

over winter


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 />


Vanishree Chetti 9365 4818<br />


Senior Coordinator,<br />

Nelly Higginson 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 />



Manager, Kate Jones 6154 5085<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 Davina Sawyer 6454 3173 or<br />

feedback@mswa.org.au<br />


Sue Shapland, Nicola Washington,<br />

Libby Cassidy, Jamey Claffey and<br />

Nicolette Murphy.<br />


Geoff Hutchinson, Carol Chong,<br />

Dajana Tesevic, Vanishree Chetti,<br />

Denise Vogels, James Beckett,<br />

Tracey Hockey, Misty Reinkowsky<br />

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 />

COMMUNITY NURSE: 9365 4888<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 />



The <strong>MSWA</strong> Employment Support Service is the only specialist employment service<br />

for people living with multiple sclerosis in Western Australia and can help you to<br />

stay in your current job or find employment in the open labour market.<br />




Welcome to the winter <strong>2022</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 />



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



ON HIS STROKE RESEARCH ......... 7<br />

RESEARCH ROUND UP. .......... 8-10<br />


REAP THE BENEFITS. ............... 11<br />


DAMAGED WINGS ............... 12-14<br />

THANK YOU ROS HARMAN. .........15<br />



FAREWELL SUE SHAPLAND. ..... 16-17<br />

INTRODUCING <strong>MSWA</strong>’S<br />


SERVICE. ........................18-19<br />


HIS RECOVERY. ................. 20-21<br />


LIKE KANYE LOVES KANYE”. ....... 22<br />

THE GIFT OF PAUSING ............. 23<br />


OVER WINTER . .................... 24<br />

MY LIFE AT <strong>MSWA</strong> ................. 25<br />

MEET THE <strong>MSWA</strong> MEGA HOME<br />

LOTTERY 22A WINNERS! ........... 26<br />

A STEP UP SUCCESS . .............. 27<br />

VOLUNTEER UPDATE .............. 28<br />

CAMPS UPDATE ................... 29<br />


THIS WINTER. .................. 30-31<br />

PAIN AND MEDICATIONS. ....... 32-35<br />


ALBANY. .......................... 36<br />


OUTDOOR UPGRADE .............. 37<br />


MARGARET DOODY HOUSE . ....... 38<br />


FEEDBACK & COMPLAINTS. ........ 39<br />



OF THE CEO<br />


CEO<br />

It is hard to believe it has been<br />

over five months since I joined<br />

<strong>MSWA</strong>. In so many ways it feels<br />

like it has been so much longer<br />

and in others, it has simply flown.<br />

In all respects, it has lived up to my<br />

expectations. The Clients I have<br />

met who have been so open, warm<br />

and sharing, and our staff who<br />

are so unbelievably committed to<br />

our Purpose of supporting people<br />

with neurological conditions to live<br />

their best lives. Our goal is to be<br />

the difference that allows them to<br />

do that.<br />

Whilst COVID-19 has become the<br />

new ‘normal’, we cannot forget the<br />

impact it has had on everyone since<br />

it started. I am incredibly grateful<br />

to all our staff, Clients and their<br />

carers, who have adapted to stricter<br />

measures, staff shortages and even<br />

lockdowns. I can see the fatigue on<br />

everyone’s faces and I hope many<br />

get to take a break and catch their<br />

breath, especially as travel is now<br />

a little easier and freer. To all of<br />

you who are getting to meet up<br />

with family and friends you haven’t<br />

seen for so long, I wish you a<br />

wonderful reunion.<br />

This last period has also brought<br />

significant change. We have said<br />

goodbye to both Ros Harman our<br />

President and long serving Board<br />

member, and Sue Shapland who<br />

has been a leader at <strong>MSWA</strong> for<br />

almost 20 years. Both have gone<br />

to focus on family and in Sue’s<br />

case, to ponder her next adventure.<br />

Senior Manager, Administration,<br />

Property Development & Facilities<br />

Andrea Taylor departed <strong>MSWA</strong> at<br />

the end of July, after 20 years with<br />

the organisation. Every <strong>MSWA</strong><br />

residential facility you walk into<br />

has Andrea’s mark on it and she<br />

should be so proud of everything<br />

she’s done.<br />

We thank them on behalf<br />

of our Clients, research<br />

partners, clinicians and<br />

staff – locally and nationally.<br />

They are part of the proud<br />

history of <strong>MSWA</strong>.<br />

There are many exciting<br />

developments and changes<br />

coming, including us welcoming a<br />

number of new staff and taking on<br />

greater challenges.<br />

Nicola Washington (who has led<br />

our community services teams for<br />

the last few years) is taking on all<br />

our Client operations (including<br />

Residential) and Vanishree Chetti<br />

is stepping up to run our clinical<br />

operations, reporting into Nicki.<br />

In addition, we have promoted a<br />

dedicated Quality, Safety and Risk<br />

Manager Alison Cox, who will be<br />

reporting to me and will focus on<br />

taking an independent role from<br />

operations to make sure we deliver<br />

safe and high-quality services.<br />

I will also be appointing a dedicated<br />

People and Culture Executive to<br />

ensure we can attract, retain and<br />

develop our workforce and people.<br />

As we move ahead to implement<br />

our new people centred strategy,<br />

focused firmly on our Purpose,<br />

I look forward to listening to our<br />

Clients and staff to understand<br />

how we build on the great work our<br />

teams already do and make an even<br />

greater impact for the people we<br />

are here to support.<br />

I hope you brave the cold weather<br />

well, keep eating well, (soups,<br />

roast veggies and my homemade<br />

almond apple crumble are my<br />

favourite), and don’t forget to keep<br />

moving as much as possible – it is<br />

not only good for you but it helps<br />

to keep you warm. I am finding it<br />

so hard to get up in the morning to<br />

exercise when it is so cold and dark<br />

that I have started contemplating<br />

sleeping in my exercise clothes!<br />

Take care and thank you for your<br />

ongoing support of <strong>MSWA</strong> and all<br />

that we are trying to do.<br />









“Don’t cry because it’s over.<br />

Smile because it happened.”<br />

Dr. Seuss<br />

Well, this is my last <strong>Bulletin</strong> post as<br />

I ride off into the sunset after 19 ½<br />

years at <strong>MSWA</strong>. Wow! Where did<br />

those years go?<br />

It is with some sadness but great<br />

pride that I leave <strong>MSWA</strong>. When I<br />

joined, we were a much smaller<br />

organisation and in need of change or<br />

we wouldn’t survive financially – and<br />

look at us now! Our income streams<br />

were overhauled, and the <strong>MSWA</strong><br />

Mega Home Lottery became the<br />

real game changer for us – injecting<br />

much needed funds to support our<br />

Clients, plug the gaps (pre-NDIS)<br />

and grow our services and footprint<br />

to meet the diverse range of needs<br />

from the newly diagnosed through<br />

to those with high care needs.<br />

I was here for the roll out of many<br />

of the MS disease modifying<br />

treatments, growing from four<br />

treatments in 2003 to 13 now, and<br />

our MS nursing team was there<br />

providing vital tailored information<br />

and support including in-hospital<br />

clinics, which all continues now.<br />

As we became more successful,<br />

we were able to grow our fantastic<br />

allied health team in the absence<br />

of government funding, adding in<br />

counselling, speech therapy and<br />

dietetics, supporting our holistic<br />

approach. In addition, we added<br />

new locations for our Outreach and<br />

Services Centres, bringing supports<br />

closer to home.<br />

We have increased our highsupport<br />

accommodation places<br />

from seven (in 2003) to 52 (in <strong>2022</strong>)<br />

and from one location to five.<br />

Building these beautiful homes has<br />

been a highlight for me and there’s<br />

more to come.<br />

I was here to see the WANDIS<br />

and NDIS projects roll out and<br />

can remember very well what a<br />

difference this has and does make<br />

compared to the lack of funding and<br />

supports so many Clients struggled<br />

with before the Scheme came about.<br />

Whilst there are still some issues with<br />

the Scheme overall it’s life changing<br />

for many and secures a future where<br />

changing care needs can be met,<br />

and equipment guaranteed.<br />

We have recently completed our<br />

first re-registration audit for the<br />

NDIS and are very pleased with the<br />

results. Some minor improvements<br />

were identified but no major nonconformities,<br />

which was great news.<br />

I would like to thank all our staff<br />

and the Clients who supported the<br />

process, took part in the interviews,<br />

and had their documents reviewed.<br />

Quality and Safety are always high<br />

on our agenda, and these are<br />

an ongoing focus for us as a<br />

service provider.<br />

I am also very proud of the<br />

ongoing funding we invest into<br />

research. Research provides<br />

hope, opportunity for greater<br />

understanding of conditions and<br />

how and why people are affected,<br />

new treatments, and hopefully<br />

cures and or prevention.<br />

We continue to support several<br />

quality research teams here in WA, as<br />

well as nationally through MSA, and<br />

this benefits our Clients, their families<br />

and our staff who get involved.<br />

As I leave, I just want to say I<br />

have been touched by so many<br />

wonderful and inspirational Clients<br />

over the years; their humility and<br />

resilience in the face of huge<br />

challenges has often grounded me<br />

and encouraged me to not sweat<br />

the small stuff and be grateful for<br />

my health and family!<br />

Thank you to all the wonderful,<br />

hard-working staff, who are really<br />

dedicated to supporting others<br />

and doing their best, it’s not always<br />

easy. Their support and flexibility,<br />

particularly in the face of COVID-19<br />

and the ongoing upheavals that has<br />

created, are greatly appreciated.<br />

A huge thank you to my Residential<br />

and Respite teams who do a<br />

fantastic job with our Clients and<br />

ensure they are well cared for in<br />

their new homes.<br />

I would also like to thank my wonderful<br />

family who have supported me<br />

through long hours and after-hours<br />

interruptions over the years. They<br />

have also been <strong>MSWA</strong> volunteers<br />

on many occasions, from setting up<br />

Beechboro Lodge and landscaping<br />

the grounds, through to roles in the<br />

Bike Rides and Step-Up events.<br />

So, it’s goodbye from me and<br />

thanks for the many proud<br />

memories.<br />


MEMBER &<br />





Welcome to the winter<br />

edition of our Member &<br />

Client Services <strong>Bulletin</strong>.<br />

We have certainly been<br />

feeling the colder weather.<br />

As I take a breath to reflect on<br />

what has been a roller coaster<br />

year with many challenges being<br />

thrown at all of us, including our<br />

fight through COVID-19, I can’t help<br />

feeling so proud of the people that<br />

work here at <strong>MSWA</strong>. The ongoing<br />

ability to pivot and change through<br />

the unknown and still maintain a<br />

clear focus on our service delivery<br />

is, quite frankly, remarkable. Our<br />

staff have faced some incredible<br />

challenges and have really pulled<br />

through by supporting each other<br />

as a team. I want to thank them for<br />

their incredible work and support<br />

for each other during this period.<br />

I am excited about the next horizon<br />

and getting to work on how we can<br />

improve on our delivery of services.<br />

We will be starting a deeper dive<br />

discovery into what you, our Clients,<br />

need and what you want, and how<br />

we can improve on our service<br />

delivery to you during different<br />

stages of your journey. This will be<br />

exciting work to gain a much clearer<br />

insight into what we do for you in the<br />

future and provide a clear strategy<br />

on what we need to execute. I look<br />

forward to starting this work and will<br />

keep you across how we proceed.<br />

On page 11 you will find an article<br />

from Geoff Hutchinson on the<br />

importance of NDIS plan utilisation.<br />

Please take the time to review, it<br />

is important to understand what<br />

happens to your unused funds.<br />

It will be interesting to see what<br />

changes we will see to the NDIS<br />

under a Labor Government. Watch<br />

this space and let’s hope we see<br />

some of the issues addressed and<br />

action in the right direction.<br />

On page 32 is the final instalment<br />

in our Pain and Pain Management<br />

series. This time the focus is on<br />

medication. Thank you to Bronwyn<br />

Innes for the series of articles she<br />

has contributed over the past year.<br />

Our Client Forum was held on 5<br />

July and we had a great turnout.<br />

As always, it was fantastic to hear<br />

from our internal and external<br />

experts about the latest in research<br />

and technology and how this is<br />

benefiting people living with a<br />

neurological condition.<br />

Finally, I would like to take this<br />

opportunity to say a fond farewell to<br />

Sue Shapland and Andrea Taylor.<br />

As you will know, both Andrea<br />

and Sue have been with <strong>MSWA</strong><br />

for nearly 20 years and have<br />

contributed amazingly to the<br />

success of the organisation. The<br />

growth in services and the ability<br />

to provide more supports to people<br />

with neurological conditions is only<br />

possible with dedicated people<br />

like Sue and Andrea and they can<br />

be truly proud of what they have<br />

achieved. Au revoir for now Sue<br />

and Andrea.<br />

As always, your feedback is<br />

important to us so if you have<br />

anything you would like to<br />

share please contact us on<br />

feedback@mswa.org.au or<br />

call 6454 3173.<br />

Stay safe.<br />

<strong>MSWA</strong> Client Forum <strong>2022</strong><br />





<strong>MSWA</strong> is proud to be funding this important West Australian research that will potentially<br />

provide the first effective treatment to minimise the damage that occurs in the early phases<br />

of stroke. We went straight to Professor Bruno Meloni, who heads Stroke Laboratory Research<br />

at the Perron Institute, and Department of Neurosurgery, Sir Charles Gairdner Hospital<br />

