MSWA Bulletin Summer 16

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

SUMMER 20<strong>16</strong><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, Manager: 9365 4809 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 />

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

maintain mobility and function. Our physiotherapists are experts in movement and function,<br />

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

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




Sue Shapland: 9365 4840<br />


Manager Community Care Programs,<br />

Gail Palmer: 9365 4851<br />

NDIS TEAM 1800 287 367<br />


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

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

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

Bunbury Outreach (Wed): 9791 2472<br />

Albany Outreach (Fri): 9841 6657<br />


9 Ramsay Street 9791 2472<br />


1/21 Cammilleri Street 9754 2320<br />


Manager, Chris Rush: 9385 9574<br />


Manager, Liz Stewart: 9356 2747<br />


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



Manager, Linda Kidd: 9725 9209<br />


If you would like to comment<br />

on anything you read in this<br />

<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 />

David Bugden, Sue Shapland, Ros Harman,<br />

Libby Cassidy, Sandra Wallace, Narelle Taylor,<br />

Leonie Wellington, Bhavna Jagtiani, 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 the<br />

Society’s staff, advisors, Directors or officers.<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<br />

and equipment.<br />

Sandra Wallace, Manager: 9365 4804 or OT Department: 9365 4888<br />

SPEECH PATHOLOGY Our Speech Pathologists provide a targeted service addressing<br />

swallowing difficulties of our Members and clients. Education is given to understand the<br />

associated risks, and strategies for safe swallowing are recommended. Information may be<br />

given for language and articulation difficulties.<br />

Jamaica Grantis, Speech Pathologist: 6454 3140<br />

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

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

gain understanding about your life. Attending counselling with our tertiary qualified<br />

practitioners enables opportunity for personal growth and exploration in a nonjudgemental<br />

environment. 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. They<br />

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

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

departments.<br />

Irene Gallagher, Senior Social Welfare Officer: 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 Disability<br />

Services Commission (DSC) and our own fundraising efforts. We manage both DSC and<br />

NDIS individually funded care packages.<br />

Contact us on 9365 4851 for more information.<br />

THE NDIS TEAM We provide a convenient and fast one stop shop to enable you to<br />

easily transition to the NDIS as it becomes available in your area. We help you determine<br />

whether you are eligible for assistance under the NDIS; we guide you through the application<br />

process and then we help you develop a comprehensive NDIS plan to maximize your<br />

entitlements.<br />

We support people with all neurological conditions.<br />

Mark Douglas, NDIS Operations Manager: 9365 4824<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 support<br />

networks.<br />

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

2 | <strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong>

Inside | <strong>Summer</strong> 20<strong>16</strong><br />

Letter from the Editor 4-5<br />

Christmas Closure and Contact Details 5<br />

From the desk of the CEO 6<br />

A message from the General Manager – Member Services 7<br />

Annual General Meeting 20<strong>16</strong> 8-9<br />

Round-up of research and other items of interest 10-11<br />

The NDIS goes from strength to strength! 12<br />

An update on the <strong>MSWA</strong> Funded WA Research Projects 13<br />

Living well with a new diagnosis of MS 14-15<br />

It’s time to reform your ideas about Pilates <strong>16</strong><br />

Assistive Technology 17<br />

Calendar of events 18<br />

Are you someone who cares? 19<br />

Anita’s story 20-21<br />

Employment Forum presented by Maurice Blackburn 22<br />

Equipment maintenance 22<br />

Health Awareness 23<br />

Centrelink Update on the Disability Support Pension 23<br />

Reunion, by Ros Harman 24<br />

That’s life with Narelle 25<br />

Attitudinal healing: Some New-Year resolutions 26<br />

Silence 26<br />

Fundraising Round Up 27<br />

> Mega Home Lottery – Big returns for Mr Biggins!<br />

> <strong>MSWA</strong> Ocean Ride 20<strong>16</strong><br />

Volunteering Update 28-29<br />

Robert Cridge –<br />

Albany Sportsman of the Year & Paralympian Contender 30<br />

Update on our proposed North Metro Services Hub<br />

& High Support Accommodation 30<br />

Embrace the Shake 31<br />

South West regional round up 32-33<br />

Wilson Outreach news 34<br />

Margaret Doody Respite House (MDH) News 34<br />

Southside News November 20<strong>16</strong> 34<br />

Rockingham Tuesday Outreach Group & Southside News 35<br />

Beechboro Outreach News 35<br />

Rome<br />

wasn’t seen<br />

in a day<br />

Fold, Pack, Travel<br />

1300 622 633<br />

www.scootersAus.com.au<br />

WH20241/<strong>MSWA</strong><br />

<strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong> | 3

Letter from the Editor<br />


In an unprecedented global effort to end progressive MS,<br />

the International Progressive MS Alliance has awarded<br />

three Collaborative Network Award grants for a total<br />

investment of $18.92 million toward accelerating the pace<br />

of progressive MS research. More than 2.3 million people<br />

worldwide live with MS and more than one million of those<br />

living with the disease have progressive multiple sclerosis.<br />

(MSRA Wire, 22/09/<strong>16</strong>).<br />

On behalf of the <strong>Bulletin</strong> Team first let me begin by wishing<br />

everyone a Merry Christmas and a Happy New Year. The<br />

weather can be a little tricky but the climate is beautiful and<br />

if spring hasn’t lightened your mood the brilliant summer light<br />

we now enjoy should put an end to those wintery blues that<br />

experts tell us are related to changes in seasons.<br />

It is not by accident or seasonal change, however, that this<br />

summer edition of your <strong>Bulletin</strong> is packed full of extraordinary<br />

good news, information and articles for you to enjoy. <strong>MSWA</strong>’s<br />

outstanding results over the past year have been achieved<br />

through design and very hard work by the management and<br />

fundraising team in what has now turned into an extremely<br />

competitive marketplace.<br />

Nevertheless, your Society, <strong>MSWA</strong>, has once again recorded<br />

its best ever year, and now we have great pleasure in<br />

telling you all about it. This record breaking achievement<br />

is summarised in more detail in the article dealing with the<br />

Annual General Meeting (AGM).<br />

<strong>MSWA</strong> has produced a record surplus and invested heavily in<br />

increasing services to the Membership, and over $2.2 million<br />

dollars of it has been invested in research, $500,000 of which<br />

will go directly to the International Progressive MS Alliance.<br />

Professor Anders Svenningsson, Head of the Neuroimmunology<br />

Unit at Umeå University in Sweden, in a talk about shifting the<br />

focus of research from relapsing-remitting MS to progressive<br />

MS, has this to say about the future.<br />

“The way we treat MS today, the way we control relapsingremitting<br />

MS patients, we have almost completely solved the<br />

problem. So we have a group of patients where we can do<br />

almost nothing, if we treat them right and keep them healthy.<br />

It is the ones who have progressive MS we have nothing to do,<br />

besides it is natural to switch the focus to this group because<br />

that’s where we are needed.<br />

I think the Alliance helps us to see really where we should<br />

place the effort research-wise and that’s very important,<br />

and it is helpful to see that this is different from the early<br />

stages of MS where the mechanisms there are really<br />

different … I would encourage a very patient-focused,<br />

patient-centred type of research … this is the biggest quest<br />

we have today … I hope they [people with the progressive<br />

types of the disease] will be patient and have faith that<br />

we really will not give up in trying to solve this question.”<br />

(MSRA Wire, October 20<strong>16</strong>).<br />

Elsewhere in your <strong>Bulletin</strong> you will find our CEO, Marcus<br />

Stafford’s announcement of the NDIS platform in WA; what<br />

it means for Members; for <strong>MSWA</strong> as an organisation; and<br />

the progress made in widening our doors to support all<br />

neurological conditions.<br />

As the end of the year is upon us, Sue Shapland, General<br />

Manager Member Services, takes the opportunity to reflect<br />

on what <strong>MSWA</strong> has achieved in providing services to<br />

Members, the highlights and the challenges, and the changes<br />

in our lives. Sue also brings you her Research Roundup, and a<br />

detailed notice of <strong>MSWA</strong>’s Christmas closure.<br />

You will also find a report on our recent Annual General<br />

Meeting where once again <strong>MSWA</strong> continues to post records on<br />

top of previous record results. People with multiple sclerosis<br />

in the West are indeed fortunate to have such a strong and<br />

financially healthy organisation to support us, and especially<br />

in comparison to what’s on offer elsewhere.<br />

We also offer you plenty of other articles to fill in your leisure<br />

time over the holidays. Ben Mathews, <strong>MSWA</strong> physiotherapist,<br />

provides us with a new slant on Pilates. Occupational Therapist<br />

Robyn Loxley talks about assistive technology to secure your<br />

home. Counsellor Karen Brown asks the question, “Are you<br />

someone who cares?” for a person with multiple sclerosis.<br />

Sarah Lorrimar, Co-ordinator of Health Education and Peer<br />

Support, takes up the necessary adjustment of living with your<br />

diagnosis. Nigel Carey, Manager NDIS Business Development<br />

Unit at <strong>MSWA</strong>, informs you about the help available as the<br />

NDIS opens more trial sites.<br />

4 | <strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong>

Then of course we have your regular insightful article by Ros<br />

Harman, who talks about old friends and reunions. Someone<br />

who always makes the best of her circumstance is Narelle<br />

Taylor, who talks about remaking her life in a nursing home.<br />

Dr Ong has some New Year resolutions to add to your list. And<br />

of course, we have our news from the South West and Albany,<br />

plus all the metropolitan Outreach News.<br />

Finally, from all of us here at the <strong>Bulletin</strong> we would<br />

like to thank you, our readers, for the support and<br />

encouragement you have given us throughout the year.<br />

Have a very Merry Christmas, keep cool, and we will be<br />

back with you early in the New Year.<br />


The History Project has been brewing for some time (since<br />

1987 actually, when the Society moved from Clontarf to our<br />

new Centre here at Wilson), but now we are getting really<br />

serious about it all. We have assembled a small team of<br />

writers and set the rather ambitious target of completing the<br />

project by the end of next year.<br />

Now we are asking for your assistance. If you have any<br />

photos you think might be useful you can mail them to<br />

us at <strong>MSWA</strong> Locked Bag 2 Bentley DC WA 6983. Should<br />

you like to write to us about your recollections our email<br />

address is: bulletin@mswa.org.au<br />




Wilson and most <strong>MSWA</strong> centres are closed between 19/12/20<strong>16</strong> and re-open on varied dates from 9/1/2017.<br />

If you need to contact the Member Services team during the Christmas closure please either use the<br />

‘Contact us’ email on our website, enquiries@mswa.org.au, or telephone the on-call numbers listed below.<br />


• Non-urgent Nursing enquiries (19/12/<strong>16</strong> - 13/1/17): 0458 362 188<br />

• Counselling (10am-2pm) (21/12/<strong>16</strong> - 4/1/17): 0458 999 422<br />

• Individual Options 0417 982 814<br />

If you require urgent health advice or attention you can:<br />

• Telephone Health Direct 1800 022 222 (24-hour service)<br />

• Telephone a Locum service eg Doctor Doctor on 13 26 60<br />

• Present to an emergency department<br />

• Telephone Lifeline 24/7 Crisis Line – Telephone crisis support,<br />

suicide intervention and prevention, mental health support service – 13 11 14<br />

<strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong> | 5

From the desk of the CEO<br />


“The secret of change is to focus all of your energy, not on fighting the old, but on building the new.”<br />

The words of Dan Millman, but I wish I’d thought of them.<br />

The introduction of the National Disability Insurance Scheme<br />

(NDIS) has seen a new and improved disability sector in<br />

Australia. It has placed the power where it belongs, in the<br />

hands of the consumer. It has changed how people living with<br />

a disability receive services and support and additionally,<br />

has fired <strong>MSWA</strong>’s ambitions to ensure continued support for<br />

people living with MS who are not eligible for NDIS funding.<br />

The Scheme has been in a trial phase in WA since 2014 and<br />

will see a full state roll out from July 2017. Throughout this trial<br />

phase, there have been two models in governance – State and<br />

Federal. I have long stated that a State managed and operated<br />

model under an overarching national framework was the best<br />

way forward for people living with disabilities in our State.<br />

This will result in strong governance, consistency and quality<br />

standards under Federal auspices with a relationship model<br />

implemented by WA leaders and managers who are close to<br />

the customer and understand our environment.<br />

I am pleased to report that earlier this month, after protracted<br />

and sometimes difficult negotiations, the Federal and State<br />

Governments came to an agreement on the NDIS and its<br />

governance model. Under the agreement, reached by Federal<br />

Minister for Social Services Christian Porter and WA’s Disability<br />

Services Minister Donna Faragher, the WA NDIS will operate as<br />

part of a collaborative partnership that plays to mutual strengths.<br />

This decision needed compromise and this decision needed<br />

courage. Both Ministers are to be congratulated. This decision<br />

is both the right and the smart one.<br />

The original brainchild of the Labor Government with<br />

subsequent implementation by the Coalition, this agreement<br />

transcends politics. As an organisation, we have been<br />

preparing for this transition for some time. In fact, the very<br />

first hint at this strategy came in a paper submitted to the<br />

Society’s Board in 2003. Even then, we recognised that<br />

change was necessary if we were to advance and succeed.<br />

Our new brand – <strong>MSWA</strong> – reflects the realities of this new<br />

world. It builds on our rich history and reputation while<br />

incorporating our service provision to people with other<br />

neurological conditions. This service provision is something<br />

we have been delivering for years, but takes on an even<br />

greater importance in the face of the NDIS. You have probably<br />

seen our new contemporary logo as well as our new website,<br />

publications and signage that reflect this change. However,<br />

beneath this new veneer, our organisation’s heart beats with<br />

the same passionate beat. Our dedication is unswerving and<br />

we are here to continue to provide services and support to our<br />

2,200 Members living with multiple sclerosis across the State.<br />

This year alone, we committed a record-breaking $2.2 million<br />

to MS research and are developing new facilities across WA<br />

to better support our Members. Our new Bunbury Community<br />

and Health Services Centre recently opened its doors to<br />

Members. Once the NDIS rolls through the Bunbury area it will<br />

be there to assist people with other neurological conditions<br />

too. Both people with MS and other neurological conditions<br />

will be served for many decades.<br />

Meanwhile, in Perth’s northern suburbs, we are developing a<br />

new Member and Client Services facility in the community of<br />

Butler. We have submitted plans to the council and expect to<br />

hear a decision any time now! The proposed centre will be an<br />

<strong>MSWA</strong> Services Hub which will provide a base for our nursing<br />

