MSWA Bulletin Magazine Summer 2021

COVID-19 Vaccination Advice from Professor Carroll AM | The Role of the Local Area Coordinator | Continence Physiotherapy | Counselling: Men, Let's Talk

COVID-19 Vaccination Advice from Professor Carroll AM | The Role of the Local Area Coordinator | Continence Physiotherapy | Counselling: Men, Let's Talk

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

<strong>Summer</strong> <strong>2021</strong><br />

mswa.org.au<br />

INSIDE<br />

/ COVID-19 Vaccination Advice<br />

from Professor Carroll AM<br />

/ The Role of the Local Area Coordinator<br />

/ Continence Physiotherapy<br />

Catch up with the attendees of<br />

our men’s Outreach group, p. 29.<br />

/ Counselling: Men, Let’s Talk


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 />

General feedback or complaints please<br />

contact Michelle John 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 and<br />

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 />


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

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



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


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

RESEARCH IN FOCUS .................. 7<br />

RESEARCH ROUND UP. ..............8-11<br />


OTHERS IN THE FLU SEASON. ......... 12<br />



WITH MULTIPLE SCLEROSIS . ......... 13<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 and function.<br />



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

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 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.<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 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 />

VICTORIA AMEY, 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 Clients, 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 />



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

condition who are over 65. Services are delivered by staff specifically trained in home<br />

care for older Australians who are living with a neurological condition.<br />




NEW STAFF AT <strong>MSWA</strong> . ............... 15<br />


DENISE’S JOURNEY IN ALBANY. .... 16-17<br />

THE <strong>MSWA</strong> QUALITY &<br />


MEN, LET’S TALK. ..................... 18<br />

<strong>MSWA</strong> NURSING IN<br />

A HOSPITAL SETTING ................. 19<br />

WE HELPED EACH OTHER . ........ 20-21<br />


STATE CONFERENCE . ................ 22<br />


SUMMER RULES ......................24<br />

COMMUNITY TEAM LEADERS. ......... 25<br />


INFORMATION EVENING. .............26<br />

<strong>MSWA</strong> FAMILY FUN DAY. .............27<br />




FERN RIVER AT CHRISTMAS ..........30<br />

WHAT’S ON . ...................... 32-33<br />

CONTAINERS FOR CHANGE . .......... 33<br />

OUTREACH NEWS . ...................34<br />


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



Welcome to the first <strong>Bulletin</strong> for <strong>2021</strong>. I wish everyone a happy new year, and we certainly<br />

