MSWA Bulletin Magazine Winter 2023

Unravelling the mysteries of multiple sclerosis | Ambilympics champion Chris McEncroe takes home silver for Australia | John Robertson: Nurturing a decades-long vocation | Don't think of the pink elephants!

Unravelling the mysteries of multiple sclerosis | Ambilympics champion Chris McEncroe takes home silver for Australia | John Robertson: Nurturing a decades-long vocation | Don't think of the pink elephants!


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

<strong>Winter</strong> <strong>2023</strong><br />

mswa.org.au<br />

INSIDE<br />

Creating connections: <strong>MSWA</strong> Clients, staff and<br />

carers came together in a flurry of creativity<br />

to celebrate World MS Day on 30 May.<br />

See inside for more photos at our Butler,<br />

Bunbury, Rockingham and Wilson events.


29 Parkhill Way 9365 4888<br />

Fax 9451 4453<br />


If you would like to comment<br />

on anything you read in this<br />

<strong>Bulletin</strong> please email<br />

bulletin@mswa.org.au<br />

or write to <strong>MSWA</strong>, Locked Bag 2,<br />

Bentley DC WA 6983<br />

For general feedback or complaints<br />

please contact<br />

Davina Sawyer 6454 3173 or<br />

feedback@mswa.org.au<br />


Nicola Washington, Tony Millar,<br />

Emily Ace and 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<br />

welcomes unsolicited submissions.<br />

All articles are subject to a<br />

reviewing process. The views<br />

expressed are those of the authors<br />

and do not necessarily reflect the<br />

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

directors or officers.<br />


Our Neurological Liaison Nurses are usually the first point of<br />

contact after the neurologist’s diagnosis.<br />

COMMUNITY NURSE: 9365 4888<br />

MONDAY TO FRIDAY (8.00AM - 4.00PM)<br />


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

throughout your service journey with <strong>MSWA</strong>. From helping you to<br />

access funding, to working with you to get the most from your<br />

selected services, our trained staff are here to help.<br />












OUTREACH AT <strong>MSWA</strong><br />

If you live in Perth, Rockingham, Bunbury or Albany and are interested<br />

in a trial to experience the Outreach community, get in touch with<br />


VIA OUTREACH@<strong>MSWA</strong>.ORG.AU<br />


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

service for people living with multiple sclerosis and other neurological<br />

conditions in Western Australia. Our team can help you to stay in your<br />

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


MANAGER: 1300 865 209<br />


PLEASE VISIT <strong>MSWA</strong>.ORG.AU<br />


Welcome to the <strong>Winter</strong> <strong>2023</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 />



Help us to reduce our environmental impact by going digital!<br />

Not only does this save trees and minimise our contribution to landfill, but it also allows<br />

you to better engage with our <strong>Bulletin</strong> content. Get in touch via communications@mswa.org.au<br />

to sign up to our e-magazine. You can also find us online at publications.mswa.org.au.<br />

