MSWA Bulletin Magazine Autumn 2019

NDIS update | 2019 camps | Health education and peer support groups | Fundraising news

NDIS update | 2019 camps | Health education and peer support groups | Fundraising news


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MSWA Member Kate Gild in her new home at Butler’s Supported Accommodation facility


2019 CAMPS




NURSING Our MS nurses are usually the first point of contact after the neurologist’s

diagnosis of MS. We’re committed to providing holistic supports; providing a greater

understanding of what to expect.

Lou Hatter, MS Specialist Nurse: 9365 4888 or Community Nurse: 9365 4888




29 Parkhill Way (08) 9365 4888

Fax (08) 9451 4453

Freecall 1800 287 367

See Health Team Dept contacts on this page





Nicola Washington: 9365 4840


Manager Community

Care Programs 9365 4851

NDIS TEAM 9365 4824


Wilson Outreach (Mon-Thurs): 9365 4830

Beechboro Lodge (Mon, Fri): 9377 7800

Southside Outreach (Fri): 9592 9202

Albany Outreach (Fri): 9841 6651


1 Mason Street, Davenport 6454 2800


1/21 Cammilleri Street 9754 2320


Manager, Chris Rush: 9385 9574


Manager, Danuta Figurska: 9356 2747


Manager, Jayne O’Sullivan: 9331 5780



50 The Boulevard, Australind

Manager, Linda Kidd: 9725 9209



245 Butler Boulevard, Butler

Manager, Claudia Taylor: 9365 4888


If you would like to comment on anything

you read in this Bulletin please email


or write to

MSWA, Locked Bag 2,

Bentley DC WA 6983

The Bulletin can also be viewed at



Greg Brotherson (Editor), Marcus Stafford (CEO),

Paul Cavanagh, Sue Shapland, Ros Harman,

Libby Cassidy, Caitlin Skinner, Sandra Wallace,

Narelle Taylor, Leonie Wellington, and Dawn Burke.

The Editor welcomes unsolicited submissions.

All articles are subject to a reviewing process.

The views expressed are those of the Authors

and do not necessarily reflect the view of

MSWA’s staff, advisors, Directors or officers.

PHYSIOTHERAPY Our team aims to provide treatment interventions to develop and maintain

mobility and function. Our Physiotherapists are experts in movement and function, and work in

partnership with you to attain the highest possible level of independence.

Dave Hathorn, Manager: 9365 4837 or Physiotherapy Department: 9365 4834

OCCUPATIONAL THERAPY Occupational Therapists enable Members, and Clients,

to continue their work and other interests for as long as possible through advice, aids and equipment.

Occupational Therapy Department: 9365 4888

SPEECH PATHOLOGY Our Speech Pathologists provide support by assessing, diagnosing

and creating individualised treatment programs for Members who experience swallowing and/or

communication difficulties. We equip Members with information and strategies to promote better

communication and safe swallowing.

Speech Pathology Department: 9365 4888


Talking with a Counsellor creates a safe, respectful and confidential environment for you

and those close to you to explore options, create change or gain understanding about your

life. Attending counselling with our tertiary qualified practitioners enables opportunity

for personal growth and exploration in a non-judgemental environment. We have a Peer

Support & Health Education Coordinator who organises peer connection & events and

supports health and wellness education services. She can be contacted on 9365 4858.

To make an appointment please call:

Lisa Papas, Manager: 9365 4836 or Main Counselling line: 9365 4811

SOCIAL WELFARE Social Welfare Officers assist people living with MS and their

families to access services and supports to remain living independently at home.

They specialise in case management, advocacy and sourcing funding options.

They provide information on benefits and entitlements through Centrelink and other

government departments. Monitor NDIS/WANDIS Services.

Kath Knights, Manager: 9365 4835

INDIVIDUAL OPTIONS We provide long-term and time limited in-home supports

including assistance with personal care for people with MS, to help them remain in their

homes. Care and supports are provided through a combination of funding from the

Disability Services, Department of Communities and our own fundraising efforts.

We manage both DSC and NDIS individually funded care packages.

Aileen Ward, Manager: 9365 4851 for more information.

THE NDIS TEAM We can help answer all NDIS questions.

Our experienced team can help determine whether you may be eligible for NDIS support

and assist you with your application. This includes developing an individual plan that

best suits your needs. We support people with all neurological conditions including

MS, Stroke, Parkinson’s Disease, Huntington’s Disease, Acquired Brain Injury and

Motor Neurone Disease, to name a few.

Geoff Hutchinson, Manager NDIS Business Development: 9365 4879

CAMPS & RECREATION MSWA provides separate recreation camps for Members,

carers, and families, primarily funded by Lotterywest, and for a nominal cost to participants.

These camps provide a break from daily routines, and strengthen friendships and

support networks.

Coordinator for Camps & Recreation: 9365 4843

DIETITIANS are university-qualified nutrition experts who promote general health and

disease prevention/management through dietary changes. They provide evidence-based

dietary counselling and education, empowering individuals, with practical strategies,

to meet their goals and improve health, wellbeing and independence.

Dietitians Department: 9365 4888

On behalf of the Editorial Committee, welcome to your

first Bulletin for the year. We have pleasure bringing all

the latest news to you, but here it is all about us and you.

We need your help.

Every part of the organisation is subject to an audit and

refreshing, and the Bulletin magazine is no exception.

We think Bulletin is pretty good but of course we are biased!



















NOVEMBER 2018 17

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we would also love to hear from our readers. How is the

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Please let us know by emailing us at: bulletin@mswa.org.au

2019 CAMPS 18

















“It always seems impossible until it's done.”

Nelson Mandela.

From the desk of the CEO

“Nothing great was ever achieved without enthusiasm.”

Ralph Waldo Emerson.

A message from the General Manager –

Strategic Supports and Residential Options


Welcome to the first edition of the 2019 Bulletin magazine.

In many respects this quote defines our journey with the

National Disability Insurance Scheme (NDIS), which continues

to roll out across the State. It’s a lot of work for our Customers

but it will be worth it once you have your plan in place.

I’m proud to announce the opening of our newly built $8

million Services Centre and Supported Accommodation

Facility in Butler.

Sue Shapland, General Manager – Strategic Supports &

Residential Options will give our Members a warm welcome

to Butler in this edition and you will get to hear from MSWA

Member, Kate Gild who was the first resident to move into her

new home there.

Recognising the large proportions of our State, we are always

considering how we can cater to all of our regional Members.

MSWA is proposing to build a new Services Centre and High

Support Accommodation facility in Albany which is currently

in the planning and proposal stage.

These Centres could not be built without the strong foundations

of our ongoing commercial activities and financial success.

We have a new General Manager – Member and Client

Services, Nicola Washington who has a great wealth of

experience and will manage our continued growth in Member

and Client Services.

With three quarters of the budget year behind us, I am pleased

to report that our $3 million investment into neurological

research is contributing to fantastic results and we will keep

you updated as the research progresses.

I am pleased to announce MSWA’s involvement with another

leading WA not-for-profit, the West Australian Symphony

Orchestra (WASO), for their 2019 season. MSWA will be

partnering with WASO for their ‘Under 30s’ program, which

will allow anyone under the age of 30 to pay just $25 for

tickets to a range of concerts across the 2019 program.

Our partnership will also provide benefits and special offers

for our MSWA Members throughout the season. This will

include access to special performances as well as a standard

MSWA’ discount, to name just a few of the benefits!

It has been long understood that music is powerful! We now

know that the benefits of music extend to the wellbeing of

motor and cognitive skills and overall brain health. It is very

fitting therefore, for us to partner with WASO in helping

them make music more accessible to the younger market,

particularly at a time when more and more young people’s

lives are touched by the effects of a neurological condition.

The results are in for the MSWA reginal events Albany Ride

and Albany Swim, which saw over 300 participants raise

more than $50,000. The Great Southern region has once

again demonstrated their support for people living with

neurological conditions. Congratulations and thank you for

your continued support.

Our largest fundraising initiative, the Mega Home Lottery,

once again sold out in a record number of weeks earlier this

month. I would like to thank all of our dedicated staff involved

who deliver outstanding results for our Customers, and our

generous supporters who purchase tickets.

As MSWA continues to support people living with all

neurological conditions, the need for more tailored and

larger premises is needed. Our time in the leased property

in Bentley has now come to an end and Belmont is our new

home from April.

Initially it will provide a base for the Administration, Marketing

and Finance personnel, and Member and Client services

equipment will be stored in the warehousing facility already

on the land. Over time, the premises will become dualpurpose

with extended Member and Client services being

made available in the first instance to the newly diagnosed

and low support Members and Clients.

World MS Day is fast approaching on Thursday, 30 May and

MSWA will once again have an opportunity for you to get

involved. Plus, our annual Step Up for MSWA (the stair-climb

of Perth’s tallest building) is Sunday, 30 June.

Until next time!

I recently found some great quotes by Ralph Emerson, very

worth a Google search!

I think this quote is very relevant for us at MSWA. We have

achieved, and will continue to achieve, great success driven

by enthusiastic, passionate and caring staff and volunteers

across the whole organisation.

You may notice my role title has changed? Due to ongoing

expansion across all parts of Member and Client Services,

particularly over the past three to five years, the General

Manager role became too big for one person. We have

strategically divided the role and welcomed Nicola Washington

as the General Manager Member and Client Services, in

November last year.

