MSWA Bulletin Winter 2020

Telehealth at MSWA, Feedback from Customer survey, Eating mindfully, Research roundup

Telehealth at MSWA, Feedback from Customer survey, Eating mindfully, Research roundup


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

<strong>Winter</strong> <strong>2020</strong><br />

mswa.org.au<br />

Wendy<br />

Diane<br />

Lisa<br />

Rebekah<br />

Hamilton Hill<br />

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



INSIDE<br />

Brett<br />

/ Telehealth at <strong>MSWA</strong><br />

/ Feedback from<br />

Customer Survey<br />

Occupational Therapy<br />

/ Eating Mindfully<br />

/ Research Roundup



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, Chris Rush 9385 9574<br />


Manager, Danuta Figurska 9356 2747<br />


Manager, Jayne O’Sullivan 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 />

General feedback or complaints please<br />

contact Liz Stewart 6454 3173 or<br />

feedback@mswa.org.au<br />


Greg Brotherson (Editor), Ros Harman<br />

(Guest Editor), Marcus Stafford (CEO),<br />

Paul Cavanagh, Sue Shapland,<br />

Nicola Washington, Libby Cassidy,<br />

Jamey Claffey, Carol Chong,<br />

Aileen Ward and Geoff Hutchinson.<br />

The Editor welcomes unsolicited submissions.<br />

All articles are subject to a reviewing process.<br />

The views expressed are those of the authors<br />

and do not necessarily reflect the view of<br />

<strong>MSWA</strong>’s staff, advisors, directors or officers.<br />

Our MS nurses are usually the first point of contact after the neurologist’s diagnosis of MS.<br />



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

and function.<br />



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

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

ILISSA LIEW, MANAGER: 9365 4804 OR OT DEPARTMENT: 9365 4888<br />


Our Speech Pathologists provide support by assessing, diagnosing and creating<br />

individualised treatment programs for Members who experience swallowing and/or<br />

communication difficulties.<br />

PAMELA WINDRAM, MANAGER: 6454 3140<br />


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

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

PAMELA WINDRAM, MANAGER: 6454 3140<br />


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

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

about your life. We have a Peer Support & Health Education Coordinator who organises<br />

peer connection & events and supports health and wellness education services.<br />




Social Welfare Officers assist Members 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 with<br />

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

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

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

AILEEN WARD, MANAGER: 9365 4851<br />


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

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

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



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

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

break from daily routines, and strengthen friendships and support networks.<br />



LETTER FROM THE EDITOR. ............... 3<br />

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


AND RESIDENTIAL OPTIONS . .............. 5<br />


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

<strong>MSWA</strong> RESEARCH CONTRIBUTIONS. .......... 7<br />

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

HAVE YOU HAD YOUR FLU SHOT?. ...........11<br />


EATING MINDFULLY. .................... 13<br />

PREVENTING FALLS AND TRIPS . ........... 14<br />


OF TECHNOLOGY: WHAT’S NEW?. ........... 15<br />

TELEHEALTH AT <strong>MSWA</strong>. .................. 16<br />

I MET A DOG. ......................... 17<br />


LOOKING TO THE FUTURE. ............ 18-19<br />

WHAT’S ON ....................... 20-21<br />

<strong>MSWA</strong> FEEDBACK . ..................... 21<br />


<strong>MSWA</strong>’S READATHON HEROES. .............24<br />

VOLUNTEER UPDATE. ................... 26<br />

MARY SAYS CHEERIO. ................... 27<br />


TREENDALE GARDENS NEWS . ..............28<br />

WHAT ABOUT THE CAMPS?. ............... 29<br />


COVER STORY . . . . . . . . . . . . . . . . . . . . . . . . . . 31<br />



Since our autumn <strong>Bulletin</strong> was published the main topic of conversation and news has been<br />

the Coronavirus, COVID-19. Newspapers and television programs have talked of little else<br />

and we have gone through a couple of evolutions of restrictions and rules designed to keep<br />

us safe. Fortunately, numbers in Western Australia have been relatively low, and the social<br />

distancing and travel restrictions seem to have helped.<br />

Here at <strong>MSWA</strong>, our CEO and<br />

management team have been<br />

working hard to continue providing<br />

necessary services to people<br />

with MS and other neurological<br />

conditions. Some changes have<br />

occurred: group sessions such<br />

as physio and outreach were<br />

suspended in line with Government<br />

guidelines, one-on-one sessions<br />

have continued where possible and<br />

phone contact has enabled staff to<br />

keep in touch with people. Some<br />

services have been transitioned<br />

to Telehealth, including services<br />

such as counselling, general<br />

nursing advice and speech therapy.<br />

We’ve also successfully delivered<br />

physiotherapy and occupational<br />

therapy to many Members and<br />

Clients. <strong>MSWA</strong> staff have been<br />

proactive and energetic in ensuring<br />

that the needs of people during<br />

these stressful and challenging<br />

times are being met.<br />

It is very reassuring that the people<br />

of WA continue to support <strong>MSWA</strong><br />

by purchasing raffle and lottery<br />

tickets as usual. <strong>MSWA</strong> continues<br />

to be a financially viable and<br />

successful organisation, supporting<br />

people living with multiple sclerosis<br />

and other neurological conditions.<br />

The management and staff<br />

have taken on the challenges of<br />

this pandemic with creativity,<br />

innovation, and the ongoing<br />

resolution to be a bastion of support<br />

during these trying times.<br />

The CEO provides regular updates<br />

to staff and Board directors about<br />

how we are tracking and makes sure<br />

that the communication channels<br />

are open and transparent. We can<br />

be grateful to have such a skilful<br />

and dedicated team of employees<br />

at <strong>MSWA</strong> who are ensuring the<br />

support of Members and Clients,<br />

and the ongoing success of<br />

the organisation.<br />

As interim editor of <strong>Bulletin</strong> I would<br />

like to thank everyone for their<br />

patience, adaptability and ongoing<br />

support. We look forward to a time<br />

in the future when this pandemic<br />

will have passed, and life will resume<br />

as it was before, albeit with a new<br />

awareness of how to survive tough<br />

times and support each other.<br />

Enjoy this edition and its news<br />

about what is happening at <strong>MSWA</strong>.<br />

Inside you will read updates<br />

from our various managers from<br />

different areas, and also Members’<br />

stories. Enjoy the story about Mary<br />

Cross, who recently retired as an<br />

<strong>MSWA</strong> volunteer, aged 90. All the<br />

best, Mary!<br />





OF THE CEO<br />


CEO<br />

Throughout the COVID-19<br />

restrictions of the last quarter, you<br />

may have heard me say “We’re here<br />

and we’re strong”. As we begin to<br />

emerge from the uncertainty, I shall<br />

now add the extension, “and we’re<br />

looking to the future”.<br />

Indeed, this winter feels like a type<br />

of springtime, as we welcome<br />

events back on the <strong>MSWA</strong> calendar<br />

and anticipate opening the doors of<br />

our Outreach Centres in July.<br />

The month of August is all about<br />

Readathon, which is a fantastic way<br />

to get you, and the kids in your world,<br />

reading and supporting <strong>MSWA</strong>.<br />

And a date has been confirmed for<br />

our <strong>MSWA</strong> Ocean Ride and with it<br />

the annual Members’ Ride.<br />

We’ve introduced a new Hip Hop<br />

Yoga event, which will fundraise<br />

for Customers with all neurological<br />

conditions. The inaugural session<br />

is happening virtually on a Zoom<br />

screen near you on 30 July. Be sure<br />

to read the What’s On section to<br />

find out more.<br />

On a service delivery level,<br />

solutions that were developed<br />

under the COVID-19 restrictions,<br />

such as Telehealth, are now<br />

being made permanent options,<br />

wherever appropriate. The silver<br />

lining of recent adversity was an<br />

acceleration in our approach and<br />

ability to combine technology and<br />

service, something I am pleased to<br />

continue to put at the forefront of<br />

what we do.<br />

On another forward-looking note,<br />

the latest preliminary research<br />

on COVID-19 in people with MS<br />

offers some reassurance. I’d like<br />

to share with you a message<br />

from Professor Bill Carroll AM,<br />

Neurologist, President of the World<br />

Federation of Neurology and <strong>MSWA</strong><br />

Board Member:<br />

“The evolving evidence (largely<br />

Italian based 1 ) and anecdotal<br />

evidence from other sources<br />

(respected) suggest that people<br />

with MS who are currently stable<br />

on Disease Modifying Therapies are<br />

not at increased risk of contracting<br />

COVID-19 nor is any one DMT likely<br />

to increase the same risk.<br />

“Severe COVID-19 and death relate<br />

more to the known risk factors of<br />

comorbidity and age. While this<br />

statement is based on relatively<br />

low numbers, it is encouraging<br />

and reassuring.”<br />

<strong>MSWA</strong> will continue to<br />

monitor any new research<br />

coming to light and<br />

keep you informed. If you<br />

do have any concerns<br />

about your health or your<br />

treatment regime, speak<br />

to your neurologist and/or<br />

GP for tailored advice.<br />

This quarter also marks the end of<br />

the financial year and, as ever, I will<br />

provide you with a comprehensive<br />

update on <strong>MSWA</strong>’s performance in<br />

the next edition of <strong>Bulletin</strong>, after our<br />

Annual General Meeting. However,<br />

I will say that, all things considered,<br />

we have left 2019/<strong>2020</strong> in a position<br />

of continued strength.<br />

As you know, as we continue to<br />

serve people with neurological<br />

conditions; we’re here, we’re strong<br />

and we’re looking to the future.<br />

1<br />

Lancet Neural <strong>2020</strong>, Published Online April 29, <strong>2020</strong> https://doi.org/10.1016/ S1474-4422(20)30147-2<br />









