Bulletin Winter 2015

ulletin
The Official Magazine of the MS Society of WA | mswa.org.au
Winter 2015
Lifting the curtain on counselling
Trial Sites Update
Living a meaningful life with MS
World MS Day

Inside | Winter 2015
Letter from the Editor
Dr Greg Brotherson
The Multiple Sclerosis
Society of WA (Inc.)
WILSON CENTRE
29 Parkhill Way (08) 9365 4888
Fax (08) 9451 4453
Freecall 1800 287 367
See Health Team Dept Contacts on this page
Member Services
Directory
GENERAL MANAGER, MEMBER SERVICES
Sue Shapland 9365 4840
INDIVIDUAL OPTIONS
Manager Community Care Programs,
Gail Palmer: 9365 4851
OUTREACH GROUPS
Wilson Outreach (Mon-Thurs): 9365 4830
Beechboro Lodge (Mon, Fri): 9377 7800
Southside Outreach (Fri): 9592 9202
Bunbury Outreach (Wed) 9791 2472
Albany Outreach (Fri): 9841 6657
BUNBURY OFFICE
9 Ramsay Street 9791 2472
BUSSELTON OFFICE
1/21 Cammilleri Street 9754 2320
MARGARET DOODY RESPITE HOUSE
Manager, Chris Rush: 9385 9574
FERN RIVER ACCOMMODATION
Manager, Liz Stewart: 9356 2747
HAMILTON HILL ACCOMMODATION
Manager, Jayne O’Sullivan: 9331 5780
TREENDALE GARDENS RESPITE &
ACCOMMODATION
Manager, Linda Kidd: 9725 9209
Contact Us
If you would like to comment
on anything you read in this
Bulletin please email
bulletin@mswa.org.au
or write to
MSWA, Locked Bag 2,
Bentley DC WA 6983
The Bulletin can also be viewed at
mswa.org.au/bulletin
Editorial Committee
Greg Brotherson (Editor), Marcus Stafford (CEO),
David Bugden, Sue Shapland, Ros Harman,
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
Highlights of the 2014 Member Services
Annual Survey Results 6-7
Lifting the curtain on counselling 8
Hand Therapy Program 9
Clarkson Physiotherapy
Exercise Program 2015 9
Round-up of research and
other items of interest 10-11
Occupational therapy
specialising in function 12
WA MS research opportunities 13
Trial Sites Update - April 2015 14
From the Social Welfare Officer 15
NDS Taxi trial 15
The invisibility of loss 16
Counsellor in the South West 16
Living a meaningful life
with multiple sclerosis 17
Perth Zoo recognised as WA
Companion Card affiliate of the year 17
That’s life with Narelle 18
Protect yourself from the flu 19
Disclosure – to tell or not to tell? 20
Friends 21
Albany Outreach News 22
Albany Swim for MS 22
Bunbury Swim for MS 23
Camp dates 2015 23
Anzac Day service 24-25
Sportsperson of the Year 26
World MS Day 26
Mega Home Lottery 27
Rotary Team Challenge 27
Riding into the night 27
NURSING Our nursing team is usually the first point of contact, after the neurologist,
for anyone diagnosed with multiple sclerosis. We’re committed to providing holistic support
so you have a greater understanding of what to expect from your condition.
Manager: Lou Hatter on 9365 4809
Hospital Liaison Nurse (S.C.G.H.): 9346 3333
Community Nurses: 9365 4812, 9365 4838, 9365 4870, 9387 4846 or 9365 4888
PHYSIOTHERAPY Physiotherapy aims to provide treatment interventions to develop and
maintain mobility and function. Our physiotherapists are experts in movement and function,
and work in partnership with Members to attain the highest possible level of independence.
Manager: Marilyn Sylvester on 9365 4837
Physiotherapy Office: 9365 4834
OCCUPATIONAL THERAPY Occupational therapists work with Members, and clients,
to enable them to continue their work and other interests for as long as possible, where they
may otherwise have been limited by their condition.
Manager: Sandra Wallace on 9365 4804
An occupational therapy contact can be reached on 9365 4888
COUNSELLING Some people need support to deal with the news that they have MS,
and the challenges that may present over time. Our qualified counsellors provide a safe
space for you to explore your concerns, in a safe and confidential environment.
Manager: Lisa Papas on 9365 4836
Support Counsellors: 9365 4808 or 9365 4811 Peer Support Program: 9365 4808
Welfare Officers & Funding Locators: 9365 4889 or 9365 4835
INDIVIDUAL OPTIONS We are able to supply limited in-home support such as
assistance with personal care for people with disability due to multiple sclerosis, to help
them remain in their homes. Care and supports are provided through a combination of
funding from the Disability Services Commission (DSC) and our own fundraising efforts.
We also manage DSC allocated individually funded care packages.
Contact us on 9365 4851 for more information.
CAMPS & RECREATION
MSWA provides separate recreation camps for Members, carers, and families, primarily
funded by Lotterywest, and for a nominal cost to participants. These camps provide a
break from daily routines, and strengthen friendships and support networks.
Coordinator for Camps & Recreation: 9365 4843
The diagnosis, incidence and
prevalence of multiple sclerosis.
For the purpose of planning and defining ourselves, the
Society must know how many people in Western Australia
have been diagnosed with multiple sclerosis (MS), and how
many are likely to be diagnosed in the near future. The tools
used for this are the prevalence rate, which is the number
of people diagnosed with MS per 100,000 people, and the
incidence rate, which is more difficult to calculate but refers
to the number of people newly diagnosed with MS over a
given period of time.
While it might seem easier to simply count people the task
is somewhat hampered by matters of confidentiality and
the willingness of some newly diagnosed to register with
the Society. Most epidemiologists have therefore chosen to
focus on the prevalence rate and, other than studies being
conducted in Australia, the data from the northern hemisphere
is the benchmark thus far.
For instance we now know that in the United States there are an
estimated 400,000 people living with multiple sclerosis. We also
know that according to the Atlas of MS (2013), the prevalence
of multiple sclerosis in Canada is 291 for every 100,000 people
- the highest in the world - 80% of whom are unemployed
(taken from the Canadian MS Society, Flee or Fight campaign,
12 May 2015). Epidemiologists also tell us that although more
people are being diagnosed with multiple sclerosis today than
in the past, there is no definitive evidence indicating the rate of
multiple sclerosis is generally on the increase.
With all this information freely available and now having the
capability to conduct research ourselves, the Society has
become increasingly reliant on statistical information when
planning and undertaking the business of providing the care
for people with MS. For example, until the latest statistics
become available, as things stand at present we know from the
Australian Bureau of Statistics (latest release 27 June 2012)
that some 66.7% of the membership will need assistance with
at least one of ten everyday activities. Around 46% of these
people will also need assistance with mobility tasks.
This year, 68 new Members have joined the Society and during
this same period, 10 of our Members regrettably passed away
(in simple terms, this is the net-incidence rate). The Australian
Bureau of Statistics also informs us that as of May 25,
Western Australia has a population of 2.589 million people.
With this information, it is possible to calculate the prevalence
rate in WA, which is 85 out of every 100,000 people. Other
research tells us that for Australia as a whole, the rate is at
95.2 per 100,000 people, our warmer climate contributing to
a distinctly different incidence rate to our Canadian cousins.
With the population of Western Australia growing at 2.1%
(Australia at 2%), the Society can expect to cater for an
additional 85 Members (3/4 of them women) each time the
population grows by 100,000 people. With this in mind,
the Society is budgeting to continue the growth in Member
Services by a further 9% and to increase our commitment
to research by a further $250,000, providing a total of $1.5
million for finding the cause and a cure for MS.
In this issue of your Bulletin you will also find the results and
commentary on the 2014 Member Services Annual Survey -
a significant statistical snapshot of the Society compiled by
our General Manager of Member Services, Sue Shapland.
Pleasingly, we received 789 responses, which is a 37% return
rate (collated February 2015).
Elsewhere in your Bulletin, Marcus Stafford, our CEO, explains
his decision to commit the Society to a particular model of
the NDIS (Marcus is never one to hold back when outcomes
are likely to disadvantage Western Australians living with MS
and other disabilities), and Sue Shapland discusses the need
for the Society to adapt to change and grow in the new
NDIS environment.
Adapting to change is also the theme for Leonie Wellington,
who lifts the curtain on counselling. Sandra Wallace, Manager
of Occupational Therapy, explains the range of specialised
therapies now on offer to Members. You will also find a round-up
of all the latest research, along with an offer to participate.
You will find that Members are now writing to us quite freely
about their experience at the time and after having been
diagnosed with MS. How did you handle the shock? Do you tell
your employer, or not? Your contributions are very welcome.
You will also find something positive from your favourite
contributors - the indomitable Narelle and Ros - who have
taken a hit and come up smiling, having internalised the effect
of MS on life and turned a negative into a positive. Nicola
Ryan captures the spirit of the Anzacs, and tells us about the
successful centenary ANZAC Day service held by the Wilson
Outreach Group.
Finally, on behalf of the Editorial Committee, I would like thank
everyone for your continued support of the Bulletin. Each of us
here at the treadmill are volunteers, including the staff when
we meet at lunchtime, and who then write their articles during
the evening. Such is the ingrained nature of the Society. Your
96% vote of approval makes everything worthwhile.
2 Winter 2015 The MS Society of Western Australia The MS Society of Western Australia Winter 2015 3

