MSWA Bulletin Magazine Autumn 17

BULLETIN
THE OFFICIAL MAGAZINE OF MSWA mswa.org.au
AUTUMN 2017
ROB’S STORY
MSWA ENROLS ITS 200TH NDIS CLIENT!
ARE YOU A PROCRASTINATOR?
SPECIAL DIETS AND MULTIPLE SCLEROSIS

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 4809 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
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
MEMBER SERVICES
DIRECTORY
GENERAL MANAGER – MEMBER SERVICES
Sue Shapland: 9365 4840
INDIVIDUAL OPTIONS
Manager Community Care Programs,
Gail Palmer: 9365 4851
NDIS TEAM 1800 287 367
OUTREACH GROUPS
Wilson Outreach (Mon-Thurs): 9365 4830
Beechboro Lodge (Mon, Fri): 9377 7800
Southside Outreach (Fri): 9592 9202
Bunbury Outreach (Wed): 9791 2472
Albany Outreach (Fri): 9841 6657
BUNBURY OFFICE
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, Liz Stewart: 9356 2747
HAMILTON HILL ACCOMMODATION
Manager, Jayne O’Sullivan: 9331 5780
TREENDALE GARDENS RESPITE &
ACCOMMODATION
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),
David Bugden, Sue Shapland, Ros Harman,
Bhavna Jagtiani, Libby Cassidy, 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.
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, Speech Pathologist: 6454 3140
COUNSELLING 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 nonjudgemental
environment. 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.
Irene Gallagher, Senior Social Welfare Officer: 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 Commission (DSC) and our own fundraising efforts. We manage both
DSC and NDIS individually funded care packages.
Contact us on 9365 4851 for more information.
THE NDIS TEAM We provide a convenient and fast one stop shop to enable you to
easily transition to the NDIS as it becomes available in your area. We help you determine
whether you are eligible for assistance under the NDIS; we guide you through the
application process and then we help you develop a comprehensive NDIS plan to
maximize your entitlements. We support people with all neurological conditions.
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 AUTUMN 2017

Letter from the Editor
DR GREG BROTHERSON
This is the first of four Bulletins you will receive this year and
it is autumn already. Where did the time go? Mark Twain had
the answer for the way time escapes us. He once said, “Let
us adopt geologic time.” There is more but we have better
things to do with our time.
The big event this month is the opening of MSWA’s Community
and Health Services Centre in Bunbury, which some might
say was also a long time coming. I was fortunate enough to
join members of the Board of Directors on 22 February when
they inspected the building, and then took further time out to
hold their monthly Board Meeting. The building is spacious
and a wonderful asset for MSWA (more in the South West
Regional Round-up Section on page 24).
Being a regular visitor at Treendale Respite, I managed to catch
up with Marie Harris, who was the first regular correspondent
for the Bulletin.
There has been a long and harmonious relationship between
the Society’s management at Wilson and people with multiple
sclerosis in Bunbury, dating back to 1979, when the Bunbury
Outreach group were fundraising for MS.
In 1983, the Society, then situated at Clontarf, was established
enough to receive grants from the Lotteries Commission for
air-conditioners for private homes, and wheelchair batteries, and
branches in Bunbury, Busselton and Albany were established
and mature enough to fundraise for themselves. Bunbury in
particular was beginning to show signs of acting independently.
In 1988 Bunbury was a step ahead of Perth, which had no
respite service for young people in Perth nursing homes
(the intent being to give these young people a holiday and
their carer a break). Bunbury already had the South West
Association for the Physically Handicapped (SWAPH), which
Inside | Autumn 2017
Letter from the Editor 3
From the desk of the CEO 4
A message from the General Manager – Member Services 5
Round-up of research and other items of interest 6-8
MSWA enrols its 200th NDIS client! 9
MSWA Speech Therapy Services Update 10
Weekend physiotherapy service starting at Wilson 10
Peer Support Groups have returned for 2017! 11
muMS group 11
Are you a Procrastinator? 12-13
Rob’s Story 14-15
Special diets and multiple sclerosis 16-17
was receiving funding to provide an out-of-home respite
service in Bunbury. To make use of this service, the Society
would put a Member on the train in Perth, who would be met
on arrival in Bunbury and transported by volunteers to the
SWAPH respite home for a holiday.
Perth Members flocked to Bunbury in such numbers that
an application for a similar home in Perth resulted in the
Margaret Doody Respite home at City Beach being built by
the Society. If it wasn’t for SWAPH, our respite at Treendale
and City Beach may have never existed.
In July 1990, however, the Bunbury Outreach Group decided
to look at breaking away from the Society, and set themselves
up as an independent identity. Certain members of the Board
at Wilson even went so far as to discuss the prospect with
the CEO of the National Society, and a sub-Constitution for
Bunbury was even considered (the wise men of the East
never did fully understand MSWA’s unique Constitution).
Concessions were made, an understanding reached and it
was decided to pull together as a team.
To help the bonding process, the editor of the Bulletin offered
to publish a monthly Bunbury Outreach article, and so my
long association with Marie Harris commenced. The result
of Directors interfering in management in 1990 is one which
will have to await the publishing of the History of MSWA later
this year. Bunbury has always been a major supporter of the
Society, clearly the bond is strong.
MSWA Bunbury now has the finest Community and Health
Services Centre anyone could possibly wish for, the result of
cooperation not separation, and an expanding South West
Regional Round-up section in the Bulletin. Thank you, Marie,
for reminding me.
Protect yourself against the flu 18
Weird Sisters 19
That’s life with Narelle 20
The fine art of a wonderful relationship 21
MSWA Massage comes to Geraldton! 21
MSWA Volunteering News 22-23
South West regional round up 24-25
Albany Outreach News 26
First Albany Staff Christmas function held in December 2016! 26
Busselton Outreach news 27
Wilson Outreach news 27
MSWA BULLETIN AUTUMN 2017 | 3

From the desk of the CEO
MARCUS STAFFORD
“Do you think it’s going to rain?” That simple question would
have been asked on every trip, when as a kid, our family would
head off for our occasional weekend outing to ‘the seaside’.
You may know that I’m originally a London boy, making our
coastal retreat invariably Southend-on-sea. Not quite the
Western Australian coastline, but hey … you can’t help where
you were born!
Trouble was that it wasn’t the pebbles on the beach that
risked spoiling the weekend. It was the English weather.
Warm with calm seas one minute. Raining with significant
chop the next.
Although I’d ask the, “do you think it’s going to rain” question
time and time again, my parents would always give me the
same patient response.
“Focus on what’s in your control and don’t worry about
what’s not!”
I’ve tried to retain that approach to life, sometimes more
successfully than others.
The NDIS (National Disability Insurance Scheme) falls in the
‘not in my control’ category.
My preference for a State administered scheme is on the public
record. I believe that it would provide decision making close to
the customer and their families. A right that we shouldn’t give
up for short-term expedience and an approach that would
allow us to respond to the needs of Western Australians with
disabilities quickly and with the benefit of local knowledge.
But, I value democracy as one of the great foundations of
our society.
On March 11 Western Australia voted in a new Labor party
with a significant majority. A responsible new Government
must review the decisions of their predecessors and decide
which ones fit within their ethos and plans.
The management of the NDIS sits within that list of things
under review. Although not in my control, I have ensured that
the new Minister, Premier and Treasurer are aware of the
rationale for my views. As part of that democratic process,
we all now await their decision.
With a growing sense of satisfaction and pride I spend the
overwhelming majority of my time focussing on what is in our
control. That is the performance of MSWA.
With three quarters done in the budget year and one left to
close out, we are looking good against all measures.
Financials are strong on both profit and loss for current
trading, cashflow for operation, and balance sheet that
safeguards our future.
Percentage rise in both our Member services for people with
MS and Client services for people with other neurological
conditions is enjoying double digit growth. Member services
includes things like physiotherapy, speech therapy, occupational
therapy, nursing, counselling, outreach, care support work,
respite, supported accommodation and social welfare.
To ensure that we don’t myopically focus on quantity
without quality indicators, our Member quality survey shows
satisfaction ratings in the high nineties.
Our strategic footprint is growing as planned. Since the last
Bulletin article we have finished and opened the new award
winning services hub in Bunbury and purchased the land for
the accommodation and services facility in Butler in the north
metro area.
Although we’re a couple of months away from finalising our
contribution to research, I am confident that in June, we will
post the largest contribution to research in MSWA’s history.
So, those words, “Focus on what’s in your control and don’t
worry about what’s not” have stood the test of time.
Our organisation has gone from strength to strength,
steered by 650 capable and dedicated staff, who are
passionate about making a positive difference for people
with MS and all 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 donna.hill@mswa.org.au or call 9365 4869
and let us know your current email address.
4 | MSWA BULLETIN AUTUMN 2017

