Bulletin Magazine Spring 15

ulletin
The Official Magazine of the MS Society of WA | mswa.org.au
Shannon Tori, an MSWA Member, was the highest fundraiser at the 2015 Step Up for MS event, raising $10,560.
She is pictured here with MSWA President George Pampacos and our Mascot Bosko.
Spring 2015
Technology to enhance vision
What is a relapse?
Non driver’s guide
MSWA Annual Dinner Auction

Inside | Spring 2015
Letter from the Editor
Dr Greg Brotherson
The Multiple Sclerosis
Society of WA (Inc.)
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,
Gail Palmer: 9365 4851
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
9 Ramsay Street 9791 2472
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,
Libby Cassidy, Sandra Wallace, Narelle Taylor,
Leonie Wellington, Bhavna Jagtiani, 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.
Letter from the Editor 3
From the desk of the CEO 4
A message from the General
Manager – Member Services 5
Letter from the Board 6
Supporting the newly diagnosed
and our low support needs Members 7
Round-up of research and
other items of interest 8-9
Optic Neuritis 10
Technology to enhance vision 11
What is a relapse? 12-13
MS Nurses Australasia (MSNA)
Outstanding MS Nurse for the
Year Award 13
WA Trial Sites Update - August 2015 14
Uncertainty and peace -
can they hold hands? 15
Getting around Perth:
a guide for the non-driver 16-17
That’s life with Narelle 18
MSWA to build outreach and
services centre in Bunbury 18
What we leave behind 19
Volunteer Update 20-21
The law of detachment 21
MSWA Annual Dinner Auction 22
MSWA Commitment Awards 22
Chevron City to Surf for Activ 23
EveryWoman Expo 23
MS Mega Home Lottery 23
Pictures of MS 24
Treendale Gardens respite
and holiday unit 25
Scrooge’s Christmas 25
Wilson Outreach News 26
Southside Outreach News 26
Beechboro Lodge:
News from north of the river 26
Bunbury Outreach News 27
Albany Outreach News 27
NURSING Our nursing team is usually the first point of contact, after the neurologist,
for anyone diagnosed with multiple sclerosis. We’re committed to providing holistic support
so you have a greater understanding of what to expect from your condition.
Manager: Lou Hatter on 9365 4809
Hospital Liaison Nurse (S.C.G.H.): 9346 3333
Community Nurses: 9365 4812, 9365 4838, 9365 4870, 9387 4846 or 9365 4888
PHYSIOTHERAPY Physiotherapy 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 Members to attain the highest possible level of independence.
Manager: Marilyn Sylvester on 9365 4837
Physiotherapy Office: 9365 4834
OCCUPATIONAL THERAPY Occupational therapists work with Members, and clients,
to enable them to continue their work and other interests for as long as possible, where they
may otherwise have been limited by their condition.
Manager: Sandra Wallace on 9365 4804
An occupational therapy contact can be reached on 9365 4888
COUNSELLING Some people need support to deal with the news that they have MS,
and the challenges that may present over time. Our qualified counsellors provide a safe
space for you to explore your concerns, in a safe and confidential environment.
Manager: Lisa Papas on 9365 4836
Support Counsellors: 9365 4808 or 9365 4811 Peer Support Program: 9365 4808
Welfare Officers & Funding Locators: 9365 4889 or 9365 4835
INDIVIDUAL OPTIONS We are able to supply limited in-home support such as
assistance with personal care for people with disability due to multiple sclerosis, 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 also manage DSC allocated individually funded care packages.
Contact us on 9365 4851 for more information.
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
Time to end progressive
multiple sclerosis (MS).
While considerable improvements in the treatment of the
early inflammatory phase of MS have been achieved, the
efficacy of these approaches in progressive disease has been
disappointing, even with the most effective therapies. 1
The Altas of MS, a worldwide study of the disease, tells us that
the number of people with Multiple Sclerosis has increased
from 2.1 million in 2008 to 2.3 million in 2013. The global
median prevalence rate, which we discussed in the previous
issue of your Bulletin, has increased from 30 in 2008, to 33
people per 100,000 in 2013. Epidemiologists add that “...the
cause of this increase is unclear”.
What is clear, however, is that more than 2.3 million people
worldwide currently living with Multiple Sclerosis. According
to figures supplied by the International Progressive MS
Alliance of Societies, more than half of these people, over 1
million people, are living with a progressive form of MS.
This progressive form of MS, the cause of which is neuron
degradation, diminishes peoples’ faculties over time. The
condition can affect vision, mobility, cognition and the ability
to work will suffer. With this loss, people will inevitably lose
their independence. Despite advances in treatments for
other forms of relapsing-remitting MS, there are no effective
treatments for the million people who have been diagnosed
with the progressive types of MS.
For those people who are diagnosed with progressive MS, or
later develop secondary progressive MS, there is no single
identifiable disease pattern. As a result, researchers also lack
the knowledge needed to focus their research, accelerate
the progress of their work, test outcomes and then devise
effective treatment.
The Progressive MS Alliance is a growing global initiative
to end progressive MS. This alliance began by bringing
together the world’s leading experts in MS to identify the
critical knowledge and treatment gaps where progress must
be made to achieve breakthroughs necessary to change the
world for people with progressive MS.
Professor Alan Thompson, Dean of University College London
(UCL) Faculty of Brain Sciences says that “...understanding
progressive MS is about as complicated as it can get, because
progressive MS is all about neuro degradation. It’s the Holy
Grail, in a sense, and it is what we need to now focus on — in
a collaborative sense. Collaboration is absolutely necessary
when you have a complex problem, and understanding
progression in MS is about as complex as it can get”. 2
Coordinated by the Multiple Sclerosis International Federation
(MSIF), this alliance of MS Societies is said by spokespeople
for the alliance to be “...the most ambitious collaborative
project the global MS movement has ever embarked upon”.
MS Research Australia (MSRA) has joined MS organisations
from around the world in this global alliance to put an end to
progressive MS. And your MS Society here in WA is proud
to announce that MSRA is the major beneficiary of the $1.5
million raised this year for research into finding the cause and
a cure for this nasty piece of work.
In any scenario, progressive MS is the next frontier for
MS research. Therefore, the principle task before us is to
understand progressive MS, and then to devise effective
treatment. This universal strategy for attacking disease is no
less valuable for being a cliché. It is worth hoping that present
therapeutic armamentarium will make a decisive difference in
the occurrence or severity of progressive MS. 3
Many of us older people have seen such announcements over
past years, but even the most cynical of us can recognise a
watershed moment when we see it. This is a new and exciting
development not only for people with the progressive types
of MS, but also for modifying the severity and occurrence of
progression in all types of MS over the long term.
Ransohoff, Hafler and Lucchinetti conclude that: “…it is
incumbent on the clinical and research communities to press
forward to model and decipher MS progression, which will help
both to develop therapeutics and general knowledge about
mechanisms of neurodegeneration”. 4 You will be hearing a
lot more about these exciting developments within and about
the Progress MS Alliance from us here at the Bulletin as
they come to hand – and as that old saying goes – “watch
this space.”
1
A. J. Coles et al, cited in a review representing the consensus view reached by experts in MS treatment from across Australia
and New Zealand, ‘A new era in the treatment of multiple sclerosis’, Clinical Focus, MJA (3), 4 August 2015, p. 141.
2
Alan Thompson and the International Progressive MS Alliance. (2014).
Retrieved from: https://www.youtube.com/watch?v=u5jgXDLSfs0&feature=youtu.be
3
Richard M. Ransohoff, David A. Hafler and Claudia F. Lucchinetti. (2015). Multiple Sclerosis – a quiet revolution,
REVIEWS, Vol. 11, p.140.
4
Ibid, p.140.
2 Spring 2015 The MS Society of Western Australia The MS Society of Western Australia Spring 2015 3

