MSWA Bulletin Magazine Winter 2021

MSWA Volunteer Luncheon | Our new respiratory | Physiotherapy service | Our $10m contribution to research | Pain and pain management series

MSWA Volunteer Luncheon | Our new respiratory | Physiotherapy service | Our $10m contribution to research | Pain and pain management series


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

<strong>Winter</strong> <strong>2021</strong><br />

mswa.org.au<br />

INSIDE<br />

/ <strong>MSWA</strong> Volunteer Luncheon<br />

/ Our new respiratory<br />

physiotherapy service<br />

/ Our $10m contribution<br />

to research<br />

Barbara Williams receiving her Certificate<br />

of Appreciation, in recognition of her<br />

invaluable volunteer contribution to <strong>MSWA</strong>.<br />

/ Pain and pain<br />

management series



29 Parkhill Way 9365 4888<br />

Fax 9451 4453<br />

Freecall 1800 287 367<br />

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




Nicola Washington 9365 4840<br />


Carol Chong 9365 4873<br />

NDIS TEAM 9365 4824<br />


Wilson Outreach 9365 4830<br />

Beechboro Lodge 9377 7800<br />

Southside Outreach 9592 9202<br />

Albany Outreach 6154 5149<br />

Bunbury 6454 2800<br />




Sue Shapland 6454 3174<br />


Manager, Alimul Tasin 9385 9574<br />


Manager, Danuta Figurska 9356 2747<br />


Manager, Jo Nouwland 9331 5780<br />



Manager, Linda Kidd 9725 9209<br />



Manager, Chris Rush 6154 5120<br />


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

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

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

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

For general feedback or complaints please<br />

contact Michelle John 6454 3173 or<br />

feedback@mswa.org.au<br />


Sue Shapland, Nicola Washington, Libby<br />

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

Nicolette Murphy.<br />


Geoff Hutchinson, Carol Chong,<br />

Misty Reinkowsky, Dajana Tesevic,<br />

Vanishree Chetti, Denise Vogels,<br />

James Beckett and Crystal Chan.<br />

The Editorial Working Group welcomes<br />

unsolicited submissions.<br />

All articles are subject to a reviewing<br />

process. The views expressed are those<br />

of the authors and do not necessarily<br />

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

directors or officers.<br />

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

neurologist’s diagnosis.<br />



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

and function.<br />



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

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

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


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

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

PAMELA WINDRAM, MANAGER: 6454 3140<br />


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

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

PAMELA WINDRAM, MANAGER: 6454 3140<br />


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

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

understanding about your life.<br />




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

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

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

KATH KNIGHTS, MANAGER: 9365 4835<br />


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

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

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

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

VICTORIA AMEY, MANAGER: 9365 4851<br />


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

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

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



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

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

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

and support networks.<br />



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

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

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

neurological condition.<br />




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

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


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



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


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


ON THE COMMUNITY. . . . . . . . . . . . . . . . 7<br />

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


<strong>2021</strong> ANNOUNCEMENT. ........... 8-9<br />


OF $10M. ........................ 10-11<br />

RESEARCH ROUND UP. .......... 12-14<br />


PHYSIOTHERAPY SERVICE ..........15<br />

IMAGINE . ..........................16<br />


OUR ROLE AT <strong>MSWA</strong> . ..............17<br />


OPERATIONS MANAGER . ...........17<br />


TYPES OF PAIN .....................19<br />

INVISIBLE THING. .................. 20<br />



MENTAL HEALTH? ..................21<br />



OF SPIRIT . ..................... 22-23<br />


SURVEY . ....................... 24-25<br />


ALBANY SERVICES CENTRE . ....... 26<br />

MASSAGE THERAPY AT <strong>MSWA</strong> . .... 27<br />

POSTURAL CARE NEWS. ........... 28<br />



ASSESSMENTS. .................... 28<br />

<strong>2021</strong> <strong>MSWA</strong> STATIONARY CYCLE<br />

CHALLENGE. ...................... 29<br />

VOLUNTEER LUNCHEON <strong>2021</strong>. .. 30-31<br />


AND CAMPS COORDINATOR ........31<br />


RESPITE UPDATE .................. 32<br />


WILSON . .......................... 33<br />

THE IMPORTANCE OF PETS ..... 34-35<br />


AND COMPLIMENTS . .............. 35<br />



OF THE CEO<br />


CEO<br />

It seems like only yesterday that I<br />

fronted up for my first day at the MS<br />

Society, as it was called in those days.<br />

But recently in my desk at home, I<br />

found a copy of the very first <strong>Bulletin</strong><br />

that I had contributed to. There was<br />

a photo of this fresh-faced young<br />

man with a mighty crop of hair … and<br />

not a grey one to be seen! Perhaps it<br />

wasn’t yesterday, after all!<br />

As my last day at <strong>MSWA</strong> creeps<br />

ever closer, I find my mind turning<br />

more and more towards the future.<br />

Not mine, but that of our fine<br />

organisation.<br />

I wouldn’t be able to sleep in my<br />

bed at night, if I felt that I was<br />

leaving <strong>MSWA</strong> with any points of<br />

vulnerability or any suggestion that<br />

our future is not assured. <strong>MSWA</strong> has<br />

been ‘my baby’ for twenty years,<br />

after all, and the job of supporting<br />

people with neurological conditions<br />

in our state is just too important.<br />

We are so used to spin, froth and<br />

bubble in the broader world of<br />

communication, my objective<br />

in this article is to ‘give it to you<br />

straight’, so there can be no room<br />

for interpretation or uncertainty<br />

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

Let’s start with the financial<br />

numbers. Record revenue. Record<br />

net profit/surplus. Record net<br />

assets on balance sheet. (The leader<br />

in Australia).<br />

And now to our footprint. A record<br />

number of locations throughout WA<br />

serving people with neurological<br />

conditions. (The leader in Australia).<br />

As for Client services. Those real<br />

things like physio, nursing, OT,<br />

counselling, care support work.<br />

A record breadth and number of<br />

services, including hours delivered.<br />

(The leader in Australia).<br />

Then there’s research. A record<br />

contribution to research in the<br />

history of our nation. (The leader<br />

in Australia).<br />

If you are one of our 1,000 staff<br />

members, Board directors,<br />

volunteers, Clients or partners,<br />

please don’t feel embarrassed by<br />

the summary of our achievements.<br />

Feel proud of your part in the team<br />

effort and take a bow.<br />

However, as I always say – enjoy<br />

the moment, but don’t take too<br />

long! We need to make the future<br />

so bright that we will all need to<br />

wear sunglasses!<br />

My successor will undoubtedly put<br />

their own mark of leadership on our<br />

future. I have worked closely with<br />

our Board in recent months to build<br />

the framework for our next strategic<br />

plan, but I believe that our new CEO<br />

will bring different qualities that will<br />

take us from strength to strength.<br />

My professional advice to that<br />

person will be simple. Stay focused<br />

on the main game. There are really<br />

only three bits to this job. 1. Client<br />

services, 2. Accommodation and<br />

respite, and 3. Our role in research.<br />

A myriad of people will try to distract<br />

you with the ‘noise’ of running a<br />

company. But stay focused on the<br />

main three. Keep your eyes on the<br />

road ahead and all will be well.<br />

My personal advice will be to have<br />

fun. Sure, you’ll get spurious legal<br />

claims, journalists trying to catch<br />

you out and more commercial<br />

challenges than any man or woman<br />

really needs, but it’s the best job<br />

in the world and you get the<br />

privilege of working with truly<br />

inspirational people.<br />

As I pen this article for the last<br />

time, I am reminded of how<br />

Walter Cronkite signed off his<br />

final appearance.<br />

“That’s the way it is.”<br />

<strong>MSWA</strong> is on the strongest of<br />

foundations and I assure you<br />

that the focus of our Board<br />

and management is on<br />

delivering our future success.<br />

So, as I say thank you and goodbye,<br />

I hope that Walter will forgive me if I<br />

adapt his signature phrase to:<br />

“That’s the way it will be.”<br />









“A problem is a chance for<br />

you to do your best.”<br />

Duke Ellington.<br />

How true this is, although at times<br />

the problems we face certainly test<br />

our resilience and resolve and often<br />

our patience too!<br />

As has been said numerous times,<br />

over the last couple of years we<br />

have faced many problems – floods,<br />

fires and of course COVID-19. All of<br />

these have really tried the resolve<br />

of most of us but have also shown<br />

how adaptable and creative people<br />

can be. Just look at the race to get<br />

the vital vaccines developed to<br />

combat the spread of COVID-19, the<br />

improved testing kits speeding up<br />

the process and turnaround time<br />

for results, and the research that is<br />

now being funded to improve our<br />

understanding of bushfires and<br />

how they can be better managed.<br />

Research builds our understanding<br />

and provides hope for a better<br />

future and better outcomes, and<br />

not just in the medical field. <strong>MSWA</strong><br />

continues to proudly support<br />

research into neurological conditions<br />

in WA, nationally and internationally<br />

through the International Progressive<br />

MS Alliance. We provide vital funding<br />

for several institutions and their teams<br />

in WA and one of the great things<br />

about that is that our Clients have the<br />

opportunity to actually participate<br />

in, contribute to, and benefit from<br />

their projects and outcomes. You<br />

can read about our very exciting<br />

research funding announcement in<br />

this <strong>Bulletin</strong>; another record amount<br />

we can all be truly proud of!<br />

Our high support accommodation<br />

projects are moving along nicely.<br />

Albany, which also includes an<br />

amazing Services Centre, whilst<br />

experiencing some slight delays<br />

due to supplies and the weather, is<br />

coming along nicely and expected<br />

to open in March 2022. I already<br />

have several potential residents on<br />

the waitlist which is exciting.<br />

The designs and planning for<br />

Montario Quarter, our most<br />

ambitious build with 20 units in<br />

Shenton Park, is also progressing<br />

well and will be very impressive – we<br />

can’t wait to show off the drawings<br />

when we are able.<br />

Across <strong>MSWA</strong> we are experiencing<br />

ongoing growth and change and<br />

many improvements as we focus<br />

on quality service delivery and of<br />

course compliance. Our annual<br />

Client Satisfaction Survey is also<br />

featured in this issue and has again<br />

provided us with valuable feedback<br />

and many very positive results.<br />

Thank you to everyone who took<br />

the time to participate.<br />

As we continue to be challenged<br />

by COVID-19 and face the cold and<br />

wet winter with our usual colds<br />

and flu risks I hope you are keeping<br />

well and following the advice of the<br />

Health Department (and your own<br />

GP and/or neurologist) regarding<br />

vaccinations for the flu and<br />

COVID-19. Advice can be conflicting<br />

and can change but seeking advice<br />

from the professionals who are<br />

up-to-date is essential.<br />

We hope you enjoy this edition<br />

of <strong>Bulletin</strong> and the information<br />

and articles are helpful and<br />

enjoyable. Take care.<br />


MEMBER &<br />





Welcome to the winter<br />

edition of our Member &<br />

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

and what a cold start<br />

it has been.<br />

When I moved to Perth from the<br />

UK, I did not think that I would see<br />

the scraping of ice from cars in the<br />

morning again. Well, I was certainly<br />

wrong on that assumption,<br />

when we hit some of our lowest<br />

temperatures on record through<br />

June. Probably the first time I have<br />

seriously considered the need for a<br />

big winter coat and woolly hat!<br />

As we close out another financial<br />

year, and one that has been<br />

unpredictable and incredibly<br />

challenging for everyone, it<br />

is fantastic to report another<br />

successful year. The dedication of<br />

the team and the flexibility of our<br />

Clients has enabled us to record an<br />

increase in service hours delivered<br />

across our Client base.<br />

It is great to see more people living<br />

with a neurological condition<br />

gaining access to funding through<br />

the NDIS for essential services<br />

and support.<br />

Our Client Satisfaction Survey<br />

returned some great results. You<br />

can read these on page 24-25 but<br />

once again it was fantastic to record<br />

an overall satisfaction rate of 90%.<br />

As always, we will be working on<br />

more improvements over the next 12<br />

months and already have a number of<br />

projects started that will improve our<br />

delivery of service to you, our Clients,<br />

including new systems to improve<br />

our processes and engagement with<br />

both staff and Clients.<br />

This edition sees the start of a series<br />

of articles on pain management<br />

(p. 19). We know this to be a<br />

much-discussed topic amongst our<br />

Clients and hope to bring you some<br />

helpful information on the subject<br />

from a variety of our practitioners.<br />

Our annual Client forum is<br />

scheduled to be held in September,<br />

all being well. This is a great forum<br />

to attend where you can hear our<br />

experts talk about the latest in<br />

research and new technologies, and<br />

how we at <strong>MSWA</strong> contribute to the<br />

latest innovations. Keep an eye out<br />

for the details, we look forward to<br />

welcoming you to this forum.<br />


It has been eight years since the<br />

National Disability Scheme (NDIS)<br />

started back in July 2013 and is<br />

currently supporting more than<br />

450,000 Australians living with<br />

a disability, including 260,000<br />

Australians who never previously<br />

received support.<br />

The National Disability Agency<br />

(NDIA) released in July an<br />

interim update to the Financial<br />

Sustainability Report.<br />

Numbers reported on forwardlooking<br />

assumptions.<br />

/ NDIS expenditure could grow<br />

to $40.7 billion in 2024-25 which<br />

is $8.8 billion above the current<br />

Portfolio Budget Statement<br />

estimates.<br />

/ NDIS expenditure could be $22.6<br />

billion higher than the Portfolio<br />

Budget Statement estimates<br />

over the four years from <strong>2021</strong>-22<br />

to 2024-25.<br />

/ Participant numbers could<br />

reach 682,760 at 30 June 2025<br />

and 870,761 at 30 June 2030,<br />

compared to the Productivity<br />

Commission estimates of 582,860<br />

at 30 June 2030.<br />

The NDIA continues to review the<br />

scheme to improve participant<br />

experience and continued<br />

sustainability and growth of<br />

the scheme.<br />

If you have any questions<br />

regarding your NDIS plan,<br />

please do not hesitate to contact<br />

ndisenquiries@mswa.org.au<br />

Our team is always ready to help<br />

you navigate any problem or<br />

question you may have.<br />





In the 20 years since we narrowly avoided the Y2K bug and said<br />

hello to a new millennium, the proportion of the population<br />

aged 65 years and above increased 4% to 16.3% nationally.<br />

This group is projected to increase<br />

rapidly over the next decade as<br />

further cohorts of baby boomers<br />

(those born between the years<br />

1946 and 1964) turn 65. This growth<br />

means that more and more people<br />

will be utilising aged care packages<br />

for their ongoing support. In fact,<br />

as of 30 June 2020, there were<br />

11,049 people accessing aged care<br />

services in the community while<br />

another 16,210 individuals are being<br />

supported within the residential<br />

care sector.<br />

With these significant numbers<br />

of participants, a greater focus is<br />

now being placed on the impact<br />

the aged care sector has on our<br />

community. In December 2020,<br />

a number of Western Australian<br />

aged care providers engaged<br />

research firm ACIL Allen to produce<br />

a detailed study quantifying the<br />

important economic and social<br />

impact of the aged care sector<br />

to Western Australia. The report<br />

released in May examined the aged<br />

care sector across three metrics<br />

including ‘economic contribution’,<br />

‘economic impact’ and ‘the social<br />

return of the aged care sector’.<br />

The result was startling, finding<br />

a large and growing sector that<br />

makes a massive contribution to<br />

the community.<br />

The report estimated that in 2019-<br />

20, the aged care sector directly<br />

contributed $2 billion to the WA<br />

economy, equal to one in every<br />

seven dollars of activity across<br />

the entire healthcare and social<br />

assistance sector. Additionally, one<br />

in every 25 FTE jobs across WA were<br />

directly or indirectly supported by<br />

the aged care sector. To put that into<br />

perspective, the FTE jobs created as<br />

a result of WA’s aged care sector<br />

in 2019-20 is equivalent to the total<br />

number of people employed by<br />

Rio Tinto, BHP, FMG and Woodside<br />

combined.<br />

Perhaps the biggest impact the<br />

aged care sector had was the<br />

social impact its funding can have<br />

on participants and their families.<br />

The report measured social impact<br />

based on healthcare cost savings,<br />

improved health outcomes, direct<br />

economic value, carer participation<br />

in the workforce and the relief of<br />

direct care requirements for family<br />

members. The largest benefit was<br />

from the productivity benefits<br />

provided by the aged care sector.<br />

In particular, the report estimated<br />

that the aged care sector assisted<br />

the WA community to the tune<br />

of $1.8 billion through the avoided<br />

loss of productive labour resources.<br />

The report points to a sector that is<br />

making a significant difference to<br />

the community.<br />

In late 2019, <strong>MSWA</strong> joined the sector<br />

by becoming a registered aged care<br />

provider. Our goal mirrors that of the<br />

providers surveyed within this report<br />

in helping to improve participants’<br />

health outcomes and supporting<br />

families to be active participants in<br />

the community. Entry into the aged<br />

care sector also allows us to provide<br />

ongoing support to those missed<br />

by the NDIS and other funding<br />

schemes due to their age. Over the<br />

coming months we will be working<br />

to grow our Home Care Package<br />

participant numbers and support<br />

our Clients to maintain their health<br />

and independence.<br />

Like the Western Australian<br />

economy, as <strong>MSWA</strong><br />

continues to grow, the aged<br />

care sector will bring a<br />

significant impact, allowing<br />

us to support more and<br />

more Clients.<br />

If you would like to read the full<br />

report it is available by typing<br />

‘Economic and Social Impact of the<br />

Aged Care Sector in WA’ into your<br />

search engine.<br />






<strong>MSWA</strong> COMMITMENT TO RESEARCH,<br />

<strong>2021</strong> ANNOUNCEMENT<br />

Last month, <strong>MSWA</strong> was proud to announce that in this <strong>2021</strong>/22 financial year, we are<br />

committing a record-breaking amount of $10 million to neurological research.<br />

This new $10 million contribution<br />

is being used by recipients to<br />

advance studies to clinical trials for<br />

new treatments and medications,<br />

develop and trial new apps and<br />

educational tools, and provide<br />

novel insights that add to<br />

the knowledge of the wider<br />

neurological research community.<br />

Marcus Stafford, our CEO, said of<br />

the announcement, “As we prepare<br />

to celebrate our champions in<br />

the forthcoming Olympic Games,<br />

supporters of <strong>MSWA</strong> should feel<br />

proud to take their place on the<br />

podium. <strong>MSWA</strong>’s $10 million<br />

contribution to research is a gold<br />

medal winning achievement for<br />

people with neurological conditions.<br />

In fact, I am delighted to say that<br />

this record-breaking contribution<br />

to research makes <strong>MSWA</strong><br />

the largest non-government<br />

funder of neurological research<br />

in Australia.”<br />

While we contribute funding for<br />

projects and studies across Australia<br />

and the world, we are particularly<br />

proud of the ongoing support of<br />

neurological research taking place<br />

in Western Australia. By supporting<br />

local institutions and experts, we<br />

are making research developments<br />

accessible to our community, and<br />

providing opportunities for Western<br />

Australia to become a hub for high<br />

quality research.<br />


We are pleased to once again<br />

be partnering with MS Australia,<br />

the International Progressive<br />

MS Alliance, the Perron Institute,<br />

Curtin University, Edith Cowan<br />

University, and Telethon Kids<br />

Institute in projects they<br />

are leading across various<br />

neurological research areas.<br />

Associate Professor Desmond<br />

Graham, President of MS Australia,<br />

said, “This funding commitment<br />

from <strong>MSWA</strong> is significant, and<br />

on behalf of MS Australia, the<br />

MS community and myself as a<br />

person living with MS, I would like<br />

to thank the <strong>MSWA</strong> Board and CEO<br />

Marcus Stafford.<br />

“This funding boost will assist<br />

to supercharge MS research in<br />

Australia, some great examples of<br />

which occur in WA. It will accelerate<br />

the world leading work of our MS<br />

researchers, enabling them to<br />

identify new treatments for people<br />

living with MS, in particular those<br />

with the progressive forms of the<br />

disease, as well as investigate ways<br />

to enhance the brain’s defences<br />

against MS and repair myelin.”<br />

The Perron Institute’s CEO Steve<br />

Arnott said, "<strong>MSWA</strong>’s funding<br />

means our researchers can continue<br />

striving to find novel treatments<br />

for people living with a range of<br />

neurological conditions.<br />

"Their support is also helping<br />

the Perron Institute to expand<br />

its work with both new and<br />

existing programs and increase<br />

its achievements within various<br />

research streams."<br />

Our commitment to research helps<br />

us get one step closer to having<br />

a better understanding of the<br />

causes of neurological conditions,<br />

finding new treatments, realising<br />

potential cures, and providing<br />

hope for people living with<br />

neurological conditions.<br />

As always, our contribution is<br />

only made possible through<br />

the incredible support of our<br />

fundraising community. Together,<br />

we are ready to make an impact.<br />

More about the projects we are<br />

funding is detailed over page.<br />

Two <strong>MSWA</strong> Clients (your representatives on this year’s Editorial<br />

Working Group) attended the media conference at which the<br />

funding announcement was made.<br />

Nicolette Murphy, who lives with MS, said, “The $10 million<br />

announcement gives me hope that we will have a cure in<br />

my lifetime.”<br />

Tracey Hockey, who had a stroke in 2016, said, “I can only comment<br />

about how the research helps me personally, now and in the<br />

future. <strong>MSWA</strong> are not only contributing to what neuro needs are<br />