A message from the General Manager –
Member Services
SUE SHAPLAND RN, BN
“It always seems impossible until it’s done,”
Nelson Mandela
I can see this quote being applicable to so many circumstances;
climbing a mountain, researchers looking for new treatments,
renovating a house, learning to ride a bike and I am sure for
those who dared to dream of, and create, a National Disability
Insurance Scheme (NDIS).
As always, the days are flying past, New Year is a distant
memory, as we have well and truly got back in the saddle for
the gallop through 2017!
The NDIS is still the hottest topic in town - see Marcus’ article
and the update from Nigel and our MSWA NDIS Team - but
thankfully we now have greater clarity regarding the roll out
timetable. From my perspective, it is heart-warming to see
Members now accessing more timely funding for aids and
equipment, home modifications, and supports and services.
Of course, this is currently limited to the trial sites and the roll
out will continue until 2020, but the difference this makes
cannot be underestimated.
We have now opened our very spectacular Community and
Health Services Centre in Bunbury, see my article and photos
on pg 24, and are planning to start the north metropolitan
project - a services centre and high support accommodation.
This is a very exciting time for us and we are all very proud of
these achievements, as we should be, as MSWA has funded
the purchase of land and construction of several MSWA
facilities over the past five years. Treendale Gardens, Hamilton
Hill Stage 2 and now Bunbury. We will also be building in
Albany and Shenton Park in the not too distant future.
These projects, the growth in our supports and service
hours for Members and our significant annual MS research
contributions, are all thanks to the generosity of our donors,
the huge success of our fundraising ventures and events, and
the diligent oversight of our finances by our Board.
We have been steadily increasing our supports in some
regional areas. We now have massage services in Northam
and Geraldton and greater physiotherapy cover through the
South West. We have just started an Outreach Group in
Busselton meeting monthly, and a weekly physiotherapy and
massage program.
The annual Members Survey is currently being collated; thank
you to everyone who responded. I will provide a summary
of the results in the next Bulletin. Many must feel they are
experiencing survey overload and I apologise for this but your
feedback is important and we also survey various programs
to meet some requirements of our contracts.
This year sees two new MS treatments released in Australia;
both of which have been in the development pipeline and
mentioned by neurologists at our seminars. Zinbryta (also
known as daclizumab) and Ocrelizumab which has shown
promise for progressive MS. For more information, you can
contact our MS Nurses and/or speak with your neurologist.
The administration and finance staff have recently relocated
to the Bentley Office, freeing up much needed space for the
growing Member Services Team at Wilson.
Don’t forget the sneezy season will be upon us before we
know it so don’t forget to chat with your GP about the flu shot!
Our annual MS Awareness Forum will be held in the morning
of Friday, 2 June. It will feature an update by Prof Bill Carroll,
an NDIS update by Marion Hales McDonald from the Disability
Services Commission and presentations by two of our MSWA
funded local researchers. So save the date and we will keep
you updated. RSVP is essential for seating and catering, you
can email Donna.Hill@mswa.org.au to go on the list.
We do hope you enjoy this edition of the Bulletin and
would like to remind you that the Member Services
Team are here to support you. We are a phone call or
email away and happy to provide tailored and up to date
information about MS, the treatments and/or how to
manage your symptoms effectively. We have extensive
resources available and a host of information and
other forums you might like to attend. Please call us on
9365 4888 or email Get-In-Touch@mswa.org.au.
MSWA BULLETIN AUTUMN 2017 | 5

ROUND-UP OF RESEARCH
AND OTHER ITEMS OF INTEREST
SUE SHAPLAND RN, BN
Here we bring you some interesting research updates
from various sites around the world.
From the Barts MS Blog
(an excellent UK MS site overseen by Prof Gavin Giovannoni)
Can you reduce the chances
of your children getting MS?
This blog looked at the issue
and commented on the paper
below. It is interesting reading.
Obesity, particularly adolescent
obesity, is an MS risk factor.
The study below shows this
risk extends into childhood or
paediatric MS.
Distinct effects of obesity and puberty on risk and age at
onset of pediatric MS.
Chitnis et al. Ann; Clinical Translational Neurology. 2016 Nov
4;3(12):897-907.
The aim of this study was to examine the relative contributions
of body mass index (BMI) and pubertal measures for risk and
age of onset of paediatric MS.
This multi centred case-control study, in the US, included 254
(63% female) MS cases (onset 18 years of age) and 420 (49%
female) controls conducted at 14 U.S. Pediatric MS Centres.
Results: 11% of girls and 15% of boys were prepubertal at
MS onset. 80% of girls had onset of MS after menarche; BMI
percentiles were higher in MS cases versus controls. In girls
with MS onset after menarche, higher BMI was associated
with younger age at first symptoms and younger menarche
was associated with stronger effects of BMI. In pubertal/
post pubertal boys, 89% were obese/overweight, and earlier
sexual maturity was associated with earlier onset of MS.
Interpretation: Higher BMI in early adolescence is a risk
factor for MS in girls and boys. Earlier age sexual maturity
contributes to earlier age at MS onset, particularly in
association with obesity.
Optimism and adaptation to chronic disease: The role of
optimism in relation to self-care options of type 1 diabetes
mellitus, rheumatoid arthritis and multiple sclerosis.
Fournier et al.; British Journal Health Psychol. 2002 Nov;7
(Part 4):409-432.
Objectives: To determine the role of optimistic beliefs in
adaptation processes of three chronic diseases different in
controllability by self-care. It was expected that optimism
towards the future would relate to adaptation independently
of the controllability of disease. Optimism regarding one’s
coping ability should be beneficial in controllable diseases.
Unrealistic optimism was expected to be beneficial in
uncontrollable disease.
The study involved 104 patients with type 1 diabetes, 95
patients with rheumatoid arthritis and 98 patients with MS,
recruited through five hospitals.
Results: The study found that when chronic disease must be
controlled by self-care, physical health depends more strongly
on positive efficacy expectancies. In contrast, when self-care
options for controlling chronic disease are limited, physical
health depends more strongly on positive unrealistic thinking
and relates negatively to positive efficacy expectancies. The
impact of the three optimistic beliefs on mental health is
independent of the controllability by self-care.
Conclusion: Optimistic beliefs are differently beneficial for
physical health dependent on the controllability of chronic
disease. Unrealistic beliefs are helpful when patients are
confronted with moderately to largely uncontrollable disease
where self-care options are limited, in contrast to positive
efficacy expectancies that are helpful when patients deal with
largely controllable disease where self-care is required.
Read more at:
mswa.org.au/researchupdate
6 | MSWA BULLETIN AUTUMN 2017

From MS Research Australia
(MSWA continues to provide a large contribution annually to
support MS Research in Australia)
Research Grants Awarded to Fight Progressive MS.
In 2013, the Progressive MS Alliance brought together MS
experts to identify the priorities to overcoming the barriers
to progress. The Alliance is now focused on four research
priority areas needed to provide the breakthrough treatments:
• Better understand progression so we can identify and
test treatments
• Design shorter, faster trials that measure patient outcomes
• Conduct trials to test agents
• Develop and evaluate new therapies to manage symptoms
The International Progressive MS Alliance recently provided
three large multi-year grants to networks of some of the
world’s best MS researchers to lead the fight against
progressive MS. Each grant is for €4.2 million (A$5.8 million)
and will run over four years.
MS Research Australia’s support of International Progressive
MS Alliance is made possible by the generosity of some of our
funding partners including Foundation 5 Million+ and MSWA.
Epstein-Barr and MS Research by Prof Michael Pender
Prof Pender is based in Queensland and is investigating the
role of T cells and EBV (Epstein Barr Virus) in the development
of MS.
There is considerable evidence that EBV infection plays a role
in MS, but its exact role remains unclear. EBV usually causes
a non-specific viral illness in childhood, but also causes
glandular fever. Research has shown that approximately
90-95% of the population have been infected with EBV
during their life, whilst almost 100% of people with MS have
been infected.
Professor Pender and his research team are investigating
the differences in the immune systems of people with MS,
and how they interact with EBV. Results suggest that during
a relapse, and at the early onset of the disease, there is an
increase in the number of EBV-infected B cells. This research
may potentially result in another strategy to combat MS.
The power of big-data to guide treatment choices in MS.
Australian researchers Dr Tomas Kalincik, Professor Helmut
Butzkueven and their colleagues at the University of Melbourne
have been leaders of an international effort to use real-life,
long-term clinical data from people with multiple sclerosis to
guide treatment choices.
Analyzing MSbase data, collected from thousands of people
with MS, they hope to identify a more personalised approach
to treatments with individuals and their clinicians being able
to more rapidly determine their most appropriate treatment
choices based on the best-available evidence.
Thousands of patients in the database are carefully matched
by age, gender, disease course and treatments. This allows
them to be ‘followed’ using their data to review the outcomes
of different treatment choices.
The researchers have published a number of articles and
presented at many National and International MS Conferences.
World-first blood test to aid
prognosis and treatment of MS.
A major international study
is being led by Australian
researchers Dr Edwin Lim and
Professor Gilles Guillemin from
Macquarie University.
They discovered the first-ever
blood biomarker – a chemical
identifier in the blood – for distinguishing the different types
of MS; a very complex and varied disease where treatment
decisions can be challenging.
MS has three forms, relapsing-remitting MS, secondary
progressive MS and primary progressive MS. The various
forms have very different outcomes and treatment
implications.
Prof Guillemin commented, “This is a significant discovery
because it will facilitate the ability to quickly and simply
diagnose the three types of MS and will allow clinicians to
adapt their treatment for MS patients more accurately and
more rapidly.”
continued over >>
MSWA BULLETIN AUTUMN 2017 | 7