and allied health team to see people onsite and conduct<br />

home visits locally. Plus, the adjoining development will also<br />

include a high support accommodation facility, equipped with<br />

fully self-contained units, for people living with MS and other<br />

neurological conditions, much like our existing facilities in<br />

Hamilton Hill and Treendale. The facility will provide onsite<br />

24-hour, 7-day a week care for younger people to ensure they<br />

live in age appropriate accommodation.<br />

There are exciting times ahead and there is much to look<br />

forward to in 2017. As we welcome the next chapter in Western<br />

Australia’s growth, we bid farewell to our management of the<br />

MS Society of South Australia and the Northern Territory.<br />

Having managed the Multiple Sclerosis Society of SA & NT<br />

for two and a half years after they had found themselves<br />

in serious difficulty, we have handed back the reins to SA<br />

management where it rightfully belongs. Through what<br />

has been a true team effort, we have recorded a positive<br />

performance across all areas of their business and the<br />

Society now sees itself set on solid ground with a positive<br />

future ahead. Some of those strong foundations include a<br />

30% growth in healthcare services, a funding contribution<br />

to research, the posting of the highest gross revenue and<br />

net profit in the Society’s history and the return to a positive<br />

balance sheet. It has been both a pleasure and a privilege to<br />

have played a part in leading a dedicated workforce of over<br />

100 staff to lay the foundations of success. Now, it is with<br />

sincerity and unswerving confidence that I wish them well<br />

and look forward to watching the continued development of<br />

the Society as it supports people living with MS in SA & NT.<br />

It has truly been a year of record-breaking milestones at<br />

<strong>MSWA</strong> and I look forward to sharing updates with you in the<br />

next edition of <strong>Bulletin</strong>.<br />

Until then, I wish you and your families a very happy<br />

Christmas and a safe New Year!<br />

6 | <strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong>

A message from the General Manager –<br />

Member Services<br />


“Take rest; a field that has rested gives a bountiful crop.”<br />

Ovid<br />

As the year comes to a close we once again say: where did<br />

the time go! It never ceases to amaze me how quickly the<br />

months zoom past and it’s time to get out the Christmas<br />

decorations; which I love, I must admit!<br />

I also enjoy the opportunity to catch up with the family and<br />

have some time off to rest up before 2017 hits us. Having<br />

worked for many years nursing in the hospital I still appreciate<br />

the opportunity to actually take Christmas off!<br />

I am also aware that for many, the festive season can be a<br />

time of sadness or loneliness, for a variety of reasons, so our<br />

thoughts are with those less fortunate than ourselves.<br />

The end of each year brings an opportunity to reflect on what<br />

we have each achieved, what the highlights, challenges and<br />

the changes in our lives are.<br />

Here at <strong>MSWA</strong> we have had another huge year. It has been<br />

varied and exciting and I am very proud of what we have<br />

achieved both as an organisation and of my Member Services<br />

team, which continues to grow! I am so proud to work<br />

with such great people who are committed and dedicated to<br />

their work.<br />

Working with MSSANT to help get them back on track has<br />

been a very rewarding experience and we wish them well as<br />

they take charge of their organisation again. The staff were<br />

great to work with and I will miss catching up with them each<br />

month. I couldn’t help but notice the wide contrast between<br />

the services and supports we offer here in WA and what they<br />

have available for people living with MS elsewhere. The NDIS<br />

will make a huge difference when it eventually rolls out in<br />

those locations.<br />

Our Bunbury Community and Health Services Centre will<br />

be finished by the time you receive this <strong>Bulletin</strong>. This is an<br />

amazing building which we can be proud of, and that will<br />

provide greater opportunities for expansion of services in the<br />

region. The South West team continues to expand to meet<br />

the demands of the WA NDIS trial site and grow our MS<br />

supports locally.<br />

We have seen many changes this year. Marilyn Sylvester,<br />

our Physiotherapy Manager, retired after many years with<br />

us and we have now welcomed Dave Hathorn into that role.<br />

He has some exciting ideas for his team and our services<br />

going forward which is great for <strong>MSWA</strong> and our Members.<br />

Nigel Carey and Mark Douglas have revved up our NDIS<br />

Unit as the trial sites evolve and their team is dedicated to<br />

increasing awareness of the NDIS and supporting Members<br />

to access the Scheme as it comes to your area. Of course, we<br />

are still awaiting the final decision on the exact model and roll<br />

out timelines but we will keep you posted.<br />

We have expanded our Peer Support Groups and will continue<br />

to do so, and we have also added in some new services like<br />

massage in Denmark, Margaret River and Northam.<br />

Our Individual Options staff, providing supports and services in<br />

people’s homes, continue to do an amazing job, as do the staff<br />

at the high support accommodation and respite programs.<br />

We are experiencing ongoing change, particularly with the<br />

NDIS. The most significant change this year was of course<br />

our re-branding and new logo! Our new name, <strong>MSWA</strong>, and<br />

our modern and refreshing logo heralds an exciting new era<br />

whilst still paying homage to our roots. We also upgraded the<br />

website so take a look if you haven’t already!<br />

What hasn’t changed is our passion for providing quality<br />

services and supporting people living with MS from the time<br />

of their diagnosis.<br />

As we expand our business opportunities under the NDIS,<br />

providing services for people living with MS and other<br />

neurological conditions, we will of course continue to support<br />

our Members throughout their journey.<br />

2017 will be another exciting year for <strong>MSWA</strong> and our<br />

Members. The north metro services hub and high support<br />

accommodation project will begin and we are awaiting the<br />

release of more MS treatments including one we believe, with<br />

some benefit for progressive MS.<br />

I wish you and yours a safe and happy festive season<br />

and I hope 2017 will be a great year for you. Personally,<br />

I am also looking forward to the birth of our second<br />

grandchild and hoping the crazy new puppy we have<br />

starts to settle down!<br />

<strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong> | 7


MEETING 20<strong>16</strong><br />


OF WA (<strong>MSWA</strong>), WILSON CENTRE, THURSDAY 20<br />

OCTOBER 20<strong>16</strong>. A RECORD RESULT; A RECORD INCREASE<br />





Dr Greg Brotherson<br />

“Our history is rich and proud so we want to retain<br />

that essence; yet we must also present as an expansive<br />

twenty-first century organisation with a fresh focus.”<br />

Marcus Stafford, CEO<br />

<strong>MSWA</strong>’s President, Mr George Pampacos, welcomed<br />

everyone, called for apologies, the confirmation of the 2015<br />

AGM minutes, and asked if there was any business arising<br />

from these minutes (items 1 to 3 on the agenda).<br />

There being none Mr Pampacos said he is very proud to say<br />

it has been another successful year for the Multiple Sclerosis<br />

Society of WA (<strong>MSWA</strong>). In his published report Mr Pampacos<br />

said even with a tough economic WA and national climate,<br />

the trial introduction of a national disability scheme and new<br />

competitors into the home lottery market, we still broke all<br />

our previous records, and did so with passion, dedication and<br />

professionalism.<br />

Mr Pampacos gave a detailed report on <strong>MSWA</strong>’s continued<br />

position as the largest contributor to research in Australia<br />

into finding a cause and cure for multiple sclerosis, with an<br />

investment of over $2 million dollars.<br />

Of that amount, $459,000 will go directly towards funding<br />

WA social and applied research projects that we identified<br />

through a funding round started in 2015, that will now fund<br />

these projects for a second year. $500,000 will be provided<br />

directly to an international research project into Progressive<br />

MS, and the balance of our funds will go to various approved<br />

MS research projects. For the first time, we have allocated<br />

over $200,000 to research into other neurological conditions.<br />

This year also saw another record within Member Services<br />

with a 12% growth and provision of more than 460k<br />

service hours to people with multiple sclerosis. In addition,<br />

our provision of services to people with other neurological<br />

conditions increased by 5% to more than <strong>16</strong>5k hours.<br />

Mr Pampacos provided a wrap up of our final year in a<br />

management role of the MS Society in South Australia and<br />

Northern Territory (MSSANT), achieving an outstanding<br />

result there in the past year, with a profit of $750,000. This<br />

is a record net profit in the history of the organisation and a<br />

record cash flow too, with us being able to return a positive<br />

net position on their balance sheet. For the first time in many<br />

years MSSANT have contributed to MS Australia and to MS<br />

Research Australia.<br />

We did all this whilst also receiving the highest staff and<br />

client satisfaction rating in the Society’s history via our South<br />

Australian Survey. In just under two years we have turned<br />

MSSANT into a profitable organisation and strong platform<br />

for it to launch into the NDIS when they go back under their<br />

own management in a few months.<br />

This was achieved by our amazing 600-plus employees and<br />

volunteers, who, led by our CEO, senior management and<br />

volunteer Board make <strong>MSWA</strong> one of the leading not-for-profit<br />

organisations in the country.<br />

Every <strong>MSWA</strong> staff member plays their part with passion and<br />

commitment to help <strong>MSWA</strong> achieve our goals, while providing<br />

the best care and support possible for our Members. No<br />

matter how proud we are of 20<strong>16</strong>, now isn’t the time to rest<br />

as we are excited for what 2017 offers.<br />

The President provided an insight to our plans for expansion in<br />

2017, the opening of our Member Services and Administration<br />

hub in Bunbury towards the end of 20<strong>16</strong>. Building commences<br />

for our Member services and supported accommodation<br />

facility in the northern suburbs and we are making plans for<br />

our land in Shenton Park.<br />

Mr Pampacos then called on the Treasurer, Mr Peter Wright,<br />

to present the financial report (item 5). Mr Wright said he<br />

was pleased to announce that off the back of very successful<br />

Mega Home Lottery and Luxury Lottery campaigns we are<br />

pleased to announce that <strong>MSWA</strong>’s surplus for the year was<br />

$4,328,843, reflecting another record year. This surplus is<br />

particularly pleasing as it will support and enable the plans<br />

for 2017 outlined above by the President.<br />

8 | <strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong>

For more information, Mr Wright concluded by encouraging<br />

the Membership to read the annual audited Financial<br />

Statements, particularly the Statements of Comprehensive<br />

Income. These provide a detailed breakdown of income, costs<br />

and net contribution by function. Full details are also available<br />

in the 2015-20<strong>16</strong> Annual Report.<br />

Mr Marcus Stafford then presented his Chief Executive<br />

Officer’s report by PowerPoint presentation (item 6). In<br />

his published report Mr Stafford said that as the disability<br />

world undertakes significant change, <strong>MSWA</strong> has been<br />

working diligently to ensure that we are ready. We continue<br />

to set strong goals and break records, as we build our<br />

organisation for the future. At the heart of all of this is the<br />

person we are here to serve; the person living with MS. Our<br />

resolve to be there for them on every step of their journey<br />

remains unchanged.<br />

Mr Stafford then went on to report on our record-breaking<br />

contribution of $2.2 million to MS research, as also covered<br />

by the President, above.<br />

He outlined our preparedness for the full roll out of the<br />

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

been in a three-site trial phase since 2014. In October 20<strong>16</strong>,<br />

three further trial sites were rolled out to cover Armadale,<br />

Murray and Serpentine Jarrahdale; Bayswater, Bassendean,<br />

Chittering, Toodyay and York; and Northam.<br />

The reality is the Scheme will not deliver as much as we’d like<br />

for everyone; most notably for the newly diagnosed and low<br />

support Members, indeed, for our Members over 65, it won’t<br />

deliver at all.<br />

Mr Stafford explained: “That’s where our service provision to<br />

people with other neurological conditions comes in”.<br />

The great thing about the NDIS marketplace is that it rewards<br />

organisations that perform well and allows them to extend<br />

their service provision to the people with disabilities who they<br />

are here to serve.<br />

Our historical results have allowed us to do great things and<br />

our continued growth will support our dreams and ambitions.<br />

We are proud of our history and we know what <strong>MSWA</strong> stands<br />

for and believes in, but we need to get the word out there.<br />

As a ‘one-stop shop’ that will provide the best service to people<br />

with MS and all neurological conditions, we are moving ahead<br />

very well with our growth plans. We currently have fifteen<br />

locations in the State. As outlined in the President’s Report,<br />

our growing footprint will help to achieve our goal of providing<br />

both convenience and quality for Western Australians living<br />

with multiple sclerosis and all neurological conditions.<br />

Mr Stafford closed by extending his thanks and<br />

congratulations to <strong>MSWA</strong>’s 600-plus staff and sincere thanks<br />

