Bulletin Magazine Spring 15

MSWA Bulletin Magazine Spring 2015

MSWA Bulletin Magazine Spring 2015


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ulletin<br />

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

Shannon Tori, an MSWA Member, was the highest fundraiser at the 20<strong>15</strong> Step Up for MS event, raising $10,560.<br />

She is pictured here with MSWA President George Pampacos and our Mascot Bosko.<br />

<strong>Spring</strong> 20<strong>15</strong><br />

Technology to enhance vision<br />

What is a relapse?<br />

Non driver’s guide<br />

MSWA Annual Dinner Auction

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

Letter from the Editor<br />

Dr Greg Brotherson<br />

The Multiple Sclerosis<br />

Society of WA (Inc.)<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 />


Sue Shapland 9365 4840<br />


Manager Community Care Programs,<br />

Gail Palmer: 9365 4851<br />


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

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

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

Bunbury Outreach (Wed) 9791 2472<br />

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


9 Ramsay Street 9791 2472<br />


1/21 Cammilleri Street 9754 2320<br />


Manager, Chris Rush: 9385 9574<br />


Manager, Liz Stewart: 9356 2747<br />


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



Manager, Linda Kidd: 9725 9209<br />

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 />

MSWA, 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 />

Letter from the Board 6<br />

Supporting the newly diagnosed<br />

and our low support needs Members 7<br />

Round-up of research and<br />

other items of interest 8-9<br />

Optic Neuritis 10<br />

Technology to enhance vision 11<br />

What is a relapse? 12-13<br />

MS Nurses Australasia (MSNA)<br />

Outstanding MS Nurse for the<br />

Year Award 13<br />

WA Trial Sites Update - August 20<strong>15</strong> 14<br />

Uncertainty and peace -<br />

can they hold hands? <strong>15</strong><br />

Getting around Perth:<br />

a guide for the non-driver 16-17<br />

That’s life with Narelle 18<br />

MSWA to build outreach and<br />

services centre in Bunbury 18<br />

What we leave behind 19<br />

Volunteer Update 20-21<br />

The law of detachment 21<br />

MSWA Annual Dinner Auction 22<br />

MSWA Commitment Awards 22<br />

Chevron City to Surf for Activ 23<br />

EveryWoman Expo 23<br />

MS Mega Home Lottery 23<br />

Pictures of MS 24<br />

Treendale Gardens respite<br />

and holiday unit 25<br />

Scrooge’s Christmas 25<br />

Wilson Outreach News 26<br />

Southside Outreach News 26<br />

Beechboro Lodge:<br />

News from north of the river 26<br />

Bunbury Outreach News 27<br />

Albany Outreach News 27<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 />


MSWA 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 />

Time to end progressive<br />

multiple sclerosis (MS).<br />

While considerable improvements in the treatment of the<br />

early inflammatory phase of MS have been achieved, the<br />

efficacy of these approaches in progressive disease has been<br />

disappointing, even with the most effective therapies. 1<br />

The Altas of MS, a worldwide study of the disease, tells us that<br />

the number of people with Multiple Sclerosis has increased<br />

from 2.1 million in 2008 to 2.3 million in 2013. The global<br />

median prevalence rate, which we discussed in the previous<br />

issue of your <strong>Bulletin</strong>, has increased from 30 in 2008, to 33<br />

people per 100,000 in 2013. Epidemiologists add that “...the<br />

cause of this increase is unclear”.<br />

What is clear, however, is that more than 2.3 million people<br />

worldwide currently living with Multiple Sclerosis. According<br />

to figures supplied by the International Progressive MS<br />

Alliance of Societies, more than half of these people, over 1<br />

million people, are living with a progressive form of MS.<br />

This progressive form of MS, the cause of which is neuron<br />

degradation, diminishes peoples’ faculties over time. The<br />

condition can affect vision, mobility, cognition and the ability<br />

to work will suffer. With this loss, people will inevitably lose<br />

their independence. Despite advances in treatments for<br />

other forms of relapsing-remitting MS, there are no effective<br />

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

with the progressive types of MS.<br />

For those people who are diagnosed with progressive MS, or<br />

later develop secondary progressive MS, there is no single<br />

identifiable disease pattern. As a result, researchers also lack<br />

the knowledge needed to focus their research, accelerate<br />

the progress of their work, test outcomes and then devise<br />

effective treatment.<br />

The Progressive MS Alliance is a growing global initiative<br />

to end progressive MS. This alliance began by bringing<br />

together the world’s leading experts in MS to identify the<br />

critical knowledge and treatment gaps where progress must<br />

be made to achieve breakthroughs necessary to change the<br />

world for people with progressive MS.<br />

Professor Alan Thompson, Dean of University College London<br />

(UCL) Faculty of Brain Sciences says that “...understanding<br />

progressive MS is about as complicated as it can get, because<br />

progressive MS is all about neuro degradation. It’s the Holy<br />

Grail, in a sense, and it is what we need to now focus on — in<br />

a collaborative sense. Collaboration is absolutely necessary<br />

when you have a complex problem, and understanding<br />

progression in MS is about as complex as it can get”. 2<br />

Coordinated by the Multiple Sclerosis International Federation<br />

(MSIF), this alliance of MS Societies is said by spokespeople<br />

for the alliance to be “...the most ambitious collaborative<br />

project the global MS movement has ever embarked upon”.<br />

MS Research Australia (MSRA) has joined MS organisations<br />

from around the world in this global alliance to put an end to<br />

progressive MS. And your MS Society here in WA is proud<br />

to announce that MSRA is the major beneficiary of the $1.5<br />

million raised this year for research into finding the cause and<br />

a cure for this nasty piece of work.<br />

In any scenario, progressive MS is the next frontier for<br />

MS research. Therefore, the principle task before us is to<br />

understand progressive MS, and then to devise effective<br />

treatment. This universal strategy for attacking disease is no<br />

less valuable for being a cliché. It is worth hoping that present<br />

therapeutic armamentarium will make a decisive difference in<br />

the occurrence or severity of progressive MS. 3<br />

Many of us older people have seen such announcements over<br />

past years, but even the most cynical of us can recognise a<br />

watershed moment when we see it. This is a new and exciting<br />

development not only for people with the progressive types<br />

of MS, but also for modifying the severity and occurrence of<br />

progression in all types of MS over the long term.<br />

Ransohoff, Hafler and Lucchinetti conclude that: “…it is<br />

incumbent on the clinical and research communities to press<br />

forward to model and decipher MS progression, which will help<br />

both to develop therapeutics and general knowledge about<br />

mechanisms of neurodegeneration”. 4 You will be hearing a<br />

lot more about these exciting developments within and about<br />

the Progress MS Alliance from us here at the <strong>Bulletin</strong> as<br />

they come to hand – and as that old saying goes – “watch<br />

this space.”<br />

1<br />

A. J. Coles et al, cited in a review representing the consensus view reached by experts in MS treatment from across Australia<br />

and New Zealand, ‘A new era in the treatment of multiple sclerosis’, Clinical Focus, MJA (3), 4 August 20<strong>15</strong>, p. 141.<br />

2<br />

Alan Thompson and the International Progressive MS Alliance. (2014).<br />

Retrieved from: https://www.youtube.com/watch?v=u5jgXDLSfs0&feature=youtu.be<br />

3<br />

Richard M. Ransohoff, David A. Hafler and Claudia F. Lucchinetti. (20<strong>15</strong>). Multiple Sclerosis – a quiet revolution,<br />

