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MSWA Bulletin Magazine Summer 15 WEB

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ulletin<br />

The Official <strong>Magazine</strong> of the MS Society of WA | mswa.org.au<br />

Members during a physiotherapy session at the Wilson Outreach Centre<br />

<strong>Summer</strong> 20<strong>15</strong><br />

What does this jargon mean?<br />

NDIS update<br />

Young mothers and MS<br />

Ocean Ride for MS


Inside | <strong>Summer</strong> 20<strong>15</strong><br />

The Multiple Sclerosis<br />

Society of WA (Inc.)<br />

WILSON CENTRE<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 />

Member Services<br />

Directory<br />

GENERAL MANAGER – MEMBER SERVICES<br />

Sue Shapland: 9365 4840<br />

INDIVIDUAL OPTIONS<br />

Manager Community Care Programs,<br />

Gail Palmer: 9365 4851<br />

OUTREACH GROUPS<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 />

BUNBURY OFFICE<br />

9 Ramsay Street 9791 2472<br />

BUSSELTON OFFICE<br />

1/21 Cammilleri Street 9754 2320<br />

MARGARET DOODY RESPITE HOUSE<br />

Manager, Chris Rush: 9385 9574<br />

FERN RIVER ACCOMMODATION<br />

Manager, Liz Stewart: 9356 2747<br />

HAMILTON HILL ACCOMMODATION<br />

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

TREENDALE GARDENS RESPITE &<br />

ACCOMMODATION<br />

Manager, Linda Kidd: 9725 9209<br />

Contact Us<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 />

Editorial Committee<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 />

Letter from the Editor 3<br />

From the desk of the CEO 4<br />

A message from the General<br />

Manager – Member Services 5<br />

<strong>MSWA</strong> Christmas closure 5<br />

Annual General Meeting 20<strong>15</strong> 6-8<br />

<strong>MSWA</strong> CEO wins national award 9<br />

NDIS update 9<br />

Round-up of research and<br />

other items of interest 10-11<br />

What do they mean? 12<br />

What is Magnetic<br />

Resonance Imaging (MRI)? 13<br />

NDIS WA Trial Sites Update (November) 14<br />

There’s an app for that! <strong>15</strong><br />

NDS Conference <strong>15</strong><br />

Trials currently recruiting 16<br />

Thermoregulation 17<br />

An Easy Pour Kettle 17<br />

Mandatory Reporting – what is it? 18-19<br />

Mothering young children –<br />

challenging, yet beneficial 20-21<br />

<strong>MSWA</strong> Nurse Marisa Pinerio retires 21<br />

What do you say when you’re<br />

‘Back in the Game’? 22<br />

The Sailing Sclerosis Project:<br />

Oceans of Hope 23<br />

Events Calender 2016 24<br />

The law of intention 25<br />

MS Mega Home Lottery 25<br />

Ocean Ride for MS 20<strong>15</strong> 26<br />

Santa’s Gift 27<br />

That’s life with Narelle 28<br />

Volunteering with Dawn 29<br />

Wilson Outreach News 30<br />

Bunbury and South West<br />

regional round up 31<br />

Michelle Payne rides Prince of Penzance<br />

to victory in Australia’s biggest race 31<br />

NURSING Our nursing team is usually the first point of contact, after the neurologist,<br />

for anyone diagnosed with multiple sclerosis. We’re committed to providing holistic support<br />

so you have a greater understanding of what to expect from your condition.<br />

Manager: Lou Hatter on 9365 4809<br />

Hospital Liaison Nurse (S.C.G.H.): 9346 3333<br />

Community Nurses: 9365 4812, 9365 4838, 9365 4870, 9387 4846 or 9365 4888<br />

PHYSIOTHERAPY Physiotherapy 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 Members to attain the highest possible level of independence.<br />

Manager: Marilyn Sylvester on 9365 4837<br />

Physiotherapy Office: 9365 4834<br />

OCCUPATIONAL THERAPY Occupational therapists work with Members, and clients,<br />

to enable them to continue their work and other interests for as long as possible, where they<br />

may otherwise have been limited by their condition.<br />

Manager: Sandra Wallace on 9365 4804<br />

An occupational therapy contact can be reached on 9365 4888<br />

COUNSELLING Some people need support to deal with the news that they have MS,<br />

and the challenges that may present over time. Our qualified counsellors provide a safe<br />

space for you to explore your concerns, in a safe and confidential environment.<br />

Manager: Lisa Papas on 9365 4836<br />

Support Counsellors: 9365 4808 or 9365 4811 Peer Support Program: 9365 4808<br />

Welfare Officers & Funding Locators: 9365 4889 or 9365 4835<br />

INDIVIDUAL OPTIONS We are able to supply limited in-home support such as<br />

assistance with personal care for people with disability due to multiple sclerosis, to help<br />

them remain in their homes. Care and supports are provided through a combination of<br />

funding from the Disability Services Commission (DSC) and our own fundraising efforts.<br />

We also manage DSC allocated individually funded care packages.<br />

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

CAMPS & RECREATION<br />

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

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

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

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

2<br />

<strong>Summer</strong> 20<strong>15</strong> The MS Society of Western Australia


Letter from the Editor<br />

Dr Greg Brotherson<br />

In your previous <strong>Bulletin</strong>, we discussed the International<br />

Progressive MS Alliance of MS Societies, formed to put an<br />

end to progressive MS, and found that there are more than<br />

2.3 million people worldwide currently living with multiple<br />

sclerosis (MS). And, according to figures supplied by that<br />

organisation, more than half of these people are living with a<br />

progressive form of multiple sclerosis, the cause of which is<br />

neuron degradation.<br />

Despite advances in treatments for other forms of<br />

relapsing-remitting multiple sclerosis, there are no effective<br />

treatments for the million and more people who have been<br />

diagnosed with the progressive types of multiple sclerosis.<br />

This number is growing as it includes those of us with<br />

relapse-remitting multiple sclerosis who have since gone on to<br />

develop and been diagnosed with secondary progressive MS.<br />

Cracking the code to unravel this puzzle is said by researchers<br />

to be akin to recovering the Holy Grail. Your Society here in<br />

WA is proud to announce that we are the largest contributor to<br />

MS research in Australia. Through our contributions invested<br />

in MS Research Australia, this money finds its way to this<br />

growing International Progressive MS Alliance.<br />

The International Progressive MS Alliance has interviewed Dr<br />

Trevor Kilpatrick, from the Melbourne Neuroscience Institute,<br />

who talks about the challenges behind finding the drivers of<br />

progressive MS that causes such significant disability. To<br />

see this video, type ‘International Alliance interviews Trevor<br />

Kilpatrick’ into your browser (I use Google).<br />

In this Christmas edition of your <strong>Bulletin</strong> you will also find an<br />

article from the CEO, Marcus Stafford, outlining the future<br />

direction the Society will be taking as the NDIS is rolled out<br />

next year. It is one of bricks and mortar on the ground as<br />

the Society strengthens its presence in the country, and the<br />

western and northern suburbs of Perth. When finished, this<br />

program will generate the income necessary to support the<br />

70% of people with multiple sclerosis that modelling tells the<br />

Society managers will be ineligible for funding under the NDIS.<br />

“We are determined to put in the hard yards over the next two<br />

years, to set us up for a strong and solid future for the next<br />

decade and beyond.” Marcus Stafford<br />

In her article, Sue Shapland, General Manager, Member<br />

Services, tells us about some of the highlights in her year,<br />

and gives us a glimpse into 2016. Sue also contemplates just<br />

how quickly the year has passed, but forgets to mention that<br />

she has also been doubling up in Adelaide.<br />

Time certainly flies Sue when you are spending a lot of this<br />

time flying between Perth and Adelaide, and then using<br />

this time to such excellent effect. The MS Society in South<br />

Australia & the Northern Territory now has in place the same<br />

remarkably efficient service and care model we have here in<br />

WA – which takes time and a lot of tireless work on your part<br />

Sue, all for the sole benefit of people with multiple sclerosis.<br />

Elsewhere in your <strong>Bulletin</strong> you will find articles from our usual<br />

contributors Narelle, Ros, and Dr Ong, who are blessed with<br />

particular insights. You will also find an excellent article by<br />

Astrid Plumb-Parlevliet on the challenges multiple sclerosis<br />

presents when it comes to pregnancy and mothering young<br />

children. There is a complete roundup of the latest research,<br />

and of course all the Outreach news.<br />

I would like to thank Members who have contributed an<br />

article, and again confirm that we welcome your unsolicited<br />

submissions. Our aim is to present a smorgasbord of delightful<br />

insights, research and information about living with multiple<br />

sclerosis, along with the latest news about the politics<br />

of disability.<br />

In closing for this year I would like to thank the members of<br />

the Editorial Committee who give their time so freely to make<br />

this magazine possible. In that regard every one of us is a<br />

volunteer here at the <strong>Bulletin</strong> treadmill.<br />

On behalf of the Editorial Committee let me also thank you,<br />

our readership. Without your support the <strong>Bulletin</strong> would not<br />

exist, and what a loss that would be! For people with multiple<br />

sclerosis must always be in a positon to be informed of their<br />

condition, the politics of disability and able to define the image<br />

of themselves that they want projected into the community.<br />

Finally may I take this opportunity to wish everyone a<br />

Merry Christmas, goodwill, health, peace, generosity<br />

and a Happy New Year. Stay safe, keep cool this summer<br />

and we will see you again in 2016.<br />

The MS Society of Western Australia <strong>Summer</strong> 20<strong>15</strong> 3


From the desk of the CEO<br />

Marcus Stafford<br />

As we approach the end of what has been another successful<br />

year at the Society, we find ourselves in a strong position<br />

where we can focus on our future with confidence.<br />

We arrive at this point having put in the hard yards. Today, we<br />

have a strong balance sheet, with a dedicated team that sits<br />

behind this success.<br />

The actions we take in the next two years will secure our<br />

future in the next decade. So, what do the next two years<br />

look like?<br />

<strong>MSWA</strong> is proud to hold the title again in 20<strong>15</strong> as the largest<br />

contributor to MS research nationally, with a record $1.5<br />

million investment made this year alone. As part of this<br />

contribution, we set aside $500,000 to support WA based MS<br />

research projects and due to the importance of research, our<br />

determination will not waiver as we hunt down the cause and<br />

cure for multiple sclerosis.<br />

We will also be closing out our strategic footprint in WA,<br />

resulting in 18 locations across the State, the most in the<br />

Society’s history.<br />

This work will see us finalising new facilities in the South<br />

West and Perth’s northern suburbs – key areas to complete<br />

our Western Australia footprint, to provide quality and<br />

convenience for people living with MS in this State.<br />

For the South West, that will mean a new services hub in<br />

Bunbury offering a base for a health care team to provide<br />

therapy and counselling, an Outreach Group and the delivery<br />

of further community services and programs.<br />

I look forward to providing you more detail around our northern<br />

suburbs plans soon, once they are finalised. But I can tell you<br />

today that our plans are to provide allied health care and high<br />

support accommodation in that area.<br />

In further good news, the State Government has confirmed<br />

they wish to honour our request to provide us with land in<br />

the Shenton Park area for high support accommodation.<br />

These initiatives will meet the Society’s accommodation and<br />

services needs for the next decade.<br />

So what about the National Disability Insurance Scheme<br />

(NDIS), and how will our work here shape our future?<br />

Well we now have a broad framework of services and support<br />

to help people living with other neurological conditions; in fact<br />

we have been doing this for a number of years now. So when<br />

the NDIS rolls out in full next year, we will welcome the NDIS<br />

funding that participants with other neurological conditions<br />

will bring us.<br />

This new income stream will allow us to continue to support<br />

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

funding. They are, mainly – the newly diagnosed, those<br />

classified as low support and those who are 65 years and<br />

over. Our analysis shows that only 30% of people living with<br />

MS will be eligible for NDIS funding, so these tactics will be<br />

critical to build the scale necessary to prosper.<br />

Pleasingly, the work that we have conducted in the last decade<br />

means that we find ourselves in a position of leadership in the<br />

disability sector with an organisation of size and scale. I know<br />

that I speak for all of our staff when I say that we see this<br />

as a double positive. Firstly we will be able to support more<br />

people living with the challenges of disability. Secondly we<br />

will be able to broaden our charter and service offering for all<br />

people with MS.<br />

We are determined to put in the hard yards over the next two<br />

years, to set us up for a strong and solid future for the next<br />

decade and beyond.<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 />

4<br />

<strong>Summer</strong> 20<strong>15</strong> The MS Society of Western Australia


A message from the General Manager<br />

– Member Services Sue Shapland<br />

“I can’t change the direction of the wind,<br />

but I can adjust my sails to always reach my destination.”<br />

Jimmy Dean<br />

Well I know I say this every year but where has the year gone!?<br />

They say time flies when you are having fun, or are busy, and<br />

20<strong>15</strong> has been no exception. We have had great successes<br />

again this year across the Society and many achievements<br />

which we can be proud of.<br />

The wonderful part about working here for me is I get to meet<br />

so many inspirational people living with MS while working with<br />

so many enthusiastic staff members across all departments.<br />

We are very fortunate at <strong>MSWA</strong> to be able to continually grow<br />

our services and expand our footprint, resulting in better<br />

coverage and greater opportunities for our Members.<br />

We sometimes don’t have time to actually reflect on some of<br />

our great achievements as we just get on with the next job.<br />

In November we had three young ladies from Victoria, who<br />

are working on a project to build a supported accommodation<br />

and slow stream rehabilitation facility for younger people, visit<br />

our Hamilton Hill facilities. I felt so proud as the staff and<br />

residents showed off these two facilities. The visitors were<br />

clearly blown away with what we have achieved and by how<br />

‘homely’ the units are. They took many photos as reminders<br />

of their visit.<br />

The National Disability Insurance Scheme (NDIS) trials in WA<br />

are going well and really opening up new opportunities for<br />

eligible participants. Mark Douglas, NDIS Project Officer, has<br />

provided us with another update in this edition of the <strong>Bulletin</strong>.<br />