From the UK MS Trust
Can ocrelizumab slow down disability in primary
progressive MS
Ocrelizumab is a new treatment which reduces the number of
B cells, a type of white blood cell, thought to be involved in the
abnormal immune response that attacks the myelin on nerve cells.
This study tested whether ocrelizumab could prevent an increase
in disability in people with primary progressive MS (PPMS).
732 people with PPMS took either ocrelizumab or a placebo
as an intravenous infusion (drip) every six months for at least
two years.
Fewer people taking ocrelizumab had increased disability,
compared to placebo. Comparing the two groups, people
taking ocrelizumab were 24% less likely to have an increase
in their disability than those taking placebo.
Infusion-related reactions, chest infections and oral herpes
were more frequent in the ocrelizumab group. Neoplasms
(which can be benign or malignant) developed in 2.3% of those
taking ocrelizumab, this included four cases of breast cancer.
compared with 0.8% of the placebo group. The results suggest
that ocrelizumab could slow down the progression of MS.
Ocrelizumab is also being approved as a treatment for
relapsing-remitting MS. Data showed that ocrelizumab
reduced the number of relapses by 50% compared to beta
interferon.
From Neurology / Neuroscience - Feb 9, 2017 Edition
Sleep helps recalibrate brain cells responsible for
learning and memory, mice study shows
Scientists at Johns Hopkins studying mice have identified
evidence that a key purpose of sleep is to recalibrate the brain
cells responsible for learning and memory. This allows the
animals to ‘solidify’ lessons learned and use them when they
awaken – in the case of nocturnal mice, the next evening. “Our
findings solidly advance the idea that the mouse and presumably
the human brain can only store so much information before it
needs to recalibrate,” says Graham Diering, Ph.D., who led the
study. “Without sleep and the recalibration that goes on during
sleep, memories are in danger of being lost.”
He also commented, “The bottom line is that sleep is not really
downtime for the brain. It has important work to do then, and
we in the developed world are shortchanging ourselves by
skimping on it.”
People living in neighbourhoods with more birds, shrubs
and trees less likely to suffer from mental health issues.
People living in neighbourhoods
with more birds, shrubs and
trees are less likely to suffer
from depression, anxiety and
stress, according to research
at the University of Exeter, the
British Trust for Ornithology and
the University of Queensland.
The study, involving hundreds of
people, found benefits for mental
health of being able to see birds, shrubs and trees around the
home, whether people lived in urban or more leafy suburbs.
The study, of over 270 people of different ages, incomes
and ethnicities, also found that those who spent less time
outdoors than usual in the previous week were more likely to
report they were anxious or depressed.
The positive association between birds, shrubs and trees
and better mental health applied, even after controlling for
variation in neighbourhood deprivation, household income,
age and a wide range of other socio-demographic factors.
From the National Multiple Sclerosis Society
Study Finds That Some Family Members of People with
MS Show Possible Early Signs of the Disease without
Symptoms.
A large-scale “Genes & Environment in MS” (GEMS) study
seeks to understand factors that lead to the development of
MS. Researchers analysed the genes and backgrounds of
individuals without symptoms of MS, but with close family
members with MS.
Based on that analysis, researchers identified a group of 40
women at higher risk for developing MS, and 25 women at lower
risk. Extensive neurological testing and MRI scanning uncovered
possible neurological abnormalities in the higher risk group, and
MRI abnormalities in a small proportion of both groups.
Currently they are developing strategies to manage the risk
of MS, but there are not yet any specific recommendations.
Co-author Dr. Phillip De Jager said, “Family members should
be reassured that the vast majority of family members will
not develop MS.”
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.
8 | MSWA BULLETIN AUTUMN 2017

MSWA ENROLS ITS
200TH NDIS CLIENT!
NIGEL CAREY, MANAGER MSWA NDIS BUSINESS DEVELOPMENT UNIT
This month marked an important milestone for MSWA.
We have successfully enrolled our 200th client into the
National Disability Insurance Scheme (NDIS).
This is a proud moment for the organisation and is an
endorsement of the decision to embrace the NDIS as a key
part of MSWA’s future organisational direction.
It is also a tribute to everyone’s hard work!
This great achievement coincides with the confirmation from
the Government that we will be proceeding with a state
administered NDIS scheme (WA NDIS). The WA NDIS will of
course offer all the benefits of the national NDIS scheme.
The decision provides certainty for people with disability about
how and when the NDIS will be implemented in WA. Over the
next few years 38,000 West Australians with disability will
now access vital services and supports through the NDIS and
will have increased choice and control over their lives.
We also have final confirmation of the future roll out details
for the NDIS.
New areas will become eligible for the NDIS as follows:
July 2017:
• Remaining population of South Metro: Armadale, Mandurah,
Rockingham
• Kimberley-Pilbara
July 2018:
• Remaining population of the Wheatbelt and the South West
• Remaining population of Central and South Perth: Fremantle,
Melville, South Perth
• Goldfields Esperance
• North Metro: Joondalup, Wanneroo
All other areas will enter the scheme from July 2019.
In other news, the new NDIS January 2017 trial site continues
to grow rapidly.
This trial site area covers the following areas:
• Bayswater
• Bassendean
• Chittering
• Toodyay
• York
• Northam
The MSWA NDIS team, including health team staff, recently
conducted an information session in this trial site and were
also able to help many people successfully begin their
application process for the NDIS.
Our NDIS team is always available to let you know what the
NDIS means for you, take you through the entire application
process and then help you develop plans which maximise the
supports and services you can receive.
Our key mission is to deliver a very smooth and easy customer
journey for our MSWA Members and NDIS clients.
Please don’t hesitate to contact our MSWA NDIS team
now to further clarify when your area enters the NDIS;
we are here to help! See our details below or email us at
NDIS@mswa.org.au
Please contact any of the following MSWA NDIS team
members for more information on the NDIS:
Mark Douglas: Operations Manager
Email:
mark.douglas@mswa.org.au
Phone: 9365 4824
Christine Richards: Client Relationship Coordinator
Email:
christine.richards@mswa.org.au
Phone: 9365 4867
Pranjal Pawar: Client Relationship Coordinator
Email:
pranjal.pawar@mswa.org.au
Phone: 9365 4810
MSWA BULLETIN AUTUMN 2017 | 9

MSWA SPEECH THERAPY
SERVICES UPDATE
JAMAICA GRANTIS, MSWA SPEECH THERAPY TEAM LEADER
It’s been an exciting start to the year for the MSWA Speech
Pathology team. In the last six months, our team has more
than quintupled in size! We now have five speech pathologists
and a therapy assistant working in the Perth metropolitan
area, and one speech pathologist based in the South West.
Our enthusiastic, hard-working and highly dedicated team
is here to support Members and clients who experience
communication and/or swallowing difficulties brought on by
their MS or other neurological condition.
We often hear our Members say that it’s become harder
to get their words out. Sometimes it feels as if the word is
right there on the tip of the tongue, but it just won’t come,
or somehow the wrong word comes out. At other times, the
right word comes out, but the sounds are not as clear or crisp
as they used to be and it’s harder to be understood. This can
be incredibly frustrating and make conversation with friends,
family and co-workers a real challenge.
We are currently seeking expressions of interest from our
Members who have trouble getting words out as quickly and
as clearly as they used to, and who would like to participate
in a group-based program.
Members of the
MSWA Speech
Pathology team,
from top to bottom,
left to right -
Jamaica Grantis,
Lucy Strom,
Monica Apap,
Stephanie Perkov
Our groups will offer you the opportunity to:
• connect with others who share similar experiences
• learn how MS and other neurological conditions can impact
communication
• learn practical and evidence-based strategies to overcome
commonly experienced communication difficulties
For more information or to register your interest, please
contact our team through reception on 9365 4888.
WEEKEND PHYSIOTHERAPY
SERVICE STARTING AT WILSON
BEN MATHEWS
Did you know that too much sleep is bad for your health? And
most people sleep late on Saturday mornings?
Don’t worry, we’ve got your back. In March this year, the
MSWA Physiotherapy Department opened its doors at Wilson
on Saturday mornings for Members. The weekend exercise
classes run from 900-1200 every Saturday morning; never
more will the nefarious weekend sleep-in impact your health!
We all know that juggling life, work, family, and interests is
already a feat that only a Cirque du Soleil performer will ever
truly master, so we are here to help. And it won’t cost you a
fortune in tuition fees for a place in a French Circus Academy!
This class will combine a
circuit and hydrotherapy
class and is aimed at those
who are unable to attend
Wilson during normal business hours due to work or other
constraints.
Participants need to be confident in the water and
independent getting in and out of the pool. If this sounds
like something that interests you, ask your physio for
more information or contact ben.mathews@mswa.org.au.
Please note this is not a drop-in service, once you’ve
registered your interest we can organise a start date and
conquer the catharsis that is a late Saturday wake-up!
10 | MSWA BULLETIN AUTUMN 2017

