MSWA Bulletin Magazine Spring 17_WEB

BULLETIN 

THE OFFICIAL MAGAZINE OF MSWA mswa.org.au 

SPRING 2017 

“While sketching Betty we chatted about everyday things 

over a cup of tea. Her modesty, optimism and faith 

has so inspired me to this day” 

Caroline Marinovich, Artist 

VALE BETTY CUTHBERT AM, MBE 

OCREVUS LATEST MEDICATION 

NDIS UPDATE 

WELCOMING OUR NEW OCCUPATIONAL THERAPISTS

MSWA’S MAGAZINE FOR PEOPLE LIVING WITH MS 

NURSING Our MS nurses are usually the first point of contact after the neurologist’s 

diagnosis of MS. We’re committed to providing holistic supports; providing a greater 

understanding of what to expect. 

Lou Hatter, Manager: 9365 4888 or Community Nurse: 9365 4888 

WILSON CENTRE 

29 Parkhill Way (08) 9365 4888 

Fax (08) 9451 4453 

Freecall 1800 287 367 

See Health Team Dept contacts on this page 

MEMBER SERVICES 

DIRECTORY 

GENERAL MANAGER – MEMBER SERVICES 

Sue Shapland: 9365 4840 

INDIVIDUAL OPTIONS 

Manager Community 

Care Programs 9365 4851 

NDIS TEAM 9365 4824 

OUTREACH GROUPS 

Wilson Outreach (Mon-Thurs): 9365 4830 

Beechboro Lodge (Mon, Fri): 9377 7800 

Southside Outreach (Fri): 9592 9202 

Albany Outreach (Fri): 9841 6657 

BUNBURY (WED) HUB 

1 Mason Street, Davenport 6454 2800 

BUSSELTON OFFICE 

1/21 Cammilleri Street 9754 2320 

MARGARET DOODY RESPITE HOUSE 

Manager, Chris Rush: 9385 9574 

FERN RIVER ACCOMMODATION 

Manager, Danuta Figurska: 9356 2747 

HAMILTON HILL ACCOMMODATION 

Manager, Jayne O’Sullivan: 9331 5780 

TREENDALE GARDENS RESPITE & 

ACCOMMODATION 

50 The Boulevard, Australind 

Manager, Linda Kidd: 9725 9209 

CONTACT US 

If you would like to comment 

on anything you read in this 

Bulletin please email 

bulletin@mswa.org.au 

or write to 

MSWA, Locked Bag 2, 

Bentley DC WA 6983 

The Bulletin can also be viewed at 

mswa.org.au/bulletin 

EDITORIAL COMMITTEE 

Greg Brotherson (Editor), Marcus Stafford (CEO), 

Paul Cavanagh, Sue Shapland, Ros Harman, 

Libby Cassidy, Caitlin Skinner, Sandra Wallace, 

Narelle Taylor, Leonie Wellington, 

Sarah Lorrimar, and Dawn Burke. 

The Editor welcomes unsolicited submissions. 

All articles are subject to a reviewing process. 

The views expressed are those of the Authors 

and do not necessarily reflect the view of the 

Society’s staff, advisors, Directors or officers. 

PHYSIOTHERAPY Our team aims to provide treatment interventions to develop and 

maintain mobility and function. Our Physiotherapists are experts in movement and function, 

and work in partnership with you to attain the highest possible level of independence. 

Dave Hathorn, Manager: 9365 4837 or Physiotherapy Department: 9365 4834 

OCCUPATIONAL THERAPY Occupational Therapists enable Members, and Clients, 

to continue their work and other interests for as long as possible through advice, aids 

and equipment. 

Rosemarie Dravnieks, Manager: 9365 4804 or OT Department: 9365 4888 

SPEECH PATHOLOGY Our Speech Pathologists provide support by assessing, 

diagnosing and creating individualised treatment programs for Members who experience 

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

strategies to promote better communication and safe swallowing. 

Jamaica Grantis, Manager: 6454 3140 

COUNSELLING, PEER SUPPORT & HEALTH EDUCATION 

Talking with a Counsellor creates a safe, respectful and confidential environment for you 

and those close to you to explore options, create change or gain understanding about your 

life. Attending counselling with our tertiary qualified practitioners enables opportunity 

for personal growth and exploration in a non-judgemental environment. We have a Peer 

Support & Health Education Coordinator who organises peer connection & events and 

supports health and wellness education services. She can be contacted on 9365 4858. 

To make an appointment please call: 

Lisa Papas, Manager: 9365 4836 or Main Counselling line: 9365 4811 

SOCIAL WELFARE Social Welfare Officers assist people living with MS and their 

families to access services and supports to remain living independently at home. 

They specialise in case management, advocacy and sourcing funding options. 

They provide information on benefits and entitlements through Centrelink and other 

government departments. Monitor NDIS/WANDIS Services. 

Irene Gallagher, Manager, Social Work: 9365 4835 

INDIVIDUAL OPTIONS We provide long-term and time limited in-home supports 

including assistance with personal care for people with MS, to help them remain in their 

homes. Care and supports are provided through a combination of funding from the 

Disability Services, Department of Communities and our own fundraising efforts. 

We manage both DSC and NDIS individually funded care packages. 

Contact Aileen Ward, Manager on 9365 4851 for more information. 

THE NDIS TEAM We can help answer all NDIS questions. 

Our experienced team can help determine whether you may be eligible for NDIS support 

and assist you with your application. This includes developing an individual plan that 

best suits your needs. We support people with all neurological conditions including 

MS, Stroke, Parkinson’s Disease, Huntington’s Disease, acquired Brain Injury and 

Motor Neurone Disease, to name a few 

Contact Mark Douglas, NDIS Operations Manager: 9365 4824 

CAMPS & RECREATION MSWA provides separate recreation camps for Members, 

carers, and families, primarily funded by Lotterywest, and for a nominal cost to participants. 

These camps provide a break from daily routines, and strengthen friendships and 

support networks. 

Coordinator for Camps & Recreation: 9365 4843 

2 | MSWA BULLETIN SPRING 2017

Letter from the MSWA President 

GEORGE PAMPACOS 

I was recently delighted to announce that our CEO, Marcus 

Stafford, will be staying on at MSWA. 

After an initial recruitment process to appoint a new CEO 

after Marcus’s resignation in June, we have found the task 

of finding a new CEO, with the right skills, background and 

attributes more difficult than perhaps anticipated. 

There has been a lot of work done by Marcus, the Board and 

the leadership team to develop our ambitious strategic plan 

and Marcus is invested in this work. After some discussions, 

Marcus made the decision to remain in his position at the 

helm and continue as CEO. 

From the conversations I have had with several of you, I know 

you will be as pleased as I am about this news. 

Regards, 

George Pampacos 

MSWA President 

Inside | Spring 2017 

Letter from the MSWA President 3 

From the desk of the CEO 4 

Letter from the Editor 5 

Vale Betty Cuthbert AM, MBE (1938 – 2017) 6 

A message from the General Manager 

– Member Services 7 

Round-up of research and other items of interest 8-9 

MSWA Funding Research Projects for MS 

and other neurological conditions 10 

OCREVUS (ocrelizumab) Latest medication 

added to PBS listing 11 

Discover our new MSWA resources! 12 

Welcoming our new Occupational Therapists 13 

Walking Aids: The Good, the Bad, and the Wobbly 14 

Counselling & Coffee – what’s the difference? 15 

NDIS Update 16 

Your Superannuation Insurance benefits 

– know your rights 17 

MSWA Maurice Blackburn Employment Forum 17 

The Reformation 18 

That’s Life with Narelle 19 

Annual MSWA Dinner Auction 20 

MSWA Volunteer Update 21 

The Sanctuary 22 

Fifth anniversary of Treendale Gardens 22 

News from the Great Southern 

Outreach Group (Albany) 23 

MSWA Southside Outreach News 23 

MSWA BULLETIN SPRING 2017 | 3

From the desk of the CEO 

MARCUS STAFFORD 

To quote the Bard! “Parting is such sweet sorrow”. So why 

experience that sorrow if it doesn’t make perfect sense?! The 

combination of the difficulty in finding my successor, paired 

with my commitment to the brilliant journey ahead, made the 

decision to stay on as MSWA’s CEO a delightfully easy one. 

As we work through the current strategic plan with discipline 

and passion and start to build our next one, I am truly excited 

about our future. An excitement that is translating into more 

work for the organisation’s managers and staff! Poor things. 

They might end up wishing that I’d gone away, after all! 