2<br />



It’s hard to believe we are over<br />

One of the new ‘seeds’ is our<br />

In the theme of celebration, it<br />

halfway through <strong>2023</strong>, but<br />

Client Advisory and Co-Design<br />

was fantastic to see so many<br />

when I reflect on the positive<br />

Committee, which is now well<br />

of you participating in our<br />

progress we have made on so<br />

underway and providing<br />

World MS Day ‘paint and sip’<br />

many fronts – it’s no wonder the<br />

valuable insights.<br />

workshops on 30 May. It was<br />

time is flying by.<br />

There are so many initiatives<br />

now underway to improve the<br />

way we do things at <strong>MSWA</strong>,<br />

to better support and engage<br />

our Clients, and also to create a<br />

great workplace for our staff and<br />

volunteer teams. Whilst we still<br />

have so much we want to do, it is<br />

very encouraging to see the ‘seeds’<br />

planted for the future.<br />

This is underpinned by the<br />

feedback you have shared with us.<br />

Thank you to all our Clients and<br />

carers who took the time to<br />

complete our <strong>2023</strong> Client Survey.<br />

The insight you provide is key to<br />

shaping our future direction and<br />

where to prioritise our focus.<br />

We also hosted our <strong>2023</strong> Client<br />

forum in July, which provided the<br />

opportunity to hear first-hand from<br />

researchers on the important work<br />

being undertaken at Edith Cowan<br />

University and Perron Institute,<br />

including information on the<br />

various trials in progress.<br />

This event was particularly welltimed,<br />

with the Perron Institute<br />

contributing to a groundbreaking<br />

international study identifying<br />

the first genetic marker for MS<br />

severity, with these findings<br />

published in the scientific journal<br />

Nature in late June.<br />

We congratulate Perron Institute<br />

for its significant role in this<br />

discovery, which not only furthers<br />

our understanding of MS, but<br />

holds the potential to revolutionise<br />

the development of effective<br />

treatments for long-term disability.<br />

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

longstanding supporter of the<br />

Perron Demyelinating Diseases<br />

Group and we commend Professor<br />

Allan Kermode and Dr Marzena<br />

Fabis-Pedrini – both of whom<br />

receive funding from <strong>MSWA</strong> –<br />

for the significant progress their<br />

work has yielded.<br />

uplifting to watch Clients<br />

and staff from across the<br />

organisation come together to<br />

make new connections over<br />

coffee, cake and creativity.<br />

We are also thankful to Main<br />

Roads Western Australia for<br />

supporting us to light up<br />

the night and many of<br />

Perth’s bridges red to mark<br />

the occasion.<br />

The overwhelming feeling of<br />

support and connection was also<br />

felt at our Step Up for <strong>MSWA</strong><br />

event on 25 June, raising more<br />

than $163,000. We now gear up<br />

for our biggest event of the year,<br />

the <strong>2023</strong> Ocean Ride (powered by<br />

Retravision) that will take place<br />

on Sunday, 12 November, as well<br />

as the Stationary Cycle Challenge<br />

between October and November.<br />

So don’t wait, get on your bike –<br />

stationary or otherwise – and start<br />

preparing! We are eager to see if<br />

<strong>MSWA</strong> Rockingham can defend<br />

their 2022 title!<br />

On a different but equally positive<br />

topic, our national body Multiple<br />

Sclerosis Australia (MSA) is set<br />

to host the <strong>2023</strong> Progress in MS<br />

Research Conference in Perth for<br />

the first time ever, between 29<br />

November and 1 December.<br />

The three-day event is designed to<br />

promote the exchange of scientific<br />

thought, break down barriers to<br />

neurological research in Australia,<br />

and to provide research updates to<br />

the community.<br />

We are proud to partner with<br />

MSA in delivering this conference,<br />

which for the first time will feature<br />

community sessions designed<br />

for people with lived experience.<br />

We will provide you with further<br />

information around the conference<br />

and how you can get involved in<br />

the coming months.<br />

Lastly, in the Autumn <strong>Bulletin</strong><br />

I wrote about an important<br />

piece of work undertaken by the<br />

Board to change our company<br />

legal structure and update our<br />

Constitution to better reflect the<br />

complex organisation <strong>MSWA</strong> is<br />

today, and as we look to the future.<br />

I am proud to inform you that<br />

our Financial Members voted<br />

to approve the conversion<br />

from an incorporated<br />

association into a company<br />

limited by guarantee and<br />

adopt a new Constitution at<br />

a Special General Meeting<br />

on 29 June.<br />

These changes are solely to<br />

strengthen the governance of our<br />

organisation and have no impact<br />

on the services Clients receive from<br />

<strong>MSWA</strong>, which remains a not-forprofit<br />

charitable organisation.<br />

This is an important milestone<br />

in <strong>MSWA</strong>’s history, laying a<br />

foundational piece from which<br />

we can continue to focus on our<br />

Purpose; ‘to provide benevolent<br />

relief to people living and affected<br />

by multiple sclerosis and other<br />

neurological conditions, to<br />

empower them to live their best<br />

lives’. We would like to thank<br />

all Financial Members who<br />

engaged with us around these<br />

important decisions.<br />

In closing, I would like to thank you<br />

all for your ongoing input, feedback<br />

and support, whether that is as<br />

a Client, carer, family member or<br />

supporter. We wouldn’t be making<br />

the inroads we are without it.<br />

We can always do better, but<br />

not without your input as to<br />

how and where.<br />



4<br />



Welcome to the <strong>Winter</strong> Edition<br />

of our Member & Client Services<br />

<strong>Bulletin</strong>. The cold weather is<br />

definitely here but spring is on<br />

its way.<br />

“The colour of springtime is in<br />

the flowers; the colour of winter<br />

is in the imagination.”<br />

– Terri Guillemet<br />

On Thursday, 6 July we held<br />

our <strong>2023</strong> Client Forum at the<br />

Telethon Speech and Hearing<br />

Centre in Wembley. We had a<br />

great turnout for this event, where<br />

Clients were provided updates<br />

on the latest research and trials<br />

underway from our research<br />

partners at Perron Institute and<br />

Edith Cowan University. We also<br />





As featured on our front page,<br />

heard from our own clinicians<br />

World MS Day took place on 30 May<br />

and we held a ‘paint and sip’ event<br />

at our Butler, Bunbury, Rockingham<br />

and Wilson sites. It was a fantastic<br />

day where our Clients, carers<br />

and staff came together to raise<br />

awareness for MS and to show off<br />

their painting talents.<br />

While there were quite a few<br />

talented artists, I was not one of<br />

them! However, it was a great day<br />

with lots of fun and great time<br />

spent sharing stories and making<br />

connections. The artwork will be<br />

put together and displayed at our<br />

centres and we are looking forward<br />

to seeing it all pulled together.<br />

Thank you to all involved in our<br />

World MS Day working group<br />

and to our wonderful Events and<br />

Outreach team who did such a<br />

good job organising this activity.<br />

who provided information on new<br />

services available through our<br />

Physiotherapy and Occupational<br />

Therapy teams. This annual forum<br />

provides our Clients with the<br />

opportunity to interact and ask<br />

questions for more insight across<br />

research and our services.<br />

If you were not able to make it<br />

to the forum, you can review<br />

the presentations on our<br />

<strong>MSWA</strong> YouTube Channel.<br />

Scan the QR code to view.<br />

As we close out on another<br />

financial year, the NDIS has now set<br />

the budgets for the year ahead. We<br />

will be watching closely on what<br />

changes will be implemented by<br />

Minister Bill Shorten following the<br />

NDIS review. We are hopeful that<br />

we will see some positive action.<br />

On page 8, <strong>MSWA</strong> Manager Client<br />

Engagement Geoff Hutchinson<br />

breaks down the ‘What we have<br />

heard’ report released by the NDIS<br />

in June, following the review’s<br />

consultation period.<br />

A key issue which remains a<br />

challenge across the disability<br />

sector – and indeed many other<br />

sectors across Australia – is<br />

workforce staffing shortages. The<br />

challenges are not going away any<br />

time soon, and the focus for <strong>MSWA</strong><br />

and our peers is to attract and<br />

retain good people in the disability<br />

sector. Despite these challenges,<br />

<strong>MSWA</strong> has achieved some great<br />

outcomes, including redefining<br />

our Purpose, strategy and values,<br />

and the implementation of new<br />

systems, processes and services to<br />

better support our Clients.<br />

I would like to thank our dedicated<br />

staff for their hard work and<br />

commitment over the past year,<br />

and our Clients for your patience<br />

and understanding as we<br />

navigated these challenges.<br />

As always, your feedback is<br />

important to us. If you have<br />

anything you would like to<br />

share, please reach out to us<br />

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

call 6454 3173.<br />




Multiple sclerosis (MS), a complex<br />

neurological condition affecting<br />

millions worldwide, has long<br />

perplexed medical researchers<br />

seeking effective treatments.<br />

However, there may be hope on the<br />

horizon as the Perron Institute, in<br />

collaboration with an international<br />

study, achieved a major<br />

breakthrough in MS research: the<br />

identification of the first genetic<br />

marker associated with MS severity.<br />

This remarkable discovery not only<br />

advances our understanding of the<br />

disease, but also has the potential<br />

to revolutionise long-term disability<br />

treatments for those living with MS.<br />

Published in prestigious journal<br />

Nature, the groundbreaking<br />

study involved an impressive<br />

collaboration of over 22,000<br />

individuals with MS from across<br />

the globe. Under the leadership of<br />

Professor Kermode, spearheading<br />

this activity Demyelinating<br />

Diseases Research at Perron<br />

Institute and the Centre for<br />

Molecular Medicine and Innovative<br />

Therapeutics at Murdoch<br />

University, the research team also<br />

included Dr. Fabis-Pedrini, a Senior<br />

Research Fellow funded by <strong>MSWA</strong>.<br />

Both distinguished researchers<br />

have been acknowledged as coauthors<br />

from Western Australia for<br />

their remarkable contributions to<br />

this international study.<br />

Excitement abounds in the<br />

scientific community as Professor<br />

Kermode shares his enthusiasm<br />

for the results, stating that the<br />

genetic marker discovery has<br />

flung wide open the door to<br />

understanding the intricate<br />

mechanisms underlying MS. This<br />

unprecedented insight paves the<br />

way for developing treatments that<br />

can significantly enhance recovery<br />

and halt disease progression,<br />

ushering in a new era of hope for<br />

MS patients.<br />

Dr. Fabis-Pedrini echoes the<br />

sentiment, emphasising the<br />

significance of identifying the<br />

genetic variant linked to MS<br />

severity. This crucial advance<br />

not only holds potential for<br />

new drug discovery, but also<br />

aims to preserve the wellbeing<br />

of people living with MS,<br />

marking a major stride towards<br />

improving the lives of those<br />

affected by the disease.<br />

The latest data underscores the<br />

far-reaching effects of neurological<br />

conditions on people's lives and<br />

serves as a poignant reminder of<br />

the need for continued dedication<br />

to research and fundraising efforts.<br />

The commissioned report by<br />

MS Australia reveals that 33,335<br />

Australians were living with MS in<br />

2021, with 3,040 individuals based<br />

in Western Australia, indicating<br />

an increase from 2017 figures.<br />

This growing prevalence<br />

highlights the urgency of MS<br />

research and support.<br />

<strong>MSWA</strong> remains resolute in its<br />

commitment to empowering<br />

people to live their best lives<br />

and providing the best possible<br />

support. Over the past decade,<br />

<strong>MSWA</strong> has contributed an<br />

astounding $34 million to research,<br />

bolstering hope for advancements<br />

in MS treatments.<br />


<strong>MSWA</strong> SENIOR MARCOMMS<br />


6<br />





As discussed previously in this<br />

publication, the Government<br />

announced a review into the<br />

National Disability Insurance<br />

Scheme (NDIS)… again.<br />

1<br />

Why is the National Disability Insurance Agency<br />

(NDIA) an oasis in a desert?<br />

This is a big one and something I am very happy<br />

the report is highlighting. In short, this means that<br />

the NDIA was never designed to support all people with all<br />

4<br />

Why aren’t NDIS markets working?<br />

The early vision of the NDIA was to establish a competitive and free market where<br />

providers competed for clients and produced improved quality, innovation,<br />

or diversity of services for all participants in all locations. However, due to a<br />

variety of reasons, this utopia hasn’t occurred yet.<br />

Just two years after the completion<br />

of the 2019 Functional and<br />

Efficiency Review of the NDIA Act<br />

– otherwise known as the ‘Tune<br />

Review’ – the Hon Bill Shorten MP,<br />

announced in October 2022 that<br />

the Government would complete<br />

yet another review of the Scheme.<br />

The goal of the current review is to<br />

look at the design, operations and<br />

aspects of their disability, and not enough support remains<br />

available for those who don’t fit into the NDIA structure. For<br />

example, of the $31.3 billion the Government contributed to<br />

disability services in 2021-2022, 93 per cent of it went to the<br />

NDIS. This means that if you are not on the NDIS, such as<br />

people over 65 with a disability who missed out on entering<br />

the Scheme, your service options and available funding are<br />

limited. <strong>MSWA</strong> has been working to highlight this issue to the<br />

Government, so it's pleasing to see that it has been listed as<br />

challenge #1 in this report.<br />

One reason may just be time, as it will take time for the market to understand the gaps in the sector<br />

and drive change. However, another may be that it isn’t a ‘free market’. As Economic Studies 101 tells<br />

us, a market where the price is regulated by the Government isn’t ‘free’. As the report highlights, the<br />

way price caps are set does not help providers respond to the needs of participants and encourage<br />

innovation or competition in service delivery. It also makes it hard to invest in the capability of<br />

workers which in turn limits providers' ability to bridge the worker gap currently engulfing the sector.<br />