(SCGH) and spoke with him about his journey and research so far.<br />

“My passion for research started<br />

in 1985 after obtaining a Research<br />

Assistant position in a parasitology<br />

laboratory in the Veterinary School<br />

at Murdoch University. I was hooked<br />

from day one, so much so that I<br />

completed an Honours degree, PhD<br />

and a post-doctoral study with the<br />

team at Murdoch University.<br />

“In 1996, I was successful in<br />

obtaining a second post-doctoral<br />

position within the Department<br />

of Neurosurgery at SCGH, with the<br />

objective to establish a research<br />

laboratory with neuroprotection as<br />

its central theme, which I did with<br />

the head of Stroke Research, Clinical<br />

Professor Neville Knuckey. The<br />

laboratory was, and still is, based at<br />

the Perron Institute.<br />

“Over the next 25 years, my research<br />

centred on understanding the<br />

mechanisms involved in brain injury<br />

after stroke and the identification<br />

of potential neuroprotective<br />

targets to aid the development<br />

of new therapies to reduce<br />

injury. Through this research our<br />

laboratory identified a novel class<br />

of neuroprotective peptides known<br />

as cationic arginine-rich peptides<br />

(CARPs), which have great potential<br />

to be developed into therapeutics<br />

to minimise brain injury after<br />

stroke and related conditions, as<br />

well as chronic neurodegenerative<br />

disorders.<br />

“Currently, my focus is to progress<br />

the application of a CARP developed<br />

in my laboratory, known as R18,<br />

as a therapeutic to limit the brain<br />

injury that occurs in stroke. Stroke<br />

is the current leading and growing<br />

cause of acquired neurological<br />

disability and second leading cause<br />

of death worldwide. Each year,<br />

approximately 56,000 Australians<br />

will suffer new or recurrent strokes.<br />

To make matters worse, at present<br />

there are no clinically available<br />

neuroprotective drugs to minimise<br />

brain injury after stroke.<br />

“To help progress the development<br />

of R18 as a neuroprotective<br />

therapeutic, a spin-off company<br />

from UWA and Perron Institute was<br />

established. The company, Argenica<br />

Therapeutics, listed on the ASX<br />

in June 2021, and renamed R18,<br />

ARG-007.<br />

“To date both in vitro and in vivo<br />

(preclinical) safety and toxicity<br />

assessments of ARG-007 have been<br />

encouraging, and part of these<br />

studies have been supported by<br />

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

West Australian research. It is hoped<br />

a Phase 1 human safety study will<br />

commence later in the year. Planning<br />

is also under way for a Phase 2 study<br />

in stroke patients. It is anticipated<br />

that ARG-007 therapy could be given<br />

to stroke patients by ambulance<br />

paramedics before reaching<br />

hospital, as early intervention<br />

provides the best opportunity to<br />

minimise brain tissue damage,<br />

and allow more patients to benefit<br />

from clot dissolving treatments or<br />

removal of the clot via a catheter.<br />

Importantly, early intervention<br />

with ARG-007 could be particularly<br />

beneficial for people in rural and<br />

remote areas before transportation<br />

to a metropolitan hospital.<br />

“I am also optimistic that ARG-007,<br />

due to its unique and multiple<br />

neuroprotective<br />

mechanisms<br />

of action, has promise as a<br />

neuroprotective therapeutic for<br />

other acute disorders such as<br />

traumatic brain injury, and chronic<br />

conditions such as Alzheimer’s<br />

and Parkinson’s disease. In the<br />

meantime, the demonstration<br />

that ARG-007 can improve patient<br />

outcomes after stroke will be a<br />

career defining achievement and<br />

represent a bench to clinic research<br />

story that started 37 years ago in a<br />

parasitology laboratory.”<br />

To find out more about the<br />

projects <strong>MSWA</strong> is funding, head<br />

to mswa.org.au/news-research/<br />

commitment-to-research<br />




ROUND UP<br />





Read more at msaustralia.org.au<br />

Predictors of employment after<br />

the first episode of demyelination<br />

MS predominantly affects working<br />

age adults and has effects on many<br />

facets of life including family, work<br />

and social interactions. PwMS face<br />

significant employment-related<br />

challenges and understanding and<br />

preparing for these may improve<br />

later employment outcomes.<br />

This study was led by Professor<br />

Bruce Taylor and his research<br />

team at the Menzies Institute for<br />

Medical Research in Tasmania, as<br />

well as the AusLong group, which<br />

continued the work of the MS<br />

Australia-supported AusImmune<br />

study. Researchers set out to<br />

examine factors affecting the longterm<br />

pathways of employment<br />

outcomes. Many employment<br />

studies are short term, but this<br />

study followed participants for<br />

11 years after their first relapse to<br />

help us understand why these<br />

employment challenges occur in<br />

people with MS over time.<br />

/ Researchers followed 207 people<br />

for 11 years after their very first<br />

episode of central nervous system<br />

demyelination (FCD)<br />

/ From the data collected,<br />

researchers identified four<br />

distinct pathways of employment<br />

that are likely to occur after the<br />

first relapse<br />

/ Understanding the likely<br />

pathways for people with MS<br />

allows better management<br />

of adverse risk factors and<br />

potentially better employment<br />

outcomes<br />

What did the researchers find out<br />

about this group?<br />

Of the 207 participants, 78%<br />

progressed to clinically definite<br />

MS at the 5-year mark and 83% by<br />

the 10-year mark. At 10 years after<br />

the FCD, 74% of participants were<br />

employed and 17% were receiving<br />

a pension, compared to 87%<br />

and 1% at baseline. Additionally,<br />

average work hours had decreased<br />

from 31.6 hours to 21.2 hours per<br />

week. Statistical modelling of the<br />

data identified four employment<br />

pathways:<br />

/ Stable full-time (26.9%)<br />

/ Stable part-time (46.7%)<br />

/ Early deteriorated with early<br />

drop off in employment after<br />

FCD (15.3%)<br />

/ Late deteriorated with gradual<br />

decline after 5 years (11.1%)<br />





What does this all mean for people<br />

with MS?<br />

This research highlights four<br />

different pathways of employment<br />

status during the immediate decade<br />

following the first demyelinating<br />

event. For people experiencing<br />

other co-morbidities, a higher<br />

disability level in the first 5 years<br />

and a higher number of relapses,<br />

there are indicators that this may<br />

contribute to worse employment<br />

and work-hour outcomes further<br />

down the track. This highlights<br />

the immense value of modern<br />

disease-modifying therapies (DMTs)<br />

to reduce relapses and thereby<br />

potentially having a positive effect<br />

on work outcomes. Recognising<br />

and alleviating the adverse risk<br />

factors for poor employment<br />

outcomes may provide a<br />

mechanism for maintaining people<br />

with MS in the workforce and<br />

harnessing all the benefits that this<br />

brings. That is, reducing relapses,<br />

keeping co-morbidities under tight<br />

management and intervening<br />

early with DMTs. In essence,<br />

maintaining brain health in MS.<br />

Additionally, guides for employers<br />

and employees are now available<br />

on the MS Australia website.<br />


Read more at mstrust.org.uk<br />

Investigating the potential diseasemodifying<br />

and neuroprotective<br />

efficacy of exercise therapy early<br />

in the disease course of multiple<br />

sclerosis: The Early Multiple<br />

Sclerosis Exercise Study (EMSES);<br />

Mult Scler. <strong>2022</strong> Mar 16<br />

This study investigated the effect<br />

of early exercise on relapse rate,<br />

global brain atrophy and secondary<br />

magnetic resonance imaging (MRI)<br />

outcomes.<br />

The randomized controlled trial<br />

(n = 84, disease duration


When compared to women who<br />

had been pregnant but never<br />

miscarried, women with three<br />

or more miscarriages had a 35%<br />

higher risk of a non-fatal stroke and<br />

an 82% higher risk of fatal stroke.<br />

The researchers also found that<br />

infertility was associated with an<br />

increased risk of non-fatal stroke.<br />

Dr Mishra told Medical News Today<br />

that the mechanism responsible<br />

for the increased risk is an area of<br />

active research. “It could be due to<br />

common risk factors such as genetic<br />

factors, that might predispose<br />

women to both pregnancy loss and<br />

stroke events,” Dr Mishra explained.<br />

“It could also be due to endocrine<br />

dysfunction.”<br />



Read more at<br />

qimrberghofer.edu.au/apgs/<br />

Australian Parkinson’s Genetics<br />

Study (APGS) seeking participants<br />

Researchers at the QIMR Berghofer<br />

Medical Research Institute, with<br />

funding from the Shake It Up<br />

Australia Foundation and The<br />

Michael J. Fox Foundation, are<br />

undertaking<br />

ground-breaking<br />

research to help identify genetic<br />

factors influencing risk of<br />

developing Parkinson’s disease.<br />

This research, named the Australian<br />

Parkinson’s Genetics Study (APGS),<br />

will contribute towards the largest<br />

study of Parkinson’s genetics ever<br />

undertaken, the Global Parkinson’s<br />

Genetics Program (GP2).<br />

This revolutionary study will only<br />

be possible with the participation<br />

of thousands of real patients. The<br />

APGS researchers aim to recruit<br />

10,000 Australian residents (male<br />

or female) diagnosed with, and<br />

medically treated for, Parkinson’s<br />

disease and variants that influence<br />

a person’s risk of developing the<br />

condition and its various symptoms.<br />

This will enable the development<br />

of new, more effective, and more<br />

personalised treatments for<br />

the disease.<br />

Participation is strictly confidential,<br />

and all participant information<br />

provided will be maintained<br />

in accordance with Australian<br />

regulations. Eligible people are<br />

now able to participate in the<br />

study. To sign up to the Australian<br />

Parkinson’s Genetic Study, or to<br />

find out more information, visit<br />

geneticsofparkinsons.org.au<br />


Read more at mndaustralia.org.au<br />

MND Research Shorts; International<br />

Research Update: June <strong>2022</strong><br />

MND patients suffer breathing<br />

difficulties as the disease<br />

progressively worsens. Detecting<br />

problems with patient respiration<br />

earlier would lead to better<br />

outcomes for non-invasive<br />

ventilation. Dr Nathan Staff and his<br />

team carried out a test to compare<br />

methods to measure respiration to<br />

see which test could earliest detect<br />

alterations to respiration. They<br />

found that measuring overnight<br />

oximetry to detect small changes<br />

in oxygen levels was the most<br />

sensitive manner of determining<br />

early respiration issues in<br />

ALS patients.<br />





There are two numbers that every National Disability Insurance Scheme (NDIS) participant<br />

should keep front of mind. The first is Western Australia's average NDIS plan utilisation level<br />

sits at 73%. The second is the average amount that NDIS plan values are dropping according to<br />

the recent NDIS Quarterly Report is 4%. Why are these two numbers important and related?<br />