We are already into a new financial year and have so much to 

be proud of as we wrap up 2016-2017. 

The stand out success for this year was our record breaking 

contribution of $2.6 million to neurological research which is the 

largest in Australia’s history. Apart from the regular and ongoing 

support of a myriad of MS research projects, this includes: 

• $500,000 to the international research programme into 

progressive multiple sclerosis (MS); 

• $500,000 to WA research projects; and 

• $350,000 for research into other neurological conditions. 

On top of this, our care service hours increased by 8% for a 

total of 683,758 hours and our Annual Survey scores very 

highly, indicating that our Members are very satisfied with the 

care they receive. 

We have also been able to mark some big milestones in 

expanding our footprint. Earlier this month, we officially 

opened our brand new $1.5 million Community and Health 

Services Centre in Bunbury. I’m so pleased to have personally 

seen it open after all the hard work that’s gone into the 

Centre. My congratulations to all involved in bringing this 

award-winning facility to fruition. People with MS and other 

neurological conditions, living in Bunbury and the South- 

West, are now able to access a full range of services and 

support in these custom designed premises. 

At time of writing, there is no news on the State Government’s 

decision regarding the NDIS (National Disability Insurance 

Scheme) model. The signals continue to be mixed and with 

the passing of time, the roll out remains as per the signed bilaterals. 

My expectation is that the final model will probably 

have a Federal flavour, but retain a sensible degree of local 

autonomy. Words like ‘hybrid’ come to mind, although the 

devil will not only be in the detail, but also the ongoing tweaks 

and changes as the Scheme unfolds. Irrespective of the final 

nature of the model, MSWA will make it work! 

Meanwhile, within the organisation, business continues 

as usual, with the overarching philosophy of challenging 

everything that we do as we strive to get better and better. 

As we continue to grow services, build our footprint and fund 

research, we need our brand marketing and sales teams to 

help finance those lofty ambitions. And they are! On the very 

same week that I renewed my commitment to MSWA, the 

Annual Dinner and Auction delivered a fantastic result in what 

attendees described as the best one yet. Also, in the face 

of new competition, our Mega Home Lottery sold out. Our 

new General Manager of Brand, Marketing and Sales, Paul 

Cavanagh has just joined the team. He is a fantastic acquisition 

for us, bringing a fresh perspective and determination to build 

on the outstanding results already delivered. I congratulate 

Paul on joining the best organisation in Western Australia, if 

not Australia, if not the world. But perhaps I am a little biased, 

borne by my decision to stay! 

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

with plans to build a hub for services and accommodation, and 

we are now finalising plans for its development. Stay tuned. 

I look forward to the privilege of writing many more 

Bulletin articles as we continue our journey to help folk 

with MS and other neurological conditions. 

Do you want to receive the Bulletin online? 

Want monthly information updates? 

Register your email address today to start receiving our 

monthly Vitality e-newsletter and the Bulletin magazine online. 

Just email damien.hill@mswa.org.au or call 9365 4814 

and let us know your current email address. 


Letter from the Editor 

DR GREG BROTHERSON 

Welcome everyone to the spring edition of your Bulletin. 

We have more to celebrate this month than just the turning 

of the season as the decay of winter gives way to a time of 

renewal in spring. In the spirit of regeneration, we also have 

the celebration of Marcus withdrawing his resignation. This 

news became public when announced at the MSWA Dinner 

Auction on 24 August, and was met with a resounding ovation 

by everyone, punctuated with squeals of delight. On behalf of 

all people with multiple sclerosis, thank you Marcus. 

General Manager Member Services Sue Shapland succinctly 

sums up this moment in her article when saying that it “was 

really welcomed by Members and staff alike. With so many 

exciting plans for the next three or more years his leadership 

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

Let me add that as a person who confessed in the previous 

edition of the Bulletin as being absolutely ‘drained’ by the 

news of his resignation, like many others who felt the same, 

we are now rejuvenated and more than delighted that Marcus 

has decided to remain as CEO. 

We also bring you the sad news from inside MSWA, of a great 

loss with the passing of Betty Cuthbert. I have lost count of 

how many times I have been asked how it is possible that 

the fastest woman in the world over all sprint distances was 

struck down with multiple sclerosis. The short answer was, 

and still is, nobody knows. It is also a question couched in 

scientific terms being asked by researchers funded by MS 

Research Australia, to which MSWA is a major contributor of 

research funding – $2.6 million this year. 

Is it a problem in the myelin producing cells themselves that 

causes them to begin dying? This could then trigger the 

immune and support cells in the brain to respond to clean 

up the damage and that in turn triggers a bigger immune 

response. Or is it a flaw in the immune system (which some 

of the genetic studies suggest) that allows the immune 

cells to become ‘trigger happy’ and set off an inflammatory 

response in the brain with minimal or no provocation? The 

mystery continues. But what is certain is that the work done 

by Dr Parratt and Professor Prineas helps us to rule out some 

possibilities and allows us to keep moving down other lines 

of investigation to bring us closer to solving the mystery (MS 

Wire, August 2017). 

The mystery therefore remains, and it is this tormenting illness 

that adds to the mystique which surrounds Betty Cuthbert and 

moves so many people to sing her praise. Bruce McAvney said 

in The West, “Betty is still the only Australian non-swimmer 

to win three gold medals at one Olympic Games and that’s 

an incredible feat.” A much-admired champion confined to a 

wheelchair, robbed of her speech and vision, Sue Shapland 

says ‘Goodbye’ to Betty on behalf of the Members and staff 

of MSWA. Vale Betty Cuthbert. 

All of this is true, but to my mind what also sets Betty apart 

from other Olympic champions is her battle with an evil 

disease, and in that regard Betty is no different to the rest 

of us who have been diagnosed with this illness. We must 

therefore never forget that incredible feats of endurance are 

also a daily occurrence performed with dignity by every person 

with multiple sclerosis, which includes every carer who rides 

the emotional rollercoaster alongside his or her loved one, a 

mystery journey caused by this nasty piece of work. 

Elsewhere in this edition, you will find the latest roundup 

of Research articles including the long-awaited release 

of OCREVUS (ocrelizumab), the latest medication added 

to the PBS listing. A lot of hope is pinned to this diseasemodifying 

drug which promises some relief for people with 

the progressive type of the disease. That prospect we shall 

just have to wait and see. 

Nigel Carey updates you on the NDIS; Maurice Blackburn, 

lawyers, discusses superannuation and employment. Rob Orr, 

Counsellor, tells us what the difference is between counselling 

and having coffee with a friend. 

We have the effervescent Dawn Burke contribution on 

volunteering, and our regular input from Ros Harman 

and Narelle Taylor. Finally, we have news from Treendale 

Gardens which celebrated its fifth birthday, and Albany 

brings us their latest Outreach news. 


Vale Betty Cuthbert AM, MBE 

(1938 – 2017) 

SUE SHAPLAND RN, BN 

Sadly, Olympian Betty Cuthbert, and MSWA Member, passed 

away in August aged 79. I was honoured to attend the funeral 

service held in Mandurah, on behalf of MSWA. 

To hear of her humble beginnings, her natural talent, dedication 

and hard work and her amazing achievements was really 

something special. Everyone who spoke of Betty, and most 

people who met her over the years, would agree she was a 

genuinely kind and gentle person who felt uncomfortable in 

the spotlight. 

Betty was an inspirational Olympian who set many records 

on the track; winning four gold medals in three distance 

events, the 100 metres, 200 metres and 4 x 100 metre relay 

events, in Olympics including Melbourne in 1956 and Rome in 

1960. She was the first Australian to win triple gold and was 

affectionately dubbed Australia’s ‘Golden Girl’. 

Betty started experiencing the first symptoms of MS in 

1969 but wasn’t diagnosed until 1974. She then became an 

advocate for people with MS and used her profile to raise 

awareness and much needed funds for MS research. She 

jointly launched MS Research Australia in 2004 with the 

former PM, John Howard AC at Parliament House. 

Two Research grants have been created in her name; the 

Betty Cuthbert Scholarship and the Betty Cuthbert Fellowship. 

These awards are jointly funded by the National Health and 

Medical Research Council (NHMRC), MS Research Australia 

and the Trish MS Research Foundation to assist research 

into the causes of MS and speed up the development of new 

treatments and therapies to reduce the effects of the disease. 

Betty also supported MSWA and MS Australia by appearing at 

events and donating items for auction. 

Betty was an all-round genuine champion and will be 

sadly missed by her family and those who had the privilege 

to meet her. 