Nicolette Murphy and<br />

Tracey Hockey<br />

right now, they support research that helps in evolving better<br />

ways forward. As an <strong>MSWA</strong> Client it excites me to know that the<br />

care and information I'm receiving from them is new and cutting<br />

edge. <strong>MSWA</strong>'s funding makes sure that we with neuro conditions<br />

have the most up-to-date information, care and technology<br />

available. New ways of living, knowing, thinking and being.”<br />





As part of this year’s record-breaking $10 million contribution, we are continuing to support<br />

projects we already fund, but we have new studies and trials that have exciting implications<br />

for neurological research.<br />


Our partnership with Curtin<br />

University is growing. Associate<br />

Professor Lucinda Black is leading<br />

a team investigating diet and<br />

MS alongside goals including<br />

the development of education<br />

resources and rigorous protocols<br />

for diet-related clinical trials. Diet<br />

is also being considered by Clinical<br />

Professor John Mamo at CHIRI,<br />

an Institute within Curtin, who<br />

is heading a clinical intervention<br />

for MS utilising a high-fat diet<br />

to achieve remyelination in a<br />

unique trial.<br />

Additionally, Professor Mamo<br />

and his team are looking at the<br />

effect to ageing and developing<br />

neurodegenerative diseases, linking<br />

lifestyle factors of Parkinson’s, Motor<br />

Neurone disease, Huntington’s<br />

disease and MS. This is linked to<br />

a novel trial that has promise for<br />

new treatments for Alzheimer’s<br />

by repurposing a drug used<br />

previously for cardiovascular<br />

disease and stroke.<br />

Associate Professor Anne Whitworth<br />

is leading an exciting new project to<br />

support long-term rehabilitation of<br />

communication skills after stroke.<br />

Her team will be developing an<br />

interactive app to complement<br />

speech therapy interventions. The<br />

aim of the project is to improve<br />

functional language and cognitive<br />

skills by designing an approach<br />

that can be done freely at home to<br />

complement structured sessions.<br />

Additionally, there will have an<br />

evaluation trial to demonstrate<br />

the benefits, where findings<br />

could also hold value for other<br />

neurological conditions.<br />


The research portfolio we support<br />

at ECU is expanding. Translating<br />

research into practice, the<br />

multidisciplinary team in the<br />

Systematic Profiling in Neurological<br />

Conditions trial, led by Professor<br />

Moira Sim, are identifying<br />

markers in individuals that will<br />

assist with developing, delivering<br />

and evaluating more targeted<br />

therapeutic interventions for stroke,<br />

Huntington’s, Parkinson’s and MS.<br />

Specific interventions include light<br />

therapy glasses promoting more<br />

effective sleep and reducing fatigue<br />

and the MindPod exoskeleton for<br />

upper limb rehabilitation.<br />

Associate Professor Lucinda Black & Professor John Mamo (Curtin University).<br />