Because if the NDIA is looking to rationalise dropping plan values, a 27% under-utilisation could<br />

be mentioned as rational, and this will have an impact on participants' future health outcomes.<br />

So, why is plan utilisation so<br />

important?<br />

Because the NDIS has always been<br />

a ‘use it or lose it’ endeavour. Any<br />

funding not spent in NDIS plans<br />

goes directly back to the agency and<br />

participants will be forced to justify<br />

why they should receive the same<br />

level of funding again next year. I<br />

recently spoke to one family whose<br />

son’s plan had been impacted by<br />

underspend and it took them three<br />

years to get back to the original level.<br />

This is a widespread problem and<br />

one that may worsen as the Agency<br />

grapples with a growing financial<br />

commitment to Clients. Therefore,<br />

it’s not enough to have an NDIS<br />

plan, you must actively participate<br />

in managing your funding if you<br />

want to ensure your future needs<br />

are met.<br />

The first thing an active NDIS<br />

participant needs to know is how<br />

much you have in your plan, and<br />

equally importantly how much you<br />

have spent. Each NDIS participant<br />

has access to an online portal via<br />

my.gov.au where you can track your<br />

plan spending. While not as friendly<br />

as some websites, it is a useful tool<br />

in tracking how your plan spending<br />

is going.<br />

Once you know how much you<br />

have left it’s important that you are<br />

proactive if something happens to<br />

your services. Holidays, extended<br />

hospital stays, COVID-19 lockdowns,<br />

and outbreaks are all things that<br />

have the potential to interrupt your<br />

services. If these events happen,<br />

you should work with your service<br />

provider to identify additional or<br />

alternate services to make up the<br />

difference. Equally, if you decide to<br />

take a break from a service or want<br />

more of something, then let your<br />

provider know and they can work<br />

with you to reallocate your funding<br />

to meet your needs.<br />

It should be mentioned that the<br />

flip side of this scenario is also<br />

true. If you notice that your plan is<br />

being overspent due to changes<br />

to your condition or situation, it is<br />

important that you speak to your<br />

Support Coordinator, LAC, or <strong>MSWA</strong><br />

to start a change of needs process<br />

and adjust your roster of care to<br />

match your remaining funding.<br />

Unfortunately, in most cases, unless<br />

rectified, once your NDIS funding<br />

runs out it can impact access to<br />

your services.<br />

The world of funding can be<br />

confusing, however your assigned<br />

Client Liaison Coordinator is<br />

able to help you understand the<br />

various scenarios to make sure you<br />

are getting the most out of your<br />

allocated funding. This team also<br />

keeps an eye on funds allocated to<br />

<strong>MSWA</strong> to ensure you are tracking<br />

ok. Finally, if you are one of a<br />

growing list of participants with<br />

a Plan Manager, it's important<br />

to make sure they are aware of<br />

pricing changes and are active in<br />

helping you to keep in front of your<br />

utilisation and billing.<br />

The good news is that in most<br />

situations, it is relatively easy to<br />

adjust your plan allocations to<br />

ensure appropriate utilisation takes<br />

place. If you identify over/under<br />

spending concerns quickly enough,<br />

you should be able to ensure your<br />

services meet both your current and<br />

future needs and <strong>MSWA</strong> is available<br />

to help you in this endeavour.<br />





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



<strong>MSWA</strong> Client Chelsea<br />

Hopkins-Allan painting<br />

a Helena Gum Moth,<br />

Opodiphthera helena,<br />

the first big moth she<br />

ever painted [photo by<br />

Luke Griffiths]<br />

Chelsea Hopkins-Allan is an award-winning artist living and working in Albany. Here, in<br />

response to our questions to her, she talks about painting, creativity, and how – for her –<br />

developing these things was a response to having an undiagnosed rare neurological<br />