hope <strong>2021</strong> is a good year for all.<br />

COVID-19 dominated the news in<br />

2020 and I am hopeful that it will<br />

not be in the news as much this<br />

year. In this <strong>Bulletin</strong> you will read<br />

an update on the latest news about<br />

the vaccine and advice for people<br />

with neurological conditions.<br />

The cover for this edition features<br />

attendees of the Rockingham Men’s<br />

Outreach group, who have enjoyed<br />

some fun times together recently.<br />

There is also information about the<br />

various services <strong>MSWA</strong> has to offer,<br />

with stories about actual events<br />

and people who are involved in the<br />

services. There are updates on areas<br />

such as Occupational Therapy,<br />

Physiotherapy, Counselling and<br />

Nursing, as well as lots of information<br />

about the NDIS and in particular<br />

the role of Local Area Coordinators<br />

who can help with negotiating an<br />

NDIS plan.<br />

There were two Newly Diagnosed<br />

Seminars held recently, which<br />

you can read about in this edition.<br />

These seminars are an important<br />

introduction for new Clients to the<br />

various services <strong>MSWA</strong> has to offer.<br />

I’m sure we will all enjoy reading<br />

the heart-warming story of<br />

volunteer Marie Harris from<br />

Bunbury who celebrated her 96th<br />

birthday recently. We will also read<br />

comments from Denise Amato who<br />

is looking forward to the opening of<br />

a high support facility in Albany.<br />

Our General Managers, Sue<br />

Shapland and Nicki Washington,<br />

have brought us much valuable<br />

information, including the<br />

latest Research Roundup, and<br />

introductions to some new staff<br />

members. There is also a timely<br />

reminder to Clients to get their<br />

annual flu vaccination.<br />

Now sit back, relax with a<br />

cup of tea, and read the<br />

<strong>Bulletin</strong> from cover to<br />

cover to be fully informed<br />

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





OF THE CEO<br />


CEO<br />

I’ve always enjoyed the notion<br />

that the turning of the calendar<br />

page presents fresh and positive<br />

opportunities for the year ahead,<br />

although I was unsure about the<br />

levels of bullish optimism that had<br />

been expressed by some for <strong>2021</strong>.<br />

Nonetheless, even with my more<br />

measured stance, I didn’t expect<br />

that February would include both<br />

a further lockdown in WA and a<br />

disastrous bushfire.<br />

It has been troubling to hear the sad<br />

accounts of people who have lost<br />

their homes in the fires. <strong>MSWA</strong> was<br />

actively in touch with our Clients<br />

and staff located in the affected<br />

areas to offer a range of supports.<br />

Our more vulnerable Clients were<br />

also offered the option to stay at<br />

one of our Respite facilities.<br />

As for the COVID-19 lockdown, I<br />

am reminded how quickly our<br />

world can change. In an attempt<br />

to lose some of my ‘Christmas<br />

kilos’, I had headed out for a kayak<br />

on that Sunday morning. By the<br />

time I returned, I was faced with<br />

the news that lockdown would be<br />

implemented imminently. A hastily<br />

convened teleconference with our<br />

senior managers on the Sunday<br />

evening and the organisation’s<br />

lockdown plan was implemented.<br />

The plan included all facets of<br />

both staff and Client impact, with<br />

the principle of ‘duty of care’ for<br />

all guiding our every step. Steps,<br />

needless to say, none of us wanted<br />

to take, but with the understanding<br />

that they were being taken for<br />

the greater good. I would like to<br />

thank and acknowledge everyone<br />

for doing your part in keeping our<br />

community safe. We have been<br />

in this position before, so it is not<br />

new, and if we can continue to<br />

follow Government Health advice,<br />

I am confident we can continue to<br />

‘one-up’ COVID-19.<br />

Away from the crises and back<br />

to general business, we have<br />

continued to strengthen our<br />

position as the leading organisation<br />

in the neurological supports/<br />

service industry. In fact, we are<br />

now the third biggest not-for-profit<br />

organisation in Western Australia.<br />

It is pleasing to know that our<br />

mission now includes helping such<br />

a broad range of folk as they travel<br />

with their individual journeys. As so<br />

many reading this article know as<br />

they face their everyday challenges,<br />

it can be unspeakably difficult<br />

managing multiple sclerosis,<br />

Parkinson’s, stroke, motor neurone<br />

disease and acquired brain injuries,<br />

to name a few. We hope that our<br />

presence might in some way offer<br />

you some reassurance.<br />

Testing times allow both<br />

organisations and individuals to<br />

demonstrate metal and resilience.<br />

From <strong>MSWA</strong>’s perspective, it is<br />

that resilience, when paired with<br />

the passion of our charter, that has<br />

allowed us to do the things that<br />

we do. Our business is strong. Our<br />

financials are steady. That allows us<br />

to turn our plans into reality.<br />

We have started development of<br />

our new Services Centre and High<br />

Support Accommodation Facility in<br />

Albany. In February we celebrated<br />

with the Albany community, where<br />

we formally turned the sod on the<br />

site of the development. While<br />

we are only in the early stages of<br />

the build, I believe that this new<br />

Facility will be a game-changer<br />

for our regional community in the<br />

Great Southern.<br />

Hot off the press, we have recently<br />

finalised our agreement with<br />

the State Government for the<br />

development of our Shenton Park<br />

Facility which will provide a new<br />

home for 20 adults living with a<br />

neurological condition, with<br />

24-hour care provided onsite.<br />

Champions shine through in<br />

turbulent times. I am forever<br />

impressed and proud of those<br />

champions who I meet at <strong>MSWA</strong><br />

every day.<br />

Thank you.<br />

Until the next edition.<br />









“Never regret a day in your<br />

life. Good days give you<br />

happiness & bad days give<br />

you experience.”<br />

Unknown.<br />

I think this quote would apply to<br />

us all at some stage. The ongoing<br />

challenges of COVID-19 have seen<br />

a resurgence in reconnecting<br />

with friends and family (when not<br />

restricted by lockdowns) and taking<br />

up pastimes that bring us happiness<br />

and some reassurance that is<br />

needed in times of uncertainty.<br />

Something many people with a<br />

neurological condition can relate to;<br />

taking some control where you can<br />

when other things may be out of<br />

your control.<br />

Australia is eagerly awaiting the<br />

imminent rollout of the COVID-19<br />

vaccines. Whilst we are one of<br />

the last countries starting our<br />

programs, this gives us insight into<br />

how it is working overseas where<br />

over 25 million people have received<br />

at least one of the vaccines. It also<br />

provides larger data sets to review<br />

regarding the safety and efficacy<br />

of the vaccines, which is always a<br />

good thing. We will provide our<br />

Clients and staff with government<br />

information updates as we receive<br />

them but also talk with your GP<br />

and/or neurologist who are also<br />

being kept up to date directly.<br />

Apart from our recent snap<br />

lockdown, WA has been able to keep<br />

the impact of COVID-19 manageable<br />

through border closures and<br />

quarantining of overseas travellers.<br />

This has also allowed <strong>MSWA</strong> to<br />

recommence our events and start<br />

the construction of the Albany<br />

Supported Accommodation and<br />

Services Hub, which is really exciting<br />

and moving ahead nicely.<br />

Our high support accommodation<br />

facilities, currently 42 places, are<br />

all full; I am taking expressions of<br />

interest for the Albany site which<br />

will have 10 units. Our residential<br />

respite facilities at City Beach and<br />

Australind do have some capacity<br />

and we are taking bookings.<br />

In December, we held a forum<br />

bringing together a number<br />

of <strong>MSWA</strong> funded, WA based,<br />

researchers for brief updates on<br />

their exciting work. <strong>MSWA</strong> is very<br />

proud of our ability to continue to<br />

grow our research funding annually<br />

and of the amazing talent and<br />

commitment by the WA teams.<br />

Their progress will be highlighted<br />

in <strong>Bulletin</strong> and hopefully through<br />

a seminar for our Clients later in<br />

the year.<br />

For the latest information<br />

you can always have a look<br />

at our website:<br />

mswa.org.au/<br />

commitment-to-research.<br />

Our contribution through MS<br />

Research Australia continues to<br />

grow and we will start receiving<br />

progress reports from the successful<br />

teams funded by <strong>MSWA</strong>.<br />

I am welcoming two new staff into<br />

our Quality and Compliance Team<br />

and there is a brief introduction on<br />

page 17.<br />

It’s a bit late to say ‘Happy New Year’<br />

as <strong>2021</strong> is well underway already,<br />

however I hope it is a better year<br />

for us all and heralds great things<br />

to come.<br />

The flu season will soon be upon<br />

us and as always, the Health<br />

Department recommends annual<br />

vaccinations for those at most<br />

risk; this will be in addition to the<br />

COVID-19 vaccination. As always,<br />

if you are unsure speak to your GP<br />

and/or neurologist.<br />

As we are in the hotter months<br />

remember to stay cool and stay<br />

safe; remember our Member and<br />

Client Services team are here for<br />

advice and support.<br />


MEMBER &<br />





Welcome to the summer<br />

edition of our Member &<br />

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

As we continue to watch how<br />

the pandemic is still impacting<br />

countries around the world,<br />

Australia remains one of the safest<br />

places to be, with comparatively<br />

few restrictions.<br />

The success of short-term<br />

lockdowns in keeping the numbers<br />

down and controlling community<br />

spread of COVID-19 has enabled<br />

us to plan for some more group<br />

seminars during <strong>2021</strong> so look out<br />

for the information on what will be<br />

planned throughout the year on<br />

the Programs, Workshops & Events<br />

page on our website.<br />

The latest news on NDIS<br />

involves discussions around the<br />

implementation of the independent<br />

assessments. This was first raised<br />

in 2019 and discussed further by<br />

Minister Roberts in an information<br />

paper released late November 2020.<br />

The key points are:<br />

/ Independent assessments are free.<br />

/ An independent assessment will<br />

take around three hours.<br />

/ You can choose to have it at<br />

a place that suits you, or by<br />

video call.<br />

/ The results of your assessment<br />

will help us work out your NDIS<br />

supports and budget.<br />

/ By mid-<strong>2021</strong>, independent<br />

assessments will be part of<br />

the access process for new<br />

participants.<br />

/ By the end of <strong>2021</strong>, independent<br />

assessments will be used as part<br />

of the normal plan review process<br />

If you have any questions<br />

regarding your NDIS plan, please<br />

do not hesitate to contact<br />

ndisenquiries@mswa.org.au – our<br />

team are always ready to help you<br />

navigate any problem or question<br />

you may have.<br />

The following link to the NDIS website provides<br />

more detail on the independent assessments<br />

process for you to review:<br />

ndis.gov.au/participants/independent-assessments/<br />

independent-assessment-process<br />

We are continuing to focus on<br />

how we can improve our service<br />

delivery. This involves reviewing our<br />

processes and supporting systems.<br />

I am very pleased to advise<br />

that we recruited Liz Stewart,<br />

Manager Service Improvement, and<br />

Ierfaan Peck, Manager, Business<br />

Transformation into the team. Both<br />

Liz and Ierfaan will have a dedicated<br />

focus on improving our systems<br />

and processes to ensure we are<br />

working the best we can to provide<br />

service delivery.<br />

I would also like to welcome Victoria<br />

Amey, Manager of Community<br />

Support. Victoria is managing the<br />

services provided in the home<br />

and will also be looking at how we<br />

get this right for you, our Clients.<br />

Victoria provides an update on<br />

page 25 of some of the initiatives<br />

currently being worked on.<br />

Last month you would have received<br />

an invitation to our annual Client<br />

satisfaction survey to understand<br />

how we performed in 2020.<br />

The feedback gathered for this<br />

survey will enable us to continue to<br />

make improvements.<br />

The results from the survey are<br />

currently being analysed and the<br />

findings will be reported in the<br />

next few weeks; we look forward<br />

to seeing the results and your<br />

feedback. Thank you to everyone<br />

who took the time to complete<br />

the survey.<br />

I wish you all the best start to <strong>2021</strong>.<br />




Here, we provide an insight into the research projects we are funding in Western Australia.<br />





