MSWA Bulletin Magazine Winter 2017

BULLETIN
THE OFFICIAL MAGAZINE OF MSWA mswa.org.au
WINTER 2017
PROTECT YOURSELF AGAINST THE FLU
THE RESILIENCE FORMULA
NEWLY DIAGNOSED MEET AND GREET
COMING TO GRIPS WITH MS

MSWA’S MAGAZINE FOR PEOPLE LIVING WITH MS
NURSING Our MS nurses are usually the first point of contact after the neurologist’s
diagnosis of MS. We’re committed to providing holistic supports; providing a greater
understanding of what to expect.
Lou Hatter, Manager: 9365 4809 or Community Nurse: 9365 4888
WILSON CENTRE
29 Parkhill Way (08) 9365 4888
Fax (08) 9451 4453
Freecall 1800 287 367
See Health Team Dept contacts on this page
PHYSIOTHERAPY Our team aims to provide treatment interventions to develop and
maintain mobility and function. Our Physiotherapists are experts in movement and function,
and work in partnership with you to attain the highest possible level of independence.
Dave Hathorn, Manager: 9365 4837 or Physiotherapy Department: 9365 4834
MEMBER SERVICES
DIRECTORY
GENERAL MANAGER – MEMBER SERVICES
Sue Shapland: 9365 4840
INDIVIDUAL OPTIONS
Manager Community
Care Programs 9365 4851
NDIS TEAM 1800 287 367
OUTREACH GROUPS
Wilson Outreach (Mon-Thurs): 9365 4830
Beechboro Lodge (Mon, Fri): 9377 7800
Southside Outreach (Fri): 9592 9202
Bunbury Outreach (Wed): 9791 2472
Albany Outreach (Fri): 9841 6657
BUNBURY OFFICE
1 Mason Street, Davenport 6454 2800
BUSSELTON OFFICE
1/21 Cammilleri Street 9754 2320
MARGARET DOODY RESPITE HOUSE
Manager, Chris Rush: 9385 9574
FERN RIVER ACCOMMODATION
Manager, Liz Stewart: 9356 2747
HAMILTON HILL ACCOMMODATION
Manager, Jayne O’Sullivan: 9331 5780
TREENDALE GARDENS RESPITE &
ACCOMMODATION
Manager, Linda Kidd: 9725 9209
CONTACT US
If you would like to comment
on anything you read in this
Bulletin please email
bulletin@mswa.org.au
or write to
MSWA, Locked Bag 2,
Bentley DC WA 6983
The Bulletin can also be viewed at
mswa.org.au/bulletin
EDITORIAL COMMITTEE
Greg Brotherson (Editor), Marcus Stafford (CEO),
David Bugden, Sue Shapland, Ros Harman,
Libby Cassidy, Sandra Wallace, Narelle Taylor,
Leonie Wellington, Sarah Lorrimar, and Dawn Burke.
The Editor welcomes unsolicited submissions.
All articles are subject to a reviewing process.
The views expressed are those of the Authors
and do not necessarily reflect the view of the
Society’s staff, advisors, Directors or officers.
OCCUPATIONAL THERAPY Occupational Therapists enable Members, and Clients,
to continue their work and other interests for as long as possible through advice, aids
and equipment.
Rosemarie Dravnieks, Manager: 9365 4804 or OT Department: 9365 4888
SPEECH PATHOLOGY Our Speech Pathologists provide support by assessing,
diagnosing and creating individualised treatment programs for Members who experience
swallowing and/or communication difficulties. We equip Members with information and
strategies to promote better communication and safe swallowing.
Jamaica Grantis, Speech Pathologist: 6454 3140
COUNSELLING Talking with a Counsellor creates a safe, respectful and confidential
environment for you and those close to you to explore options, create change or
gain understanding about your life. Attending counselling with our tertiary qualified
practitioners enables opportunity for personal growth and exploration in a nonjudgemental
environment. To make an appointment please call:
Lisa Papas, Manager: 9365 4836 or Main Counselling line: 9365 4811
SOCIAL WELFARE Social Welfare Officers assist people living with MS and their
families to access services and supports to remain living independently at home.
They specialise in case management, advocacy and sourcing funding options.
They provide information on benefits and entitlements through Centrelink and other
government departments.
Irene Gallagher, Senior Social Welfare Officer: 9365 4835
INDIVIDUAL OPTIONS We provide long-term and time limited in-home supports
including assistance with personal care for people with MS, to help them remain in their
homes. Care and supports are provided through a combination of funding from the
Disability Services Commission (DSC) and our own fundraising efforts. We manage both
DSC and NDIS individually funded care packages.
Contact us on 9365 4851 for more information.
THE NDIS TEAM We provide a convenient and fast one stop shop to enable you to
easily transition to the NDIS as it becomes available in your area. We help you determine
whether you are eligible for assistance under the NDIS; we guide you through the
application process and then we help you develop a comprehensive NDIS plan to
maximize your entitlements. We support people with all neurological conditions.
Mark Douglas, NDIS Operations Manager: 9365 4824
CAMPS & RECREATION MSWA provides separate recreation camps for Members,
carers, and families, primarily funded by Lotterywest, and for a nominal cost to participants.
These camps provide a break from daily routines, and strengthen friendships and
support networks.
Coordinator for Camps & Recreation: 9365 4843
2 | MSWA BULLETIN WINTER 2017