As we learn more about how the ultimate scheme will roll<br />

out in WA, we will be able to run forums to ensure that our<br />

Members know what the NDIS is, how to check if you are<br />

eligible and what types of supports you may want to consider<br />

to support you in achieving your goals.<br />

There has been so much change this year across the sectors<br />

including health with the opening of the state of the art Fiona<br />

Stanley Hospital and more recently the new Midland Hospital<br />

replacing the Swan Districts Hospital. Coming up next will be<br />

the very welcome new Princess Margaret Hospital for children.<br />

<strong>MSWA</strong> has once again led the way in funding MS research<br />

in Australia with a $1.5 million contribution, including a<br />

generous $0.5 million allocated for WA based projects via<br />

a WA managed Research Funding Round. We will keep you<br />

posted in <strong>Bulletin</strong> about the researchers who were successful<br />

in receiving funding for their projects<br />

2016 will be another very exciting year. The Bunbury service<br />

centre and hub will be built and we will be able to share<br />

our plans for a centre and supported accommodation in the<br />

north metro area. For the newly diagnosed and low support<br />

Members, we will be promoting some new Peer Support<br />

Group opportunities as well as a series of Information Forums<br />

and much more.<br />

I do hope that you have some down time over the festive<br />

season as we head into another New Year! I hope you stay<br />

cool and safe.<br />

Please remember that our Member Services staff are here<br />

to help with information and advice. The switchboard here at<br />

Wilson is closed over the holidays but for non-urgent contacts<br />

you can ring the numbers provided below or via the contact<br />

form on our website, mswa.org.au/get-in-touch which will<br />

be monitored by staff.<br />

<strong>MSWA</strong> Christmas closure<br />

Our office is closed for the Christmas and New Year holiday<br />

period from Friday, 18 December 20<strong>15</strong> and will re-open at<br />

8.30am on Monday, 11 January 2016. However, some staff<br />

will be returning before this date.<br />

If you have been newly diagnosed and require information<br />

about MS or training on therapies, please contact our<br />

on-call Nurse on 0458 362 188, or for counselling services<br />

please call 0458 999 422. For enquiries about in home<br />

supports please call 0417 982 814.<br />

These are not emergency services<br />

and are only available during office<br />

hours over the holiday period.<br />

You can also reach us via website at mswa.org.au/get-intouch.<br />

This will be monitored by the Member Services staff<br />

over the break.<br />

If you have an urgent situation please call your local GP,<br />

nearest hospital or Health Direct on 1800 022 222, or the<br />

Crisis Line on 9381 5555.<br />

The MS Society of Western Australia <strong>Summer</strong> 20<strong>15</strong> 5


Annual General Meeting 20<strong>15</strong><br />

THE ANNUAL GENERAL MEETING OF THE MS SOCIETY<br />

OF WA, HELD AT THE WILSON CENTRE, THURSDAY,<br />

22 OCTOBER 20<strong>15</strong>: A RECORD RESULT AND A NEW<br />

DIRECTION FOR THE SOCIETY IN READINESS FOR THE<br />

NATIONAL DISABILITY INSURANCE SCHEME (NDIS).<br />

Dr Greg Brotherson<br />

“A progressive and incurable condition such as multiple<br />

sclerosis means that each individual will experience their<br />

own personal journey.” Marcus Stafford, CEO<br />

That the Society was seeking an endorsement by financial<br />

Members and Associate members to expand its provision of<br />

services to include people with other neurological conditions<br />

had been circulated by direct mail leading up to the AGM. An<br />

explanatory ‘Letter from the Board’ had also been included<br />

in the previous issue of your <strong>Bulletin</strong>. The cause was the<br />

rollout of the NDIS by the government, and to accommodate<br />

this scheme a change to the Society’s Constitution was<br />

necessary. Interest was therefore high and the meeting was<br />

well attended.<br />

The Society’s President, Mr George Pampacos, welcomed<br />

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

2014 AGM minutes, and asked if there was any business<br />

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

There were none.<br />

With housekeeping matters concluded, Mr Pampacos said<br />

he was pleased to report that the financial year to 30 June<br />

20<strong>15</strong> had been a record-breaking year for the Society, as<br />

well as one of supporting the Membership and preparing for<br />

the NDIS.<br />

In his published report Mr Pampacos said that having met<br />

with Members throughout the year, what he had found most<br />

significant was the wide-ranging spectrum of the condition.<br />

There is the Member with progressive MS for 20 years who<br />

has lived in a wheelchair throughout this time. There is the<br />

professional who, while grappling with a stressful career<br />

worries that the numbness in his arms and legs may impact<br />

on his mobility. Or the young mother, recently diagnosed,<br />

her energy sapped by the daily fatigue, trying to battle<br />

the uncertainty each day brings, let alone the unknown,<br />

frightening journey of the years ahead.<br />

The Society therefore allocates its resources to meet these<br />

wide spectrum of needs, Mr Pampacos continued, building a<br />

strategic footprint that in the country includes the construction<br />

of a new administration and service hub in Bunbury, and<br />

a new accommodation facility planned for Albany. In the<br />

metropolitan area, planning is well underway for new service<br />

and supported-accommodation hubs in the western and<br />

northern suburbs.<br />

To underpin this expansion program, Mr Pampacos said that<br />

20<strong>15</strong> was again a year of records. He was pleased to announce<br />

an increase of nine percent in Member Service hours, and<br />

overall the Society had provided 568,082 hours of service and<br />

care — an amazing 1,556 hours of support each day!<br />

Another record was a further 20% increase in the contribution<br />

the Society made to research — amounting to $1.5 million.<br />

This again not only made the Society the largest contributor to<br />

the national research budget, but also the largest MS Society<br />

in Australia. Our research funding enables real and important<br />

research to help people with multiple sclerosis live better on<br />

a day to day basis.<br />

Mr Pampacos turned now to discuss our sister association,<br />

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

(MSSANT), who he said had fallen on hard financial times (to<br />

within 10 days of closing). Supported for the past 16 months by<br />

the WA Society’s resources, our CEO and management team,<br />

Mr Pampacos said he was pleased to report that MSSANT had<br />

recorded a small profit for the first time in 10 years, increased<br />

its Client Services and made a small contribution to research.<br />

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

to present the financial report. Mr Wright said he was pleased<br />

to announce that the Society’s surplus was $4,739,440,<br />

reflecting another successful year. This surplus is particularly<br />

pleasing as it will support and enable the strategic footprint<br />

outlined by the President (above).<br />

Mr Wright stated that the total income of the Society was<br />

$41,249,681, achieved through government contracts,<br />

support payments and grants, with additional income from<br />

Marketing and Fundraising contributing $25,665,801.<br />

Net expenditure on services to Members has increased by<br />

$2,039,993 (a 10% increase), including a record research<br />

contribution of $1,500,000.<br />

6<br />

<strong>Summer</strong> 20<strong>15</strong> The MS Society of Western Australia


The Society’s balance sheet also reflects a very healthy<br />

increase in net assets of 27% to $22,376,992. Total assets<br />

increased by 22% to $28,935,518. Mr Wright concluded<br />

by encouraging the Membership to read the annual audited<br />

Financial Statements, particularly the Statements of<br />

Comprehensive Income. These provide a detailed breakdown<br />

of income, costs and net contribution by function.<br />

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

Officer’s report by power-point presentation. In his published<br />

report Mr Stafford said that although the State of Western<br />

Australia this year navigated in an uncertain environment of<br />

falling commodity prices, dropping GST revenue and fears<br />

about job security, for the first time the Society’s annual<br />

revenue had exceeded $40 million. This record-breaking<br />

performance is very pleasing indeed, for never before has<br />

such a well-rounded performance been so important.<br />

This performance enabled the Society to continue balancing<br />

the interests of all stakeholders. A progressive and incurable<br />

condition such as multiple sclerosis means that each<br />

individual will experience their own personal journey. As their<br />

needs change over this journey, the Society services are here<br />

to match those needs.<br />

This year, at a quantitative level, Member services to people<br />

with multiple sclerosis continued to grow exponentially<br />

by nine percent. Accommodation and respite continues to<br />

grow with particularly high occupancy rates within both our<br />

metropolitan facilities and Bunbury. The healthcare team<br />

posted an outstanding result for customer satisfaction. And<br />

the Society’s contribution to research is a record in Australia.<br />

These are real things for real people, Mr Stafford said.<br />

Our balance sheet has also given us the confidence to set our<br />

sights on closing out an ambitious strategic plan which includes<br />

growing our allied healthcare services and accommodation<br />

presence in both the metropolitan and country areas; and<br />

preparing the strongest foundation in anticipation of the full<br />

rollout of the NDIS. This new marketplace will threaten the<br />

survival of organisations without scale or the ability to attract<br />

clients to their store in a world that relies on specific customer<br />

revenues flowing from the disability marketplace.<br />

Item 7: Business on Notice.<br />

Special Resolution to amend clause 3.1 of the Constitution.<br />

Mr Pampacos said that the NDIS looms as the biggest social<br />

reform within the disability sector in Australia’s history. In this<br />

new environment people living with a disability will receive<br />

funding directly from the government and then exercise their<br />

choice and control about how and who will provide that service.<br />

The introduction of the NDIS has therefore prompted a change<br />

to the Constitution to enable the Society to offer its services,<br />

on commercial terms, to people with other neurological<br />

conditions and comparable disabilities.<br />

The new wording of clause 3.1 will allow greater flexibility in<br />

determining the scope of the Society’s operation in general<br />

and will allow the additional funding delivered by people<br />

with other neurological conditions who choose the Society<br />

as their provider, to be directed to assist people living with<br />

multiple sclerosis; particularly the newly diagnosed and other<br />

Members with low-support needs who are yet to qualify for<br />

the NDIS; and people over 65 years of age who are ineligible<br />

for the scheme.<br />

continued over page<br />

The MS Society of Western Australia <strong>Summer</strong> 20<strong>15</strong> 7


The proposed wording to be added to the Constitution is<br />

underlined:<br />

3.1 The objects and purposes for which the Society is<br />

established are:<br />

(a) To meet the needs of Members, Provisional Members and<br />

Prospective Members, from the resources of the Society.<br />

(b) To provide from time to time such facilities as the Board<br />

considers necessary or desirable to meet the needs of<br />

Members, Provisional Members and Prospective Members<br />

throughout Western Australia.<br />

(c) To employ such paid, voluntary or seconded staff as<br />

are necessary or desirable for the attainment of the<br />

objects of the Society and, through the Board, to supervise<br />

such staff.<br />

(d) As far as the law will permit and subject to the provisions<br />

of all relevant Statutes, Rules, Regulations and by-laws<br />

and of all licences issued in pursuance thereof, to generate<br />

income and to collect funds and to accept donations,<br />

subscriptions and bequests to further the aims and objects<br />

of the Society.<br />

(e) To register as a provider of support services under<br />

programs administered pursuant to the National Disability<br />

Insurance Scheme Act 2013 (Cth) or any similar scheme<br />

that allow eligible persons (NDIS Participants) the<br />

flexibility to individually retain eligible service providers<br />

using funds allocated to them as part of the relevant<br />

scheme (NDIS).<br />

(f) To use the facilities, resources and staff of the Society<br />

to offer (on reasonable commercial terms) services to<br />

NDIS Participants who have been diagnosed with Multiple<br />

Sclerosis, other neurological conditions or diseases with<br />

comparable disabilities or which are otherwise ancillary<br />

to services provided by the Society (whether or not the<br />

NDIS Participant is a Member, Provisional Member or<br />

Prospective Member).<br />

(g) To apply all funds held by the Society towards the<br />

welfare of the Society, its’ Members, Provisional Members<br />

and Prospective Members, non-Member clients and its<br />

administration and running costs.<br />

(h) To make known to the general public, by any desirable<br />

means, the aims and objectives of the Society.<br />

(i) To educate the Members, Provisional Members,<br />

Prospective Members, Associates and the public, about<br />

Multiple Sclerosis and other neurological conditions and<br />

diseases with comparable disabilities.<br />

To provide all Members, Provisional Members, Prospective<br />

Members and Associates with access to information<br />

regarding the achievements in and the progress of research<br />

into Multiple Sclerosis, other neurological conditions and<br />

diseases with comparable disabilities.<br />

To support research work towards the prevention,<br />

treatment, control and cure of Multiple Sclerosis, other<br />

neurological conditions and diseases with comparable<br />

disabilities.<br />

(j) To do all such acts and things as are necessary or<br />

convenient for or conducive to the attainment of all or<br />

any of the aforementioned objects and purposes of<br />

the Society.<br />

Moved: George Pampacos; Seconded: Bill Hassell.<br />

The President requested that cards in favour of the amendment<br />

of Clause 3.1 of the Constitution be shown. 36 votes were<br />

counted with 50 proxies in favour giving a total of 86 in favour.<br />

The President requested that cards against the amendment of<br />

Clause 3.1 of the Constitution be shown. There was one vote<br />

against. The motion was carried 86/1.<br />

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

Board of Directors.<br />

In accordance with the Constitution the Society had called<br />

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

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

Greg Brotherson, and as no other nominations were received<br />

he was declared duly re-elected.<br />

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

It was proposed, moved, seconded and passed that the Board<br />

of Directors would call for tenders from interested accounting<br />

firms, and appoint an Auditor.<br />

Item 10: Questions from Members.<br />

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

for their attendance, invited everyone to morning tea and<br />

closed the AGM.<br />

Copies of the Society’s Annual Report and audited<br />

Financial Statements, and particularly the Statement<br />

of Comprehensive Income, are available on request,<br />

call (08) 9365 4888.<br />

8<br />

<strong>Summer</strong> 20<strong>15</strong> The MS Society of Western Australia