Associate Professor Jenny Rodger<br />

(middle) (The Perron Institute).<br />


Professor Moira Sim and Keith Rappa (Edith Cowan University).<br />


Clinical Professor Allan Kermode<br />

is leading a team to examine<br />

biomarkers, neurofilaments, disease<br />

trajectory, and evaluating brain<br />

lesions in the MS Demyelinating<br />

Diseases group. Professor Kermode<br />

is also a key MS researcher and<br />

contributing data to a national and<br />

international data research registry<br />

for MS.<br />

Associate Professor Jenny Rodger<br />

is continuing her research into<br />

neuroplasticity as it heads into<br />

human clinical trials using<br />

transcranial magnets in stroke,<br />

MS and more. Stroke is also the<br />

focus for Adjunct Professor Bruno<br />

Meloni and Clinical Professor Neville<br />

Knuckey who are developing a<br />

neuroprotective agent.<br />

Research into MND, Parkinson’s<br />

and other conditions continues for<br />

Professor Sulev Koks. Trajectories<br />

of Outcome in Neurological<br />

Conditions (TONiC) continues to<br />

gain traction with the possibility<br />

of opening research to Parkinson’s<br />

Disease and MS. Professor Koks is<br />

teaming with Professor Anthony<br />

Akkari to investigate the possibilities<br />

of genomic medicine.<br />

The two are seeking to identify<br />

genes that have predisposition<br />

for developing neuro conditions<br />

like MND, and attempting to<br />

find therapies to block the gene,<br />

reduce risk and improve outcomes.<br />

Parkinson’s and gut bacteria (the<br />

microbiome) are partnered again<br />

through Dr Luke Whiley’s study to<br />

correlate changes in cognitive and<br />

motor-related inflammation.<br />

Finally, Dr Jonaton Leffler based<br />

at the Telethon Kids Institute, and<br />

under the purview of Professor Prue<br />

Hart, is further analysing samples<br />

from the PhoCIS biobank to identify<br />

MS pathogenesis by examining<br />

antigens through innovative<br />

methods. Specifically, he will be<br />

examining female predispositions<br />

through cell dysfunctions, and<br />

pathogenic and autoimmune<br />

mechanisms.<br />




Once again MSRA is receiving<br />

allocations for MS research in<br />

Australia with $1million to be<br />

allocated to the International<br />

Progressive MS Alliance. More<br />

details about these will be<br />

announced in due course.<br />


For more information about<br />

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

and the research projects we are<br />

currently funding, visit our website:<br />

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

commitment-to-research<br />




ROUND UP<br />






Read more at:<br />

multiplesclerosisnewstoday.com<br />

Sleep deprivation may worsen<br />

memory in early MS; James<br />

Sumowski et al; May 05, <strong>2021</strong>.<br />

A new study suggests that sleep<br />

deprivation may worsen memory<br />

in people with clinically isolated<br />

syndrome (CIS) or relapsingremitting<br />

multiple sclerosis (RRMS).<br />

The study ‘Sleep disturbance<br />

and memory dysfunction in early<br />

multiple sclerosis’ was published in<br />

Annals of Clinical and Translational<br />

Neurology.<br />

185 adults diagnosed with CIS or<br />

RRMS in the previous five years<br />

were included and underwent a<br />

number of assessments, including a<br />

patient-reported sleep disturbance<br />

questionnaire, and measures of<br />

memory and cognitive speed.<br />

The memory and cognition<br />

tasks were also completed by 50<br />

healthy controls with matched<br />

characteristics to the MS patients in<br />

the study.<br />

Overall, 40.2% of PwMSs reported<br />

sleep disturbances. However, those<br />

with trouble sleeping reported<br />

worse mood and increased fatigue<br />

and had a higher number of brain<br />

lesions than those without sleep<br />

disturbances. Relative to healthy<br />

controls, memory was worse among<br />

patients with sleep disturbance, but<br />

not among patients without sleep<br />

disturbance.<br />

Based on studies, an explanation<br />

for the link between sleep and<br />

memory could be that inadequate<br />

rest impairs the hippocampus’<br />

ability to process new information,<br />

leading to worse memory. The team<br />

concluded that their observations<br />

“connect patient-reported sleep<br />

disturbance specifically to poor<br />

memory in early MS.”<br />

Destroying myelin-damaging<br />

immune cells may be new therapy<br />

Recent research findings in<br />

Japan, using the mouse model,<br />

may potentially lead to a new<br />

therapy for MS. Vesicles containing<br />

the chemotherapeutic agent<br />

doxorubicin were used to destroy<br />

the aberrant, myelin-damaging<br />

immune cells that contribute to MS<br />

suppressing progression.<br />

The team tested this strategy<br />

in mice with experimental<br />

autoimmune encephalomyelitis<br />

(EAE). They discovered that their<br />

therapy, designated MOG-LipDOX,<br />

suppressed EAE symptoms through<br />

targeting T-cells, a class of immune<br />

cells primed to attack ‘foreign’<br />

molecules that invade the body,<br />

such as viruses and bacteria.<br />

Specifically, the treatment successfully<br />

suppressed symptoms for more than<br />

100 days and completely cured two<br />

mice — and without weight changes<br />

or signs of liver damage.<br />

The researchers found no evidence<br />

of immune cells infiltrating the<br />

central nervous system, ie, the brain<br />

and spinal cord, which is where<br />

the loss of myelin takes place. “The<br />

present study suggests that the<br />

use of these autoantigen-modified<br />

liposomes promises to be a suitable<br />

therapeutic approach for the cure<br />

of MS,” they concluded.<br />







Read more at:<br />

progressivemsalliance.org<br />

FDA backs further development of<br />

blood biomarker, neurofilament<br />

light, for clinical trials in MS<br />

A major milestone in the goal of<br />

increasing the number and speed<br />

of clinical trials in progressive<br />

MS was recently achieved when<br />

The International Progressive MS<br />

Alliance recently received a letter<br />

of support from the U.S. Food and<br />

Drug Administration (FDA). The<br />

letter encourages the exploration<br />

and development of further studies<br />

around a molecule in blood serum or<br />

plasma — neurofilament light chain<br />

(NfL) — as a potential rapid indicator<br />

of the value of an experimental<br />

therapy in early trials involving<br />

people with progressive MS.<br />

NfL is a fragment in the debris<br />

that enters the spinal fluid and<br />

blood when nerve wires (axons)<br />

are damaged. Studies of NfL have<br />

been underway to define how this<br />

biomarker may be used to help<br />

detect and predict disease activity<br />

and response to treatments, not only<br />

in MS but in other disorders. NfL may<br />

reflect ongoing disease pathology<br />

and may be more responsive to<br />

the effects of treatments than<br />

traditional imaging (MRI) outcomes<br />

in early phase trials.<br />

Dr. Robert J. Fox, Vice Chair of<br />

the Alliance’s Scientific Steering<br />

Committee said, “Having a simple<br />

blood test to quickly track the<br />

potential benefits of experimental<br />

therapies would be an enormous<br />

step forward for people with<br />

progressive MS, for whom there are<br />

too few therapies.”<br />



Read more at: griffith.edu.au<br />

Etanercept (Enbrel) trial in stroke<br />

Stroke is Australia's second largest<br />

cause of death, with one person<br />

suffering from the disease every<br />

10 minutes. An experimental<br />

treatment in the US is giving some<br />

stroke patients immediate relief<br />

and Griffith University (Queensland)<br />

has a clinical trial to examine<br />

its potential.<br />

The US FDA has approved<br />

Etanercept (Enbrel) for many years<br />

as a therapy to treat inflammatory<br />

diseases such as rheumatoid<br />

arthritis. Recently, doctors have<br />

begun using it to treat strokes.<br />

Studies in the US demonstrated peri<br />

spinal Enbrel improved mobility and<br />

pain in chronic stroke participants,<br />

concluding: Enbrel can provide<br />

significant and ongoing benefits for<br />

the chronic post-stroke management<br />

of pain and greater shoulder flexion<br />

by the paretic arm. Effects are rapid<br />

and highly significant, supporting<br />

direct action on brain function.<br />

A second Griffith University Stroke<br />

Trial is now successfully underway<br />

enrolling 80 participants. They have<br />

seen some spectacular responses in<br />

several of our participants.<br />

The focus of the trial is those who<br />

have had a stroke but experienced<br />

major fatigue since and also have<br />

some functioning and capacity to<br />

raise their stroke affected arm.<br />


Read more at: prilenia.com<br />

Phase 3 Huntington’s disease<br />

clinical trial news<br />

Pridopidine is being assessed in<br />

ongoing phase 3 global clinical trial<br />

PROOF-HD (PRidopidine Outcome<br />

On Function in Huntington’s<br />

Disease). The PROOF-HD phase<br />

3 study is being conducted<br />

in approximately 60 sites in<br />

collaboration with the Huntington<br />

Study Group (HSG) in North America<br />

and Europe, enrolling people with<br />

early Huntington’s.<br />

If successful in the trial this may<br />

lead to its approval as a treatment<br />

for Huntington’s disease.<br />

In prior clinical trials in HD patients,<br />

pridopidine demonstrated a<br />

beneficial effect in maintaining<br />

functional capacity after one year.<br />

HD patients and families highlight<br />

decreased functional capacity as a<br />

major burden on daily life. The Total<br />

Functional Capacity (TFC) scale is<br />

widely used by clinicians to assess<br />

disease stage and progression. This<br />

captures changes in HD patients'<br />

capacity to continue working,<br />

perform household activities,<br />

eat, dress, walk, and complete<br />

simple tasks.<br />

Pridopidine is the first drug to<br />

show maintenance of TFC at one<br />

year. This effect may also be seen<br />

and maintained for five years, as<br />

demonstrated in an open-label trial.<br />

The purpose of the study is to<br />

evaluate the effect of pridopidine<br />

on functional capacity, as well as<br />

on motor and behavioural features<br />

over 65 weeks.<br />




Read more at: jamanetwork.com<br />

Association of sex and age with<br />

mild traumatic brain injury-related<br />

symptoms: a TRACK-TBI study;<br />

Harvey S Levin et al.<br />

This study sought to determine if<br />

post-acute mild traumatic brain<br />

injury (mTBI) symptoms differ<br />

between men and women.<br />

2000 patients with mTBI were<br />

assessed 12 months post injury for<br />

the severity of cognitive and somatic<br />

symptoms and it was found to be<br />

significantly worse in women than<br />

in men. The association between<br />

mTBI and somatic symptoms was<br />

greater in women aged 35 to 49<br />

years than those aged 17 to 34 years<br />

or older than 50 years.<br />

Using a variety of testing tools,<br />

they evaluated mTBI patients<br />

and compared them with a post<br />

orthopaedic trauma cohort.<br />

Their results led them to<br />

conclude that women were more<br />

vulnerable than men to persistent<br />

mTBI-related cognitive and<br />

somatic symptoms. Postconcussion<br />

symptoms were also<br />

worse in women aged 35 to 49 years<br />

than in younger and older women,<br />

but further investigation is needed<br />

to corroborate these findings and to<br />

identify the mechanisms involved.<br />

Results suggest that individualised<br />

clinical management of mTBI<br />

should consider sex and age,<br />

as some women are especially<br />

predisposed to chronic<br />

post-concussion symptoms even<br />

12 months after injury.<br />