My new role now focuses on key aspects of Safety and

Quality, Strategic projects including the allocation of Research

funding, and our expanding Residential Options including

accommodation and respite.

Our teams have been busy as we have opened the 10-unit

accommodation facility at Butler; what an amazing place it is.

Thanks to Andrea Taylor who contributed to most aspects of

the facility, including the design and décor which has turned

it into a home. Sandra Wallace played a major role in fit out

as part of her Project Management role and the results are

gratifying. Everyone who visits, and of course the residents

and their families and friends, are blown away by the design

and set out. It’s pretty impressive but more importantly, the

residents love their new homes and the support provided by

our onsite staff.

Albany is our next location for another major build featuring

another Services Centre and High Support Accommodation

facility. We will keep you posted regarding the timelines once

we have a start date.

Of course, building these Centres wouldn’t be possible

without the ongoing success we experience, through hard

work and sound financial management, through our Lotteries,

events, and investments. We can buy the land and build these

Centres to our own design, which really is quite unique in our


Our team will be working hard to ensure we comply with

the National Disability Insurance Scheme (NDIS) Quality

and Safeguarding Framework which is expected to commence

in 2020.

Our residential respite homes at City Beach and Treendale,

are experiencing increased demand and more Members

are including respite funding in their NDIS package which

provides funding for 24-hour care. If you need any assistance

with developing your NDIS plan or would like to know more

about respite options, don’t hesitate to contact us through

Get-in-touch@mswa.org.au or the NDIS team by email


We also have a fantastic 3-bedroom Family Unit at Treendale

where you can book a stay. If you need assistance with care,

that also can be arranged onsite.

One of the best aspects of my role is the Research component.

MSWA proudly allocated $3 million to neurological research

this financial year. In November, MSWA was added to the

UWA Benefactor Wall in recognition of the funding provided

to WA researchers linked with UWA. Our allocation to

MSRA was $1.5 million, with a third of that dedicated to the

International Progressive MS Alliance, and additional MS

funding was allocated to important projects and key staffing

positions at the Perron Institute.

What is also really exciting is the funding we have allocated

to projects supporting research into other major neurological

conditions including MND and Stroke.

Many of our MSWA event participants have allocated the funds

they raised to support people living with other neurological

conditions, here in WA. This has amounted to over $310,000

since 2016! MSWA has purchased vital equipment on behalf

of the major hospitals, outpatient services and rehab centres

which benefits a greater number of patients over time. We

have also expanded the MND loan equipment pool and

replaced old equipment initially purchased using DSC funding

for the NCCC Program. Liaising with the hospital staff to buy

much-needed equipment for their patients is another really

rewarding part of my role!

2019 is shaping up as another busy but rewarding year and

the continued NDIS roll out will see more of our Members

benefit from accessing the funding they need to support them

to live a better life.

The difference MSWA makes is really quite amazing and it’s

what spurs our staff on to dig deeper and do more.

If you need any advice or information about MS or MSWA

services, don’t hesitate to telephone 9365 4888 or use

the Get-in-touch@mswa.org.au link.


Welcome to the Autumn edition of our Member Bulletin.

A message from the General Manager –

Member & Client Services


First, please let me introduce myself as the new General

Manager of Member & Client Services. I joined MSWA last

November just before Christmas, so I was lucky enough to get

to several wonderful events and meet some of our Members.

I have previously worked across several customer service

sectors and have a passion for improving the customer

experience, so I am looking forward to what we can achieve

for our Members as we move forward in 2019. I am very

excited to join such a wonderful organisation which plays an

important role in our community.

Sue Shapland is now General Manager of Strategic Supports

and Residential Options. The split in the roles is due to the

successful growth the organisation has gone through over the

past few years and will enable us to pursue new opportunities

as we continue to grow into the future.

Our team continues to be busy with the roll out of the National

Disability Insurance Scheme (NDIS). There are still some

significant delays with the processing of plans through the

NDIA, but we are continuing to work with them to find ways

to process plans as quickly as possible.

The next NDIS roll out areas will commence on 1 July,

2019. This roll out includes Great Southern (Albany), Central

North Metro (Western Suburbs) and the South East Metro

(Victoria Park and Surrounds). A full list of suburbs can

be found at https://www.ndis.gov.au/understanding/ndisrollout/western-australia;

or contact our MSWA NDIS team.

If you are new to the NDIS, transferring from a WANDIS

plan, or renewing your current plan, please do not hesitate

to contact our team who are here to help you through the

process and get the best out of your plans. Our team can be

contacted at ndisenquiries@mswa.org.au

Some very exciting news for the start of 2019. Our brand

new Butler Centre was completed in January 2019 and we

are very excited to be offering services out of this wonderful

building in our Northern Suburbs. The Service Centre is truly

amazing and fitted out to the highest standard. If you would

like to find out more or book a service, please call 9365 4888

or email enquiries@mswa.org.au

I am sure 2019 is going to be another busy and successful

year for MSWA. Our main objective is to provide you with

excellent services and ensure you have the information,

support and advice you require. Your feedback is

important to enable us to continuously improve our

services, so if you would like to provide any feedback

please contact us on 9365 4888.




As part of our contractual compliance with both the Department

of Communities Disability Services and the National Disability

Insurance Scheme (NDIS), MSWA was reviewed by external

Quality Assessors in November and December 2018.

The audit team reviewed the various DoC-DS programs

including our supported accommodation facilities, Outreach

Groups and in-home supports. They looked at a sample

size of various documents, talked to over 60 Members

and Clients, met with seven carers and chatted with staff

across the various locations. In this instance they visited all

four accommodation sites, five Outreach Groups, including

Bunbury, and met or chatted with both individuals and groups

to get feedback and comments.

We were assessed against the six National Disability

Standards. It was very pleasing to learn that we again comply

with all the standards and there were no ‘required actions’

which are areas of concern requiring prompt action to rectify


We received many positive comments via feedback provided

through the final report:

“The organisation’s services and environments were

described by the large majority of clients and families as being

so important, valuable and enjoyable that they had become a

major part of their lives, and using its services was something

they greatly looked forward to.”

We also received five opportunities for service improvements,

which are suggestions made by the audit team, based on

some feedback. We have taken on board these comments

and will make improvements with a focus on improving

communication with clients and families.

Under the NDIS, a new Quality and Safeguarding Framework

will be implemented in 2020; this will require more

comprehensive external reviews and some changes within

our current systems and processes. We are already working

on some of the changes that will be required.

We would like to thank all the Members, their carers’,

and our staff, who participated in the audit. As

always, your feedback is important to us and helps us

make improvements.

Want to access research articles?

Here are the places you can access up to date research

articles relating to multiple sclerosis:

• Vitality – Our monthly research focussed e-newsletter

• Our website – https://mswa.org.au/news/latest-news

• Right here as part of your Member magazine Bulletin.

It includes great research articles and information every quarter.

Just email communications@mswa.org.au if you would like any further information.




Read more at:



Here we provide summaries of research sourced from

websites in Australia and around the world, we hope it’s of

interest to you.

From the Barts website in the UK

Prevalence of asthma in MS: A United States populationbased

study. Hill E, Abboud H, Briggs FBS. Mult Scler Relat

Disord. 2018 Dec 12;28:69-74

MS and asthma are complex multifactorial diseases; adversely

impacting daily function. As the prevalence of asthma in

people with MS isn’t clear, this study sought to characterise

the prevalence of asthma in people with MS.

METHODS: A U.S. population-study was conducted using

electronic health record information for 56.6 million Americans.

The researchers evaluated the prevalence of asthma in people

with MS (141,880) and non-MS (56,416,790); looking at age,

gender, and race.

Results: The prevalence of asthma was significantly greater

among people with MS; three times more common, with the

greatest amongst the young and the elderly.

Conclusion: Asthma is significantly more common in people

with MS than in the general population - particularly in the

young and elderly irrespective of gender and race. The results

add to the growing MS comorbidity literature and emphasise

the need for management as a part of comprehensive MS

patient care.

From MS News Today Daily Digest

Comorbid anxiety, depression, and cognition in MS and other

immune-mediated disorders. Christiane E. Whitehouse, John

D. Fisket al.

This study sought to determine if anxiety and depression

are associated with cognition in MS, and whether these

associations are similar in other immune-mediated

inflammatory diseases; including inflammatory bowel disease

(IBD) and rheumatoid arthritis (RA) and in anxious/depressed

individuals without these conditions.

The study included 255 people with MS, 247 with IBD, 154

with RA and 308 with anxiety and depressions. Several

cognition tests and scales were conducted.

Results: All groups exhibited higher rates of impairment in

processing speed, verbal learning, and delayed recall memory

compared to general population norms.

Higher levels of anxiety symptoms were associated with

slower processing speed, lower verbal learning, and lower

working memory performance. Higher levels of depression

symptoms were associated with slower processing speed.

These associations did not differ across cohorts.

Conclusion: Managing symptoms of anxiety and depression

in MS, as well as other immune-mediated conditions is

important to mitigate their effect on cognition.

Neurofilament Light Chain Levels in Blood as a Biomarker

of MS Activity and Treatment Response. Jens Kuhle,

Harald Kropshofer et al; Neurology March 05,2019;92(10)

This study assessed the value of blood neurofilament light

chain (NfL) as a biomarker of recent, ongoing, and future

disease activity, tissue damage, and its utility to monitor

treatment response in relapsing-remitting multiple sclerosis


NfL was measured in blood samples from 589 RRMS patients

and 35 healthy controls and compared with clinical and MRI

related outcomes.