From the desk of the CEO
Marcus Stafford
“We’re doing well and there’s nothing to worry about”, said
the CEO of Kodak as he finished his presentation to his Board.
“This new stuff is a bit disruptive, but we’ve been around
since 1884 and we’ll be around for a long time yet.”
He may have slept well that night, believing that he’d nailed
it, but he didn’t get much sleep in the months that followed.
He learned too late that it is competition that should force
companies to get out of their complacency.
There is no room in the market for naïve confidence that a
healthy brand has an automatic right to prevail. Digital came.
Film went. And in 2012 Kodak filed for Chapter 11 Bankruptcy.
As for the MS Society, let’s do the “we’re doing well” bit first,
because indeed we are. The last twelve months have seen a
9 percent growth in Member Services, a 13 percent growth
in services to people with other disabilities, the continued
development of our strategic footprint, a strengthening of our
net asset position and the nation’s leading contribution to MS
research. We should all be proud of those results. Proud – yes.
But complacent that change is unnecessary and reserved for
other people – no.
And so to “...this new stuff is a bit disruptive” bit. Please
welcome to the stage the NDIS! The National Disability
Insurance Scheme.
It is a truly excellent scheme that will make a huge difference
to the lives of people with disabilities, but we should not
underestimate its game-changer status. Organisations
without scale and courage will go the way of Kodak. Every
week I meet CEOs of other disability organisations who have
failed to recognise the scheme’s significance and its resultant
effect on them. Their complacency places their organisations
at great peril. I love our sunburnt country and I wouldn’t
live anywhere else. I love our laid back approach to life,
but ‘she’ll be right mate’ has its limitations and where the
NDIS is concerned, we won’t ‘be right’ … unless we adapt
and change.
In the next three years we will be doing a number of things to
prepare ourselves for this great, but disruptive scheme.
We will be completing our property footprint with the
development of high support accommodation in the
metropolitan area, with focus on the northern suburbs. We
will also be building high support accommodation in Albany.
Our services hub in Bunbury will be completed and will
become the largest centre to service people with MS and
other neurological conditions in Bunbury and the South West.
By 2018 our accommodation, respite and allied healthcare
services will be provided across 18 locations around the state.
To support that ambitious plan for people with MS, and to
secure our Society’s future within the NDIS marketplace, we
must now continue our extension of services to people with
other neurological conditions.
This has win:win written all over it.
Allow me to be selfish on the part of people with MS first!
Not everyone with MS will be eligible to join the scheme.
People aged over 65 are automatically excluded and the
government’s evaluation system will cut out those that are
deemed to be ineligible as they do not meet the criteria of
requiring ‘reasonable and necessary supports’. However, at
the MS Society, we don’t see things in that black and white
way. We intend to continue to provide services to people in
both these categories, together with the broader base.
Great notion, but with the government’s block funding largely
gone, how will we pay for this principled strategy? The answer
sits mainly within two areas. Our own fundraising efforts will
continue unchecked. In addition, we will welcome the dollars
that NDIS participants with other neurological conditions will
bring to us.
The other part of the winning strategy relates to doing the right
thing. Many people, including folk with MS have approached
me over the years, asking if their friends and family members
with other conditions could access the Society’s services.
I have had to decline as, at a material level, I could not see
benefit for people with MS. Soon that position will change
as we accept NDIS income from those with comparable
conditions and needs, who have been accepted on the
scheme.
At the forthcoming Annual General Meeting the Board and I
will be asking Members, who are attending, to vote in favour
of this necessary change to our Constitution.
To avoid rubbing salt into the wound, we won’t tell the
CEO of Kodak about the lessons we have learnt from their
experiences, but we are grateful nonetheless!
A message from the General Manager
– Member Services Sue Shapland
“If opportunity doesn’t knock, build a door.”
Milton Berle
The source of this saying, an American comedian, surprised
me slightly, but that is often the case. Nonetheless the
wording is quite profound.
In many ways I think that is what MSWA has done consistently
over the last 10 years. When the opportunities for external
funding limited our ambitions, we diversified our fundraising
efforts and grew our own income significantly. This along
with sensible management of our funds has built and opened
our own ‘doors’, allowing us to build new accommodation
and respite facilities at Treendale and Hamilton Hill and
top-up services funding to support an increasing number
of Members.
And it isn’t over yet. The Council application for a new and exciting
outreach and services centre for Bunbury was approved! Now
we are finalising the plans and aiming for construction to start
by early 2016. The great land hunt for the north metropolitan
centre and accommodation is also underway.
2014/15 was another very successful year for MSWA overall
and for Member Services. We grew service hours for Members
by 9 percent overall, and increased staffing and supports
across the board, including some regional areas. Also, very
importantly we had a record response to our Members’
annual survey with excellent levels of overall satisfaction.
Of course this doesn’t mean we can sit back and relax. We
recently undertook two projects to review our offerings for
the newly diagnosed and low support Members. Thank you
to those who responded with their views and ideas; we will
be implementing a number of new strategies and will keep
you posted. Comments received included Members recalling
being unclear about what a relapse is and what to do should
it occur. This edition includes articles about relapses, Optic
Neuritis and information on assistive technology solutions for
folks with vision problems. We hope you find them of interest.
This has also been a year of great change, and some
challenges, for our staff as we work with both the National
Disability Insurance Scheme (NDIS) model in the Hills trial site
and the DSC WA comparison trial, NDIS My Way. The My Way
site kicked off in Busselton in 2014 and commenced in the
Cockburn and Kwinana areas on 1 July 2015. This means
we run varied systems across three programs in addition to
health, and we have been adapting and learning as we go.
For the latest update see Mark Douglas’ article in this Bulletin
on pg 14. Both sites are opening up funding opportunities for
some of our Members, and many others, with a greater focus
on individual needs and desired outcomes. We have thus far
targeted more detailed NDIS information to those living in trial
sites but we will be expanding opportunities for all Members
to learn more over the next few months.
Nationally the trial sites have been operating for two years
now, gaining experience and making revisions, and we are
awaiting Government decisions on how and when the full
scheme will be rolled out. That in itself will be a mammoth
task but the winners will be those in need of various supports
to meet their needs and enrich their lives.
Also this past year has seen another three MS therapies
approved by the PBS; Plegridy, Lemtrada and now Copaxone
40. When I joined MSWA in 2003 we had four relatively new
injectable disease modifying therapies. There are now 11
which means greater choice and capacity to switch if the
treatment isn’t working. There are still more treatments in
clinical trials and so much MS research ongoing in Australia
and around the world that there is always something new to
learn and maintain our unified dream of a cure someday.
Please remember the Member Services team is here to
provide you with quality information about all aspects
on MS treatments and research, and for support
and services. Please don’t hesitate to call reception on
(08) 9365 4888 and Janet will find the relevant staff to
assist you.
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 bhavna.jagtiani@mswa.org.au or call 6454 3114
and let us know your current email address.
4 Spring 2015 The MS Society of Western Australia The MS Society of Western Australia Spring 2015 5

Letter from the Board
Supporting the newly diagnosed and
our low support needs Members
Sue Shapland
MSWA and the National Disability Insurance Scheme (NDIS)
The NDIS is the biggest social reform the disability sector has seen in Australia’s history.
It will give people living with disability the power to choose who provides them with the services and care they need.
You will have received correspondence from our CEO, Marcus Stafford, informing you of our position and the need to
change The Multiple Sclerosis Society of WA (MSWA) Constitution. This will allow MSWA to provide our full suite of
care and support services to both people with MS and other neurological conditions, so that we may derive the full
benefit of NDIS funding. These funds will allow us to continue to provide and grow our services and support for you
and other people living with MS.
This proposed change to the Society’s Constitution will be presented at the next Annual General Meeting of Members
on Thursday, 22 October 2015.
As your Board of Directors, we strongly support this proposed change. This growth is part of our long term plans for
a safe, strong and sustainable future for your organisation.
Yours sincerely,
700
600
500
400
300
200
100
0
3
Under 18
years old
31
18-24
years old
165
25-34
years old
395
35-44
years old
612
45-54
years old
551
55-64
years old
374
65-74
years old
111
75 years
or older
George Pampacos
President
Greg Brindle
Director
David Jones
Director
Bill Hassell AM JP
Senior Vice President
Dr Greg Brotherson
Director
Horst Bemmerl
Director
Ros Harman
Vice President
Michael Linto
Director
Dr Joanne Samer
Director
Peter Wright
Treasurer
Professor Bill Carroll
Director
Jason Jordan
Director
As mentioned previously our 2014 Annual Members Survey
was overwhelmingly supportive of our efforts. However, we
must continually strive to evolve, evaluate and improve our
service provision, based on feedback from our Members.
The face of MS continues to change. We now have 11 MS
treatments thanks to the increasing number that have been
approved since the late 1990s. And, earlier diagnosis and
positive lifestyle changes means being diagnosed with
relapsing-remitting MS is, for many, less daunting.
This means we have a very diverse Membership. Ages range
from a small number of teens through to some in their nineties.
We have approximately 75 percent of Members living in the
metro area and the female to male ratio is approximately 3:1.
Whilst we have significant numbers of Members accessing
our various in and out of home supports and services, we
are also cognisant that we have many who don’t, for
whatever reason.
This year we have undertaken a project seeking information
regarding any unmet needs for our newly diagnosed and low
support Members. This was followed by a supplementary
project to gather a broader perspective. If you were contacted
and have participated in either of these projects - thank you!
These have helped identify some new opportunities for us to
test out and we will be implementing them over the coming
weeks and months. Here are just a few:
• Follow-up phone calls for 12-18 months for our newly
diagnosed/new Members; this will allow us to touch base
regularly, especially with those who aren’t seeing our
MS Nurses.
• Reviewing our web page content, adding more about
research and making the navigation clearer for Members.
• Establishing peer support group opportunities where
Members can come together informally and exchange
stories and experiences.
• Plan more short education forums after hours; topics such
as employment advice, financial planning and planning for
a family.
• Investigate more digital options for Members, including
closed Facebook groups and so forth.
We will keep you posted regarding our progress and
offerings and would love to hear from you if you have any
suggestions or comments. You can send your comments
to sue.shapland@mswa.org.au
6 Spring 2015 The MS Society of Western Australia The MS Society of Western Australia Spring 2015 7