Read more at: mndscotland.org.uk<br />

Motor neurone disease: Edinburgh<br />

scientists reveal breakthrough<br />

Scientists in Scotland are a step<br />

closer to being able to reverse<br />

the damage caused by motor<br />

neurone disease (MND) following<br />

a breakthrough by researchers in<br />

Edinburgh.<br />

The team proved for the first time<br />

that axons – the long nerve fibres<br />

which connect and send electrical<br />

impulses from the nerve cells to<br />

the muscles – are shorter in cells<br />

affected by MND than in healthy<br />

cells. They also discovered that the<br />

movement of the mitochondria, the<br />

tiny energy cells which move up<br />

and down the axons, is impaired.<br />

Researchers have also found that<br />

the nerve cell damage – or motor<br />

neurons – caused by MND can be<br />

repaired by boosting the energy<br />

levels in these mitochondria.<br />

Once this was done in laboratory<br />

experiments, the axon reverted<br />

back to normal length.<br />

The effect was achieved in the lab<br />

using motor neurons grown from<br />

stem cells collected from people<br />

with a genetic mutation known<br />

to cause MND. These lab-grown<br />

motor neurons were then exposed<br />

to a virus which supercharged a<br />

key molecule vital to the healthy<br />

functioning of mitochondria.<br />

The team, based at the Euan<br />

MacDonald Centre for MND<br />

Research at Edinburgh University,<br />

believe they may be able to produce<br />

the same result in patients – not<br />

with a virus, but by re-purposing an<br />

existing drug instead.<br />

Dr Arpan Mehta, a lead scientist on<br />

the project, said: “Our data provides<br />

hope that by restoring the cell’s<br />

energy source we can protect the<br />

axons and their connection to<br />

muscle from degeneration. Work<br />

is already underway to identify<br />

existing licensed drugs that can<br />

boost the mitochondria and<br />

repair the motor neurons. This will<br />

then pave the way to test them in<br />

clinical trials.”<br />


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

Study: heat sensitivity in people<br />

with Parkinson’s disease<br />

A heat sensitivity study, which is<br />

being conducted by researchers<br />

at the Queensland University of<br />

Technology, has two aims:<br />

1. To increase knowledge and<br />

understanding of how people<br />

with Parkinson’s disease<br />

experience the heat.<br />

2. To develop a scale for the<br />

assessment of heat sensitivity in<br />

people with Parkinson’s disease.<br />

These findings will help to shed light<br />

on the experience of heat sensitivity<br />

in people with Parkinson’s disease<br />

and provide a tool for clinicians and<br />

researchers to assess heat sensitivity<br />

in people with Parkinson’s disease.<br />

The study is seeking interested<br />

participants, so if you have been<br />

diagnosed with Parkinson’s, you are<br />

invited to participate in this research<br />

project; just use the link below:<br />

survey.qut.edu.au/f/193936/87f4/<br />





<strong>MSWA</strong>’s new respiratory physiotherapy service is designed to assist Clients experiencing<br />

respiratory symptoms associated with their neurological condition. Respiratory physiotherapy<br />

incorporates both physiotherapy treatment techniques and prescription of specialised<br />

equipment to help improve respiratory efficiency. Services include education on airway clearance<br />

techniques, organising respiratory equipment, carer training, and liaising with your medical<br />

team to create respiratory action plans.<br />

The respiratory physiotherapy<br />

services may be beneficial for<br />

Clients who:<br />

/ are unable to clear secretions<br />

effectively,<br />

/ have an ineffective cough due to<br />

respiratory muscle weakness,<br />

/ may have frequent chest<br />

infections and/or frequent<br />

hospital admissions related to<br />

chest infections.<br />

Early referral to one of our respiratory<br />

physiotherapists is indicated<br />

for Clients with progressive<br />

neurodegenerative diseases eg<br />

MND, SMA, muscular dystrophy.<br />

Following a thorough assessment,<br />

the physiotherapist will discuss<br />

treatment techniques and specialised<br />

equipment (eg CoughAssist Machine)<br />

that can assist in improving respiratory<br />

efficiency. From these assessments<br />

each Client will be provided with an<br />

individualised treatment plan.<br />

The NDIS provides reasonable<br />

and necessary respiratory<br />

supports, including specialised<br />

equipment.<br />

<strong>MSWA</strong> Physiotherapist Maeve O’Shaughnessy demonstrating some of the<br />

new specialised respiratory equipment.<br />

As this process can take some time,<br />

please consider early referral and<br />

assessment so that applications<br />

can be made in anticipation of<br />

future needs.<br />

If you would like to book a<br />

respiratory physiotherapy review,<br />

please speak to one of our<br />

<strong>MSWA</strong> Nurses, Physiotherapists<br />

or Client Liaison Coordinators for<br />

a referral.<br />

Please note: <strong>MSWA</strong> does not<br />

provide emergency services.<br />

If any Client is acutely unwell<br />

they should contact their<br />

GP, relevant specialist or<br />

emergency department.<br />


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


Sometimes I like to imagine a world that was designed for<br />

people with disability. Can you imagine that?<br />

Imagine if every public toilet had<br />

grab rails and room for wheelchairs.<br />

Imagine if every private house was<br />

accessible for everyone. Imagine<br />

if there were things to touch<br />

which helped guide those with<br />

visual impairments. And voice<br />

activated instructions. Imagine<br />

if there were written guides for<br />

those with hearing impairments.<br />

Imagine if there was a raft of helpful<br />

people everywhere for those with<br />

cognitive issues.<br />

You’re dreaming, I hear you say. That<br />

will never happen. And I know you<br />

are right. There are too many people<br />

who think that those with disability<br />

are a negligible minority who do not<br />

need that much help. It’s not too<br />

many years ago that people with<br />

disability were expected to stay at<br />

home. Out of sight, out of mind.<br />

When I was growing up on a farm<br />

in the southwest of WA, we knew a<br />

family whose son was born around<br />

the time I was. Unfortunately, he was<br />

born with disability, both cognitive<br />

and physical. I was horrified one<br />

day when we visited, and the son<br />

was tied up to the kitchen table<br />

and sitting underneath it. This<br />

was explained as a way of keeping<br />

him safe while the parents were<br />

out working on their farm. In<br />

subsequent years he attended what<br />

in those days was called a ‘special<br />

school’. I hope he achieved some<br />

happiness in his life.<br />

Nevertheless, I like to imagine a<br />

different world. In a world that was<br />

designed with more thought for<br />

people with disability, there would<br />

be no barriers to stop anyone<br />

from doing whatever they wanted<br />

or needed in order to live a<br />

fulfilling life.<br />

Over the years since I first started<br />

struggling to walk because of my MS,<br />

I have done my best to encourage<br />

others to make changes wherever<br />

they could to make life easier for<br />

people like us. I have written and<br />

published reviews of restaurants<br />

that explain their accessibility or<br />

lack thereof. And spoken up when<br />

I’ve been in venues with problems.<br />

I have told my personal stories<br />

many times both in writing and in<br />

oral form when given the chance. I<br />

have joined organisations that work<br />

towards improving the situation for<br />

people with disability.<br />

I remember going to a restaurant<br />

many years ago which did have a<br />

wheelchair accessible bathroom.<br />

However, when I tried to go in, I<br />

discovered it was being used to<br />

store excess chairs. There was barely<br />

room for an able-bodied person to<br />

move in there, let alone someone in<br />

a wheelchair. What the h…?<br />

When I went to the management<br />

and pointed this out, they were<br />

apologetic and removed the chairs.<br />

I can only hope they never put them<br />

back again.<br />

Of course, things are better these<br />

days than they were even a mere<br />

twenty years ago. Efforts have been<br />

made. Most public buildings have<br />

access for people with disability.<br />

Even buses are able to be lowered<br />

to kerb level with a drop down ramp,<br />

meaning I, and others, can access<br />

them. There are tactile ridges in<br />

pavements near bus stops so that<br />

people with visual impairments can<br />

tell where the bus stop is. Mind you,<br />

for someone in a wheelchair those<br />

ridges are quite annoying, but I’m<br />

glad they are there nevertheless.<br />

Well, I will go on imagining and<br />

dreaming, and doing my little bit<br />

to improve the world for people<br />

with disability.<br />


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

If you would like to know more about disability rights<br />

and advocacy, People with Disabilities WA (PWdWA)<br />

has some great projects, campaigns and resources.<br />

Visit: pwdwa.org<br />




OUR ROLE AT <strong>MSWA</strong><br />

In this winter’s edition of <strong>Bulletin</strong>, we are shining a light on one of the most critical and diverse<br />

teams at <strong>MSWA</strong> – the Community Support team. Our team supports people living with a<br />

neurological condition by coordinating in-home care services that range from personal care to<br />

meal preparation and domestic assistance to social support.<br />

In-home care is an integral part<br />

of the support provided to <strong>MSWA</strong><br />

Clients by ensuring they can live<br />

well and at home while managing<br />

their neurological condition.<br />

The benefits of in-home care to<br />

people living with a disability<br />

cannot be downplayed, cultivating<br />

a strong sense of independence<br />

for our Clients while also assisting<br />

their families.<br />

Community Support currently<br />

manages over 400 support workers<br />

across metropolitan Perth and the<br />

South West. We provide an average<br />

of 29,907 hours of services per<br />

month to more than 650 Clients<br />

living with a neurological condition<br />

– numbers that are both challenging<br />

to manage from a logistical<br />

perspective, but also highlight<br />

the scale of the work we do in the<br />

community and the breadth of<br />

services provided on a daily basis.<br />

Like so many other care-related<br />

services, since the roll out of the<br />

National Disability Insurance<br />

Scheme (NDIS), we are experiencing<br />

an ongoing need for support<br />

workers. We value skilled, patient,<br />

confident, approachable and, of<br />

course, compassionate qualities<br />

in our team of support workers<br />

to ensure Client-centred care<br />

is provided.<br />

Just like our Clients’ needs are<br />

diverse and individualised, we<br />

aim to provide our team with the<br />

support they need, acknowledging<br />

that the role of the support worker<br />

is a rewarding, but sometimes<br />

challenging one.<br />

Now more than ever with<br />

the advent of the pandemic,<br />

we know that we are all in<br />

this together!<br />

For the rest of <strong>2021</strong>, the Community<br />

Support team continues to be<br />

driven by our goal of improving our<br />

Clients’ lives and providing quality<br />

support services. In the next edition<br />

of <strong>Bulletin</strong>, we hope to feature some<br />

of our valued support workers, so<br />

you can get to know them better.<br />




As <strong>MSWA</strong> continues to extend its services throughout the South<br />