The shortage of skilled workers and the impact this has on service delivery has been well<br />

documented here and in other Government reports. However, until we do something to address this<br />

issue, the ability for a truly free market experience for participants will remain limited.<br />

sustainability of the NDIS.<br />

It will also look at ways to make<br />

the market and workforce more<br />

responsive, supportive and<br />

sustainable. The review isn’t due<br />

to be finalised until October <strong>2023</strong>;<br />

however, much like any great<br />

summer blockbuster, they have<br />

released a few snippets early to<br />

allow us to catch a glimpse of<br />

where things are heading.<br />

Report Part A, or the ‘What we<br />

have heard’ report as they call it,<br />

highlights five issues co-chairs<br />

Lisa Paul AO PSM and Professor<br />

Bruce Bonyhady AM feel are the<br />

most challenging, from feedback<br />

provided from participants like<br />

you. Report Part B or ‘What we<br />

are going to do about it’, as I am<br />

hoping they call it, will be<br />

released later in the year. The full<br />

report is available online at<br />

www.ndisreview.gov.au or you can<br />

keep reading to get the gist.<br />

2<br />

3<br />

What does reasonable and necessary mean?<br />

The bedrock of the NDIA was that individuals<br />

would receive ‘reasonable and necessary’ support<br />

based on their individual needs. However, there is no set<br />

definition of what is ‘reasonable’ or what is ‘necessary’,<br />

and critically how we keep that consistent while also<br />

understanding everyone's individual needs are different.<br />

Having lived in the NDIS world now for five years, this confusion<br />

leads to some remarkably inconsistent and inequitable<br />

decisions that impact participants' plans and service<br />

opportunities. While I applaud any attempt at reframing this<br />

often-used phrase, I am also concerned getting this wrong<br />

could lead to an even less personalised approach. This is a<br />

tough needle to thread for the NDIA, but one that could really<br />

improve the outcomes for participants if they get it right.<br />

Why are there many more children in the<br />

NDIS than expected?<br />

Not much to add to this takeaway other than to<br />

highlight that 50 per cent of the 592,059 active<br />

NDIS participants nationally are aged between<br />

0 – 18 years of age.<br />

5<br />

How do we ensure that the NDIS is sustainable?<br />

Or as I like to call it, ‘all of the above’. A sustainable NDIS (to me) would be one that<br />

supports the needs of all participants, with prompt and necessary funding that<br />

understands individual service requirements, is delivered by a skilled and motivated<br />

workforce and supported by alternate funding options for requirements that fall<br />

outside the scope of the Scheme. Once we get all that right, the NDIS can continue<br />

to grow and assist without annual reviews being needed.<br />

At 10 years in, I still maintain that the NDIS is a remarkable idea that will one day help all those living<br />

with disability to access the type of services they deserve. However, it's also worth noting that at 10<br />

years in, we’re not there yet.<br />

The latest NDIA review seems to have identified challenges where a different answer will make a<br />

difference to those on the Scheme. They also seem to be going about it the right way in seeking<br />

feedback from participants and providers on how to fix these issues. On each page, they pose further<br />

questions on how we can improve the Scheme.<br />

I encourage you all to read the report and respond to the questions with your feedback on<br />

how we can make the NDIS into the scheme we all want it to be at www.ndisreview.gov.au.<br />



