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Bulletin Magazine Birak/First Summer 23

Welcome to the Birak / First Summer 2023 edition of Bulletin. On the cover: Thrill Seeker Chris McEnroe (pictured) and Social Butterfly Susan Finlay breathe new life into the MSWA brand, proving that life is so much more than limits. Inside: PLATYPUS trial brings new hope Margaret Cable: Back to the Bush! National recognition for MSWA team Final Instalment of our hydration series

Welcome to the Birak / First Summer 2023 edition of Bulletin.

On the cover: Thrill Seeker Chris McEnroe (pictured) and Social Butterfly Susan Finlay breathe new life into the MSWA brand, proving that life is
so much more than limits.

Inside:

PLATYPUS trial brings new hope
Margaret Cable: Back to the Bush!
National recognition for MSWA team
Final Instalment of our hydration series

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Thrill Seeker Chris McEnroe (pictured) and<br />

Social Butterfly Susan Finlay breathe new<br />

life into the MSWA brand, proving that life is<br />

so much more than limits.<br />

<strong>Bulletin</strong><br />

Inside<br />

YOUR MSWA MAGAZINE<br />

BIRAK | FIRST SUMMER 20<strong>23</strong><br />

mswa.org.au


Welcome to the <strong>Birak</strong> 20<strong>23</strong><br />

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

WILSON CENTRE<br />

29 Parkhill Way<br />

9365 4888<br />

Contact Us<br />

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

this <strong>Bulletin</strong> please email bulletin@mswa.org.au<br />

For general feedback or complaints please contact<br />

feedback@mswa.org.au<br />

The Noongar Season ‘<strong>Birak</strong>’ is the fire season.<br />

The rain eases and the warm weather starts to take hold,<br />

but the afternoons are cooled by the sea breezes.<br />

Many fledglings are seen venturing out of their nests<br />

while reptiles begin to shed old skins for new ones.<br />

Editorial Working Group<br />

Nicola Washington, Tony Millar, Emily Ace and<br />

Nicolette Murphy.<br />

Contributors<br />

Geoff Hutchinson, Carol Chong, Dajana Tesevic,<br />

Vanishree Chetti, Denise Vogels, James Beckett,<br />

Tracey Hockey, Misty Reinkowsky and Crystal Chan.<br />

Client Engagement Department<br />

Our experienced teams will provide you with<br />

personalised support throughout your service journey<br />

with MSWA. From helping you to access funding, to<br />

working with you to get the most from your selected<br />

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

For more information, please contact 9365 4888.<br />

Our services include:<br />

• Counselling, Peer Support and Health Education<br />

• Community Support & In-home Care<br />

• Dietetics<br />

• Occupational Therapy<br />

• Outreach<br />

• Physiotherapy<br />

• Social Welfare<br />

• Speech Pathology<br />

• Nursing<br />

• Support Coordination<br />

Nursing Support<br />

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

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

Community Nurse: 9365 4888<br />

Monday to Friday (8.00am - 4.00pm)<br />

Outreach at MSWA<br />

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

are interested in a trial to experience the Outreach<br />

community, get in touch via outreach@mswa.org.au<br />

Employment Support<br />

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

specialist employment service for people living with<br />

multiple sclerosis and other neurological conditions in<br />

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

in your current job or find employment in the open<br />

labour market.<br />

Please call: 1300 865 209<br />

See all our supports and services at mswa.org.au<br />

Switch to <strong>Bulletin</strong> online today!<br />

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

digital and connect with more engaging content.<br />

Email us at marketing@mswa.org.au to sign up.<br />

Acknowledgement of Country<br />

In the spirit of reconciliation, MSWA acknowledges the Traditional Custodians of the many lands<br />

and language groups of Western Australia, and their connections to land, sea and community.<br />

We pay our respect to their Elders past and present, and extend that respect to all Aboriginal<br />