“Good luck is when opportunity<br />

meets preparation, while bad<br />

luck is when lack of preparation<br />

meets reality. ”<br />

Mario Andretti.<br />

Well we have all been through many<br />

changes and new territory since our<br />

last <strong>Bulletin</strong>! COVID-19 has been a<br />

real challenge on many fronts but<br />

overall, we have been lucky here<br />

in Australia, and in WA. One of the<br />

benefits of being an island and a<br />

long way from many places I guess!<br />

Whilst we had our ‘wings clipped’<br />

and routines disrupted to an extent<br />

most of us have never experienced,<br />

we have not had the large case<br />

numbers and levels of illness and<br />

deaths seen overseas including of<br />

course, the UK and the USA.<br />

Together, under good leadership<br />

and cooperation, with most people<br />

following Government advice, we<br />

are now starting to return to what<br />

is being termed ‘our new normal’,<br />

including the football season<br />

which has been sadly missed by<br />

most! <strong>MSWA</strong> regrettably had to<br />

cancel several of our popular events<br />

including Step Up and our annual<br />

MS Awareness Week Forum, but<br />

they will be back!<br />

The restrictions imposed led to new<br />

creativity, born out of necessity, as<br />

we turned to video conferencing<br />

and linking in by many different<br />

avenues – Zoom, Webex, Skype, etc,<br />

with <strong>MSWA</strong> staff and many GPs<br />

embracing these changes. One of<br />

the better outcomes has been some<br />

increases in these connections,<br />

as people were physically isolated<br />

from their friends and loved ones,<br />

and absence has made the heart<br />

grow fonder as we now reconnect<br />

wherever we can. There has been<br />

a large spike in home cooking and<br />

crafts, and parents have found a<br />

new respect for teachers! Hopefully<br />

some lasting good changes will<br />

remain with us beyond COVID-19.<br />

We had to close our popular respite<br />

homes for several weeks, but they<br />

are now back in operation and the<br />

staff are keen to reconnect with<br />

known customers and welcome<br />

new ones. Our accommodation<br />

facilities have had restrictions<br />

imposed, including reduced visitors,<br />

reduced community outings and<br />

the flu vaccination requirement for<br />

staff and visitors as resident and<br />

staff health and safety is paramount.<br />

We have had to delay the start<br />

of construction of our Albany<br />

facility but look forward to that<br />

commencing in 2021.<br />

The research community<br />

has been impacted, with<br />

some labs being closed<br />

and access to participants<br />

reduced, but this is now<br />

starting to ramp up<br />

again. Once again <strong>MSWA</strong><br />

is looking forward to<br />

supporting research into<br />

MS and other neurological<br />

conditions, aiming to<br />

better the record donation<br />

of $3.5 million for this year.<br />

I hope you enjoy this edition of<br />

<strong>Bulletin</strong> and that you and yours stay<br />

safe and well.<br />


MEMBER &<br />





Welcome to the winter<br />

edition of our Member &<br />

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

We have certainly been through<br />

a strange time over the past few<br />

months and one that has impacted<br />

the world in a way that no one could<br />

have predicted.<br />

I am sure you will agree that we<br />

have been lucky in Australia not to<br />

have seen the numbers that other<br />

countries have experienced with<br />

COVID-19, which has enabled us<br />

to get back to some sort of normal<br />

quicker than originally expected.<br />

The great news is that our group<br />

and social support activities have<br />

resumed, including the return of<br />

Outreach at designated Service<br />

Centres. I know our Members<br />

and our staff have missed being<br />

together and it is great to engage<br />

with everyone again, albeit at an<br />

appropriate distance.<br />

As we get back to ‘the new normal’<br />

there are some things that we will<br />

keep in place to assist with service<br />

delivery. Our online Telehealth<br />

will remain in place as an option<br />

for delivery of services where it<br />

is appropriate to do so. This will<br />

provide additional choice to you,<br />

the Customer, on how you receive<br />

your services.<br />

We have all become used to<br />

communicating in different ways<br />

through Zoom, Webex, Teams,<br />

FaceTime etc which have all<br />

proved to be great platforms to<br />

communicate across and I do<br />

not see these disappearing any<br />

time soon.<br />

Our Customer Satisfaction Survey<br />

has been analysed and the results<br />

are reported on pages 22-23. Thank<br />

you to everyone who completed<br />

the Survey. We are already working<br />

on what we can improve. One of<br />

the areas we are focused on is<br />

communication. We are committed<br />

to providing you with regular<br />

touchpoints and our Customer<br />

Engagement team will be keeping<br />

in contact with you to get your<br />

feedback and your preferences<br />

on communication.<br />

The NDIS March quarterly results<br />

summary:<br />

/ 27,780 participants have entered<br />

the scheme since July 2013. 27,379<br />

of these continue to be active.<br />

/ 12,349 active participants are<br />

receiving supports for the<br />

first time.<br />

/ In the current quarter, 3,151<br />

participants have entered<br />

the scheme.<br />

/ 6,645 plans have been reviewed<br />

this quarter.<br />

/ 3,515 access decisions have been<br />

made in the quarter, 2,828 of<br />

which met access and are still<br />

active as at 31 March <strong>2020</strong>.<br />

/ 208 (6.6%) of the new active<br />

participants this quarter<br />

identified as Indigenous, taking<br />

the total number of Indigenous<br />

participants in WA to 1,685 (6.2%).<br />

/ 365 (11.6%) of the new active<br />

participants this quarter are<br />

Culturally and Linguistically<br />

Diverse (CALD), taking the total<br />

number of CALD participants in<br />

WA to 2,265 (8.3%)<br />

/ North East Metro has the highest<br />

number of active participants<br />

(5,240), while Goldfields-Esperance<br />

has the lowest (431).<br />

The number of participants in the<br />

NDIS has grown with over 12,000<br />

receiving support for the first time<br />

which is great news. Wait times<br />

continue to be an area needing<br />

review as outlined on page 12.<br />

If you do have any questions<br />

regarding your NDIS plan please<br />

do not hesitate to contact<br />

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

team of dedicated staff are always<br />

here to help you navigate any<br />

problem or question you may have.<br />

I would like to take this opportunity<br />

to thank our Customers for being<br />

flexible and working with us over<br />

the past few months to maintain<br />

our service delivery, albeit in a<br />

different way, and to our incredible<br />

staff for their commitment, hard<br />

work and dedication.<br />

Thank you.<br />



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


Professor Sulev Kōks with Professor<br />

Carolyn Young (who designed and leads<br />

the study in the UK). Taken when she<br />

visited the Perron Institute last year.<br />

Recruitment well under way for TONiC study<br />

The Perron Institute is continuing its<br />

recruitment of people with motor<br />

neurone disease (MND) for the<br />

pilot TONiC study, a project proudly<br />

supported by <strong>MSWA</strong>.<br />

TONiC (Trajectories of Outcome<br />

in Neurological Conditions) is<br />

examining factors influencing<br />

quality of life for people with<br />

neurological conditions. It<br />

originated in the UK and is the<br />

largest study of its kind in the world.<br />

The aim is to improve services for<br />

people living with conditions such<br />

as MND by identifying quality of life<br />

aspects that are important to them,<br />

but which may be underestimated<br />

by current service provision.<br />

The WA TONiC study is led by<br />

Professor Sulev Kōks, head of<br />

Genetic Epidemiology Research<br />

at the Perron Institute and<br />

Murdoch University.<br />

With the help of the Motor<br />

Neurone Disease Association of<br />

WA in reaching out to potential<br />

participants, there has been a good<br />

response, with questionnaires sent<br />

out and some already completed<br />

and returned.<br />

“We are pleased with the initial<br />

response from patients in the<br />

community so far,” Professor Sulev<br />

Kōks said.<br />

“Feedback from participants in the<br />

pilot study will be used to tailor<br />

the questionnaire for Western<br />

Australian patients in the next stage<br />

of the project.”<br />

CEO Marcus Stafford AM said he<br />

was pleased to be able to support<br />

this important research.<br />

“Although this study is initially<br />

targeting MND, I know the team<br />

have the intention to broaden the<br />

research to include people with<br />

multiple sclerosis and possibly<br />

other neurological conditions,” said<br />

Mr Stafford.<br />

“This is fantastic. It’s<br />

great to be able to fund<br />

research that looks into a<br />

debilitating disease such<br />

as MND, and the fact the<br />

research can be extended<br />

to a wider group only<br />

makes it that much more<br />

exciting. Watch this space.”<br />

For more information on the study,<br />

please contact Leanne Jiang:<br />

leanne.jiang@perron.uwa.edu.au or<br />

see the Perron Institute and <strong>MSWA</strong><br />

Facebook pages.<br />




ROUND UP<br />





Read more at:<br />

multiplesclerosisnewstoday.com<br />

Ability to ‘Create’ Astrocytes<br />

Supports Their Damaging Role in<br />

MS, Like Diseases, Patricia Inacio PhD.<br />

A new study shows an inflammatory<br />

environment can turn astrocytes,<br />

key supportive cells for neurons,<br />

into their killers, fostering the<br />

progression of neurodegenerative<br />

diseases like MS.<br />

In a first, researchers at the<br />

New York Stem Cell Foundation,<br />

created astrocytes derived from<br />

human stem cells (hIPSCs). They<br />

then placed these cells in an<br />

inflammatory environment and<br />

observed what happened.<br />

Following inflammatory stimulation,<br />

the astrocytes become reactive,<br />

dysfunctional, and toxic, triggering<br />

neuronal death — all of which opens<br />

‘a window for the study of their role’<br />

in neurodegenerative disorders.<br />

The group, and others, look<br />

forward ‘to using our new system<br />

to further explore the intricacies of<br />