Results: At baseline, NfL levels were higher in MS patients

than in healthy controls and correlated with MRI lesion load.

NfL levels were associated with an increased number of new

or enlarging lesions, relapses, brain volume loss and risk of

confirmed disability worsening.

Conclusion: Blood NfL levels are associated with clinical and

MRI-related measures of disease activity and neuroaxonal

damage which have prognostic value. Our results support the

use of blood NfL as an easily accessible biomarker of disease

evolution and treatment response.

From the UK MS Trust

Bexarotene drug trial for myelin repair.

This drug, currently used to treat certain types of skin cancer,

and taken as tablets once daily, is being tested for its potential

to repair myelin.

The MS damage to myelin interrupts or blocks nerve messages.

In the earlier stages of MS, oligodendrocytes (a type of nerve

cell in the brain) can often repair areas of damage, i.e. by

remyelination. As MS is more established, these cells stop

functioning or are killed off and myelin damage isn’t repaired,

resulting in increasing disability.

Bexarotene binds to special locations (receptors), called

retinoid X receptors, on the oligodendrocytes. Lab studies

have found that drugs which act on these receptors can

encourage oligodendrocytes to remyelinate, offering the

potential to reverse damage caused by MS and improve


A Phase II trial is recruiting 50 people with relapsing remitting

MS, currently receiving therapy. Half will take bexarotene

and half will take a placebo. The main aim of the study is

to monitor the safety of bexarotene and to assess whether

bexarotene can promote remyelination by comparing MRI

scans, measuring EDSS and visual evoked potentials.

A randomised double-blind placebo-controlled feasibility

trial of flavonoid-rich cocoa for fatigue in people

with relapsing and remitting MS. Coe S, Cossington J,

Collett J, et al.

Results from researchers at Oxford Brookes University

suggest a daily mug of cocoa, made from dark chocolate,

could improve MS fatigue.

Cocoa made from dark chocolate contains high levels of a

group of chemicals called flavonoids which could potentially

reduce fatigue through several biological processes. Having

shown a single drink improved fatigue, researchers wanted to

find out what would happen when you have a mug of cocoa

every day for six weeks.

40 people with relapsing remitting MS diagnosed within the

last 10 years and with moderate to severe fatigue took part

in this study. Everyone drank a mug of cocoa first thing in the

morning for six weeks; half drank cocoa with high flavonoid

content; the other half drank cocoa with low flavonoid content.

Participants rated fatigue level three times a day and visited

the study centre for further testing at the beginning, middle

and end of the six-week period.

Results: After six weeks there was a small improvement in

fatigue levels in 11 of those drinking high flavonoid cocoa and

in eight of those taking the low flavonoid cocoa. Those taking

the high flavonoid cocoa were able to walk slightly further in a

six-minute walking test. There was also some improvement in

the pain and discomfort component of health-related quality

of life questionnaire.

Condition: The results suggest that high flavonoid cocoa could

lead to a modest improvement in fatigue levels, but a bigger

study would be needed to confirm the results.

Fatigue is a common symptom in MS and can have a major

impact on daily life. Many factors can contribute to fatigue so

finding ways to cope requires a very individual approach. If a

daily mug of cocoa continues to show potential in future larger

studies, it would be a simple, safe and low-cost addition to

the fatigue management toolkit.

From MS Research Australia

Treating MS In Pregnancy.

MS predominately affects young women when they are

starting or growing their families, making treatment decisions

even harder.

Two new publications seek to provide evidence and guidelines

regarding the use of disease modifying therapies during


1. A large international study, led by Australian researcher Dr

Vilija Jokubaitis from Monash University, is using data from

MSBase, which stores information about treatments and

outcomes from thousands of people with MS world-wide.

The analysis included over 9000 women with MS, aged 15 to

45, of which 1,178 women recorded 1,521 pregnancies. 42%

of these pregnancies occurred whilst taking a MS disease

modifying therapy. On average, women were on treatment

for 30 days of their pregnancy. These pregnancies were

compared to those which occurred within a year of stopping

treatment (20%) and pregnancies where the woman had

received no treatment for over a year (39%).

Results: Comparing pregnancy outcomes in women on

treatment to those off treatment, there was no difference

in the rates of full-term pregnancies, pre-term or premature

deliveries or miscarriages. Women were more likely to have

had an induced abortion if they were on MS treatments

carrying the higher pregnancy classifications i.e. evidence of

some harm to the foetus in pregnant women or evidence of

harm from animal studies.

2. The Association of British Neurologists released consensus

guidelines for the treatment of MS in pregnancy.

These were based on data from pregnancy registers

for some MS medications currently available and other

published information.

The guidelines have very detailed recommendations for

clinicians about the use of each of the currently available

medications during pregnancy and identified these key points

for women with MS who wish to have children:


Results: MS treatment should not be delayed until a woman

has completed her family and doctors should keep in mind

the possibility of pregnancy when prescribing treatment to all

women with MS of childbearing age.

Relapse rates naturally fall during pregnancy, and so many

women with MS choose to stop MS medications once they are

pregnant, however, first line injectable treatments (interferon

betas and glatiramer acetate) can be continued throughout

pregnancy. It is recommended that other types of treatments

are stopped where possible.

For women with very active MS, treatment throughout

pregnancy should be considered.

Corticosteroids, a standard treatment for relapse, can be

given during pregnancy and while breastfeeding to women

who experience relapses.

Conclusion: Women with MS are no more likely to have high

risk pregnancies than other women, and unless there are

other reasons, MS should not limit the birthing options or

management of delivery.


Progressive MS International Collaborative Networks.

Multi-year grants investing significant amounts of funds, are

now supporting networks of researchers working together to

accelerate understanding and treatments for progressive MS.

This information has been sourced from Health Direct,

a Government initiative, visit https://www.healthdirect.


While it can happen any time, it's more common to catch the

flu, or experience flu-like symptoms, in the colder months of

the year (April to October).

Six ways to fight the flu:

• Get an annual flu vaccination to be protected. It reduces

the chances of both catching and transmitting the flu. This

is especially important for those at risk of complications

arising from influenza and those in close contact with atrisk

people. See your GP or local pharmacy for advice.

• Wash your hands; good hygiene is one of the best ways to

prevent the spread of colds and flu.

• Cover your coughs and sneezes; this prevents the spread

of infected droplets to others and surfaces.

• Bin your tissues; throw disposable tissues in the bin

after use.

These networks are focusing on:

• Drug discovery programs that identify and validate

molecular and cellular targets, and screen and characterise

potential drug candidates which may be either repurposed

or first-in-human drugs

• The discovery, advancement and validation of new or

existing biological or imaging biomarkers

• Proof-of-concept trials and trial designs, including, but not

limited to trials in remyelination, neuroprotection, enhanced


The lead researchers for the networks are:

• Douglas Arnold, M.D., McGill University (Canada) in

collaboration with 16 investigators from The Netherlands,

U.K., U.S., and Switzerland

• Gianvito Martino, M.D., Division of Neuroscience, San

Raffaele Hospital Milan (Italy) in collaboration with 13

Investigators from Italy, France, Germany, Europe, Canada

and the U.S

• Francisco Quintana, Ph.D., Brigham and Women’s Hospital

(U.S) in collaboration with 8 Investigators from the U.S.,

Canada, Israel and Sanofi Genzyme.

MSWA has allocated $500,000 in 2017/18 and 2018/19 to

the Progressive MS Alliance



• Avoid sharing; don’t share cups, plates, cutlery or towels

with others if possible.

• Self-care at home; you can treat the symptoms of a mild

cold or flu yourself. Most people will get better within 7-10

days without any treatment. You can relieve symptoms by

getting plenty of rest, drinking plenty of water and nonalcoholic

drinks, keeping warm, eating a healthy diet and

avoiding exposure to cigarette smoke. Your pharmacist can

assist with over the counter treatments if necessary.

• If you live alone let someone know you aren’t feeling well so

they can keep an eye on you.

• See your doctor if you are unwell and experiencing high

temperatures, headache, breathing difficulties or a rash, or

if you are worried at all.

You can call Health Direct 24/7 for free advice or to speak

to a registered nurse, call health direct on 1800 022 222.




A $200,000 grant from MSWA will support research into

proteins linked to the progression of motor neurone disease

(MND) as well as a ground-breaking national study into

the needs of carers and families of people experiencing

end-of-life care and bereavement.

The grant is MSWA’s first funding allocation to research into

MND (also known as amyotrophic lateral sclerosis, or ALS).

MSWA CEO Marcus Stafford AM said the decision to support

MND research reflected the expanded charter of MSWA as an

organisation that helps people living not only with MS, but all

neurological conditions.

“As Australia’s largest contributor of funding for MS research,

we began to diversify our research investment program last

year when we supported an investigation into stroke,” said

Mr Stafford.

“This year we continue to broaden our scope with this grant to

the Motor Neurone Disease Research Institute of Australia.”

Dr Sarah Rea of The University of Western Australia will lead

a study into the interactions between p62 and TDP-43, which

aggregate in the cell body in most patients with MND. It is

hoped the study will help identify a target for future research

into potential therapeutics for this neurological condition.

Professor Samar Aoun of La Trobe University in Victoria

will lead the other MSWA-supported research project,

a national survey to help better understand the needs of

family members who care for people with MND. The

results will provide a foundation for developing more

targeted supports and resources to help families manage

decision-making and grief.