<strong>MSWA</strong> CEO wins<br />

national award<br />

We are delighted to share the news that our CEO Marcus<br />

Stafford was recently recognised as one of the top leaders in<br />

the country, winning the Not-for-Profit Manager of the Year<br />

as part of the Australian Institute of Management’s (AIM)<br />

Excellence Awards.<br />

We sat down with Marcus to talk with him about his award.<br />

“This award is a great honour not only for me, but I also accept<br />

it on behalf of the Board of Directors, management, staff<br />

and the thousands of people with MS and other neurological<br />

conditions who we are here to serve,” said Marcus.<br />

“Our team of more than 500 employees working throughout<br />

Western Australia provide the very best care and support to<br />

people living with MS. This award recognises the effort and<br />

care provided by everyone in our organisation, every day.<br />

“It is also pleasing to see not-for-profit organisations being<br />

given a national forum where they can be recognised as<br />

being part of Australia’s best management within business,<br />

government and industry.”<br />

Since taking over as CEO in 2002, Marcus and the team<br />

have transformed <strong>MSWA</strong> into one of the best performing<br />

not-for-profits in WA.<br />

AIM WA CEO Gary Martin has congratulated Mr Stafford on<br />

the win and said it was great to see a WA winner.<br />

“Marcus has instituted substantial changes for his<br />

organisation. Under his leadership, the organisation has<br />

grown from a position of questionable sustainability to a<br />

position of profit and strength,” Professor Martin said.<br />

“Marcus is a truly inspirational leader with strong clarity of<br />

vision and a collaborative and courageous leadership style.”<br />

After being contested nationally for the first time in 2014, the<br />

AIM Excellence Awards are unique amongst business awards<br />

as they honour the achievements of managers as individuals,<br />

regardless of their standing, location or industry.<br />

Congratulations Marcus on your significant achievement.<br />

NDIS update<br />

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

biggest social reform the disability sector has seen in<br />

Australia’s history. It will give people living with disability<br />

the power to choose who provides them with the services<br />

and care they need.<br />

At <strong>MSWA</strong> we wholeheartedly welcome this change as it<br />

allows our Members to choose who will provide them with<br />

the services they want or need. Based on their existing<br />

relationship with <strong>MSWA</strong>, we strongly hope our Members<br />

continue to choose us as their service provider.<br />

Today, in addition to the support and services we provide to<br />

people living with MS, we extend care to people living with<br />

over 30 other types of neurological conditions.<br />

At the conclusion of the current trials, people with other<br />

neurological conditions will ‘bring dollars to our door’.<br />

They will become customers shopping in the disability<br />

marketplace. Funds derived from providing these services<br />

to others will allow us to continue to provide and grow our<br />

services and support for people living with MS.<br />

Thank you for the opportunity to change our Constitution.<br />

It allows us to secure our future within this exciting<br />

environment of choice and control for people with<br />

disabilities.<br />

The MS Society of Western Australia <strong>Summer</strong> 20<strong>15</strong> 9


Round-up of research<br />

and other items of interest<br />

Sue Shapland RN, BN<br />

Study to find if chocolate can<br />

help treat MS<br />

Oxford Brooks University will<br />

study 40 people with MS who<br />

will be given hot chocolate every<br />

day as part of a trial funded by<br />

the UK MS Society. The study<br />

will explore if the drink, rich in<br />

flavonoids which are thought<br />

to reduce inflammation, can<br />

reduce fatigue.<br />

From the MS Society Canada:<br />

Researchers link the ‘clock’ hormone melatonin to<br />

seasonal MS relapses<br />

Relapse activity follows the seasons. MS attacks are generally<br />

more frequent in the spring and summer. The reason for this<br />

seasonal pattern is unknown. Recently, a team of scientists<br />

from Argentina and the United States identified a possible<br />

candidate, the hormone melatonin. Melatonin levels peak<br />

over the fall and winter months and then drop off in spring<br />

and summer.<br />

The authors provide strong evidence that melatonin protects<br />

against MS relapses, decreasing the number and severity of<br />

relapses during the fall and winter months. This protective effect<br />

is diminished in spring and summer as melatonin levels subside.<br />

MS Scientific Research Foundation-funded study<br />

identifies specific type of white blood cell involved in MS<br />

MS research has largely focused on the role of T cells in the<br />

disease process, but attention has lately turned to another<br />

type of white blood cell called B cells.<br />

The researchers found an increased number of pro-inflammatory<br />

B cells containing GM-CSF, a cytokine called granulocyte<br />

macrophage colony-stimulating-factor (GM-CSF), in untreated<br />

people with MS compared to healthy controls.<br />

In cell culture experiments, they found that this specific type<br />

of B cell interacted with and turned on other inflammatory<br />

cells that are known to activate disease-causing T cells.<br />

The remarkable potential for B cell treatments to treat MS<br />

and improve quality of life speaks to the importance of<br />

understanding how certain types of B cells contribute to<br />

both relapsing and progressive MS disease; why people who<br />

receive B cell treatments do better overall; and how B cells<br />

treatments can be fine-tuned to yield the greatest benefit<br />

while avoiding harmful side effects.<br />

From the UK MS Trust:<br />

Could vitamin D make disease<br />

modifying drugs more effective<br />

against MS?<br />

Vitamin D and disease modifying<br />

drugs (DMDs) both have effects<br />

on the immune system. This study<br />

sought to see if vitamin D levels<br />

could help to reduce MS disease<br />

activity further in people also taking<br />

one of the beta interferons - glatiramer acetate or fingolimod.<br />

In this study involving 324 people on therapies, vitamin D<br />

blood levels were compared with information on relapse, MRI<br />

lesions and disability progression. They found that in people<br />

taking DMDs, those with higher blood levels of vitamin D had<br />

less new inflammatory events such as relapses and active<br />

brain lesions. This effect was not seen in participants taking<br />

glatiramer acetate.<br />

How common is nerve pain<br />

in early MS?<br />

This German study involved<br />

377 people with MS, who had<br />

been diagnosed for on average<br />

4.2 years, and looked into how<br />

common nerve pain was in<br />

early MS. They found that 4%<br />

of participants had scores that<br />

indicated they were experiencing<br />

nerve pain. A further 9.5% had scores where nerve pain could<br />

be a possibility but wasn’t confirmed as the type of pain.<br />

The researchers conclude that as the participants<br />

experiencing nerve pain also had higher levels of depression<br />

and fatigue, treatment of the pain should take these other<br />

factors into account.<br />

10<br />

<strong>Summer</strong> 20<strong>15</strong> The MS Society of Western Australia


Could intermittent steroid treatment help people with<br />

progressive MS?<br />

This small study in Denmark, involving <strong>15</strong> people with primary<br />

progressive MS and <strong>15</strong> people with secondary progressive<br />

MS, investigated the use of intermittent oral steroid treatment<br />

in people with progressive forms of MS. All participants took<br />

oral methylprednisolone at a dose of 500mg for three days<br />

every fourth week for a period of 60 weeks.<br />

The study found no change in the levels of markers of<br />

inflammation after intermittent steroid treatment. There were<br />

improvements seen on the MRI brain scans. There were also<br />

significant improvements in EDSS scores and also in scores<br />

in several of the questionnaires, most notably in the physical<br />

sections of these, such as timed walking tests.<br />

The authors concluded that intermittent steroids may be<br />

beneficial for people with progressive MS. However, this<br />

was a small study and did not use a control group. Generally<br />

the long-term use of steroids is not recommended due to<br />

well-known side effects.<br />

Emotional changes in people<br />

with MS<br />

This French study, involving 60<br />

people with relapsing-remitting<br />

(RRMS) MS and 41 with primary<br />

progressive MS, found that<br />

emotional changes are common<br />

in both groups and can be found<br />

in people who do not meet<br />

the criteria for a diagnosis of<br />

depression or anxiety.<br />

As even subtle emotional changes can impact on quality of<br />

life the researchers conclude that a health professional’s<br />

ability to recognise these smaller changes, not just the more<br />

obvious major depression and anxiety, could help people with<br />

MS access the support they need to manage any emotional<br />

changes they are experiencing.<br />

Approximately 25% to 33% of participants had other mood<br />

symptoms such as emotional blunting (a lack of emotional<br />

reaction) or decreased emotional control.<br />

Levels of depression, anxiety and other emotional changes<br />

(as determined by scores on the mood questionnaires) were<br />

not related to levels of disability, fatigue, cognitive symptoms<br />

or length of time someone had lived with MS. In people with<br />

RRMS a lack of emotional control was related to a decrease<br />

in quality of life.<br />

Can menopause affect MS?<br />

This study involved 724 women, about half of whom were<br />

post-menopausal. This study shows that menopause appears<br />

to have a small effect on MS and levels of disability. However,<br />

it is important to note that the increasing levels of disability<br />

only equated to a one point change in EDSS score over a<br />

period of 10 years.<br />

The authors suggested this change might be due to<br />

hormone levels, in particular levels of oestradiol (which is<br />

a type of oestrogen), which some studies have shown to<br />

be neuroprotective. The use of HRT, which replaces and<br />

increases the levels of hormones lost during menopause, by<br />

participants in the study was low.<br />

The researchers suggested that a larger study with more<br />

women using HRT would be needed to show if the effects<br />

observed were related to hormone levels and if HRT could be<br />

neuroprotective for women with MS.<br />

Read more at:<br />

mswa.org.au/<br />

researchupdate<br />

The MS Society of Western Australia <strong>Summer</strong> 20<strong>15</strong> 11


What do they mean?<br />

Sue Shapland RN, BN, Cert. MS Nursing.<br />

Members have said they would like to know what some of the<br />

most commonly used MS jargon actually means. Often when<br />

looking up the meanings of these words, even their definitions<br />

need explaining!<br />

Cerebro-spinal fluid (CSF): the watery fluid that is produced<br />

in the brain and continually washes over the brain and<br />

spinal cord providing nutrients and cushioning to protect<br />

the structures.<br />

Lumbar Puncture (LP): a fine needle is inserted into<br />

the spinal canal to collect CSF for analysis, i.e. looking for<br />

abnormal cells and signs of inflammation.<br />

MRI: see the more detailed article on page 13 of this <strong>Bulletin</strong>.<br />

Relapsing-remitting MS (RRMS): the most common type<br />

of MS diagnosed. This means people have periods when<br />

symptoms flare up aggressively – known as a relapse,<br />

attack or exacerbation. This is followed by periods of good or<br />

complete recovery – a remission.<br />

Secondary progressive MS (SPMS): many people initially<br />

diagnosed with RRMS find that over time, often quoted as<br />

10 years, the frequency of relapses decreases but disability<br />

gradually increases. As this follows RRMS it is known as<br />

SPMS. People’s experiences vary widely. Note: There has<br />

been a positive impact due to earlier diagnosis and the<br />

introduction of the various MS therapies use for RRMS, which<br />

aim to reduce the number and severity of relapses.<br />

Primary progressive MS (PPMS): Approximately 10%<br />

of people diagnosed with MS have this form of MS in which<br />

disability increases from the outset. Various people experience<br />

PPMS differently. While some have a persistent increase in<br />

disability, others may stabilise or have a gentler worsening<br />

of symptoms.<br />

Lhermitte’s sign: a sudden sensation, that feels like an<br />

electric shock, which passes down the back of your neck and<br />

into your spine, and may then affect your arms and legs. It<br />

is usually triggered by bending your head forward towards<br />

your chest. It can be a symptom of multiple sclerosis but also<br />

occurs in other conditions.<br />

Uhthoff’s phenomenon or sign: the temporary worsening<br />

of MS symptoms – most often visual but sometimes motor<br />

(movement or strength) or sensory - caused by an increase in<br />

temperature. The visual symptoms may include double vision,<br />

reduced sharpness of vision, or black spots appearing before<br />

the eyes.<br />

Evoked potentials tests: these electrical tests measure the<br />

speed of nerve messages along sensory nerves to the brain<br />

and are sometimes used in diagnosing MS.<br />

These include visual evoked potentials (VEP) which looks at<br />

messages sent from the eyes to the brain in response to a<br />

flashing chessboard pattern on a computer screen.<br />

Testing the speed of sensations from the skin to the brain,<br />

somatosensory evoked potentials (SSEP), involves a series of<br />

tiny electric shocks to parts of the limb or limbs. Measuring<br />

the speed of transmission can show delays which can indicate<br />

damage to the nerve pathway/s.<br />

Expanded Disability Status Scale (EDSS): is a method of<br />

measuring disability in MS and monitoring changes over time.<br />

It is widely used in clinical trials and in the assessment of<br />

people with MS.<br />

The EDSS scale ranges from 0 to 10 in 0.5 increments that<br />

represent higher levels of disability. Scoring is based on an<br />

examination by a neurologist.<br />

MS hug: a symptom of MS where you feel as if you have a<br />

tight band around your chest or ribs or a feeling of pressure<br />

on one side of your torso. Some people report they find it<br />

painful to breathe.<br />

Any chest pain should be checked out by a doctor unless you<br />

are sure of the cause. The MS hug is not dangerous but any<br />

chest pain should be taken seriously just in case it is being<br />

caused by something else like heart or breathing problems.<br />

It is always best not to assume that everything you are<br />

experiencing is due to your MS, but to speak to a health<br />

professional straight away.<br />

Reference: UK MS Trust A-Z mstrust.org.uk/a-z<br />

12<br />

<strong>Summer</strong> 20<strong>15</strong> The MS Society of Western Australia