One of our research partners,<br />

Edith Cowan University is looking<br />

for people aged between 18 and<br />

85 years living with neurological<br />

conditions, who are keen to<br />

contribute to a novel approach to<br />

tailoring interventions to individual<br />

needs in a project funded by <strong>MSWA</strong>.<br />

This study will provide valuable<br />

information needed to develop<br />

interventions to help improve the<br />

quality of life and future for people<br />

living with neurological conditions.<br />

What would I need to do to be part<br />

of the study?<br />

/ Attend an annual assessment<br />

at ECU, which will look at your<br />

memory and thinking, as well as<br />

your physical capacity.<br />

/ Donate a blood sample and<br />

undergo a body composition scan.<br />

/ Answer questionnaires in the<br />

comfort of your own home.<br />

Some of the research you could be<br />

part of:<br />

/ Trialling the effects of light<br />

therapy on fatigue and excessive<br />

daytime sleepiness in people<br />

living with neurological<br />

conditions, via specially made<br />

glasses, worn for sixty minutes<br />

in the morning, which deliver<br />

targeted light therapy through<br />

the eyes.<br />

/ Trialling a motion capture and<br />

digital gaming system called<br />

Mindpod to deliver therapeutic<br />

treatments for people with upper<br />

limb impairments – a common<br />

symptom for people living with a<br />

neurological condition.<br />

For further information please contact:<br />

Manja Laws, Project Coordinator<br />

6304 2423 or m.laws@ecu.edu.au<br />




ROUND UP<br />





Read more at:<br />

multiplesclerosisnewstoday.com<br />

MS risk may be higher for children<br />

of diabetic mothers, study suggests<br />

Children of diabetic mothers may be<br />

at more risk of developing multiple<br />

sclerosis (MS). Previous studies<br />

suggested a three to 10 times<br />

increased risk of MS in children born<br />

to women with diabetes mellitus<br />

— a disease where blood sugar<br />

levels are too high. However, these<br />

findings still need to be confirmed.<br />

Researchers in Denmark explored<br />

the possible mechanism underlying<br />

the association between maternal<br />

diabetes — diagnosed before<br />

conception (pregestational) or<br />

during pregnancy (gestational) —<br />

and the risk of MS in their children.<br />

16,979 children born to diabetic<br />

mothers were included and<br />

analysis adjusted for age and sex,<br />

as well as maternal and paternal<br />

age and maternal obesity. The MS<br />

risk among children with diabetic<br />

mothers was 63% higher than those<br />

with nondiabetic mothers.<br />

Children whose mothers had<br />

pregestational diabetes were at a 2.3<br />

times higher risk of MS, whereas MS<br />

risk was not statistically significant<br />

among children of mothers with<br />

gestational diabetes or diabetic<br />

fathers.<br />

“Based on high-quality national<br />

register data in Denmark, our large<br />

cohort study corroborates the<br />

view that maternal [diabetes] is<br />

associated with an increased risk of<br />

MS in the offspring,” the researchers<br />

concluded.<br />

Myelin‐specific T cells in animals with<br />

Japanese macaque encephalomyelitis<br />

A study published in the journal<br />

Annals of Clinical and Translational<br />

Neurology reports a new primate<br />

model uncovered by researchers<br />

can help scientists understand<br />

the immune and inflammatory<br />

processes underlying the<br />

development of multiple sclerosis<br />

(MS) in humans.<br />

Japanese macaques (snow monkeys)<br />

can develop encephalomyelitis<br />

(JME), which results in the progressive<br />

demyelination (destruction of<br />

myelin), like MS in humans.<br />

Examining the animals’ lesions,<br />

investigators discovered two types of<br />

immune T-cells that were primed to<br />

attack myelin sheath components.<br />

These T-cells also have been<br />

identified as drivers of inflammation<br />

in MS. These novel findings draw<br />

further parallels between JME and<br />

MS and demonstrate that JME can<br />

serve as an outstanding [primate]<br />

model to investigate mechanisms<br />

that lead to an IDD (inflammatory<br />

demyelinating disease).<br />

Future studies should focus on<br />

investigating the “triggers that<br />

precipitate JME development and<br />

progression, as understanding<br />

how disease initiates could lead<br />

to discovery of mechanisms<br />

driving MS.”<br />

Newly discovered subset of<br />

brain cells fight inflammation<br />

with instructions from the gut,<br />

Francisco Quintana, PhD, Associate<br />

Professor of Neurology, Center for<br />

Neurologic Diseases at Brigham<br />

and Women’s Hospital in Boston.<br />

Scientists reported a newly<br />

identified subset of astrocytes (brain<br />

cells) thought to simply provide<br />

nutrition and support to neurons,<br />

can prevent brain inflammation<br />

by promoting the destruction of<br />

pro-inflammatory immune T-cells.<br />






They also found that the<br />

anti-inflammatory activity of<br />

this astrocyte subpopulation is<br />

dependent on interferon-gamma<br />

— a molecule known to control<br />

immune and inflammatory<br />

responses — produced by natural<br />

killer (NK) cells, another subset of<br />

immune cells. The production of<br />

interferon-gamma by NK cells was<br />

seen to be controlled by the gut<br />

microbiome, the set of bacteria<br />

and other microbes that live in the<br />

gastrointestinal tract.<br />

According to the investigators,<br />

these discoveries may help guide<br />

the development of therapies<br />

for inflammatory neurological<br />

disorders such as (MS), as well as to<br />

treat some types of brain tumours<br />

known to exploit natural antiinflammatory<br />

signalling cascades<br />

to avoid being targeted by the<br />

immune system.<br />

“Finding microbiome-controlled<br />

anti-inflammatory subsets of<br />

astrocytes is an important advance<br />

in understanding of the CNS [brain<br />

and spinal cord] inflammation<br />

and its regulation,” the senior<br />

author stated. “This is a very novel<br />

mechanism by which the gut<br />

controls inflammation in the brain,”<br />

he added.<br />


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

New research identifies which<br />

type of nerve cells are lost in MS<br />

Research conducted at the MS<br />

Society Edinburgh Centre for MS<br />

Research has shown that a type<br />

of nerve cell called inhibitory<br />

interneurons are lost in people with<br />

MS. This opens up new avenues for<br />

the development of treatments to<br />

protect nerves.<br />

Using brain tissue samples from the<br />

MS Society Tissue Bank, Professor<br />

Anna Williams and her team found a<br />

dramatic reduction in the number of<br />

inhibitory interneurons in tissue from<br />

people who had been living with MS<br />

compared to those without MS.<br />

Another type of neuron –<br />

stimulating neurons – remained<br />

the same, even in people who had<br />

MS for decades. So it is clear not all<br />

nerves are damaged in the same<br />

way by MS. This is the first project<br />

to show the selective loss of specific<br />

nerve cells in people with MS.<br />

Current MS treatments target the<br />

immune system and reduce the<br />

damage to myelin. But to truly stop<br />

MS and stop disability progression,<br />

researchers need to find treatments<br />

that can replace lost myelin and<br />

protect nerves from damage.<br />

This project helps us to understand<br />

more about which nerves are<br />

damaged in MS and why; giving a<br />

greater understanding of how we<br />

might protect nerves from damage.<br />

Professor Anna Williams, explained:<br />

“Our research has shown that a<br />

specific type of neuron, called an<br />

inhibitory interneuron, is damaged<br />

in people with MS. This is really<br />

important because, in the search<br />

for new treatments, it focuses<br />

our efforts on trying to stop the<br />

damage and death of these special<br />

cells. Our next step is to convert this<br />

knowledge into new treatments<br />

that protect nerves and prevent<br />

neurodegeneration – and ultimately<br />

disability – in people living with MS.”<br />

The research team generated a new<br />

mouse model of myelin damage,<br />

which showed the same selective<br />

loss of inhibitory neurons seen<br />

in humans.<br />

Dr Lida Zoupi, who worked on this<br />

study, said: “In our mouse model,<br />

we show that demyelination<br />

directly leads to neurodegeneration,<br />

answering a long-standing debate<br />

between MS researchers in the<br />

process. By confirming this, we have a<br />

vital new insight into the mechanisms<br />

behind neurodegeneration, which<br />

could potentially be used as a<br />

model for the development of<br />

neuroprotective treatments.”<br />



New insights into pregnancy and<br />

early signs of MS<br />

Women with MS often report fewer<br />

symptoms during pregnancy.<br />

But studies exploring whether<br />

becoming pregnant or having<br />

children affects whether or when<br />

someone develops MS have so far<br />

been inconclusive. Now, the biggest<br />

study yet suggests pregnancy may<br />

be linked to a delay in experiencing<br />

one of the early signs of MS.<br />

The new study, from Australia<br />

and the Czech Republic, suggests<br />

pregnancy is associated with a<br />

3-year delay to the onset of clinically<br />

isolated syndrome (CIS).<br />

CIS is a first episode of neurological<br />

conditions that lasts at least 24<br />

hours. It is often the first stage in a<br />

diagnosis of MS, but some people<br />

never go on to experience further<br />

symptoms or develop MS.<br />

Researchers analysed data from<br />

2557 women through MS Base - a<br />

large database with information<br />

from people with MS, and MS<br />

clinics. All the women in this study<br />

had MS and had previously been<br />

diagnosed with CIS. The researchers<br />

then looked back at when they<br />

developed CIS and whether they<br />

had ever been pregnant.<br />

They found women who had been<br />

pregnant were diagnosed with CIS,<br />

on average, just over three years<br />

later than women who had never<br />

been pregnant. The researchers did<br />

not find a link between the number<br />

of times women had been pregnant<br />

and the time of CIS onset.<br />

We don’t fully understand<br />

why pregnancy seems to play<br />

a protective role in MS, but<br />

researchers think it could be to do<br />

with the hormones oestrogen and<br />

progesterone. During pregnancy,<br />

the levels of these hormones<br />

change dramatically, which may<br />

impact the immune system.<br />

Further research is needed to<br />

understand the link between MS,<br />

pregnancy, and hormone levels.<br />

Large registry studies involving<br />

data from thousands of people with<br />

MS – like MS Base and the UK’s MS<br />

Register – are one way to help build<br />

this picture.<br />


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

Ofatumumab – a repurposed<br />

treatment<br />

The American Food and Drug<br />

Administration (FDA) approved<br />

ofatumumab (tradename Kesimpta)<br />

for relapsing MS, including clinically<br />

isolated syndrome, relapsingremitting<br />

MS (RRMS), and active<br />

secondary progressive MS (SPMS).<br />

It has yet to be approved for use<br />

in Australia.<br />

Ofatumumab, originally a cancer<br />

treatment, has been ‘repurposed’<br />

for use in relapsing-remitting MS.<br />

Like some other MS medications,<br />

ofatumumab is an antibody which<br />

targets a protein called CD20 (found<br />

on a specific type of immune cell,<br />

known as a B cell).<br />

It has been used since 2009 for<br />

the treatment of chronic<br />

lymphocytic leukemia (under the<br />

tradename Arzerra).<br />

Ofatumumab is a ‘monoclonal<br />

antibody’, self-administered monthly<br />

by injection at home. Antibodies<br />

are proteins normally made by the<br />

immune system to target foreign<br />

invaders. ‘Monoclonal’ antibodies<br />

are so named because they have<br />

one specific target for destruction.<br />

In this case, ofatumumab has<br />

been engineered to target CD20, a<br />

molecule found on a type of immune<br />

cell thought to be important in<br />

the development and progression<br />

of MS. Other medications used<br />

to target CD20 in MS have<br />

included rituximab (Rituxan) and<br />

ocrelizumab (Ocrevus).<br />


Reduction in immune cells has been<br />

especially powerful in reducing<br />

relapses in RRMS, however, it has<br />

had less clinical effect in some<br />

forms of progressive forms of MS<br />

as progressive forms of MS are<br />

thought to generally have lower<br />

levels of inflammation.<br />

In clinical trials named ASCLEPIOS I<br />

and II, ofatumumab was compared<br />

against teriflunomide (Aubagio).<br />

Results showed that average yearly<br />

rates of relapses for patients with<br />

MS were reduced by 51% for those<br />

who received ofatumumab, and<br />

by 58% for those who received<br />

teriflunomide. A larger number<br />

in the ofatumumab group had<br />

no evidence of MS activity during<br />

the trial, measured via number of<br />

relapses, disability worsening, and<br />

MRI activity. No evidence of disease<br />

activity is widely recognised as the<br />

optimal treatment goal in MS.<br />

Potential side effects include<br />

injection-related reactions and<br />

increased risk of infections. We<br />

await review by the Therapeutic<br />

Goods Administration and<br />

Pharmaceutical Benefits Advisory<br />

Committee to determine whether<br />

ofatumumab will become available<br />

and subsidised for MS in Australia<br />

and for whom.<br />

How do additional medical<br />

conditions impact a person’s MS?<br />

Three new Australian studies<br />

investigated how common<br />

additional medical conditions are<br />

in people with MS, and how they<br />

impact MS symptoms and overall<br />

quality of life.<br />

People with MS had higher rates<br />

of other medical conditions than<br />

the general population including<br />

depression, high blood pressure<br />

and gastrointestinal problems.<br />

Additional medical conditions can<br />

exacerbate MS symptoms and<br />

reduce quality of life, so early and<br />

targeted management of these<br />

is important to benefit people<br />

with MS.<br />

The Australian MS Longitudinal<br />

Study (AMSLS), MS Research<br />

Australia’s collaborative research<br />

platform, has been running for<br />

almost twenty years. In recent years<br />

there has been increasing interest<br />

in the role of additional medical<br />

conditions (or ‘comorbidities’) in<br />

people with MS. There are many<br />

reports that they can delay an MS<br />

diagnosis, alter the progression of<br />

disability, affect treatment use, limit<br />

physical activity, and significantly<br />

reduce quality of life.<br />

Three new AMSLS studies by Dr<br />

Lara Lo from the University of<br />

Tasmania published in the Journal<br />

of Neurology investigated how<br />

other medical conditions impact<br />

Australians living with MS.<br />

/ The first study surveyed additional<br />

medical conditions in people<br />

with MS in Australia. Of the<br />

19 conditions analysed, 14 of<br />

these were significantly more<br />

common in people with MS<br />

than in the general population.<br />

These included cancer, heart<br />

and vascular diseases, anxiety,<br />

depression, and gastrointestinal<br />

disorders. There was no difference<br />

in the prevalence of these medical<br />

conditions between relapsingand<br />

progressive-onset disease,<br />

but the prevalence was higher in<br />

those with a longer duration of MS.<br />

MS might contribute to the risk<br />

of developing other conditions, or<br />

there might be shared factors that<br />

predispose people either directly<br />

or indirectly to several conditions<br />

including MS.<br />

/ The second study examined the<br />

impact of additional medical<br />

conditions on the severity of<br />

MS symptoms. The researchers<br />

found that MS symptoms were<br />

more severe in people with a<br />

higher number of other medical<br />

conditions, with the greatest<br />

effects on depression, anxiety,<br />

and pain.<br />

When analysed individually, mental<br />

health disorders (such as diagnosed<br />

depression) and musculoskeletal<br />

disorders (such as osteoporosis)<br />

had the most influence on MS<br />

symptoms. Mental health disorders<br />

were linked to increased severity<br />

of MS symptoms including anxiety,<br />

cognitive issues, fatigue, and sexual<br />

dysfunction; while musculoskeletal<br />

disorders were associated with<br />

increased pain, walking and balance<br />

issues, and bowel and bladder<br />

issues.<br />

/ The final study measured quality<br />

of life in people with MS, including<br />

factors such as happiness, coping,<br />

relationships, self-worth, mental<br />

health, independent living,<br />

senses and pain. Not surprisingly,<br />

having a higher number of<br />

additional medical conditions<br />

was associated with reduced<br />

quality of life, with mental health<br />

disorders having the greatest<br />

impact, and musculoskeletal<br />

disorders the second largest<br />

contributor.<br />

These studies highlight the<br />

huge impact additional medical<br />

conditions have on a person’s MS<br />

and their quality of life, as well as<br />

the importance of identifying and<br />

actively managing these conditions.<br />

Early and routine screening for<br />

other medical conditions should<br />

be integral to monitoring. Mental<br />

health and musculoskeletal<br />

conditions had the greatest impact<br />

for people with MS, so successful<br />

monitoring and management is<br />

vital to improving quality of life.<br />






Each winter brings the risk of flu, and<br />

annual flu vaccinations will soon be<br />

offered. The Australian Government<br />

recommends that everyone over<br />

the age of 6 months has the flu shot<br />

every year, especially those at risk;<br />

the young, the elderly and those<br />

with pre-existing illnesses.<br />

Our Clients often ask whether they<br />

should have the vaccination.<br />

Our medical advisor Professor<br />

Bill Carroll offers the following<br />

comment:<br />

"There is no evidence that these<br />

vaccinations make MS worse<br />

or cause a relapse. Should a<br />

relapse occur, around the time<br />

of 'flu' vaccination it is thought<br />

to be coincidental. Occasionally<br />

people with MS can have a brief<br />

exacerbation of existing MS<br />

symptoms, due to vaccination<br />

associated fever or fatigue, but this<br />

is not worsening of the MS.<br />

People with MS are advised to<br />

discuss any concerns 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 Getting vaccinated against the<br />

neurologist can advise you on these<br />

important health matters.<br />

flu helps protect you and the<br />

people around you. It’s particularly<br />

important to protect vulnerable<br />

It’s difficult to predict who will catch<br />

people in the community who can’t<br />

influenza (usually referred to as the<br />

be vaccinated, such as babies who<br />

flu), or who will become seriously ill<br />

are younger than 6 months and<br />

from it. The flu can require someone<br />

adults with low immunity.<br />

to be hospitalised and it can even<br />

be fatal.<br />

The Government funded Health Direct<br />

(healthdirect.gov.au/colds-and-flu-treatments)<br />

is packed with health information and advice.<br />

You can call a Health Direct RN 24/7<br />

for free advice: 1800 022 222.<br />








The current number one health priority around the world is the rapid and efficient roll<br />

out of an effective vaccine(s) for the COVID-19 pandemic. Based on known risk factors for<br />

complications and death from the virus several priority groups have been identified for the<br />

roll out of vaccination programs, but this is also heavily influenced by service delivery factors<br />