REVIEWS, Vol. 11, p.140.<br />

4<br />

Ibid, p.140.<br />

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

From the desk of the CEO<br />

Marcus Stafford<br />

“We’re doing well and there’s nothing to worry about”, said<br />

the CEO of Kodak as he finished his presentation to his Board.<br />

“This new stuff is a bit disruptive, but we’ve been around<br />

since 1884 and we’ll be around for a long time yet.”<br />

He may have slept well that night, believing that he’d nailed<br />

it, but he didn’t get much sleep in the months that followed.<br />

He learned too late that it is competition that should force<br />

companies to get out of their complacency.<br />

There is no room in the market for naïve confidence that a<br />

healthy brand has an automatic right to prevail. Digital came.<br />

Film went. And in 2012 Kodak filed for Chapter 11 Bankruptcy.<br />

As for the MS Society, let’s do the “we’re doing well” bit first,<br />

because indeed we are. The last twelve months have seen a<br />

9 percent growth in Member Services, a 13 percent growth<br />

in services to people with other disabilities, the continued<br />

development of our strategic footprint, a strengthening of our<br />

net asset position and the nation’s leading contribution to MS<br />

research. We should all be proud of those results. Proud – yes.<br />

But complacent that change is unnecessary and reserved for<br />

other people – no.<br />

And so to “...this new stuff is a bit disruptive” bit. Please<br />

welcome to the stage the NDIS! The National Disability<br />

Insurance Scheme.<br />

It is a truly excellent scheme that will make a huge difference<br />

to the lives of people with disabilities, but we should not<br />

underestimate its game-changer status. Organisations<br />

without scale and courage will go the way of Kodak. Every<br />

week I meet CEOs of other disability organisations who have<br />

failed to recognise the scheme’s significance and its resultant<br />

effect on them. Their complacency places their organisations<br />

at great peril. I love our sunburnt country and I wouldn’t<br />

live anywhere else. I love our laid back approach to life,<br />

but ‘she’ll be right mate’ has its limitations and where the<br />

NDIS is concerned, we won’t ‘be right’ … unless we adapt<br />

and change.<br />

In the next three years we will be doing a number of things to<br />

prepare ourselves for this great, but disruptive scheme.<br />

We will be completing our property footprint with the<br />

development of high support accommodation in the<br />

metropolitan area, with focus on the northern suburbs. We<br />

will also be building high support accommodation in Albany.<br />

Our services hub in Bunbury will be completed and will<br />

become the largest centre to service people with MS and<br />

other neurological conditions in Bunbury and the South West.<br />

By 2018 our accommodation, respite and allied healthcare<br />

services will be provided across 18 locations around the state.<br />

To support that ambitious plan for people with MS, and to<br />

secure our Society’s future within the NDIS marketplace, we<br />

must now continue our extension of services to people with<br />

other neurological conditions.<br />

This has win:win written all over it.<br />

Allow me to be selfish on the part of people with MS first!<br />

Not everyone with MS will be eligible to join the scheme.<br />

People aged over 65 are automatically excluded and the<br />

government’s evaluation system will cut out those that are<br />

deemed to be ineligible as they do not meet the criteria of<br />

requiring ‘reasonable and necessary supports’. However, at<br />

the MS Society, we don’t see things in that black and white<br />

way. We intend to continue to provide services to people in<br />

both these categories, together with the broader base.<br />

Great notion, but with the government’s block funding largely<br />

gone, how will we pay for this principled strategy? The answer<br />

sits mainly within two areas. Our own fundraising efforts will<br />

continue unchecked. In addition, we will welcome the dollars<br />

that NDIS participants with other neurological conditions will<br />

bring to us.<br />

The other part of the winning strategy relates to doing the right<br />

thing. Many people, including folk with MS have approached<br />

me over the years, asking if their friends and family members<br />

with other conditions could access the Society’s services.<br />

I have had to decline as, at a material level, I could not see<br />

benefit for people with MS. Soon that position will change<br />

as we accept NDIS income from those with comparable<br />

conditions and needs, who have been accepted on the<br />

scheme.<br />

At the forthcoming Annual General Meeting the Board and I<br />

will be asking Members, who are attending, to vote in favour<br />

of this necessary change to our Constitution.<br />

To avoid rubbing salt into the wound, we won’t tell the<br />

CEO of Kodak about the lessons we have learnt from their<br />

experiences, but we are grateful nonetheless!<br />

A message from the General Manager<br />

– Member Services Sue Shapland<br />

“If opportunity doesn’t knock, build a door.”<br />

Milton Berle<br />

The source of this saying, an American comedian, surprised<br />

me slightly, but that is often the case. Nonetheless the<br />

wording is quite profound.<br />

In many ways I think that is what MSWA has done consistently<br />

over the last 10 years. When the opportunities for external<br />

funding limited our ambitions, we diversified our fundraising<br />

efforts and grew our own income significantly. This along<br />

with sensible management of our funds has built and opened<br />

our own ‘doors’, allowing us to build new accommodation<br />

and respite facilities at Treendale and Hamilton Hill and<br />

top-up services funding to support an increasing number<br />

of Members.<br />

And it isn’t over yet. The Council application for a new and exciting<br />

outreach and services centre for Bunbury was approved! Now<br />

we are finalising the plans and aiming for construction to start<br />

by early 2016. The great land hunt for the north metropolitan<br />

centre and accommodation is also underway.<br />

2014/<strong>15</strong> was another very successful year for MSWA overall<br />

and for Member Services. We grew service hours for Members<br />

by 9 percent overall, and increased staffing and supports<br />

across the board, including some regional areas. Also, very<br />

importantly we had a record response to our Members’<br />

annual survey with excellent levels of overall satisfaction.<br />

Of course this doesn’t mean we can sit back and relax. We<br />

recently undertook two projects to review our offerings for<br />

the newly diagnosed and low support Members. Thank you<br />

to those who responded with their views and ideas; we will<br />

be implementing a number of new strategies and will keep<br />

you posted. Comments received included Members recalling<br />

being unclear about what a relapse is and what to do should<br />

it occur. This edition includes articles about relapses, Optic<br />

Neuritis and information on assistive technology solutions for<br />

folks with vision problems. We hope you find them of interest.<br />

This has also been a year of great change, and some<br />

challenges, for our staff as we work with both the National<br />

Disability Insurance Scheme (NDIS) model in the Hills trial site<br />

and the DSC WA comparison trial, NDIS My Way. The My Way<br />

site kicked off in Busselton in 2014 and commenced in the<br />

Cockburn and Kwinana areas on 1 July 20<strong>15</strong>. This means<br />

we run varied systems across three programs in addition to<br />

health, and we have been adapting and learning as we go.<br />

For the latest update see Mark Douglas’ article in this <strong>Bulletin</strong><br />

on pg 14. Both sites are opening up funding opportunities for<br />

some of our Members, and many others, with a greater focus<br />

on individual needs and desired outcomes. We have thus far<br />

targeted more detailed NDIS information to those living in trial<br />

sites but we will be expanding opportunities for all Members<br />

to learn more over the next few months.<br />

Nationally the trial sites have been operating for two years<br />

now, gaining experience and making revisions, and we are<br />

awaiting Government decisions on how and when the full<br />

scheme will be rolled out. That in itself will be a mammoth<br />

task but the winners will be those in need of various supports<br />

to meet their needs and enrich their lives.<br />

Also this past year has seen another three MS therapies<br />

approved by the PBS; Plegridy, Lemtrada and now Copaxone<br />

40. When I joined MSWA in 2003 we had four relatively new<br />

injectable disease modifying therapies. There are now 11<br />

which means greater choice and capacity to switch if the<br />

treatment isn’t working. There are still more treatments in<br />

clinical trials and so much MS research ongoing in Australia<br />

and around the world that there is always something new to<br />

learn and maintain our unified dream of a cure someday.<br />

Please remember the Member Services team is here to<br />

provide you with quality information about all aspects<br />

on MS treatments and research, and for support<br />

and services. Please don’t hesitate to call reception on<br />

(08) 9365 4888 and Janet will find the relevant staff to<br />

assist you.<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 <strong>Spring</strong> 20<strong>15</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Spring</strong> 20<strong>15</strong> 5

Letter from the Board<br />

Supporting the newly diagnosed and<br />

our low support needs Members<br />

Sue Shapland<br />

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

The NDIS is the biggest social reform the disability sector has seen in Australia’s history.<br />

It will give people living with disability the power to choose who provides them with the services and care they need.<br />

You will have received correspondence from our CEO, Marcus Stafford, informing you of our position and the need to<br />

change The Multiple Sclerosis Society of WA (MSWA) Constitution. This will allow MSWA to provide our full suite of<br />

care and support services to both people with MS and other neurological conditions, so that we may derive the full<br />

benefit of NDIS funding. These funds will allow us to continue to provide and grow our services and support for you<br />

and other people living with MS.<br />

This proposed change to the Society’s Constitution will be presented at the next Annual General Meeting of Members<br />

on Thursday, 22 October 20<strong>15</strong>.<br />

As your Board of Directors, we strongly support this proposed change. This growth is part of our long term plans for<br />

