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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THE OFFICIAL MAGAZINE OF <strong>MSWA</strong> mswa.org.au<br />

AUTUMN <strong>2019</strong><br />

<strong>MSWA</strong> Member Kate Gild in her new home at Butler’s Supported Accommodation facility<br />


<strong>2019</strong> CAMPS<br />




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

diagnosis of MS. We’re committed to providing holistic supports; providing a greater<br />

understanding of what to expect.<br />

Lou Hatter, MS Specialist Nurse: 9365 4888 or Community Nurse: 9365 4888<br />




29 Parkhill Way (08) 9365 4888<br />

Fax (08) 9451 4453<br />

Freecall 1800 287 367<br />

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





Nicola Washington: 9365 4840<br />


Manager Community<br />

Care Programs 9365 4851<br />

NDIS TEAM 9365 4824<br />


Wilson Outreach (Mon-Thurs): 9365 4830<br />

Beechboro Lodge (Mon, Fri): 9377 7800<br />

Southside Outreach (Fri): 9592 9202<br />

Albany Outreach (Fri): 9841 6651<br />


1 Mason Street, Davenport 6454 2800<br />


1/21 Cammilleri Street 9754 2320<br />


Manager, Chris Rush: 9385 9574<br />


Manager, Danuta Figurska: 9356 2747<br />


Manager, Jayne O’Sullivan: 9331 5780<br />



50 The Boulevard, Australind<br />

Manager, Linda Kidd: 9725 9209<br />



245 Butler Boulevard, Butler<br />

Manager, Claudia Taylor: 9365 4888<br />


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

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

bulletin@mswa.org.au<br />

or write to<br />

<strong>MSWA</strong>, Locked Bag 2,<br />

Bentley DC WA 6983<br />

The <strong>Bulletin</strong> can also be viewed at<br />

mswa.org.au/bulletin<br />


Greg Brotherson (Editor), Marcus Stafford (CEO),<br />

Paul Cavanagh, Sue Shapland, Ros Harman,<br />

Libby Cassidy, Caitlin Skinner, Sandra Wallace,<br />

Narelle Taylor, Leonie Wellington, and Dawn Burke.<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 />

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

mobility and function. Our Physiotherapists are experts in movement and function, and work in<br />

partnership with you to attain the highest possible level of independence.<br />

Dave Hathorn, Manager: 9365 4837 or Physiotherapy Department: 9365 4834<br />

OCCUPATIONAL THERAPY Occupational Therapists enable Members, and Clients,<br />

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

Occupational Therapy Department: 9365 4888<br />

SPEECH PATHOLOGY Our Speech Pathologists provide support by assessing, diagnosing<br />

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

communication difficulties. We equip Members with information and strategies to promote better<br />

communication and safe swallowing.<br />

Speech Pathology Department: 9365 4888<br />


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

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

life. Attending counselling with our tertiary qualified practitioners enables opportunity<br />

for personal growth and exploration in a non-judgemental environment. We have a Peer<br />

Support & Health Education Coordinator who organises peer connection & events and<br />

supports health and wellness education services. She can be contacted on 9365 4858.<br />

To make an appointment please call:<br />

Lisa Papas, Manager: 9365 4836 or Main Counselling line: 9365 4811<br />

SOCIAL WELFARE Social Welfare Officers assist people living with MS and their<br />

families to access services and supports to remain living independently at home.<br />

They specialise in case management, advocacy and sourcing funding options.<br />

They provide information on benefits and entitlements through Centrelink and other<br />

government departments. Monitor NDIS/WANDIS Services.<br />

Kath Knights, Manager: 9365 4835<br />

INDIVIDUAL OPTIONS We provide long-term and time limited in-home supports<br />

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

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

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

We manage both DSC and NDIS individually funded care packages.<br />

Aileen Ward, Manager: 9365 4851 for more information.<br />

THE NDIS TEAM We can help answer all NDIS questions.<br />

Our experienced team can help determine whether you may be eligible for NDIS support<br />

and assist you with your application. This includes developing an individual plan that<br />

best suits your needs. We support people with all neurological conditions including<br />

MS, Stroke, Parkinson’s Disease, Huntington’s Disease, Acquired Brain Injury and<br />

Motor Neurone Disease, to name a few.<br />

Geoff Hutchinson, Manager NDIS Business Development: 9365 4879<br />

CAMPS & RECREATION <strong>MSWA</strong> provides separate recreation camps for Members,<br />

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

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

support networks.<br />

Coordinator for Camps & Recreation: 9365 4843<br />

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

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

dietary counselling and education, empowering individuals, with practical strategies,<br />

to meet their goals and improve health, wellbeing and independence.<br />

Dietitians Department: 9365 4888<br />

On behalf of the Editorial Committee, welcome to your<br />

first <strong>Bulletin</strong> for the year. We have pleasure bringing all<br />

the latest news to you, but here it is all about us and you.<br />

We need your help.<br />

Every part of the organisation is subject to an audit and<br />

refreshing, and the <strong>Bulletin</strong> magazine is no exception.<br />

We think <strong>Bulletin</strong> is pretty good but of course we are biased!<br />

INSIDE AUTUMN <strong>2019</strong><br />







<strong>MSWA</strong> QUALITY EVALUATION 2018 7<br />



<strong>MSWA</strong> PROVIDES GRANT OF $200,000 FOR RESEARCH<br />


NDIS UPDATE 12<br />






NOVEMBER 2018 17<br />

Do you want to receive<br />

the <strong>Bulletin</strong> online?<br />

Want monthly information updates?<br />

Register your email address today to start receiving our<br />

monthly Vitality e-newsletter 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 />

Whilst we receive positive feedback in our annual survey<br />

we would also love to hear from our readers. How is the<br />

content for you? Is there something else you would like to see<br />

in the <strong>Bulletin</strong>?<br />

Please let us know by emailing us at: bulletin@mswa.org.au<br />

<strong>2019</strong> CAMPS 18<br />









<strong>MSWA</strong> EVENT PARTICIPANTS<br />






2 | <strong>MSWA</strong> BULLETIN AUTUMN <strong>2019</strong> <strong>MSWA</strong> BULLETIN AUTUMN <strong>2019</strong> | 3


“It always seems impossible until it's done.”<br />

Nelson Mandela.<br />

From the desk of the CEO<br />

“Nothing great was ever achieved without enthusiasm.”<br />

Ralph Waldo Emerson.<br />

A message from the General Manager –<br />

Strategic Supports and Residential Options<br />

SUE SHAPLAND RN, BN, Cert MS Nursing, MSCN<br />

Welcome to the first edition of the <strong>2019</strong> <strong>Bulletin</strong> magazine.<br />

In many respects this quote defines our journey with the<br />

National Disability Insurance Scheme (NDIS), which continues<br />

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

but it will be worth it once you have your plan in place.<br />

I’m proud to announce the opening of our newly built $8<br />

million Services Centre and Supported Accommodation<br />

Facility in Butler.<br />

Sue Shapland, General Manager – Strategic Supports &<br />

Residential Options will give our Members a warm welcome<br />

to Butler in this edition and you will get to hear from <strong>MSWA</strong><br />

Member, Kate Gild who was the first resident to move into her<br />

new home there.<br />

Recognising the large proportions of our State, we are always<br />

considering how we can cater to all of our regional Members.<br />

<strong>MSWA</strong> is proposing to build a new Services Centre and High<br />

Support Accommodation facility in Albany which is currently<br />

in the planning and proposal stage.<br />

These Centres could not be built without the strong foundations<br />

of our ongoing commercial activities and financial success.<br />

We have a new General Manager – Member and Client<br />

Services, Nicola Washington who has a great wealth of<br />

experience and will manage our continued growth in Member<br />

and Client Services.<br />

With three quarters of the budget year behind us, I am pleased<br />

to report that our $3 million investment into neurological<br />

research is contributing to fantastic results and we will keep<br />

you updated as the research progresses.<br />

I am pleased to announce <strong>MSWA</strong>’s involvement with another<br />

leading WA not-for-profit, the West Australian Symphony<br />

Orchestra (WASO), for their <strong>2019</strong> season. <strong>MSWA</strong> will be<br />

partnering with WASO for their ‘Under 30s’ program, which<br />

will allow anyone under the age of 30 to pay just $25 for<br />

tickets to a range of concerts across the <strong>2019</strong> program.<br />

Our partnership will also provide benefits and special offers<br />

for our <strong>MSWA</strong> Members throughout the season. This will<br />

include access to special performances as well as a standard<br />

‘<strong>MSWA</strong>’ discount, to name just a few of the benefits!<br />

It has been long understood that music is powerful! We now<br />

know that the benefits of music extend to the wellbeing of<br />

motor and cognitive skills and overall brain health. It is very<br />

fitting therefore, for us to partner with WASO in helping<br />

them make music more accessible to the younger market,<br />

particularly at a time when more and more young people’s<br />

lives are touched by the effects of a neurological condition.<br />

The results are in for the <strong>MSWA</strong> reginal events Albany Ride<br />

and Albany Swim, which saw over 300 participants raise<br />

more than $50,000. The Great Southern region has once<br />

again demonstrated their support for people living with<br />

neurological conditions. Congratulations and thank you for<br />

your continued support.<br />

Our largest fundraising initiative, the Mega Home Lottery,<br />

once again sold out in a record number of weeks earlier this<br />

month. I would like to thank all of our dedicated staff involved<br />

who deliver outstanding results for our Customers, and our<br />

generous supporters who purchase tickets.<br />

As <strong>MSWA</strong> continues to support people living with all<br />

neurological conditions, the need for more tailored and<br />

larger premises is needed. Our time in the leased property<br />

in Bentley has now come to an end and Belmont is our new<br />

home from April.<br />

Initially it will provide a base for the Administration, Marketing<br />

and Finance personnel, and Member and Client services<br />

equipment will be stored in the warehousing facility already<br />

on the land. Over time, the premises will become dualpurpose<br />

with extended Member and Client services being<br />

made available in the first instance to the newly diagnosed<br />

and low support Members and Clients.<br />

World MS Day is fast approaching on Thursday, 30 May and<br />

<strong>MSWA</strong> will once again have an opportunity for you to get<br />

involved. Plus, our annual Step Up for <strong>MSWA</strong> (the stair-climb<br />

of Perth’s tallest building) is Sunday, 30 June.<br />

Until next time!<br />

I recently found some great quotes by Ralph Emerson, very<br />

worth a Google search!<br />

I think this quote is very relevant for us at <strong>MSWA</strong>. We have<br />