astrocyte function in Alzheimer’s,<br />

multiple sclerosis, Parkinson’s, and<br />

other diseases’ in the hope it will<br />

‘point us toward new treatment<br />

opportunities’ that might slow or<br />

prevent neurodegeneration.<br />

Australian Review Suggests<br />

‘Gut Mucus May Help Ease MS,<br />

Other Neurological Diseases,<br />

Patricia Inacio PhD.<br />

An Australian review of 113<br />

neurological, gut and microbiology<br />

studies, by researchers at the<br />

RMIT University in Melbourne,<br />

suggests tweaking the protective<br />

properties of the gut mucus, a<br />

layer lining the inside of the gut,<br />

to boost the proliferation of good<br />

bacteria potentially could halt<br />

the development of neurological<br />

disorders, like MS.<br />

The gut is lined with a mucus layer,<br />

key for a healthy gastrointestinal<br />

system, with properties adapted<br />

to each segment. In the small<br />

intestine it’s more porous, to<br />

facilitate nutrient absorption, while<br />

in the colon it becomes thicker,<br />

acting as a physical barrier against<br />

harmful bacteria but allowing the<br />

natural, beneficial community of<br />

microbes living in the gut – the gut<br />

microbiome – to thrive.<br />

The gut is innervated not only by<br />

the autonomic nervous system, but<br />

its own network of neuronal cells<br />

that regulate the functions of the<br />

gastrointestinal tract, called the<br />

enteric nervous system (ENS).<br />

Increasing evidence shows<br />

that changes in the gut and its<br />

microbiome have far-reaching<br />

implications and are commonly<br />

found in people with neurological<br />

disorders, such as autism,<br />

Parkinson’s and Alzheimer’s<br />

disease, and also MS.<br />

“Mucus is a critical protective layer<br />

that helps balance good and bad<br />

bacteria in your gut but you need<br />

just the right amount – not too little<br />

and not too much,” said Elisa Hill-<br />

Yardin in a press release.<br />

Hill-Yardin is a professor at School<br />

of Health and Biomedical Sciences,<br />

RMIT University and the study’s<br />

senior author.<br />

“Researchers have previously shown<br />

that changes to intestinal mucus<br />

affect the balance of bacteria in the<br />

gut but until now, no one has made<br />

the connection between gut mucus<br />

and the brain,” Hill-Yardin said.<br />

She believes that “microbial<br />

engineering, and tweaking the gut<br />

mucus to boost good bacteria, have<br />

potential as therapeutic options for<br />

neurological disorders.”<br />






<strong>MSWA</strong>.ORG.AU/RESEARCHUPDATE<br />


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

Cutting Edge Technologies Help<br />

Discover Unknown Cells in the<br />

Human Body.<br />

Australian scientists have<br />

discovered nine subpopulations of a<br />

subtype of B cells (a type of immune<br />

cell) which differ in people with MS<br />

compared to those who don’t have<br />

MS. They also differed in people<br />

with active MS compared to those<br />

with inactive MS.<br />

The human body is made up of<br />

many different types of cells; the<br />

exact number of types is unknown.<br />

More and more subtypes of cells<br />

are being discovered as technology<br />

improves. MS Research Australia<br />

funded researchers have been<br />

using the latest technologies,<br />

which is providing unprecedented<br />

insights into changes in particular<br />

subtypes of immune cells that<br />

occur in people with MS.<br />

The group of Sydney researchers<br />

have been studying the immune<br />

system and examining and<br />

characterising the proteins on the<br />

surface of B cells and made some<br />

exciting discoveries.<br />

These findings highlight the<br />

exciting possibilities new<br />

technologies bring, and that<br />

measuring these B cells may help us<br />

understand when a person with MS<br />

might develop active forms of the<br />

disease and how various treatments<br />

might be working, including UV<br />

radiation therapy.<br />

The group has identified previously<br />

unknown subsets of cells which<br />

correlate with MS attacks on the<br />

central nervous system, suggesting<br />

that some of these subtypes of<br />

cells are potential targets for highly<br />

targeted therapies which could<br />

impact the progression of MS.<br />

Copper Delivery as a Potential<br />

Treatment for MS, Associate<br />

Professor Peter Crouch, University<br />

of Melbourne.<br />

One of the laboratory models used<br />

to study MS is based on treating<br />

mice with a compound that binds<br />

to copper in the body, which causes<br />

loss of myelin. However, no research<br />

has yet investigated exactly how<br />

the compound causes the myelin<br />

cells to die in mice and whether this<br />

provides clues as to how myelin is<br />

damaged in MS.<br />

Using techniques previously used<br />

for his research into MND, Associate<br />

Professor Crouch will determine<br />

whether MS-affected tissue in mice<br />

and in people with MS is functionally<br />

deficient in copper.<br />

The project receives funding<br />

support from The Trish MS Research<br />

Foundation.<br />

In this study, Associate Professor<br />

Crouch will examine both the levels<br />

of the copper dependent enzymes<br />

in the tissue and their actual<br />

copper dependent enzymatic<br />

activity. Differences between these<br />

two measurements can reveal<br />

functional copper deficiency<br />

despite no change in copper levels<br />

within the tissue.<br />

This project will be the first to assess<br />

the specific activity of multiple<br />

copper dependent enzymes in<br />

a laboratory model of MS and in<br />

post-mortem tissue from people<br />

with MS. It will therefore be the<br />

first to provide clear biochemical<br />

data to indicate whether there is<br />

a link between functional copper<br />

deficiency and loss of myelin in MS.<br />

Associate Professor Peter Crouch (right)<br />

& Dr James Hilton (left), University of Melbourne.<br />




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

Preliminary research on Covid-19<br />

in people with MS in Italy offers<br />

some reassurance.<br />

People with MS who contracted<br />

COVID-19 did no worse than the<br />

general population according to<br />

preliminary results from Italy.<br />

Researchers in Italy have been<br />

collecting data to understand<br />

the relationship between MS and<br />

COVID-19, trying to understand<br />

whether having MS increases the<br />

risk of a more severe COVID-19<br />

infection, and whether taking<br />

disease modifying drugs may add<br />

any extra risk.<br />

The Italian MS Society (AISM), the<br />

Italian MS Foundation (FISM), and<br />

the MS Study Group of the Italian<br />

Neurological Society set up an<br />

online platform to record and collect<br />

data about people with MS in Italy,<br />

who were diagnosed with COVID-19<br />

or developed symptoms (suspected<br />

COVID-19). MS neurologists across<br />

Italy were asked to input data and<br />

share patient outcomes.<br />

Early results from the data collected<br />

have now been published; this<br />

includes 232 people with MS who<br />

tested positive for COVID-19 (57<br />

people) or have suspected COVID-19<br />

(175 people). Of the 232 people,<br />

211 were taking a disease<br />

modifying drug.<br />

They recorded the severity of<br />

COVID-19 in these 232 people:<br />

/ 222 (96%) had a mild infection<br />

/ 4 (2%) had a severe infection<br />

/ 6 (3%) had a critical infection<br />

Of those who were critical, one<br />

recovered and five died; those who<br />

died tended to be older (50+) and<br />

have other health conditions.<br />

It's too early to say from this data<br />

whether DMDs make a difference<br />

to COVID-19 recovery, but it does<br />

not suggest that the current DMD<br />

advice should be changed.<br />

Although this research is preliminary<br />

and the numbers are small, these<br />

results are reassuring for people<br />

with MS. They suggest that having<br />

MS doesn’t increase your likelihood<br />

of a more severe COVID-19 infection<br />

and that the majority of people with<br />

MS are likely to have a mild infection,<br />

the same as the general population.<br />


Read more at: nationalmssociety.org<br />

Plasma neurofilament light levels<br />

are associated with the risk of<br />

disability in multiple sclerosis,<br />

Ali Manouchehrinia, PhD, et al;<br />

Karolinska Institutet; Neurology<br />

May 20, <strong>2020</strong>.<br />

Higher blood levels of a molecule<br />

called neurofilament light chain<br />

(NfL) were associated with<br />

progression of disability in blood<br />

samples from 4,385 people with MS.<br />

Although further study is needed<br />

before this blood test can be used<br />

routinely to predict disease course<br />

and guide the care of individuals<br />

with MS, these findings add<br />

to growing evidence that NfL<br />

has potential as a predictive<br />

biomarker of MS disease activity<br />

and disability progression.<br />

NfL is a fragment and part of the<br />

debris that enters the spinal fluid<br />

and blood when nerve wires (axons)<br />

are damaged. Studies of NfL in the<br />

bloodstream and spinal fluid have<br />

been underway to better define<br />

how this biomarker may be used<br />

to help detect and predict disease<br />

activity and response to treatments,<br />

not only in MS but in other disorders.<br />

In this large Swedish study, 4,385<br />

people with MS from Swedish MS<br />

registries, and 1,026 people who did<br />

not have MS, had NfL blood levels<br />

tested; and the participants were<br />

followed up for five years.<br />

People with MS had significantly<br />

higher levels of NfL in their blood,<br />

compared to people without MS.<br />

Higher NfL levels were significantly<br />

associated with worsening disability<br />

during the next year and with the<br />

likelihood of reaching moderate<br />

disability (affecting daily activities<br />

but not walking ability).<br />

This large study adds to a growing<br />

body of knowledge needed to<br />

determine the best use of NfL as a<br />

biomarker for MS care, treatment<br />

decisions and clinical trials.<br />

Additional studies underway will<br />

help standardise its use and help<br />

understand how age and other<br />

health conditions impact NfL levels.<br />



HAVE YOU<br />

HAD YOUR<br />

FLU SHOT?<br />





Each winter brings the risk of flu and vaccinations are recommended for those at risk: the<br />

young, the elderly and those with existing illnesses. It has been more highly recommended<br />