Janet Nash, Executive Officer of the Motor Neurone Disease

Research Institute, said donations received each year

were never enough to support all of the excellent funding

applications that warranted funding.

MSWA’s offer of two grants of $100,000 each will enable two

additional researchers to lead their teams toward discovery

and improved care in 2019,” said Ms Nash.

“Both MND and multiple sclerosis are neurodegenerative

conditions. Outcomes from research in one disease may

well translate to benefit for the other – and maybe more

neurodegenerative conditions as well.”

MSWA’s grant to MNDRIA is part of its record $3 million

investment in research funding for neurological conditions for


“Thanks to the generosity of our supporters, MSWA is in a

position to broaden our investment in research and support

scientific investigations into other neurological conditions,

such as MND and stroke,” said Mr Stafford.

“While MSWA strives on a daily basis to improve the lives

of people living with neurological conditions, we believe that

medical research provides hope to the people we support and

their families.”







The NDIA recently released the second report for year six

of the National Disability Insurance Scheme, and I thought

it would be timely to update you with some of the key data

on how it is all going. A word of warning, this article is full of

stats so if you want to skip to the big reveal; the NDIS still has

some work to do, but overall is trending up.

Wait, what? First of all, yes, the NDIS is in its sixth year! It

seems like only yesterday that the NDIS was introduced. While

the roll out has had some twists and turns, it’s important to

recognise that its still very young and soon the whole country

will be covered by one equitable funding scheme which is no

small feat.

The NDIS is how big? What jumps out from this report is

the number of participants who have already made their way

onto the NDIS. As of 31 December 2018, more than 244,000

Australians are receiving NDIS funding. West Australians made

up 9,607 of this number or approximately 68% of the State’s

estimated intake. Importantly, 3,227 of these participants are

receiving individualised support for the first time. The report

also highlights that the WANDIS to NDIS transfers remain a big

priority for the NDIA with 2,949 transfers finalised compared

to only 967 in the previous quarter. This reflects what MSWA

have experienced and explains some of the wait for new NDIS

customers receiving plans.

While I acknowledge that the planning process has taken

longer than expected, it’s good to see so many people now

have access to funding for the first time, and I am optimistic

about further improvements over the next 6 – 12 months. This

optimism is due to the number of plan activations we have

seen over the past three months and the announcement late

last year that Mission Australia and APM will be acting as

Local Area Coordinators and assisting with plan development

into the community.

So where does the funding go? In WA, multiple sclerosis

customers make up 2.7% of the $0.5 billion total of annual

committed funding, with core support – daily activities

accounting for 48.4% of funded services. People living with

Autism make up the largest group of NDIS participants with

34% of the WA market with Mental Health second.

One important stat from this quarterly report is that only 75%

of committed funds were utilised in 2018 which means that

people are still not making full use of their NDIS funding.

Unused funding is returned to the NDIA, so if you have any

questions about how to make the most of your NDIS plan

please reach out to us today.

Is it making a difference? Included in this report were

findings from a recent study of participants associated

with the NDIS at least two years. The survey asked, “has the

NDIS helped?” across various categories and showed that

80% of respondents in the 25 and over age group reported

that their daily living has been improved. The study also

showed that 68% of respondents felt that their social and

community participation improved under the NDIS which are

both positive outcomes.

So, what needs improvement? If there was one aspect

of the NDIS vision that still needed work, it was ‘supporting

people into employment opportunities’ and with the number of

participants in employment not budging from 21% throughout

the six years of the Scheme. The employment rates of people

living with multiple sclerosis is slightly better at 22% while

the rates for those under the age of 25 is higher still, so

maybe things are beginning to change. Pleasingly the NDIA is

acting on this matter by setting up a Participant Employment

Taskforce to look for answers to the problem.

Overall, my reading of this report is positive for both the

NDIA and participants. The feedback we are getting from

MSWA Members who have commenced their NDIS funding

is generally positive, and we hope that once the Scheme

finalises its rollout in July, service delivery will continue to

improve. I would still expect an environment of change for the

next couple of years, however, MSWA will continue to work

with our Customers to navigate this changing environment

and focus on improving our service delivery to you.

As always if you have any questions about the NDIS

or your plan in general, please don’t hesitate to

contact your NDIS team at ndisenquiries@mswa.org.au

or call 1300 097 989.

Health Education

What kind of Assistive Technology (AT) could help make life

easier for you? Come along to a workshop offered by MSWA

Occupational Therapy staff to find out more.

Workshops for people living with all neurological conditions

are offered at Rockingham, Wilson, Beechboro and Joondalup/

Butler. Topics include:

Assistive Technology (AT) refers to aids that help you to do

something, such as:

- cooking tools such as an electric can opener

- housekeeping tools like a long-handled duster or a wheeled

laundry cart

- bathroom aids such as a grab bar

- grooming tools including long handled shoe horn

- reading tools such as an app that reads from your phone

or lap-top

- writing aids including foam grips for pens

- typing alternatives such as voice recognition apps

- scheduling tools like the calendar function on a smartphone

Cognition: Join a cognition group to learn how to improve

your attention, memory and thinking, and to share your

experiences with others. People living with MS commonly

experience changes in cognition such as taking longer to take

in and process information, or having more trouble recalling

details of a task or a discussion.

Managing fatigue: Fatigue is the most commonly reported

symptom in MS, with most people living with MS experiencing

this at some time. Fatigue can impact all areas of life and can

be experienced as overwhelming weariness, tiredness or lack

of energy. Come along to a fatigue workshop to share ideas

and gain strategies about how to conserve your energy and

work smarter.

Contact Occupational Therapy on 9365 4888 or

OT.referrals@mswa to find out more about upcoming


Peer Support

Peer support can help people living with a neurological

condition and their family and friends to connect with others

who understand from personal experience. By reducing

feelings of isolation and loneliness, peer support can empower

people to improve their health and wellbeing.

Peer support can be provided in a range of ways, including

peer support groups, one to one and online.

MSWA offers a range of peer support groups for:

- people living with MS with groups held in Currambine,

Butler, Beechboro and Rockingham

- regional people living with MS and their support people with

groups held in Northam and Geraldton

- carers of people living with MS with groups held in

Currambine, Manning and Rockingham

Peer support is available for people living with all neurological

conditions through a range of groups and workshops such as

expressive journaling, restorative sound, stress busters, and

mindfulness meditation.

We’re looking to continue to build the peer support we offer

– watch this space!

Contact Sabena on Sabena.Lund@mswa.org.au or

9365 4858 or for more information.







“We don’t stop playing because we grow old; we grow old

because we stop playing.” - George Bernard Shaw.

Often when we think of play we think of children. Play is a

child’s natural form of communication. It does not need to

be taught or directed as it is natural and spontaneous. It’s so

important in fact the UN has listed play as one of the universal

rights of children. Children use play to grow and learn, they

can safely try out new ideas and concepts and through

play, problem solve and work through emotions, develop

relationships and have fun.

During my training in child centred play therapy, we were

required to practice the techniques and theories using

roleplay, not just as the therapist but also in the role of the

child. I was taken aback at how quickly I lost myself in the

toys and playing out stories and emotions and how amazing I

felt afterward. Lighter, freer and enriched. I could not help but

reflect why I had lost contact with that playful part of myself

and how it could be a crucial part in not just child, but also

adult therapy.

At what point on our road to adulthood do we discard

this natural tool of play? Adults may be concerned that to

participate in playful activities or behaviours they may be

judged as childish. Given all the benefits I have previously

mentioned, I find it difficult to see being childish in the form of

play as a negative but rather an attribute. If as adults we can

fuel our imaginations, be more creative and be free to explore

in an unstructured way, surely that benefits not just ourselves

but our community.

For many years now, tech companies have understood the

link between play and the benefits in the work place. Allowing

staff to engage in free play during work, providing yoga or

other activities in the workplace, organising social activities,

all assist in increased staff morale, reduced burnout, lower

staff turnover, encourages teamwork, increases creativity and

problem solving. Play can help us function better when under

stress and rejuvenate both mind and body. These companies

have learned that value is not necessarily the amount of time

you work but the quality of that work and that is directly linked

to a person’s wellbeing.

Play does not always have to be a physical activity it can also

be a state of mind. Engaging with strangers while waiting in

a queue, being able to see the fun and colour in the world,

stopping to admire nature, art and beauty, viewing the world

with curiosity and openness. Being able to tap into these

parts of ourselves can boost our energy as well as improve

our brain function and open new pathways. It can allow us

to try new things, be flexible and learn to trust and feel safe.

It helps us build skills to improve our connections to family,

friends and co-workers.

Ultimately, play can add joy to our lives and the lives of others.

Some ideas to bring play into your life; find a hobby, join a club,

organise a games night, throw a frisbee, shoot some hoops,

put on a puppet show, create with play dough, dance in the

dark. Invite colleagues, family and friends to play along with

you. Laugh until there is no sound. Live with empathy and

nurture the child within. Play.

“A person’s maturity consists in having found again the

seriousness one had as a child, at play.” - Friedrich Nietzsche.

Humans have always imagined, dreamed and visualised while

hoping for good things to come in their future. In prehistoric

times, researchers believe that some cave paintings represent

hopeful visions of impending successful hunts that would

produce an abundance of food for their tribe. So, with a long

history of mankind recording dreams and goals in the form of

pictures, how do we, in 2019, imagine and visualise our own

life dreams in a tangible and focused way?