achieved, and will continue to achieve, great success driven<br />

by enthusiastic, passionate and caring staff and volunteers<br />

across the whole organisation.<br />

You may notice my role title has changed? Due to ongoing<br />

expansion across all parts of Member and Client Services,<br />

particularly over the past three to five years, the General<br />

Manager role became too big for one person. We have<br />

strategically divided the role and welcomed Nicola Washington<br />

as the General Manager Member and Client Services, in<br />

November last year.<br />

My new role now focuses on key aspects of Safety and<br />

Quality, Strategic projects including the allocation of Research<br />

funding, and our expanding Residential Options including<br />

accommodation and respite.<br />

Our teams have been busy as we have opened the 10-unit<br />

accommodation facility at Butler; what an amazing place it is.<br />

Thanks to Andrea Taylor who contributed to most aspects of<br />

the facility, including the design and décor which has turned<br />

it into a home. Sandra Wallace played a major role in fit out<br />

as part of her Project Management role and the results are<br />

gratifying. Everyone who visits, and of course the residents<br />

and their families and friends, are blown away by the design<br />

and set out. It’s pretty impressive but more importantly, the<br />

residents love their new homes and the support provided by<br />

our onsite staff.<br />

Albany is our next location for another major build featuring<br />

another Services Centre and High Support Accommodation<br />

facility. We will keep you posted regarding the timelines once<br />

we have a start date.<br />

Of course, building these Centres wouldn’t be possible<br />

without the ongoing success we experience, through hard<br />

work and sound financial management, through our Lotteries,<br />

events, and investments. We can buy the land and build these<br />

Centres to our own design, which really is quite unique in our<br />

sector.<br />

Our team will be working hard to ensure we comply with<br />

the National Disability Insurance Scheme (NDIS) Quality<br />

and Safeguarding Framework which is expected to commence<br />

in 2020.<br />

Our residential respite homes at City Beach and Treendale,<br />

are experiencing increased demand and more Members<br />

are including respite funding in their NDIS package which<br />

provides funding for 24-hour care. If you need any assistance<br />

with developing your NDIS plan or would like to know more<br />

about respite options, don’t hesitate to contact us through<br />

Get-in-touch@mswa.org.au or the NDIS team by email<br />

ndisenquiries@mswa.org.au<br />

We also have a fantastic 3-bedroom Family Unit at Treendale<br />

where you can book a stay. If you need assistance with care,<br />

that also can be arranged onsite.<br />

One of the best aspects of my role is the Research component.<br />

<strong>MSWA</strong> proudly allocated $3 million to neurological research<br />

this financial year. In November, <strong>MSWA</strong> was added to the<br />

UWA Benefactor Wall in recognition of the funding provided<br />

to WA researchers linked with UWA. Our allocation to<br />

MSRA was $1.5 million, with a third of that dedicated to the<br />

International Progressive MS Alliance, and additional MS<br />

funding was allocated to important projects and key staffing<br />

positions at the Perron Institute.<br />

What is also really exciting is the funding we have allocated<br />

to projects supporting research into other major neurological<br />

conditions including MND and Stroke.<br />

Many of our <strong>MSWA</strong> event participants have allocated the funds<br />

they raised to support people living with other neurological<br />

conditions, here in WA. This has amounted to over $310,000<br />

since 2016! <strong>MSWA</strong> has purchased vital equipment on behalf<br />

of the major hospitals, outpatient services and rehab centres<br />

which benefits a greater number of patients over time. We<br />

have also expanded the MND loan equipment pool and<br />

replaced old equipment initially purchased using DSC funding<br />

for the NCCC Program. Liaising with the hospital staff to buy<br />

much-needed equipment for their patients is another really<br />

rewarding part of my role!<br />

<strong>2019</strong> is shaping up as another busy but rewarding year and<br />

the continued NDIS roll out will see more of our Members<br />

benefit from accessing the funding they need to support them<br />

to live a better life.<br />

The difference <strong>MSWA</strong> makes is really quite amazing and it’s<br />

what spurs our staff on to dig deeper and do more.<br />

If you need any advice or information about MS or <strong>MSWA</strong><br />

services, don’t hesitate to telephone 9365 4888 or use<br />

the Get-in-touch@mswa.org.au link.<br />

4 | <strong>MSWA</strong> BULLETIN AUTUMN <strong>2019</strong> <strong>MSWA</strong> BULLETIN AUTUMN <strong>2019</strong> | 5

Welcome to the <strong>Autumn</strong> edition of our Member <strong>Bulletin</strong>.<br />

A message from the General Manager –<br />

Member & Client Services<br />


First, please let me introduce myself as the new General<br />

Manager of Member & Client Services. I joined <strong>MSWA</strong> last<br />

November just before Christmas, so I was lucky enough to get<br />

to several wonderful events and meet some of our Members.<br />

I have previously worked across several customer service<br />

sectors and have a passion for improving the customer<br />

experience, so I am looking forward to what we can achieve<br />

for our Members as we move forward in <strong>2019</strong>. I am very<br />

excited to join such a wonderful organisation which plays an<br />

important role in our community.<br />

Sue Shapland is now General Manager of Strategic Supports<br />

and Residential Options. The split in the roles is due to the<br />

successful growth the organisation has gone through over the<br />

past few years and will enable us to pursue new opportunities<br />

as we continue to grow into the future.<br />

Our team continues to be busy with the roll out of the National<br />

Disability Insurance Scheme (NDIS). There are still some<br />

significant delays with the processing of plans through the<br />

NDIA, but we are continuing to work with them to find ways<br />

to process plans as quickly as possible.<br />

The next NDIS roll out areas will commence on 1 July,<br />

<strong>2019</strong>. This roll out includes Great Southern (Albany), Central<br />

North Metro (Western Suburbs) and the South East Metro<br />

(Victoria Park and Surrounds). A full list of suburbs can<br />

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

or contact our <strong>MSWA</strong> NDIS team.<br />

If you are new to the NDIS, transferring from a WANDIS<br />

plan, or renewing your current plan, please do not hesitate<br />

to contact our team who are here to help you through the<br />

process and get the best out of your plans. Our team can be<br />

contacted at ndisenquiries@mswa.org.au<br />

Some very exciting news for the start of <strong>2019</strong>. Our brand<br />

new Butler Centre was completed in January <strong>2019</strong> and we<br />

are very excited to be offering services out of this wonderful<br />

building in our Northern Suburbs. The Service Centre is truly<br />

amazing and fitted out to the highest standard. If you would<br />

like to find out more or book a service, please call 9365 4888<br />

or email enquiries@mswa.org.au<br />

I am sure <strong>2019</strong> is going to be another busy and successful<br />

year for <strong>MSWA</strong>. Our main objective is to provide you with<br />

excellent services and ensure you have the information,<br />

support and advice you require. Your feedback is<br />

important to enable us to continuously improve our<br />

services, so if you would like to provide any feedback<br />

please contact us on 9365 4888.<br />

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

EVALUATION 2018<br />


As part of our contractual compliance with both the Department<br />

of Communities Disability Services and the National Disability<br />

Insurance Scheme (NDIS), <strong>MSWA</strong> was reviewed by external<br />

Quality Assessors in November and December 2018.<br />

The audit team reviewed the various DoC-DS programs<br />

including our supported accommodation facilities, Outreach<br />

Groups and in-home supports. They looked at a sample<br />

size of various documents, talked to over 60 Members<br />

and Clients, met with seven carers and chatted with staff<br />

across the various locations. In this instance they visited all<br />

four accommodation sites, five Outreach Groups, including<br />

Bunbury, and met or chatted with both individuals and groups<br />

to get feedback and comments.<br />

We were assessed against the six National Disability<br />

Standards. It was very pleasing to learn that we again comply<br />

with all the standards and there were no ‘required actions’<br />

which are areas of concern requiring prompt action to rectify<br />

issues.<br />

We received many positive comments via feedback provided<br />

through the final report:<br />

“The organisation’s services and environments were<br />

described by the large majority of clients and families as being<br />

so important, valuable and enjoyable that they had become a<br />

major part of their lives, and using its services was something<br />

they greatly looked forward to.”<br />

We also received five opportunities for service improvements,<br />

which are suggestions made by the audit team, based on<br />

some feedback. We have taken on board these comments<br />

and will make improvements with a focus on improving<br />

communication with clients and families.<br />

Under the NDIS, a new Quality and Safeguarding Framework<br />

will be implemented in 2020; this will require more<br />

comprehensive external reviews and some changes within<br />

our current systems and processes. We are already working<br />

on some of the changes that will be required.<br />

We would like to thank all the Members, their carers’,<br />

and our staff, who participated in the audit. As<br />

always, your feedback is important to us and helps us<br />

make improvements.<br />

Want to access research articles?<br />

Here are the places you can access up to date research<br />

articles relating to multiple sclerosis:<br />

• Vitality – Our monthly research focussed e-newsletter<br />

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

• Right here as part of your Member magazine <strong>Bulletin</strong>.<br />

It includes great research articles and information every quarter.<br />

Just email communications@mswa.org.au if you would like any further information.<br />

6 | <strong>MSWA</strong> BULLETIN AUTUMN <strong>2019</strong> <strong>MSWA</strong> BULLETIN AUTUMN <strong>2019</strong> | 7