condition called hypokalemic periodic paralysis (HKPP).<br />

What is hypokalemic periodic<br />

paralysis?<br />

HKPP in a neurological condition<br />

that impacts the regulation of the<br />

potassium levels in your blood.<br />

Potassium in your blood needs<br />

to be kept within a certain range<br />

for your muscles to work properly<br />

but various factors can cause it to<br />

temporarily drop too low.<br />

There are different types of periodic<br />

paralysis and related conditions.<br />

What symptoms led to your<br />

diagnosis?<br />

I had episodes of muscle weakness<br />

and paralysis. With HKPP, weakness<br />

can vary from mild to quite severe,<br />

lasting hours or days at a time, and<br />

can mean you can't walk without<br />

your legs giving out or lift your arms<br />

and many basic things can become<br />

difficult. Paralysis is like fainting but<br />

not losing awareness – you can feel,<br />

hear and see, and it can last hours.<br />

It is incredibly frustrating and quite<br />

frightening, especially when you<br />

don't understand the cause. Fatigue,<br />

mental fogginess and feeling unwell<br />

generally accompany the muscle<br />

symptoms (as your electrolytes are<br />

severely out of whack). I would wake<br />

up every morning feeling like I had<br />

a bad hangover! Every day was a<br />

struggle to manage the most basic<br />

things. Keep in mind – this is without<br />

treatment, so getting a diagnosis<br />

is vital!<br />

There are also multiple triggers<br />

that lower potassium in HKPP,<br />

that you need to know about to<br />

manage. (NB: These symptoms can<br />

vary somewhat for different people<br />

with HKPP. Some people only<br />

get paralysis in one part of their<br />

body for example or get less<br />

frequent episodes).<br />

Despite seeing over thirty doctors<br />

and specialists and a taking a<br />

multitude of tests, I didn’t get a<br />

diagnosis for over ten years. This<br />

meant I didn't get any medication,<br />

treatment, management support,<br />

relevant allied health services,<br />

mobility aids or NDIS. Many doctors<br />

told me it was purely psychological,<br />

despite the severity of my symptoms<br />

and my insistence that this was<br />

not the case, so it was a difficult<br />

ten years. I finally got a diagnosis<br />

last year and my life is changing<br />

dramatically for the better!<br />


What was going on in your life<br />

when you first became unwell?<br />

I was 24 years old and working as<br />

an environmental scientist for a<br />

hydrogeological consultancy in<br />

Perth. I had a full life and a healthy<br />

lifestyle. Over the years, I had been<br />

to the GP repeatedly about my<br />

fatigue and mental fogginess. But<br />

after a few basic tests – like iron<br />

and thyroid – they would tell me I<br />

was fine, that I must be depressed!<br />

Even though I kept telling them it<br />

was the fatigue causing difficulties<br />

and worries in my life, not the other<br />

way around.<br />

Over the next few months, I kept<br />

feeling worse and bit by bit I had<br />

to reluctantly drop all my activities<br />

just to maintain my job. My health<br />

continued to decline and eventually<br />

I lost my job as I was too sick to<br />

work in the office, let alone pass the<br />

necessary medical for upcoming<br />

field work. One weekend around<br />

that time, I collapsed after trying to<br />

go for a short walk. That's when the<br />

medical tests, hospital and doctors’<br />

visits got underway.<br />

What led you to painting?<br />

One of the earlier tests I had to get<br />

was an MRI. Inside the machine –<br />

with the rotating thump thump<br />

thump – I needed a focus for my<br />

thoughts. So, I decided to imagine<br />

all the things that made me happy.<br />

I recalled the time I saw a butterfly<br />

wing under the microscope at<br />

university. Their wings are covered<br />

in tiny multicoloured scales, like<br />

artwork in its own right! Just the<br />

memory of this made me feel joy,<br />

awe and wonder, in spite of the<br />

circumstances.<br />

It really helped me. And when<br />

the weeks dragged into months<br />

and then years with so many<br />

tests, doctors, hospital visits and<br />

appointments but no diagnosis – I<br />

kept making them. The paintings<br />

got larger and larger and more<br />

detailed. I wasn't well enough<br />

to work physically and I felt so<br />

exhausted and foggy, making art<br />

when I was able felt like the only<br />

thing I could do. I also started selling<br />

my paintings.<br />

How did your work evolve from<br />

there?<br />

A few years later, I heard a ‘thunk’<br />

on the window and went outside to<br />

investigate. It was a magnificent big<br />

moth. It had shredded wings but<br />

it was still trying to fly. I thought it<br />

was beautiful despite its damaged<br />

wings.<br />

It felt like a symbolic reminder to<br />

have courage, keep fighting and<br />

trust myself that there would be<br />

answers in my health journey. I’d<br />

felt very blamed and shamed by<br />

many of the doctors for my health<br />

problems and this moth was<br />

struggling to fly but still so beautiful.<br />

I decided to make huge moth<br />

paintings of the species that came<br />

to my back door. It was really<br />

difficult given my symptoms at the<br />

time. I had to paint in short sessions.<br />

But I think I had felt so invisible<br />

during all these years of illness, I<br />

wanted to create something bigger<br />

than myself that felt powerful to<br />

me personally. Here were these<br />

incredible creatures coming to ME<br />

when I felt so cut off from wildlife<br />

and nature. It was just a matter of<br />

scale and perception. So I made<br />

them huge, showing all their tiny<br />

magical scales and details.<br />

That night, I decided to make a<br />

symbolic reminder of the butterfly<br />

wing-scales. Not with the intention<br />

of being art, just as a sort of visualpsychological<br />

tool to trigger these<br />

feelings to help me stay positive;<br />

as a reminder that the world is a<br />

magical place.<br />

Butterfly Wing-Scales No.46 by Chelsea Hopkins-Allan<br />


Are there ways your art and<br />

neurological condition intertwine?<br />

I know I never would have painted<br />

if I had ‘normal’ health. I wouldn't<br />

have been able to sit still with it for<br />

so long!!! I would have preferred to<br />

do one hundred other things.<br />

I am definitely NOT going to say<br />

this was ‘meant to be’ or ‘all worked<br />

out’. It was terrible, it sucked. What<br />

I do know is, I am glad I found art.<br />

It helped me to survive mentally<br />

(and financially). I took something<br />

difficult in my life and I created, in<br />

spite of it all.<br />

And I am very grateful for all those<br />

who supported me in this in various<br />

ways. I suspect most of them never<br />

knew how much I needed it.<br />

What has art given you?<br />

When I first started painting, I liked<br />

that people asked me about my<br />

art instead of my health or showed<br />

me pictures of cool moths they<br />

found (and collected dead ones for<br />

me – haha!). Art also gave me more<br />

connection to community through<br />

exhibitions and online via social<br />

media with collectors, creators and<br />

nature lovers all around the world.<br />

This gave me a sense of extended<br />

community when I was often stuck<br />

at home on my own. It also gave<br />

me some escape from reality and<br />

helped me cope with my symptoms.<br />

Spending a lot of time in hospitals<br />

and waiting rooms also gave me a<br />

huge appreciation for what a bit of<br />

art and colour can do to your mood<br />

in a space.<br />

What would you share with fellow<br />

<strong>Bulletin</strong> readers about creativity?<br />

I loved a recent quote from famous<br />

art critic, Jerry Saltz. He said, “Artists;<br />

you do know, don't you, that your<br />

mistakes are your style”. To me, I<br />

apply this to disability: if you have<br />

limitations that impact how you do<br />

something, maybe try to work with<br />

them and make them part of your<br />

work and your style.<br />

There are a million ways to be<br />

creative, and a million niches or<br />

ways to channel your interests,<br />

insights, need for self-expression or<br />

to have a voice within this. Painting,<br />

drawing, sculpture, music, singing,<br />

crafts, textiles, dance, theatre,<br />

writing, poetry, flavours, scents,<br />

fashion…<br />

You don't need to be ‘good’<br />

at something. Creativity is a<br />

process of discovery. You can be<br />

as conventional and traditional,<br />

or unconventional as you want.<br />

Experiment widely or find a niche.<br />

Creativity can also be a way to<br />

engage in something you maybe<br />

can't do in the same form anymore.<br />

It could be a social connection, a<br />

connection to your passions, or<br />

both. Maybe there’s something you<br />

feel strongly about where you want<br />

to share your insights, communicate<br />

and make your voice heard. Make it<br />

what you need.<br />

I believe humans are innately<br />

creative and our struggle for<br />

survival and self-understanding is<br />

a critical part of this process – look<br />

at the massive scope of art and<br />

creativity in all forms across culture<br />

and human history! We are a part of<br />

that and it’s no different in ‘modern<br />

times’, we just have more art forms<br />

and more possibilities for expression<br />

available to us.<br />

Do you have a career highlight?<br />

I won a Great Southern Art Award in<br />

2017 for one of my ‘scale’ pieces. As<br />

part of this, I got a fully supported<br />

exhibition by the City of Albany. I<br />

also had the opportunity to have<br />

a mentor for the duration of the<br />

exhibition, Paul Moncrieff. (The<br />

mentorship was one of 50 regional<br />

arts mentorships undertaken<br />

thanks to the ground-breaking<br />

Regional Arts Partnership Program<br />

by the State Government / Country<br />

Arts WA).<br />

I based the exhibition on huge<br />

moths – all local species. Then this<br />

went on tour around regional WA.<br />

Describe your studio space.<br />

I am lucky there is a big shed<br />

in this current rental house. I<br />

sectioned it off with a drop sheet<br />

and a shelving unit. I painted MDF<br />

boards with white paint and, with<br />

help, stuck them up to one wall. It<br />

does get pretty hot and cold being<br />

uninsulated, which affects my<br />

health, so I can't always work out<br />

there. In which case I get computer<br />

admin done or can make small<br />

things at the kitchen table, but this<br />

is more limited due to the mess<br />

factor. I finally got my power chair<br />

last week so it should make a huge<br />

difference in how long I can work.<br />

I'm really looking forward to having<br />

a space to work in that is a bit easier<br />

for me health-wise in the future.<br />

My two dogs, Jazz and Django,<br />

and my little parrot Opal [pictured<br />

above] are constant companions!<br />



After 18 years on the <strong>MSWA</strong> Board, with 18 months of those as President, Ros Harman has<br />

announced her resignation from the Board and the position of President.<br />

During her time on the Board,<br />

Ros, who has also been a Client of<br />

<strong>MSWA</strong> for 34 years, has contributed<br />

significantly to our Purpose<br />

of empowering people with<br />

neurological conditions to live their<br />

best lives.<br />

The Board and the organisation<br />

thank Ros for her service and<br />

contribution and wish her very well<br />

for the future as she focuses on her<br />

family and her health.<br />

Mr Horst Bemmerl, <strong>MSWA</strong> Board<br />

Director, steps in as acting President<br />

until further notice.<br />



Like many organisations across Perth dealing with<br />

the implications of COVID-19, we understand there<br />

has been a lot of disruption to our services. We would<br />

like to say a big thank you for your patience as we<br />

navigate through unprecedented times – we have<br />

received a great deal of support and understanding<br />

from you.<br />

There has been a lot going on behind the scenes –<br />

all of our staff have been trained how to correctly<br />

‘don and doff’ full PPE, including gowns, masks,<br />

glasses, face shields and gloves. We have been<br />

issuing supplies of regular PPE – all to keep our staff<br />

and Clients as safe as possible.<br />

For the past three months we have been conducting<br />

‘RAT surveillance’ – we are regularly supplying our<br />

staff with stocks of rapid antigen tests and they<br />

have been testing and recording the result every<br />

three days. Our staff have been very committed to<br />

this, which has been a key COVID-19 management<br />

strategy for our team.<br />




Farewell<br />

Sue Shapland<br />

It is with a great deal of sadness and gratitude that we say goodbye to<br />

Sue Shapland, after nearly two decades spent serving people in WA living<br />

with neurological conditions.<br />

Many of you will know Sue Shapland due to the hands-on and<br />

compassionate approach she upheld in all her roles at <strong>MSWA</strong> over the last<br />

19 years. Not to mention the valuable and vital written contributions she<br />

has made to publications like <strong>Bulletin</strong>, earnestly ensuring Clients and their<br />

carers are across the latest neurological research ,and providing regular<br />

information and updates.<br />

Not only is Sue incredibly well-respected nationally and in WA as a<br />

professional in the disability sector, she is an incredibly giving, kind and<br />

committed person, who has contributed so much to the growth of <strong>MSWA</strong>’s<br />

services and support.<br />

On behalf of our Clients, staff, volunteers and supporters past and present –<br />

‘Thank you, Sue!’<br />




INTRODUCING <strong>MSWA</strong>’S<br />


<strong>MSWA</strong> is excited to add the Employment Support Service to our service portfolio. This is a<br />

free service for Clients to access and is funded by the Department of Education, Skills and<br />

Employment (DESE).<br />

This new service currently supports<br />

Clients living with multiple sclerosis,<br />

and we are working towards<br />

expanding to support other<br />

neurological conditions as soon as<br />

possible.<br />

The <strong>MSWA</strong> Employment Support<br />

Service is the only specialist<br />

employment service for people<br />

living with multiple sclerosis in<br />

Western Australia and can help you<br />

to stay in your current job or find<br />

employment in the open labour<br />

market.<br />

Currently we service within the<br />

Perth Metropolitan region only.<br />

Our team includes allied health<br />

professionals and an employment<br />

consultant with a specialised<br />

knowledge of MS.<br />

There are two servicing options<br />

within the program:<br />

1) Job Search – Is designed to<br />

support Clients in their journey<br />

to gain open employment and<br />

all the steps to find work and<br />

become ‘job ready’.<br />

This can include resumé and<br />

application writing, assistance<br />

with looking for jobs, and interview<br />

preparation.<br />

To access the Job Seeker service,<br />

Clients need to:<br />

/ Have a diagnosis of MS<br />

/ Have a Centrelink Customer<br />

Reference Number (CRN)<br />

/ Have an NDIS plan or be<br />

commencing the process of<br />

applying for an NDIS plan<br />

/ Be focused on actively looking for<br />

work with support and assistance<br />

2) Work Assist – Is provided by our<br />

allied health team to support<br />

Clients who are at risk of losing<br />

their job due to the impact of<br />

their MS symptoms.<br />

This could include a range of<br />

supports including discussions<br />

about disclosure, workplace<br />

advocacy and support, clinical<br />

interventions including mobility<br />

and ergonomic assessments at<br />

work, and assistance to obtain<br />

workplace equipment via the<br />

Employment Assistance Fund (EAF)<br />

through Job Access.<br />

You are not required to disclose<br />

your disability to your employer to<br />

receive support.<br />

To access the Work Assist program,<br />

Clients need to:<br />

/ Be currently employed and<br />

working 8 hours per week<br />

/ Have a diagnosis of MS<br />

/ Have some difficulty in completing<br />

the inherent requirements of their<br />

work role due to their symptoms<br />

and/or at risk of losing their job<br />

due to their disability<br />


<strong>MSWA</strong>’s Employment Support Service was recently awarded a DES 5-star<br />

award at the CoACt conference in Brisbane. This award recognises our<br />

performance against two of the three Key Performance Indicators:<br />

/ Efficiency indicator which seeks to minimise the average times taken<br />

to achieve employment outcome for participants<br />

/ Effectiveness indicator which seeks to maximise the number of<br />

outcomes achieved by participants<br />

Left: Leigh McCaffrey, Employment Support Services Manager, and Carol<br />

Chong, Allied Health Manager, pictured with the DES 5-star award.<br />


Peta Flynn and Leigh McCaffrey from <strong>MSWA</strong>’s new Employment Support Service.<br />

OUR TEAM:<br />



Leigh is a physiotherapist and has worked within multiple clinical settings across Metropolitan and Regional<br />

Hospitals in addition to working in the NHS in the UK in both England and Scotland. He spent 10 years working<br />

at Multiple Sclerosis Limited in Victoria as the Senior Neuro Physio and as a senior clinician with the Employment<br />

Support Team at MSL before moving to Perth.<br />



Peta is an occupational therapist who has previously supported people who have MS with their NDIS goals. Prior<br />

to moving to <strong>MSWA</strong> she worked in private practice, working with veterans to improve their mental and physical<br />

health for improved quality of life and to re-engage with meaningful employment or maintain their current<br />

employment. This work resulted in Peta receiving the Australian Rehabilitation Providers Association (ARPA)<br />

Best New Starter Award for WA. Peta has a special interest in pain management which is supported by a Bachelor<br />

of Science (Psychology) and Master of Occupational Therapy.<br />

Leigh and Peta joined <strong>MSWA</strong> in 2021 and have a good understanding of typical MS symptoms and how they<br />

impact Clients on a day-to-day basis in their pursuit of work.<br />

If you have any questions or would like further information, please contact us via email<br />

employment.services@mswa.org.au or phone 1300 865 209.<br />





Ben Chenery outside the<br />

new Nautica Residences<br />

by Seashells, a shortstay<br />

accommodation<br />

concept started and now<br />

managed by Ben.<br />

“People give up on their job because they don’t want to be a burden on other people. They<br />