to our many stakeholders who have combined to make it all<br />

happen including our Board members, management, staff,<br />

volunteers, government partners, suppliers, business and<br />

retail customers.<br />

“Exciting and changing times await us. The strong foundations<br />

that we have built over the last decade position us perfectly<br />

to continue to provide more and more services to people<br />

with multiple sclerosis and all neurological conditions.”<br />

Marcus Stafford, CEO<br />

Item 7: Business on Notice.<br />

There was no business on notice.<br />

Item 8: Confirmation of the election of persons to the<br />

Board of Directors.<br />

In accordance with the Constitution, <strong>MSWA</strong> had called for<br />

nominations for the election of Directors from Financial<br />

Members and Associates. Nominations were received from<br />

Glennys Marsdon, and as no other nominations were received<br />

Glennys was declared duly elected.<br />

Item 9: Appointment of Auditor for the coming year.<br />

It was proposed, moved, seconded and passed that RSM be<br />

appointed Auditor for the financial year ending 2017.<br />

Item 10: Questions from Members.<br />

As there were no questions Mr Pampacos thanked everyone<br />

for their attendance, invited everyone to join the directors and<br />

managers for morning tea, and closed the AGM.<br />

Copies of the Annual Report and audited Financial<br />

Statements, and particularly the Statement of<br />

Comprehensive Income, are available on request<br />

phone 9365 4888.<br />

<strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong> | 9





Study demonstrates that people living with MS have a<br />

unique bacterial signature in their gut.<br />

Reported by MS Canada 12 September 20<strong>16</strong><br />

A person’s gut is home to trillions of bacteria known as the<br />

gut microbiome. These tiny microbes are essential partners<br />

in good health: they assist in the digestion of certain foods,<br />

produce a variety of nutrients, interact with and help train<br />

one’s immune system, and aggressively defend the gut from<br />

invading pathogens.<br />

Disruption to the gut’s natural bacterial balance is linked to a<br />

number of different disorders, including MS. There is emerging<br />

evidence showing that gut bacteria interact with the immune<br />

system daily. Some gut bacteria can release chemicals that<br />

activate immune cells known to play a damaging role in<br />

MS, while others produce chemicals that suppress MS-like<br />

symptoms in mice. It is easy to see why insights into this<br />

possible MS link could prove vital.<br />

A study published in the journal ‘Scientific Reports’ by Dr<br />

Ashutosh Mangalam and his team from the Mayo Clinic and<br />

the University of Iowa set out to explore the differences in the<br />

gut microbiome between individuals living with MS and the<br />

rest of the population; examining stool samples.<br />

Participants with relapsing-remitting MS had a distinct<br />

bacterial profile relative to non-MS participants – some types<br />

of bacteria were found in much greater numbers in the MS<br />

group, while other bacteria were more numerous in non-MS<br />

participants.<br />

Within the MS group, the profile differed depending on how<br />

active a participant’s disease was at the time of sample<br />

collection. Participants with an active form of the disorder had<br />

much less diversity in their gut bacteria relative to participants<br />

with less active disease.<br />

The researchers concluded that this imbalance may be one of<br />

the missing environmental factors that affects the development<br />

and course of MS in those with a genetic predisposition. They<br />

acknowledged more work is needed to expand this study to<br />

a larger group over longer periods of time, and to determine<br />

whether a difference in the gut microbiome is a contributor,<br />

or consequence, of the disease.<br />

Are headaches more common during a relapse?<br />

A study by Togha M, Abbasi Khoshsirat N, Moghadasi AN, et al.<br />

Previous studies showed that headaches and migraines<br />

are more common in people with MS than in the general<br />

population.<br />

This study included 57 people with RRMS and 57 people<br />

without a neurological condition. It found that nearly half<br />

(45.6%) of the people with MS having a relapse also<br />

experienced a headache, compared to over a third (38.6%)<br />

of people when they were in remission, whilst just under<br />

a third (27.7%) of people without a neurological condition<br />

experienced a headache.<br />

People diagnosed with MS in the last three years were more<br />

likely to experience headache during a relapse than those<br />

diagnosed for longer.<br />

MSRA Updates:<br />

Healthier lifestyle linked to lower<br />

disability levels in MS<br />

There is great interest in the MS<br />

community as to whether taking<br />

control of lifestyle factors can<br />

change disease outcomes. There<br />

is growing evidence that factors such as smoking, physical<br />

activity, and the presence of other health conditions can<br />

affect disease course. This area of research is a difficult one<br />

with so many variable factors to be considered.<br />

A recent study was published in the journal Plos One by<br />

Professor George Jelinek, and his research group at the<br />

University of Melbourne has added to the growing evidence<br />

for an association of lifestyle factors with disability levels.<br />

2,469 people with MS from 57 countries answered a survey<br />

which asked questions about their MS diagnosis, age, gender,<br />

educational status, disability level and other factors such as<br />

smoking, alcohol use and medication. The survey included<br />

validated measurement questionnaires to assess diet and<br />

exercise levels.<br />

The population analysed in the study were recruited through<br />

the Overcoming MS Program. They were shown to have an<br />

unusually healthy lifestyle with higher than average scores<br />

for diet, low levels of smoking and a high proportion were<br />

moderately or highly physically active. Around 30% practiced<br />

meditation and the majority were using vitamin D and omega<br />

3 fatty acids supplements. Only 10% of the group had major<br />

disability due to their MS.<br />

Being a current or former smoker was associated with higher<br />

levels of disability, consistent with other studies. One study<br />

recently showed that quitting smoking after being diagnosed<br />

with RRMS was associated with a significant delay in the time<br />

to reach a diagnosis of secondary progressive MS.<br />

10 | <strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong>

People who had used disease modifying drugs in the preceding<br />

12 months or more were significantly more likely to be in the<br />

low level of disease category than the major disability category.<br />

Of the modifiable risk factors, better diet, not smoking, higher<br />

levels of exercise, omega 3 supplementation and disease<br />

modifying drug use were associated with lower levels of disability.<br />

MSRA added that a number of studies they have supported,<br />

including the AusImmune study and the Australian MS<br />

Longitudinal Study, are also studying the role that lifestyle<br />

factors may play in MS.<br />

Can genes predict the clinical course of MS?<br />

We know that MS results from a combination of genetic and<br />

environmental factors. Extensive research in Australia and<br />

internationally, has helped identify over 110 genes contributing<br />

to the risk of developing MS.<br />

MS is a varied disease affecting people differently, with a<br />

diverse range of symptoms and different rates of accumulating<br />

disability, but we don’t know why.<br />

Scientists have attempted to determine whether genes also<br />

play a role in the way a person’s MS develops over time. The<br />

ability to predict the future severity of the disease in a person<br />

is vital to improve counselling and decision making about<br />

appropriate treatments.<br />

The Ausimmune/Auslong cohort comprised a group of<br />

patients who had experienced a first demyelinating event that<br />

have been followed over many years. This group had a high<br />

chance of developing MS and this study, funded by MSRA,<br />

aimed to determine whether genetic makeup played a role<br />

in conversion to MS and the symptoms and disability they<br />

experienced over five years.<br />

A new study from Australian researchers, led by Professor Bruce<br />

Taylor at the Menzies Institute for Medical Research Tasmania,<br />

has looked at the role of genetics on the clinical course of MS.<br />

The study examined 127 people from the original cohort and<br />

concentrated on 1<strong>16</strong> genetic changes already shown to increase<br />

the risk of MS. They found there was a group of seven genetic<br />

changes which increased likelihood of converting to a full<br />

diagnosis of MS, usually based on the development of a new<br />

relapse or new lesion on MRI and their subsequent relapse risk.<br />

A different group of seven genetic changes predicted whether<br />

disability would significantly worsen over time. People who had<br />

a greater number of the seven genetic variations were more<br />

likely to have higher levels of disability. For example, people<br />

with six of the seven genetic changes were much more likely to<br />

have disability progression than those who only had two.<br />

These results suggest two genetic pathways at work in<br />

MS, one driving the inflammatory manifestations (relapses)<br />

and another relating to neurodegeneration and disability<br />

progression in people with MS. This suggests the underlying<br />

processes are likely to be different and implies different<br />

treatment approaches may be warranted.<br />

Together the papers suggest that genetics play a role in<br />

disability progression in the mid-term but over the longer<br />

term of the disease, the role of genetics in disability outcomes<br />

seems to become less important.<br />

The Australian study calculated that genes contribute only<br />

a third of the overall risk of increasing disability; implying<br />

other factors, such as environment and lifestyle, as well as<br />

treatment decisions, are playing a significant role in a person’s<br />

MS experience. For example, that whether or not a person<br />

continues to smoke after being diagnosed, can influence level<br />

of disability over time.<br />

From the National MS Society:<br />

Researchers Perform Large Genome-wide Analysis of<br />

Multiple Sclerosis<br />

In a large-scale, genome-wide analysis of more than 110,000<br />

samples, a worldwide consortium of scientists identified 200<br />

genetic loci associated with MS.<br />

Formed in 2003, the International Multiple Sclerosis Genetics<br />

Consortium brings together researchers from 30 institutions<br />

in 18 countries that study the genetics of MS. They combined<br />

data from multiple genome-wide association studies, and<br />

assembled data from 47,351 people diagnosed with MS and<br />

68,284 without the condition.<br />

Comparing the genomes of people with and without MS, they<br />

identified 200 variants significantly more common in those<br />

with MS. Most of these variants implicate genes associated<br />

with immune cells and immune system function, including a<br />

few potentially specific to brain-related functions.<br />

Interestingly, many of the genes identified are known to be<br />

involved in other autoimmune diseases, such as rheumatoid<br />

arthritis, Type 1 diabetes, and ulcerative colitis.<br />

Using the same collaborative approach, the IMSGC now hopes<br />

to turn its attention to the genetic underpinnings of progressive<br />

multiple sclerosis, the most aggressive form of MS.<br />

MSIF Updates:<br />

Researchers believe that one day Stem Cell Therapy may<br />

be used in treating MS<br />

Most cells in the body can only carry out very specific roles<br />

and are called specialised cells.<br />

Stem cells are different as they have two unique features; the<br />

ability to make many copies of themselves (self-renewal), and<br />

to produce specialised cells (differentiation).<br />

Stem cell therapy is any treatment that uses or targets stem<br />

cells. This is usually to help replace or repair damaged cells<br />

or tissues, but can also be used to prevent damage from<br />

happening in the first place.<br />

Researchers believe that stem cells may, one day, be used<br />

to treat MS, but research into stem cells is still at the very<br />

early stages and there are currently no approved stem cell<br />

therapies for MS. International consensus.<br />

Read more at:<br />

mswa.org.au/researchupdate<br />

<strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong> | 11




The past couple of months have been extremely exciting and<br />

memorable ones.<br />

1 October saw the launch of the new WA NDIS Trial Sites in<br />

Armadale, Serpentine Jarrahdale and Murray!<br />

This has provided a great opportunity for our NDIS team to<br />

visit the area and connect with <strong>MSWA</strong> Members living there.<br />

We have especially enjoyed meeting a wide range of Clients<br />

at our various local expos, farmer’s markets, fairs and<br />

information sessions.<br />

The Team were also able to help many people successfully<br />

begin the application process for the WA NDIS.<br />

Overall this initiative is part of a longer-term strategy to embed<br />

<strong>MSWA</strong> as part of the local community. This is particularly<br />

important as we are then better equipped to understand the<br />

key issues facing our Clients and the services and supports<br />

required, especially in the more rural NDIS areas.<br />

With this latest launch, we currently have four trial sites in the<br />

following areas:<br />

• Lower South West (Busselton and surrounds) (WA NDIS)<br />

• Cockburn and Kwinana (WA NDIS)<br />

• Perth Hills (NDIS)<br />

• Armadale, Serpentine Jarrahdale and Murray (WA NDIS)<br />

Please note that these four sites will be joined by a new<br />

additional NDIS Trial Site in January 2017.<br />

This new trial site will cover:<br />

• Bayswater<br />

• Bassendean<br />

• Chittering<br />

• Toodyay<br />

• York<br />

• Northam<br />

Please contact the <strong>MSWA</strong> NDIS Team now if you want to<br />

confirm whether your address is in these areas and how<br />

the Scheme may benefit you.<br />

Overall, <strong>MSWA</strong> continues to expand the number of new Clients<br />