and Torres Strait Islander peoples today.<br />

2 3


From our CEO<br />

As we head into summer and<br />

the Noongar season of <strong>Birak</strong>,<br />

we are conscious that whilst the<br />

warm days bring beach days and<br />

barbeques, the heat can mean a<br />

challenging period for some of<br />

our community with neurological<br />

conditions. This issue of <strong>Bulletin</strong><br />

has some great hydration advice<br />

from our Nursing team to help you<br />

get through and for those who love<br />

the beach, there’s an article about<br />

wheelchair beach access.<br />

As we reflect on the last quarter<br />

and look ahead to the next, a lot has<br />

happened and there is much to be<br />

positive about:<br />

<strong>First</strong>ly, we recently announced<br />

our significant support of $3m<br />

for a world-leading clinical trial –<br />

PLATYPUS, which will test the effect<br />

of a number of repurposed drugs<br />

on reversing neurological damage<br />

caused by primary progressive<br />

multiple sclerosis (PPMS). This is<br />

exciting as the results will come<br />

quickly, given the drugs are already<br />

approved for human use. We are<br />

really excited about the possibilities<br />

for this amazing research to improve<br />

the lives of those with PPMS. You<br />

can read more about the trial in<br />

this issue.<br />

Secondly, Perth and MSWA<br />

hosted the MS Australia Progress<br />

in Research Conference in<br />

November and welcomed more<br />

than 200 national and international<br />

researchers. This was also the<br />

first time the conference adopted<br />

a format which included the<br />

community of people with MS to<br />

discuss how research can positively<br />

impact their lives.<br />

A key topic was the benefit of<br />

including the MS community in<br />

co-designing and translating<br />

research. It was wonderful to see<br />

so many of our Clients in the room<br />

– it added such a valuable<br />

perspective to the conference<br />

and the research community.<br />

Thirdly, and in line with the<br />

collaborative and community<br />

focus of the conference, our Client<br />

Advisory and Co-Design Committee<br />

continues to engage on how we can<br />

do things better. A key area of focus<br />

we have agreed on is on improving<br />

Client communications. We’ll keep<br />

you posted on practical updates<br />

as they emerge, but I’d like to thank<br />

the committee for their time, focus<br />

and commitment.<br />

In terms of events and community<br />

engagement, I’m continually amazed<br />

by the support we receive from<br />

our generous WA community. At<br />

the 20<strong>23</strong> MSWA Ocean Ride in<br />

November we saw almost 2000<br />

cyclists take to West Coast Highway<br />

to tackle a range of challenges for<br />

people with neurological conditions.<br />

The riders raised more than<br />

$280,000 and it was inspiring to<br />

see people of all ages and abilities<br />

enjoying the day.<br />

You can read about the incredible<br />

Jason Potter who cycled from<br />

Sydney to Perth and concluded his<br />

epic adventure at our Ocean Ride! I<br />

did the 30km and it hurt enough, so<br />

I truly applaud Jason for doing it for<br />

so many days and at a considerably<br />

greater distance.<br />

Lastly, you may have noticed a fresh<br />

new look for this publication and for<br />

MSWA more broadly. Our ‘Life not<br />

limits’ campaign puts the focus back<br />

on the people who matter the most<br />

to us – Western Australians living with<br />

neurological conditions. You’ll get<br />

to meet Chris McEncroe, our Thrill<br />

Seeker, and Susan Finlay, our Social<br />

Butterfly, who proudly feature in our<br />

new adverts. We are very excited<br />

about sharing the inspirational<br />

stories of our community in this<br />

<strong>Bulletin</strong> and over the coming months.<br />

It wouldn’t be a December<br />

publication without some mention<br />

of festive celebrations. This year our<br />

team at Butler have worked with the<br />

local community to launch our first<br />

ever Outreach Christmas Market<br />

on 14 December, featuring creative<br />

workshops, gift stalls and much<br />

more. It was also a great chance<br />

to meet the Butler team and tour<br />

the impressive facilities. We look<br />

forward to engaging with our Clients<br />

and community to do much more of<br />

this type of engagement.<br />

I hope you all get time off to relax<br />

and enjoy this season with your<br />

family and loved ones. I know our<br />

team at MSWA is looking forward to<br />

a break (or at least a slower pace),<br />

some good food and fun.<br />

Wishing you all a happy festive<br />

period and a peaceful New Year.<br />

Thank you once again for your<br />

unfailing support and collaboration<br />

as we focus on Life – not limits.<br />

Melanie Kiely<br />

Celebrating at the finish line of the 20<strong>23</strong> Ocean Ride.<br />

Melanie with Social Butterfly Susan<br />

Finlay for the live draw on Channel 7.<br />

Announcing the PLATYPUS clinical<br />

trial at the Progress in<br />

MS Research Conference.<br />

MSWA CEO<br />

4 5


Member & Client Services<br />

Welcome to the <strong>Birak</strong> / <strong>First</strong><br />

<strong>Summer</strong> edition of our Member &<br />

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

As featured on our front page,<br />

MSWA Clients Chris McEncroe and<br />

Susan Finlay have shared with us,<br />

and now the world, their uplifting<br />

stories of lives well lived for our<br />

refreshed brand campaign. This new<br />

era of MSWA is all about putting our<br />

Clients at the centre of all that we do,<br />

and showing that every life is about<br />

so much more than a diagnosis. We<br />

can’t wait to see what other amazing<br />

Client stories we can share through<br />

Life not limits.<br />

NDIS News<br />

On Friday 3 November, Co-Chairs<br />

of the NDIS Review Panel, Professor<br />

Bruce Bonyhady AM and Ms<br />

Lisa Paul AO PSM, presented an<br />

independent Report to disability<br />

ministers and discussed the<br />

Review’s recommendations.<br />

Ministers discussed key challenges<br />

currently facing the NDIS that have<br />

been identified by the Review’s<br />

What we have heard report released<br />

in June, including:<br />

• Participant numbers and NDIS<br />

costs are higher and growing at a<br />

faster rate than projected by the<br />

Productivity Commission in 2017.<br />

• Further detailed design and<br />

implementation of any changes<br />

to the NDIS needs to continue<br />

with the engagement and<br />

trust created through<br />

deep engagement of the<br />

Independent Review.<br />

• The NDIS exists in an ecosystem<br />

of disability support that must<br />

be unified.<br />

Newsflash:<br />

Since time of writing, the NDIS has released<br />

their Final Report with 26 recommendations<br />

and 139 actions to the public. You can access<br />

the full report and easy-to-read guide here:<br />

• The NDIS participant pathway<br />

has unclear criteria for<br />

reasonable and necessary<br />

supports, which create<br />

complexity, stress, inconsistency<br />

and mistrust.<br />

• Ineffective market stewardship<br />

and regulation has led to service<br />

gaps, poor quality supports and<br />

opened the door to exploitation.<br />

• Participants have limited choice<br />

over where, how and with whom<br />

they live, and NDIS Supported<br />

Independent Living decisions are<br />

inconsistent.<br />

• Complexity of local area<br />

coordinators (LACs), support<br />

coordination, plan management<br />

and community connectors<br />

are expensive barriers to<br />

participants accessing supports.<br />

You can read more information<br />

regarding the report through the<br />

Disability Reform Ministerial Council<br />

Meeting Communique.<br />

Get up to PACE<br />

The NDIA are in the process of<br />

implementing their new software<br />

system ‘PACE’. This is being rolled<br />

out over the next 18 months, but<br />

it will mean some changes. Geoff<br />

Hutchinson has provided a detailed<br />

review on page 8 with what you<br />

need to know about ‘PACE’ and what<br />

changes to expect.<br />

Around MSWA<br />

On Tuesday, 14 November our<br />

Outreach Team held a presentation<br />

for our Clients who won prizes for<br />

their artwork at the Canning Show<br />

exhibition held earlier in the year. The<br />

talent of some of our Clients is truly<br />

outstanding, well done to everyone.<br />

And so on to Christmas. Yes, we are<br />

already there!<br />

<strong>First</strong>ly, our Client and Volunteer<br />

Christmas party that is held every<br />

year and is such a fantastic event,<br />

with another fun day filled with<br />

entertainment, wonderful food and<br />

lots of singing.<br />

We also held our first Christmas<br />

Market at our Butler Centre on 14<br />

December. This was an opportunity<br />

to take a tour of our service centre<br />

and residential accommodation,<br />

while enjoying wonderful food,<br />

entertainment and shop the handcrafted<br />

stalls.<br />

Check out the full gallery from both<br />

of these wonderful events using the<br />

QR codes on the right-hand side.<br />

Our Client Advisory and Co-Design<br />

Committee is now well established<br />

and we are getting valuable<br />

feedback on what we need to focus<br />

on across our supports and service<br />

delivery. Congratulations to Gavin<br />

Harper who was voted in as Deputy<br />

Chair for the Committee.<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 at<br />