Letter from the MSWA President
GEORGE PAMPACOS
It is with great sadness I advise that after 15 years as CEO,
Marcus Stafford has decided to resign from MSWA.
Although this may come as a surprise to many, to ensure
preparedness and continuity, Marcus flagged his plans to the
Board and members of management some time ago.
In the time that Marcus has been at the management helm,
MSWA has gone from strength to strength. This year MSWA
will post record revenues, record levels of Member and
Client services and a record contribution to research. Our
foundations for a successful future have never been stronger.
Marcus also spearheaded the rescue and turnaround of the
MS Society of South Australia and the Northern Territory.
Although incredibly sorry to see Marcus go, I respect and
understand his wish to pursue some of his other career
interests, including management consulting, public speaking
and Board directorships. I am confident his experience and
leadership will allow him to make a broader, positive difference
to Western Australia’s business and social community.
It is critical MSWA doesn’t lose momentum and Marcus has
confirmed that he will remain as CEO until his successor
is appointed and an appropriate handover period has
taken place. Timings are always difficult to forecast with
senior roles, but it is likely Marcus will continue as CEO for
most, if not all of 2017, so there will be plenty of time for a
proper farewell.
Regards,
George Pampacos
MSWA President
Inside | Winter 2017
Letter from the MSWA President 3
Letter from the Editor 4
From the desk of the CEO 5
A message from the General Manager
– Member Services 6
Marcus honoured with Order of Australia 7
Our Core Values 7
Round-up of research and other items of interest 8-9
The NDIS continues to benefit more people in WA 10
An overview of the Annual Member Survey – 2016 11
Did you know that MS may affect your
thinking and memory? 12
The resilience formula 13
It’s worth the effort 14-15
Newly Diagnosed Meet and Greet 15
Occupational therapy in persistent pain care 16
Protect yourself against the flu 17
That’s Life with Narelle 18
Meet Ms Carer 19
The present 19
Auld Acquaintance, Not Forgot 20
Mindfulness Meditation 21
MSWA Volunteering News 22-23
Coming to grips with MS 24
South West regional round up 25
Albany Outreach News 26
Wilson Outreach news 26
Geraldton Trip 27
Northam morning tea 27
MSWA BULLETIN WINTER 2017 | 3

Letter from the Editor
DR GREG BROTHERSON
Welcome to the winter edition of your Bulletin and greetings
from MSWA’s Treendale Gardens Respite in Bunbury where
I’m currently a guest while my wife takes a well-earned
break. I must say that the country looks dry and hopefully by
the time this Bulletin reaches you the rain will have arrived
and seeding will be underway. When asked about the need for
rain one farmer told me, “We are a hopeful, hardy lot.” Now
that’s something people with multiple sclerosis (MS) know all
about - hope for the future.
You will have read the letter from the President of MSWA,
George Pampacos, notifying you of the resignation of MSWA’s
CEO Marcus Stafford, after 15 years at the helm. I must say
the news left me rather drained as it did with many other
people I’ve spoken with. Fifteen years is a long time to be
associated with such a pleasant, talented person with a
seemingly endless appetite for work. People with MS have
much to thank him for, and of course it is only natural that
such a popular person who left his mark wherever he went
will be missed by each and every one of us.
In this issue of your Bulletin, Sue Shapland provides us with
some insight as to what it has been like to be a senior manager
and member of Marcus’ management team. Sue also talks
about the roll out of the National Disability Insurance Scheme
(NDIS), with all its benefits and challenges. Of particular
interest to the 676 Members who are 65 years of age and
older is that the aged care sector will have their revamped
model commencing this year.
Looking into the future, Nigel Carey, NDIS Business Manager,
tells us about all the benefits the NDIS is bringing to the lives
of people with MS and other neurological conditions who are
Members and Clients of MSWA. Nigel discusses the rollout
of the scheme and how you can get in touch with the MSWA
NDIS team. These experts are always available to advise you
on the benefits you are entitled to and to help you develop
plans which maximise the services you can receive.
Sue Shapland brings you the latest research round-up and
the exciting news that Ocrelizumab (Ocrevus), the first drug
to show some promise for people with progressive MS, has
received FDA approval in the U.S. We hope that approval of
the drug will follow quickly here in Australia and be made
available on the PBS.
Counsellor Simon Rolph offers three solutions to any
problematic situation no matter what it is. This is called the
resilience formula. Sarah Lorrimar, Peer Support and Health
Education Coordinator, tells us about mindfulness meditation
to help clear our minds and become more aware of ourselves
and our environment.
In combination with mindfulness, Ian Cheok, MSWA
Occupational Therapist (OT), discusses how OT’s can help
people cope with and manage their pain. An OT may be able
to help you navigate the system and find the right resource
to help you.
Sue Shapland also brings you an overview of the results of the
recent Member Survey. A big thank you also goes out to the
783 Members who took the time to complete this survey. This
is a significant contribution, and a great help in the planning
of future services to the Membership. Your suggestions are
also appreciated.
Dawn Burke gives us the latest on volunteering focussing on
National Volunteers Week and a delicious luncheon that was
organised for our volunteers. This luncheon is MSWA’s way of
acknowledging the efforts of our volunteers and the time they
give to us, and to let them know how appreciated and valued
they all are to all Members and MSWA staff.
You will find our usual look at MS from different perspectives
by Ros, Narelle and Dr Ong. We also have two biographical
stories from Members, which are always welcome, and
something really special and rather different from the
perspective of a carer.
Finally, there is some Outreach news, where you are
always welcome. Stay warm, safe and from the team of
writers who bring you this issue of your Bulletin, we look
forward to you enjoying what we have for you.
4 | MSWA BULLETIN WINTER 2017