a safe, strong and sustainable future for your organisation.<br />

Yours sincerely,<br />

700<br />

600<br />

500<br />

400<br />

300<br />

200<br />

100<br />

0<br />

3<br />

Under 18<br />

years old<br />

31<br />

18-24<br />

years old<br />

165<br />

25-34<br />

years old<br />

395<br />

35-44<br />

years old<br />

612<br />

45-54<br />

years old<br />

551<br />

55-64<br />

years old<br />

374<br />

65-74<br />

years old<br />

111<br />

75 years<br />

or older<br />

George Pampacos<br />

President<br />

Greg Brindle<br />

Director<br />

David Jones<br />

Director<br />

Bill Hassell AM JP<br />

Senior Vice President<br />

Dr Greg Brotherson<br />

Director<br />

Horst Bemmerl<br />

Director<br />

Ros Harman<br />

Vice President<br />

Michael Linto<br />

Director<br />

Dr Joanne Samer<br />

Director<br />

Peter Wright<br />

Treasurer<br />

Professor Bill Carroll<br />

Director<br />

Jason Jordan<br />

Director<br />

As mentioned previously our 2014 Annual Members Survey<br />

was overwhelmingly supportive of our efforts. However, we<br />

must continually strive to evolve, evaluate and improve our<br />

service provision, based on feedback from our Members.<br />

The face of MS continues to change. We now have 11 MS<br />

treatments thanks to the increasing number that have been<br />

approved since the late 1990s. And, earlier diagnosis and<br />

positive lifestyle changes means being diagnosed with<br />

relapsing-remitting MS is, for many, less daunting.<br />

This means we have a very diverse Membership. Ages range<br />

from a small number of teens through to some in their nineties.<br />

We have approximately 75 percent of Members living in the<br />

metro area and the female to male ratio is approximately 3:1.<br />

Whilst we have significant numbers of Members accessing<br />

our various in and out of home supports and services, we<br />

are also cognisant that we have many who don’t, for<br />

whatever reason.<br />

This year we have undertaken a project seeking information<br />

regarding any unmet needs for our newly diagnosed and low<br />

support Members. This was followed by a supplementary<br />

project to gather a broader perspective. If you were contacted<br />

and have participated in either of these projects - thank you!<br />

These have helped identify some new opportunities for us to<br />

test out and we will be implementing them over the coming<br />

weeks and months. Here are just a few:<br />

• Follow-up phone calls for 12-18 months for our newly<br />

diagnosed/new Members; this will allow us to touch base<br />

regularly, especially with those who aren’t seeing our<br />

MS Nurses.<br />

• Reviewing our web page content, adding more about<br />

research and making the navigation clearer for Members.<br />

• Establishing peer support group opportunities where<br />

Members can come together informally and exchange<br />

stories and experiences.<br />

• Plan more short education forums after hours; topics such<br />

as employment advice, financial planning and planning for<br />

a family.<br />

• Investigate more digital options for Members, including<br />

closed Facebook groups and so forth.<br />

We will keep you posted regarding our progress and<br />

offerings and would love to hear from you if you have any<br />

suggestions or comments. You can send your comments<br />

to sue.shapland@mswa.org.au<br />

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

Round-up of research<br />

and other items of interest<br />

Sue Shapland RN, BN<br />

Here we bring you some of the latest MS research articles we<br />

have sourced from web sites and journals from Australia and<br />

around the world.<br />

From MS Research Australia:<br />

Australasian neurologists<br />

review the ‘new era’ of<br />

MS treatment<br />

A recent collaboration between<br />

24 top MS neurologists from<br />

Australia and New Zealand<br />

highlights the range of MS<br />

treatments now available,<br />

including 11 available with<br />

government subsidies for<br />

people with relapsing-remitting MS.<br />

Their paper has brought together the latest information on<br />

treatments and best practice for MS care.<br />

The collaboration is led by Professor Simon Broadley from<br />

Griffith University in Queensland, Chairman of the Australian<br />

New Zealand Association of Neurologists MS Neurology<br />

Sub-Committee and MS Research Australia’s Research<br />

Management Council.<br />

Advances in MS therapies over the past 20 years have<br />

dramatically changed the outlook and prognosis for people<br />

living with MS around the world. This paper aims to help<br />

inform GPs and other clinicians, who need to be up to date<br />

about the current best practice standards for treating MS.<br />

Physicians need to be aware of both the benefits and the<br />

potential complications associated with MS therapies.<br />

From Barts MNS Blog<br />

Efficacy of a telephone-delivered self-management<br />

intervention for persons with multiple sclerosis: a<br />

randomised controlled trial with a one-year follow-up<br />

Ehde DM, Elzea JL, Verrall AM, Gibbons LE, Smith A,<br />

Amtmann D.<br />

This study sought to evaluate the efficacy of telephone<br />

delivered self-management interventions for fatigue,<br />

pain, and depression in adults with MS. One hundred and<br />

sixty-three adults aged 25-76 years, with fatigue, chronic<br />

pain, and/or moderate depressive symptoms participated. The<br />

authors compared an 8-week individual telephone delivered<br />

self-management intervention to an 8-week individual<br />

telephone delivered MS education intervention.<br />

Conclusions: Both interventions resulted in short and long term,<br />

clinically meaningful benefits. The study demonstrated that<br />

the telephone is an effective method for engaging participants<br />

and extending the reach of care for individuals with MS.<br />

From the<br />

UK MS Trust:<br />

Kessler Foundation<br />

study shows poor sleep<br />

contributes to MS<br />

related fatigue<br />

Dr Lauren Strober, PhD, an<br />

MS researcher at Kessler<br />

Foundation explored the<br />

association of secondary<br />

fatigue and sleep disturbances<br />

in MS. Dr Strober confirmed that sleep disturbances<br />

significantly contribute to MS related fatigue, a common and<br />

often disabling symptom for people with MS.<br />

Her study of 107 working individuals with MS showed 61<br />

percent reported poor sleep. “Fatigue is detrimental to daily<br />

functioning and well being,” noted Dr Strober. “It clearly<br />

interferes with a person’s ability to participate fully in the<br />

community and the workplace. If we can determine what<br />

contributes to fatigue in MS, we can improve quality of<br />

life and keep people engaged in work and social activities.<br />

Routine screening for sleep problems and treatment of sleep<br />

disturbances may reduce fatigue and its debilitating effects.”<br />

From MSIF:<br />

Updates on two of the 22 progressive MS research<br />

projects being funded around the world by the<br />

Progressive MS Alliance:<br />

Identifying biomarkers of progression<br />

People with MS are keen to know, “Will my disease progress<br />

in the near future?” and “Will my disease progress quickly or<br />

slowly?”. Knowing the likely course of their MS can help with<br />

important life decisions. Doctors also want to identify those<br />

people with rapidly advancing progressive disease who might<br />

benefit most from early aggressive treatment.<br />

Note: A bio marker is a biologic feature that can be used to<br />

measure the presence or progress of a disease or the effects<br />

of treatment. It could be a test, on blood or CSF (spinal fluid)<br />

for example, that may assist in identifying differences in how<br />

people will be affected by a condition or respond to treatments.<br />

Understanding progressive MS<br />

nerve cell damage<br />

This is a hallmark of progressive<br />

MS, and it may be due to<br />

damaged nerve cell mitochondria,<br />

tiny energy-producing factories<br />

found inside all cells. Dr Don<br />

Mahad, Senior Clinical Fellow<br />

at the University of Edinburgh,<br />

explains, “The mtDNA found in<br />

nerve cells from people with progressive MS often contains<br />

mutations.” His research team wants to determine how<br />

easily these mutations develop in mitochondria from people<br />

with progressive MS. They will also investigate a potential<br />

relationship between the loss of myelin and changes<br />

to mitochondria.<br />

Read more at:<br />

mswa.org.au/<br />

researchupdate<br />

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

Optic Neuritis<br />

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

Technology<br />

to enhance vision<br />

Robyn Loxley, MSWA Occupational Therapist<br />

What is optic neuritis (ON)?<br />

ON is an inflammation of the optic nerve, the bundle of nerve<br />

fibers that transmits visual information from your eye to<br />

your brain.<br />

Who gets ON?<br />

It most commonly affects young adults between 20-40<br />

years and women more than men in the ratio of 3:1.<br />

Approximately 70 percent of people with MS will have ON at<br />

some stage.<br />

Not everyone who gets ON goes on to develop further<br />

MS symptoms.<br />

What causes it?<br />

ON is highly associated with MS, an autoimmune neurological<br />

condition that causes inflammation and damage to the myelin<br />

sheath covering nerves in the brain and spinal cord. In some<br />

people, ON may be the first indication or presentation of MS.<br />

ON can also be associated with other autoimmune conditions<br />

such as systemic lupus, some bacterial and viral infections<br />

and some drugs including an anti TB therapy.<br />

What are the signs and symptoms?<br />

ON usually causes some visual loss in one eye. Pain, worse<br />

on eye movement, and temporary reduction in vision are<br />

the most common. The extent of the loss of vision varies.<br />

It usually worsens over days, and exercise and hot showers<br />

may exaggerate the symptoms.<br />

Colour vision is often affected and many people report seeing<br />

flashing or flickering lights.<br />

Is it treatable?<br />

Treatment with steroids may speed up recovery of vision.<br />

Complications can occur including permanent damage to<br />

the optic nerve which may or may not cause symptoms.<br />

Whilst most people regain normal or near normal vision<br />

within months, for some vision loss may persist after the ON<br />

has improved.<br />

You can have more than one attack of ON.<br />

When to see your doctor?<br />

Eye conditions can be serious; they may cause permanent<br />

loss of vision or be related to other serious medical problems.<br />

You should seek medical advice if:<br />

• You develop any new symptoms e.g. eye pain or a change<br />

in your vision.<br />

• Your symptoms worsen or don’t improve with treatment.<br />

• You develop other unusual symptoms, including numbness<br />

or weakness, which may indicate a neurological disorder.<br />

References:<br />

• mayoclinic.org<br />

• UK MS Trust website A-Z of MS<br />

There are a range of devices available to assist people with visual<br />

challenges. As with most technology the options range from low<br />

to high tech devices. A good assessment is the most important<br />

thing to help determine what the most appropriate solution is<br />

for the individual. Once this is decided, the necessary training in<br />

the use of the device, and follow-up to make sure it is working<br />

effectively, is also essential.<br />

Tips for Reading:<br />

Begin by using a strong bright light over your shoulder to increase<br />

clarity and contrast. This can help provide an optimum reading<br />

environment.<br />

Hand held optical magnifiers come in a range of sizes and<br />

can assist in magnifying text to make it easier to see. They are<br />

a portable, light weight and inexpensive option if magnification<br />

is all that is required. The range of magnification varies and you<br />

need to pick the right strength for you.<br />

Portable electronic magnifiers can provide up to 18 times<br />

magnification, without reducing the field of view. This can make<br />

reading easier and more comfortable.<br />

There are also small to large desktop magnifiers that can be<br />

used for larger text items such as newspapers, books and so<br />

forth. Some have a screen reading option that will read the text<br />

aloud to you. These have up to 57 times magnification and are a<br />

good option for those who like to read for longer periods of time.<br />

A few of these options are:<br />

Prodigi Desktop: a lightweight CCTV that allows you to read with<br />

a simple touch of your finger. You place what you want to read on<br />

the plate below and it magnifies onto the TV screen in front of you.<br />

It can also read it to you if you become tired of reading.<br />

Readit Air: This is a portable device that can turn any computer<br />