PEER SUPPORT GROUPS HAVE
RETURNED FOR 2017!
SARAH LORRIMAR,
MSWA PEER SUPPORT AND HEALTH EDUCATION COORDINATOR
We understand that the role of being a carer is rewarding
but it can also be challenging and stressful. At MSWA
we offer regular carer support groups for people living in
the community who identify as a carer of someone living
with MS.
Meeting once a month, the groups provide an opportunity
for carers to connect with others for practical and
emotional support, as well as receive education on MS and
coping strategies.
The groups are facilitated by MSWA Senior Social Welfare
Officer, Irene Gallagher and MSWA Counsellor, Karen Brown.
There are two groups, one located in Applecross and another
in Currambine.
If you are interested, please contact Irene Gallagher on
9365 4835 or Karen Brown on 9365 4808 to register.
muMS GROUP
SARAH LORRIMAR, MSWA PEER SUPPORT
AND HEALTH EDUCATION COORDINATOR
The muMS group is a peer support group for women living
with MS who are also mothers of young children and/or
are pregnant.
Providing a shared space to talk about motherhood and MS,
the group is facilitated by MSWA Counsellors, Liesl Murdoch
and Jean Hudson. The muMS group is a wonderful opportunity
for mums to discuss their concerns and feelings, learn new
information, develop friendships and enjoy some time away
from the parenting role.
This year there will be guest speakers from the MSWA team
sharing their expertise on issues relevant to our group.
The dates and topics are detailed here. If you have any
suggestions for topics to discuss at the group in the future,
please get in contact.
If you would like to attend the group, you can register
your interest with Sarah Lorrimar 9365 4858 or
Sarah.Lorrimar@mswa.org.au.
Tuesday, 18 April
Continence | Community Nurse, Lynn Reeves
Tuesday, 16 May
WA NDIS | Client Relationship Coordinator, Christine Richards
MSWA BULLETIN AUTUMN 2017 | 11

ARE YOU A PROCRASTINATOR?
JAYNE MAIR, MSWA COUNSELLOR
“Never put off till tomorrow, what you can do the day after
tomorrow.” Mark Twain
Do you, like me and twenty percent of the population, tend to
leave important tasks to the last minute?
I have had many months (ten in fact!), to write this article,
but as the deadline rapidly approached, so did my avoidance
of the task required. It seems I would rather clean my car,
tidy the pantry and perform countless other minor tasks to
avoid doing the important deed all the while increasing my
own stress levels whilst the deadline approached. So why do
we do this to ourselves?
The word procrastination comes from the Latin pro which
means ‘forward, forth or in favour of’ and crastinus which
means ‘of tomorrow’. Procrastination is considered an
irrational delay – meaning that when we choose to put off or
avoid doing a particular task, we do so knowing that we will
be worse off and acting against our best interests.
Typically, people who procrastinate don’t pay bills on time, leave
Christmas shopping until Christmas Eve, miss opportunities to
buy concert tickets, and leave their tax returns to the very last
minute. If it’s not Facebook notifications, it’s birthday reminders,
the Candy Crush Saga, a WhatsApp thread or any other source
of distraction. The opportunities for procrastinating are endless.
(Heyden 2014). A UK based survey identified that smartphone
users check their phone on average 221 times a day which
includes emails, and social media!
Below are some common procrastination thoughts (Maybe
you’ll recognise some!):
“I’ve got to organise my desk/kitchen/laundry etc…. first.”
“I don’t have enough time to do it all, so I will wait until I do.”
“It’s too late to start it now.”
“It’s better to do it when I am in the mood or feeling inspired.”
“It might not be good enough, so why bother doing it.”
“I work better when I am stressed, so I will leave it to the
last minute.”
“Working on it today won’t make any difference.”
“I will miss out on the fun happening now, I can do it
another time.”
“It’s too nice a day to spend on this.”
(Centre for Clinical Interventions, WA)
Of course, they are the things that help us procrastinate but
let’s look at some of the possible reasons why we do it.
• Fear of failure – the person may be very concerned about
how others see them. They may fear being judged. Will it be
good enough? What if I get it wrong?
• Perfectionism – Never being happy with what you produce,
setting yourself very high expectations.
• Fear of success – What if I do such a good job, they will
expect more of me, and they may judge me as more capable
than I see myself.
• Rebellion – One response to having a very strict authoritarian
upbringing, taking back control over what you do.
• Thrill seeking – Waiting until the last minute to experience
a euphoric rush.
• Decision avoidance – Not making a decision absolves
procrastinators of responsibility for the outcome of events.
However, there are costs to procrastinating. A study of college
students in a single academic term identified evidence of
compromised immune systems such as more cold and flu
symptoms, gastrointestinal disorders and increased insomnia
in the students who reported procrastination. (Marano, 2003).
12 | MSWA BULLETIN AUTUMN 2017

If this all sounds too familiar and procrastination is an issue
that is affecting your health and wellbeing, there are numerous
avenues of support available. On the internet you will find
many apps such as Procrastor, Procrastination Hack, Stop
Procrastinating, Finish and even Yelling Mom, which attempts
to regain your attention through various alert noises. Others
focus on more efficient goal setting.
Some apps let you block individual websites, particularly
social media, but all aim to cut off the main avenues of your
distraction. StayFocusd is a productivity extension for Google
Chrome that helps you stay focused on work by restricting
the amount of time you can spend on time-wasting websites.
Once your allotted time has been used up, the sites you
have blocked will be inaccessible for the rest of the day.
Anti-procrastination apps are limited in what support they can
provide and are only an option for individuals distracted by
computers/phones. Some suggest that apps themselves are
a distraction from self-discipline. (Heyden, 2014).
An alternative approach is a self-directed online course
through WA’s Centre for Clinical Interventions – ‘Putting Off
Procrastination’. The seven modules include information,
worksheets, and suggested exercises or activities. This can
be found at cci.health.wa.gov.au/resources.
Or, you may choose to talk to one of our MSWA counsellors
regarding your health and wellbeing strategies including
stress management, attend one of our workshops on
Mindfulness or other psychoeducational topics.
Don’t put it off! Help is available.
References:
www.theprocratinationequation.com
www.cci.health.wa.gov.au
Heyden, T. (2014) The Much Delayed War on Procrastination.
BBC News Magazine. Published online 11/10/2014
Marano, H.E. (2003) Procrastination: Ten Things to Know.
Psychology Today; Published online 23/08/2003
Une baguette.
S’il vous plait,
mate.
Fold, Pack, Travel
1300 622 633 www.scootersAus.com.au
SCA20535
MSWA BULLETIN AUTUMN 2017 | 13

