MSWA Bulletin Magazine Summer 15 WEB

ulletin
The Official Magazine of the MS Society of WA | mswa.org.au
Members during a physiotherapy session at the Wilson Outreach Centre
Summer 2015
What does this jargon mean?
NDIS update
Young mothers and MS
Ocean Ride for MS

Inside | Summer 2015
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
MSWA Christmas closure 5
Annual General Meeting 2015 6-8
MSWA CEO wins national award 9
NDIS update 9
Round-up of research and
other items of interest 10-11
What do they mean? 12
What is Magnetic
Resonance Imaging (MRI)? 13
NDIS WA Trial Sites Update (November) 14
There’s an app for that! 15
NDS Conference 15
Trials currently recruiting 16
Thermoregulation 17
An Easy Pour Kettle 17
Mandatory Reporting – what is it? 18-19
Mothering young children –
challenging, yet beneficial 20-21
MSWA Nurse Marisa Pinerio retires 21
What do you say when you’re
‘Back in the Game’? 22
The Sailing Sclerosis Project:
Oceans of Hope 23
Events Calender 2016 24
The law of intention 25
MS Mega Home Lottery 25
Ocean Ride for MS 2015 26
Santa’s Gift 27
That’s life with Narelle 28
Volunteering with Dawn 29
Wilson Outreach News 30
Bunbury and South West
regional round up 31
Michelle Payne rides Prince of Penzance
to victory in Australia’s biggest race 31
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
2
Summer 2015 The MS Society of Western Australia

Letter from the Editor
Dr Greg Brotherson
In your previous Bulletin, we discussed the International
Progressive MS Alliance of MS Societies, formed to put an
end to progressive MS, and found that there are more than
2.3 million people worldwide currently living with multiple
sclerosis (MS). And, according to figures supplied by that
organisation, more than half of these people are living with a
progressive form of multiple sclerosis, the cause of which is
neuron degradation.
Despite advances in treatments for other forms of
relapsing-remitting multiple sclerosis, there are no effective
treatments for the million and more people who have been
diagnosed with the progressive types of multiple sclerosis.
This number is growing as it includes those of us with
relapse-remitting multiple sclerosis who have since gone on to
develop and been diagnosed with secondary progressive MS.
Cracking the code to unravel this puzzle is said by researchers
to be akin to recovering the Holy Grail. Your Society here in
WA is proud to announce that we are the largest contributor to
MS research in Australia. Through our contributions invested
in MS Research Australia, this money finds its way to this
growing International Progressive MS Alliance.
The International Progressive MS Alliance has interviewed Dr
Trevor Kilpatrick, from the Melbourne Neuroscience Institute,
who talks about the challenges behind finding the drivers of
progressive MS that causes such significant disability. To
see this video, type ‘International Alliance interviews Trevor
Kilpatrick’ into your browser (I use Google).
In this Christmas edition of your Bulletin you will also find an
article from the CEO, Marcus Stafford, outlining the future
direction the Society will be taking as the NDIS is rolled out
next year. It is one of bricks and mortar on the ground as
the Society strengthens its presence in the country, and the
western and northern suburbs of Perth. When finished, this
program will generate the income necessary to support the
70% of people with multiple sclerosis that modelling tells the
Society managers will be ineligible for funding under the NDIS.
“We are determined to put in the hard yards over the next two
years, to set us up for a strong and solid future for the next
decade and beyond.” Marcus Stafford
In her article, Sue Shapland, General Manager, Member
Services, tells us about some of the highlights in her year,
and gives us a glimpse into 2016. Sue also contemplates just
how quickly the year has passed, but forgets to mention that
she has also been doubling up in Adelaide.
Time certainly flies Sue when you are spending a lot of this
time flying between Perth and Adelaide, and then using
this time to such excellent effect. The MS Society in South
Australia & the Northern Territory now has in place the same
remarkably efficient service and care model we have here in
WA – which takes time and a lot of tireless work on your part
Sue, all for the sole benefit of people with multiple sclerosis.
Elsewhere in your Bulletin you will find articles from our usual
contributors Narelle, Ros, and Dr Ong, who are blessed with
particular insights. You will also find an excellent article by
Astrid Plumb-Parlevliet on the challenges multiple sclerosis
presents when it comes to pregnancy and mothering young
children. There is a complete roundup of the latest research,
and of course all the Outreach news.
I would like to thank Members who have contributed an
article, and again confirm that we welcome your unsolicited
submissions. Our aim is to present a smorgasbord of delightful
insights, research and information about living with multiple
sclerosis, along with the latest news about the politics
of disability.
In closing for this year I would like to thank the members of
the Editorial Committee who give their time so freely to make
this magazine possible. In that regard every one of us is a
volunteer here at the Bulletin treadmill.
On behalf of the Editorial Committee let me also thank you,
our readership. Without your support the Bulletin would not
exist, and what a loss that would be! For people with multiple
sclerosis must always be in a positon to be informed of their
condition, the politics of disability and able to define the image
of themselves that they want projected into the community.
Finally may I take this opportunity to wish everyone a
Merry Christmas, goodwill, health, peace, generosity
and a Happy New Year. Stay safe, keep cool this summer
and we will see you again in 2016.
The MS Society of Western Australia Summer 2015 3

From the desk of the CEO
Marcus Stafford
As we approach the end of what has been another successful
year at the Society, we find ourselves in a strong position
where we can focus on our future with confidence.
We arrive at this point having put in the hard yards. Today, we
have a strong balance sheet, with a dedicated team that sits
behind this success.
The actions we take in the next two years will secure our
future in the next decade. So, what do the next two years
look like?
MSWA is proud to hold the title again in 2015 as the largest
contributor to MS research nationally, with a record $1.5
million investment made this year alone. As part of this
contribution, we set aside $500,000 to support WA based MS
research projects and due to the importance of research, our
determination will not waiver as we hunt down the cause and
cure for multiple sclerosis.
We will also be closing out our strategic footprint in WA,
resulting in 18 locations across the State, the most in the
Society’s history.
This work will see us finalising new facilities in the South
West and Perth’s northern suburbs – key areas to complete
our Western Australia footprint, to provide quality and
convenience for people living with MS in this State.
For the South West, that will mean a new services hub in
Bunbury offering a base for a health care team to provide
therapy and counselling, an Outreach Group and the delivery
of further community services and programs.
I look forward to providing you more detail around our northern
suburbs plans soon, once they are finalised. But I can tell you
today that our plans are to provide allied health care and high
support accommodation in that area.
In further good news, the State Government has confirmed
they wish to honour our request to provide us with land in
the Shenton Park area for high support accommodation.
These initiatives will meet the Society’s accommodation and
services needs for the next decade.
So what about the National Disability Insurance Scheme
(NDIS), and how will our work here shape our future?
Well we now have a broad framework of services and support
to help people living with other neurological conditions; in fact
we have been doing this for a number of years now. So when
the NDIS rolls out in full next year, we will welcome the NDIS
funding that participants with other neurological conditions
will bring us.
This new income stream will allow us to continue to support
people living with MS who are not eligible for the NDIS
funding. They are, mainly – the newly diagnosed, those
classified as low support and those who are 65 years and
over. Our analysis shows that only 30% of people living with
MS will be eligible for NDIS funding, so these tactics will be
critical to build the scale necessary to prosper.
Pleasingly, the work that we have conducted in the last decade
means that we find ourselves in a position of leadership in the
disability sector with an organisation of size and scale. I know
that I speak for all of our staff when I say that we see this
as a double positive. Firstly we will be able to support more
people living with the challenges of disability. Secondly we
will be able to broaden our charter and service offering for all
people with MS.
We are determined to put in the hard yards over the next two
years, to set us up for a strong and solid future for the next
decade and beyond.
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
Summer 2015 The MS Society of Western Australia

A message from the General Manager
– Member Services Sue Shapland
“I can’t change the direction of the wind,
but I can adjust my sails to always reach my destination.”
Jimmy Dean
Well I know I say this every year but where has the year gone!?
They say time flies when you are having fun, or are busy, and
2015 has been no exception. We have had great successes
again this year across the Society and many achievements
which we can be proud of.
The wonderful part about working here for me is I get to meet
so many inspirational people living with MS while working with
so many enthusiastic staff members across all departments.
We are very fortunate at MSWA to be able to continually grow
our services and expand our footprint, resulting in better
coverage and greater opportunities for our Members.
We sometimes don’t have time to actually reflect on some of
our great achievements as we just get on with the next job.
In November we had three young ladies from Victoria, who
are working on a project to build a supported accommodation
and slow stream rehabilitation facility for younger people, visit
our Hamilton Hill facilities. I felt so proud as the staff and
residents showed off these two facilities. The visitors were
clearly blown away with what we have achieved and by how
‘homely’ the units are. They took many photos as reminders
of their visit.
The National Disability Insurance Scheme (NDIS) trials in WA
are going well and really opening up new opportunities for
eligible participants. Mark Douglas, NDIS Project Officer, has
provided us with another update in this edition of the Bulletin.
As we learn more about how the ultimate scheme will roll
out in WA, we will be able to run forums to ensure that our
Members know what the NDIS is, how to check if you are
eligible and what types of supports you may want to consider
to support you in achieving your goals.
There has been so much change this year across the sectors
including health with the opening of the state of the art Fiona
Stanley Hospital and more recently the new Midland Hospital
replacing the Swan Districts Hospital. Coming up next will be
the very welcome new Princess Margaret Hospital for children.
MSWA has once again led the way in funding MS research
in Australia with a $1.5 million contribution, including a
generous $0.5 million allocated for WA based projects via
a WA managed Research Funding Round. We will keep you
posted in Bulletin about the researchers who were successful
in receiving funding for their projects
2016 will be another very exciting year. The Bunbury service
centre and hub will be built and we will be able to share
our plans for a centre and supported accommodation in the
north metro area. For the newly diagnosed and low support
Members, we will be promoting some new Peer Support
Group opportunities as well as a series of Information Forums
and much more.
I do hope that you have some down time over the festive
season as we head into another New Year! I hope you stay
cool and safe.
Please remember that our Member Services staff are here
to help with information and advice. The switchboard here at
Wilson is closed over the holidays but for non-urgent contacts
you can ring the numbers provided below or via the contact
form on our website, mswa.org.au/get-in-touch which will
be monitored by staff.
MSWA Christmas closure
Our office is closed for the Christmas and New Year holiday
period from Friday, 18 December 2015 and will re-open at
8.30am on Monday, 11 January 2016. However, some staff
will be returning before this date.
If you have been newly diagnosed and require information
about MS or training on therapies, please contact our
on-call Nurse on 0458 362 188, or for counselling services
please call 0458 999 422. For enquiries about in home
supports please call 0417 982 814.
These are not emergency services
and are only available during office
hours over the holiday period.
You can also reach us via website at mswa.org.au/get-intouch.
This will be monitored by the Member Services staff
over the break.
If you have an urgent situation please call your local GP,
nearest hospital or Health Direct on 1800 022 222, or the
Crisis Line on 9381 5555.
The MS Society of Western Australia Summer 2015 5