From the desk of the CEO
MARCUS STAFFORD
I remember it like it was yesterday ... but it wasn’t! It was, in
fact, a little over 15 years ago that I sat down to write my very
first article for the Bulletin.
For a range of reasons, I found it tricky to write. To start with,
I knew nothing! But I was aware that many were looking at
their new CEO with a degree of expectation. The Board has
hired this guy; let’s see what he has to say.
The Multiple Sclerosis Society of Western Australia, as it
was known then, had a rich and worthy history. It was a
fine organisation, full of fine people. My job was to take us
forward. Trouble was that I didn’t know where!
My first article talked of exciting futures and a commitment
to people with MS. As I write this Bulletin article, cognisant of
the fact that it will be one of my last, those words ring as true
today as they did then.
After 15 years of leading this organisation, it is time for me to
do some other things in my career. It is time for me to pass
the baton to some lucky soul who will have that same feeling
of honour that I have experienced. Without knowing who that
person will be, I can only wish them every success and hope
that they will enjoy the journey as much as I have.
It has been a real pleasure, brimming with immense pride
and satisfaction to watch our organisation grow year on year
to the leader it is today. We always came from a good place,
which makes the CEO’s job so much easier. ‘Back then’, I
would look at our $5 million in revenue and 170 staff and
dream about where I hoped we could be. It’s a good feeling to
hang up my MSWA spurs, on a record breaking year, with an
annual revenue of over $50 million and 700 staff. 700 staff
who are doing amazing work to help people with MS and
other neurological conditions. We’ve never been stronger and
our future will be both safe and sparkling.
Gracious CEO’s talk about ‘the great team effort’ because
they’ve read in the CEO handbook that is the thing to do! Some
mean it; some don’t! I really mean it. And I mean - really!
In my time, I have been privileged to work with a Board of
Directors that has shown the wisdom of knowing when to go
conservative and when to support a more ambitious stance.
A Board that has represented all stakeholders and people at
all stages of MS.
I have worked with the very best senior managers who have
deployed commercial acumen, whilst never forgetting the
people who we are here to serve. How lucky am I to have
worked with them for just about all my 15 years? I applaud
their loyalty!
Long after I have become a distant memory of ‘that bloke who
used to work here’, the broader team of Board, management,
staff, Members and volunteers will continue to write us into
the record books. I am totally confident that, until the cure
is found, that broader team effort will lead to the ongoing
improvement in the lives of people with MS and other
neurological conditions.
In many respects, this Bulletin article is somewhat premature!
I’m going on to do things like management consulting, key
note speaking and will be sitting on a couple of Boards, so
there is no deadline attached to my resignation. I just feel that
it’s the right time. In fact, to ensure that MSWA’s momentum
isn’t lost, I’ll be your CEO until the budget year is formally
closed out, my successor is found and we have worked
through the handover process. That will be most, if not all of
2017. Plenty of time to say proper goodbyes.
When I sat down to write that first Bulletin article, all
those years ago, my wildest dreams never imagined over
15 satisfying years working in the best organisation in
Western Australia. Neither did I expect to be the author
of 60 articles in the Bulletin!
Thank you for having me!
Do you want to receive the Bulletin online?
Want monthly information updates?
Register your email address today to start receiving our
monthly Vitality e-newsletter and the Bulletin magazine online.
Just email donna.hill@mswa.org.au or call 9365 4869
and let us know your current email address.
MSWA BULLETIN WINTER 2017 | 5

A message from the General Manager –
Member Services
SUE SHAPLAND RN, BN
“When you can’t change the direction of the wind – adjust your sails,”
H. Jackson Brown, Jr.
I think this quote has relevance in many ways. People
living with MS I am sure can relate to having to make some
adjustments of their sails throughout their individual journey;
some people probably more times than others.
As you are aware, the winds of change continue to blow
across the disability sector, with the roll out of the National
Disability Insurance Scheme (NDIS) with all its benefits and
challenges, and with the aged care sector commencing their
revamped model this year.
The NDIS in WA continues to roll out, although we are still
unclear on the new Government’s review of the previous
decision. Whilst increasingly we hear of challenges and issues
with the NDIS in the Eastern States mainly due to the sheer
volume and timeframes involved.
Then of course there are the internal MSWA changes that
have been recently announced which include the imminent
retirement of Dave Bugden, General Manager of Brand,
Marketing and Sales, and the resignation of Marcus, our
CEO. These departures are huge for most of us at MSWA –
Members, staff and volunteers included – as both have played
pivotal roles in steering MSWA into the successful position we
proudly hold today.
For over 15 years now, Dave Bugden has been vital to our
success in fundraising and raising our brand awareness.
The Funds raised have allowed Member Services to continue
to grow programs, staffing and build numerous facilities
including Treendale Gardens, Hamilton Hill and the Bunbury
Community and Health Services Hub. I would personally like
to thank Dave for his hard work and untiring support of all
things MSWA; enjoy your well-earned retirement!
As for Marcus, where do I start? I was very fortunate to
be recruited by Marcus in 2003 and feel privileged to have
worked with him, and our Senior Management team, over the
past 14 and a half years. MSWA today is almost a world away
from when we started thanks to his commitment, business
acumen, dedication and vision. Our success, and the very
solid position in which he will leave us, has been as a result of
hard work and innovation, the support of an excellent Board
and our greatest asset – our staff and volunteers! We will all
miss Marcus but thank him for his undying commitment over
the past 15 years and wish him well on his future endeavours.
We have recently had another MS treatment approved under
the PBS, Zinbryta, and eagerly await approval for Ocrelizumab
which is also the first product to have also shown promise for
people with progressive MS.
There are several positive changes imminent with our
proposed re-location of the Wangara office to a larger, more
suitable premises in Joondalup. We will also be seeking new
premises in Armadale, Mandurah and Busselton to be more
accessible for Members and NDIS Clients in those areas. Our
Butler services hub and high support accommodation complex
will also commence construction later this year. MSWA is
very fortunate to be able to fund such expansions and bring
services closer to home for our Members and Clients.
Once again, we will be allocating a record amount of funds
to MS Research this year. We will bring you updates on the
allocation of the funds and outcomes from research already
funded by MSWA.
The Member Services team continues to grow and add new
programs and MS resources for our Members. For example,
we now have massage in several new regional areas including
Geraldton, Northam, Manjimup and Margaret River.
Our annual MS Awareness Week Members’ Forum was
held on June 2 this year and I’ll provide an overview of the
presentations in our next Bulletin.
Please don’t forget our Member Services team is here
to help you. Whether it’s for information on the latest
treatments or lifestyle advice, research updates or
a service you require please don’t hesitate to make
contact. We are a phone call away and can be reached on
08 9365 4888 or email us at get-in-touch@mswa.org.au
Want to access research articles?
Here are the places you can access up to date research
articles relating to multiple sclerosis:
• Vitality – Our monthly research focussed e-newsletter
• Our website – https://mswa.org.au/news/latest-news
• Right here as part of your Member magazine Bulletin.
It includes great research articles and information every quarter.
Just email communications@mswa.org.au if you would like any further information.
6 | MSWA BULLETIN WINTER 2017

