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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.

4 | MSWA BULLETIN SPRING 2017


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.

MSWA BULLETIN SPRING 2017 | 5


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.

6 | MSWA BULLETIN SPRING 2017


A message from the General Manager –

Member Services

SUE SHAPLAND RN, BN

“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.

MSWA BULLETIN SPRING 2017 | 7


ROUND-UP OF RESEARCH

AND OTHER ITEMS OF INTEREST

SUE SHAPLAND RN, BN

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.

8 | MSWA BULLETIN SPRING 2017


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 BULLETIN SPRING 2017 | 9


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.

10 | MSWA BULLETIN SPRING 2017


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

MSWA BULLETIN SPRING 2017 | 11


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.

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12 | MSWA BULLETIN SPRING 2017


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.

MSWA BULLETIN SPRING 2017 | 13


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.

14 | MSWA BULLETIN SPRING 2017


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.

MSWA BULLETIN SPRING 2017 | 15


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!

16 | MSWA BULLETIN SPRING 2017


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.

18 | MSWA BULLETIN SPRING 2017


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.

MSWA BULLETIN SPRING 2017 | 19


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.

20 | MSWA BULLETIN SPRING 2017


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.

MSWA BULLETIN SPRING 2017 | 21


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.

22 | MSWA BULLETIN SPRING 2017


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!

MSWA BULLETIN SPRING 2017 | 23


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