MSWA Bulletin Magazine Spring 17_WEB

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

SPRING 20<strong>17</strong><br />

“While sketching Betty we chatted about everyday things<br />

over a cup of tea. Her modesty, optimism and faith<br />

has so inspired me to this day”<br />

Caroline Marinovich, Artist<br />






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

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

understanding of what to expect.<br />

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


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

Fax (08) 9451 4453<br />

Freecall 1800 287 367<br />

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




Sue Shapland: 9365 4840<br />


Manager Community<br />

Care Programs 9365 4851<br />

NDIS TEAM 9365 4824<br />


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

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

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

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


1 Mason Street, Davenport 6454 2800<br />


1/21 Cammilleri Street 9754 2320<br />


Manager, Chris Rush: 9385 9574<br />


Manager, Danuta Figurska: 9356 2747<br />


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



50 The Boulevard, Australind<br />

Manager, Linda Kidd: 9725 9209<br />


If you would like to comment<br />

on anything you read in this<br />

<strong>Bulletin</strong> please email<br />

bulletin@mswa.org.au<br />

or write to<br />

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

Bentley DC WA 6983<br />

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

mswa.org.au/bulletin<br />


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

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

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

Narelle Taylor, Leonie Wellington,<br />

Sarah Lorrimar, 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 />

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

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

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

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

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

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

and equipment.<br />

Rosemarie Dravnieks, Manager: 9365 4804 or OT Department: 9365 4888<br />

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

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

swallowing and/or communication difficulties. We equip Members with information and<br />

strategies to promote better communication and safe swallowing.<br />

Jamaica Grantis, Manager: 6454 3140<br />


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

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

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

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

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

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

To make an appointment please call:<br />

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

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

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

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

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

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

Irene Gallagher, Manager, Social Work: 9365 4835<br />

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

support networks.<br />

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

2 | <strong>MSWA</strong> BULLETIN SPRING 20<strong>17</strong>

Letter from the <strong>MSWA</strong> President<br />


I was recently delighted to announce that our CEO, Marcus<br />

Stafford, will be staying on at <strong>MSWA</strong>.<br />

After an initial recruitment process to appoint a new CEO<br />

after Marcus’s resignation in June, we have found the task<br />

of finding a new CEO, with the right skills, background and<br />

attributes more difficult than perhaps anticipated.<br />

There has been a lot of work done by Marcus, the Board and<br />

the leadership team to develop our ambitious strategic plan<br />

and Marcus is invested in this work. After some discussions,<br />

Marcus made the decision to remain in his position at the<br />

helm and continue as CEO.<br />

From the conversations I have had with several of you, I know<br />

you will be as pleased as I am about this news.<br />

Regards,<br />

George Pampacos<br />

<strong>MSWA</strong> President<br />

Inside | <strong>Spring</strong> 20<strong>17</strong><br />

Letter from the <strong>MSWA</strong> President 3<br />

From the desk of the CEO 4<br />

Letter from the Editor 5<br />

Vale Betty Cuthbert AM, MBE (1938 – 20<strong>17</strong>) 6<br />

A message from the General Manager<br />

– Member Services 7<br />

Round-up of research and other items of interest 8-9<br />

<strong>MSWA</strong> Funding Research Projects for MS<br />

and other neurological conditions 10<br />

OCREVUS (ocrelizumab) Latest medication<br />

added to PBS listing 11<br />

Discover our new <strong>MSWA</strong> resources! 12<br />

Welcoming our new Occupational Therapists 13<br />

Walking Aids: The Good, the Bad, and the Wobbly 14<br />

Counselling & Coffee – what’s the difference? 15<br />

NDIS Update 16<br />

Your Superannuation Insurance benefits<br />

– know your rights <strong>17</strong><br />

<strong>MSWA</strong> Maurice Blackburn Employment Forum <strong>17</strong><br />

The Reformation 18<br />

That’s Life with Narelle 19<br />

Annual <strong>MSWA</strong> Dinner Auction 20<br />

<strong>MSWA</strong> Volunteer Update 21<br />

The Sanctuary 22<br />

Fifth anniversary of Treendale Gardens 22<br />

News from the Great Southern<br />

Outreach Group (Albany) 23<br />

<strong>MSWA</strong> Southside Outreach News 23<br />

<strong>MSWA</strong> BULLETIN SPRING 20<strong>17</strong> | 3

From the desk of the CEO<br />


To quote the Bard! “Parting is such sweet sorrow”. So why<br />

experience that sorrow if it doesn’t make perfect sense?! The<br />

combination of the difficulty in finding my successor, paired<br />

with my commitment to the brilliant journey ahead, made the<br />

decision to stay on as <strong>MSWA</strong>’s CEO a delightfully easy one.<br />

As we work through the current strategic plan with discipline<br />

and passion and start to build our next one, I am truly excited<br />

about our future. An excitement that is translating into more<br />

work for the organisation’s managers and staff! Poor things.<br />

They might end up wishing that I’d gone away, after all!<br />

We are already into a new financial year and have so much to<br />

be proud of as we wrap up 2016-20<strong>17</strong>.<br />

The stand out success for this year was our record breaking<br />

contribution of $2.6 million to neurological research which is the<br />

largest in Australia’s history. Apart from the regular and ongoing<br />

support of a myriad of MS research projects, this includes:<br />

• $500,000 to the international research programme into<br />

progressive multiple sclerosis (MS);<br />

• $500,000 to WA research projects; and<br />

• $350,000 for research into other neurological conditions.<br />

On top of this, our care service hours increased by 8% for a<br />

total of 683,758 hours and our Annual Survey scores very<br />

highly, indicating that our Members are very satisfied with the<br />

care they receive.<br />

We have also been able to mark some big milestones in<br />

expanding our footprint. Earlier this month, we officially<br />

opened our brand new $1.5 million Community and Health<br />

Services Centre in Bunbury. I’m so pleased to have personally<br />

seen it open after all the hard work that’s gone into the<br />

Centre. My congratulations to all involved in bringing this<br />

award-winning facility to fruition. People with MS and other<br />

neurological conditions, living in Bunbury and the South-<br />

West, are now able to access a full range of services and<br />

support in these custom designed premises.<br />

At time of writing, there is no news on the State Government’s<br />

decision regarding the NDIS (National Disability Insurance<br />

Scheme) model. The signals continue to be mixed and with<br />

the passing of time, the roll out remains as per the signed bilaterals.<br />

My expectation is that the final model will probably<br />

have a Federal flavour, but retain a sensible degree of local<br />

autonomy. Words like ‘hybrid’ come to mind, although the<br />

devil will not only be in the detail, but also the ongoing tweaks<br />

and changes as the Scheme unfolds. Irrespective of the final<br />

nature of the model, <strong>MSWA</strong> will make it work!<br />

Meanwhile, within the organisation, business continues<br />

as usual, with the overarching philosophy of challenging<br />

everything that we do as we strive to get better and better.<br />

As we continue to grow services, build our footprint and fund<br />

research, we need our brand marketing and sales teams to<br />

help finance those lofty ambitions. And they are! On the very<br />

same week that I renewed my commitment to <strong>MSWA</strong>, the<br />

Annual Dinner and Auction delivered a fantastic result in what<br />

attendees described as the best one yet. Also, in the face<br />

of new competition, our Mega Home Lottery sold out. Our<br />

new General Manager of Brand, Marketing and Sales, Paul<br />

Cavanagh has just joined the team. He is a fantastic acquisition<br />

for us, bringing a fresh perspective and determination to build<br />

on the outstanding results already delivered. I congratulate<br />

Paul on joining the best organisation in Western Australia, if<br />

not Australia, if not the world. But perhaps I am a little biased,<br />

borne by my decision to stay!<br />

What’s coming up? As you know, we have secured land in Butler<br />

with plans to build a hub for services and accommodation, and<br />

we are now finalising plans for its development. Stay tuned.<br />

I look forward to the privilege of writing many more<br />

<strong>Bulletin</strong> articles as we continue our journey to help folk<br />

with MS and other neurological conditions.<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 damien.hill@mswa.org.au or call 9365 4814<br />

and let us know your current email address.<br />

4 | <strong>MSWA</strong> BULLETIN SPRING 20<strong>17</strong>

Letter from the Editor<br />


Welcome everyone to the spring edition of your <strong>Bulletin</strong>.<br />

We have more to celebrate this month than just the turning<br />

of the season as the decay of winter gives way to a time of<br />

renewal in spring. In the spirit of regeneration, we also have<br />

the celebration of Marcus withdrawing his resignation. This<br />

news became public when announced at the <strong>MSWA</strong> Dinner<br />

Auction on 24 August, and was met with a resounding ovation<br />

by everyone, punctuated with squeals of delight. On behalf of<br />

all people with multiple sclerosis, thank you Marcus.<br />

General Manager Member Services Sue Shapland succinctly<br />

sums up this moment in her article when saying that it “was<br />

really welcomed by Members and staff alike. With so many<br />

exciting plans for the next three or more years his leadership<br />

will be a real asset, as it has been for the past fifteen years.”<br />

Let me add that as a person who confessed in the previous<br />

edition of the <strong>Bulletin</strong> as being absolutely ‘drained’ by the<br />