Read more at:<br />

mswa.org.au/researchupdate<br />

SUE SHAPLAND RN, BN, Cert MS Nursing, MSCN<br />

Here we provide summaries of research sourced from<br />

websites in Australia and around the world, we hope it’s of<br />

interest to you.<br />

From the Barts website in the UK<br />

Prevalence of asthma in MS: A United States populationbased<br />

study. Hill E, Abboud H, Briggs FBS. Mult Scler Relat<br />

Disord. 2018 Dec 12;28:69-74<br />

MS and asthma are complex multifactorial diseases; adversely<br />

impacting daily function. As the prevalence of asthma in<br />

people with MS isn’t clear, this study sought to characterise<br />

the prevalence of asthma in people with MS.<br />

METHODS: A U.S. population-study was conducted using<br />

electronic health record information for 56.6 million Americans.<br />

The researchers evaluated the prevalence of asthma in people<br />

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

gender, and race.<br />

Results: The prevalence of asthma was significantly greater<br />

among people with MS; three times more common, with the<br />

greatest amongst the young and the elderly.<br />

Conclusion: Asthma is significantly more common in people<br />

with MS than in the general population - particularly in the<br />

young and elderly irrespective of gender and race. The results<br />

add to the growing MS comorbidity literature and emphasise<br />

the need for management as a part of comprehensive MS<br />

patient care.<br />

From MS News Today Daily Digest<br />

Comorbid anxiety, depression, and cognition in MS and other<br />

immune-mediated disorders. Christiane E. Whitehouse, John<br />

D. Fisket al.<br />

This study sought to determine if anxiety and depression<br />

are associated with cognition in MS, and whether these<br />

associations are similar in other immune-mediated<br />

inflammatory diseases; including inflammatory bowel disease<br />

(IBD) and rheumatoid arthritis (RA) and in anxious/depressed<br />

individuals without these conditions.<br />

The study included 255 people with MS, 247 with IBD, 154<br />

with RA and 308 with anxiety and depressions. Several<br />

cognition tests and scales were conducted.<br />

Results: All groups exhibited higher rates of impairment in<br />

processing speed, verbal learning, and delayed recall memory<br />

compared to general population norms.<br />

Higher levels of anxiety symptoms were associated with<br />

slower processing speed, lower verbal learning, and lower<br />

working memory performance. Higher levels of depression<br />

symptoms were associated with slower processing speed.<br />

These associations did not differ across cohorts.<br />

Conclusion: Managing symptoms of anxiety and depression<br />

in MS, as well as other immune-mediated conditions is<br />

important to mitigate their effect on cognition.<br />

Neurofilament Light Chain Levels in Blood as a Biomarker<br />

of MS Activity and Treatment Response. Jens Kuhle,<br />

Harald Kropshofer et al; Neurology March 05,<strong>2019</strong>;92(10)<br />

This study assessed the value of blood neurofilament light<br />

chain (NfL) as a biomarker of recent, ongoing, and future<br />

disease activity, tissue damage, and its utility to monitor<br />

treatment response in relapsing-remitting multiple sclerosis<br />

(RRMS).<br />

NfL was measured in blood samples from 589 RRMS patients<br />

and 35 healthy controls and compared with clinical and MRI<br />

related outcomes.<br />

Results: At baseline, NfL levels were higher in MS patients<br />

than in healthy controls and correlated with MRI lesion load.<br />

NfL levels were associated with an increased number of new<br />

or enlarging lesions, relapses, brain volume loss and risk of<br />

confirmed disability worsening.<br />

Conclusion: Blood NfL levels are associated with clinical and<br />

MRI-related measures of disease activity and neuroaxonal<br />

damage which have prognostic value. Our results support the<br />

use of blood NfL as an easily accessible biomarker of disease<br />

evolution and treatment response.<br />

From the UK MS Trust<br />

Bexarotene drug trial for myelin repair.<br />

This drug, currently used to treat certain types of skin cancer,<br />

and taken as tablets once daily, is being tested for its potential<br />

to repair myelin.<br />

The MS damage to myelin interrupts or blocks nerve messages.<br />

In the earlier stages of MS, oligodendrocytes (a type of nerve<br />

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

remyelination. As MS is more established, these cells stop<br />

functioning or are killed off and myelin damage isn’t repaired,<br />

resulting in increasing disability.<br />

Bexarotene binds to special locations (receptors), called<br />

retinoid X receptors, on the oligodendrocytes. Lab studies<br />

have found that drugs which act on these receptors can<br />

encourage oligodendrocytes to remyelinate, offering the<br />

potential to reverse damage caused by MS and improve<br />

symptoms.<br />

A Phase II trial is recruiting 50 people with relapsing remitting<br />

MS, currently receiving therapy. Half will take bexarotene<br />

and half will take a placebo. The main aim of the study is<br />

to monitor the safety of bexarotene and to assess whether<br />

bexarotene can promote remyelination by comparing MRI<br />

scans, measuring EDSS and visual evoked potentials.<br />

A randomised double-blind placebo-controlled feasibility<br />

trial of flavonoid-rich cocoa for fatigue in people<br />

with relapsing and remitting MS. Coe S, Cossington J,<br />

Collett J, et al.<br />

Results from researchers at Oxford Brookes University<br />

suggest a daily mug of cocoa, made from dark chocolate,<br />

could improve MS fatigue.<br />

Cocoa made from dark chocolate contains high levels of a<br />

group of chemicals called flavonoids which could potentially<br />

reduce fatigue through several biological processes. Having<br />

shown a single drink improved fatigue, researchers wanted to<br />

find out what would happen when you have a mug of cocoa<br />

every day for six weeks.<br />

40 people with relapsing remitting MS diagnosed within the<br />

last 10 years and with moderate to severe fatigue took part<br />

in this study. Everyone drank a mug of cocoa first thing in the<br />

morning for six weeks; half drank cocoa with high flavonoid<br />

content; the other half drank cocoa with low flavonoid content.<br />

Participants rated fatigue level three times a day and visited<br />

the study centre for further testing at the beginning, middle<br />

and end of the six-week period.<br />

Results: After six weeks there was a small improvement in<br />

fatigue levels in 11 of those drinking high flavonoid cocoa and<br />

in eight of those taking the low flavonoid cocoa. Those taking<br />

the high flavonoid cocoa were able to walk slightly further in a<br />

six-minute walking test. There was also some improvement in<br />

the pain and discomfort component of health-related quality<br />

of life questionnaire.<br />

Condition: The results suggest that high flavonoid cocoa could<br />

lead to a modest improvement in fatigue levels, but a bigger<br />

study would be needed to confirm the results.<br />

Fatigue is a common symptom in MS and can have a major<br />

impact on daily life. Many factors can contribute to fatigue so<br />

finding ways to cope requires a very individual approach. If a<br />

daily mug of cocoa continues to show potential in future larger<br />

studies, it would be a simple, safe and low-cost addition to<br />

the fatigue management toolkit.<br />

From MS Research Australia<br />

Treating MS In Pregnancy.<br />

MS predominately affects young women when they are<br />

starting or growing their families, making treatment decisions<br />

even harder.<br />

Two new publications seek to provide evidence and guidelines<br />

regarding the use of disease modifying therapies during<br />

pregnancy.<br />

1. A large international study, led by Australian researcher Dr<br />

Vilija Jokubaitis from Monash University, is using data from<br />

MSBase, which stores information about treatments and<br />

outcomes from thousands of people with MS world-wide.<br />

The analysis included over 9000 women with MS, aged 15 to<br />

45, of which 1,178 women recorded 1,521 pregnancies. 42%<br />

of these pregnancies occurred whilst taking a MS disease<br />

modifying therapy. On average, women were on treatment<br />

for 30 days of their pregnancy. These pregnancies were<br />

compared to those which occurred within a year of stopping<br />

treatment (20%) and pregnancies where the woman had<br />

received no treatment for over a year (39%).<br />

Results: Comparing pregnancy outcomes in women on<br />

treatment to those off treatment, there was no difference<br />

in the rates of full-term pregnancies, pre-term or premature<br />

deliveries or miscarriages. Women were more likely to have<br />

had an induced abortion if they were on MS treatments<br />

carrying the higher pregnancy classifications i.e. evidence of<br />

some harm to the foetus in pregnant women or evidence of<br />

harm from animal studies.<br />

2. The Association of British Neurologists released consensus<br />

guidelines for the treatment of MS in pregnancy.<br />

These were based on data from pregnancy registers<br />

for some MS medications currently available and other<br />

published information.<br />

The guidelines have very detailed recommendations for<br />

clinicians about the use of each of the currently available<br />

medications during pregnancy and identified these key points<br />

for women with MS who wish to have children:<br />

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Results: MS treatment should not be delayed until a woman<br />

has completed her family and doctors should keep in mind<br />

the possibility of pregnancy when prescribing treatment to all<br />

women with MS of childbearing age.<br />

Relapse rates naturally fall during pregnancy, and so many<br />

women with MS choose to stop MS medications once they are<br />

pregnant, however, first line injectable treatments (interferon<br />

betas and glatiramer acetate) can be continued throughout<br />

pregnancy. It is recommended that other types of treatments<br />

are stopped where possible.<br />

For women with very active MS, treatment throughout<br />

pregnancy should be considered.<br />

Corticosteroids, a standard treatment for relapse, can be<br />

given during pregnancy and while breastfeeding to women<br />

who experience relapses.<br />

Conclusion: Women with MS are no more likely to have high<br />

risk pregnancies than other women, and unless there are<br />

other reasons, MS should not limit the birthing options or<br />

management of delivery.<br />

From MSIF<br />

Progressive MS International Collaborative Networks.<br />

Multi-year grants investing significant amounts of funds, are<br />

now supporting networks of researchers working together to<br />

accelerate understanding and treatments for progressive MS.<br />

This information has been sourced from Health Direct,<br />

a Government initiative, visit https://www.healthdirect.<br />

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

While it can happen any time, it's more common to catch the<br />

flu, or experience flu-like symptoms, in the colder months of<br />

the year (April to October).<br />

Six ways to fight the flu:<br />

• Get an annual flu vaccination to be protected. It reduces<br />

the chances of both catching and transmitting the flu. This<br />

is especially important for those at risk of complications<br />

arising from influenza and those in close contact with atrisk<br />

people. See your GP or local pharmacy for advice.<br />

• Wash your hands; good hygiene is one of the best ways to<br />

prevent the spread of colds and flu.<br />

• Cover your coughs and sneezes; this prevents the spread<br />

of infected droplets to others and surfaces.<br />

• Bin your tissues; throw disposable tissues in the bin<br />

after use.<br />

These networks are focusing on:<br />

• Drug discovery programs that identify and validate<br />

molecular and cellular targets, and screen and characterise<br />

potential drug candidates which may be either repurposed<br />

or first-in-human drugs<br />

• The discovery, advancement and validation of new or<br />

existing biological or imaging biomarkers<br />

• Proof-of-concept trials and trial designs, including, but not<br />

limited to trials in remyelination, neuroprotection, enhanced<br />

plasticity.<br />

The lead researchers for the networks are:<br />

• Douglas Arnold, M.D., McGill University (Canada) in<br />

collaboration with 16 investigators from The Netherlands,<br />

U.K., U.S., and Switzerland<br />

• Gianvito Martino, M.D., Division of Neuroscience, San<br />

Raffaele Hospital Milan (Italy) in collaboration with 13<br />

Investigators from Italy, France, Germany, Europe, Canada<br />

and the U.S<br />

• Francisco Quintana, Ph.D., Brigham and Women’s Hospital<br />

(U.S) in collaboration with 8 Investigators from the U.S.,<br />

Canada, Israel and Sanofi Genzyme.<br />

<strong>MSWA</strong> has allocated $500,000 in 2017/18 and 2018/19 to<br />

the Progressive MS Alliance<br />


SUE SHAPLAND RN, BN, Cert MS Nursing, MSCN<br />

• Avoid sharing; don’t share cups, plates, cutlery or towels<br />

with others if possible.<br />

• Self-care at home; you can treat the symptoms of a mild<br />

cold or flu yourself. Most people will get better within 7-10<br />

days without any treatment. You can relieve symptoms by<br />

getting plenty of rest, drinking plenty of water and nonalcoholic<br />

drinks, keeping warm, eating a healthy diet and<br />

avoiding exposure to cigarette smoke. Your pharmacist can<br />

assist with over the counter treatments if necessary.<br />

• If you live alone let someone know you aren’t feeling well so<br />

they can keep an eye on you.<br />

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

temperatures, headache, breathing difficulties or a rash, or<br />

if you are worried at all.<br />

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

to a registered nurse, call health direct on 1800 022 222.<br />

<strong>MSWA</strong> PROVIDES GRANT OF<br />

$200,000 FOR RESEARCH<br />


A $200,000 grant from <strong>MSWA</strong> will support research into<br />

proteins linked to the progression of motor neurone disease<br />

(MND) as well as a ground-breaking national study into<br />

the needs of carers and families of people experiencing<br />

end-of-life care and bereavement.<br />

The grant is <strong>MSWA</strong>’s first funding allocation to research into<br />