Marcus honoured with Order of Australia
It was incredible to learn of our very own CEO, Marcus
Stafford, being honoured with a Member of the Order of
Australia in the General Division last month.
In recognition of his significant services to people with a
disability, and to community health, through support for those
affected by multiple sclerosis, Mr Stafford has been awarded
a Member of the Order of Australia in the General Division.
Marcus started in his role as our leader over 15 years ago, and
since then has turned MSWA into one of the most successful
not-for-profit organisations in Western Australia.
Our President, George Pampacos had this to say on learning
of the Award, “Due to his amazing work Marcus has improved
the lives of people living with MS and other neurological
conditions not only in WA but nationwide. He has always had
a long-term vision about where he wanted MSWA to be and
most importantly how it could be achieved. He is a natural
leader who has been able to rally and inspire the team at
MSWA to achieve incredible things. There’s no doubt the
organisation is as successful as it is because of his guidance.”
Jayne O’Sullivan, the manager
of MSWA’s Hamilton Hill high
support accommodation facility
said Marcus’s management style,
compassion and drive filtered
throughout the organisation.
“Most of us base the way we work
on what we see. The culture of
MSWA is formed from what we see
at the top. Care, compassion and hard work. We just want to
do what’s best for our Members to make their lives better and
that comes from Marcus,” said Jayne.
“I’ve been at MSWA for 20 years and the organisation has
come along in leaps and bounds since Marcus became
CEO. In terms of the services being offered and funding for
research, it just gets bigger and better every year.”
Marcus, from everyone at MSWA we congratulate you on
this very richly deserved recognition.
In everything we do at MSWA, our Staff, Volunteers
and Board proudly demonstrate our Core Values.
OUR CORE VALUES
We are proud to be part of MSWA.
As a team, these are the values we strive for.
PROFESSIONALISM
We commit to fostering an environment
of professionalism and excellence by:
• Encouraging innovation
• Supporting continuous improvement
and professional development
• Setting the highest standards
in all that we do
SERVICE
We commit to providing the
best possible service by:
• Acting in a responsive and timely manner
• Understanding, enabling and empowering others
• Promoting awareness and shared
knowledge, both internally and externally
TEAMWORK
We commit to working
together as a team by:
• Encouraging a unified
approach to our shared goal
• Communicating openly and honestly
• Recognising the value of
each other’s contribution
RESPECT
We commit to respecting
and valuing one another by:
• Encouraging and empowering each
other to reach our full potential
• Always maintaining our integrity and ethics
• Honouring our commitments and promises
MSWA BULLETIN WINTER 2017 | 7

ROUND-UP OF RESEARCH
AND OTHER ITEMS OF INTEREST
SUE SHAPLAND RN, BN
From the UK MS Trust site:
Tracking daily fatigue fluctuations in multiple sclerosis:
ecological momentary assessment provides unique insights
Powell DJ 1,2 , Liossi C 3 , Schlotz W 3,4 , Moss-Morris R 3,5 .
Studies investigating the prevalence, cause, and consequence
of MS related fatigue use single measures that imply
symptom-stability over time; not gaining information about if,
when, and why severity fluctuates.
This study sought to examine the extent of moment-to-moment
and day-to-day variability in fatigue in relapsing-remitting
MS (RRMS) and healthy individuals, and identify daily life
determinants of fluctuations.
Seventy six participants (38 RRMS and 38 controls) provided
real-time self-reports six times daily. 1,661 reports were
analysed measuring fatigue severity, stressors, mood, and
physical exertion, and daily self-reports of sleep quality. Fatigue
fluctuations were evident in both groups; however, fatigue was
highest in RRMS, typically peaking in late-afternoon.
Many of the factors in daily life that influence fatigue were
similar for both people with and without MS, but physical
activity seemed to have a greater effect on people with
MS, and a poor night’s sleep had a greater effect on people
without MS.
The researchers concluded that a better understanding of
the changing levels of fatigue experienced by each person
provides opportunities to develop personalised strategies for
managing fatigue.
When can you safely stop taking disease modifying drugs?
There is very little evidence to suggest
who can safely stop taking disease
modifying drugs (DMDs). An American
study has compared the experiences
of people who stopped taking DMDs -
those advised to stop and those who
chose to stop.
The first group consisted of 77 people with secondary
progressive MS with no clinical or MRI signs of MS activity for
at least two years. They had been advised to stop treatment
(advised group). The second group consisted of 17 people
with RRMS who chose to stop taking their treatment (chose
group). People in both groups were assessed at the time of
stopping DMDs and monitored for recurrence of MS activity
(relapse or MRI lesions) for at least one year after.
Twelve per cent of those in the advised to stop group and
59% of those in chose to stop group had recurrence of MS
activity, within two years of stopping treatment.
The investigator reported that it may be safe to stop DMDs
in older people (70 years or older) who have been free of
MS activity for at least two years, although monitoring for
recurrence of MS activity is warranted.
However, younger people with relapsing-remitting MS
choosing to stop their DMD have a 60% likelihood of further
MS activity, underlining the importance of continuing with
treatment for this group.
Promising results from long term studies of stem cell transplants
Two recently published studies reported data on levels of
disability in people with MS five years after receiving stem
cell transplants.
In one study, researchers sought data from 25 centres which
had used a range of stem cell treatment methods to treat
people with either relapsing or progressive MS between
January 1995 and December 2006. They reported that five
years after treatment, just under half of the 281 people for
whom data was available had not experienced an increase in
their disability.
A second study reported long-term results of stem cell therapy
in 24 people with highly active RRMS. After five years, about
two thirds continued to show no relapses, no progression and
no new lesions.
Both studies acknowledged that to fully assess the risks
and benefits of stem cell treatments and understand where
they fit into current MS treatment options, we really need
evidence from controlled, randomised clinical trials directly
comparing stem cell treatments against other treatments in
both relapsing-remitting and progressive MS.
Read more at:
mswa.org.au/researchupdate
8 | MSWA BULLETIN WINTER 2017