(with the software downloaded onto it) into a CCTV. The document<br />

is placed under the Readit and is magnified onto the computer<br />

screen. It also has the option of reading the document to you.<br />

MagniLink Zip: This is a foldable, portable CCTV Screen Reader.<br />

It can have a battery pack which makes it even more portable.<br />

Scanners and Readers: If for whatever reason reading has<br />

become too difficult and is no longer viable, there are other<br />

options. The scanners and readers will read aloud from whatever<br />

text you put under them.<br />

They are easy to use and do not require much training. Just place<br />

the book or document on the scanning area and press the scan<br />

button. The buttons are all large, brightly coloured and very easy to<br />

use. The machine then scans the text and reads it back to you. You<br />

can adjust the voice rate and volume as well as forward and rewind.<br />

Audio Books:<br />

iPads or tablets can be used as an audio book as well as<br />

being able to read on them. The text can be enlarged and the<br />

background lighting changed, to make for optimum reading.<br />

Our Members who have difficulty reading are able to join the<br />

VisAbility (formally the Association for the Blind). VisAbility has an<br />

application or app for both iPads and tablets, which allows books<br />

to be downloaded in audio format. They have over 70,000 titles.<br />

Daisy player: is an audio book player that can take either a CD or<br />

USB device. VisAbility will download books for you. When you have<br />

finished, send it back and they will send you more. An interest form<br />

is filled in upon joining so they know the types of books you enjoy.<br />

Computer Access:<br />

Your computer will come with some built-in accessibility options<br />

for making the screen easier to see. Just go to Control Panel,<br />

then Accessibility options to see what is available.<br />

iPads and tablets also have built-in accessibility options such as<br />

Magnification and Voice Over.<br />

There is also a range of specialised software designed for the<br />

visually impaired.<br />

MAGic: Magnifies the computer screen, talks text back to you, and can<br />

be easily customised to suit your needs with colour and magnification.<br />

Guide Hands-free: No keyboard or mouse required, as it is all<br />

controlled through voice activation. Voice In/Voice Out means the<br />

guide repeats everything back to you.<br />

ZoomText: is magnification software, with many customisation<br />

options to suit your needs. It can also speak text.<br />

JAWS for Windows: This is screen reader software for your computer.<br />

This allows everything on the screen to be read back to you.<br />

Apps available for smartphones and tablets: Woolworths<br />

have a free Scanning App that allows you to scan an object and<br />

it will read the text.<br />

CamReader: is an app that takes a photo of an object and will<br />

tell you what it is.<br />

KNFB Reader: is an app that takes a photo of text and will read<br />

it back to you. This costs $130.<br />

VisAbility is located in Kitchener Avenue, Victoria Park. They have<br />

a small retail shop where you are able to purchase some of the<br />

low tech devices.<br />

They also have a Tech Centre where MSWA Members, who meet<br />

the eligibility criteria for their membership, can be assessed for<br />

the more high tech devices. If eligible it is possible to get funding<br />

for items, either through a Lotterywest grant or an Equipment for<br />

Living Grant.<br />

For further information please contact our Occupational<br />

Therapy Department on 9365 488.<br />

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

What is a relapse?<br />

Louise Hatter RN, MSCN, Cert. MS Nursing. MS Nurse Specialist<br />

What is a relapse, how can you identify it and what situations<br />

may contribute to a relapse?<br />

A MS relapse, also known as an attack, a flare up or an<br />

exacerbation, is caused by inflammation in the central<br />

nervous system (CNS). The inflammation damages the myelin<br />

covering the nerve fibres which slows or disrupts the flow<br />

of nerve impulses to and/or from the area. This results in a<br />

sudden onset of symptoms, which can be sensations or loss<br />

of power, for example. The symptoms experienced depend<br />

on the area of the brain or spinal cord affected. Some<br />

relapses are relatively mild, while others may cause more<br />

serious problems.<br />

A relapse is defined as the appearance of new symptoms, or<br />

the return of old symptoms, lasting for 24 hours or more, and<br />

not due to infection or other causes. Symptoms experienced<br />

before, or you have grown used to dealing with, might appear<br />

in a different part of the body or have increased in severity.<br />

To be considered a new relapse, these new symptoms must<br />

occur at least 30 days after the start of a previous episode.<br />

In relapses, symptoms usually appear over a short period of<br />

time, such as hours or days. They often stay for a number of<br />

weeks, although this can vary from very short periods of only<br />

a few days to many months.<br />

Symptoms which come and go can sometimes be considered<br />

a relapse, they don’t always have to be continuous. For<br />

example, some people experience a shock-like sensation<br />

when they bend their neck forward. This can be considered<br />

a relapse if it occurs every time they bend their neck for at<br />

least 24 hours.<br />

Relapses can vary from mild to severe. At their worst, acute<br />

relapses may need hospital treatment, but many relapses are<br />

managed at home, with the support of the GP, MS specialist<br />

nurse, and other care professionals. Not all relapses require<br />

treatment. Mild sensory changes (numbness or pins-andneedle<br />

sensations) or bursts of fatigue that don’t significantly<br />

impact a person’s activities can generally be left to get better<br />

on their own. For severe relapses (involving loss of vision or<br />

poor balance, for example) which interfere with a person’s<br />

mobility, safety or overall ability to function, a short course of<br />

high-dose corticosteroids (e.g. Methylprednisolone) may be<br />

used to reduce the inflammation and shorten the length of<br />

the relapse.<br />

Studies in treating relapses with steroids have shown they<br />

are effective in speeding up recovery but make no difference<br />

to the degree of recovery or the long-term progression of<br />

the person’s MS. Whether steroids are used or not, people<br />

often make a very good recovery from a relapse, with<br />

near complete remission. Around half of all relapses may<br />

leave some lingering problems, however slight. This occurs<br />

where damage to myelin is severe, resulting in some<br />

symptoms remaining, though these may still improve over the<br />

following months.<br />

Symptoms similar to those of a relapse can occur when there<br />

is an infection, more commonly a urine or respiratory infection.<br />

This is due to nerve impulses being slowed or disrupted when<br />

the body’s core temperature is raised. Symptoms will then<br />

improve by treating the underlying infection. It is important<br />

to rule out infection before thinking that new symptoms are<br />

due to a relapse. Speaking with an MS Nurse, and/or your<br />

neurologist, may help you better understand how to rule out<br />

relapse and resolve underlying symptoms.<br />

Many people feel they can identify things that trigger a<br />

relapse for them. However, what appears to affect one person<br />

doesn’t always apply to others, and research has not yet<br />

found what triggers a relapse. This makes it hard to suggest<br />

definite strategies for reducing the risk of relapses. What we<br />

do know is that since Disease Modifying Therapies were first<br />

introduced in the mid-90s research has shown that these<br />

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

Situations thought to contribute to a relapse:<br />

Stress<br />

Many studies have looked at possible links between<br />

psychological stress and MS getting worse. The evidence<br />

is not absolutely clear, but many experts believe that stress<br />

might be one of many factors which could increase the risk<br />

of a relapse. Anecdotally, many people affected by MS cite<br />

stress as a major factor in bringing on a relapse.<br />

Infections<br />

Some infections, for example a bladder infection, may also<br />

make an attack more likely. For this reason, people with MS<br />

are encouraged to treat bacterial infections early.<br />

Vaccinations<br />

There is no proven link between vaccinations (e.g. for flu,<br />

hepatitis B or any travel vaccines) and a relapse. If you’re going<br />

to an area where a serious infectious disease is prevalent, it’s<br />

generally far better to have a vaccination than to risk serious<br />

illness, which could have far worse consequences.<br />

Pregnancy<br />

There is an increased risk of a relapse in the months<br />

immediately after giving birth, however, many women with<br />

MS have fewer relapses during pregnancy.<br />

It’s often difficult for people with MS, especially in the first<br />

few years after diagnosis, to know what is and isn’t a relapse.<br />

It’s not uncommon to experience some ”on-off” symptoms<br />

even during remission – for example, fatigue or balance<br />

problems. New symptoms can be shocking or distressing at<br />

any time, but not every symptom is a sign that a relapse is<br />

beginning. Over time, you will understand your body and your<br />

symptoms better.<br />

Don’t put everything down to your MS. This can stop you<br />

exploring what else could be causing a new symptom. It’s<br />

possible that it’s nothing to do with your MS and needs to be<br />

checked out.<br />

If in doubt please contact our MS Nurses here at the<br />

Society to discuss your concerns on (08) 9365 4888.<br />

Information sourced from:<br />

mssociety.org.uk<br />

nationalmssociety.org<br />

mstrust.org.uk<br />

MS Nurses Australasia (MSNA)<br />

Outstanding MS Nurse for the Year Award<br />

Louise Hatter<br />

Congratulations to Dee Menzies, one of our MS Hospital<br />

Liaison Nurses, who was voted Outstanding MS Nurse for<br />

the Year Award at the recent annual MSNA Conference in<br />

Wellington, New Zealand.<br />

Dee is a highly valued member of our nursing team and<br />

shines in her role as MS Hospital Liaison Nurse. She<br />

has played a pivotal role in enhancing service access,<br />

particularly to rehabilitation services by collaborating with<br />

the hospital staff to improve referral pathways.<br />

Dee has proven an asset to both people with MS and<br />

hospital based staff. In fact she was nominated by one of<br />

the neurologists.<br />

Denise is a shining example of the value of MS Nurses and<br />

the direct and positive impact they can have on outcomes.<br />

She is also humble and a quiet achiever who is just keen<br />

to get things done.<br />

We congratulate Dee on her well deserved award!<br />

Dee Menzies with her award.<br />

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

WA Trial Sites Update<br />

- August 20<strong>15</strong><br />

Mark Douglas, Project officer, National Disability Insurance Scheme (NDIS) Trial<br />

Uncertainty and peace -<br />

can they hold hands?<br />

Lisa Papas, Counsellor<br />

The NDIS is the largest reform of the Disability sector<br />

in Australia’s history, and the long awaited decision as<br />

to what NDIS model Western Australia will adopt is expected<br />

in December.<br />

Whatever the decision, people deemed eligible to access the<br />

NDIS will experience greater opportunity to access funding<br />

and greater choice and control in the way they receive their<br />

supports and from whom.<br />

Two different models of the NDIS are currently being trialled<br />

in Western Australia and both commenced on 1 July 2014.<br />

The Commonwealth trial, NDIS, is available to eligible people<br />

living in the local government areas of Swan, Kalamunda<br />

and Mundaring and the State-based trial, NDIS-My Way, is<br />

available to eligible people in selected areas of the Lower<br />

South West region of Busselton and surrounds. The Statebased<br />

trial NDIS-My Way was expanded to include eligible<br />

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

Kwinana on 1July 20<strong>15</strong>.<br />

The trials have provided the opportunity for learning from<br />

both models, and time to consider any changes that may be<br />

required to improve the NDIS model prior to the planned full<br />

scheme roll-out that is expected to commence July 2016.<br />

Last month I took time to talk to certain Members living in trial<br />

site areas and asked them about their experiences. For those<br />

that had participated, feedback was largely positive and yet<br />

as at August 20<strong>15</strong>, only a small number of the people known<br />