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

Nicki Washington<br />

CHIEF CLIENT<br />

OPERATIONS OFFICER<br />

Christmas Market<br />

Client and Volunteer<br />

Christmas Party<br />

6 7


Client Engagement<br />

Can you keep pace<br />

with PACE?<br />

When a historical saying remains<br />

relevant for centuries, there's no<br />

doubt it's timeless truth. Greek<br />

philosopher Heraclitus (born<br />

so long ago that both Aristotle<br />

and Plato considered him old!) is<br />

credited with one of the truest<br />

sayings - "Change is the only<br />

constant in life." How does this<br />

relate to MSWA, you ask? Well,<br />

because one thing we've learnt<br />

over the years when we're talking<br />

about the NDIS, is that change is<br />

consistently constant.<br />

The latest change in the lives of<br />

participants and providers alike is<br />

the introduction of PACE. PACE is<br />

the National Disability Insurance<br />

Agency’s (NDIA) new business<br />

management software, built to<br />

replace the current Services<br />

Australia platform used for the past<br />

five years. If your eyes start glazing<br />

over when people start talking<br />

about Client relationship platforms,<br />

I don’t blame you. However, PACE<br />

is something everyone should be<br />

across because the changes it<br />

brings with it will impact the way<br />

NDIS plans are managed and paid.<br />

According to the NDIA, PACE is<br />

the outcome of its ‘Participant,<br />

Platform, and Process’ initiative<br />

to streamline and enhance the<br />

participant experience within the<br />

scheme. This ‘enhancement’ will<br />

be through greater transparency<br />

across transactions for both Clients<br />

and providers, real-time information<br />

and centralised portals which will<br />

make invoicing and claims more<br />

straightforward.<br />

Other stated benefits of PACE<br />

include faster management of<br />

service payments and greater<br />

transparency in interactions, which<br />

will ensure both participants and<br />

providers have access to up-todate<br />

information, thus streamlining<br />

processes minimising delays and<br />

simplifying financial management.<br />

Of course, to bring about these<br />

improvements, there will be some<br />

changes to the process. One of the<br />

most significant changes is the<br />

introduction of a system called ‘My<br />

Provider’, which asks participants<br />

to endorse a provider (usually<br />

done at Planning Meetings) which<br />

will allow claims to be fast-tracked<br />

and paid within two to three days.<br />

When a provider is not endorsed,<br />

participants will receive a text<br />

message from the NDIA after each<br />

claim asking them to confirm the<br />

payment, with the whole process<br />

taking about 10 days. Critically,<br />

the ‘My Provider’ requirement only<br />

applies to agency-managed funds.<br />

This means that if you are self or<br />

plan managed the ‘My Provider’<br />

changes will not affect you at this<br />

the time.<br />

Additionally, PACE will also bring<br />

changes to some of the support<br />

categories used to allocate funding<br />

within your plans (i.e., Core, Capacity<br />

Building, and Capital budgets) and<br />

have added one new support type<br />

called ‘Recurring’ which so far only<br />

has ‘recurring transport’ available.<br />

Again, these changes are more<br />

terminology and should not impact<br />

your day-to-day service delivery.<br />

One final change will be the new<br />

annual ‘Participant Check-ins’. In<br />

theory, participants will be called<br />

by an NDIA representative to check<br />

on their well-being, discuss whether<br />

there have been any changes to<br />

their support needs or goals, and<br />

find out whether their current<br />

NDIS plan is meeting their needs.<br />

The outcome of this conversation<br />

determines whether they will<br />

then receive a slight variation or<br />

complete reassessment. The good<br />

news is these check-ins (especially<br />

for those whose plan is working well)<br />

will mean the plan roll-over process<br />

should be quicker and reduce the<br />

time required for the planning<br />

process.<br />

Finally, while nothing is confirmed,<br />

and as discussed above change<br />

is constant, the information we’re<br />

getting from the NDIA is that longer<br />

(five-year) or lifetime plans may be<br />

coming.<br />

But don't worry, because despite<br />

all these changes, there are some<br />

important things that are staying the<br />

same, including (and very crucially)<br />

the fundamental structure of your<br />

NDIS plan. You will still receive<br />

funding to purchase reasonable<br />

and necessary support to help<br />

your day-to-day activities. Also, the<br />

support you are receiving now is<br />

still available, which means your<br />

services won’t change in a new<br />

PACE world. So, while PACE will<br />

be different, it shouldn’t be that<br />

different once your plan is set<br />

up properly.<br />

The other good news is that<br />

this won’t be happening all at<br />

once. Following feedback from<br />

participants and providers, the<br />

rollout, which started in October,<br />

will take place over 18-months and<br />

the full national transfers of existing<br />

participants will commence in<br />

February next year. So, we’ve all got<br />

some time to learn how the new<br />

system works before the old one<br />

disappears for good. You can find<br />

out if you’re on PACE during your<br />

next plan reassessment or your next<br />

planning meeting.<br />

So, as our good friend Heraclitus<br />

has taught us, change will continue<br />

to happen, and we know this is<br />

exactly what happens within the<br />

NDIS world. Having been around<br />

the NDIS for some time now, I<br />

understand that some of these<br />

changes will be good, some less<br />

good and some will come by without<br />

anyone noticing. My read is that<br />

PACE will be noticed briefly, before<br />

becoming ‘just the way we do things’.<br />

Whatever the outcome, MSWA will<br />

keep our eye on all things PACE and<br />

will keep providing you with as much<br />

information as possible as these<br />

changes come to our attention.<br />

Geoff Hutchinson<br />

MANAGER CLIENT ENGAGEMENT<br />

8 9


Introducing…<br />

Life not limits<br />

After a massive year of consultation,<br />

meticulous planning, market testing,<br />

creative development and listening<br />

to our Clients, we are so proud<br />

to present MSWA's brand new<br />

platform: Life not limits.<br />

Chief Marketing Officer Tony Millar<br />

said the mission was to transform<br />

the way people perceive MSWA,<br />

from a brand that ‘runs a lottery’<br />

back to our core purpose, a charity<br />

dedicated to supporting West<br />

Aussies with neurological conditions<br />

to live their version of best.<br />

“The Mega Home Lottery is a big<br />

part of our organisation’s history,<br />

but we need to broaden that<br />

understanding,” he said.<br />

“This includes switching the spotlight<br />

to our core purpose and why we<br />

truly exist. The most authentic way<br />

of doing that is through telling real<br />

stories with real people.<br />

“It was a privilege to tell the<br />

authentic stories of Thrill Seeker,<br />

Chris, and Social Butterfly, Susan,<br />

who truly embody the concept of<br />

‘Life not limits’.<br />

Thank you to Susan and Chris for<br />

granting us the privilege of telling<br />

your stories, we had plenty of fun<br />

both pool and trackside, and hope<br />

you are as proud of the results<br />

as we are.<br />

It was especially heartwarming to<br />

see Chris’ karting community go out<br />

of their way to support him on our<br />

shoot days – because being on the<br />

track on your own just isn’t the same!<br />

Well done to the Bunbury City Kart<br />

Club for their unwavering support<br />

of Chris, including our six racers who<br />

took time out of their schedules to<br />

appear alongside him in our<br />

film shoot!<br />

We also loved seeing our MSWA<br />

staff members in the spotlight,<br />

a big thank you to Kim Jahnig, Pip<br />

Johnson and John Ryan for their<br />

starring roles, as well as Hawa<br />

Jalloh and James Beckett for their<br />

hard work behind the scenes to<br />

make it happen.<br />

We truly appreciate all of our Clients<br />

who participated in our consultation<br />

interviews, focus groups and<br />

surveys to help shape this new<br />

campaign.<br />

We can’t wait to share even more<br />

stories in 2024 – and would love<br />

to hear yours! Send an email to<br />

marketing@mswa.org.au and tell us<br />

how you focus on life, not limits.<br />

We hope you enjoy our fresh new<br />

look, colour palette and graphics –<br />

of which Susan and Chris had the<br />

opportunity to design their very own<br />

(take a closer look at the animation<br />

on our new ads!).<br />

Meet our Thrill Seeker, Chris<br />

Meet our Social Butterfly, Susan, featuring another<br />

amazing Client and friend Christine Wilder.<br />

The Mega Home Lottery goes live on Channel 7!<br />

For the first time ever, the winner of the Mega Home Lottery Grand Prize<br />

Package was announced live to air on Channel 7 news on 13 November,<br />

coinciding with our brand new ads going to air for the first time!<br />

There was plenty of excitement building to this huge<br />

moment, with Clients and staff from across MSWA<br />

invited to the City Beach home to help celebrate.<br />

See the amazing moment our 20<strong>23</strong>B MHL winner<br />

Sophie had her life changed forever, here.<br />

Chris' track mates Adam, Cody and Jamie responded to the call out for<br />

support to appear in our film shoot by his side.<br />

“We are hugely excited about the<br />

next phase of our brand evolution,<br />

and we are sure that ‘Life not<br />

limits’ will set MSWA up for future<br />

sustainability and success.”<br />

Perth bridges light up red<br />

The iconic Matagarup bridge, as well<br />

as a host of other bridges across<br />

Perth, shone brightly in MSWA red on<br />

Sunday, 12 November, in recognition<br />

of the MSWA Ocean Ride and<br />

MSWA's brand refresh!<br />

10 11


Research<br />

Dietetics<br />

Hope for Australians battling<br />

Progressive Multiple Sclerosis<br />

Feeling fatigued?<br />

Here’s how your diet can help<br />

In a monumental stride towards<br />

combating primary progressive<br />

multiple sclerosis (PPMS), a<br />

pioneering clinical trial named<br />

PLATYPUS was unveiled at the MS<br />

Australia Progress in Research<br />

Conference in Perth on November 29.<br />

The $4 million initiative, the first of<br />

its kind in Australia, aims to reverse<br />

neurological damage associated<br />

with PPMS, providing a beacon of<br />

hope for those living with this severe<br />

form of multiple sclerosis.<br />

Distinguished by its innovative<br />

multi-arm, multi-stage (MAMS)<br />

adaptive design, PLATYPUS takes<br />

a revolutionary approach to<br />

accelerate the testing of potential<br />

treatments.<br />

The flexible nature of this<br />

design enables researchers to<br />

simultaneously explore the efficacy<br />

of various existing medications.<br />

Unpromising treatment arms can<br />

be dropped, and new treatments<br />

introduced, expediting the trial process<br />

compared to traditional methods.<br />

CEO Melanie Kiely expressed MSWA's<br />

pride in contributing $3 million to this<br />

transformative research project, with<br />

its potential to redefine the landscape<br />

of PPMS treatment.<br />

“PLATYPUS has the potential to<br />

deliver a significant breakthrough,<br />

as we aim to provide real-life<br />

outcomes which positively impact<br />

the lives of people living with PPMS<br />

– which is always our focus," she<br />

said. “By testing two repurposed<br />

drugs, we hope to find a treatment<br />

which can be quick to market for the<br />

people we support.”<br />

MS Australia CEO Rohan Greenland<br />

hailed the announcement as a<br />

major milestone for the 13,000<br />

people living with PPMS in Australia,<br />

addressing a critical unmet need in<br />

the MS landscape.<br />

Neurology Professor Simon<br />

Broadley from Griffith University’s<br />

School of Medicine and Dentistry<br />

explained PLATYPUS was an<br />

extension of the Optimal Clinical<br />

Trials Platform for Multiple Sclerosis<br />

(OCTOPUS) clinical trial, funded by<br />

the UK MS Society and launched in<br />

April 20<strong>23</strong>.<br />

Collaborating with OCTOPUS<br />

partners in the UK, the trial will<br />

examine the potential of drugs like<br />

metformin, typically used for type<br />

2 diabetes, and alpha-lipoic acid,<br />

a health food supplement, both<br />

showing promise in promoting<br />

remyelination and/or repairing<br />

myelin in MS.<br />

MSWA Chair Horst Bemmerl said<br />

the unique approach of PLATYPUS<br />

gave him hope for faster treatment<br />

options.<br />

“People living with MS, like myself,<br />

often say ‘a cure won’t happen in my<br />

lifetime’ due to the time required to<br />

bring new medications to market,”<br />

he said.<br />

"PLATYPUS is different, as it’s using<br />

existing medications that have<br />

shown potential in treating PPMS.<br />

Because they have already been<br />

tested, they can be fast-tracked.”<br />

He further commended Australia for<br />

joining the OCTOPUS program ahead<br />

of other major players across the<br />

globe, terming it a groundbreaking<br />

move improving the chance of<br />

delivering effective results.<br />

The PLATYPUS trial, set to involve<br />

collaboration among 20 academic<br />

and healthcare institutions, aims<br />

to recruit over 250 participants in<br />

Australia.<br />

Once available, the MS Australia<br />

and MSWA websites will have the<br />

information you need to progress<br />

your interest in the trial. Also, keep<br />

an eye on social media posts from<br />

both MS Australia and MSWA during<br />

2024 for the latest updates.<br />

For many people with multiple sclerosis (MS) and other<br />

neurological conditions, fatigue can have a significant<br />

impact on day-to-day life, impacting energy levels for<br />

work, socialising or engaging in activities they enjoy.<br />

This can be heightened in the summer months when we<br />

have long, hot days.<br />

Fatigue can result from inflammation and immune<br />

responses, or from other factors such as medications,<br />

poor sleep, low mood and diet.<br />

There is a growing body of evidence which shows us<br />

that improved overall diet quality can help to improve<br />

fatigue symptoms. But what specifically helps to improve<br />

diet quality?<br />

A good quality diet includes plenty of fruits and<br />

vegetables, wholegrains, lean protein and healthy fats. It<br />

also has lower amounts of highly processed foods such<br />

as pre-made cakes, pies, biscuits and processed meats<br />

such as sausages and bacon – but that doesn’t mean we<br />

need to avoid these all together.<br />

Here are some practical ways you can improve your diet quality and help manage your fatigue:<br />