(eg healthcare workers).<br />

Evidence shows that people with MS<br />

(PwMS) are no more likely to develop<br />

COVID-19 or its complications,<br />

including those on treatment<br />

(with the possible exception of<br />

those on ocrelizumab who may<br />

be at very slightly increased risk of<br />

complications but not death). Those<br />

with higher levels of disability (such<br />

as advanced progressive MS) may<br />

be at increased risk of complications<br />

from COVID-19.<br />

The overall mortality from COVID-19<br />

in Australia is consistent with<br />

other parts of the world at 3.2% (8<br />

January <strong>2021</strong>). This means that on<br />

average three out of every 100 who<br />

might contract COVID-19 would not<br />

survive. Although infection rates in<br />

Australia and New Zealand remain<br />

very low, recent outbreaks (mostly<br />

related to quarantine breaches)<br />

have shown that further cases<br />

are inevitable.<br />

Nine vaccines have now been<br />

formally tested in phase III clinical<br />

trials in adults and have been<br />

approved in some parts of the<br />

world, and all have proven to be<br />

highly effective and very safe.<br />

Of the three vaccines currently<br />

available in the US/EU/UK, two are<br />

being organised for distribution<br />

in Australia starting mid-February<br />

<strong>2021</strong>. These are the Pfizer/BioNTech<br />

mRNA vaccine and the AstraZeneca<br />

or Oxford vaccine.<br />


As a PwMS should I have the<br />

COVID-19 vaccination?<br />

It is currently recommended that<br />

everyone over the age of 18 years<br />

should be vaccinated against<br />

COVID-19. There is no specific data<br />

relating to the administration of<br />

any of the vaccines to PwMS, but<br />

studies in the US and EU are being<br />

conducted concurrently. However,<br />

there is no theoretical reason<br />

why any of the currently available<br />

vaccines destined for Australia will<br />

pose any particular risk to PwMS.<br />

The risks of COVID-19 are very real,<br />

are higher in PwMS with higher<br />

levels of disability, and far outweigh<br />

any conceivable risk from the<br />

vaccines.<br />

Could the vaccine trigger a relapse<br />

of my MS?<br />

There is currently no evidence to<br />

suggest that this might be the case.<br />

All of the vaccines can produce<br />

side effects that include fever and<br />

fatigue. Fever can on rare occasions<br />

cause a re-emergence of previous<br />

MS symptoms (a so-called ‘pseudorelapse’)<br />

but it is widely thought<br />

that this only lasts as long as the<br />

fever is present (usually less than 24<br />

hours) and does not imply any new<br />

inflammation or damage to the<br />

nervous system. Similarly, fatigue<br />

to vaccination can be similar to MSrelated<br />

fatigue, but this should be<br />

only temporary.<br />






The year 2015 was significant for many different reasons. A guy call Bruno Mars had us all dancing<br />

to something called ‘Uptown Funk’ while Star Wars: The Force Awakens returned Han Solo<br />

to our screens for the first time in 32 years. However, perhaps most importantly, we started<br />

to see the what the NDIS would look like and how the new disability scheme would function.<br />

One significant announcement was<br />

that the Productivity Commission<br />

would be allocating around $550<br />

million per annum to allow the NDIA<br />

to employ Local Area Coordinators<br />

(LACs) with the stated goal of<br />

connecting people with disability<br />

to services and improving the<br />

way mainstream services support<br />

people with disabilities.<br />

Like most things there was a<br />

slight delay in getting started<br />

with the two companies picked<br />

to deliver the LAC services across<br />

WA (Mission Australia and APM)<br />

not commencing services until the<br />

last half of 2019. Nevertheless, once<br />

commenced these positions proved<br />

a valuable resource for you to help<br />

get the most out of your plan.<br />

The main role of the LAC is to be the<br />

visible ‘face’ of the NDIS. The NDIA<br />

is a massive organisation where it<br />

is sometimes hard to find someone<br />

to have an actual conversation.<br />

Therefore, LACs provide participants<br />

with a human interaction and<br />

help to bridge the gap between<br />

themselves, the agency and service<br />

providers such as <strong>MSWA</strong>. So, what<br />

exactly do LACs do and how do they<br />

connect with <strong>MSWA</strong>’s team?<br />


Once you are deemed eligible to<br />

receive an NDIS plan you will be<br />

allocated a LAC who will meet<br />

with you to develop a plan. It is<br />

important to note that your LAC<br />

does NOT approve your plan. They<br />

send recommendations to the<br />

NDIS planners, who make decisions<br />

about what is reasonable and<br />

necessary.<br />

It is also important to remember that<br />

these planning sessions are about<br />

you. No matter what the LAC says,<br />

you can advocate for the services<br />

and/or service providers that suit<br />

you. The plan should suit your life,<br />

not the beliefs of the planner. If you<br />

are not happy with your plan, speak<br />

to your LAC about it.<br />

Finally, do not forget that<br />

<strong>MSWA</strong>’s Customer Relationship<br />

Coordinators are also here to help<br />

during these planning meetings<br />

and will happily support you with<br />

pre-planning sessions and attend<br />

planning meetings.<br />


Despite the best efforts at planning,<br />

at times participants will find that<br />

their active plan is no longer suiting<br />

their service needs. This is where<br />

LACs become very important.<br />

Remember these people are the<br />

face of the NDIS so if the scheme is<br />

not working for you, ask them what<br />

they can do.<br />

It should be noted that LACs are<br />

not available for ongoing case<br />

management support, <strong>MSWA</strong>’s<br />

Customer Liaison Coordinators (CLCs)<br />

provide that service. But it does mean<br />

that the LACs should be available if<br />

your plan is not meeting your needs.<br />


LACs also have an important role<br />

in developing more inclusive<br />

communities for people with<br />

disability, leading to increased<br />

opportunities and choices for you<br />

outside of the funded scheme. LACs<br />

can help you to understand what<br />

community supports are available<br />

in your local area and assist you to<br />

link to these supports.<br />

One word of caution – as noted in the<br />

previous <strong>Bulletin</strong> – the introduction<br />

of the ‘Independent Assessors’ will<br />

likely have a significant affect on the<br />

planning and plan review process<br />

so the long-term role of Local Area<br />

Coordinators may change, however<br />

for now they remain a valuable<br />

resource that can be called upon.<br />

A good relationship between you<br />

and your LAC is important. While<br />

<strong>MSWA</strong>’s team will do whatever we<br />

can to help you get the most out<br />

of your plans, there are limits to<br />

our ability to influence the Agency.<br />

That is where LACs come into the<br />

picture by providing a direct link<br />

into the NDIA. They are paid to help.<br />

So, make sure that they do.<br />





NEW STAFF AT <strong>MSWA</strong><br />

<strong>MSWA</strong> would like to introduce you to some of our new managers, who you may encounter<br />

when receiving our services and support.<br />


MANAGER –<br />


I started with <strong>MSWA</strong> as Manager of<br />

Occupational Therapy in December<br />

2020. I have worked and managed<br />

teams within the not-for-profit<br />

sector in the last decade. As an OT,<br />

I have had previous experiences<br />

within Aged Care, Vision<br />

Rehabilitation and Workplace<br />

Modifications. Most recently I<br />

have spent time managing allied<br />

health teams in areas of NDIS<br />

and paediatrics and have enjoyed<br />

seeing growth in staff in their<br />

professions and with each other to<br />

achieve common goals.<br />

My passion in the field of<br />

occupational therapy has always<br />

been to promote a person’s<br />

independence and I count it a<br />

privilege to be able to journey with<br />

the Client and see them grow and<br />

achieve their goals. I am excited<br />

about being able to lead and work<br />

with the <strong>MSWA</strong> Occupational<br />

Therapy team – whether it is<br />

providing equipment, therapy or<br />

supporting family members – they<br />

all do it with a smile on their face<br />

knowing that they have made a<br />

difference in the Clients’ lives.<br />



I came to work at <strong>MSWA</strong> as a<br />

physiotherapist a little over two<br />

years ago, seeking a more rewarding<br />

place of work. After beginning at<br />

our Rockingham and Mandurah<br />

facilities I quickly realised that<br />

<strong>MSWA</strong> was where I wanted to be,<br />

which is why I’m delighted to be the<br />

new Manager of Physiotherapy.<br />

I have worn many hats over the<br />

course of my career working as a<br />

coach, an exercise physiologist and<br />

a physiotherapist to name a few.<br />

I have worked in elite sport and in<br />

private practice but have come full<br />

circle to end up back in the disability<br />

sector where my real passion lies.<br />

The common theme across my<br />

career is that it has always been<br />

about people and helping them<br />

to get the best out of themselves.<br />

I plan to approach my new role<br />

in the same way – by supporting<br />

my outstanding team, to together<br />

provide the best possible services to<br />

our Clients.<br />



I am the new Community Support<br />

Manager at <strong>MSWA</strong>, having<br />

commenced in November 2020.<br />

I have worked primarily in the<br />

community services sector with a<br />

lengthy background in the aged<br />

care and carer sector along with<br />

experience at the WA Department<br />

of Health. I have a passion for<br />

working to support people to<br />

remain living in their home with<br />

the individualised supports to meet<br />

their needs.<br />


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



Denise Amato was leading a very busy life in 2011, running a small business with her husband<br />

and looking forward to future travel plans, when, at the age of 56, she started experiencing<br />

fatigue and muscle weakness in her legs and the left side of her body. This, she would later<br />

come to realise, was the beginning of her journey with primary progressive multiple sclerosis<br />