From the desk of the CEO
Marcus Stafford
It’s coming, and it’s coming to a town near you!
The National Disability Insurance Scheme (NDIS). We’ve all
heard of it and some are more intimately involved in the detail
than others. Indeed, if you are eligible for the scheme and
living in the Lower South-West or the Perth Hills, chances are
that it’s already a part of your life.
And if you are in the Cockburn/Kwinana area - rev up your
engines. It’s just around the corner.
For those who expressed cynical views that the NDIS is nothing
more than a passing fad or unaffordable dream, please think
again. It really is here and fortunately it’s not going to go away.
Let’s take a breath for a status update. There are two trial
sites in the State. The Lower South-West falls within the My
Way (NDIS) pocket and the Perth Hills under the national
system. Their principles are identical and first class. They
are both about choice and control for the person with the
disability and switching the power to where it belongs.
But their styles of delivery are very different. At a simplistic
level, the real decision-making for the My Way trial sits in
Perth, while the power base for the Perth Hills trial is in
Geelong and Canberra. Theory says that that shouldn’t make
much of a difference, but in practice it does.
The experiences of people with MS and other disabilities in
the My Way trial site seem to be appropriate and personal.
Feedback is pretty good, and words like ‘collaboration’ and
‘relationship’ are used.
Fair to say that feedback from the Perth Hills is patchy and the
model seems focused on national process, with less ability to
deploy flexibility and local knowledge. This was clearly endorsed
in the recent Parliamentary Joint Standing Committees held
in Busselton and Midland. That’s not saying that the people
working within the Perth Hills trial aren’t great people with
oodles of local knowledge. It’s saying that the bureaucratic
structures under which they are required to operate don’t seem
to be allowing them to fully use that knowledge.
If falling under a national structure is less than ideal, I would
have expected one of the positive balancing features to have
been the delivery of cost savings. Experience tells me that
centralised structures should deliver better cost savings than
distributed ones. Economies of scale and productivity benefits
come to mind. Yet, that’s not the case. The cost structures of
the Western Australian system are more efficient than those
of other States and of the national infrastructure. Bizarre and
oh-so-tempting to proffer ideas of why that might be!
So, it’s time. Time to commit to a Federated model of the NDIS
that is governed under a national framework with all the right
safeguards, but is led and managed from Western Australia.
Hang on, Stafford! Are you just some parochial, chardonnay-sipping
Eagles supporter who even likes to see the Dockers win, as long
as they’re not playing the Eagles? Isn’t there an independent
evaluation of the separate schemes happening? At 12 months
into the trial process, isn’t the race only half-run?
Firstly, in my view, the evaluation is a bit of a Clayton’s
evaluation, as both models are morphing before your very eyes.
Secondly, smart and experienced pragmatists can read
the play. As a commercial bloke of old, I’ve lost count of
the number of times my companies delayed decisions and
spent unnecessary consulting dollars to tell us things that we
already knew.
Thirdly, I believe there is too much at risk if we delay making
a commitment.
We’ll waste money needlessly.
We’ll defer the benefits of proper plans and services for
people with MS and other disabilities.
And if you look a couple of years out, you will see a political
landscape with both a State and Federal Government, together
with their respective oppositions, jockeying for position to get
themselves elected.
The NDIS is much too important to get dragged into that process.
The executive summary is: we’ll weaken our State and
disadvantage Western Australians living with MS and other
disabilities, if we don’t get a Federated model over the line.
I intend to do what I can to influence the right outcome.
Do you want to receive the Bulletin online?
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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
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SHOP
A message from the General Manager
– Member Services Sue Shapland
“Those who can adapt to change are
those who will continue to grow,”
Justin Ramalho
Never a truer word spoken, and very pertinent at this time!
Change is the one constant, and we are currently experiencing
ongoing change across the board.
In the MS world, there are three new therapies available
and additional international research efforts focusing on
progressive MS. In the health sector, we have the very
impressive Fiona Stanley Hospital open for business, and the
new Midland Hospital and Perth Children’s Hospital nearing
completion.
Of course, the biggest and most significant changes relate
to the NDIS trial sites, particularly here in WA where our own
state run version - the NDIS My Way trial - is being directly
compared to the National scheme.
Whatever the scheme ultimately looks like, and Marcus
has provided greater insight in his article, the outcomes for
people who do, or may need, a wide range of supports and/
or equipment, will be so much better. Already, we are seeing
some Members within both trial sites accessing their new
individual funding plans to their benefit. The Cockburn and
Kwinana NDIS My Way trial site commences July 1, which will
increase the coverage again.
We are also busy plotting our MSWA future expansion with
the Bunbury Centre plans awaiting Council approval, and a
Northern suburbs service centre in the early planning phase.
I would like to thank everyone who took the time to provide
us with their feedback through our annual Member Services
Survey for 2014. We had a record number of responses and
some great feedback and suggestions. I have summarised the
key findings in this Bulletin. Read more on pages 6 & 7.
Don’t forget flu season is on the way. Have you had your flu
jab? We have added some tips on trying to avoid the flu in
this edition.
Please remember the Member Services team is here
to provide you with quality information about all
aspects on MS, treatments, research and support and
services. Please don’t hesitate to call reception on
(08) 9365 4888 and Amelia will track down the relevant
staff to assist you.
MSWA Online Shop
Support Western Australians living with MS, and check out our
online store. All the merchandise is ‘Stand Up to MS’ branded
including t-shirts, caps, travel mugs and more. Also available
for sale are Entertainment Books and Bosko, the MSWA mascot.
All money raised will help people living with MS in three
major ways; funding research projects to better understand
the causes of MS, and ultimately find a cure, providing
professional healthcare services and delivering the best quality
accommodation for those who need 24/7 care.
4 Winter 2015 The MS Society of Western Australia The MS Society of Western Australia Winter 2015 5

Highlights of the 2014 Member
Services Annual Survey Results
Sue Shapland, General Manager Member Services
Thanks to everyone who responded to our Annual Survey
for 2014. We had a record number of responses this time,
which was fantastic! Your feedback is important to us, and
the comments are all reviewed and will help inform and guide
us in our planning.
Members who provided specific comments or requested
individual follow-up should have been contacted by our staff
by now.
Our anonymous survey was posted out, with a reply
paid envelope, and we received 789 responses or a 37%
return rate!
The two most important questions and responses we review
relate to customer service:
Are you always treated with care and respect by staff
when you contact the Society?
4
(0.5%)
721
(99.5%)
Yes
Overall, how would you rate your satisfaction with the
services MSWA is providing you?
14
(2%)
726
(98%)
No
Satisfied
Dissatisfied
The anonymous information we receive helps us to better
understand our Membership group and their needs.
Age and sex of responders
250
200
150
100
50
0
31
152 172
122
11 84
8
1 8 33 29
Under 18-24 25-34 35-44 45-54 55-64 65-74 75Yrs
18Yrs
+
Year of Diagnosis
300
250
200
150
100
50
0
Length of Membership
150
100
50
0
Female
Male
43
47
37
1 7
30
40’s 60’s 70’s 80’s 90’s 2000-
2005
110
96
79
100
198
114
169
273
2006-
2014
137
20Yrs+ 15-20Yrs 10-14Yrs 5-9Yrs