MSWA would like to extend our sincere sympathy to her 

family and friends and in particular to Rhonda Gillam her 

dear friend and carer for many years. Rhonda travelled 

with Betty to many sporting and MS related events. 

References; Athletics Australia and MSRA. 


A message from the General Manager – 

Member Services 


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

the ability to learn new things and move forward with your life.” 

Dr. David M. Burns. 

I thought this quote has many applications. Too often we 

strive for perfection and are critical of ourselves or others if 

things are less than perfect rather than celebrating success 

or achievement. I absolutely believe we are never too old to 

learn new things; in fact, research encourages us to do so to 

stave off the impact of ageing! 

This could also apply to the National Disability Insurance 

Scheme (NDIS). This massive social reform requires a huge 

commitment over the next 3-4 years to register approximately 

460,000 eligible Australians with the Scheme. While this is 

occurring, the funding is essential to those who have been 

registered thus far and renewing their plans annually. All the 

while the NDIS is evolving and no doubt this will continue 

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

the difference it is making for people living with disability is 

heartwarming. Of course, here in WA we are still awaiting the 

decision of which version we will be adopting, but thankfully 

this isn’t delaying the roll out of new sites. 

We recently had some great news for MSWA - Marcus our 

CEO is staying on! This was really welcomed by Members 

and staff alike. With so many exciting plans for the next 3 or 

more years, his leadership will be a real asset, as it has been 

for the past 15 years. 

The official opening of our Bunbury Hub took place in August, 

allowing us to proudly show off this fantastic facility. I would 

like to acknowledge grants received from The John and Beryl 

May Henderson Foundation and Lotterywest, which assisted 

with costs relating to the installation of the air conditioning 

and furniture fit out. 

The plans for our proposed Butler premises have been finalised 

and will soon go out to tender. I think each time we build, we 

improve on the design and layout and I am really looking 

forward to seeing this development take shape. We already 

have a list of potential residents for the accommodation facility. 

Time flies as we keep saying, but this year we see some 

milestones which bring that home. Fern River will be 20 in 

December, Beechboro is 14 and Treendale has been open for 

five years! 

An exciting announcement regarding the MSWA research 

funding for 2017/18: we have committed $2.6 million, another 

record amount. This latest funding allocation also includes 

a four-year commitment to support two exciting research 

positions in WA. The Perron Institute for Neurological and 

Translational Science, previously WANRI, will establish two 

roles, an MSWA Professor of MS and an MSWA Professor of 

Neuroplasticity which will benefit MS and other neurological 

conditions. $500,000 will be committed to research into 

progressive MS, through MS Research Alliance and the 

International Progressive MS Alliance. 

We recently had confirmation that another treatment has 

received PBS approval for relapsing remitting MS. Ocreluzimab 

is an infusion which has also shown some promise for 

progressive MS and we hope this will also be approved. 

When I started at MSWA in 2003 there were just four disease 

modifying therapies available for MS and they were new to 

the scene and the long-term benefits were unsure. We now 

have 12, giving greater choice and the opportunity to change 

therapies when needed to better manage disease activity, 

and long-term benefits are well documented. 

If you need any information about MS, managing your 

symptoms, or the latest therapies or research please 

contact one of our MS nurses through our main number, 

9365 4888 or email us at Get-in-touch@mswa.org.au. 

Our Member Services Team is here to support you. 


ROUND-UP OF RESEARCH 

AND OTHER ITEMS OF INTEREST 


From the UK MS Trust site: 

www.mstrust.org.uk/research/research-updates 

MS research update – How does 

staying in hospital affect your MS? 

Canadian researchers reviewed 

details of hospital stays for 2,100 

people with MS, over a 5-year 

period. 23% had been in hospital at 

least once and 7% more than once. 

It was found that following hospital 

stays there was a sharp increase in EDSS and on average 

that was equivalent to 2.5 years of progression. The increase 

in disability was greater for unplanned, emergency stays 

compared to planned stays, for admission to the intensive care 

unit, for hospital stays not related to MS and for longer rather 

than shorter lengths of stay. 

The results indicated that a sudden illness requiring a stay in 

hospital leads to an increase in disability. Many of the reasons 

for admission – bladder problems like urinary tract infections, 

bowel problems like constipation and respiratory problems – 

could be prevented with proactive care. 

Can we predict benign multiple sclerosis? Results of a 20- 

year long-term follow-up study. Sartori et al. Journal of 

Neurology 2017; 264:1068-1075. 

Canadian researchers wanted to see whether people 

considered to have benign MS (ie very mild relapses and low 

levels of disability some years after diagnosis) would still meet 

the definition after 10 years. They were also interested to know 

if it was possible to predict those people who were destined to 

have a benign course of MS as this would help identify people 

who might not need to take one of the disease modifying drugs. 

175 people, from 5000 on the Ottawa MS clinic database, 

were identified as having an EDSS 3 or less 10 years after 

diagnosis; of these 63% remained benign at 20 years. 

The researchers commented that since none of the early 

clinical indicators could predict future course, they concluded 

that benign MS can only be used to describe someone’s 

experience of MS. The researchers did recognise there were 

several problems with the methods they used. 

They considered delaying disease modifying drugs (DMDs) in 

the hope of someone having and maintaining a benign status 

is risky, particularly as once it is clear that someone is no 

longer benign, they may have progressed to the point where 

DMDs are no longer effective. 

Tracking daily fatigue fluctuations in multiple sclerosis: 

ecological momentary assessment provides unique insights. 

Powell DJH, et al Journal of Behavioural Medicine 2017 

Mar 9. [Epub ahead of print] 

Fatigue is one of the most common MS symptoms but the 

causes are not well understood. A wide range of factors 

contribute to fatigue, including low mood and stress at work 

or in personal relationships. The combination of contributing 

factors means that fatigue levels can vary from day to day and 

within a day, making it particularly hard to cope with. 

This UK study believed to be a first of its kind, sought to get 

a better picture of how fatigue levels vary from moment-tomoment 

and day-to-day whilst capturing details of people’s 

mood and their stress levels and recent physical activity. 

76 participants – 38 with RRMS and 38 without MS – recorded 

fatigue levels over 4 week days, together with details of their 

mood, exposure to stress and what they were doing at six 

time points during the day. At the start of the day, they were 

asked to rate the quality of the previous night’s sleep and in 

the evening, to score their overall fatigue level for the day. 

There were substantial moment-to-moment and day-to-day 

fluctuations in fatigue in people with RRMS. On average, their 

fatigue levels started higher and remained higher throughout 

the day, increasing more rapidly in the earlier part of the day, 

peaking in late afternoon then leveling off in the evening. 

In both groups, greater exposure to stress and low mood 

were associated with higher fatigue levels, positive mood 

with lower fatigue levels. Increased fatigue was associated 

with recent physical activity in people with MS but not in 

those without MS. Surprisingly, a poor night’s sleep did not 

affect the next day’s fatigue levels in people with MS but did 

increase fatigue levels in people without MS. 

Findings: This research highlights the individual variation in 

fatigue experienced by people with MS and reinforces the 

need for personalised approaches for effective management. 

Future studies of MS fatigue could explore ways to improve 

positive mood and respond to stress arising from personal 

relationships and the work environment. Ways to manage 

peak fatigue in the afternoon and after physical activity could 

also be explored. 


Read more at: 

mswa.org.au/researchupdate 

From MS Research Australia: 

New research highlights the benefits of clinical trials 

Most people don’t think about the 

process which leads to us being able to 

buy our medications, nor do we think 

about how health care professionals 

make their treatment decisions. There 

is a long and complicated process to 

ensure that treatments are safe and 

effective, and the culmination of this 

process is clinical trials. 

Clinical trials are one of the key ways treatments are 

constantly improving; they test new treatments or compare 

treatments. Findings can lead to new treatment options, or 

highlight which treatment can bring about the best outcomes. 

MS Research Australia’s Clinical Trial Network, is a member 

of the Australian Clinical Trials Alliance (ACTA), which 

recently released a report quantifying the benefits of clinical 

trials for Australians. 

Their study assessed 25 different clinical trials, and the 

impact those trials had in Australia. They assessed a few 

outcomes, including the improved health of people on the 

trials and ongoing savings to the health system. They also 

took into consideration the cost of the clinical trials and cost 

of running the clinical trial networks that carried out the trials. 

The report found that the trials improved the health of 

participants and reduced health service costs, by up to $2 

billion AUD. 30% of this saving related to a reduction in health 

service costs – that is, because of better treatment, people in 

the trials were not so reliant on the health care system. 