Include complex carbohydrates.<br />

These release energy into the body more<br />

slowly and give longer-lasting energy<br />

across the day. Complex carbohydrates<br />

include wholegrain breads and cereals,<br />

rolled oats, brown or basmati rice and<br />

wholegrain pastas.<br />

Include lean protein.<br />

This helps to support strength and<br />

immunity, as well as provide energy<br />

and help you feel satisfied from a meal.<br />

This could include lean chicken or meat,<br />

fish, lentils, chickpeas, tofu or dairy<br />

products such as yoghurt, milk<br />

or cheese.<br />

Eat the rainbow.<br />

Choose a range of different coloured<br />

fruits, vegetables, nuts and seeds to get<br />

a range of fibre, vitamins and minerals.<br />

This will provide longer lasting energy<br />

and support improved gut health.<br />

Rest when you need to.<br />

It is important for the body to rest when<br />

it needs to, so see if you can schedule<br />

rest time into your day. Consider stress<br />

management strategies such as<br />

meditation, exercise or light movement.<br />

Consider meal size and timing.<br />

Large portion sizes will mean the body<br />

uses more energy to break down and<br />

digest a meal, which can worsen fatigue<br />

symptoms. Eating smaller, more regular<br />

meals and snacks can help you gain energy and nutrition,<br />

without being too fatigued from digestion. You may plan<br />

more substantial meals at times when your energy is higher.<br />

Limit large amounts of processed foods.<br />

Highly processed foods and drinks like<br />

cakes, biscuits, processed meats, pies,<br />

sausage rolls and soft drinks are often low<br />

in nutrition and high in calories, sugars and<br />

saturated fats (which we aim to limit in our<br />

diet). They can cause our energy to peak<br />

and drop quickly in the day.<br />

Stay hydrated.<br />

Drinking plenty of water will help to<br />

alleviate fatigue symptoms.<br />

Enjoying a healthy, good quality diet can help improve<br />

your overall health and wellbeing, as well as support<br />

fatigue management. If you are interested in looking at<br />

your diet, our MSWA dietitians can provide individual<br />

advice and support to help you.<br />

Hannah Papendorf<br />

MSWA DIETITIAN<br />

12 13


Occupational Therapy<br />

Margaret Cable:<br />

Back to the Bush!<br />

Beach Access Guide<br />

In Western Australia, we are truly blessed when it comes to the natural<br />

environment we are surrounded by, and sometimes take for granted. From<br />

the bush to the beach, there is so much to explore – especially during the<br />

long summer days ahead of us.<br />

After three long years, Margaret Cable is back to<br />

doing what she loves – ‘going bush’ to photograph the<br />

wildflowers and spend time in nature.<br />

And there is plenty of it around her property in Toodyay,<br />

where her previous “townie” wheelchair couldn’t quite<br />

handle the terrain.<br />

Seeing how this had impacted Margaret’s quality of<br />

life, her Occupational Therapist Michaela Van Zuylen<br />

advocated on her behalf to the NDIS for chair that would<br />

help Margaret live the life she wanted.<br />

“She was finding that her old chair got her most places<br />

that she needed to go, but where she really wanted to go<br />

was the off-road trails where she used to go bush walking<br />

with her dog, Smudge,” Michaela said.<br />

“She would say to me ‘no, it’s great’ and that it was giving<br />

her a lot of freedom, but it just wasn’t – she was really<br />

missing those trails.”<br />

Determined to help Margaret get back out there,<br />

Michaela contacted Wild West Wheelchairs to find the<br />

best off-road chair option. After some trials, the AllTrack<br />

was the perfect fit and Michaela set about applying to<br />

the NDIS to make it happen.<br />

Although it took almost a year of work to get it to<br />

Margaret, the pay off was all worth it.<br />

“It's very rewarding, seeing the smile on her face when it<br />

arrived – she was just grinning from ear to ear the whole<br />

time. It was amazing,” Michaela said.<br />

“Margaret and her husband also purchased a small<br />

motorbike trailer so they can go to other trails in the area<br />

– the plan is to explore and go places she couldn’t go<br />

previously.”<br />

Margaret said the new powered wheelchair had made<br />

not only a huge impact on her life, but 7-year-old Smudge<br />

the dog’s life as well.<br />

“It’s just opened up so much choice for him to go walking,<br />

the first day we went into the neighbor’s property he was<br />

running around, he had his little tongue hanging out and<br />

you could see the joy on his face for going somewhere<br />

different for a change,” she said.<br />

“It’s made a massive impact, not that anyone would ever<br />

think, on the dog’s life, as well as my life.<br />

“I wanted to go into the forest to take pictures of the<br />

wildflowers and the orchids when they came out and that<br />

was the number one reason – and now I’ve already put<br />

100kms distance on it!”<br />

Margaret said she didn’t think it would be possible to<br />

get a new chair, but thanked Michaela and the NDIS for<br />

making her dream a reality. In her own words, “the lady<br />

done good!”.<br />

“I get a few looks and people telling me I am pretty lucky<br />

to have the chair, but it’s like ‘you don’t have to tell me, I<br />

know!’,” Margaret said.<br />

“I did say to Michaela<br />

to thank the NDIS for<br />

providing it to me, because<br />

it does mean so much<br />

to me.<br />

“And now the neighbor has<br />

cleared the firebreak, so<br />

now it’s like a grand prix<br />

circuit – I’m off!”<br />

See Margaret in action!<br />

And as Margaret has shown us in her story, using a wheelchair shouldn’t be a<br />

barrier to enjoying the great outdoors or our lovely coastline on those hot days!<br />

MSWA Occupational Therapist Michaela Van Zuylen has put together this<br />

useful guide, from beach wheelchair and walker hire to accessible trails, so<br />

you can start planning your summertime adventures.<br />

Find your local accessiblebeaches.com/beach-directory<br />

The Accessible Beaches website has a search function to help you find which beaches have public access<br />

wheelchairs, matting, accessible bathrooms, hoists and other important information when planning a beach day.<br />

Find the right equipment<br />

There are a few beach wheelchairs and walkers which can be booked on spacetoco:<br />

• www.spacetoco.com/space/fremantle-wa-beach-wheelchair-leighton-beach<br />

• www.spacetoco.com/space/push-beach-walker-leighton-beach-north-fremantle-wa<br />

• www.spacetoco.com/space/city-beach-wa-sandcruiser-beach-wheelchair<br />

• www.spacetoco.com/space/sandcruiser-beach-wheelchair-bathers-beach-shipwrecks-museum<br />

Other equipment can be booked through your local council’s website.<br />

Time to change<br />

This website is a directory of where to find changing places – these are specific disability change rooms for<br />

people who require a hoist for transfer, change table, wheelchair accessible shower and toilet.<br />

On Accessible Beaches I found two locations which also offer free loan beach wheelchairs and changing places<br />

for people who need hoist transfers:<br />

• accessiblebeaches.com/beach-directory/abc-beach-template-6r9we Sorrento Beach<br />

• accessiblebeaches.com/beach-directory/abc-beach-template-dmscc Koombana Beach (Bunbury)<br />

Time to hit the trails www.alltrails.com/australia/western-australia/perth--2/ada<br />

Website AllTrails has a list of wheelchair friendly trails across Perth, with hand-curated trail maps, driving<br />

directions and detailed reviews from fellow nature lovers – so you know exactly what to expect.<br />

Ready for more? breaktheboundary.com.au/<br />

Break the Boundary is a volunteer organisation that runs off-road cycling and hiking opportunities for people<br />

with physical and neurological conditions. From multi-day camps to individual clinics and social group rides, the<br />

team helps people connect with the outdoors and experience areas thought to be inaccessible.<br />

Remember to reach out to your occupational therapist if you need help going off-road this summer. As well as<br />

helping you to locate which beach or trail has the accessibility features you require, they can also assist you with<br />