MND (also known as amyotrophic lateral sclerosis, or ALS).<br />

<strong>MSWA</strong> CEO Marcus Stafford AM said the decision to support<br />

MND research reflected the expanded charter of <strong>MSWA</strong> as an<br />

organisation that helps people living not only with MS, but all<br />

neurological conditions.<br />

“As Australia’s largest contributor of funding for MS research,<br />

we began to diversify our research investment program last<br />

year when we supported an investigation into stroke,” said<br />

Mr Stafford.<br />

“This year we continue to broaden our scope with this grant to<br />

the Motor Neurone Disease Research Institute of Australia.”<br />

Dr Sarah Rea of The University of Western Australia will lead<br />

a study into the interactions between p62 and TDP-43, which<br />

aggregate in the cell body in most patients with MND. It is<br />

hoped the study will help identify a target for future research<br />

into potential therapeutics for this neurological condition.<br />

Professor Samar Aoun of La Trobe University in Victoria<br />

will lead the other <strong>MSWA</strong>-supported research project,<br />

a national survey to help better understand the needs of<br />

family members who care for people with MND. The<br />

results will provide a foundation for developing more<br />

targeted supports and resources to help families manage<br />

decision-making and grief.<br />

Janet Nash, Executive Officer of the Motor Neurone Disease<br />

Research Institute, said donations received each year<br />

were never enough to support all of the excellent funding<br />

applications that warranted funding.<br />

“<strong>MSWA</strong>’s offer of two grants of $100,000 each will enable two<br />

additional researchers to lead their teams toward discovery<br />

and improved care in <strong>2019</strong>,” said Ms Nash.<br />

“Both MND and multiple sclerosis are neurodegenerative<br />

conditions. Outcomes from research in one disease may<br />

well translate to benefit for the other – and maybe more<br />

neurodegenerative conditions as well.”<br />

<strong>MSWA</strong>’s grant to MNDRIA is part of its record $3 million<br />

investment in research funding for neurological conditions for<br />

2018-19.<br />

“Thanks to the generosity of our supporters, <strong>MSWA</strong> is in a<br />

position to broaden our investment in research and support<br />

scientific investigations into other neurological conditions,<br />

such as MND and stroke,” said Mr Stafford.<br />

“While <strong>MSWA</strong> strives on a daily basis to improve the lives<br />

of people living with neurological conditions, we believe that<br />

medical research provides hope to the people we support and<br />

their families.”<br />

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The NDIA recently released the second report for year six<br />

of the National Disability Insurance Scheme, and I thought<br />

it would be timely to update you with some of the key data<br />

on how it is all going. A word of warning, this article is full of<br />

stats so if you want to skip to the big reveal; the NDIS still has<br />

some work to do, but overall is trending up.<br />

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

seems like only yesterday that the NDIS was introduced. While<br />

the roll out has had some twists and turns, it’s important to<br />

recognise that its still very young and soon the whole country<br />

will be covered by one equitable funding scheme which is no<br />

small feat.<br />

The NDIS is how big? What jumps out from this report is<br />

the number of participants who have already made their way<br />

onto the NDIS. As of 31 December 2018, more than 244,000<br />

Australians are receiving NDIS funding. West Australians made<br />

up 9,607 of this number or approximately 68% of the State’s<br />

estimated intake. Importantly, 3,227 of these participants are<br />

receiving individualised support for the first time. The report<br />

also highlights that the WANDIS to NDIS transfers remain a big<br />

priority for the NDIA with 2,949 transfers finalised compared<br />

to only 967 in the previous quarter. This reflects what <strong>MSWA</strong><br />

have experienced and explains some of the wait for new NDIS<br />

customers receiving plans.<br />

While I acknowledge that the planning process has taken<br />

longer than expected, it’s good to see so many people now<br />

have access to funding for the first time, and I am optimistic<br />

about further improvements over the next 6 – 12 months. This<br />

optimism is due to the number of plan activations we have<br />

seen over the past three months and the announcement late<br />

last year that Mission Australia and APM will be acting as<br />

Local Area Coordinators and assisting with plan development<br />

into the community.<br />

So where does the funding go? In WA, multiple sclerosis<br />

customers make up 2.7% of the $0.5 billion total of annual<br />

committed funding, with core support – daily activities<br />

accounting for 48.4% of funded services. People living with<br />

Autism make up the largest group of NDIS participants with<br />

34% of the WA market with Mental Health second.<br />

One important stat from this quarterly report is that only 75%<br />

of committed funds were utilised in 2018 which means that<br />

people are still not making full use of their NDIS funding.<br />

Unused funding is returned to the NDIA, so if you have any<br />

questions about how to make the most of your NDIS plan<br />

please reach out to us today.<br />

Is it making a difference? Included in this report were<br />

findings from a recent study of participants associated<br />

with the NDIS at least two years. The survey asked, “has the<br />

NDIS helped?” across various categories and showed that<br />

80% of respondents in the 25 and over age group reported<br />

that their daily living has been improved. The study also<br />

showed that 68% of respondents felt that their social and<br />

community participation improved under the NDIS which are<br />

both positive outcomes.<br />

So, what needs improvement? If there was one aspect<br />

of the NDIS vision that still needed work, it was ‘supporting<br />

people into employment opportunities’ and with the number of<br />

participants in employment not budging from 21% throughout<br />

the six years of the Scheme. The employment rates of people<br />

living with multiple sclerosis is slightly better at 22% while<br />

the rates for those under the age of 25 is higher still, so<br />

maybe things are beginning to change. Pleasingly the NDIA is<br />

acting on this matter by setting up a Participant Employment<br />

Taskforce to look for answers to the problem.<br />

Overall, my reading of this report is positive for both the<br />

NDIA and participants. The feedback we are getting from<br />

<strong>MSWA</strong> Members who have commenced their NDIS funding<br />

is generally positive, and we hope that once the Scheme<br />

finalises its rollout in July, service delivery will continue to<br />

improve. I would still expect an environment of change for the<br />

next couple of years, however, <strong>MSWA</strong> will continue to work<br />

with our Customers to navigate this changing environment<br />

and focus on improving our service delivery to you.<br />

As always if you have any questions about the NDIS<br />

or your plan in general, please don’t hesitate to<br />

contact your NDIS team at ndisenquiries@mswa.org.au<br />

or call 1300 097 989.<br />

Health Education<br />

What kind of Assistive Technology (AT) could help make life<br />

easier for you? Come along to a workshop offered by <strong>MSWA</strong><br />

Occupational Therapy staff to find out more.<br />

Workshops for people living with all neurological conditions<br />

are offered at Rockingham, Wilson, Beechboro and Joondalup/<br />

Butler. Topics include:<br />

Assistive Technology (AT) refers to aids that help you to do<br />

something, such as:<br />

- cooking tools such as an electric can opener<br />

- housekeeping tools like a long-handled duster or a wheeled<br />

laundry cart<br />

- bathroom aids such as a grab bar<br />

- grooming tools including long handled shoe horn<br />

- reading tools such as an app that reads from your phone<br />

or lap-top<br />

- writing aids including foam grips for pens<br />

- typing alternatives such as voice recognition apps<br />

- scheduling tools like the calendar function on a smartphone<br />

Cognition: Join a cognition group to learn how to improve<br />

your attention, memory and thinking, and to share your<br />

experiences with others. People living with MS commonly<br />

experience changes in cognition such as taking longer to take<br />

in and process information, or having more trouble recalling<br />

details of a task or a discussion.<br />

Managing fatigue: Fatigue is the most commonly reported<br />

symptom in MS, with most people living with MS experiencing<br />

this at some time. Fatigue can impact all areas of life and can<br />

be experienced as overwhelming weariness, tiredness or lack<br />

of energy. Come along to a fatigue workshop to share ideas<br />

and gain strategies about how to conserve your energy and<br />

work smarter.<br />

Contact Occupational Therapy on 9365 4888 or<br />

OT.referrals@mswa to find out more about upcoming<br />

workshops.<br />

Peer Support<br />

Peer support can help people living with a neurological<br />

condition and their family and friends to connect with others<br />

who understand from personal experience. By reducing<br />

feelings of isolation and loneliness, peer support can empower<br />

people to improve their health and wellbeing.<br />

Peer support can be provided in a range of ways, including<br />

peer support groups, one to one and online.<br />

<strong>MSWA</strong> offers a range of peer support groups for:<br />

- people living with MS with groups held in Currambine,<br />

Butler, Beechboro and Rockingham<br />

- regional people living with MS and their support people with<br />

groups held in Northam and Geraldton<br />

- carers of people living with MS with groups held in<br />

Currambine, Manning and Rockingham<br />

Peer support is available for people living with all neurological<br />

conditions through a range of groups and workshops such as<br />

expressive journaling, restorative sound, stress busters, and<br />

mindfulness meditation.<br />

We’re looking to continue to build the peer support we offer<br />

– watch this space!<br />

Contact Sabena on Sabena.Lund@mswa.org.au or<br />

9365 4858 or for more information.<br />

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KELLIE HANSEN, <strong>MSWA</strong> COUNSELLOR<br />

“We don’t stop playing because we grow old; we grow old<br />

because we stop playing.” - George Bernard Shaw.<br />

Often when we think of play we think of children. Play is a<br />

child’s natural form of communication. It does not need to<br />

be taught or directed as it is natural and spontaneous. It’s so<br />

important in fact the UN has listed play as one of the universal<br />

rights of children. Children use play to grow and learn, they<br />

can safely try out new ideas and concepts and through<br />

play, problem solve and work through emotions, develop<br />

relationships and have fun.<br />

During my training in child centred play therapy, we were<br />

required to practice the techniques and theories using<br />

roleplay, not just as the therapist but also in the role of the<br />

child. I was taken aback at how quickly I lost myself in the<br />

toys and playing out stories and emotions and how amazing I<br />

felt afterward. Lighter, freer and enriched. I could not help but<br />

reflect why I had lost contact with that playful part of myself<br />

and how it could be a crucial part in not just child, but also<br />

adult therapy.<br />

At what point on our road to adulthood do we discard<br />

this natural tool of play? Adults may be concerned that to<br />

participate in playful activities or behaviours they may be<br />

judged as childish. Given all the benefits I have previously<br />

mentioned, I find it difficult to see being childish in the form of<br />

play as a negative but rather an attribute. If as adults we can<br />

fuel our imaginations, be more creative and be free to explore<br />

in an unstructured way, surely that benefits not just ourselves<br />

but our community.<br />

For many years now, tech companies have understood the<br />

link between play and the benefits in the work place. Allowing<br />

staff to engage in free play during work, providing yoga or<br />

other activities in the workplace, organising social activities,<br />

all assist in increased staff morale, reduced burnout, lower<br />

staff turnover, encourages teamwork, increases creativity and<br />

problem solving. Play can help us function better when under<br />

stress and rejuvenate both mind and body. These companies<br />

have learned that value is not necessarily the amount of time<br />

you work but the quality of that work and that is directly linked<br />

to a person’s wellbeing.<br />

Play does not always have to be a physical activity it can also<br />

be a state of mind. Engaging with strangers while waiting in<br />

a queue, being able to see the fun and colour in the world,<br />

stopping to admire nature, art and beauty, viewing the world<br />

with curiosity and openness. Being able to tap into these<br />

parts of ourselves can boost our energy as well as improve<br />

our brain function and open new pathways. It can allow us<br />

to try new things, be flexible and learn to trust and feel safe.<br />

It helps us build skills to improve our connections to family,<br />

friends and co-workers.<br />

Ultimately, play can add joy to our lives and the lives of others.<br />

Some ideas to bring play into your life; find a hobby, join a club,<br />

organise a games night, throw a frisbee, shoot some hoops,<br />

put on a puppet show, create with play dough, dance in the<br />

dark. Invite colleagues, family and friends to play along with<br />

you. Laugh until there is no sound. Live with empathy and<br />

nurture the child within. Play.<br />

“A person’s maturity consists in having found again the<br />

seriousness one had as a child, at play.” - Friedrich Nietzsche.<br />

Humans have always imagined, dreamed and visualised while<br />

hoping for good things to come in their future. In prehistoric<br />

times, researchers believe that some cave paintings represent<br />

hopeful visions of impending successful hunts that would<br />

produce an abundance of food for their tribe. So, with a long<br />

history of mankind recording dreams and goals in the form of<br />

pictures, how do we, in <strong>2019</strong>, imagine and visualise our own<br />