They also found that for every $1 invested into the clinical trial 

networks that carried out the trials there was $5.80 return. 

These findings highlight the importance of clinical trials in 

enhancing the health care of people as well as the economic 

benefit of clinical trials networks. 

Participating in trials is a great way in which you can help 

accelerate the treatment options for people with MS, as well 

as potentially improving your own health care. On the MSRA 

website they list the trials currently under way in Australia and 

New Zealand, and information on how to become involved. 

These trials range from trial medications, to surveys about the 

psychological or other social impacts of MS and ways to prevent 

falls through new improved physical training methods. Some 

are simple surveys whereas others are more involved. If you are 

interested in participating in a study go to www.mstrials.org.au. 

From the Barts MS Blog: 

www.multiple-sclerosis-research.blogspot.com/ 

A bygone era: AZA, MTX, CYC increase cancer risk in MS; 

Posted: 21 Aug 2017 04:00 PM PDT 

BMC Neurol. 2017 Aug 8;17(1):155. doi: 10.1186/s12883- 

017-0932-0. 

Association between multiple sclerosis, cancer risk, and 

immunosuppressant treatment: a cohort study. Ragonese P, 

Aridon P, et al. 

The association between MS and cancer has been 

investigated over the years with conflicting results. Several 

reports suggest an increased cancer risk among MS patients 

treated with immunosuppressant (IS) drugs. 

An Italian study reviewed 531 MS patients, who had 

previously used immunosuppressant therapies. The study 

showed a higher cancer risk in MS patients associated 

only to those with previous IS exposure. These include the 

older immunosuppressant drugs including azathioprine, 

mitoxantrone (MTX) and cyclophosphamide (CYC). 

The researchers commented that studies on long-term 

outcomes are essential to evaluate the possibility that 

treatment options that need to be considered for a long time 

period may modify risk for life threatening diseases. 

Minocycline as a neuroprotectant? 

Trial of Minocycline in a Clinically Isolated Syndrome of 

Multiple Sclerosis. Luanne M. Metz, M.D., David K.B. Li, M.D., 

Anthony L. Traboulsee, M.D.; et al. 

Based on encouraging preliminary results, the authors 

conducted a randomized, controlled trial to determine whether 

minocycline reduces the risk of conversion from a first 

demyelinating event (CIS; clinically isolated syndrome) to MS. 

142 patients were randomised at 12 Canadian MS clinics; 72 

received the drug and 72 placebo. 

Conclusion: The risk of conversion from a clinically isolated 

syndrome to MS was significantly lower with minocycline 

than with placebo over 6 months but not over 24 months. 

It was noted that there were more reported adverse events 

and side effects in the treated group and the study was small; 

however, it was of interest and no doubt more trials will be 

conducted. 


MSWA FUNDING RESEARCH 

PROJECTS FOR MS AND OTHER 

NEUROLOGICAL CONDITIONS. 

SUE SHAPLAND RN, BN, GENERAL MANAGER, MEMBER SERVICES 

As many of you would know, MSWA has a long and proud 

history of supporting MS research efforts in Australia. Over 

the years we have increased our contributions steadily 

and over the past three years this has amounted to over 

$2 million annually. 

These funds have been allocated to MSRA who then assess 

the applications for funding they receive and allocate 

the dollars accordingly. We have supported a number of 

significant projects over the years including PREVANZ, the 

Stem Cell registry, the Australian MS Longitudinal Study, the 

PhoCIS study and the international Progressive MS Alliance. 

MSWA continues to contribute significant funds to MS 

Research Alliance to support MS research efforts into the 

cause, better treatments and ultimately a cure. We have again 

requested that $500,000 be allocated to the Progressive 

MS Alliance. 

Here in WA we allocated three Post-Doctoral Research 

Fellowships funding for two years: supporting their important 

work evaluating light therapy as a potential preventative 

treatment option for people who have had a single episode 

of MS; evaluation of outcomes for a series of patients who 

received stem cell therapy; review of MS cases to try and 

identify predictors of disease progression and exploring the 

potential links of diet with causation of MS and potential 

benefit as part of lifestyle modification after diagnosis. 

We have also funded local research projects into effectiveness 

of self-management fatigue programs, cognitive rehabilitation 

therapy and balance rehabilitation interventions including the 

use of non-invasive brain stimulation as an additional therapy. 

This financial year we are proud to announce additional 

funding has been allocated for both MS research here in WA 

as well as nationally and internationally, and for research 

benefitting people living with other neurological conditions. 

Two new exciting positions will be funded, annually for four 

years, through the Perron Institute for Neurological and 

Translational Science in Nedlands (previously WANRI). One 

position will become the MSWA Professor for MS Research 

and the other the MSWA Professor for Neuroplasticity. These 

positions will drive research projects that we anticipate will 

add significant value in these fields. Neuroplasticity research 

seeks to develop therapies and interventions that encourage 

new pathways to overcome areas of damage and improve 

function. This research will be applicable across a range 

of neurological conditions including stroke, brain injury and 

multiple sclerosis. 

In addition to this funding we are proud to announce 

additional funding has been allocated to The Perron Institute 

for their stroke research arm. This will provide support for 

renowned local researcher Professor Bruce Meloni who has 

been studying neuroprotection for many years. He will now be 

progressing his research into identifying potential therapies 

to maximise protection and reduce damage in stroke, head 

injury and other related conditions. 

MSWA is proud to announce these exciting developments 

and we look forward to continuing our great partnership 

with the Perron Institute and providing our Members and the 

community progress updates as we receive them. 

I would like to acknowledge the great vision and 

leadership shown by our CEO Marcus Stafford, and 

our Board which has allowed us to identify beneficial 

research projects and fund them. 

Want to access research articles? 

Here are the places you can access up to date research 

articles relating to multiple sclerosis: 

• Vitality – Our monthly research focussed e-newsletter 

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

• Right here as part of your Member magazine Bulletin. 

It includes great research articles and information every quarter. 

Just email communications@mswa.org.au if you would like any further information. 


OCREVUS (OCRELIZUMAB) 

LATEST MEDICATION 

ADDED TO PBS LISTING 

In July 2017 Ocrelizumab (OCREVUS) was approved by the 

Australian Therapeutic Goods Administration (TGA) for the 

treatment of relapsing forms of multiple sclerosis and primary 

progressive multiple sclerosis (MS). It is hoped that the drug 

will be available for PBS use as early as October this year for 

relapsing forms of MS, and available for use in progressive 

MS in the near future. 

Ocrevus is a humanised monoclonal antibody designed to 

target CD20-positive B cells, a specific type of immune cell 

thought to be a key contributor to myelin (nerve cell insulation 

and support) and axonal (nerve cell) damage. This nerve 

cell damage can lead to disability in people with MS. Based 

on preclinical studies, Ocrevus binds to CD20 cell surface 

proteins expressed on certain B cells, but not on stem cells 

or plasma cells, and therefore important functions of the 

immune system may be preserved. 

Ocrevus is administered by intravenous infusion every six 

months. The initial dose is given as two 300 mg infusions 

two weeks apart. Subsequent doses are then given as single 

600 mg infusions, 6 monthly. 

As with all MS medications, the efficacy, side-effect profiles 

and tolerability of a drug can vary greatly between individuals, 

and it is for this reason that a range of affordable treatment 

options is necessary to increase the chance of every individual 

finding an effective and well tolerated treatment that suits 

their individual circumstances. 

With a different mechanism of action, different method 

and timing of delivery, Ocrevus has been shown to be 

largely well tolerated by people with MS. It has shown a 

high level of efficacy in comparison to first-generation 

MS treatments with, importantly, a relatively good safety 

profile. Serious infections occurred in 1.3% of people 

receiving Ocrevus treatment, and neoplasms occurred 

in 0.5%. The most common side effect, infusion-related 

reactions, occurred in 34.3% of people being treated 

with Ocrevus. 

For more information speak with your neurologist, an 

MSWA MS nurse, or read the UK MS Trust website – 

search the A-Z Fact sheets. 

NEW STUDY 

All Hands-on Deck: 

Two different training programs to reduce fatigue and improve 

strength, dexterity and support activities of daily living in 

adults with Multiple Sclerosis. 

WE NEED YOU! 

Seeking adults with MS who are willing to gain the upper 

hand by participating in a 4-week home-based study. 

Aim of the study: 

We want to look at the impact of two separate home-based 

training programs, (1) fine motor training OR (2) strength and 

yoga training to see how they affect fatigue, and activities of 

daily living (ADLs). 