Lifting the curtain
on counselling
Leonie Wellington
Hand Therapy
Program
Amanda King, Occupational Therapist
Counselling is something that seems to still have a stigma
attached to it. I cannot tell you the number of times I have told
someone what I do for a living, only to watch them fumble for
excuses, ending the conversation and hurriedly putting some
distance between us. I am never certain what they think I
may do to them. Alternatively, people seem to believe that
what I do is fix people and problems by telling people what
to do and giving advice. Hopefully, below I will be able to
lift the curtain on what counselling is, and take away some of
the misconceptions.
Counselling is most often provided as hourly appointments
on a weekly or fortnightly basis for a designated period of
time. The initial appointment is often the time to explain about
confidentiality, answer questions, and assess what you want
from the counselling process. This allows the counsellor a
starting point to collaborate with you based on your needs
as you see them. It may be the beginning of setting some
achievable goals or targets. As your counsellor is an objective
outsider, there is no personal agenda, just an interest in
hearing your perspective of what you are experiencing.
At MSWA, our team of counsellors are all university trained
professionals. What does that mean? It means we are trained
to listen, withhold judgement, assess safety, and create
boundaries and structure to facilitate reflection and discussion.
Counsellors may use a range of techniques to do these things,
but first and foremost comes creating a relationship of trust.
Counselling is all about developing relationships with people
that are safe and confidential. Counselling is not something we
do to people; it is about creating, supporting and facilitating
exploration of behaviours, feelings or circumstances that are
not allowing someone to live the way they want to be living.
Essentially counselling can be seen as a positive investment
in yourself. Feedback we receive from Members about what
they gained from counselling includes: the benefits of being
heard without judgement, learning ways to communicate more
effectively, being able to see more clearly why they make the
choices they make, feeling supported and safe when things
are difficult, feeling capable and able to make changes, not
feeling alone, and being able to be honest and open.
There is always some risk when entering into counselling
that you may uncover some things you were not expecting.
By being honest around the experiences you have in the
counselling session, you allow your counsellor to work with
you on the areas you want to address at that time.
Counselling is about people. This being the case, it then
makes sense that not all counsellors are right for you.
As counsellors, we are aware of this and can discuss referring
you to someone who may be a better fit. Equally, in our role
as professionals, if we recognise something that is outside
the realm of our expertise, we will discuss with you options
for accessing more specialised assistance. Essentially,
counselling is about you and your needs, with the counsellor
providing the safety and empathy for you to honestly and
openly do what you need to do.
It can be a scary experience taking that first step of an initial
appointment, but it may also be the first step to getting to
where you want to go.
If you would like more information regarding the
counselling service, or would like to make an
appointment, please call 9365 4811.
At the beginning of this year, the Occupational Therapy
Department at MSWA initiated a new clinic looking specifically
at hands and upper limbs. This has been a great success,
and I would like to thank everyone involved in setting up the
clinic and all the Members who have attended so far.
People have attended reporting a range of symptoms,
including loss of sensation, loss of strength or dexterity, and
an increase in tremor affecting their everyday life.
If you would like to make an appointment, we are
now operating Tuesdays, Wednesdays and Thursdays.
Please contact Amanda King on 9365 4891 or
amanda.king@mswa.org.au
Clarkson Physiotherapy
Exercise Program 2015
This new physiotherapy exercise program was
introduced in January 2015 in Clarkson, Perth. This
is an additional program within the MS Physiotherapy
services, and will benefit Members living in the outer
northern suburbs, who find it difficult or are not able to
attend programs in Wangara and Beechboro.
The Clarkson Program is currently aimed at MS
Members who are independent, able to walk without
an aid, and can get themselves onto and off the floor.
This program is suitable for Members who are looking
to gain the benefits of strength, balance and flexibility
training in order to maintain and improve their fitness
and well-being. The program will also provide a means
for more social interaction among Members. Exercises
are performed at the individual Member’s fitness level,
and are supervised by Physiotherapist, Shannon.
The Anthony Waring Clubroom facility provides
a large function room where all floor/standing
based exercises are completed. Additionally, there
is a large field and an adjacent walking path.
On-site parking is available.
WHERE: Anthony Waring Clubrooms
Victorsen Parade, Clarkson 6030
WHEN: Every Monday (excluding Public Holidays)
9:30am – 10:30am
If you live in the greater northern suburbs of Perth and
feel this program may be suitable for you, or would like
to learn more, please contact the MS Physiotherapy
Department at Wilson on 9365 4834.
8 Winter 2015 The MS Society of Western Australia The MS Society of Western Australia Winter 2015 9

Round-up of research
and other items of interest
Sue Shapland RN, BN
Here we bring you research summaries sourced from various
web sites around the world.
PrevANZ Update
PrevANZ is a world-first clinical
trial that will test whether oral
vitamin D supplementation can
prevent MS in those at risk of
developing the condition.
Funded by MS Research
Australia, combined with
significant funding by MSWA,
this clinical trial will focus on the possibility of
using oral vitamin D supplementation to prevent a diagnosis
of MS following a person’s presentation with a first ‘attack’
suggestive of MS.
There are currently over 60 people enrolled, but the target
is 240 people with Clinically Isolate Syndrome from around
Australia and New Zealand. The trial will take a total of four
years to complete, with results expected in 2017.
Anti-LINGO
Experimental drug
found to repair
nerve damage
A Phase-2 study of experimental
antibody anti-LINGO-1 has been
found to repair nerve damage in
people suffering from MS.
The drug was tested on 82 people suffering from acute optic
neuritis, a condition that is characterised by loss of myelin
within the optic nerve. It is thought that half of all people with
optic neuritis will go on to develop MS. Participants were
treated with high dose steroids and half were then chosen
to receive anti-LINGO-1. Participants were assessed every
four weeks for six months. Findings showed that 53% of the
people who were given the drug had recovered to normal or
nearly normal. Source: International Business Times.
Researchers identify new potential
genetic risk factor for relapsing-remitting
MS in women
Although MS is not strictly hereditary (directly transmitted
from parent to child), the risk of developing MS is higher
among siblings or children of a person with MS compared to
the general population. This inheritance pattern suggests that
genetic factors play a role in determining MS risk.
A study published by Dr. Anne Boullerne, Douglas Feinstein and
colleagues in the journal American Society of Neurochemistry
(ASN) Neuro has identified a new genetic risk factor for the
development of MS.
The authors identified a genetic variation in a family in which
five siblings, but neither parent, were either diagnosed
with or suspected of having MS called a single-nucleotide
polymorphism (SNP) in a gene called STK11. This has
traditionally been associated with tumour suppression,
but has also been shown to play a role in the regulation of
immune cells and the formation of myelin around nerves. The
researchers then determined whether this genetic variation
in the STK11 gene is linked to the risk of MS in a genetic
population study.
DNA samples from over 1,400 individuals were screened
– 654 with relapsing-remitting MS, 100 with primary
progressive MS, and 661 healthy controls – to determine if
this genetic variation is more common in individuals with MS
compared to those without the disease.
The findings from this study have placed the STK11 genetic
variation as one of the strongest reported genetic risk factors
for the development of relapsing-remitting MS in women,
while opening up the possibility of targeting cells harbouring
this variation with drug therapies.
Reported by the MS Society of Canada.
High doses of biotin in
chronic progressive
multiple sclerosis:
A pilot study
This pilot study aims to assess
clinical efficacy and safety of
high doses of biotin in patients
with progressive MS. The
preliminary data suggests that high doses of biotin might
have an impact on disability and progression in progressive
MS. Two double-blind placebo-controlled trials are ongoing.
Source: msard-journal.com
Comment: Biotin is a B-complex vitamin also known as
vitamin H and is found in small amounts in numerous foods
including egg yolks, nuts, berries and cauliflower.
Fatigue, Sleep Quality,
and Disability in
Relation to Quality
of Life in Multiple
Sclerosis
Fatemeh Moghaddam Tabrizi,
PhD; Moloud Radfar, PhD
From the Nursing and Midwifery Department, Reproductive
Health Research Center, Urmia University of Medical
Sciences, Urmia, Iran.
Quality of life (QOL) is impaired in multiple sclerosis (MS) in
part due to physical disability. MS-associated fatigue (MSF)
and poor sleep are common and treatable features of MS
which affect QOL.
The study, with 217 participants, sought to assess the
association between fatigue, sleep quality and quality of
life in people with MS. The researchers observed strong
correlations between QOL, fatigue, and sleep quality in the
participants. The findings support routine screening and
monitoring of fatigue severity and sleep quality and their
effects on QOL.
Understanding Drivers of Employment
Changes in a Multiple Sclerosis Population
Karin S. Coyne, PhD, MPH; Audra N. Boscoe, PhD; Brooke M.
Currie, MPH; Amanda S. Landrian, BSTodd L. Wandstrat, BS
Pharm, RPh, PharmD.
This study aimed to increase understanding of the key
symptoms and factors leading MS patients to leave work or
reduce employment.
Twenty-seven MS patients who reported leaving the
workforce, reducing working hours, or changing jobs due
to MS within the past six months, were recruited from four
clinical sites in the US. Patients participated in semi-structured
interviews to discuss MS symptoms and reasons for changing
employment status.
Physical symptoms (e.g. fatigue, visual deficits) were the
most common reasons (77.8%) for employment change, and
40.7% of patients reported at least one cognitive symptom
(e.g. memory loss). Fatigue was the most pervasive symptom,
affecting both physical and mental aspects of patients’ jobs.
Fatigue was the most common symptom associated with
decisions to leave or reduce employment and can lead to a
worsening of other MS symptoms. Comprehensive symptom
management, especially fatigue management, may potentially
help patients preserve their employment status.
Read more at:
mswa.org.au/
researchupdate
10 Winter 2015 The MS Society of Western Australia The MS Society of Western Australia Winter 2015 11