by the Government this year due to the added risk of COVID-19.<br />

The vaccination is recommended<br />

annually as it wears off after three<br />

to four months; last year’s extended<br />

flu season saw some people<br />

vaccinated twice.<br />

Our Members often ask if they<br />

should have the vaccination or not.<br />

Our medical advisor Professor Bill<br />

Carroll AM offers the following<br />

comment:<br />

"There is no evidence that these<br />

vaccinations make MS worse or<br />

cause a relapse. Should a relapse<br />

occur, around the time of 'flu'<br />

vaccination it is thought to be<br />

coincidental. Occasionally people<br />

with MS having vaccinations can<br />

have a brief exacerbation of existing<br />

MS symptoms; but this is not<br />

worsening of MS. People with MS<br />

are advised to discuss this with their<br />

treating neurologist or physician as<br />

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

have the vaccination earlier rather<br />

than later to reduce the risk of<br />

contracting the flu.”<br />

Don’t forget that your GP and / or<br />

neurologist can advise you on these<br />

and other important health matters.<br />

The Government funded Health<br />

Direct website: healthdirect.gov.au/<br />

colds-and-flu-treatments is packed<br />

with health information and advice,<br />

including flu updates and tips to<br />

help reduce the spread.<br />

While it can happen any time, it's<br />

more common to catch the flu, or<br />

experience flu-like symptoms, in<br />

the colder months of the year (April<br />

to October).<br />

6 ways to fight the flu; most<br />

of which apply to preventing<br />

the spread of COVID-19 and<br />

other infections:<br />

Get your annual flu vaccination<br />

to be protected. It reduces the<br />

chances of both catching and<br />

transmitting the flu. See your GP or<br />

local pharmacy for advice.<br />

Wash your hands for 20 seconds<br />

and frequently; good hand hygiene<br />

is the best way to prevent the<br />

spread of colds and flu and other<br />

infections. Use soap and water or<br />

hand sanitiser.<br />

Cover your coughs and sneezes;<br />

this prevents the spread of infected<br />

droplets to others and surfaces.<br />

Bin your tissues; throw tissues in<br />

the bin after use and then wash<br />

your hands.<br />

Avoid sharing cups, plates, cutlery<br />

or towels with others.<br />

Self-care at home; mostly you can<br />

treat the symptoms of a mild cold<br />

or flu yourself. Most people will get<br />

better within 7-10 days without any<br />

treatment.<br />

Get plenty of rest, drink plenty of<br />

water and non-alcoholic drinks,<br />

keep warm, eat a healthy diet and<br />

avoid exposure to cigarette smoke.<br />

Your pharmacist can assist with over<br />

the counter treatments if necessary.<br />

If you live alone, let someone know<br />

you aren’t feeling well so they can<br />

keep an eye on you.<br />

See your doctor if you are unwell and<br />

experiencing high temperatures,<br />

headache, breathing difficulties or<br />

a rash, or if you are worried at all.<br />

You can speak to a registered nurse<br />

for free advice 24/7 by calling Health<br />

Direct on 1800 022 222.<br />





The introduction of the NDIS promised a modern way of<br />

providing disability funding to Australians. Its architects<br />

presented the scheme as an innovative and visionary<br />

solution to the predicament that was disability block-funding<br />

and a way of providing participants with control over their<br />

services. However, as Robert Burns once wrote, “The bestlaid<br />

schemes o' mice an' men.”<br />

While the NDIS got lots right and<br />

has quickly improved in many<br />

other areas – the NDIA’s responsive<br />

handling of the COVID-19 pandemic<br />

was impressive – one of the<br />

challenges with the scheme remains<br />

the long wait-time participants face<br />

to receive their first plan. Delays<br />

in decision-making and a lack of<br />

information are two of the most<br />

regular complaints about the NDIS,<br />

with many participants indicating<br />

they have had to wait many months<br />

for the NDIA to contact them or<br />

make a decision.<br />

The wait-time problem has been so<br />

bad that it became an election issue<br />

as the Government introduced an<br />

NDIS Participant Service Guarantee<br />

to support positive experiences<br />

with the NDIS. From 1 July <strong>2020</strong>,<br />

the Guarantee will aim for a new<br />

standard for the time it takes for<br />

the NDIS planning process. This<br />

means there will be shorter, agreed<br />

timeframes for people to receive<br />

a decision on eligibility, receive<br />

an NDIS plan and to have their<br />

plan reviewed. So good news for<br />

all, happy days and problem<br />

solved… right?<br />

Potentially yes, any focus on<br />

improving the speed and efficiency<br />

of the planning process should be<br />

applauded. However, it should also<br />

be noted that the ‘Tune Review’<br />

that proposed these changes<br />

did highlight that there may be<br />

some difficulties in achieving<br />

this new standard before July<br />

2021. So, perhaps more patience<br />

is required. Nevertheless, any<br />

focus on Customer wait-time is a<br />

positive outcome. In fact, <strong>MSWA</strong>’s<br />

NDIS team has already seen<br />

some Customers move from their<br />

eligibility assessment to planning<br />

in a matter of days, not the weeks/<br />

months that had become the norm.<br />

One word of warning would be to<br />

ensure that you are prepared for<br />

the planning meeting should it<br />

arrive sooner rather than later. We<br />

have seen some planning meetings<br />

be conducted over the phone with<br />

very little warning. If this happens<br />

to you please remember it's your<br />

planning meeting and the result<br />

will determine your services, so if<br />

you need more time, make sure you<br />

let the NDIA planner know.<br />

For our part, the <strong>MSWA</strong><br />

NDIS Team will continue to<br />

work with you to help you<br />

move through the planning<br />

process as quickly and easily<br />

as possible. However quick<br />

your planning process is,<br />

our Customer Relationship<br />

Coordinators will do their<br />

best to help and ensure you<br />

have all the information<br />

you need to achieve a<br />

positive outcome.<br />






EATING<br />



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

Would you like to enjoy your food more? Then eat mindfully!<br />

Mindful eating begins with eating<br />

slowly and without distraction.<br />

However, it goes much further<br />

than this. It engages all parts of<br />

your body, mind and heart. It<br />

brings curiosity and playfulness to<br />

food as you explore colours, tastes,<br />

scents and sounds. You develop a<br />

connection and response to food<br />

and inner cues to hunger and<br />

satisfaction. Mindful eating can<br />

replace self-criticism and shame<br />

with self-nurturing and respect<br />

for your own inner wisdom. With<br />

practice, mindful eating supports<br />

the freeing of habitual patterns of<br />

thinking, feeling and acting.<br />

Tips for eating mindfully:<br />

/ Be curious about your eating<br />

habits and without judgement.<br />

/ Begin eating mindfully for one<br />

meal per day or even one meal<br />

per week.<br />

/ Purchase produce mostly from<br />

the outside aisles of supermarkets,<br />

avoiding the centre aisles which<br />

are heavy with processed foods.<br />

/ Eat from a smaller plate to help<br />

with portion sizes.<br />

/ Check if you are eating due to an<br />

emotional hunger trigger such<br />

as stress, or a body hunger signal<br />

such as stomach growling.<br />

/ Turn off screens and reduce<br />

distractions. Focus on your meal,<br />

your own company, or those<br />

around you.<br />

/ Slow your eating down by<br />

putting down your fork between<br />

mouthfuls. Make a point of<br />

drinking slowly and pausing.<br />

/ Focus on gratitude and<br />

appreciation for the journey of<br />

what you are eating. Think about<br />

where your food has come from,<br />

how it grew and the people who<br />

helped prepare it.<br />

/ Try not to skip meals otherwise<br />

your priority will be to fill the void<br />

instead of enjoying your food.<br />

/ Chewing food thoroughly<br />

releases extra nutrients and<br />

flavours and is also kinder to our<br />

digestive system.<br />

/ Instead of finishing everything on<br />

your plate, pack leftovers.<br />

/ Eat sitting down, never on the go<br />

or standing up.<br />

Mindful eating is not a diet.<br />

It does not dictate or make<br />

you feel guilty about food<br />

choices. Instead it brings an<br />

awareness to the experience<br />

of food that is unique to you<br />

on a moment by moment<br />

basis that can support health<br />

and wellbeing and enhance<br />

the enjoyment of food by<br />

recognising our natural<br />

food cues.<br />

For additional support you can:<br />

/ Speak to your counsellor<br />

/ Download some apps such as Am<br />

I Hungry, Mindful Bite and Eat<br />

Chew Rest<br />

/ Search online ‘mindful eating<br />

Australia’ for support, information<br />

and services<br />




Falling can be a frightening experience. Many people with neurological conditions are<br />

susceptible to falls, which may occur for a number of reasons. An occupational therapist (OT)<br />

can work with you to identify some prevention strategies that may assist, including:<br />


It is important to keep walkways<br />

clear and be aware of rugs, power<br />

cords or other pieces of furniture<br />

which may cause tripping hazards.<br />

Keep commonly used items<br />

within reach, to avoid unnecessary<br />

bending or reaching.<br />


Personal alarms can be worn<br />

to ensure that you can contact<br />

assistance should you experience<br />

a fall. There are many options<br />

available including who the alarm<br />

contacts and how your wear it.<br />

An OT can assist you in finding an<br />

alarm that best suits your needs.<br />


Hazards such as steps, door frames<br />

or uneven surfaces can increase<br />

your risk of falls. An OT can assess<br />

your home environment to see if<br />

ramps or rails may be suitable and<br />

help you find the most appropriate<br />

option.<br />



It is important to keep moving to<br />

ensure your legs stay strong and<br />

conditioned. Additionally, mental<br />

wellness is important in helping you<br />

stay alert so that you can identify<br />

any potential hazards.<br />

Activities such as reading, using<br />

brain training apps and social<br />

activities can help keep you active<br />

and alert. Physiotherapists also play<br />

a key role in this area, and OTs will<br />

often work alongside your physio to<br />

assist with your physical health and<br />

mobility.<br />


If you are experiencing falls regularly,<br />

or feeling more unsteady on your<br />

feet, you may wish to consider<br />

wheeled-mobility aids such as a<br />

mobility scooter or a wheelchair.<br />

There are many factors to consider<br />

when investigating mobility<br />

devices. Your OT can work with you<br />

to ensure the most suitable device<br />

is selected.<br />



Try to remain calm. If you have<br />

spoken to an OT before, take a<br />

moment to revise your action plan<br />

before rising. It is important to keep<br />

yourself and those around you safe<br />

if you do experience a fall. An OT can<br />

provide you with strategies to help<br />

you stand from the floor safely.<br />

If you would like to discuss these<br />

strategies further, please contact<br />

the OT department on 9365 4854,<br />

and we will work with you to identify<br />

the approaches that best suit<br />

your needs.<br />


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






Communication is a fundamental human right as declared by Article 19 of the Universal<br />