A vision board is a tool used to help clarify goals, increase

self-awareness and communicate our wishes to other people

in our lives. Some suggestions to include in your vision

board are career, values, health, end of life, family, holidays,

community, home decorating, your best life, meditation and

learning goals.

To begin your vision board, it can be helpful to daydream or

meditate the things you want to be, do or have in all areas

of your life. The more specific you can be, the better. Play

some music, burn incense or light some candles. This can

help you feel comfortable and relaxed and really allow your

visualisations to start flowing. If you are doing any journaling

or lists, try to handwrite them to create more energy between

you and your dreams.

The material you will need for your vision board will vary

depending on how you would like yours to develop. Many

people like to develop their vision boards into their own style.

You can use coloured cardboard, corkboard, pinboard, an

art workbook or even a notebook; there is no limit to this.

Pictures and words for your vision board can be found in

glossy magazines. Op shops often have cheap bundles, or

perhaps you can collect them from family and friends. It can

be quite relaxing to schedule a few hours for yourself, make

a cup of tea and flick through magazines until you find what

you are looking for. If this is not appealing to you, get online

and search on the internet for those amazing dreams and

inspirations you want in your life. Some people like to draw or

paint their pictures first, use photographs or even create their

own graphics online using Canva. Find pictures and words

that conjure the feeling of wellbeing.

As you look at your pictures, you may start to imagine what

your finished board will look like. Some people like to glue or

tape as they go, others prefer to lay out all their pictures and

words and do the sticking down at the very end. There is no

right or wrong way, the choice is yours to explore what feels

right. It can be helpful to find a quiet space where you won’t

be interrupted. Ensure you have all your supplies ready and

continue playing your music, burning candles or incense. This

is your special time and space to do what feels right for you.

If you want a more contemporary vision board, there are free

and low-cost apps available online including Pinterest where

you can design, change things around and keep your vision

board on your computer or iPad.

Now that your board has been created, it is important

to keep it in an area that you see every day.

Perhaps in your bedroom as you wake up or by the front

door as you leave the house. Also spend 10 minutes at

least once a week to sit quietly and really look at your

pictures and words on your board to revisit the feelings

of wellbeing and relaxation that you had when you were

completing it.




Recently MSWA ran a successful social media campaign to

promote Smart Eating Week and provide our Members with

some tips on healthy eating.

What is Smart Eating Week?

Smart Eating Week ran from 11 to 17 February and focused

on raising community awareness of health and nutrition via

education by Accredited Practicing Dietitians (APD). This

year’s focus promoted how an APD can help improve your

health, and advocating for a new National Nutrition Policy in

Australia, which hasn’t been updated in over 26 years!

Having a healthy, well-balanced diet plays an important role

in overall health and in reducing your risk of chronic diseases

such as diabetes and heart disease. The dietitians at MSWA

have prepared some tips for eating smarter this week:

1. Start your day with food

Begin your day with breakfast to improve concentration and

keep energy levels stable throughout the day.

2. Plan ahead

Plan out your meals for the week and shop in advance to

achieve a balanced diet and avoid impulse purchases and

last-minute unhealthy meals.

3. Choose healthy fats

Unsaturated fats from foods like nuts, seeds, avocado and

vegetable oil (like olive oil) are beneficial in small amounts as

part of a healthy diet.

4. Eat mindfully

Increase enjoyment and awareness of your meal/snack. Limit

distractions at meal times, chew food well and pay attention

to how full you feel. Stop eating once you feel satisfied, even

if your plate isn’t empty. You can keep the leftovers for the

next meal.

5. It’s all about balance

Choose whole foods first. Limit processed foods, choose

mostly plant foods and eat a variety of food from the five food

groups for optimal health:

• Vegetables

• Fruit

• Meat and alternatives

• Grain foods

• Dairy and alternatives

6. Opt for Omega 3s

Omega 3s are fatty acids that have been shown to help

reduce inflammation in the body. The best sources of Omega

3s are fish, fish oil, cod liver oil and other seafood, but you

can also find them in plant foods such as flaxseed, walnuts,

chia, pecans and canola/flaxseed/soybean oils.

7. Limit processed foods

A lower intake of highly processed foods and higher intake of

whole foods and plant foods has been associated with lower

levels of inflammation in the body.

8. Eat a rainbow of fruits and vegetables

Choose a range of different coloured fruits and vegetables

to fill up on healthy fibre, get a range of vitamins and

minerals, boost gut health, manage weight and reduce

chronic disease risk.

9. Be alcohol aware

Limiting the amount of alcohol that you drink can help with

weight management, reducing your risk of chronic diseases

and keeping levels of cholesterol and triglycerides in your

blood in check. Aim for no more than two standard drinks

per day and try to have at least two alcohol-free days during

the week.

10. Catch up for a cook-up

Cooking at home means that you are in control of what is

going into your food. Try some new recipes and swap tips with

friends to improve your skills and confidence in the kitchen.

If you’re interested in speaking with the MSWA Dietitians

call 9365 4888.

RECIPE: Tasty Stuffed Sweet Potatoes

Prep: 10 min Cook: 25 min Serves: 4


• 2 large sweet potatoes

• 1 spray of olive oil

• ½ onion, chopped

• 2 cloves garlic, minced

• ½ cup quinoa (could be substituted for couscous or rice)

• ½ tsp reduced-salt vegetable stock

• 1 cup fresh OR frozen spinach

• ¼ cup almonds

• 1 tbs sultanas

• ¼ cup reduced-fat feta cheese/cheddar/parmesan

• 1 can (400g) chickpeas (rinsed and drained well)

• Pepper to taste



1. Preheat oven to 200 degrees (180 fan forced) and line an

oven tray with baking paper.

2. Wash the sweet potatoes, slice in half lengthways and

prick all over with a fork. Microwave for 6 minutes on high,

flip over half way. Put sweet potato in the oven and bake

for 20 minutes, flipping it over half way through.

3. While the sweet potato is cooking, heat the oil in a frypan

over a medium heat. Add onion and cook for about 5

minutes, till soft. Add garlic and chickpeas and cook for

another 2 minutes. Add the spinach and cook till soft.

4. Cook the quinoa according to packet instructions, adding

the vegetable stock powder to the water.

5. Add the cooked quinoa, almonds, cheese and sultanas to

the onion mixture, stir and season with pepper.

6. Use a fork to scratch and mash the top of the sweet potato,

then top each one with half the filling.

(Recipe adapted from Live Lighter)




As part of my duties as the WA Advocate for MSA I travelled

to Canberra for our annual meeting with MSA management,

politicians, and my fellow advocacy colleagues from

around Australia.

The aim of our meeting was to seek election commitments

from all sides of Parliament about our road map for people

living with MS and other neurological conditions. There are

three roadmaps created by MSA as part of their strategic

planning; they seek to defeat MS, to support people with MS

living with disability; and to support people ageing with MS.

We held a ‘Parliamentary Friends of MS’ meeting in Parliament

House with many MPs and Senators invited to attend.

Our huge coup was to have the Prime Minister Mr Scott

Morrison, not only be there but to officially open our meeting!

To have such support is a testament to all the hard work MSA

Advocates do behind the scenes. I am proud to say I am part

of such a dedicated bunch of people.

You can access a copy of that road map and the nine points

we hope to have all parliamentarians embrace, whoever wins

at the election, at msaustralia.org.au

The photo is with Prime Minister Scott Morrison and some of

the other MSA Advocates from states around Australia.


2019 CAMPS





Venues are booked and the dates are fixed! I am so excited

and looking forward to seeing our regular Members and

hoping to get a few newcomers at our retreats this year.

Here are the dates and venues for our carers’ retreats and

Member getaways:

1. Carers’ retreat at Rottnest Island Monday,

29 April to Thursday, 2 May 2019

This year our first carers’ retreat is at my favourite place.

Superior ocean view bungalows, dining out at the best

restaurants, fun indoor and outdoor activities – a few things

to look forward to. Feel free to contact me if you are a family

carer and want to enjoy this fantastic retreat. I encourage our

Members to convince their loved ones to attend these retreats

as a little treat on your behalf, I assure you they will be well

looked after.

2. Members’ getaway Guilderton Monday,

27 May to Thursday, 30 May 2019

The first Members’ getaway for the year is organised at Tuppin

house in Guilderton. Guilderton is a nature-based tourist

town, which lies approximately 100km north of Perth. With

the stunning views of Moore river from the accommodation,

it makes a perfect venue for our Members with only one hour

15 minutes’ drive from Perth. If you have not attended Moore

River camp before, give it a go this year. You will be amazed

to see how much fun we have on these getaways.

3. Carers’ retreat at Kilmolee at Safety Bay

Group 1 – Monday, 19 August to

Thursday, 22 August 2019

Group 2 – Monday, 26 August to

Thursday, 29 August 2019

This retreat is for our family carers who simply want to relax

in a very peaceful setup. Kilmolee offers spectacular ocean

views, splendid sunrises, glorious sunsets, beach walks and

amazing wildlife that will ensure your stay is a unique and

memorable one. In total, nine ensuite are rooms are booked

for each group and all meals are catered by a professional

cook. Activities are organised after consultation with the

participants so that we can structure the retreat according to

the interests and comfort of our family carers.