(PPMS), the neurological condition she was diagnosed with two years later.<br />

Denise has lived in Albany most<br />

of her life and has always been<br />

a very active member of the<br />

community, spending a lot of time<br />

outdoors – walking, swimming and<br />

bodyboarding. Today, symptoms<br />

of reduced mobility and fatigue<br />

have meant taking a step back<br />

from some of the more highintensity<br />

activities. She recalls one<br />

of the hardest things to give up<br />

after her diagnosis was her regular<br />

involvement in ‘Granny Grommets’ –<br />

an over-50s women’s bodyboarding<br />

group who meet every Friday, rain,<br />

hail or shine. Happily, she remains<br />

a social member and is in regular<br />

contact with the group.<br />

Denise continues to swim<br />

recreationally, and in 2019 – along<br />

with a squad of her family and<br />

fabulous ‘swim buddies’ – raised over<br />

$14,000 for <strong>MSWA</strong> by participating<br />

in the annual <strong>MSWA</strong> Albany Swim.<br />

Until recently, Denise had avoided<br />

a traditional mobility walker but<br />

was delighted when her <strong>MSWA</strong><br />

Support Coordinator, Lisa, sourced<br />

a stylish, ultra-lite graphite design.<br />

“I’m very pleased with my new<br />

super-duper ‘oyster white’ walker,”<br />

laughs Denise.<br />

She credits <strong>MSWA</strong> with opening so<br />

many doors for her that wouldn’t<br />

have been accessible otherwise.<br />

“The thing I value the most about<br />

<strong>MSWA</strong> is that for the past seven<br />

years they have been the one and<br />

only constant in my journey. The<br />

facilities <strong>MSWA</strong> provide and the<br />

money they are contributing to<br />

research, I know from personal<br />

experience, make a real difference<br />

to the lives of ordinary people trying<br />

to come to terms with living with<br />

multiple sclerosis.<br />

“Before my diagnosis, I had been<br />

used to being independent and<br />

keeping active. It took me a long<br />

time to realise I could call on help<br />

and that I should not feel guilty<br />

about accepting it. For example,<br />

Maureen, the <strong>MSWA</strong> nurse in<br />

Albany, encouraged me to sign up<br />

to the NDIS before I turned 65. I<br />

didn’t think it was appropriate for<br />

me, but it opened up a whole lot of<br />

doors for us. My husband had polio<br />

as a child, so he is also living with<br />

a disability. An NDIS plan enabled<br />

us to get a yard man, which is a<br />

fantastic help.<br />

“I have a very supportive<br />

family and close friends<br />

whom I value greatly and<br />

<strong>MSWA</strong> have taken a lot of<br />

the stress off them as I can<br />

source help independently.”<br />

Currently, Denise accesses <strong>MSWA</strong>’s<br />

physiotherapy, yoga and nursing<br />

services. She also attends the annual<br />

retreat in the Great Southern, which<br />

she adores. “I love the yearly <strong>MSWA</strong><br />

Camp in Denmark. Everything<br />

is taken care of for us. It’s a little<br />

bit of a break and allows some<br />

respite for family. I probably think<br />

about MS less than I ever do when<br />

I’m on those camps. They are so<br />

much fun.”<br />

Denise welcomed the recent<br />

announcement that <strong>MSWA</strong> have<br />

begun constructing a new stateof-the-art<br />

$7M facility in Albany.<br />

A purpose-built Services Centre<br />

will continue to provide <strong>MSWA</strong>’s<br />

regional Clients with services such<br />

as physiotherapy, occupational<br />

therapy, nursing, counselling,<br />

speech, dietetics and outreach.<br />

“Everyone’s very excited about<br />

the new Centre. I go regularly<br />

to physiotherapy at the current<br />

Lotteries House location. It’s a<br />

shared facility and the physios<br />

operate out of a couple of small<br />

rooms, so it’s very constrained.<br />

They do an amazing job with<br />

the space they have but the new<br />

dedicated location will make a huge<br />

difference.”<br />


In addition, an adjoining High<br />

Support Accommodation Facility<br />

will feature 10 fully accessible<br />

units to cater for <strong>MSWA</strong>’s high<br />

support Clients, with 24-hour care<br />

provided on-site. It will be the first<br />

accommodation facility of its kind<br />

in the Great Southern.<br />

“The opportunity for people living<br />

with neurological conditions in<br />

Albany to have specialised living<br />

facilities is so important,” explains<br />

Denise. “There’s people younger<br />

than me who are currently in<br />

nursing homes because there’s<br />

nowhere else to go.”<br />

“Nobody living with MS really<br />

knows what the future holds<br />

for them, but I do know that<br />

I am in very good hands with<br />

<strong>MSWA</strong> and that means a lot.”<br />

<strong>MSWA</strong> Client, Denise Amato, at home in her garden.<br />


The <strong>MSWA</strong> Quality and Compliance Team now comprises of two new staff – Alison Cox, Manager Quality<br />

and Compliance, and Michelle John, Complaint Liaison & Compliance Coordinator.<br />

Quality and compliance are an essential function of any organisation – especially those providing care and<br />

services to people. <strong>MSWA</strong> is committed to ensuring that the care and services provided to our Clients is<br />

safe and of the highest possible standard.<br />

We always want to hear what is working well, and what we could look to improve on. The <strong>MSWA</strong> Quality<br />

and Compliance team are a small team who, with the support of Clients, staff, and managers, identify our<br />

strengths and what areas require development. Even if we are providing care and services to a very high<br />

standard, there are always things that we can do better.<br />

<strong>MSWA</strong> also needs to demonstrate to both our Clients and external governing agencies that we meet certain<br />

standards, such as the NDIS Practice Standards and the Aged Care Quality Standards. These standards<br />

have been put in place to ensure all organisations delivering disability or aged care services provide high<br />

quality and safe supports to Clients.<br />

<strong>MSWA</strong> is committed to putting all the necessary safeguards in place to allow our staff to provide the very<br />

best care and services, and our Quality and Compliance team are working hard with all the teams to make<br />

sure this continues!<br />



MEN,<br />

LET’S<br />

TALK<br />


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

The COVID-19 pandemic has impacted every Australian in some way. However, in broad<br />

terms, men especially are still very reluctant to speak up about the stresses and pressures<br />

that they are experiencing.<br />

Everyone has an understanding<br />

about physical sensations, for<br />

example a headache or sprain,<br />

but many men grow up never<br />

being able to acknowledge mental<br />

health changes. When we go<br />

through significant changes, as<br />

with chronic health conditions, we<br />

can experience mood changes,<br />

feelings of anger and intolerance,<br />

difficulties sleeping or feeling<br />

unmotivated. You may not feel like<br />

you can concentrate as well as usual<br />

or you forget things. Many people<br />

feel something isn’t quite right but<br />

don’t connect it to anxiety.<br />

There is nothing inherent about<br />

men or masculinity that would<br />

say men don’t experience mental<br />

health challenges, or that they can’t<br />

talk about it. It is experiences and<br />

society’s rules that create this certain<br />

way of thinking. If you are a man<br />

struggling with your mental health<br />

or experiencing anxiety, it does not<br />

make you any less of a man – all men<br />

go through something in some way.<br />

It is so important to be kind to<br />

yourself and be able to say it’s okay<br />

to feel these things and it’s okay to<br />

get support.<br />

Talk it over – either with a<br />

mate or maybe touch base<br />

with a qualified Counsellor<br />

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

If you have a mate who seems to be<br />

struggling, it can be a challenge to<br />

know how to broach the subject.<br />

There is research that has shown<br />

that men find it easier to have these<br />

conversations when they are sitting<br />

side by side. Beyond Blue call it<br />

‘Chat Lap’ (link for website is below)<br />

– encouraging men to talk whilst<br />

side by side in the car. Think of other<br />

activities that you and your friends<br />

or family enjoy, such as fishing,<br />

walking, cooking, that would<br />

enable you to bring up challenging<br />

subjects in a less confronting way.<br />

Having a distraction can just make<br />

it feel less in-your-face.<br />

<strong>MSWA</strong> run an open Men’s Group<br />

at Kelmscott four times a year. We<br />

are also looking for expressions of<br />

interest from men in Mandurah to<br />

meet at the Mandurah Centre. We<br />

combine educational topics and a<br />

chance to connect with other men.<br />

If you are interested in either of<br />

these, please contact Michaela or<br />

Janice for more information.<br />

Men’s Group<br />

michaela.mundy@mswa.org.au or<br />

janice.petrovic@mswa.org.au<br />

Beyond Blue<br />

beyondblue.org.au/who-does-itaffect/men/looking-out-for-yourmates<br />



<strong>MSWA</strong> NURSING IN A<br />


As we reflect on what has been an extraordinary year in every industry and business, <strong>MSWA</strong> has<br />

continued to support people in the community living with neurological conditions.<br />

<strong>MSWA</strong> provides support to the<br />

Multiple Sclerosis (MS) clinics<br />

and Motor Neurone Disease<br />

(MND) clinics at various hospital<br />

locations across Perth including<br />

The Perron Institute, Fiona Stanley<br />

State Rehabilitation Centre, Royal<br />

Perth Hospital and St John of God<br />

Midland. At present, support is<br />

provided to at least nine MS clinics<br />

and three MND clinics weekly. In<br />

<strong>2021</strong> we will continue our efforts to<br />

expand this service for our Clients.<br />

An opportunity to collaborate with<br />

the clinics supporting individuals<br />

with other neurological conditions<br />

such as Parkinson’s has arisen and<br />

will be thoroughly explored.<br />

Role of Neurological Liaison Nurses<br />

at clinics<br />

The last six months has seen a<br />

huge shift in the Nursing team at<br />

<strong>MSWA</strong>. Not only have we expanded<br />

our scope of practice to include<br />

clinical nursing, but we have also<br />

progressively increased the number<br />

of nurses supporting clinics in<br />

the hospitals. Known as the<br />

Neurological Liaison Nurses (NLN),<br />

their role in the hospital clinics<br />

includes:<br />

/ Providing support to the<br />

neurologist during the clinic visit<br />

/ Providing emotional support to<br />

the Client during the consultation<br />

/ Assisting the Client with<br />

connecting to Allied Health<br />

Services and other health<br />

professionals where required<br />

/ Providing education and training<br />

related to MS medications<br />

/ Liaising with the Client’s GPs if<br />

and when necessary, in order<br />

to advocate for ongoing care in<br />

the home. Discussions related to<br />

symptom management can be<br />

had with the nurse during and<br />

after the clinic consultation.<br />

Once connected to a NLN,<br />

every Client is supported in the<br />

community as they journey<br />

together, from the time of diagnosis<br />

through to the later stages of their<br />

condition.<br />

Our aim in the <strong>MSWA</strong><br />

Nursing team is to continue<br />

to provide a quality service<br />

of support and education<br />

to our Clients living with a<br />

neurological condition,<br />

both in the clinic and<br />

community settings.<br />

To find out more about the<br />

clinics please speak to your<br />

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





Marie Harris has served as an <strong>MSWA</strong> volunteer for 30 years.<br />