What is Magnetic<br />

Resonance Imaging (MRI)?<br />

Lou Hatter, MS Nurse Specialist<br />

An MRI is a sophisticated machine used in neurology to help<br />

‘see’ inside the central nervous system (CNS). The CNS is made<br />

up of three parts – the brain, the brain stem and the spine.<br />

The MRI works by detecting the magnetic particles in atoms<br />

within cells and sending magnetic pulses at different rates<br />

and strengths of the electromagnetic pulse through the<br />

body. These are picked up by the electromagnetic receiver.<br />

The magnetically charged particles in the body’s tissues get<br />

lined up with the magnetic pulse and then return (relax) to<br />

their positions once the magnetic field is turned off; this is<br />

detected by the machine.<br />

There are many pulses including long-strong pulses,<br />

short-strong pulses, and long and short weak pulses. The<br />

MRI programmers use these different pulse/spin sequences<br />

to make the different tissue structures in the body stand out<br />

from each other.<br />

In 20+ years of studying MRIs, the radiologists have<br />

discovered that different tissues, e.g. brain, bone, liver,<br />

blood, etc., all show up best using different combinations<br />

of pulse techniques. They have also discovered that certain<br />

combinations of techniques show abnormalities like tumours<br />

or scars for example.<br />

When you have an MRI scan, they run a number of different<br />

scans. There are standard ones, used for pretty much all<br />

medical conditions, called T1 and T2 sequences. This depends<br />

on how they measure the relaxation of the magnetic particles.<br />

Additional scan types are constantly being developed, but the<br />

most commonly used additional scan type for MS investigations<br />

is called Fluid Attenuated Inversion Recovery (FLAIR).<br />

The way MRI works is that different types of matter or tissue<br />

give off different levels of energy when placed in a magnetic<br />

field. The computer takes pictures of what is being scanned in<br />

‘slices’ and collects the energy signal from each slice. Because<br />

of some of the loud banging noises the scanner makes, it can<br />

also work out the signal from small cubes of each slice. These<br />

cubes are called voxels (short for volume pixels).<br />

Each slice provides the information for one image and each<br />

voxel provides the information for one pixel in that image.<br />

The whole process uses very advanced mathematics, but<br />

ultimately, the higher the overall signal from a voxel, the<br />

brighter the pixel is on the final image (and the lower the<br />

signal, the darker the pixel).<br />

In a T1 scan, grey matter gives off a low signal and looks<br />

darker in the images than white matter which gives off a<br />

higher signal and looks pale grey. The cerebro-spinal fluid<br />

(CSF), the fluid in the CNS, gives off the lowest signal and<br />

looks black.<br />

Everything is reversed in a T2 scan. Grey matter looks pale<br />

grey, white matter looks darker grey and CSF looks white.<br />

FLAIR is a clever adjustment of a T2 scan which suppresses<br />

the signal from CSF. This means grey matter looks pale grey,<br />

white matter looks darker grey and CSF looks black.<br />

FLAIR is part of the T2 imaging, with a twist. Its purpose is to<br />

distinguish things that border on areas of fluid (such as CSF<br />

in the ventricles).<br />

Different lesions give off different signals. A white matter MS<br />

lesion gives off a high signal in T2 and FLAIR scans, looking<br />

like a ‘white spot’ against the white matter which is otherwise<br />

relatively dark in these scans.<br />

T1 imaging is no good for spotting MS lesions unless the<br />

lesion has caused the area to ‘die’, or ‘atrophy’, in which case<br />

it is called a ‘black hole’ – because of its appearance.<br />

The terms ‘hyper intensity’, ‘hyper intense’, ‘high signal’, etc.,<br />

all refer to the fact that somewhere is brighter/whiter than<br />

it should be; hyper = more. ‘Hypo-intensity’, ‘hypo-intense<br />

area’, refers to somewhere being darker than it should be;<br />

hypo = less. The relevance of these areas depends on their<br />

size, shape, location and the type of scan.<br />

CSF bathes the brain which means that all the sulci of the<br />

brain are full of CSF and thus there is a lot of white on T2<br />

images. Spotting a lesion in amongst lots of perfectly normal<br />

white stuff can be tricky however; it is easier in FLAIR images<br />

– because there is less white as the CSF appears as black.<br />

(Some small white spots can be perfectly normal, they are<br />

usually blood vessels.)<br />

Sometimes, the neurologist requests a scan with contrast.<br />

A T1 scan is taken after an injection with a ‘contrast agent’,<br />

usually gadolinium, which looks bright white on the scan. The<br />

CNS, i.e. the brain and spinal cord, is protected by the blood<br />

brain barrier (BBB) which stops harmful things from getting<br />

in; gadolinium normally can’t get through.<br />

In MS, cells from the immune system pass through the blood<br />

brain barrier and attack the myelin coating of nerves, causing<br />

inflammation and damage: a lesion. While this is happening,<br />

the lesion is called ‘active’, ‘enhancing’ or ‘contrast enhancing’.<br />

The gap the immune system has caused in the BBB allows<br />

gadolinium to get in. If the BBB is intact there should be no<br />

bright white signs of gadolinium inside the brain or spinal cord. If<br />

there are, these show where there are breaches, in other words,<br />

where the immune system is actively causing new damage.<br />

Contrast is used to show up very new lesions, typically newer<br />

than two to six weeks, and to help show which lesions are<br />

active and which aren’t as this can be important for deciding<br />

on treatments.<br />

Adapted from MS Society UK.<br />

The MS Society of Western Australia <strong>Summer</strong> 20<strong>15</strong> 13


NDIS WA Trial Sites Update –<br />

November 20<strong>15</strong><br />

Mark Douglas, <strong>MSWA</strong> Project officer,<br />

National Disability Insurance Scheme and My Way Trials<br />

As mentioned previously, in Western Australia we are trialling<br />

two different models of the NDIS – the Commonwealth trial<br />

(NDIS) and the State-based trial (NDIS – My Way).<br />

An independent evaluation of the trial of the two models in<br />

WA is being conducted by Stanton’s International and an<br />

interim report was due in October 20<strong>15</strong>, but this has been<br />

delayed. The information gathered will be used to compare<br />

and contrast the two trial site models. Federal assistant<br />

Social Services Minister Mitch Fifield said in June this year<br />

that any decision about the future model for disability support<br />

in WA would be made jointly with the WA government after<br />

independent evaluations of each trial.<br />

Across WA, 1,700 people have been identified as eligible to<br />

become participants in the Commonwealth NDIS hills area<br />

and approximately 1,400 of them now have plans in place.<br />

There is still room for approximately 1,500 more to gain<br />

access to the Commonwealth scheme if deemed eligible.<br />

The State-based (NDIS My Way) trial has almost 800<br />

participants in the Lower South West, Busselton and<br />

surrounding areas, and no figures are yet available for the<br />

Cockburn Kwinana extension site that commenced in July<br />

this year.<br />

Overall these figures represent lower participant numbers<br />

than originally expected. Exact reasons for this are not known<br />

but it has been suggested that the original projected numbers<br />

may have been overestimated by the Productivity Commission<br />

in their report.<br />

Australia-wide, more than 17,000 people have now gained<br />

access to the NDIS. When full rollout of the scheme is<br />

completed in July 2019, it is expected the numbers will be<br />

closer to 400,000 people.<br />

With full rollout of the scheme due to commence Australia-wide<br />

from July next year, only Victoria and New South Wales have<br />

now signed bilateral agreements with the Commonwealth<br />

Government and have released details on how the NDIS will<br />

be rolled out in their states. Information on the full scheme<br />

rollout details provide potential participants with some degree<br />

of certainty as to when they may be able to access supports<br />

provided by the NDIS.<br />

If you are living in one of the trial site areas and haven’t yet<br />

applied for access to the scheme, I would encourage you to<br />

do so now rather than waiting for the full rollout to commence.<br />

The numbers entering the scheme during the full rollout will<br />

be enormous and delays may be experienced.<br />

The planning process can be overwhelming, lengthy and<br />

confusing. <strong>MSWA</strong> staff are here to help our Members,<br />

as potential participants. Our experienced Social Welfare<br />

Department staff are here to help you understand and<br />

navigate the NDIS processes. They can assist you with<br />

pre-planning information which will ensure your plans contain<br />

the full information and reflect your support requirements.<br />

<strong>MSWA</strong> has always been here to assist our Members and<br />

our recent experience shows that having the support of our<br />

experienced staff results in better or more comprehensive<br />

plans for individual participants. In early 2016 we will be<br />

conducting a number of NDIS information and pre-planning<br />

advice sessions; we will keep you posted!<br />

If you would like any further information, please contact<br />

Project Officer for Member Services – Mark Douglas on<br />

9365 4824.<br />

NDIS contact details:<br />

For people living in the local government areas of<br />

Swan, Kalamunda and Mundaring:<br />

NDIS: ndis.gov.au<br />

Telephone: 1800 800 110<br />

NDIS Access checklist: ndis.gov.au/<br />

ndis-access-checklist<br />

NDIS – My Way contact details:<br />

For people living in the South West Region<br />

& Cities of Cockburn & Kwinana:<br />

NDIS – My Way: disability.wa.gov.au/<br />

wa-ndis-my-way/wa-ndis-my-way/<br />

Telephone: 1800 996 214<br />

Eligibility Check: dsc.wa.gov.au/Am_I_Eligible/<br />

14<br />

<strong>Summer</strong> 20<strong>15</strong> The MS Society of Western Australia


There’s an<br />

app for that!<br />

It’s not uncommon for anyone from six to 60 to have a<br />

smartphone these days. They’ve become part and parcel of<br />

everyday life and one of the best ways to use smartphones<br />

is to download applications, otherwise known as ‘apps’. Apps<br />

have made life a lot easier for us and there are finance apps,<br />

game apps, reading apps, cooking apps – basically every<br />

kind of app imaginable. Here we bring you five free apps that<br />

will improve your life in one way or another!<br />

1. Healthdirect – Australia’s free health app that helps you<br />

make informed decisions about your health. You can use<br />

the Healthdirect app to check your symptoms, find a health<br />

service and get trusted health information.<br />

Compatibility: iPhone, Android<br />

2. Elevate – The brain training app was designed to improve<br />

focus, speaking skills, processing speeds and more. Each<br />

person gets a personalised training program with loads of<br />

interactivity and smart daily motivation reminders. It has<br />

been downloaded over five million times and was named<br />

the best free iPhone app in 2014.<br />

Compatibility: iPhone, Android<br />

3. HabitBull – Break a bad habit or develop a good one with<br />

HabitBull. It’s an alarm app for your habits and is possibly<br />

more suited to developing a good habit than beating out a<br />

bad one!<br />

Compatibility: Android<br />

4. BrainyApp – BrainyApp was developed by Alzheimer’s<br />

Australia in partnership with Bupa Health Foundation to<br />

raise awareness of the risk factors for Alzheimer’s disease<br />

and other types of dementia, and to help you be ‘brain<br />

healthy’. Use the BrainyApp survey to find out how brain<br />

healthy you are and complete the activities to watch your<br />

brain health score rise.<br />

Compatibility: iPhone, Android<br />

5. Epicurious – This app enables food lovers to search for<br />

professionally created and tested recipes, make interactive<br />

shopping lists, follow step-by-step stove-side instructions,<br />

and more.<br />

Compatibility: iPhone, Android, Windows, Kindle<br />

NDS News Update<br />

Funding available for people with<br />

disability and their carers to attend<br />

the NDS WA Conference 2016<br />

NDS is pleased to advise that, through a Lotterywest<br />

grant, funding is available to assist people with disability<br />

to attend the NDS WA Conference 2016.<br />

The conference ‘Shaping the Future - Preparing for<br />

Change’ will be held on 17 and 18 March 2016 at the Perth<br />

Convention and Exhibition Centre. This important disability<br />

sector event offers a comprehensive program focusing on<br />

the changing landscape for disability service provision in<br />

Western Australia. The conference program is available on<br />

the NDS website.<br />

The funding will cover the cost of registration for people<br />

with disability and their carer. For people with disability<br />

living in regional and remote areas, the funding will also<br />

cover the cost of accommodation and travel.<br />

Support to attend the conference may be provided in<br />

the form of full or part funding. The amount available to<br />

individuals will be dependent upon the number of people<br />

who apply for funding assistance.<br />

To apply, please email your completed Expression of<br />

Interest form, now available for download on the NDS<br />

website, to Julie Walton at julie.walton@nds.org.au by<br />

Monday, 18 January 2016.<br />

If you have any questions about the funding, please contact<br />

Julie by email on julie.walton@nds.org.au or by telephone<br />

on 02 9256 31<strong>15</strong><br />

For general enquiries about the conference, please<br />

contact Helen Moorhead on 08 9208 9803 or email<br />

WAConference@nds.org.au<br />

The MS Society of Western Australia <strong>Summer</strong> 20<strong>15</strong> <strong>15</strong>


Trials currently<br />

recruiting<br />

Enhancing balance and gait in people living<br />

with MS<br />

The Centre for Restorative Neurology WA and Sir Charles<br />

Gairdner Hospital are conducting clinical trials in the<br />

rehabilitation of people living with MS.<br />

To participate in this study, you need to:<br />

- Be 18 years of age or over<br />

- Have definite relapsing-remitting or a progressive form<br />

of MS<br />

- Have mild to moderate balance impairment (including falls)<br />

- EDSS score < 6<br />

This study aims to evaluate if combining brain stimulation<br />

with balance therapy will improve mobility and independence<br />

among people living with MS who have a balance and/<br />

or walking impairment. Interested participants will have to<br />

attend two weekly sessions of balance therapy for six weeks<br />

each lasting 90 mins.<br />

Half of the participants will receive the brain stimulation while<br />

the other half will receive sham brain stimulation prior to<br />

balance therapy. To date there have been no adverse effects<br />

associated with the brain stimulation.<br />

For more information, please contact Dave Hathorn<br />

or Jenny Eisenhauer at the WANRI clinic on<br />

9346 3966 or at dave.hathorn@health.wa.gov.au<br />

or jenny.eisenhauer@uwa.edu.au<br />

Primary Progressive MS Study<br />

Request for Voluntary Participants<br />

A study on Primary Progressive Multiple Sclerosis (PPMS) is<br />

being undertaken at the Menzies Institute for Medical Research.<br />

While there are now a number of immunotherapy treatments<br />

available for people with relapsing remitting MS, little<br />

progress has been made on treatments for people with<br />

Primary Progressive MS (PPMS). Understanding the causes of<br />

PPMS can ultimately lead to treatments and prevention.<br />

The study requires participants who have:<br />

• Primary Progressive MS<br />

• Aged between 18 – 59 years<br />

• Resident in Australia<br />

Participation involves the completion of questionnaires at<br />

home, a phone interview and the provision of a blood sample<br />

at a local pathology service.<br />

If you are interested in participating in this study or would<br />

like further information, please contact Susan Dobson on<br />

(03) 6226 4269 or at ppms.study@utas.edu.au or visit<br />

menzies.utas.edu.au/ppms.<br />

16<br />

<strong>Summer</strong> 20<strong>15</strong> The MS Society of Western Australia