From the International Progressive MS Alliance site:
Ocrelizumab (Ocrevus)
The first disease modifying therapy for primary progressive
MS, Ocrelizumab, has received FDA approval in the U.S.
Prof. Alan Thompson, Chair of the Alliance’s Scientific
Steering Committee and Dean of University College London
Faculty of Brain Sciences said, “One cannot underestimate the
importance and impact of the very first treatment for primary
progressive MS. This is the crucial first step in finding ever
more effective treatments for everyone with progressive MS.”
From the newly revamped MS Research Australia (MSRA) site:
Re-purposing for progressive MS - a new trial on Simvastatin
A large-scale phase 3 trial will soon begin in the UK. The trial
will investigate whether the commonly used and inexpensive
cholesterol-lowering drug Simvastatin, could potentially
become a treatment for Secondary Progressive MS. This is
a global collaboration costing more than A$10.4 million, with
over 1,000 people with MS around the world involved.
Can cognitive therapy treat depression?
People with MS are more likely to suffer from depression than
the general community, especially when newly diagnosed. Whilst
there are a number of psychological treatments available, only a
few are designed specifically for depression in people with MS.
Researchers at the University of Melbourne are conducting
a trial directly comparing two different therapies, a cognitive
behavioural therapy, which is a talk therapy that helps
individuals learn skills about thinking and behaviour, and a
supportive listening therapy, which is another type of talk
therapy that involves talking about your problems.
The community knowledge gap about MS
People with MS commonly report that the general public don’t
understand their disease. A recent survey of 1,000 people,
commissioned by MSRA has shown that:
• Whilst approximately 7.3 million Australians know someone
with MS, only half of all Australians actually know what MS is.
• Four in ten of those knowing someone with MS were unable
to describe what the disease is.
• More than 50% didn’t realise MS is predominantly diagnosed
in young adults (average age of diagnosis being 30)
• They weren’t aware that MS largely affects women.
• They have the perception that all people affected by MS
could not remain employed.
These results reaffirm what the MS community already
knows; greater awareness is desperately needed.
From the National MS Society
Study finds links between risk of MS in
children and low vitamin D and obesity
New research, partly funded by the
National MS Society, found that being
overweight and having low blood
levels of vitamin D increased the risk
for children to develop pediatric onset MS.
The study examined blood samples from 569 non-Hispanic
whites with MS from pediatric MS centers around the U.S. and
Sweden, and matched them with 16,251 people without MS.
The report states that approximately 5% of people with MS
experience symptoms before the age of 18. Whilst there is
strong evidence of the relationship between low vitamin D
levels and increased risk of adult MS, few studies have looked
at whether this applies in pediatric MS.
Scientists from several institutions used genetic risk scores
(GRS), based on DNA information, to confirm these links.
These results add to the growing evidence of genetic and
environmental factors in the risk of developing pediatriconset
MS. Knowing that both low vitamin D levels and obesity
are risk factors has potential implications for preventing MS
in children and adults.
From News Medical Life Science’s web site:
Skimpy sleep followed by ‘catch
up’ tied to worse cognition in
young adults
Baylor University researchers
have found that skimping on
sleep, followed by ‘catch-up’
days with long snoozes, is
linked to worse cognition – both
in attention and creativity – in
young adults, particularly, those tackling major projects.
The study, involving interior design students, also challenges
a common myth that “the best design ideas only come in
the middle of the night”, as researchers found the opposite.
“Consistent habits are at least as important as total length of
sleep,” study co-author Michael Scullin, Ph.D said.
The National Sleep Foundation recommends that young adults
have seven to nine hours of sleep each day.
MSWA BULLETIN WINTER 2017 | 9