Declaration of Human Rights. At <strong>MSWA</strong> Speech Pathology, we whole-heartedly agree with<br />

this and strive to ensure that all Customers of <strong>MSWA</strong> Speech Pathology are provided with<br />

best practice advances in all areas of communication.<br />

For many of our Customers, as<br />

their condition progresses, they<br />

start to communicate with AAC<br />

(Augmentative and Alternative<br />

Communication). As technology<br />

has become more advanced,<br />

devices have become more<br />

sophisticated. We endeavour to<br />

ensure that we have the most<br />

up-to-date knowledge of these<br />

devices to support those who need<br />

this technology.<br />

We have been fortunate to have<br />

Customers receive funding for<br />

a NeuroNode device by Control<br />

Bionics. The NeuroNode is a<br />

wearable switch, which connects<br />

via Bluetooth to a computer<br />

communication system. The<br />

NeuroNode’s sensors sit on the<br />

surface of the skin, located on a<br />

muscle chosen to be the switch.<br />

When the client tenses the muscle,<br />

the NeuroNode detects the EMG<br />

signal (even if you cannot see the<br />

muscle move). The muscles do not<br />

need to be functional at optimal<br />

levels as the NeuroNode responds<br />

to extremely minimal signals.<br />

The device uses either scanning<br />

or eye gaze coupled with the<br />

NeuroNode to deliver access to<br />

communication which is easier to<br />

use and allegedly less fatiguing<br />

than others in the market. Other<br />

devices which have also proven<br />

effective for our customers are<br />

the iPad Pro with head tracking<br />

and switch control, and of course<br />

eye gaze systems, which are<br />

constantly being updated and<br />

made more accessible.<br />

In addition to using the device to<br />

communicate with those in your<br />

immediate environment, these<br />

devices can be used to send text<br />

messages, access Facebook, email,<br />

YouTube, navigate the web, and<br />

control your environment (eg turn on<br />

TV/lights etc).<br />

If you want to know more about these<br />

remarkable advances in technology,<br />

please contact Speech Pathology<br />

at <strong>MSWA</strong> on 9365 4888 or via email:<br />

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






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

To remain connected to our Customers during the peak of the COVID-19 pandemic, <strong>MSWA</strong><br />

introduced Telehealth. By utilising telephone and different online platforms we have been<br />

able to maintain most services and continued to provide support during the challenging<br />

period. Telehealth is a service we will continue to use.<br />


ROB ORR – <strong>MSWA</strong> COUNSELLOR<br />

Telehealth counselling is any<br />

provision of counselling that does<br />

not occur ‘face to face’ with the<br />

counsellor and client sitting in<br />

the same room. It includes video<br />

conferencing solutions such as<br />

Skype, Zoom, Webex and FaceTime;<br />

phone calls and text; chat and<br />

email conversations. At <strong>MSWA</strong>, our<br />

Telehealth service delivery covers<br />

one-to-one counselling as well as<br />

couples, family and group sessions.<br />

There are several advantages of<br />

Telehealth counselling. The most<br />

obvious advantage currently is<br />

reducing the risk of contracting<br />

and spreading a contagious illness.<br />

COVID-19 has been the main driver,<br />

but the flu season is here so there is<br />

no better time to embrace this way<br />

of receiving services.<br />

Other advantages include accessibility,<br />

convenience, and anonymity. As<br />

Telehealth appointments typically do<br />

not require travel, they work well for<br />

clients in more remote areas, as well<br />

as Customers who have some physical<br />

limitations making travel more difficult<br />

or time consuming. They can often be<br />

scheduled at more convenient times<br />

for the same reason. Telehealth also<br />

benefits Customers who may have to<br />

overcome emotional as well as physical<br />

barriers to face-to-face counselling.<br />

Some Customers experience<br />

anxiety leaving home to attend<br />

an in-person appointment, and<br />

Telehealth also provides greater<br />

‘invisibility’ compared to an inperson<br />

counselling appointment.<br />

Customers who have speech<br />

difficulties but can type what they<br />

want to say can benefit from the<br />

alternatives of Telehealth which rely<br />

on this medium –- such as text, chat<br />

and email.<br />

Although some Customers may<br />

prefer personal contact, there is a<br />

growing body of research showing<br />

online counselling can have the<br />

same positive impact as face-toface<br />

counselling sessions.<br />






During the COVID-19 period, the<br />

Speech Pathology and Dietetics<br />

department were able to continue<br />

to provide services to Customers<br />

via Telehealth, with no Customers<br />

being disadvantaged by the<br />

change in circumstances. Speech<br />

pathologists were able to provide<br />

support to Customers with<br />

dysphagia, voice therapy, language<br />

therapy and AAC (augmentative<br />

alternative<br />

communication)<br />

therapy. The dietitians were able to<br />

provide assessment and support to<br />

Customers with dietary concerns.<br />

The speech pathologists were well<br />

supported by Speech Pathology<br />

Australia during the period, with<br />

enormous amounts of support and<br />

updates on best practice advice on<br />

Telehealth services. We were able to<br />

complete a course in assessing and<br />

managing dysphagia via Telehealth<br />

which was invaluable. We have<br />

also completed an 8-week poetry/<br />

voice group to our Customers<br />

via telehealth.<br />

We will continue to offer therapy<br />

over Telehealth as required,<br />

especially to those in remote areas<br />

with the lessons learnt during the<br />

unusual times we experienced.<br />

If you are interested in accessing<br />

services via Telehealth, please<br />

speak to your <strong>MSWA</strong> allied health<br />

professional.<br />


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

I MET<br />

A DOG<br />

I was heading down the<br />

street near my place in my<br />

electric wheelchair, when<br />

I saw an exceptionally<br />

large, shaggy Old English<br />

Sheepdog tied to the<br />

fence across the road from<br />

the newsagency.<br />

I’ve been a dog lover all my life and<br />

couldn’t resist stopping for a pat<br />

and a chat with him. I put out my<br />

hand first so he could sniff it and<br />

ascertain that I was friendly, then<br />

proceeded to pat him and scratch<br />

him behind the ears, which he<br />

seemed to like.<br />

Within a minute or two a gentleman<br />

came out of the newsagency<br />

and crossed the street to join<br />

us. He was the dog’s owner, and<br />

introduced himself as David, and<br />

the dog as Edward. It turns out<br />

the dog’s real name is Malizioso<br />

The Flying Dutchman as he is<br />

a pedigree show dog, and they<br />

always have interesting names, but<br />

he is colloquially called Edward.<br />

(Malizioso means mischievous<br />

in Italian. I can vouch for its<br />

appropriateness!) We spoke a few<br />

niceties, as you do when you first<br />

meet someone, then David asked,<br />

“So what is your ailment? Why are<br />

you using a wheelchair?"<br />

Immediately I was impressed with<br />

this gentleman. Over the years I have<br />

experienced all sorts of discomfort<br />

from other people when they see<br />

me in my wheelchair, ranging from<br />

not being able to look me in the eye,<br />

ignoring me completely, to chatting<br />

awkwardly but pretending the chair<br />

doesn’t exist. It was so refreshing<br />

to have someone come right out<br />

and ask me directly about my<br />

condition. I explained to him that I<br />

have multiple sclerosis, and over the<br />

years my legs have been affected<br />

and become weaker until I can no<br />

longer walk.<br />

David asked a few questions,<br />

then mentioned that he knew<br />

someone who lived in one of<br />

<strong>MSWA</strong>’s high-support residential<br />

facilities. Coincidentally I know<br />

this person quite well, which gave<br />

us another topic of conversation.<br />

While we were talking, I continued<br />

to pat Edward, then David untied<br />

his leash from the fence. Edward<br />

promptly attempted to climb onto<br />

my knee and lick my face! It was a<br />

bit like having a big hairy washing<br />

machine climbing onto one’s knee!<br />

It was clear I had made a friend. In<br />

fact, that day I made two friends,<br />

and David and I have continued<br />

to spend time together and enjoy<br />

each other’s company immensely. I<br />

am slowly being educated into the<br />

world of show dogs and learning<br />

just what a serious business it all is.<br />

I grew up on a farm and we had<br />

working dogs. Then I left home to<br />

study, and built a life of my own.<br />

I have nearly always had a dog<br />

as a pet, but they have always<br />

been mixed breed bitsers, with<br />

short hair and few maintenance<br />

requirements. I love dogs and have<br />

come to love Edward too, and even<br />

tolerate his obsession with licking<br />

my toes! I am grateful to Edward,<br />

because he is the catalyst that has<br />

brought a new friend and a new<br />

interest into my life.<br />


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



Diane King was on the long road to recovery from an horrific work accident, when a routine<br />