“In 1989, I’d hardly ever heard of<br />

multiple sclerosis,” says Marie Harris.<br />

“I’ve learned a lot about MS over<br />

the years.”<br />

1989 was the year she moved from<br />

Perth to Bunbury to be closer to<br />

one of her daughters. “I didn’t have<br />

much to do down there, so when<br />

I saw an ad to be the secretary<br />

of the MS Society (now <strong>MSWA</strong>), I<br />

volunteered.”<br />

Back then, the team in Bunbury<br />

was very small. Initially, Marie’s role<br />

was connecting newly diagnosed<br />

Clients with the <strong>MSWA</strong> nurse in<br />

Perth. Then, she started helping<br />

with the Outreach group – making<br />

tea and accompanying Clients on<br />

picnics in the country.<br />

“The group in Bunbury really grew,”<br />

recalls Marie.<br />

She realised she wasn’t the only one<br />

who knew little about MS. “People<br />

knew nothing about it. I enjoyed<br />

raising awareness. I’d do the car<br />

raffle each year – going to the<br />

big shopping centres, sitting there<br />

on a little stool and people would<br />

donate.”<br />

It was also Marie’s task to deposit<br />

any money raised into the<br />

organisation’s bank account every<br />

Wednesday. “It was a very serious<br />

job – very important,” she laughs.<br />

She also started the Outreach<br />

group’s lottery club. “I started<br />

buying a lotto ticket every Saturday<br />

for the group. We occasionally had<br />

little wins but it was mostly for the<br />

fun of it. They’re still doing it now,<br />

someone took over.”<br />

In 2016, Marie received the state<br />

government’s ‘WA Volunteer Service<br />

Award’, given to individuals who<br />

volunteer for 25 years at a single<br />

organisation. “The medal I received<br />

is very dear to me,” she says. “I keep<br />

it in my jewellery box.”<br />

Marie was born and raised in Chile.<br />

She left to join the air force in World<br />

War II, which took her to Ceylon<br />

(now Sri Lanka) where she met her<br />

English husband. In 1968, the pair<br />

and their four children immigrated<br />

to Australia.<br />

Another impressive aspect of<br />

Marie’s life is her involvement in<br />

the mature age Masters swimming<br />

club in Bunbury, a group that she<br />

founded 30 years ago.<br />

“When I was living in Perth, I was<br />

really lonely for a time. I wanted<br />

to do something other than just<br />

sit and watch TV and go to sleep. I<br />

found out about a swimming club<br />

nearby. It was marvellous! They<br />

helped me with my swimming and<br />

we all formed strong friendships.<br />

Like Outreach, it was about people<br />

helping each other. When I moved<br />

down to Bunbury, I said, “There’s a<br />

pool here, there’s mature swimmers,<br />

why not?” So I started digging and<br />

finding people to join.”<br />

Three decades later, the group has<br />

over 70 members, and Marie has a<br />

large collection of medals for her<br />

swimming achievements in the WA<br />

State Masters Games, mostly for<br />

backstroke.<br />

Marie recently moved to Perth<br />

to live with daughter and son-inlaw,<br />

Carol and Dennis. At age 96,<br />

problems with her vertebrae mean<br />

she can no longer live alone.<br />

Lynda Whitton, who lives in<br />

Bunbury, first met Marie upon<br />

joining <strong>MSWA</strong> 25 years ago. The<br />

pair have had many adventures<br />

together over the years and remain<br />

firm friends.<br />


“She’s an inspiration,” says Lynda. “She was still<br />

competitively swimming at the age of 89. She ran<br />

with the Olympic Torch through Bunbury. I would<br />

like to think I’m as active and mentally alert as her<br />

at her age. So would ninety percent of the people<br />

at the <strong>MSWA</strong> hub in Bunbury. Since she moved to<br />

Perth last year, not a week goes by where someone<br />

doesn’t ask ‘have you heard from Marie?’”<br />

In 2018, Marie was recognised for<br />

her incredible 30 years of service<br />

to <strong>MSWA</strong>. “It was a lovely time,”<br />

she recalls. “Marcus Stafford was<br />

there. He gave the Certificate of<br />

Appreciation to me.”<br />

She says she misses Bunbury but<br />

that the memories stay with her. “I<br />

have fond memories of the people<br />

I met in the Bunbury Outreach<br />

group. They were all wonderful<br />

people. We helped each other.”<br />

L to R: Celebrating her 96th birthday with the Bunbury crew (2020),<br />

cuddles with a Client’s granddaughter (2010), Bastille Day at Bunbury Outreach (2017).<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 />






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


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

In November, we both attended the inaugural State Conference, organised by People<br />

with Disabilities WA (PWdWA). PWdWA plays a key advocacy role for both individuals and<br />

systemic issues.<br />

The conference was largely planned<br />

by a committee of people with<br />

disabilities and most sessions<br />

were presented by people with<br />

disabilities. It was certainly a fresh<br />

approach to attending a conference<br />

and one where we were made<br />

to feel welcome. Arrangements<br />

considered a full range of disabilities<br />

– from access for wheelchairs, to<br />

supports for those who were deaf,<br />

blind, as well as many other issues.<br />

The significant key speakers shared<br />

their life stories of achievement<br />

and overcoming adversity. Prue<br />

Hawkins, who created her own<br />

successful law firm here in Perth,<br />

was inspiring, as was Senator<br />

Jordan Steele-John (WA Greens<br />

Senator) who highlighted the<br />

disability rights movement, its<br />

achievements to date and areas for<br />

future focus. Samantha Jenkinson,<br />

the State Director, gave a detailed<br />

account of the new NDIS Quality<br />

and Safeguards Commission, and<br />

finally Dr Rita Kleinfeld-Fowell,<br />

professional advocate and disability<br />

discrimination lawyer working for<br />

Midlas (Midland Information Debt<br />

and Legal Advocacy Service), shared<br />

her life’s journey through adversity.<br />

A smaller organisation we became<br />

aware of was WA Individualised<br />

Services (WAis) which works<br />

in partnership with people,<br />

families, service providers and<br />

government to promote and<br />

advance individualised, selfdirected<br />

supports and services.<br />

It was difficult to choose between<br />

the many workshops on offer at<br />

the conference. We came away<br />

filled with information, energy, and<br />

excitement about what is out there<br />

to support people with disabilities.<br />

PWdWA website: pwdwa.org<br />

WAis website:<br />

waindividualisedservices.org.au<br />




Hello everyone, please allow me to introduce myself. My name is Marga and I am a<br />

physiotherapist who recently joined <strong>MSWA</strong>. I am currently finishing a post-graduate in<br />

Continence Physiotherapy at Curtin University.<br />

I am currently promoting bladder<br />

and bowel healthy habits. In this<br />

article, I would like to focus on<br />

bladder issues and some tips on how<br />

we can support these symptoms.<br />

Bladder function in neurological<br />

conditions<br />

MS, Parkinson’s and other<br />

neurological conditions can affect<br />

the nerves that connect your brain<br />

with your bladder, and this may<br />

produce a change in your ability to<br />

empty or store urine.<br />

What are the common symptoms?<br />

1. Issues with storage<br />

- Urgency: the need to urinate<br />

in a rush. For example, before<br />

opening the door at home<br />

- Frequency: the need to urinate<br />

regularly more than 6-8 times<br />

per day<br />

- Nocturia: needing to go to<br />

the toilet more than one time<br />

per night<br />

2. Issues with emptying<br />

Failure to empty your bladder<br />

completely. Some issues can<br />

include interrupted flow, poor flow,<br />

straining when emptying, dribble<br />

post emptying and needing to<br />

empty again immediately.<br />

3. Issues after emptying<br />

Incomplete emptying is the feel<br />

that your bladder is still full after<br />

urination.<br />

What does a physiotherapist<br />

ask or do during a continence<br />

assessment?<br />

We ask what symptoms are<br />

bothering you the most, as we want<br />

to focus on your individual goals.<br />

During your initial assessment,<br />

we ask questions in relation to<br />

your bladder symptoms, your diet,<br />

your current medication and your<br />

previous treatment.<br />

During the assessment, we may<br />

provide you with a bladder diary<br />

that you will have to complete at<br />

home for three consecutive days.<br />

This is a simple way of having a<br />

measurement of input versus<br />

output of your fluids. With your<br />

bladder diary information, we can<br />

determine if you have issues with<br />

storage or emptying and make a<br />

joint decision of what can help your<br />

symptoms.<br />

During examination, we can also<br />

perform a pelvic floor muscle<br />

examination.<br />

What can I do to help my symptoms?<br />

1. Bladder habits: including bladder<br />

retraining, avoiding bladder<br />

irritating foods and drinks,<br />

suppression strategies to calm<br />

your urgency.<br />

2. Pelvic floor muscle strengthening:<br />

if your main bladder symptom is<br />

leaking with coughing, sneezing,<br />

lifting, or moving between<br />

different positions, pelvic floor<br />

muscle strengthening can help<br />

your symptoms. It is common<br />

not to be aware of your pelvic<br />

floor muscles. In some cases,<br />

people find it hard to strengthen<br />

them correctly.<br />

Margarita Ruiz Martinez,<br />

the newest member of the<br />

<strong>MSWA</strong> Physiotherapy team<br />

3. A review with your <strong>MSWA</strong><br />

Neurological Liaison Nurse would<br />

be indicated if you are having<br />

symptoms of urine retention.<br />

In this case, your nurse will go<br />

through an assessment and<br />

treatment options.<br />

4. Further management: review<br />

with a specialist to discuss other<br />

options such as Botox.<br />

If you would like to book a<br />

continence physiotherapy review,<br />

please speak to your <strong>MSWA</strong> Nurse<br />

or Physiotherapist for a referral.<br />


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


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


<strong>Summer</strong> can be a tough time for people living with multiple sclerosis. Many people with<br />

MS find that when the body heats up they feel weaker and more fatigued. Strangely, I don’t<br />

like the very cold weather either. I have poor circulation and when it gets cold my feet feel<br />

freezing and it’s hard to warm them up. Consequently, I need to use my air conditioner (and<br />