What the study involves: 

Participants will either be randomly allocated to the Fine 

Motor group, or the Strength/Yoga group and both programs 

will be completed at home. Each training program will run 

for a total of four weeks, and will be completed four days per 

week, with each session taking approximately 30 minutes. 

Requirements to be involved: 

1. Attain medical clearance from your GP/Neurologist. 

2. Attend an orientation session (to be held at MSWA, Wilson) 

so we can show you the basic exercises. 

Eligibility: 

Male and female adults (over 18) no ongoing relapse, upper 

extremity dysfunction due to muscle weakness related to 

their MS, ability to use test materials with capable cognitive 

function, and have not previously engaged in an upper limb 

exercise program. 

Contact Details: 

Lead Researcher: Lauren Jones 

Email: 

lauren.jones2@my.nd.edu.au 


DISCOVER OUR NEW 

MSWA RESOURCES! 

SARAH LORRIMAR, HEALTH EDUCATION AND PEER SUPPORT COORDINATOR 

Over the past year, MSWA staff have been working together 

to create and develop new educational material for our 

Members. We have collaborated with external professionals, 

such as nutritionists from Curtin University, to ensure we have 

the best information that is both relevant and up to date. 

Our resources cover information on a variety of topics to help 

you live well with MS. In fact, many of the information cards 

cover material on general wellbeing and can be shared with 

your friends and family! 

Some of our new resources include: 

• Cognition – Information and Workbook 

• Nutritional Guidelines in Multiple Sclerosis – Edition Three 

• Healthy Sleep 

• Thinking and Memory 

• Keeping Your Brain Healthy 

Stay tuned as we work on a new and engaging format 

for our educational material. If you would like further 

information or would like a copy of any of the above, 

please contact our Health Education and Peer Support 

Coordinator, Sarah Lorrimar on 9365 4858 or email 

Sarah.Lorrimar@mswa.org.au 

Un baguette. 

S’il vous plait, mate. 

Fold, Pack, Travel 

1300 622 633 www.scootersAus.com.au 

WH20495/Intouch 

WH20495 ScootersAust_Intouch-90Hx210mmW.indd 1 

1/2/17 12:42 pm 


WELCOMING OUR NEW 

OCCUPATIONAL THERAPISTS 

IAN CHEOK 

MSWA OCCUPATIONAL THERAPY MANAGER 

Hi, my name is Ian. I completed my occupational therapy 

training at Curtin University, receiving the Head of the School 

Award and Outstanding Mentor Award. Prior to taking up 

OT, I was a computer science graduate from the University 

of Western Australia and worked in the areas of technology 

usability and human-computer interaction for 15+ years. 

This experience has enhanced my skill set. 

I strongly believe that when people can participate in 

activities they truly enjoy, their health and wellbeing will be 

greatly improved. I thrive on helping others express the best 

version of themselves by honouring their unique personality 

and working around their strengths. 

Before joining MSWA, I was the principal OT at Burswood 

Health, an interdisciplinary pain management clinic, focussing 

on chronic pain rehabilitation and soft tissue therapy. I also 

worked with VisAbility (formerly the WA Association for 

the Blind), where I focused on designing smart assistive 

technology and low vision rehabilitation programmes for 

clients with vision impairment and acquired brain injury. 

In my free time, I enjoy hiking, yoga and spending time with 

people who like to laugh out loud. 

VERITY DE FRIES 

MSWA OCCUPATIONAL THERAPIST 

My name is Verity, and I am an MSWA Occupational Therapist 

based at Wilson. I may look familiar, as I previously worked 

at MSWA for three years before leaving to try something new. 

For the last two years I have worked at TADWA, with a focus 

on assessing for aids and equipment and home modifications 

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

In the past, I worked in residential aged care and transitional 

care facilities. I am very happy to be back at MSWA – it is 

wonderful to see so many familiar faces, as well as meet 

plenty of new ones! 

The thing I enjoy the most about my work is being able 

to support people to remain as safe and independent 

as possible. I love that every individual is different, having 

unique challenges to overcome and goals to meet; it keeps 

my job interesting and means that I am always learning 

something new. 

When I’m not at work I can usually be found at the gym, 

baking up a storm in the kitchen, or spending time with my 

puppy and family. 


WALKING AIDS: THE GOOD, 

THE BAD, AND THE WOBBLY 

BEN MATHEWS, MSWA PHYSIOTHERAPIST 

Would you buy a suit without trying it on first? Or buy a car 

without sitting in it or even looking under the bonnet? I hope 

you answered no. If you answered yes, I have some clothes 

and a car for sale. 

It never fails to surprise me how many people buy walking 

aids (sticks, crutches, walkers) without researching whether 

they are the correct aid for their level of function, or if they are 

even the correct size! 

Furthermore, most people go years without ever checking or 

servicing their walking aid. I have seen people using walking 

sticks that have completely worn through the rubber foot 

(ferrule), and are walking on the slippery metal post beneath. 

I have seen others using walking frames whose brakes don’t 

work, and even using aids that are broken! 

When I was working in an aged-care facility I even met one 

unfortunate fellow whose family had bought him a paediatric 

4 Wheeled Walker and couldn’t work out why he kept falling 

when he was walking with it. 

I am regularly adjusting aids, replacing ferrules, handles, 

tightening brakes etc. It is concerning how few people realise 

there is a problem with their aid. 

An improper aid is unsafe, and it goes without saying that this 

can increase your risk of falling. Some lesser known problems 

associated with using the wrong aid are: 

• shoulder, neck, back, and arm pain (such as tennis elbow, 

carpal tunnel syndrome, thoracic outlet syndrome) 

• abnormal gait patterns (that can cause muscle imbalances, 

and in some cases damage knee and ankle joints). 

Before purchasing a walking aid, we strongly recommend you 

have an assessment with one of our physiotherapists. 

During the assessment, we will test your balance, strength, 

and your gait pattern, to determine which aid is most suited 

to you and your lifestyle. 

Not only that, but we stock replacement ferrules and have 

several types of sticks and crutches that we sell at wholesale 

price (we make no profit off these, you pay the same price as 

we paid for them) and in some cases, we may be able to apply 

for funding through certain organisations to cover part or all 

of the cost of a new walking aid. 

Also, if you happen to find a fancy new walking aid that 

glows in the dark, has yellow speed stripes and is made from 

aerospace materials, please let us know about it. We may be 

able to buy the aid at the wholesale price as a not-for-profit 

organisation. 

For more information on how to select an appropriate 

walking aid or if you have any questions, please contact 

the MSWA Physiotherapy department 9365 4888. 


COUNSELLING & COFFEE – 

WHAT’S THE DIFFERENCE? 

ROB ORR, MSWA COUNSELLOR 

It’s commonly accepted wisdom that if you are experiencing 

some life difficulty and/or emotional distress, talking about 

it to someone can be helpful. We believe in expressions like 

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

shared is a problem halved’ and many more – all of which 

support this idea. When discussing the concept of meeting 

with a counsellor, you might also hear people say “Having 

coffee with a friend (or a beer with your mates), is all the 

therapy you need”. 

It’s true that talking to a friend can help you sort through your 

thoughts and put problems in perspective. They might just 

listen sympathetically, or may suggest solutions. Typically you 

would expect to feel comfortable and emotionally supported 

by your friend, who also knows you and your past history. 

It’s reasonable to raise the question, “Do you need a friend 

or a counsellor?”, when it seems that talking with a friend 

produces tangible benefits. 

First, it’s important to understand that counselling and coffee 

aren’t mutually exclusive – you don’t need to do one OR the 

other. It’s perfectly fine and appropriate to do both. 

Second, there are several reasons why, although you have 

good friends to talk to, you may want to consider including 

meeting with a counsellor as well. Some of the differences 

between meeting with a friend and meeting with a counsellor 

include the following: 

• Friendship is based on each person getting a chance to 

share their thoughts and their problems. When you meet 

with a counsellor you get a chance to make that time all 

about you. 

• A counsellor is objective – they stand outside your life, don’t 

judge, and don’t have a history with you and other people 

in your life. This allows them to be non-judgmental, and to 

suggest solutions which you may not have thought of. 

• Counsellors are professionals, trained to be effective 

listeners. A counsellor will notice your patterns of behaviour 

that are unproductive, and utilise strategies that have been 

shown to assist in changing those behaviours. 