life dreams in a tangible and focused way?<br />

A vision board is a tool used to help clarify goals, increase<br />

self-awareness and communicate our wishes to other people<br />

in our lives. Some suggestions to include in your vision<br />

board are career, values, health, end of life, family, holidays,<br />

community, home decorating, your best life, meditation and<br />

learning goals.<br />

To begin your vision board, it can be helpful to daydream or<br />

meditate the things you want to be, do or have in all areas<br />

of your life. The more specific you can be, the better. Play<br />

some music, burn incense or light some candles. This can<br />

help you feel comfortable and relaxed and really allow your<br />

visualisations to start flowing. If you are doing any journaling<br />

or lists, try to handwrite them to create more energy between<br />

you and your dreams.<br />

The material you will need for your vision board will vary<br />

depending on how you would like yours to develop. Many<br />

people like to develop their vision boards into their own style.<br />

You can use coloured cardboard, corkboard, pinboard, an<br />

art workbook or even a notebook; there is no limit to this.<br />

Pictures and words for your vision board can be found in<br />

glossy magazines. Op shops often have cheap bundles, or<br />

perhaps you can collect them from family and friends. It can<br />

be quite relaxing to schedule a few hours for yourself, make<br />

a cup of tea and flick through magazines until you find what<br />

you are looking for. If this is not appealing to you, get online<br />

and search on the internet for those amazing dreams and<br />

inspirations you want in your life. Some people like to draw or<br />

paint their pictures first, use photographs or even create their<br />

own graphics online using Canva. Find pictures and words<br />

that conjure the feeling of wellbeing.<br />

As you look at your pictures, you may start to imagine what<br />

your finished board will look like. Some people like to glue or<br />

tape as they go, others prefer to lay out all their pictures and<br />

words and do the sticking down at the very end. There is no<br />

right or wrong way, the choice is yours to explore what feels<br />

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

be interrupted. Ensure you have all your supplies ready and<br />

continue playing your music, burning candles or incense. This<br />

is your special time and space to do what feels right for you.<br />

If you want a more contemporary vision board, there are free<br />

and low-cost apps available online including Pinterest where<br />

you can design, change things around and keep your vision<br />

board on your computer or iPad.<br />

Now that your board has been created, it is important<br />

to keep it in an area that you see every day.<br />

Perhaps in your bedroom as you wake up or by the front<br />

door as you leave the house. Also spend 10 minutes at<br />

least once a week to sit quietly and really look at your<br />

pictures and words on your board to revisit the feelings<br />

of wellbeing and relaxation that you had when you were<br />

completing it.<br />

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Recently <strong>MSWA</strong> ran a successful social media campaign to<br />

promote Smart Eating Week and provide our Members with<br />

some tips on healthy eating.<br />

What is Smart Eating Week?<br />

Smart Eating Week ran from 11 to 17 February and focused<br />

on raising community awareness of health and nutrition via<br />

education by Accredited Practicing Dietitians (APD). This<br />

year’s focus promoted how an APD can help improve your<br />

health, and advocating for a new National Nutrition Policy in<br />

Australia, which hasn’t been updated in over 26 years!<br />

Having a healthy, well-balanced diet plays an important role<br />

in overall health and in reducing your risk of chronic diseases<br />

such as diabetes and heart disease. The dietitians at <strong>MSWA</strong><br />

have prepared some tips for eating smarter this week:<br />

1. Start your day with food<br />

Begin your day with breakfast to improve concentration and<br />

keep energy levels stable throughout the day.<br />

2. Plan ahead<br />

Plan out your meals for the week and shop in advance to<br />

achieve a balanced diet and avoid impulse purchases and<br />

last-minute unhealthy meals.<br />

3. Choose healthy fats<br />

Unsaturated fats from foods like nuts, seeds, avocado and<br />

vegetable oil (like olive oil) are beneficial in small amounts as<br />

part of a healthy diet.<br />

4. Eat mindfully<br />

Increase enjoyment and awareness of your meal/snack. Limit<br />

distractions at meal times, chew food well and pay attention<br />

to how full you feel. Stop eating once you feel satisfied, even<br />

if your plate isn’t empty. You can keep the leftovers for the<br />

next meal.<br />

5. It’s all about balance<br />

Choose whole foods first. Limit processed foods, choose<br />

mostly plant foods and eat a variety of food from the five food<br />

groups for optimal health:<br />

• Vegetables<br />

• Fruit<br />

• Meat and alternatives<br />

• Grain foods<br />

• Dairy and alternatives<br />

6. Opt for Omega 3s<br />

Omega 3s are fatty acids that have been shown to help<br />

reduce inflammation in the body. The best sources of Omega<br />

3s are fish, fish oil, cod liver oil and other seafood, but you<br />

can also find them in plant foods such as flaxseed, walnuts,<br />

chia, pecans and canola/flaxseed/soybean oils.<br />

7. Limit processed foods<br />

A lower intake of highly processed foods and higher intake of<br />

whole foods and plant foods has been associated with lower<br />

levels of inflammation in the body.<br />

8. Eat a rainbow of fruits and vegetables<br />

Choose a range of different coloured fruits and vegetables<br />

to fill up on healthy fibre, get a range of vitamins and<br />

minerals, boost gut health, manage weight and reduce<br />

chronic disease risk.<br />

9. Be alcohol aware<br />

Limiting the amount of alcohol that you drink can help with<br />

weight management, reducing your risk of chronic diseases<br />

and keeping levels of cholesterol and triglycerides in your<br />

blood in check. Aim for no more than two standard drinks<br />

per day and try to have at least two alcohol-free days during<br />

the week.<br />

10. Catch up for a cook-up<br />

Cooking at home means that you are in control of what is<br />

going into your food. Try some new recipes and swap tips with<br />

friends to improve your skills and confidence in the kitchen.<br />

If you’re interested in speaking with the <strong>MSWA</strong> Dietitians<br />

call 9365 4888.<br />

RECIPE: Tasty Stuffed Sweet Potatoes<br />

Prep: 10 min Cook: 25 min Serves: 4<br />

Ingredients:<br />

• 2 large sweet potatoes<br />

• 1 spray of olive oil<br />

• ½ onion, chopped<br />

• 2 cloves garlic, minced<br />

• ½ cup quinoa (could be substituted for couscous or rice)<br />

• ½ tsp reduced-salt vegetable stock<br />

• 1 cup fresh OR frozen spinach<br />

• ¼ cup almonds<br />

• 1 tbs sultanas<br />

• ¼ cup reduced-fat feta cheese/cheddar/parmesan<br />

• 1 can (400g) chickpeas (rinsed and drained well)<br />

• Pepper to taste<br />


Method:<br />

1. Preheat oven to 200 degrees (180 fan forced) and line an<br />

oven tray with baking paper.<br />

2. Wash the sweet potatoes, slice in half lengthways and<br />

prick all over with a fork. Microwave for 6 minutes on high,<br />

flip over half way. Put sweet potato in the oven and bake<br />

for 20 minutes, flipping it over half way through.<br />

3. While the sweet potato is cooking, heat the oil in a frypan<br />

over a medium heat. Add onion and cook for about 5<br />

minutes, till soft. Add garlic and chickpeas and cook for<br />

another 2 minutes. Add the spinach and cook till soft.<br />

4. Cook the quinoa according to packet instructions, adding<br />

the vegetable stock powder to the water.<br />

5. Add the cooked quinoa, almonds, cheese and sultanas to<br />

the onion mixture, stir and season with pepper.<br />

6. Use a fork to scratch and mash the top of the sweet potato,<br />

then top each one with half the filling.<br />

(Recipe adapted from Live Lighter)<br />

https://livelighter.com.au/Recipe/522/stuffed-sweetpotato-3-2-1<br />



As part of my duties as the WA Advocate for MSA I travelled<br />

to Canberra for our annual meeting with MSA management,<br />

politicians, and my fellow advocacy colleagues from<br />

around Australia.<br />

The aim of our meeting was to seek election commitments<br />

from all sides of Parliament about our road map for people<br />

living with MS and other neurological conditions. There are<br />

three roadmaps created by MSA as part of their strategic<br />

planning; they seek to defeat MS, to support people with MS<br />

living with disability; and to support people ageing with MS.<br />

We held a ‘Parliamentary Friends of MS’ meeting in Parliament<br />

House with many MPs and Senators invited to attend.<br />

Our huge coup was to have the Prime Minister Mr Scott<br />

Morrison, not only be there but to officially open our meeting!<br />

To have such support is a testament to all the hard work MSA<br />

Advocates do behind the scenes. I am proud to say I am part<br />

of such a dedicated bunch of people.<br />

You can access a copy of that road map and the nine points<br />

we hope to have all parliamentarians embrace, whoever wins<br />

at the election, at msaustralia.org.au<br />

The photo is with Prime Minister Scott Morrison and some of<br />

the other MSA Advocates from states around Australia.<br />

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<strong>2019</strong> CAMPS<br />