Occupational therapy
specialising in function
Sandra Wallace Manager OT
WA MS research
opportunities
In the ‘old days’ when I was a student, an occupational
therapist (OT) was known as a ‘basket weaver’. In fact, I even
had to do some basket weaving when I was studying! Basket
weaving should not be laughed at. It is surprisingly hard to
get a good, even tension in the basket, and to keep the sides
straight. But that is not the purpose of this article. With basket
weaving not being for everyone, it is a good thing we looked
beyond the humble basket.
The OT Department at MSWA now comprises 12 OT’s, a Speech
Pathologist, two OT assistants and a Camps and Recreation
Coordinator. Only a few of these staff are full time. Our three
full-timers essentially perform the core OT roles of home
assessments, equipment prescriptions, and funding applications
where required. However, the rest of the team have developed
some specialised skills which are of great benefit to our Members.
We can’t each know it all but, by upskilling in specific areas, we
can provide a broader quality service for Members.
I will further explain each of these roles here, and introduce
the staff involved.
Assistive technology
Wherever we look, the application of technology is continually
expanding and making points of access easier for all. With
computer access, it is amazing what can be done online –
banking, shopping, communication, pursuit of personal interests;
it is all there. We find there is an increasing need for other home
environment technologies, such as operating the TV, doors and
other switch devices. We receive a lot of requests for information
regarding care alarm pendants and telephone access.
Our OTs have good base knowledge in these things, but Robyn
has specialised in specific unique equipment that needs to be
customised for users. She has established links with others
in the industry that further promote good assessment and
best outcomes.
Sleep issues
Adults generally are not good sleepers, but this is compounded in
neurological conditions such as MS. After doing some studies in
sleep disorders, Bel came to us with her skills and has advanced
our knowledge and effective management of sleep disorders in
MS. We now have a range of equipment to trial with Members to
help with body temperature changes and positioning to alleviate
discomfort. Some Members have benefited from learning how
good sleep routines can improve sleep quality. Other sleep
disorders can be present and Bel is able to assess and identify
when further sleep studies are required. Poor sleep impacts on
functioning during the day, which is true for everyone.
Hand therapy
Amanda recently commenced a hand clinic for Members. She
is completing an assessment, and making recommendations
for hand exercises to address specific concerns. A hand clinic
was set up at Wilson, but not everyone who needs some
therapy can attend the clinic, so Amanda has researched home
therapy programs and will gather information and outcomes
over the coming 12 months to enhance our knowledge and
effective recommendations.
Fatigue and relaxation
The OT department continues to offer fatigue management
group programs for Members, varying the venue and days
to maximise participation. Research supports this program
as an effective method to improve quality of life and energy
levels. We recognise that there are lots of things that can drain
our energy, poor sleep and stress being two common causes.
These have been incorporated into the fatigue management
program. The group format is effective as Members have
benefited from the sharing of their collective ideas.
Cognition, thinking and attention
Heather has been working quietly in this area for a few years
now. Changes in thinking can cause alarm for Members, and
it can be reassuring to talk to someone who can keep it all in
perspective. There are effective strategies to adopt, and healthy
lifestyles help to ensure your brain keeps as healthy as possible.
Heather can provide information, undertake assessment, and
recommend strategies that target specific needs.
Keeping intimacy
Narelle has a sound knowledge around the impact of MS on
intimacy. The literature stated that people did not feel they
could raise concerns with their health practitioner, and hoped
the practitioner would ask them how these things were going.
Narelle is available to share her knowledge and support
Members in ways to maintain good healthy relationships.
Speech pathology
Michelle has been on the team now for over a year, and what a
full year that has been. Her role is highly valued by the team, and
we know that she has enabled Members to have speech and
swallowing concerns addressed much sooner than waiting for
public health appointments. She is also available to just speak
with Members who are not sure what the Speech Pathologist
does, and when one might benefit from seeing one.
The diversity of this team improves the strength of MSWA
and our services to our Members. If you need to speak to
anyone on the team, phone Wilson reception on 9365 4888
to be put through to a Therapist. We are happy to take
calls, answer questions, and arrange visits when required.
We have been advised of several MS research projects
underway in WA that may interest eligible Members. You
can find summaries of the projects below, but if you would
like more details please ring the listed contacts or Pam on
9365 4869 for more information.
Enhancing balance and
gait in patients with MS –
combined use of balance
training with non-invasive
brain stimulation. Funded
by MSWA through an MSRA
incubator grant to Professor
Soumya Ghosh.
Participants need to be
over 18 years of age, have
relapsing-remitting MS and
have mild to moderate balance
impairment (including falls).
For more information, contact David or Jenny at the
Western Australian Neuroscience Research Institute
(WANRI) 9346 3966.
Narrow band UVB phototherapy for patients with
Clinically Isolated Syndrome. The PhoCIS Study. Funded
by NHMRC.
This study is for people who have had a first-time episode
of inflammation within the brain, spinal cord or optic nerves
(called a first demyelinating event), indicating they are at risk
of developing MS. The research is testing whether a course
of narrow band UVB phototherapy decreases the risk of
developing multiple sclerosis.
For more information, please contact Professor Prue Hart,
Co-ordinating Principal Investigator, on (08) 9489 7887,
or Project Officer Sian Geldenhuys, on (08) 9489 7888 or
0400 438 230.
What it means to live with
MS while being a mother
of young children.
This project is a course
requirement for the Bachelor
of Arts (Psychology) Honours
at Edith Cowan University.
Project researcher, Astrid is
living with MS. She is seeking
mums with MS who have
children aged eight years and
under. You will be asked to share your story, and will be asked
questions on your feelings and views on this experience.
Please contact Astrid on (08) 9562 5963 or 0423 936 231
or email her at aplumbpa@our.ecu.edu.au
Do you know someone aged 60+ willing to participate in
a study on health and wellbeing?
Participants will be reimbursed and receive a report on
their results.
Please contact Michelle 0n (08) 9266 2944 or email
michelle.jongenelis@curtin.edu.au
Do you have pain which
has developed in the last
12 months? A Griffith
University Queensland
online study.
We are interested in why
some people develop
chronic pain and how
they cope with persistent
pain. There are three
questionnaires in total.
One to be completed now, a second in three months and the
third in six months. The questionnaires cover a wide range
of topics, including your diagnosis, pain levels, physical
symptoms, your background, and other related factors.
The questionnaires can be completed online, by phone or
through a booklet.
For more information contact Elise Henne on 0438 451 053
or email elise.henne@griffithuni.edu.au
12 Winter 2015 The MS Society of Western Australia The MS Society of Western Australia Winter 2015 13

Trial Sites Update - April 2015
Mark Douglas, Project Officer, National Disability Insurance Scheme Trial
From the
Social Welfare Officer
Irene Willis
The National Disability Insurance Scheme (NDIS) is fast
approaching the half-way point of the two year Western
Australia (WA) trial that commenced on the July 1 2014.
Two separate models of the scheme are being trialled in WA
in selected areas of the state.
• The Commonwealth scheme (NDIS) trial site is operating
in the Cities of Swan, Kalamunda and Mundaring.
• The State based (NDIS - My Way) trial is being conducted
in areas of the Lower South West of the state (around
Busselton) and from the 1st July, 2015, will be extended to
include people living in the local government areas of the
Cities of Cockburn and Kwinana.
WA agreed to the trial of the two schemes so that the best
features of each could be considered in the development of
the final version of the NDIS.
The Joint Standing Committee for the NDIS conducted two
hearings in April 2015 in WA to review the implementation of
the NDIS and the NDIS - My Way trials.
The committee is tasked with reviewing:
• the implementation of the NDIS;
• the administration and expenditure of the NDIS; and
• any matter in relation to the NDIS referred to the committee
by a resolution of either House of the Parliament.
Information was sought from participants, service providers
and representatives from both the NDIS and NDIS My Way
trial sites to determine the success of the respective schemes
and the key differences between them.
NDIS contact details:
For people living in the local government areas
of Swan, Kalamunda and Mundaring:
NDIS: ndis.gov.au
Telephone: 1800 800 110
Eligibility Check: myaccesschecker.ndis.gov.au/
Dr. Ron Chalmers from the Disability Services Commission
provided information about the State based My Way trial,
and Marita Walker from the NDIS Midland office provided
information about the Commonwealth trial at the Midland
hearing on the 9 April 2015.
Participants and service providers at the Midland meeting
spoke of their experiences with the Commonwealth Scheme,
and what they felt had worked well for them and the areas
they felt could be improved.
One of the concerns raised with MSWA by participants in
the Commonwealth scheme was that their final plans were
not inclusive of all supports required, and that too little time
had been spent in the development stage. This resulted in
plans being developed and implemented without sufficient
resources allocated to meet their needs.
MSWA wants to provide ongoing assistance to all our
Members living in the trial site areas, and we strongly
encourage the participants to have representation from MSWA
during the planning stage. We believe this will improve the
quality of their plan and ensure that the participant receives
funding for all of the services that they will require.
The MS Society has, and will continue to provide information
to our Members living in the affected areas, and we are
actively seeking feedback.
If you would further information, please contact
Project Officer for Member Services - Mark Douglas on
9365 4824.
NDIS – My Way contact details:
For people living in the South Western Region &
Cities of Cockburn & Kwinana:
NDIS – My Way: disability.wa.gov.au/
wa-ndis-my-way/wa-ndis-my-way/
wa-ndis-my-way-model/
Telephone: 1800 996 214
The Social Welfare Officer at MSWA provides psychosocial
assessments of Members and their families to identify areas
where supports or services may be required.
The Social Welfare Officer also looks at how MS is impacting
on the Member’s physical, social, emotional and financial
aspects of their lives, and that of their family or primary carer.
We can assist in sourcing appropriate supports and funding
for a person with MS to remain living as independently as
possible in the community. We deal with:
• case management;
• information on benefits and entitlements relating to
Centrelink, housing, and the Disability Services Commission;
• advocacy;
• liaising with other services providers, hospital staff and
government departments;
• referrals to other health professionals, both within the MS
Society and externally;
• providing emotional support.
National Disability Services (NDS) has been contracted
by the Department of Transport to support a Perth trial
of London Taxi Cabs for people who use a wheelchair.
While the features of the London Taxi Cab will not suit
all, a successful trial could almost double the number of
suitable taxis for passengers who use a wheelchair.
NDS are seeking expressions for participants to take part
in a four week pilot to be run between June – July 2015.
Participation in the trial will depend on the size of the
passenger’s wheelchair, as access in London Taxi Cabs
is limited. Ideally, trial participants will:
• use a multipurpose taxi at least four times a week;
• have a wheelchair that will fit a 70cm x 100cm
space; and
• be able to reverse flush against a wall.
The Social Welfare Officer also works closely with families
and primary carers. We acknowledge the very important
role they play in supporting and assisting a person with MS.
We provide support and assistance in the following areas:
• Facilitating Carer Support groups and retreats.
• Providing information and support in accessing residential
and in-home respite, and funding.
• Self–care.
• Advocacy.
• Emotional support.
NDS Taxi trial
Seeking expressions of interest to participate
in the Perth trial of London Taxi Cabs
For more information, contact us on 9365 4888.
Travel in a London Taxi Cab during the trial will occur only
when convenient for the passenger, and will cost the same
as travel in any other taxi.
Potential participants will be invited to a forum to learn
more about the trial and to ascertain individual needs and
suitability to participate in the trial.
To register your expression of interest, please contact Matt
Bullock, Senior Policy and Projects Officer, Passenger
Services, Department of Transport, on (08) 9218 3656 or
email matthew.bullock@transport.wa.gov.au
14 Winter 2015 The MS Society of Western Australia The MS Society of Western Australia Winter 2015 15