don’t realise that employment support is an option.”<br />

Ben Chenery’s life changed overnight<br />

when he woke up paralysed on his<br />

whole left side on 1 April 2018. “April<br />

Fools Day,” remarks Ben. “I spent four<br />

months in and out of ICU and state<br />

rehab. They thought I’d had a stroke.”<br />

But nine weeks into his stay in<br />

hospital, Ben was diagnosed with<br />

tumefactive MS – a rare type of MS<br />

where the ‘tumour-like’ lesions are<br />

greater than 2.0 cm in the brain.<br />

It was the beginning of a long road<br />

of rehabilitation for Ben, who loved<br />

kickboxing training, exploring new<br />

areas on weekends, and was a busy<br />

professional with a career he was<br />

passionate about.<br />

After discharge from hospital,<br />

Ben went back to work as General<br />

Manager of Seashells Mandurah.<br />

“I worked a few hours a day at first.<br />

Luckily, 75% of my job is done on<br />

a computer. But the thing was, I<br />

couldn’t type. I’d lost my sense of<br />

grammar. That’s when Leigh came<br />

in to help me sort out my work and<br />

my life.”<br />



Employment Support Manager Leigh<br />

McCaffrey has provided Ben with<br />

support for nearly four years – initially<br />

under the banner of Coact, which has<br />

recently transitioned into <strong>MSWA</strong>’s<br />

Employment Support Service.<br />

“Leigh came down to the office and<br />

started assisting me. He organised<br />

ergonomic chairs, Dragon software,<br />

special noise cancelling headphones.<br />

He was hands-on with my boss and<br />

answered all his questions about how<br />

he could support my recovery. And he<br />

reduced the financial burden of my<br />

employer to keep me in the workforce.”<br />

Ben’s boss, Gareth Thomas, CEO<br />

of Seashells Hospitality Group,<br />

explains, “Knowing that Ben was<br />

supported independently of his<br />

work environment by someone like<br />

Leigh who could work with both of<br />

us to ensure his continued success,<br />

was vital to how we approached the<br />

challenges that were presented for<br />

Ben at work. As an employer, this<br />

was a totally new situation for us,<br />

and we had no idea as to the support<br />

Ben would need. It gets right down<br />

to the chairs he sits on, the mouse<br />

and keyboard he uses, the software<br />

that may help him. Having someone<br />

independently guide Ben also<br />

meant that they were independently<br />

guiding us on what we needed<br />

to do to assist Ben. It helped us to<br />

understand the challenges that were<br />

ahead for Ben.”<br />

Ben affirms, “An employment<br />

support worker is someone you can<br />

turn to who’s not your boss. I met<br />

Leigh for a coffee once a week. He<br />

got me a healthcare card to make<br />

my medication cheaper. He started<br />

the process for NDIS planning.”<br />

Ben’s application to the NDIS was<br />

initially rejected so Leigh secured<br />

other funding to cover 80% of Ben’s<br />

remedial physiotherapy costs. “It<br />

made a big difference,” says Ben.<br />

Leigh explains, “Most Clients we see<br />

are newly diagnosed and we can<br />

access funding for early intervention.<br />

They get support through us and,<br />

over time, they qualify for an NDIS<br />

plan. Then they can use other<br />

services concurrently. There’s a gap<br />

in the early intervention support that<br />

we try to fill.”<br />

This was exactly the situation for Ben.<br />

In December 2019, Leigh messaged<br />

Ben saying, “Merry Christmas – check<br />

your emails!” Unknown to Ben, his<br />

NDIS application had been appealed<br />

and gone through.<br />


“By mid-January I had a formal<br />

planning meeting, just like that!”<br />

explains Ben. “It suddenly opened<br />

up funding to services like exercise<br />

physiology, MS groups, remedial<br />

massage, a cleaner.<br />

“I had the support I needed to recover<br />

and to keep working.”<br />



Over the next 16 months Ben<br />

was promoted to Area General<br />

Manager (Perth) running Seashells<br />

Scarborough Apartments and<br />

assisting two other locations. Then<br />

COVID hit.<br />

“Leigh stepped in again, helped me<br />

set up my home office so I could<br />

work remotely. After that, if I had a<br />

bad day, I could work from home and<br />

still be very functional.”<br />

Once again, his boss was nothing but<br />

supportive.<br />

“Gareth never changed the way he<br />

treated me. I held on to that. I’d ask<br />

if I got stuck. And he made efforts to<br />

double check my grammar and my<br />

writing if required.<br />

“Looking back, I know that keeping<br />

my mind engaged with work was a<br />

massive part of my recovery.”<br />

In March 2021, Ben helped Seashells<br />

to further develop and improve a new<br />

short-stay accommodation business<br />

model called ‘Nautica Residences by<br />

Seashells’. Ben was given full autonomy<br />

to grow and run the new brand.<br />

“I started working on that project from<br />

home to build the new company.<br />

Then we took full management<br />

rights of Hillary’s Harbour Resort<br />

and turned them into a managed<br />

apartment service. Gareth gave<br />

me free reign – from building the<br />

website to the computer systems. He<br />

trusted me to build a new brand and<br />

launch it.”<br />



Today, Ben’s main lesions are<br />

dormant. Regular Ocrevus injections<br />

– together with physical therapy –<br />

have been of great benefit.<br />

“Late afternoon I get tired, and my<br />

fingers double tap the keyboard. I<br />

take modafinil to help concentration.<br />

There’s less bad days if I keep up the<br />

training regimen.<br />

“My left leg gives me trouble when I’m<br />

walking – the muscles around my hips<br />

lock from the training I need to do.<br />

“The last four years have been about<br />

just getting to where I am now. I’m at<br />

that point in my rehab now that I can<br />

do most things.”<br />

Ben reveals that a previous<br />

relationship broke down soon after<br />

his MS diagnosis. “They didn’t think<br />

I’d walk again correctly because of<br />

the MS. Some relationships survive<br />

a life-altering event, some don’t. But<br />

none of that matters because I’m<br />

with the most amazing woman right<br />

now.”<br />

Ben grins as he speaks about his<br />

partner Bliss, who he first met in<br />

late 2019. “Half the time she forgets I<br />

even have MS! She never makes me<br />

feel funny about it. She jokes that I’m<br />

more functional than most of the<br />

men she’s met!”<br />

He attributes this somewhat to the<br />

fact that he’s a keen home cook<br />

– “Preparing food is like physical<br />

therapy for your hands.”<br />


Ben says his attitude is what got him<br />

through the tough times. “Don’t give<br />

up. Try your hardest. Your own personal<br />

positivity will open doors for you.<br />

“A lot of people who are newly<br />

diagnosed think they’ll end up in a<br />

wheelchair, but with the right training<br />

you can improve your strength and<br />

be very functional.<br />

“I can’t do kickboxing any more, but<br />

I can still train and do boxercise and<br />

other things that are good for my<br />

health. It’s good if you can train with<br />

like-minded people who understand,<br />

like at <strong>MSWA</strong>. You don’t have to fake<br />

it if you’re having a bad day.”<br />

Ben explains that he’s had bad<br />

moments where he’s felt broken,<br />

but that it’s how he chooses to act<br />

afterwards that’s important.<br />

“Stop being so proud. Ask for help,<br />

or how will people know you’re<br />

struggling? People will stand up if<br />

they know what they need to do to<br />

help you.”<br />

As well as Employment Support, Ben<br />

accesses Physiotherapy and Support<br />

Coordination services at <strong>MSWA</strong>.<br />

“Not knowing where to get support<br />

was the biggest hurdle I faced in<br />

the first 6 – 12 months. If it wasn’t for<br />

Leigh, I probably would have given<br />

up on a few things.<br />

“I’ve got my things in place and the<br />

right people around me.”<br />


Ben is clear when it comes to the<br />

difference that support from his<br />

employer has made to his recovery<br />

and his sense of self. “My boss Gareth<br />

never treated me any different. That<br />

pushed me on.”<br />

Gareth elaborates, “Nothing should<br />

change. If you valued your employee<br />

prior to a diagnosis, why should a<br />

diagnosis of a neurological condition<br />

change anything? There are support<br />

services immediately available to not<br />

only assist your employee in all facets<br />

of their life, but to assist you too as their<br />

employer. Keeping a flexible workplace<br />

to allow for attendance at treatments<br />

etc is vital, but your employee will<br />

appreciate this and will reward you by<br />

maximising their productivity at other<br />

times. Be flexible, treat your employee<br />

as you always did, work with them to<br />

ensure they remain active, productive<br />

and a valued employee, and the<br />

rewards far outweigh the issues.”<br />

Ben adds, “Don’t write off your most<br />

loyal, brilliant staff members by not<br />

working with them to keep them in<br />

the workforce.”<br />

If you’re living with MS and<br />

think you may benefit from<br />

<strong>MSWA</strong>’s new Employment<br />

Support Service, please contact<br />

employment.services@mswa.org.au<br />

or phone 1300 865 209.<br />







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

When I hear the words ‘self-care’, the person that first springs to mind is Kanye West! This<br />

rap artist and musical genius (apologies reader if you disagree) is known as the epitome of<br />

self-love, and self-care. I guess it helps when you have an entourage of people supporting<br />

everything you do. For the average Joe it can be harder to take care of yourself or have your<br />

own back when you’re smack bang in the middle of a life change or transition.<br />

In the past few years, we have<br />

experienced an incredible amount<br />

of collective change. Between<br />

COVID-19 lockdowns and changing<br />

isolation periods, to mask-on or<br />

mask-off mandates, and having<br />

different devices that we either<br />

must shove up our noses or spit into<br />

for a rapid antigen test. Maybe you<br />

have a loved one who was recently<br />

diagnosed with a neurological<br />

condition, or you yourself have had<br />

to change medications or doctors.<br />

Some of you may have had to say<br />

goodbye to old therapists, support<br />

staff, and say ‘hello’ to new ones.<br />

Depending on the circumstance,<br />

change can feel scary, and<br />

overwhelming. Being able to take<br />

care of you during these moments<br />

is crucial to navigating the tide.<br />

So how do you look after you, when<br />

the change around you doesn’t<br />

stop, or when you’re hit with<br />

unexpected news?<br />

For a lot of people, being able to go<br />

back to basics is important. Selfcare<br />

isn’t always about doing what’s<br />

‘healthy’, instead self-care can<br />

be anything you need to do that<br />

reminds you of who you are and reconnecting<br />

with different parts of<br />

your identity. Maybe for you it’s the<br />

dancer in you, the wine enthusiast,<br />

the inner traveller, the diehard<br />

Star Trek nerd, the painter, or the<br />

garage sale enthusiast. When we<br />

think about self-care the question<br />

is not ‘what can I do to be healthy?’<br />

But rather, ‘what can I do to show<br />

some love and attention to the<br />

part of myself that makes me feel<br />

like me?’<br />

For some people this is as simple<br />

as turning on your favourite song,<br />

and dancing around the house<br />

pretending to be ‘Baby’ from Dirty<br />

Dancing, buying a coffee rather than<br />

making one at home, embracing<br />

your spontaneity and going for<br />

a walk in a different location, or<br />

saying yes to a movie marathon<br />

at midnight with no interruptions.<br />

Whatever it is, change is a constant,<br />

and being able to ground yourself<br />

in what nourishes you and reminds<br />

you of who you are, can make the<br />

ride a little easier to bear.<br />

So now it is your turn.<br />

What parts of you need<br />

attention this month?<br />

And what do you need to<br />

do to show some love to<br />

those parts of you?<br />

What does it mean for you<br />

to love yourself like Kanye<br />

loves Kanye?<br />


THE GIFT<br />



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

Maybe you have taken a moment for self-care when you’ve felt tired, or have taken a day off<br />

during the week where you do something fun and feel rejuvenated. Have you tried creating<br />

a pause, a small mindful moment of rest in your busy day?<br />

Maybe you’ve heard of mindfulness<br />

or grounding techniques, or read<br />

about the research that suggests<br />

its role in helping to manage stress.<br />

Maybe you’ve even tried practicing<br />

mindfulness.<br />

We live in a fast-paced world, with<br />

many stressors, and sometimes we<br />

forget to check in with ourselves.<br />

A practice such as mindfulness<br />

can help slow us down, develop<br />

stability and focus some attention<br />

on ourselves. If we can pause and<br />

notice the flow of life as it is and let<br />

it come and go – just observing and<br />

noticing – this may assist with some<br />

of our responses. In times of distress<br />

we may be overthinking, feeling<br />

overwhelmed, or overreacting.<br />

A pause can help us to anchor<br />

ourselves and provide the needed<br />

space to calm our minds. We then<br />

can consider our choices before<br />

responding.<br />

Try to pause in your day, take a<br />

breath, acknowledge your thoughts<br />

and feelings. Let them be, to<br />

observe, meeting the moment as<br />

it is. Be fully present, be aware of<br />

where you are, what you are doing<br />

without criticism or judgement.<br />

Be compassionate with yourself as<br />

the moment comes and goes.<br />

Try building into your day the habit<br />

of stopping. It may require you to<br />

practice the pause, to reconnect<br />

with yourself. If we practice it three<br />

or four times a day, it can help<br />

build the habit of slowing down.<br />

Small mindful habits that you can<br />

practice daily:<br />

/ Holding a mug of tea in both<br />

hands and feeling its warmth.<br />

Do not rush drinking it, enjoy the<br />

aroma, take small sips and take<br />

your time tasting each mouthful.<br />

/ Put on a piece of music and give<br />

it all your attention. Listen to the<br />

words and try to pick out all the<br />

different musical instruments<br />

that are being played.<br />

/ Pat your pet. If you have a dog or a<br />

cat, or other furry friend, run your<br />

fingers through their fur. Feel<br />

their warmth and the softness of<br />

their coat.<br />

/ Wherever you are – lying, sitting,<br />

or standing – feel what is under<br />

you, such as your feet on the floor<br />

or how your body is contacting<br />

the chair or bed. Take note to take<br />

slow deep breaths and relax your<br />

body into it.<br />

<strong>MSWA</strong> has a counselling service<br />

that can assist you with the many<br />

stresses of life and support you with<br />

the mindfulness and grounding<br />

techniques discussed in this article.<br />

To make an appointment please call<br />

9365 4836.<br />

“Mindfulness is about training<br />

yourself to pay attention in a<br />

specific way. When a person is<br />

mindful, they: (1) focus on the<br />

present moment, (2) try not to think<br />

about anything that went on in the<br />

past or that might be coming up in<br />

future, (3) purposefully concentrate<br />

on what’s happening around them,<br />

[and] (4) try not to be judgemental<br />

about anything they notice, or<br />

label things as ‘good’ or ‘bad’”<br />

(Moore, 2019).<br />


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




The cold mornings and shorter days can start to take their toll in winter. We asked some of<br />

our Clients for their top tips for staying active and motivated:<br />

I am inspired every morning by the thought of my first hot cup of tea and by my dog asking for her<br />

breakfast. This always gets me up and going.<br />

Lesley Murray<br />

I celebrate that I’m able to get out of bed when it is cold by doing the Hokey Pokey every day, and if you<br />

know your left from your right, you know you’re cognitively ok!<br />

Ian Cordingley<br />

My hands get really dry over winter which stops me from doing things I love, so to get me through I use<br />