Thermoregulation<br />

Sandra Wallace, Occupational Therapy Manager<br />

The <strong>MSWA</strong> Fact Sheet on Thermoregulation states that “The<br />

body’s ability to regulate its core body temperature, even<br />

when the temperature of the environment changes, is called<br />

thermoregulation”.<br />

This is the mechanism through which our body maintains<br />

warmth in cooler environments and cools off in warmer<br />

environments. The literature varies in its reporting, but<br />

more than half of people with MS report problems with body<br />

temperature regulation. Feeling too cool is unpleasant, but<br />

when too warm MS symptoms can exacerbate, even if only<br />

temporarily. While everyone feels extremes of hot and cold,<br />

a person with MS can have a smaller comfort zone before<br />

feeling too hot or too cold. Some people feel the cold more<br />

than the heat, whilst others feel the heat more than the cold.<br />

Some feel both.<br />

If you are sensitive to temperature changes, you may want to<br />

monitor your food and drink intake. For example a hot drink<br />

is warming and raises body temperature. If you are already<br />

warm, you may benefit from a cold drink to lower your body<br />

temperature. The same principle applies when choosing<br />

between warm foods or cold foods. The body will warm to<br />

digest a big meal, so smaller meals can have less impact on<br />

body temperature fluctuations.<br />

When it comes to exercise and general activity, it is obvious<br />

to consider wearing cotton clothing that is more cooling than<br />

synthetics fabrics. Some people have found benefits in using<br />

cooling vests and cooling neck ties. Have a cold shower if<br />

necessary, or use a fine water spray on the face and body.<br />

Not all these suggestions suit everyone. As always, it can take<br />

a bit of trial and error to find what suits you best.<br />

The Air Conditioning Grant<br />

Air conditioners assist by controlling the external environment.<br />

If you are on a pension or low income you may qualify for the<br />

Thermoregulatory Subsidy Grant through the Office of State<br />

Revenue. This grant is paid once a year directly into your account<br />

and is to help pay for the additional costs of running an air<br />

conditioner, for heating or cooling, related to thermoregulation<br />

difficulties. You must reapply every two years.<br />

<strong>MSWA</strong> receives a block grant from Lotterywest to help<br />

financial Members on low incomes (full pension) who do not<br />

have an air conditioner already in their home. Eligibility criteria<br />

apply. The grant is for up to $1,500, excluding GST, and costs<br />

exceeding this must be met by the applicant. Funding is also<br />

available to replace old air conditioners that can’t be repaired.<br />

For more information or an application form please<br />

contact the Occupational Therapy team on 9365 4888 or<br />

email sandra.wallace@mswa.org.au<br />

An Easy Pour Kettle<br />

Emma Clifford, Occupational Therapy Assistant<br />

The Occupational Therapy (OT) staff at Wilson recently had<br />

a demonstration of a new kettle - ECCELLO.<br />

The kettle doesn’t need to be removed from the weighted<br />

cradle while pouring and it rotates on an arc to direct the<br />

water to the cup. The unique handle design provides a<br />

stable grip, the kettle is light when removed for refill and<br />

has a stable base, improving safety. Whilst the function<br />

of the kettle promotes ease of use and safety, the stylish<br />

design more closely resembles a typical modern kettle.<br />

This appliance may be useful for those who experience<br />

weakness in their hands, wrist or arms and for those who<br />

have to be seated or can only use one hand.<br />

The company very<br />

generously donated<br />

four kettles to the OTs<br />

at <strong>MSWA</strong> for a trial<br />

and demonstration<br />

purposes. Two were<br />

also kindly donated<br />

to Outreach and were door prizes at the Members’<br />

Christmas Party.<br />

Please contact the <strong>MSWA</strong> OTs on 9365 4888 if you are<br />

interested in trialling an ECCELLO Kettle and for information<br />

on how to purchase one.<br />

The MS Society of Western Australia <strong>Summer</strong> 20<strong>15</strong> 17


Mandatory Reporting –<br />

what is it?<br />

Sandra Wallace, Occupational Therapy Manager<br />

Driving is an ordinary daily activity for most Australian adults.<br />

In WA many of us rely heavily on our own cars to get about.<br />

The thought of not driving can trigger all sorts of worries:<br />

a change in lifestyle, reducing social, recreational and<br />

employment opportunities, loss of spontaneity and so on.<br />

The Department of Transport view it a little differently. They<br />

have the responsibility to ensure our roads are safe and that<br />

those with a licence to drive are actually safe to do so.<br />

Mandatory reporting legislation has been in effect for several<br />

years, but there are new laws and clearer guidelines for health<br />

professionals doing the assessing. This article attempts<br />

to answer some of the questions frequently asked about<br />

mandatory reporting requirements.<br />

Why new driver medical standards?<br />

Changes to driver medical standards reflect current<br />

knowledge. A major literature review was conducted by the<br />

Monash University Accident Research Unit, providing an<br />

evidence base for the effects of various medical conditions<br />

on driving ability and associated crash risk. They have been<br />

collecting data for many years now. This has contributed<br />

to the development of standards in the driver assessment<br />

process and recommendations.<br />

What type of health conditions might affect ability to<br />

drive safely?<br />

Driving is a complex task requiring good perception,<br />

judgement and response times as well as physical capability.<br />

Certain medical conditions, as well as some treatments<br />

and medications, may negatively impact on driving ability.<br />

Mandatory reportable medical conditions include any<br />

medical condition, mental disorder or physical disability that<br />

may impair a person’s ability to drive safely. Common<br />

examples include:<br />

• Neurological conditions including MS and epilepsy<br />

• Diabetes<br />

• Cardiovascular conditions<br />

• Sleep disorders<br />

• Alcohol and other substance misuse<br />

• Vision and eye disorders<br />

The presence of disease or a health condition does not mean<br />

a person cannot drive. The standards focus on functional<br />

ability, which is the impact on driving ability, rather than<br />

diagnosis. These guidelines have been revised with respect<br />

to multiple medical conditions and age-related change.<br />

18<br />

<strong>Summer</strong> 20<strong>15</strong> The MS Society of Western Australia


Drivers have a legal responsibility to report their<br />

medical condition/s<br />

By legislation, drivers are required to report any medical<br />

concerns that may impact on their long term driving ability.<br />

When a person’s licence is due for renewal, or at initial<br />

application, drivers may be asked to complete a declaration<br />

regarding their health. Based on this information the licensing<br />

authority can request a medical examination. All drivers have<br />

a duty to declare their health status to the examiner. Failure<br />

to report impairment to the driver licensing authority can have<br />

insurance and legal consequences.<br />

Commercial and private driving standards<br />

Drivers of commercial vehicles undergo more stringent<br />

standards because of the increased associated risk. This<br />

may have employment implications for some drivers. The key<br />

question: is there a likelihood the person will be unable to<br />

control the vehicle and act or react appropriately to the driving<br />

environment in a safe, consistent and timely manner?<br />

How to report a medical condition (not just for people<br />

with MS)<br />

You can report a medical condition by either:<br />

• Filling out the notification of a medical condition form found<br />

on: transport.wa.gov.au/licensing/19056.asp<br />

OR<br />

• Writing a letter that includes:<br />

• Full details of the medical condition you are reporting;<br />

• Your full name and address;<br />

• Your date of birth;<br />

• Your daytime contact numbers; and<br />

• Your driver’s licence number<br />

• And post it to:<br />

Mandatory Reporting Team<br />

Department of Planning and Infrastructure<br />

GPO Box R1290<br />

PERTH WA 6844<br />

The process<br />

Once written notification has been received, the Department<br />

of Planning and Infrastructure (DPI) will review the information<br />

against the Standards and inform you in writing of any action<br />

required. Possible actions include:<br />

• No action required<br />

• Your driver’s licence needs to be updated to reflect relevant<br />

licence conditions, e.g. wearing prescription glasses<br />

while driving<br />

• You may be required to undertake and pass a medical<br />

assessment. They will advise you who to see for this<br />

• You may be required to take and pass a practical<br />

driving assessment<br />

You can call the <strong>MSWA</strong> OT Department on 9365 4888 if<br />

you have any further queries or concerns.<br />

Reference: Austroads (2012) Assessing Fitness To Drive for<br />

commercial and private vehicle drivers, Austroads Ltd Sydney<br />

multipleshirts<br />

The MS Society of Western Australia <strong>Summer</strong> 20<strong>15</strong> 19


Mothering young children –<br />

challenging, yet beneficial<br />

Astrid Plumb-Parlevliet<br />

Children in their early childhood years place a high physical<br />

demand on their mothers and as a result these mothers are<br />

predominantly preoccupied with tasks related to their young<br />

children. Mothers with multiple sclerosis can have limited<br />

physical and emotional capacity. It is important for these<br />

mums to maintain their energy. This study looked at the<br />

experiences of mothers with multiple sclerosis, who had at<br />

least one child in their early childhood years. Ten mothers,<br />

all with relapsing-remitting multiple sclerosis, participated<br />

in this qualitative study; four major themes and eight<br />

sub-themes were uncovered.<br />

Theme<br />

• Changing life perspective • Balancing life with MS<br />

• Having children • Peer contact<br />

Sub-themes<br />

• Avoidance<br />

• Seize the day<br />

• Conserve energy • Support network<br />

• Pregnancy decision • Dealing with motherhood<br />

• Feeling judged<br />

• Sense of belonging<br />

These themes are a reflection of all of the study’s interviews<br />

combined. It tells the overall story of living with multiple<br />

sclerosis as a mother of young children.<br />

Theme 1: Changing Life Perspective<br />

After being diagnosed with MS, people go through a change in<br />

life perspective. Initially the participants tried to avoid thinking<br />

and dealing with their MS diagnosis. MS is an unpredictable<br />

illness and therefore avoidance assists in maintaining<br />

emotional well-being. Avoidance has been found to be an<br />

acceptable coping strategy whilst MS has a mild influence<br />

on life. Many of the participants avoided their MS diagnosis<br />

by not disclosing their illness to others and/or by avoiding the<br />

MS Society. MS is still in the back of their mind; nevertheless,<br />

it is not actively present in daily life. After a while life with<br />

MS is accepted and the focus in life is changed to make life<br />

worthwhile. It is important to seize the day.<br />

By not dwelling on MS, by living consciously whilst making<br />

informed choices, and by doing things for themselves, the<br />

participants showed the importance of seizing the day.<br />

Changing their life perspective assisted them to stay mentally<br />

strong and hopefully this will assist them in staying physically<br />

strong as well.<br />

Theme 2: Balancing Life with MS<br />

Staying physically strong is important for people with MS.<br />

Impaired physical functioning has a major impact on life and<br />

this impact needs to be dealt with appropriately. Additionally,<br />

stressful events increase the probability of relapse and<br />

therefore need to be kept to a minimum. Consequently,<br />

balancing is an important part of life for people with MS. The<br />

participants talked about the importance of conserving their<br />

energy and having a support network available for balancing<br />

life with MS. It was hard to manage and conserve energy,<br />

however, most of the participants tried to limit the number of<br />

activities they engaged in. Most support was provided by the<br />

partner of the participants. Yet other people stepped in when<br />

the partner could not cope.<br />

Theme 3: Having Children<br />

MS symptoms can lead to physical and emotional coping<br />

difficulties, which influence the motherhood experience. The<br />

participants shared their experiences of having children. They<br />

talked about the decision to become pregnant and how they<br />

experience dealing with motherhood. Some of the participants<br />

were already mothers when they were diagnosed with MS.<br />

For the ones that did not yet have children before being<br />

diagnosed, it sped up the decision to have children. However,<br />

most reduced the number of children they originally wanted.<br />

20<br />

<strong>Summer</strong> 20<strong>15</strong> The MS Society of Western Australia