The invisibility of loss
Leonie Wellington
Living a meaningful life
with multiple sclerosis
Sook Ling, Tho
Here at MSWA, we try to empower our Members to live well,
and provide them with information to make informed choices
about how they may go about doing that.
What can be forgotten, in looking toward the future, is taking
the time to grieve what has been lost. Living with multiple
sclerosis is a unique experience for every person diagnosed,
as are the many losses that may go along with that.
In our society, grief and loss are inextricably linked to death
and dying. The definition of loss, however, actually relates
to the feeling of grief after losing someone, or something of
value. So, in fact, grief and loss can be experienced daily in
varying degrees, depending on how much value a person
places on the loss.
Unfortunately, not all losses are viewed as equal in our
society, nor are some even recognized as requiring time to
grieve. This can be difficult for people living with an ongoing
chronic health condition that is unpredictable and has losses
that are often invisible to those around them.
Losses can accumulate over time. It may be a series of smaller
things on an ongoing basis that build up to what may become
an overwhelming sense of grief. Much like anxiety, grief can
sneak up on us and we are left asking ourselves, “Where did
that come from?”
It is easy to minimize loss. People will often compare
themselves to others and reflect that their loss is not as great,
and so therefore doesn’t deserve sadness. I cannot stress
this enough – just because someone’s circumstances seem
worse than yours, in no way does that make your own loss
any less important.
Those close to a person living with MS can also be affected by
experiences of loss and grief. Again, it may seem inappropriate
to acknowledge these feelings, as you are not the one who
has been diagnosed with MS, but loss of certainty about the
future, or the changing roles within families and relationships,
can all generate feelings of grief.
It is helpful to remember that by not allowing yourself or
others permission to grieve, it may then come out in ways
that may be harmful to your relationships and your general
wellbeing. Acknowledging loss, and the impact it has on you
or those close to you, allows for an opening to adjust and
change and live well beyond that experience. It is one of the
ways to build resilience.
Loss is a normal part of life, but often is not given
the attention it requires. If you would like any further
information, or would like to speak to one of our
counsellors, please contact us on 9365 4811.
I still remember the first time a neurologist told me I might
have MS. I accepted it in a state of disbelief. I was totally
ignorant of this unpredictable autoimmune condition, and its
complications. I simply couldn’t believe that such common
symptoms like hand numbness and fatigue, could lead to
blindness or paralysis. After seeing three neurologists - two in
Malaysia and one in Perth - I had the answer: Yes, I had MS.
That was in 2012, after which the way I saw things in life
began to change. I used to take my health for granted, coming
up with excuses for not exercising and eating healthy. I was
a dedicated civil engineer and worked under extreme stress,
but after the diagnosis I realized just how important our
health and family are to us. That’s when I knew I had to change
my lifestyle and adopt a positive mindset to fight MS. I am
now 40 years old with a beautiful daughter and a very
understanding husband.
I am still an active civil engineer here in Malaysia and will
migrate to Perth eventually to continue my professional
career. MS hasn’t stopped me from working, or going to
construction sites, or doing household chores; however, I
have learned to delegate work to my subordinates, and to
give some household chores to my family.
I also attend Qigong classes and regularly exercise. I like
hiking, walking, running, swimming and going to the gym.
My hand numbness worsens with heat. Therefore, I exercise
indoors or in the morning.
Eating healthy food is just as important. I remember my
neurologist telling me to have a healthy balanced diet —
carbohydrates, fats, proteins, vitamins, minerals and water,
all in their proper proportions, so as to maintain good health.
My last MRI scan in December 2014 showed that my MS
is now in remission. My symptoms have not worsened
and neither are there any new signs of activity since my
original diagnosis in 2012. I chose not to take medication,
and consider myself lucky MS has not impaired my vision or
mobility; however, because MS is so unpredictable, I simply
can’t take things for granted.
Living with MS is not easy and can be frustrating at times.
People around us may not understand how this chronic illness
affects us physically and mentally. However, MS is not a death
sentence either. It is different for every individual. It becomes
our role then to live our own lives to the fullest, and to make
our lives meaningful and beautiful.
Counsellor in the South West
Leonie Wellington
After making the trek from Perth to Bunbury once a week
for the last four years, it is a privilege to be able to move
myself, and the role, to the area full-time.
The importance of regional services is something I am
passionate about, so to be able to grow the services
provided by MSWA in the South West is an exciting
opportunity. I am now working between the Bunbury and
Busselton offices, Monday to Friday, providing counselling
services for our local Members and their families.
If you would like more information about the service, or
would like to book an appointment, you can contact me or
leave a message at the Bunbury office on 9791 2472, or at
the Busselton office on 9754 2320.
Perth Zoo recognised as WA
Companion Card affiliate of the year
An excerpt from a recent National Disability Services (NDS)
news update read:
“Over the past years, we’ve received lots of positive
feedback about the fantastic experiences that Companion
Card holders have had when visiting Perth Zoo,”
Julie Waylen, NDS WA State Manager.
NDS recognised Perth Zoo as the 2015 Companion Card
Affiliate of the Year during an awards presentation on 27
February 2015. The award is presented to an affiliated
business or organisation for its outstanding customer
service to people with disability, their families and carers.
Other highly commended affiliates included City of
Wanneroo (Aquamotion), Event Cinemas, Greyhounds
WA (Mandurah), Public Transport Authority, and Railway
Heritage WA.
The Companion Card is a card issued to people with a
significant and permanent disability who require attendant
care support from a companion to participate at most
venues and activities.
For further information, or to request an application form,
call 1800 617 337 or email wa@companioncard.asn.au
16
Winter 2015 The MS Society of Western Australia
The MS Society of Western Australia Winter 2015 17