COME FROM..?<br />


Venues are booked and the dates are fixed! I am so excited<br />

and looking forward to seeing our regular Members and<br />

hoping to get a few newcomers at our retreats this year.<br />

Here are the dates and venues for our carers’ retreats and<br />

Member getaways:<br />

1. Carers’ retreat at Rottnest Island Monday,<br />

29 April to Thursday, 2 May <strong>2019</strong><br />

This year our first carers’ retreat is at my favourite place.<br />

Superior ocean view bungalows, dining out at the best<br />

restaurants, fun indoor and outdoor activities – a few things<br />

to look forward to. Feel free to contact me if you are a family<br />

carer and want to enjoy this fantastic retreat. I encourage our<br />

Members to convince their loved ones to attend these retreats<br />

as a little treat on your behalf, I assure you they will be well<br />

looked after.<br />

2. Members’ getaway Guilderton Monday,<br />

27 May to Thursday, 30 May <strong>2019</strong><br />

The first Members’ getaway for the year is organised at Tuppin<br />

house in Guilderton. Guilderton is a nature-based tourist<br />

town, which lies approximately 100km north of Perth. With<br />

the stunning views of Moore river from the accommodation,<br />

it makes a perfect venue for our Members with only one hour<br />

15 minutes’ drive from Perth. If you have not attended Moore<br />

River camp before, give it a go this year. You will be amazed<br />

to see how much fun we have on these getaways.<br />

3. Carers’ retreat at Kilmolee at Safety Bay<br />

Group 1 – Monday, 19 August to<br />

Thursday, 22 August <strong>2019</strong><br />

Group 2 – Monday, 26 August to<br />

Thursday, 29 August <strong>2019</strong><br />

This retreat is for our family carers who simply want to relax<br />

in a very peaceful setup. Kilmolee offers spectacular ocean<br />

views, splendid sunrises, glorious sunsets, beach walks and<br />

amazing wildlife that will ensure your stay is a unique and<br />

memorable one. In total, nine ensuite are rooms are booked<br />

for each group and all meals are catered by a professional<br />

cook. Activities are organised after consultation with the<br />

participants so that we can structure the retreat according to<br />

the interests and comfort of our family carers.<br />

4. Members’ getaway at Woodman Point<br />

Monday, 2 September to Thursday, 5 September <strong>2019</strong><br />

This year we are back to Woodman Point for our second<br />

Members’ getaway. I am hoping that you can join us this year<br />

if you missed out on Rottnest camp last year due to limited<br />

accessibility. If you are interested in art and craft, archery,<br />

beach activities, quiz nights, and lots of fun activities and<br />

competitions, this is the getaway you don’t want to miss. As<br />

it is so close to Perth you are welcome to join us for the day<br />

activities if you like the comfort of your bed to sleep at night.<br />

5. Family camp at Woodman Point Monday,<br />

7 October to Thursday, 10 October <strong>2019</strong><br />

For Members with primary school aged children, this is the<br />

camp where you can enjoy some quality time with your family.<br />

The Department of Sports and Recreation organise activities<br />

such as archery, flying fox, rock climbing, high ropes, beach<br />

activities for children. Parents are welcome to attend and we<br />

also run structured indoor activities.<br />

All families get their own room with bunk beds and most of<br />

the rooms have enough lower bunks for adults and younger<br />

children. Feel free to contact me for further information.<br />

6. Southwest Members’ Getaway Denmark<br />

Monday, 28 October to Thursday, 31 October <strong>2019</strong><br />

For our Members in the southwest we have a special getaway<br />

for you. The Cove in Denmark offers open plan building with<br />

a 25-seater table and a large open fire. Accessible bathrooms<br />

and toilets and flexibility in sleeping arrangements in the<br />

charm of the A-Frame. Meals catered by award winning<br />

Mrs Jones café, outings, dining out, indoor activities are few<br />

of the amazing things to look forward to if you are thinking<br />

about attending.<br />

We would like to acknowledge the support of Lotterywest;<br />

their funding allows <strong>MSWA</strong> to provide these camps to<br />

our Members and their carers at minimal cost.<br />

For further information and to register your interest<br />

please contact: Sumit Sandhu on 9365 4843 or email<br />

sumit.sandhu@mswa.org.au<br />

I’m writing this from a carer’s perspective. Although I don’t have<br />

MS myself I’ve learned to live with it all the same. I manage<br />

that better some days than others, but for the most part I do<br />

okay. I have other interests, and even though I’m 63 years old I<br />

stay active. Our story is not unique, but then again, MS affects<br />

everyone in a unique way, so I guess I might be wrong about<br />

that. Still, ever since my wife Kathy found herself on the wrong<br />

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

unwanted guest that comes and goes whenever it pleases.<br />

It all began with a general feeling Kathy had that something<br />

wasn’t quite right. For several years’ doctors said the ‘trapped<br />

nerve’ in her fingers, the two separate episodes of Bell’s<br />

Palsy, and my personal favourite, ‘burning the candle at both<br />

ends’, didn’t seem impossible. Except the ‘burning candle’<br />

explanation ... we didn’t own any candles! Needless to say,<br />

the initial indifference we encountered did little to help Kathy,<br />

herself a nurse, deal with the early signs of MS. She did have<br />

a couple of CT scans, but they proved inconclusive.<br />

Time passed and Kathy learned to live with the increasing<br />

number of symptoms she was experiencing, but as they had<br />

no collective name at this point MS wasn’t a concern for us.<br />

Not until the day I found her slumped over, head down, her<br />

left arm lying awkwardly on her lap, a profound weakness<br />

down her left side, slurred speech, and an inability to select<br />

the appropriate word. Kathy was presenting for all the world<br />

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

the local hospital.<br />

The neurologist in Emergency wasn’t convinced it was a stroke<br />

but arranged for an MRI just to be certain. The result of that<br />

scan came as a shock; 32 separate lesions in Kathy’s brain.<br />

Shortly afterwards a consultant introduced us to our unwanted<br />

guest by name ... multiple sclerosis. The diagnosis, although<br />

upsetting, fearful even, brought us both some level of relief; now<br />

at least we had a name for what was happening, we knew who<br />

our unwanted guest was and could tackle our intruder head on.<br />

Kathy’s been living with MS for over 20 years now, and it’s<br />

been a difficult path to walk at times. I often ask myself if I<br />

could maintain her happy disposition if I’d had a continuous (7<br />

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

to terms with stopping the work I loved because of short-term<br />

memory loss, fatigue, and increased cognitive dysfunction. I<br />

wonder how I’d cope with looking okay on the outside while<br />

crumbling away on the inside, and having to listen to people<br />

tell me over and over again how well I looked. I doubt I’d<br />

handle the constant numbness in my fingers and feet very<br />

well either, or the double incontinence, the years of injections<br />

and infusions, the shingles, or feeling like my energy was<br />

draining away every afternoon, whether I was having a good<br />

day or not.<br />

Kathy’s okay with me writing about this, if she wasn’t I<br />

wouldn’t do it. But her courage of late has been truly amazing.<br />

At the beginning of October 2018, Kathy had a call back<br />

following her annual mammogram and this led to a number of<br />

biopsies. The following day she received the news no woman<br />

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

just twelve months earlier so this came completely out of the<br />

blue; three tumours in her left breast, each one aggressive<br />

and invasive, the only option surgery. That news pushed our<br />

worries of living with MS completely off the table.<br />

The following week we met with the surgeon. The mastectomy<br />

took place three days later. Unfortunately, cancer cells were<br />

also found in one of the lymph nodes removed during the<br />

surgery, and that meant most of the nodes had to go too. Kathy<br />

has made a remarkable recovery from her surgery. She’s still<br />

coming to terms with the changes to her body, but she’s<br />

focused on her new challenge; six months of chemotherapy<br />

with radiation treatment to follow. She’s going to lose her<br />

beautiful long hair, but she’s discovered she can donate it to a<br />

charity making wigs for burns victims and people with cancer;<br />

a thin silver lining to an otherwise miserably dark cloud.<br />

Kathy is strong in a quiet way, she’s accepting in an intelligent<br />

way, and she is determined to get past this latest intrusion<br />

into her otherwise happy life. By mid-August, we should be<br />

able to say, “Kathy had cancer” and not, “Kathy has cancer”,<br />

that’s the plan. Life often knocks you down, but it’s what<br />

happens next that matters ... stay down or get back up? Kathy<br />

has always chosen to stand.<br />

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

I don’t just care for her, I love her, completely, unreservedly.<br />

Her daily display of courage is something I can only aspire to.<br />

<strong>MSWA</strong> have been incredibly supportive, not just with Kathy, but<br />

with me too. I’ve taken the opportunity to talk with a counsellor<br />

on a number of occasions and understand that <strong>MSWA</strong> is there<br />

for me too. With ongoing support life looks good for Kathy and<br />

me regardless of what may come in the future.<br />

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

but it is always an honour. I’m not sure where Kathy’s<br />

courage comes from, but it’s been a rare privilege to<br />

bear witness to it every day.<br />

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WASTE NOT,<br />

WANT NOT<br />

ROS HARMAN, <strong>MSWA</strong> MEMBER<br />

Speech Pathologists are known for working with individuals<br />

who have communication difficulties, but did you know we<br />

also assess and manage swallowing difficulties?<br />

A swallowing difficulty is any problem with drinking, chewing,<br />

eating, taking medication, or protecting the lungs from food and<br />

drink ‘going down the wrong way’. These difficulties can occur<br />

at any stage of life and may be short or long term. Depending<br />

on the underlying cause or the progression of disease, some<br />

swallowing difficulties can persist and worsen over time.<br />

With assessment and treatment from a speech pathologist, a<br />

swallowing difficulty may be managed, reduced or resolved.<br />

There are many types of therapies and strategies to manage<br />

swallowing difficulties including modifying diet. These<br />

modifications help to make chewing and swallowing both<br />

easier and safer for our Members.<br />

The current Australian National Standards for Texture-<br />

Modified Foods and Thickened Fluids was released over ten<br />

years ago in 2007. With the research frequently evolving<br />

around the assessment and management of swallowing<br />

difficulties, it was decided in December 2016 that here in<br />

Australia, we would be changing our current practices to align<br />

us with countries all over the world.<br />

The International Dysphagia Diet Standardisation Initiative<br />

(IDDSI) is a global standard for terminology and definitions<br />

to describe texture-modified foods and thickened fluids for<br />

individuals of all ages with swallowing difficulties.<br />

“IDDSI is person-focused rather than profession-centred<br />

approach with global terminology suitable for all cultures<br />

and care settings,” said Dr Cichero, an Australian Speech<br />

Pathologist and a co-chair for IDDSI.<br />

The IDDSI framework was developed by a group of health<br />

professionals who volunteered from all over the world<br />

including specialists in speech pathology, nutrition, dietetics,<br />

medicine, occupational therapy, nursing and engineering.<br />

So far, the <strong>MSWA</strong> Speech Pathology team have begun<br />

preparing for the adoption of IDDSI through attending<br />

workshops, providing IDDSI training to <strong>MSWA</strong> staff and have<br />