we have enrolled in the NDIS, most whom have chosen us as<br />

their provider. The number of new Clients has grown by some<br />

30% since April 20<strong>16</strong>.<br />

Most of these cases are Members who have MS, but we are<br />

also working with an increased number of Clients with other<br />

neurological conditions.<br />

Much of this success is down to the very smooth and easy<br />

customer journey that our NDIS Team offers our <strong>MSWA</strong><br />

Members and Clients.<br />

The NDIS Team is always available to take you through the<br />

entire application process and then help you develop plans<br />

which maximise the supports and services you can receive.<br />

Please contact any of the following <strong>MSWA</strong> NDIS Team<br />

Members to see how we can assist you:<br />

Mark Douglas: Operations Manager<br />

Email:<br />

mark.douglas@mswa.org.au<br />

Phone: 9365 4824<br />

Christine Richards: Client Relationship Coordinator<br />

Email:<br />

christine.richards@mswa.org.au<br />

Phone: 9365 4867<br />

Pranjal Pawar: Client Relationship Coordinator<br />

Email:<br />

pranjal.pawar@mswa.org.au<br />

Phone: 9365 4810<br />

The NDIS Team looks forward to a great 2017 and the<br />

further opportunities it will present for all our Members!<br />

12 | <strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong>

AN UPDATE ON THE <strong>MSWA</strong> FUNDED<br />



In 2015 <strong>MSWA</strong> allocated approximately $500,000 of our<br />

$2 million+ research funding commitment, specifically for<br />

WA projects. We committed to support three Postdoctoral<br />

research fellowships and two Social and Applied projects in<br />

WA for a two-year period.<br />

Here we provide an update from two of the researchers.<br />

Dr Anderson Jones (PhD) <strong>MSWA</strong> Postdoctoral Research<br />

Fellow Telethon Research Institute<br />

Expanding on the PhoCIS (using UV light to increase vitamin<br />

D to try and prevent conversion to MS) project looking at the<br />

mechanisms by which UV affects the immune system and<br />

contributes towards finding a way to stop progression of MS.<br />

Blood samples have been collected from 18 more patients<br />

with Clinically Isolated Syndrome (CIS) as well as 14 patients<br />

with other acute/active demyelinating conditions and healthy<br />

controls. Having immune cell samples from these three<br />

different populations helps identify what changes are specific<br />

to CIS/MS. In addition to immune cells, we have recently also<br />

analysed patient serum samples for Epstein-Barr virus and<br />

vitamin D – two strong risk factors for MS.<br />

Anderson has run approximately two thirds of the samples,<br />

with strong hints of significant and new findings. Once the<br />

remaining samples are analysed the results will be written up<br />

in a paper and submitted for publication.<br />

Anderson has also presented at the annual <strong>MSWA</strong> Members<br />

MS Awareness Week Forum in June and at an International<br />

Conference.<br />

Dr Lucinda Black (PhD) <strong>MSWA</strong> Postdoctoral Research<br />

Fellow; School of Public Health, Curtin University<br />

Investigating dietary factors and the risk of multiple sclerosis.<br />

Exploring patterns of food intake, intake of specific foods and<br />

nutrients and whether they contribute to the risk of MS.<br />

Lucinda travelled to the US and undertook training in analysis<br />

of data from the MS Sunshine Study and began conducting<br />

statistical analysis of the dietary intake data.<br />

Lucinda is working with students to analyse data from the<br />

Ausimmune Study and the MS Sunshine Study in relation to<br />

the following topics: dietary patterns and risk of MS, meat<br />

consumption and risk of MS, antioxidant intake and risk of<br />

MS, common dietary changes made by people with MS.<br />

Lucinda has also received detailed and tailored advice<br />

from international experts in how to address her research<br />

questions using the most up-to-date statistical methods.<br />

The skills she developed will be invaluable for high-quality<br />

analysis of dietary data from the Ausimmune Study and the<br />

MS Sunshine Study.<br />

Lucinda presented at the annual <strong>MSWA</strong> Members MS<br />

Awareness Week Forum and has attended national and<br />

international conferences.<br />

<strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong> | 13





Being diagnosed with MS can be both an emotional and<br />

overwhelming experience given the initial shock followed by<br />

the amount of information to digest, decision making and<br />

questions to be answered. Many people feel shocked, scared,<br />

angry and in denial, whilst others feel relieved they can now<br />

identify the cause of their symptoms. Just like the impact of<br />

MS is different for everyone, so is the way that MS is dealt<br />

with. It will take time to figure out your best coping strategies.<br />

It’s important to remember that although it is likely you will<br />

have to make some adjustments to your life, having MS does<br />

not mean you need to completely change the life you had<br />

planned before diagnosis. The advent of increasingly effective<br />

treatments has changed things dramatically and are keeping<br />

people well. MS can be effectively managed and though there<br />

is currently no cure for MS, many people continue to work,<br />

be involved in the community and socialise as usual. You are<br />

not alone; you can be supported in making positive choices to<br />

help you adjust to the life changes brought on by MS.<br />

Stay positive<br />

MS is unpredictable and its effects will be different for<br />

each person. The unpredictability of MS can be very<br />

challenging but it is important to maintain a positive outlook<br />

because people who live with MS can live as fulfilling a life as<br />

someone without.<br />

We may not be able to control what happens to us, but we can<br />

control our reactions to change. Rather than thinking of what<br />

may happen in the future, try to focus on what is happening<br />

in the now. MS may create changes to the way you usually<br />

do things but there are strategies to overcome this and still<br />

do the things you want to do. The key is to be flexible and<br />

creative with problem solving as this will give you the best<br />

opportunity to adapt to changes. Viewing change in this way<br />

is not always easy and it can create feelings of doubt and<br />

negativity. It is important to seek support when you need it<br />

and let yourself be vulnerable.<br />

As mentioned earlier, receiving the diagnosis can be<br />

associated with feelings of sadness, shock and grief or no<br />

emotion at all. It is important to know that there is no right or<br />

wrong way to feel. Your response to your diagnosis is entirely<br />

up to you, so make sure you allow yourself to feel whatever<br />

you need to in your own time.<br />

Keep informed about MS<br />

Knowledge is power. Seek out reliable information so you<br />

know as much as possible about MS. This can positively<br />

change the way you perceive the condition as well as increase<br />

your confidence about adapting to the changes that MS may<br />

bring. Learning more about MS and the ways to manage it<br />

will make it easier for you to plan and prepare for the future.<br />

There is information overload on the internet and much of<br />

it is inaccurate so it is important that you use only reliable<br />

sources. <strong>MSWA</strong>, MS Australia, The National MS Society<br />

and MS Trust UK are some of the places to find information<br />

which is useful and dependable. Remember much of what<br />

you read may never be relevant for you; everyone’s<br />

experience is different.<br />

Work with your health professionals<br />

It is useful to work with a team of health professionals<br />

to maintain your health and wellbeing and ensure your<br />

symptoms are well managed. These professionals could<br />

include a neurologist and GP as well as specialist <strong>MSWA</strong> staff<br />

such as the MS Nurses, Physiotherapists, Counsellors and<br />

Occupational Therapists. The level of interaction you have<br />

with your health professionals will depend on how active<br />

your MS is. However, it can be helpful to have a baseline<br />

assessment conducted and advice given. This can be carried<br />

out by an MS Nurse and will allow you to track and make<br />

comparisons to changes in your health over time. The MS<br />

Nurses can provide information on the available treatments,<br />

answer your questions, provide information on symptom and<br />

relapse management, or just be there for support!<br />

Develop a support system<br />

As well as having the support of health professionals, the<br />

support of your friends and family can be extremely helpful<br />

in managing MS. Although it might seem daunting and easier<br />

to keep quiet, talking to those close to you will allow you to<br />

share each other’s concerns, provide support and let you deal<br />

with problems together. Having meaningful connections with<br />

others is a key factor to a positive and healthy lifestyle.<br />

14 | <strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong>

Discussing personal emotions can be hard and there is no<br />

need to rush into these conversations. When you are ready<br />

to have them, opening up to those around you can improve<br />

the understanding of MS and the feelings which can be<br />

experienced when coming to terms with diagnosis. Support<br />

and understanding can also come from the MS community;<br />

joining a peer support group can be a great opportunity to<br />

share your experiences, learn new information and create<br />

friendships.<br />

Maintain your health and wellbeing<br />

The advice given to people living with MS in regard to their<br />

health and wellbeing is the same for the wider population.<br />

This includes undertaking strategies to keep your health at<br />

an optimum level such as regular exercise, a healthy diet,<br />

consuming alcohol in moderation, not smoking, managing<br />

stress and maintaining a healthy work-life balance. Staying<br />

healthy will make it easier to deal with symptoms and relapses<br />

you may experience.<br />

Some people find developing a plan and setting achievable<br />

goals not only provides them with a sense of achievement but<br />

also benefits their health. Maintaining goals will help you feel<br />

more in control, so it is worthwhile rethinking and developing<br />

new goals over time to adjust to any changes MS may create.<br />

These plans could include exercising for fitness, meditation<br />

and massage for relaxation, and treatment for symptom<br />

management to achieve a goal of improved wellbeing.<br />

One of the more important things is to remember to have fun!<br />

Living well with MS includes doing the usual things which<br />

make you happy, whether that’s seeing friends, travelling or<br />

doing hobbies. It is important to take time out for yourself and<br />

do activities which you enjoy.<br />

It is your decision which strategies you undertake to manage<br />

life with MS but remember that there is support from health<br />

professionals as well as friends and family to figure out what<br />

works best for you.<br />

References<br />

http://www.nationalmssociety.org<br />

https://www.mstrust.org.uk/<br />

https://someonelikeme.ca/<br />

<strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong> | 15




The <strong>MSWA</strong> Physiotherapy Department is proud to announce<br />

that we have three new Pilates Reformers at our centres in<br />

Beechboro, Wilson and Rockingham. These were purchased<br />

with generous donations from the Papalia and Ruggiero<br />

families, the Rotary Club of Karrinyup, and Rockingham<br />

Pharmacy 777.<br />

The Reformer is a very versatile machine which, like Pilates<br />

exercises in general, can be modified to suit people of varying<br />

levels of ability. It is unlike the machines found in a gym,<br />

which can only be used to perform a single exercise, such as<br />

a lateral pull down; you can perform strength, stretching, and<br />

balance exercises on the Reformer. You can adjust it to work<br />

on the arms, legs, core, ankles, hips, knees, and to refine<br />

your famous dance moves before your next party!<br />

The Pilates Reformer was invented in the early 20th century<br />

by Joseph Pilates (1883-1967). Pilates developed the system<br />

of exercises whilst working as a medic during World War One,<br />

and the exercises have since taken the world by storm in a<br />

whirlwind of multi-coloured yoga pants and ankle socks.<br />

Initially, Pilates was working in hospitals with injured<br />

soldiers. He noticed that his patients suffered from physical<br />

deconditioning because of being confined to beds for long<br />

periods of time, resulting in various problems not related<br />

to their initial injuries. To combat this, he created several<br />

exercises for his patients to perform whilst lying or sitting on<br />

the edge of a bed. Very like the exercises we physiotherapists<br />

use today to treat people with neurological conditions.<br />

He later went on to develop the ‘Pilates Method’ for athletes,<br />

dancers, and gymnasts, to prevent injuries in their various<br />

sports, and Pilates is now widely used across all forms of<br />

professional sport. For example, a local team that regularly<br />

performs Pilates is Perth Wildcats.<br />

How does Pilates differ from other exercise classes and<br />

gym programs?<br />

The difference between Pilates and other strengthening<br />

programs is that it focuses on stretching and strengthening all<br />

the muscles of the body whilst maintaining optimal posture.<br />

Working on posture is a very significant part of maintaining<br />

function with neurological conditions like MS, and this makes<br />

Pilates highly suitable for our Members. Many of the exercises<br />

that our physiotherapists use to treat our Members have their<br />

foundations in Pilates. These exercises are very useful for<br />

increasing proprioception, or awareness of limbs and body<br />

position, during functional activities such as sitting, kneeling<br />

and walking.<br />

By performing regular exercises that stretch and strengthen<br />

muscles and joints simultaneously, we can delay and reduce<br />

the effects of gravity and muscular weakness that result in<br />

stooped postures that can then increase a person’s risk of<br />

falls, back pain, and poor range of motion.<br />

The benefits from Pilates may include:<br />

• Reduced levels of pain<br />

• Increased range of motion of joints, and increased flexibility<br />

• Increased strength and endurance<br />

• Improvements in mood, cognition, sleep patterns and balance<br />

If you would like to see what all the fuss is about, we will be<br />

having a Pilates evening in the Physiotherapy Department<br />

at Wilson in February 2017. Please email your expression<br />

of interest to ben.mathews@mswa.org.au by 25 January,<br />

and we will update you with further information.<br />

We look forward to seeing you there!<br />

<strong>16</strong> | <strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong>




Have you ever been extremely frustrated when you are resting<br />

in bed, in a chair, indisposed, or just slow at moving, and you<br />

hear a knock on the door, you must get up, and get yourself to<br />

the door! Fatigue is now setting in as you are using valuable<br />

energy that could be saved for more important tasks and you<br />

get to the door and the person has gone! What a waste of<br />

time and energy.<br />

We have recently helped solve this dilemma for some Members<br />

by using the combination of the RING video intercom,<br />

smartphone or tablet and the Nexion remote door strike.<br />

How this works is the RING is positioned at the door and<br />

works off your Wi-Fi network. When someone presses it, the<br />

ring comes through to your smart device, via a downloaded<br />

‘App’, as a video showing who is at the door. There is an<br />

‘accept’ or ‘decline’ button on the device. If you accept, then<br />

you can talk to them and decide whether you want to let them<br />

in via the remote door strike which unlocks the door, or if it is<br />

someone delivering something, tell them where to leave it or<br />

just tell them you are not interested. If you press decline, they<br />

will think no-one is home. Even when away from your home,<br />

you can monitor who comes to the door via your smart device.<br />

The benefits of this include:<br />

• You don’t have to waste energy getting to the door to find it<br />

is someone you don’t want to see<br />

• If it is someone you want to see you can let them in without<br />

having to move<br />

• Safety is an important factor as many of our Members can<br />

be vulnerable when home alone so this can help you feel<br />

safer as you will always know who is at the door<br />

• A decreased risk of falls as you don’t have get up and try<br />

and rush to the door before the person leaves<br />

• You have complete control over who comes into your home<br />

Several of our Members have said they tend to leave their<br />

door unlocked so they don’t have to get up to unlock it to let<br />

people in. This is obviously very unsafe. With this system,<br />

they can always keep their door locked.<br />

Things to consider with this system:<br />

• A good Wi-Fi network is required<br />

• The smart device can be either IPhone or Android as there<br />

is an App for both<br />

• The remotes for the door strike are quite small, but can<br />

be switch-adapted if required, allowing someone with<br />

decreased hand function to operate it<br />

• The door strike works at between 3-5 metres from the door,<br />

however if a longer range is required a hardwired system<br />

can be installed<br />

If you are interested in considering this or any other<br />

assistive technology options such as computer access,<br />

environmental controls or communication aids such as<br />

phone access, please contact our Occupational Therapy<br />

department on 9365 4888.<br />

Funding may be available to cover the cost of the<br />

equipment, subject to your eligibility.<br />

Do you want to receive 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 and the <strong>Bulletin</strong> magazine online.<br />

Just email bhavna.jagtiani@mswa.org.au or call 6454 3114<br />

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

<strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong> | 17

Help us make a difference<br />

in 2017!<br />

<strong>MSWA</strong> holds a number of events throughout the year. All funds raised enable <strong>MSWA</strong> to provide support and services<br />

to people living with MS and other neurological conditions in Western Australia. Help us make a difference by joining<br />

us at one of our many events - you can volunteer or take part!<br />

18 March 18 June 7 April<br />

Night Ride<br />





for<br />

Friday 8 April 20<strong>16</strong><br />

6 May<br />

MS BRIDGES NIGHT RIDE_<strong>16</strong>_DL_v2.indd 1<br />

31 May 24 August<br />

5/01/<strong>16</strong> 4:04 PM<br />

World MS Day<br />

Dinner Auction<br />

Date<br />

Saturday, 18 March 2017<br />

Sunday, 18 June 2017<br />

Saturday, 7 April 2017<br />

Saturday, 6 May 2017<br />

Thursday, 24 August 2017<br />

Event<br />

Albany Swim This is an amateur swimming event where teams compete to swim the<br />

longest distance in a set ten hour period.<br />

Step Up A unique vertical challenge to the top of Central Park.<br />

Do you have what it takes to run 1,103 steps to the top?<br />

The Night Ride will take you on a magical, moonlight ride through the streets of Perth.<br />