Round-up of research
and other items of interest
Sue Shapland RN, BN
Here we bring you some of the latest MS research articles we
have sourced from web sites and journals from Australia and
around the world.
From MS Research Australia:
Australasian neurologists
review the ‘new era’ of
MS treatment
A recent collaboration between
24 top MS neurologists from
Australia and New Zealand
highlights the range of MS
treatments now available,
including 11 available with
government subsidies for
people with relapsing-remitting MS.
Their paper has brought together the latest information on
treatments and best practice for MS care.
The collaboration is led by Professor Simon Broadley from
Griffith University in Queensland, Chairman of the Australian
New Zealand Association of Neurologists MS Neurology
Sub-Committee and MS Research Australia’s Research
Management Council.
Advances in MS therapies over the past 20 years have
dramatically changed the outlook and prognosis for people
living with MS around the world. This paper aims to help
inform GPs and other clinicians, who need to be up to date
about the current best practice standards for treating MS.
Physicians need to be aware of both the benefits and the
potential complications associated with MS therapies.
From Barts MNS Blog
Efficacy of a telephone-delivered self-management
intervention for persons with multiple sclerosis: a
randomised controlled trial with a one-year follow-up
Ehde DM, Elzea JL, Verrall AM, Gibbons LE, Smith A,
Amtmann D.
This study sought to evaluate the efficacy of telephone
delivered self-management interventions for fatigue,
pain, and depression in adults with MS. One hundred and
sixty-three adults aged 25-76 years, with fatigue, chronic
pain, and/or moderate depressive symptoms participated. The
authors compared an 8-week individual telephone delivered
self-management intervention to an 8-week individual
telephone delivered MS education intervention.
Conclusions: Both interventions resulted in short and long term,
clinically meaningful benefits. The study demonstrated that
the telephone is an effective method for engaging participants
and extending the reach of care for individuals with MS.
From the
UK MS Trust:
Kessler Foundation
study shows poor sleep
contributes to MS
related fatigue
Dr Lauren Strober, PhD, an
MS researcher at Kessler
Foundation explored the
association of secondary
fatigue and sleep disturbances
in MS. Dr Strober confirmed that sleep disturbances
significantly contribute to MS related fatigue, a common and
often disabling symptom for people with MS.
Her study of 107 working individuals with MS showed 61
percent reported poor sleep. “Fatigue is detrimental to daily
functioning and well being,” noted Dr Strober. “It clearly
interferes with a person’s ability to participate fully in the
community and the workplace. If we can determine what
contributes to fatigue in MS, we can improve quality of
life and keep people engaged in work and social activities.
Routine screening for sleep problems and treatment of sleep
disturbances may reduce fatigue and its debilitating effects.”
From MSIF:
Updates on two of the 22 progressive MS research
projects being funded around the world by the
Progressive MS Alliance:
Identifying biomarkers of progression
People with MS are keen to know, “Will my disease progress
in the near future?” and “Will my disease progress quickly or
slowly?”. Knowing the likely course of their MS can help with
important life decisions. Doctors also want to identify those
people with rapidly advancing progressive disease who might
benefit most from early aggressive treatment.
Note: A bio marker is a biologic feature that can be used to
measure the presence or progress of a disease or the effects
of treatment. It could be a test, on blood or CSF (spinal fluid)
for example, that may assist in identifying differences in how
people will be affected by a condition or respond to treatments.
Understanding progressive MS
nerve cell damage
This is a hallmark of progressive
MS, and it may be due to
damaged nerve cell mitochondria,
tiny energy-producing factories
found inside all cells. Dr Don
Mahad, Senior Clinical Fellow
at the University of Edinburgh,
explains, “The mtDNA found in
nerve cells from people with progressive MS often contains
mutations.” His research team wants to determine how
easily these mutations develop in mitochondria from people
with progressive MS. They will also investigate a potential
relationship between the loss of myelin and changes
to mitochondria.
Read more at:
mswa.org.au/
researchupdate
8 Spring 2015 The MS Society of Western Australia The MS Society of Western Australia Spring 2015 9

Optic Neuritis
Sue Shapland RN, BN, Cert. MS Nursing.
Technology
to enhance vision
Robyn Loxley, MSWA Occupational Therapist
What is optic neuritis (ON)?
ON is an inflammation of the optic nerve, the bundle of nerve
fibers that transmits visual information from your eye to
your brain.
Who gets ON?
It most commonly affects young adults between 20-40
years and women more than men in the ratio of 3:1.
Approximately 70 percent of people with MS will have ON at
some stage.
Not everyone who gets ON goes on to develop further
MS symptoms.
What causes it?
ON is highly associated with MS, an autoimmune neurological
condition that causes inflammation and damage to the myelin
sheath covering nerves in the brain and spinal cord. In some
people, ON may be the first indication or presentation of MS.
ON can also be associated with other autoimmune conditions
such as systemic lupus, some bacterial and viral infections
and some drugs including an anti TB therapy.
What are the signs and symptoms?
ON usually causes some visual loss in one eye. Pain, worse
on eye movement, and temporary reduction in vision are
the most common. The extent of the loss of vision varies.
It usually worsens over days, and exercise and hot showers
may exaggerate the symptoms.
Colour vision is often affected and many people report seeing
flashing or flickering lights.
Is it treatable?
Treatment with steroids may speed up recovery of vision.
Complications can occur including permanent damage to
the optic nerve which may or may not cause symptoms.
Whilst most people regain normal or near normal vision
within months, for some vision loss may persist after the ON
has improved.
You can have more than one attack of ON.
When to see your doctor?
Eye conditions can be serious; they may cause permanent
loss of vision or be related to other serious medical problems.
You should seek medical advice if:
• You develop any new symptoms e.g. eye pain or a change
in your vision.
• Your symptoms worsen or don’t improve with treatment.
• You develop other unusual symptoms, including numbness
or weakness, which may indicate a neurological disorder.
References:
• mayoclinic.org
• UK MS Trust website A-Z of MS
There are a range of devices available to assist people with visual
challenges. As with most technology the options range from low
to high tech devices. A good assessment is the most important
thing to help determine what the most appropriate solution is
for the individual. Once this is decided, the necessary training in
the use of the device, and follow-up to make sure it is working
effectively, is also essential.
Tips for Reading:
Begin by using a strong bright light over your shoulder to increase
clarity and contrast. This can help provide an optimum reading
environment.
Hand held optical magnifiers come in a range of sizes and
can assist in magnifying text to make it easier to see. They are
a portable, light weight and inexpensive option if magnification
is all that is required. The range of magnification varies and you
need to pick the right strength for you.
Portable electronic magnifiers can provide up to 18 times
magnification, without reducing the field of view. This can make
reading easier and more comfortable.
There are also small to large desktop magnifiers that can be
used for larger text items such as newspapers, books and so
forth. Some have a screen reading option that will read the text
aloud to you. These have up to 57 times magnification and are a
good option for those who like to read for longer periods of time.
A few of these options are:
Prodigi Desktop: a lightweight CCTV that allows you to read with
a simple touch of your finger. You place what you want to read on
the plate below and it magnifies onto the TV screen in front of you.
It can also read it to you if you become tired of reading.
Readit Air: This is a portable device that can turn any computer
(with the software downloaded onto it) into a CCTV. The document
is placed under the Readit and is magnified onto the computer
screen. It also has the option of reading the document to you.
MagniLink Zip: This is a foldable, portable CCTV Screen Reader.
It can have a battery pack which makes it even more portable.
Scanners and Readers: If for whatever reason reading has
become too difficult and is no longer viable, there are other
options. The scanners and readers will read aloud from whatever
text you put under them.
They are easy to use and do not require much training. Just place
the book or document on the scanning area and press the scan
button. The buttons are all large, brightly coloured and very easy to
use. The machine then scans the text and reads it back to you. You
can adjust the voice rate and volume as well as forward and rewind.
Audio Books:
iPads or tablets can be used as an audio book as well as
being able to read on them. The text can be enlarged and the
background lighting changed, to make for optimum reading.
Our Members who have difficulty reading are able to join the
VisAbility (formally the Association for the Blind). VisAbility has an
application or app for both iPads and tablets, which allows books
to be downloaded in audio format. They have over 70,000 titles.
Daisy player: is an audio book player that can take either a CD or
USB device. VisAbility will download books for you. When you have
finished, send it back and they will send you more. An interest form
is filled in upon joining so they know the types of books you enjoy.
Computer Access:
Your computer will come with some built-in accessibility options
for making the screen easier to see. Just go to Control Panel,
then Accessibility options to see what is available.
iPads and tablets also have built-in accessibility options such as
Magnification and Voice Over.
There is also a range of specialised software designed for the
visually impaired.
MAGic: Magnifies the computer screen, talks text back to you, and can
be easily customised to suit your needs with colour and magnification.
Guide Hands-free: No keyboard or mouse required, as it is all
controlled through voice activation. Voice In/Voice Out means the
guide repeats everything back to you.
ZoomText: is magnification software, with many customisation
options to suit your needs. It can also speak text.
JAWS for Windows: This is screen reader software for your computer.
This allows everything on the screen to be read back to you.
Apps available for smartphones and tablets: Woolworths
have a free Scanning App that allows you to scan an object and
it will read the text.
CamReader: is an app that takes a photo of an object and will
tell you what it is.
KNFB Reader: is an app that takes a photo of text and will read
it back to you. This costs $130.
VisAbility is located in Kitchener Avenue, Victoria Park. They have
a small retail shop where you are able to purchase some of the
low tech devices.
They also have a Tech Centre where MSWA Members, who meet
the eligibility criteria for their membership, can be assessed for
the more high tech devices. If eligible it is possible to get funding
for items, either through a Lotterywest grant or an Equipment for
Living Grant.
For further information please contact our Occupational
Therapy Department on 9365 488.
10 Spring 2015 The MS Society of Western Australia The MS Society of Western Australia Spring 2015 11