news of his resignation, like many others who felt the same,<br />

we are now rejuvenated and more than delighted that Marcus<br />

has decided to remain as CEO.<br />

We also bring you the sad news from inside <strong>MSWA</strong>, of a great<br />

loss with the passing of Betty Cuthbert. I have lost count of<br />

how many times I have been asked how it is possible that<br />

the fastest woman in the world over all sprint distances was<br />

struck down with multiple sclerosis. The short answer was,<br />

and still is, nobody knows. It is also a question couched in<br />

scientific terms being asked by researchers funded by MS<br />

Research Australia, to which <strong>MSWA</strong> is a major contributor of<br />

research funding – $2.6 million this year.<br />

Is it a problem in the myelin producing cells themselves that<br />

causes them to begin dying? This could then trigger the<br />

immune and support cells in the brain to respond to clean<br />

up the damage and that in turn triggers a bigger immune<br />

response. Or is it a flaw in the immune system (which some<br />

of the genetic studies suggest) that allows the immune<br />

cells to become ‘trigger happy’ and set off an inflammatory<br />

response in the brain with minimal or no provocation? The<br />

mystery continues. But what is certain is that the work done<br />

by Dr Parratt and Professor Prineas helps us to rule out some<br />

possibilities and allows us to keep moving down other lines<br />

of investigation to bring us closer to solving the mystery (MS<br />

Wire, August 20<strong>17</strong>).<br />

The mystery therefore remains, and it is this tormenting illness<br />

that adds to the mystique which surrounds Betty Cuthbert and<br />

moves so many people to sing her praise. Bruce McAvney said<br />

in The West, “Betty is still the only Australian non-swimmer<br />

to win three gold medals at one Olympic Games and that’s<br />

an incredible feat.” A much-admired champion confined to a<br />

wheelchair, robbed of her speech and vision, Sue Shapland<br />

says ‘Goodbye’ to Betty on behalf of the Members and staff<br />

of <strong>MSWA</strong>. Vale Betty Cuthbert.<br />

All of this is true, but to my mind what also sets Betty apart<br />

from other Olympic champions is her battle with an evil<br />

disease, and in that regard Betty is no different to the rest<br />

of us who have been diagnosed with this illness. We must<br />

therefore never forget that incredible feats of endurance are<br />

also a daily occurrence performed with dignity by every person<br />

with multiple sclerosis, which includes every carer who rides<br />

the emotional rollercoaster alongside his or her loved one, a<br />

mystery journey caused by this nasty piece of work.<br />

Elsewhere in this edition, you will find the latest roundup<br />

of Research articles including the long-awaited release<br />

of OCREVUS (ocrelizumab), the latest medication added<br />

to the PBS listing. A lot of hope is pinned to this diseasemodifying<br />

drug which promises some relief for people with<br />

the progressive type of the disease. That prospect we shall<br />

just have to wait and see.<br />

Nigel Carey updates you on the NDIS; Maurice Blackburn,<br />

lawyers, discusses superannuation and employment. Rob Orr,<br />

Counsellor, tells us what the difference is between counselling<br />

and having coffee with a friend.<br />

We have the effervescent Dawn Burke contribution on<br />

volunteering, and our regular input from Ros Harman<br />

and Narelle Taylor. Finally, we have news from Treendale<br />

Gardens which celebrated its fifth birthday, and Albany<br />

brings us their latest Outreach news.<br />

<strong>MSWA</strong> BULLETIN SPRING 20<strong>17</strong> | 5

Vale Betty Cuthbert AM, MBE<br />

(1938 – 20<strong>17</strong>)<br />


Sadly, Olympian Betty Cuthbert, and <strong>MSWA</strong> Member, passed<br />

away in August aged 79. I was honoured to attend the funeral<br />

service held in Mandurah, on behalf of <strong>MSWA</strong>.<br />

To hear of her humble beginnings, her natural talent, dedication<br />

and hard work and her amazing achievements was really<br />

something special. Everyone who spoke of Betty, and most<br />

people who met her over the years, would agree she was a<br />

genuinely kind and gentle person who felt uncomfortable in<br />

the spotlight.<br />

Betty was an inspirational Olympian who set many records<br />

on the track; winning four gold medals in three distance<br />

events, the 100 metres, 200 metres and 4 x 100 metre relay<br />

events, in Olympics including Melbourne in 1956 and Rome in<br />

1960. She was the first Australian to win triple gold and was<br />

affectionately dubbed Australia’s ‘Golden Girl’.<br />

Betty started experiencing the first symptoms of MS in<br />

1969 but wasn’t diagnosed until 1974. She then became an<br />

advocate for people with MS and used her profile to raise<br />

awareness and much needed funds for MS research. She<br />

jointly launched MS Research Australia in 2004 with the<br />

former PM, John Howard AC at Parliament House.<br />

Two Research grants have been created in her name; the<br />

Betty Cuthbert Scholarship and the Betty Cuthbert Fellowship.<br />

These awards are jointly funded by the National Health and<br />

Medical Research Council (NHMRC), MS Research Australia<br />

and the Trish MS Research Foundation to assist research<br />

into the causes of MS and speed up the development of new<br />

treatments and therapies to reduce the effects of the disease.<br />

Betty also supported <strong>MSWA</strong> and MS Australia by appearing at<br />

events and donating items for auction.<br />

Betty was an all-round genuine champion and will be<br />

sadly missed by her family and those who had the privilege<br />

to meet her.<br />

<strong>MSWA</strong> would like to extend our sincere sympathy to her<br />

family and friends and in particular to Rhonda Gillam her<br />

dear friend and carer for many years. Rhonda travelled<br />

with Betty to many sporting and MS related events.<br />

References; Athletics Australia and MSRA.<br />

6 | <strong>MSWA</strong> BULLETIN SPRING 20<strong>17</strong>

A message from the General Manager –<br />

Member Services<br />


“Aim for success, not perfection. Never give up your right to be wrong, because then you will lose<br />

the ability to learn new things and move forward with your life.”<br />

Dr. David M. Burns.<br />

I thought this quote has many applications. Too often we<br />

strive for perfection and are critical of ourselves or others if<br />

things are less than perfect rather than celebrating success<br />

or achievement. I absolutely believe we are never too old to<br />

learn new things; in fact, research encourages us to do so to<br />

stave off the impact of ageing!<br />

This could also apply to the National Disability Insurance<br />

Scheme (NDIS). This massive social reform requires a huge<br />

commitment over the next 3-4 years to register approximately<br />

460,000 eligible Australians with the Scheme. While this is<br />

occurring, the funding is essential to those who have been<br />

registered thus far and renewing their plans annually. All the<br />

while the NDIS is evolving and no doubt this will continue<br />

for several years to come. It’s not a perfect Scheme yet, but<br />

the difference it is making for people living with disability is<br />

heartwarming. Of course, here in WA we are still awaiting the<br />

decision of which version we will be adopting, but thankfully<br />

this isn’t delaying the roll out of new sites.<br />

We recently had some great news for <strong>MSWA</strong> - Marcus our<br />

CEO is staying on! This was really welcomed by Members<br />

and staff alike. With so many exciting plans for the next 3 or<br />

more years, his leadership will be a real asset, as it has been<br />

for the past 15 years.<br />

The official opening of our Bunbury Hub took place in August,<br />

allowing us to proudly show off this fantastic facility. I would<br />

like to acknowledge grants received from The John and Beryl<br />

May Henderson Foundation and Lotterywest, which assisted<br />

with costs relating to the installation of the air conditioning<br />

and furniture fit out.<br />

The plans for our proposed Butler premises have been finalised<br />

and will soon go out to tender. I think each time we build, we<br />

improve on the design and layout and I am really looking<br />

forward to seeing this development take shape. We already<br />

have a list of potential residents for the accommodation facility.<br />

Time flies as we keep saying, but this year we see some<br />

milestones which bring that home. Fern River will be 20 in<br />

December, Beechboro is 14 and Treendale has been open for<br />

five years!<br />

An exciting announcement regarding the <strong>MSWA</strong> research<br />

funding for 20<strong>17</strong>/18: we have committed $2.6 million, another<br />

record amount. This latest funding allocation also includes<br />

a four-year commitment to support two exciting research<br />

positions in WA. The Perron Institute for Neurological and<br />

Translational Science, previously WANRI, will establish two<br />

roles, an <strong>MSWA</strong> Professor of MS and an <strong>MSWA</strong> Professor of<br />