The Rotary Team Challenge offers you the opportunity to participate in an exciting<br />

team event that takes you through the picturesque Western Australia countryside along a<br />

heritage trail that follows the path of the Eastern Railway that formerly linked Fremantle<br />

to York in the late 1880s.<br />

Dinner Auction It’s time to get dressed up and bid on some fabulous auction items at<br />

our annual Dinner Auction. From sports memorabilia to travel packages, there will be<br />

something for everyone.<br />

(08) 6454 3131 events@mswa.org.au mswa.org.au<br />

18 | <strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong>


WHO CARES?<br />

KAREN BROWN, <strong>MSWA</strong> COUNSELLOR<br />

The question of when someone becomes a ‘carer’ is often<br />

difficult to define for many individuals and in fact the<br />

community. In my role as a group facilitator I often take the<br />

question ‘Who is a Carer?’ to my Carer Support Groups.<br />

The definitions that arise are as uniquely diverse as the<br />

attendees themselves. However, at one session, one of<br />

the group members simply stated “Someone Who Cares”.<br />

This uncomplicated description gives the often emotionally<br />

confronting label of ‘carer’ a whole new meaning.<br />

Someone may become a carer practically overnight after<br />

a diagnosis of MS or it might happen gradually as the<br />

condition progresses and they are required to provide more<br />

care and support.<br />

The course of multiple sclerosis is unpredictable resulting<br />

in many people being minimally affected, whilst others may<br />

experience more frequent relapses leading to varying levels<br />

of disability. This can lead to MS families, and at times their<br />

friends, finding that their role and relationships may change.<br />

They may begin by offering emotional support, advocacy, and<br />

general assistance to enable a person to live independently.<br />

Over a period of time, family and friends may be called on<br />

to provide additional aid in the form of physical support and<br />

personal and/or health care assistance.<br />

Carers, and the people they care for, are as diverse as the<br />

rest of the community and can be called upon at various<br />

ages or stages of life. They can range in age from children<br />

through to seniors and come from a diverse range of cultural,<br />

linguistic and religious backgrounds. Other factors such as<br />

gender, sexual identity and socio-economic circumstances all<br />

contribute to the uniqueness of each situation.<br />

Carers can provide care on a part-time or full-time basis, for<br />

a short term or throughout the life of the person they care for<br />

and may be a spouse, friend, child, parent or sibling. All these<br />

circumstances, and the severity of MS symptoms, influence<br />

whether they identify themselves as carers and access<br />

support services for themselves. <strong>MSWA</strong> provides a range of<br />

supports in the home, residential respite options, counselling,<br />

a monthly carer support group, carers camps, and access to<br />

several of our services; helping to reduce the ongoing strain<br />

experienced by long term carers.<br />

The Western Australian Carers Recognition Act 2004 defines<br />

a carer as a person who provides ongoing care, support and<br />

assistance to a person with a disability, a chronic illness<br />

(which includes mental illness) or who is frail. They do this<br />

without receiving a salary or wage for the care they provide.<br />

Caring is one of the most significant forms of unpaid work in<br />

the community and is integral to WA’s aged, disability, health,<br />

mental health, and palliative care systems. Family members<br />

and friends provide the bulk of this care, which for a carer<br />

can be well over the demands of a full-time job. WA was the<br />

first Australian jurisdiction to extend legal recognition<br />

to carers with the enactment of the Carers Recognition<br />

Act in 2004. You can view the Carers Recognition Act,<br />

Carers Charter and other relevant documents online at<br />

https://www.dlgc.wa.gov.au.<br />

At <strong>MSWA</strong> we recognise that many people do not formally<br />

identify themselves as carers, despite the extensive support<br />

and assistance they provide to a family member or friend.<br />

However, the role of caring for a person with MS is complex<br />

with a multitude of personal, cultural and practical influences.<br />

Furthermore, the experience of an MS diagnosis and its<br />

often unpredictable impact can add an additional dimension.<br />

Therefore, whether you consider yourself a carer or do not<br />

want to be labelled as such, possibly Someone Who Cares<br />

may be a term that you can relate to.<br />

If you are a carer and would like to learn more<br />

about <strong>MSWA</strong> supports and how we can help please<br />

telephone 9365 4888 and ask to speak with a Counsellor<br />

or Welfare Officer.<br />

<strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong> | 19

Anita’s story<br />

20 | <strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong>

Anita Gamba has had a very interesting life so far.<br />

She has worked as both an accountant and quantum<br />

physics teacher, she loves to paint and write and she<br />

has raised her family in both Australia and the US.<br />

In 1989, Anita was diagnosed with MS.<br />

There was little support in Australia at that time so in order to learn more, she<br />

gave up her job and moved her family to the US.<br />

“America in 1990 was still pretty unknown territory for Australia, and I’ve got to<br />

tell you it was the biggest culture shock I’ve ever had,” she said.<br />

The new-age community in the US taught her about holistic food, mindfulness<br />

and meditation, which she now teaches weekly in Perth.<br />

Within five years, she found many of her symptoms – including loss of vision,<br />

difficulty speaking and impaired cognitive abilities – had dramatically improved<br />

and she was once again able to do daily tasks.<br />

But after the effects of the 2008 Global Financial Crisis, Anita eventually had to<br />

return to Perth.<br />

“I landed on my mum’s back door and said ‘here I am’,” she said.<br />

“I spent most of the first year in a foetal position on mum’s spare bed crying, but<br />

then I found <strong>MSWA</strong>, and what a great organisation that is.<br />

“<strong>MSWA</strong> allows me to be independent and in control, so I can give back to the<br />

community. Now I teach other people meditation, and I’m just delighted to be<br />

able to pass that on.<br />

“The people at <strong>MSWA</strong> are experts at what they do. I can’t say enough about<br />

Rina, in the physio department, she’s just gone above and beyond to get me the<br />

services I need.<br />

“I overlay their advice and their expertise on top of positive thinking and<br />

meditation, because that’s who I am.”<br />

Through the NDIS, Anita has also been able to access support workers to<br />

maintain her independence, get some home modifications and a manual<br />

wheelchair.<br />

“Being able to choose my own carers, choose the functions, organisations and<br />

activities I want to be involved in is just priceless.<br />

“<strong>MSWA</strong> and the NDIS have given me the freedom and the independence to be<br />

able to explore and do the things really important to me.<br />

“They enrich my life and allow me to maintain my sense of dignity,” she said.<br />

Anita features in our current brand campaign. To see the<br />

advertisement that features Anita, visit our Facebook page<br />

at facebook.com/mswa.org.au<br />

<strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong> | 21





On 1 November <strong>MSWA</strong> held an Employment Forum at<br />

North Beach Community Centre. This forum, presented by<br />

Joshua Boyes, Lawyer at Maurice Blackburn, was open to<br />

all Members and their support persons. There was a great<br />

response from Members with registrations reaching capacity<br />

in just a few days!<br />

The forum, which was targeted towards those who are<br />

currently working or who have stopped working due to their<br />

MS, aimed to provide Members with a greater understanding<br />

of their legal rights in relation to employment, superannuation<br />

and disability.<br />

Joshua shared with us his knowledge and expertise<br />

discussing issues such as disclosure in the workplace,<br />

stopping and starting work, as well as travel insurance and<br />

disability claims. He also covered the topic of superannuation<br />

benefits, specifically the claiming of a disability lump sum or<br />

pension under a superannuation fund.<br />

Some key points that Joshua left the group with:<br />

• Be aware of superannuation entitlements<br />

• Keep statements and check your insurance<br />

• Planning for the future will give you optimum financial security<br />

• Get advice before ceasing work or changing employers.<br />

Make sure you don’t lose your cover!<br />

It is important to keep informed of your rights as well as the<br />

services available to you. For further legal information, please<br />

contact Maurice Blackburn on 1800 196 050 who offer some<br />

free advice for our Members. Or if you would like information<br />

on the OT services at <strong>MSWA</strong>, please telephone 9365 4888.<br />

To anyone who may be interested, there will be another<br />

Employment Forum planned for early next year. If you would<br />

like to attend, please contact Sarah Lorrimar on 9365 4858<br />

or Sarah.Lorrimar@mswa.org.au<br />

Employment FAQs<br />

Q: Do I have to disclose my MS to my employer?<br />

A: You do not have to disclose your diagnosis to your employer<br />

unless your symptoms have the potential to create an unsafe<br />

workplace for you or your colleagues.<br />

Q: Can I be fired for having MS?<br />

A: Generally, no. Disability discrimination law prevents employers<br />

from dismissing, passing over, demoting, reducing pay or any<br />

other less favorable treatment because of a disability. The one<br />

major exception to this rule is if you can no longer perform the<br />

inherent requirements of your role.<br />




For those using aids or equipment, you will be familiar with the<br />

benefits they bring you such as greater independence, energy<br />

conservation and improved safety. However, what you may not<br />

know is exactly what to do if adjustment, maintenance and/or<br />

repairs are required. Here are some tips and reminders:<br />

• When you receive your equipment, ensure you make a note<br />

of the supplier and who is responsible for repairs (it might be<br />

yourself, the supplier or the hospital)<br />

• Note when the equipment requires any regular maintenance<br />

and servicing and keep a reminder in your calendar or diary<br />

to prompt you<br />

• If the equipment was funded through a specific grant you will be<br />

responsible for the cost of all repairs and ongoing maintenance<br />

• Monday - Friday there is an <strong>MSWA</strong> Occupational Therapist<br />

(OT) in the Wilson office who can answer any queries<br />

you may have regarding repairs and/or maintenance and<br />

where to go for repairs, depending on how the equipment<br />

was funded. The OT can also make minor adjustments<br />

and modifications for those who can attend Wilson, or<br />

recommend an alternative<br />

• If the equipment was funded through the Community Aids<br />

and Equipment Program (CAEP) at your local hospital,<br />

contact will need to be made with the CAEP team to organise<br />

repairs as required<br />

• If you live in a WANDIS or NDIS area, your plan should<br />

include equipment you currently use, and equipment repairs<br />

and maintenance will be carried out through these schemes.<br />

Please note only primary equipment will be funded for repairs<br />

and maintenance.<br />

If you have any questions, please contact the <strong>MSWA</strong><br />

Occupational Therapy department on 9365 4888.<br />

22 | <strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong>

HEALTH<br />



Wound Awareness<br />

Thanks to the December edition of The Australian Women’s<br />

Weekly I came across this great resource! ‘Wound Aware’ see<br />

the website at http://www.woundaware.com.au/.<br />

Basically, there is some great information about the types of<br />

wounds you should discuss with your health care professional<br />

as they may need treatment and/or investigation.<br />

Signs to look for are:<br />

• Pain and heat; any wound that is red, swollen, hot to touch<br />

and/or painful. These signs could indicate infection and you<br />

should see your GP.<br />

• Odour; wounds with a strange or unpleasant smell.<br />

Once again this could indicate infection or need further<br />

investigation.<br />

• Excess fluid; any wound with a discharge of thick, yellowish fluid.<br />

• Slow healing wounds; any wound taking longer than a month<br />

to heal.<br />

Any of these signs should be discussed with your GP; there are<br />

several reasons why these signs can occur including infection,<br />

the presence of a chronic condition such as poor circulation or<br />

diabetes etc. Speak to your GP and they can review the wound<br />

and recommend treatment.<br />

Shingles<br />

Shingles is caused by the same virus responsible for<br />

chickenpox. An attack occurs because of a reactivation of the<br />

virus, which remains in the nerve cells of the body after an<br />

attack of chickenpox. Fortunately, it is rare to have more than<br />

one attack of shingles.<br />

Anyone who has had chickenpox can develop shingles. People<br />

who have never had chickenpox can catch the virus from<br />

another person with shingles. A person who has never had<br />

chickenpox, but comes into contact with a case of shingles,<br />

would develop chickenpox (not shingles).<br />

Shingles is a skin rash which is painful, has blisters, and usually<br />

appears on one side of the face or body. The rash forms its<br />

characteristic pattern because the virus works down the nerves<br />

that branch out from the spinal cord; the chest and lumbar region<br />

are most commonly affected. It usually lasts for 10 – 15 days.<br />

Tender, painful skin, tiredness, headache and photophobia<br />

(sensitivity to light) may occur two to three days before the<br />

skin turns red and breaks out in tiny fluid-filled blisters.<br />

The fluid in the blisters contains the virus. The virus can be<br />

spread by direct contact with the lesions or by touching any<br />

dressings, sheets or clothes soiled with discharge from the<br />

spots. Is important not to get this fluid near your eyes.<br />

Treatment with anti-viral drugs is most effective within three<br />

days of the rash appearing. Your GP and pharmacist can help<br />

with advising on managing the symptoms. You may require<br />

some pain relief.<br />

Some people experience neuralgia (nerve pain) following an<br />

attack and your GP can prescribe medications to manage this.<br />

Vaccines are available for people aged over 50 and it’s free on the<br />

National Immunisation Program for people aged 70 – 79 years.<br />

Read more at: https://www.betterhealth.vic.gov.au/<br />

health/conditionsandtreatments/shingles<br />





From 1 July 20<strong>16</strong>, in line with the National Disability Insurance<br />