to MSWA that may be eligible have accessed the NDIS. I am<br />

keen to understand why.<br />

NDIS contact details:<br />

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

of 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 />

One of the explanations frequently offered as to why they had<br />

not tried to access the trials, was that the person felt they<br />

would not qualify for assistance as they were still employed<br />

and able to perform most daily living tasks independently<br />

or with only a small amount of assistance. This does not<br />

automatically exclude people from gaining access to the<br />

NDIS and it may be that a small amount of assistance now<br />

will reduce their needs in the long-term. Early intervention<br />

is a component of the NDIS as it is believed that the earlier a<br />

person receives supports, the more likely their future needs<br />

will be reduced.<br />

In the coming months, I will be contacting all Members living<br />

in the trial site areas to ask whether they have accessed<br />

the NDIS and if they have not, the reason why not. It may<br />

be that people with MS may have different needs and it is<br />

important that the final NDIS scheme recognises this and is<br />

able to respond accordingly. The information gathered from<br />

Members will then be provided anonymously to the respective<br />

trial site Managers so that changes can be considered.<br />

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

know from experience that involving MSWA staff results in<br />

better plans for participants.<br />

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

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

on 9365 4824.<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 />

“Sticking with uncertainty is how we learn to relax in the midst of chaos,<br />

how we learn to be cool when the ground beneath us suddenly disappears.”<br />

Pema Chodrom<br />

Throughout our lives, all of us, at some time or another, deal<br />

with uncertainty. Some of us can cope with uncertainty better<br />

than others. So why is not knowing so scary?<br />

Uncertainty can stop us living a full life. Uncertainty means<br />

we can sit in the mud of “what if”, too scared to move forward<br />

in case something bad happens.<br />

We may miss out on travelling to an exciting new place<br />

because we are too scared of the unknown. We may forego<br />

opportunities with a new job or relationships because - what<br />

if it doesn’t work out?<br />

Often the worry of uncertainty creates imagined pain and<br />

loss. We pre-empt the possibilities of change being positive<br />

and sabotage ourselves with worry.<br />

For those of us who don’t tolerate uncertainty, it shows itself<br />

in behaviours such as worry, rumination, procrastination,<br />

avoidance and intolerance. All of these behaviours take an<br />

enormous bank of energy to maintain. Fear is the basis of<br />

uncertainty and underpinning that is inevitable change. So<br />

how do we change this behaviour? What can we put in place<br />

to help us find peace during uncertainty?<br />

Some steps to helping us tolerate and even embrace<br />

uncertainty and change:<br />

Try something new: trying something small and safe can<br />

help us gain confidence and tolerance for bigger changes. Tiny<br />

steps help us gain mastery over things that are challenging or<br />

different. The more confident we become the less impact the<br />

new or different will have on us in a negative way.<br />

Making mistakes: If you make a mistake don’t see it as<br />

a painful failure. If something doesn’t go as planned see it<br />

as an opportunity for growth and learning, to get stronger<br />

and wiser.<br />

Think of change as a positive not a negative: There<br />

is opportunity in change. Change might mean leaving a<br />

place of comfort or losing something you love, but it also<br />

can bring richness and opportunity that allows exploration<br />

and fearlessness.<br />

Establish your focus of control: If you can’t control<br />

circumstances, it can quickly feel like you have no control<br />

in your life. This initiates feelings and thoughts of fear. You<br />

actually have more control than you think. You have control<br />

over your thoughts. You can carry out a reality check! Is it<br />

really as bad as you project? Can you change your thinking<br />

and create fewer struggles in your mind? Fewer struggles<br />

mean less stress. Controlling your thoughts allows you power<br />

to change the fear. This gives you a sense of confidence that<br />

your life is not a runaway train. You can control the speed!<br />

Understand uncertainty: Our life journeys will always be<br />

made up of a series of hurt, risks, laughter, and celebration.<br />

Unfortunately we don’t get to pick in what measure these<br />

things are presented to us. Sometimes it can feel like it is<br />

all of one and none of the other. Learning to acknowledge<br />

that there will always be uncertainty sometimes allows a<br />

freedom that opens us up to joy, excitement, adventure and<br />

peace. We learn that good things happen even as bad things<br />

are happening.<br />

Many people talk about having MS creating fear, uncertainty,<br />

and anxiety. This is a normal reaction to being diagnosed with<br />

a lifelong chronic condition. However, as time goes on, some<br />

people have reflected that even though they don’t wish to<br />

have it, the experience has created new ways of being that<br />

they would never have envisaged.<br />

It often means positive elements of self-care and compassion<br />

that they would not have experienced if this life challenge had<br />

not presented itself. Uncertainty creates opportunity!<br />

I’ll leave you with a lovely quote from Gilda Radner and<br />

a link to Ajahn Brahm’s talk on uncertainty from the<br />

Buddhist perspective:<br />

“I wanted a perfect ending. Now I’ve learned, the hard way, that<br />

some poems don’t rhyme, and some stories don’t have a clear<br />

beginning, middle, and end. Life is about not knowing, having to<br />

change, taking the moment and making the best of it, without<br />

knowing what’s going to happen next. Delicious ambiguity.”<br />

– Gilda Radner<br />

Ajahn Brahm and uncertainty:<br />

youtube.com/watch?v=FnOPmLLm7F4<br />

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

Getting around Perth:<br />

a guide for the non driver<br />

Sandra Wallace, MSWA Occupational Therapist<br />

1. Train travel<br />

All train carriages have clearly marked spaces for wheelchairs or scooters near the doors. However, only some stations are fully<br />

accessible from the platform to the train entrance.<br />

The following lines are fully accessible:<br />

Train Line<br />

Armadale/ Thornlie<br />

Fremantle<br />

Joondalup<br />

Mandurah<br />

Midland<br />

Perth City<br />

Stations not listed above have partial or limited access on the<br />

platform and from the platform onto the train.<br />

It is possible to request special assistance at the station<br />

by calling at least one hour in advance of your arrival on<br />

1800 800 022. The Transperth InfoLine can be contacted for<br />

information on large print timetables, ticketing, lost property<br />

and other general enquiries.<br />

2. Bus travel<br />

Not all buses are accessible. However, the wheelchair symbol<br />

on the Perth bus timetable indicates a fully accessible bus on<br />

the route. These buses have a low floor and are ramped. The<br />

Central Area Transit (CAT) services in Perth, Fremantle and<br />

Joondalup also provide full access.<br />

A full list of accessible bus routes can be found<br />

by calling the Info Line on 13 62 13 or visiting<br />

transperth.wa.gov.au/Using-Transperth/Disability-<br />

Assistance/Bus-Accessibility<br />

Accessible train stations<br />

Armadale, Beckenham, Carlisle, Gosnells, Kelmscott,<br />

Thornlie and Victoria Park<br />

City West, Grant Street, Lock Street, Mosman Park,<br />

Shenton Park, Subiaco, Swanbourne and West Leederville<br />

Clarkson, Currambine, Glendalough, Greenwood, Joondalup,<br />

Warwick and Whitfords<br />

Bull Creek, Canning Bridge, Cockburn Central, Kwinana,<br />

Mandurah, Murdoch, Rockingham, Warnbro and Wellard<br />

Bassendean, Maylands<br />

Claisebrook, Esplanade and Perth Underground<br />

Phone: 13 62 13 or visit transperth.wa.gov.au and search<br />

for “accessibility”.<br />

For translation and interpreter services you can call:<br />

13 14 50.<br />

It is important to be mindful of your own personal safety<br />

while using public transport. If you need to report an<br />

incident and wish to have a transit officer attend a<br />

situation, you can call 9220 9999.<br />

3. Ferry travel<br />

Both the Mends Street Jetty in South Perth and the Barrack<br />

Street Jetty in Perth are fully accessible. The ”Shelley Taylor-<br />

Smith” ferry is able to accommodate users of wheelchairs<br />

and scooters onboard.<br />

4. Taxi travel<br />

If you are a permanent resident of Western Australia and have<br />

a permanent disability that results in difficulties with mobility,<br />

vision or cognition, you may be eligible for the Taxi User’s<br />

Subsidy Scheme (TUSS).<br />

This scheme entitles most members to a 50 percent subsidy,<br />

up to $25 for each single trip. Those who use a wheelchair or<br />

scooter could possibly be entitled to a 75 percent subsidy, up<br />

to a maximum of $35 for each single trip.<br />

To discuss eligibility further or to request an application<br />

form you can telephone 1300 660 147. The application,<br />

along with some passport photographs, needs to be<br />

returned via post.<br />

5. ACROD parking<br />

If difficulty is experienced when walking from a family<br />

member or friend’s car in the carpark, on your own, or you<br />

need a wide bay to fully open the door to get in or exit the<br />

vehicle, you may be eligible for the ACROD parking program.<br />

6. Using a mobility scooter or power<br />

wheelchair in the community<br />

If you are using a power wheelchair or scooter for the first<br />

time it is a good idea to get some training.<br />

If the mobility aid is not capable of doing more than 10km/hr it<br />

is permitted on footpaths, pedestrian areas, shopping centres,<br />

in public places and to cross roads.<br />

It is important to consider the ongoing maintenance of these<br />

mobility aids, such as upkeep of tyres, battery servicing and<br />

ongoing suitability for your purpose. An occupational therapist<br />

can assess what is most appropriate for you. RAC Wheels 2<br />

Go membership will include emergency attendance for such<br />

matters as a flat tyre.<br />

More information on using a mobility aid to<br />

access the community is available from an MSWA<br />

occupational therapist or at the following website:<br />

mainroads.wa.gov.au/UsingRoads/PedestriansCyclists/<br />

Pages/MotorisedWheelchairGuides.aspx<br />

To speak with an MSWA Occupational Therapist please<br />

call 9365 4888.<br />

The following website has more information on<br />

accessibility surrounding the ferries or again the<br />

TransPerth Info Line 13 62 13.<br />

accesswa.com.au/Pages/Feature.aspx?FeatureID=2013<br />

If you meet the eligibility criteria, receive the signage for your<br />

car and you can then use the many ACROD parking spaces<br />

marked with the wheelchair sign. Your application needs to be<br />

endorsed by your doctor or an occupational therapist.<br />

The application form and further information on eligibility<br />

can be acquired by calling 9242 5544, or visit app.org.au/<br />

16 <strong>Spring</strong> 20<strong>15</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Spring</strong> 20<strong>15</strong> 17