What is the National Disability Insurance Scheme (NDIS)?<br />

The NDIS is a scheme of the Australian Government which<br />

provides funding to eligible people living with disability.<br />

The NDIS now supports over 500,000 Australians with<br />

disability to access the services and supports they need.<br />

The National Disability Insurance Agency (NDIA) delivers the NDIS.<br />

8<br />




As a father of three young girls,<br />

Chris had spent the final weeks of<br />

December 2016 working long days<br />

at his fledgling electrical business<br />

before enjoying a well-earned<br />

break with his family.<br />

But what he imagined to be a<br />

time for spoiling his girls with<br />

presents, long lunches and relaxing<br />

in the summer sun turned into<br />

the unimaginable overnight; a<br />




Years of steadfast dedication, selfbelief<br />

and hard work has paid off<br />

in spades for <strong>MSWA</strong> Client Chris<br />

McEncroe, who over a sevenyear<br />

journey went from lying in<br />

a hospital bed on a ventilator to<br />

bringing home not one, but two<br />

medals for Australia at the <strong>2023</strong><br />

Ambilympics held in Metz, France.<br />

The competition attracted 400<br />

competitors from 24 different<br />

countries, with Chris the only<br />

Australian representative<br />

competing in a skilled trade<br />

category: electrical engineering.<br />

Chris, alongside his partner – and<br />

recently qualified apprentice –<br />

Poss, had two days to complete the<br />

wiring for a mock house, complete<br />

with an electrical switchboard,<br />

to be judged on the accuracy of<br />

delivering a set of plans. While Poss<br />

hadn’t initially planned to compete,<br />

her help was required to reach<br />

some of the work which had been<br />

set out at two metres high.<br />

“I found it quite odd they didn’t<br />

expect someone in a wheelchair,<br />

and out of the eight competitors,<br />

I was the only one,” Chris said. “I<br />

asked how I could do the parts that<br />

I couldn’t reach, so they let Poss<br />

help me, which was pretty cool<br />

because we go to do part<br />

of it together.”<br />

By the time the last second of<br />

the clock ticked down on the<br />

competition, Chris had a good<br />

feeling his work had earned him a<br />

place on the podium.<br />

“I was pretty chuffed, because I<br />

felt I was the most disabled out<br />

of everyone, and yet it was only<br />

me and another guy that actually<br />

finished the task,” he said.<br />

“The moment of getting the medal<br />

was awesome, getting to go up<br />

on stage and first to get the silver<br />

medal, I thought alright that’s all<br />

done and dusted.”<br />

But little did Chris know,<br />

each country is presented an<br />

Outstanding Achievement<br />

medal to award their strongest<br />

competitor.<br />

With Chris the only Australian<br />

representative to medal at<br />

the Abilympics, he was the<br />

natural choice.<br />

“My partner was waving the<br />

Australian flag and helped push<br />

me up on stage.”<br />

“I would never have thought that I<br />

would end up with a silver medal<br />

for Australia a couple of years ago,<br />

so I think it’s a real ‘feel-good’ kind<br />

of thing.”<br />

Chris highly recommended<br />

anyone interested to showcase<br />

their skills to get in touch with<br />

contact@abilympics.org.au.<br />

“It’s so positive for everyone,<br />

particularly those in the disabled<br />

community. It gives everyone<br />

that ability to do something<br />

they wouldn’t normally have the<br />

opportunity to achieve.”<br />

life-changing diagnosis and a sixmonth<br />

stint in intensive care.<br />

“I went to work on December 23,<br />

totally normal and healthy,” Chris<br />

remembers. “It hit me nearly two<br />

hours into that day, I just started<br />

getting weakness in my legs.”<br />

“By lunchtime it had spread to my<br />

arms, but weirdly I didn’t think<br />

much of it. I didn’t expect anything<br />

because I was a healthy guy.”<br />

Having managed to finish the job<br />

that day, Chris made his way home<br />

and went to bed, not raising the<br />

alarm with his family.<br />

“I went to bed that night<br />

and never walked again,”<br />

Chris said.<br />

“The next morning, I told my ex-wife<br />

that I couldn’t get out of bed. I literally<br />

could not move. The paramedics had<br />

to drag me out of bed and took me<br />

to Busselton Hospital.”<br />

Due to the severity of Chris’<br />

condition, he was quickly diagnosed<br />

with Guillain-Barré Syndrome.<br />

“I explain it as MS in reverse. It is the<br />

same demyelination of the nerve<br />

sheath, but in my case, I lost all my<br />

nerve sheath overnight,”<br />

Chris explains.<br />

Unlike MS, Guillain-Barré affects<br />

the peripheral nervous system – the<br />

network of nerves located outside<br />

of the brain and spinal cord.<br />

“They flew me out to Perth straight<br />

away, because when it’s that<br />

severe, there is a real risk of going<br />

into full cardiac arrest,” he said.<br />

“I knew nothing about it at that<br />

stage. I got to ICU, I remember<br />

blacking out and then I was<br />

basically in a coma for two weeks.”<br />

What followed was six months in<br />

Fiona Stanley’s intensive care unit<br />

on a ventilator.<br />

“Most ICU patients are totally<br />

blacked out the whole time,<br />

whereas I was totally responsive –<br />

I just couldn’t breathe,” he said.<br />

From the start, doctors told Chris<br />

he may never fully recover, citing<br />

that people living with Guillain-<br />

Barré rarely made significant<br />

recoveries past the two-year mark.<br />

But giving up was never an option<br />

for Chris.<br />

“At two years, I was still having<br />

help with everything. I could hardly<br />

feed myself or do anything at that<br />

point,” he explained. “If I went off<br />

what the textbooks say, life now<br />

would be pretty different.”<br />

“I have just never given up. I’ve<br />

been lucky that I haven’t had<br />

to go straight back to work, I’ve<br />

still been able to do my rehab<br />

and that I have had <strong>MSWA</strong>,<br />

they have done a lot for me.”<br />

“The physios have been incredible,<br />

to be honest – it makes me<br />

emotional to think about it.”<br />

Now seven years along his journey<br />

with Guillain-Barré, Chris is close<br />

to walking and is in the process<br />

of applying for semi-robotic knee<br />

joints which he trialed in Perth.<br />

“The end goal is to use them<br />

around the house with a walker<br />

frame to start with, then crutches,<br />

so that’s what we are working on in<br />

physio at the moment,” he said.<br />

As well as representing his<br />

country on a global scale, the selfproclaimed<br />

“rev head” is also in his<br />

fourth season of racing go-karts,<br />

which Chris modified himself, with<br />

some help from his carers, to be<br />

hand controlled.<br />

“Funnily enough, I think go-karting<br />

is what has done so much for my<br />

upper-body strength. It’s as good<br />

for rehab, as it is for mental health,”<br />

he said.<br />

Reflecting back, Chris said his<br />

journey had opened his eyes to a<br />

whole new world. But through it all,<br />

Chris is an unstoppable force when<br />

it comes to achieving his goals.<br />

From all of us here at <strong>MSWA</strong>, a<br />

huge congratulations to Chris<br />

McEncroe on his incredible<br />

achievement for Australia!<br />

10<br />




<strong>MSWA</strong> CLIENT FORUM <strong>2023</strong><br />



Clients gained insight from<br />

Do you feel like you need more<br />

<strong>MSWA</strong>’s neurological research<br />

guidance with your physical<br />

partners and <strong>MSWA</strong> clinicians on<br />

activity and how it relates to<br />

a range of developments at this<br />

your needs?<br />

year’s Client Forum on 6 July.<br />

Back in May, the Physiotherapy<br />

Associate Prof. Jennifer Rodger, of<br />

Team promoted Exercise Right<br />

Perron Institute for Neurological<br />

Week <strong>2023</strong>. Exercise Right Week<br />

and Translational Science, opened<br />

is an annual public awareness<br />

the event with the findings of<br />

campaign powered by Exercise and<br />

her stimulating remyelination<br />

Sports Science Australia (ESSA), the<br />

research journey which captivated<br />

governing body of our Accredited<br />

the audience.<br />

Exercise Physiologists. The theme<br />

Prof. Moira Sim, Dr Travis<br />

Cruickshank and Dr Mitchell<br />

Turner, of the School of Medical<br />

and Health Sciences at Edith<br />

Cowan University, also presented<br />

the results and future direction<br />

for Exercise Right Week <strong>2023</strong> was<br />

'The Right Advice', highlighting<br />

the importance of seeking<br />

individualised and tertiary qualified<br />

advice for exercise, health and<br />

sporting needs.<br />

of their SPIN research program<br />

(Systematic Profiling in<br />

Neurological Conditions) and<br />

how Clients can get involved.<br />

Clients also heard about new<br />

services now offered at <strong>MSWA</strong>,<br />

including the Physiotherapy<br />

Team’s Lymphoedema<br />

Service, as presented by Senior<br />

Physiotherapist Randall Rooney,<br />

and Occupational Therapy’s<br />

Supported Lying Service, presented<br />

by Caitlin Ross, Rachel Karsakis and<br />

Samantha Warne.<br />

We also discovered more about<br />

the role of <strong>MSWA</strong>’s accredited<br />

exercise physiologists, and how<br />

this role differs from that of<br />

physiotherapists and physiotherapy<br />

assistants. CMO Tony Millar then<br />

highlighted the various fundraising<br />

initiatives underway at <strong>MSWA</strong>,<br />

which aim to put our Clients back<br />

in the spotlight.<br />

If you were not able to make it to the forum,<br />

you can review the presentations on our <strong>MSWA</strong><br />

YouTube Channel. Scan the QR code to view.<br />

What is an Accredited Exercise<br />

Physiologist (AEP)?<br />

AEPs are tertiary qualified allied<br />

health professionals who adopt<br />

evidence-based, person-centered<br />

approaches to work with Clients<br />

holistically. We use exercise as<br />

medicine to treat, manage and<br />

prevent chronic and complex<br />

health conditions and disabilities.<br />

Why is seeking the right<br />

advice important?<br />

In today’s digital world it can<br />

be incredibly confronting and<br />

overwhelming, with the copious<br />

amounts of information available,<br />

to commence safe and effective<br />

exercise that is specific to you.<br />

Seeking the right advice is<br />

especially important for complex<br />

chronic conditions, as your body’s<br />

physiological reaction can<br />

change depending on the<br />

exercise prescription.<br />

We’re all guilty of going to Dr.<br />

Google when we’re unsure of the<br />

right advice. But let’s face it, you<br />

wouldn’t take your phone to a<br />

mechanic, right? Following correct<br />

information regarding your health<br />

is important to ensure there is<br />

purpose and reasoning behind<br />

what you are doing.<br />

So, what is the right advice?<br />

Our Exercise Physiology and<br />

Physiotherapy team will safely<br />

guide you towards the best course<br />

of action to address your needs<br />

and goals.<br />

We believe in ensuring your<br />

experience is enjoyable and<br />

realistic to build a sustainable,<br />

positive and long-term relationship<br />

with physical activity. Education,<br />

empowerment and a holistic<br />

approach are important aspects<br />

we consider when working with<br />

you as a team to create a plan that<br />

is right for you.<br />


<strong>MSWA</strong> ACCREDITED<br />


If you’re finding it hard to know where to start, or want to consult with<br />

one of our team members, email ashleigh.castledine@mswa.org.au<br />

12<br />











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

Negative thoughts are pushy<br />

little mojo-stealing pirates. They<br />

are persuasive, intrusive and<br />

powerful. Our thoughts will<br />

influence how we feel, which<br />

influence what we do and how<br />

we see ourselves.<br />

It isn’t so much the thoughts that<br />

are the problem, but what those<br />

thoughts are allowed to become.<br />

Negative thoughts that come<br />

and go without settling in are no<br />

problem at all. We all have them<br />

from time to time.<br />

The ones that cause trouble are<br />

the ones that swagger in, claim<br />

their place at the table and<br />

outstay their welcome. Even more<br />

boldly, they’ll run a convincing<br />

argument that they must stay<br />

to protect you from all sorts of<br />

perceived harmful situations.<br />

If only negative thoughts could<br />

find their way out as easily as<br />

they find their way in – but<br />

negative thoughts don’t tend to<br />

work that way. In fact, the more<br />

we try to push them out, the more<br />

they’ll push back. When we slam<br />

the door, they’ll hustle through<br />

the window. When we run,<br />

they’ll chase.<br />

Let’s try a little experiment.<br />

What’s happened to your pink<br />

Whatever you do, no matter what, elephants now?<br />

for the next 10 seconds: DO NOT<br />

How you manage negative<br />


thoughts is as unique as you are,<br />

DO NOT think of pink elephants. and you will need to practice<br />

Whatever you do, DO NOT think of finding the strategy that works<br />

pink elephants!<br />

for you.<br />

What were you thinking about? I If you would like to explore your<br />

bet it was about pink elephants. pink elephants further, the<br />

That’s because we cannot just counsellors at <strong>MSWA</strong> may be<br />

tell ourselves to not think about able to assist you. Just speak to<br />

something. You must replace it your Client Liaison Coordinator<br />

with something else.<br />

or contact the counselling team<br />

on 0455 453 620.<br />


Imagine BLUE MONKEYS<br />

EVERYWHERE so many<br />


Here are just a few ideas to help you make a start;<br />

there are many more.<br />

Engage in a guided meditation or mindfulness exercise.<br />

Find an activity that you enjoy to fully occupy your mind.<br />

For example, walking, art, music, or my favourite, which is<br />

to spend time with your pets.<br />

Engage in a social activity with friends or family.<br />

Write down your intrusive thoughts.<br />

Recognise your thought as an intrusive thought and<br />

acknowledge it.<br />

Remind yourself that thoughts are just thoughts, and<br />

there is no need to fear or act on them.<br />






Two of the most frequently asked questions of <strong>MSWA</strong> Occupational<br />