booking out the equipment and determine accessible changing places.<br />

Happy adventuring!<br />

14 15


Nursing<br />

Water, life, the universe<br />

and everything! – Part 5<br />

Constipation has<br />

many possible causes,<br />

including:<br />

Not eating enough fibre.<br />

Foods high in fibre include fruit,<br />

vegetables, high-fibre bread and<br />

cereals, nuts, seeds and legumes.<br />

How hydration impacts<br />

continence and bowel care<br />

We’re often told we should drink two, maybe even as<br />

much as three litres of water a day for our health. But is<br />

that right?<br />

The reality is, there is one simple rule that all health<br />

authorities, including Kidney Health Australia, agree on;<br />

drink to satisfy your thirst – no more, no less.<br />

So how much should we drink? It’s a simple case of<br />

arithmetic; we need to take in enough to make up for the<br />

amount we lose each day, which is around two litres (1.5<br />

litres as urine and 0.5 litres as perspiration and water<br />

vapour).<br />

We consume about one litre of water through our food<br />

(based on a normal diet of fruit, vegetables, cereal etc.),<br />

so that leaves only about one litre to make up – roughly<br />

six small glasses.<br />

There are exceptions; you need to drink more on hot days<br />

or when exercising, but even then, you should still be<br />

making about 1.5 litres of urine a day.<br />

Another way to tell if you’re drinking enough is to check<br />

the colour of your urine, which should be pale lemon<br />

coloured.<br />

How the bladder works<br />

The bladder is a storage organ that sits in your pelvis.<br />

Urine is made by your kidneys and stored in the bladder<br />

until you are ready to pass urine. When you pass urine,<br />

the bladder outlet muscles (urethral sphincter and<br />

pelvic floor muscles) relax and your bladder contracts<br />

to push the urine out. Your brain controls your bladder<br />

(consciously and sub-consciously) when it is time to<br />

empty. So, for most of the day, your brain is sending<br />

messages for you to hold on and not empty your bladder<br />

– and most of the time you do not even realise.<br />

A normal bladder<br />

• Empties 4–6 times each day.<br />

• Can hold up to 400–600 ml of urine, but usually feels<br />

quite full at about half this amount (200–300 ml).<br />

• May wake you up once at night to pass urine.<br />

• Tells you when it is full, but gives you enough time to<br />

find a toilet.<br />

• Empties completely each time you pass urine.<br />

• Does not leak urine (incontinence).<br />

• Does not need you to push or strain to pass urine.<br />

• Empties easily and without any pain.<br />

How the bowel works<br />

Digestion of food occurs in the stomach and small bowel.<br />

The small bowel takes the nourishment your body needs<br />

from what you eat. The remaining waste forms bowel<br />

motions (faeces). Faeces enter the large bowel (large<br />

intestines or colon) as liquid. The large bowel absorbs<br />

water back into the body and faeces become more solid.<br />

When faeces reach the lower part of the large bowel<br />

(rectum), you feel fullness in your rectum (back passage),<br />

or the urge to pass a motion (defecation).<br />

Rochelle Brown<br />

MSWA NEUROLOGICAL LIAISON NURSE<br />

A normal bowel<br />

• Passes bowel motions anywhere from three times<br />

a day, to once every three days. The normal pattern<br />

for passing bowel motions varies greatly from person<br />

to person.<br />

• Doesn’t need you to strain excessively, but allows the<br />

bowel motion to be passed easily and without pain.<br />

• Tells you when it is full but gives you enough time to<br />

get to the toilet.<br />

• Empties the lower bowel completely each time you<br />

pass a bowel motion.<br />

• Doesn’t leak faeces (formed or liquid/ diarrhoea) or<br />

gas (wind or flatus).<br />

Constipation<br />

Constipation is the difficulty of passing a bowel motion<br />

that may be very hard. With constipation, bowel motions<br />

are often passed less than three times a week. You often<br />

have the feeling that you have not completely emptied<br />

your rectum (back passage) after you have passed a<br />

bowel motion.<br />

Constipation is upsetting because it can make you feel<br />

uncomfortable and bloated, as if your rectum is never<br />

completely empty. It can cause haemorrhoids and anal<br />

fissures (tears with bleeding in the anus) by the constant<br />

need to strain to pass a bowel motion.<br />

Straining can also increase the risk of you developing<br />

a rectal prolapse (sagging of the rectum out of the<br />

anus). Severe constipation or faecal impaction are by<br />

far the most common causes of bowel leakage (faecal<br />

incontinence), especially in the elderly population.<br />

Hard bowel motions are difficult to pass and may cause<br />

a partial blockage in the lower bowel, resulting in watery<br />

faeces flowing around the constipated stool without<br />

warning. This may be mistaken for diarrhoea.<br />

Not drinking enough fluid.<br />

Fibre and fluid work together<br />

to keep bowel motions regular.<br />

Without enough fluid, bowel<br />

motions may become dry and<br />

difficult to pass.<br />

Not exercising enough<br />

or reduced general activity level.<br />

The side effects of some<br />

medicines. Such as painkillers<br />

or iron tablets.<br />

Not being able to go to the toilet<br />

because of poor mobility or<br />

problems with standing, walking<br />

and sitting.<br />

Some diseases of the nervous<br />

system such as Parkinson’s<br />

Disease and Multiple Sclerosis.<br />

Some bowel problems.<br />

Such as haemorrhoids, irritable<br />

bowel syndrome, or diverticulitis.<br />

Anorectal pain (pain to the<br />

anus and the rectum) caused by<br />

haemorrhoids, fissures, surgery or<br />

birth trauma.<br />

A slow transit bowel.<br />

This may be due to nerve damage<br />

as a result of a stroke, Parkinson’s<br />

Disease, Multiple Sclerosis, spinal<br />

cord injury and trauma.<br />

Poor toilet habits.<br />

Such as not sitting on the toilet<br />

properly, ignoring the urge to go to<br />

the toilet to pass a bowel motion,<br />

rushing when on the toilet and/or<br />

hovering |over the toilet instead<br />

of sitting.<br />

16 17


Counselling<br />

Letting ourselves<br />

off the hook<br />

Looking at mistakes through a<br />

bigger lense<br />

I made a mistake the other day. Okay, so I’ve made<br />

more than one, but this one seemed to carry a lot<br />

more weight than the others. It was different.<br />

I believed it was different.<br />

I felt swept up in a storm of thoughts and feelings,<br />

and all I wanted to do was climb into bed and eat<br />

some chocolate.<br />

I find journalling helpful, so instead, I began to write<br />

down what was on my mind. I wrote out my thoughts and<br />

feelings and then began to look at other resources to<br />

see what could help me. It was then something I read just<br />

popped out to me: Mistakes are necessary for growth.<br />

You’re not expected to be perfect. Boom. It hit me.<br />

I had heard this before and had even said something<br />

similar to others, but this spoke directly to my heart.<br />

It was what I needed to hear.<br />

Suddenly, my perspective changed. I wasn’t meant to be<br />

‘perfect’ and get it right all the time. Instead, I was offered<br />

compassion, understanding and comfort.<br />

My storm calmed further, and my feelings changed to<br />

that of comfort, encouragement and even compassion<br />

for myself. I no longer wanted to hide from the world, I<br />

felt encouraged to go out and make new mistakes. In a<br />

sense, I let myself off the hook.<br />

The way that we think influences our feelings and<br />

actions; and vice versa. This is the premise of an umbrella<br />

of therapies called Cognitive Behaviour Therapy (CBT).<br />

It also recognises that there a patterns of thinking that<br />

we as humans have to some degree or other, which are<br />

often irrational. Often called ‘unhelpful thinking styles’,<br />

or ‘cognitive distortions’ in an extreme form, they can<br />

have a big impact on our mood and thus, how we react<br />

or respond. When we make a mistake and we experience<br />

intense emotions, it could be that we are viewing the<br />

situation and ‘mistake’ through a lens which incorporates<br />

one or more of these unhelpful patterns of thinking.<br />

So how can we widen our lens? Pausing and asking<br />

ourselves questions that can help us gather more<br />

information can give us a ‘bigger picture’ of the situation.<br />

Below are some common unhelpful thinking styles and some helpful reflective questions to ask:<br />