Dermal Therapy Hand Sanitising Cream – two products in one for your handbag.<br />

Jasmin Franklin<br />

I wear my bed socks when I go to bed at night which keep my feet toasty and warm, and sometimes I have<br />

been known to wear them all the next day too. Shhh don’t tell anyone!<br />

Teresa Killeen<br />

Every morning I go across the road to the retirement village and walk a dog who belongs to a lovely<br />

91-year-old lady.<br />

Warren Black<br />

Go and visit the grandkids – that gets you going!<br />

Stephen McKay<br />

My head and brain absolutely love the cool weather as no fatigue and befuddlement! But my body is not<br />

the best in the cold weather. It's very stiff and sore in the mornings. I stretch in bed and again as soon as my<br />

feet hit the floor, using the bed to help support me until I can loosen up. Over winter I also take advantage<br />

of the massage therapists at Wilson every fortnight to keep me limber.<br />

Tracey Hockey<br />


MY LIFE AT <strong>MSWA</strong><br />

Having recently resigned from the Board, Ros Harman reflects on her journey with <strong>MSWA</strong><br />

so far.<br />

I was diagnosed with multiple<br />

sclerosis in April 1988. My neurologist<br />

suggested I join the MS Society as<br />

it was called then. Later it became<br />

<strong>MSWA</strong>.<br />

I mostly did physio, which I still do<br />

today, and I’m sure it has helped me<br />

remain able to live in my own home<br />

independently.<br />

On the first day I joined, I was<br />

introduced to Greg Brotherson, who<br />

on hearing I was an English teacher<br />

in a high school suggested I start<br />

writing articles for the MS <strong>Bulletin</strong><br />

magazine. This is something I have<br />

continued to do until this day.<br />

I was very pleased to meet Greg<br />

right at the beginning of my journey<br />

with MS, as he was an inspiration<br />

to me and many others. In 2004<br />

he suggested that I nominate for<br />

a position on the Board of <strong>MSWA</strong><br />

which I did, and I have been there<br />

ever since. I have just recently<br />

resigned.<br />

Over the years I have met a lot of<br />

interesting people. In physio I met<br />

other people with MS and some of<br />

them became good friends. I am<br />

still friends with Trudi Fay, whose<br />

children played with my daughter<br />

Eleni when they were young.<br />

Trudi and I have a lot in common<br />

and still enjoy getting together for<br />

a chat from time to time. Trudi’s<br />

husband Michael is now also on the<br />

Board of <strong>MSWA</strong>.<br />

On the Board I met many<br />

interesting people, some with MS<br />

and others without. One of those<br />

was Bill Hassell, who often butted<br />

heads with me as he was a former<br />

Liberal politician and I am a hard<br />

and fast Greenie. Nevertheless, we<br />

are friends and I was inspired by his<br />

dedication to <strong>MSWA</strong> and the Board.<br />

Over the years I have also met many<br />

different staff members, including<br />

physiotherapists and occupational<br />

therapists who have helped me<br />

with advice about equipment. I<br />

have also met community nurses<br />

who have more general advice<br />

about my health. I have been lucky<br />

in one sense in that while my MS<br />

has progressed, I am still able to live<br />

independently at home on my own.<br />

I am convinced that meeting people<br />

who share the same condition that<br />

I do has helped me immensely.<br />

Being able to talk to others who<br />

have an understanding of a similar<br />

condition is beneficial in so many<br />

ways.<br />

When I first joined the MS Society,<br />

its fundraising was mostly the $3<br />

raffle with a car as first prize. I have<br />

been buying these tickets forever<br />

and have never won anything! Soon<br />

after Marcus Stafford became CEO<br />

we started doing the Mega Home<br />

Lottery which has been a very<br />

successful source of income for<br />

<strong>MSWA</strong>, providing finances to fund<br />

services to our Clients. As a Board<br />

member I wasn’t allowed to buy<br />

those tickets, so of course I never<br />

won anything there either!<br />

I will always be very<br />

grateful to <strong>MSWA</strong> for<br />

providing me with all<br />

sorts of services and<br />

physiotherapy. It is so<br />

good to be part of a<br />

community that cares and<br />

understands when you are<br />

living with a disease.<br />


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



MEET THE <strong>MSWA</strong> MEGA HOME<br />


A big thank you to everyone who purchased tickets in the recent <strong>MSWA</strong> Mega Home Lottery!<br />

On Friday, 18 March, <strong>MSWA</strong><br />

announced over 17,300 lucky prize<br />

winners, including three incredible<br />

seaside home winners, making<br />

three instant millionaires! Our<br />

Grand Prize winner, Lauren (ticket<br />

number 27,230) received the lifechanging<br />

call from <strong>MSWA</strong> CEO<br />

Melanie Kiely and <strong>MSWA</strong> General<br />

Manager Supports and Residential<br />

Options Sue Shapland letting<br />

her know that she’d just won the<br />

incredible Grand Prize, a stunning<br />

$3.2M Webb & Brown-Neaves home<br />

in City Beach plus $500,000 in cash!<br />

The lucky Early Bird prize winner,<br />

Matt (ticket number 229,887) has<br />

won our first ever holiday home<br />

in Cable Beach, a $50,000 travel<br />

voucher and a Toyota Rav4.<br />

The Super Early Bird winner, Paul<br />

(ticket number 102,700) has won an<br />

incredible $1.3M North Fremantle<br />

apartment, with spectacular 180<br />

degree ocean views.<br />

Thank you once again to everyone<br />

who purchased a ticket.<br />

The <strong>MSWA</strong> Mega Home Lottery<br />

is <strong>MSWA</strong>’s largest fundraiser. The<br />

support helps us to provide much<br />

needed services, high support<br />

accommodation and respite, as<br />

well as funding for vital research for<br />

a cause and a cure for people living<br />

with neurological conditions.<br />

Join the <strong>MSWA</strong> Platinum Club today<br />

and ensure you never miss out on a<br />

ticket! mswalottery.com.au/mswaplatinum-club<br />

Above: Super Early Bird winner<br />

Paul and <strong>MSWA</strong> CEO Melanie Kiely.<br />

Top: Grand Prize winner Lauren<br />

(centre) pictured with her mum<br />

and sister, and Melanie Kiely (left)<br />

and Sue Shapland (right) from<br />

<strong>MSWA</strong>.<br />



Sunday, 19 June saw the 15th annual Step Up for <strong>MSWA</strong> take place at Central Park Perth.<br />

We were delighted to welcome just over 1,000 participants to climb the stairs. This included<br />

groups taking part in the Mini Climb, One Up, Double Up, Multi Climb, and also the Protective<br />

Services and Front Line Workers Challenge!<br />

It was wonderful to have a large<br />

team from <strong>MSWA</strong> also take to the<br />

stairs this year, with team captain<br />

and <strong>MSWA</strong> Client Tracey Hockey<br />

completing the Double Up! An<br />

amazing achievement!<br />

A huge $232,830 has been raised so<br />

far to support Western Australians<br />

living with neurological conditions.<br />

Our Highest Team Fundraisers, and<br />

loyal <strong>MSWA</strong> supporters, The Ruggiero<br />

Foundation, raised $35,000.<br />

A big thank you to all who climbed<br />

and all of those who came along to<br />

support on the day.<br />

Join us next year at Central Park<br />

and challenge yourself to reach<br />

new heights, whilst making a real<br />

difference for those living with<br />

neurological conditions.<br />

SAVE THE DATE: <strong>2022</strong> <strong>MSWA</strong> OCEAN RIDE<br />

The <strong>2022</strong> <strong>MSWA</strong> Ocean Ride is just around the corner, coming up on Sunday, 20 November. Keep an eye<br />

out on the website, where you can register your interest soon, and be the first to know about this year's<br />

Stationary Cycle Challenge! Visit <strong>MSWA</strong>OceanRide.org.au.<br />





<strong>MSWA</strong> Volunteers play a vital part in supporting our staff and Clients through several different<br />

roles across the organisation, from Activity and Kitchen Assistants to dog walking and social<br />

support. At present, we have more than 30 regular, ongoing Volunteers working across our<br />

Outreach centres and high support accommodation facilities, as well as in Clients’ homes.<br />

These individuals are a valuable resource, providing many of our Clients the opportunities for<br />

one-to-one and group social interaction.<br />

Our Volunteers run art classes,<br />

organise nail spa treatments,<br />

assist with puzzle and board game<br />

challenges and sometimes compete<br />

alongside Clients in indoor bowling<br />

competitions, all in the name of fun<br />

and promoting social connections.<br />

We have eight Peer Support<br />

Volunteers in our Counselling<br />

team, who facilitate peer-run coffee<br />

groups, which provide critical<br />

connections and support for our<br />

Clients. Having gone through a<br />

comprehensive training program,<br />

these Volunteers are equipped with<br />

vital skills and knowledge to provide<br />

a safe space for others.<br />

They are at times, some<br />

of the first people newly<br />

diagnosed Clients reach<br />

out to for support.<br />

In addition, we also have numerous<br />

Volunteers who assist at our<br />

fundraising events, such as Step<br />

Up for <strong>MSWA</strong> and the Ocean Ride,<br />

with registrations, bib collection,<br />

refreshments as well as stair and<br />

road marshal duties.<br />

Our Volunteers work together with<br />

staff to ensure the days’ activities<br />

run smoothly. We therefore make<br />

it a point to tell our Volunteers how<br />

special they are whenever we can.<br />

This year’s National Volunteer<br />

Week (16 – 22 May) focused on<br />

the theme of ‘Better Together’,<br />

which aptly centres on the power<br />

of volunteering to bring people<br />

together, to build communities<br />

and to create a better society for<br />

everyone. We celebrated this year’s<br />

event with intimate celebrations at<br />

the Volunteers’ places of work.<br />

Some were greeted with a special<br />

morning tea, others with gifts and<br />

tokens of appreciation. From all of<br />

us at <strong>MSWA</strong>, thanks for being a part<br />

of our Team!<br />





We currently have a number of opportunities to fill. If you, or someone you know, would like to be<br />

a part of the <strong>MSWA</strong> Volunteer Team, contact Mala Padmanathan, Volunteer and Camp Coordinator<br />