Therapists (OTs) are ‘what does Assistive Technology (AT) mean?’ and<br />

‘how do I know if AT is low cost?’. Often this is followed by ‘does a flat<br />

screen TV count as AT?’.<br />

The landscape of assistive technology is vast and overwhelming. Our<br />

Clients often report feeling lost in a sea of suppliers advertising their<br />

shower chair, adapted tap turner, cooling vest... (the list goes on) as<br />

‘the best on the market’. Additionally, the means of purchasing lowcost<br />

items vary based on each funding stream (National Disability<br />

Insurance Scheme, Home Care Package and Community Aids and<br />

Equipment Program).<br />

The interactive Low-Cost AT Group, run by the <strong>MSWA</strong> Occupational<br />

Therapy department, provides participants with:<br />

/ Information on what low-cost AT is<br />

/ How low-cost AT is funded, depending on the stream<br />

and how to obtain it<br />

/ Education on the different kinds of AT available, depending on<br />

area of the home or diagnosis<br />

/ A list of trusted suppliers<br />

/ Interactive case studies to apply knowledge learned during<br />

the workshop<br />

/ An opportunity to view some low-cost items in person<br />

We will also identify where you will need further support from your<br />

Occupational Therapist in securing funding depending on the item.<br />

Our first group will be conducted on Friday, 15 September at our<br />

Wilson facility.<br />

If you are interested in attending a Low-Cost AT group, please<br />

contact our Occupational Therapy line on 9365 4854 or email us<br />

at ot.groups@mswa.org.au. From there, one of our Occupational<br />

Therapy Assistants will get in touch and discuss further details.<br />

We also provide light refreshments and lots of laughter! We look<br />

forward to seeing you soon and hope our low-cost group is of high<br />

value to you.<br />



Group speech therapy is a great<br />

way to target your speech goals in<br />

a natural setting.<br />

An eight-week treatment block of<br />

group speech therapy was recently<br />

completed with a small group of<br />

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

In these groups, Clients came<br />

together to work on speech, voice<br />

and high-level language (memory,<br />

attention, word-finding etc.).<br />

This was also a great opportunity<br />

to socialise, build connections and<br />

have some fun, in a supportive but<br />

relaxed environment.<br />

Clients took part in voice exercises,<br />

practiced clear speech strategies<br />

and participated in fun language<br />

activities such as Family Feud,<br />

Taboo and Celebrity Heads.<br />

Clients reported that the groups<br />

were very enjoyable, and it was<br />

great to have conversations with<br />

other like-minded individuals,<br />

whilst targeting therapy goals.<br />

If you would like to attend future<br />

speech groups, please contact<br />

Speech Pathology via<br />

speech.pathology@mswa.org.au<br />

or by calling 9365 4888.<br />

Acknowledge the emotions that are present.<br />

14<br />



CHECK IN<br />

ON YOUR<br />


7<br />

8<br />

Plan ahead<br />

Plan out your meals for the week and shop in<br />

advance to achieve a balanced diet. This also<br />

avoids impulse purchases and last-minute<br />

unhealthy meals. As the cost of food increases,<br />

this can also save money!<br />

Eat a rainbow<br />

Choose a range of different coloured fruits and<br />

vegetables to fill up on healthy fibre, get a range<br />

of vitamins and minerals, boost gut health,<br />

manage weight and reduce chronic disease risk.<br />

How healthy are your eating and shopping habits? Here is a helpful checklist compiled by <strong>MSWA</strong> Senior<br />

Dietitian Misty Reinkowsky with practical advice to improve your nutrition.<br />

1<br />

2<br />

3<br />

Choose seasonal produce<br />

Eating fruit daily, in<br />

particular the citrus fruit<br />

in abundance in Western<br />

Australia at the moment,<br />

helps keep our immune<br />

systems working efficiently.<br />

Add in some Omega 3s<br />

Omega 3s are fatty acids<br />

which have been shown to<br />

help reduce inflammation in<br />

the body. The best sources<br />

of Omega 3s are fish, fish<br />

oil, cod-liver oil and other<br />

seafood, but you can also find<br />

them in plant food such as flaxseed,<br />

walnuts, chia, pecans and flaxseed oil.<br />

Add nuts!<br />

There is an ever-growing<br />

body of evidence which<br />

suggests the daily<br />

consumption of nuts has an<br />

association with decreased<br />

disease risk and improved<br />

quality of life outcomes.<br />

Adding raw, unsalted almonds, walnuts,<br />

brazil nuts, or a nut mixture to your diet is a<br />

great and healthy way to boost the quality of<br />

your diet. Remember a serve of nuts is<br />

approximately 40 grams.<br />

<br />

4<br />

5<br />

6<br />

Choose healthy fats<br />

Unsaturated fats from foods<br />

like nuts, seeds, avocado<br />

and Australian Extra Virgin<br />

Olive Oil are beneficial in<br />

small amounts, as part of a<br />

healthy diet.<br />

Eat mindfully<br />

Increase enjoyment and<br />

awareness of your<br />

meal/snack. Limit distractions<br />

at mealtimes, chew food well<br />

and pay attention to how full<br />

you feel. Stop eating once you<br />

feel satisfied, even if your plate<br />

isn’t empty. You can keep the<br />

leftovers for the next meal.<br />

It’s all about balance<br />

Choose whole foods first. Limit<br />

processed foods, choose mostly<br />

plant foods and eat a variety of<br />

food from the five food groups<br />

for optimal health. These are:<br />

/ Vegetables<br />

/ Fruits<br />

/ Meat and alternatives<br />

/ Grain foods<br />

/ Dairy and alternatives<br />



Prep: 35 mins<br />

Cook: 20 mins<br />

Servings: 5<br />

Ingredients:<br />

/ 400g can no-added-salt<br />

pink salmon, drained<br />

/ 300g sweet potato<br />

/ 3 spring onions (including green tops)<br />

/ 1 red capsicum<br />

/ 1/2 cup reduced-fat cheddar cheese<br />

/ 10 slices sundried tomato<br />

/ 1 egg<br />

/ 1 tbs parsley, dried<br />

/ 3 tsp lemon rind<br />

/ 1 tsp dill, dried<br />

/ 1/2 cup breadcrumbs<br />

/ Pepper<br />

/ 2 tsp canola oil<br />

Method:<br />

1. Peel and dice sweet potato, place<br />

in a saucepan with water and cook<br />

until soft.<br />

Recipe sourced from: livelighter.com.au/recipe/511/salmon-patties<br />

2. Grate cheese, dice spring onion,<br />

sundried tomatoes and capsicum.<br />

3. Drain potatoes and mash until smooth.<br />

4. In a large bowl combine salmon,<br />

sweet potato, spring onion, sundried<br />

tomatoes, capsicum, egg, cheese,<br />

lemon rind, parsley, dill and pepper.<br />

5. Form 10 even patties and roll in<br />

crumbs, coat well. Place in refrigerator<br />

for 20 minutes to chill.<br />

6. In a fry pan heat canola oil and pan fry<br />

each patty until golden brown on both<br />

sides and cooked through.<br />

7. Serve two patties per person.<br />

16<br />





For part four of this series, we explore the important role water<br />

plays in digestive and urinary system health.<br />



Chronic Constipation<br />

Dehydration is one of the leading causes of chronic constipation. The food we eat<br />

makes its way through the body via the stomach to the large intestine (colon). If<br />

you don’t have enough water present in your body already, the colon soaks up<br />

water from the waste products present in the colon. This results in hard stool<br />

which is difficult to pass. An over-full bowel due to constipation can press on the<br />

bladder, reducing the amount of urine it can hold or make you feel like you<br />

need to pass urine urgently.<br />

Severe constipation is one of the most common causes of faecal incontinence.<br />

Hard bowel motions are difficult to pass and may cause a partial blockage higher<br />

in the bowel. This results in watery bowel motions flowing around the constipated<br />

stool without warning, which can be mistaken for diarrhoea.<br />

Adequate Hydration vs Infections<br />

A Urinary Tract Infection (UTI) is an infection in any part of your urinary system -<br />

your kidneys, ureters, bladder and urethra. The majority of UTIs are associated with<br />

the lower urinary tract i.e. the bladder and urethra. Increasing water intake will help<br />

women avoid UTIs. This widely held belief was backed by an independent study<br />

published in the Journal of the American Medical Association (JAMA). Women are<br />

at a greater risk of developing a UTI than men due to their shorter urethras.<br />

UTIs don’t always cause signs and symptoms in men and women.<br />

However, when they do, they may include:<br />

/ A strong, persistent urge to urinate<br />

/ A burning sensation when urinating<br />

/ Passing frequent, small amounts of urine<br />

/ Urine that appears cloudy<br />

/ Urine that appears red, bright pink or cola-colored, a sign of blood in the urine<br />