Annual General Meeting 2015
THE ANNUAL GENERAL MEETING OF THE MS SOCIETY
OF WA, HELD AT THE WILSON CENTRE, THURSDAY,
22 OCTOBER 2015: A RECORD RESULT AND A NEW
DIRECTION FOR THE SOCIETY IN READINESS FOR THE
NATIONAL DISABILITY INSURANCE SCHEME (NDIS).
Dr Greg Brotherson
“A progressive and incurable condition such as multiple
sclerosis means that each individual will experience their
own personal journey.” Marcus Stafford, CEO
That the Society was seeking an endorsement by financial
Members and Associate members to expand its provision of
services to include people with other neurological conditions
had been circulated by direct mail leading up to the AGM. An
explanatory ‘Letter from the Board’ had also been included
in the previous issue of your Bulletin. The cause was the
rollout of the NDIS by the government, and to accommodate
this scheme a change to the Society’s Constitution was
necessary. Interest was therefore high and the meeting was
well attended.
The Society’s President, Mr George Pampacos, welcomed
everyone, called for apologies, the confirmation of the
2014 AGM minutes, and asked if there was any business
arising from these minutes (items 1 to 3 on the agenda).
There were none.
With housekeeping matters concluded, Mr Pampacos said
he was pleased to report that the financial year to 30 June
2015 had been a record-breaking year for the Society, as
well as one of supporting the Membership and preparing for
the NDIS.
In his published report Mr Pampacos said that having met
with Members throughout the year, what he had found most
significant was the wide-ranging spectrum of the condition.
There is the Member with progressive MS for 20 years who
has lived in a wheelchair throughout this time. There is the
professional who, while grappling with a stressful career
worries that the numbness in his arms and legs may impact
on his mobility. Or the young mother, recently diagnosed,
her energy sapped by the daily fatigue, trying to battle
the uncertainty each day brings, let alone the unknown,
frightening journey of the years ahead.
The Society therefore allocates its resources to meet these
wide spectrum of needs, Mr Pampacos continued, building a
strategic footprint that in the country includes the construction
of a new administration and service hub in Bunbury, and
a new accommodation facility planned for Albany. In the
metropolitan area, planning is well underway for new service
and supported-accommodation hubs in the western and
northern suburbs.
To underpin this expansion program, Mr Pampacos said that
2015 was again a year of records. He was pleased to announce
an increase of nine percent in Member Service hours, and
overall the Society had provided 568,082 hours of service and
care — an amazing 1,556 hours of support each day!
Another record was a further 20% increase in the contribution
the Society made to research — amounting to $1.5 million.
This again not only made the Society the largest contributor to
the national research budget, but also the largest MS Society
in Australia. Our research funding enables real and important
research to help people with multiple sclerosis live better on
a day to day basis.
Mr Pampacos turned now to discuss our sister association,
the MS Society of South Australia and Northern Territory
(MSSANT), who he said had fallen on hard financial times (to
within 10 days of closing). Supported for the past 16 months by
the WA Society’s resources, our CEO and management team,
Mr Pampacos said he was pleased to report that MSSANT had
recorded a small profit for the first time in 10 years, increased
its Client Services and made a small contribution to research.
Mr Pampacos then called on the Treasurer, Mr Peter Wright,
to present the financial report. Mr Wright said he was pleased
to announce that the Society’s surplus was $4,739,440,
reflecting another successful year. This surplus is particularly
pleasing as it will support and enable the strategic footprint
outlined by the President (above).
Mr Wright stated that the total income of the Society was
$41,249,681, achieved through government contracts,
support payments and grants, with additional income from
Marketing and Fundraising contributing $25,665,801.
Net expenditure on services to Members has increased by
$2,039,993 (a 10% increase), including a record research
contribution of $1,500,000.
6
Summer 2015 The MS Society of Western Australia

The Society’s balance sheet also reflects a very healthy
increase in net assets of 27% to $22,376,992. Total assets
increased by 22% to $28,935,518. Mr Wright concluded
by encouraging the Membership to read the annual audited
Financial Statements, particularly the Statements of
Comprehensive Income. These provide a detailed breakdown
of income, costs and net contribution by function.
Mr Marcus Stafford then presented his Chief Executive
Officer’s report by power-point presentation. In his published
report Mr Stafford said that although the State of Western
Australia this year navigated in an uncertain environment of
falling commodity prices, dropping GST revenue and fears
about job security, for the first time the Society’s annual
revenue had exceeded $40 million. This record-breaking
performance is very pleasing indeed, for never before has
such a well-rounded performance been so important.
This performance enabled the Society to continue balancing
the interests of all stakeholders. A progressive and incurable
condition such as multiple sclerosis means that each
individual will experience their own personal journey. As their
needs change over this journey, the Society services are here
to match those needs.
This year, at a quantitative level, Member services to people
with multiple sclerosis continued to grow exponentially
by nine percent. Accommodation and respite continues to
grow with particularly high occupancy rates within both our
metropolitan facilities and Bunbury. The healthcare team
posted an outstanding result for customer satisfaction. And
the Society’s contribution to research is a record in Australia.
These are real things for real people, Mr Stafford said.
Our balance sheet has also given us the confidence to set our
sights on closing out an ambitious strategic plan which includes
growing our allied healthcare services and accommodation
presence in both the metropolitan and country areas; and
preparing the strongest foundation in anticipation of the full
rollout of the NDIS. This new marketplace will threaten the
survival of organisations without scale or the ability to attract
clients to their store in a world that relies on specific customer
revenues flowing from the disability marketplace.
Item 7: Business on Notice.
Special Resolution to amend clause 3.1 of the Constitution.
Mr Pampacos said that the NDIS looms as the biggest social
reform within the disability sector in Australia’s history. In this
new environment people living with a disability will receive
funding directly from the government and then exercise their
choice and control about how and who will provide that service.
The introduction of the NDIS has therefore prompted a change
to the Constitution to enable the Society to offer its services,
on commercial terms, to people with other neurological
conditions and comparable disabilities.
The new wording of clause 3.1 will allow greater flexibility in
determining the scope of the Society’s operation in general
and will allow the additional funding delivered by people
with other neurological conditions who choose the Society
as their provider, to be directed to assist people living with
multiple sclerosis; particularly the newly diagnosed and other
Members with low-support needs who are yet to qualify for
the NDIS; and people over 65 years of age who are ineligible
for the scheme.
continued over page
The MS Society of Western Australia Summer 2015 7

The proposed wording to be added to the Constitution is
underlined:
3.1 The objects and purposes for which the Society is
established are:
(a) To meet the needs of Members, Provisional Members and
Prospective Members, from the resources of the Society.
(b) To provide from time to time such facilities as the Board
considers necessary or desirable to meet the needs of
Members, Provisional Members and Prospective Members
throughout Western Australia.
(c) To employ such paid, voluntary or seconded staff as
are necessary or desirable for the attainment of the
objects of the Society and, through the Board, to supervise
such staff.
(d) As far as the law will permit and subject to the provisions
of all relevant Statutes, Rules, Regulations and by-laws
and of all licences issued in pursuance thereof, to generate
income and to collect funds and to accept donations,
subscriptions and bequests to further the aims and objects
of the Society.
(e) To register as a provider of support services under
programs administered pursuant to the National Disability
Insurance Scheme Act 2013 (Cth) or any similar scheme
that allow eligible persons (NDIS Participants) the
flexibility to individually retain eligible service providers
using funds allocated to them as part of the relevant
scheme (NDIS).
(f) To use the facilities, resources and staff of the Society
to offer (on reasonable commercial terms) services to
NDIS Participants who have been diagnosed with Multiple
Sclerosis, other neurological conditions or diseases with
comparable disabilities or which are otherwise ancillary
to services provided by the Society (whether or not the
NDIS Participant is a Member, Provisional Member or
Prospective Member).
(g) To apply all funds held by the Society towards the
welfare of the Society, its’ Members, Provisional Members
and Prospective Members, non-Member clients and its
administration and running costs.
(h) To make known to the general public, by any desirable
means, the aims and objectives of the Society.
(i) To educate the Members, Provisional Members,
Prospective Members, Associates and the public, about
Multiple Sclerosis and other neurological conditions and
diseases with comparable disabilities.
To provide all Members, Provisional Members, Prospective
Members and Associates with access to information
regarding the achievements in and the progress of research
into Multiple Sclerosis, other neurological conditions and
diseases with comparable disabilities.
To support research work towards the prevention,
treatment, control and cure of Multiple Sclerosis, other
neurological conditions and diseases with comparable
disabilities.
(j) To do all such acts and things as are necessary or
convenient for or conducive to the attainment of all or
any of the aforementioned objects and purposes of
the Society.
Moved: George Pampacos; Seconded: Bill Hassell.
The President requested that cards in favour of the amendment
of Clause 3.1 of the Constitution be shown. 36 votes were
counted with 50 proxies in favour giving a total of 86 in favour.
The President requested that cards against the amendment of
Clause 3.1 of the Constitution be shown. There was one vote
against. The motion was carried 86/1.
Item 8: Confirmation of the election of persons to the
Board of Directors.
In accordance with the Constitution the Society had called
for nominations for the election of Directors from Financial
Members and Associates. Nominations were received from Dr
Greg Brotherson, and as no other nominations were received
he was declared duly re-elected.
Item 9: Appointment of Auditor for the coming year.
It was proposed, moved, seconded and passed that the Board
of Directors would call for tenders from interested accounting
firms, and appoint an Auditor.
Item 10: Questions from Members.
As there were no questions Mr Pampacos thanked everyone
for their attendance, invited everyone to morning tea and
closed the AGM.
Copies of the Society’s Annual Report and audited
Financial Statements, and particularly the Statement
of Comprehensive Income, are available on request,
call (08) 9365 4888.
8
Summer 2015 The MS Society of Western Australia

MSWA CEO wins
national award
We are delighted to share the news that our CEO Marcus
Stafford was recently recognised as one of the top leaders in
the country, winning the Not-for-Profit Manager of the Year
as part of the Australian Institute of Management’s (AIM)
Excellence Awards.
We sat down with Marcus to talk with him about his award.
“This award is a great honour not only for me, but I also accept
it on behalf of the Board of Directors, management, staff
and the thousands of people with MS and other neurological
conditions who we are here to serve,” said Marcus.
“Our team of more than 500 employees working throughout
Western Australia provide the very best care and support to
people living with MS. This award recognises the effort and
care provided by everyone in our organisation, every day.
“It is also pleasing to see not-for-profit organisations being
given a national forum where they can be recognised as
being part of Australia’s best management within business,
government and industry.”
Since taking over as CEO in 2002, Marcus and the team
have transformed MSWA into one of the best performing
not-for-profits in WA.
AIM WA CEO Gary Martin has congratulated Mr Stafford on
the win and said it was great to see a WA winner.
“Marcus has instituted substantial changes for his
organisation. Under his leadership, the organisation has
grown from a position of questionable sustainability to a
position of profit and strength,” Professor Martin said.
“Marcus is a truly inspirational leader with strong clarity of
vision and a collaborative and courageous leadership style.”
After being contested nationally for the first time in 2014, the
AIM Excellence Awards are unique amongst business awards
as they honour the achievements of managers as individuals,
regardless of their standing, location or industry.
Congratulations Marcus on your significant achievement.
NDIS update
The National Disability Insurance Scheme (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.
At MSWA we wholeheartedly welcome this change as it
allows our Members to choose who will provide them with
the services they want or need. Based on their existing
relationship with MSWA, we strongly hope our Members
continue to choose us as their service provider.
Today, in addition to the support and services we provide to
people living with MS, we extend care to people living with
over 30 other types of neurological conditions.
At the conclusion of the current trials, people with other
neurological conditions will ‘bring dollars to our door’.
They will become customers shopping in the disability
marketplace. Funds derived from providing these services
to others will allow us to continue to provide and grow our
services and support for people living with MS.
Thank you for the opportunity to change our Constitution.
It allows us to secure our future within this exciting
environment of choice and control for people with
disabilities.
The MS Society of Western Australia Summer 2015 9