Rob’s story
14 | MSWA BULLETIN AUTUMN 2017

My life has been a series of life changing moments.
One of the firsts happened when I met my Australian
wife, Sharon, on a tour of Europe when I was 22
years old. Two years after we met, I uprooted my life
in Canada and moved to Western Australia’s South
West to start our lives together. We got married in
1995 but not even a year into our marriage came the
next life changing moment - my multiple sclerosis
(MS) diagnosis.
I didn’t know what to expect or exactly how MS was going to
change my life. A week after my diagnosis, I visited MSWA
to speak with one of the nurses to find out more. It just so
happened that we arrived on the same day of their Annual
Member Christmas party. For someone who had just been
diagnosed, it probably wasn’t the best introduction to MS. There
were about 50 to 60 people there in various stages of MS. I met
a guy in a wheelchair with slurred speech who tried to talk to me
and thought to myself, this is how I’m going to end up.
But that’s the thing about MS. You never know how it’s going
to affect you. I bet on it having a minimal impact on my life and
got on with my life. I never thought that being diagnosed with
an incurable degenerative neurological condition would affect
positive change in my life but that’s exactly what happened.
MS opened doors for me I never, ever imagined and so many
things that have happened in my life since my diagnosis have
been as a result of having MS.
One of the first things MS changed about my life was my career.
I worked as a chef at one of the top restaurants in Albany but
the long hours and the physically demanding nature of the job
meant MS symptoms like vision loss, heat intolerance and
fatigue reared its ugly head. Eventually, I decided I could no
longer handle the heat and got out of the kitchen.
I found a new job working in a disability employment
organisation and threw myself heavily into the MSWA Outreach
Group. I became president of the group in only a few years’
time and not long after, in 2000, MSWA asked me if I wanted
to carry the Olympic Torch. I was the only person with MS to
do so in WA. It was a thrilling once in a lifetime experience.
In the next couple of years after that, Sharon and I had more
life changing moments when we added to our family with
Connor, 16 and Mackenzie, 14. My children have always
known about my MS and are very supportive. They are my
motivation to stay positive, active and engaged. I want to
show them that even with barriers, you can live life to the
fullest and do what you want.
So in 2012, when a gold medallist Paralympian called me out
of the blue and said, “I understand you sailed 20 years ago,
don’t walk well and have MS. Would you like to be a part of
a 3 man sailing team and help me get to the Paralympics?” I
said sure. By that time, MS had affected my balance and my
ability to walk and I was using a crutch full time.
MSWA were really supportive and together with members of
the outreach group, they helped us in raising money to get to
the International Association for Disabled Sailing competition
in Canada. Out of 18 world class competitors, we came in
12th. Not bad for our first time. We continue to sail together
regularly and are hoping to get to the Paralympics in 2020.
I never would have changed careers, I never would have had
carried the Olympic Torch, never would have had the chance
to compete in sailing internationally and do so much more
if it hadn’t been for MS. I consider myself blessed in a way
that I have more opportunities because of disability than
other people.
My experiences have inspired me to want to help those who
are disadvantaged in society. I completed my degree in social
work in 2015 and since then I’ve been working as an advocate
for people with disabilities. I’ve been given a platform and I
think I have a great story in life. And I want to inspire.
I’ve now been living with MS for 21 years and despite my
positivity, there’s no denying that MS makes things harder.
Putting on pants is harder, putting on a pair of socks is harder,
putting on your shoes is harder and everything will continue
to get harder. And it’s not just physically but mentally too.
As you become more disabled, it’s a mind shift to go to one
crutch and then to go to two crutches. It takes time for you to
get used to that. But I roll with it because what else is there
but overwhelming despair if you open that door and think
about all that could go wrong with you.
My family is my rock. Sharon knows when I’m not on my game
and she’ll tell me it’s going to be okay, we’ll figure this out. And
my children are always there beside me when I need a hand.
MSWA has been great. What they’ve done for me is taken
someone who is scared of the unknown and the future and
said, we’re going to support you in your journey throughout
life. That support is invaluable and knowing they have my
back is huge for me. I know I can always rely on them.
Over the years, I’ve accessed their services such as
physiotherapy, massage, the outreach group and as my
MS progresses I find myself needing MSWA more. Life is for
living and MSWA enables me to live my life to the best of
my abilities.
MSWA BULLETIN AUTUMN 2017 | 15

SPECIAL DIETS AND
MULTIPLE SCLEROSIS
DR LUCINDA BLACK, MSWA POSTDOCTORAL RESEARCH FELLOW,
SCHOOL OF PUBLIC HEALTH, CURTIN UNIVERSITY
People diagnosed with MS are often motivated to make
dietary changes in an effort to reduce disease progression. A
Google search of diet and MS reveals an excessive amount of
information about what foods to increase and avoid if you have
been diagnosed with MS. However, the advice available online
is not necessarily based on scientific evidence, and some
dietary changes may be costly and hard to implement, with
little or no benefit for people with MS. At worst, some dietary
changes may result in poor intake of important nutrients.
There are a number of special diets that are promoted for
people with MS, including (amongst others) the Swank diet,
the McDougall diet, the Paleo diet, and a gluten-free diet.
The Swank diet encourages people to substantially reduce
their saturated fat intake. Foods to avoid include processed
foods that are high in saturated fat and hydrogenated oils,
full-fat dairy, and red meat for the first year (1 serve per week
thereafter). Permitted foods include fruit and vegetables,
wholegrains, nuts and seeds, white-meat poultry, white fish,
oily fish (3 serves per week), and eggs (3 per week). The diet
suggests taking a cod liver oil and multivitamin-multimineral
supplement daily. Although many of these recommendations
are commendable, some aspects of the diet may be
unnecessarily restrictive, such as avoiding lean red meat
(a good source of protein, iron, vitamins and minerals),
limiting eggs (which contain valuable nutrients, including
protein, omega-3 fatty acids, antioxidants and vitamins), and
restricting certain dairy products (a good source of calcium).
The McDougall diet is a vegan diet based on starchy
vegetables, fresh or frozen fruits and vegetables, and
wholegrain products. Animal foods (including red meat,
poultry, dairy products, eggs, and fish) are excluded. By
excluding some important food groups, this diet could
potentially result in inadequate intakes of protein, iron, vitamin
B12, calcium, vitamin D and omega-3 fatty acids.
The Paleo diet is a modified version of the diet that would
have been consumed by our ancestors in a hunter-gatherer
lifestyle. Highly processed foods are avoided, and intakes
of game meats and plant-based foods (with the exception
of grains) are increased. Although the guidelines vary, most
Paleo diets advocate avoiding dairy, eggs and grains.
The Wahls protocol is a modified version of the Paleo diet,
and recommends green leafy vegetables, coloured fruits and
vegetables, sulfur-rich vegetables (eg broccoli, cabbage, kale,
garlic and onion), omega-3 supplements and animal protein.
Gluten-containing grains, dairy and eggs are excluded.
There are some benefits to the Paleo diet, including avoiding
processed foods and increasing fruit and vegetable intake;
however, the diet excludes some nutritious foods, including
wholegrains, dairy and eggs.
A Gluten-free diet is currently the only treatment for people
with coeliac disease – an autoimmune disease that causes
small bowel damage – and is sometimes promoted for
people with MS. The diet excludes all products derived from
gluten-containing grains, namely wheat, barley, rye and oats.
Gluten-free grains/seeds include corn, millet, rice, amaranth,
buckwheat and quinoa. Following a gluten-free diet is
challenging and can be costly if gluten-free substitutes are
purchased. Some gluten-free products are highly processed
and contain substantial amounts of salt, sugar and fat.
16 | MSWA BULLETIN AUTUMN 2017

High-quality studies on diet and MS are currently lacking, and
there is little evidence on which to recommend any special
diet for reducing the disease progression of MS. Although
there is some evidence for a benefit of the Swank diet in
reducing relapse rate and disability in MS, the studies to date
have been of poor scientific quality and, as such, the evidence
is inconclusive.
New research to investigate whether certain diets, foods and/
or nutrients could help to reduce disease progression in MS is
under way in Australia and overseas.
Currently, the best available dietary guidelines for people with
MS are the Australian Dietary Guidelines. These guidelines
suggest enjoying a wide variety of nutritious foods from the
five food groups every day:
1) vegetables/legumes/beans;
2) fruit;
3) grains, mostly wholegrains;
4) lean meat, fish and/or alternatives; and
5) dairy products.
Intake of foods containing saturated fat, added salt, added
sugars and alcohol should be limited, including biscuits,
cakes, pastries, pies, processed meats, commercial burgers,
pizza, fried foods, potato chips, crisps and other savoury
snacks. Intakes of confectionery, sugar-sweetened soft
drinks and cordials, fruit drinks, vitamin waters, energy and
sports drinks should also be limited.
Australian Guide to Healthy Eating
Enjoy a wide variety of nutritious foods
from these five food groups every day.
Drink plenty of water.
Grain (cereal) foods,
mostly wholegrain
and/or high cereal
fibre varieties
Penne
Lean meats and
poultry, fish, eggs,
tofu, nuts and seeds
and legumes/beans
Use small amounts
Quinoa
Polenta
Fettuccine
Chickpeas
Muesli
Lentils
Mixed nuts
Wheat flakes
Red kidney
beans
Red kidney
beans
Red lentils
Chickpeas
Vegetables and
legumes/beans
Fruit
Milk, yoghurt, cheese and/or
alternatives, mostly reduced fat
Only sometimes and in small amounts
The Australian Guide to Healthy Eating is a visual
representation of the Australian Dietary Guidelines,
and serves as a simple reminder about how to
maintain a healthy diet.
Evidence suggests that Australians need to eat more:
• vegetables and legumes/beans
• fruits
• wholegrain cereals
• reduced fat milk, yoghurt, cheese
• fish, seafood, poultry, eggs, legumes/beans,
and nuts and seeds.
• red meat (young females only)
and eat less:
• starchy vegetables
• refined cereals
• high and medium fat dairy foods
• red meat (adult males only)
• food and drinks high in saturated fat,
added sugar, added salt, or alcohol
(www.eatforhealth.gov.au)
MSWA BULLETIN AUTUMN 2017 | 17