Scheme Saving Fund, there are now additional medical reviews<br />

of Disability Support Pension (DSP) customers over 35 years of<br />

age. These reviews will be aimed at those DSP customers who<br />

are most at risk of not meeting the current eligibility criteria<br />

and who may have the capacity to work, or be retrained for<br />

work, for 15 hours or more per week within the next two years.<br />

Customers selected for a DSP review will have a comprehensive<br />

review of their medical qualification for DSP. DSP customers<br />

whose DSP was granted on “manifest grounds under current<br />

manifest rules” meaning people who qualified for a DSP after<br />

being assessed as “clearly and obviously meeting all DSP<br />

eligibility criteria”, and people working in Australian Disability<br />

Enterprises or under Supported Worker Systems will be<br />

excluded.<br />

The reviews started on 1 July 20<strong>16</strong> and will be in place for<br />

three years.<br />

If you have any concerns or need information regarding<br />

the changes to the Disability Support Pension contact<br />

the <strong>MSWA</strong> Social Welfare Department on 9365 4888.<br />

For additional information regarding DSP reviews contact:<br />

Department of Human Services Ph: 132 717<br />

Welfare Rights & Advocacy Services Ph: 9328 1751<br />

<strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong> | 23



As reunions go, it was small. Just three of us, old friends from<br />

school days. I met Julie when I started at a new school in<br />

grade five. I was shy and frightened of the teacher who was<br />

loud and sarcastic. I noticed Julie on about the third day of<br />

class, when the teacher cruelly mimicked her nervous giggle.<br />

I’d seen how her face turned red and tears came to her eyes<br />

and I cried inside with her.<br />

At recess, I went and stood next to her on the edge of the<br />

playground, and we tentatively began to talk. Our friendship<br />

lasted through high school and teachers college, and we<br />

were bridesmaids at each other’s weddings. She married my<br />

husband’s best friend. In time, marriage met its sad demise,<br />

and my contact with Julie dwindled.<br />

I met my other friend, Kate, on the first day of high school. She<br />

and I both ended up in the Secretary’s office unable to find<br />

our classroom. I quietly admired her fashionably long hemline<br />

and granny sandals. It was 1975 and this was considered the<br />

latest fashion, at least in Albany. In a fortuitous coincidence,<br />

we were sent to the same class. Kate and I were bosom<br />

buddies through high school, but we drifted apart afterwards.<br />

Julie and Kate both came to my fiftieth birthday party a few<br />

years ago and we renewed our friendship, but by then Julie<br />

lived in the country and Kate and I were busy with our separate<br />

lives so we were lazy about organising meetings. Finally, a<br />

month ago I sent an email around and a date was found.<br />

There is something wonderfully comfortable about renewing<br />

old relationships, even if so much time has passed since<br />

those intense adolescent friendships. Back then we were<br />

closer than many marriages. We shared everything: our<br />

dreams, our desires, and our disasters. We spent hours every<br />

day together and told each other everything. We danced to<br />

the same music, and wore the same clothes. I remember an<br />

exciting trip to Perth with Kate at the age of fifteen, where<br />

we bought matching long cheesecloth dresses and platform<br />

soled shoes. (Remember, I told you, it was 1975.)<br />

Our reunion was at Kate’s house, an oasis in the city, lush<br />

with citrus trees and other food plants. We sat around the<br />

pond that used to be a pool, and watched a lazy frog jump<br />

onto a lily-pad as we caught up on our histories and heard<br />

about the trials and triumphs of the last twenty years. We<br />

wondered about the whereabouts of other schoolmates and<br />

cringed about old crushes. Kate kindly didn’t mention the<br />

several months when I had been desperately in love with her<br />

older brother, but maybe it was only memorable in my mind.<br />

We shared stories about our children, celebrating their<br />

successes and commiserating over the challenges. I’m sure<br />

we were all furtively comparing how we’d withstood the<br />

ravages of time – I know I was. Middle age has granted us<br />

the confidence we yearned for as teenagers and, along with<br />

the help of a little hair dye, we all look fabulous in my opinion.<br />

I’ve made many friends in the years since high school, and<br />

lost a few too. Some were friends attached to a particular<br />

situation, like the parents of my daughter’s friends when she<br />

was in primary school. When she went to a different high<br />

school than her young buddies, both of us found new friends.<br />

Then there were the ones who moved away, and though we<br />

tearfully promised to keep in touch, once the tears had dried<br />

it didn’t seem so important any more.<br />

There are also friends who have shared the harder times<br />

in my life. The friend who I turned to when alone after my<br />

marriage separated, only to support her through her own<br />

difficult divorce a couple of years later. We go out for a movie<br />

and a drink every now and then. And there are friends I have<br />

met through my journey living with MS. We have a shared<br />

history that is unique to us, and is continuing to evolve. These<br />

friends have an important role in my life and I am grateful for<br />

them.<br />

But nothing will quite replace the friends who shared that<br />

awkward adolescence with me. They saw me at my clumsiest<br />

worst and my most glittering best. It’s amazing that after so<br />

long apart it took only a few minutes to fall back into the same<br />

patterns of conversation that we had as giggling teenagers, all<br />

talking at the same time and finishing each other’s sentences.<br />

As we planned our next reunion, I foresaw stretching out into<br />

the future a long line of such gatherings. I imagined us sitting<br />

around Kate’s pond, white haired and stooped with age,<br />

cackling over our cups of tea and cringing over old crushes.<br />

Maybe old age won’t be that bad after all.<br />

24 | <strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong>




Living in my own home, with the care that <strong>MSWA</strong> provided,<br />

was manageable. My children had married and moved out.<br />

My husband had died, so there I was, alone, and trying to<br />

keep the house maintained and looking ‘lived in’ as well as<br />

keeping myself tidy and continuing to live my purposeful life.<br />

<strong>MSWA</strong> sent someone each morning to help me prepare for my<br />

action-packed day and then they sent someone to assist with<br />

my evening rituals too. It was, I eventually admitted, more<br />

practical for me to move into a care facility and I found that it<br />

took a considerable amount of ‘self-talk’ to admit to myself,<br />

that I needed to relinquish the house that I’d spent decades<br />

telling myself that I simply had to have.<br />

The house is rented out now and the real estate agency has<br />

chosen a family to move in. I’m sure they’re comfortable.<br />

I’ve moved into a ‘care facility’- an aged care facility - and<br />

I am close to my children, the theatres, the wine bars, the<br />

galleries, the coffee shops, plus I get my washing done, my<br />

bed made and my meals cooked, and I am the youngest one<br />

here, excluding staff.<br />

I can have a normal amount of conversation and my life is very<br />

comfortable now that I no longer worry about lawn growing,<br />

lawn mowing, swimming pool chemicals, door-locking, and<br />

goodness knows what else filled my head when I was home,<br />

but so much of it, I’m sure, was problematic. Not these days.<br />

I haven’t anything to worry about.<br />

My sister Janine comes from Sydney each year and we enjoy<br />

each other’s company for a week or so. We could enjoy each<br />

other’s company for longer, I’m sure, but we don’t stretch it<br />

out any longer and usually find that a week is plenty long<br />

enough for us, as sisters, to manage, with all the tolerance<br />

that is needed and all the caring that I’ve become accustomed<br />

to being necessary and being provided by her (in her old age).<br />

This year, I couldn’t accommodate her at my place so we<br />

went to the <strong>MSWA</strong> respite unit at Australind (Bunbury) called<br />

Treendale. It’s a three-bedroom, two-bathroom unit with<br />

fully equipped kitchen, laundry, lounge room, dining room,<br />

courtyard and a staff of cleaners, carers, nurses, cooks or<br />

whatever else might be needed in an adjoining facility, which<br />

is connected by a corridor and a buzzer.<br />

Using the staff or communal dining facility was not compulsory<br />

so respite inhabitants are able to keep to their own timetable if<br />

they want, or are able to. Individuals are able, in another wing,<br />

to have private bedrooms/bathrooms and can stop there and<br />

be cared for, thus giving their regular carers a break.<br />

Families would be very well accommodated with every<br />

modern convenience at arm’s length in the unit. I thought it<br />

was an excellent set up and was even more impressed when<br />

the Manager gave Janine and me a tour of the entire facility<br />

and we saw what is accessible to permanent residents. I had<br />

inspected lots of places when I was moving out of my home<br />

and Treendale was not lacking anything.<br />

It was a proper holiday with sundowners (Gin o’clock), a pub<br />

lunch during the AFL final and daily trips to the supermarket<br />

on my new power chair to forage for the evening meal. We did<br />

almost nothing but we were busy doing it. It was such fun.<br />

We went to a winery one day for a degustation lunch. We<br />

were served a multitude of epicurean delights and were<br />

encouraged to sample different wines, which we did politely,<br />

and were so pleased to be taken home by the Maxi Taxi which<br />

had provided excellent service on our holiday.<br />

If you go to Treendale, the Bunbury wheelchair taxi<br />

service is very obliging. The taxi met the train at the<br />

station and drove us to the door on our arrival, and met<br />

the train to take us back to Perth. We had a great time<br />

and I was once again thankful for <strong>MSWA</strong>’s existence.<br />

<strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong> | 25




Improve your health by healing your attitude is a New Year<br />

resolution you can add to your list of promises, by learning<br />

how to meditate. Begin by fixing your thoughts on what is<br />

true, good and right. Think about things which are pure and<br />

lovely, and dwell on the fine, good things in others. Listen<br />

to your inner self because the outer world of circumstances<br />

shapes itself to the inner world of your thoughts. Meditation<br />

can heal your body.<br />

Sometimes it pays to take the long way instead of the quick<br />

and easy. If you have limited movement but can transfer<br />

safely, set your workstation up so that you must transfer<br />

in and out of your chair each day. Talk this over with your<br />

occupational therapist and settle on a routine which becomes<br />

part of your exercise program. If it is possible to sit less, then<br />

stretch more. If it is not possible, ask the physiotherapist for<br />

a wheelchair-friendly exercise program.<br />

Sometimes you just need to hear the right words said in a<br />

different way to adjust your attitude. Set up a whiteboard<br />

where you can write something meaningful to help you get<br />

up and going in the right direction of a morning. Quotes you<br />

have enjoyed don’t always have to be deep and inspirational,<br />

just meaningful to you. If you get easily frustrated, you might<br />

write “patience is a virtue”. Google it and you will find William<br />

Langland told us that little gem way back in 1360. It has<br />

withstood the test of time.<br />

These quotes are still meaningful to us today because they<br />

inherently make sense to us, but are so easily forgotten. Here<br />

is another. “If you think you are beaten, then you already are.<br />

If you think you dare not, then you will not. If you think you’ll<br />

lose, then you’ve already lost. If you think you are outclassed,<br />

then you are.” Google this and you will find that these are<br />

the immortal words of the poet Walter Wintle, from his book<br />



There are all kinds of silences and each of them means a<br />

different thing.<br />

There is the silence that comes with morning in a forest, and<br />

this is different from the silence of a sleeping city. There is<br />

silence after a rainstorm, and before a rainstorm, and these<br />

are not the same. There is the silence of emptiness, the<br />

silence of fear, the silence of doubt.<br />

Thinking, published in 1905 when Germany and Britain were<br />

in the middle of a naval-building race. The quote has an<br />

underlying cause, but also contains something of substance<br />

for your whiteboard.<br />

Success therefore begins as a state of mind, and you have to<br />

be sure of yourself before you can ever win a prize. “Sooner<br />

or later the person who wins is the one who thinks they can”,<br />

and we can thank Walter Wintle once again for another little<br />

gem. But you also have powers you never dreamt of and do<br />

things you never thought you could, because there are no<br />

limitations to what you can expect. It is all in your own mind.<br />

Channelling Walter Wintle is another successful man of his<br />

time, Henry Ford, who said “If you think you can do something,<br />

you are right. If you think you cannot, you are also right.”<br />

According to Ford, all limitations are ultimately self-imposed.<br />

The consolation prize however, Leo Burnett tells us, is that<br />

“When you reach for the stars you may not get one, but you<br />

won’t come up with a handful of mud either.” Google is an<br />

unlimited source of quotes and it can be not only uplifting, but<br />

fun finding them.<br />

Finally make the decision to frown less and smile more. As<br />

part of your daily exercise routine take five big breaths and<br />

smile. Then think of six good things in your life. Don’t be afraid<br />

to give someone a compliment, or send a loving thought to<br />

that special someone. Spread the beauty. Of all the things we<br />

wear, a smile and good humour are the most precious.<br />

Resolve to live in such a manner that when people speak ill<br />

of you, no one will believe them (Plato). Remember, one of<br />

the greatest discoveries of our generation is that we human<br />

beings can alter our lives by altering our attitude of mind.<br />

Some people make the world special just by being in it. With<br />

the right attitude, you can be such a person.<br />

There is a certain silence that can emanate from a lifeless<br />

object as from a chair lately used, or from a piano with old<br />

dust upon its keys, or from anything that has answered to the<br />

need of a man or a woman, for pleasure or for work. This kind<br />

of silence can speak. Its voice may be melancholy, but it is not<br />

always so; for the chair may have been left by a laughing child<br />

or the last notes of the piano may have been raucous and gay.<br />

Whatever the mood or the circumstance, the essence of<br />

its quality may linger in the silence that follows. It is a<br />

soundless echo.<br />

26 | <strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong>





A $100-dollar ticket in <strong>MSWA</strong>’s Mega Home Lottery has<br />

turned Neville Biggins into a big winner! After having bought<br />

tickets for the past six years, Neville won the coveted first<br />

prize, a stunning $1.7 million, fully-furnished, luxury home in<br />

Hillarys and $500,000 cash.<br />

“I’m in a state of shock. I’d been out with my friends and we<br />

were watching the prize draw on the TV and my name came<br />

up and I just sat there and said, I don’t believe it, I’m sure<br />

that’s me. Then my little God-daughter, she flew through the<br />

door and did about six cartwheels and she said, it’s you, it’s<br />

you,” said Neville.<br />

“Even when I was driving down the road afterwards,<br />

I remember my Dad used to say to me, don’t count on it lad,<br />

don’t count on it. But it’s now been confirmed that this is what<br />

has happened and my life has changed.”<br />

As well as getting used to being the proud owner of a stunning<br />

home, Neville has the wonderful dilemma of deciding what to<br />

do with half a million dollars.<br />

Together with the $2.2 million first prize, <strong>MSWA</strong>’s Mega<br />

Home Lottery also gave away 8,350 prizes worth more than<br />

$5.1 million, including luxury cars, overseas holidays, TV’s<br />

and laptops.<br />

CEO Marcus Stafford said, “The <strong>MSWA</strong> Mega Home Lottery<br />

is a win-win situation. It’s great to see someone like Neville<br />

have his life changed forever. And we invest the proceeds<br />

from the Lottery in helping make the lives of people with MS<br />

and other neurological conditions better.<br />

“It’s the generosity of the people of Western Australia<br />

that let us carry out the work we do. So I’d like to<br />

personally thank everyone who bought a ticket. Whether<br />

you won a prize or you didn’t, you are helping to make<br />

a difference to the lives of people with MS and other<br />

neurological conditions.”<br />

<strong>MSWA</strong> OCEAN RIDE 20<strong>16</strong><br />

The seventh annual <strong>MSWA</strong> Ocean Ride took place on October 4<br />

