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.
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.
Fold, Pack, Travel
1300 622 633 www.scootersAus.com.au
WH20495/Intouch
WH20495 ScootersAust_Intouch-90Hx210mmW.indd 1
1/2/17 12:42 pm
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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