PROTECT YOURSELF
AGAINST THE FLU
Protect yourselves and others
Annual flu vaccination, for everyone six months of age and
older, is recommended as the first step in protecting yourself
and others against the flu. It reduces the chances of catching
and transmitting the flu. This is especially important for
people at risk of complications arising from influenza and
those in close contact with at-risk people.
Influenza is highly contagious and spread through coughing
or sneezing virus droplets into the air. Others breathe them
in and become infected. It’s important to remember that
touching contaminated surfaces (including hands) and then
touching your mouth, nose or eyes can also lead to infection.
You can minimise the spread of the virus during flu season
by practicing good household and personal hygiene, avoiding
close contact with others if you or they are ill, and covering
your mouth and nose when coughing or sneezing.
The bad news
• Influenza viruses can survive an hour or more in enclosed
environments, which means contaminated respiratory
secretions, can be picked up even without someone
coughing or sneezing near us.
• Even before we show symptoms, we can be shedding the
flu viruses, infecting others around us.
• Influenza viruses are characterised by constant evolution;
this means they can be a new threat every year.
The good news – you can protect yourself and others
by practicing good cough and sneeze etiquette such as:
• turning away from other people;
• covering your mouth and nose with a tissue or your sleeve;
• using disposable tissues rather than a handkerchief;
• putting used tissues into the nearest bin; and
• washing your hands or using alcohol hand rub as soon as
possible afterwards.
Hand washing is the single most effective way of killing
the flu virus and limits the spread of the flu and other
respiratory infections.
Wash your hands with soap and water or alcohol-based
product (gels, rinses, foams) that don’t require water:
• after coughing, sneezing or blowing your nose;
• after being in contact with someone who has a cold or flu;
• before touching your eyes, nose or mouth; and
• before preparing food and eating.
Stop the spread in your household
Flu viruses can survive more than eight hours on hard
surfaces. You should regularly clean frequently touched
surfaces such as door handles and benches. Flu viruses
can be inactivated and removed with normal household
detergents. Keep personal items such as towels, bedding and
toothbrushes separate. Don’t share cutlery and crockery, food
or drinks.
18 | MSWA BULLETIN AUTUMN 2017

WEIRD SISTERS
ROS HARMAN
“Weird sisters, hand in hand,
Posters of the sea and land,
Thus do go about, about.”
A strange noise woke me, a sound like the guttural barking
of a seal. As I emerged from misty dreams of crashing waves
on a sea shore it took me a few disoriented moments to
remember I was in Central Queensland, far from any beach.
The ‘seal’ I had heard was a bush turkey, and its barking was
now accompanied by the high pitched whistles of a couple of
rainbow lorikeets. The morning chorus had begun.
My younger sister moved to Queensland ten years ago, and
has built herself a new life with a new partner, a landscape
gardening business, and now a new house. She has returned
to Perth every couple of years for a short visit, but this year
she decided to host Christmas for the family at her house. For
my two older sisters and their partners it was just another
stop in their itinerary, having reached the place in their lives
where they regularly go “about, about”. For me though this
trip to Queensland was an adventure requiring months of
planning and preparation, and the girding of loins to gather
the requisite courage.
I’ve done an excellent job over the last decade creating a
comfortable life for myself here in Perth. I have my mobility
sorted with wheelchairs and a hand controlled car and taxi
vouchers. I have a house festooned tastefully with door ramps
and grab rails artistically placed in a look I call ‘disability chic’.
I have my weekly routines between my home and a few safe,
known places where the toilets are accessible, and a few
occasional more adventurous forays to a movie, theatre or
shopping centre to add a little spice to my otherwise settled
existence. It was challenging to contemplate a trip interstate
involving plane flights, airport stopovers and unknown
accommodation where I might be forced to call on the
assistance of others. Nevertheless, I really didn’t want to miss
out so I decided to go. Once the decision was made I rallied
the troops and made plans.
The MS Society of Queensland helped me source some
essential bits of equipment which would make my sister’s
house work for me. I spent an hour on the phone with someone
at the airline ensuring that I and my wheelchair would make
the journey comfortably, including being able to access the
tiny little toilet on the plane. I bought some suitably tropical
clothes for what I imagined would be hot and humid weather. I
even used the weekly craft group at MSWA’s Wilson outreach
centre to make myself a new dress for Christmas, with the
help of the hand control sewing machine they have there and
a staff person to pick up the pins I dropped.
All my preparations paid off, and we had a splendid Christmas,
complete with large quantities of food and bonding over
mango daiquiris. The weather was pleasant, a constant
wind keeping the humidity at bay. I met Harry and Buffy, the
rainbow lorikeets, who deigned to perch on my hand while I
fed them their morning sunflower seeds. I was taken for a
bumpy ride around the property on a golf buggy to admire
the work my sister and her partner have done in establishing
their business.
But Christmas would not be complete in our family if my
sisters and I did not participate in some dramatic performance
of an amateur and farcical nature. So it was that one
evening we ended up robed in black veils, dancing around a
cauldron enacting the witches’ scene from Shakespeare’s
play Macbeth, chanting that famous recipe:
“Double, double, toil and trouble
Fire burn and cauldron bubble.
Eye of newt, and toe of frog,
Wool of bat, and tongue of dog...”
The audience of menfolk and offspring unanimously declared
the performance a roaring success. As my brother-in-law
pronounced, “You truly are weird sisters.”
MSWA BULLETIN AUTUMN 2017 | 19

THAT’S LIFE
WITH NARELLE
NARELLE TAYLOR
These are days of miracle and wonder. The Australian of
the Year won the award for his work in the field of stem cell
research. The award ceremony caught my attention and
I heard Professor Alan McKay-Sim, the winner, say that he
will continue his work in the stem cell field because it’s so
important to people who are disabled and people who are
diseased. I thought I’m both! - disabled and also diseased.
I will offer myself for work in a trial he conducts. I’m a
prime candidate.
I might be in the group that doesn’t get the placebo and won’t
mind at all being of assistance when he’s in contention for
the next award. It’s what I’ve been hoping for the past twenty
years - a cure, at long last. Maybe, using stem cells, I won’t
require a couple of decades of therapeutic physiotherapy to
return me to my pre-MS condition.
I went to a show this month at the Fringe Festival. I admired
the superlative acrobatics and the results of hours of practise
by the stars of the show. I wondered briefly what age bracket
the acrobats are in. I imagined how I’d love to have their job
and how good I’d look in the Lycra and sequined costume I’d
be wearing when the stem cell thing gets under way and I am
amazingly restored to Fringe Festival nick.
I’ll have to do something about the old age thing though. I
won’t worry about that until then because I need the brain
space now to be able to think of everything I’m currently
thinking about. I don’t worry, it’s so boring. I am much happier
thinking about ‘alternative facts’ and how the world could be
a Nirvana where I would be blissed out.
My mother’s older sister, Aunty Audrey, celebrated her ninetyninth
birthday last month with grace and style. My father, last
year, broke the record for the 90 years, 200 metres freestyle
swimming event, so it appears that I have genes for longevity
from both sides of my family. Consequently, I’ve decided that
I’d really like a cure for my MS since it looks like I’ll be around
for longer than most.
The fellow residents here at my Aged Care Facility are older
than me and I can just tell they’re not interested in a career in
the Fringe Festival. A lot of them spend their whole day trying
to find a way out so they can go home. I think that is very sad
for them. It’s as if they hadn’t decided to leave their home in
the first instance and then, hadn’t decided to come here.
For me, I miss so many things about home but I really
appreciate all the caring that this place provides. I just couldn’t
manage without help. I’m so glad moving here was a decision
that I made. It wasn’t easy I’ll admit, but so many residents
seem to think they’re living here because their family ‘turned’
on them.
They spend years in that frame of mind, then dementia rears
its ugly head and they forget what they wanted to get out of
the place for anyway. One thing my sojourn here has taught
me is that my daughters are very considerate of me and that
if they end up needing care themselves, they should make
arrangements while they’re still able.
I noticed a falling off in the number of people we called friends
when I was first diagnosed but moving into this place really
thinned them out. I was widowed and profoundly ‘MS-ing’.
Not many so-called friends seemed keen to act as a bridge
over troubled waters. So I’ll just have to be cured and then
I’ll be well and fit enough to throw rocks on their roofs. Yay!
It won’t be too much longer, either, before they’re looking for
care for themselves…in a place like this.
20 | MSWA BULLETIN AUTUMN 2017