MRI returned a result that no one was expecting.<br />

Prior to the accident, Diane was<br />

fit and healthy. She went for ten<br />

kilometre walks in the South West,<br />

and was often up and down ladders<br />

as part of the cleaning business she<br />

still operates. In 2016, Diane was at<br />

a client’s home when she stepped<br />

into a dark room, unaware that<br />

she had opened the door onto a<br />

set of stairs with no landing. She<br />

tumbled down the stairs and into<br />

the basement.<br />

“My arm snapped on the way<br />

down and I was knocked out,”<br />

recalls Diane.<br />

Her colleague rushed her to<br />

hospital, where she underwent<br />

emergency surgery on her arm. Her<br />

lower back was significantly bruised<br />

and she had lumps on her head.<br />

Eight months later, she had begun<br />

to recover. A friend questioned why<br />

Diane had never been offered a<br />

scan to check her head for damage.<br />

So, Diane booked an MRI. When<br />

the results came back, Diane was<br />

sent to a neurologist to commence<br />

treatment for MS.<br />

“My world fell apart,” says Diane. “I<br />

was still dealing with the injuries<br />

from my accident and now this.<br />

“I was devastated. How? Why?<br />

When?”<br />

She was diagnosed in 2017 and Diane<br />

has good and bad days depending<br />

on factors such as weather, stress<br />

and physical challenges. She<br />

finds it difficult to walk more than<br />

50 metres and she suffers from<br />

muscle stiffness.<br />

She regularly attends the gym at<br />

the <strong>MSWA</strong> Vasse Service Centre,<br />

which was relocated to its new and<br />

superior site in 2019. Diane trains<br />

with a physiotherapy assistant –<br />

currently on a one-on-one basis<br />

due to COVID-19 precautions.<br />

Her main focus is keeping her<br />

body free from stiffness, for which<br />

she follows a reformer, bike and<br />

stretching routine.<br />

When she first reached out to<br />

<strong>MSWA</strong>, the Customer Engagement<br />

Team advised Diane how to apply<br />

for NDIS funding. Because of the<br />

permanent back damage from her<br />

accident, Diane had been seeing<br />

her own physio for some time. She<br />

is now being treated with funds<br />

provided through a self-managed<br />

NDIS plan.<br />

“My physio has been with me<br />

through the whole journey. I went<br />

to her for my injuries and now she<br />

treats my MS.”<br />

Diane has now been living with MS<br />

for over two years, and it has been a<br />

period of adjustment.<br />

“It’s about knowing your limits,”<br />

she says.<br />

For example, she will anticipate that<br />

a spell of hot weather will make her<br />

very fatigued, which is a common<br />

experience for most of those living<br />

with MS, and it can also worsen<br />

other symptoms.<br />

Diane is still running her cleaning<br />

business, saying it keeps her active<br />

but that it’s also quite taxing on<br />

her body.<br />


“I look after myself a lot<br />

better. I eat healthier.<br />

My hope is to live as<br />

independently as<br />

possible for as long as<br />

possible. I know there<br />

are services for more<br />

high dependency, but<br />

I’m not ready to think<br />

about it just yet.”<br />

Diane has done a lot of research into<br />

a possible link between physical and<br />

emotional trauma and the onset of<br />

MS symptoms. Scientific evidence<br />

on this connection is mixed. The<br />

results of one study did suggest a<br />

statistically significant association<br />

between head trauma as an adult<br />

and the risk for developing MS. 1<br />

However, cohort studies did not.<br />

MS is multifactorial, with a strong<br />

autoimmune component. Things<br />

like genetic susceptibility and<br />

environment also need to be taken<br />

into account.<br />

“Before my accident, there were<br />

absolutely no symptoms. After the<br />

accident, I was really, really messed<br />

up. Lumps all over my body. I do<br />

believe there is a connection.”<br />

Diane is grateful to be surrounded<br />

by a small but supportive group of<br />

people. She lives in Dunsborough<br />

with her teenage daughter and<br />

son, who this year celebrated his<br />

21st birthday in an unexpectedly<br />

low key way due to the COVID-19<br />

social restrictions, but they all<br />

enjoyed marking the milestone. Her<br />

eldest daughter lives in Perth and is<br />

expecting a baby very soon.<br />

“I used to go bodyboarding in<br />

the surf. I don’t do that anymore.<br />

But I can snorkel and I’ve always<br />

wanted to swim with the whale<br />

sharks. I go for beach walks and set<br />

goals to build up stamina. I think<br />

it’s important to give yourself a<br />

challenge every single day, to keep<br />

that level up.”<br />

Diane also loves photography and<br />

wants to do more of it in the future.<br />

“I used to be able to go down bush<br />

tracks and clamber up onto rocks<br />

and ledges to take photos, now I<br />

have to take the more stable tracks.”<br />

Above all, Diane is looking forward<br />

to being a grandmother. Due to<br />

COVID-19 precautions, she knows<br />

she might have to wait a while for<br />

that first cuddle, but these days she<br />

has reached a level of acceptance<br />

about life’s curve balls.<br />

“The thing with MS is<br />

you literally have no<br />

idea what your future is.<br />

We just have to go<br />

with the flow and see<br />

what happens.”<br />

1<br />

Lunny, C.A., S.N. Fraser, and J.A. Knopp-Sihota. “Physical trauma and risk of multiple sclerosis: A systematic<br />

review and meta-analysis of observational studies.” Journal of the Neurological Sciences 336 (2014) 13–23.<br />



WHAT’S ON<br />


Thursday 30 July (Online Event)<br />

Join us on Thursday, 30 July to<br />

celebrate International Day of<br />

Friendship with some Hip Hop<br />

Yoga run by WA’s queen of Hip Hop<br />

Yoga, Kaye Waterhouse. This online<br />

session aims to raise awareness<br />

and funds for people living with<br />

a neurological condition in<br />

Western Australia.<br />

Sign up to take part at<br />

mswayoga.org.au<br />

<strong>MSWA</strong> MEGA HOME LOTTERY<br />

August<br />

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

will be back in August. And this<br />

time, we’ve got a stunning Webb &<br />

Brown-Neaves home in gorgeous<br />

City Beach AND one million dollars in<br />

cash to giveaway. All that’s missing<br />

is you! Every ticket sold helps<br />

fund vital services and support for<br />

West Australians living with<br />

neurological conditions.<br />

Visit mswalottery.com.au<br />


August<br />

Embark on an epic adventure this<br />

August! The MS Readathon inspires<br />

kids to read as much as they can, all<br />

for an incredible cause. This year’s<br />

MS Readathon will be a magical<br />

quest, and the adventure kicks off<br />

on August 1 and wraps up on August<br />

31. Children can register with their<br />

school or individually.<br />

Best of all, kids joining our quest<br />

will not only nurture their love of<br />

reading, they will also be helping<br />

kids who have a parent with a<br />

neurological condition.<br />

Register online at<br />

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



Sunday 8 November<br />

The Central Park Plunge is a unique<br />

team building opportunity for you,<br />

your friends, family or colleagues.<br />

Or simply the chance to tackle a<br />

personal challenge and abseil 220<br />

metres down Perth’s tallest building,<br />

Central Park. All while making a<br />

real difference to the thousands of<br />

Western Australians living with all<br />

neurological conditions.<br />

If you’d like to join us on Sunday<br />

8 November, registrations are<br />

now open:<br />

registration.everydayhero.com/ps/<br />

event/CPP<strong>2020</strong><strong>MSWA</strong><br />

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

Sunday 22 November<br />

Get ready for the <strong>MSWA</strong> Ocean<br />

Ride! This November, cheer on<br />

participants in the eleventh annual<br />

<strong>MSWA</strong> Ocean Ride, an iconic cycling<br />

event that takes riders along WA’s<br />

beautiful coastline from Fremantle<br />

to Hillarys.<br />

Speak to your physiotherapist about<br />

the annual Members Ride, in which<br />

<strong>MSWA</strong> Customers who are living<br />

with a neurological condition can<br />

get involved during their weekly<br />

physiotherapy classes.<br />

Of course, we’ll also be offering<br />

the Stationary Cycle Challenge.<br />

Last year our Butler, Rockingham,<br />

Mandurah, Wilson, Geraldton,<br />

Albany, Beechboro and Kelmscott<br />

Centres all took part. Speak to your<br />

local outreach coordinator to find<br />

out how to join the team.<br />

Find out more:<br />

mswaoceanride.org.au<br />

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

We recently surveyed the market on its awareness of <strong>MSWA</strong>, asking<br />

various questions to a range of our Customers, fundraisers and the<br />

general public and how well they knew our brand. I am very pleased<br />

to report that the general population’s awareness of <strong>MSWA</strong> as a<br />

provider of services and support to those living with all neurological<br />

conditions in WA has risen from 72% when we last surveyed<br />

people in 2018, to 83%. It shows that the message is getting out<br />

there, enabling us to extend our support to more and more people.<br />

‘Metrix’, the independent organisation that performed the survey<br />

for us, reported “<strong>MSWA</strong> is performing strongly overall, surpassing<br />

healthcare benchmarks with high values of satisfaction.”<br />


CEO<br />

We also have the wrap up of the Customer Satisfaction Survey in this<br />

edition of <strong>Bulletin</strong>. Please turn the page to see the results.<br />

Thank you to everyone who took the time to participate in these<br />

surveys for continuing to help us improve.<br />



<strong>MSWA</strong> CUSTOMER SATISFACTION<br />

<strong>MSWA</strong> invited Customers who received at least one service from us in 2019 to give us<br />

their feedback. We were delighted that 491 of you took the time to complete our survey.<br />

The results help us to understand how we are performing year on year, and identify areas<br />