/ Strong-smelling urine<br />

/ Flank pain (the area between the upper abdomen and the back)<br />

/ Pelvic pain, in women — especially in the center of the pelvis and around the<br />

area of the pubic bone<br />

If you suspect you or someone you know may have a UTI, it is important to<br />

see a doctor as soon as possible, as there could be serious consequences<br />

if the infection spreads to your kidneys.<br />

In part five of our hydration series, you can learn more about<br />

continence and ways to help manage bladder and bowel dysfunction.<br />

Kidney Stone Disease<br />

The incidence of kidney stone disease is rising worldwide. Currently, increasing<br />

fluid intake is recommended as the most ideal prevention. However, to date<br />

there has been inconsistent evidence surrounding optimum volumes<br />

and types of fluid that affect stone formation.<br />

Stone formation has been directly associated with a lack of fluid intake and<br />

is by far one of the most common causes of kidney stone formation. Kidney<br />

stones are formed from minerals and salts present in the urine, which combine<br />

to create hard deposits inside the kidney. This is likely due to the effect low<br />

fluid intake has on the production of urine, which results in concentrated urine<br />

and therefore an increase in the concentration of these minerals and salts in<br />

the urine. Over 80 per cent of kidney stones are made up of calcium oxalate,<br />

whereas uric acid stones make up 8 – 10 per cent of stones worldwide.<br />

As we highlighted in the previous articles in this series, our bodies use some<br />

of the water that we drink for necessary processes, like digestion, and we<br />

also lose water through sweat. Urine volume is therefore not identical to fluid<br />

intake. For this reason, people who are prone to kidney stones may be directed<br />

by their doctor to increase their fluid intake.<br />

You might have seen advertisements in magazines or on social media<br />

promoting different types of water and listing their health benefits. So, you<br />

may ask if there is a ‘best’ type of water to prevent the formation of kidney<br />

stones. The answer is simple: there is no scientific data that demonstrates<br />

that one type of water is better than another in preventing kidney stones.<br />

The key to preventing kidney stones is to increase and maintain an<br />

adequate urine volume.<br />

Soft Drinks<br />

With this information in mind, you might think it is OK to<br />

include soft drinks towards your fluid intake. But beware!<br />

Research shows dark soft drinks such as cola have been<br />

shown to increase the risk of kidney stones. So, if water is not<br />

your ‘thing’ we recommend reading Gemma’s article Stay<br />

Hydrated this summer in our Summer <strong>2023</strong> Edition of <strong>Bulletin</strong> for her<br />

tricks of the trade on how to increase your fluids in a fun and tasty way.<br />

If you have recurrent kidney stones, you may need to follow a special diet.<br />

First, your doctor will run tests to find out what type of stones you form.<br />

From these, your doctor or dietician can determine which diet changes<br />

might be right for you.<br />

References:<br />

Kidney Stone Prevention: How Much water Should You Drink? K. McCallum (Jan <strong>2023</strong>)<br />

The role of fluid intake in the prevention of kidney stone disease: A systematic review over the<br />

last two decades. Turk J Urol. (Nov 2020) 46 (Suppl 1): S92–S103. DOI: 10.5152/tud.2020.20155<br />

Can drinking more water help women fight urinary tract infections? D. Sparks. (Oct 2018)<br />

Effect of Increased Daily Water Intake in Premenopausal Women With Recurrent Urinary Tract<br />

Infections A Randomized Clinical Trial. JAMA Internal Medicine. T. M. Hooton, et al. (July 2018)<br />

Faecal Incontinence: Constipation. Continence Foundation of Australia. (Aug 2021)<br />