Round-up of research
and other items of interest
Sue Shapland RN, BN
Study to find if chocolate can
help treat MS
Oxford Brooks University will
study 40 people with MS who
will be given hot chocolate every
day as part of a trial funded by
the UK MS Society. The study
will explore if the drink, rich in
flavonoids which are thought
to reduce inflammation, can
reduce fatigue.
From the MS Society Canada:
Researchers link the ‘clock’ hormone melatonin to
seasonal MS relapses
Relapse activity follows the seasons. MS attacks are generally
more frequent in the spring and summer. The reason for this
seasonal pattern is unknown. Recently, a team of scientists
from Argentina and the United States identified a possible
candidate, the hormone melatonin. Melatonin levels peak
over the fall and winter months and then drop off in spring
and summer.
The authors provide strong evidence that melatonin protects
against MS relapses, decreasing the number and severity of
relapses during the fall and winter months. This protective effect
is diminished in spring and summer as melatonin levels subside.
MS Scientific Research Foundation-funded study
identifies specific type of white blood cell involved in MS
MS research has largely focused on the role of T cells in the
disease process, but attention has lately turned to another
type of white blood cell called B cells.
The researchers found an increased number of pro-inflammatory
B cells containing GM-CSF, a cytokine called granulocyte
macrophage colony-stimulating-factor (GM-CSF), in untreated
people with MS compared to healthy controls.
In cell culture experiments, they found that this specific type
of B cell interacted with and turned on other inflammatory
cells that are known to activate disease-causing T cells.
The remarkable potential for B cell treatments to treat MS
and improve quality of life speaks to the importance of
understanding how certain types of B cells contribute to
both relapsing and progressive MS disease; why people who
receive B cell treatments do better overall; and how B cells
treatments can be fine-tuned to yield the greatest benefit
while avoiding harmful side effects.
From the UK MS Trust:
Could vitamin D make disease
modifying drugs more effective
against MS?
Vitamin D and disease modifying
drugs (DMDs) both have effects
on the immune system. This study
sought to see if vitamin D levels
could help to reduce MS disease
activity further in people also taking
one of the beta interferons - glatiramer acetate or fingolimod.
In this study involving 324 people on therapies, vitamin D
blood levels were compared with information on relapse, MRI
lesions and disability progression. They found that in people
taking DMDs, those with higher blood levels of vitamin D had
less new inflammatory events such as relapses and active
brain lesions. This effect was not seen in participants taking
glatiramer acetate.
How common is nerve pain
in early MS?
This German study involved
377 people with MS, who had
been diagnosed for on average
4.2 years, and looked into how
common nerve pain was in
early MS. They found that 4%
of participants had scores that
indicated they were experiencing
nerve pain. A further 9.5% had scores where nerve pain could
be a possibility but wasn’t confirmed as the type of pain.
The researchers conclude that as the participants
experiencing nerve pain also had higher levels of depression
and fatigue, treatment of the pain should take these other
factors into account.
10
Summer 2015 The MS Society of Western Australia

Could intermittent steroid treatment help people with
progressive MS?
This small study in Denmark, involving 15 people with primary
progressive MS and 15 people with secondary progressive
MS, investigated the use of intermittent oral steroid treatment
in people with progressive forms of MS. All participants took
oral methylprednisolone at a dose of 500mg for three days
every fourth week for a period of 60 weeks.
The study found no change in the levels of markers of
inflammation after intermittent steroid treatment. There were
improvements seen on the MRI brain scans. There were also
significant improvements in EDSS scores and also in scores
in several of the questionnaires, most notably in the physical
sections of these, such as timed walking tests.
The authors concluded that intermittent steroids may be
beneficial for people with progressive MS. However, this
was a small study and did not use a control group. Generally
the long-term use of steroids is not recommended due to
well-known side effects.
Emotional changes in people
with MS
This French study, involving 60
people with relapsing-remitting
(RRMS) MS and 41 with primary
progressive MS, found that
emotional changes are common
in both groups and can be found
in people who do not meet
the criteria for a diagnosis of
depression or anxiety.
As even subtle emotional changes can impact on quality of
life the researchers conclude that a health professional’s
ability to recognise these smaller changes, not just the more
obvious major depression and anxiety, could help people with
MS access the support they need to manage any emotional
changes they are experiencing.
Approximately 25% to 33% of participants had other mood
symptoms such as emotional blunting (a lack of emotional
reaction) or decreased emotional control.
Levels of depression, anxiety and other emotional changes
(as determined by scores on the mood questionnaires) were
not related to levels of disability, fatigue, cognitive symptoms
or length of time someone had lived with MS. In people with
RRMS a lack of emotional control was related to a decrease
in quality of life.
Can menopause affect MS?
This study involved 724 women, about half of whom were
post-menopausal. This study shows that menopause appears
to have a small effect on MS and levels of disability. However,
it is important to note that the increasing levels of disability
only equated to a one point change in EDSS score over a
period of 10 years.
The authors suggested this change might be due to
hormone levels, in particular levels of oestradiol (which is
a type of oestrogen), which some studies have shown to
be neuroprotective. The use of HRT, which replaces and
increases the levels of hormones lost during menopause, by
participants in the study was low.
The researchers suggested that a larger study with more
women using HRT would be needed to show if the effects
observed were related to hormone levels and if HRT could be
neuroprotective for women with MS.
Read more at:
mswa.org.au/
researchupdate
The MS Society of Western Australia Summer 2015 11

What do they mean?
Sue Shapland RN, BN, Cert. MS Nursing.
Members have said they would like to know what some of the
most commonly used MS jargon actually means. Often when
looking up the meanings of these words, even their definitions
need explaining!
Cerebro-spinal fluid (CSF): the watery fluid that is produced
in the brain and continually washes over the brain and
spinal cord providing nutrients and cushioning to protect
the structures.
Lumbar Puncture (LP): a fine needle is inserted into
the spinal canal to collect CSF for analysis, i.e. looking for
abnormal cells and signs of inflammation.
MRI: see the more detailed article on page 13 of this Bulletin.
Relapsing-remitting MS (RRMS): the most common type
of MS diagnosed. This means people have periods when
symptoms flare up aggressively – known as a relapse,
attack or exacerbation. This is followed by periods of good or
complete recovery – a remission.
Secondary progressive MS (SPMS): many people initially
diagnosed with RRMS find that over time, often quoted as
10 years, the frequency of relapses decreases but disability
gradually increases. As this follows RRMS it is known as
SPMS. People’s experiences vary widely. Note: There has
been a positive impact due to earlier diagnosis and the
introduction of the various MS therapies use for RRMS, which
aim to reduce the number and severity of relapses.
Primary progressive MS (PPMS): Approximately 10%
of people diagnosed with MS have this form of MS in which
disability increases from the outset. Various people experience
PPMS differently. While some have a persistent increase in
disability, others may stabilise or have a gentler worsening
of symptoms.
Lhermitte’s sign: a sudden sensation, that feels like an
electric shock, which passes down the back of your neck and
into your spine, and may then affect your arms and legs. It
is usually triggered by bending your head forward towards
your chest. It can be a symptom of multiple sclerosis but also
occurs in other conditions.
Uhthoff’s phenomenon or sign: the temporary worsening
of MS symptoms – most often visual but sometimes motor
(movement or strength) or sensory - caused by an increase in
temperature. The visual symptoms may include double vision,
reduced sharpness of vision, or black spots appearing before
the eyes.
Evoked potentials tests: these electrical tests measure the
speed of nerve messages along sensory nerves to the brain
and are sometimes used in diagnosing MS.
These include visual evoked potentials (VEP) which looks at
messages sent from the eyes to the brain in response to a
flashing chessboard pattern on a computer screen.
Testing the speed of sensations from the skin to the brain,
somatosensory evoked potentials (SSEP), involves a series of
tiny electric shocks to parts of the limb or limbs. Measuring
the speed of transmission can show delays which can indicate
damage to the nerve pathway/s.
Expanded Disability Status Scale (EDSS): is a method of
measuring disability in MS and monitoring changes over time.
It is widely used in clinical trials and in the assessment of
people with MS.
The EDSS scale ranges from 0 to 10 in 0.5 increments that
represent higher levels of disability. Scoring is based on an
examination by a neurologist.
MS hug: a symptom of MS where you feel as if you have a
tight band around your chest or ribs or a feeling of pressure
on one side of your torso. Some people report they find it
painful to breathe.
Any chest pain should be checked out by a doctor unless you
are sure of the cause. The MS hug is not dangerous but any
chest pain should be taken seriously just in case it is being
caused by something else like heart or breathing problems.
It is always best not to assume that everything you are
experiencing is due to your MS, but to speak to a health
professional straight away.
Reference: UK MS Trust A-Z mstrust.org.uk/a-z
12
Summer 2015 The MS Society of Western Australia