Ugg boots!) to keep my house at a comfortable liveable temperature.<br />

During this summer, I went in my<br />

electric wheelchair down to the river<br />

as often as I could. I enjoy watching<br />

the black swans and getting some<br />

fresh air. I also have a school friend<br />

down there who operates a surf cat<br />

business. A million years ago I was<br />

at high school with Andrew, who<br />

reminisces we “ran the school”.<br />

Although Andrew and I were both<br />

prefects I think the school could<br />

have managed perfectly well to run<br />

itself without us!<br />

This summer also I was looking<br />

forward to my daughter Eleni and<br />

little grandson Henry coming over<br />

from Queensland for a visit in<br />

January. Unfortunately, a new case of<br />

COVID was identified in Queensland<br />

not long before they were due, and<br />

the WA government re-instated the<br />

hard border policy, which meant they<br />

had to cancel their trip. At least we<br />

have regular video chats and Henry<br />

now calls me “nanna” all the time. His<br />

other favourite word is ‘bin’. He has a<br />

fascination with wheelie bins. Eleni<br />

told me that just before Christmas<br />

their rubbish truck driver, seeing<br />

Henry watching the collection every<br />

week and noticing his excitement,<br />

gave him a toy wheelie bin of his own<br />

to play with. Eleni and Henry’s father<br />

Will bought Henry a little toy rubbish<br />

truck for Christmas, so now he can<br />

‘tip rubbish into the truck’ whenever<br />

he likes. It is his favourite game.<br />

I was really looking forward to seeing<br />

my little family, so of course I am so<br />

disappointed that they cannot now<br />

come over to WA. Eleni is pregnant<br />

again and due in June, so I am<br />

hopeful that restrictions will ease by<br />

then so I can travel later in the year to<br />

visit them. I find travel difficult and<br />

will have to put considerable effort<br />

into finding wheelchair accessible<br />

accommodation, as Eleni’s house<br />

is unsuitable. A friend of mine has<br />

promised he will accompany me<br />

on the trip to help, so that is bliss. I<br />

just hope that the virus stays out of<br />

Queensland till then.<br />

Many people are separated from<br />

their loved ones at this time. And all<br />

know it is so hard when we cannot<br />

visit. At least we have wonderful<br />

technology these days that allows<br />

us to stay connected.<br />

Back when I was a teenager, I grew<br />

up in Albany on the south coast of<br />

WA. My sisters and I all knew we<br />

would move to Perth when we<br />

graduated from high school as<br />

there was no tertiary education<br />

available in Albany. Now of course I<br />

can feel how my parents must have<br />

had to swallow their grief as one<br />

after another of their four daughters<br />

packed up and left home. Mind you,<br />

my father moved all the way from<br />

Greece to Melbourne when he was<br />

18 years old, and both my parents<br />

moved away from their families<br />

in Melbourne to Western Australia<br />

in the early sixties, so they<br />

couldn’t complain.<br />

In those days we kept in<br />

touch by writing letters<br />

and posting them!<br />

Remember letters? Hardly anyone<br />

does that any more. About once a<br />

month my mother would ring me<br />

and we would have a chat, but in<br />

those days STD phone calls were<br />

very expensive and were kept<br />

short. Some people complain about<br />

our obsession with smart phones<br />

and social media, but I love the<br />

increased connectivity it brings.<br />

I regularly keep in touch with<br />

my daughter, and my cousins in<br />

Queensland, Victoria and England<br />

by social media and we know each<br />

other better now than we ever<br />

did before.<br />

Nevertheless, there is nothing quite<br />

as lovely as seeing someone face<br />

to face. I am counting down the<br />

minutes till I can see my daughter<br />

and grandchildren later in the year.<br />

Please, fellow-Australians, stay at<br />

home and wear masks!<br />








As part of our commitment to high quality care and services at <strong>MSWA</strong>, we have created a<br />

brand new role within the Community Support team. The Community Team Leader (CTL)<br />

position has been rolled out across the metropolitan area over the past few months to work<br />

closely with our 300 plus dedicated Community Support Workers (CSWs).<br />

Yes, it is another acronym to<br />

remember! But what it boils down<br />

to is improving the way our teams<br />

work and the way they are able<br />

to deliver service and support in<br />

your home.<br />

To ensure quality care in the<br />

community is achieved, <strong>MSWA</strong><br />

recognises that it is essential to<br />

support all staff, particularly those<br />

who are working autonomously<br />

in the community. This dynamic,<br />

proactive new team will focus<br />

on mentoring, supervision, and<br />

training of all the CSWs to meet<br />

individual Client needs. The team<br />

will have a presence both in Clients’<br />

homes as well as in the community,<br />

focused on supporting our staff.<br />

A key component to the delivery<br />

of quality services is the ability to<br />

provide opportunities for new and<br />

existing staff of learning through<br />

buddy shifts (two or more care<br />

support workers, working together<br />

to learn and observe). Buddy shifts<br />

not only ensure standards of care<br />

by new staff are met, they also allow<br />

staff to work with other Clients,<br />

providing relief support during<br />

periods of illness or holidays taken<br />

by our CSWs. This approach ensures<br />

all that all our Client needs are met.<br />

The Rostering Coordination team<br />

will continue to oversee the<br />

bookings of services for all our<br />

Clients. They will work closely with<br />

the CTLs as well as the Client Liaison<br />

Coordinators, to ensure services are<br />

provided and CSW are matched to<br />

our Clients. We are embedding a<br />

culture of enhanced collaboration,<br />

teamwork and partnership to<br />

support the individualised needs of<br />

all our Clients.<br />

We have already received<br />

positive feedback regarding<br />

the CTL role from the Care<br />

Support Workers who<br />

have commented on the<br />

wonderful support, and<br />

response to regular<br />

meetings has also<br />

generated lots of feedback.<br />








Our Newly Diagnosed (MS) information evening made a comeback last year at two locations,<br />

<strong>MSWA</strong> Belmont and <strong>MSWA</strong> Rockingham. Our newly diagnosed Clients were invited to bring<br />

their family or support person for an informal opportunity to meet with others in a similar<br />

situation and the chance to ask our experienced staff any questions.<br />

Our Rockingham Centre had 14<br />

people in attendance, as well as six<br />

<strong>MSWA</strong> staff: Jill Crombie (Senior<br />

Neurological Liaison Nurse), Janice<br />

Petrovic (Counsellor), Sharon<br />

Mundy (Senior Physiotherapist),<br />

Misty Reinkowsky (Dietitian), Ann<br />

Hall (Neurological Liaison Nurse)<br />

and Dajana Tesevic (Counsellor &<br />

Coordinator of Health Education<br />

and Peer Support).<br />

The focus of the information<br />

evening is to create a safe place for<br />

Clients and their support persons,<br />

to listen to others and share<br />

experiences of living with MS. The<br />

group also provides a place to seek<br />

support from those with a lived<br />

understanding of MS, and <strong>MSWA</strong><br />

staff members. Feedback from<br />

attendees at this recent session, was<br />

that the group was a way for them<br />

to gain new information about MS,<br />

listen to others’ experiences and to<br />

participate in the support system.<br />

Our Peer Volunteers, Vanessa<br />

Baker and Warren Henry, were in<br />

attendance to share their personal<br />

stories of being diagnosed with MS<br />

and their journey so far. They spoke<br />

about how they manage their<br />

symptoms, how they maintain their<br />

wellbeing and positive outlook on<br />

life with MS over the years.<br />

Feedback from attendees included:<br />

“I have learned strategies for<br />

moving forward and placing<br />

importance of my own journey.”<br />

“I found it very useful having peer<br />

support people living with MS<br />

to come and speak to us, as it<br />

puts things into perspective and<br />

reassures you are not alone.”<br />

“The content was most beneficial<br />

for my sister to have a better<br />

understanding of MS. My sister now<br />

feels comfortable knowing that<br />

there is a lot of support for me and<br />

others who are living with MS.”<br />

With very positive feedback<br />

from the groups, we will<br />

be holding more Newly<br />

Diagnosed information<br />

evenings in <strong>2021</strong>, so keep<br />

an eye out on our <strong>MSWA</strong><br />

website under Programs,<br />

Workshops & Events.<br />

Alternatively, if you are interested<br />

in attending or would<br />

like to<br />

provide any feedback, please phone<br />

Dajana Tesevic on 9365 4858 or<br />

email dajana.tesevic@mswa.org.au<br />


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





<strong>MSWA</strong> FAMILY FUN DAY<br />

In November we welcomed over 50 families to our first <strong>MSWA</strong> Family Fun Day at Caversham<br />

Wildlife Park. It was the perfect venue. We fed the kangaroos, cuddled the wombats, and got<br />

up close and personal with the koalas, reptiles and other animals.<br />

As it warmed up, we retreated to<br />

the shaded area for refreshments<br />

while the kids lined up for face<br />

painting and made some giant<br />

bubbles. It was not long before they<br />

were moving off again to catch<br />

the penguin feeding and the farm<br />

show. Then it was time for lunch,<br />

which kept the kids quiet for a little<br />

while, and one last round of the<br />

wildlife park before home time.<br />

The Family Fun Day was made<br />

possible by the children and<br />

families who participated in the MS<br />

Readathon in August last year. The<br />

5,000 children who participated<br />

raised over $300,000 to help<br />

<strong>MSWA</strong> fund initiatives that support<br />

children of families living with a<br />

neurological condition in WA.<br />

It was great to meet all the lovely<br />

families who came along and<br />

was very rewarding for my sevenyear-old<br />

to see the result of her<br />

MS Readathon fundraising efforts.<br />

Everyone appeared to enjoy<br />

themselves and we look forward to<br />

welcoming you all again to the next<br />

one. We are already planning the<br />

next event, so stay tuned.<br />

If you and your children or<br />

grandchildren would like to take<br />

part in our future events, email me<br />

at family.events@mswa.org.au<br />

You can also register your interest<br />

to get involved in the <strong>2021</strong> MS<br />

Readathon – join the fundraising<br />

fun and help us make more <strong>MSWA</strong><br />

Family Fun Days possible!<br />







NEWS<br />




Hello and welcome to <strong>2021</strong>, where we start afresh and go into the year full steam ahead.<br />

I hope you all enjoyed your well-earned break and are starting to get into the swing of<br />

things again.<br />

I took my yearly pilgrimage to<br />

Hamelin Bay (near Augusta) with<br />

my daughter and four of my little<br />

grandies in tow. Such a beautiful<br />

spot. If you haven’t been before it<br />

is well renowned for the stingrays<br />

that cruise up and down along the<br />

water’s edge waiting to be fed fish<br />

offcuts by those who dive and fish<br />

daily. People take joy and wonder in<br />

feeding them and the size they are.<br />

It is always extremely important for<br />

me to welcome you all back and<br />

thank you for last year’s volunteering<br />

efforts and send out my gratitude<br />

for the future volunteering efforts<br />

in <strong>2021</strong>. I really rejoice in our fortune<br />

in having so many dedicated and<br />

long-serving volunteers. You are<br />

truly appreciated. For those who<br />

are joining us for the first time this<br />

year, I send out a big welcome and<br />

offer you our thanks for joining the<br />

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

Hopefully, all regular celebrations<br />

will be running smoothly again<br />

this year and we may be able to<br />

host you at our Annual Volunteers’<br />

Luncheon currently planned for May.<br />

Details will follow shortly, and if it is<br />

like all our previous luncheons, the<br />

company, atmosphere, and food<br />

will be truly amazing.<br />

In December, I attended a<br />

Volunteering Manager Network<br />

meeting which was held at the<br />

new Kings Park volunteer hub call<br />

Wanju Mar (‘welcome hand’). It<br />

was a beautiful new building with<br />

an outdoor area and BBQs for<br />

volunteers to sit and come together.<br />

It is always lovely to see where other<br />

volunteers go and see what they<br />

do. I had not been to Kings Park<br />

for some time and it was nice to<br />

have the awesome view of our city<br />

laying out before me. When it cools<br />

down a bit, I would suggest a visit to<br />

check out our beautiful city that is<br />

the heart of WA.<br />

Depending on how the next few<br />

months pan out, Camps will still<br />

be running. Hopefully I will have a<br />

better idea of dates for the <strong>2021</strong>/22<br />

camps and retreats for our Clients<br />

and carers. Watch this space for<br />

dates as they arise.<br />

It is always so wonderful<br />

talking to you all, please<br />

take care in this precarious<br />

environment of ours and<br />

be safe in all you do.<br />

If you have any questions, ideas<br />

or feedback, please email me<br />

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

or any suggestions are welcomed<br />

and valued.<br />

That’s it from me for now.<br />

Until next time.<br />




In 2020, <strong>MSWA</strong> introduced a Men’s Outreach Group, held every Wednesday morning at the<br />