18<br />



It’s this social aspect that John<br />

finds so important, which is<br />

beneficial for both Clients and<br />

volunteers alike. He encouraged<br />

anyone thinking of volunteering to<br />

get involved, as it is an opportunity<br />

to connect with the community,<br />

improve wellbeing and give back.<br />




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

“I’d just like to see more people do<br />

it; get people out of the pattern<br />

that they have in their lives, look<br />

around and do something positive,<br />

something you are capable of<br />

doing” he said.<br />

“As you get older there is less<br />

things you can do, that’s part of life,<br />

but meeting people – there is no<br />

restriction on that.”<br />

This year, John was recognised<br />

with a nomination in the<br />

WA Lifetime Contribution to<br />

Volunteering category of the<br />

When John Robertson first<br />

started volunteering at <strong>MSWA</strong>,<br />

“I started doing eight hours a week,<br />

which lasted a year until I was<br />

“While some of the ladies couldn’t<br />

do things physically, they knew<br />

<strong>2023</strong> WA Volunteer of the Year<br />

awards for his incredible work.<br />

Google was a new kid on the<br />

block, the assembly of the<br />

International Space Station had<br />

only just begun and you still<br />

couldn't use your landline and<br />

internet at the same time!<br />

Safe to say, in his 24 years of<br />

officially retired, but then I just<br />

kept going,” he said. “What was<br />

half a day a week became one day,<br />

then two.”<br />

“As you can see, it’s a fairly big<br />

property [at Wilson] and when I<br />

started it was all scrub at the back.<br />

how to grow plants and they gave<br />

me a lot of ideas to grow plants<br />

from cuttings – so that is where<br />

many of the plants around the<br />

place have come from.”<br />

“It gets to be like family after a<br />

while, with the Clients.”<br />

“John’s unselfish and noble actions<br />

in his work boots and gloves leave<br />

a trail of radiant garden beds at our<br />

Wilson facility for all staff, Clients,<br />

and visitors,” said <strong>MSWA</strong> Lead<br />

Manager of Property Development<br />

and Construction Steve Corbett.<br />

dedicated service, John has borne<br />

witness to many changes – but his<br />

passion for the people at <strong>MSWA</strong><br />

has never faltered.<br />

Initially, his volunteer work as a<br />

handy man and gardener was to<br />

bridge the year-long gap between<br />

his retirement from the mining<br />

industry and access to the pension<br />

at age 65.<br />

What he didn’t expect was for this<br />

new venture to become a vocation<br />

he was so passionate about.<br />

There were always things to do,<br />

but I also found it was such a good<br />

place to work.”<br />

“Being a volunteer, there was no<br />

pressure on me to do things,<br />

but I felt a moral obligation to<br />

do things.”<br />

His time volunteering has<br />

proved a valuable learning<br />

experience, with many <strong>MSWA</strong><br />

Clients helping to grow his<br />

knowledge over the decades.<br />

“A lot of the Clients here,<br />

particularly the ladies with MS,<br />

knew more about gardening than I<br />

will ever know,” he said.<br />

John said <strong>MSWA</strong> had always made<br />

him feel welcome and “accepted<br />

as one of the troops”, being able<br />

to join in with Client activities,<br />

lunches and morning teas.<br />

Above all else, John’s most<br />

important duty is to connect with<br />

Clients – and he is always prepared<br />

for a chat.<br />

“One thing they told me at the<br />

start is, if any of the members want<br />

to talk – talk,” he said. “They are<br />

always more important than the<br />

job I’m currently doing.”<br />

“You meet a lot of people and talk<br />

to them. There are a lot of people<br />

that want me to come and look<br />

after their garden,” he laughed.<br />

“For the past 24 years, John has<br />

been available to help <strong>MSWA</strong><br />

with surrounding gardens<br />

through seasons of heat and rain.<br />

Being a volunteer, John is not<br />

paid; not because he’s worthless –<br />

he is priceless!”<br />

“The longevity of his selfless acts of<br />

kindness in <strong>MSWA</strong> gardens make<br />

it a better place. His touch extends<br />

to the inside of the building, with<br />

staff able to fill vases with healthy<br />

vibrant flowers from our very own<br />

gardens in meeting rooms, offices,<br />

and reception areas.”<br />

"We learnt long ago John is<br />

the backbone of our successful<br />

landscapes, and <strong>MSWA</strong> would be<br />

lost without his devoted efforts.”<br />


<strong>2023</strong> <strong>MSWA</strong> OCEAN RIDE!<br />

Come and join us bright and early<br />

as we send off all our fantastic riders<br />

completing the 10km Family Ride,<br />

30km, 50km, 70km, 100km, 120km<br />

and 140km courses.<br />

With volunteering locations in Fremantle, Scarborough,<br />

Hillarys and all the way along the course, there's something<br />

for everyone! Job roles include helping setup and pack<br />

down, registering participants, marshalling riders along the<br />

course and helping hand out medals, fruit and water.<br />

Join the team by contacting<br />

events@mswa.org.au or call us on (08) 6454 3131<br />

20<br />




Christmas in July<br />

<strong>MSWA</strong> Beechboro Outreach got into<br />

the holiday spirit with a Christmas in<br />

July celebration featuring the musical<br />

stylings of local musical artist Drea.<br />

The non-alcoholic mulled wine was<br />

a hit!<br />

Sanctuary Planting Day<br />

The green thumbs at Wilson Outreach got their hands<br />

dirty to plant the newly installed vertical gardens in the<br />

refurbished Sanctuary Garden.<br />

Together, Clients and staff transformed the space with a<br />

vibrant mix of flowers, ornamentals, ferns and edible plants.<br />

A big thank you to the Facilities Team for making it possible.<br />

Casino Royale<br />

Clients at <strong>MSWA</strong> Wilson Outreach were feeling lucky<br />

after the Atrium was transformed into a casino in July.<br />

From blackjack to roulette, everyone was a winner at<br />

Casino Outreach!<br />

International Nurses Day<br />

<strong>MSWA</strong> Bunbury Outreach hosted Senior Neurological Nurse<br />

Nimisha Baird as guest speaker for International Nurses Day,<br />

who shared her story with Clients.<br />




If you live near Perth, Rockingham, Bunbury or<br />

Albany and are interested in a trial to experience<br />

the Outreach community, get in touch with<br />

Senior Community Outreach Coordinator<br />

Melissa Coombs via outreach@mswa.org.au<br />

Outreach opening times<br />

Wilson Mon, Tues, Wed + Thurs 8.30am – 2pm<br />

Beechboro Mon + Fri 8.30am – 1pm<br />

Rockingham Tues, Wed + Fri 8.30am – 1pm<br />

Bunbury Wednesday 9am – 12pm<br />

Albany Friday 9am – 12pm<br />

Mother’s Day High Tea<br />

<strong>MSWA</strong> Bunbury Outreach also hosted<br />

a special Mother’s Day High Tea in May,<br />

featuring an impressive raffle made possible<br />

through Client and staff donations.<br />


<strong>MSWA</strong> Butler Accommodation Staff Appreciation<br />

The hard work and dedication of the <strong>MSWA</strong> Butler<br />

Accommodation team was recognised with a<br />

morning tea in July, where staff were presented<br />

with appreciation gifts.<br />

22<br />




WORLD MS DAY <strong>2023</strong><br />

Creativity and conversation<br />

flourished across four <strong>MSWA</strong><br />

locations in recognition of<br />

World MS Day on May 30, with<br />

more than 140 Clients and staff<br />

coming together for a special<br />

‘paint and sip’ event.<br />

Professional artists Fiona Rafferty<br />

and Clare Davenhall, from the<br />

Bunbury Regional Art Gallery,<br />

and Miles Carpenter and Joanne<br />

Bowman, from the Fremantle Arts<br />

Centre, led participants at Bunbury,<br />

Rockingham, Wilson and Butler to<br />

create a painted masterpiece on<br />

puzzle pieces.<br />

Our Facilities Team is now hard<br />

at work bringing these individual<br />

artworks together to create ‘the<br />

full picture’ of each location;<br />

showing that despite our unique<br />

personalities and differences, we<br />

are one connected community<br />

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

As well as the joy of taking some<br />

time to be creative, it was great<br />

to see new connections and<br />

friendships formed throughout<br />

each session.<br />

Scan for the full gallery<br />

of images from <strong>MSWA</strong>’s<br />

Paint and Sip events<br />




In honour of World MS Day,<br />

the Mounts Bay Bridge,<br />

Joondalup Drive Bridge,<br />

Tonkin Highway Sky Ribbon<br />

and Northbridge Tunnel shone<br />

red into the early hours on<br />

May 30 in a show of support<br />

for people living with MS.<br />

<strong>MSWA</strong> Board Director John<br />

Patmore and other members<br />

of our community sent in these<br />

snaps of the landmarks proudly<br />

shrouded in red.<br />

<strong>MSWA</strong> Board Director John<br />

Patmore admires the Mounts Bay<br />

Bridge lit up red for World MS Day.<br />

24<br />




UP TO THE<br />


FOR <strong>MSWA</strong><br />

Scan for the<br />

full gallery<br />

Commonwealth Bank representatives Karen and Adrian present their<br />

generous donation to <strong>MSWA</strong> Chief Marketing Officer Tony Millar.<br />

The Ruggiero Foundation, our <strong>2023</strong> highest fundraising team.<br />

The <strong>2023</strong> <strong>MSWA</strong> Step Up - Powered by Commonwealth Bank event<br />

was a great success, with over 800 participants and $163,885 raised for<br />

people living with neurological conditions.<br />

The event, held in the Central Park Building, saw participants climbing<br />

the steps of Perth’s tallest building.<br />

The atmosphere on the day was electric, with families, friends and<br />

colleagues cheering on their loved ones as they took on the challenge.<br />

Our top fundraisers were recognised on the day, with top individual<br />

fundraiser, Nicholas Ruggiero, raising an impressive $5,675, assisting<br />

his team – the Ruggiero Foundation – to also claim the highest<br />

fundraising team title, raising over $24,000.<br />

Colin Ottaway took out the most steps climbed with a huge 24 climbs<br />

– that's over 24,000 steps!<br />


CASH FOR <strong>MSWA</strong><br />

There is nothing hairdresser<br />

Shenae Wilson won’t do for her<br />

friends, especially when it comes<br />

to one of her best friends, Cherone,<br />

who lives with MS.<br />

In May, Shanae transformed her<br />

Wangara salon into a fundraising<br />

hub – offering patrons blow outs<br />

and hair styling services, with 100%<br />

of the proceeds donated to <strong>MSWA</strong>.<br />

“Cherone was diagnosed around 15<br />

years ago, but thanks to <strong>MSWA</strong> and<br />

all of the money they have invested<br />

in research, the treatment she<br />

receives means she lives a pretty<br />

normal life,” Shenae said.<br />

Shenae’s support continued on<br />

into June, where she and her<br />

husband Travis climbed the<br />

Central Park tower in the Step<br />

Up for <strong>MSWA</strong> event.<br />

“I did the double up, my husband<br />

did the multi climb eight times<br />

and my girlfriend did it three times.<br />

I’m obviously the most unfit one,<br />

because the second time was hard<br />

enough!” she laughed.<br />

We also must give a special mention to our very own <strong>MSWA</strong> staff<br />

In all, Shenae raised $1825 through<br />

member and Client Tracey Hockey, who with the support of her son,<br />

her salon fundraiser and almost<br />

Keenlan, took to the stairs five times!<br />

another $1000 with her husband<br />

The event would not have been possible without the support<br />

for Step Up.<br />

of our sponsors and volunteers, including Commonwealth<br />

“Just get involved – it helps so<br />

Bank and Central Park. We are grateful for their ongoing<br />

many people and it’s always great<br />

commitment to supporting West Australians living with<br />

to support a cause, so why not<br />

neurological conditions.<br />

choose something that means<br />

Overall, the <strong>2023</strong> <strong>MSWA</strong> Step Up – Powered by Commonwealth<br />