at 6454 3184 or Mala.Padmanathan@mswa.org.au<br />

Admin Assistant (3 positions): Rockingham, Kelmscott, Vasse<br />

Kitchen Assistant (2 positions): Wilson, Beechboro<br />

Activity Assistant (2 positions): City Beach, Albany<br />

Gardener (2 positions): City Beach, Beechboro<br />




As you know, our Camps program has been limited since the easing of COVID-19 restrictions<br />

came into effect.<br />

In the spirit of being flexible and<br />

adaptable, we planned a couple<br />

of Carers Lunches in place of our<br />

usual Carers Camp, which had been<br />

planned for April.<br />

While these outings did not replace<br />

the Camp experience, they did offer<br />

the opportunity for Carers to catch<br />

up, enjoy each other’s company,<br />

make some new connections, and<br />

of course have some respite from<br />

their day-to-day routines.<br />

Carers Lunch: Bentley Pines Training Restaurant.<br />

The first lunch was a Fremantle<br />

Lunch Cruise, which was a unique<br />

experience for many of our Carers.<br />

This cruise from the Barrack Street<br />

Jetty to Fremantle and back, did<br />

not disappoint. The stunning views<br />

from on board the vessel were<br />

made even better with perfect<br />

weather and a delicious hot buffet.<br />

It was nice to see our<br />

Carers catching up and<br />

meeting new people after<br />

such a long break.<br />

Fremantle Lunch Cruise.<br />

The second lunch was a formal sitdown<br />

affair at the Bentley Pines<br />

Hospitality Training Restaurant. This<br />

award-winning restaurant at the<br />

South Metropolitan TAFE is a live,<br />

interactive training environment for<br />

students preparing for work in the<br />

hospitality industry.<br />

To the delight of our Carers, the<br />

four-course menu prepared by<br />

these future chefs was outstanding<br />

and the silver service was excellent.<br />

A definite winner with everyone<br />





We are now accepting expressions of interest for our upcoming camps, however please be<br />

advised that as WA’s COVID numbers continue to fluctuate, there may be changes.<br />

Please email your name, contact details and the camp you would like to attend to:<br />

mala.padmanathan@mswa.org.au<br />

Carers Camps: To be hosted at Kilmolee at Safety Bay (12 – 15 September or 9 – 12 October <strong>2022</strong>).<br />

Family Camp: Woodman Point (3 – 6 October <strong>2022</strong>)<br />

Southwest Clients Camp: The Cove, Denmark (14 – 17 Nov <strong>2022</strong>)<br />





WINTER<br />


<strong>MSWA</strong> DIETICIAN<br />

It’s common to feel hungrier in winter. One study has shown we have lower serotonin (the<br />

hormone that controls appetite) levels during cooler seasons, making us crave carbohydraterich<br />

foods. Other factors – like less fruit and vegetable variations, outdoor activities, and<br />

indulging in more comfort foods like curries, pastries, pasta bakes etc – also make it harder<br />

to maintain a healthy weight. So what can we do to maintain our weight or even reach our<br />

weight goals during winter?<br />

Keep active and healthy<br />

In winter the days are colder, it gets<br />

dark more quickly, and people are<br />

less enthusiastic about outdoor<br />

activities. However, indoor exercises<br />

are just as good. Going to the gym,<br />

doing yoga, or talking to your<br />

physiotherapist for an exercise<br />

program tailored for you, will help<br />

to keep your body moving in the<br />

colder months.<br />

There is a growing amount of<br />

research that points out Non-<br />

Exercise Activity Thermogenesis<br />

(NEAT) plays an important role<br />

in shifting our metabolism. This<br />

includes incidental exercises, such<br />

as parking your car away from the<br />

shops, stepping up stairs, even<br />

folding clothes, putting the washing<br />

on, and helping cook dinner.<br />

Monitor your weight<br />

Whilst dressing like a snowman fits<br />

the bill during wintertime, the extra<br />

clothes mean we might not notice<br />

an increase in body fat. So, it’s a good<br />

idea to hop on a scale to regularly<br />

monitor your weight, or keep a track<br />

of your waist measurement.<br />

Feeding myths<br />

There’s limited strong evidence<br />

that winter directly affects our<br />

body weight. Studies that have<br />

suggested this tend to be from<br />

the US, where wintertime is often<br />

overlapped with holiday seasons,<br />

and is likely a co-factor to this overindulging.<br />

So try not to give yourself<br />

psychological permission in winter<br />

to add additional comfort foods<br />

into your diet on a regular basis.<br />

This doesn’t mean you’re going to<br />

have boring, low-calorie meals and<br />

freeze up.<br />


Here are some practical tips to<br />

help you enjoy your winter meals<br />

and snacks whilst maintaining the<br />

healthiest version of you:<br />

/ Include meat-free dishes and<br />

light soups early in the week, to<br />

make room for heavier meals<br />

later in the week. This is also an<br />

easy way to get in a variety of<br />

vegetables and lentils.<br />

/ Include mostly homemade meals<br />

rather than take-away meals<br />

and desserts. We know they’re<br />

convenient, but people tend to<br />

overeat them, and indulge in<br />

larger portions.<br />

/ Hero your vegetables, eg,<br />

replacing a layer of lasagne<br />

sheets with zucchini slices and<br />

swapping most of the pasta in<br />

pasta bake with vegetables.<br />

/ Use cauliflower rice/risotto in<br />

curries and pastas, or mixing in<br />

50/50 with your rice or pasta.<br />

/ Use low-fat pastries, eg, filo over<br />

puff.<br />

/ Replace a few milky hot drinks<br />

with herbal teas or low-calorie<br />

alternatives (eg, Jarrah hot<br />

chocolate) throughout the day.<br />

Finally, we know it’s more<br />

difficult in winter to get<br />

the required amount of<br />

vitamin D from the sun.<br />

Did you know you can<br />

leave your mushrooms<br />

outdoors in a sunny area<br />

for an hour before eating<br />

them? They’ll absorb<br />

vitamin D for you!<br />


Ingredients<br />

/ 750g zucchini, cut into thin slices<br />

/ 500g butternut pumpkin, peeled<br />

/ 4 x 400g cans chopped tomatoes<br />

/ 8 garlic cloves, chopped<br />

/ ⅓ cup basil, torn<br />

/ 2 bunches English spinach, trimmed and washed<br />

/ 600g fresh lasagne sheets<br />

/ 100g (¾ cup) finely grated parmesan cheese<br />

/ Rocket leaves, to serve<br />

Cheese sauce<br />

/ 40g butter, chopped<br />

/ 90g plain flour<br />

/ 750ml (1.5 cups) milk<br />

/ 375g tub of low-fat ricotta cheese<br />

/ 75g (¾ cup) grated low-fat cheddar cheese<br />

Method<br />

1. To make the white sauce, melt the butter in a medium saucepan, add the flour and stir over low heat<br />

until the mixture is dry and grainy. Gradually whisk in the milk and slowly bring to a simmer. Add the<br />

ricotta, cheese and season to taste.<br />

2. Meanwhile, thinly slice your pumpkin, pop into a microwave-safe container and heat until soft.<br />

3. In a separate bowl, mix the tomatoes and their juice, 2 tablespoons EVOO, garlic, basil, and spinach.<br />

This will form your red-based sauce.<br />

4. Rub butter over the sides and base of a 3-litre heatproof casserole dish (about 19cm x 35cm x 7.5cm)<br />

and place a layer of pasta over the base. Top with zucchini slices, then half the tomato sauce. Top<br />

with one-third of the white sauce, then a layer of pasta, a layer of pumpkin, another third of the white<br />

sauce and another layer of pasta. Top with the remaining tomato sauce and another layer of pasta.<br />

Spread the remaining white sauce over the top and sprinkle with the parmesan cheese.<br />

5. Place the dish on an oven tray and bake for 45 minutes, or until browned and bubbling. Let stand for<br />

10 minutes, then serve with a rocket salad.<br />



Welcome to the final instalment in our series of articles on pain and pain management.<br />

Neurological Liaison Nurse Bronwyn Innes, who has a speciality background in pain<br />

management, explores medications and pain.<br />

If you would like to read the previous articles in our Pain & Pain Management series, all<br />

previous editions of <strong>Bulletin</strong> can be viewed online at publications.mswa.org.au<br />


Pain-relief medications are used as part of a strategy to manage short (acute) or long-term<br />

(chronic) pain. They work by targeting the cause of the pain or by reducing the feeling of<br />

pain. Medicines include prescription medicines, medicines bought over the counter in<br />