All or nothing thinking.<br />

Seeing one extreme or the other. It is either ‘good or<br />

bad’. ‘I never do anything right’.<br />

Questions: Am I being ‘extreme or rigid’?<br />

Is there any grey 'area' that I might be missing?<br />

Mental Filtering.<br />

Filtering in and filtering out so that the focus is only<br />

on one part of the situation.<br />

Question: What else might I be ignoring?<br />

Catastrophising.<br />

Where we view the situation as the worst possible<br />

scenario. We ‘blow things out of proportion’.<br />

Question: What are some other possible outcomes?<br />

Jumping to conclusions.<br />

We assume we know what another is thinking and<br />

we make predictions based on this. ‘She probably<br />

doesn’t want to have coffee with me because she<br />

thinks I am boring’.<br />

Questions: What are some other reasons for this?<br />

Do I know this for certain?<br />

Personalising.<br />

Taking responsibility or blaming yourself for<br />

everything that goes wrong.<br />

Questions: ‘What other things could have impacted<br />

this outcome?’<br />

Overgeneralising.<br />

Taking one or a few instances and assigning it to<br />

others e.g. ‘You always...’ or ‘Everyone…’<br />

Questions: Does this apply to every situation?<br />

Emotional reasoning.<br />

Where we view or base the situation on our feelings.<br />

‘I feel like I’m a bad friend so I must be.’<br />

Question: How would I view this situation if I<br />

felt differently?<br />

As you read this, I wonder what comes to mind for<br />

you or what has stood out. Are there some mistakes<br />

that you have found hard to let yourself off the<br />

hook for? Or perhaps there have been other<br />

peoples’ mistakes you are finding hard to let go of.<br />

Both are very normal and common experiences<br />

with mistakes.<br />

Pausing and reflecting to become aware of these<br />

thinking patterns might be one way to shift the<br />

perspective. Offering ourselves compassion and<br />

forgiveness for our imperfect humanness can also be a<br />

powerful way to help ‘let ourselves off the hook’.<br />

Like my own revelation – mistakes are necessary for<br />

growth. We are not expected to be perfect.<br />

If you would like someone to support you with this,<br />

speak with your Client Liaison Coordinator or<br />

call 9365 4888 and enquire about our MSWA<br />

counselling services.<br />

Meagan Butler<br />

MSWA COUNSELLOR<br />

18 19


Our People<br />

NDS Awards Recognition<br />

We’ve always known we have a quality team working here<br />

at MSWA, and it is a pretty special moment when this<br />

gets recognised on a national scale.<br />

This was all the more impressive, considering he was up<br />

against entire teams of allied health professionals from<br />

across the country!<br />

Bruce Hale<br />

CARE SUPPORT WORKER<br />

Melanie Cooper<br />

CARE SUPPORT WORKER<br />

Clinical Team Lead and Lymphoedema Physiotherapist<br />

Randall Rooney flew to Melbourne with Physiotherapy<br />

Manager, James Beckett to attend the National<br />

Disability Awards on December 11, where he received<br />

a high commendation in the Excellence in Allied Health<br />

category.<br />

Randall Rooney<br />

CLINICAL LEAD AND LYMPHOEDEMA<br />

PHYSIOTHERAPIST<br />

Dedicated Care Support Workers Bruce Hale and<br />

Melanie Cooper were also nominated and placed on the<br />

‘honour roll’, in the category of Excellence in Disability<br />

Support Work.<br />

Here is what their Clients and colleagues had to say.<br />

Bruce has worked at MSWA’s Hamilton Hill supported<br />

accommodation for 10 years, building a strong<br />

rapport with Clients and always providing consistent,<br />

high-quality care.<br />

His mission is to ensure that residents enjoy the best<br />

quality of life possible, despite the individual challenges<br />

they face, because as he always says, “they deserve it”.<br />

Bruce fulfills any extra tasks the residents’ request.<br />

These tasks range from IT / television problems to<br />

participating in playing games, or just having the time to<br />

listen and converse with the residents.<br />

Melanie provides a consistently high level of care for her<br />

Butler supported accommodation Clients, seeing who<br />

they are as individuals – not defined by the disabilities<br />

they live with.<br />

Melanie is a strong advocate for her Clients. She voices<br />

their concerns ensuring they get the best quality of<br />

service while following up with management and Clients<br />

alike to ensure action is taken.<br />

Melanie has been in the caring industry for more than<br />

20 years, and actively seeks opportunities to expand her<br />

knowledge within the disability sector.<br />

Randall’s outstanding contributions include the<br />

development and implementation of a Lymphoedema<br />

Physiotherapy service at MSWA, after recognising a<br />

need for his Clients.<br />

His excellent clinical abilities, positive attitude and<br />

confidence as a therapist allows him take on Clients<br />

with complex care needs, helping them to overcome<br />

significant challenges and achieve therapy goals.<br />

Client Graham Partridge OAM, who was diagnosed with<br />

Parkinson’s Disease in 2017, and his wife Robyn were<br />

quick to sing Randall praises during the nomination<br />

process.<br />

“Randall is excellent, oh my god he is so good. We<br />

previously went to another provider and have had<br />

physios from different hospitals come over, but Randall is<br />

by far the best,” Robyn said.<br />

“The others were all scared of Graham’s height, because<br />

he is big. Because they were worried he would fall, they<br />

had him sitting down most of the time, taking his blood<br />

pressure. But not Randall.”<br />

Graham said he was most impressed with Randall’s<br />

“dedication to his job and his Clients”.<br />

“His whole demeanor is good, we have a laugh and it<br />

works. I always say to him, ‘where have you got the whip<br />

today?’ and we have a laugh.<br />

“He puts the time in, he knows how to get the best out of<br />

people. He is dedicated, makes you feel at ease.”<br />

He is also known to volunteer his time to stay with<br />

residents on lengthy medical appointments either with<br />

specialists, at GPs or hospital visits so they don’t have to<br />

wait alone.<br />

As well as his care for his Clients, Bruce shows<br />

leadership each day in growing the knowledge and<br />

skillset of his team.<br />

The team is becoming a little worried about Bruce<br />

retiring, because Hamilton Hill does not know how it<br />

would cope without him!<br />

A colleague gave this glowing recommendation for<br />

Bruce:<br />

“Bruce is a gentleman to work with. He treats everyone,<br />

residents and colleagues alike, with utmost respect,<br />

kindness and gentleness.”<br />

“Even though he is brimming with skill, he remains<br />

humble and gracious. He turns his ever present ‘can-do’<br />

attitude into ‘will-do’ and does, making him a highly valued<br />

team member who is most deserving of this esteemed<br />

recognition.”<br />

A certified level two manutention trainer, Melanie acts to<br />

maintain as much Client independence and dignity while<br />

ensuring safety for the Client and staff members alike.<br />

One of Melanie’s Clients, Debra Evans, moved into Butler<br />

five years ago and credits Melanie for making what was a<br />

difficult transition into a smooth one.<br />

“Mel has made that transition of coming to live here really<br />

quite easy. She made me feel a bit more normal, made it<br />

feel more like home,” Debra said.<br />

The qualities she most appreciates in Melanie are her<br />

helpfulness, friendliness and down-to-earth nature.<br />

“My sort of cup of tea! You shouldn’t have your favourites,<br />

but I would say she is mine,” Debra said.<br />

“Mel has a natural ability in making someone feel<br />

accepted, feel normal. She treats you with respect with<br />

dignity and she has made a very difficult transition for<br />

me personally much easier.<br />

“She is very conscientious and caring in what she does,<br />

and she is so genuine. She means the world to me.”<br />

20 21


Community Supporters<br />

Our Stories<br />

Margaret Doody’s Masterpiece<br />

Louise Bruce: Caring by nature<br />

Local artist Liv Robinson Art<br />

dedicated hours of painstaking<br />

work to create a beautiful four<br />

metre underwater-themed mural,<br />

bringing new life to the courtyard of<br />

MSWA's Margaret Doody House.<br />

The respite centre in City Beach<br />

gives our Clients the chance to relax<br />

and reset, while their carers and<br />

family members also take some time<br />

out to rest.<br />

This art project was years in the<br />

making, with Liv visiting Margaret<br />

Doody in September to add the<br />

final flourishes - complete with fans<br />

watching on as she worked.<br />

"It’s always a bonus when your art<br />

can help start a conversation or<br />

inspire some sort of interaction,” Liv<br />

explained.<br />

“That’s the whole point of putting big<br />

pieces out on a wall; to bring people<br />

together, create a community feeling<br />

and have a chance to meet people -<br />

that's the power of art,” Liv said.<br />

Liv’s drive to give back to the<br />

community stems from her own<br />

health-battles she experienced as<br />

a child.<br />

“I spent two years as an inpatient<br />

in a hospital when I was a child, so I<br />

know what it’s like when there is no<br />

art on the wall,” she said.<br />

The project was funded through<br />

a Go-Fund Me page set up by Liv,<br />

to ensure the mural was gifted to<br />

Margaret Doody House.<br />

This piece is particularly unique, as<br />

Liv bought the artwork to Wilson<br />

Outreach for Clients to leave their<br />

own signature mark on the painting.<br />

“That was really important, because<br />

my work is really about empowering<br />

people through the art process, so it<br />

didn’t feel right to just paint it myself<br />

and then put it up on the wall,” Liv said.<br />

“The hour or so I was at the centre,<br />

it was lovely to see everybody get<br />

involved, take an interest or even just<br />

watch on.<br />

“It’s not about whether you think<br />

you have an ability, it’s about letting<br />

yourself get lost in the process<br />

of having fun, playing and getting<br />

creative.<br />

“Get out there – whether it’s<br />

sketching, music, moving or dance<br />

– whatever. Just invite art back into<br />

your life because it is a tool available<br />

to all of us and it is so good for the<br />

mind, the spirit and the soul.”<br />

Michael, who was enjoying a stay<br />

at Margaret Doody House when Liv<br />

came to paint the finishing touches,<br />

said it had transformed the whole<br />

courtyard area.<br />

“It’s amazing – you can’t believe<br />

something like that is just out here<br />

on this wall,” he said.<br />

“With all the difficulties in the world<br />

these days, to have artists and<br />

musicians contributing and putting<br />

up murals like this, it just brings so<br />

much joy to everybody in the world,<br />

and we really need that.”<br />

Thank you Liv, your masterpiece is<br />

so appreciated by our staff and<br />

our Clients.<br />

After 15 years of service to MSWA<br />

and its Clients, Louise Bruce knew<br />