What is a relapse?
Louise Hatter RN, MSCN, Cert. MS Nursing. MS Nurse Specialist
What is a relapse, how can you identify it and what situations
may contribute to a relapse?
A MS relapse, also known as an attack, a flare up or an
exacerbation, is caused by inflammation in the central
nervous system (CNS). The inflammation damages the myelin
covering the nerve fibres which slows or disrupts the flow
of nerve impulses to and/or from the area. This results in a
sudden onset of symptoms, which can be sensations or loss
of power, for example. The symptoms experienced depend
on the area of the brain or spinal cord affected. Some
relapses are relatively mild, while others may cause more
serious problems.
A relapse is defined as the appearance of new symptoms, or
the return of old symptoms, lasting for 24 hours or more, and
not due to infection or other causes. Symptoms experienced
before, or you have grown used to dealing with, might appear
in a different part of the body or have increased in severity.
To be considered a new relapse, these new symptoms must
occur at least 30 days after the start of a previous episode.
In relapses, symptoms usually appear over a short period of
time, such as hours or days. They often stay for a number of
weeks, although this can vary from very short periods of only
a few days to many months.
Symptoms which come and go can sometimes be considered
a relapse, they don’t always have to be continuous. For
example, some people experience a shock-like sensation
when they bend their neck forward. This can be considered
a relapse if it occurs every time they bend their neck for at
least 24 hours.
Relapses can vary from mild to severe. At their worst, acute
relapses may need hospital treatment, but many relapses are
managed at home, with the support of the GP, MS specialist
nurse, and other care professionals. Not all relapses require
treatment. Mild sensory changes (numbness or pins-andneedle
sensations) or bursts of fatigue that don’t significantly
impact a person’s activities can generally be left to get better
on their own. For severe relapses (involving loss of vision or
poor balance, for example) which interfere with a person’s
mobility, safety or overall ability to function, a short course of
high-dose corticosteroids (e.g. Methylprednisolone) may be
used to reduce the inflammation and shorten the length of
the relapse.
Studies in treating relapses with steroids have shown they
are effective in speeding up recovery but make no difference
to the degree of recovery or the long-term progression of
the person’s MS. Whether steroids are used or not, people
often make a very good recovery from a relapse, with
near complete remission. Around half of all relapses may
leave some lingering problems, however slight. This occurs
where damage to myelin is severe, resulting in some
symptoms remaining, though these may still improve over the
following months.
Symptoms similar to those of a relapse can occur when there
is an infection, more commonly a urine or respiratory infection.
This is due to nerve impulses being slowed or disrupted when
the body’s core temperature is raised. Symptoms will then
improve by treating the underlying infection. It is important
to rule out infection before thinking that new symptoms are
due to a relapse. Speaking with an MS Nurse, and/or your
neurologist, may help you better understand how to rule out
relapse and resolve underlying symptoms.
Many people feel they can identify things that trigger a
relapse for them. However, what appears to affect one person
doesn’t always apply to others, and research has not yet
found what triggers a relapse. This makes it hard to suggest
definite strategies for reducing the risk of relapses. What we
do know is that since Disease Modifying Therapies were first
introduced in the mid-90s research has shown that these
treatments reduce the number and severity of relapses.
Situations thought to contribute to a relapse:
Stress
Many studies have looked at possible links between
psychological stress and MS getting worse. The evidence
is not absolutely clear, but many experts believe that stress
might be one of many factors which could increase the risk
of a relapse. Anecdotally, many people affected by MS cite
stress as a major factor in bringing on a relapse.
Infections
Some infections, for example a bladder infection, may also
make an attack more likely. For this reason, people with MS
are encouraged to treat bacterial infections early.
Vaccinations
There is no proven link between vaccinations (e.g. for flu,
hepatitis B or any travel vaccines) and a relapse. If you’re going
to an area where a serious infectious disease is prevalent, it’s
generally far better to have a vaccination than to risk serious
illness, which could have far worse consequences.
Pregnancy
There is an increased risk of a relapse in the months
immediately after giving birth, however, many women with
MS have fewer relapses during pregnancy.
It’s often difficult for people with MS, especially in the first
few years after diagnosis, to know what is and isn’t a relapse.
It’s not uncommon to experience some ”on-off” symptoms
even during remission – for example, fatigue or balance
problems. New symptoms can be shocking or distressing at
any time, but not every symptom is a sign that a relapse is
beginning. Over time, you will understand your body and your
symptoms better.
Don’t put everything down to your MS. This can stop you
exploring what else could be causing a new symptom. It’s
possible that it’s nothing to do with your MS and needs to be
checked out.
If in doubt please contact our MS Nurses here at the
Society to discuss your concerns on (08) 9365 4888.
Information sourced from:
mssociety.org.uk
nationalmssociety.org
mstrust.org.uk
MS Nurses Australasia (MSNA)
Outstanding MS Nurse for the Year Award
Louise Hatter
Congratulations to Dee Menzies, one of our MS Hospital
Liaison Nurses, who was voted Outstanding MS Nurse for
the Year Award at the recent annual MSNA Conference in
Wellington, New Zealand.
Dee is a highly valued member of our nursing team and
shines in her role as MS Hospital Liaison Nurse. She
has played a pivotal role in enhancing service access,
particularly to rehabilitation services by collaborating with
the hospital staff to improve referral pathways.
Dee has proven an asset to both people with MS and
hospital based staff. In fact she was nominated by one of
the neurologists.
Denise is a shining example of the value of MS Nurses and
the direct and positive impact they can have on outcomes.
She is also humble and a quiet achiever who is just keen
to get things done.
We congratulate Dee on her well deserved award!
Dee Menzies with her award.
12 Spring 2015 The MS Society of Western Australia The MS Society of Western Australia Spring 2015 13