something to you and make a<br />

Bank event was a fantastic day, filled with inspiration, challenge and<br />

difference?” Shenae said.<br />

community spirit.<br />

“I have seen firsthand the<br />

We thank all participants, volunteers and sponsors for making it such<br />

difference <strong>MSWA</strong>’s investment in<br />

a success!<br />

research has made and how they<br />

help people living with MS live<br />


Colin Ottoway on his<br />

<strong>MSWA</strong> Client and staff member Tracey<br />

<strong>MSWA</strong> SENIOR EVENT COORDINATOR<br />

longer and fuller lives.”<br />

26<br />

way to 24 climbs!<br />

Hockey with her son, Keenlan.<br />


EVENTS<br />

<strong>2023</strong> <strong>MSWA</strong> OCEAN RIDE<br />


Canine star, Stan.<br />

Lotteries Marketing Officers Vanessa<br />

and Sam on confetti control duties<br />

Hananeh, Brodie and Hayley<br />

celebrate wrap up on set.<br />

The <strong>2023</strong> <strong>MSWA</strong> Ocean Ride is<br />

coming up quick and promises to<br />

be a day filled with excitement,<br />

with a distance for everyone!<br />

This year's ride will again take place<br />

on the beautiful Western Australian<br />

coastline in November, with the<br />

Stationary Cycle Challenge also close<br />

to pedalling off, providing our <strong>MSWA</strong><br />

Clients the opportunity to take part<br />

in their physiotherapy sessions!<br />

Whether you are an experienced<br />

rider or a newcomer, the <strong>MSWA</strong><br />

Ocean Ride is the perfect<br />

opportunity to challenge yourself<br />

and raise funds for a great cause.<br />

As you prepare for the ride, it's<br />

important to remember that this<br />

is not just a cycling event – it's a<br />

community effort to show our<br />

support for West Aussies living with<br />

neurological conditions.<br />

Every kilometre you ride and every<br />

dollar you raise will make a real<br />

difference in the lives of those who<br />

need it most. So: train hard, stay<br />

focused and get ready to make a<br />

positive impact!<br />


Staff and Clients will receive<br />

free registration; be the first<br />

know by registering your<br />

interest on our website,<br />

mswaoceanride.org.au.<br />

Mark your calendars, gather your<br />

friends and family, and get ready to<br />

join thousands of other riders for a<br />

day of excitement, adventure and<br />

giving back.<br />

From all of us at <strong>MSWA</strong>, we want to thank longtime<br />

supporters Pharmacy 777 for their passion<br />

and commitment to our cause, with the team<br />

The <strong>2023</strong> <strong>MSWA</strong> Ocean Ride will be<br />

held on Sunday, 12 November <strong>2023</strong>.<br />


<strong>MSWA</strong> SENIOR EVENT<br />


raising an astounding $47,240 for West Australians<br />

living with neurological conditions as part of the<br />

HBF Run for a Reason.<br />

We were blown away by this effort, which also saw<br />

Pharmacy 777 take home the crown for highest<br />

fundraising team across the whole event.<br />

Congratulations and thank you for making a lasting, positive impact on our community.<br />


<strong>MSWA</strong>’s marketing department, led by the lotteries team, has been hard at work behind the scenes pulling<br />

together another incredible Mega Home Lottery campaign, due to launch on Monday, September 4!<br />

There will be some familiar faces featuring on screens across WA this time around, as we have packed our<br />

commercials full of <strong>MSWA</strong> staff, with <strong>MSWA</strong> Client Hayley Long playing a starring role. There was even a<br />

canine actor on set – much to everyone's excitement!<br />

There will be three more incredible properties up for grabs during this campaign and we had plenty of fun<br />

checking out the amazing features while on set.<br />

Here is a little sneak peek of what is to come – make sure you keep an eye out for the campaign launch<br />

on mswalottery.com.au.<br />

<strong>MSWA</strong> Client Hayley Long.<br />


The <strong>MSWA</strong> marketing team<br />

has sure been busy, with team<br />

members Hananeh Arzavi, Laura<br />

Radicevic and Deb Packer visiting<br />

Providence Christian College in<br />

August to talk to students about<br />

MS Readathon!<br />

For the month of August, every<br />

book you read will raise money for<br />

kids and their families impacted by<br />

multiple sclerosis. Find out more<br />

at www.msreadathon.org.au<br />

Our star extras from lotteries,<br />

recruitment and marketing.<br />


Do you have a story about living with a neurological condition in WA<br />

that other <strong>MSWA</strong> Clients might like to read? We invite you to share<br />

your experiences with us.<br />

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


We want to hear from you. Your feedback helps us to understand<br />

what is working well and where we can improve.<br />

You can raise a concern or acknowledge the support an <strong>MSWA</strong> staff<br />

member has provided by telephoning the Complaints Liaison and<br />

Compliance Coordinator, Davina Sawyer on 6454 3146, via email<br />

feedback@mswa.org.au or writing to Quality and Compliance;<br />

Locked Bag 2, BENTLEY DC 6983.<br />

What a rig!<br />

Alternatively, you can speak with the coordinator of your services.<br />

For more information, visit mswa.org.au/about-mswa/contact-us.<br />

28<br />





Thriving with Multiple Sclerosis<br />

<strong>MSWA</strong> Client Rob Cridge recently<br />

took on the challenge of giving a<br />

TEDx talk in Kinjarling (Albany), as<br />

part of the ‘Imagine’ themed event.<br />

Rob talks about how making<br />

small changes in your life can, and<br />

will, lead to positive outcomes in<br />

the future, how to become more<br />

engaged in life and how to not<br />

sweat the small stuff.<br />

Rob’s list of achievements is<br />

pretty amazing and you can<br />

watch his inspiring talk here:<br />

https://youtu.be/dq2gt-CK0lo<br />

“I was diagnosed with Multiple<br />

Sclerosis... and it is the best thing<br />

that ever happened to me.”<br />

Rob Cridge<br />

‘Tuff’ Love - Drag News feature<br />

Rob isn’t the only star in our midst,<br />

with die-hard Ducati fanatic<br />

and <strong>MSWA</strong> Client Chris Morgan<br />

featured in Drag News <strong>Magazine</strong><br />

in May.<br />

Margaret Doody Respite<br />

The skilled drag racer talks about<br />

House Mural<br />

his passion for motorbikes,<br />

his plans to compete for a<br />

Perth-based artist Liv Robinson<br />

championship and how MS won’t kindly donated her time and<br />

hold him back.<br />

talents to produce a four metre<br />

mural to spruce up Margaret<br />

“When I race my world comes down<br />

Doody Respite's courtyard.<br />

to a very specific group of actions<br />

that I try to refine and perfect.<br />

To make the under-the-sea<br />

Nothing can distract me. It is a world themed masterpiece more special,<br />

of looking for the perfect run and a Liv bought the artwork to <strong>MSWA</strong><br />

world where I no longer have MS.” Wilson Outreach, guiding Clients to<br />

Chris Morgan<br />

add the finishing touches.<br />

Read the full story at<br />

We hope our Clients visiting respite<br />

dragnews.com.au/tuff-love/<br />

will enjoy the new scenery!<br />

May 50K<br />

A team of <strong>MSWA</strong> employees and Clients showed their support for the<br />

MS community by participating in the May 50k.<br />

Together, they fundraised $1,307 for the cause, logging an<br />

impressive 1,015km!<br />

A huge congratulations to the team for getting involved and thank you<br />

to all who supported with their generous donations.<br />



Expressions of interest<br />

Have you been diagnosed with MS in the past 2 years? Do you want to<br />

know more about MS and hear from others living with MS? This information<br />

evening is run by <strong>MSWA</strong> twice a year and is free for Clients and family<br />

members/support people.<br />

In addition to connecting with peers, this session provides insight into our<br />

MS Peer Support program, Employment Support Service and includes a<br />

Q&A opportunity with the <strong>MSWA</strong> Allied Health Panel.<br />

Register your interest to dajana.tesevic@mswa.org.au or call 0429 267 970.<br />

From diagnosis to risk factors and symptom-management, the<br />

Understanding Multiple Sclerosis course is for anyone wanting to<br />

learn more about MS.<br />

The award-winning online course was developed by the Menzies Institute for<br />

Medical Research to improve understanding and awareness of MS.<br />

To date 37,000+ people from more than 170 countries have enrolled.<br />

The six-week online course allows you to study at your own pace. Best of all – it’s completely free.<br />

The next course will begin on 11 September, <strong>2023</strong>.<br />

Visit ms.mooc.utas.edu.au to enrol.<br />


Expressions of interest – September/October school holidays<br />

This workshop is an opportunity for children and families to attend a free, interactive<br />

science-based activity session to learn about MS in an engaging and fun way.<br />

Navigate the nervous system and discover how MS affects the body, while<br />

having fun and connecting with your loved ones. Register your interest to<br />

dajana.tesevic@mswa.org.au or call 0429 267 970.<br />

“The event was great for my kids! They really enjoyed the excellent resources.<br />

My 7-year-old… has been able to understand more and ask more questions.”<br />

20 – 26 AUGUST<br />

21 – 27 AUGUST<br />

4 – 8 SEPTEMBER<br />


11 SEPTEMBER<br />

21 SEPTEMBER<br />


7 – 14 OCTOBER<br />

23 – 29 OCTOBER<br />

29 NOV - 1 DEC<br />

Speech Pathology<br />

Week<br />

Brain Injury<br />

Awareness Week<br />

Women’s Health<br />

Week<br />

World Brain<br />

Day<br />

Understanding MS<br />

course begins<br />

World Alzheimer's<br />

Day<br />

Mental Health<br />

Awareness Month<br />

Mental Health<br />

Week<br />

Occupational<br />

Therapy Week<br />

Progress in MS Research<br />

Conference<br />

30<br />



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