What is Magnetic
Resonance Imaging (MRI)?
Lou Hatter, MS Nurse Specialist
An MRI is a sophisticated machine used in neurology to help
‘see’ inside the central nervous system (CNS). The CNS is made
up of three parts – the brain, the brain stem and the spine.
The MRI works by detecting the magnetic particles in atoms
within cells and sending magnetic pulses at different rates
and strengths of the electromagnetic pulse through the
body. These are picked up by the electromagnetic receiver.
The magnetically charged particles in the body’s tissues get
lined up with the magnetic pulse and then return (relax) to
their positions once the magnetic field is turned off; this is
detected by the machine.
There are many pulses including long-strong pulses,
short-strong pulses, and long and short weak pulses. The
MRI programmers use these different pulse/spin sequences
to make the different tissue structures in the body stand out
from each other.
In 20+ years of studying MRIs, the radiologists have
discovered that different tissues, e.g. brain, bone, liver,
blood, etc., all show up best using different combinations
of pulse techniques. They have also discovered that certain
combinations of techniques show abnormalities like tumours
or scars for example.
When you have an MRI scan, they run a number of different
scans. There are standard ones, used for pretty much all
medical conditions, called T1 and T2 sequences. This depends
on how they measure the relaxation of the magnetic particles.
Additional scan types are constantly being developed, but the
most commonly used additional scan type for MS investigations
is called Fluid Attenuated Inversion Recovery (FLAIR).
The way MRI works is that different types of matter or tissue
give off different levels of energy when placed in a magnetic
field. The computer takes pictures of what is being scanned in
‘slices’ and collects the energy signal from each slice. Because
of some of the loud banging noises the scanner makes, it can
also work out the signal from small cubes of each slice. These
cubes are called voxels (short for volume pixels).
Each slice provides the information for one image and each
voxel provides the information for one pixel in that image.
The whole process uses very advanced mathematics, but
ultimately, the higher the overall signal from a voxel, the
brighter the pixel is on the final image (and the lower the
signal, the darker the pixel).
In a T1 scan, grey matter gives off a low signal and looks
darker in the images than white matter which gives off a
higher signal and looks pale grey. The cerebro-spinal fluid
(CSF), the fluid in the CNS, gives off the lowest signal and
looks black.
Everything is reversed in a T2 scan. Grey matter looks pale
grey, white matter looks darker grey and CSF looks white.
FLAIR is a clever adjustment of a T2 scan which suppresses
the signal from CSF. This means grey matter looks pale grey,
white matter looks darker grey and CSF looks black.
FLAIR is part of the T2 imaging, with a twist. Its purpose is to
distinguish things that border on areas of fluid (such as CSF
in the ventricles).
Different lesions give off different signals. A white matter MS
lesion gives off a high signal in T2 and FLAIR scans, looking
like a ‘white spot’ against the white matter which is otherwise
relatively dark in these scans.
T1 imaging is no good for spotting MS lesions unless the
lesion has caused the area to ‘die’, or ‘atrophy’, in which case
it is called a ‘black hole’ – because of its appearance.
The terms ‘hyper intensity’, ‘hyper intense’, ‘high signal’, etc.,
all refer to the fact that somewhere is brighter/whiter than
it should be; hyper = more. ‘Hypo-intensity’, ‘hypo-intense
area’, refers to somewhere being darker than it should be;
hypo = less. The relevance of these areas depends on their
size, shape, location and the type of scan.
CSF bathes the brain which means that all the sulci of the
brain are full of CSF and thus there is a lot of white on T2
images. Spotting a lesion in amongst lots of perfectly normal
white stuff can be tricky however; it is easier in FLAIR images
– because there is less white as the CSF appears as black.
(Some small white spots can be perfectly normal, they are
usually blood vessels.)
Sometimes, the neurologist requests a scan with contrast.
A T1 scan is taken after an injection with a ‘contrast agent’,
usually gadolinium, which looks bright white on the scan. The
CNS, i.e. the brain and spinal cord, is protected by the blood
brain barrier (BBB) which stops harmful things from getting
in; gadolinium normally can’t get through.
In MS, cells from the immune system pass through the blood
brain barrier and attack the myelin coating of nerves, causing
inflammation and damage: a lesion. While this is happening,
the lesion is called ‘active’, ‘enhancing’ or ‘contrast enhancing’.
The gap the immune system has caused in the BBB allows
gadolinium to get in. If the BBB is intact there should be no
bright white signs of gadolinium inside the brain or spinal cord. If
there are, these show where there are breaches, in other words,
where the immune system is actively causing new damage.
Contrast is used to show up very new lesions, typically newer
than two to six weeks, and to help show which lesions are
active and which aren’t as this can be important for deciding
on treatments.
Adapted from MS Society UK.
The MS Society of Western Australia Summer 2015 13

NDIS WA Trial Sites Update –
November 2015
Mark Douglas, MSWA Project officer,
National Disability Insurance Scheme and My Way Trials
As mentioned previously, in Western Australia we are trialling
two different models of the NDIS – the Commonwealth trial
(NDIS) and the State-based trial (NDIS – My Way).
An independent evaluation of the trial of the two models in
WA is being conducted by Stanton’s International and an
interim report was due in October 2015, but this has been
delayed. The information gathered will be used to compare
and contrast the two trial site models. Federal assistant
Social Services Minister Mitch Fifield said in June this year
that any decision about the future model for disability support
in WA would be made jointly with the WA government after
independent evaluations of each trial.
Across WA, 1,700 people have been identified as eligible to
become participants in the Commonwealth NDIS hills area
and approximately 1,400 of them now have plans in place.
There is still room for approximately 1,500 more to gain
access to the Commonwealth scheme if deemed eligible.
The State-based (NDIS My Way) trial has almost 800
participants in the Lower South West, Busselton and
surrounding areas, and no figures are yet available for the
Cockburn Kwinana extension site that commenced in July
this year.
Overall these figures represent lower participant numbers
than originally expected. Exact reasons for this are not known
but it has been suggested that the original projected numbers
may have been overestimated by the Productivity Commission
in their report.
Australia-wide, more than 17,000 people have now gained
access to the NDIS. When full rollout of the scheme is
completed in July 2019, it is expected the numbers will be
closer to 400,000 people.
With full rollout of the scheme due to commence Australia-wide
from July next year, only Victoria and New South Wales have
now signed bilateral agreements with the Commonwealth
Government and have released details on how the NDIS will
be rolled out in their states. Information on the full scheme
rollout details provide potential participants with some degree
of certainty as to when they may be able to access supports
provided by the NDIS.
If you are living in one of the trial site areas and haven’t yet
applied for access to the scheme, I would encourage you to
do so now rather than waiting for the full rollout to commence.
The numbers entering the scheme during the full rollout will
be enormous and delays may be experienced.
The planning process can be overwhelming, lengthy and
confusing. MSWA staff are here to help our Members,
as potential participants. Our experienced Social Welfare
Department staff are here to help you understand and
navigate the NDIS processes. They can assist you with
pre-planning information which will ensure your plans contain
the full information and reflect your support requirements.
MSWA has always been here to assist our Members and
our recent experience shows that having the support of our
experienced staff results in better or more comprehensive
plans for individual participants. In early 2016 we will be
conducting a number of NDIS information and pre-planning
advice sessions; we will keep you posted!
If you would like any further information, please contact
Project Officer for Member Services – Mark Douglas on
9365 4824.
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
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/
14
Summer 2015 The MS Society of Western Australia

There’s an
app for that!
It’s not uncommon for anyone from six to 60 to have a
smartphone these days. They’ve become part and parcel of
everyday life and one of the best ways to use smartphones
is to download applications, otherwise known as ‘apps’. Apps
have made life a lot easier for us and there are finance apps,
game apps, reading apps, cooking apps – basically every
kind of app imaginable. Here we bring you five free apps that
will improve your life in one way or another!
1. Healthdirect – Australia’s free health app that helps you
make informed decisions about your health. You can use
the Healthdirect app to check your symptoms, find a health
service and get trusted health information.
Compatibility: iPhone, Android
2. Elevate – The brain training app was designed to improve
focus, speaking skills, processing speeds and more. Each
person gets a personalised training program with loads of
interactivity and smart daily motivation reminders. It has
been downloaded over five million times and was named
the best free iPhone app in 2014.
Compatibility: iPhone, Android
3. HabitBull – Break a bad habit or develop a good one with
HabitBull. It’s an alarm app for your habits and is possibly
more suited to developing a good habit than beating out a
bad one!
Compatibility: Android
4. BrainyApp – BrainyApp was developed by Alzheimer’s
Australia in partnership with Bupa Health Foundation to
raise awareness of the risk factors for Alzheimer’s disease
and other types of dementia, and to help you be ‘brain
healthy’. Use the BrainyApp survey to find out how brain
healthy you are and complete the activities to watch your
brain health score rise.
Compatibility: iPhone, Android
5. Epicurious – This app enables food lovers to search for
professionally created and tested recipes, make interactive
shopping lists, follow step-by-step stove-side instructions,
and more.
Compatibility: iPhone, Android, Windows, Kindle
NDS News Update
Funding available for people with
disability and their carers to attend
the NDS WA Conference 2016
NDS is pleased to advise that, through a Lotterywest
grant, funding is available to assist people with disability
to attend the NDS WA Conference 2016.
The conference ‘Shaping the Future - Preparing for
Change’ will be held on 17 and 18 March 2016 at the Perth
Convention and Exhibition Centre. This important disability
sector event offers a comprehensive program focusing on
the changing landscape for disability service provision in
Western Australia. The conference program is available on
the NDS website.
The funding will cover the cost of registration for people
with disability and their carer. For people with disability
living in regional and remote areas, the funding will also
cover the cost of accommodation and travel.
Support to attend the conference may be provided in
the form of full or part funding. The amount available to
individuals will be dependent upon the number of people
who apply for funding assistance.
To apply, please email your completed Expression of
Interest form, now available for download on the NDS
website, to Julie Walton at julie.walton@nds.org.au by
Monday, 18 January 2016.
If you have any questions about the funding, please contact
Julie by email on julie.walton@nds.org.au or by telephone
on 02 9256 3115
For general enquiries about the conference, please
contact Helen Moorhead on 08 9208 9803 or email
WAConference@nds.org.au
The MS Society of Western Australia Summer 2015 15

Trials currently
recruiting
Enhancing balance and gait in people living
with MS
The Centre for Restorative Neurology WA and Sir Charles
Gairdner Hospital are conducting clinical trials in the
rehabilitation of people living with MS.
To participate in this study, you need to:
- Be 18 years of age or over
- Have definite relapsing-remitting or a progressive form
of MS
- Have mild to moderate balance impairment (including falls)
- EDSS score < 6
This study aims to evaluate if combining brain stimulation
with balance therapy will improve mobility and independence
among people living with MS who have a balance and/
or walking impairment. Interested participants will have to
attend two weekly sessions of balance therapy for six weeks
each lasting 90 mins.
Half of the participants will receive the brain stimulation while
the other half will receive sham brain stimulation prior to
balance therapy. To date there have been no adverse effects
associated with the brain stimulation.
For more information, please contact Dave Hathorn
or Jenny Eisenhauer at the WANRI clinic on
9346 3966 or at dave.hathorn@health.wa.gov.au
or jenny.eisenhauer@uwa.edu.au
Primary Progressive MS Study
Request for Voluntary Participants
A study on Primary Progressive Multiple Sclerosis (PPMS) is
being undertaken at the Menzies Institute for Medical Research.
While there are now a number of immunotherapy treatments
available for people with relapsing remitting MS, little
progress has been made on treatments for people with
Primary Progressive MS (PPMS). Understanding the causes of
PPMS can ultimately lead to treatments and prevention.
The study requires participants who have:
• Primary Progressive MS
• Aged between 18 – 59 years
• Resident in Australia
Participation involves the completion of questionnaires at
home, a phone interview and the provision of a blood sample
at a local pathology service.
If you are interested in participating in this study or would
like further information, please contact Susan Dobson on
(03) 6226 4269 or at ppms.study@utas.edu.au or visit
menzies.utas.edu.au/ppms.
16
Summer 2015 The MS Society of Western Australia