and close to 1,400 participants turned up ready to ride for<br />

people living with MS and other neurological conditions.<br />

Participants were in high spirits as they enjoyed a scenic<br />

coast ride from Fremantle to Hillarys in either the 10km,<br />

30km, 50km, 70km or 90km rides. The event was a huge<br />

success, raising an impressive $250,000+ for <strong>MSWA</strong>, at the<br />

time of going to print!<br />

This year saw our highest fundraiser in Ocean Ride history<br />

return to put pedal to the metal once again. 25-year-old<br />

Michael Luca was diagnosed with MS in 2014 and first cycled<br />

in <strong>MSWA</strong> Ocean Ride that year raising $30,000 on his own.<br />

This year, Michael cycled in the 90km category and together<br />

with his family members and teammates, ‘No MSing Around’<br />

raised an amazing $13,<strong>16</strong>5. Team BGC and Team Troppo<br />

followed closely behind on $11,945 and $11,643 respectively.<br />

Michael said: “Mum and Dad are pretty much cycling novices;<br />

this was their first Ocean Ride. Mum fell down a few times<br />

during training but they had fun and there was a little bit of<br />

healthy competition between us, but it’s all in good fun.”<br />

The festivities continued after the race with plenty of activities<br />

and entertainment to keep the fun going. Riders enjoyed<br />

much needed leg massages while kids enjoyed the games,<br />

face painting and free fairy floss.<br />

Thanks go to our Events Team, our many volunteers and<br />

event sponsors for continuing to make the <strong>MSWA</strong> Ocean<br />

Ride a success.<br />

<strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong> | 27


UPDATE<br />


Ho! Ho! Ho! I hope you all have a Merry Christmas and Happy<br />

New Year! Wow! We are about to enter 2017 at full speed<br />

ahead, watch out, here we come. It’s a brand new year,<br />

which always holds new goals and opportunities for fresh<br />

beginnings. I trust this edition of <strong>Bulletin</strong> finds you all safe and<br />

well, while perhaps feeling a little bit heavier from all the good<br />

tidings that Christmas brings with it.<br />

It has been some months since I chatted with you last. There<br />

is always something that has happened or is about to happen.<br />

It amazes me how busy this role of Coordinator of Volunteers<br />

can be; I love the diversity that my job offers. I must say thank<br />

you to my Volunteers for making this a fantastic role. I enjoy<br />

working alongside each and every one of you and I always<br />

look forward to seeing you around the various locations and<br />

events along the way.<br />

Volunteering for me is all about the people, in some way,<br />

shape or form, whether it is volunteering directly with them<br />

or indirectly behind the scenes. Working in this industry is<br />

definitely all about the people, and I love working with the<br />

<strong>MSWA</strong> volunteers; you are my people! For this, and many<br />

other reasons I thank you all for what you do for <strong>MSWA</strong> and<br />

our Members and staff. You are all truly amazing and we don’t<br />

take any of you for granted.<br />

September saw another Members’ camp at Woodman’s Point.<br />

Unfortunately, I couldn’t attend however the Members and<br />

staff were fortunate enough to have two volunteers assisting<br />

throughout the four days. I would like to thank Rosalind, who<br />

is an old hand at these Members’ camps now, and a new<br />

recruit to <strong>MSWA</strong> and camps, Jacqueline. Jacqueline also<br />

travelled from Australind to join the Members in Coogee. I<br />

believe they had a wonderful time and the Members truly<br />

enjoyed their company and the assistance they provided. The<br />

staff were also thankful, as it allowed them to concentrate on<br />

the camp activities with the Members.<br />

I was lucky enough to go on the Carers Retreat in October<br />

to Busselton with Tess from the Occupational Therapy<br />

Department. This was a lovely experience and very different<br />

to a Members’ camp. It is important to acknowledge and<br />

celebrate our carers and give them the rest they deserve<br />

away from their caring role at home with their loved ones.<br />

This provides them with the opportunity to recharge their<br />

batteries to carry on their role.<br />

October also brought a very busy and extremely tiring family<br />

camp, especially for our staff. We didn’t have any volunteers<br />

for this camp, however staff, together with OT students,<br />

attended and worked well and truly above and beyond their<br />

duties and regular working hours. For them to do this involves<br />

volunteering, as they offer extra hours in a voluntary capacity.<br />

For any camp to run smoothly and be successful, it requires<br />

dedicated staff to block off a portion of their regular work<br />

week and home life to help. I would like to thank all the <strong>MSWA</strong><br />

staff and students who give time outside of their normal<br />

hours, as do the <strong>MSWA</strong> Management and Members as well.<br />

The Melbourne Cup was here, right on the knock of 1 November.<br />

This is a huge event for <strong>MSWA</strong> at Wilson and it takes a lot of<br />

time to organise; from the luncheon to the raffles and many<br />

sweeps around the building. The numbers keep increasing<br />

for lunch each year which makes the volunteers’ day in the<br />

kitchen just that little bit busier. Thank you Rath and Priya, it<br />

was an amazingly busy day and you deserved to put your feet<br />

up and have a rest. Our volunteer resident ‘bookie’ Sheila,<br />

organised all the sweeps and kept all the punters at bay and<br />

made a few of them very happy. It wouldn’t be Melbourne<br />

Cup without the fashion and this year Rosalind, one of<br />

our volunteers, won the Best Hat competition. I didn’t see the<br />

hat myself, but if anyone knows Rosalind, I can guarantee it<br />

was red.<br />

I missed our Melbourne Cup Lunch, as I was invited to the<br />

City of Melville Volunteer Resource Centre to celebrate<br />

International Volunteer Managers Day. I’d like to thank the<br />

City of Melville and their team, Renae and Sarah for putting on<br />

such a wonderful and relaxing event. Rachel Green, Director<br />

of The Emotional Intelligence Institute took the Volunteer<br />

Managers through a morning of self-care with a focus on<br />

mindfulness meditation. Can you believe I meditated in a<br />

room full of people, with my eyes closed while walking? I was<br />

amazed no one collided through this process.<br />

The Western Australian Symphony Orchestra (WASO)<br />

approached me with some complimentary tickets to an<br />

evening of ‘Stuart Skelton sings Wagner’ on 26 November.<br />

WASO wanted to acknowledge our well deserving volunteers<br />

and I’m happy to say nine of our volunteers took up this<br />

generous offer of double passes. They thoroughly enjoyed the<br />

opportunity.<br />

28 | <strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong>

The Members, Staff and Volunteers Christmas Party is well<br />

and truly over and done with for another year. The colour<br />

theme for this year was red and green with a touch of gold.<br />

For those who know me, you know I dressed accordingly to<br />

promote the colour theme. This time of the year gives me an<br />

excuse to prance around, dance and wave my magical ribbon<br />

as I go. I love these events and it is our way of celebrating<br />

with the Members and thanking you all for the year that has<br />

been and to recognise your time and effort.<br />

International Volunteers Day is celebrated on 5 December<br />

every year. Over the last few years I have taken a group<br />

of volunteers to the Government House Garden Party and<br />

this year was no exception. International Volunteers Day<br />

recognises the significant value that volunteers contribute to<br />

organisations all over the world. Many organisations wouldn’t<br />

be able to function at the level they do without people such as<br />

you. Thank you for your efforts and give yourself a pat on the<br />

back for a job well done!<br />

I always worry from article to article what I am going to write<br />

about each time. As I look back and start writing my article<br />

I am constantly surprised at how much has happened over<br />

the months. As I said at the start, a new year means new<br />

beginnings, and for some of my beautiful volunteers, they<br />

will be leaving us to venture off on another journey. I wish<br />

you well with your future endeavours. On the brighter side,<br />

volunteers leaving create a new beginning for others wishing<br />

to volunteer, so out of the loss comes another ray of sunshine.<br />

But of course, there are many of you who will be gracing us<br />

with your presence again which is wonderful to see.<br />

It is fantastic to see the number of volunteers who have<br />

been with <strong>MSWA</strong> for many years and the relationships<br />

and friendships that have been forged throughout this<br />

time. To all my volunteers, whether you have been with<br />

us for a short journey or a long journey, I would like to<br />

thank you for the road you have travelled with <strong>MSWA</strong> in<br />

20<strong>16</strong>. I wish you a safe, happy and prosperous new year,<br />

and I look forward to tackling 2017 together.<br />

Take care and bye for now,<br />

Dawn<br />

<strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong> | 29




Robert is Canadian by birth and was a chef when he was<br />

diagnosed in 1995. He has been a Member, volunteer and<br />

<strong>MSWA</strong> ambassador for many years, receiving the Commitment<br />

Award in 2006. He was also President of the Great Southern<br />

(Albany) Outreach Group for several years.<br />

Of late Robert has been even busier completing a degree in<br />

Social Work and trying out for the Paralympics as a sailor!<br />

Robert developed a passion for sailing and he and his crew<br />

began competing in earnest aiming for the Rio Paralympics.<br />

The highlight of their campaign for Robert was being able to<br />

return to his homeland, Halifax Canada, to compete. Whilst<br />

the crew didn’t make it through to the finals they gave it<br />

their all and thoroughly enjoyed their experience. This sport<br />

is expensive and without significant sponsorship, which<br />

Robert’s team didn’t have; opportunities are limited sadly.<br />

Congratulations Robert, we look forward to hearing more!<br />

Robert won the Albany Disability Sportsman of the Year in<br />

2015. He also has a dream; to start the AUS Sailing High<br />

Performance Academy to train people with physical disabilities<br />

to sail at a professional level.<br />

Anyone who has met Robert knows how positive he is and<br />

what a great ambassador for MS and <strong>MSWA</strong> he is, even when<br />

faced with challenges over the years.<br />

I think if you like to sail, WA and especially Albany,<br />

is a great place to seek out opportunities. I know our<br />

Bunbury Group always look forward to their quarterly<br />

Sail-Ability excursions!<br />




As you can see by the artist impression, <strong>MSWA</strong> is advancing<br />

another of our strategic footprint expansions. We have had<br />

a north metro services hub and supported accommodation<br />

facility planned for some time.<br />

We are very excited to update you on progress thus far. We<br />

have secured a large block in Butler and have had plans drawn<br />

up and submitted to the Wanneroo Council for approval. Once<br />

approval has been received we can set the timelines for this<br />

very exciting project.<br />

The two premises will be separate and we believe the designs<br />

for both are of a high standard and will deliver us a quality<br />

second to none outcome, benefitting our Members and other<br />

Clients in this busy and expanding region.<br />

The designs will provide user accessibility, the highest quality<br />

and will be aesthetically considered to blend into the Butler<br />

surrounds. It is a very exciting project!<br />

We are very fortunate at <strong>MSWA</strong> to have such huge success<br />

with our events and raffles and of course the Mega Home<br />

Lottery. Raising significant funds, along with some donations<br />

and grants, allows us the opportunity to realise our dreams<br />

and build such wonderful premises.<br />

Stay tuned for more updates in future <strong>Bulletin</strong>s.<br />

30 | <strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong>




‘Embrace the Shake’ is an activity group established within<br />

<strong>MSWA</strong> to provide opportunities for Members to participate in<br />

art and craft activities with the help of a resource staff person.<br />

The group is the brain child of Member Trudi Fay, who was<br />

looking for a craft group she could participate in despite<br />

having a tremor. We currently have three talented Members:<br />

Trudi Fay, Ros Harman and Sharon Heeley. We meet at Wilson<br />

Outreach every Monday between 10am and 12noon.<br />

The group allows Members to explore their creativity and<br />

attempt new skills, working with whatever physical abilities,<br />

challenges or limitations they may have, in a relaxed and<br />

accepting environment. Ideas for projects have come from<br />

Pinterest, craft books and the experience and imagination of<br />

Members of the group.<br />

1<br />

Excursion to the Art Gallery<br />

to see a picture made from<br />

coffee cups. This was<br />

the inspiration for a later<br />

project using bottle caps<br />

to make coasters and<br />

decorate a tray.<br />

2 Using baker’s clay to make Christmas ornaments.<br />

3<br />

4<br />

5<br />

6<br />

7<br />

8<br />

Marbling on china with nail polish.<br />

Making pictures with food colouring – ink blots,<br />

straw blowing, thumb prints, bubble pictures.<br />

Collage with<br />

torn tissue paper.<br />

Making sun catchers with<br />

beads, shells and sea<br />

glass.<br />

Excursion to Member<br />

Ros Harman’s house to<br />

plant cacti in pots.<br />

Making fridge magnets<br />

from toy animals.<br />

9<br />

10<br />

11<br />

12<br />

13<br />

14<br />

15<br />

Using the laminator to<br />

make book marks with<br />

autumn leaves.<br />

Making mosaic decorations<br />

with old CDs.<br />

Decoupage wooden tray.<br />

Mod Podge on canvas<br />

(this activity put Sharon<br />

in the zone).<br />

Swedish paper heart<br />

baskets (too hard! -<br />

according to Ros).<br />

Woven paper baskets with newspapers.<br />

Bottle caps and resin<br />

decorated coasters<br />

(a bit of a disaster) and tray<br />

(which was fabulous).<br />

Thanks to Sharon who turned<br />

her whole neighbourhood<br />

into alcoholics.<br />

The aim for this group is not to emphasise the end products, but to challenge how far each Member can go with their<br />