WA Trial Sites Update
- August 2015
Mark Douglas, Project officer, National Disability Insurance Scheme (NDIS) Trial
Uncertainty and peace -
can they hold hands?
Lisa Papas, Counsellor
The NDIS is the largest reform of the Disability sector
in Australia’s history, and the long awaited decision as
to what NDIS model Western Australia will adopt is expected
in December.
Whatever the decision, people deemed eligible to access the
NDIS will experience greater opportunity to access funding
and greater choice and control in the way they receive their
supports and from whom.
Two different models of the NDIS are currently being trialled
in Western Australia and both commenced on 1 July 2014.
The Commonwealth trial, NDIS, is available to eligible people
living in the local government areas of Swan, Kalamunda
and Mundaring and the State-based trial, NDIS-My Way, is
available to eligible people in selected areas of the Lower
South West region of Busselton and surrounds. The Statebased
trial NDIS-My Way was expanded to include eligible
people living in the local government areas of Cockburn and
Kwinana on 1July 2015.
The trials have provided the opportunity for learning from
both models, and time to consider any changes that may be
required to improve the NDIS model prior to the planned full
scheme roll-out that is expected to commence July 2016.
Last month I took time to talk to certain Members living in trial
site areas and asked them about their experiences. For those
that had participated, feedback was largely positive and yet
as at August 2015, only a small number of the people known
to MSWA that may be eligible have accessed the NDIS. I am
keen to understand why.
NDIS contact details:
For people living in the local government areas
of Swan, Kalamunda and Mundaring:
NDIS: ndis.gov.au
Telephone: 1800 800 110
NDIS Access checklist: ndis.gov.au/
ndis-access-checklist
One of the explanations frequently offered as to why they had
not tried to access the trials, was that the person felt they
would not qualify for assistance as they were still employed
and able to perform most daily living tasks independently
or with only a small amount of assistance. This does not
automatically exclude people from gaining access to the
NDIS and it may be that a small amount of assistance now
will reduce their needs in the long-term. Early intervention
is a component of the NDIS as it is believed that the earlier a
person receives supports, the more likely their future needs
will be reduced.
In the coming months, I will be contacting all Members living
in the trial site areas to ask whether they have accessed
the NDIS and if they have not, the reason why not. It may
be that people with MS may have different needs and it is
important that the final NDIS scheme recognises this and is
able to respond accordingly. The information gathered from
Members will then be provided anonymously to the respective
trial site Managers so that changes can be considered.
MSWA has always been here to assist our Members and we
know from experience that involving MSWA staff results in
better plans for participants.
If you would like further information, please contact
Project Officer for Member Services – Mark Douglas
on 9365 4824.
NDIS – My Way contact details:
For people living in the South West Region
& Cities of Cockburn & Kwinana:
NDIS – My Way: disability.wa.gov.au/
wa-ndis-my-way/wa-ndis-my-way/
Telephone: 1800 996 214
Eligibility Check: dsc.wa.gov.au/Am_I_Eligible/
“Sticking with uncertainty is how we learn to relax in the midst of chaos,
how we learn to be cool when the ground beneath us suddenly disappears.”
Pema Chodrom
Throughout our lives, all of us, at some time or another, deal
with uncertainty. Some of us can cope with uncertainty better
than others. So why is not knowing so scary?
Uncertainty can stop us living a full life. Uncertainty means
we can sit in the mud of “what if”, too scared to move forward
in case something bad happens.
We may miss out on travelling to an exciting new place
because we are too scared of the unknown. We may forego
opportunities with a new job or relationships because - what
if it doesn’t work out?
Often the worry of uncertainty creates imagined pain and
loss. We pre-empt the possibilities of change being positive
and sabotage ourselves with worry.
For those of us who don’t tolerate uncertainty, it shows itself
in behaviours such as worry, rumination, procrastination,
avoidance and intolerance. All of these behaviours take an
enormous bank of energy to maintain. Fear is the basis of
uncertainty and underpinning that is inevitable change. So
how do we change this behaviour? What can we put in place
to help us find peace during uncertainty?
Some steps to helping us tolerate and even embrace
uncertainty and change:
Try something new: trying something small and safe can
help us gain confidence and tolerance for bigger changes. Tiny
steps help us gain mastery over things that are challenging or
different. The more confident we become the less impact the
new or different will have on us in a negative way.
Making mistakes: If you make a mistake don’t see it as
a painful failure. If something doesn’t go as planned see it
as an opportunity for growth and learning, to get stronger
and wiser.
Think of change as a positive not a negative: There
is opportunity in change. Change might mean leaving a
place of comfort or losing something you love, but it also
can bring richness and opportunity that allows exploration
and fearlessness.
Establish your focus of control: If you can’t control
circumstances, it can quickly feel like you have no control
in your life. This initiates feelings and thoughts of fear. You
actually have more control than you think. You have control
over your thoughts. You can carry out a reality check! Is it
really as bad as you project? Can you change your thinking
and create fewer struggles in your mind? Fewer struggles
mean less stress. Controlling your thoughts allows you power
to change the fear. This gives you a sense of confidence that
your life is not a runaway train. You can control the speed!
Understand uncertainty: Our life journeys will always be
made up of a series of hurt, risks, laughter, and celebration.
Unfortunately we don’t get to pick in what measure these
things are presented to us. Sometimes it can feel like it is
all of one and none of the other. Learning to acknowledge
that there will always be uncertainty sometimes allows a
freedom that opens us up to joy, excitement, adventure and
peace. We learn that good things happen even as bad things
are happening.
Many people talk about having MS creating fear, uncertainty,
and anxiety. This is a normal reaction to being diagnosed with
a lifelong chronic condition. However, as time goes on, some
people have reflected that even though they don’t wish to
have it, the experience has created new ways of being that
they would never have envisaged.
It often means positive elements of self-care and compassion
that they would not have experienced if this life challenge had
not presented itself. Uncertainty creates opportunity!
I’ll leave you with a lovely quote from Gilda Radner and
a link to Ajahn Brahm’s talk on uncertainty from the
Buddhist perspective:
“I wanted a perfect ending. Now I’ve learned, the hard way, that
some poems don’t rhyme, and some stories don’t have a clear
beginning, middle, and end. Life is about not knowing, having to
change, taking the moment and making the best of it, without
knowing what’s going to happen next. Delicious ambiguity.”
– Gilda Radner
Ajahn Brahm and uncertainty:
youtube.com/watch?v=FnOPmLLm7F4
14 Spring 2015 The MS Society of Western Australia The MS Society of Western Australia Spring 2015 15

Getting around Perth:
a guide for the non driver
Sandra Wallace, MSWA Occupational Therapist
1. Train travel
All train carriages have clearly marked spaces for wheelchairs or scooters near the doors. However, only some stations are fully
accessible from the platform to the train entrance.
The following lines are fully accessible:
Train Line
Armadale/ Thornlie
Fremantle
Joondalup
Mandurah
Midland
Perth City
Stations not listed above have partial or limited access on the
platform and from the platform onto the train.
It is possible to request special assistance at the station
by calling at least one hour in advance of your arrival on
1800 800 022. The Transperth InfoLine can be contacted for
information on large print timetables, ticketing, lost property
and other general enquiries.
2. Bus travel
Not all buses are accessible. However, the wheelchair symbol
on the Perth bus timetable indicates a fully accessible bus on
the route. These buses have a low floor and are ramped. The
Central Area Transit (CAT) services in Perth, Fremantle and
Joondalup also provide full access.
A full list of accessible bus routes can be found
by calling the Info Line on 13 62 13 or visiting
transperth.wa.gov.au/Using-Transperth/Disability-
Assistance/Bus-Accessibility
Accessible train stations
Armadale, Beckenham, Carlisle, Gosnells, Kelmscott,
Thornlie and Victoria Park
City West, Grant Street, Lock Street, Mosman Park,
Shenton Park, Subiaco, Swanbourne and West Leederville
Clarkson, Currambine, Glendalough, Greenwood, Joondalup,
Warwick and Whitfords
Bull Creek, Canning Bridge, Cockburn Central, Kwinana,
Mandurah, Murdoch, Rockingham, Warnbro and Wellard
Bassendean, Maylands
Claisebrook, Esplanade and Perth Underground
Phone: 13 62 13 or visit transperth.wa.gov.au and search
for “accessibility”.
For translation and interpreter services you can call:
13 14 50.
It is important to be mindful of your own personal safety
while using public transport. If you need to report an
incident and wish to have a transit officer attend a
situation, you can call 9220 9999.
3. Ferry travel
Both the Mends Street Jetty in South Perth and the Barrack
Street Jetty in Perth are fully accessible. The ”Shelley Taylor-
Smith” ferry is able to accommodate users of wheelchairs
and scooters onboard.
4. Taxi travel
If you are a permanent resident of Western Australia and have
a permanent disability that results in difficulties with mobility,
vision or cognition, you may be eligible for the Taxi User’s
Subsidy Scheme (TUSS).
This scheme entitles most members to a 50 percent subsidy,
up to $25 for each single trip. Those who use a wheelchair or
scooter could possibly be entitled to a 75 percent subsidy, up
to a maximum of $35 for each single trip.
To discuss eligibility further or to request an application
form you can telephone 1300 660 147. The application,
along with some passport photographs, needs to be
returned via post.
5. ACROD parking
If difficulty is experienced when walking from a family
member or friend’s car in the carpark, on your own, or you
need a wide bay to fully open the door to get in or exit the
vehicle, you may be eligible for the ACROD parking program.
6. Using a mobility scooter or power
wheelchair in the community
If you are using a power wheelchair or scooter for the first
time it is a good idea to get some training.
If the mobility aid is not capable of doing more than 10km/hr it
is permitted on footpaths, pedestrian areas, shopping centres,
in public places and to cross roads.
It is important to consider the ongoing maintenance of these
mobility aids, such as upkeep of tyres, battery servicing and
ongoing suitability for your purpose. An occupational therapist
can assess what is most appropriate for you. RAC Wheels 2
Go membership will include emergency attendance for such
matters as a flat tyre.
More information on using a mobility aid to
access the community is available from an MSWA
occupational therapist or at the following website:
mainroads.wa.gov.au/UsingRoads/PedestriansCyclists/
Pages/MotorisedWheelchairGuides.aspx
To speak with an MSWA Occupational Therapist please
call 9365 4888.
The following website has more information on
accessibility surrounding the ferries or again the
TransPerth Info Line 13 62 13.
accesswa.com.au/Pages/Feature.aspx?FeatureID=2013
If you meet the eligibility criteria, receive the signage for your
car and you can then use the many ACROD parking spaces
marked with the wheelchair sign. Your application needs to be
endorsed by your doctor or an occupational therapist.
The application form and further information on eligibility
can be acquired by calling 9242 5544, or visit app.org.au/
16 Spring 2015 The MS Society of Western Australia The MS Society of Western Australia Spring 2015 17