While many of the participants chose to become pregnant<br />

after their MS diagnosis, they found it hard to deal with MS<br />

and motherhood tasks, as MS affected their ability to mother.<br />

Planning was important to combat physical issues and fatigue.<br />

Activities had to be put in place to occupy the children when the<br />

mother did not feel well; however, it was not always achievable.<br />

The experience of motherhood was influenced more by the<br />

severity of MS than by the number of children. Mothers<br />

were not able to look after their children when they were<br />

experiencing new symptoms due to a relapse or when old<br />

symptoms briefly resurfaced. Fatigue also played a part in<br />

their ability to be a mother.<br />

During these times, being a mother of young children was<br />

hard as the children were not able to understand their<br />

mother’s illness and still required attention. The mothers with<br />

one child, when severely affected by their illness, were found<br />

to struggle more compared to mildly affected mothers with a<br />

number of young children.<br />

Nevertheless, being a mother enriched and provided purpose<br />

to the participants’ lives. Children kept their mother’s mind<br />

off MS as they were too busy looking after their children.<br />

As long as there is adequate support available during illness<br />

complications and life with MS is properly balanced, the<br />

psychological benefits of being a parent of a young child<br />

could outweigh the physical demands. Being a mother could<br />

therefore be beneficial to people with MS.<br />

Theme 4: Peer Contact<br />

The participants considered contact with peers important.<br />

The participants relayed their feelings of being judged by<br />

the community and occasionally by friends. All participants<br />

relayed that it was easier to relate to other people with MS. It<br />

gave them a sense of belonging and reduced their loneliness.<br />

Furthermore, it could prevent them from comparing themselves<br />

to the ideal mother and thereby reduce stress. By facilitating<br />

more contact between peers, people with MS may be able to<br />

better their mental health.<br />

Research Conclusions<br />

The findings indicated that a change in life perspective was<br />

initially difficult for women with MS, yet necessary for their<br />

psychological well-being. They had to be able to balance life<br />

with a debilitating chronic illness in order to stay physically<br />

and mentally strong. Mostly they required support from family<br />

members to assist them with this.<br />

Having children brought physical difficulties; however, it<br />

assisted them in staying mentally strong. A reason also<br />

considered whilst making the decision to have children.<br />

To combat the feeling of loneliness, contact with peers was<br />

considered to be normalising. Changing their life perspective,<br />

adequately balancing life and MS, having children and peer<br />

contact assisted these women in their pursuit to live contently<br />

despite MS.<br />

Hereby I would like to thank all the mothers who participated<br />

in this study. I am honoured that you were willing to share<br />

your experiences with me. Thank you for your time, especially<br />

because life as a mother who has MS and young children is<br />

already hectic enough. It was incredible to hear your stories.<br />

Your experiences encouraged me.<br />

I would also like to thank Sue Shapland, Louise Hatter and<br />

Lisa Papas from The Multiple Sclerosis Society of Western<br />

Australia (Inc). Thank you for assisting me with participant<br />

recruitment. Without your support I would not have been able<br />

to undertake this study. Your support for people with MS is<br />

inspirational.<br />

This study was undertaken as a requirement for the course<br />

of Bachelor of Arts (Psychology) Honours at the Faculty of<br />

Health, Engineering and Science of Edith Cowan University.<br />

<strong>MSWA</strong> Nurse Marisa Pinerio retires<br />

It is with mixed emotions that I announce that our young at<br />

heart Marisa Pinerio retired in November and is now free to<br />

amble down the path of being a grandmother and retiree!<br />

Marisa has been an amazing part of the <strong>MSWA</strong> Nursing<br />

Team for 10 years. She brought so much laughter and fun<br />

to us all, not only in the nursing team, but in our MS Family.<br />

Her wealth of knowledge, compassion and understanding<br />

benefited so many people affected by MS and those working<br />

in the area of MS in Australia. Her passion for supporting<br />

and mentoring her peers, and being there for all, will be<br />

missed. We hope that she will now put that abundance of<br />

energy into enjoying the next stage of her life.<br />

Please join me in wishing her all the best.<br />

Sue Shapland<br />

The MS Society of Western Australia <strong>Summer</strong> 20<strong>15</strong> 21


What do you say when you’re<br />

‘Back in the Game’?<br />

Rosalind Joffe<br />

It happens easily and too often. You try to explain that<br />

you can’t do something (that you could do until now) and<br />

the blank stares, questions or snide comments leave you<br />

feeling isolated, frustrated or even guilty. You know they’re<br />

wondering, “But you look the same. What’s changed?”<br />

Or maybe you’ve already said you’re not as ‘able’ to get<br />

something done or even to show up but some people still<br />

expect you will. Don’t you look the same? So reluctantly, or<br />

maybe angrily, you remind them what you’ve already told<br />

them. I have been diagnosed with multiple sclerosis.<br />

And, then, if you’re lucky enough, the symptoms are no longer<br />

an issue and you’re back to whatever baseline you live in and<br />

can return to what you could do. But now you’re stumped.<br />

How do you explain, “I’m back in the game?” But you look the<br />

same. It’s complicated. Enough to make you want to ignore<br />

you feel better and keep going as you were.<br />

Let’s face it. Nothing about this life makes sense to you.<br />

No surprise that others don’t get it, either. As one client<br />

complained, “Things are great. I feel like myself again, even<br />

if that’s not the big guy I was before I got sick, it’s better than<br />

what I’ve been lately. But how do I tell my boss that he can<br />

trust me to get things done again when I’ve been missing in<br />

action for a month? Or tell my wife that I can take the kids to<br />

their soccer matches this weekend when I’ve been sleeping<br />

whenever I haven’t been working?”<br />

If only there could be a simple explanation for why you can<br />

do something today that wasn’t possible yesterday? Oddly<br />

enough, the most confusing moments are often when you<br />

say, “Hey, I can do this now!” If you can offer a clear medical<br />

reason, it’s easier for others to understand. But with chronic<br />

stuff, that’s rarely the case.<br />

So what can you do other than pretend you’re still living with<br />

those debilitating symptoms? A great place to start is within<br />

you. When you find a way to accept that you live with these<br />

changes, you’ll be more likely to reduce the drama with others<br />

and that helps you to be more effective.<br />

But that kind of acceptance can be difficult. And it, too,<br />

can wax and wane as life throws you the curve balls. But<br />

when you focus on the concrete, what you say to others, you<br />

can feel a sense of pride that this is a place where you can<br />

take charge.<br />

So that’s why I’m sharing four things to consider when you want<br />

others to know you’re ready and able to get ‘back in the game’:<br />

• Acknowledge you’ve been disappointed that you’ve been<br />

unable to meet your commitments and, if relevant, express<br />

gratitude for their help by picking up the slack.<br />

• Focus on what you can do now rather than an exhaustive<br />

explanation of the nature of the disease.<br />

• Make it clear that because the symptoms change<br />

unpredictably it’s impossible to know if and when it might<br />

change again but if it does, you’ll keep them in the loop as<br />

best you can.<br />

• Keep the drama to yourself and stick with the good news<br />

even if you don’t feel it.<br />

No, this isn’t easy and it’s often frustrating, demoralising and<br />

reduces even the most positive to tears. But I’ve found that<br />

the better you get at communicating clear information that<br />

keeps others informed when and where they need to know,<br />

the better you’ll feel about the things you can’t change.<br />

About Rosalind:<br />

I have lived with unpredictable and debilitating symptoms for<br />

over 35 years. In founding ciCoach more than <strong>15</strong> years ago, I<br />

built on my own experience facing the on-going challenges of<br />

working while living with chronic illnesses (including multiple<br />

sclerosis and ulcerative colitis).<br />

Difficult health led me to make ‘switchback career turns’ so I<br />

could continue to work to the best of my abilities. I struggled<br />

to redefine myself and reinvent what I could do. It was lonely<br />

and difficult and the journey would have been a lot easier if I<br />

had help.<br />

My work is dedicated to sharing what I’ve learned along the<br />

way. I am passionate about giving others the support and<br />

guidance they need to create the success that they desire so<br />

they can thrive, not just survive in their lives.<br />

You can find more articles at cicoach.com/blog/<br />

22<br />

<strong>Summer</strong> 20<strong>15</strong> The MS Society of Western Australia


The Sailing Sclerosis Project:<br />

Oceans of Hope<br />

Leonie Wellington<br />

Oceans of Hope is a project designed to educate, promote<br />

and change the perception of MS worldwide by inviting people<br />

living with MS to jump aboard on a leg of a round the world<br />

sailing trip. I was fortunate enough to sit down with one of our<br />

Members, Brenden Edwards, who made the cut and completed<br />

the leg from Cairns to Darwin via the Torres Strait Islands.<br />

How did you find out about Oceans of Hope?<br />

I saw it on my wife Sharon’s Facebook and put in an application<br />

the next day. That was in February this year. The founder said<br />

that one in four applicants made it through. There were only<br />

12 crews of six over the whole world journey. They have a<br />

big matrix of how they pick out the crew based on all the<br />

applicants’ information. It was a bit like winning the Lotto!<br />

What did you expect to get from of the experience?<br />

I don’t know, I was just open-minded. It was more of an<br />

adventure and a good excuse to get out of the winter down<br />

here and into the sun. It was quite good. I learned a lot<br />

because there were a couple of other Aussie blokes on the<br />

boat and I learned a few things about what is available in<br />

Australia I didn’t know about. It was good from that aspect to<br />

network a bit. It ended up being a good all-round experience.<br />

What route did your trip take?<br />

We left from Cairns in Queensland and finished in Darwin in the<br />

Northern Territory. We passed Cape Tribulation, around the top of<br />

Cape York and stopped at Thursday Island for a couple of days.<br />

How many people were on the boat?<br />

From Cairns to Thursday Island there were two skippers, a<br />

father and son, from Denmark and there were six MS crew. We<br />

had three Aussies, an American, a Belgian and a Dane. Then in<br />

Thursday Island we picked up a third skipper Mikkel who is also<br />

the founder of Oceans of Hope and a doctor. When you do an open<br />

water crossing like we did across the Gulf of Carpentaria they<br />

always like to have a doctor on board. I still keep in touch with<br />

a couple of the guys. We were lucky to be given the opportunity<br />

and you can make friends for life from these experiences.<br />

What was the highlight of the trip for you?<br />

The trip was a bit over two weeks. It was just the all-round<br />

experience. It was so nice being out on the water and the weather<br />

was warm. You couldn’t say that we had a bad time compared to<br />

previous crews. One of the guys on our crew had come across<br />

from Auckland to Sydney and he said there were massive swells<br />

and it was freezing cold whereas we were in board shorts and<br />

t-shirts. We had our watches and duties to do but it wasn’t<br />

like they were really busting your chops. Once all the sails and<br />

everything were set up they didn’t very often change them unless<br />

the wind changed. It was a good experience basically.<br />

What was the biggest challenge?<br />

It wasn’t so much a challenge for me, probably for some of<br />

the other people, as I don’t sleep a lot. You had to do your duty<br />

or watch at one in the morning, four in the morning or six in<br />

the morning. Two would go on watch for three hours every six<br />

hours unless someone was seasick and unable to do it. Some<br />

people who like their sleep were a bit sleep deprived. I used<br />

to stay up even when I wasn’t on watch anyway because it<br />

was nice being up on the back of the boat in the fresh air.<br />

Down in the cabin there is diesel fumes and noise so it was<br />

better to be up and out in the fresh air. What time your watch<br />

fell determined what your duties would be. Getting breakfast,<br />

lunch or dinner ready was very claustrophobic, hot and stuffy<br />

downstairs in the galley. The cabins were for two people and<br />

were small and basic so space was at a premium.<br />

What was the main objective of Oceans of Hope?<br />

To raise awareness about MS and to show that people with<br />

MS are just as capable as anyone else. They certainly got<br />

plenty of coverage everywhere they went. They did taster<br />

sails in the ports they stopped in for people with a higher level<br />

of disability. Mikkel the founder was inspired by a patient who<br />

was diagnosed with MS and was about to retire and lamented<br />

that he wouldn’t be able to follow his plans to go sailing<br />

because of the diagnosis. Mikkel found a sponsor in Biogen<br />

that helped them purchase the boat and cover running costs.<br />

All we had to pay for was our food and the cost of getting to<br />

and from the ports our leg started and finished from.<br />

Is there any lasting thing you have taken from the trip<br />

back into your everyday life?<br />

You can do things when you set your mind to them. There<br />

were times when things were quite hard on the boat. You<br />

were up at all odd hours, it was quite hot and living in such a<br />

confined space with so many people you need to be flexible.<br />

You had to be willing to live with people’s different habits.<br />

You have to be accepting and willing to compromise. Part<br />

of the journey is to put yourself out there and promote the<br />

experience and share the word. Public speaking is not really<br />

my thing but I have talked to the outreach group and at my<br />

daughter’s school. People have been good about it. They ask<br />

lots of questions and want to know. My daughter’s class is<br />

year two/three students and they don’t know what MS is so<br />

at least they know a little bit about it now. It is one of the best<br />

things I have done in my life.<br />

If you would like to read more about Oceans of Hope visit<br />

the website: sailing-sclerosis.org<br />

The MS Society of Western Australia <strong>Summer</strong> 20<strong>15</strong> 23


Help us stand up to MS in 2016!<br />

The Multiple Sclerosis Society of WA (<strong>MSWA</strong>) holds many events throughout the year. Help us stand up to MS by<br />

joining us at one of our many events - you can volunteer or take part!<br />

20 February 6 February 27 February<br />

20 March<br />

ARMADALE<br />

ALBANY<br />

BUNBURY<br />

7 May 22 May 25 May 17-19 June<br />

Date<br />

Saturday, 20 February<br />

Perth<br />

Saturday, 6 February<br />

Perth<br />

Saturday, 27 February<br />

Albany<br />

Sunday, 20 March<br />

Bunbury<br />

Wednesday, 25 May<br />

Perth<br />

Event<br />

Stadium Stair Race The Stadium Stair Race is an exciting event at Domain Stadium now in<br />

its second year. The unique course will take you up, down and through the iconic venue, back<br />

of house and exclusive areas of the venue, finishing on the hallowed turf under the stadium<br />

lights! This event is unique to WA and the only one of its kind here in Perth. Participants will be<br />

supporting Western Australians living with MS.<br />

Swim for MS - Armadale A four-hour relay challenge. All funds raised enable <strong>MSWA</strong> to continue<br />

to provide support and services to people living with MS in Western Australia.<br />

Swim for MS - Albany A ten-hour relay challenge. All funds raised enable <strong>MSWA</strong> to continue<br />

to provide support and services to people living with MS in the Great Southern Region.<br />

Swim for MS - Bunbury A ten-hour relay challenge. All funds raised enable <strong>MSWA</strong> to continue<br />

to provide support and services to people living with MS in the South West.<br />