<strong>MSWA</strong> Rockingham Services Centre.<br />

Nicola Ryan, Senior Outreach<br />

Coordinator, explains that the group<br />

was started after the COVID-19<br />

lockdown last year.<br />

“We needed to make the existing<br />

Friday group smaller due to the<br />

limited space for social distancing,”<br />

says Nicola. “Some of our male<br />

Clients were already attending<br />

physiotherapy on a Wednesday so<br />

the opportunity arose to schedule<br />

a men’s Outreach group on the<br />

same morning.<br />

“It’s been fantastic to see how the<br />

men have formed friendships. They<br />

have been able to reach out to other<br />

men who are in a similar situation,<br />

with the support of the friendly<br />

Outreach staff.”<br />

David Perry, an <strong>MSWA</strong> Client who<br />

was diagnosed with MS in 2012,<br />

says, “It took me a while to feel ready<br />

to sign up for the Outreach group.<br />

What helped me was coming<br />

into the Rockingham Centre for<br />

physio and getting to know the<br />

guys slowly that way. Once I joined<br />

the group, everyone was so great.<br />

We don’t load each other with<br />

problems. It feels normal to chat or<br />

joke, knowing that everyone is in a<br />

similar situation.”<br />

<strong>MSWA</strong> runs many different<br />

Outreach groups and welcomes<br />

all Clients to attend. To enquire<br />

about joining this group or<br />

your local group, please phone<br />

Nicola Ryan on 9365 4830, or email<br />

nicola.ryan@mswa.org.au<br />

“It’s good to get together with<br />

people in a similar situation.<br />

We can all relate so well.” – David<br />

“On Wednesdays it’s boys’ day at<br />

Outreach. It’s good to meet up and<br />

share stories.” – Philip<br />

“I come for physio then stay for<br />

lunch with the Outreach crew.” –<br />

Charles<br />

“I’m younger than these guys,<br />

but we’re alike in other ways.<br />

And it’s a great feed!” - David<br />

“We drink tea and coffee. And<br />

there’s craft, board games and<br />

conversation.” – Graham<br />

“It’s a great crowd at<br />

Outreach.” – Peter<br />




Whilst we have been unable to have large gatherings at Treendale Gardens due to government<br />

restrictions, we did our best to celebrate in December, including a small Christmas party and<br />

other holiday activities. ‘Pin the beard on Santa’ was very popular!<br />

All the residents and respite Clients,<br />

as well as some family members,<br />

staff and volunteers, attended our<br />

annual pre-Christmas luncheon,<br />

with special guests from Perth –<br />

Marcus Stafford and Sue Shapland.<br />

Whilst our accommodation<br />

facility is currently at capacity,<br />

we often have vacancies in our<br />

homely respite facility as well as<br />

our wonderful 3-bedroom holiday<br />

unit. If you would like to hear<br />

more please contact me or<br />

Linda Kidd on 9725 9994 or email us<br />

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





Whilst it seems so long ago, we would like to share our Christmas event with you. It was a<br />

smaller affair than usual, but residents, families, and staff enjoyed a well-deserved Christmas<br />

celebration that finished off a very challenging 2020. Following the months of limited<br />

socialisation, social distancing and frequent monitoring of the COVID-19 status, the chance<br />

to relax and enjoy each other’s company for the evening was welcomed by all who attended.<br />

Our Christmas lights were enjoyed<br />

by the entire Wilson neighbourhood,<br />

with passers-by slowing down<br />

to look at the colourful display.<br />

The evening included a variety of<br />

delicious foods and treats, light<br />

refreshments, the traditional raffle<br />

and many prizes. The raffle raised<br />

just over $195 and will be spent on<br />

items that will benefit our residents.<br />

The highlight of the evening was<br />

the photo ‘big screen’ display of<br />

the residents and staff giving their<br />

own personal Christmas wishes in<br />

English and their native languages.<br />

The photos showcased the<br />

residents’ participation in various<br />

activities throughout the year,<br />

with some very funny moments<br />

captured on film, bringing laughter<br />

and tears to family and staff.<br />

Fern River Manager Danuta<br />

Figurska would like to thank the<br />

staff and residents who participated<br />

in, and contributed to, the evening<br />

which was a great success. Everyone<br />

is looking forward to Christmas <strong>2021</strong><br />

and we are all wondering what<br />

we will be planning to take the<br />

celebrations to the next level!<br />


MANAGER –<br />





WEST.<br />

<strong>MSWA</strong> TREENDALE IS NOW TAKING BOOKINGS FOR <strong>2021</strong>.<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


WHAT’S ON<br />

<strong>MSWA</strong> Client Sharon Murray, with<br />

her two sons David and Mathew,<br />

and their friend Trent<br />

ALBANY<br />

SWIM<br />

<strong>MSWA</strong> ALBANY SWIM<br />

15 May <strong>2021</strong><br />

We're very excited to let you know<br />

that the annual <strong>MSWA</strong> Albany Swim<br />

is back for <strong>2021</strong> and is coming up<br />

on Saturday, 15 May at the Albany<br />

Leisure and Aquatic Centre. As you<br />

may know, the <strong>MSWA</strong> Albany Swim<br />

is an amateur swimming event<br />

that encourages teams to swim the<br />

most laps in a set 8-hour period. It's<br />

a fantastic, family-friendly event<br />

that is suitable for swimmers of<br />

all ages and experience levels.<br />

However, there's more than just<br />

swimming on the day, with plenty<br />

of competitions, activities and<br />

games – including the very popular,<br />

annual Inflatable Race!<br />

For more information, or to sign<br />

up, just visit the <strong>MSWA</strong> Albany<br />

Swim website: mswaswim.org.au<br />

STEP UP FOR <strong>MSWA</strong><br />

20 June <strong>2021</strong><br />

Step Up for <strong>MSWA</strong> challenges<br />

you to climb 1,103 steps to the top<br />

of Perth’s tallest building – once,<br />

twice, or even multiple times (new<br />

for <strong>2021</strong>!).<br />

The big event takes place on Sunday<br />

20 June, and there is even a special<br />

Mini Climb challenge (435 stairs)<br />

designed exclusively for children<br />

(aged 6 and over).<br />

Join us at Central Park this June<br />

and challenge yourself to reach<br />

new heights, whilst making a real<br />

difference for people living with all<br />

neurological conditions.<br />

Find out more at:<br />

stepupformswa.org.au<br />


14 November <strong>2021</strong><br />

Are you ready to take the plunge<br />

with #Team<strong>MSWA</strong> this November?<br />

The Central Park Plunge offers<br />

a unique opportunity to abseil<br />

220 metres down Perth’s tallest<br />

building, Central Park Perth, while<br />

making a real difference to the<br />

thousands of people living with<br />

all neurological conditions here in<br />

Western Australia.<br />

It’s a great opportunity to get<br />

together with family and friends<br />

to conquer a once-in-a-lifetime<br />

challenge. With 48 plunge spots<br />

available on Sunday, 14 November,<br />

we’d love you to join our team!<br />

For more information, or to<br />

sign up, get in touch with the<br />

<strong>MSWA</strong> Events team today –<br />

events@mswa.org.au or 6454 3131.<br />



Did you know that since the<br />

introduction of Containers for<br />

Change in October, over 168,427,763<br />

containers have been returned in<br />

WA? This is simply amazing – and<br />

what better time to add to this<br />

number! Let’s collect and return<br />

our own containers and make a<br />

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

To find your closest location<br />

and learn which containers are<br />

eligible for return, check out the<br />

Containers for Change website:<br />

containersforchange.com.au/wa/<br />

Simply select ‘<strong>MSWA</strong>’ by<br />

scanning the barcode below,<br />

or enter our scheme ID:<br />

C10268744.<br />

The funds will come straight<br />

through to us, ready to start<br />

making a real difference to<br />

people living with neurological<br />

conditions here in WA.<br />




Small Christmas celebrations were held at our Outreach centres during December 2020.<br />

The Albany Outreach enjoyed a<br />

superb Christmas morning tea<br />

with Caroline Clarke-Smith at the<br />

helm. It was a great turnout on<br />

the day with many laughs shared<br />

around the tables.<br />

The Beechboro Outreach celebrated<br />

Christmas by holding a Monday<br />

(Eastside) party and Friday<br />

(Northside) party, with many<br />

dressing up for the occasion. Father<br />

Christmas even paid a visit on both<br />

days, thanks to the Coordinator<br />

Chrystal for stepping into his shoes!<br />

For many years these two groups<br />

have visited local restaurants for their<br />

Christmas celebratory lunch and this<br />

year the cook Brenda ‘brought the<br />

restaurant to them’. The menu was<br />

a traditional hot Christmas lunch.<br />

In-home Christmas parties are<br />

going to be remembered with fond<br />

memories for a long time to come.<br />

Bunbury was the place to be on 16<br />

December, where the atmosphere<br />

was buzzing with the sounds of<br />

Mr and Mrs Claus singing their<br />

hearts out to the group. The<br />

special Christmas morning tea<br />

was a delight, while the singing of<br />

Christmas carols was also a great<br />

celebration of the day.<br />

Rockingham ‘rocked’ the week<br />

away having three separate parties<br />

for their groups. The Physio team<br />

joined forces with the Outreach<br />

staff to create a morning of party<br />

games while Clients were doing<br />

their exercises. The highlight<br />

was the amazing lunch provided<br />

by Rosemary. Many said this was<br />

the best Christmas lunch they had<br />

ever had!<br />

Wilson Outreach had a week of<br />

small parties that proved to be heaps<br />

of fun for everyone who attended.<br />

Many games were organised<br />

throughout the week, with many<br />

Clients taking home a small gift.<br />

Games included Christmas bingo<br />

and pass-the-parcel. Lunch was a<br />

buffet style each day, cooked and<br />

prepared by Justine and her everwilling<br />

volunteers.<br />

Our Outreach Clients are looking<br />

forward to the various events at<br />

all our Centres throughout <strong>2021</strong>.<br />

There is no doubt that the <strong>MSWA</strong><br />

staff in all the Centres will continue<br />

to provide another great year<br />

of creative activities for the<br />

Outreach groups.<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 />


Whatever your<br />

neurological condition,<br />

whatever your needs,<br />

our team of nurses, counsellors,<br />

speech pathologists,<br />

care support workers,<br />

occupational therapists<br />

and more will be right<br />

there by your side.<br />

Get your best from the<br />

NDIS at mswa.org.au<br />


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