pharmacies or supermarkets, and herbal and natural medicines<br />

The role of medicines is not to cure<br />

pain but to lessen it and improve<br />

functionality and quality of life.<br />

Even the strongest medicines for<br />

pain will not always completely<br />

eliminate it, but they can reduce<br />

the severity of pain. In this way it is<br />

important to view medicines as part<br />

of a comprehensive approach to<br />

pain management and functional<br />

improvement. By making you<br />

comfortable, medicines can make<br />

it easier to resume normal activities<br />

or activities you may have been<br />

avoiding, and can help improve<br />

quality of life by minimising<br />

suffering and maximising function.<br />

It is however, important to<br />

understand that while medicines<br />

can help relieve symptoms, they<br />

can sometimes have unpleasant<br />

side effects. Often these side effects<br />

can be avoided or at least managed<br />

with the help of your doctor.<br />

All medicine whether prescription,<br />

over the counter, herbal or vitamins/<br />

supplements should be used<br />

carefully and appropriately because<br />

they can interact with each other<br />

and cause side effects. It is essential<br />

to always tell your doctor about<br />

everything you are taking for pain<br />

and other conditions.<br />

Medicines should always be taken<br />

as prescribed by the doctor and<br />

if you have any concerns discuss<br />

them with your doctor before<br />

changing the medicine or the dose.<br />

The treatment of pain can be broadly<br />

divided into three categories:<br />

/ Physical (eg physiotherapy)<br />

/ Psychological (eg relaxation training)<br />

/ Pharmacological (eg medicines)<br />


Because pain is a subjective<br />

sensation, treatment can be<br />

different from one person to<br />

another, even though the diagnosis<br />

may be the same. It is best to discuss<br />

your treatment with your doctor or<br />

healthcare professional. Your overall<br />

pain management plan will usually<br />

consist of several types of treatment<br />

that will complement each other.<br />

In this article we will focus on the<br />

Pharmacological Interventions.<br />



There are two common types of<br />

OTC medicines:<br />

Paracetamol – often recommended<br />

as the first medicine to try for short<br />

term pain.<br />

Available as tablets, liquid mixtures,<br />

or suppositories. Often is the<br />

sole chemical but is also used in<br />

combination eg cold and flu tablets,<br />

Panadeine, Panadeine Forte.<br />

Regular paracetamol at 4mg /day<br />

can cause liver damage. If it is not<br />

helpful, please stop taking it and<br />

see your doctor.<br />

Nonsteroidal<br />

drugs<br />

Anti-Inflammatory<br />

(NSAIDS) – a group of<br />

medicines that work by reducing<br />

swelling and inflammation and<br />

relieving pain. These include aspirin,<br />

ibuprofen and diclofenac.<br />

Available as tablets, some as<br />

suppositories, and a few as gels or<br />

ointments.<br />

They can cause stomach ulcers<br />

if taken regularly and need to be<br />

taken with food.<br />

NB: Please ensure to discuss all<br />

medication options with your GP<br />

before purchasing any.<br />


Prescription pain medications<br />

provide stronger relief than OTC<br />

drugs. Types of prescription pain<br />

relievers include:<br />

1. Anti-neuropathic medications:<br />

These medications are known as coanalgesics<br />

and can be prescribed for<br />

nerve-related pain. They are often<br />

prescribed if you have shooting<br />

or burning pain (nerve injury or<br />

neuropathic pain).<br />

Anti-neuropathic medicines can help<br />

reduce or ‘calm down’ nerve activity<br />

and reduce pain hypersensitivity<br />

associated with conditions like<br />

shingles, diabetic pain, sciatica,<br />

fibromyalgia, and headaches.<br />

2. Anti-epilepsy drugs:<br />

Medications such as Gabapentin or<br />

Pregabalin for epilepsy, interrupt<br />

pain messages to the brain. These<br />

medicines can ease nerve pain and<br />

fibromyalgia.<br />

Carbamazepine (Tegretol) is the first<br />

treatment usually recommended<br />

to treat Trigeminal Neuralgia.<br />

Treatment with Carbamazepine<br />

requires regular blood tests to<br />

monitor blood count and liver<br />

function, to make sure you are not<br />

developing uncommon side effects.<br />

3. Antidepressants:<br />

These medications work on<br />

chemicals called neurotransmitters<br />

in the brain. They work best for<br />

chronic pain, including migraines.<br />

Serotonin Noradrenaline Reuptake<br />

Inhibitors (SNRIs) such as Duloxetine<br />

(Cymbalta) and Venlafaxine (Effexor)<br />

may be useful for pain, mood, and<br />

sleep.<br />

Tricyclic Antidepressants (TCAs)<br />

such as Amitriptyline and<br />

Nortriptyline may be useful for pain<br />

and sleep.<br />

Some people find that mild side<br />

effects (such as dry mouth, blurred<br />

vision, or drowsiness) improve the<br />

longer they take the medicine.<br />

4. Opioid Pain Medications:<br />

Opioids are laboratory made<br />

narcotic pain medicines. They<br />

change how your brain perceives<br />

pain messages. Because they can be<br />

addictive, doctors rarely prescribe<br />

opioids for chronic pain. Opioids are<br />

usually taken for a short time after<br />

surgery or traumatic injury.<br />

Types of opioids include<br />

Buprenorphine patches, Oxycontin,<br />

Fentanyl, Methadone, Tapentadol,<br />

Codeine, Morphine.<br />

5. Muscle Relaxants:<br />

Medications such as<br />

Benzodiazepines and Orphenadrine<br />

reduce pain by relaxing tight<br />

muscles.<br />

Baclofen belongs to this group<br />

of medicines. It is used to reduce<br />

excess tension in muscles which<br />

cause spasms.<br />


Intrathecal pumps offer much<br />

lower doses of baclofen because<br />

they are designed to deliver the<br />

medication directly to the spinal<br />

fluid rather than going through the<br />

digestive and blood system first.<br />

They are often preferred in patients<br />

with spasticity, as very little of the<br />

oral dose actually reaches the spinal<br />

fluid. Besides those with spasticity,<br />

intrathecal administration is also<br />

used in patients with multiple<br />

sclerosis who have severe painful<br />

spasms which are not controllable<br />

by oral baclofen.<br />



With pump administration, a test<br />

dose is first injected into the spinal<br />

fluid to assess the effect, and if<br />

successful in relieving spasticity, a<br />

long-term intrathecal catheter is<br />

inserted from the spine through<br />

the abdomen and attached to the<br />

pump which is implanted under<br />

the abdomen's skin, usually by the<br />

ribcage. The pump is computercontrolled<br />

for automatic dosage<br />

and its reservoir can be replenished<br />

by percutaneous injection. This is<br />

done on a regular basis. Usually,<br />

every 12 weeks the pump is emptied<br />

and refilled as the efficacy of the<br />

drug is reduced over time. The<br />

pump also must be replaced every<br />

five years or so when the battery is<br />

changed.<br />

Consideration of intrathecal pump<br />

placement depends on severity of<br />

spasticity, suitability of patient, and<br />

is determined by a pain specialist.<br />


Some people find that taking<br />

supplements can help manage<br />

chronic pain, although there is<br />

limited evidence to support this for<br />

some specific conditions.<br />

For chronic pain caused by<br />

osteoarthritis, some people find that<br />

taking glucosamine or chondroitin<br />

can help them.<br />

There is also some evidence<br />

to suggest that supplemental<br />

omega-3 fatty acids can help chronic<br />

pain that affects large areas of your<br />

body, as well as neck and shoulder<br />

pain and period (menstrual) pain.<br />


Medicinal cannabis may be effective<br />

for neuropathic pain if other<br />

medicines have not been helpful.<br />

This must be prescribed by a doctor<br />

with specific experience with its use<br />

in pain management.<br />



If various non-surgical measures<br />

have proved ineffective in providing<br />

adequate relief or are poorly<br />

tolerated, injection options can be<br />

considered.<br />

/ Pain management procedures<br />

(PMPs) are usually not a cure<br />

for chronic pain, however, they<br />

can provide an effective way<br />

to improve your overall pain<br />

management.<br />

/ PMPs provide pain relief so other<br />

long-term pain treatments have a<br />

better chance of working.<br />

/ PMPs allow you to reduce pain<br />

medications and engage more<br />

effectively in physiotherapy and<br />

behavioural therapies.<br />

Sometimes pain procedures can<br />

actually ‘switch off’ sensitive nerves<br />

and produce long-term pain relief.<br />

An example of a pain procedure is<br />

an epidural injection:<br />

/ If a protruding spinal disc is<br />

irritating a nearby nerve causing<br />

leg pain (sciatica).<br />

/ Using an x-ray machine, a fine<br />

needle is placed into the epidural<br />

space next to the irritated nerve.<br />

/ A small amount of local<br />

anaesthetic and steroid<br />

(cortisone) is injected around the<br />

nerve, via the needle.<br />

/ Epidural steroid injections<br />

may reduce leg pain (sciatica)<br />

for weeks-to-months in 1-in-4<br />

patients.<br />

/ Epidural steroid injections DON’T<br />

treat low back pain, only leg pain.<br />

There are many other procedural<br />

options which target headaches<br />

down to ankle pain. These options<br />

are best discussed with a Pain<br />

Specialist.<br />


Q: How can you release your<br />

body’s own medicine chest to<br />

relieve pain?<br />

A: SMILE.<br />

Smiling releases many of our ‘up’<br />

chemicals including serotonin.<br />

We are wired from childhood that<br />

smiling means happiness, so that if<br />

you smile (even if you are unhappy)<br />

the body releases our ‘happy’<br />

chemicals.<br />

Serotonin is the chemical<br />

released from chocolate<br />

and milk drinks –<br />

smiling does it without<br />

the calories.<br />

Walking at our own pace<br />

also increases serotonin and<br />

noradrenaline.<br />

Noradrenaline<br />

makes you feel more robust and<br />

able to cope with stressors or issues.<br />

This is what antidepressants can<br />

also do – but you can help by doing<br />

it naturally.<br />

Reminder: discuss with your GP<br />

or neurologist the best and safest<br />

options for you. We hope that this<br />

information has been informative.<br />


<strong>MSWA</strong> NEUROLOGICAL<br />



/ painhealth.csse.uwa.edu.au<br />

/ healthdirect.gov.au<br />

/ painaustralia.org.au<br />

/ nps.org.au<br />

/ mayoclinic.org<br />

/ wpain.com.au<br />

/ Coping with Persistent<br />

Pain: A guide for patients,<br />

partners, family and carers;<br />

(booklet) produced and<br />

published by Janssen-Cilag<br />



If you would like to opt-out of receiving a paper copy of this publication,<br />

please contact communications@mswa.org.au to sign up to the e-magazine.<br />




ALBANY<br />

We love our new facility and have had an interesting time so far at Albany Outreach.<br />

We had a plant-potting session to<br />

add colour to our new areas, and<br />

crafty Clients have been bringing<br />

their own craft in to show us their<br />

ideas. We’ve learnt how to recycle<br />

bread bags and old shirts into floor<br />

mats.<br />

A guest came and spoke to us about<br />

his fantastic soap business and how<br />

he sources the local ingredients.<br />

Thanks to Jasper from Fifo Soap.<br />

We have also been enjoying games<br />

days. Bingo was a hit and we have a<br />

few new ones to try out in the next<br />

few weeks.<br />

At the time of writing this, Christmas<br />

in July is coming up – we know<br />

there’ll be a good turnout for that –<br />

as well as Albany Mobility Solutions<br />

in August.<br />



ALBANY<br />




In 2021, Treendale Gardens was selected to receive a generous grant from the ALP via MLA<br />

for Collie-Preston, Jodie Hanns. Jodie had been to visit us at Treendale and was impressed by<br />

what she saw. The grant was to be specifically spent on our outdoor area which was in need<br />

of an upgrade to make it a more welcoming area for Clients and their family and friends to<br />

gather in all seasons.<br />

I think everyone will agree that the<br />

area now looks fantastic with new<br />

furniture, fans, blinds, artwork, and<br />

an array of plants.<br />

Linda Kidd, Nat Hue’ge de Serville<br />

and I started the process of planning<br />

and ideas, however, this vision<br />

would not have come to fruition<br />

without the help of Sue Shapland<br />

and Sandra Wallace.<br />









Margaret Doody House is a purpose-built respite house nestled in the beautiful coastal suburb<br />

of City Beach, just a five minute drive to the beach where you can meander along the boardwalk<br />

and visit waterfront eateries.<br />

There is also the well-loved local<br />

Empire Village – a small shopping<br />

centre, and a large park just a short<br />

two minute walk from the house.<br />

Margaret Doody House provides<br />

24/7 short-term residential respite<br />

for Clients living with a neurological<br />

condition. Respite care provides<br />

a temporary break from your<br />

everyday routine, and offers your<br />

carer a well-earned break at home.<br />

It is fully equipped and wheelchair<br />

accessible, offering a warm, friendly<br />

environment to relax and enjoy the<br />

quiet surrounds or interact with new<br />

and/or familiar people. Personal<br />

care and support is provided by our<br />

experienced staff, 24 hours a day.<br />

There is also a nurse available during<br />

the week. Massage can be booked<br />

with Physiotherapist (Yasuko) for a<br />

fee, and you can continue to access<br />

your regular therapy sessions and<br />

community supports from here<br />

when pre-organised with your<br />

current provider.<br />

Margaret Doody House has enjoyed<br />

a bit of a facelift to start <strong>2022</strong> – a<br />

fresh coat of paint, new flooring,<br />

new furniture, and a spruce up<br />

of the courtyard. Kind donations<br />

and work provided by a few local<br />

Bunnings stores has resulted in a<br />

beautiful bright new outdoor space<br />

to relax in and enjoy.<br />

A huge thank you to Lauren at<br />

Bunnings Innaloo for coordinating<br />

the other stores in helping create<br />

a welcoming courtyard for Clients<br />

and staff to enjoy.<br />

Our amazing volunteer gardener,<br />

Colin, has begun refreshing and<br />

maintaining our gardens which<br />

should have us looking fabulous in<br />

no time.<br />

With all the new changes,<br />

one thing remains the same,<br />

and that is our continued<br />

provision of genuine warmth<br />

and a high level of customised<br />

care and support to meet<br />

individual needs.<br />

Each bedroom is equipped with a<br />

modern king, single electric bed<br />

with air mattress, electric ceiling<br />

hoists, wall mounted smart TV,<br />

reverse cycle air conditioning and<br />

semi-ensuite.<br />

In our current COVID-19 climate,<br />

<strong>MSWA</strong> has been constantly<br />

updating and implementing our<br />

prevention procedures to keep our<br />

staff and Clients as safe as we can.<br />

We look forward to welcoming new<br />

and familiar clients to Margaret<br />

Doody House.<br />

Call us on 9385 9574 for more<br />

information, to arrange a pre-stay<br />

visit, or to book in for your respite stay.<br />









TO US<br />

Do you have a story about living with a neurological condition in WA that other <strong>MSWA</strong> Clients<br />

might like to read? We invite you to share your experiences with our many <strong>Bulletin</strong> readers.<br />

Email your submission to bulletin@mswa.org.au for consideration by the Editorial<br />

Working Group.<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, Davina Sawyer,<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 />





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