That’s life
with Narelle
Narelle Taylor
Protect yourself
from the flu
Here, in the nursing home facility where I live, we sit in
the same place every day for each meal, with the same
people, unless we’ve gone out or chosen to stay in our
room. In this little meal time story, to protect the innocent,
everyone will be referred to in code.
D4 had been chatting to her son in the sunshine in the
courtyard when the clock chimed 12 – mealtime — and
having noticed all of the activity at our table, they hurried
in to join us.
D4 began coughing when we greeted them, and I
suggested she drink the glass of water in front of
her, but she told me not to carry on…that I had been
coughing earlier and that she had said nothing. I replied
that nothing had been said to me because I only had a
lady-like tickle in my throat, whereas her coughing would
blow a dog off a chain.
Coughing can be avoided, according to my neurologist,
by firstly not talking whilst eating, then concentrating on
whether you are breathing or swallowing. My advice is to
chew thoroughly before attempting to swallow, or you’ll
end up with an inane look on your face and a huge lump
in your throat, like a python that swallowed a pig. What
follows, though, was all, or nearly all, my fault.
You see, I had my friend Suzi come and stay with me here
at the nursing home. We have been friends for over 30
years, after meeting in an isolated mining community on
the north-western coast of the Gulf of Carpentaria, and
we’ve kept in touch over the years, visiting each other
whenever possible as we’ve moved around Australia.
She has always been tonnes of fun.
One day, Suzi said she’d fly across from Brisbane to see
me and stop over in the visitor’s flat here at the nursing
home. I was really looking forward to it. Suzi joined us
for tea and toast each morning, charming and cajoling
my dining room compatriots, even though she had an
attack of shingles.
On her last night here, we went (her on foot, and me on
my powered scooter), to a local restaurant. One glass of
wine each was more than we felt like, so we left early and
started back to my nursing home. The footpaths were full
of revellers, and as I crossed the road and travelled up the
ramp on the other side, the rear wheels went up over the
end of the ramp, tipping the scooter over, and I fell off.
A small crowd immediately gathered (thank goodness
we were sober), and other than the indignity of it all,
I was worried that Suzi (who is half my size and had
shingles), would try and lift me back onto the scooter.
We were both saved the trouble when a strong member
of the gathering, growing crowd helped me stand up and
sat me on my scooter. Suzi will no doubt mention the
incident in the book she has been promising to write one
day, and then I’ll be famous.
Suzi and I came back here immediately to be greeted at
the door by D3 who said, “Have you two been playing up?”
“Sure”, Suzi replied, “like a couple of second-hand lawn
mowers”.
Our plans to have an evening of fun may well have been
thwarted by gravity, but if memory doesn’t include me
tipping over my little powerchair, then we had a very nice
time.
Having farewelled Suzi the following day, I went to
my usual place at the table for lunch, but the cleaner
had moved D4’s chair to a spot usually left vacant
for my wheelchair. D2 was already there, obsessively,
compulsively repositioning her cutlery…chink, chink,
chink…all the while telling D4 that she was in the wrong
spot. I assured her that I was perfectly alright in my new
place at the table, but D3 was upset, saying that if she
had done something wrong, she would return to her
room. I took D3’s hand and explained that she was not
at fault, telling her that D2 was upset because D4 and I
were in each other’s place at the table, hoping that D2
would understand.
Chink, chink, chink…then D2 took the serviette from in
front of D4, unfurled it like a matador and screeched,
“That’s Narelle’s serviette! You’re sitting in the wrong
place”. When D2 stood up, D4 said “Sit down, you crabby,
old so-and-so”. D3 and I cast our eyes about, looking
anywhere other than at two naughty ladies scrapping
over nothing!
Chink, chink, chink! Shingles will get better. Dementia
will get worse. Multiple sclerosis will stay the same,
remit, or progress. C’est la vie.
A yearly flu vaccination for everyone six months and older is
recommended as the first step in protecting yourself against
the flu. It reduces the chances of contracting and transmitting
the flu. This is especially important for people particularly at
risk of complications arising from influenza, and those in
close contact with at-risk people.
Influenza is highly contagious and spread by an infected
person coughing or sneezing virus droplets into the air. Others
then breathe them in and become infected. It’s important to
remember that touching contaminated surfaces (including
hands) and then touching your mouth, nose or eyes can also
lead to infection.
You can minimise the spread of the virus during flu season
by practicing good household and personal hygiene, avoiding
close contact with others if you or they are ill, and covering
your mouth and nose when coughing or sneezing.
The bad news:
• Influenza viruses can survive for an hour or more in enclosed
environments. This means contaminated respiratory secretions
can be picked up even without someone coughing or sneezing
near us.
• Even before we display symptoms, we can be shedding the
flu viruses and infecting people around us.
• Influenza viruses are characterised by constant evolution.
This means there can be a new threat every year.
The good news – you can protect yourself and others by
practicing good hygiene etiquette:
• Turn away from others when sneezing or coughing.
• Cover your mouth and nose with a tissue or your sleeve.
• Use disposable tissues rather than a handkerchief.
• Put used tissues into the nearest bin.
• Wash your hands or use an alcohol hand rub as soon as
possible afterwards.
Hand washing is the single most effective way of killing
the flu virus and limits the spread of influenza and other
respiratory infections.
Wash your hands with soap and water or an alcohol-based
product (gels, rinses, foams) that doesn’t require water:
• after coughing, sneezing or blowing your nose;
• after being in contact with someone who has a cold or flu;
• before touching your eyes, nose or mouth; and
• before preparing food and eating.
Stop the spread in your household
Flu viruses can survive more than eight hours on hard surfaces.
Regular cleaning of frequently touched surfaces such as
door handles and benches will help avoid contamination.
Flu viruses can be inactivated and removed with normal
household detergents. Keep personal items such as towels,
bedding and toothbrushes separate. Don’t share cutlery and
crockery, food or drinks.
This information, and more, is available at flusmart.org.au
18 Winter 2015 The MS Society of Western Australia The MS Society of Western Australia Winter 2015 19

Disclosure –
to tell or not to tell?
Mike Smith
Friends
Ros Harman
Disclosure is tricky. When diagnosed with MS, the event can
either go by noticed or unnoticed to the outside world. This
can then determine what path you may take with disclosure.
You often get advice not to disclose, and often for very good
reasons. There are a number of instances where it can be held
against you. In my case, it was reasonably public right from
the start. I was working on a major underground project, in a
very tight team and in a small town, so there was nowhere to
hide even if I had wanted to.
The onset of my initial symptoms resulted in me taking some
time off to get intravenous steroids. I then went back to work,
only this time with unremitting sensory symptoms that are
still with me to this day. At this stage it was the netherworld
of waiting for confirmation of the diagnosis.
Six months later, there was a subsequent event which led to
confirmation of the diagnosis of MS. On returning to work,
I informed my manager at the time and left with tears in my
eyes. It was all just too traumatic for me.
Subsequently, as I moved around the world working on
various projects, I have informed each employer of my
situation. Almost without exception, the result is the same,
irrespective of nationality and country of location. Following
a stunned silence, I sit down with the manager, inform them
and after that, literally years go by without a mention.
You may well ask, “Why don’t you initiate some discussion?”
A valid question, but having made the disclosure in the first
place, I don’t want to run around too much and reinforce or
stimulate anything unnecessarily from my side.
However, don’t be fooled. Even though no one may be talking
to you directly about MS and how it impacts on you, people
will still be talking - just not to you.
I spent quite some time working for a global mining company
and one of the key leadership aspects was that of establishing
an environment of “visible felt leadership”. The focus was on
leadership and the quality of genuine engagement with your
team. In my experience, this can often translate into, “Do as I
say, not as I do”. This was reinforced to me twice when I was
directly and indirectly refused an opportunity to be considered
for a transfer.
On the first occasion, I had enquired about moving to an
offshore location to an executive with whom I had never
worked. The response was, “That may be an issue, because
you would have to be medevac’d to an offsite major location”.
This response came from nowhere, and I actually had to stop
and think of what he was talking about. It then dawned on me,
and I asked if this was related to my MS. He responded, “Yes”.
I was then advised to keep looking for other opportunities.
Four years later, out of the blue, and completely unprompted, I
was informed by a colleague that he had mentioned my name
to the same executive as a replacement, and the response
was, “I don’t want sick people here”. On the first occasion, I
just moved on, deciding it was not worth getting upset, but
upon hearing the same message from a completely different
source, I was furious. Here I was, running projects in the
multi-millions of dollars, for ventures that would ultimately be
worth billions, and the perception was that I was ‘sick’!
My wife constantly advises me not to tell, as in my environment
MS is regarded as a sign of weakness. Maybe my wife is
correct; the silence that greeted me after I had the courage
to disclose, and the reinforcement from third parties, seem
to bear out her opinion, but given my achievements, I do not
feel that at all.
I fully recognise that our world has lots of variety – that’s what
makes it so interesting - but in my case, disclosure and the
subsequent reaction really unpacks some true human traits.
In this day and age, when there is so much press and rhetoric
about understanding and compassion, one has to be careful
about just how disclosure will really play out. The cynic would
say that in my experience disclosure has been analogous to
having a brother in jail – everyone knows about it, but no one
talks about it.
These experiences I’ve shared are my own; they are simply
my observations. Much the same as MS symptoms, no one
person is the same. Similarly, the reaction around you will be
different. Judge your own environment.
Has my disclosure held me back? Apart from the annoyance
of one very senior executive, I would have to say, “No”. While
my symptoms are still with me as a constant reminder, I have
been able to actively engage myself in my profession, and to
work and travel globally.
As a closing thought on disclosure, you need to be aware
before you have to beware! Remember though, whatever you
do – Aziko wo! (Zulu for “don’t stop”) There is too much to lose.
When I moved house nine years ago, I made some new
friends. I bought myself an electric wheelchair to get around,
and soon discovered I automatically gained a whole bunch of
friends from the group “People with Disabilities Who Hang
around Angelo St”.
This group included Bill - a gnarly, little old man who looked
a lot like Popeye in a wheelchair, and was always keen to
stop for a chat. Over the next couple of years, I heard his life
story, as he recounted it in his cheerful cockney accent. He
had joined the merchant navy in Britain at 14 years of age and
travelled far and wide. Terrible arthritis began to attack his
joints at the age of 40, but he always had a smile for me, and
was well known in most of the local shops. He lived alone in a
ground floor flat and visited the shops every day.
One day he asked if he could buy me a cup of tea to celebrate his
80th birthday. I am ashamed to say I was faintly embarrassed
when we went into the cafe together in our electric wheelchairs.
Poor old Bill found steering between the tables and chairs a little
difficult with his misshapen hands, and he bumped most of the
furniture as he crashed and banged his way up to the cash
register. He ordered tea and cakes for us both, shamelessly
took a large handful of paper serviettes which he shoved into
his pocket, then careened back through the tables to join me.
During our conversation he told me he was going to hospital the
next day for a small medical procedure. “It wouldn’t be a bad
thing if I don’t wake up from the anaesthetic,” he said. “There
are worse ways to go.”
Over the next few days I kept my eye out for Bill, but as time
went on and he didn’t reappear, my heart sank. I began to
wonder if his words had been prophetic. Weeks went by
and I asked around in the shops, but no-one had seen him.
Eventually, I concluded that he had gotten his wish. I hoped
I had given him a little bit of pleasure by sharing his last
birthday with him.
But the story doesn’t end there. Recently a neighbour told
me that Bill had moved to an aged care facility in a nearby
suburb. He has joined another group. I’m quite certain he is
still crashing around in his chair and flirting with the ladies.
I’m sure he has made new friends.
“No man is an island,” said John Donne in 1624. It is a curious
fact of life that everyone belongs to a group. No matter how
determined you are to be unique, it is an incontrovertible
truth that there will always be someone, somewhere, who
shares one or more characteristics with you. You may very
well try to stand alone and isolated in this ocean of life but the
reality is, as John Donne told us, we are all part of the great
mega-continent of humanity. Everyone belongs to some sort
of group, whether we like it or not.
Edward is another member of my group in Angelo Street.
He regularly sits in the sun on the bench outside the Post
Office. Edward has one wonky eye, one wonky leg, and I am
pretty sure his brain is a bit wonky too. He loves to learn and
memorize details and every time I stop for a chat he proudly
recites, “Your name is Ros and your birthday is on the 21st
of March!” Edward was born on the same day as my sister.
I know that because he reminds me every time I see him.
Sometimes, I try to start a conversation about something else
with him, but he is not really interested in anything other than
birth dates.
Edward has always finished conversations by asking if he can
borrow $1.50. About a year ago, he put the price up to $2,
which is reasonable I suppose, given the state of the economy.
I’m sure he’ll pay it all back one day, because he is my friend.
There are a few other people in my local group of friends
too. There is the woman who lives in the house with the
overgrown garden, and struggles to find employment because
of a lifelong battle with anxiety. There is the professor at a
local university who has used a wheelchair since a childhood
accident. I see these people only rarely, but we chat when
we meet.
When I was first hammered with the reality that I would be
living with MS for the rest of my life, I joined a large group of
people with something in common. It is a great solace to have
people in your life who understand what it is like to live with
MS, and who can laugh and cry with you through the ups and
downs of life. That’s what friends are for.
According to Facebook I have 57 friends. That doesn’t include
my friends Bill and Edward, who don’t have computers. Even
if half of them are relatives, I suppose that’s not bad for a
middle aged woman in a wheelchair.
20 Winter 2015 The MS Society of Western Australia
The MS Society of Western Australia Winter 2015 21