• Although you’d expect friends to keep confidences you may 

tell them, sometimes your friend may end up in an awkward 

social situation as a result. A counsellor is a professional 

who always maintains confidentiality according to 

ethical guidelines, and won’t end up under pressure to 

divulge confidences. 

• If you are facing a serious long-term challenge, you may 

need to talk about the problems over a longer period than 

a friend is comfortable listening to them. A counsellor will 

understand this and ‘meet you where you are at’, not where 

a friend ‘thinks you should be’. 

• A friend might prefer for you to move on in life, but providing 

support and a sympathetic ear doesn’t always achieve that. 

Often when discussing problems with a friend the focus 

is on other people you may both know, and how they 

have behaved. 

• Because of counsellor objectivity and the nature of the 

counselling relationship, the focus is on you, and what you 

can do to improve. A counsellor is skilled at helping you 

move on beyond your current situation. 

• As wonderful as friends are, sometimes you require an 

expert to help you to cope with the difficulties that you’re 

experiencing, as difficulties arise that the best of friends 

do not have the expertise to help us tackle. Placing an 

additional ‘counselling’ expectation on a friendship can also 

cause unnecessary strain on that friendship. 

These points serve to highlight the differences between 

talking with a friend and meeting with a professional 

counsellor. To summarise, a chat with a friend should leave 

you feeling good, accepted and cared about. A series of 

meetings with a counsellor should leave you feeling listened 

to, understood, and should assist you in moving on with your 

life in a professional way. 

So, do you need a friend or a counsellor? Thankfully, you 

don’t need to choose, both have their place, and you can 

enjoy the benefits that each provides. 


NDIS UPDATE 

NIGEL CAREY, MSWA MANAGER NDIS BUSINESS DEVELOPMENT UNIT 

THE NDIS IS NOW SUPPORTING OVER 100,000 AUSTRALIANS 

DON’T MISS OUT! IT’S TIME TO ENROL IN THE NDIS 

The National Disability Insurance Scheme (NDIS) has 

reached a major milestone with over 100,000 Australians 

with disability now receiving life-changing supports funded 

through the Scheme. 

These supports, which enable our Clients to live a more 

independent life, include personal care and support, access 

to the community, employment pathways, therapy services 

and essential equipment. 

In WA, the NDIS also continues to grow rapidly and attract 

new participants across the roll out site areas. 

MSWA is currently supporting over 300 clients, with both 

MS and other neurological conditions, with funding under the 

Scheme. This represents a growth rate of over 100% over the 

past 12 months. Incidentally the average value of a WA NDIS 

plan is now $35,000! 

The full list of the WA trial sites is now as follows: 

• Lower South West (Busselton and surrounds) 

• Cockburn and Kwinana 

• Armadale, Serpentine-Jarrahdale and Murray (Pinjarra) 

• City of Swan, Kalamunda and Mundaring 

• Bayswater, Bassendean, Toodyay, Chittering, Northam 

and York 

• Mandurah and Rockingham 

Our team holds local NDIS Information Sessions. These sessions 

enable attendees to better understand the NDIS and make 

informed decisions about registering for supports with the NDIS, 

and what they can include in their plan. 

LATEST NEWS! UPDATE ON NEW MSWA SERVICES 

MSWA has recently introduced some new services which can 

be funded under the NDIS: 

• Nutrition (delivered by the Speech Pathology Department) 

• Continence and Catheter Management (delivered by the 

Nursing team) 

• Gardening (via Individual Options) 

• Massage is also increasingly popular (delivered by the 

Physio team) 

MSWA is also expanding its geographical reach with new 

on-the-ground facilities planned very soon for Armadale 

and Mandurah. 

THINKING OF ENROLLING IN THE NDIS FOR THE FIRST TIME? 

THINKING OF REVIEWING YOUR CURRENT SERVICE PROVIDER? 

THINKING ABOUT THE RENEWAL OF YOUR EXISTING PLAN? 

Our friendly MSWA NDIS team is always available to answer all 

your questions and advise you on the services we can offer you. 

We have a one stop shop to deliver a very smooth and easy 

customer journey! 

Please contact Christine Richards, Client Relationship Coordinator, 

for more information on how we can help you. 

Her details are as follows: 

Email: christine.richards@mswa.org.au 

Phone: 9365 4867 

Find out more about the NDIS by visiting the MSWA website: 

mswa.org.au/ndis_services 

YOUR CHANCE TO WIN A $100 SHOPPING VOUCHER! 

We are interested to learn more about your experiences under 

the NDIS. Drop us a line and tell us how the NDIS has helped 

you, and even how it could have provided a better experience 

for you. 

It can be as brief or as long as you like. Send your 

thoughts to: Nigel Carey (NDIS Business Development 

Manager) at nigel.carey@mswa.org.au. 

The three most compelling stories will each receive a 

$100 shopping voucher! 


YOUR SUPERANNUATION 

INSURANCE BENEFITS – 

KNOW YOUR RIGHTS 

Disability insurance is not typically at the forefront of the 

minds of many Australians, with many of us severely underinsured 

and unaware of insurance benefits attached to 

superannuation memberships. 

People living with multiple sclerosis and other neurological 

conditions can find it difficult to access any type of financial 

benefit or support after ceasing work due to their condition. 

This is particularly so when a person’s reason for stopping 

work is not covered by a statutory compensation scheme, 

such as WorkCover or the Insurance Commission of WA. 

In these circumstances, people can often access the benefits 

of disability insurance policies through their superannuation 

membership. In investigations conducted by our office, we have 

successfully claimed insurance benefits for our clients even if 

they stopped work several years ago due to illness or injury. 

There are two common types of disability insurance offered 

by super funds: 

• Income protection (IP) generally provides monthly payments 

of 75-85% of your previous earnings (capped at a specified 

amount) when you can’t work for a period of 2 years, 5 

years or sometimes even up to the age 67; 

• Total and Permanent Disability (TPD) insurance benefits are 

generally lump sums you can claim if you cannot return to 

any work in which you are educated, trained or experienced 

as a result of injury or illness. 

Please note: 

• Even if you stopped work many years ago, you can still 

make a claim. A claim can be made even if your insurance 

cover ceased between the time you stopped work and now, 

as long as you were a member of the super fund at the date 

you last actively worked. 

• Most Australians have more than one super fund meaning 

you may have multiple TPD insurances, and may be able to 

pursue multiple lump sum claims. You should seek advice 

about the implications of consolidating super accounts as 

you may be putting at risk potential insurance benefits. 

• If you are thinking about stopping work or reducing your 

work hours due to your medical condition it is important 

to get advice regarding the implications for your insurance 

coverage; there may be clauses in the fine print of your 

policy that will impact on your rights to claim later. 

You may have similar disability insurance through your 

employment contract or EBA or through your financial 

institution. It is always worth getting advice to make a claim 

in order to avoid any nasty surprises. 

Our experienced team of paralegals and lawyers will provide 

a ‘free check’ to ensure you have the cover. Once this is 

confirmed, our local Perth team will meet you, and provide 

expert legal guidance through the complexity of lodging claim 

forms and necessary evidence. They will also manage the 

legal issues that may arise during the claims process. 

It is never too late to check. If you have ceased working due 

to your MS or other neurological condition then contact 

Maurice Blackburn on 1800 196 050 for free advice on 

any superannuation or insurance questions, to check your 

potential cover for benefits, or help with an existing claim. 

www.mauriceblackburn.com.au/legal-services/ 

superannuation-and-insurance/ 

MSWA MAURICE BLACKBURN 

EMPLOYMENT FORUM 

SARAH LORRIMAR 

Joshua Boyes, Lawyer at Maurice Blackburn, 

made a welcome return to MSWA to present more 

information forums, at both the Wilson Centre and 

our Bunbury Hub. 

These seminars were targeted towards 

Members currently working or who have stopped 

working due to their MS and aimed to increase 

Members’ understanding of their legal rights 

surrounding employment. 

Joshua offered his time free of charge to provide 

our Members, Clients and their families, valuable 

information on issues such as disclosure in the 

workplace, stopping and starting work, travel 

insurance and disability claims. He also covered the 

topic of superannuation benefits; specifically, the 

claiming of a disability lump sum or pension under a 

superannuation fund. 

As always, this visit from Maurice Blackburn was 

another great success. Since the last presentation 

in November 2016 there has been an ongoing stream 

of calls to Joshua right up until last month! 