That’s life
with Narelle
Narelle Taylor
What we leave behind
Ros Harman
As if it’s not bad enough being diagnosed with MS and having
to adjust my outlook on life and living, I have also had to
accept the condition and its impact on me.
Having sorted all of that out, I now realise I may also be aging.
I’m surrounded by age here at the nursing home where I live
but since I’ve been kissed by a fairy I guess I won’t stress out
too much about my own senility. I have observed however,
that along with the other residents here I too, just as they are,
will become comfortable with any failings that age will apply
to me. The fairy’s kiss has worn well.
I do try to sort some things out for particular residents and staff
but I’ve learnt that I have to be sure that it’s really necessary.
When my friend (let’s call her D2) is seemingly lucid, she will
admire fabric that my other friend D3 is wearing. D2 will talk
about the pattern of the garment and the prettiness of the
buttons but then thinks she has seen something crawling
on the garment. D2 will try to brush away the creature from
D3’s shoulder, whereupon D3 loses patience and insists there
wasn’t, then or ever, anything crawling on her garment. It is
usually a loud, attention attracting scene.
To defuse the situation I purchased a toy hairy black spider and
gave it secretly to D3. I thought D2 would shelve the heroics and
the brushing down forever when she encountered the “spider”
on D3’s shoulder, but the spider was taken away before it was
ever worn. I thought whoever took it may have considered the
heart attack it was likely to have caused. Mind you D3 now laughs
when the button admiration begins and I’m in the background
with my hand crawling spider-like across my shoulder.
MSWA to build Outreach and
services centre in Bunbury
The Multiple Sclerosis Society of WA (MSWA) has
announced plans to build an Outreach and services centre
for people living with MS and their families in Bunbury.
Bunbury City Council approved plans on 23 June with MSWA
planning to commence the build by early 2016.
The Bunbury region has been expanding over the years
making it the ideal location for a regional service hub.
There are now approximately 250 MSWA Members situated
between Mandurah and Margaret River with greater
numbers in and around Bunbury.
The centre will have disability access and provide a base
for our health team. The larger premises will also allow
On my own birthday this year, I celebrated the 44th
anniversary of my 21st, but my best friend’s husband Terry,
was this year’s star when he turned 70. We all sat at the
restaurant table wearing masks when he arrived and were all
delighted when his sister from interstate removed her mask
and truly surprised the old bloke. Birthdays are such fun if
you’re not worried about getting older - if you truly aren’t
scared of running out of time.
He accepted his 70th birthday congratulations with dignity all
evening but I think the best achievement of the evening was
mine. I was carried, without squealing, wheelchair and all,
up two flights of stairs because there was no elevator. Thank
goodness today’s kitchen staff eat Iron Man food.
My youngest daughter Bree recently despaired at our
conversations being so frequently interrupted by requests for
drinks, trips to the toilet, emergency nappy changes and so
forth. Her solution was to have a few days away without her
children with only the company of yours truly. We could then
talk uninterrupted. I don’t know that I have anything all that
special to say but I’ve accepted the invitation to the resort
in Bali and will sharpen my conversation skills before mid-
September so that she won’t be disappointed.
I’m sure she’ll have a great time even if I don’t say a word.
Just the relief of having time off from mothering will be
wonderful for her. I’ve never been to Bali and I’m interested to
know if the place is wheelchair-friendly. If not I’ll have to stay
in the resort and endure massages, manicures, pedicures and
such. That’s life in the slow lane, but it’s not too hard to take!
for increased opportunities for services with a sizeable
physiotherapy gym, a massage room and a spacious
meeting area for Outreach seminars and workshops.
The 630sq m centre will sit on a 2800sq m block on Mason
Street, in Bunbury’s light industrial area.
Our CEO, Marcus Stafford said, “This works for so
many reasons – it is a block of land in a great site, it is
well-positioned for us at an affordable price, and we can
build a state-of-the-art facility with car parking.”
Mr Stafford added that while there is still work to be done
before construction begins, he is hopeful that the centre
will be completed in 18 months.
My mother is losing herself. We laughed about her memory
lapses when they first started. Ha! Don’t we all forget names
from time to time? But it got worse and it got worse fast. The
diagnosis didn’t surprise us. My mother has dementia.
For several years my sisters and I made maximum use of
community services to enable Mum to keep living in her own
home but in the end she wasn’t happy. Eventually the time
came when she no longer recognised her lovely home and
began to wander around lost and frightened. It was then that
we decided it was time for her to move into a facility with
special care for people living with dementia.
We put Mum’s house in Albany on the market and were
surprised when the next day someone made a generous offer
on it. My sister, who lives nearby, had to spring into action to
empty it of her belongings. With the help of her daughter she
took photos of everything and put them on the internet in a
closed site for the family to see.
Over an intense three week period we watched the
paraphernalia of Mum’s life parade across our computer
screens. We saw everything from the crystal vase she was
given on her 21st birthday to the old electric frying pan she
had used for cooking sausages. In a remarkably civilised
fashion, my sisters and our children tentatively put our bids in
for various items that caught our fancy. Some of the choices
were made for practical reasons. The young ones picked up
a few items that will be very useful for them as they set up
their households, but my sisters and I are at that time in life
when we don’t really need any more stuff. I picked out a few
items for sentimental reasons – some lovely china and a nice
garden statue that Mum loved. Most of the furniture was sold
cheaply to a friend. In the end, what was left was carted off to
the Lion’s club for their annual charity garage sale.
Sadly, my mother doesn’t know what has happened to her
house or her things. We tried to explain it to her but if she
did comprehend what was happening, she soon forgot. She
doesn’t remember much anymore, especially if it has only just
happened. Much of the time she thinks she is back at the
girls’ hostel she lived in when she worked in Melbourne in
the 1940s. She often talks about going to visit Auntie Queenie
who would be about 125 years old if she was still alive today.
Everything since then is mostly lost to her: her two happy
marriages, her achievements as a mother and a farmer,
singing in the Light Opera Company, running a boarding
house and being an active member of the Albany community.
All these are alive only in the memories of my sisters and I.
I can’t help wondering if I will end up like my mother. My
sisters and I all worry about it. Each time one of us finds
ourselves momentarily forgetting something, no matter how
trivial, we stop breathing for a second. I don’t know how well
my brain will survive the next few decades. I do what I can to
keep it healthy - if you count playing Sudoku and Words With
Friends, exercise. I had an MRI scan taken the other day and
saw what it looks like, which only served to confirm my long
held dislike of having photos taken of myself.
One day I will get old and might need to move into a facility,
perhaps one built by the MS Society. I don’t know if anyone
is going to want any of my belongings. My daughter will
have to sort that out. I hope she will treasure my mother’s
garden statue.
18 Spring 2015 The MS Society of Western Australia
The MS Society of Western Australia Spring 2015 19