for improvement, so thank you!<br />



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

Dissatisfied<br />

6%<br />

Very Dissatisfied<br />

2%<br />

NET Satisfied<br />

Satisfied<br />

37%<br />

Very<br />

Satisfied<br />

55%<br />

92%<br />

There is no difference in<br />

satisfaction between those<br />

who are on NDIS funding and<br />

those who are not.<br />


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


SCORE)<br />

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

were asked on a scale<br />

of 0 to 10 whether they<br />

would recommend<br />

<strong>MSWA</strong> to someone else<br />

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

+45<br />

<strong>MSWA</strong>’s NPS is above<br />

service provider<br />

benchmarks in WA<br />

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

60<br />

40<br />

20<br />

0<br />

15<br />

Detractors<br />

(0-6)<br />

25<br />

Passives<br />

(7-8)<br />

60<br />

Promoters<br />

(9-10)<br />

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



TREATED BY <strong>MSWA</strong><br />

No Sometimes Yes<br />

Treated with dignity<br />

and respect<br />

Listened to<br />

Valued<br />

98%<br />

95%<br />

93%<br />

20 0 20<br />

40 60 80 100<br />

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



Very Dissatisfied Dissatisfied<br />

Satisfied Very Satisfied<br />

NET<br />

Satisfied<br />

Counselling 99%<br />

Speech Pathology<br />

95%<br />



Online Phone TOTAL<br />

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

Dietetics<br />

Physiotherapy<br />

Occupational Therapy<br />

94%<br />

94%<br />

93%<br />

Nursing 219 64% 92 61% 311 63%<br />

Physiotherapy 222 65% 80 53% 302 62%<br />

Occupational Therapy 176 52% 58 39% 234 48%<br />

Nursing<br />

Individual Options<br />

Social Welfare<br />

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

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

92%<br />

91%<br />

91%<br />

Individual Options 119 35% 55 37% 174 35%<br />

Social Welfare 131 38% 42 28% 173 35%<br />

Counselling 105 31% 20 13% 125 25%<br />

Speech Pathology 96 28% 27 18% 123 25%<br />

Outreach 43 13% 27 18% 70 14%<br />

Accommodation 26 8% n/a n/a 26 5%<br />


Very Dissatisfied Dissatisfied<br />

Satisfied Very Satisfied<br />

Counselling<br />

NET<br />

Satisfied<br />

97%<br />

Respite 16 5% 8 5% 24 5%<br />

TOTAL 341 69% 150 31% 491 100%<br />

AGE<br />

GENDER<br />

Physiotherapy<br />

96%<br />

Speech Pathology<br />

96%<br />

18-34<br />

Female<br />

Nursing<br />

95%<br />

35-54<br />

Dietetics<br />

95%<br />

Occupational Therapy<br />


Very Dissatisfied Dissatisfied<br />

Satisfied Very Satisfied<br />

Outreach<br />

(opening hours)<br />

Counselling<br />

Speech Pathology<br />

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

Nursing<br />

Dietetics<br />

Social Welfare<br />

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

95%<br />

NET<br />

Satisfied<br />

97%<br />

96%<br />

92%<br />

90%<br />

89%<br />

89%<br />

55+<br />

Less than<br />

one year<br />

More than<br />

one year<br />


Metro<br />

Regional<br />

0<br />


0<br />

20<br />

20<br />

40 60 80<br />

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

40 60 80 100<br />

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

Male<br />


MS<br />

ONC<br />

0<br />

0<br />

20<br />

20<br />

40 60 80<br />

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

40 60 80 100<br />

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

Physiotherapy<br />

Occupational Therapy<br />

89%<br />

88%<br />

0 20 40 60 80 100<br />

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

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

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



<strong>MSWA</strong>’S READATHON HEROES<br />

The MS Readathon inspires kids to read as much as they can for the month of August, all<br />

for an incredible cause. We spoke to some of the children in our Customers’ lives about why<br />

they are taking part this year…<br />



WITH MS.<br />

How old are you, Willow? 8.<br />

What book are you reading at<br />

the moment?<br />

‘Harry Potter and the Order of the<br />

Phoenix’. It’s the biggest one!<br />

Who is your favourite Harry Potter<br />

character?<br />

I have two favourites – Hermione<br />

Granger and Luna Lovegood –<br />

because they both know a lot.<br />

Do you have any tips for the other<br />

kids taking part in Readathon?<br />

One way to understand words<br />

when you’re reading alone is to<br />

sound them out. It makes reading<br />

a whole lot more fun!<br />




How old are you, Ruby? 11.<br />

What do you love about doing<br />

Readathon?<br />

I like to read lots of books and I<br />

love to think that my participation<br />

will help the people affected by<br />

neurological conditions.<br />

Why do you think raising funds for<br />

<strong>MSWA</strong> is important?<br />

I think it is important because it will<br />

help people like my grandad Bob to<br />

live the life that they choose.<br />

Do you have any tips for the other<br />

kids taking part in Readathon?<br />

You need to find the books that<br />

interest you the most and commit<br />

to reading them!<br />

What is your favourite book?<br />

Though I love to read books about<br />

World War II, my favourite book<br />

would be a book called ‘Ugly’ and it<br />

is about a boy with face deformities<br />

trying to fit in.<br />





How old are you?<br />

Sophia is 10, Mario is 8, Claudia is 6<br />

and Christian is 2.<br />

What do you enjoy about reading,<br />

Sophia?<br />

Reading allows me to get lost<br />

in another world. I love reading<br />

fantasy and my favourite books are<br />

Harry Potter.<br />

What are your favourite types of<br />

books, Mario?<br />

I like reading non fiction books. I<br />

like facts and information. I love<br />

learning about deadly animals and<br />

world records.<br />

Why do you love reading, Claudia?<br />

Because I get to snuggle with mum<br />

and dad.<br />

Funds raised from the MS Readathon will help fund vital support services in WA.<br />

In particular, the focus is on our special Family Camps and Fun Days. These camps provide an<br />

opportunity for kids who have a parent living with a neurological condition like multiple sclerosis<br />

or Parkinson’s disease, to spend quality time with their family, learn more about the condition their<br />

parents have and bond with other kids who are sharing their journey.<br />

The MS Readathon is such a wonderful way for kids to help other kids, all while falling in love with the<br />

wonder and magic of reading.<br />






EPIC<br />

EPIC<br />




AUGUST <strong>2020</strong><br />


(08) 6454 3164 | msreadathon@mswa.org.au





Hello, all. So much has happened since we last chatted. This <strong>Bulletin</strong> is riding on the coattails<br />

of the COVID-19 pandemic, which has seen restrictions put in place; and many now being<br />

removed. It is amazing how so much can happen in such a short period of time. I am looking<br />

forward to getting back into the everyday running of our volunteering again, here at <strong>MSWA</strong>.<br />

I know my volunteers will be itching<br />

to get back into it too, or maybe<br />

you have enjoyed the break and<br />

the slowing down of the everyday<br />

pace. I know I have. Because I am<br />

lucky enough to have two roles at<br />

<strong>MSWA</strong>, I have worked from home<br />

for a couple of days and have been<br />

privileged to continue to support<br />

our Members and Clients in the<br />

community. It was great to keep<br />

doing what I love, even if it looked<br />

different than before.<br />

All going well, by the<br />

time this <strong>Bulletin</strong> hits<br />

the letterboxes, most of<br />

our groups will be back<br />

at the Outreach Centres<br />

and filled with your lovely<br />

smiling and bubbly faces.<br />

As you will read on the next page,<br />

Mary, our lovely Wilson kitchen<br />

volunteer who turned 90 last year,<br />

decided to hang up her apron for<br />

the last time before our kitchen<br />

closed in March. Mary will be sorely<br />

missed, and we greatly appreciate<br />

the service and dedication she<br />

has given to <strong>MSWA</strong> for the past<br />

fifteen years.<br />

It was National Volunteers Week 18<br />

May until 24 May, which we were<br />

unable to celebrate in style with<br />

a luncheon as we have done in<br />

previous years. The slogan this year<br />

was ‘Give a little, change a lot’, which<br />

I thought was very fitting. And just<br />

because we couldn’t celebrate it<br />

in person, doesn’t mean you were<br />

forgotten. I reached out to all of you<br />

during this time and thanked you<br />

for the marvellous job that you do for<br />

our Customers and staff at <strong>MSWA</strong>.<br />

We may not have been able to see<br />

you, but we certainly do appreciate<br />

you and thank you for your time<br />

and service to the organisation.<br />

Many a holiday and other plans went<br />

awry during this unusual time. I was<br />

meant to be attending a wedding<br />

in England via Ireland and Scotland,<br />

but alas, I couldn’t go. I just had a<br />

different holiday. I walked the ‘Cape<br />

to Cape’ for the second time with<br />

my brother. I called it the ‘Freakin’<br />

Awesome Cape to Cape Rainbow<br />

Tour’. We had rainbows every day,<br />

sometimes double rainbows. What<br />

a beautiful state we live in..<br />

I look forward to seeing you all<br />

soon. If you would like to discuss<br />

any volunteering opportunities or<br />

have a friend or two who may like to<br />

volunteer with us, please give them<br />

my details and we can have a chat.<br />

volunteer.coordinator@mswa.org.au<br />

or 9365 4843.<br />

I trust this <strong>Bulletin</strong> finds you all fit,<br />

healthy, well-rested, and ready and<br />

raring to go.<br />

Take care, keep smiling and bye<br />

for now.<br />





Six months after celebrating her 90th birthday (pictured below), Mary Cross has announced<br />

her retirement, after fifteen years as a volunteer at the <strong>MSWA</strong> Wilson Outreach group.<br />

Mary said, “It feels like the<br />

right time.”<br />

Mary joined us in 2004. She had<br />

no personal connection to MS at<br />

the time, but was looking for a<br />

new volunteering opportunity. Her<br />

granddaughter mentioned that a<br />

friend’s mother was volunteering<br />

at <strong>MSWA</strong>. “They’re always needing<br />

volunteers,” she told Mary.<br />

After an initial interview, Mary<br />

started at the weekly Outreach<br />

group at our Wilson Service Centre.<br />

“I started in the common room,<br />

doing the coffee,” recalled Mary.<br />

“When a gentleman wanted to take<br />

that over, the coordinator suggested<br />

I talk to the Members, but I’m not a<br />

very good conversationalist!<br />

“Then they were short in the kitchen<br />

and asked me to help. ‘Ooh yes,’ I<br />

said, ‘that’d be great.’”<br />

At first, a young student ran the<br />

kitchen and Mary helped set up for<br />

making the sandwiches. He then<br />

left, and Mary was in charge. Every<br />

Thursday for fifteen years.<br />

“I would catch the bus from home<br />

into town, then get another bus to<br />

the Wilson Centre. I always had a<br />

good day. I would write in my diary<br />

every Thursday ‘I had a good day<br />

at <strong>MSWA</strong>.’<br />

<strong>MSWA</strong> Senior Volunteer Coordinator, Nicola Ryan, and Mary Cross at her<br />