4. Members’ getaway at Woodman Point

Monday, 2 September to Thursday, 5 September 2019

This year we are back to Woodman Point for our second

Members’ getaway. I am hoping that you can join us this year

if you missed out on Rottnest camp last year due to limited

accessibility. If you are interested in art and craft, archery,

beach activities, quiz nights, and lots of fun activities and

competitions, this is the getaway you don’t want to miss. As

it is so close to Perth you are welcome to join us for the day

activities if you like the comfort of your bed to sleep at night.

5. Family camp at Woodman Point Monday,

7 October to Thursday, 10 October 2019

For Members with primary school aged children, this is the

camp where you can enjoy some quality time with your family.

The Department of Sports and Recreation organise activities

such as archery, flying fox, rock climbing, high ropes, beach

activities for children. Parents are welcome to attend and we

also run structured indoor activities.

All families get their own room with bunk beds and most of

the rooms have enough lower bunks for adults and younger

children. Feel free to contact me for further information.

6. Southwest Members’ Getaway Denmark

Monday, 28 October to Thursday, 31 October 2019

For our Members in the southwest we have a special getaway

for you. The Cove in Denmark offers open plan building with

a 25-seater table and a large open fire. Accessible bathrooms

and toilets and flexibility in sleeping arrangements in the

charm of the A-Frame. Meals catered by award winning

Mrs Jones café, outings, dining out, indoor activities are few

of the amazing things to look forward to if you are thinking

about attending.

We would like to acknowledge the support of Lotterywest;

their funding allows MSWA to provide these camps to

our Members and their carers at minimal cost.

For further information and to register your interest

please contact: Sumit Sandhu on 9365 4843 or email


I’m writing this from a carer’s perspective. Although I don’t have

MS myself I’ve learned to live with it all the same. I manage

that better some days than others, but for the most part I do

okay. I have other interests, and even though I’m 63 years old I

stay active. Our story is not unique, but then again, MS affects

everyone in a unique way, so I guess I might be wrong about

that. Still, ever since my wife Kathy found herself on the wrong

end of its affection we’ve had a ‘third party’ living with us; an

unwanted guest that comes and goes whenever it pleases.

It all began with a general feeling Kathy had that something

wasn’t quite right. For several years’ doctors said the ‘trapped

nerve’ in her fingers, the two separate episodes of Bell’s

Palsy, and my personal favourite, ‘burning the candle at both

ends’, didn’t seem impossible. Except the ‘burning candle’

explanation ... we didn’t own any candles! Needless to say,

the initial indifference we encountered did little to help Kathy,

herself a nurse, deal with the early signs of MS. She did have

a couple of CT scans, but they proved inconclusive.

Time passed and Kathy learned to live with the increasing

number of symptoms she was experiencing, but as they had

no collective name at this point MS wasn’t a concern for us.

Not until the day I found her slumped over, head down, her

left arm lying awkwardly on her lap, a profound weakness

down her left side, slurred speech, and an inability to select

the appropriate word. Kathy was presenting for all the world

like she’d had a stroke. That’s when we took ourselves off to

the local hospital.

The neurologist in Emergency wasn’t convinced it was a stroke

but arranged for an MRI just to be certain. The result of that

scan came as a shock; 32 separate lesions in Kathy’s brain.

Shortly afterwards a consultant introduced us to our unwanted

guest by name ... multiple sclerosis. The diagnosis, although

upsetting, fearful even, brought us both some level of relief; now

at least we had a name for what was happening, we knew who

our unwanted guest was and could tackle our intruder head on.

Kathy’s been living with MS for over 20 years now, and it’s

been a difficult path to walk at times. I often ask myself if I

could maintain her happy disposition if I’d had a continuous (7

out of 10) headache for the past two decades. If I had to come

to terms with stopping the work I loved because of short-term

memory loss, fatigue, and increased cognitive dysfunction. I

wonder how I’d cope with looking okay on the outside while

crumbling away on the inside, and having to listen to people

tell me over and over again how well I looked. I doubt I’d

handle the constant numbness in my fingers and feet very

well either, or the double incontinence, the years of injections

and infusions, the shingles, or feeling like my energy was

draining away every afternoon, whether I was having a good

day or not.

Kathy’s okay with me writing about this, if she wasn’t I

wouldn’t do it. But her courage of late has been truly amazing.

At the beginning of October 2018, Kathy had a call back

following her annual mammogram and this led to a number of

biopsies. The following day she received the news no woman

wants to hear ... “we’ve found cancer”. Kathy had the all clear

just twelve months earlier so this came completely out of the

blue; three tumours in her left breast, each one aggressive

and invasive, the only option surgery. That news pushed our

worries of living with MS completely off the table.

The following week we met with the surgeon. The mastectomy

took place three days later. Unfortunately, cancer cells were

also found in one of the lymph nodes removed during the

surgery, and that meant most of the nodes had to go too. Kathy

has made a remarkable recovery from her surgery. She’s still

coming to terms with the changes to her body, but she’s

focused on her new challenge; six months of chemotherapy

with radiation treatment to follow. She’s going to lose her

beautiful long hair, but she’s discovered she can donate it to a

charity making wigs for burns victims and people with cancer;

a thin silver lining to an otherwise miserably dark cloud.

Kathy is strong in a quiet way, she’s accepting in an intelligent

way, and she is determined to get past this latest intrusion

into her otherwise happy life. By mid-August, we should be

able to say, “Kathy had cancer” and not, “Kathy has cancer”,

that’s the plan. Life often knocks you down, but it’s what

happens next that matters ... stay down or get back up? Kathy

has always chosen to stand.

I don’t have MS, but I care for a woman who does. Actually no,

I don’t just care for her, I love her, completely, unreservedly.

Her daily display of courage is something I can only aspire to.

MSWA have been incredibly supportive, not just with Kathy, but

with me too. I’ve taken the opportunity to talk with a counsellor

on a number of occasions and understand that MSWA is there

for me too. With ongoing support life looks good for Kathy and

me regardless of what may come in the future.

In truth, I’d have to say it’s not always easy being a carer,

but it is always an honour. I’m not sure where Kathy’s

courage comes from, but it’s been a rare privilege to

bear witness to it every day.








Speech Pathologists are known for working with individuals

who have communication difficulties, but did you know we

also assess and manage swallowing difficulties?

A swallowing difficulty is any problem with drinking, chewing,

eating, taking medication, or protecting the lungs from food and

drink ‘going down the wrong way’. These difficulties can occur

at any stage of life and may be short or long term. Depending

on the underlying cause or the progression of disease, some

swallowing difficulties can persist and worsen over time.

With assessment and treatment from a speech pathologist, a

swallowing difficulty may be managed, reduced or resolved.

There are many types of therapies and strategies to manage

swallowing difficulties including modifying diet. These

modifications help to make chewing and swallowing both

easier and safer for our Members.

The current Australian National Standards for Texture-

Modified Foods and Thickened Fluids was released over ten

years ago in 2007. With the research frequently evolving

around the assessment and management of swallowing

difficulties, it was decided in December 2016 that here in

Australia, we would be changing our current practices to align

us with countries all over the world.

The International Dysphagia Diet Standardisation Initiative

(IDDSI) is a global standard for terminology and definitions

to describe texture-modified foods and thickened fluids for

individuals of all ages with swallowing difficulties.

“IDDSI is person-focused rather than profession-centred

approach with global terminology suitable for all cultures

and care settings,” said Dr Cichero, an Australian Speech

Pathologist and a co-chair for IDDSI.

The IDDSI framework was developed by a group of health

professionals who volunteered from all over the world

including specialists in speech pathology, nutrition, dietetics,

medicine, occupational therapy, nursing and engineering.

So far, the MSWA Speech Pathology team have begun

preparing for the adoption of IDDSI through attending

workshops, providing IDDSI training to MSWA staff and have

formed their own IDDSI committee. This committee will be

involved in managing the distribution of information as it is

made available. IDDSI is set to roll out Australia-wide in May

of 2019. This means you may begin to see some new posters

around Centres and hear care support workers using different

terminology in relation to texture-modified diets and fluids.

If you wish to find out more about IDDSI, please visit

https://iddsi.org/ or download the free IDDSI Framework

app on your smartphone. Alternatively, if you have any

queries, please don’t hesitate to contact the Speech

Pathologist team at MSWA for more information, through

reception on 9365 4888.

Speech Pathology Australia annually aims to educate and

advocate for those who have a swallowing difficulty, by the

promotion of ‘Swallowing Awareness Day’. This year, it was

held on Wednesday, 13 March. The MSWA Speech Pathology

team invited all Centre staff for an afternoon tea to inform

and provide continued education about the implications of a

swallowing difficulty for our Members.

Do you often experience:

• Coughing while eating or drinking?

• Trouble swallowing tablets?

• Worry about attending social gatherings where food

is offered?

• Difficulty in feeding yourself?

• Difficulty swallowing your own saliva?

If any of these apply to you, you may require a swallowing

assessment. Please contact Speech Pathology at MSWA

on 9365 4888.

I want to be good, but sometimes I’m not.

I want to eat healthily, and usually I do, but sometimes I buy a

chocolate bar and eat the whole thing by myself in one sitting.

I want to exercise regularly and stay strong, but sometimes

I spend all day in front of my computer, only moving to feed

myself or go to the bathroom.

I want to be a famous novelist like Tim Winton, but sometimes

I play games on my computer obsessively all day and don’t

write a word.

In the end, these things don’t affect anyone except me.

They don’t really matter. But what does matter is what

affects others.

I want to live ethically and not waste the world’s resources,

but sometimes I waste things and throw plastic away and it

breaks my heart.