THE NDIS CONTINUES TO
BENEFIT MORE PEOPLE IN WA
NIGEL CAREY, NDIS BUSINESS MANAGER
The NDIS continues to grow rapidly and attract new
participants across all of the WA trial site areas.
The full list of the trial sites is as follows:
• Lower South West
• Cockburn and Kwinana
• Armadale, Serpentine - Jarrahdale and Murray
• City of Swan, Kalamunda and Mundaring
• Bayswater, Bassendean, Toodyay, Chittering, Northam
and York
These sites were joined on July 1 by the new WA NDIS areas of
Mandurah and Rockingham. We will be contacting all MSWA
Members, living in these two areas, to discuss the benefits of
the scheme and guide them through the application process
if they are interested.
In the interim, do contact our friendly NDIS team at MSWA if
you have any immediate questions about the NDIS, eligibility
or what it can offer. This is particularly relevant if you are
nearing the age of 65 as this is the ‘cut off age’ for you to be
eligible to enrol.
We are also holding a series of NDIS information sessions,
which started in June, in both Mandurah and Rockingham.
Details on upcoming information sessions can be found on
our website – mswa.org.au
It should be noted that there will be no further expansion of
the NDIS in 2017 after Mandurah and Rockingham. The next
trial sites will commence in July 2018 in the following areas:
• Fremantle, Melville, South Perth
• Goldfields Esperance
• Joondalup, Wanneroo
We are often asked to provide actual examples of how the
NDIS can help you.
The following examples illustrate how comprehensive the
NDIS can be in helping people to more fully participate in
everyday life.
1) Maintaining your independence in the home
The NDIS funding actively supports people to continue to live
in their own homes.
Did you know MSWA provides a wide range of personal care
services such as helping with dressing and taking a shower?
We also help with preparing meals, shopping and cleaning
homes. MSWA also ensures Clients remain safe and mobile
by installing ramps and rails throughout the house all of which
can be funded through your plan.
2) Keeping in touch with your family and community
We have Members and Clients who may feel rather isolated
and wish to participate more fully in the community. The NDIS
helps fund transport to and from community events, children’s
sporting events and social occasions. The NDIS also provides
physiotherapy to increase mobility and counselling and
speech therapy to increase social confidence.
3) Maintaining employment
The NDIS supports people who want to remain in employment
once they have been diagnosed with a neurological condition.
For example, you may run your own business but fatigue
issues may be affecting your ability to effectively manage
both your work and home life. The NDIS can provide funding
that will allow you to manage your fatigue and cognitive
issues, including occupational therapy assessments of your
work place and transport to work on days you can’t drive.
Our MSWA NDIS team is always available to advise you
on the benefits you are entitled to and to help you develop
plans which maximise the services you can receive. Our
key objective is to deliver a very smooth and easy customer
journey for our Members and Clients.
To this end we have recently added a new Client Relationship
Coordinator, Annabel Vasquez, to our team to further enhance
our customer service.
Please contact any of the following MSWA NDIS team
members for more information on the NDIS:
Christine Richards: Client Relationship Coordinator
Email:
christine.richards@mswa.org.au
Phone: 9365 4867
Pranjal Pawar: Client Relationship Coordinator
Email:
pranjal.pawar@mswa.org.au
Phone: 9365 4810
Annabel Vasquez: Client Relationship Coordinator
Email:
annabel.vasquez@mswa.org.au
Phone: 9365 4806
Finally, your chance to win a $100 shopping voucher!
All you need to do is answer the following three questions:
• Which two new NDIS areas started on July 1?
• Name three services that MSWA provides under the NDIS.
• Name one of the people you can contact at MSWA to learn
more about the NDIS.
Email your answers to nigel.carey@mswa.org.au now
with ‘Bulletin Quiz’ in the subject header.
However, be quick! Only the first three correct responses
will win a $100 shopping voucher!
10 | MSWA BULLETIN WINTER 2017

AN OVERVIEW OF THE ANNUAL
MEMBER SURVEY – 2016
SUE SHAPLAND RN, BN
Firstly, I would sincerely like to thank the 783 Members
who responded to our annual survey! This survey is an
important feedback mechanism for determining satisfaction
levels and unmet needs, whilst also providing an insight into
demographics such as age and location.
Survey Responses by Age Group
800
600
400
393
624
How much does your MS affect you?
612
215
523
225
172 196
173 153
200
97
3 30 34
47
0
18-24 25-34 35-44 45-54 55-64 65-74 75Yrs
+
2016 responses by age Ages of Members on MSWIMS
• 80% of respondents were female and 20% male
• 73% live in the metro area
• 95% told us they read the Bulletin!
30%
32%
9%
30%
Not at all
A little
More than a little,
but not a lot
A lot
Do you currently use any mobility aids?
44% responded yes 56% responded no
Are you always treated with care and respect
when you contact MSWA staff?
99.55% responded yes 0.45% responded no
Overall how would you rate our services? 727 responses
97.4% said satisfied or very satisfied
2.6% said dissatisfied or very dissatisfied
Do you know about the NDIS? 738 responded
76.4% responded yes 24% responded no
How likely are you to recommend MSWA as a service
provider to others?
Likely / very likely 96.6%
Unlikely / very unlikely 3.4%
Whilst we received some great feedback and congratulations
on our services, we also received many useful comments
regarding gaps in services and also letting us know that
we don’t always get it right. This helps us to reflect and
encourages us to always strive for improvement.
Top 10 reported MS symptoms/problems experienced.
Fatigue 82% 605
Heat intolerance 72% 537
Balance 67% 497
Weak legs 58% 427
Muscle weakness 56% 415
Numbness 46% 343
Pins and needles 44% 326
Incontinence; bladder/bowel 43% 316
Muscle spasms 42% 308
Muscle stiffness 42% 308
Some comments from Members
“A comforting and helpful environment that is a pleasure to
be part of.”
“Fortunately, I can manage my symptoms at present so do
not require assistance. Very satisfied with support that is
available should I need it.”
“For me MSWA plays an important role in my life by giving
me peace of mind in knowing work is being done to find
a cure for MS, and that if my condition progresses in the
meantime I will have support services at the ready.”
“I am happy to know that if the time comes, the service is
available when I will be in need. Thank you.”
“For Members in full time employment, it would be useful
to have more seminars/services available outside working
hours. This would truly support people with MS who are
working. Thanks for all the services and support.”
“I am happy with what you provide. I am not as bad as a
lot of people. If and when I get worse I will call on your
assistance. Thank you.”
“I find there is little to no support outside the Metro areas.
Also having very mild/little disability there will be even less
under NDIS.”
“I used to live down South where there wasn’t support, now
after moving to Rockingham I’ve got all the support I need.”
MSWA BULLETIN WINTER 2017 | 11