West and Great Southern regions, we have appointed Jane Booth<br />

as Regional Operations Manager. This newly created role will offer<br />

leadership and support to our teams throughout the regions.<br />

Jane brings a range of managerial experience in both the community<br />

service and training sectors. A long-term resident of the South West,<br />

Jane has also served the local community for several years as a St<br />

John’s volunteer ambulance officer.<br />

Keen to promote a positive workplace culture with a focus on safety<br />

and wellness, Jane looks forward to working with the team at <strong>MSWA</strong>.<br />




In April, our clinicians had the opportunity to attend the ‘MS to the Minute’ workshop, during<br />

which latest updates on MS treatment and its management were shared. Together with other<br />

experts in the MS clinical space, Perth’s key MS consultants were present to provide insight into<br />

MS clinics and treatments – both current and new.<br />

Consultant Neurologists Prof<br />

Bill Carroll, Dr Jason Burton and<br />

Dr Kevin O’Connor presented<br />

information on current treatment<br />

options and case studies of current<br />

and new MS medications. COVID-19<br />

and what it means for people with<br />

MS was also discussed, along with<br />

some updates on vaccines. Prof<br />

Carroll provided us with some<br />

insights into the most recent MS<br />

research and a global update<br />

on the pandemic. Dr O’Connor,<br />

who is one of Australia’s leading<br />

neuroimmunologists, provided our<br />

clinicians with an overview of the<br />

various vaccines currently being<br />

rolled out worldwide and the impact<br />

on the various Disease Modifying<br />

Therapies. Dr Burton used real world<br />

data on specific Disease Modifying<br />

Therapies and their interactions<br />

with vaccines.<br />

Sue Shapland, our General Manager<br />

Strategic Supports & Residential<br />

Options, shared her knowledge on<br />

MS in the community and within<br />

residential facilities and how the<br />

introduction of the NDIS has<br />

created opportunities for <strong>MSWA</strong> to<br />

expand our services.<br />

Also present to share their<br />

knowledge on continence and pain<br />

management were KJ Lazarus (MS<br />

Immunotherapy and Continence<br />

Support Nurse) and Tim O’Maley<br />

(MS Nurse Practitioner). To apply<br />

practical learning, Lisa Papas<br />

(Manager Counselling, <strong>MSWA</strong>)<br />

and Petrina Keating (Neurological<br />

Nurse, <strong>MSWA</strong>) conducted case<br />

studies with all involved.<br />

<strong>MSWA</strong> has always believed in<br />

professional development for<br />

its staff members.<br />

This workshop has been an<br />

initiative to upskill our clinicians<br />

and provide updates on the latest<br />

initiatives around MS treatment<br />

and medication. As new therapies<br />

are constantly being trialled it is<br />

important that we keep abreast<br />

of latest developments so that we<br />

can better support our Clients in a<br />

constantly changing environment.<br />

To access the <strong>MSWA</strong> Nurse Support<br />

Line, call 9365 4888 or email<br />

nursesupportline@mswa.org.au<br />





Over the next few editions of <strong>Bulletin</strong>, we bring you a series of articles on pain and pain management.<br />

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

management, explains the different types of pain, how to recognise it in others, and the first steps<br />

to take in seeking help.<br />

Future editions will explore specific strategies for managing your pain.<br />



TYPES<br />

OF PAIN<br />

Pain can be described as an unpleasant sensory and emotional experience associated with<br />

actual or potential tissue damage.<br />

Pain results from complex brain<br />

processes which are influenced by<br />

overlapping physical, psychological<br />

and environmental factors.<br />

All pain is an individual human<br />

experience which is totally<br />

subjective and can only be<br />

truly appreciated by the person<br />

experiencing the pain.<br />

A person’s attitudes, beliefs and<br />

personality can strongly affect their<br />

pain experience.<br />

Pain can be divided into two main<br />

categories: Acute and Chronic (or<br />

Persistent)<br />

Acute Pain is pain that lasts for a<br />

short time and occurs after surgery,<br />

trauma or other conditions. It acts<br />

as a warning signal that tells us<br />

something is wrong with our body<br />

and to seek help.<br />

Chronic (or Persistent) Pain is pain<br />

that lasts beyond the time expected<br />

for healing following surgery,<br />

trauma or other conditions. It is<br />

often associated with an increased<br />

pain experience, not just in the area<br />

of injury but also in the surrounding<br />

tissues and nerves.<br />

There are two types of pain that<br />

may become chronic:<br />

Nociceptive Pain is pain caused by<br />

tissue damage such as a broken<br />

bone, a sprained ankle or pulled<br />

muscle. Musculoskeletal pain such<br />

as back pain caused by sitting for<br />

long periods, muscle stiffness,<br />

weakness and walking difficulties<br />

and muscle or joint pain due to<br />

spasms or muscle stiffness are<br />

also examples of nociceptive pain.<br />

In these cases the pain normally<br />

settles as the tissue heals, but it can<br />

persist and become chronic.<br />

Neuropathic Pain results from<br />

damage to nerves. It occurs due to<br />

changes in nerves of the Central<br />

Nervous System (the spinal cord<br />

and brain) after an injury to a nerve.<br />

Examples of neuropathic pain<br />

include shingles, phantom limb pain,<br />

complex regional pain syndrome,<br />

trigeminal neuralgia, post-incisional<br />

pain caused by surgery.<br />


If you have pain concerns discuss<br />

these with your family, carer,<br />

neurological nurse or GP. It is<br />

important to investigate your pain<br />

and why it occurs in order to develop<br />

strategies for any daily, sudden,<br />

severe or new pain, changes in your<br />

pain or unusual sensations.<br />

When reporting your pain, or that<br />

of a family member, to your GP it is<br />

helpful to describe where it is, how<br />

it feels, when it is felt and how it<br />

affects you or your family member.<br />

For carers and family members<br />

of non-verbal adults or children,<br />

indicators of pain may include: facial<br />

grimacing or frowning, guarding<br />

part of the body or withdrawing<br />

from touch, moaning, groaning or<br />

crying, restlessness and agitation.<br />

After assessment by a medical<br />

professional such as the GP or a<br />

pain consultant, an appropriate<br />

treatment plan can be made<br />

to reduce the experience of<br />

pain and improve quality of life.<br />

Pain assessment and effective<br />

management strategies are of<br />

high importance as these are of<br />

benefit in improving resilience and<br />

enabling continuance of activities<br />

even when pain is a challenge.<br />


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



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


THING<br />


I don’t look sick<br />

You don’t look stupid<br />

But looks can be deceiving<br />

It’s not a psychological thing<br />

This thing is very real<br />

Out of sight, out of mind<br />

not visible<br />

The whole thing is quite surreal.<br />

Some days are diamonds<br />

Some days are stones<br />

Fatigue at times<br />

won’t leave me alone<br />

I’m not drunk<br />

I may stagger a little<br />

Labelling me alcoholic<br />

Only manages to belittle.<br />

Summer heat - debilitating<br />

Limitations imposed - irritating<br />

Independence - diminishing<br />

Relying on others - frustrating<br />

Prognosis - mystifying<br />

General attitude - misunderstanding<br />

Life has shifted dramatically since diagnosis<br />

This invisible thing, Multiple Sclerosis.<br />

“I was informally diagnosed<br />

with multiple sclerosis 67<br />

years ago at the age of<br />

nine. This diagnosis was<br />

not formalised until 1989,<br />

following the introduction<br />

of MRI as a diagnostic tool.<br />

My current age, together<br />

with the accumulative<br />

weaknesses from three MS<br />

events over the years, have<br />

me needing to use a stick to<br />

get around. I attend physio<br />

at Beechboro once a week<br />

and have benefited greatly<br />

from being involved in the<br />

support group. I am grateful<br />

for the life I have and to<br />

members of the support<br />

group for sharing their<br />

life experiences.<br />

“Writing poetry provides<br />

me with an ability to<br />

express thoughts and<br />

feelings about my life and<br />

the world around me.<br />

“This poem is intended<br />

to express some of the<br />

frustrations associated<br />

with MS.”<br />


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






<strong>Winter</strong> is here and it is the perfect time to pursue your favourite hobbies.<br />

Having a hobby is not just about<br />

passing the days or enjoying quality<br />

‘me time’ but is crucial for our<br />

wellbeing and mental health. A<br />

hobby is a wonderful way to spend<br />

your spare time and unwind from<br />

our daily routines.<br />

Research has shown that people<br />

with hobbies rarely suffer from<br />

stress, depression, or low mood.<br />

Hobbies are vital for mental health,<br />

can make us feel happier and<br />

more relaxed. Hobbies promote<br />

mindfulness and staying present,<br />

become more patient, and help us<br />

to sleep better.<br />

My Clients have a vast variety<br />

of hobbies; these include<br />

knitting, patchwork, collecting<br />

antique postcards, scrapbooking,<br />

gardening, and painting to mention<br />

a few.<br />

Here are some other ideas:<br />

Music is a wonderful hobby.<br />

Listening to your favourite music<br />

or learning to play an instrument<br />

helps to relieve stress and channel<br />

uncomfortable emotions. Playing<br />

or singing with a group is a great<br />

way to communicate with others.<br />

Gardening is one of the best<br />

hobbies to get you in touch with<br />

nature. You could plant some of<br />

your favourite flowers, start an<br />

herb or vegetable patch, or simply<br />

pot up new indoor plants. Physical<br />

gardening, if you are able, provides<br />

endurance, flexibility, and strength.<br />

Yoga is good for our mental and<br />

physical health. Yoga can calm<br />

our nervous system, help with<br />

depression, and reduce muscle<br />

tension. You do not have to leave<br />

home to attend a class – you can<br />

install a yoga app on your phone<br />

and practice at home. Chair yoga is<br />

another option. A few minutes a day<br />

can produce positive effects.<br />

Writing is one of the simplest<br />

hobbies and all you need is a<br />

pen and paper. You can write<br />

how you feel every day, write<br />

short stories, poetry<br />

and maybe even a book.<br />

Whether your hobby is creative,<br />

academic or something personal,<br />

it should be meaningful and<br />

enjoyable. The main goal of a hobby<br />

is that it gives you the opportunity<br />

to express yourself and relax at the<br />

same time. Always be on the lookout<br />

for new interests and hobbies.<br />

The more your mind works the<br />

more healthy it will stay.<br />


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


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






<strong>MSWA</strong> Client & Volunteer,<br />

Margaret Wells.<br />

As she approaches both her 80th birthday and her ten years of voluntary service for <strong>MSWA</strong>,<br />