formed their own IDDSI committee. This committee will be<br />

involved in managing the distribution of information as it is<br />

made available. IDDSI is set to roll out Australia-wide in May<br />

of <strong>2019</strong>. This means you may begin to see some new posters<br />

around Centres and hear care support workers using different<br />

terminology in relation to texture-modified diets and fluids.<br />

If you wish to find out more about IDDSI, please visit<br />

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

app on your smartphone. Alternatively, if you have any<br />

queries, please don’t hesitate to contact the Speech<br />

Pathologist team at <strong>MSWA</strong> for more information, through<br />

reception on 9365 4888.<br />

Speech Pathology Australia annually aims to educate and<br />

advocate for those who have a swallowing difficulty, by the<br />

promotion of ‘Swallowing Awareness Day’. This year, it was<br />

held on Wednesday, 13 March. The <strong>MSWA</strong> Speech Pathology<br />

team invited all Centre staff for an afternoon tea to inform<br />

and provide continued education about the implications of a<br />

swallowing difficulty for our Members.<br />

Do you often experience:<br />

• Coughing while eating or drinking?<br />

• Trouble swallowing tablets?<br />

• Worry about attending social gatherings where food<br />

is offered?<br />

• Difficulty in feeding yourself?<br />

• Difficulty swallowing your own saliva?<br />

If any of these apply to you, you may require a swallowing<br />

assessment. Please contact Speech Pathology at <strong>MSWA</strong><br />

on 9365 4888.<br />

I want to be good, but sometimes I’m not.<br />

I want to eat healthily, and usually I do, but sometimes I buy a<br />

chocolate bar and eat the whole thing by myself in one sitting.<br />

I want to exercise regularly and stay strong, but sometimes<br />

I spend all day in front of my computer, only moving to feed<br />

myself or go to the bathroom.<br />

I want to be a famous novelist like Tim Winton, but sometimes<br />

I play games on my computer obsessively all day and don’t<br />

write a word.<br />

In the end, these things don’t affect anyone except me.<br />

They don’t really matter. But what does matter is what<br />

affects others.<br />

I want to live ethically and not waste the world’s resources,<br />

but sometimes I waste things and throw plastic away and it<br />

breaks my heart.<br />

I know I can do better.<br />

Like many people, I have been shocked and upset by the<br />

terrible images we see in the news of plastic pollution in<br />

our oceans. I hate to see the pictures of birds, turtles and<br />

other marine life dead or dying because of plastic debris<br />

which may well have come from my own kitchen. I care<br />

about our environment and I love all creatures. (Note: I don’t<br />

actually love cockroaches, but I accept their right to be here.)<br />

It is horrible to see the dreadful impact humans have had on<br />

the earth.<br />

When I was a young child, plastic was not as big a part of my<br />

life as it is now. Most of the containers in our kitchen were<br />

made of china, glass or metal. My mother eventually bought<br />

a few pieces of Tupperware which she looked after carefully.<br />

Four years ago when she moved into an aged care facility<br />

and her house was sold, my sister found some of those pink<br />

and pale green plastic containers still in her cupboard, and<br />

still in usable condition.<br />

I remember when cling wrap first appeared in our house. My<br />

mother used it sparingly and carefully. For a while she even<br />

washed each piece after use and laid it to dry so it could be<br />

reused. That seems funny now, but this was the era when<br />

groceries came home in brown paper bags, and sandwiches<br />

were wrapped in wax paper. Food scraps were fed to the<br />

chooks, or dug into the garden. Any leftover rubbish was<br />

wrapped in newspaper to be put in the (metal) rubbish bin.<br />

My parents were slow to change the habits they had learnt<br />

from childhoods spent in poorer and more frugal times.<br />

I, however, embraced the wonders of plastic with no thought<br />

to what happened to it after I discarded it. When I threw<br />

things out, I forgot about them. I bought plastic bags to line<br />

my bins, and different ones to freeze food in and different<br />

ones again as sandwich bags. When I emptied my cereal<br />

packet I threw the plastic bag in the bin. I wrapped things in<br />

cling wrap and then threw it away. It is only in the last couple<br />

of years that I have come face to face with the truth about<br />

plastic and taken a look at myself. Seeing terrible pictures of<br />

oceans with floating plastic, turtles and sea birds strangled by<br />

my throwaways brought me up short. It wasn’t enough to be<br />

remotely horrified. I needed to take my short-term glasses off<br />

and face the truth. I am doing this. I am polluting this ocean. I<br />

am killing these animals.<br />

If the major supermarkets and even the state government get<br />

it by banning single use plastic bags, then I should too.<br />

I’ve made changes. I don’t buy plastic anymore. Any that<br />

comes into my house is stored to be reused, sometimes as a<br />

rubbish bag, and that worries me. Increasingly I am wrapping<br />

scraps in newspaper instead. When I shop, I put my fruit and<br />

vegetables in cloth shopping bags. I would love to have chooks<br />

or a compost heap, but I’m not sure how I would manage<br />

either on my own. I wish one of my neighbours had them so<br />

I could give my green waste to them. In the meantime I still<br />

have a small amount of rubbish to put in my bin every week.<br />

Our society is still in the process of working out how to live<br />

without plastic. I want to live according to my beliefs and<br />

ethics, but there are times when I struggle. Living with MS<br />

and using a wheelchair, I find it difficult sometimes. Plastic<br />

can be just so darn convenient and sometimes helps make<br />

my life easier in little ways. I have to weigh up my desire<br />

to decrease my toxic impact on the environment against my<br />

physical ability, and it saddens me when I have to compromise.<br />

Slowly, however, I will keep making what changes I can.<br />

And maybe one day I’ll meet someone who will share my<br />

desire to keep chooks.<br />

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AWARD<br />

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



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

The John Studdy Award is Multiple Sclerosis Australia’s<br />

most prestigious Award, given annually in recognition of<br />

outstanding and selfless provision of meritorious service to<br />

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

level, preferably over a period in excess of 10 years.<br />

The standard of this service is to be of such high status that<br />

‘the nominee has made, or is making, a tangible difference’<br />

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

or carers.<br />

We are delighted to announce that Board Member,<br />

<strong>Bulletin</strong> contributor, and <strong>MSWA</strong> Member Ros Harman<br />

was one of the 2018 recipients.<br />

Ros Harman was first diagnosed with MS at the age of 26.<br />

Her early career included being a school teacher, and a<br />

Human Resources and Training Manager for a medium-sized<br />

Our latest accommodation facility at Butler has arrived!<br />

What was a block of sandy land in the early days, is now<br />

a wonderful <strong>MSWA</strong> Services Centre and Supported<br />

Accommodation facility.<br />

The 10-unit accommodation facility, with self-contained units,<br />

their own courtyards and three communal areas including<br />

a theatre room, lounge, dining rooms and courtyards is<br />

amazing. The décor is beautiful, and it really feels like a home<br />

for the new residents.<br />

Our accommodation provides a home for residents living<br />

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

onsite care and provide supports and security whilst<br />

promoting independence and choice. Thanks to our cooks the<br />

food is amazing!<br />

I am new to <strong>MSWA</strong> and it has given me great pleasure hiring<br />

a team of over 25 professional care support workers. This<br />

amazing new accommodation with a modern ‘Hamptons’ look<br />

presents supported living in a stylish yet practical way, and<br />

it’s truly refreshing.<br />

company. Many years ago, Ros initiated and pioneered a<br />

parents’ support group, and is widely felt to be an inspirational<br />

role model for people with MS and for women in particular.<br />

She has served on the <strong>MSWA</strong> Board since 2004, and is an<br />

ambassador for <strong>MSWA</strong>, representing the organisation on<br />

all forms of electronic media and is an active ambassador<br />

within political circles. Ros is Vice President of the Board,<br />

Chair of Member (Client) Services Committee and Chair of<br />

the Research Committee. Her stewardship has led <strong>MSWA</strong>’s<br />

position as the leading funder of MS research. Her past<br />

roles within <strong>MSWA</strong> have also included Editor of the <strong>Bulletin</strong><br />

magazine and director roles that included fundraising.<br />

Ros is a regular public speaker at events and functions,<br />

promoting the involvement and participation of people<br />

with disabilities.<br />


NOW OPEN<br />


Leading the Butler team and welcoming and supporting our<br />

residents and their families from their first day arriving at<br />

Butler Accommodation, has been a pleasure. The many smiles,<br />

laughter and community spirit that has been built from the<br />

ground up is amazing. I look forward to sharing further news<br />

with you in the future and bringing you along on our journey.<br />

I would like to thank everyone at <strong>MSWA</strong>; all the staff,<br />

the various teams and departments and the wonderful<br />

residents that have made this all possible.<br />

In 2005, Kate Gild was diagnosed with multiple sclerosis (MS)<br />

when she was 33 years of age. She was living in London at<br />

the time and home in Perth on holiday visiting family, when<br />

she started experiencing nerve pain in her wrist. Kate thought<br />

it was carpal tunnel syndrome, but an MRI revealed it was MS.<br />

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

my diagnosis, I realised I had been living with some symptoms<br />

for a while. I would fall over for no reason or find I could not<br />

walk properly which I had put down to being clumsy. I also<br />

had tingling in my right hand that I thought was carpal tunnel<br />

syndrome, which my mum and grandma both had. I was very<br />

scared,” Kate said.<br />

Now in an electric wheelchair, life has been a roller coaster<br />

for Kate and her family, but she considers herself fortunate<br />

to have called <strong>MSWA</strong> Treendale Gardens home for the last<br />

three years. The facility just outside of Bunbury in the State’s<br />

beautiful South West, provides high-support, state of the<br />

art accommodation and respite for people with neurological<br />

conditions. There, Kate accessed 24-hour care and nursing,<br />

and allied health including physiotherapy and Outreach at the<br />

Community and Health Services Centre in Bunbury.<br />

However, the 46-year-old wanted to be closer to her family<br />

and was very excited when she discovered that <strong>MSWA</strong> was<br />

building an $8 million high-support accommodation and<br />

services facility in WA’s northern suburbs of Butler.<br />

Butler Centre will be a one-stop-shop for people living with<br />

MS and all neurological conditions, offering a range of<br />

services such as physiotherapy, counselling, nursing, and<br />

peer group sessions, and will be a base for staff co-ordinating<br />

home support.<br />

The adjoining development provides high-support<br />

accommodation facility equipped with 10 fully self-contained<br />

units for people living with neurological conditions. As soon<br />

as Kate found out about the development, she put her name<br />

down to apply for one of the units.<br />

“I'm so excited to be living in the Butler community. I had<br />

been living in Treendale for almost three years and my life<br />

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

I’ve missed them so much,” said Kate.<br />

The facility will provide permanent accommodation options<br />

for people who can no longer stay in their own homes. They<br />

offer an age appropriate option for younger people who would<br />

otherwise find themselves entering aged care facilities, due<br />

to their high care needs.<br />

Kate is looking forward to the simple things like having friends<br />

over for a coffee or going to her parents’ house which has<br />

proved difficult whilst living regionally.<br />

“The onsite care and support will allow me to lead a fulfilling<br />

and independent life. The train station is down the road and<br />

there is a services hub next door. I can take myself to my<br />

physiotherapy sessions or go grocery shopping. I can’t begin<br />

to tell you what that means to me,” added Kate.<br />

“<strong>MSWA</strong> is thrilled to be opening a purpose-built centre for<br />

people like Kate who are living with neurological conditions.<br />

Residents will have their own self-contained unit and shared<br />

communal area where they can socialise via a high-support<br />

accommodation facility which includes onsite 24-hour, 7-day<br />

a week care for younger people who may have otherwise had<br />

to face the very real prospect of living in an aged care facility,”<br />

<strong>MSWA</strong> CEO, Marcus Stafford AM said.<br />

“These developments are made possible by the ongoing<br />

support of <strong>MSWA</strong> by generous Western Australians who buy<br />

tickets in our Mega Home Lotteries, take part in events like<br />

<strong>MSWA</strong> Ocean Ride and make bequests and donations. We<br />

thank all of our supporters very much.”<br />

Mr Stafford added that the Butler Centre was part of the<br />

organisation’s long-term, strategic growth plan which will<br />

continue to develop a network of facilities in regional areas<br />

such as Albany.<br />

“We’ve found that the number of people using our highsupport<br />

accommodation facilities has grown and I<br />

predict that we’ll see the same thing happen in Butler.<br />

To manage the ongoing demand over the coming years<br />

we have a major building program planned, both in the<br />

metropolitan area and regional Western Australia. As<br />

well as bricks and mortar we also want to continually<br />

increase the services we provide to our customers and<br />

the number of hours’ worth of services that we provide.”<br />

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<strong>MSWA</strong> Ocean Ride – Members Ride 2018<br />

Did you know that 80 <strong>MSWA</strong> Members and Clients participated<br />

in the <strong>MSWA</strong> Ocean Ride – Members Ride last year? The ride<br />

is a cycling challenge completed on a stationary bike over an<br />

eight-week period, concluding the week of the actual event.<br />

Thank you to everyone who took part in the challenge and<br />

congratulations on raising over $10,000 to support people in<br />

WA living with MS and all neurological conditions.<br />

The <strong>2019</strong> <strong>MSWA</strong> Ocean Ride is coming up on Sunday,<br />