Neuroplasticity which will benefit MS and other neurological<br />

conditions. $500,000 will be committed to research into<br />

progressive MS, through MS Research Alliance and the<br />

International Progressive MS Alliance.<br />

We recently had confirmation that another treatment has<br />

received PBS approval for relapsing remitting MS. Ocreluzimab<br />

is an infusion which has also shown some promise for<br />

progressive MS and we hope this will also be approved.<br />

When I started at <strong>MSWA</strong> in 2003 there were just four disease<br />

modifying therapies available for MS and they were new to<br />

the scene and the long-term benefits were unsure. We now<br />

have 12, giving greater choice and the opportunity to change<br />

therapies when needed to better manage disease activity,<br />

and long-term benefits are well documented.<br />

If you need any information about MS, managing your<br />

symptoms, or the latest therapies or research please<br />

contact one of our MS nurses through our main number,<br />

9365 4888 or email us at Get-in-touch@mswa.org.au.<br />

Our Member Services Team is here to support you.<br />

<strong>MSWA</strong> BULLETIN SPRING 20<strong>17</strong> | 7




From the UK MS Trust site:<br />

www.mstrust.org.uk/research/research-updates<br />

MS research update – How does<br />

staying in hospital affect your MS?<br />

Canadian researchers reviewed<br />

details of hospital stays for 2,100<br />

people with MS, over a 5-year<br />

period. 23% had been in hospital at<br />

least once and 7% more than once.<br />

It was found that following hospital<br />

stays there was a sharp increase in EDSS and on average<br />

that was equivalent to 2.5 years of progression. The increase<br />

in disability was greater for unplanned, emergency stays<br />

compared to planned stays, for admission to the intensive care<br />

unit, for hospital stays not related to MS and for longer rather<br />

than shorter lengths of stay.<br />

The results indicated that a sudden illness requiring a stay in<br />

hospital leads to an increase in disability. Many of the reasons<br />

for admission – bladder problems like urinary tract infections,<br />

bowel problems like constipation and respiratory problems –<br />

could be prevented with proactive care.<br />

Can we predict benign multiple sclerosis? Results of a 20-<br />

year long-term follow-up study. Sartori et al. Journal of<br />

Neurology 20<strong>17</strong>; 264:1068-1075.<br />

Canadian researchers wanted to see whether people<br />

considered to have benign MS (ie very mild relapses and low<br />

levels of disability some years after diagnosis) would still meet<br />

the definition after 10 years. They were also interested to know<br />

if it was possible to predict those people who were destined to<br />

have a benign course of MS as this would help identify people<br />

who might not need to take one of the disease modifying drugs.<br />

<strong>17</strong>5 people, from 5000 on the Ottawa MS clinic database,<br />

were identified as having an EDSS 3 or less 10 years after<br />

diagnosis; of these 63% remained benign at 20 years.<br />

The researchers commented that since none of the early<br />

clinical indicators could predict future course, they concluded<br />

that benign MS can only be used to describe someone’s<br />

experience of MS. The researchers did recognise there were<br />

several problems with the methods they used.<br />

They considered delaying disease modifying drugs (DMDs) in<br />

the hope of someone having and maintaining a benign status<br />

is risky, particularly as once it is clear that someone is no<br />

longer benign, they may have progressed to the point where<br />

DMDs are no longer effective.<br />

Tracking daily fatigue fluctuations in multiple sclerosis:<br />

ecological momentary assessment provides unique insights.<br />

Powell DJH, et al Journal of Behavioural Medicine 20<strong>17</strong><br />

Mar 9. [Epub ahead of print]<br />

Fatigue is one of the most common MS symptoms but the<br />

causes are not well understood. A wide range of factors<br />

contribute to fatigue, including low mood and stress at work<br />

or in personal relationships. The combination of contributing<br />

factors means that fatigue levels can vary from day to day and<br />

within a day, making it particularly hard to cope with.<br />

This UK study believed to be a first of its kind, sought to get<br />

a better picture of how fatigue levels vary from moment-tomoment<br />

and day-to-day whilst capturing details of people’s<br />

mood and their stress levels and recent physical activity.<br />

76 participants – 38 with RRMS and 38 without MS – recorded<br />

fatigue levels over 4 week days, together with details of their<br />

mood, exposure to stress and what they were doing at six<br />

time points during the day. At the start of the day, they were<br />

asked to rate the quality of the previous night’s sleep and in<br />

the evening, to score their overall fatigue level for the day.<br />

There were substantial moment-to-moment and day-to-day<br />

fluctuations in fatigue in people with RRMS. On average, their<br />

fatigue levels started higher and remained higher throughout<br />

the day, increasing more rapidly in the earlier part of the day,<br />

peaking in late afternoon then leveling off in the evening.<br />

In both groups, greater exposure to stress and low mood<br />

were associated with higher fatigue levels, positive mood<br />

with lower fatigue levels. Increased fatigue was associated<br />

with recent physical activity in people with MS but not in<br />

those without MS. Surprisingly, a poor night’s sleep did not<br />

affect the next day’s fatigue levels in people with MS but did<br />

increase fatigue levels in people without MS.<br />

Findings: This research highlights the individual variation in<br />

fatigue experienced by people with MS and reinforces the<br />

need for personalised approaches for effective management.<br />

Future studies of MS fatigue could explore ways to improve<br />

positive mood and respond to stress arising from personal<br />

relationships and the work environment. Ways to manage<br />

peak fatigue in the afternoon and after physical activity could<br />

also be explored.<br />

8 | <strong>MSWA</strong> BULLETIN SPRING 20<strong>17</strong>

Read more at:<br />

mswa.org.au/researchupdate<br />

From MS Research Australia:<br />

New research highlights the benefits of clinical trials<br />

Most people don’t think about the<br />

process which leads to us being able to<br />

buy our medications, nor do we think<br />

about how health care professionals<br />

make their treatment decisions. There<br />

is a long and complicated process to<br />

ensure that treatments are safe and<br />

effective, and the culmination of this<br />

process is clinical trials.<br />

Clinical trials are one of the key ways treatments are<br />

constantly improving; they test new treatments or compare<br />

treatments. Findings can lead to new treatment options, or<br />

highlight which treatment can bring about the best outcomes.<br />

MS Research Australia’s Clinical Trial Network, is a member<br />

of the Australian Clinical Trials Alliance (ACTA), which<br />

recently released a report quantifying the benefits of clinical<br />

trials for Australians.<br />

Their study assessed 25 different clinical trials, and the<br />

impact those trials had in Australia. They assessed a few<br />

outcomes, including the improved health of people on the<br />

trials and ongoing savings to the health system. They also<br />

took into consideration the cost of the clinical trials and cost<br />

of running the clinical trial networks that carried out the trials.<br />

The report found that the trials improved the health of<br />

participants and reduced health service costs, by up to $2<br />

billion AUD. 30% of this saving related to a reduction in health<br />

service costs – that is, because of better treatment, people in<br />

the trials were not so reliant on the health care system.<br />

They also found that for every $1 invested into the clinical trial<br />

networks that carried out the trials there was $5.80 return.<br />

These findings highlight the importance of clinical trials in<br />

enhancing the health care of people as well as the economic<br />

benefit of clinical trials networks.<br />

Participating in trials is a great way in which you can help<br />

accelerate the treatment options for people with MS, as well<br />

as potentially improving your own health care. On the MSRA<br />

website they list the trials currently under way in Australia and<br />

New Zealand, and information on how to become involved.<br />

These trials range from trial medications, to surveys about the<br />

psychological or other social impacts of MS and ways to prevent<br />

falls through new improved physical training methods. Some<br />

are simple surveys whereas others are more involved. If you are<br />

interested in participating in a study go to www.mstrials.org.au.<br />

From the Barts MS Blog:<br />

www.multiple-sclerosis-research.blogspot.com/<br />

A bygone era: AZA, MTX, CYC increase cancer risk in MS;<br />

Posted: 21 Aug 20<strong>17</strong> 04:00 PM PDT<br />

BMC Neurol. 20<strong>17</strong> Aug 8;<strong>17</strong>(1):155. doi: 10.1186/s12883-<br />