Margaret Wells reflects on the two things that have kept her positive over the years: keeping<br />

busy (with hobbies and volunteering) and caring for others.<br />

From 1970, Margaret worked for<br />

three decades as a boarding school<br />

housemistress, seeing to the<br />

practical and emotional wellbeing<br />

of innumerable teenagers.<br />

She started in Geraldton, spending<br />

19 years in a boys’ boarding house,<br />

the John Frewer Hostel. She<br />

later moved to Perth and spent<br />

three years at Iona Presentation<br />

College, and finally, 12 years at<br />

Penrhos College.<br />

Throughout these 21 years in Perth,<br />

Margaret was also a voluntary tour<br />

guide for Burswood Park Heritage<br />

Trail, regaling visitors with stories<br />

of the dozen bronze sculptures<br />

and other public works and<br />

landmarks that are peppered along<br />

the riverfront.<br />



It was in 2000, when Margaret was<br />

aged 59, that she was diagnosed<br />

with multiple sclerosis.<br />

“I’d been experiencing symptoms<br />

many, many years before diagnosis,”<br />

recalls Margaret. “They were<br />

arthritis-like symptoms. But I knew<br />

myself it was more than that.<br />

“When I was diagnosed with MS, I<br />

knew absolutely nothing about it. I<br />

didn’t know anyone with MS back<br />

then. It was a bit of a shock, but<br />

at the same time a relief to know<br />

something was wrong – to have it<br />

confirmed.<br />

“My GP sent me to the MS Society<br />

(now <strong>MSWA</strong>). I had a chat to the<br />

nurse and went to a few events for<br />

those who are newly diagnosed.”<br />

Margaret was still working at the<br />

time, so started going along to a<br />

‘workers after dark’ support group<br />

at the <strong>MSWA</strong> Wilson Services Centre<br />

once a month. “We’d chat about<br />

MS and we’d each take something<br />

for dinner.”<br />


Margaret retired from her boarding<br />

school career a couple of years after<br />

diagnosis. “I was starting to feel<br />

fatigued, going up and down those<br />

stairs. You know when enough’s<br />

enough. If you’re smart you retire<br />

on a high.”<br />

A story Margaret often tells people<br />

involves her life-long desire to<br />

visit New Zealand. “The day I was<br />

diagnosed, I came out of the<br />

neurologist’s office and thought ‘I<br />

might not be able to walk someday’.<br />

I went straight to the travel agent<br />

and booked a trip to New Zealand!<br />

“I’ve always kept that determination<br />

– that this isn’t going to beat me.”<br />

Margaret’s travels continued into<br />

her sixties and seventies, enjoying<br />

bus tours in the UK, Europe<br />

and Canada.<br />

“I’ve been one of the lucky ones,”<br />

she reflects. “My condition didn’t<br />

deteriorate over the years. I chose<br />

not to start medication. I thought,<br />

‘I’ve managed with this for so many<br />

years, I think I can keep going’.”<br />

Margaret does struggle with fatigue<br />

and pins and needles, but says it’s<br />

manageable.<br />

“I looked after all the kids in boarding<br />

houses with these symptoms and I<br />

coped. I’m still going, still able to do<br />

things.”<br />

She enjoys spending time with her<br />

family (she has five grandchildren<br />

and five great-grandchildren,<br />

whom she adores).<br />

“My twin granddaughters turned<br />

21 this year. Their brother, the<br />

youngest, turned 15 yesterday. We<br />

celebrated over breakfast; my son<br />

cooks a mean breakfast!”<br />

Another activity Margaret enjoys<br />

is her RSLWA Poppy Ladies craft<br />

group. She recalls 2018 when the<br />

group knitted 62,000 handcrafted<br />

red poppies that were placed on the<br />

lawns at Kings Park for the 100th<br />

anniversary of Armistice Day.<br />

“I also go to a walking club, we walk<br />

through Carousel Shopping Centre<br />

at 8.30am once a week. I do Prime<br />

Movers and gardening too.<br />

“I’m 80 next month, so I should<br />

probably wind down a little bit!”<br />

Margaret’s neurological condition<br />

remains stable and she values the<br />

difference <strong>MSWA</strong>’s physiotherapy<br />

team have made.<br />

“We’ve a great group at<br />

hydrotherapy on a Monday. We stay<br />

for lunch and a cup of tea. We’re all<br />

tired from the session and we chat<br />

about how we’re feeling, which can<br />

be just as helpful as the physical<br />

therapy. It’s good to be in touch<br />

with people who know how you<br />

feel, what you’re going through.”<br />

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

In 2011, Margaret began volunteering<br />

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

“I had to give up golf, and I was<br />

looking for something else to do. An<br />

<strong>MSWA</strong> occupational therapist came<br />

out to advise me about handrails<br />

in my new bathroom and she<br />

mentioned volunteering at <strong>MSWA</strong>.<br />

“I thought ‘I don’t know when I’ll<br />

need a bit more help along the<br />

way’. It’s been my way of paying it<br />

forward.”<br />

Margaret began in the mail room,<br />

putting leaflets into envelopes, and<br />

soon moved to assisting with the<br />

weekly Outreach group.<br />

“It’ll be 10 years next week. Making<br />

morning teas and cuppas for 10<br />

years!”<br />


Margaret explains how helping<br />

others is what has got her through<br />

the difficult times.<br />

“My saving grace was my twin<br />

granddaughters, Tayla and Paige.<br />

They were born in May and I was<br />

diagnosed in July. My son and his<br />

wife were battling with two babies,<br />

so I decided to be there for them as<br />

much as possible and threw myself<br />

into helping them.<br />

“The diagnosis didn’t bother me<br />

so much because I kept telling<br />

myself ‘these little ones need me<br />

now’. That’s how I got through the<br />

first year.”<br />

She explains that she doesn’t get<br />

low, just very tired.<br />

“I’ve got to say to myself ‘stop’ and<br />

have a few days off. I know when<br />

to stop. I think that’s important.<br />

Keep people around you and keep<br />

busy if you can. I’m ever so grateful<br />

my condition has remained stable.<br />

I hold onto that.”<br />



2020 <strong>MSWA</strong> CLIENT SATISFACTION<br />

<strong>MSWA</strong> invited Clients who received at least one service from us to provide feedback. We asked them about<br />

their satisfaction with services, likelihood to recommend, and overall experiences with <strong>MSWA</strong> in a year that was<br />

impacted by a global pandemic. We are thankful for those who took part as the results help us understand the<br />

needs of our Clients better and improve our performance.<br />


Dissatisfied<br />

7%<br />

Very Dissatisfied<br />

3%<br />

Accommodation<br />

100%<br />

Respite<br />

94%<br />

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

2019 92%<br />

2019 88%<br />

Satisfied<br />

36%<br />

Very<br />

Satisfied<br />

54%<br />

90%<br />

Client<br />

Relationship<br />

Coordinator<br />

Client<br />

Liaison<br />

Coordinator<br />

2019 92%<br />

91%<br />

94%<br />

New in 2020<br />

New in 2020<br />

<strong>MSWA</strong> EXCCEDS EXPECTATIONS<br />

31%<br />

40%<br />

2019<br />

CLIENTS OF <strong>MSWA</strong> FEEL<br />

No<br />

Sometimes<br />

Yes<br />

NET<br />

Agree<br />

Respected 97%<br />

Valued 92%<br />

Listened to 94%<br />


20 0 20<br />

% of <strong>MSWA</strong> Clients<br />

Promoters are loyal and likely to repurchase; Passives are susceptible to competitors;<br />

Detractors require proactive outreach to mitigate brand damage.<br />

40 60 80 100<br />

Clients were asked how likely they would be to recommend <strong>MSWA</strong> to others on a scale of 0 to 10<br />

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

+43<br />

+45<br />

2019<br />

80 % of <strong>MSWA</strong> Clients<br />

60<br />

40<br />

20<br />

0<br />

15<br />

17<br />

Detractors<br />

(0-6)<br />

25<br />

23<br />

Passives<br />

(7-8)<br />

2019<br />

60<br />

60<br />

Promoters<br />

(9-10)<br />

Reasons for recommending <strong>MSWA</strong>:<br />

• Caring and helpful staff<br />

• Great service<br />

• Professionalism<br />

Reasons for not recommending <strong>MSWA</strong>:<br />

• Quality of services not<br />

meeting expectations<br />

• Lack of communication<br />

and engagement<br />

Net Promoter Score = % Promoters – % Detractors<br />




Very Dissatisfied Dissatisfied<br />

Satisfied Very Satisfied<br />

NET<br />

Satisfied<br />

Physiotherapy 97%<br />

Counselling 98%<br />

Community Support 91%<br />

Occupational Therapy 93%<br />


Strongly Disagree (1) + 2 3 + 4 5 + 6<br />

7 + 8 9 + Strongly Agree (10)<br />

I was happy<br />

with <strong>MSWA</strong>’s<br />

methods of<br />

communication<br />

Mean /10<br />

7.8<br />

Nursing 91%<br />

Speech Pathology 94%<br />

Dietetics 98%<br />

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

handling<br />

Clients’<br />

needs well<br />

7.7<br />

Social Welfare 93%<br />

40 20 0 20 40 60 80 100<br />

% of <strong>MSWA</strong> Clients using a service<br />

40 20 0 20 40 60 80 100<br />

% of <strong>MSWA</strong> Clients<br />

Mean /10<br />



Very Dissatisfied Dissatisfied<br />

Satisfied Very Satisfied<br />

NET<br />

Satisfied<br />

Physiotherapy 97%<br />

Counselling 98%<br />

I felt supported<br />

as an <strong>MSWA</strong><br />

Client during<br />

this time<br />

The frequency of<br />

communication<br />

from <strong>MSWA</strong> was<br />

adequate<br />

7.7<br />

7.6<br />

Nursing 94%<br />

Occupational Therapy 97%<br />

Speech Pathology 96%<br />

Dietetics 98%<br />

Social Welfare 89%<br />



Very Dissatisfied Dissatisfied<br />

Satisfied Very Satisfied<br />

NET<br />

Satisfied<br />

Counselling 100%<br />

Speech Pathology 94%<br />

Outreach<br />

(opening hours)<br />

40 20 0 20 40 60 80 100<br />

% of <strong>MSWA</strong> Clients using a service<br />

97%<br />

Physiotherapy 92%<br />

Occupational Therapy 92%<br />

Nursing 90%<br />

Dietetics 93%<br />

Social Welfare 88%<br />

40 20 0 20 40 60 80 100<br />

% of <strong>MSWA</strong> Clients using a service<br />

40 20 0 20 40 60 80 100<br />

% of <strong>MSWA</strong> Clients<br />



Online Phone TOTAL<br />

Service n= % n= % n= %<br />

Physiotherapy 161 68% 106 69% 267 68%<br />

Nursing 129 54% 68 44% 197 50%<br />

Occupational Therapy 90 38% 65 42% 155 40%<br />

Community Support 80 34% 74 48% 154 39%<br />

Social Welfare 83 35% 45 29% 128 33%<br />

Support Coordination 66 28% 38 25% 104 27%<br />

Counselling 65 27% 20 13% 85 22%<br />

Speech Pathology 50 21% 42 27% 92 24%<br />

Outreach 36 15% 37 24% 73 19%<br />

Residential Respite 12 5% 5 3% 17 4%<br />

Accommodation 11 5% 23 15% 34 9%<br />

TOTAL 237 61% 154 39% 391 100%<br />

Age:<br />

18-39 5%<br />

40-49 13%<br />

50-64 44%<br />

65+ 38%<br />

Location:<br />

Metro 87%<br />

Regional 26%<br />

Condition:<br />

MS 77%<br />

ONC 23%<br />

Tenure:<br />

Less than<br />

a year 8%<br />

More than<br />

a year 92%<br />

Gender:<br />

Female 70%<br />

Male 30%<br />





<strong>MSWA</strong> Rockingham Client, Charles Van Niekerk, greatly attests to the benefits of boxing in<br />

managing his Parkinson’s symptoms – both physical and cognitive. So much so, that he and<br />

his family were inspired to hold a community fundraiser to enable <strong>MSWA</strong> to purchase a new<br />