It is important to keep informed of your rights 

as well as the advice and services available to 

you. For further legal information, you may 

contact Joshua Boyes on 6424 4207 or email 

JBoyes@mauriceblackburn.com.au 

MSWA BULLETIN SPRING 2017 | 17

THE REFORMATION 

ROS HARMAN 

Who amongst you, dear readers, doesn’t remember the 

aerobics craze of the 1980s? Be honest. Who owned a bright 

coloured lycra, high-cut leotard and shiny tights? Did you 

have thick, slouchy leg warmers? I certainly did. Jane Fonda, 

you’ve got a lot to answer for. 

Aerobics was the way to get fit in the ‘80s. All around the 

country we headed to the gym to stretch, jump and sweat 

to heart-pumping music, all looking alike in our fluorescent 

exercise clothes and big hair. 

I don’t hear about aerobics much any more. Today, it’s all 

about Pilates. Everyone, from my 26 year old daughter to my 

70 year old neighbour, is doing it. 

When I first heard about Pilates I assumed it was another 

fad that would come and go and be largely irrelevant to me. 

Getting in and out of bed each day is often as much exercise 

as I can be bothered with. 

But that changed when my boyfriend bought a second-hand 

Pilates machine and installed it in the spare room. Admittedly 

I was dubious at first, but with his encouragement and 

assistance I managed to get on it and start moving. I was 

pleasantly surprised to discover that there were things I could 

do that used my muscles, but didn’t actually hurt. And with 

a bit of clever fiddling with furniture leg raisers, I could even 

transfer on to it from my wheelchair by myself. 

This Pilates machine is called The Reformer, which I think 

is very appropriate. Every New Year for as long as I can 

remember I have made resolutions about doing more exercise 

and getting stronger, only to slip into my usual lazy habits by 

mid January. Since having access to the Pilates machine, I 

am a reformed person! About four times a week I spend thirty 

minutes on the machine, and after only a few weeks, I am 

noticing some improvements. I am scared to get too excited, 

but I think my legs might be getting a little bit stronger, and 

as for my abdominal muscles, well....it’s too soon to be 

mentioning six packs but I am almost certain that under the 

soft belly fat there is a layer of something firm. 

I find that this tiny bit of success is going to my head. The MS 

centre at Wilson has now got a Pilates machine in their gym, 

and I’m actually looking forward to my next exercise program 

so I can show off what I can do. 

While I don’t believe I will be able to resume the aerobics 

classes of the ‘80s, I am starting to imagine all sorts of things. 

I feel that my back is getting straighter, my stomach flatter 

and my shoulders less rounded. I imagine myself being able 

to transfer from my wheelchair gracefully. I dream of things 

which involve strong muscles and a svelte physique, things 

like – dare I say it – walking. Well, walking with a walker for 

now. Let’s start with the possible; miracles can wait for later. 

I think I will buy a pink leotard and blue tights. Maybe 

even a headband to hold back my big hair. Aye, there’s 

the rub, as the bard would say. For that dream of youthful 

vigour to work, I’d better dye my grey roots first. 


THAT’S LIFE 

WITH NARELLE 

NARELLE TAYLOR 

I reckon the secret to living a life of creditable achievement 

and contribution is to firstly, remain alert and ‘in touch’. That 

way, we’re then aware of what needs to be done. 

Those of us that just sit around, waiting for things to happen, 

may well be responsible for slowing down the progress 

of civilisation. 

I’ve met people who’ve probably held up its progress for 

thousands of years. They invariably are doing nothing except 

expecting something to happen even though they have made 

no contribution to alter the way things are. If we can’t be 

innovative, let’s just be very good at what we’ve always been 

good at. 

If we strive for improvement, we must be contributing 

to progress. 

Lately I’ve done some intensive daydreaming about swimming 

classes for me. I’d attend them regularly at, say, Beatty Park, 

for serious swimmers, not far from here. 

When I was young, and ‘in training’, my Dad would drive me 

to the pool each morning. I reckon I could adhere well to that 

kind of routine these days … I could easily get back into it. 

My father still goes to the beach each morning where he lives, 

in Sydney, and I think it’s his swimming, his regular exercise, 

that keeps him so mentally sharp as well as physically fit. I’m 

hoping some regular physical activity will work like that for 

me too. 

Dad turned 91 last March and competed in the Masters World 

Swimming Championships in April, in Auckland, NZ. As a 

result, he is currently the World Champion 91 year old for 

200 metres, 100 and 50 metres Freestyle as well as the 50 

metres Backstroke. My planned aqua-therapy will release me 

into the world of competitive swimming. I can, when out of this 

wheelchair and into the water, finely-tune my own swimming 

skills. I’ll challenge other people doing aqua-therapy. They’ll 

be trembling in their floaties. 

My sporty grandchildren Claire, Alby, Max, Milla and Lucy. 

There are members of my family (grandchildren), who excel in 

all different kinds of sport but I don’t think any of them feels 

threatened by my wanting to get back into form. My 15 year 

old granddaughter Milla, plays State Basketball, and is going 

with her team to play in America before Christmas. I’m just so 

pleased, especially for her sake, that she has grown so tall (as 

per my instruction), and practiced and trained so hard (also 

my suggestion). Besides having to do all that to qualify, she, 

like me, is a ‘natural’. Her teenage brother, Max, is an Aussie 

Rules football star of sorts and their cousin Claire, is a Karate 

dynamo. Sporting prowess is something our entire family is 

used to achieving. 

Getting older has denuded my plans for excellence in sport. 

Multiple sclerosis may have kept my ambitions in check but 

it’s provided me with a fairly plausible excuse for not always 

performing excellently. The long-awaited for and finally 

available drug to treat Progressive MS may be fairly useful for 

completing my plans of achieving excellence. It’s just a matter 

of time. I think that once cured, I’ll only need about 20 years of 

physiotherapy and then, the world will be my oyster. 

All the grandchildren will each be excelling in their 

chosen sport and I will be committed to my tactical 

physiotherapy and will be jet-streaming in the pool. 

It will be great. 


ANNUAL MSWA 

DINNER AUCTION 

GAIL SZABO, MSWA MANAGER - EVENTS 

George Pampacos, MSWA President, Susanna Panaia. 

On Thursday, 24 August the Board of Directors hosted the 

annual MSWA Dinner Auction at the stunning Fraser’s State 

Reception Centre. 

This annual event allows us to thank our supporters while 

raising much needed funds for Western Australians living 

with MS and other neurological conditions. This event is not 

possible without the ongoing support of our sponsors and 

donors and thanks to their continued efforts we raised a 

record breaking $54,000 dollars. 

It was a beautiful evening and State Reception Centre, 

Kings Park played host to 290 guests including Members, 

dignitaries, sponsors and staff. The night included a panel 

interview with Marcus, MSWA Member Anita Gamba and 

MSWA Occupational Therapist Ilissa Liew. They gave the 

audience an insight into MS and the organisation, and 

what it’s like to experience and deal with MS from both 

their perspectives. 

George Pampacos, MSWA President, Amity Travel Centre, 

Sandy Chittock, Luke Chittock 

Our main auction items had a great response and got the 

bidding wars started. To name a few, there was a beautiful 

pearl necklace, a holiday for two to Spain, and a private 

kick-2-kick with Josh Kennedy including a tour of the Eagles 

changerooms. 

Another evening highlight was the announcement of the 

Commitment Award winners for 2017 which were Amity 

Travel Centre and community fundraiser, Susanna Panaia. 

Both work tirelessly throughout the year to raise money and 

in-kind support. They are the wonderful people who do not 

seek reward and are rarely recognised. 

Once again, thank you and congratulations on another 

successful night which brought together MSWA 

Members and the Western Australian community. 


MSWA VOLUNTEER 

UPDATE 

DAWN BURKE, MSWA COORDINATOR OF VOLUNTEERS 

Hello and welcome one and all to the Spring Edition of the 

MSWA Bulletin. Can you believe it’s nearly time to bring out 

the sun hats and put away the umbrellas? Mind you, last 

summer we had copious amounts of rain, so who knows 

when a brolly is needed. 

On the volunteering front, it has been quiet and everyone 

seems to be behaving themselves, or so I’m led to believe. 

The only movement we have had is within the Wilson Kitchen 

with one of our regular volunteers, Priay Rath, hanging up her 

apron and starting a new job. We wish her well in all of her 

endeavours. I have said this before and I will say it again, we 

are very lucky here at MSWA to have long term dedicated 

volunteers. With such a dedicated team, we have consistency 

right across our volunteering program, which is fantastic for 

both Members and staff. 