0<strong>17</strong>-0932-0.<br />

Association between multiple sclerosis, cancer risk, and<br />

immunosuppressant treatment: a cohort study. Ragonese P,<br />

Aridon P, et al.<br />

The association between MS and cancer has been<br />

investigated over the years with conflicting results. Several<br />

reports suggest an increased cancer risk among MS patients<br />

treated with immunosuppressant (IS) drugs.<br />

An Italian study reviewed 531 MS patients, who had<br />

previously used immunosuppressant therapies. The study<br />

showed a higher cancer risk in MS patients associated<br />

only to those with previous IS exposure. These include the<br />

older immunosuppressant drugs including azathioprine,<br />

mitoxantrone (MTX) and cyclophosphamide (CYC).<br />

The researchers commented that studies on long-term<br />

outcomes are essential to evaluate the possibility that<br />

treatment options that need to be considered for a long time<br />

period may modify risk for life threatening diseases.<br />

Minocycline as a neuroprotectant?<br />

Trial of Minocycline in a Clinically Isolated Syndrome of<br />

Multiple Sclerosis. Luanne M. Metz, M.D., David K.B. Li, M.D.,<br />

Anthony L. Traboulsee, M.D.; et al.<br />

Based on encouraging preliminary results, the authors<br />

conducted a randomized, controlled trial to determine whether<br />

minocycline reduces the risk of conversion from a first<br />

demyelinating event (CIS; clinically isolated syndrome) to MS.<br />

142 patients were randomised at 12 Canadian MS clinics; 72<br />

received the drug and 72 placebo.<br />

Conclusion: The risk of conversion from a clinically isolated<br />

syndrome to MS was significantly lower with minocycline<br />

than with placebo over 6 months but not over 24 months.<br />

It was noted that there were more reported adverse events<br />

and side effects in the treated group and the study was small;<br />

however, it was of interest and no doubt more trials will be<br />

conducted.<br />

<strong>MSWA</strong> BULLETIN SPRING 20<strong>17</strong> | 9

<strong>MSWA</strong> FUNDING RESEARCH<br />




As many of you would know, <strong>MSWA</strong> has a long and proud<br />

history of supporting MS research efforts in Australia. Over<br />

the years we have increased our contributions steadily<br />

and over the past three years this has amounted to over<br />

$2 million annually.<br />

These funds have been allocated to MSRA who then assess<br />

the applications for funding they receive and allocate<br />

the dollars accordingly. We have supported a number of<br />

significant projects over the years including PREVANZ, the<br />

Stem Cell registry, the Australian MS Longitudinal Study, the<br />

PhoCIS study and the international Progressive MS Alliance.<br />

<strong>MSWA</strong> continues to contribute significant funds to MS<br />

Research Alliance to support MS research efforts into the<br />

cause, better treatments and ultimately a cure. We have again<br />

requested that $500,000 be allocated to the Progressive<br />

MS Alliance.<br />

Here in WA we allocated three Post-Doctoral Research<br />

Fellowships funding for two years: supporting their important<br />

work evaluating light therapy as a potential preventative<br />

treatment option for people who have had a single episode<br />

of MS; evaluation of outcomes for a series of patients who<br />

received stem cell therapy; review of MS cases to try and<br />

identify predictors of disease progression and exploring the<br />

potential links of diet with causation of MS and potential<br />

benefit as part of lifestyle modification after diagnosis.<br />

We have also funded local research projects into effectiveness<br />

of self-management fatigue programs, cognitive rehabilitation<br />

therapy and balance rehabilitation interventions including the<br />

use of non-invasive brain stimulation as an additional therapy.<br />

This financial year we are proud to announce additional<br />

funding has been allocated for both MS research here in WA<br />

as well as nationally and internationally, and for research<br />

benefitting people living with other neurological conditions.<br />

Two new exciting positions will be funded, annually for four<br />

years, through the Perron Institute for Neurological and<br />

Translational Science in Nedlands (previously WANRI). One<br />

position will become the <strong>MSWA</strong> Professor for MS Research<br />

and the other the <strong>MSWA</strong> Professor for Neuroplasticity. These<br />