DID YOU KNOW THAT MS
MAY AFFECT YOUR
THINKING AND MEMORY?
MSWA OTs with the postcards.
Some people living with MS may experience some form
of change in their cognitive function. However generally
these changes are often mild and can be referred to as a
hidden symptom.
Only a small percentage of people with MS will experience
a significant impact on their thinking abilities. Maintaining a
healthy lifestyle, accessing support and adopting practical
strategies can help to manage these changes.
Common symptoms of cognitive changes include being easily
distracted, taking longer to respond to a question, forgetting
names or planned tasks, difficulty following a conversation,
difficulty multi-tasking and being unable to think quickly.
Some cognitive changes are temporary whilst others may be
more permanent.
It is important to identify any changes to your cognition
when the issue arises and to seek the appropriate support to
manage these changes. MS experienced health professionals
such as neurologists, MS nurses and MSWA Occupational
Therapists can provide advice and practical information to
help reduce the impact of changes to your cognition.
The following strategies can be undertaken by you, and your
friends and family, to help with everyday tasks!
For the person with MS
• Be organised, have a place for everything.
• Use a note book, or your smart phone, to write lists.
• Have a calendar for you and your family.
• Let your support people know about your thinking changes
or challenges.
• Use alarms on your smart phone when cooking or for your
medication prompts.
For friends and family
• Discuss one topic at a time.
• Allow time for the person to respond.
• Make sure you have their attention.
• Put things back where they belong.
• Add your appointments to the family calendar.
It’s not just brain lesions that can cause cognitive changes.
Lack of sleep, fatigue, stress and some medications, for
example, can all impact on thinking.
Developing a healthy lifestyle which incorporates the following
brain health tips can be helpful:
Get regular sleep
Sleep helps restore the brain by flushing out toxins that build
up during waking hours. Sleep is also helpful for storing our
memories. A good goal is to aim for seven to eight hours sleep
per night.
Keep active
Whatever is good for your heart is good for your brain! Physical
activity increases blood flow to the brain which helps with
growth of brain cells.
Challenge your brain
Your brain is a muscle, it needs exercise too! Challenging
the brain helps strengthen and build new brain cells. Learn
something new every day, pick up a book, take up a hobby or
research something you’re interested in.
Rest and relax
Fatigue can affect the way we think. When we are more alert,
we are more able to manage our day to day lives. Regular rest
and relaxation can help you achieve a clearer mind.
Socialise
Social activities that involve mental and physical stimulation,
like singing or team sports, benefit our brain health. Catch
up with family or friends, or get to know your neighbours to
stimulate your brain!
Eat well
A balanced diet helps our brains function properly. Enjoy a
variety of foods and cut back on saturated fats. Follow the
Australian Dietary Guidelines or liaise with your GP or dietitian.
MSWA has developed a series of postcards which feature
information on cognition and brain health. If you would
like a copy or for any other queries, please contact the
MSWA Occupational Therapy or MSWA Nursing team
on 9365 4888.
References: MS Australia
12 | MSWA BULLETIN WINTER 2017

THE RESILIENCE
FORMULA
SIMON ROLPH, MSWA COUNSELLOR
When people come to counselling, a common request I hear
is, “Just tell me, what should I do?” Counsellors cannot
directly answer this question. Lives are complex, we are all
unique individuals and it is impossible to offer a one size fits
all solution to everyone. Counselling is not a mathematical
formula; people are not numbers.
Having said that, there is one formula that I regularly use
with the people I work with, that offers three solutions to any
problematic situation no matter what it is. It’s called - the
resilience formula.
Option One – Leave
Whenever we are in a problematic situation, the first option
is to leave.
For example:
• If in an unhappy relationship, leave the relationship.
• If in an unsatisfying job, find a different job.
• If living in an area with undesirable employment/social/
weather options, move to a more desirable area.
There is no guarantee that the consequence of leaving will be
an improvement, but based on the information available, you
need to decide if there is a greater chance of improving your
life if you do leave. However, leaving isn’t always an option.
There are times when the reality of our situation prevents
us from leaving. This might be due to financial reasons,
emotional reasons or even physical restrictions. If leaving is
not possible there are still two more options available.
Option Two – Stay and change what can be changed.
Accept what can’t be changed. Live by our values.
If we can’t leave, we stay. But staying in a problematic situation
doesn’t mean we passively accept the situation. We identify
what we have control over and try and influence change to
improve our lives as much as possible. Even if changes are
small, they can still lead us towards a more purposeful and
fulfilling life.
There will always be aspects of our lives that we cannot
change. Other people, the weather, a chronic diagnosis such
as multiple sclerosis. As much as we want other people to
be different, as much as we wish the weather to be hotter/
colder/wetter/dryer (select personal preference), as much as
we wish we didn’t have to live with a chronic diagnosis, some
things are unchangeable. So, we accept certain realities, offer
ourselves compassion in the face of these painful realities,
continue to change what can be changed and be guided by
our values to live a meaningful and vital life.
Option Three – Stay, give up and do things that make
life worse.
We have all done option three. We have all stayed in a
relationship too long, a job too long, lost any hope for change
and made the situation worse through our own behaviour.
Whilst many of us do not actively chose option three (some
do), through a sense of hopelessness we can all give up at
times and fall into self-defeating patterns of behaviour that
contribute to our own suffering.
If we are aware of these options, this knowledge prevents
us from passively falling into option three. We can still
actively choose option three but it then becomes a choice
with the opportunity to also choose alternative options. Whilst
counselling cannot offer precise one size fits all solutions,
it can raise awareness and with it choice of options and
actions available.
The World Health Organisation have, with the aid of Russ
Harris, introduced the resilience formula to refugee camps
throughout the world. For many people living in such camps,
the option of leaving is just not possible, but options two
or three are still available. People can be trapped in the
most awful conditions sometimes for their entire lives. It
is still possible though to initiate positive change, accept
what cannot be changed and live by values of how to treat
others, how to treat ourselves and live as meaningful a life
as possible despite all the restrictions faced and the painful
realities of day to day life. The alternative is option three. This
is the choice we all have.
If you would like to discuss any of the topics found
in this article with a counsellor, you can contact
the MSWA Counselling team on 9365 4811 to organise
an appointment.
Further reading: The Reality Slap by Russ Harris
MSWA BULLETIN WINTER 2017 | 13