That’s life<br />

with Narelle<br />

Narelle Taylor<br />

What we leave behind<br />

Ros Harman<br />

As if it’s not bad enough being diagnosed with MS and having<br />

to adjust my outlook on life and living, I have also had to<br />

accept the condition and its impact on me.<br />

Having sorted all of that out, I now realise I may also be aging.<br />

I’m surrounded by age here at the nursing home where I live<br />

but since I’ve been kissed by a fairy I guess I won’t stress out<br />

too much about my own senility. I have observed however,<br />

that along with the other residents here I too, just as they are,<br />

will become comfortable with any failings that age will apply<br />

to me. The fairy’s kiss has worn well.<br />

I do try to sort some things out for particular residents and staff<br />

but I’ve learnt that I have to be sure that it’s really necessary.<br />

When my friend (let’s call her D2) is seemingly lucid, she will<br />

admire fabric that my other friend D3 is wearing. D2 will talk<br />

about the pattern of the garment and the prettiness of the<br />

buttons but then thinks she has seen something crawling<br />

on the garment. D2 will try to brush away the creature from<br />

D3’s shoulder, whereupon D3 loses patience and insists there<br />

wasn’t, then or ever, anything crawling on her garment. It is<br />

usually a loud, attention attracting scene.<br />

To defuse the situation I purchased a toy hairy black spider and<br />

gave it secretly to D3. I thought D2 would shelve the heroics and<br />

the brushing down forever when she encountered the “spider”<br />

on D3’s shoulder, but the spider was taken away before it was<br />

ever worn. I thought whoever took it may have considered the<br />

heart attack it was likely to have caused. Mind you D3 now laughs<br />

when the button admiration begins and I’m in the background<br />

with my hand crawling spider-like across my shoulder.<br />

MSWA to build Outreach and<br />

services centre in Bunbury<br />

The Multiple Sclerosis Society of WA (MSWA) has<br />

announced plans to build an Outreach and services centre<br />

for people living with MS and their families in Bunbury.<br />

Bunbury City Council approved plans on 23 June with MSWA<br />

planning to commence the build by early 2016.<br />

The Bunbury region has been expanding over the years<br />

making it the ideal location for a regional service hub.<br />

There are now approximately 250 MSWA Members situated<br />

between Mandurah and Margaret River with greater<br />

numbers in and around Bunbury.<br />

The centre will have disability access and provide a base<br />

for our health team. The larger premises will also allow<br />

On my own birthday this year, I celebrated the 44th<br />

anniversary of my 21st, but my best friend’s husband Terry,<br />

was this year’s star when he turned 70. We all sat at the<br />

restaurant table wearing masks when he arrived and were all<br />

delighted when his sister from interstate removed her mask<br />

and truly surprised the old bloke. Birthdays are such fun if<br />

you’re not worried about getting older - if you truly aren’t<br />

scared of running out of time.<br />

He accepted his 70th birthday congratulations with dignity all<br />

evening but I think the best achievement of the evening was<br />

mine. I was carried, without squealing, wheelchair and all,<br />

up two flights of stairs because there was no elevator. Thank<br />

goodness today’s kitchen staff eat Iron Man food.<br />

My youngest daughter Bree recently despaired at our<br />

conversations being so frequently interrupted by requests for<br />

drinks, trips to the toilet, emergency nappy changes and so<br />

forth. Her solution was to have a few days away without her<br />

children with only the company of yours truly. We could then<br />

talk uninterrupted. I don’t know that I have anything all that<br />

special to say but I’ve accepted the invitation to the resort<br />

in Bali and will sharpen my conversation skills before mid-<br />

September so that she won’t be disappointed.<br />

I’m sure she’ll have a great time even if I don’t say a word.<br />

Just the relief of having time off from mothering will be<br />

wonderful for her. I’ve never been to Bali and I’m interested to<br />

know if the place is wheelchair-friendly. If not I’ll have to stay<br />

in the resort and endure massages, manicures, pedicures and<br />

such. That’s life in the slow lane, but it’s not too hard to take!<br />

for increased opportunities for services with a sizeable<br />

physiotherapy gym, a massage room and a spacious<br />

meeting area for Outreach seminars and workshops.<br />

The 630sq m centre will sit on a 2800sq m block on Mason<br />

Street, in Bunbury’s light industrial area.<br />

Our CEO, Marcus Stafford said, “This works for so<br />

many reasons – it is a block of land in a great site, it is<br />

well-positioned for us at an affordable price, and we can<br />

build a state-of-the-art facility with car parking.”<br />

Mr Stafford added that while there is still work to be done<br />

before construction begins, he is hopeful that the centre<br />

will be completed in 18 months.<br />

My mother is losing herself. We laughed about her memory<br />

lapses when they first started. Ha! Don’t we all forget names<br />

from time to time? But it got worse and it got worse fast. The<br />

diagnosis didn’t surprise us. My mother has dementia.<br />

For several years my sisters and I made maximum use of<br />

community services to enable Mum to keep living in her own<br />

home but in the end she wasn’t happy. Eventually the time<br />

came when she no longer recognised her lovely home and<br />

began to wander around lost and frightened. It was then that<br />

we decided it was time for her to move into a facility with<br />

special care for people living with dementia.<br />

We put Mum’s house in Albany on the market and were<br />

surprised when the next day someone made a generous offer<br />

on it. My sister, who lives nearby, had to spring into action to<br />

empty it of her belongings. With the help of her daughter she<br />

took photos of everything and put them on the internet in a<br />

closed site for the family to see.<br />

Over an intense three week period we watched the<br />

paraphernalia of Mum’s life parade across our computer<br />

screens. We saw everything from the crystal vase she was<br />

given on her 21st birthday to the old electric frying pan she<br />

had used for cooking sausages. In a remarkably civilised<br />

fashion, my sisters and our children tentatively put our bids in<br />

for various items that caught our fancy. Some of the choices<br />

were made for practical reasons. The young ones picked up<br />

a few items that will be very useful for them as they set up<br />

their households, but my sisters and I are at that time in life<br />

when we don’t really need any more stuff. I picked out a few<br />

items for sentimental reasons – some lovely china and a nice<br />

garden statue that Mum loved. Most of the furniture was sold<br />

cheaply to a friend. In the end, what was left was carted off to<br />

the Lion’s club for their annual charity garage sale.<br />

Sadly, my mother doesn’t know what has happened to her<br />

house or her things. We tried to explain it to her but if she<br />

did comprehend what was happening, she soon forgot. She<br />

doesn’t remember much anymore, especially if it has only just<br />

happened. Much of the time she thinks she is back at the<br />

girls’ hostel she lived in when she worked in Melbourne in<br />

the 1940s. She often talks about going to visit Auntie Queenie<br />

who would be about 125 years old if she was still alive today.<br />

Everything since then is mostly lost to her: her two happy<br />

marriages, her achievements as a mother and a farmer,<br />

singing in the Light Opera Company, running a boarding<br />

house and being an active member of the Albany community.<br />

All these are alive only in the memories of my sisters and I.<br />

I can’t help wondering if I will end up like my mother. My<br />

sisters and I all worry about it. Each time one of us finds<br />

ourselves momentarily forgetting something, no matter how<br />

trivial, we stop breathing for a second. I don’t know how well<br />

my brain will survive the next few decades. I do what I can to<br />

keep it healthy - if you count playing Sudoku and Words With<br />

Friends, exercise. I had an MRI scan taken the other day and<br />

saw what it looks like, which only served to confirm my long<br />

held dislike of having photos taken of myself.<br />

One day I will get old and might need to move into a facility,<br />

perhaps one built by the MS Society. I don’t know if anyone<br />

is going to want any of my belongings. My daughter will<br />

have to sort that out. I hope she will treasure my mother’s<br />

garden statue.<br />

18 <strong>Spring</strong> 20<strong>15</strong> The MS Society of Western Australia<br />

The MS Society of Western Australia <strong>Spring</strong> 20<strong>15</strong> 19

Volunteer Update<br />

Dawn Burke, Volunteer Coordinator<br />

A recent review was also conducted to find the true definition<br />

for volunteering in Australia. The results were collated from<br />

national stakeholder information sessions and online surveys<br />

to gauge community views. From all of this information,<br />

Volunteering Australia has announced the new definition for<br />

volunteering as: time willingly given for the common good<br />

without financial gain. Please go to the Volunteering WA<br />

website if you would like to find more information on this.<br />

With that in mind, I would like to welcome all our new<br />

volunteers to the MS Society, as we open our arms and<br />

embrace them into our family. It is very important for all Staff<br />

and Members to continue to make the new, and the not so<br />

new, volunteers feel welcome and to remember to thank them<br />

for the amazing job they do. Believe me, this goes a long way.<br />

Lastly, we had three longstanding volunteers who decided to<br />

hang up there boots, knives or phones, depending on their<br />

volunteer position and whichever way you would like to look<br />

at it. I would like to take this opportunity to thank them all<br />

collectively for the years and time they have given to us (34<br />

years combined) and wish them the very best for the next<br />

chapter in their lives. Please enjoy your future endeavours and<br />

don’t forget about us, as we won’t forget about you.<br />

Paul Watson has been volunteering with us for over 14<br />

years. He has volunteered tirelessly with the Wilson Tuesday<br />

Outreach Group and has made a huge difference to so many<br />

of our Members. Thank you Paul for all of your blood, sweat<br />

and tears over the years, it is much appreciated and will never<br />

be forgotten. We wish you well with your future endeavours<br />

and whatever road you may take from here.<br />

Jean Shepherd has been volunteering with us for over 10<br />

years in the Wilson kitchen keeping all the hungry mouths<br />

fed and watered. Jean has still been popping in from time to<br />

time lending a helping hand. Thank you Jean, your time and<br />

commitment is appreciated and we love seeing you coming<br />

back in every now and then. Enjoy your retirement years.<br />

Lastly, but certainly not least, Marilyn Lawson decided to<br />

literally hang up the phone in reception on Fridays! Marilyn has<br />

been the “go to” person for all visitors, Staff and volunteers<br />

every Friday for the past 10 years. Thank you Marilyn for your<br />

ongoing commitment to the Society and we wish you all the<br />

best for the future. I do believe Marilyn will be spending her time<br />

travelling around the world unlike the rest of us mere mortals.<br />

That’s all from me for this <strong>Bulletin</strong>. I look forward to catching<br />

up with you all in the corridors of Wilson or out and about at<br />

one of our many Outreach, residential and respite facilities.<br />

Once again, as always, I wish to thank you all for the great<br />

contributions you make to the MS Society and our Members.<br />

Every minute is appreciated and extremely valued by all, you<br />

are truly wonderful people. Take care and bye for now.<br />

Hello everyone, I trust this <strong>Bulletin</strong> finds you all fit and well,<br />