I know I can do better.

Like many people, I have been shocked and upset by the

terrible images we see in the news of plastic pollution in

our oceans. I hate to see the pictures of birds, turtles and

other marine life dead or dying because of plastic debris

which may well have come from my own kitchen. I care

about our environment and I love all creatures. (Note: I don’t

actually love cockroaches, but I accept their right to be here.)

It is horrible to see the dreadful impact humans have had on

the earth.

When I was a young child, plastic was not as big a part of my

life as it is now. Most of the containers in our kitchen were

made of china, glass or metal. My mother eventually bought

a few pieces of Tupperware which she looked after carefully.

Four years ago when she moved into an aged care facility

and her house was sold, my sister found some of those pink

and pale green plastic containers still in her cupboard, and

still in usable condition.

I remember when cling wrap first appeared in our house. My

mother used it sparingly and carefully. For a while she even

washed each piece after use and laid it to dry so it could be

reused. That seems funny now, but this was the era when

groceries came home in brown paper bags, and sandwiches

were wrapped in wax paper. Food scraps were fed to the

chooks, or dug into the garden. Any leftover rubbish was

wrapped in newspaper to be put in the (metal) rubbish bin.

My parents were slow to change the habits they had learnt

from childhoods spent in poorer and more frugal times.

I, however, embraced the wonders of plastic with no thought

to what happened to it after I discarded it. When I threw

things out, I forgot about them. I bought plastic bags to line

my bins, and different ones to freeze food in and different

ones again as sandwich bags. When I emptied my cereal

packet I threw the plastic bag in the bin. I wrapped things in

cling wrap and then threw it away. It is only in the last couple

of years that I have come face to face with the truth about

plastic and taken a look at myself. Seeing terrible pictures of

oceans with floating plastic, turtles and sea birds strangled by

my throwaways brought me up short. It wasn’t enough to be

remotely horrified. I needed to take my short-term glasses off

and face the truth. I am doing this. I am polluting this ocean. I

am killing these animals.

If the major supermarkets and even the state government get

it by banning single use plastic bags, then I should too.

I’ve made changes. I don’t buy plastic anymore. Any that

comes into my house is stored to be reused, sometimes as a

rubbish bag, and that worries me. Increasingly I am wrapping

scraps in newspaper instead. When I shop, I put my fruit and

vegetables in cloth shopping bags. I would love to have chooks

or a compost heap, but I’m not sure how I would manage

either on my own. I wish one of my neighbours had them so

I could give my green waste to them. In the meantime I still

have a small amount of rubbish to put in my bin every week.

Our society is still in the process of working out how to live

without plastic. I want to live according to my beliefs and

ethics, but there are times when I struggle. Living with MS

and using a wheelchair, I find it difficult sometimes. Plastic

can be just so darn convenient and sometimes helps make

my life easier in little ways. I have to weigh up my desire

to decrease my toxic impact on the environment against my

physical ability, and it saddens me when I have to compromise.

Slowly, however, I will keep making what changes I can.

And maybe one day I’ll meet someone who will share my

desire to keep chooks.








The John Studdy Award is Multiple Sclerosis Australia’s

most prestigious Award, given annually in recognition of

outstanding and selfless provision of meritorious service to

people living with MS, at either National or State/Territory

level, preferably over a period in excess of 10 years.

The standard of this service is to be of such high status that

‘the nominee has made, or is making, a tangible difference’

for the benefit of people living with MS and/or their families

or carers.

We are delighted to announce that Board Member,

Bulletin contributor, and MSWA Member Ros Harman

was one of the 2018 recipients.

Ros Harman was first diagnosed with MS at the age of 26.

Her early career included being a school teacher, and a

Human Resources and Training Manager for a medium-sized

Our latest accommodation facility at Butler has arrived!

What was a block of sandy land in the early days, is now

a wonderful MSWA Services Centre and Supported

Accommodation facility.

The 10-unit accommodation facility, with self-contained units,

their own courtyards and three communal areas including

a theatre room, lounge, dining rooms and courtyards is

amazing. The décor is beautiful, and it really feels like a home

for the new residents.

Our accommodation provides a home for residents living

with MS and other neurological conditions. We have 24/7

onsite care and provide supports and security whilst

promoting independence and choice. Thanks to our cooks the

food is amazing!

I am new to MSWA and it has given me great pleasure hiring

a team of over 25 professional care support workers. This

amazing new accommodation with a modern ‘Hamptons’ look

presents supported living in a stylish yet practical way, and

it’s truly refreshing.

company. Many years ago, Ros initiated and pioneered a

parents’ support group, and is widely felt to be an inspirational

role model for people with MS and for women in particular.

She has served on the MSWA Board since 2004, and is an

ambassador for MSWA, representing the organisation on

all forms of electronic media and is an active ambassador

within political circles. Ros is Vice President of the Board,

Chair of Member (Client) Services Committee and Chair of

the Research Committee. Her stewardship has led MSWA’s

position as the leading funder of MS research. Her past

roles within MSWA have also included Editor of the Bulletin

magazine and director roles that included fundraising.

Ros is a regular public speaker at events and functions,

promoting the involvement and participation of people

with disabilities.




Leading the Butler team and welcoming and supporting our

residents and their families from their first day arriving at

Butler Accommodation, has been a pleasure. The many smiles,

laughter and community spirit that has been built from the

ground up is amazing. I look forward to sharing further news

with you in the future and bringing you along on our journey.

I would like to thank everyone at MSWA; all the staff,

the various teams and departments and the wonderful

residents that have made this all possible.

In 2005, Kate Gild was diagnosed with multiple sclerosis (MS)

when she was 33 years of age. She was living in London at

the time and home in Perth on holiday visiting family, when

she started experiencing nerve pain in her wrist. Kate thought

it was carpal tunnel syndrome, but an MRI revealed it was MS.

“At the time I didn’t know much about MS, and after receiving

my diagnosis, I realised I had been living with some symptoms

for a while. I would fall over for no reason or find I could not

walk properly which I had put down to being clumsy. I also

had tingling in my right hand that I thought was carpal tunnel

syndrome, which my mum and grandma both had. I was very

scared,” Kate said.

Now in an electric wheelchair, life has been a roller coaster

for Kate and her family, but she considers herself fortunate

to have called MSWA Treendale Gardens home for the last

three years. The facility just outside of Bunbury in the State’s

beautiful South West, provides high-support, state of the

art accommodation and respite for people with neurological

conditions. There, Kate accessed 24-hour care and nursing,

and allied health including physiotherapy and Outreach at the

Community and Health Services Centre in Bunbury.

However, the 46-year-old wanted to be closer to her family

and was very excited when she discovered that MSWA was

building an $8 million high-support accommodation and

services facility in WA’s northern suburbs of Butler.

Butler Centre will be a one-stop-shop for people living with

MS and all neurological conditions, offering a range of

services such as physiotherapy, counselling, nursing, and

peer group sessions, and will be a base for staff co-ordinating

home support.

The adjoining development provides high-support

accommodation facility equipped with 10 fully self-contained

units for people living with neurological conditions. As soon

as Kate found out about the development, she put her name

down to apply for one of the units.

“I'm so excited to be living in the Butler community. I had

been living in Treendale for almost three years and my life

was fine but it's just so far away from my friends and family.

I’ve missed them so much,” said Kate.

The facility will provide permanent accommodation options

for people who can no longer stay in their own homes. They

offer an age appropriate option for younger people who would

otherwise find themselves entering aged care facilities, due

to their high care needs.

Kate is looking forward to the simple things like having friends

over for a coffee or going to her parents’ house which has

proved difficult whilst living regionally.

“The onsite care and support will allow me to lead a fulfilling

and independent life. The train station is down the road and

there is a services hub next door. I can take myself to my

physiotherapy sessions or go grocery shopping. I can’t begin

to tell you what that means to me,” added Kate.

MSWA is thrilled to be opening a purpose-built centre for

people like Kate who are living with neurological conditions.

Residents will have their own self-contained unit and shared

communal area where they can socialise via a high-support

accommodation facility which includes onsite 24-hour, 7-day

a week care for younger people who may have otherwise had

to face the very real prospect of living in an aged care facility,”

MSWA CEO, Marcus Stafford AM said.

“These developments are made possible by the ongoing

support of MSWA by generous Western Australians who buy

tickets in our Mega Home Lotteries, take part in events like

MSWA Ocean Ride and make bequests and donations. We

thank all of our supporters very much.”

Mr Stafford added that the Butler Centre was part of the

organisation’s long-term, strategic growth plan which will

continue to develop a network of facilities in regional areas

such as Albany.

“We’ve found that the number of people using our highsupport

accommodation facilities has grown and I

predict that we’ll see the same thing happen in Butler.

To manage the ongoing demand over the coming years

we have a major building program planned, both in the

metropolitan area and regional Western Australia. As

well as bricks and mortar we also want to continually

increase the services we provide to our customers and

the number of hours’ worth of services that we provide.”




MSWA Ocean Ride – Members Ride 2018

Did you know that 80 MSWA Members and Clients participated

in the MSWA Ocean Ride – Members Ride last year? The ride

is a cycling challenge completed on a stationary bike over an

eight-week period, concluding the week of the actual event.

Thank you to everyone who took part in the challenge and

congratulations on raising over $10,000 to support people in

WA living with MS and all neurological conditions.

The 2019 MSWA Ocean Ride is coming up on Sunday,

24 November. Register your interest on the website now

to be the first to know about this year’s Members Ride!