Fightmaster for one of our Services Centres.<br />

For World Parkinson’s Day <strong>2021</strong>,<br />

Charles’ wife Nola and his two<br />

sisters-in-law cooked large quantities<br />

of a delicious South African street<br />

food dish they grew up with called<br />

‘bunny chow’: a hollowed out loaf of<br />

bread filled with bean curry, chicken<br />

curry or lamb curry.<br />

Friends and family flocked to<br />

Charles’ and Nola’s Success home<br />

to buy themselves a Saturdaynight-takeaway-to-remember.<br />

The amount raised was an<br />

incredible $1,650.<br />

“We didn’t expect to make that<br />

amount,” says Charles. “Nola was<br />

saying that if we make five or six<br />

hundred dollars we’ll be happy.”<br />

But their friends and family turned<br />

up in droves to show their support.<br />

<strong>MSWA</strong>’s Physiotherapy Manager,<br />

James Beckett – who himself<br />

attended the event – says he is<br />

thrilled that their fundraising efforts<br />

have allowed him to purchase<br />

a further Fightmaster boxing<br />

machine for the benefit of people<br />

living with Parkinson’s in WA.<br />

<strong>MSWA</strong> Client, Charles Van Niekerk, and <strong>MSWA</strong> Physiotherapy Manager,<br />

James Beckett, with the Fightmaster boxing machine.<br />

Charles too is delighted at<br />

the outcome. “It’s a cause<br />

that is very important to me.<br />

Nola and I really appreciate<br />

everyone who came along to<br />

our fundraiser.”<br />

Fightmasters are currently available<br />

to <strong>MSWA</strong> Clients who attend<br />

physiotherapy in Rockingham,<br />

Kelmscott, Butler, Beechboro and<br />

now – thanks to Charles and Nola<br />

– Clients in Albany will have access<br />

when the spacious new Services<br />

Centre opens next year.<br />




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



<strong>MSWA</strong> has been providing massage therapy for over 20 years. There is overwhelming evidence<br />

in support of massage being effective in helping people manage their disability.<br />

The majority and most robust<br />

evidence is in the management<br />

of pain, a common complaint<br />

of people with neurological<br />

conditions. There is also growing<br />

evidence that massage has a<br />

positive effect on balance, stability,<br />

mobility (specifically, improved gait<br />

speed) and reduction of disability.<br />

Through its therapeutic benefits,<br />

massage can promote independence<br />

and help people with a disability<br />

participate in work and within their<br />

communities. These outcomes are<br />

also amongst the most common that<br />

people list as being their overarching<br />

NDIS plan goals.<br />

At <strong>MSWA</strong> a typical massage<br />

session is from 30 minutes to 1<br />

hour. Massage techniques, areas<br />

of focus and number of sessions<br />

are guided by a Client’s long-term<br />

goals and assessment findings.<br />

These treatments often occur in<br />

combination with other therapies<br />

(eg physiotherapy) to better help<br />

clients achieve their goals. Clients<br />

are assessed at the time of their first<br />

appointment. This ensures that the<br />

service is not only one that the Client<br />

wants, but also one that is deemed<br />

beneficial to their symptoms and<br />

condition.<br />

As massage is not currently<br />

funded through the NDIS,<br />

we offer massage to all Clients<br />

on a fee-for-service basis<br />

through our highly qualified<br />

therapists. Appointments of<br />

15 to 60 minutes’ duration<br />

can be booked subject to<br />

availability. Please contact<br />

your Physiotherapist or<br />

Client Liaison Coordinator<br />

for more information.<br />



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

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




There are 24 hours in a day. Out of 8,760 hours of the year, a<br />

person with movement problems will spend approximately<br />

3,640 hours in bed.*<br />

Good sleep positioning is important.<br />

Once the hips and knees lose the<br />

ability to straighten fully, the legs<br />

will adopt an avoidable position<br />

with either the knees together,<br />

the knees out to the side, or a<br />

‘windswept’ position with both<br />

knees to one side.<br />

Maintaining or improving sleep<br />

quality and quantity are equally<br />

as important as maintaining an<br />

effective night time position. A<br />

good position is usually more<br />

symmetrical, more supportive, and<br />

with less risk of pressure. Lying on<br />

your back in a supportive position,<br />

compared to lying unsupported on<br />

your side allows the force of gravity<br />

to be used in positive manner to<br />

keep your spine in neutral and to<br />

gently stretch your knees and hips.<br />

Night time positioning<br />

equipment needs to<br />

be simple in order to<br />

be effective.<br />

The <strong>MSWA</strong> OT team has recently<br />

been approved to purchase the<br />

Simple Stuff Works Positioning<br />

System which is available to trial.<br />

The kit consists of two layers of nonslip<br />

mesh which cover the mattress<br />

and supports are placed in between<br />

these layers to keep the person<br />

comfortable and well positioned.<br />

Some people may need support<br />

to correct established problems<br />

such as chest rotation – this is<br />

easily done using the Simple Stuff<br />

Works System.<br />

Temperature control when using<br />

night time positioning equipment<br />

can be complicated. However, the<br />

Simple Stuff Works Positioning<br />

System aims to address this by<br />

providing breathable, temperate<br />

fibres which wick away perspiration.<br />

The mesh allows air to circulate to<br />

maintain a neutral environment for<br />

temperature.<br />

Speak to your Occupational<br />

Therapist today about trialling<br />

this positioning equipment and a<br />

range of pillows to see if this would<br />

suit you.<br />

* Source: Simple Stuff Works<br />

Associates, 2015<br />






The Occupational Therapy team are excited to announce a new service for eligible NDIS Clients.<br />

We have been trained and can now assist our NDIS Clients to transition into Specialist Disability<br />

Accommodation (SDA).<br />

SDA is a form of housing that is<br />

specifically designed to support<br />

Clients to receive the support that<br />

they need to live in the community.<br />

There are different housing types<br />

that our occupational therapists<br />

can recommend, such as:<br />

/ high physical support (housing that<br />

has been designed to incorporate<br />

high level of physical access),<br />

/ fully accessible (appropriate for<br />

Clients that have high physical<br />

needs),<br />

/ robust (housing that is made out<br />

of strong materials and requires<br />

less maintenance to reduce risk to<br />

the participant and community),<br />

/ improved liveability (housing<br />

with reasonable level of physical<br />

access).<br />

Our occupational therapists work<br />

with you to assess your needs<br />

and current home environment<br />

to determine the best housing<br />

and support options for yourself<br />

and your family. It is important to<br />

us to ensure that everyone has<br />

the opportunity to live in a safe,<br />

comfortable environment that<br />

meets their expectations and<br />

improves their quality of life.<br />

To enquire about eligibility for an<br />

SDA assessment, please contact<br />

your Client Liaison Coordinator<br />

(CLC) or your Support Coordinator<br />

for a referral to the OT department.<br />







The <strong>MSWA</strong> Stationary Cycle Challenge is a cycling challenge<br />

completed on a stationary bike over an 8-week period,<br />

concluding the week of the <strong>MSWA</strong> Ocean Ride event.<br />

As an <strong>MSWA</strong> Client, you can register for the challenge and<br />

track your distance on a stationary bike as part of your weekly<br />

physiotherapy routine.<br />

We offer prizes for the Highest Individual Fundraiser, Most<br />

Kilometres Ridden by an Individual, and Most Kilometres Ridden<br />

by a Team (they get to host the perpetual shield for the year!)<br />

How to get involved:<br />

1. Registrations open Monday, 23 August <strong>2021</strong><br />

2. Sign up for FREE with your physio or visit at<br />

<strong>MSWA</strong>OceanRide.org.au<br />

3. Ride between Monday, 27 September <strong>2021</strong> and Friday, 19<br />

November <strong>2021</strong> during your weekly physiotherapy sessions.<br />

4. Make a difference for <strong>MSWA</strong>!<br />

For enquiries please contact events@mswa.org.au<br />

or call 6454 3131<br />

“For anyone else who'd like to<br />

give the <strong>MSWA</strong> Stationary Cycle<br />

Challenge a go, I would say do it!<br />

It's a fabulous way to exercise and<br />

the funds it raises goes to a great<br />

cause – <strong>MSWA</strong>.”<br />

Liz Elliot, <strong>MSWA</strong> Client<br />

This year will be Liz Elliot’s third<br />

<strong>MSWA</strong> Stationary Cycle Challenge.<br />

Liz lives with an acquired brain<br />

injury – the result of a grade three<br />

brain tumour she was diagnosed<br />

with in 2016. <strong>MSWA</strong> has been<br />

heavily involved in her rehabilitation<br />

and the <strong>MSWA</strong> Stationary Cycle<br />

Challenge forms part of her goal to<br />

return to cycling.<br />



VOLUNTEER LUNCHEON <strong>2021</strong><br />

Each year at our Volunteer Luncheon, we recognise some of our volunteers for their invaluable<br />

contribution to <strong>MSWA</strong>. This year, we were pleased to give special thanks the following<br />