and hopefully most of you came through the winter unscathed<br />

from any of those winter nasties. Goodbye winter, hello spring<br />

with the birds and the bees and all the sunshine that follows!<br />

National Volunteers Week was celebrated nationally from 11<br />

to 17 May 20<strong>15</strong>. This year I decided to hold the volunteer<br />

luncheon the week after Volunteers Week to allow our<br />

volunteers to attend any other celebrations they may have<br />

been invited to, whether here in the Society or elsewhere in<br />

the community. Many volunteers offer their valuable services<br />

to multiple organisations, which enhances more and more<br />

lives across this wonderful country of ours.<br />

During Volunteers Week I was very fortunate to attend the<br />

Members camp at Guilderton, Moore River, from 11 to 14<br />

May. Members attending the camp were fortunate to have a<br />

couple of our lovely volunteers come along and join in all the<br />

fun and frivolity. The camp fell within Volunteers Week which<br />

created a perfect opportunity to recognise those Members<br />

attending who are current or past volunteers, either with us or<br />

other organisations. What a great way to celebrate with and<br />

acknowledge all of their time and efforts with a scrumptious<br />

high tea, compliments of our very own talented Teresa from<br />

Individual Options.<br />

Volunteer luncheons were held on 18 May for our metropolitan<br />

volunteers and 21 May for our Bunbury volunteers. Our metro<br />

volunteers enjoyed their luncheon at Burswood on Swan,<br />

which is a beautiful venue with the Swan River and gorgeous<br />

city as our view. The feedback was fantastic and the food<br />

couldn’t be faulted. It was lovely sitting inside enjoying a<br />

sumptuous meal while watching the much needed rain falling<br />

around us.<br />

Bunbury’s luncheon was very much a contrast to Perth,<br />

as the sun god was out delivering sunshine and clear blue<br />

skies for all to enjoy. A last minute hiccup resulted in a quick<br />

change of venue! Luckily for us the Waters Edge Café and<br />

Restaurant, which is nestled right on the Leschenault Inlet,<br />

was able to come to the rescue at short notice. We all enjoyed<br />

the fabulous fine fare they had to offer and a fantastic time<br />

was had by all.<br />

I attended a Volunteering WA network meeting in July and was<br />

provided with some interesting statistics around volunteering.<br />

Did you know the current projected dollar amount for services<br />

provided by volunteers within organisations is valued at<br />

$33.71 per hour? And the economic, social and cultural value<br />

of Volunteering in WA is conservatively valued at $39 billion!<br />

This equates to volunteering being the industry’s biggest<br />

sector in WA. What an amazing contribution this is to all the<br />

many organisations that recognise the value of volunteers<br />

in the workplace. You cannot measure the amount of skill,<br />

knowledge and experience that you bring to the MS Society<br />

and we are very blessed to have such an array and dedicated<br />

group of volunteers.<br />

The law of detachment Dr Andrew Ong<br />

When the unknown arrives in the form of a traumatic<br />

event, such as the diagnosis of MS, there is no option but<br />

to come to grips with an unknown future. Your willingness<br />

to do so however, can only be enhanced if you have an<br />

inkling of an understanding of the law of detachment. In<br />

detachment, you will acquire a measure of the wisdom<br />

of uncertainty that has been factored into every moment<br />

of your existence. This means that no matter what may<br />

befall you in the future there is still excitement, adventure<br />

and mystery. You can still experience the fun of life – the<br />

magic, the celebration, the exhilaration and the exultation<br />

of your own spirit.<br />

Having been diagnosed, the time has arrived when it<br />

pays to take a step back and review your goals, examine<br />

your life and what the future might hold. At such times<br />

of uncertainty, the law of detachment tells us that in<br />

uncertainty lies the freedom from our past, from the known<br />

which is the prison we have constructed for ourselves and<br />

a past that others have conditioned us to believe is true.<br />

However, if our future suddenly becomes uncertain, if you<br />

can then detach yourself from the past and boldly step into<br />

the unknown, you can look at all of the new possibilities<br />

before you.<br />

The ancient scholars of the Mundaka Upanishad tell us that<br />

the Law of Detachment says in order to acquire anything<br />

in the physical universe, first you have to relinquish your<br />

attachment to it. This doesn’t mean you have to give up<br />

the intention to create what you desire, and neither do you<br />

give up your desire to create it but you do have to give up<br />

your attachment to the result.<br />

For instance if you begin to believe in yourself then<br />

everything else becomes symbolic — cars, houses, money,<br />

clothes and jewellery — these symbols are transitory,<br />

they come and they go. Therefore chasing symbols is like<br />

settling for the map instead of the territory. Fixating on<br />

symbols can only create anxiety and end up making you<br />

feel hollow and empty inside because you are exchanging<br />

yourself for the symbols of yourself.<br />

Attachment therefore is always about symbols, whereas<br />

detachment is freedom to create. Even the search for<br />

security is an illusion and if you haven’t already found<br />

it, that’s the point. The search for security and certainty<br />

is actually an attachment to the known. And what’s the<br />

known? The known is our past. The known is nothing<br />

other than the prison of past conditioning. Whereas the<br />

unknown that has been foisted upon you is the field of all<br />

possibilities, ever fresh, ever new and always open to the<br />

creation of new manifestations. You can reinvent yourself.<br />

20 <strong>Spring</strong> 20<strong>15</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Spring</strong> 20<strong>15</strong> 21

Best of the West<br />

MSWA Annual<br />

Dinner Auction<br />

The Multiple Sclerosis Society of Western Australia<br />

(MSWA) hosted the annual MSWA Dinner Auction at the<br />

State Reception Centre, Fraser’s, Kings Park on Thursday,<br />

6 August 20<strong>15</strong>.<br />

Now in its 11th year, the dinner is held to recognise MSWA’s<br />

key sponsors and supporters. Over 260 guests enjoyed a<br />

fabulous evening while supporting Western Australians living<br />

with multiple sclerosis (MS).<br />

Guests bid for a range of locally donated products in the<br />

exciting silent and main auctions and the total raised for the<br />

night was an impressive $36,875.<br />

All the funds raised from the MSWA Dinner Auction will<br />

support Western Australians living with MS.<br />

MSWA Commitment Awards<br />

MSWA’s annual Dinner Auction saw members of the MS<br />

community rewarded for their continuous support with the<br />

20<strong>15</strong> MSWA Commitment Awards.<br />

Announced on the night by MSWA President George<br />

Pampacos, the awards recognise the significant and<br />

meaningful contributions made by both individuals<br />

and businesses in support of people living with MS in<br />

Western Australia.<br />

The Business Award was presented to Larry Cherubino<br />

Wines, who have been loyal supporters of MSWA for over<br />

eight years.<br />

Owners Larry and Edwina Cherubino accepted their award<br />

and were overwhelmed by the honour.<br />

“We are thrilled to be acknowledged. We love helping<br />

the MS Society of WA and no thanks are required. This is<br />

an amazing organisation that helps so many people,” Mr<br />

Cherubino said.<br />

Dave Savy, a long time volunteer for MSWA, was presented<br />

with the Commitment Award in the Individual Category.<br />

“Volunteering is something that I have enjoyed doing and<br />

have never expected anything in return. Winning this<br />

award shows just how much MSWA appreciates their<br />

volunteers,” said Mr Savy.<br />

(L-R) George Pampacos and<br />

Dave Savy.<br />

(L-R) George Pampacos,<br />

Edwina and Larry Cherubino.<br />

MSWA CEO Marcus Stafford commended the worthy<br />

winners.<br />

“Cherubino Wines and Dave Savy are both so valuable<br />

to our organisation and I’m extremely pleased they have<br />

been acknowledged for their efforts,” he said.<br />

“If you have attended our events, you would recognise<br />

Dave as a familiar face. He is always willing to help and<br />

ready with a smile.”<br />

Marcus added, “Larry Cherubino Wines have been<br />

supporters of MSWA for many years, providing their<br />

fabulous wines to a number of our events. Guests at<br />

the dinner had the pleasure of pairing the donated Larry<br />

Cherubino Wines with their exquisite meals.”<br />

Chevron City to Surf for Activ<br />

This year’s Chevron City to Surf for Activ saw a number of<br />

dedicated fundraisers running or walking for MSWA<br />

Held on 30 August, long time supporters Pharmacy 777<br />

took part once again this year, raising over $18,000.<br />

Congratulations also go to Lloyd Dorsogna, who has been<br />

living with MS since 2002 and ran in the 12km course with<br />

his Dad and father in law. Lloyd continues to live a fulfilling<br />

life despite his diagnosis. He said, “I have worked, travelled<br />

the world, completed medical specialist training, obtained a<br />

PhD, met and married my beautiful wife Martina, become a<br />

father to two fantastic boys... and there is plenty more to be<br />

achieved!” Over $23,000 has been raised for MSWA so far.<br />

We’d like to thank all who took part and everyone who<br />

donated to help Western Australians living with MS.<br />

EveryWoman expo<br />

The Mundella EveryWoman Expo was held at the Perth<br />

Convention and Exhibition Centre from 19 to 21 June and<br />

everyone attending had a fabulous time! Now in its 17th<br />

year, the event showcased fashion catwalks, empowering<br />

workshops, cooking classes, food sampling, beauty<br />

makeovers, and our very own MS stand. The highlight<br />

was the Bodhi’s Bakehouse Celebrity Kitchen, where Perth<br />

celebrities cooked and raised funds for MS! Our very own<br />

MSWA Ambassador Josh Kennedy, joined in and whipped up<br />

a delicious fried rice dish.<br />

Thank you to everyone who came down and supported<br />

MSWA.<br />

MS Mega Home Lottery<br />

The MS Mega Home Lottery launched in August 20<strong>15</strong> and<br />

it’s our biggest yet! Selling out in just 13 days, luxury cars,<br />

dream holidays and an Early Bird Prize of $500,000 are just<br />

a few of the many prizes on offer. The Grand Prize Winner<br />

will be in the enviable position of choosing between a fully<br />

furnished, Webb & Brown-Neaves show home in City Beach,<br />

valued at $1.6 million, or $1.35 million in cold, hard cash. For<br />

the first time ever, four $50,000 Cash Bonus Prizes were on<br />

offer, with the lucky winners announced on 16 September.<br />

With a one in 25 chance of winning, keep your eyes<br />

peeled on mslottery.com.au or head to our Facebook<br />

page to find out if you win big! All remaining prize draws,<br />

including the Early Bird and Grand Prize will be drawn on<br />

Wednesday, 14 October 20<strong>15</strong>.<br />

Lloyd (L) with his dad at the event.<br />

22 <strong>Spring</strong> 20<strong>15</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Spring</strong> 20<strong>15</strong> 23