Albany Outreach News
Caroline Clarke-Smith
Bunbury Swim for MS
We have had a busy start to the year with our annual Swim
for MS held in March, so we were out spreading the word,
getting teams and sponsors to help make the day even better
than last year. It was a huge success, with $28,000 raised.
This was due to a huge effort from some teams, and has
raised the bar for next year!
We are very grateful to the local businesses that were able
to help us by donating items for prizes. Without their support,
the day wouldn’t have been so successful. Also, a big thank
you goes to those businesses that let us rattle our collection
tins on their premises.
Huge thanks to the teams who participated and swam a
massive amount of laps, while making the day so much fun.
There were so many people who helped behind the scenes
– unfortunately, too many to name - but you know who you
are, so thanks. Jenny Saibu, you are a star for the work you
do: thank you!
Albany Swim for MS
The Outreach Advisory Committee is looking into opportunities
for outings for our group, as well as another lunch - which
have always been popular - so it’s never too late to get
your ideas in. Please email us at the Albany Outreach at
albany@mswa.org.au or ring us on 9841 6651.
Maureen, our lovely MS Nurse, has been busy updating
our plans as well as keeping us up-to-date with the latest
therapies. So, if you need to catch up, give her a call.
Feedback from our local Members is always appreciated,
and we thank those who have made suggestions. It is the
Members group, so have your say. Hope to see you soon!
The Bunbury Swim for MS took place on Sunday, March 22,
and saw 69 participants swimming to fight MS! Held at the
South West Sports Centre, the event challenged teams to
swim the distance around the Inner Harbour of Bunbury Port
– or 70 laps of the pool – in ten hours! Teams dove right in
and the total number of laps swum came up to 4,200. But
the real star of the show was Emily Symons, who completed
the impressive feat of swimming solo for the entire 10 hours!
Not only that, she was also the highest individual fundraiser,
raising $1,850, exceeding her fundraising goal of $1000.
Emily was inspired to take on the challenge for her aunt and
cousin, both of whom have MS.
The highest fundraising team were Colin’s Crew, who raised
an amazing $6,800. The Bunbury swim raised $17,574 for
MSWA. All money raised from this year’s Bunbury Swim
will provide support to people living with MS and other
neurological conditions in the South West.
Thank you to all our participants, and all who donated.
Don’t forget to get your swimming caps ready for
next year!
The highest fundraising team – Colin’s Crew!
The 2015 Albany Swim for MS took place on Saturday, March 7, and
was a splashing success!
A total of 59 participants took to the pool, swimming to fight MS! Held
at the Albany Leisure and Aquatic Centre, the event challenged teams
to swim the distance around Princess Royal Harbour – all 20km of
it – in ten hours!
Teams took the plunge, and gave it their all, with an impressive 6,302
laps swum. The Grammar Turtles won the prize for most laps swum
as a team, completing 1,399 laps.
Enthusiastic supporters were also on hand to provide cheer and
encouragement to friends and family. Rebecca Hueppauff took the
crown for highest fundraiser for the second year running, raising
$4,184. The highest fundraising team were The Marines who
managed to raise a record breaking $11,338.
The Albany swim has raised $53,976 over the past three years. This year’s incredible total added to that amount,
raising an incredible $28,430. All money raised from this year’s Albany Swim will stay in the Great Southern Region,
providing support to people living with MS and other neurological conditions.
Thank you to all who took part in this year’s swim, and all who donated. We look forward to seeing you next year!
The Marines - highest fundraisers!
Camp dates 2015
The MS Camps are funded by Lotterywest and
supported by MSWA staff and volunteers. These camps
are an opportunity for participants to take a break
from their usual routines and to meet with others for a
relaxed time. Camps for the remainder of this year are
as follows:
FAMILY CAMP: for the parent with MS to attend with
their primary school-aged children. The focus is on
providing activities for the children to have fun and be
challenged with new skills.
VENUE: Woodman Point, Munster
DATE: 5 to 8 October 2015
CARERS CAMP: for family carers who support a person
with MS in the home. There are activities organised,
or feel free to have some down-time to do things
you enjoy.
VENUE: Busselton
DATE: 13 to 16 October 2015
MEMBERS CAMP: for Members in the South West to
enjoy a getaway together away from usual routines.
The facility is accessible and transport is arranged so
the time can be as hassle-free as possible.
VENUE: Denmark
DATE: 16 to 20 November 2015
For more information, please contact the Camps
Coordinator, Sumit Singh on 9365 4843
22 Winter 2015 The MS Society of Western Australia The MS Society of Western Australia Winter 2015 23