Volunteer Update
Dawn Burke, Volunteer Coordinator
A recent review was also conducted to find the true definition
for volunteering in Australia. The results were collated from
national stakeholder information sessions and online surveys
to gauge community views. From all of this information,
Volunteering Australia has announced the new definition for
volunteering as: time willingly given for the common good
without financial gain. Please go to the Volunteering WA
website if you would like to find more information on this.
With that in mind, I would like to welcome all our new
volunteers to the MS Society, as we open our arms and
embrace them into our family. It is very important for all Staff
and Members to continue to make the new, and the not so
new, volunteers feel welcome and to remember to thank them
for the amazing job they do. Believe me, this goes a long way.
Lastly, we had three longstanding volunteers who decided to
hang up there boots, knives or phones, depending on their
volunteer position and whichever way you would like to look
at it. I would like to take this opportunity to thank them all
collectively for the years and time they have given to us (34
years combined) and wish them the very best for the next
chapter in their lives. Please enjoy your future endeavours and
don’t forget about us, as we won’t forget about you.
Paul Watson has been volunteering with us for over 14
years. He has volunteered tirelessly with the Wilson Tuesday
Outreach Group and has made a huge difference to so many
of our Members. Thank you Paul for all of your blood, sweat
and tears over the years, it is much appreciated and will never
be forgotten. We wish you well with your future endeavours
and whatever road you may take from here.
Jean Shepherd has been volunteering with us for over 10
years in the Wilson kitchen keeping all the hungry mouths
fed and watered. Jean has still been popping in from time to
time lending a helping hand. Thank you Jean, your time and
commitment is appreciated and we love seeing you coming
back in every now and then. Enjoy your retirement years.
Lastly, but certainly not least, Marilyn Lawson decided to
literally hang up the phone in reception on Fridays! Marilyn has
been the “go to” person for all visitors, Staff and volunteers
every Friday for the past 10 years. Thank you Marilyn for your
ongoing commitment to the Society and we wish you all the
best for the future. I do believe Marilyn will be spending her time
travelling around the world unlike the rest of us mere mortals.
That’s all from me for this Bulletin. I look forward to catching
up with you all in the corridors of Wilson or out and about at
one of our many Outreach, residential and respite facilities.
Once again, as always, I wish to thank you all for the great
contributions you make to the MS Society and our Members.
Every minute is appreciated and extremely valued by all, you
are truly wonderful people. Take care and bye for now.
Hello everyone, I trust this Bulletin finds you all fit and well,
and hopefully most of you came through the winter unscathed
from any of those winter nasties. Goodbye winter, hello spring
with the birds and the bees and all the sunshine that follows!
National Volunteers Week was celebrated nationally from 11
to 17 May 2015. This year I decided to hold the volunteer
luncheon the week after Volunteers Week to allow our
volunteers to attend any other celebrations they may have
been invited to, whether here in the Society or elsewhere in
the community. Many volunteers offer their valuable services
to multiple organisations, which enhances more and more
lives across this wonderful country of ours.
During Volunteers Week I was very fortunate to attend the
Members camp at Guilderton, Moore River, from 11 to 14
May. Members attending the camp were fortunate to have a
couple of our lovely volunteers come along and join in all the
fun and frivolity. The camp fell within Volunteers Week which
created a perfect opportunity to recognise those Members
attending who are current or past volunteers, either with us or
other organisations. What a great way to celebrate with and
acknowledge all of their time and efforts with a scrumptious
high tea, compliments of our very own talented Teresa from
Individual Options.
Volunteer luncheons were held on 18 May for our metropolitan
volunteers and 21 May for our Bunbury volunteers. Our metro
volunteers enjoyed their luncheon at Burswood on Swan,
which is a beautiful venue with the Swan River and gorgeous
city as our view. The feedback was fantastic and the food
couldn’t be faulted. It was lovely sitting inside enjoying a
sumptuous meal while watching the much needed rain falling
around us.
Bunbury’s luncheon was very much a contrast to Perth,
as the sun god was out delivering sunshine and clear blue
skies for all to enjoy. A last minute hiccup resulted in a quick
change of venue! Luckily for us the Waters Edge Café and
Restaurant, which is nestled right on the Leschenault Inlet,
was able to come to the rescue at short notice. We all enjoyed
the fabulous fine fare they had to offer and a fantastic time
was had by all.
I attended a Volunteering WA network meeting in July and was
provided with some interesting statistics around volunteering.
Did you know the current projected dollar amount for services
provided by volunteers within organisations is valued at
$33.71 per hour? And the economic, social and cultural value
of Volunteering in WA is conservatively valued at $39 billion!
This equates to volunteering being the industry’s biggest
sector in WA. What an amazing contribution this is to all the
many organisations that recognise the value of volunteers
in the workplace. You cannot measure the amount of skill,
knowledge and experience that you bring to the MS Society
and we are very blessed to have such an array and dedicated
group of volunteers.
The law of detachment Dr Andrew Ong
When the unknown arrives in the form of a traumatic
event, such as the diagnosis of MS, there is no option but
to come to grips with an unknown future. Your willingness
to do so however, can only be enhanced if you have an
inkling of an understanding of the law of detachment. In
detachment, you will acquire a measure of the wisdom
of uncertainty that has been factored into every moment
of your existence. This means that no matter what may
befall you in the future there is still excitement, adventure
and mystery. You can still experience the fun of life – the
magic, the celebration, the exhilaration and the exultation
of your own spirit.
Having been diagnosed, the time has arrived when it
pays to take a step back and review your goals, examine
your life and what the future might hold. At such times
of uncertainty, the law of detachment tells us that in
uncertainty lies the freedom from our past, from the known
which is the prison we have constructed for ourselves and
a past that others have conditioned us to believe is true.
However, if our future suddenly becomes uncertain, if you
can then detach yourself from the past and boldly step into
the unknown, you can look at all of the new possibilities
before you.
The ancient scholars of the Mundaka Upanishad tell us that
the Law of Detachment says in order to acquire anything
in the physical universe, first you have to relinquish your
attachment to it. This doesn’t mean you have to give up
the intention to create what you desire, and neither do you
give up your desire to create it but you do have to give up
your attachment to the result.
For instance if you begin to believe in yourself then
everything else becomes symbolic — cars, houses, money,
clothes and jewellery — these symbols are transitory,
they come and they go. Therefore chasing symbols is like
settling for the map instead of the territory. Fixating on
symbols can only create anxiety and end up making you
feel hollow and empty inside because you are exchanging
yourself for the symbols of yourself.
Attachment therefore is always about symbols, whereas
detachment is freedom to create. Even the search for
security is an illusion and if you haven’t already found
it, that’s the point. The search for security and certainty
is actually an attachment to the known. And what’s the
known? The known is our past. The known is nothing
other than the prison of past conditioning. Whereas the
unknown that has been foisted upon you is the field of all
possibilities, ever fresh, ever new and always open to the
creation of new manifestations. You can reinvent yourself.
20 Spring 2015 The MS Society of Western Australia The MS Society of Western Australia Spring 2015 21

Best of the West
MSWA Annual
Dinner Auction
The Multiple Sclerosis Society of Western Australia
(MSWA) hosted the annual MSWA Dinner Auction at the
State Reception Centre, Fraser’s, Kings Park on Thursday,
6 August 2015.
Now in its 11th year, the dinner is held to recognise MSWA’s
key sponsors and supporters. Over 260 guests enjoyed a
fabulous evening while supporting Western Australians living
with multiple sclerosis (MS).
Guests bid for a range of locally donated products in the
exciting silent and main auctions and the total raised for the
night was an impressive $36,875.
All the funds raised from the MSWA Dinner Auction will
support Western Australians living with MS.
MSWA Commitment Awards
MSWA’s annual Dinner Auction saw members of the MS
community rewarded for their continuous support with the
2015 MSWA Commitment Awards.
Announced on the night by MSWA President George
Pampacos, the awards recognise the significant and
meaningful contributions made by both individuals
and businesses in support of people living with MS in
Western Australia.
The Business Award was presented to Larry Cherubino
Wines, who have been loyal supporters of MSWA for over
eight years.
Owners Larry and Edwina Cherubino accepted their award
and were overwhelmed by the honour.
“We are thrilled to be acknowledged. We love helping
the MS Society of WA and no thanks are required. This is
an amazing organisation that helps so many people,” Mr
Cherubino said.
Dave Savy, a long time volunteer for MSWA, was presented
with the Commitment Award in the Individual Category.
“Volunteering is something that I have enjoyed doing and
have never expected anything in return. Winning this
award shows just how much MSWA appreciates their
volunteers,” said Mr Savy.
(L-R) George Pampacos and
Dave Savy.
(L-R) George Pampacos,
Edwina and Larry Cherubino.
MSWA CEO Marcus Stafford commended the worthy
winners.
“Cherubino Wines and Dave Savy are both so valuable
to our organisation and I’m extremely pleased they have
been acknowledged for their efforts,” he said.
“If you have attended our events, you would recognise
Dave as a familiar face. He is always willing to help and
ready with a smile.”
Marcus added, “Larry Cherubino Wines have been
supporters of MSWA for many years, providing their
fabulous wines to a number of our events. Guests at
the dinner had the pleasure of pairing the donated Larry
Cherubino Wines with their exquisite meals.”
Chevron City to Surf for Activ
This year’s Chevron City to Surf for Activ saw a number of
dedicated fundraisers running or walking for MSWA
Held on 30 August, long time supporters Pharmacy 777
took part once again this year, raising over $18,000.
Congratulations also go to Lloyd Dorsogna, who has been
living with MS since 2002 and ran in the 12km course with
his Dad and father in law. Lloyd continues to live a fulfilling
life despite his diagnosis. He said, “I have worked, travelled
the world, completed medical specialist training, obtained a
PhD, met and married my beautiful wife Martina, become a
father to two fantastic boys... and there is plenty more to be
achieved!” Over $23,000 has been raised for MSWA so far.
We’d like to thank all who took part and everyone who
donated to help Western Australians living with MS.
EveryWoman expo
The Mundella EveryWoman Expo was held at the Perth
Convention and Exhibition Centre from 19 to 21 June and
everyone attending had a fabulous time! Now in its 17th
year, the event showcased fashion catwalks, empowering
workshops, cooking classes, food sampling, beauty
makeovers, and our very own MS stand. The highlight
was the Bodhi’s Bakehouse Celebrity Kitchen, where Perth
celebrities cooked and raised funds for MS! Our very own
MSWA Ambassador Josh Kennedy, joined in and whipped up
a delicious fried rice dish.
Thank you to everyone who came down and supported
MSWA.
MS Mega Home Lottery
The MS Mega Home Lottery launched in August 2015 and
it’s our biggest yet! Selling out in just 13 days, luxury cars,
dream holidays and an Early Bird Prize of $500,000 are just
a few of the many prizes on offer. The Grand Prize Winner
will be in the enviable position of choosing between a fully
furnished, Webb & Brown-Neaves show home in City Beach,
valued at $1.6 million, or $1.35 million in cold, hard cash. For
the first time ever, four $50,000 Cash Bonus Prizes were on
offer, with the lucky winners announced on 16 September.
With a one in 25 chance of winning, keep your eyes
peeled on mslottery.com.au or head to our Facebook
page to find out if you win big! All remaining prize draws,
including the Early Bird and Grand Prize will be drawn on
Wednesday, 14 October 2015.
Lloyd (L) with his dad at the event.
22 Spring 2015 The MS Society of Western Australia The MS Society of Western Australia Spring 2015 23