Pictures of MS<br />

In July, MSWA launched a campaign to highlight<br />

Member stories and show how no two people with<br />

MS have the same journey.<br />

Developed by The Brand Agency, the ‘Pictures of MS’<br />

campaign takes the real life experiences of three<br />

Members at different stages of MS and brings their<br />

stories to life using the talents of three different<br />

international artists. The stories of Members living<br />

with low, medium and high impact MS show the<br />

diversity of the condition.<br />

The underlying theme of the campaign, ‘Every person<br />

with MS has their own story. With your help, we can<br />

tell a better one’, was designed to educate the public<br />

about MS and encourage people to visit the MSWA<br />

website and donate to help fund vital research and<br />

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

Treendale Gardens respite is a six-bed respite facility in<br />

Australind, only <strong>15</strong>kms from Bunbury. This beautiful MSWA<br />

built facility opened in 2012. Each single room has a ceiling<br />

hoist for those that need it, a TV and shared accessible<br />

bathroom. We are able to support our clients with their<br />

various needs.<br />

We have a large communal dining room where you can enjoy<br />

wonderful homemade meals prepared by our staff. There<br />

is a roomy communal lounge area with a large TV and DVD<br />

player. Bring along your favourite DVDs or use ours. We have<br />

two outdoor courtyards, easily accessible for clients and<br />

their visitors, and we are right next door to a lovely park,<br />

with a lake, fountain and a wheelchair friendly path. We try<br />

to organise regular outings within the Australind and<br />

Bunbury region.<br />

Attached to, but closed off from the respite facility is a<br />

three-bedroom accessible family holiday unit. This is a<br />

fantastic innovation designed so families can come for a<br />

holiday together. One room has an electric bed if required<br />

and a ceiling hoist. The unit suits couples, families with young<br />

children and extended families. Everyone who has stayed<br />

so far has enjoyed the freedom of being in apartment style<br />

accommodation whilst knowing that staff are on hand to help<br />

with personal care if needed.<br />

Treendale Gardens<br />

respite and holiday unit<br />

Linda Kidd and Paula Kennedy<br />

The open plan area has a self contained kitchen with dining<br />

and lounge areas, a large TV, DVD player and Wii console with<br />

games available for use. There is a courtyard so you can sit<br />

outside and enjoy the fresh air. The holiday unit has its own<br />

garage and front door entry for privacy and the freedom to<br />

come and go at times that suit you and your family.<br />

If you would like more information please contact Linda<br />

Kidd on 9725 9209 or Paula Kennedy on 9725 9994,<br />

weekdays between 9am and 2pm.<br />

Scrooge’s Christmas<br />

Principal Academy of Dance and Theatre Arts and MSWA<br />

were pleased to present Scrooge’s Christmas to MSWA<br />

Members, just in time for Christmas in July. Held on 4 July<br />

at the Nexus Theatre at Murdoch University, the play was<br />

an adaptation of Charles Dickens’ much loved classic tale,<br />

A Christmas Carol.<br />

Over 100 Members and their families and carers enjoyed<br />

the dynamic and engaging retelling of the transformation<br />

of Ebenezer Scrooge from a cantankerous, miserable miser<br />

who values money above all else, to a joyous and generous<br />

human being that realises love and companionship are<br />

the true riches a life well lived has to offer. Members<br />

thoroughly enjoyed the performance and thanks go to the<br />

Principal Academy for putting on an amazing show for all!<br />

24 <strong>Spring</strong> 20<strong>15</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Spring</strong> 20<strong>15</strong> 25

Wilson Outreach News<br />

Nicola Ryan<br />

Bunbury Outreach News<br />

Keeping warm over winter has been lots of fun!<br />

In June we had a pyjama party complete with roasting<br />

marshmallows over a fire pit. Our Members braved the cold<br />

with blankets over their knees and were pleasantly surprised<br />

at just how much heat the fire pit gave out! Not to mention<br />

the smoke when it was lit under the patio (but we won’t go<br />

there!). This was yet another wonderful idea of Activities<br />

Officer Giselle, who certainly has been keeping the home fires<br />

burning over the last three months.<br />

One of our biggest events was Christmas in July when<br />

over 60 Members, Staff and volunteers enjoyed a week of<br />

beautiful roast lunches together with all the trimmings which<br />

went down a treat! The raffle was extremely popular and<br />

over $500 was raised. Our thanks must go to everyone who<br />

always supports the Outreach raffles.<br />

Gardening was again on the agenda. Our friends from<br />

Bunnings in Willetton planted our winter crop including<br />

broccoli, silver beet and cauliflower but so far the potatoes<br />

have been the most successful. Our vertical garden,<br />

constructed by Bunnings Subiaco, has a beautiful show of<br />

pansies. The Members enjoyed planting them and many<br />

others have enjoyed seeing them bloom.<br />

We were also lucky enough to have Duo 41 perform for us<br />

on a particularly wintery day. Their music was warming to<br />

the soul for all who were privileged to be here. Roger and<br />

Bill performed for us earlier in the year and are very popular<br />

as they play music from the early 40s. Members and Staff<br />

truly enjoy singing along with them and Frank, our masseuse,<br />

thoroughly enjoyed giving them a helping hand with the good<br />

old Irish jig. We hope to be having them visit again before the<br />

end of the year as they have made many friends at Wilson.<br />

As the winter season has well and truly descended upon us<br />

and we are all trying to avoid the dreaded colds and flu that<br />

come with it, many of our regular Members have taken the<br />

opportunity to fly off to warmer climates on holidays. But<br />

whilst our attendance numbers may have been slightly down,<br />

we have also warmly welcomed several new Members joining<br />

our Wednesday group meetings, adding a new dynamic to the<br />

friendly banter and camaraderie of our group.<br />

Staff numbers have also been on the rise as we welcome<br />

our new Physiotherapy Assistant Vanessa, second Masseuse<br />

Helen, full-time Occupational Therapist Janine and Assistant<br />

South West Staff Coordinator Carole to our Health Team.<br />

This has allowed Staff to maintain comprehensive services<br />

to Members attending Wednesday’s meetings and in the<br />

community throughout the South West region.<br />

Our usual fundraising activities have been very well supported<br />

by all Members and Staff at the group. Our two Soup Kitchen<br />

morning teas were heartily enjoyed by all diners. Many thanks<br />

to our soup chefs for donating their culinary skills and the<br />

ingredients. A big thank you also to our budding artist Louise<br />

for donating her two canvas’ for the “Originals” painting raffle,<br />

they are both one in a million art works and congratulations to<br />

our volunteer and lotto lady Marie for winning the “Guess the<br />

Fifty Dollar Note” prize just in time for her birthday.<br />

On 5 August we welcomed the Society’s CEO, Marcus Stafford,<br />

to the group for the regular CEO Update presentation, along<br />

with the exciting and long anticipated presentation of our<br />

new South West Outreach and Services centre. The building<br />

plans look amazing and were well received with a positive vibe<br />

around the room on the day from everyone there. The feedback<br />

from Members was that we all now have a tangible and positive<br />

outlook for the near future. Thank you MSWA!<br />

Southside Outreach News<br />

Angela Wallace<br />

Albany Outreach News<br />

Caroline Clark-Smith<br />

What fun we’ve been having over the past few months<br />

here at Southside!<br />

We had a very successful sausage sizzle at Bunnings at Port<br />

Kennedy. The store ran a raffle for the month of May to raise<br />

awareness of MS. The store donated an outdoor gas heater<br />

as the prize and raised $317. We raised a total of $600 and<br />

our thanks go to Bunnings for their support.<br />

Friday activities/themes are always popular. Beanie and Scarf<br />

Day in July kept us warm. Football’s Western Derby gave us<br />

the chance to dress up in our team’s favourite colours and<br />

some Members proved to be very passionate supporters<br />

-especially Kathy and Jacqui. And quizzes have kept us on<br />

our toes, so to speak!<br />

Beechboro Lodge: News from north of the river<br />

Zoe Harrison, Resource Coordinator<br />

Whilst our Eastside and Northside Outreach groups have been<br />

coming to the lodge since we opened the doors on 25 June,<br />

2003, both groups were formed long before this. Eastside<br />

is about to celebrate their 25th birthday on 14 September,<br />

20<strong>15</strong> and Northside is celebrating their 27th birthday on 25<br />

September 20<strong>15</strong>. We will close the centre on those days so<br />

all Members, Staff and volunteers can venture out to a local<br />

tavern for lunch and celebrate in style.<br />

Big thanks to Rosalie and her helpers in the kitchen for<br />

providing such a delicious turkey dinner for our Christmas in<br />

July party! We really do appreciate all the effort you put into<br />

making our Friday lunches so special.<br />

And speaking of food, Member Jenny is always surprising<br />

us with little home-baked treats – muffins, cakes etc. We are<br />

very grateful!<br />

Our Physiotherapy room has had a makeover with newly<br />

refurbished, repainted and recovered treatment beds, parallel<br />

bars. Thanks to Erin we now have a big mirror over the Moto<br />

Med. Now we can see what’s happening behind us! We would<br />

like to thank our Physiotherapist Sharon for all her efforts, the<br />

room feels and looks like new.<br />

Both groups attend the centre weekly to share stories, join<br />

in with the activities, work hard in the Physiotherapy room<br />

and enjoy a relaxing massage. Recently we celebrated with<br />

our annual Christmas in July party. There was a great festive<br />

spirit in the air with Christmas party games, marshmallows<br />

on sticks and a Christmas lunch for all to enjoy.<br />

We are all looking forward to the rest of the year with<br />

planned outings to the Chocolate Factory, guest speakers<br />

and our real Christmas in December party!<br />

We have been busy here in Albany this year with the Albany<br />

Swim for MS and all the visits from various Staff from Perth.<br />

It has been great for Members to be given the opportunity<br />

to have access to a speech therapist, counselling services,<br />

MSWA Welfare Officer and to Gail, our Community Programs<br />

Manager. If you missed out but are interested in speaking with<br />

any of the MSWA Staff, please contact Maureen, our local MS<br />

Nurse so we can keep you informed about future visits.<br />

Our CEO, Marcus, is always very well received. He gave<br />

us an update on the MS Society’s current financial status<br />

and the goals for the future. This includes the building of a<br />

high support accommodation facility here in Albany in the<br />

near future.<br />


We are pleased to have Lilli on board as our new<br />

Physiotherapist. A big thanks to all those who have taken the<br />

opportunity to have assessments and their exercise programs<br />

updated. She has been kept busy and is keen to help anyone<br />

who is interested.<br />

This year has gone by fast and we will need to get started on<br />

planning for next year’s Albany Swim for MS. It will take place<br />

in February, and will be here before we know it.<br />

If you have any local businesses in mind that may be able<br />

to donate goods, fundraising ideas, or if you can volunteer<br />

some time to help out in the lead up or on the day, please let<br />

us know. Many hands make it easier.<br />

We used some of the funds raised to buy a laptop and<br />

projector for use at the Group when we have guest speakers<br />

and other activities.<br />

A free monthly outing for Members.<br />

Transport to various picturesque venues<br />

around Perth can be arranged through<br />

the Wilson office.<br />

Please contact Sumit Sandhu<br />

for registration and inquiries.<br />

Phone – (08) 9365 4843<br />

Email – sumit.sandhu@mswa.org.au<br />

26 <strong>Spring</strong> 20<strong>15</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Spring</strong> 20<strong>15</strong> 27

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