volunteers for their service:<br />

Chrystal Ling<br />

Chrystal does wonderful work<br />

supporting our residents over the<br />

weekend, spending time with them<br />

and making the day special. The<br />

staff and management appreciate<br />

Chrystal on many levels for making<br />

a difference in residents’ lives.<br />

John and Sylvia Griffith<br />

Beautiful gardens take a lot of work<br />

to maintain, and this is what John<br />

and Sylvia do for us at Fern River.<br />

They are a true team, and together<br />

they make a massive difference at<br />

Fern River, improving and making<br />

our gardens colourful and beautiful.<br />

Commended by: Danuta Figurska,<br />

Manager - Fern River<br />

Murray Newman<br />

For Murray nothing is too much<br />

trouble, and he has been invaluable<br />

helping out with repairs, gardening,<br />

putting up shelves and hanging<br />

pictures, carrying out monthly<br />

inspections on our van, and doing<br />

odd jobs around the facility.<br />

Commended by: Chris Rush,<br />

Manager - Butler Accommodation<br />

Endera Padmanathan<br />

Endera is reliable, hardworking<br />

and has chef quality knife skills<br />

that any cook would admire. She<br />

is so kind and helpful and has a<br />

wealth of culinary knowledge that<br />

contributes wonderfully to the food<br />

that is prepared in the kitchen.<br />

Thank you Endera for teaching us<br />

so many things.<br />

Commended by: Justine Webb,<br />

Kitchen Supervisor - Wilson<br />

Barbara Williams<br />

Barbara has helped us in the office<br />

for so many years, and she is brilliant.<br />

Barbara is a very optimistic person<br />

bringing us a pleasant atmosphere.<br />

Barbara is a patient and hard worker.<br />

She commenced volunteering at<br />

Fern River in February 2013.<br />

Commended by: Danuta Figurska,<br />

Manager - Fern River<br />

Commended by: Danuta Figurska,<br />

Manager - Fern River<br />

Peter Barnes<br />

Peter is an activities assistant who<br />

goes above and beyond for us all at<br />

Outreach in Beechboro. Peter never<br />

misses a Friday, he puts a smile<br />

on absolutely everyone's face and<br />

our team would not be complete<br />

without him.<br />

Commended by: Chrystal Ruthven,<br />

Outreach Coordinator Beechboro<br />


Andrea Donatti<br />

Andrea is one of our dedicated<br />

and reliable Peer Phone Support<br />

volunteers who has been<br />

supporting some of our Clients.<br />

Andrea is an <strong>MSWA</strong> Client which<br />

makes her very relatable when<br />

speaking to others who have MS. I<br />

am very appreciative and grateful<br />

to have Andrea working with us and<br />

helping our <strong>MSWA</strong> community feel<br />

heard, seen and supported.<br />

Commended by: Dajana Tesevic,<br />

Counsellor<br />

Gillian Rawlings<br />

Gillian is new to the team at<br />

Rockingham Outreach. She works in<br />

the kitchen on a Wednesday, which<br />

is a new day for Outreach, and her<br />

volunteering has enabled a lunch to<br />

be offered to our participants. Her<br />

enthusiasm and friendly nature is<br />

to be commended. Gillian is always<br />

willing to oblige no matter what<br />

the task.<br />

Commended by: Peta McCormack-<br />

Luckins, Outreach Coordinator -<br />

Rockingham<br />

Meg Gillespie<br />

Meg works two days a week in the<br />

Wilson kitchen. She is extremely<br />

reliable and always makes an effort<br />

to be friendly with Clients, staff and<br />

other volunteers. Many thanks from<br />

your team, Meg.<br />

Commended by: Justine Webb,<br />

Kitchen Supervisor - Wilson<br />

Anju Shukla<br />

Anju commenced volunteering<br />

a few months ago in the Finance<br />

team and all her help and effort is<br />

really appreciated. It is a pleasure<br />

to work with Anju. She is a team<br />

player, friendly and keen to learn.<br />

She always offers me help if I need<br />

it. She has a positive work attitude<br />

and many qualities that are very<br />

uplifting in the workplace.<br />

Commended by: Sooyian Yap,<br />

Finance Officer<br />

Margaret Wells<br />

Margaret started volunteering at<br />

a time when many are planning<br />

retirement. In August, she reaches<br />

10 years of service in volunteering.<br />

Outreach would certainly not run<br />

as smoothly each week if it wasn’t<br />

for Margaret. Outreach staff and<br />

Clients are enriched by Margaret’s<br />

presence each week and for this we<br />

are very thankful for everything she<br />

does for us.<br />

Commended by: Zuraini Hussain,<br />

Outreach Coordinator - Wilson<br />


Hi there! I’m Mala Padmanathan, the new Volunteer and Camps<br />

Coordinator. Interestingly, my journey with <strong>MSWA</strong> started as a<br />

volunteer at Wilson Outreach. After a few months, I decided I<br />

enjoyed it enough to want to stay.<br />

For the last five years, I’ve been a Recreation Support Worker<br />

with <strong>MSWA</strong>, working at some of our facilities including Wilson,<br />

Fern River and Hamilton Hill.<br />

I’m now on a new journey in a new role and am looking forward<br />

to meeting each of you in the weeks to come.<br />

If you or someone you know has an interest in volunteering or<br />

attending an <strong>MSWA</strong> Camp, you can contact me on 6454 3184.<br />





At Margaret Doody House Respite in City Beach we endeavour to provide the most<br />

comprehensive respite experience. It is important for us to create a homely environment<br />

whilst ensuring we support our Clients and meet their needs during their stay with us.<br />

We also want to keep our premises<br />

and equipment well maintained.<br />

Only last month we took delivery<br />

of five new state-of-the-art Wissner<br />

Bosserhoff electric beds, replacing<br />

our well used more basic models<br />

which have served many so well<br />

over the last few years.<br />

This costly replacement of beds and<br />

mattresses has been made possible<br />

by a donation from the Soraggi<br />

family, who very kindly donated one<br />

bed and an electric recliner chair,<br />

and through the allocation of funds<br />

raised by the <strong>MSWA</strong> Ocean Ride<br />

2020 for the remaining four.<br />

We humbly thank the Soraggi<br />

family for their generous donation<br />

and of course all those <strong>MSWA</strong><br />

supporters who participated in, and<br />

donated funds to, the Ocean Ride.<br />

All the beds have been put to good<br />

use and the feedback from our<br />

Clients has been incredible.<br />

If you, or anyone you know, needs<br />

respite support or would like more<br />

information about our amazing<br />

respite facility, please contact<br />

Alimul Tasin or Adam Moore during<br />

business hours on 9385 9574.<br />

And don’t forget our Treendale<br />

Gardens respite facility in<br />

Australind, providing a break<br />

away and some country air!<br />





Here we are already eight months into the year. Time certainly whizzes by and at Wilson<br />

Outreach our Clients, volunteers and staff just seem to get busier. The pace in the atrium and<br />

Occupational Therapy room is a force to be reckoned with.<br />

Clients attend Wilson Outreach<br />

from Mondays to Thursdays. Both<br />

rooms are a hive of activity from<br />

8.30am to around 1.00pm on these<br />

days. As well as the morning tea<br />

trolley doing the rounds, at 10.00am<br />

there are always wonderful cooking<br />

aromas coming from the kitchen.<br />

Lunch is served at midday with two<br />

courses on offer for $4.00, with an<br />

amazing menu to choose from.<br />

As well as celebrating birthdays<br />

and special theme days such as<br />

St Patrick’s day, ANZAC day and<br />

Easter there have been many other<br />

exciting additions to the monthly<br />

program. On the last Thursday of<br />

every month there is the ‘Op-Shop<br />

Cafe' when morning tea is served as a<br />

fundraiser for the group. Everyone's<br />

favourite are the pumpkin scones,<br />

hot out of the oven and baked by<br />

Justine, the Wilson cook. The smell<br />

is divine around the whole building<br />

and that brings many staff along<br />

who support this every month.<br />

During the rest of the month the<br />

Op-Shop is open to both Clients and<br />

staff with all items being sold for<br />

$2.00 each. To highlight the clothes<br />

that were in the shop, Clients<br />

and staff recently participated in<br />

a fashion parade. This was held<br />

in the atrium, showcasing many<br />

glamorous items, together with<br />

scarves and handbags to match.<br />

Not forgetting shoes, which only<br />

enhanced the outfit! Purchases<br />

skyrocketed that day with many<br />

laughs to go with it.<br />

With never a dull moment at<br />

Wilson, a sports tournament was<br />

also held in May. This time it was<br />

an outside activity, for Clients,<br />

staff and volunteers. Numerous<br />

‘stations’ were set up, both under<br />

the patio and on the lawn area as<br />

a round robin tournament. Medals<br />

and participation certificates were<br />

presented before lunch and most<br />

importantly the winning team<br />

announced. Congratulations to ‘The<br />

Pink Team’, who came through with<br />

flying colours. The smiles from all<br />

the photos taken say it all: everyone<br />

was a winner that day.<br />

Well done to Zuraini and her team<br />

for such a fantastic program thus far.<br />

Here's to everyone enjoying the rest<br />

of the year when in attendance at<br />

Wilson Outreach. If you are reading<br />

this and feel Outreach is a place you<br />

would like to visit, please contact<br />

Nicola Ryan, Senior Outreach<br />

Coordinator or Zuraini Hussain,<br />

Wilson Outreach Coordinator,<br />

on 9365 4830.<br />






THE<br />


OF PETS<br />

Anyone who has ever owned a pet will agree that animals are a great source of unconditional<br />

love and support. But, for an individual with chronic illness, a furry friend can provide much<br />

more than faithful companionship and a good cuddle. Studies show that animals can help<br />

with everything from lowering stress and blood pressure to battling depression and healing<br />

chronic pain.<br />

Here are some of the benefits:<br />

Pets reduce stress<br />

Many people feel stress. Research<br />

shows that just patting a pet can<br />

ease stress and reduce your blood<br />

pressure. Even watching fish<br />

swimming in an aquarium reduces<br />

stress as you relax and practice<br />

mindfulness.<br />

Pets provide companionship<br />

Pets can be affectionate, accepting,<br />

loyal, honest, and consistent. If you<br />

feel isolated with little support, a<br />

pet can help reduce feelings of<br />

loneliness and isolation.<br />

Pets help fulfil the human need<br />

to touch<br />

Most people feel better when they<br />

have physical contact with others.<br />

Simply patting a pet can lower your<br />

heart rate.<br />

Pets require routine and<br />

organisation<br />

Most pets require a routine of<br />

feeding, cleaning and exercise.<br />

This can give you purpose and<br />

motivation which can help your<br />

self-esteem, wellbeing and mental<br />

health.<br />

Pets provide a sense of purpose<br />

A pet can provide you with a sense<br />

of purpose, which helps improve<br />

mental health conditions like<br />

depression and anxiety.<br />

Pets increase your<br />

social interaction<br />

Pets create opportunities for<br />

social interaction as pet-friendly<br />

events, beaches or parks can help<br />

increase your social network. If<br />

you are uncomfortable with social<br />

interactions, your pet can be your<br />

own special ’support person’, as<br />

it is often easier to face difficult<br />

situations when not alone. Not to<br />

mention the social interaction with<br />

your animal, which at times can be<br />

just as, if not more, nourishing than<br />

interacting with humans.<br />

Pets improve your fitness<br />

(particularly dog owners)<br />

If you own a dog, they need regular<br />

walks, and this exercise is good<br />

for you too. Exercise, like walking,<br />

has many benefits for your mental<br />

health and wellbeing. You can also<br />

use the time walking your dog to<br />

improve your fitness and make the<br />

most of the outdoors to help you<br />

further develop mindfulness and<br />

relaxation. The simple joy a dog<br />

exudes while on their walk can be<br />

contagious and mindfully engage<br />

you in the moment.<br />

Below is the link to the HABRI<br />

(Human Animal Bond Research<br />

Institute). The short videos are<br />

amusing:<br />

habri.org/the-pet-effect/<br />


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


“We adopted Toby from the RSPCA four years ago and we<br />

were so lucky to find him, he has honestly been a lifesaver to<br />

me. Toby is a Border Collie cross, he is very gentle and follows<br />

me everywhere. He always senses when I am feeling down or<br />

unwell and will come and lay or sit beside me. I am diabetic<br />

and he even senses when my blood sugar is getting low, he<br />

will come and nudge me to tell me something is wrong. I have<br />

no idea how he learnt to do that! If my husband is working I<br />

take Toby for a short walk, it makes me get out of the house<br />

and have some exercise even when I don’t feel like it. He is my<br />

friend, my companion and my comforter.<br />


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

I would encourage anyone who is thinking of getting a dog<br />

to go for it. Choose one who is suited to your personality and<br />

lifestyle and you will have a friend and a companion in life.”<br />



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

where we can improve.<br />

You can raise a concern or<br />

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

staff member has provided by:<br />

/ Talking to the coordinator of<br />

your services<br />

/ Telephoning the Complaints<br />

Liaison and Compliance<br />

Coordinator, Michelle John,<br />

on 6454 3146.<br />

/ Emailing<br />

feedback@mswa.org.au<br />

/ Writing to Quality and<br />

Compliance; Locked Bag 2,<br />

BENTLEY DC 6983.<br />

Please tell us:<br />

/ What happened<br />

/ When it happened<br />

/ Who was involved<br />

/ What you would like to see<br />

occur as a result of sharing your<br />

feedback<br />

All feedback is reviewed, and<br />

complaints investigated in a timely<br />

manner with the team responsible<br />

for the service.<br />

Our goal is to achieve a positive<br />

outcome for all people involved<br />

and improve the quality of the care<br />

and services provided. You will be<br />

included in the process and the<br />

outcomes shared with you.<br />

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

have support from an advocate at<br />

any point in a complaint process.<br />

The Complaints Liaison and<br />

Compliance Coordinator can help<br />

you to access an advocacy service<br />

if you wish.<br />




WEST.<br />


Whether you or a loved one need a break from daily routine, we have a range of rooms<br />

with 24-hour care at <strong>MSWA</strong> Treendale Gardens Respite for a much-needed break.<br />

Located next to the respite facility is a wonderfully appointed family holiday unit, where<br />

families can get away from regular routines whilst accessing support for their loved ones.<br />

To find out more please contact us on 9725 9994 or treendale@mswa.org.au

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