THE FINE ART OF A
WONDERFUL RELATIONSHIP
DR ANDREW E ONG
We often try to live our lives backwards. For instance, when
we are of working age we go about the business of acquiring
more money and material possessions in order to do whatever
we want so that we will become happier. The best way to
make this desire, often obsession really, work however is the
other way around.
First we must go through the process of finding out who
we really are — our authentic selves. Then we can do what
we really want to do which is to build a loving relationship.
Happiness, wealth, peace of mind and money will surely
follow and then you can reap the benefits.
But these things don’t just come easily. Oh no! To make this
loving relationship work first you must create it. Little things
don’t mean a lot, they mean everything. Never take each
other for granted, continue to hold hands, and each day find
the time to say “I love you”.
You must learn to compromise and forgive each other’s
faults, especially your own. Share your joys and sorrows, and
especially share a common goal, objectives, and most of all,
develop a set of core values to share.
Regularly shower words of appreciation on each other, mean
them, and demonstrate genuine gratitude in thoughtful ways.
Give each other the capacity to grow and learn in a warm and
caring atmosphere.
For it is the common
search for all that is good
and wonderful in this
world, and especially in
each other, which will
sustain your relationship.
Who else can you call
“honey” every day?
For in the end it is not being married to the most beautiful and
right person, but being the most beautiful and right person
yourself. Only then can you make that other person the most
beautiful and the best person there is in a loving relationship.
WHY?
On the street I saw her, in a thin and tattered dress.
Cold and shivering, hungry and her hair in a mess. In anger
I yelled silently, “Why does God allow this? Why doesn’t He
do something?” He said nothing for a time. Then one night
out of the blue, blessing me with wisdom, a voice said,
“I did! I made you!”
MSWA MASSAGE
COMES TO GERALDTON!
EMILY-JANE WAR AND RHIANNE ELLIOTT
It’s been long awaited but we are very excited to announce we
have finally introduced a massage therapist to our small but
growing MSWA team in Geraldton and the Midwest region!
Nicola Weir is a local lady, who completed her Certificate 4
in Massage Therapy at the Geraldton TAFE in 2011. She has
worked in mixed settings in the past, so is a great asset to our
team of two physiotherapists providing services to our local
Members in Geraldton.
Massage will cost financial Members only $4 per half
hour session or $8 for an hour.
Nicola is working on Mondays from 9am – 12pm
and this MSWA subsidised service is available to all
financial Members.
Bookings are essential. Please contact us on
0439 503 296 or email Rhianne.Elliott@mswa.org.au
or Emily-jayne.warr@mswa.org.au to organise your
appointment.
MSWA BULLETIN AUTUMN 2017 | 21

MSWA VOLUNTEERING
NEWS
DAWN BURKE, MSWA COORDINATOR OF VOLUNTEERS
“Rain, Rain, go away, come again another day,” unless you
are like me and love the rain and the cool weather. I have even
worn my uggies on a few days with my tracky dacks. That is
unheard of and utterly outrageous for this time of the year!
How are you all? Welcome back to MSWA for another year.
I trust you all survived the Christmas period and the back to
school traffic, and have now settled into 2017.
A quick recap on late last year. The International Volunteers
Day went off without a hitch. It was sunny and breezy all at
the same time. The afternoon was enjoyable with some lovely
nibbles and drinks floating around, not literally, but as we
know, with the mass of rain we received it could have been
a possibility.
The Members, volunteers and staff Christmas Party was a
hoot! This was such an enjoyable event and I loved being in
an environment which incorporated volunteers, Members and
staff all in the one room. For those of you who didn’t go, you
missed a fantastic day and you missed the star of the show,
me, as I pranced around dancing and waving my ribbon with
the odd bubble blowing in there. Thank you to all the staff who
organised the day, it ran smoothly as always. A very special
thanks to Donna Hill (MSWA staff), and the other staff on the
planning committee, for all the behind the scenes organising.
It is a huge job and as usual was done extremely well.
An event such as this, as I always like to highlight, doesn’t
happen with MSWA staff alone. QBE volunteered their staff
once again this year and they truly make a huge difference to
the event, especially with the setting up, packing up and raffle
ticket selling. Thank you, QBE! Your volunteering efforts year
after year at this event are truly appreciated. Another special
mention goes to one of our own volunteers, Kevin Mosey.
Kevin filled the boots again this year and happily jumped into
the role of Santa. Thank you Kevin, I imagine it would have
been very hot in your little red number.
During the Christmas Party in Perth and in Bunbury was the
perfect moment for two of our longest serving volunteers,
Sister Marie Moriarty and Marie Harris, to receive their Local
Government 25 years Volunteering service awards. These
awards were presented by Marcus, and even though they
knew I was nominating them (and that’s all they knew) they
were pleasantly surprised on the day. Well done and thank
you both! 25 years is an awesome achievement.
Marcus presenting Sister Marie with her award.
We are so blessed here at MSWA to have the volunteers that
we do. Apart from the occasional position that needs filling,
we have many dedicated and long standing volunteers that
come along week in and week out and many have been doing
so for years.
It’s a sign of a great organisation when some of your volunteers
have been here as long as the furniture and longer than some
staff! So thank you for your dedication. That doesn’t mean
to say we don’t appreciate our new or short term volunteers,
because we do. The diversity of people volunteering for
MSWA makes the organisation what it is today. It doesn’t
matter if you have been here a long time, a short time, or are
just starting your sentence (just kidding!). You are all truly
appreciated and we are proud to have you share our journey,
no matter the distance travelled.
22 | MSWA BULLETIN AUTUMN 2017

MSWA Annual Member Christmas Party.
I was very fortunate to travel to Bunbury and check out the
new MSWA Community and Health Services Centre. It is a
beautiful centre and extremely roomy for all our Members. The
staff are also loving the space and amenities after a long time
being in cramped and unsuitable accommodation. As always,
it was lovely to catch up with some of the Bunbury volunteers.
While there, Member Brett Johns, also a long-term volunteer,
was entertaining the group with his ukulele. The ambience
was enjoyed by all as we joined in with a sing-along.
Treendale Gardens was also a stop-off point on my way
home. I really love dropping in there as I often know some
of the Members who are enjoying their stay at respite. It’s
lovely to have a bit of a chit chat. Treendale has a couple of
volunteers assisting around the centre. I didn’t get a chance
to catch up with them, but I know you are out there and your
time is truly appreciated.
The beginning of a new year is a busy time for people wanting
to volunteer. Some people retire, some have made new year’s
resolutions to give back to the community and some have a bit
of free time to give. Whatever the reason, we here at MSWA
are always looking for volunteers, and we try to accommodate
people, where possible, and find a suitable position.
If our Members Services Departments cannot assist, our
Events team are always looking for volunteers for various
activities throughout the year. Any time given to MSWA is
always highly valued; no matter how much and for how long.
We understand this is the nature of volunteering and we also
understand that you have other commitments.
Volunteering is a fantastic opportunity for everyone at all
levels to gain new skills, develop friendships and to assist
others less fortunate than themselves.
Well that’s all I have for now. I cannot thank our volunteers
enough, I welcome you all back and I wish to extend this
welcome to any new volunteers who jump on board along the
way. May you all keep well and stay safe and let’s see what
the year brings.
Take care and speak soon.
QBE volunteers at the MSWA Christmas party.
MSWA BULLETIN AUTUMN 2017 | 23

SOUTH WEST
Regional Round Up
The latest
news from
the South
West
BUNBURY COMMUNITY AND
HEALTH SERVICES CENTRE OPENS!
SUE SHAPLAND, MEMBER SERVICES GENERAL MANAGER
Well after much anticipation and amid great excitement,
the new Community and Health Services Centre in Bunbury
opened in December! Can I tell you it was well worth the
wait too?
We have had an Outreach Group in Bunbury for over 20 years
and they have moved several times over these years. I will
never forget the old Stone Street premises, which was in
place when I joined MSWA - an old weatherboard house, with
sloping floors, in a light industrial area. It flooded regularly in
winter and was opposite a “house of ill repute”, as they used
to say. Since 2003 we have relocated the group twice and
now they have a home for good!
With increased demand for services, and the impending NDIS,
we have invested in more staff over the past 12 to 18 months
and they have been patiently sharing one office in the Ramsay
Street house, working out of Treendale and other venues as
they waited for the new building. To say they are happy with
their new home is a vast understatement.
Of greater importance is the venue and what it offers our
Members and non-MS clients now and into the future. The
physio gym is amazing with new equipment, lots of natural
light, and room to move around the gear safely making this a
great place for Members to go through their paces.
24 | MSWA BULLETIN AUTUMN 2017