positions will drive research projects that we anticipate will<br />

add significant value in these fields. Neuroplasticity research<br />

seeks to develop therapies and interventions that encourage<br />

new pathways to overcome areas of damage and improve<br />

function. This research will be applicable across a range<br />

of neurological conditions including stroke, brain injury and<br />

multiple sclerosis.<br />

In addition to this funding we are proud to announce<br />

additional funding has been allocated to The Perron Institute<br />

for their stroke research arm. This will provide support for<br />

renowned local researcher Professor Bruce Meloni who has<br />

been studying neuroprotection for many years. He will now be<br />

progressing his research into identifying potential therapies<br />

to maximise protection and reduce damage in stroke, head<br />

injury and other related conditions.<br />

<strong>MSWA</strong> is proud to announce these exciting developments<br />

and we look forward to continuing our great partnership<br />

with the Perron Institute and providing our Members and the<br />

community progress updates as we receive them.<br />

I would like to acknowledge the great vision and<br />

leadership shown by our CEO Marcus Stafford, and<br />

our Board which has allowed us to identify beneficial<br />

research projects and fund them.<br />

Want to access research articles?<br />

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

articles relating to multiple sclerosis:<br />

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

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

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

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

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

10 | <strong>MSWA</strong> BULLETIN SPRING 20<strong>17</strong>




In July 20<strong>17</strong> Ocrelizumab (OCREVUS) was approved by the<br />

Australian Therapeutic Goods Administration (TGA) for the<br />

treatment of relapsing forms of multiple sclerosis and primary<br />

progressive multiple sclerosis (MS). It is hoped that the drug<br />

will be available for PBS use as early as October this year for<br />

relapsing forms of MS, and available for use in progressive<br />

MS in the near future.<br />

Ocrevus is a humanised monoclonal antibody designed to<br />

target CD20-positive B cells, a specific type of immune cell<br />

thought to be a key contributor to myelin (nerve cell insulation<br />

and support) and axonal (nerve cell) damage. This nerve<br />

cell damage can lead to disability in people with MS. Based<br />

on preclinical studies, Ocrevus binds to CD20 cell surface<br />

proteins expressed on certain B cells, but not on stem cells<br />

or plasma cells, and therefore important functions of the<br />

immune system may be preserved.<br />

Ocrevus is administered by intravenous infusion every six<br />

months. The initial dose is given as two 300 mg infusions<br />

two weeks apart. Subsequent doses are then given as single<br />

600 mg infusions, 6 monthly.<br />

As with all MS medications, the efficacy, side-effect profiles<br />

and tolerability of a drug can vary greatly between individuals,<br />

and it is for this reason that a range of affordable treatment<br />

options is necessary to increase the chance of every individual<br />

finding an effective and well tolerated treatment that suits<br />

their individual circumstances.<br />

With a different mechanism of action, different method<br />

and timing of delivery, Ocrevus has been shown to be<br />

largely well tolerated by people with MS. It has shown a<br />

high level of efficacy in comparison to first-generation<br />

MS treatments with, importantly, a relatively good safety<br />

profile. Serious infections occurred in 1.3% of people<br />

receiving Ocrevus treatment, and neoplasms occurred<br />

in 0.5%. The most common side effect, infusion-related<br />

reactions, occurred in 34.3% of people being treated<br />

with Ocrevus.<br />

For more information speak with your neurologist, an<br />

<strong>MSWA</strong> MS nurse, or read the UK MS Trust website –<br />

search the A-Z Fact sheets.<br />


All Hands-on Deck:<br />

Two different training programs to reduce fatigue and improve<br />

strength, dexterity and support activities of daily living in<br />

adults with Multiple Sclerosis.<br />

WE NEED YOU!<br />

Seeking adults with MS who are willing to gain the upper<br />

hand by participating in a 4-week home-based study.<br />

Aim of the study:<br />

We want to look at the impact of two separate home-based<br />

training programs, (1) fine motor training OR (2) strength and<br />

yoga training to see how they affect fatigue, and activities of<br />

daily living (ADLs).<br />

What the study involves:<br />

Participants will either be randomly allocated to the Fine<br />

Motor group, or the Strength/Yoga group and both programs<br />

will be completed at home. Each training program will run<br />

for a total of four weeks, and will be completed four days per<br />

week, with each session taking approximately 30 minutes.<br />

Requirements to be involved:<br />

1. Attain medical clearance from your GP/Neurologist.<br />

2. Attend an orientation session (to be held at <strong>MSWA</strong>, Wilson)<br />

so we can show you the basic exercises.<br />

Eligibility:<br />

Male and female adults (over 18) no ongoing relapse, upper<br />

extremity dysfunction due to muscle weakness related to<br />

their MS, ability to use test materials with capable cognitive<br />

function, and have not previously engaged in an upper limb<br />

exercise program.<br />

Contact Details:<br />

Lead Researcher: Lauren Jones<br />

Email:<br />

lauren.jones2@my.nd.edu.au<br />

<strong>MSWA</strong> BULLETIN SPRING 20<strong>17</strong> | 11


<strong>MSWA</strong> RESOURCES!<br />


Over the past year, <strong>MSWA</strong> staff have been working together<br />

to create and develop new educational material for our<br />

Members. We have collaborated with external professionals,<br />

such as nutritionists from Curtin University, to ensure we have<br />

the best information that is both relevant and up to date.<br />

Our resources cover information on a variety of topics to help<br />

you live well with MS. In fact, many of the information cards<br />

cover material on general wellbeing and can be shared with<br />

your friends and family!<br />

Some of our new resources include:<br />

• Cognition – Information and Workbook<br />

• Nutritional Guidelines in Multiple Sclerosis – Edition Three<br />

• Healthy Sleep<br />

• Thinking and Memory<br />

• Keeping Your Brain Healthy<br />

Stay tuned as we work on a new and engaging format<br />

for our educational material. If you would like further<br />

information or would like a copy of any of the above,<br />

please contact our Health Education and Peer Support<br />

Coordinator, Sarah Lorrimar on 9365 4858 or email<br />

Sarah.Lorrimar@mswa.org.au<br />

Un baguette.<br />

S’il vous plait, mate.<br />

Fold, Pack, Travel<br />

1300 622 633 www.scootersAus.com.au<br />

WH20495/Intouch<br />

WH20495 ScootersAust_Intouch-90Hx210mmW.indd 1<br />

1/2/<strong>17</strong> 12:42 pm<br />

12 | <strong>MSWA</strong> BULLETIN SPRING 20<strong>17</strong>





Hi, my name is Ian. I completed my occupational therapy<br />

training at Curtin University, receiving the Head of the School<br />

Award and Outstanding Mentor Award. Prior to taking up<br />

OT, I was a computer science graduate from the University<br />

of Western Australia and worked in the areas of technology<br />

usability and human-computer interaction for 15+ years.<br />

This experience has enhanced my skill set.<br />

I strongly believe that when people can participate in<br />

activities they truly enjoy, their health and wellbeing will be<br />

greatly improved. I thrive on helping others express the best<br />

version of themselves by honouring their unique personality<br />

and working around their strengths.<br />

Before joining <strong>MSWA</strong>, I was the principal OT at Burswood<br />

Health, an interdisciplinary pain management clinic, focussing<br />

on chronic pain rehabilitation and soft tissue therapy. I also<br />

worked with VisAbility (formerly the WA Association for<br />

the Blind), where I focused on designing smart assistive<br />

technology and low vision rehabilitation programmes for<br />

clients with vision impairment and acquired brain injury.<br />

In my free time, I enjoy hiking, yoga and spending time with<br />

people who like to laugh out loud.<br />


<strong>MSWA</strong> OCCUPATIONAL THERAPIST<br />

My name is Verity, and I am an <strong>MSWA</strong> Occupational Therapist<br />

based at Wilson. I may look familiar, as I previously worked<br />

at <strong>MSWA</strong> for three years before leaving to try something new.<br />

For the last two years I have worked at TADWA, with a focus<br />

on assessing for aids and equipment and home modifications<br />

for people under HACC and/or receiving home care packages.<br />

In the past, I worked in residential aged care and transitional<br />

care facilities. I am very happy to be back at <strong>MSWA</strong> – it is<br />