the time was right to say goodbye<br />

– but not until she had served up a<br />

delicious spread for all of Wilson to<br />

remember her by!<br />

“They all loved the food today – I<br />

wanted to do my own catering for<br />

them so they could enjoy something<br />

different,” Louise said.<br />

This selfless desire to put others<br />

first is what has left a lasting impact<br />

on all who met Louise during her<br />

time with MSWA, with almost 100<br />

Clients, fellow volunteers and<br />

staff packing the Wilson atrium to<br />

say goodbye.<br />

Around the room, memories were<br />

shared – and one anecdote from<br />

Teresa Zammit truly defined the<br />

character of Louise: someone who<br />

would give the shirt off their own<br />

back, literally.<br />

Coming to work one day, Teresa<br />

had complimented the top Louise<br />

was wearing. Without a second<br />

thought, Louise had visited the<br />

bathroom, whipped it off and<br />

changed it for another, just so she<br />

could gift it to her .<br />

“That’s just me. If somebody likes it, I<br />

just give it,” Louise said.<br />

Louise first set foot in Wilson to<br />

accompany her husband, who lived<br />

with MS, to his hydrotherapy and<br />

physiotherapy appointments all<br />

those years ago, and her love for the<br />

Clients meant she never left.<br />

“I had a disabled husband and I<br />

looked after my parents with their<br />

illnesses, so that’s why I love caring<br />

for people.<br />

“I started as a volunteer in the<br />

kitchen because I used to bring<br />

my husband here to Wilson, so I<br />

did volunteering while he did his<br />

exercises.<br />

“It’s the members I am so attached<br />

to, they are so lovable. They are<br />

loving and caring even though they<br />

have their own illnesses.”<br />

Louise would always arrive a half an<br />

hour early each day to prepare all<br />

the morning tea for the Clients and<br />

was always one of the last to leave.<br />

“If the members are still here and<br />

there are not many staff around, I’ll<br />

stay back and play games with them<br />

until they get picked up by the taxi.<br />

So if you add up all the hours that I<br />

have given, bloody hell!” she laughed.<br />

“But it has come to the stage where<br />

it’s time for me to go, my arthritis is<br />

playing up otherwise I would have<br />

stayed on. You always know when<br />

the time is right for you.”<br />

Louise will be remembered for her<br />

fantastic culinary skills, smiling face<br />

and of course, her love of singing.<br />

“I put the music on, and I am always<br />

singing – Celine Dion is my favorite,”<br />

she smiled.<br />

Even though Louise has officially<br />

retired, she will be going from one<br />

caring role to another with plans<br />

to help look after her great niece<br />

and her children with her newfound<br />

freedom.<br />

“I love kids, and my family always<br />

comes first,” she said.<br />

As well as babysitting duties,<br />

Louise will have plenty of time to<br />

get creative thanks to a parting gift<br />

of scrapbooking supplies from her<br />

“card ladies”.<br />

From all of us at MSWA, we<br />

thank Louise for her generosity,<br />

selflessness, and years of service.<br />

You will be missed!<br />

“What has kept me here is the<br />

members,” she said.<br />

22 <strong>23</strong>


Social Connections<br />

Outreach/Accommodation<br />

Happenings<br />

Canning Show Exhibition Awards<br />

Wilson Outreach’s talented Clients entered more<br />

than 50 artworks into the 20<strong>23</strong> Canning Show, from<br />

16 different artists. Of the works displayed, there<br />

were 18 winning pieces, two high commendations,<br />

two champion titles (Jasmin Franklin for receiving the<br />

Champion People with Disability Painting/Drawing<br />

Exhibit and Jackie Edwards for the Champion People<br />

with Disability Hobby Ceramics Exhibit) and a coveted<br />

People’s Choice Award winner for Tony Villamagna!<br />

Murder mystery<br />

In celebration of the spooky<br />

season, Rockingham Outreach<br />

enjoyed a murder mystery<br />

themed game! The team went<br />

all out with costumes and<br />

decorations to boot.<br />

Rockingham<br />

beach day<br />

Rockingham Outreach enjoyed<br />

a day by the beach at Bell Park<br />

Reserve, filled with games, good<br />

company and tasty treats.<br />

Albany Outreach<br />

There has been plenty happening<br />

at Albany Outreach over the past<br />

couple of months, celebrating loud<br />

shirt day, an “Aussie” themed BBQ<br />

and galaxy-themed resin workshops.<br />

Melbourne Cup<br />

Wilson Outreach went all out to celebrate spring<br />

carnival, with raffles, sweepstakes, delicious lunch and<br />

fancy hats! A special shout out to Warren Black, who not<br />

only won the sweepstakes but also generously donated<br />

the winnings back to Outreach. He also won best hat on<br />

the day – how’s that for a run of luck!<br />

A refresh for Treendale<br />

It’s been a busy year for our Facilities and Maintenance<br />

Team, who have prioritised upgrade works across a<br />

number of our accommodation and respite facilities.<br />

Treendale Accommodation and Respite experienced<br />

the most significant face lift this year, receiving all new<br />

panelling, painting, flooring and LED lighting throughout.<br />

Treendale Supported Accommodation Coordinator<br />

Paula Kennedy said the changes had brightened the<br />

facility to make it feel new and more spacious.<br />

“We had all the carpet removed and stunning wood look<br />

flooring laid, this makes it cleaner and brighter looking,<br />

easier to keep clean and improved manoeuvrability of<br />

equipment and Clients’ wheelchairs,” she said.<br />

“All the residents have commented how much they<br />

like it. We have had both MSWA employees from other<br />

departments and other visitors comment on how much<br />

they love the changes and how much it seems to have<br />

lifted the spirits of staff and Clients,” Paula said.<br />

“We acknowledge the integral part the Facilities Team<br />

of Steve, Brendan, Brandon and Brendon played in<br />

planning, organising and supervising everything as<br />

well as being there to support the Treendale<br />

Gardens leadership team and staff<br />

with any issues that arose.”<br />

Rummikub champion<br />

crowned for 20<strong>23</strong><br />

Wilson Outreach hosted its annual<br />

rummikub competition, with 10<br />

competitors battling it out for<br />

top spot. This year’s champion<br />

was David Mewburn, with Shane<br />

King taking out second place.<br />

Congratulations!<br />

Butler gets creative<br />

for Halloween<br />

Butler Accommodation also<br />

got into the spooky spirit for<br />

Halloween, decked out wall<br />

to wall in cobwebs and<br />

creepy crawlies!<br />

African drumming<br />

workshop<br />

Our Butler Accommodation staff,<br />

physiotherapists and residents<br />

enjoyed a team building African<br />

drumming workshop in September,<br />

with plenty of laughs had all around<br />

while learning a new skill.<br />

“We have also had some new<br />

furniture to help brighten up the<br />

feel of the place and maintain the<br />

flow of the renovations. Natalie<br />

and Linda and some of the support<br />

workers have also been creative<br />

in respite making it a more homely<br />

atmosphere since the renovations.”<br />

And the work hasn't gone unnoticed by<br />

our most important stakeholders.<br />

24 25


Events<br />

Cross-country adventure<br />

all for ‘mum’<br />

Cycling for a<br />

better future<br />

It was only fitting that everyday<br />

Aussie Jason Potter finished his<br />

4,278km cross-country challenge<br />

in the arms of his mum, Marilyn, at<br />

the MSWA Ocean Ride finish line in<br />

November.<br />

Marilyn, who lives with multiple<br />

sclerosis, was the inspiration<br />

behind the 29-day journey from<br />

Sydney to Perth, with Jason raising<br />

over $22,000 for MS research and<br />

support.<br />

Jason tackled an average of 147km<br />

per day past the Blue Mountains,<br />

across the Great Australian Bight<br />

and down the 90 mile straight to<br />

make it in time for the MSWA Ocean<br />

Ride, with the 120km challenge the<br />

final flourish to end his journey.<br />

“Now to be able to say ‘I’ve ridden<br />

across Australia’ is a bizarre thing,<br />

I’m not a super athletic person by<br />

any stretch of the imagination, so<br />

to achieve that is quite something,"<br />

Jason said.<br />

As well as raising money, Jason was<br />

able to converse with many different<br />

people along the way to raise<br />

awareness for the cause.<br />

“I spoke with some kids in Caiguna,<br />

they had come over to have a chat,<br />

see the bike and to understand what<br />

I was doing. A few days later both of<br />

the boys had donated their pocket<br />

money to the cause,” he said.<br />

“It’s little things like that, that make<br />

you realise there is good in the world.<br />

People do want to help, you just have<br />

to talk about it and give them the<br />

opportunity, and I guess that is what<br />

the ride was all about.<br />

“To donate is a conscious positive<br />

decision you are making for a cause,<br />

and I think that is an amazing thing.”<br />

For Jason, tackling the MSWA<br />

Ocean Ride was an opportunity<br />

to reflect on the culmination of his<br />

journey.<br />

“The emotion built up over the<br />

course of that 120kms,” he said. “I<br />

rode with a few different people on<br />

the way and had a good mate join<br />

me for the last 5kms where I could<br />

thank him for his support.”<br />

“But to come into Whitfords Nodes<br />

and see mum... the relief and the<br />

excitement all molded into one.<br />

“I had thought about that moment<br />

a lot in terms of how I was going to<br />

feel, and it really was special, really<br />

emotional to see mum and the family<br />

there to watch me complete my<br />

journey.”<br />

A dedicated supporter and volunteer<br />

of MSWA’s events, Marilyn was a<br />

proud mum waiting to hand Jason<br />

his medal at the finish line.<br />

“It’s enormous what he has done,”<br />

Marilyn said. “He is just an ordinary<br />

man, but the main thing is all about<br />

raising as much money as he can for<br />

MS research, because he can see<br />

the debilitating effect MS has had<br />

on me.”<br />

“Everyone can do their part to make<br />

a difference. The research they are<br />

doing now in time to come will find<br />

a cure. Even if it is not in my lifetime,<br />

that is my hope.”<br />

There is still time to support Jason<br />

and his fundraising efforts at<br />

Ocean2OceanRide4MS.com.<br />

Congratulations Jason on a journey<br />

of gargantuan proportions!<br />

Watch Jason's Journey<br />

The 14th annual MSWA Ocean<br />

Ride – Powered by Retravision was<br />

a day filled with enthusiasm and<br />

community connection on Sunday,<br />

12 November.<br />

Starting at the scenic Port Beach in<br />

Fremantle and finishing at Whitfords<br />

Nodes Hillarys, the event attracted<br />

more than 1,700 participants,<br />

including <strong>23</strong>6 teams, who embarked<br />

on journeys ranging from 10km to an<br />

impressive 140km!<br />

The collective spirit was truly<br />