The meeting area is huge! It will seat 100 theatre style, and
can be sectioned off to allow concurrent events. This provides
the Outreach Members a roomy and inviting venue and
provides lots of scope for educational and group workshops.
A small kitchen allows for some light refreshments to be
made on site.
We have three consulting rooms, each a different style
to meet varying needs, a three-bed massage room plus
excellent toilet and bathroom amenities. There are six shared
staff offices housing the various local teams.
The building is really inviting and the decor and fittings all
modern and new. MSWA has funded the purchase of the
block and the build; and the building has been nominated for
a Master Builders Award.
Senior Manager Andrea Taylor has played a major role in
the design and project management and Sandra Wallace
(OT Manager) and Liz Stewart (Manager Fern River) have
done an amazing job in sourcing and supervising the fitout
requirements along with Alison O’Sullivan, the physiotherapist
in Bunbury who enjoyed fitting out the new gym. I would like
to thank everyone involved and the local staff who have all
been very supportive throughout.
This provides us with great confidence as we now move
into final planning for the North Metro hub and high support
accommodation which will get under way by mid-year.
TREENDALE
GARDENS
MAKEOVER
PAULA KENNEDY
Treendale Gardens is very proud and excited to
announce that the residents communal area has had
a wonderful makeover! We are sure you would agree
that it now looks more modern and homely. It is being
enjoyed and loved by all the residents and staff.
Many hours of planning and hard work went into this
project, with Andrea Taylor, Sue Shapland, Linda Kidd,
and Marta the interior designer, planning to ensure the
area looked as welcoming and comfortable as possible
for all to enjoy.
Since the refurbishment, more residents are spending
time there reading, watching TV together and joining in
the games and other activities.
Kate, Di and Wendy enjoy games and a
coffee morning with Angela our Recreation
Support Worker.
MSWA BULLETIN AUTUMN 2017 | 25

ALBANY OUTREACH NEWS
CAROLINE CLARKE-SMITH, MSWA RESOURCE COORDINATOR
After a busy year, we were all grateful for a Christmas break
but now we are back into it again!
We have welcomed some new staff joining our small team,
including a part-time occupational therapist (OT), Anne, who
is now working out of our Albany office. Anne has been
kept busy with assessments and equipment queries as well
as answering many other questions. This is new and very
exciting for our Albany Members, our own local OT!
We also welcome Billie to the team as our new MSWA
Physiotherapist. Billie also has been busy with assessments
as well as exercise programs.
If you are in need of some physio or exercise advice
please give her a call at the office on 9841 6651 and we
can pass on the message.
Another new face in the Outreach is Rita Underwood who
is filling two roles – Community Coordinator and Support
Worker. Come along and welcome our new staff and check
out the growing range of services we can provide.
Outreach has been busy preparing for the annual MSWA
Albany Swim in March. A big thank you to all those who have
volunteered to help raise money and awareness as it would
not happen without your help.
We have also now realised that we have some ‘puzzle nuts’
in our group so if you love Scrabble, we have a game every
Friday along with number and picture puzzles, and the
occasional quiz to strain (or exercise), your brain.
We look forward to having MSWA staff visit from Perth
and the South West, to speak on a variety of topics such
as counselling, welfare and speech pathology. If there
is something else you would like covered, please let
us know. Additionally, we are hoping to organise a few
outings for Members so if you have an idea for a place to
visit, give us a call.
We will be hosting an update on MS research and current and
imminent therapies so stay tuned for more details.
FIRST ALBANY STAFF CHRISTMAS
FUNCTION HELD IN DECEMBER 2016!
GAIL PALMER, MSWA MANAGER INDIVIDUAL OPTIONS
Our staff in the Great Southern area has been slowly but surely
growing over the last three years which is great news for our
local Members. We felt Christmas was a real opportunity to
have the staff come together and as you can see, they are a
happy looking crew!
If you live in the Great Southern area and would like to speak
with one of our staff, please ring the MSWA office at Lotteries
House on 9841 6651 and leave a message and we will get
back to you as soon as possible.
26 | MSWA BULLETIN AUTUMN 2017

BUSSELTON OUTREACH NEWS
BUSSELTON OUTREACH NEWS
NICOLA RYAN, MSWA SENIOR OUTREACH COORDINATOR
The first meeting of the new Busselton Outreach Group was
held at the Busselton Community Centre on 14 February.
It was very well attended and a wonderful start for the group.
The venue was perfect with a lovely bright sitting area,
comfortable chairs, easy access for all amenities as well as
a huge car park. Special thanks to Megan, the local MSWA
Physiotherapist for sounding out this great venue!
Dhyana, the MSWA South West Community MS Liaison Nurse
had a small table set up where she could check on Members’
blood pressure as well as answer their questions. Support
staff from the other departments were also on hand to give
their support to Members.
Some Members who said they had felt a little nervous about
attending were soon laughing and mixing with others as
everyone was very welcoming. Morning tea was enjoyed
by withal, with lots of new ideas being discussed over a cup of tea.
WILSON OUTREACH NEWS
NICOLA RYAN, MSWA SENIOR OUTREACH COORDINATOR
Wilson Outreach enjoyed a lovely 2016 that ended as usual
with a lot of fun! As you may have read before, we often spend
time virtually travelling around the world. November was filled
with wonderful Hawaiian themed entertainment and activities.
We made coconuts, painted hibiscuses, unscrambled word
jumbles, tried the tongue twisting challenge and danced
around in hula skirts!
Our lovely friends at Duo 41, brought their ukulele playing
friends to Wilson to serenade us with dulcet tunes. What a
treat to have such talented players perform their unique talent
WILSON live for us! We wrapped OUTREACH things up with a good NEWS old Luau; a
traditional Hawaiian feast, where staff and Members enjoyed
a beautiful outdoor BBQ lunch.
December rolled on and our Christmas party was once again
held in Como with a full house! Many staff were up on stage to
entertain us throughout the day and their special efforts were
greatly appreciated. Everyone really enjoyed the party and
Santa paid us a visit too! Once again, the QBE staff volunteers
helped with set up, serving and pack up. They are legends!
We surveyed our Outreach Groups attendees regarding the length
of closure over the Christmas period and based on the results,
most centres shortened the holiday break period. Most re-opened
this year a week earlier than usual. Attendance numbers were a
little low, however, we are now well into the swing of things.
As we carry on the ’travelling’ tradition into 2017, February has
been about exploring Italy. The food (not to mention the wine!), the
architecture, history and the fashion! What a rich culture! I’m not
Plans for games, quizzes,
educational talks as well as
visiting guest artists soon
had the Members buzzing
with excitement as to what they could expect at their
monthly meetings. The next one was held on 14 March.
If you are reading this and live in Busselton or surrounding
areas, please come and see us. If you have any questions
about the group, you can call our Wilson Office on 9365 4888.
We now have quite a team based in Busselton with
physiotherapists, occupational therapists, a masseuse, a
counsellor and welfare officer based in Bunbury.
Our MSWA staff are here to help and don’t forget the
WA NDIS first trial site began in Busselton so if you
are under 65 and haven’t registered with the scheme or
don’t quite understand what it all means, contact our
NDIS Team at NDIS@mswa.org.au and they will be happy
to provide you with essential information and support.
sure a month is long enough!
We have made our own pasta
and pizza, had a chocolate and
cheese tasting day, planted
basil and stimulated our senses
with aromatic coffee beans!
Much fun was had competing
in the traditional pastime of Bocce in our beautiful outdoor area.
Which brings me to mention our recent outdoor renovations!
Using our raffle fundraising money, we installed café style blinds
to enclose the patio, with the hope also of weatherproofing the
area. Wall fans are now being sourced to help keep air circulating
and providing greater comfort for Members whilst outside.
Our long-time volunteer gardener, John, has rejuvenated our
large raised garden beds, ready for new harvests this year. So
far, we have planted a lovely range of herbs for our new cook,
Justine, to work her magic with!
We also have a new worm farm that has been donated from
a staff member, to go with the one we have that was donated
by Bunnings. Pretty soon we will have the healthiest veggie
patch in all of Perth!
We always welcome new Members to come visit us and
participate in social interaction and activities. We have
a wide variety of facilities, with something for everyone,
even if it is just a cuppa! Please contact me, Nicola Ryan
at Nicola.ryan@mswa.org.au, should you wish to pop in
and see what it’s all about.
MSWA BULLETIN AUTUMN 2017 | 27

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