Thermoregulation
Sandra Wallace, Occupational Therapy Manager
The MSWA Fact Sheet on Thermoregulation states that “The
body’s ability to regulate its core body temperature, even
when the temperature of the environment changes, is called
thermoregulation”.
This is the mechanism through which our body maintains
warmth in cooler environments and cools off in warmer
environments. The literature varies in its reporting, but
more than half of people with MS report problems with body
temperature regulation. Feeling too cool is unpleasant, but
when too warm MS symptoms can exacerbate, even if only
temporarily. While everyone feels extremes of hot and cold,
a person with MS can have a smaller comfort zone before
feeling too hot or too cold. Some people feel the cold more
than the heat, whilst others feel the heat more than the cold.
Some feel both.
If you are sensitive to temperature changes, you may want to
monitor your food and drink intake. For example a hot drink
is warming and raises body temperature. If you are already
warm, you may benefit from a cold drink to lower your body
temperature. The same principle applies when choosing
between warm foods or cold foods. The body will warm to
digest a big meal, so smaller meals can have less impact on
body temperature fluctuations.
When it comes to exercise and general activity, it is obvious
to consider wearing cotton clothing that is more cooling than
synthetics fabrics. Some people have found benefits in using
cooling vests and cooling neck ties. Have a cold shower if
necessary, or use a fine water spray on the face and body.
Not all these suggestions suit everyone. As always, it can take
a bit of trial and error to find what suits you best.
The Air Conditioning Grant
Air conditioners assist by controlling the external environment.
If you are on a pension or low income you may qualify for the
Thermoregulatory Subsidy Grant through the Office of State
Revenue. This grant is paid once a year directly into your account
and is to help pay for the additional costs of running an air
conditioner, for heating or cooling, related to thermoregulation
difficulties. You must reapply every two years.
MSWA receives a block grant from Lotterywest to help
financial Members on low incomes (full pension) who do not
have an air conditioner already in their home. Eligibility criteria
apply. The grant is for up to $1,500, excluding GST, and costs
exceeding this must be met by the applicant. Funding is also
available to replace old air conditioners that can’t be repaired.
For more information or an application form please
contact the Occupational Therapy team on 9365 4888 or
email sandra.wallace@mswa.org.au
An Easy Pour Kettle
Emma Clifford, Occupational Therapy Assistant
The Occupational Therapy (OT) staff at Wilson recently had
a demonstration of a new kettle - ECCELLO.
The kettle doesn’t need to be removed from the weighted
cradle while pouring and it rotates on an arc to direct the
water to the cup. The unique handle design provides a
stable grip, the kettle is light when removed for refill and
has a stable base, improving safety. Whilst the function
of the kettle promotes ease of use and safety, the stylish
design more closely resembles a typical modern kettle.
This appliance may be useful for those who experience
weakness in their hands, wrist or arms and for those who
have to be seated or can only use one hand.
The company very
generously donated
four kettles to the OTs
at MSWA for a trial
and demonstration
purposes. Two were
also kindly donated
to Outreach and were door prizes at the Members’
Christmas Party.
Please contact the MSWA OTs on 9365 4888 if you are
interested in trialling an ECCELLO Kettle and for information
on how to purchase one.
The MS Society of Western Australia Summer 2015 17

Mandatory Reporting –
what is it?
Sandra Wallace, Occupational Therapy Manager
Driving is an ordinary daily activity for most Australian adults.
In WA many of us rely heavily on our own cars to get about.
The thought of not driving can trigger all sorts of worries:
a change in lifestyle, reducing social, recreational and
employment opportunities, loss of spontaneity and so on.
The Department of Transport view it a little differently. They
have the responsibility to ensure our roads are safe and that
those with a licence to drive are actually safe to do so.
Mandatory reporting legislation has been in effect for several
years, but there are new laws and clearer guidelines for health
professionals doing the assessing. This article attempts
to answer some of the questions frequently asked about
mandatory reporting requirements.
Why new driver medical standards?
Changes to driver medical standards reflect current
knowledge. A major literature review was conducted by the
Monash University Accident Research Unit, providing an
evidence base for the effects of various medical conditions
on driving ability and associated crash risk. They have been
collecting data for many years now. This has contributed
to the development of standards in the driver assessment
process and recommendations.
What type of health conditions might affect ability to
drive safely?
Driving is a complex task requiring good perception,
judgement and response times as well as physical capability.
Certain medical conditions, as well as some treatments
and medications, may negatively impact on driving ability.
Mandatory reportable medical conditions include any
medical condition, mental disorder or physical disability that
may impair a person’s ability to drive safely. Common
examples include:
• Neurological conditions including MS and epilepsy
• Diabetes
• Cardiovascular conditions
• Sleep disorders
• Alcohol and other substance misuse
• Vision and eye disorders
The presence of disease or a health condition does not mean
a person cannot drive. The standards focus on functional
ability, which is the impact on driving ability, rather than
diagnosis. These guidelines have been revised with respect
to multiple medical conditions and age-related change.
18
Summer 2015 The MS Society of Western Australia

Drivers have a legal responsibility to report their
medical condition/s
By legislation, drivers are required to report any medical
concerns that may impact on their long term driving ability.
When a person’s licence is due for renewal, or at initial
application, drivers may be asked to complete a declaration
regarding their health. Based on this information the licensing
authority can request a medical examination. All drivers have
a duty to declare their health status to the examiner. Failure
to report impairment to the driver licensing authority can have
insurance and legal consequences.
Commercial and private driving standards
Drivers of commercial vehicles undergo more stringent
standards because of the increased associated risk. This
may have employment implications for some drivers. The key
question: is there a likelihood the person will be unable to
control the vehicle and act or react appropriately to the driving
environment in a safe, consistent and timely manner?
How to report a medical condition (not just for people
with MS)
You can report a medical condition by either:
• Filling out the notification of a medical condition form found
on: transport.wa.gov.au/licensing/19056.asp
OR
• Writing a letter that includes:
• Full details of the medical condition you are reporting;
• Your full name and address;
• Your date of birth;
• Your daytime contact numbers; and
• Your driver’s licence number
• And post it to:
Mandatory Reporting Team
Department of Planning and Infrastructure
GPO Box R1290
PERTH WA 6844
The process
Once written notification has been received, the Department
of Planning and Infrastructure (DPI) will review the information
against the Standards and inform you in writing of any action
required. Possible actions include:
• No action required
• Your driver’s licence needs to be updated to reflect relevant
licence conditions, e.g. wearing prescription glasses
while driving
• You may be required to undertake and pass a medical
assessment. They will advise you who to see for this
• You may be required to take and pass a practical
driving assessment
You can call the MSWA OT Department on 9365 4888 if
you have any further queries or concerns.
Reference: Austroads (2012) Assessing Fitness To Drive for
commercial and private vehicle drivers, Austroads Ltd Sydney
multipleshirts
The MS Society of Western Australia Summer 2015 19

Mothering young children –
challenging, yet beneficial
Astrid Plumb-Parlevliet
Children in their early childhood years place a high physical
demand on their mothers and as a result these mothers are
predominantly preoccupied with tasks related to their young
children. Mothers with multiple sclerosis can have limited
physical and emotional capacity. It is important for these
mums to maintain their energy. This study looked at the
experiences of mothers with multiple sclerosis, who had at
least one child in their early childhood years. Ten mothers,
all with relapsing-remitting multiple sclerosis, participated
in this qualitative study; four major themes and eight
sub-themes were uncovered.
Theme
• Changing life perspective • Balancing life with MS
• Having children • Peer contact
Sub-themes
• Avoidance
• Seize the day
• Conserve energy • Support network
• Pregnancy decision • Dealing with motherhood
• Feeling judged
• Sense of belonging
These themes are a reflection of all of the study’s interviews
combined. It tells the overall story of living with multiple
sclerosis as a mother of young children.
Theme 1: Changing Life Perspective
After being diagnosed with MS, people go through a change in
life perspective. Initially the participants tried to avoid thinking
and dealing with their MS diagnosis. MS is an unpredictable
illness and therefore avoidance assists in maintaining
emotional well-being. Avoidance has been found to be an
acceptable coping strategy whilst MS has a mild influence
on life. Many of the participants avoided their MS diagnosis
by not disclosing their illness to others and/or by avoiding the
MS Society. MS is still in the back of their mind; nevertheless,
it is not actively present in daily life. After a while life with
MS is accepted and the focus in life is changed to make life
worthwhile. It is important to seize the day.
By not dwelling on MS, by living consciously whilst making
informed choices, and by doing things for themselves, the
participants showed the importance of seizing the day.
Changing their life perspective assisted them to stay mentally
strong and hopefully this will assist them in staying physically
strong as well.
Theme 2: Balancing Life with MS
Staying physically strong is important for people with MS.
Impaired physical functioning has a major impact on life and
this impact needs to be dealt with appropriately. Additionally,
stressful events increase the probability of relapse and
therefore need to be kept to a minimum. Consequently,
balancing is an important part of life for people with MS. The
participants talked about the importance of conserving their
energy and having a support network available for balancing
life with MS. It was hard to manage and conserve energy,
however, most of the participants tried to limit the number of
activities they engaged in. Most support was provided by the
partner of the participants. Yet other people stepped in when
the partner could not cope.
Theme 3: Having Children
MS symptoms can lead to physical and emotional coping
difficulties, which influence the motherhood experience. The
participants shared their experiences of having children. They
talked about the decision to become pregnant and how they
experience dealing with motherhood. Some of the participants
were already mothers when they were diagnosed with MS.
For the ones that did not yet have children before being
diagnosed, it sped up the decision to have children. However,
most reduced the number of children they originally wanted.
20
Summer 2015 The MS Society of Western Australia

While many of the participants chose to become pregnant
after their MS diagnosis, they found it hard to deal with MS
and motherhood tasks, as MS affected their ability to mother.
Planning was important to combat physical issues and fatigue.
Activities had to be put in place to occupy the children when the
mother did not feel well; however, it was not always achievable.
The experience of motherhood was influenced more by the
severity of MS than by the number of children. Mothers
were not able to look after their children when they were
experiencing new symptoms due to a relapse or when old
symptoms briefly resurfaced. Fatigue also played a part in
their ability to be a mother.
During these times, being a mother of young children was
hard as the children were not able to understand their
mother’s illness and still required attention. The mothers with
one child, when severely affected by their illness, were found
to struggle more compared to mildly affected mothers with a
number of young children.
Nevertheless, being a mother enriched and provided purpose
to the participants’ lives. Children kept their mother’s mind
off MS as they were too busy looking after their children.
As long as there is adequate support available during illness
complications and life with MS is properly balanced, the
psychological benefits of being a parent of a young child
could outweigh the physical demands. Being a mother could
therefore be beneficial to people with MS.
Theme 4: Peer Contact
The participants considered contact with peers important.
The participants relayed their feelings of being judged by
the community and occasionally by friends. All participants
relayed that it was easier to relate to other people with MS. It
gave them a sense of belonging and reduced their loneliness.
Furthermore, it could prevent them from comparing themselves
to the ideal mother and thereby reduce stress. By facilitating
more contact between peers, people with MS may be able to
better their mental health.
Research Conclusions
The findings indicated that a change in life perspective was
initially difficult for women with MS, yet necessary for their
psychological well-being. They had to be able to balance life
with a debilitating chronic illness in order to stay physically
and mentally strong. Mostly they required support from family
members to assist them with this.
Having children brought physical difficulties; however, it
assisted them in staying mentally strong. A reason also
considered whilst making the decision to have children.
To combat the feeling of loneliness, contact with peers was
considered to be normalising. Changing their life perspective,
adequately balancing life and MS, having children and peer
contact assisted these women in their pursuit to live contently
despite MS.
Hereby I would like to thank all the mothers who participated
in this study. I am honoured that you were willing to share
your experiences with me. Thank you for your time, especially
because life as a mother who has MS and young children is
already hectic enough. It was incredible to hear your stories.
Your experiences encouraged me.
I would also like to thank Sue Shapland, Louise Hatter and
Lisa Papas from The Multiple Sclerosis Society of Western
Australia (Inc). Thank you for assisting me with participant
recruitment. Without your support I would not have been able
to undertake this study. Your support for people with MS is
inspirational.
This study was undertaken as a requirement for the course
of Bachelor of Arts (Psychology) Honours at the Faculty of
Health, Engineering and Science of Edith Cowan University.
MSWA Nurse Marisa Pinerio retires
It is with mixed emotions that I announce that our young at
heart Marisa Pinerio retired in November and is now free to
amble down the path of being a grandmother and retiree!
Marisa has been an amazing part of the MSWA Nursing
Team for 10 years. She brought so much laughter and fun
to us all, not only in the nursing team, but in our MS Family.
Her wealth of knowledge, compassion and understanding
benefited so many people affected by MS and those working
in the area of MS in Australia. Her passion for supporting
and mentoring her peers, and being there for all, will be
missed. We hope that she will now put that abundance of
energy into enjoying the next stage of her life.
Please join me in wishing her all the best.
Sue Shapland
The MS Society of Western Australia Summer 2015 21