90th Birthday Morning Tea. (October 2019).<br />

“<strong>MSWA</strong> does everything<br />

right. It was always so lovely<br />

to see the Members come<br />

in and have their lunch.<br />

Marcus Stafford would<br />

often come along and keep<br />

us informed of how well<br />

everything’s going.”<br />

The team at Wilson offered to give<br />

Mary a send-off, but she insisted,<br />

“I’m not a party person. I don’t want<br />

a fuss.”<br />

Mary is looking forward to having<br />

more free time in her 90s to<br />

do the things she enjoys. She<br />

goes on outings with her family<br />

and is a member of an over-55s<br />

walking group. She has twin greatgranddaughters<br />

in Sydney who she<br />

cherishes: “They keep me in touch<br />

with things.”<br />

The staff and volunteers we spoke<br />

to at <strong>MSWA</strong> Wilson say they will<br />

miss having Mary in the kitchen<br />

on Thursdays, working so hard<br />

and never seeking recognition.<br />

They spoke in admiration of her<br />

independent spirit, noting that<br />

she never missed a Thursday, even<br />

when the Outreach was off-site for 9<br />

months due to renovations. <strong>MSWA</strong>’s<br />

senior volunteer coordinator said,<br />

“Nothing ever seems too much<br />

trouble for Mary. She is one in a<br />

million!”<br />

If you would like to know<br />

more about becoming a<br />

regular volunteer for <strong>MSWA</strong>,<br />

please call 9365 4843 or email<br />

volunteer.coordinator@mswa.org.au<br />

to discuss the current opportunities<br />

available.<br />





Our wonderful residents have always been proud of their lovely homes, and the surrounds,<br />

at Hamilton Hill; as are the great staff. Now we have another reason to show off about our<br />

facility; a beautiful re-vamped kitchen in the original site.<br />

We now have a larger, more<br />

functional, modern and high quality<br />

kitchen where residents’ meals, and<br />

our famous catering for special<br />

events, can be even better – if that’s<br />

possible!<br />

Thanks to the generosity of a<br />

group of donors at last year’s MS<br />

Dinner Auction, and the interior<br />

design skills of Andrea Taylor, this<br />

makeover has been better than we<br />

could have imagined.<br />

As they are now open, we have<br />

the enviable opportunity to hit the<br />

shops to get the right accessories to<br />

add the finishing touches!<br />



Refurbished kitchen at the <strong>MSWA</strong><br />

Hamilton Hill residential site.<br />


Treendale Respite open again!<br />

Having been closed for respite for<br />

several weeks we are all glad to say<br />

“we’re open for respite again”, and<br />

we would love to take your booking!<br />

The COVID-19 precautions and the<br />

Government’s closing of intrastate<br />

borders with the creation of zones,<br />

resulted in us closing respite. Now<br />

many restrictions have been lifted<br />

we are pleased to say we are open<br />

for bookings for the respite house<br />

and the family unit.<br />

If you have never been to Treendale<br />

Gardens for respite, we are situated<br />

in lovely surrounds in Australind,<br />

close to a park and local shops,<br />

and 20 minutes out of Bunbury.<br />

Our friendly staff are experienced<br />

in providing support and care for<br />

people living with moderate and<br />

high care needs due to MS and<br />

other neurological conditions.<br />

The respite home has six bedrooms,<br />

three bathrooms, communal lounge<br />

and dining areas, and outside<br />

courtyards. The family unit is selfcontained<br />

with three bedrooms and<br />

two bathrooms, large communal<br />

areas and outside courtyards. The<br />

homes are fully accessible and we<br />

have care support staff onsite 24/7.<br />

For bookings and other enquiries<br />

please don’t hesitate to call<br />

our friendly staff – Linda, Paula<br />

or Jenny on 9725 9209 or email<br />

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






We have not forgotten the camps! We know what the camps mean to our Members,<br />

especially those who have had the opportunity to participate in them over the many years<br />

we have run them. Unfortunately, like many things, COVID-19 resulted in the planned camps<br />

being cancelled, but we can’t wait to get them started again when it’s safe and appropriate.<br />

They are a place to de-stress, laugh,<br />

and to enjoy the company of<br />

friends or to make new ones. A brief<br />

getaway can make a very positive<br />

difference, especially for the carers.<br />

Lotterywest has been very generous<br />

over the years, giving us a grant<br />

each year, and once again they<br />

have provided funding to support<br />

our camps program, supporting<br />

Members, carers and families.<br />

Camps will happen again but, as I<br />

write this, I cannot say exactly when.<br />

It may be possible for us to run<br />

single-day events that are fun and<br />

can bring people together. How<br />

long has it been since you had a<br />

day at the zoo, or watched a sunset<br />

while enjoying fish ‘n’ chips? If<br />

you would like to be informed<br />

of any single-day events, please<br />

contact Dawn Burke by emailing<br />

dawn.burke@mswa.org.au.<br />

I would also like to say a huge thank<br />

you and belated farewell to Sumit,<br />

who left <strong>MSWA</strong> in January to take<br />

up other opportunities. Sumit was<br />

with <strong>MSWA</strong> for nearly 10 years. He<br />

facilitated the camps for many<br />

years and made sure that everyone<br />

was safe, well fed and had fun on<br />

the camps. The good news is that<br />

Dawn, his offsider at camps, is still<br />

here and ready to welcome you<br />

back again.<br />

Much of the time staff spend<br />

on camps is voluntary and<br />

the support carried out by<br />

staff and volunteers attending<br />

the camps is what makes it<br />

possible to run them.<br />




Sumit Sandhu enjoying a carers’<br />

camp on Rottnest Island, Feb 2016.<br />




ONLINE?<br />

Register your email address today to start<br />

receiving our monthly Vitality e-newsletter<br />

or the <strong>Bulletin</strong> magazine online.<br />

Email damien.hill@mswa.org.au or call 9365 4814<br />

and let us know your current email address,<br />

or to update your contact details.<br />





Our Outreach participants have always commented about<br />

how much they really enjoy their weekly outings to our <strong>MSWA</strong><br />

hubs. Part of the reason is the array of different activities,<br />

themed days and excursions. However, as we know, the last<br />

couple of months have meant that the Outreach doors had<br />

to temporarily close to ensure the safety of all our Customers<br />

during the pandemic.<br />

Christine Weston,<br />

<strong>MSWA</strong> Support Worker.<br />

This wasn’t just something that<br />

affected our Outreach participants,<br />

but also the wonderful staff who<br />

work within the groups. “It’s<br />

amazing how much you can miss<br />

that regular contact,” stated several<br />

of our Customers and staff. To<br />

address that, some of the Outreach<br />

staff started contacting our<br />

Outreach participants to see how<br />

they were doing.<br />

This proved to be very successful<br />

and welcomed by all. The Outreach<br />

staff from Albany, Beechboro,<br />

Rockingham and Wilson have<br />

now been calling our Outreach<br />

members on a weekly basis. The<br />

staff were able to have a chat<br />

with Customers about what they<br />

have been up to during this break<br />

and to share stories about life in<br />

temporary isolation. A number<br />

of our Customers said that they<br />

appreciated these calls as it made<br />

them know that they were valued<br />

and had not been forgotten.<br />

Jackie Dinsey,<br />

<strong>MSWA</strong> Support Worker.<br />

Overall, the feedback to staff was<br />

that the weekly calls were<br />

something that so many of our<br />

Customers looked forward to, and<br />

the staff reported having really<br />

enjoyed their one-to-one phone<br />

catch-ups. Staff commented that<br />

they learned a lot of new things<br />

about several of our Customers by<br />

having that valued time to sit and<br />

talk at length about a number of<br />

topics. This has been one of the<br />

biggest positives to come out of<br />

a situation that was outside of<br />

anyone’s control and had changed<br />

in a short period of time.<br />

Some comments that we received<br />

included:<br />

“Thrilled with the call, it’s my<br />

favourite part of the day”<br />

“I was feeling very down before you<br />

called, now I’m feeling so much<br />

better”<br />

“I really look forward to a Monday<br />

when I know you are going to call”<br />

“I miss seeing my friends at<br />

Outreach”<br />

The staff within the Outreach hubs<br />

echo these comments. We have<br />

really enjoyed having these catchups<br />

and we are very much looking<br />

forward to seeing everyone again<br />

when our Outreach centres open<br />

back up.<br />

And from what we are hearing, it<br />

is looking at being sooner rather<br />

than later that we are going to be<br />

able to open the doors to Outreach.<br />

Customers will come flowing back,<br />

and our buildings will be abuzz with<br />

happy chatter and laughter again.<br />



In March and April, we ran a series on social media called #AtHomeWith<strong>MSWA</strong>, in which we<br />

checked in with members of our <strong>MSWA</strong> community to see different versions and perspectives<br />

of self-isolation. Here is a small selection…<br />


“What am I most looking forward<br />

to? Cuddling the grandies again.”<br />

Wendy is in high support care at<br />

our Butler facility. The introduction<br />

of strict hygiene and social<br />

distancing measures proved initially<br />

challenging, but residents and staff<br />

quickly adjusted.<br />

“There is a ‘can do’ attitude at Butler,”<br />

says Wendy. “You couldn’t get more<br />

dedicated staff. Sometimes I joke<br />

with them, ‘Come on girls, go home.<br />

You’ve got to get a life!’<br />

“We’re lucky here, we can sit out in<br />

our own backyards. My plants are<br />

getting a lot of attention!”<br />

However, Wendy admits she<br />

is struggling with maintaining<br />

physical separation from friends<br />

and family.<br />

“It’s highlighted the things we take<br />

for granted – somebody popping in<br />

for a coffee, or even the more simple<br />

things, like hugs.”<br />


Brett Johns has been living with<br />

MS for over 20 years. He is also<br />

a musician.<br />

“Music is my life. It’s my saviour. It’s<br />

such a wonderful healing force.<br />

I usually play my Ukulele at <strong>MSWA</strong><br />

Bunbury Outreach Centre where I<br />

go to meet, talk and share my music<br />

with others.<br />

I was starting to get a musical thing<br />

happening at ‘The Fridge’ – that’s<br />

what I call the outreach centre,<br />

because it’s where I go to chill!<br />

It’s currently closed, but that’s<br />

okay because I’ve been playing a lot<br />

at home.<br />

I’m still receiving in-home care by<br />

the <strong>MSWA</strong> crew and it’s good to<br />

be able to socialise with someone.<br />

To all you reading this, the staff at<br />

<strong>MSWA</strong>, thank you for continuing to<br />

do what you do.<br />

PS Excuse the hair – I need a shear,<br />

but I guess we’re all in the same boat.”<br />

<strong>MSWA</strong> HAMILTON HILL<br />

“As you can see social distancing<br />

is the new normal, as well as<br />

board games.”<br />

We caught up with Jayne, the lovely<br />

manager from <strong>MSWA</strong> Hamilton Hill,<br />

to see how our residents are doing<br />

self-isolating together.<br />

“We are all doing great here and<br />

have all kept our sense of humour.<br />

Hope you are keeping safe and well.”<br />

Read all the At Home<br />

With <strong>MSWA</strong> features here:<br />

mswa.org.au/at-home-with-mswa<br />




WEST.<br />


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

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

Call us on 1300 097 989 or visit mswa.org.au/residentialrespite to find out more.

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