World MS Day is our largest street appeal of the year. Join us in the Perth CBD and help raise<br />

funds to provide support and care to those living with MS.<br />

(08) 6454 3131 events@mswa.org.au mswa.org.au<br />

24<br />

<strong>Summer</strong> 20<strong>15</strong> The MS Society of Western Australia


The law of intention<br />

Dr Andrew Ong<br />

“How can the cosmic religious experience of men like<br />

Democritus, Francis of Assisi, and Spinoza (atheists and saints),<br />

be communicated if it cannot lead to a definite conception of<br />

God or to a theology? It seems to me that the most important<br />

function of art and of science is to arouse and keep alive this<br />

feeling in those who are receptive.” Albert Einstein<br />

Inherent in every intention is the desire to have it, along with<br />

the mechanics to make the object work and the universal<br />

promise for its fulfilment. Intention and desire, along with our<br />

infinite potential, provides us with the unlimited organising<br />

power that produces order in our lives.<br />

When we sow the seeds of intention in the field of infinite<br />

potential we trigger the immeasurable organising catalyst<br />

of these universal forces to work for us and to then realise<br />

our goal. In nature, as there is in the universe, information,<br />

intelligence and energy is everywhere, and it is in this quantum<br />

field of possibilities that lies the magic of pure consciousness<br />

and supreme intelligence.<br />

For instance within every flower, every blade of grass, a butterfly<br />

or a bee – and indeed you and me – lies a part of that supreme<br />

intelligence, with all of this infinite energy and massive amounts<br />

of information. In fact the only difference between each creation<br />

is the required energy and the amount of information.<br />

In each case the basic components may be exactly similar in<br />

that they all contain molecules and atoms, minerals, proteins<br />

and vitamins. Life as we know it then is woven from this clump<br />

of raw material, and therein lies the essential difference.<br />

This is the information and the amount of intelligence required<br />

to make it possible, but it is no less wonderful; be it a baby or<br />

a puppy, everything is subjective.<br />

We experience this field of possibility subjectively as our<br />

own distinct thoughts, our inner feelings and emotions, our<br />

memories that please and sometimes haunt us, what drives<br />

us and the beliefs that contribute to our worldview. Ancient<br />

sages have long understood this complex connection between<br />

our lives and all of creation (the so-called six degrees of<br />

separation between each of us).<br />

For instance a single cell in the human body is capable of<br />

performing six trillion activities per second. The human body,<br />

likewise, can play a guitar while listening to the beat of the<br />

drum, the singer, while digesting food, handle waste, ingest,<br />

digest, metabolise, secrete enzymes, and react to hormones,<br />

kill germs and even make another life (when pregnant), all at<br />

the same time!<br />

And so it is that a single-minded focussed intention which<br />

is unbending in its fixity of purpose cannot be stopped.<br />

Its power is infinite and almighty. What you do with all of<br />

this unshakeable serenity and intense passion will catapult<br />

you into the realms of the immortals, the role models and<br />

achievers we most admire. There is no limit to your intention;<br />

there is no cap placed on your potential, there is only the<br />

promise of fulfilment if you believe in yourself.<br />

MS Mega Home Lottery<br />

The stunning Webb & Brown-Neaves Show Home in City<br />

Beach worth $1.6 million or $1.35 million cash? That was the<br />

enviable decision April Rose May had to make as the lucky<br />

Grand Prize Winner of the recent MS Mega Home Lottery. Her<br />

big win was the icing on the cake as it came just two days after<br />

finding out that she was expecting her first child. Although<br />

April thought the Grand Prize Show Home was beautiful,<br />

she chose the $1.35 million cash prize to secure a future for<br />

her growing family. The lottery sold out in just 13 days and<br />

over 4,000 people shared in the $3.7 million prize pool which<br />

included cash, luxury cars, overseas holidays, electronic<br />

prizes and much more. For the first time ever, there were not<br />

one but four lucky winners of the $50,000 Cash Bonus Prize.<br />

Thank you to everyone<br />

who supported this<br />

major fundraiser by<br />

purchasing a ticket in<br />

this MS Mega Home<br />

Lottery. All proceeds<br />

go towards funding research<br />

into the cause and cure for MS, and providing vital care<br />

and support services to people living with MS. You won’t<br />

want to miss out on the next Mega Home Lottery; the Grand<br />

Prize Winner will be our first ever instant multi-millionaire!<br />

Pre-register your interest at mslottery.com.au and join us on<br />

Facebook at MS Mega Home Lottery.<br />

The MS Society of Western Australia <strong>Summer</strong> 20<strong>15</strong> 25


Ocean Ride for MS 20<strong>15</strong><br />

The sun was shining brightly as 1,512 riders came together for<br />

the sixth annual Ocean Ride for MS event held on 18 October.<br />

Following the beautiful coastline from Fremantle to Hillarys,<br />

riders chose between the 10km, 30km, 50km or 70km<br />

courses. This year saw the addition of a new category – the<br />

Enervit 90km challenge – tackled only by the bravest of the<br />

brave. Whichever the category, participants all came together<br />

and raised an incredible $187,946 for <strong>MSWA</strong>. The top three<br />

fundraising teams were ‘For Pete’s Sake’ with $20,670 raised,<br />

followed by ‘No MSing Around’ on $16,509 and ‘Team Troppo’<br />

on $14,004. Teams No MSing Around and Team Troppo were<br />

top fundraisers last year as well and it was great to see them<br />

bring their ‘A-game’ again this year. There were also some<br />

new faces in the crowd, one of them being 19 year old Eamon<br />

Guilfoile. It was Eamon’s first time participating in the bike<br />

event and not only did he raise $620, he also came well<br />

prepared with a specially designed tandem bicycle. Eamon<br />

has cerebral palsy and participated with his amazing support<br />

group who took turns cycling him to the finish line. Team leader<br />

of his support group Moira Wright said, “Eamon really likes to<br />

be involved in the community and in anything active. He has<br />

been surfing, abseiling and sailing. Biking is his new sport; he<br />

goes out on his bike a couple of times a week.”<br />

Eamon (centre) with his support group.<br />

“He really has a fabulous team who support him and enjoy<br />

taking part in activities with him.” There was more fun to be<br />

had at the finish line at the City of Joondalup Event Village<br />

at Whitfords Nodes, Hillarys where participants were greeted<br />

with a carnival atmosphere. The Talia Hart Duo provided<br />

the tunes as riders enjoyed much needed massages and<br />

munched on goodies from an array of food vendors, while the<br />

kids enjoyed a bouncy castle, face paintings, an animal farm<br />

and much more. Thanks go to our Events Team, our many<br />

volunteers and event sponsors for making the Ocean Ride for<br />

MS event great fun for a great cause.<br />

Members Ride Off<br />

Our Members took part in their own version of the bike ride<br />

this year when they competed in the Stationary Bike Ride<br />

Challenge! 54 Members from Wangara, Beechboro, Wilson,<br />

Southside and Albany participated and raised over $6,500 for<br />

people living with MS in Western Australia. The challenge took<br />

place during regular physiotherapy sessions and saw Members<br />

competing in teams to cycle the furthest distance. Team<br />

‘Southside Dragons’, from the Rockingham Outreach Centre,<br />

were the standouts this year raising $4,462. Team Member<br />

Sharon Lamont was diagnosed with relapsing remitting MS<br />

last year and had participated in Ocean Ride for MS 2014 with<br />

her family. While she wasn’t able to participate in the main<br />

event this year, she wanted to stay involved in some way and<br />

decided to sign up for the Stationary Bike Ride Challenge. She<br />

said, “I try and do one thing every year. The social aspect of<br />

participating is fun and I’m also a bit competitive so it’s good to<br />

get involved. It’s also good to meet other people with MS and<br />

to find out what their stories are.” Congratulations and well<br />

done to all Members who participated!<br />

26<br />

<strong>Summer</strong> 20<strong>15</strong> The MS Society of Western Australia


Santa’s Gift<br />

Ros Harman<br />

When my daughter was a toddler, I lied to her. I told her Santa<br />

Claus was real. I voluntarily participated in the annual global<br />

December deception. When she was two years old it was an<br />

easy deception, reinforced on TV, in shops, and everywhere<br />

she looked for weeks leading up to the big day. She happily<br />

believed that Santa snuck into our house on Christmas Eve<br />

and left presents under the tree.<br />

But my daughter is smart. By the time she was four she had<br />

figured out how the world worked and she knew how to make<br />

the most of it. That was the year she dictated a letter to Santa<br />

that read:<br />

“Dear Santa, I want a pink dolly for Christmas not a yellow<br />

one. If you’re a good boy you can give it to me. Amen.”<br />

I’ve kept that letter. I love the fact that at such a young age she<br />

already knew what she wanted and wasn’t afraid to ask for it.<br />

I love her assertiveness – she wasn’t going to let anyone call<br />

the shots, least of all an ageing, overweight, hairy old man<br />

inappropriately dressed for summer in a silly red pantsuit. I<br />

love her judicious nod to the possibility of a higher authority<br />

at the end.<br />

Twenty years on, my daughter’s attitude hasn’t changed<br />

but she directs her requests to me now instead of Santa.<br />

She usually asks me for something she needs but expects<br />

a surprise gift too. A Santa gift, we call it. The Santa gift<br />

should be something luxurious, indulgent, highly desired and<br />

preferably expensive. Clothes, shoes, perfume or jewellery<br />

are all acceptable.<br />

My daughter is studying medicine in Queensland now and<br />

living on the meagre government student allowance, so her<br />

Christmas present requests are usually pragmatic. This year<br />

I have been asked for money for a second-hand fridge. I’m<br />

happy to help her out. I see it as an investment.<br />

She came home for Christmas and while I don’t begrudge<br />

paying for her airline ticket because I love to see her, I did have<br />

to take a big breath when I saw the price. I was still holding<br />

my breath two weeks later when she rang to announce she<br />

had changed the flight to an earlier one, isn’t that exciting?<br />

And by the way, would I mind paying the extra $140 it cost?<br />

I’m still hyperventilating.<br />

This time she is bringing her boyfriend with her which means<br />

a gift for him too. He has the same name as a member of the<br />

Royal family, but that’s only a coincidence and I won’t let it<br />

prejudice me. I’ve checked him out on Facebook of course, and<br />

I know he likes cars, which is a good thing because my smart,<br />

tough, assertive little girl needs help in that department. Until<br />

recently she thought the temperature gauge was an indicator<br />

of the weather. It gives me great peace of mind to know that<br />

she has someone making sure there is water in the radiator,<br />

and checking her tyres regularly. Unfortunately I can’t afford<br />

to buy him a car.<br />

It won’t be too long before my daughter graduates and starts<br />

working and earning a good salary. Maybe one day she will<br />

ask me what I want for Christmas and I’ll ask her for money<br />

for a fridge.<br />

Perhaps she will buy me a Santa gift as well. Books, chocolate<br />

and alcohol are all acceptable. Amen.<br />

The MS Society of Western Australia <strong>Summer</strong> 20<strong>15</strong> 27


That’s life<br />

with Narelle<br />

Narelle Taylor<br />

It felt like I imagine winning Lotto would feel like. My daughter,<br />

Bree, suggested we go away for a few days. I thought she had<br />

Treendale Gardens in mind. I love it at Treendale. But instead<br />

she got a great price on the internet for us to go to Bali. It<br />

sounded wonderful, but I’d heard that Bali was not wheel-chair<br />

friendly. I decided I’d be happy to stay in the resort if I couldn’t<br />

use the streets. We agreed to go.<br />

Neither of us confided to the other what we looked forward<br />

to most in our few days holiday in Bali. I was sure that Bree<br />

would enjoy the time off from ‘mothering’ duties but worried<br />

that she might find caring for me an even bigger chore.<br />

I looked forward very much to the change in environment;<br />

to being able to make conversation about different things to<br />

what usually filled in my day here in the aged care facility.<br />

Most people here live in a very small world and so many<br />

residents have such similar interests that conversation is<br />

quite repetitive. Most forget what they have spoken about<br />

within hours anyway.<br />

I loved talking all day with my daughter. She treated me like<br />

family. The Balinese people were so obliging and agreeable<br />

with all that we needed them to do. They would dash out of<br />

their shops and move the motorbikes off the footpath so we<br />

could pass effortlessly.<br />

We went, one day, to have a manicure and the young Balinese<br />

girl pulled her stool up in front of my wheelchair. She placed my<br />

hands, outstretched on the cushion on my knees. In her best<br />

English, with her palms together, she implored “Stop shaking”.<br />

I knew that I’d never be able to explain multiple sclerosis and<br />

its tremor to her so I just smiled inanely and hoped she’d<br />

manage. She did.<br />

Bree and I managed extremely well in our ground floor resort<br />

unit that had a wheelchair accessible bathroom. A simple<br />

phone call to reception was all that was needed to have them<br />

bring a shower chair immediately. We managed faultlessly<br />

and were never too late for breakfast. I’ve got an extra three<br />

kilos of bodyweight to prove it.<br />

The staff at the resort used trolleys to move linen, food and<br />

cleaning gear around so there were ramps everywhere. My<br />

wheelchair and I needed ramps and Bree is sufficiently strong<br />

enough to do the pushing required. The staff would kindly<br />

push me, or carry bags, if they were impeding my daughter’s<br />

pushing. Moving around within the resort seemed, and was,<br />

so easy. Well, for me, it was easy. Bree didn’t complain though.<br />

We went on scenic walks along the paved road on the<br />

beachfront and would choose our restaurant for dinner and<br />

for viewing the sunset. I remembered the tropical sunsets<br />

we’d absorbed when we’d lived on board thirty years ago. I<br />

really enjoyed watching the golden sun, on the horizon, drop<br />

down behind the silver sea whilst I sipped my gin and tonic<br />

in the balmy night air. To anticipate the thunderous glory of a<br />

red sunrise was a feeling, so memorable and so reassuring.<br />

Afternoons in the pool, at the pool bar, were great fun since I<br />

hadn’t been swimming for about ten years and being gripped<br />

by thirst didn’t mean that I’d walk funny because I didn’t even<br />

need to attempt to walk. My orange inflatable pool ring may<br />

well have been a tad déclassé but was just so comfortable for<br />

me to ‘bob’ about in and Bree was able to tow me to and from<br />

the underwater bar stool. We’d carefully planned our entry<br />

and exit from the pool and, no doubt, would have managed by<br />

ourselves but resort staff always appeared from nowhere and<br />

provided excellent assistance.<br />

We didn’t go on tours or treks since neither appealed.<br />

Bree had done tours on previous visits and trekking in hot<br />

sun is something I’d never do. We actually filled in our day<br />

comfortably by swimming or shopping and getting dressed<br />

for dinner.<br />

We’d go ‘down-town’ for a little while of an evening and met<br />

some very interesting holiday-makers before we ambled back<br />

to our room. They found Bree and I to be quite a novelty, and<br />

we were. They seemed to think we were brave to attempt<br />

Bali in our condition and we probably were, but people with<br />

multiple sclerosis should be assured that it was as easy as<br />

anything else and that we shouldn’t let the disease stop us<br />

from travelling.<br />

28<br />

<strong>Summer</strong> 20<strong>15</strong> The MS Society of Western Australia