What do you say when you’re
‘Back in the Game’?
Rosalind Joffe
It happens easily and too often. You try to explain that
you can’t do something (that you could do until now) and
the blank stares, questions or snide comments leave you
feeling isolated, frustrated or even guilty. You know they’re
wondering, “But you look the same. What’s changed?”
Or maybe you’ve already said you’re not as ‘able’ to get
something done or even to show up but some people still
expect you will. Don’t you look the same? So reluctantly, or
maybe angrily, you remind them what you’ve already told
them. I have been diagnosed with multiple sclerosis.
And, then, if you’re lucky enough, the symptoms are no longer
an issue and you’re back to whatever baseline you live in and
can return to what you could do. But now you’re stumped.
How do you explain, “I’m back in the game?” But you look the
same. It’s complicated. Enough to make you want to ignore
you feel better and keep going as you were.
Let’s face it. Nothing about this life makes sense to you.
No surprise that others don’t get it, either. As one client
complained, “Things are great. I feel like myself again, even
if that’s not the big guy I was before I got sick, it’s better than
what I’ve been lately. But how do I tell my boss that he can
trust me to get things done again when I’ve been missing in
action for a month? Or tell my wife that I can take the kids to
their soccer matches this weekend when I’ve been sleeping
whenever I haven’t been working?”
If only there could be a simple explanation for why you can
do something today that wasn’t possible yesterday? Oddly
enough, the most confusing moments are often when you
say, “Hey, I can do this now!” If you can offer a clear medical
reason, it’s easier for others to understand. But with chronic
stuff, that’s rarely the case.
So what can you do other than pretend you’re still living with
those debilitating symptoms? A great place to start is within
you. When you find a way to accept that you live with these
changes, you’ll be more likely to reduce the drama with others
and that helps you to be more effective.
But that kind of acceptance can be difficult. And it, too,
can wax and wane as life throws you the curve balls. But
when you focus on the concrete, what you say to others, you
can feel a sense of pride that this is a place where you can
take charge.
So that’s why I’m sharing four things to consider when you want
others to know you’re ready and able to get ‘back in the game’:
• Acknowledge you’ve been disappointed that you’ve been
unable to meet your commitments and, if relevant, express
gratitude for their help by picking up the slack.
• Focus on what you can do now rather than an exhaustive
explanation of the nature of the disease.
• Make it clear that because the symptoms change
unpredictably it’s impossible to know if and when it might
change again but if it does, you’ll keep them in the loop as
best you can.
• Keep the drama to yourself and stick with the good news
even if you don’t feel it.
No, this isn’t easy and it’s often frustrating, demoralising and
reduces even the most positive to tears. But I’ve found that
the better you get at communicating clear information that
keeps others informed when and where they need to know,
the better you’ll feel about the things you can’t change.
About Rosalind:
I have lived with unpredictable and debilitating symptoms for
over 35 years. In founding ciCoach more than 15 years ago, I
built on my own experience facing the on-going challenges of
working while living with chronic illnesses (including multiple
sclerosis and ulcerative colitis).
Difficult health led me to make ‘switchback career turns’ so I
could continue to work to the best of my abilities. I struggled
to redefine myself and reinvent what I could do. It was lonely
and difficult and the journey would have been a lot easier if I
had help.
My work is dedicated to sharing what I’ve learned along the
way. I am passionate about giving others the support and
guidance they need to create the success that they desire so
they can thrive, not just survive in their lives.
You can find more articles at cicoach.com/blog/
22
Summer 2015 The MS Society of Western Australia

The Sailing Sclerosis Project:
Oceans of Hope
Leonie Wellington
Oceans of Hope is a project designed to educate, promote
and change the perception of MS worldwide by inviting people
living with MS to jump aboard on a leg of a round the world
sailing trip. I was fortunate enough to sit down with one of our
Members, Brenden Edwards, who made the cut and completed
the leg from Cairns to Darwin via the Torres Strait Islands.
How did you find out about Oceans of Hope?
I saw it on my wife Sharon’s Facebook and put in an application
the next day. That was in February this year. The founder said
that one in four applicants made it through. There were only
12 crews of six over the whole world journey. They have a
big matrix of how they pick out the crew based on all the
applicants’ information. It was a bit like winning the Lotto!
What did you expect to get from of the experience?
I don’t know, I was just open-minded. It was more of an
adventure and a good excuse to get out of the winter down
here and into the sun. It was quite good. I learned a lot
because there were a couple of other Aussie blokes on the
boat and I learned a few things about what is available in
Australia I didn’t know about. It was good from that aspect to
network a bit. It ended up being a good all-round experience.
What route did your trip take?
We left from Cairns in Queensland and finished in Darwin in the
Northern Territory. We passed Cape Tribulation, around the top of
Cape York and stopped at Thursday Island for a couple of days.
How many people were on the boat?
From Cairns to Thursday Island there were two skippers, a
father and son, from Denmark and there were six MS crew. We
had three Aussies, an American, a Belgian and a Dane. Then in
Thursday Island we picked up a third skipper Mikkel who is also
the founder of Oceans of Hope and a doctor. When you do an open
water crossing like we did across the Gulf of Carpentaria they
always like to have a doctor on board. I still keep in touch with
a couple of the guys. We were lucky to be given the opportunity
and you can make friends for life from these experiences.
What was the highlight of the trip for you?
The trip was a bit over two weeks. It was just the all-round
experience. It was so nice being out on the water and the weather
was warm. You couldn’t say that we had a bad time compared to
previous crews. One of the guys on our crew had come across
from Auckland to Sydney and he said there were massive swells
and it was freezing cold whereas we were in board shorts and
t-shirts. We had our watches and duties to do but it wasn’t
like they were really busting your chops. Once all the sails and
everything were set up they didn’t very often change them unless
the wind changed. It was a good experience basically.
What was the biggest challenge?
It wasn’t so much a challenge for me, probably for some of
the other people, as I don’t sleep a lot. You had to do your duty
or watch at one in the morning, four in the morning or six in
the morning. Two would go on watch for three hours every six
hours unless someone was seasick and unable to do it. Some
people who like their sleep were a bit sleep deprived. I used
to stay up even when I wasn’t on watch anyway because it
was nice being up on the back of the boat in the fresh air.
Down in the cabin there is diesel fumes and noise so it was
better to be up and out in the fresh air. What time your watch
fell determined what your duties would be. Getting breakfast,
lunch or dinner ready was very claustrophobic, hot and stuffy
downstairs in the galley. The cabins were for two people and
were small and basic so space was at a premium.
What was the main objective of Oceans of Hope?
To raise awareness about MS and to show that people with
MS are just as capable as anyone else. They certainly got
plenty of coverage everywhere they went. They did taster
sails in the ports they stopped in for people with a higher level
of disability. Mikkel the founder was inspired by a patient who
was diagnosed with MS and was about to retire and lamented
that he wouldn’t be able to follow his plans to go sailing
because of the diagnosis. Mikkel found a sponsor in Biogen
that helped them purchase the boat and cover running costs.
All we had to pay for was our food and the cost of getting to
and from the ports our leg started and finished from.
Is there any lasting thing you have taken from the trip
back into your everyday life?
You can do things when you set your mind to them. There
were times when things were quite hard on the boat. You
were up at all odd hours, it was quite hot and living in such a
confined space with so many people you need to be flexible.
You had to be willing to live with people’s different habits.
You have to be accepting and willing to compromise. Part
of the journey is to put yourself out there and promote the
experience and share the word. Public speaking is not really
my thing but I have talked to the outreach group and at my
daughter’s school. People have been good about it. They ask
lots of questions and want to know. My daughter’s class is
year two/three students and they don’t know what MS is so
at least they know a little bit about it now. It is one of the best
things I have done in my life.
If you would like to read more about Oceans of Hope visit
the website: sailing-sclerosis.org
The MS Society of Western Australia Summer 2015 23

Help us stand up to MS in 2016!
The Multiple Sclerosis Society of WA (MSWA) holds many events throughout the year. Help us stand up to MS by
joining us at one of our many events - you can volunteer or take part!
20 February 6 February 27 February
20 March
ARMADALE
ALBANY
BUNBURY
7 May 22 May 25 May 17-19 June
Date
Saturday, 20 February
Perth
Saturday, 6 February
Perth
Saturday, 27 February
Albany
Sunday, 20 March
Bunbury
Wednesday, 25 May
Perth
Event
Stadium Stair Race The Stadium Stair Race is an exciting event at Domain Stadium now in
its second year. The unique course will take you up, down and through the iconic venue, back
of house and exclusive areas of the venue, finishing on the hallowed turf under the stadium
lights! This event is unique to WA and the only one of its kind here in Perth. Participants will be
supporting Western Australians living with MS.
Swim for MS - Armadale A four-hour relay challenge. All funds raised enable MSWA to continue
to provide support and services to people living with MS in Western Australia.
Swim for MS - Albany A ten-hour relay challenge. All funds raised enable MSWA to continue
to provide support and services to people living with MS in the Great Southern Region.
Swim for MS - Bunbury A ten-hour relay challenge. All funds raised enable MSWA to continue
to provide support and services to people living with MS in the South West.
World MS Day is our largest street appeal of the year. Join us in the Perth CBD and help raise
funds to provide support and care to those living with MS.
(08) 6454 3131 events@mswa.org.au mswa.org.au
24
Summer 2015 The MS Society of Western Australia