Pictures of MS
In July, MSWA launched a campaign to highlight
Member stories and show how no two people with
MS have the same journey.
Developed by The Brand Agency, the ‘Pictures of MS’
campaign takes the real life experiences of three
Members at different stages of MS and brings their
stories to life using the talents of three different
international artists. The stories of Members living
with low, medium and high impact MS show the
diversity of the condition.
The underlying theme of the campaign, ‘Every person
with MS has their own story. With your help, we can
tell a better one’, was designed to educate the public
about MS and encourage people to visit the MSWA
website and donate to help fund vital research and
to provide support and services for people with MS.
Treendale Gardens respite is a six-bed respite facility in
Australind, only 15kms from Bunbury. This beautiful MSWA
built facility opened in 2012. Each single room has a ceiling
hoist for those that need it, a TV and shared accessible
bathroom. We are able to support our clients with their
various needs.
We have a large communal dining room where you can enjoy
wonderful homemade meals prepared by our staff. There
is a roomy communal lounge area with a large TV and DVD
player. Bring along your favourite DVDs or use ours. We have
two outdoor courtyards, easily accessible for clients and
their visitors, and we are right next door to a lovely park,
with a lake, fountain and a wheelchair friendly path. We try
to organise regular outings within the Australind and
Bunbury region.
Attached to, but closed off from the respite facility is a
three-bedroom accessible family holiday unit. This is a
fantastic innovation designed so families can come for a
holiday together. One room has an electric bed if required
and a ceiling hoist. The unit suits couples, families with young
children and extended families. Everyone who has stayed
so far has enjoyed the freedom of being in apartment style
accommodation whilst knowing that staff are on hand to help
with personal care if needed.
Treendale Gardens
respite and holiday unit
Linda Kidd and Paula Kennedy
The open plan area has a self contained kitchen with dining
and lounge areas, a large TV, DVD player and Wii console with
games available for use. There is a courtyard so you can sit
outside and enjoy the fresh air. The holiday unit has its own
garage and front door entry for privacy and the freedom to
come and go at times that suit you and your family.
If you would like more information please contact Linda
Kidd on 9725 9209 or Paula Kennedy on 9725 9994,
weekdays between 9am and 2pm.
Scrooge’s Christmas
Principal Academy of Dance and Theatre Arts and MSWA
were pleased to present Scrooge’s Christmas to MSWA
Members, just in time for Christmas in July. Held on 4 July
at the Nexus Theatre at Murdoch University, the play was
an adaptation of Charles Dickens’ much loved classic tale,
A Christmas Carol.
Over 100 Members and their families and carers enjoyed
the dynamic and engaging retelling of the transformation
of Ebenezer Scrooge from a cantankerous, miserable miser
who values money above all else, to a joyous and generous
human being that realises love and companionship are
the true riches a life well lived has to offer. Members
thoroughly enjoyed the performance and thanks go to the
Principal Academy for putting on an amazing show for all!
24 Spring 2015 The MS Society of Western Australia The MS Society of Western Australia Spring 2015 25

Wilson Outreach News
Nicola Ryan
Bunbury Outreach News
Keeping warm over winter has been lots of fun!
In June we had a pyjama party complete with roasting
marshmallows over a fire pit. Our Members braved the cold
with blankets over their knees and were pleasantly surprised
at just how much heat the fire pit gave out! Not to mention
the smoke when it was lit under the patio (but we won’t go
there!). This was yet another wonderful idea of Activities
Officer Giselle, who certainly has been keeping the home fires
burning over the last three months.
One of our biggest events was Christmas in July when
over 60 Members, Staff and volunteers enjoyed a week of
beautiful roast lunches together with all the trimmings which
went down a treat! The raffle was extremely popular and
over $500 was raised. Our thanks must go to everyone who
always supports the Outreach raffles.
Gardening was again on the agenda. Our friends from
Bunnings in Willetton planted our winter crop including
broccoli, silver beet and cauliflower but so far the potatoes
have been the most successful. Our vertical garden,
constructed by Bunnings Subiaco, has a beautiful show of
pansies. The Members enjoyed planting them and many
others have enjoyed seeing them bloom.
We were also lucky enough to have Duo 41 perform for us
on a particularly wintery day. Their music was warming to
the soul for all who were privileged to be here. Roger and
Bill performed for us earlier in the year and are very popular
as they play music from the early 40s. Members and Staff
truly enjoy singing along with them and Frank, our masseuse,
thoroughly enjoyed giving them a helping hand with the good
old Irish jig. We hope to be having them visit again before the
end of the year as they have made many friends at Wilson.
As the winter season has well and truly descended upon us
and we are all trying to avoid the dreaded colds and flu that
come with it, many of our regular Members have taken the
opportunity to fly off to warmer climates on holidays. But
whilst our attendance numbers may have been slightly down,
we have also warmly welcomed several new Members joining
our Wednesday group meetings, adding a new dynamic to the
friendly banter and camaraderie of our group.
Staff numbers have also been on the rise as we welcome
our new Physiotherapy Assistant Vanessa, second Masseuse
Helen, full-time Occupational Therapist Janine and Assistant
South West Staff Coordinator Carole to our Health Team.
This has allowed Staff to maintain comprehensive services
to Members attending Wednesday’s meetings and in the
community throughout the South West region.
Our usual fundraising activities have been very well supported
by all Members and Staff at the group. Our two Soup Kitchen
morning teas were heartily enjoyed by all diners. Many thanks
to our soup chefs for donating their culinary skills and the
ingredients. A big thank you also to our budding artist Louise
for donating her two canvas’ for the “Originals” painting raffle,
they are both one in a million art works and congratulations to
our volunteer and lotto lady Marie for winning the “Guess the
Fifty Dollar Note” prize just in time for her birthday.
On 5 August we welcomed the Society’s CEO, Marcus Stafford,
to the group for the regular CEO Update presentation, along
with the exciting and long anticipated presentation of our
new South West Outreach and Services centre. The building
plans look amazing and were well received with a positive vibe
around the room on the day from everyone there. The feedback
from Members was that we all now have a tangible and positive
outlook for the near future. Thank you MSWA!
Southside Outreach News
Angela Wallace
Albany Outreach News
Caroline Clark-Smith
What fun we’ve been having over the past few months
here at Southside!
We had a very successful sausage sizzle at Bunnings at Port
Kennedy. The store ran a raffle for the month of May to raise
awareness of MS. The store donated an outdoor gas heater
as the prize and raised $317. We raised a total of $600 and
our thanks go to Bunnings for their support.
Friday activities/themes are always popular. Beanie and Scarf
Day in July kept us warm. Football’s Western Derby gave us
the chance to dress up in our team’s favourite colours and
some Members proved to be very passionate supporters
-especially Kathy and Jacqui. And quizzes have kept us on
our toes, so to speak!
Beechboro Lodge: News from north of the river
Zoe Harrison, Resource Coordinator
Whilst our Eastside and Northside Outreach groups have been
coming to the lodge since we opened the doors on 25 June,
2003, both groups were formed long before this. Eastside
is about to celebrate their 25th birthday on 14 September,
2015 and Northside is celebrating their 27th birthday on 25
September 2015. We will close the centre on those days so
all Members, Staff and volunteers can venture out to a local
tavern for lunch and celebrate in style.
Big thanks to Rosalie and her helpers in the kitchen for
providing such a delicious turkey dinner for our Christmas in
July party! We really do appreciate all the effort you put into
making our Friday lunches so special.
And speaking of food, Member Jenny is always surprising
us with little home-baked treats – muffins, cakes etc. We are
very grateful!
Our Physiotherapy room has had a makeover with newly
refurbished, repainted and recovered treatment beds, parallel
bars. Thanks to Erin we now have a big mirror over the Moto
Med. Now we can see what’s happening behind us! We would
like to thank our Physiotherapist Sharon for all her efforts, the
room feels and looks like new.
Both groups attend the centre weekly to share stories, join
in with the activities, work hard in the Physiotherapy room
and enjoy a relaxing massage. Recently we celebrated with
our annual Christmas in July party. There was a great festive
spirit in the air with Christmas party games, marshmallows
on sticks and a Christmas lunch for all to enjoy.
We are all looking forward to the rest of the year with
planned outings to the Chocolate Factory, guest speakers
and our real Christmas in December party!
We have been busy here in Albany this year with the Albany
Swim for MS and all the visits from various Staff from Perth.
It has been great for Members to be given the opportunity
to have access to a speech therapist, counselling services,
MSWA Welfare Officer and to Gail, our Community Programs
Manager. If you missed out but are interested in speaking with
any of the MSWA Staff, please contact Maureen, our local MS
Nurse so we can keep you informed about future visits.
Our CEO, Marcus, is always very well received. He gave
us an update on the MS Society’s current financial status
and the goals for the future. This includes the building of a
high support accommodation facility here in Albany in the
near future.
THE CAMERA CLUB
We are pleased to have Lilli on board as our new
Physiotherapist. A big thanks to all those who have taken the
opportunity to have assessments and their exercise programs
updated. She has been kept busy and is keen to help anyone
who is interested.
This year has gone by fast and we will need to get started on
planning for next year’s Albany Swim for MS. It will take place
in February, and will be here before we know it.
If you have any local businesses in mind that may be able
to donate goods, fundraising ideas, or if you can volunteer
some time to help out in the lead up or on the day, please let
us know. Many hands make it easier.
We used some of the funds raised to buy a laptop and
projector for use at the Group when we have guest speakers
and other activities.
A free monthly outing for Members.
Transport to various picturesque venues
around Perth can be arranged through
the Wilson office.
Please contact Sumit Sandhu
for registration and inquiries.
Phone – (08) 9365 4843
Email – sumit.sandhu@mswa.org.au
26 Spring 2015 The MS Society of Western Australia The MS Society of Western Australia Spring 2015 27

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