abilities, whilst enjoying each other’s company within the group.<br />

Please come and join us if you are interested in this group.<br />

<strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong> | 31


Regional Round Up<br />

The latest<br />

news from<br />

the South<br />

West<br />



As you may know <strong>MSWA</strong> has purchased land in Halifax on<br />

the outskirts of Bunbury, and started building a purpose built<br />

home for our Bunbury Outreach Group and our SW Health<br />

team, their services and programs.<br />

The project has long been awaited and very exciting for<br />

Members and staff alike and we are very excited about the<br />

impending move; as the <strong>Bulletin</strong> hits your letterbox we should<br />

have received the keys and be settling in!<br />

The photo shows the progress to date, late November, but the<br />

next <strong>Bulletin</strong> will show you some great brag shots both inside<br />

and out! Farnell Construction, a local company, and Alec<br />

Whyte and Associates, our architects, have done a great job<br />

under the watchful eye of Andrea Taylor, the project manager.<br />

We are very fortunate at <strong>MSWA</strong> to have the financial capacity<br />

to buy and build new premises. Our highly successful Mega<br />

Home Lottery, various events and some donations have seen<br />

us realise one of our key strategic footprint dreams! This<br />

amazing centre presents many new possibilities for our local<br />

Members, both now and into the future. The future expansion<br />

of the NDIS into the area will also see these opportunities<br />

extended to people with other neurological conditions.<br />



Early in October I travelled to Manjimup with Gerald O’Sullivan,<br />

our Social Welfare Officer based in Bunbury. The purpose<br />

of our trip was to meet with Members living in the area to<br />

discuss and develop a new and ongoing peer support group<br />

in the Southern Forests Region. This region encompasses<br />

Manjimup, Pemberton and Walpole but the group also warmly<br />

welcomes any Members in surrounding areas such as<br />

Bridgetown, Balingup and Donnybrook.<br />

This initial meeting was an informal opportunity for Members<br />

to meet new people living with MS as well as reconnect<br />

with ones they had met in the past. As the group introduced<br />

themselves, they shared a bit about their own experience of<br />

MS, which included the stories of a friend and carer who also<br />

attended. The group then brainstormed ideas on what they<br />

wanted the group to do and suggestions on the way the group<br />

would run.<br />

The ideas put forward by the group were to have a casual<br />

setting where Members could get together for support and<br />

information. This could be achieved by having occasional<br />

guest speakers such as staff from the <strong>MSWA</strong> team; perhaps<br />

a Nurse, Counsellor or NDIS team representative, to provide<br />

information in between meetings<br />

where the group met to have<br />

a more laid back get together<br />

amongst themselves.<br />

Along with some group guidelines,<br />

a group purpose was developed.<br />

The group purpose decided by<br />

the Southern Forests MS Support<br />

Group reads, “Our support group<br />

provides a friendly, caring and<br />

relaxed space to meet, for people living with MS and their<br />

support persons, in the Southern Forests Region. It provides<br />

an opportunity to share experiences, information, support as<br />

well as some ‘me’ time”.<br />

It was great to see people come together and show<br />

an interest in establishing an ongoing support group,<br />

however the group is still in its early stages and we are<br />

hoping to expand. If you are interested in joining, please<br />

contact Sarah Lorrimar at Sarah.Lorrimar@mswa.org.au<br />

or Gerald O’Sullivan at Gerald.OSullivan@mswa.org.au<br />

32 | <strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong>



On Thursday, 3 November <strong>MSWA</strong> Treendale Gardens<br />

Residential and Respite had a special visit by the Minister<br />

for Planning, Disability Services, the Hon Donna Faragher;<br />

Bunbury MLA, John Castrilli and <strong>MSWA</strong> CEO, Marcus Stafford<br />

who dropped in to view the facility and chat to residents,<br />

clients and staff.<br />

They enjoyed spending time looking around both the<br />

residential and respite buildings and our flourishing vegetable<br />

garden and then shared a delicious afternoon tea prepared by<br />

our wonderful cook, Belinda.<br />

Treendale residential currently has ten residents who are<br />

enjoying the support of our volunteers and the newly appointed<br />

Recreation Officer, Angela who have been organising games,<br />

quizzes and other activities as well as assisting in the<br />

vegetable garden.<br />

Respite has had a busy year, with our regulars and new<br />

visitors enjoying their stay whilst catching up with old friends<br />

and making new ones.<br />

We still have places available most times in both respite<br />

and in the Holiday Unit in Treendale so please feel free<br />

to contact us on 9725 9209 for information and to make<br />

a booking. We would love to see you, remember special<br />

rates apply for Members!<br />

Australind is a lovely place to visit and the nearby tourist<br />

attractions and shopping centre provide added appeal.<br />

Back row:<br />

John Castrilli MLA,<br />

Hon Donna Faragher MLC<br />

(Minister for Disability),<br />

Marcus Stafford<br />

Front row: Kate Gild,<br />

Lyn Stening, Jan Davies,<br />

Di Kyrwood, Judy Whitfield,<br />

Wayne Harris; residents of<br />

<strong>MSWA</strong> Treendale Gardens.<br />



The Bunbury Outreach Group received an invitation<br />

from the owners of Chalbury Park B&B in Harvey,<br />

(www.chalburypark.com.au), to have tea in their<br />

beautiful gardens.<br />

Karen and Jeff were the warmest of hosts ready to<br />

greet us as we arrived in cars, buses and gophers.<br />

The weather was perfect for sitting outdoors and<br />

chatting over tea and Karen’s delicious home baked<br />

treats. Brett provided some entertainment with his<br />

ukulele and some upbeat tunes.<br />

Many took the opportunity to explore the expansive<br />

grounds. It was a lovely morning out and we cannot<br />

thank Karen and Jeff enough for making us so welcome.<br />

<strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong> | 33



As part of our ‘World Trip’ for 20<strong>16</strong>, Wilson Outreach celebrated<br />

DAWN the Olympic BURKE, Games VOLUNTEER in style as we COORDINATOR<br />

were right there in Rio!!<br />

Perfect timing for us as a group to be ’visiting’ this amazing<br />

city at that special time. As well as decorating the Wilson<br />

Atrium with as much colour and feathers as we could find,<br />

we were very active participating in our very own Olympics.<br />

Our Members got behind our Olympians and cheered them on<br />

dressed in lots of green and gold as our photo so wonderfully<br />

shows! The highlight of our month in Rio was the Carnivale on<br />

the last week. This was exceptionally colourful and we enjoyed<br />

beautiful food prepared by Giselle, with both Members and<br />

staff joining in the fun and festivities.<br />

Our last ‘trip’ away for this year was Hawaii; we will share the<br />

highlights of that with you early in 2017.<br />

With the warmer weather in the last few weeks the Outreach<br />

group has been able to get out and about which is always a<br />

great feeling, particularly this year after having such a long,<br />

cold winter. Groups visited Kings Park in September when the<br />

wildflowers were in full bloom as well as going back to Tomato<br />

Lake, which has been a favourite place to visit for many years.<br />




There’s always something going on here at MDH!<br />

Recently Kate, a regular resident, thought we needed some<br />

“Secret Women’s Business”. Instead of buying us thank you<br />

chocolates, Kate chose the healthier face mask pamper<br />

option! Whilst the male guests declined her kind offer (can’t<br />

think why), the other residents and staff embraced the<br />

opportunity! Take a look at the photo!<br />

MDH has had a great year, we have had some refurbishment<br />

and lots of our regulars staying with us as well as some<br />

welcome new faces.<br />

SOUTHSIDE NEWS NOVEMBER 20<strong>16</strong><br />


Our big news at Southside was a win in the recent <strong>MSWA</strong><br />

Mega Home Lottery. We had 7 (tickets) syndicates and ‘D’<br />

ticket (with 20 members) won a case of 12 bottles of Merlot<br />

wine!! Next time…the house!<br />

With the festive season just around the corner, many of our<br />

Members and volunteers are busily making decorations for<br />

the Christmas tables. Very creative!<br />

Judy, Barry and Chad are all back with us after illness or<br />

operations. Now we wish Helen a speedy recovery!<br />

We are very lucky to have such beautiful picnic spots so close<br />

to Wilson so popping out for morning tea is very easy. One<br />

group had a lovely walk around Sanctuary Waters park which<br />

was thoroughly enjoyed by everyone, and seeing the new<br />

born ducklings enjoying the beautiful sunshine.<br />

If you are reading this and would like to know more about<br />

activities happening within our Outreach programme,<br />

which believe me are very varied, please don’t hesitate<br />

to call my direct line 9365 4830 or call reception on 9365<br />

4888. We can discuss options of which day may suit<br />

you better as we do have places available and with the<br />

new year approaching you could be looking forward to<br />

joining us in 2017!!! You just never know where we will<br />

be ‘travelling’ to!<br />

If you are considering an out<br />

of home respite break for<br />

your loved one – perhaps you are travelling on your own or just<br />

need a short break from your caring role, then please consider<br />

MDH. Located in City Beach we pride ourselves on a homely<br />

environment. Our <strong>MSWA</strong> staff are trained and experienced in<br />

supporting people with MS and other neurological conditions<br />

from moderate to high care needs.<br />

Please give me a call on 9385 9574 to discuss MDH and<br />

arrange a visit and/or booking.<br />

While on this topic, we know that Sue Shapland has had<br />

a challenge with her hand. We hope it heals up soon, Sue!<br />

(A thumbs up, as it were!)<br />

Our Physio Sharon is back from three weeks of travel in Japan<br />

with a couple of friends. By the sounds of it she thoroughly<br />

enjoyed the experience. “Ohisashiburi, Sharon” … good to<br />

see you again. How about a slide show soon?<br />

Southside send our best wishes to all for a safe and<br />

happy festive season; take care and see you next year!<br />

34 | <strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong>




Our Tuesday Outreach group at Rockingham is well and truly<br />

up and running as you can see from these photos taken at our<br />

Melbourne Cup gathering. It was encouraging to have some<br />

extra Members stay back after their physio, who hadn’t paid<br />

us a visit up until then! The group has been building slowly<br />

and the idea is to now get the word out there so we can build<br />

it up even more, ready for the start of the New Year!<br />

At this stage, we only offer a morning tea, with the potential<br />

for a lunch being provided depending on demand and when<br />

the numbers grow a little more.<br />

Several Members have been encouraged by the games on<br />

offer saying “it’s a long time since we’ve had someone to play<br />

scrabble with” or “we’ve had someone spend some time with<br />

us showing us how to play a new game”. Others have asked<br />

for more craft activities which was great timing for the table<br />

decorations for the Rockingham Christmas Party!<br />

Please pass on the word to any Members you may know living<br />

in the southern corridor who you think would benefit from<br />

socialisation which, as we already know, plays a huge part in<br />

one’s wellbeing.<br />

Our long-standing Friday group known as ‘Southside’ can, on<br />

any Friday, have as many as 20 Members plus volunteers and<br />

staff, even after moving into bigger premises it can get quite<br />

tight in the Centre. With the Tuesday group being new, it’s<br />

smaller and that could make it easier for some. One Member<br />

has already said that she feels like the new kid on the block<br />

and is more than happy to be in a new group as it starts out!<br />



Hooray, winter is over! We have celebrated by filling our raised<br />

garden beds with colourful flowers. These will brighten up our<br />

outdoor area, which we are hoping to use more with the mild<br />

weather (before it gets too hot again!).<br />

During October, both of our groups, Eastside and Northside,<br />

celebrated their anniversary. Eastside met at the Osborne<br />

Park Hotel for a restaurant lunch, with a private room just<br />

for us! Everyone enjoyed their meals and had a good time;<br />

special thanks to Sue Shapland and Gail Palmer for joining<br />

our celebration.<br />

Northside met at The Springs Tavern, taking up most of<br />

the dining area! Our beloved co-ordinator Zoe (currently on<br />

maternity leave) popped in to ‘show off the baby’ and what<br />

a gorgeous boy he is! Both events went smoothly and I’m<br />

sure everyone appreciated having a lovely outing together as<br />

a group.<br />

The Outreach group runs similarly to other existing Outreach<br />

groups in Wilson, Beechboro, Bunbury and Albany where<br />

Members can access physiotherapy as well as massage<br />

therapy. Members do not have to attend these services if<br />

they do not wish to but the services are there if needed and<br />

Members need to have an assessment before accessing<br />

these services.<br />

If you have any questions, please don’t hesitate to call me<br />

on 9365 4830 (Mon-Thurs) or 9592 9202 at Rockingham on<br />

a Friday and ask for Nicola. I can also be reached via email<br />

nicola.ryan@mswa.org.au. If you would prefer to come and<br />

see me that’s fine also. Sometimes it’s just the extra little bits<br />

of information that may be helpful for some Members.<br />

Our Rockingham Centre also provides a base for several<br />

of the <strong>MSWA</strong> health and Individual Options teams,<br />

so they can see you by appointment onsite and closer<br />

to home.<br />

Halloween and Melbourne Cup<br />

just about fell on top of each<br />

other this year, so we debated<br />

over what to do. In the end,<br />

Melbourne Cup won out and we<br />

all joined in our own ‘table top’<br />

horse race with a fun little punt. The sweeps were successful<br />

with a few lucky winners taking more than one place!<br />

After the racing day, we set out to enjoy a virtual trip to<br />

Hawaii! Painting, tongue twisters and word jumbles were just<br />

a few of the things keeping spirits high as we dreamt of a<br />

tropical paradise. The room always looks bright with everyone<br />

wearing their leis and the support staff in their grass skirts<br />

and coconut bras!<br />

Our next big events were the Christmas parties which we<br />

will share in the next edition. Have a safe and happy festive<br />

season and we look forward to catching up in 2017!<br />

<strong>MSWA</strong> BULLETIN SUMMER 20<strong>16</strong> | 35

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