The law of intention
Dr Andrew Ong
“How can the cosmic religious experience of men like
Democritus, Francis of Assisi, and Spinoza (atheists and saints),
be communicated if it cannot lead to a definite conception of
God or to a theology? It seems to me that the most important
function of art and of science is to arouse and keep alive this
feeling in those who are receptive.” Albert Einstein
Inherent in every intention is the desire to have it, along with
the mechanics to make the object work and the universal
promise for its fulfilment. Intention and desire, along with our
infinite potential, provides us with the unlimited organising
power that produces order in our lives.
When we sow the seeds of intention in the field of infinite
potential we trigger the immeasurable organising catalyst
of these universal forces to work for us and to then realise
our goal. In nature, as there is in the universe, information,
intelligence and energy is everywhere, and it is in this quantum
field of possibilities that lies the magic of pure consciousness
and supreme intelligence.
For instance within every flower, every blade of grass, a butterfly
or a bee – and indeed you and me – lies a part of that supreme
intelligence, with all of this infinite energy and massive amounts
of information. In fact the only difference between each creation
is the required energy and the amount of information.
In each case the basic components may be exactly similar in
that they all contain molecules and atoms, minerals, proteins
and vitamins. Life as we know it then is woven from this clump
of raw material, and therein lies the essential difference.
This is the information and the amount of intelligence required
to make it possible, but it is no less wonderful; be it a baby or
a puppy, everything is subjective.
We experience this field of possibility subjectively as our
own distinct thoughts, our inner feelings and emotions, our
memories that please and sometimes haunt us, what drives
us and the beliefs that contribute to our worldview. Ancient
sages have long understood this complex connection between
our lives and all of creation (the so-called six degrees of
separation between each of us).
For instance a single cell in the human body is capable of
performing six trillion activities per second. The human body,
likewise, can play a guitar while listening to the beat of the
drum, the singer, while digesting food, handle waste, ingest,
digest, metabolise, secrete enzymes, and react to hormones,
kill germs and even make another life (when pregnant), all at
the same time!
And so it is that a single-minded focussed intention which
is unbending in its fixity of purpose cannot be stopped.
Its power is infinite and almighty. What you do with all of
this unshakeable serenity and intense passion will catapult
you into the realms of the immortals, the role models and
achievers we most admire. There is no limit to your intention;
there is no cap placed on your potential, there is only the
promise of fulfilment if you believe in yourself.
MS Mega Home Lottery
The stunning Webb & Brown-Neaves Show Home in City
Beach worth $1.6 million or $1.35 million cash? That was the
enviable decision April Rose May had to make as the lucky
Grand Prize Winner of the recent MS Mega Home Lottery. Her
big win was the icing on the cake as it came just two days after
finding out that she was expecting her first child. Although
April thought the Grand Prize Show Home was beautiful,
she chose the $1.35 million cash prize to secure a future for
her growing family. The lottery sold out in just 13 days and
over 4,000 people shared in the $3.7 million prize pool which
included cash, luxury cars, overseas holidays, electronic
prizes and much more. For the first time ever, there were not
one but four lucky winners of the $50,000 Cash Bonus Prize.
Thank you to everyone
who supported this
major fundraiser by
purchasing a ticket in
this MS Mega Home
Lottery. All proceeds
go towards funding research
into the cause and cure for MS, and providing vital care
and support services to people living with MS. You won’t
want to miss out on the next Mega Home Lottery; the Grand
Prize Winner will be our first ever instant multi-millionaire!
Pre-register your interest at mslottery.com.au and join us on
Facebook at MS Mega Home Lottery.
The MS Society of Western Australia Summer 2015 25

Ocean Ride for MS 2015
The sun was shining brightly as 1,512 riders came together for
the sixth annual Ocean Ride for MS event held on 18 October.
Following the beautiful coastline from Fremantle to Hillarys,
riders chose between the 10km, 30km, 50km or 70km
courses. This year saw the addition of a new category – the
Enervit 90km challenge – tackled only by the bravest of the
brave. Whichever the category, participants all came together
and raised an incredible $187,946 for MSWA. The top three
fundraising teams were ‘For Pete’s Sake’ with $20,670 raised,
followed by ‘No MSing Around’ on $16,509 and ‘Team Troppo’
on $14,004. Teams No MSing Around and Team Troppo were
top fundraisers last year as well and it was great to see them
bring their ‘A-game’ again this year. There were also some
new faces in the crowd, one of them being 19 year old Eamon
Guilfoile. It was Eamon’s first time participating in the bike
event and not only did he raise $620, he also came well
prepared with a specially designed tandem bicycle. Eamon
has cerebral palsy and participated with his amazing support
group who took turns cycling him to the finish line. Team leader
of his support group Moira Wright said, “Eamon really likes to
be involved in the community and in anything active. He has
been surfing, abseiling and sailing. Biking is his new sport; he
goes out on his bike a couple of times a week.”
Eamon (centre) with his support group.
“He really has a fabulous team who support him and enjoy
taking part in activities with him.” There was more fun to be
had at the finish line at the City of Joondalup Event Village
at Whitfords Nodes, Hillarys where participants were greeted
with a carnival atmosphere. The Talia Hart Duo provided
the tunes as riders enjoyed much needed massages and
munched on goodies from an array of food vendors, while the
kids enjoyed a bouncy castle, face paintings, an animal farm
and much more. Thanks go to our Events Team, our many
volunteers and event sponsors for making the Ocean Ride for
MS event great fun for a great cause.
Members Ride Off
Our Members took part in their own version of the bike ride
this year when they competed in the Stationary Bike Ride
Challenge! 54 Members from Wangara, Beechboro, Wilson,
Southside and Albany participated and raised over $6,500 for
people living with MS in Western Australia. The challenge took
place during regular physiotherapy sessions and saw Members
competing in teams to cycle the furthest distance. Team
‘Southside Dragons’, from the Rockingham Outreach Centre,
were the standouts this year raising $4,462. Team Member
Sharon Lamont was diagnosed with relapsing remitting MS
last year and had participated in Ocean Ride for MS 2014 with
her family. While she wasn’t able to participate in the main
event this year, she wanted to stay involved in some way and
decided to sign up for the Stationary Bike Ride Challenge. She
said, “I try and do one thing every year. The social aspect of
participating is fun and I’m also a bit competitive so it’s good to
get involved. It’s also good to meet other people with MS and
to find out what their stories are.” Congratulations and well
done to all Members who participated!
26
Summer 2015 The MS Society of Western Australia

Santa’s Gift
Ros Harman
When my daughter was a toddler, I lied to her. I told her Santa
Claus was real. I voluntarily participated in the annual global
December deception. When she was two years old it was an
easy deception, reinforced on TV, in shops, and everywhere
she looked for weeks leading up to the big day. She happily
believed that Santa snuck into our house on Christmas Eve
and left presents under the tree.
But my daughter is smart. By the time she was four she had
figured out how the world worked and she knew how to make
the most of it. That was the year she dictated a letter to Santa
that read:
“Dear Santa, I want a pink dolly for Christmas not a yellow
one. If you’re a good boy you can give it to me. Amen.”
I’ve kept that letter. I love the fact that at such a young age she
already knew what she wanted and wasn’t afraid to ask for it.
I love her assertiveness – she wasn’t going to let anyone call
the shots, least of all an ageing, overweight, hairy old man
inappropriately dressed for summer in a silly red pantsuit. I
love her judicious nod to the possibility of a higher authority
at the end.
Twenty years on, my daughter’s attitude hasn’t changed
but she directs her requests to me now instead of Santa.
She usually asks me for something she needs but expects
a surprise gift too. A Santa gift, we call it. The Santa gift
should be something luxurious, indulgent, highly desired and
preferably expensive. Clothes, shoes, perfume or jewellery
are all acceptable.
My daughter is studying medicine in Queensland now and
living on the meagre government student allowance, so her
Christmas present requests are usually pragmatic. This year
I have been asked for money for a second-hand fridge. I’m
happy to help her out. I see it as an investment.
She came home for Christmas and while I don’t begrudge
paying for her airline ticket because I love to see her, I did have
to take a big breath when I saw the price. I was still holding
my breath two weeks later when she rang to announce she
had changed the flight to an earlier one, isn’t that exciting?
And by the way, would I mind paying the extra $140 it cost?
I’m still hyperventilating.
This time she is bringing her boyfriend with her which means
a gift for him too. He has the same name as a member of the
Royal family, but that’s only a coincidence and I won’t let it
prejudice me. I’ve checked him out on Facebook of course, and
I know he likes cars, which is a good thing because my smart,
tough, assertive little girl needs help in that department. Until
recently she thought the temperature gauge was an indicator
of the weather. It gives me great peace of mind to know that
she has someone making sure there is water in the radiator,
and checking her tyres regularly. Unfortunately I can’t afford
to buy him a car.
It won’t be too long before my daughter graduates and starts
working and earning a good salary. Maybe one day she will
ask me what I want for Christmas and I’ll ask her for money
for a fridge.
Perhaps she will buy me a Santa gift as well. Books, chocolate
and alcohol are all acceptable. Amen.
The MS Society of Western Australia Summer 2015 27

That’s life
with Narelle
Narelle Taylor
It felt like I imagine winning Lotto would feel like. My daughter,
Bree, suggested we go away for a few days. I thought she had
Treendale Gardens in mind. I love it at Treendale. But instead
she got a great price on the internet for us to go to Bali. It
sounded wonderful, but I’d heard that Bali was not wheel-chair
friendly. I decided I’d be happy to stay in the resort if I couldn’t
use the streets. We agreed to go.
Neither of us confided to the other what we looked forward
to most in our few days holiday in Bali. I was sure that Bree
would enjoy the time off from ‘mothering’ duties but worried
that she might find caring for me an even bigger chore.
I looked forward very much to the change in environment;
to being able to make conversation about different things to
what usually filled in my day here in the aged care facility.
Most people here live in a very small world and so many
residents have such similar interests that conversation is
quite repetitive. Most forget what they have spoken about
within hours anyway.
I loved talking all day with my daughter. She treated me like
family. The Balinese people were so obliging and agreeable
with all that we needed them to do. They would dash out of
their shops and move the motorbikes off the footpath so we
could pass effortlessly.
We went, one day, to have a manicure and the young Balinese
girl pulled her stool up in front of my wheelchair. She placed my
hands, outstretched on the cushion on my knees. In her best
English, with her palms together, she implored “Stop shaking”.
I knew that I’d never be able to explain multiple sclerosis and
its tremor to her so I just smiled inanely and hoped she’d
manage. She did.
Bree and I managed extremely well in our ground floor resort
unit that had a wheelchair accessible bathroom. A simple
phone call to reception was all that was needed to have them
bring a shower chair immediately. We managed faultlessly
and were never too late for breakfast. I’ve got an extra three
kilos of bodyweight to prove it.
The staff at the resort used trolleys to move linen, food and
cleaning gear around so there were ramps everywhere. My
wheelchair and I needed ramps and Bree is sufficiently strong
enough to do the pushing required. The staff would kindly
push me, or carry bags, if they were impeding my daughter’s
pushing. Moving around within the resort seemed, and was,
so easy. Well, for me, it was easy. Bree didn’t complain though.
We went on scenic walks along the paved road on the
beachfront and would choose our restaurant for dinner and
for viewing the sunset. I remembered the tropical sunsets
we’d absorbed when we’d lived on board thirty years ago. I
really enjoyed watching the golden sun, on the horizon, drop
down behind the silver sea whilst I sipped my gin and tonic
in the balmy night air. To anticipate the thunderous glory of a
red sunrise was a feeling, so memorable and so reassuring.
Afternoons in the pool, at the pool bar, were great fun since I
hadn’t been swimming for about ten years and being gripped
by thirst didn’t mean that I’d walk funny because I didn’t even
need to attempt to walk. My orange inflatable pool ring may
well have been a tad déclassé but was just so comfortable for
me to ‘bob’ about in and Bree was able to tow me to and from
the underwater bar stool. We’d carefully planned our entry
and exit from the pool and, no doubt, would have managed by
ourselves but resort staff always appeared from nowhere and
provided excellent assistance.
We didn’t go on tours or treks since neither appealed.
Bree had done tours on previous visits and trekking in hot
sun is something I’d never do. We actually filled in our day
comfortably by swimming or shopping and getting dressed
for dinner.
We’d go ‘down-town’ for a little while of an evening and met
some very interesting holiday-makers before we ambled back
to our room. They found Bree and I to be quite a novelty, and
we were. They seemed to think we were brave to attempt
Bali in our condition and we probably were, but people with
multiple sclerosis should be assured that it was as easy as
anything else and that we shouldn’t let the disease stop us
from travelling.
28
Summer 2015 The MS Society of Western Australia