24 November. Register your interest on the website now<br />

to be the first to know about this year’s Members Ride!<br />

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

The Wilson Wonders who rode 309.44km.<br />

<strong>MSWA</strong> Albany Ride <strong>2019</strong><br />

This unique cycling event was another huge success thanks<br />

to the generous support of the local Albany community. 180<br />

riders took to the streets of Albany on Saturday, 23 February<br />

to ride either 10km, 40km or 80km around the scenic City,<br />

exploring some of its amazing sights. Over $18,000 has been<br />

raised in <strong>2019</strong> so far, to help people in the Great Southern<br />

region living with MS and all neurological conditions.<br />

Register your interest on our website now, and you’ll be<br />

one of the first to hear when the 2020 date is announced!<br />

www.<strong>MSWA</strong>AlbanyRide.org.au<br />

<strong>MSWA</strong> Albany Swim <strong>2019</strong><br />

The <strong>2019</strong> event was the eighth annual <strong>MSWA</strong> Albany Swim<br />

and was even bigger and better than 2018, attracting 130<br />

participants and raising over $30,000. All funds raised goes<br />

to supporting people living with MS and all neurological<br />

conditions in the Great Southern Region.<br />

Thank you to all of our dedicated supporters, well done.<br />

Entertainment Book<br />

<strong>MSWA</strong> would like to extend their sincere thanks and<br />

appreciation to everyone who purchased a 2018-<strong>2019</strong><br />

Entertainment Book Membership in support of <strong>MSWA</strong>.<br />

By purchasing a membership through <strong>MSWA</strong>, you have<br />

helped raise over $3,000 for people in WA living with MS and<br />

all neurological conditions.<br />

Looking to update your Membership for <strong>2019</strong>-<br />

2020? Support <strong>MSWA</strong> with your purchase here:<br />

http://bit.ly/2TGAvYA<br />




Rottnest Channel Swim <strong>2019</strong><br />

The Rottnest Channel Swim couldn’t have asked for a better<br />

day on Saturday, 23 February <strong>2019</strong>. <strong>MSWA</strong> had two teams<br />

swimming on our behalf as part of ‘Team <strong>MSWA</strong>’, both of<br />

whom had a personal connection to the organisation. The two<br />

teams jointly raised over $4,500, which is a fantastic effort!<br />

A special mention to Lauren, Ben, Johnathan and Michael<br />

(pictured) who raised over $3,000 themselves in support<br />

of Lauren’s mum, who is living with MS. The funds raised<br />

through the event will help <strong>MSWA</strong> make a real difference to<br />

people in WA living with MS and all neurological conditions.<br />

If you’re interested in getting involved in another<br />

Team <strong>MSWA</strong> event in <strong>2019</strong>, visit our website for more<br />

information! www.Team<strong>MSWA</strong>.org.au<br />

Since 2016 our <strong>MSWA</strong> event participants have had the option<br />

to allocate the funds they raise to support people living with<br />

other neurological conditions here in WA.<br />

This has resulted in <strong>MSWA</strong> having over $310,000 to spend on<br />

much needed equipment for patients with Stroke, Acquired<br />

Brain Injury, Parkinson’s Disease, Motor Neurone Disease and<br />

Huntington’s Disease, on the wards in the major hospitals,<br />

attending Outpatient services, rehabilitation centres and<br />

in their homes. Services supported with equipment have<br />

included Osborne Park Hospital Parkinson’s Service, Sir<br />

Charles Gairdner Hospital Neurology Ward and equipment<br />

loan pool, Fiona Stanley Hospital Head Injury Rehabilitation<br />

Ward and the Neurosciences Unit.<br />

Donations have also funded much needed loan equipment for<br />

people with MND as we replace old equipment, buy additional<br />

stock and we provide equipment to the Sleep Clinic at SCGH.<br />

These purchases are gifts that will keep giving as they benefit<br />

a greater number of patients over time.<br />

A huge thank you to those who donate this funding<br />

and to our Events team for the fantastic events they run<br />

each year.<br />

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NARELLE TAYLOR, <strong>MSWA</strong> MEMBER<br />

There have been some very hot summer days this year and<br />

they tell me that summer has now ended.<br />

My youngest daughter and her immediate family, moved to<br />

what we thought was idyllic, sub-tropical Queensland and I<br />

anticipated that we’d be told by them, tales of their having<br />

to combat heat. I would have been able to pass on all the<br />

heat avoidance tricks and great methods for cooling down<br />

that <strong>MSWA</strong> has told me about.<br />

When Bree’s first story from their new home in sunny subtropical<br />

Queensland, detailed a snake falling out of a tree onto<br />

her head, I ignored my horror and pragmatically dealt with the<br />

TV news reports from there, of fatal shark attacks instead. I<br />

suggested that they only swim in tiled pools. Breathless with<br />

worry, I admired photos of their new home and was then<br />

relieved to see on the map that the ‘uncontrolled bush fires’<br />

were likely to avoid them.<br />

I suppose the very next news of flooding rains had me happily<br />

deduce that it solved the problem of raging fires. Bree’s<br />

keep-fit running group would have had very-improved times<br />

if their running course, which goes along beside the river,<br />

had revealed a crocodile or two, washed upstream a little by<br />

the floodwater’s king tides. Then I remembered that snakes,<br />

having escaped from the raging sub-tropical bush fires and<br />

hiding under houses, were now submerged by floodwaters<br />

and would swim back to dry ground where former Western<br />

Australian families were enjoying their romantic new address.<br />

Oh grief!<br />

My ‘middle’ daughter and her family have moved back to their<br />

newly completed renovations here in Perth and are nearby<br />

so I’ve enjoyed a sleepover there on Christmas Eve and more<br />

recently, was thrilled to see Milla (my oldest grandchild)<br />

dressed for her high school formal. Her very much younger<br />

brother Alby, threaded dinosaurs through the spokes of my<br />

wheelchair and was seemingly very pleased with his efforts.<br />

Older brother Max is able to keep Alby in order, so I guess I<br />

have ‘might’ on my side. The back yard has concrete paths<br />

where Alby and Max can fine-tune their bike-riding skills.<br />

When Alby is biking like a boss, I suspect there’ll be less<br />

dinosaur threading done. Yay!<br />

Back in Queensland at the home of daughter three, my<br />

granddaughters Claire and Lucy now own guinea fowl which,<br />

as we all know, are just the best animals for dealing with<br />

snakes. Their mum Bree also bought both girls a kitten each,<br />

(to be sure, to be sure). The last item in this litany of tragedies<br />

that we’re compiling here was added when she told me of a<br />

hawk swooping down and taking one of the kittens up and<br />

away to wherever hawks take things. No doubt, the kitten will<br />

be replaced by another, hopefully more alert.<br />

My oldest daughter has just recently nursed her man through<br />

concussion and broken ribs that he acquired at work. Thank<br />

goodness each of my three girls is able to run their own<br />

households and all I have to do is worry. I’m not sure that<br />

I’m all that good at worrying because I’ve never altered an<br />

impending outcome. What will be, will be.<br />

The most recent release of news from the banana benders<br />

was under the headline ‘double homicide’. Investigative<br />

procedures by little Lucy have revealed that the dead python<br />

on the lawn was poisoned by the very dead cane toad beside<br />

it. Lucy attests that the snake regurgitated the dead cane<br />

toad because it realised it was poisonous, but it had already<br />

bitten the python. It was a truly riveting news item.<br />

I’m confident the new residents are going to be able<br />

to survive.<br />



Two of our long-term residents made the decision to move<br />

from Treendale Gardens to the new Butler supported<br />

accommodation facility, so they could be closer to family.<br />

Kate moved in with us back in 2015 and Di in 2016;<br />

both having spent some time in our respite house which they<br />

had enjoyed.<br />

Both ladies have been active Members of our Treendale<br />

community, enjoying communal activities in Treendale<br />

and accessing the community using social support funding<br />

organised through the fantastic South West Individual<br />

Options team.<br />



Residents at Fern River, especially those living in the units we<br />

have completed so far, are enjoying the refurbishments which<br />

are well under way.<br />

Upgrades have been made to modernise parts of the<br />

accommodation units as they are now over 20 years old.<br />

Work on several of the units has already been completed<br />

which includes a new bathroom and laundry, new flooring<br />

throughout and replacement of furniture and white goods.<br />

Residents are thrilled to have access to a functional, tasteful<br />

kitchen, and a modern bathroom modified to suit their needs<br />

and assist with promoting their level of independence.<br />


JOHN WALLACE, <strong>MSWA</strong> MEMBER<br />

Our cook, Rosemary, has a new volunteer to help whip up<br />

our delicious lunches. Welcome Carney and thanks for your<br />

time. Did we mention that Carney is Rosemary’s husband?<br />

What a team!!<br />

We said goodbye to a popular Member recently. Michelle has<br />

moved to new accommodation in Perth and will now join in<br />

Wilson’s activities. Michelle will be remembered for her bright<br />

rainbow colours and unicorn headbands. We’ll miss your smiles!<br />

A few Members have recently been to Treendale for respite,<br />

a very popular destination for our Members. Speaking of<br />

respite, the very popular carers’ camp to Rottnest will be<br />

happening shortly. Attendees always rave about this four-day<br />

break away.<br />

In February we had two most unusual visitors. The latest<br />

in mini robots. These clever little dancing characters are<br />

designed by Colleen and her husband to be used in care<br />

On 10 January Kate and Di organised a thank you lunch for<br />

the residents and staff of Treendale Gardens and the <strong>MSWA</strong><br />

Allied Health in the South West. They ordered in food from<br />

the famous local Farmers Market. The food was delicious,<br />

the company sparkling, and everyone there enjoyed the food<br />

and the chatter.<br />

We were sad to see them leave us but wished<br />

them well, knowing they will enjoy being closer to family<br />

and friends.<br />

Staff are excited to continue with the upgrades for all our<br />

residents, their families and staff to enjoy in the future.<br />

We have recently said farewell to two of our residents<br />

who moved to the new Butler facility to be closer to family<br />

and friends. However, we welcomed a new resident in<br />

February with another moving in shortly.<br />

centres and seniors’ centres to help keep residents moving<br />

and singing along. We all had a good laugh while we joined<br />

in their performance of ‘YMCA’, very clever; could it be that<br />

robots will soon be part of everyday life?<br />

Southside had eight tickets in the <strong>MSWA</strong> Mega Home Lottery.<br />

We were looking forward to receiving the keys to the new<br />

house but it was not meant to be.<br />

Our physios continue to keep us on our toes – figuratively<br />

speaking – with new equipment coming in regularly. Thanks<br />

Sharon, James, Kirstin and University student, Calvin, who is<br />

currently on work experience.<br />

An annual event popular with Members is our beach<br />

picnic held at Rockingham foreshore. A fun morning with<br />

games, massage and takeaway fish and chips for lunch!<br />

Let’s hope for good weather.<br />

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Take a break<br />

in the South West<br />

Treendale is only 20 minutes from Bunbury,<br />

located next to a small parkland with wheelchair<br />

friendly paths and a shopping centre nearby.<br />

<strong>MSWA</strong> Treendale is our 6-bedroom, 3-bathroom purpose built, accessible respite<br />

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

with MS.<br />

Located next to our respite home is our wonderful 3-bedroom family holiday unit<br />

where family can get away from the routines, whilst accessing support for their<br />

loved ones if needed. We may even be able to assist you with transportation.<br />

Funding to cover your stay may be available through the Commonwealth Carer<br />

Respite Program or through your DSC or NDIS individual packages. Speak with<br />

our friendly team to chat about your individual needs.<br />

For more information or to book your stay at<br />

Treendale Gardens, phone us on 9725 9994

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