The Wilson Wonders who rode 309.44km.

MSWA Albany Ride 2019

This unique cycling event was another huge success thanks

to the generous support of the local Albany community. 180

riders took to the streets of Albany on Saturday, 23 February

to ride either 10km, 40km or 80km around the scenic City,

exploring some of its amazing sights. Over $18,000 has been

raised in 2019 so far, to help people in the Great Southern

region living with MS and all neurological conditions.

Register your interest on our website now, and you’ll be

one of the first to hear when the 2020 date is announced!


MSWA Albany Swim 2019

The 2019 event was the eighth annual MSWA Albany Swim

and was even bigger and better than 2018, attracting 130

participants and raising over $30,000. All funds raised goes

to supporting people living with MS and all neurological

conditions in the Great Southern Region.

Thank you to all of our dedicated supporters, well done.

Entertainment Book

MSWA would like to extend their sincere thanks and

appreciation to everyone who purchased a 2018-2019

Entertainment Book Membership in support of MSWA.

By purchasing a membership through MSWA, you have

helped raise over $3,000 for people in WA living with MS and

all neurological conditions.

Looking to update your Membership for 2019-

2020? Support MSWA with your purchase here:





Rottnest Channel Swim 2019

The Rottnest Channel Swim couldn’t have asked for a better

day on Saturday, 23 February 2019. MSWA had two teams

swimming on our behalf as part of ‘Team MSWA’, both of

whom had a personal connection to the organisation. The two

teams jointly raised over $4,500, which is a fantastic effort!

A special mention to Lauren, Ben, Johnathan and Michael

(pictured) who raised over $3,000 themselves in support

of Lauren’s mum, who is living with MS. The funds raised

through the event will help MSWA make a real difference to

people in WA living with MS and all neurological conditions.

If you’re interested in getting involved in another

Team MSWA event in 2019, visit our website for more

information! www.TeamMSWA.org.au

Since 2016 our MSWA event participants have had the option

to allocate the funds they raise to support people living with

other neurological conditions here in WA.

This has resulted in MSWA having over $310,000 to spend on

much needed equipment for patients with Stroke, Acquired

Brain Injury, Parkinson’s Disease, Motor Neurone Disease and

Huntington’s Disease, on the wards in the major hospitals,

attending Outpatient services, rehabilitation centres and

in their homes. Services supported with equipment have

included Osborne Park Hospital Parkinson’s Service, Sir

Charles Gairdner Hospital Neurology Ward and equipment

loan pool, Fiona Stanley Hospital Head Injury Rehabilitation

Ward and the Neurosciences Unit.

Donations have also funded much needed loan equipment for

people with MND as we replace old equipment, buy additional

stock and we provide equipment to the Sleep Clinic at SCGH.

These purchases are gifts that will keep giving as they benefit

a greater number of patients over time.

A huge thank you to those who donate this funding

and to our Events team for the fantastic events they run

each year.




There have been some very hot summer days this year and

they tell me that summer has now ended.

My youngest daughter and her immediate family, moved to

what we thought was idyllic, sub-tropical Queensland and I

anticipated that we’d be told by them, tales of their having

to combat heat. I would have been able to pass on all the

heat avoidance tricks and great methods for cooling down

that MSWA has told me about.

When Bree’s first story from their new home in sunny subtropical

Queensland, detailed a snake falling out of a tree onto

her head, I ignored my horror and pragmatically dealt with the

TV news reports from there, of fatal shark attacks instead. I

suggested that they only swim in tiled pools. Breathless with

worry, I admired photos of their new home and was then

relieved to see on the map that the ‘uncontrolled bush fires’

were likely to avoid them.

I suppose the very next news of flooding rains had me happily

deduce that it solved the problem of raging fires. Bree’s

keep-fit running group would have had very-improved times

if their running course, which goes along beside the river,

had revealed a crocodile or two, washed upstream a little by

the floodwater’s king tides. Then I remembered that snakes,

having escaped from the raging sub-tropical bush fires and

hiding under houses, were now submerged by floodwaters

and would swim back to dry ground where former Western

Australian families were enjoying their romantic new address.

Oh grief!

My ‘middle’ daughter and her family have moved back to their

newly completed renovations here in Perth and are nearby

so I’ve enjoyed a sleepover there on Christmas Eve and more

recently, was thrilled to see Milla (my oldest grandchild)

dressed for her high school formal. Her very much younger

brother Alby, threaded dinosaurs through the spokes of my

wheelchair and was seemingly very pleased with his efforts.

Older brother Max is able to keep Alby in order, so I guess I

have ‘might’ on my side. The back yard has concrete paths

where Alby and Max can fine-tune their bike-riding skills.

When Alby is biking like a boss, I suspect there’ll be less

dinosaur threading done. Yay!

Back in Queensland at the home of daughter three, my

granddaughters Claire and Lucy now own guinea fowl which,

as we all know, are just the best animals for dealing with

snakes. Their mum Bree also bought both girls a kitten each,

(to be sure, to be sure). The last item in this litany of tragedies

that we’re compiling here was added when she told me of a

hawk swooping down and taking one of the kittens up and

away to wherever hawks take things. No doubt, the kitten will

be replaced by another, hopefully more alert.

My oldest daughter has just recently nursed her man through

concussion and broken ribs that he acquired at work. Thank

goodness each of my three girls is able to run their own

households and all I have to do is worry. I’m not sure that

I’m all that good at worrying because I’ve never altered an

impending outcome. What will be, will be.

The most recent release of news from the banana benders

was under the headline ‘double homicide’. Investigative

procedures by little Lucy have revealed that the dead python

on the lawn was poisoned by the very dead cane toad beside

it. Lucy attests that the snake regurgitated the dead cane

toad because it realised it was poisonous, but it had already

bitten the python. It was a truly riveting news item.

I’m confident the new residents are going to be able

to survive.



Two of our long-term residents made the decision to move

from Treendale Gardens to the new Butler supported

accommodation facility, so they could be closer to family.

Kate moved in with us back in 2015 and Di in 2016;

both having spent some time in our respite house which they

had enjoyed.

Both ladies have been active Members of our Treendale

community, enjoying communal activities in Treendale

and accessing the community using social support funding

organised through the fantastic South West Individual

Options team.



Residents at Fern River, especially those living in the units we

have completed so far, are enjoying the refurbishments which

are well under way.

Upgrades have been made to modernise parts of the

accommodation units as they are now over 20 years old.

Work on several of the units has already been completed

which includes a new bathroom and laundry, new flooring

throughout and replacement of furniture and white goods.

Residents are thrilled to have access to a functional, tasteful

kitchen, and a modern bathroom modified to suit their needs

and assist with promoting their level of independence.



Our cook, Rosemary, has a new volunteer to help whip up

our delicious lunches. Welcome Carney and thanks for your

time. Did we mention that Carney is Rosemary’s husband?

What a team!!

We said goodbye to a popular Member recently. Michelle has

moved to new accommodation in Perth and will now join in

Wilson’s activities. Michelle will be remembered for her bright

rainbow colours and unicorn headbands. We’ll miss your smiles!

A few Members have recently been to Treendale for respite,

a very popular destination for our Members. Speaking of

respite, the very popular carers’ camp to Rottnest will be

happening shortly. Attendees always rave about this four-day

break away.

In February we had two most unusual visitors. The latest

in mini robots. These clever little dancing characters are

designed by Colleen and her husband to be used in care

On 10 January Kate and Di organised a thank you lunch for

the residents and staff of Treendale Gardens and the MSWA

Allied Health in the South West. They ordered in food from

the famous local Farmers Market. The food was delicious,

the company sparkling, and everyone there enjoyed the food

and the chatter.

We were sad to see them leave us but wished

them well, knowing they will enjoy being closer to family

and friends.

Staff are excited to continue with the upgrades for all our

residents, their families and staff to enjoy in the future.

We have recently said farewell to two of our residents

who moved to the new Butler facility to be closer to family

and friends. However, we welcomed a new resident in

February with another moving in shortly.

centres and seniors’ centres to help keep residents moving

and singing along. We all had a good laugh while we joined

in their performance of ‘YMCA’, very clever; could it be that

robots will soon be part of everyday life?

Southside had eight tickets in the MSWA Mega Home Lottery.

We were looking forward to receiving the keys to the new

house but it was not meant to be.

Our physios continue to keep us on our toes – figuratively

speaking – with new equipment coming in regularly. Thanks

Sharon, James, Kirstin and University student, Calvin, who is

currently on work experience.

An annual event popular with Members is our beach

picnic held at Rockingham foreshore. A fun morning with

games, massage and takeaway fish and chips for lunch!

Let’s hope for good weather.


Take a break

in the South West

Treendale is only 20 minutes from Bunbury,

located next to a small parkland with wheelchair

friendly paths and a shopping centre nearby.

MSWA Treendale is our 6-bedroom, 3-bathroom purpose built, accessible respite

home. Our staff are onsite 24/7 and are experienced in supporting people living

with MS.

Located next to our respite home is our wonderful 3-bedroom family holiday unit

where family can get away from the routines, whilst accessing support for their

loved ones if needed. We may even be able to assist you with transportation.

Funding to cover your stay may be available through the Commonwealth Carer

Respite Program or through your DSC or NDIS individual packages. Speak with

our friendly team to chat about your individual needs.

For more information or to book your stay at

Treendale Gardens, phone us on 9725 9994

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