wonderful to see so many familiar faces, as well as meet<br />

plenty of new ones!<br />

The thing I enjoy the most about my work is being able<br />

to support people to remain as safe and independent<br />

as possible. I love that every individual is different, having<br />

unique challenges to overcome and goals to meet; it keeps<br />

my job interesting and means that I am always learning<br />

something new.<br />

When I’m not at work I can usually be found at the gym,<br />

baking up a storm in the kitchen, or spending time with my<br />

puppy and family.<br />

<strong>MSWA</strong> BULLETIN SPRING 20<strong>17</strong> | 13




Would you buy a suit without trying it on first? Or buy a car<br />

without sitting in it or even looking under the bonnet? I hope<br />

you answered no. If you answered yes, I have some clothes<br />

and a car for sale.<br />

It never fails to surprise me how many people buy walking<br />

aids (sticks, crutches, walkers) without researching whether<br />

they are the correct aid for their level of function, or if they are<br />

even the correct size!<br />

Furthermore, most people go years without ever checking or<br />

servicing their walking aid. I have seen people using walking<br />

sticks that have completely worn through the rubber foot<br />

(ferrule), and are walking on the slippery metal post beneath.<br />

I have seen others using walking frames whose brakes don’t<br />

work, and even using aids that are broken!<br />

When I was working in an aged-care facility I even met one<br />

unfortunate fellow whose family had bought him a paediatric<br />

4 Wheeled Walker and couldn’t work out why he kept falling<br />

when he was walking with it.<br />

I am regularly adjusting aids, replacing ferrules, handles,<br />

tightening brakes etc. It is concerning how few people realise<br />

there is a problem with their aid.<br />

An improper aid is unsafe, and it goes without saying that this<br />

can increase your risk of falling. Some lesser known problems<br />

associated with using the wrong aid are:<br />

• shoulder, neck, back, and arm pain (such as tennis elbow,<br />

carpal tunnel syndrome, thoracic outlet syndrome)<br />

• abnormal gait patterns (that can cause muscle imbalances,<br />

and in some cases damage knee and ankle joints).<br />

Before purchasing a walking aid, we strongly recommend you<br />

have an assessment with one of our physiotherapists.<br />

During the assessment, we will test your balance, strength,<br />

and your gait pattern, to determine which aid is most suited<br />

to you and your lifestyle.<br />

Not only that, but we stock replacement ferrules and have<br />

several types of sticks and crutches that we sell at wholesale<br />

price (we make no profit off these, you pay the same price as<br />

we paid for them) and in some cases, we may be able to apply<br />

for funding through certain organisations to cover part or all<br />

of the cost of a new walking aid.<br />

Also, if you happen to find a fancy new walking aid that<br />

glows in the dark, has yellow speed stripes and is made from<br />

aerospace materials, please let us know about it. We may be<br />

able to buy the aid at the wholesale price as a not-for-profit<br />

organisation.<br />

For more information on how to select an appropriate<br />

walking aid or if you have any questions, please contact<br />

the <strong>MSWA</strong> Physiotherapy department 9365 4888.<br />

14 | <strong>MSWA</strong> BULLETIN SPRING 20<strong>17</strong>



ROB ORR, <strong>MSWA</strong> COUNSELLOR<br />

It’s commonly accepted wisdom that if you are experiencing<br />

some life difficulty and/or emotional distress, talking about<br />

it to someone can be helpful. We believe in expressions like<br />

’don’t bottle things up’, ‘get it out in the open’, ‘a problem<br />

shared is a problem halved’ and many more – all of which<br />

support this idea. When discussing the concept of meeting<br />

with a counsellor, you might also hear people say “Having<br />

coffee with a friend (or a beer with your mates), is all the<br />

therapy you need”.<br />

It’s true that talking to a friend can help you sort through your<br />

thoughts and put problems in perspective. They might just<br />

listen sympathetically, or may suggest solutions. Typically you<br />

would expect to feel comfortable and emotionally supported<br />

by your friend, who also knows you and your past history.<br />

It’s reasonable to raise the question, “Do you need a friend<br />

or a counsellor?”, when it seems that talking with a friend<br />

produces tangible benefits.<br />

First, it’s important to understand that counselling and coffee<br />

aren’t mutually exclusive – you don’t need to do one OR the<br />

other. It’s perfectly fine and appropriate to do both.<br />

Second, there are several reasons why, although you have<br />

good friends to talk to, you may want to consider including<br />

meeting with a counsellor as well. Some of the differences<br />

between meeting with a friend and meeting with a counsellor<br />

include the following:<br />

• Friendship is based on each person getting a chance to<br />

share their thoughts and their problems. When you meet<br />

with a counsellor you get a chance to make that time all<br />

about you.<br />

• A counsellor is objective – they stand outside your life, don’t<br />

judge, and don’t have a history with you and other people<br />

in your life. This allows them to be non-judgmental, and to<br />

suggest solutions which you may not have thought of.<br />

• Counsellors are professionals, trained to be effective<br />

listeners. A counsellor will notice your patterns of behaviour<br />

that are unproductive, and utilise strategies that have been<br />

shown to assist in changing those behaviours.<br />

• Although you’d expect friends to keep confidences you may<br />

tell them, sometimes your friend may end up in an awkward<br />

social situation as a result. A counsellor is a professional<br />

who always maintains confidentiality according to<br />

ethical guidelines, and won’t end up under pressure to<br />

divulge confidences.<br />

• If you are facing a serious long-term challenge, you may<br />

need to talk about the problems over a longer period than<br />

a friend is comfortable listening to them. A counsellor will<br />

understand this and ‘meet you where you are at’, not where<br />

a friend ‘thinks you should be’.<br />

• A friend might prefer for you to move on in life, but providing<br />

support and a sympathetic ear doesn’t always achieve that.<br />

Often when discussing problems with a friend the focus<br />

is on other people you may both know, and how they<br />

have behaved.<br />

• Because of counsellor objectivity and the nature of the<br />

counselling relationship, the focus is on you, and what you<br />

can do to improve. A counsellor is skilled at helping you<br />

move on beyond your current situation.<br />

• As wonderful as friends are, sometimes you require an<br />

expert to help you to cope with the difficulties that you’re<br />

experiencing, as difficulties arise that the best of friends<br />

do not have the expertise to help us tackle. Placing an<br />

additional ‘counselling’ expectation on a friendship can also<br />

cause unnecessary strain on that friendship.<br />

These points serve to highlight the differences between<br />

talking with a friend and meeting with a professional<br />

counsellor. To summarise, a chat with a friend should leave<br />

you feeling good, accepted and cared about. A series of<br />

meetings with a counsellor should leave you feeling listened<br />

to, understood, and should assist you in moving on with your<br />

life in a professional way.<br />

So, do you need a friend or a counsellor? Thankfully, you<br />

don’t need to choose, both have their place, and you can<br />

enjoy the benefits that each provides.<br />

<strong>MSWA</strong> BULLETIN SPRING 20<strong>17</strong> | 15





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

reached a major milestone with over 100,000 Australians<br />

with disability now receiving life-changing supports funded<br />

through the Scheme.<br />

These supports, which enable our Clients to live a more<br />

independent life, include personal care and support, access<br />

to the community, employment pathways, therapy services<br />

and essential equipment.<br />

In WA, the NDIS also continues to grow rapidly and attract<br />

new participants across the roll out site areas.<br />

<strong>MSWA</strong> is currently supporting over 300 clients, with both<br />

MS and other neurological conditions, with funding under the<br />

Scheme. This represents a growth rate of over 100% over the<br />

past 12 months. Incidentally the average value of a WA NDIS<br />

plan is now $35,000!<br />

The full list of the WA trial sites is now as follows:<br />

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

• Cockburn and Kwinana<br />

• Armadale, Serpentine-Jarrahdale and Murray (Pinjarra)<br />

• City of Swan, Kalamunda and Mundaring<br />

• Bayswater, Bassendean, Toodyay, Chittering, Northam<br />

and York<br />

• Mandurah and Rockingham<br />

Our team holds local NDIS Information Sessions. These sessions<br />

enable attendees to better understand the NDIS and make<br />

informed decisions about registering for supports with the NDIS,<br />

and what they can include in their plan.<br />


<strong>MSWA</strong> has recently introduced some new services which can<br />

be funded under the NDIS:<br />

• Nutrition (delivered by the Speech Pathology Department)<br />

• Continence and Catheter Management (delivered by the<br />

Nursing team)<br />

• Gardening (via Individual Options)<br />

• Massage is also increasingly popular (delivered by the<br />

Physio team)<br />

<strong>MSWA</strong> is also expanding its geographical reach with new<br />

on-the-ground facilities planned very soon for Armadale<br />

and Mandurah.<br />




Our friendly <strong>MSWA</strong> NDIS team is always available to answer all<br />

your questions and advise you on the services we can offer you.<br />

We have a one stop shop to deliver a very smooth and easy<br />

customer journey!<br />

Please contact Christine Richards, Client Relationship Coordinator,<br />

for more information on how we can help you.<br />

Her details are as follows:<br />

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

Phone: 9365 4867<br />

Find out more about the NDIS by visiting the <strong>MSWA</strong> website:<br />

mswa.org.au/ndis_services<br />


We are interested to learn more about your experiences under<br />

the NDIS. Drop us a line and tell us how the NDIS has helped<br />

you, and even how it could have provided a better experience<br />

for you.<br />

It can be as brief or as long as you like. Send your<br />

thoughts to: Nigel Carey (NDIS Business Development<br />

Manager) at nigel.carey@mswa.org.au.<br />

The three most compelling stories will each receive a<br />

$100 shopping voucher!<br />

16 | <strong>MSWA</strong> BULLETIN SPRING 20<strong>17</strong>




Disability insurance is not typically at the forefront of the<br />

minds of many Australians, with many of us severely underinsured<br />

and unaware of insurance benefits attached to<br />

superannuation memberships.<br />

People living with multiple sclerosis and other neurological<br />

conditions can find it difficult to access any type of financial<br />

benefit or support after ceasing work due to their condition.<br />

This is particularly so when a person’s reason for stopping<br />

work is not covered by a statutory compensation scheme,<br />

such as WorkCover or the Insurance Commission of WA.<br />

In these circumstances, people can often access the benefits<br />

of disability insurance policies through their superannuation<br />

membership. In investigations conducted by our office, we have<br />

successfully claimed insurance benefits for our clients even if<br />

they stopped work several years ago due to illness or injury.<br />

There are two common types of disability insurance offered<br />

by super funds:<br />

• Income protection (IP) generally provides monthly payments<br />

of 75-85% of your previous earnings (capped at a specified<br />

amount) when you can’t work for a period of 2 years, 5<br />

years or sometimes even up to the age 67;<br />

• Total and Permanent Disability (TPD) insurance benefits are<br />

generally lump sums you can claim if you cannot return to<br />

any work in which you are educated, trained or experienced<br />

as a result of injury or illness.<br />

Please note:<br />

• Even if you stopped work many years ago, you can still<br />

make a claim. A claim can be made even if your insurance<br />

cover ceased between the time you stopped work and now,<br />

as long as you were a member of the super fund at the date<br />

you last actively worked.<br />

• Most Australians have more than one super fund meaning<br />

you may have multiple TPD insurances, and may be able to<br />

pursue multiple lump sum claims. You should seek advice<br />

about the implications of consolidating super accounts as<br />

you may be putting at risk potential insurance benefits.<br />

• If you are thinking about stopping work or reducing your<br />

work hours due to your medical condition it is important<br />

to get advice regarding the implications for your insurance<br />

coverage; there may be clauses in the fine print of your<br />

policy that will impact on your rights to claim later.<br />

You may have similar disability insurance through your<br />

employment contract or EBA or through your financial<br />

institution. It is always worth getting advice to make a claim<br />

in order to avoid any nasty surprises.<br />

Our experienced team of paralegals and lawyers will provide<br />

a ‘free check’ to ensure you have the cover. Once this is<br />

confirmed, our local Perth team will meet you, and provide<br />

expert legal guidance through the complexity of lodging claim<br />

forms and necessary evidence. They will also manage the<br />

legal issues that may arise during the claims process.<br />

It is never too late to check. If you have ceased working due<br />

to your MS or other neurological condition then contact<br />

Maurice Blackburn on 1800 196 050 for free advice on<br />

any superannuation or insurance questions, to check your<br />

potential cover for benefits, or help with an existing claim.<br />

www.mauriceblackburn.com.au/legal-services/<br />

superannuation-and-insurance/<br />

<strong>MSWA</strong> MAURICE BLACKBURN<br />



Joshua Boyes, Lawyer at Maurice Blackburn,<br />

made a welcome return to <strong>MSWA</strong> to present more<br />

information forums, at both the Wilson Centre and<br />

our Bunbury Hub.<br />

These seminars were targeted towards<br />

Members currently working or who have stopped<br />

working due to their MS and aimed to increase<br />

Members’ understanding of their legal rights<br />

surrounding employment.<br />

Joshua offered his time free of charge to provide<br />

our Members, Clients and their families, valuable<br />

information on issues such as disclosure in the<br />

workplace, stopping and starting work, travel<br />

insurance and disability claims. He also covered the<br />

topic of superannuation benefits; specifically, the<br />

claiming of a disability lump sum or pension under a<br />

superannuation fund.<br />

As always, this visit from Maurice Blackburn was<br />

another great success. Since the last presentation<br />

in November 2016 there has been an ongoing stream<br />

of calls to Joshua right up until last month!<br />

It is important to keep informed of your rights<br />

as well as the advice and services available to<br />

you. For further legal information, you may<br />

contact Joshua Boyes on 6424 4207 or email<br />

JBoyes@mauriceblackburn.com.au<br />

<strong>MSWA</strong> BULLETIN SPRING 20<strong>17</strong> | <strong>17</strong>