Anzac Day service
Nicola Ryan
Giselle eagerly contacted the City of Canning, as she thought
a representative from our local council would be fitting. We
were rewarded for her efforts with confirmation early in March
that Commissioner Steve Smith would be in attendance on
the day.
Our final part of the planning was a visit to our local Willetton
Bunnings, who are always very generous with their donations
of plants. This visit was no exception! Forty red petunia pots
were ordered to arrive approximately three weeks before
our event so they could be planted ready for a spectacular
show of colour. Additional white plants were purchased to
complement the red ones.
By mid-March, all main planning was complete, with only a
few minor details to put together closer to the time. It was a
matter of sitting back and counting the weeks and days till
April 22. It soon whizzed by!
Three weeks before the big day, 76 petunia pots were planted
in our raised garden beds. Lots of love and care were given
to them, and with the weather just perfect for autumn, we
were definitely not let down on the day, as you can see by
our photos!
Members, staff and volunteers associated with our Wilson
Outreach Groups began cooking in the days leading up to
the big day, to ensure the lovely morning tea advertised on
our posters didn’t disappoint. So many people commented
on the beautiful home-made food that was available after
the service.
We also collected Anzac memorabilia and had four gift packs
to give away on the day. This is how we know we had a
staggering 126 people attend our service!
Our 2015 Centenary Anzac Day Service at the Wilson Outreach
Centre was a resounding success!
The first words in regards to this service appeared a year
ago in the winter edition of the Bulletin. Having written
about our 2014 Anzac outing to the Returned and Services
League (RSL) memorial to lay wreaths, the words included
“watch this space for next year”. We had always intended to
acknowledge the ANZAC Centenary, and our celebrations did
not disappoint. In fact, they blew us all away.
The preparations for our April service began in early February.
Giselle Martin, Activities Officer and cook at Wilson Outreach,
and I, roughly discussed what would be required to conduct
such an important event. Casting our minds back to our
school days, as well as our time in Brownies and Guides, we
knew we would definitely have to have an Australian flag! A
trumpet player was also a must, as well as an important man
with medals pinned proudly to his chest - this is how a child
would describe a representative from the RSL.
We contacted the RSL Association who introduced us to Bill
Collidge, a member of the Riverton RSL. He provided us with
our first official document. The MS Society of WA ANZAC Day
Service, 22 April, 2015 Order of Service! This paper became
the back-bone of three months of planning, and we will be
forever grateful for Bill’s help and guidance.
First on the to-do list was to purchase a flag. A six metre
flag pole set with Australian flag was ordered online in early
February. The deal guaranteed a fast delivery, which wasn’t
actually the case! We were over the moon when it finally
arrived with two weeks to spare!
With the 2015 school year underway, I sent emails to our
friends at Shelley Primary. We have had close contact with
Mel, the music teacher, for the past three years. Mel was as
enthusiastic, as always, and guaranteed us that the school
choir would sing for our service.
The second email was to Willetton High School Music
Department, asking if they had a trumpeter amongst
their students who would like to participate. I received an
overwhelming yes reply from the music teacher, Brad. He
was delighted to have been asked and was very willing to
nominate a Year 11 student, Jack, who he said would be
honoured to play the Last Post for us.
Closer to home was our very own Sister Marie, who has been
part of the furniture here at MSWA for many years. Sister
Marie was asked to play the part of the “Padre” in the service.
This entailed offering a prayer to the fallen soldiers and
leading the service in the Lord’s Prayer. Sister Marie didn’t
hesitate when asked, and promptly put 22 April into her diary.
After nearly a year in the planning, the big day was here! Our
guests arrived and included Board Members, Members, senior
management, staff and volunteers. I took up my position at
the lectern as MC. Looking into the glorious sun that was
shining down on us, Shelley Primary School choir on my right,
the Australian flag flying beside me, and so many people
in front of me, I couldn’t have been prouder. Our wonderful
preparations paid off as the service went off without a hitch!
Some of us were even moved to tears, especially when the
trumpeter played the Last Post. The choir sang so beautifully,
and the Anzac Spirit was read very professionally by a Year
6 student. Wreaths, beautifully made by our Member, Bernie,
were laid at the base of the flagpole. Prayers were said by
Sister Marie, and Bill read the Anzac Requiem and delivered
the Ode. A minute’s silence was observed.
As a group of people, young and old, we were united in paying
our respects to the brave men and women who fought so
gallantly 100 years ago. This was when the Anzac spirit was
stamped into our Australian culture; for this, we will forever
be grateful. We will remember them!
This was an inaugural event for MSWA, and with all the
positive feedback received, we have no doubt it will not be
our last.
A huge thank you must go to our Activities Officer, Giselle,
who was with me all the way as we prepared for our ANZAC
service. I was honoured to be a part of this special event, and
am sure we can make next year’s event even bigger and better.
Thanks to everyone who supported us in their attendance;
the day wouldn’t have worked without you all.
24 Winter 2015 The MS Society of Western Australia The MS Society of Western Australia Winter 2015 25

Sportsperson
of the Year
Rob Cridge’s life was turned upside down when he was
diagnosed with MS in 1995, but that hasn’t stopped him
from living life to the fullest. Last year, Rob competed for
Australia in the International Association for Disabled Sailing
(IFDS) in Halifax and is heading to Melbourne to take part
in the event again this year. In recognition of his sporting
achievements, Rob was recently nominated in the City of
Albany’s Sportsperson of the Year Award with a Disability,
where he took out the win!
Rob said, “I never figured myself as a Sportsperson of the
year, in fact even a sportsperson is a stretch. Once again MS
has provided me with opportunities that I never expected. I am
honoured to have been nominated and to have won. Hopefully
I have in some way inspired others to always put yourself out
there no matter the difficulties.”
Rob, who is a member of the Princess Royal Sailing Club, took
up the sport after a 19 year break. His team mates on their
seven-metre Sonar boat are quadriplegic Jamie Dunross, who
won gold at the Sydney Paralympics, and Frank Guidin from
Katanning, who is missing one of his arms below his elbow.
The trio now sail most Saturdays and have their eyes firmly
set on taking part in the Rio Paralympics in 2020.
World MS Day
World MS Day is a global event which sees MS Societies come together to raise
funds and awareness for people living with MS.
On Wednesday, 27 May, MSWA took over the Perth CBD with a flurry of activities.
Our amazing Volunteers started the day bright and early, shaking tins, while our
roaming mascots caused a stir running around the malls. Lisa Fernandez from
Channel 9 news also made an appearance, interviewing MSWA ambassador
Josh Kennedy, and Shannon Tori, who was recently diagnosed with MS.
The Principal Academy of Dance provided the lunch-time crowd with some
entertainment when a flash mob took over Murray Street Mall! For the first time,
we had Shelley Primary School children on the MS Express, and what fun they
had, sitting on the tram making noise as it drove around the CBD and surrounds!
The fun continued on into the night as Council House and the Bell Tower lit up
in red for World MS Day. It made for a great view from Kings Park, where a light
box installation of #MSWA added to the amazing view and made for a great end
to the day.
A big thank you to all our Members, staff and volunteers, who came out and
made the day an incredible success!
“Our main goal right now is to fundraise, so that we can buy
our own boat, which we can have based in Albany and then
we’ll be able to train every week. Our plan is to train hard, we
want to blow the current Australian team out of the water, so
we make it to Rio,” added Rob.
“We recently competed in the Cockburn Sound Regatta where
we were up against five other teams in the same division as
us. After four days of sailing we finished second, and only
missed out on first spot by one point.”
MSWA CEO, Marcus Stafford, said the sports award couldn’t go
to more deserving person.
He said, “Rob is amazing. Like many people with MS, he’s not
letting it stop him from getting out there, doing what he wants
and having a lot of fun. He is a fantastic ambassador and role
model for not just people with a disability but everyone.
“I’d also like to thank the members of the Albany Multiple
Sclerosis Outreach Group for collecting money and donating
it to Rob to help him achieve his dream of making it to the Rio
Olympics and hopefully come back with a medal.”
Mega Home Lottery
Launching in August 2015, the Grand Prize Winner of the next MS Mega
Home Lottery, will be in the envious position of choosing between a
fully furnished Webb & Brown-Neaves show home in City Beach worth
$1.6 million or $1.35 million in cold hard cash.
Luxury cars, dream holidays and an Early Bird Prize of $500,000 are just
a few of the many prizes on offer. Once again, our Bonus Cash Prize of
$50,000 cash is up for grabs but this time, there won’t be just one Bonus
Prize Winner, but four! Tickets are $100, and you have an incredible 1 in
25 chance to win a prize!
The Grand Prize winner of the last lottery, Leanne Taylor, was thrilled with
her win and chose to take the money and split it with her mother. Thank
you to everyone who supported the MS Mega Home Lottery. Funds raised
go towards funding vital research into the cause and cure for MS, and
providing vital care and support services to people living with MS.
Don’t miss your chance to win big – tickets in the last lottery sold
out in only 10 days – register online at mslottery.com.au to be
notified of when tickets go on sale.
Rotary Team Challenge
The third Rotary Team Challenge took place on Saturday, May 2, and saw
152 participants walk, run or cycle through the picturesque Western
Australian countryside!
Participants started at Northam, Bakers Hill or Chidlow, travelling along the
beautiful Kep Track, before finishing at Swan View. The finish line was abuzz
with participants enjoying the Rapid Relief Team’s free sausage sizzle and
drinks. Massage therapists and podiatrists were also on hand to tend to aching
legs and feet.
It was great to see MSWA staff join in the fun with receptionist, Amelia
Krumholectski and Activities Officer, Andrea Percy completing the challenge with smiles on their faces.
This year’s event raised $73,851 for MSWA, bringing the total amount raised over three years to just over $160,000.
All funds raised from this event will go towards helping people living with MS in Western Australia.
Riding into the night
The inaugural 2015 Beyond Bank Night Ride for MS took
place on Friday, 10 April and was a resounding success!
More than 240 riders participated in the event and thankfully
the rain held off for the night, allowing participants to enjoy
a magical, moonlight ride around the Swan and Canning
Rivers. Participants chose between the 40 and 70km
routes, and thanks to their fundraising efforts, a total of
$28,011 was raised for Western Australians living with MS.
Special thanks go to Beyond Bank for sponsoring this
event. After all the positive feedback we received, we look
forward to seeing even more riders at next year’s event!
26 Winter 2015 The MS Society of Western Australia The MS Society of Western Australia Winter 2015 27

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