I have attended some training over the past few months, 

including a fantastic workshop that was facilitated by Peter 

Kenyon, Community Enthusiast and Social Entrepreneur. He 

was so engaging and made the workshop very lively, friendly, 

lots of fun and a great forum for networking. The workshop 

was around Retaining, Recruiting and Recognising Volunteers. 

Peter’s focus was on community reconnection and volunteer 

contribution through story telling. 

One of the exercises got people into a group of four to six; 

we were then given a big list of skills that are required within 

communities. This list had approximately seventy different 

skills from baking to administration, photography, meeting 

people, changing tyres, answering phones, and the list goes on. 

It was amazing to see in my group of four people that we 

ourselves, or someone we know, can offer that skill. After 

completing the task our group only had 12 skills listed that we 

couldn’t do. This was an amazing and enlightening exercise. 

I am truly grateful for being connected with both the Swan 

Volunteer Resource Centre and Melville Volunteer Resource 

Centre, as they make these workshops available and usually 

free for Coordinators of Volunteers to attend. 

There was an interesting article handed to me by one of 

our volunteers that they found in The Weekend Australian. 

The article shares the statistics of communities and people 

committed to helping others from the 2016 Census. There 

are people out in the wider communities who state that as 

a society we are becoming more self-centred and losing our 

sense of community. 

When going over the 2016 Census and comparing it to the 

2011 Census, volunteering increased by 2%. This may not 

sound like much but across the board it is a significant 

increase. Who says volunteering isn’t alive and well? In 

Perth 19% of the population are volunteering, including here 

at MSWA. Well done to you all for committing time to assist 

in the wider community and to make a difference to people 

in need. 

The MSWA Dinner Auction was held on Thursday, 24 August 

at the State Reception Centre, Kings Park. I volunteered my 

time for the evening and what a beautiful venue to hold such a 

worthwhile event. The views of the city are absolutely stunning! 

It was lovely to see everyone enjoying the evening and the 

auctions in full swing. The number of items up for auction was 

amazing. The MSWA Events team do a fantastic job gathering 

donations and the funds raised help make a difference to 

those that we serve, and to raise the MSWA profile. 

Throughout the night a local artist from Fremantle, Shakey 

Art by Jacob Butler, created a live painting which was then 

auctioned at the end of the evening. If I’m not mistaken it was 

a picture of the lighthouse on Pinky Beach, Rottnest Island. It 

was fantastic to watch him work and watch his blank canvas 

turn into an amazing portrait. 

Christmas is again knocking on the door, and we are in 

planning mode for our fun filled Christmas Party for Members, 

Volunteers and Staff here at MSWA. I hope you will all be able 

to make it this year and I wonder what my outfit will look like! 

Don’t be shy and come dressed up in something colourful, 

wacky or weird. 

That’s all I have for now and I hope this edition finds you all fit 

and well. We are truly blessed to have volunteers within the 

organisation and we cannot thank you enough for supporting 

the staff and Members, no matter what time is given. 

I look forward to catching up with you all at some time. For 

new volunteers, welcome, and to our regular and not so new 

volunteers, thanks for being part of our family. 

Take care and until next time. 


THE SANCTUARY 

ZURAINI HUSSAIN, MSWA CARE SUPPORT WORKER WILSON OUTREACH 

It has been an exciting start for the ‘Embrace the Shake’ 

ladies this year. We started with our first excursion to Scented 

Garden located in South Perth, which gave us an idea to bring 

the garden to our Outreach, but we named it ‘Sensory Garden’. 

As we all know, we have enthusiastic, talented and creative 

ladies in our group, and as usual we always come up with 

brilliant ideas. This time we had an opportunity to make a 

sign for our little courtyard at Wilson Outreach. We named it 

‘The Sanctuary’. 

Because of our ‘steady’ hands, we found out playing with 

drills and saws was a bit challenging for us, so we nicely 

asked our volunteer gardener John to help us with the cutting 

and nailing of the boards. It took us three Mondays to finish 

this project. 

As the weather is slowly getting nicer, I can see that The 

Sanctuary is getting more and more popular among our staff 

members from the office coming down and having their lunch 

here. I am really pleased to see that our little courtyard is not 

only being used by our Members in the Outreach. Well, not to 

mention, used regularly by Embrace the Shake ladies, for our 

favourite morning tea spot! 

With spring sprung, we are trying to give more colours to our 

courtyard, to make it more presentable and more attractive. 

We are in the process of planting colourful petunias, annuals 

and perennials. 

Whenever you have an opportunity to come to Wilson 

Outreach, please do feel free to visit The Sanctuary! 

FIFTH ANNIVERSARY OF 

TREENDALE GARDENS 

This year marked the 5th Anniversary of the opening of 

Treendale Gardens. It has been five very successful and 

enjoyable years with many changes along the way. 

Over those five years, with some residents moving on or 

sadly passing away, we have finally reached full capacity in 

our accommodation facility. We are also happy to say that 

we have managed to maintain most of the original staff and 

employed many new and respected staff members to come 

along this journey with us. 

On 8 June 2017 around 70 invited guests, staff, residents 

and respite clients as well as Members’ families helped us to 

celebrate those five years with a small party in the communal 

area of Treendale. This was catered for by our own cook 

Belinda, or should I say chef, who put on a beautiful spread of 

finger foods and an amazing Croquembouche for the birthday 

cake, ably assisted by Zoe. 

After an opening welcome by Treendale’s Coordinator Paula 

Kennedy all guests had a very enjoyable afternoon mingling 

with each other and also managing to consume all of the 

beautiful food. 

We are looking forward to seeing what the next 

five years has in store for us all and hope that everyone 

who shared this special day will be able to return for our 

next celebration. 


NEWS FROM THE GREAT SOUTHERN 

OUTREACH GROUP (ALBANY) 

CAROLINE CLARK-SMITH 

Wow this year has gone fast! We have really tried to connect 

with as many Members as possible in the region by taking 

our outings on the road, as such. One of our Members from 

Denmark suggested that we do a lunch outing there so that 

they could attend. So, a small group of Albany Members made 

the trip to Denmark and enjoyed a leisurely lunch at the Tavern, 

meeting new Members, chatting and having a great catch up. 

As this went so well we decided to branch out further and a 

few of us made the road trip to Katanning; catching up with 

five local Members from there and the surrounding district. 

It was great to finally meet some of them and we will be 

planning another trip back there. 

Albany Outreach has had some interesting weeks including a 

Hawaiian themed day with great food, interesting activities, 

hosted guest speakers and we had some talks on medications. 

We are looking forward to one on cognition and MS and 

hopefully a dietitian to round out the year. Suggestions are 

always welcome. 

We have also had some new games added to our group 

stock so come in and check them out as we will do game 

days which will be good practice as the annual camp is 

coming up in November! We have had a few Members show 

interest already. 

All the staff have been super busy with Physio classes being 

held over a 6-week course and we are hoping to start another 

one soon. Anne, our OT has been kept busy with many 

inquiries about equipment, home modifications and help in 

general as well as the Nursing and Care Support Coordinator 

who are also fielding many questions and Massage is busy as 

they provide a great service. 

Planning for the famous Albany Swim for MSWA is already 

under way, Saturday, 24 February 2018 is the big day! 

I would like to thank everyone – staff, Members and 

volunteers for their support and help with the group. 

MSWA SOUTHSIDE OUTREACH NEWS 

ANGIE WALLACE 

Our Friday group seems to get bigger and busier each 

week. Our four-hour session is full of activity, laughter, 

sharing of mobile phone photos (new grandkids/puppies 

etc), some craft and often a quiz or two. 

In amongst all the fun and games we manage to fit in time 

for physio and massage. 

Thanks to Nicola and the other staff and volunteers, the 

rooms looked lovely and bright (and yellow) for the recent 

Daffodil Day. We do appreciate your efforts! 

The news that CEO Marcus is staying on was welcomed by 

everyone. We all know he is irreplaceable! 

Lively Giselle has left us for Beechboro Outreach – thanks 

for all the fun. Thanks also to Rosemary and Sherrill for 

providing wonderful lunches each week – your energy 

levels seem limitless. Tuesday group’s monthly lunch will 

now happen fortnightly so you will be extra busy. 

Hurry and get well Jan. We miss you. After all, you’ve been 

part of our weekly Outreach for about 20 years!! 

Finally, we are hoping our group is a winner in the 

up-and-coming MSWA Mega Home Lottery. Between us 

we have bought eight tickets (syndicates)! Surely one of 

them is a BIG winner! 


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MSWA Bulletin Magazine Spring 17_WEB

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