Who amongst you, dear readers, doesn’t remember the<br />

aerobics craze of the 1980s? Be honest. Who owned a bright<br />

coloured lycra, high-cut leotard and shiny tights? Did you<br />

have thick, slouchy leg warmers? I certainly did. Jane Fonda,<br />

you’ve got a lot to answer for.<br />

Aerobics was the way to get fit in the ‘80s. All around the<br />

country we headed to the gym to stretch, jump and sweat<br />

to heart-pumping music, all looking alike in our fluorescent<br />

exercise clothes and big hair.<br />

I don’t hear about aerobics much any more. Today, it’s all<br />

about Pilates. Everyone, from my 26 year old daughter to my<br />

70 year old neighbour, is doing it.<br />

When I first heard about Pilates I assumed it was another<br />

fad that would come and go and be largely irrelevant to me.<br />

Getting in and out of bed each day is often as much exercise<br />

as I can be bothered with.<br />

But that changed when my boyfriend bought a second-hand<br />

Pilates machine and installed it in the spare room. Admittedly<br />

I was dubious at first, but with his encouragement and<br />

assistance I managed to get on it and start moving. I was<br />

pleasantly surprised to discover that there were things I could<br />

do that used my muscles, but didn’t actually hurt. And with<br />

a bit of clever fiddling with furniture leg raisers, I could even<br />

transfer on to it from my wheelchair by myself.<br />

This Pilates machine is called The Reformer, which I think<br />

is very appropriate. Every New Year for as long as I can<br />

remember I have made resolutions about doing more exercise<br />

and getting stronger, only to slip into my usual lazy habits by<br />

mid January. Since having access to the Pilates machine, I<br />

am a reformed person! About four times a week I spend thirty<br />

minutes on the machine, and after only a few weeks, I am<br />

noticing some improvements. I am scared to get too excited,<br />

but I think my legs might be getting a little bit stronger, and<br />

as for my abdominal muscles, well....it’s too soon to be<br />

mentioning six packs but I am almost certain that under the<br />

soft belly fat there is a layer of something firm.<br />

I find that this tiny bit of success is going to my head. The MS<br />

centre at Wilson has now got a Pilates machine in their gym,<br />

and I’m actually looking forward to my next exercise program<br />

so I can show off what I can do.<br />

While I don’t believe I will be able to resume the aerobics<br />

classes of the ‘80s, I am starting to imagine all sorts of things.<br />

I feel that my back is getting straighter, my stomach flatter<br />

and my shoulders less rounded. I imagine myself being able<br />

to transfer from my wheelchair gracefully. I dream of things<br />

which involve strong muscles and a svelte physique, things<br />

like – dare I say it – walking. Well, walking with a walker for<br />

now. Let’s start with the possible; miracles can wait for later.<br />

I think I will buy a pink leotard and blue tights. Maybe<br />

even a headband to hold back my big hair. Aye, there’s<br />

the rub, as the bard would say. For that dream of youthful<br />

vigour to work, I’d better dye my grey roots first.<br />

18 | <strong>MSWA</strong> BULLETIN SPRING 20<strong>17</strong>




I reckon the secret to living a life of creditable achievement<br />

and contribution is to firstly, remain alert and ‘in touch’. That<br />

way, we’re then aware of what needs to be done.<br />

Those of us that just sit around, waiting for things to happen,<br />

may well be responsible for slowing down the progress<br />

of civilisation.<br />

I’ve met people who’ve probably held up its progress for<br />

thousands of years. They invariably are doing nothing except<br />

expecting something to happen even though they have made<br />

no contribution to alter the way things are. If we can’t be<br />

innovative, let’s just be very good at what we’ve always been<br />

good at.<br />

If we strive for improvement, we must be contributing<br />

to progress.<br />

Lately I’ve done some intensive daydreaming about swimming<br />

classes for me. I’d attend them regularly at, say, Beatty Park,<br />

for serious swimmers, not far from here.<br />

When I was young, and ‘in training’, my Dad would drive me<br />

to the pool each morning. I reckon I could adhere well to that<br />

kind of routine these days … I could easily get back into it.<br />

My father still goes to the beach each morning where he lives,<br />

in Sydney, and I think it’s his swimming, his regular exercise,<br />

that keeps him so mentally sharp as well as physically fit. I’m<br />

hoping some regular physical activity will work like that for<br />

me too.<br />

Dad turned 91 last March and competed in the Masters World<br />

Swimming Championships in April, in Auckland, NZ. As a<br />

result, he is currently the World Champion 91 year old for<br />

200 metres, 100 and 50 metres Freestyle as well as the 50<br />

metres Backstroke. My planned aqua-therapy will release me<br />

into the world of competitive swimming. I can, when out of this<br />

wheelchair and into the water, finely-tune my own swimming<br />

skills. I’ll challenge other people doing aqua-therapy. They’ll<br />

be trembling in their floaties.<br />

My sporty grandchildren Claire, Alby, Max, Milla and Lucy.<br />

There are members of my family (grandchildren), who excel in<br />

all different kinds of sport but I don’t think any of them feels<br />

threatened by my wanting to get back into form. My 15 year<br />

old granddaughter Milla, plays State Basketball, and is going<br />

with her team to play in America before Christmas. I’m just so<br />

pleased, especially for her sake, that she has grown so tall (as<br />

per my instruction), and practiced and trained so hard (also<br />

my suggestion). Besides having to do all that to qualify, she,<br />

like me, is a ‘natural’. Her teenage brother, Max, is an Aussie<br />

Rules football star of sorts and their cousin Claire, is a Karate<br />

dynamo. Sporting prowess is something our entire family is<br />

used to achieving.<br />

Getting older has denuded my plans for excellence in sport.<br />

Multiple sclerosis may have kept my ambitions in check but<br />

it’s provided me with a fairly plausible excuse for not always<br />

performing excellently. The long-awaited for and finally<br />

available drug to treat Progressive MS may be fairly useful for<br />

completing my plans of achieving excellence. It’s just a matter<br />

of time. I think that once cured, I’ll only need about 20 years of<br />

physiotherapy and then, the world will be my oyster.<br />

All the grandchildren will each be excelling in their<br />

chosen sport and I will be committed to my tactical<br />

physiotherapy and will be jet-streaming in the pool.<br />

It will be great.<br />

<strong>MSWA</strong> BULLETIN SPRING 20<strong>17</strong> | 19

ANNUAL <strong>MSWA</strong><br />


GAIL SZABO, <strong>MSWA</strong> MANAGER - EVENTS<br />

George Pampacos, <strong>MSWA</strong> President, Susanna Panaia.<br />

On Thursday, 24 August the Board of Directors hosted the<br />

annual <strong>MSWA</strong> Dinner Auction at the stunning Fraser’s State<br />

Reception Centre.<br />

This annual event allows us to thank our supporters while<br />

raising much needed funds for Western Australians living<br />

with MS and other neurological conditions. This event is not<br />

possible without the ongoing support of our sponsors and<br />

donors and thanks to their continued efforts we raised a<br />

record breaking $54,000 dollars.<br />

It was a beautiful evening and State Reception Centre,<br />

Kings Park played host to 290 guests including Members,<br />

dignitaries, sponsors and staff. The night included a panel<br />

interview with Marcus, <strong>MSWA</strong> Member Anita Gamba and<br />

<strong>MSWA</strong> Occupational Therapist Ilissa Liew. They gave the<br />

audience an insight into MS and the organisation, and<br />

what it’s like to experience and deal with MS from both<br />

their perspectives.<br />

George Pampacos, <strong>MSWA</strong> President, Amity Travel Centre,<br />

Sandy Chittock, Luke Chittock<br />

Our main auction items had a great response and got the<br />

bidding wars started. To name a few, there was a beautiful<br />

pearl necklace, a holiday for two to Spain, and a private<br />

kick-2-kick with Josh Kennedy including a tour of the Eagles<br />

changerooms.<br />

Another evening highlight was the announcement of the<br />

Commitment Award winners for 20<strong>17</strong> which were Amity<br />

Travel Centre and community fundraiser, Susanna Panaia.<br />

Both work tirelessly throughout the year to raise money and<br />

in-kind support. They are the wonderful people who do not<br />

seek reward and are rarely recognised.<br />

Once again, thank you and congratulations on another<br />

successful night which brought together <strong>MSWA</strong><br />

Members and the Western Australian community.<br />

20 | <strong>MSWA</strong> BULLETIN SPRING 20<strong>17</strong>

<strong>MSWA</strong> VOLUNTEER<br />

UPDATE<br />


Hello and welcome one and all to the <strong>Spring</strong> Edition of the<br />

<strong>MSWA</strong> <strong>Bulletin</strong>. Can you believe it’s nearly time to bring out<br />

the sun hats and put away the umbrellas? Mind you, last<br />

summer we had copious amounts of rain, so who knows<br />

when a brolly is needed.<br />

On the volunteering front, it has been quiet and everyone<br />

seems to be behaving themselves, or so I’m led to believe.<br />

The only movement we have had is within the Wilson Kitchen<br />

with one of our regular volunteers, Priay Rath, hanging up her<br />

apron and starting a new job. We wish her well in all of her<br />

endeavours. I have said this before and I will say it again, we<br />

are very lucky here at <strong>MSWA</strong> to have long term dedicated<br />

volunteers. With such a dedicated team, we have consistency<br />

right across our volunteering program, which is fantastic for<br />

both Members and staff.<br />

I have attended some training over the past few months,<br />

including a fantastic workshop that was facilitated by Peter<br />

Kenyon, Community Enthusiast and Social Entrepreneur. He<br />

was so engaging and made the workshop very lively, friendly,<br />

lots of fun and a great forum for networking. The workshop<br />

was around Retaining, Recruiting and Recognising Volunteers.<br />

Peter’s focus was on community reconnection and volunteer<br />

contribution through story telling.<br />

One of the exercises got people into a group of four to six;<br />

we were then given a big list of skills that are required within<br />

communities. This list had approximately seventy different<br />

skills from baking to administration, photography, meeting<br />

people, changing tyres, answering phones, and the list goes on.<br />

It was amazing to see in my group of four people that we<br />

ourselves, or someone we know, can offer that skill. After<br />

completing the task our group only had 12 skills listed that we<br />

couldn’t do. This was an amazing and enlightening exercise.<br />

I am truly grateful for being connected with both the Swan<br />

Volunteer Resource Centre and Melville Volunteer Resource<br />

Centre, as they make these workshops available and usually<br />

free for Coordinators of Volunteers to attend.<br />

There was an interesting article handed to me by one of<br />

our volunteers that they found in The Weekend Australian.<br />

The article shares the statistics of communities and people<br />

committed to helping others from the 2016 Census. There<br />

are people out in the wider communities who state that as<br />

a society we are becoming more self-centred and losing our<br />

sense of community.<br />

When going over the 2016 Census and comparing it to the<br />

2011 Census, volunteering increased by 2%. This may not<br />

sound like much but across the board it is a significant<br />

increase. Who says volunteering isn’t alive and well? In<br />

Perth 19% of the population are volunteering, including here<br />

at <strong>MSWA</strong>. Well done to you all for committing time to assist<br />