Volunteering with Dawn
Dawn Burke, Volunteer Coordinator
Hello everyone. What happened? Did we blink a second too
long? I don’t know about you, but when I opened my eyes
again to take in all the wonders around us, I suddenly realised
it’s the end of the year again.
Oh no! Christmas is upon us, which also means we will be
embracing a New Year. Out with 2015 and in with 2016. Time
stops for no one, and this is the reason it is important to take a
moment to stop and smell the roses at every chance you get.
Since the last Bulletin I have attended two more Members’
camps, with a couple of volunteers in tow. Woodman’s Point
camp was held in September and it was a little bit chillier
than normal. Lucky for us, one of the volunteers brought
along extra rugs and scarves, which made the cold a little
more bearable.
The South West camp was held in November, again in
Denmark. The setting is absolutely beautiful and a great time
was had by all. The weather was also quite cool which allowed
us to take advantage of having a fire in the old submarine
mine. We even got to toast marshmallows in it. Yum!
International Volunteers Day was celebrated this year on
Friday, 4 December. It’s important to acknowledge and
recognise every single person all over the world who gives up
their valuable time to volunteer and this day allows all of us
to do this. I would like to take this opportunity to personally
thank each and every one of you, our MS Society of WA
Volunteers, for doing what you do and doing it so well. A few
of our volunteers attended a Garden Party at Government
House; I will tell you all about it in the next Bulletin.
The following day I attended a sumptuous morning tea to
celebrate National Volunteers Managers Day. It was a very
informative, fun and extremely enjoyable event. Volunteering
WA spoilt all of us and I must say I was extremely appreciative
of being included in this special morning. So I wish to thank
you all for making my job so pleasurable. I love getting out
and about and catching up with all of you whenever I can.
Again I have welcomed a few new volunteers over the months
and sadly a few have had to leave for various reasons. It doesn’t
matter how long you stay with us, every bit of time given is
valued and helps our Members and staff along the way.
Thank you to all the volunteers who responded to the feedback
forms. It is great to know you are happy and enjoying your
time with us. Please feel free to pass on any suggestions you
may have, as feedback is important and I value your opinions.
By the time this Bulletin hits your mail boxes, we would have
already enjoyed the Members, Volunteers and Staff Christmas
party. If you were lucky enough to join us for the party you will
already know what shenanigans went on, and if you weren’t
so lucky and didn’t make it, well you will have to rely on the
next Bulletin for happy snaps.
So much is happening over the next few months and I hope
you all keep safe and well throughout the silly season.
I wish you all a Happy Christmas and I look forward to
seeing you all in the New Year. Take care, Dawn.
The MS Society of Western Australia Summer 2015 29

Wilson Outreach News
Trip to the zoo Giselle Martin, Activity Coordinator
This year at the Wilson Outreach Centre we have been
experiencing a virtual ‘Trip around the World’. We have all had
a great time engaging in games, activities, crafts and exotic
cuisines as we ‘visited’ China, India, Alaska and our last stop
this month, Africa.
During November, as well as enjoying lunch for the race that
stops the nation – Melbourne Cup, we had fun quizzes to get
our brains ticking, animal bowling which got our competitive
spirit going and ‘Pin the Tail on the Lemur’ to bring out our
inner child! Additionally, some strikingly beautiful savannah
canvas paintings were made and displayed in Outreach. And,
we enjoyed a special screening of ‘The Gods Must Be Crazy’
on the big screen, which gave us all plenty of laughs!
On 24 November we had a very fun outing to Perth Zoo, with
a special trip through the African Savannah section. Our own
Jenny Sim had her very first ever trip to the zoo and loved it!
She said, “I was thrilled to be asked on the zoo outing for
our African theme. Out of all the animals I saw, I found the
elephants the most fascinating.
“One was having a pedicure while we watched and I couldn’t
believe how still it stood! The whole experience was mind
blowing and I really enjoyed the talk on the Orangutans,
discovering the oldest ever recorded one is 63 years old and
still alive and the mother/grandmother/great grandmother to
most of the orangutans there!”
She added: “We had a lovely picnic lunch watching the lemurs
play, with the best part the crème caramel and peaches for
sweets! This certainly won’t be my last outing to Perth Zoo
and I would like to heartily thank the wonderful MSWA staff
for taking us out to experience this amazing place.”
Back at Wilson, our Members decorated colourful African
drums which were used during the special African drummers’
performance from the group ‘Akwaaba’. They came and
performed and boy did they wow us with their vibrant and
interactive percussion display! We had been looking forward
to this performance all year and they didn’t disappoint!
Members and staff joined in the rhythm-making with drums,
xylophones and maracas. We sure made a lot of noise and
probably drove the offices mad, but such wonderful memory
making moments are worth it!
The last few weeks we were all kept busy preparing for our
annual Members’ and Volunteers’ Christmas Party. Always
a wonderful highlight of the year and one everyone looks
forward to. During December our halls were decked with holly
and the Christmas spirit flowed before the big clean up and
pack up for the big break.
We are so proud of the wonderful year of great events
and opportunities we have had for Members, our special
friends, who visit here each week. I know that our
Resource team is feeling inspired and ready to deliver
another great year in 2016! See you all then.
Community concert Nicola Ryan, Resource Coordinator
I attended the Community Fundraising Concert for MSWA
which was held on Sunday, 9 August at the Don Russell
Performing Arts Centre in Thornlie.
This event was the dream of Joan Crossman who now knows
dreams can become reality. Joan is a very special lady with
a huge heart, especially when it comes to MSWA. Joan has
two friends who are very dear to her living with MS, one being
Jenny Sim, a Member who attends Wilson Outreach.
Joan worked tirelessly to make this event a great success.
She arranged for local businesses to sponsor the event which
included LinC Canning Inc, Riverside Gardens Estate, Uniting
Church Cannington, Solomon’s Flooring Balcatta, Duo 41 and
Curves Gosnells.
Along with MSWA staff, volunteers and Members also
contributed to the concert by selling tickets, contributing
artworks for the silent auction, arranging prizes for the raffles
and selling goods on stalls.
The concert would not have happened of course without
so many wonderfully talented performers who willingly and
voluntarily contributed their time to perform on the stage
that afternoon. These acts included choirs from Victoria
Park Apostolic Society and the Riverside Gardens Men’s
Choir. Other acts were the ever-popular Duo 41, Sian and the
Rivergums Ukes.
Two acts that specifically focused on MS were Bill de Graaf
singing a song written about MS and our very own Jenny
reciting a poem entitled “My new Set of Wheels” by Darleen
Uggen. With solo singer John Keinman and Jytee Larsen
playing the Austrian Alpine Bells, the calibre of talent was
exceptional!
The concert was a memorable event with a capacity crowd.
They raised an awesome $4,850. Joan presented the cheque
to the Wilson Outreach Centre and we will use the funds to
buy new height adjustable tables for the group.
Joan said, “Knowing this will make a difference to those living
with MS and in particular my best friend Jenny has definitely
made all the hard work worth it.
“Here’s to next year’s event being even bigger and better; and
an extra special thank you from me!”
30
Summer 2015 The MS Society of Western Australia

Bunbury and South West
regional round up
Treendale Gardens, Bunbury Update
Paula Kennedy, Treendale Respite Coordinator
Treendale Gardens celebrated the race that stops the nation,
the Melbourne Cup, with a lovely luncheon for our residents,
respite clients and staff. All of the residents were involved in
designing and making their race day hats with support from
Susie R and her helpers. We would like to thank two local
businesses – Little Gems Australind and Spotlight Bunbury
– who gave us generous discounts and donations. The hats
were quite spectacular and our respite clients also joined in
the fun by wearing the hats they had brought with them.
Suzy B organised some Melbourne Cup sweeps and the
prize-winners were pretty spread out though some were
luckier than others!
Our cook, Belinda, prepared a fabulous lunch that was
thoroughly enjoyed by all in attendance. There was even
some left over for the afternoon staff to taste!
As you can see from the photo, a great time was had by all
and people are already talking about next year’s celebration.
Painting to regain my self-worth
Louise Schutz
My name is Louise Schutz and I live in the South West.
I was diagnosed 18 September 1998. Feels like it was just
the other day!
In 2004 while on holiday in Mandurah I had a relapse. I just
thought that the change of environment was why I was unable
to do simple things like clean my teeth or feed myself! But
I have been unable since then. Fortunately, I have a very
supportive husband.
I use a key guard on my keyboard so I can use my computer,
as I have what they call an ‘intentional tremor’ but I so don’t
do it deliberately! While I am still weight bearing, my walking
is with the help of aids – walls, furniture, walking frame and
even the floor!
Michelle Payne rides Prince of Penzance
to victory in Australia’s biggest race
This is just one of the special events that have occurred at
Treendale this year. Recently clients have had a bingo morning,
those who enjoy it have been out shopping and there have
even been visits to local dams and the Bunbury Wildlife Park!
We are also in the process of refurbishing our residential
communal area to lighten and brighten it up. It’s amazing
what a difference paint colours can make!
We are also excited, and very grateful to Bunnings Treendale
and their staff, who are working on revamping our communal
courtyards. Changes will make them more accessible for all
our residents, which will be fabulous. We will display these in
the next Bulletin.
We regularly have vacancies in respite house and the
adjoining three bedroom family holiday unit so if you are
thinking of taking a sojourn to the country, please give
Linda or Paula a call on 9725 9209.
Recently with some help from my care support workers I have
got into painting! Abstract is my specialty. I really enjoy doing
this; the feeling of self-worth when people actually pay me
to do a piece for them is so inspirational and it leaves me
feeling worthy.
The first three paintings I did for our bedroom, the ‘sunset’
I did for a lady who paid me $120 and the last one which
is quite large was commissioned by the Disability Services
Commission and they paid me $495!
Some people were lucky enough to be there and actually
witness history being made — a Melbourne Cup that will live
forever in the memory of Australian folklore. The rest of us must
be content to live vicariously. But what a race it turned out to be!
The winning horse was ridden by Michelle Payne, the first
winning woman jockey in 155 years of racing. Her brother Stevie,
the strapper, was an appealing young man with Down Syndrome
who stepped up and had drawn the inside barrier for her and the
‘Prince’. And the horse was a 100/1 long-shot on the tote.
Then came the remarkable post-race
interview when Michelle Payne told
those who doubted her ability to “get
stuffed.” How Aussie is that? It has
to up there with the last words of Ned Kelly – “Such is life.”
Member Athena Doropoulos, ably assisted by her carers Lisa
and Jaci, was fortunate enough to attend the Melbourne Cup
and witness this extraordinary event.
The MS Society of Western Australia Summer 2015 31

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