heartening, and we are thrilled to<br />

share that the event has already<br />

raised an astounding $288,037, with<br />

the donations still rolling in!<br />

This generous contribution will go a<br />

long way in supporting individuals<br />

in Western Australia living with<br />

neurological conditions.<br />

Introducing Bryan Kennington,<br />

one of our proud ambassadors.<br />

Bryan first heard about MS when<br />

his aunt was diagnosed with the<br />

condition in the early 1980s.<br />

Back then, MS was incredibly<br />

difficult to diagnose. There were no<br />

drugs approved to treat relapses,<br />

and in fact the first drug that proved<br />

effective for treating MS was an<br />

injection, and this wasn't until 1993.<br />

The 20<strong>23</strong> Ocean Ride was Bryan's<br />

11th year in a row cycling for MSWA,<br />

having pushed through the 100km<br />

challenge a few times, but his<br />

average ride over the years has<br />

been 70km.<br />

A special shout-out to Team ROAR,<br />

led by Captain Garry Giles, a<br />

devoted MSWA supporter. Garry's<br />

outstanding efforts earned him the<br />

title of Highest Individual Fundraiser<br />

and Team ROAR the Highest<br />

Fundraising Team, securing an<br />

impressive $11,400 as an individual<br />

and a massive $21,600 as a team.<br />

We extend our sincere gratitude to<br />

everyone who pedaled, volunteered<br />

and showed support on this<br />

memorable day.<br />

In addition, Team Wood claimed the<br />

title of Highest Fundraising Corporate<br />

Team, amassing an incredible $16,669<br />

and counting! Your dedication is truly<br />

making a difference.<br />

As we reflect on the success of<br />

this year, we invite you to mark<br />

your calendars for the 2024 MSWA<br />

Ocean Ride.<br />

Bryan said his commitment to<br />

participate each year is primarily<br />

because the money raised supports<br />

people with neurological conditions,<br />

but also because of the fun of event<br />

day itself.<br />

Bryan plans to ride for many years<br />

to come, and hopes that the money<br />

raised will continue to be contributed<br />

to research and clinical trials to find<br />

better treatments and one day, a cure.<br />

Jeni Donald<br />

MSWA PEOPLE & CULTURE ADVISOR<br />

(AND PROUD PARTNER OF BRYAN!)<br />

Join us in the challenge to ride<br />

and contribute to the real impact<br />

we can make for those living with<br />

neurological conditions. More<br />

details will be released in the coming<br />

months.<br />

Thank you for being a part of this<br />

incredible journey. Relive the magic<br />

of the day through our gallery.<br />

Dannielle McConnell<br />

PROJECT & OPERATIONS<br />

MANAGER - EVENTS<br />

26 27


Fundraising<br />

To find more opportunities<br />

to connect, visit our<br />

website here.<br />

Clients stack up serious stats<br />

in annual Stationary Cycle<br />

Stay Connected<br />

Well, another great Stationary Cycle Challenge!<br />

As part of the 20<strong>23</strong> MSWA Ocean Ride – Powered<br />

by Retravision, we had 217 of our Clients take up the<br />

Stationary Cycle Challenge.<br />

This event runs for an eight-week period leading into the<br />

MSWA Ocean Ride, where we see our MSWA Clients rack<br />

up kilometres as part of their weekly physio sessions.<br />

And boy, did our Clients do some distances on their<br />

chosen piece of gym equipment! As we know, not all our<br />

Clients can make use of the bikes, so if the equipment<br />

counted kilometres, they could choose to use it.<br />

This year’s combined teams total tallied a whopping<br />

7,711.8kms. This is like driving from Exmouth to Adelaide<br />

and back!<br />

We had Clients from:<br />

• Albany, whose kilometres tallied 1,024.10<br />

• Beechboro, whose kilometres tallied 1,402.57<br />

• Rockingham, whose kilometres tallied 1,482.20<br />

• Mandurah, whose kilometres tallied 1,272.73<br />

• Metro Central, whose kilometres tallied 640.29<br />

• Vasse, whose kilometres tallied 367.21<br />

We also had a lone Client from Hamilton Hill whose<br />

distance was untracked.<br />

This year our Butler Client team, whose kilometres<br />

tallied 1,522.70, made a fantastic effort and took out the<br />

bragging rights by a small 40.5kms, just beating out<br />

Rockingham to host the perpetual shield.<br />

Many of our Clients rode hundreds of kilometres, but our<br />

longest distance was from Lovorka from our Beechboro<br />

team with 269.7 kms.<br />

Albany Client John took out the Highest Fundraiser with a<br />

grand total of $850!<br />

Together, all of our Clients should be very proud of<br />

themselves, but this year has seen the introduction of a<br />

Physio’s Choice Award to be given to Clients who have<br />

shone during the Challenge.<br />

Genie, Anne, Anne and Michelle (seated)<br />

from Beechboro<br />

We congratulate all our Physio’s<br />

Choice Award winners below!<br />

John – Albany<br />

Michele – Beechboro<br />

Vicki – Metro Central (Wilson & Kelmscot)<br />

Kate – Bulter<br />

Timothy – Rockingham<br />

Jani – Mandurah<br />

Terry – Vasse<br />

Robert – Hamilton Hill<br />

Trish Watson<br />

EVENTS AND GIVING OFFICER<br />

Peer Coffee Catch Ups<br />

Monthly catch ups on Saturday mornings<br />

Led by volunteers, who also live with neurological conditions like Claire<br />

Kennelly, these groups are ready to welcome those who are newly<br />

diagnosed or simply seeking connection at any stage of their journey.<br />

“It’s good because everybody understands. We honestly talk about MS<br />

for maybe 10 minutes, then it is all about us. There is no judgement and<br />

there are lots of new people all the time – it’s really fun!”<br />

Claire’s group enjoys a variety of activities, including picnic days, movie<br />

and park outings, visits to museums and concerts – the list goes on!<br />

There are also themed morning teas once a month, with prizes, as well<br />

as the opportunity just to connect with others informally.<br />

After five years of running the club north of the river, the group has<br />

branched out south of the river, too.<br />

Contact clairethepa@gmail.com or jodivictoria@gmail.com to<br />

find out more. You can also search MS & All Neurological<br />

Conditions Perth on Facebook to join the group.<br />

www.facebook.com/groups/489935325840464<br />

Mindfulness and Meditation Group<br />

Monthly catch ups on Tuesday mornings<br />

Are you interested in learning Mindfulness and Meditation to improve<br />

your stress management and resiliency skills, or simply incorporate<br />

more relaxation into your life? Come along to our monthly group<br />

facilitated by our experienced counsellors.<br />

To register for the Butler group, contact Eve.Parsons@mswa.org.au<br />

or call 0427 124 391. You can also contact Ian.Sampson@mswa.org.au<br />

or call 0429 226 997<br />

MSWA Art Group<br />

Second Thursday of the month<br />

Would you like the opportunity to explore your story with art and work<br />

creatively with a group to gain connection and understanding? We are<br />

looking for new members to join our ongoing monthly Rockingham Art<br />

Group, facilitated by our experienced counsellor Alyson Yearsley.<br />

Please note, Counselling Group funding will be required.<br />

To reserve your spot, please contact Alyson.Yearsley@mswa.org.au<br />

or call 0439 790 490<br />

28 29


News In Brief<br />

MSWA Albany facilities take<br />

top accolade<br />

MSWA Albany’s Services Centre and Accommodation<br />

facilities were awarded the 20<strong>23</strong> Commonwealth Bank<br />

Best Regional Project for the Great Southern region at<br />

the Master Builders Awards.<br />

The Wauters Building Company (pictured), who delivered<br />

the building project for MSWA in collaboration with<br />

our Facilities Team, proudly accepted the award at the<br />

ceremony held at Crown in October.<br />

This major award win will see Wauters Building Company<br />

automatically entered into the National Finals for the<br />

Albany project, which is due to take place in 2024.<br />

MSWA would like to congratulate Wauters Building<br />

Company on this outstanding win.<br />

This project was a team effort which would not have<br />

been possible without long-standing partners Parry and<br />

Whyte Architects, the City of Albany and of course our<br />

incredible Facilities Team lead by Steve Corbett.<br />

A night at the Ballet<br />

The West Australian Ballet invited some of our MSWA Clients to<br />

enjoy a night out at the Ballet for the final dress rehearsals of Van<br />

Gogh and the Nutcracker as part of their community program.<br />

As you can tell from the smiles, there was a great night had by all.<br />

Thanks West Australian Ballet and to their supporters who made<br />

this initiative possible.<br />

Would you like to be notified about future available tickets?<br />

Send an expression of interest to marketing@mswa.org.au<br />

Slot Car Group tracks big prize<br />

for MSWA<br />

The Mandurah Raceway Slot Car Group (MRSCG) held<br />

their fourth annual community fundraising event on 11<br />

November, kindly choosing MSWA as the beneficiary for<br />

this year’s event.<br />

Group members were joined by family, friends and<br />

community members to partake in the fun of racing<br />

1:32 scale slot cars on a routed wood racetrack. Later<br />

in the evening, after a scrumptious meal, an auction<br />

was held, with goods donated by various businesses<br />

and individuals.<br />

The varied, high-quality goods on offer, coupled<br />

with enthusiastic bidding saw an amazing total of<br />

$1,450 raised on the night for MSWA. A huge well done<br />

to all involved!<br />

If you are interested to take a look or have a drive,<br />

contact Dave at slotman@gmail.com<br />

Diwali<br />

Diwali is the festival of lights that celebrates the triumph<br />

of good (light) over evil (darkness) in South Asian cultures<br />

and is celebrated over five days in parts of India.<br />

In November, this auspicious occasion was celebrated<br />

at Wilson, organised by the Funding team, and Rivervale,<br />

organised by the Rostering team. We think everyone<br />

looked amazing!<br />

Submit your article to us<br />

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

Clients might like to read? We invite you to share your experiences with us.<br />

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

Suggestions, complaints and compliments<br />

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

and where we can improve.<br />

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

provided by telephoning 6454 3146, via feedback@mswa.org.au or writing to<br />

Quality and Compliance; Locked Bag 2, BENTLEY DC 6983.<br />

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

Another grand adventure for<br />

Horst Bemmerl<br />

After walking for eight consecutive days, MSWA Board<br />

Chair Horst Bemmerl and his wife Helen completed the<br />

Camino de Santiago pilgrimage – a 159.7km journey!<br />

Horst never lets his MS diagnosis get in the way of<br />

achieving his epic adventures - we can't wait to see what<br />

journey he will tackle next.<br />

In case you missed it, you can read Horst's story here:<br />

https://mswa.org.au/living-well/our-stories/horst-bemmerl<br />

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