in the wider community and to make a difference to people<br />

in need.<br />

The <strong>MSWA</strong> Dinner Auction was held on Thursday, 24 August<br />

at the State Reception Centre, Kings Park. I volunteered my<br />

time for the evening and what a beautiful venue to hold such a<br />

worthwhile event. The views of the city are absolutely stunning!<br />

It was lovely to see everyone enjoying the evening and the<br />

auctions in full swing. The number of items up for auction was<br />

amazing. The <strong>MSWA</strong> Events team do a fantastic job gathering<br />

donations and the funds raised help make a difference to<br />

those that we serve, and to raise the <strong>MSWA</strong> profile.<br />

Throughout the night a local artist from Fremantle, Shakey<br />

Art by Jacob Butler, created a live painting which was then<br />

auctioned at the end of the evening. If I’m not mistaken it was<br />

a picture of the lighthouse on Pinky Beach, Rottnest Island. It<br />

was fantastic to watch him work and watch his blank canvas<br />

turn into an amazing portrait.<br />

Christmas is again knocking on the door, and we are in<br />

planning mode for our fun filled Christmas Party for Members,<br />

Volunteers and Staff here at <strong>MSWA</strong>. I hope you will all be able<br />

to make it this year and I wonder what my outfit will look like!<br />

Don’t be shy and come dressed up in something colourful,<br />

wacky or weird.<br />

That’s all I have for now and I hope this edition finds you all fit<br />

and well. We are truly blessed to have volunteers within the<br />

organisation and we cannot thank you enough for supporting<br />

the staff and Members, no matter what time is given.<br />

I look forward to catching up with you all at some time. For<br />

new volunteers, welcome, and to our regular and not so new<br />

volunteers, thanks for being part of our family.<br />

Take care and until next time.<br />

<strong>MSWA</strong> BULLETIN SPRING 20<strong>17</strong> | 21



It has been an exciting start for the ‘Embrace the Shake’<br />

ladies this year. We started with our first excursion to Scented<br />

Garden located in South Perth, which gave us an idea to bring<br />

the garden to our Outreach, but we named it ‘Sensory Garden’.<br />

As we all know, we have enthusiastic, talented and creative<br />

ladies in our group, and as usual we always come up with<br />

brilliant ideas. This time we had an opportunity to make a<br />

sign for our little courtyard at Wilson Outreach. We named it<br />

‘The Sanctuary’.<br />

Because of our ‘steady’ hands, we found out playing with<br />

drills and saws was a bit challenging for us, so we nicely<br />

asked our volunteer gardener John to help us with the cutting<br />

and nailing of the boards. It took us three Mondays to finish<br />

this project.<br />

As the weather is slowly getting nicer, I can see that The<br />

Sanctuary is getting more and more popular among our staff<br />

members from the office coming down and having their lunch<br />

here. I am really pleased to see that our little courtyard is not<br />

only being used by our Members in the Outreach. Well, not to<br />

mention, used regularly by Embrace the Shake ladies, for our<br />

favourite morning tea spot!<br />

With spring sprung, we are trying to give more colours to our<br />

courtyard, to make it more presentable and more attractive.<br />

We are in the process of planting colourful petunias, annuals<br />

and perennials.<br />

Whenever you have an opportunity to come to Wilson<br />

Outreach, please do feel free to visit The Sanctuary!<br />



This year marked the 5th Anniversary of the opening of<br />

Treendale Gardens. It has been five very successful and<br />

enjoyable years with many changes along the way.<br />

Over those five years, with some residents moving on or<br />

sadly passing away, we have finally reached full capacity in<br />

our accommodation facility. We are also happy to say that<br />

we have managed to maintain most of the original staff and<br />

employed many new and respected staff members to come<br />

along this journey with us.<br />

On 8 June 20<strong>17</strong> around 70 invited guests, staff, residents<br />

and respite clients as well as Members’ families helped us to<br />

celebrate those five years with a small party in the communal<br />

area of Treendale. This was catered for by our own cook<br />

Belinda, or should I say chef, who put on a beautiful spread of<br />

finger foods and an amazing Croquembouche for the birthday<br />

cake, ably assisted by Zoe.<br />

After an opening welcome by Treendale’s Coordinator Paula<br />

Kennedy all guests had a very enjoyable afternoon mingling<br />

with each other and also managing to consume all of the<br />

beautiful food.<br />

We are looking forward to seeing what the next<br />

five years has in store for us all and hope that everyone<br />

who shared this special day will be able to return for our<br />

next celebration.<br />

22 | <strong>MSWA</strong> BULLETIN SPRING 20<strong>17</strong>




Wow this year has gone fast! We have really tried to connect<br />

with as many Members as possible in the region by taking<br />

our outings on the road, as such. One of our Members from<br />

Denmark suggested that we do a lunch outing there so that<br />

they could attend. So, a small group of Albany Members made<br />

the trip to Denmark and enjoyed a leisurely lunch at the Tavern,<br />

meeting new Members, chatting and having a great catch up.<br />

As this went so well we decided to branch out further and a<br />

few of us made the road trip to Katanning; catching up with<br />

five local Members from there and the surrounding district.<br />

It was great to finally meet some of them and we will be<br />

planning another trip back there.<br />

Albany Outreach has had some interesting weeks including a<br />

Hawaiian themed day with great food, interesting activities,<br />

hosted guest speakers and we had some talks on medications.<br />

We are looking forward to one on cognition and MS and<br />

hopefully a dietitian to round out the year. Suggestions are<br />

always welcome.<br />

We have also had some new games added to our group<br />

stock so come in and check them out as we will do game<br />

days which will be good practice as the annual camp is<br />

coming up in November! We have had a few Members show<br />

interest already.<br />

All the staff have been super busy with Physio classes being<br />

held over a 6-week course and we are hoping to start another<br />

one soon. Anne, our OT has been kept busy with many<br />

inquiries about equipment, home modifications and help in<br />

general as well as the Nursing and Care Support Coordinator<br />

who are also fielding many questions and Massage is busy as<br />

they provide a great service.<br />

Planning for the famous Albany Swim for <strong>MSWA</strong> is already<br />

under way, Saturday, 24 February 2018 is the big day!<br />

I would like to thank everyone – staff, Members and<br />

volunteers for their support and help with the group.<br />

<strong>MSWA</strong> SOUTHSIDE OUTREACH NEWS<br />


Our Friday group seems to get bigger and busier each<br />

week. Our four-hour session is full of activity, laughter,<br />

sharing of mobile phone photos (new grandkids/puppies<br />

etc), some craft and often a quiz or two.<br />

In amongst all the fun and games we manage to fit in time<br />

for physio and massage.<br />

Thanks to Nicola and the other staff and volunteers, the<br />

rooms looked lovely and bright (and yellow) for the recent<br />

Daffodil Day. We do appreciate your efforts!<br />

The news that CEO Marcus is staying on was welcomed by<br />

everyone. We all know he is irreplaceable!<br />

Lively Giselle has left us for Beechboro Outreach – thanks<br />

for all the fun. Thanks also to Rosemary and Sherrill for<br />

providing wonderful lunches each week – your energy<br />

levels seem limitless. Tuesday group’s monthly lunch will<br />

now happen fortnightly so you will be extra busy.<br />

Hurry and get well Jan. We miss you. After all, you’ve been<br />

part of our weekly Outreach for about 20 years!!<br />

Finally, we are hoping our group is a winner in the<br />

up-and-coming <strong>MSWA</strong> Mega Home Lottery. Between us<br />

we have bought eight tickets (syndicates)! Surely one of<br />

them is a BIG winner!<br />

<strong>MSWA</strong> BULLETIN SPRING 20<strong>17</strong> | 23

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Do you want to receive<br />

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on the latest research in the MS community<br />

including new medications, improvements on<br />

existing treatments and studies on symptoms<br />

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Register your email address today to start<br />

receiving our monthly Vitality e-newsletter.<br />

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