Volunteering with Dawn<br />

Dawn Burke, Volunteer Coordinator<br />

Hello everyone. What happened? Did we blink a second too<br />

long? I don’t know about you, but when I opened my eyes<br />

again to take in all the wonders around us, I suddenly realised<br />

it’s the end of the year again.<br />

Oh no! Christmas is upon us, which also means we will be<br />

embracing a New Year. Out with 20<strong>15</strong> and in with 2016. Time<br />

stops for no one, and this is the reason it is important to take a<br />

moment to stop and smell the roses at every chance you get.<br />

Since the last <strong>Bulletin</strong> I have attended two more Members’<br />

camps, with a couple of volunteers in tow. Woodman’s Point<br />

camp was held in September and it was a little bit chillier<br />

than normal. Lucky for us, one of the volunteers brought<br />

along extra rugs and scarves, which made the cold a little<br />

more bearable.<br />

The South West camp was held in November, again in<br />

Denmark. The setting is absolutely beautiful and a great time<br />

was had by all. The weather was also quite cool which allowed<br />

us to take advantage of having a fire in the old submarine<br />

mine. We even got to toast marshmallows in it. Yum!<br />

International Volunteers Day was celebrated this year on<br />

Friday, 4 December. It’s important to acknowledge and<br />

recognise every single person all over the world who gives up<br />

their valuable time to volunteer and this day allows all of us<br />

to do this. I would like to take this opportunity to personally<br />

thank each and every one of you, our MS Society of WA<br />

Volunteers, for doing what you do and doing it so well. A few<br />

of our volunteers attended a Garden Party at Government<br />

House; I will tell you all about it in the next <strong>Bulletin</strong>.<br />

The following day I attended a sumptuous morning tea to<br />

celebrate National Volunteers Managers Day. It was a very<br />

informative, fun and extremely enjoyable event. Volunteering<br />

WA spoilt all of us and I must say I was extremely appreciative<br />

of being included in this special morning. So I wish to thank<br />

you all for making my job so pleasurable. I love getting out<br />

and about and catching up with all of you whenever I can.<br />

Again I have welcomed a few new volunteers over the months<br />

and sadly a few have had to leave for various reasons. It doesn’t<br />

matter how long you stay with us, every bit of time given is<br />

valued and helps our Members and staff along the way.<br />

Thank you to all the volunteers who responded to the feedback<br />

forms. It is great to know you are happy and enjoying your<br />

time with us. Please feel free to pass on any suggestions you<br />

may have, as feedback is important and I value your opinions.<br />

By the time this <strong>Bulletin</strong> hits your mail boxes, we would have<br />

already enjoyed the Members, Volunteers and Staff Christmas<br />

party. If you were lucky enough to join us for the party you will<br />

already know what shenanigans went on, and if you weren’t<br />

so lucky and didn’t make it, well you will have to rely on the<br />

next <strong>Bulletin</strong> for happy snaps.<br />

So much is happening over the next few months and I hope<br />

you all keep safe and well throughout the silly season.<br />

I wish you all a Happy Christmas and I look forward to<br />

seeing you all in the New Year. Take care, Dawn.<br />

The MS Society of Western Australia <strong>Summer</strong> 20<strong>15</strong> 29


Wilson Outreach News<br />

Trip to the zoo Giselle Martin, Activity Coordinator<br />

This year at the Wilson Outreach Centre we have been<br />

experiencing a virtual ‘Trip around the World’. We have all had<br />

a great time engaging in games, activities, crafts and exotic<br />

cuisines as we ‘visited’ China, India, Alaska and our last stop<br />

this month, Africa.<br />

During November, as well as enjoying lunch for the race that<br />

stops the nation – Melbourne Cup, we had fun quizzes to get<br />

our brains ticking, animal bowling which got our competitive<br />

spirit going and ‘Pin the Tail on the Lemur’ to bring out our<br />

inner child! Additionally, some strikingly beautiful savannah<br />

canvas paintings were made and displayed in Outreach. And,<br />

we enjoyed a special screening of ‘The Gods Must Be Crazy’<br />

on the big screen, which gave us all plenty of laughs!<br />

On 24 November we had a very fun outing to Perth Zoo, with<br />

a special trip through the African Savannah section. Our own<br />

Jenny Sim had her very first ever trip to the zoo and loved it!<br />

She said, “I was thrilled to be asked on the zoo outing for<br />

our African theme. Out of all the animals I saw, I found the<br />

elephants the most fascinating.<br />

“One was having a pedicure while we watched and I couldn’t<br />

believe how still it stood! The whole experience was mind<br />

blowing and I really enjoyed the talk on the Orangutans,<br />

discovering the oldest ever recorded one is 63 years old and<br />

still alive and the mother/grandmother/great grandmother to<br />

most of the orangutans there!”<br />

She added: “We had a lovely picnic lunch watching the lemurs<br />

play, with the best part the crème caramel and peaches for<br />

sweets! This certainly won’t be my last outing to Perth Zoo<br />

and I would like to heartily thank the wonderful <strong>MSWA</strong> staff<br />

for taking us out to experience this amazing place.”<br />

Back at Wilson, our Members decorated colourful African<br />

drums which were used during the special African drummers’<br />

performance from the group ‘Akwaaba’. They came and<br />

performed and boy did they wow us with their vibrant and<br />

interactive percussion display! We had been looking forward<br />

to this performance all year and they didn’t disappoint!<br />

Members and staff joined in the rhythm-making with drums,<br />

xylophones and maracas. We sure made a lot of noise and<br />

probably drove the offices mad, but such wonderful memory<br />

making moments are worth it!<br />

The last few weeks we were all kept busy preparing for our<br />

annual Members’ and Volunteers’ Christmas Party. Always<br />

a wonderful highlight of the year and one everyone looks<br />

forward to. During December our halls were decked with holly<br />

and the Christmas spirit flowed before the big clean up and<br />

pack up for the big break.<br />

We are so proud of the wonderful year of great events<br />

and opportunities we have had for Members, our special<br />

friends, who visit here each week. I know that our<br />

Resource team is feeling inspired and ready to deliver<br />

another great year in 2016! See you all then.<br />

Community concert Nicola Ryan, Resource Coordinator<br />

I attended the Community Fundraising Concert for <strong>MSWA</strong><br />

which was held on Sunday, 9 August at the Don Russell<br />

Performing Arts Centre in Thornlie.<br />

This event was the dream of Joan Crossman who now knows<br />

dreams can become reality. Joan is a very special lady with<br />

a huge heart, especially when it comes to <strong>MSWA</strong>. Joan has<br />

two friends who are very dear to her living with MS, one being<br />

Jenny Sim, a Member who attends Wilson Outreach.<br />

Joan worked tirelessly to make this event a great success.<br />

She arranged for local businesses to sponsor the event which<br />

included LinC Canning Inc, Riverside Gardens Estate, Uniting<br />

Church Cannington, Solomon’s Flooring Balcatta, Duo 41 and<br />

Curves Gosnells.<br />

Along with <strong>MSWA</strong> staff, volunteers and Members also<br />

contributed to the concert by selling tickets, contributing<br />

artworks for the silent auction, arranging prizes for the raffles<br />

and selling goods on stalls.<br />

The concert would not have happened of course without<br />

so many wonderfully talented performers who willingly and<br />

voluntarily contributed their time to perform on the stage<br />

that afternoon. These acts included choirs from Victoria<br />

Park Apostolic Society and the Riverside Gardens Men’s<br />

Choir. Other acts were the ever-popular Duo 41, Sian and the<br />

Rivergums Ukes.<br />

Two acts that specifically focused on MS were Bill de Graaf<br />

singing a song written about MS and our very own Jenny<br />

reciting a poem entitled “My new Set of Wheels” by Darleen<br />

Uggen. With solo singer John Keinman and Jytee Larsen<br />

playing the Austrian Alpine Bells, the calibre of talent was<br />

exceptional!<br />

The concert was a memorable event with a capacity crowd.<br />

They raised an awesome $4,850. Joan presented the cheque<br />

to the Wilson Outreach Centre and we will use the funds to<br />

buy new height adjustable tables for the group.<br />

Joan said, “Knowing this will make a difference to those living<br />

with MS and in particular my best friend Jenny has definitely<br />

made all the hard work worth it.<br />

“Here’s to next year’s event being even bigger and better; and<br />

an extra special thank you from me!”<br />

30<br />

<strong>Summer</strong> 20<strong>15</strong> The MS Society of Western Australia


Bunbury and South West<br />

regional round up<br />

Treendale Gardens, Bunbury Update<br />

Paula Kennedy, Treendale Respite Coordinator<br />

Treendale Gardens celebrated the race that stops the nation,<br />

the Melbourne Cup, with a lovely luncheon for our residents,<br />

respite clients and staff. All of the residents were involved in<br />

designing and making their race day hats with support from<br />

Susie R and her helpers. We would like to thank two local<br />

businesses – Little Gems Australind and Spotlight Bunbury<br />

– who gave us generous discounts and donations. The hats<br />

were quite spectacular and our respite clients also joined in<br />

the fun by wearing the hats they had brought with them.<br />

Suzy B organised some Melbourne Cup sweeps and the<br />

prize-winners were pretty spread out though some were<br />

luckier than others!<br />

Our cook, Belinda, prepared a fabulous lunch that was<br />

thoroughly enjoyed by all in attendance. There was even<br />

some left over for the afternoon staff to taste!<br />

As you can see from the photo, a great time was had by all<br />

and people are already talking about next year’s celebration.<br />

Painting to regain my self-worth<br />

Louise Schutz<br />

My name is Louise Schutz and I live in the South West.<br />

I was diagnosed 18 September 1998. Feels like it was just<br />

the other day!<br />

In 2004 while on holiday in Mandurah I had a relapse. I just<br />

thought that the change of environment was why I was unable<br />

to do simple things like clean my teeth or feed myself! But<br />

I have been unable since then. Fortunately, I have a very<br />

supportive husband.<br />

I use a key guard on my keyboard so I can use my computer,<br />

as I have what they call an ‘intentional tremor’ but I so don’t<br />

do it deliberately! While I am still weight bearing, my walking<br />

is with the help of aids – walls, furniture, walking frame and<br />

even the floor!<br />

Michelle Payne rides Prince of Penzance<br />

to victory in Australia’s biggest race<br />

This is just one of the special events that have occurred at<br />

Treendale this year. Recently clients have had a bingo morning,<br />

those who enjoy it have been out shopping and there have<br />

even been visits to local dams and the Bunbury Wildlife Park!<br />

We are also in the process of refurbishing our residential<br />

communal area to lighten and brighten it up. It’s amazing<br />

what a difference paint colours can make!<br />

We are also excited, and very grateful to Bunnings Treendale<br />

and their staff, who are working on revamping our communal<br />

courtyards. Changes will make them more accessible for all<br />

our residents, which will be fabulous. We will display these in<br />

the next <strong>Bulletin</strong>.<br />

We regularly have vacancies in respite house and the<br />

adjoining three bedroom family holiday unit so if you are<br />

thinking of taking a sojourn to the country, please give<br />

Linda or Paula a call on 9725 9209.<br />

Recently with some help from my care support workers I have<br />

got into painting! Abstract is my specialty. I really enjoy doing<br />

this; the feeling of self-worth when people actually pay me<br />

to do a piece for them is so inspirational and it leaves me<br />

feeling worthy.<br />

The first three paintings I did for our bedroom, the ‘sunset’<br />

I did for a lady who paid me $120 and the last one which<br />

is quite large was commissioned by the Disability Services<br />

Commission and they paid me $495!<br />

Some people were lucky enough to be there and actually<br />

witness history being made — a Melbourne Cup that will live<br />

forever in the memory of Australian folklore. The rest of us must<br />

be content to live vicariously. But what a race it turned out to be!<br />

The winning horse was ridden by Michelle Payne, the first<br />

winning woman jockey in <strong>15</strong>5 years of racing. Her brother Stevie,<br />

the strapper, was an appealing young man with Down Syndrome<br />

who stepped up and had drawn the inside barrier for her and the<br />

‘Prince’. And the horse was a 100/1 long-shot on the tote.<br />

Then came the remarkable post-race<br />

interview when Michelle Payne told<br />

those who doubted her ability to “get<br />

stuffed.” How Aussie is that? It has<br />

to up there with the last words of Ned Kelly – “Such is life.”<br />

Member Athena Doropoulos, ably assisted by her carers Lisa<br />

and Jaci, was fortunate enough to attend the Melbourne Cup<br />

and witness this extraordinary event.<br />

The MS Society of Western Australia <strong>Summer</strong> 20<strong>15</strong> 31


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