IT’S WORTH
THE EFFORT
JENNIFER FOWLER
For 23 years I was a primary school teacher, dedicated and
devoted to my career. I loved my children and a significant
number of them remain in contact with me to this day which
indicates that many of them also loved me.
I contracted polio early in my childhood years and have lived
with disability in various forms for most of my life but largely
thanks to the support of my mother, I was able to do almost
everything I set out to do including teacher training. Being
different can sometimes be a challenge in itself, but we are
all different in some way - that’s what makes us individual,
interesting and loveable.
During 1989 and 1990 I began to experience fatigue in a new
kind of way. Believing it to be part of post-polio syndrome,
I fought against it with all the reserve I had. My emotional
well-being was a little shaky and I put that down to the fact
that my precious mother had died of cancer in 1988 at age
65. Coping with that was not my strong point. Then, at the
end of March in 1991, I had a cold. Simple enough really but
because I thought it might get worse and cause me to have
to take days off from school, I took myself off to my GP for a
quick fix. While I was with the GP I said to her that the vision
in my left eye was a bit fuzzy and asked her to check it out.
She peered into it, as they do, frowned, as they do, and said
she wanted me to see a specialist - that day. She made the
appointment. My sister took me to see Dr Tim Day.
I was admitted to hospital that day and went through numerous
tests. At the end of the week I had an MRI scan. Dr Day (how I
miss him) came to my room (on April Fool’s day!) at St John’s,
sat on my bed and told me the results of all the tests pointed
in one direction and that was that I had multiple sclerosis. I
didn’t know much about MS and treated his diagnosis with
some flippancy wanting to know when I would get better and
when could I go back to school.
I had some serious learning to do. By this time I had no vision
at all in my left eye and fatigue was a major problem. I had
begun to spasm at the most inconvenient times and I lost
control of my waterworks. Emotionally, I was a wreck.
At home I lived alone in the house of my dreams in the hills
on the east side of Perth. I had all that I needed and was
very happy. But my house was up on stumps and not at all
wheelchair friendly. Guess what I had to do first. Yes, I sold my
house in favour of a flat one down in the flats. I persevered in
my teaching but in a tandem arrangement in which I worked
four days and my partner worked one day. Then, my full time
teaching days were over.
Depression set in big time. I was finished. I was scrap heap
material. I was of no further use. I stayed that way, allowing
everyone to do everything for me until September of that year.
Then one day a colleague of mine visited me to deliver an
Education Department publication which he thought may
be of interest to me. It proved to be the catalyst of a huge
turn around in my attitude. There was a small advertisement
in the publication giving notice of a Master of Education
Degree course offered at summer school in the University
of Tasmania. I had a Diploma of Teaching and a Bachelor of
Education so was qualified to apply for this course which I
did. I was accepted and for the next three summers I went
to Tassie and studied like crazy. The fourth year I went over
to graduate as a Master of Education. Oh, what a feeling. My
sister and her husband came over to share the occasion with
me and there was much celebration. I thought this would lead
me into further gainful employment.
It didn’t.
My MS was still pretty angry and before long, I slipped back
into my own little pity party. By now I had lost the ability to
swallow properly and I had several bouts of being unable
to speak. I was no longer allowed to drive and did not have
permission to do relief teaching.
In 1998 I decided that I could, despite everything being against
me, drive again and teach again. The red tape abounded and
most of my friends thought I was setting myself up for failure.
It’s a long story, but by the end of the year I was driving again
and had written permission to do relief teaching in State
Government schools. Life began again. But it was slow. I was
not getting enough work and there is a wide gulf financially
between teaching and living on a pension.
14 | MSWA BULLETIN WINTER 2017

So, in 1999 with a courage that was not really my own, I
enrolled in the Bachelor of Social Science Course at Edith
Cowan University believing that if I couldn’t get a job in
education, I could get one in some aspect of human service.
On 21 April, 2002, I graduated and was awarded the degree
of Bachelor in Social Science. It had been a long haul.
I had a heart attack in August of 2001 followed by triple bypass
surgery in October. Having been discharged from that operation
I had three weeks to do three major assignments and complete
two major exams. That’s where the support network really came
into play. I was one very sick chick and one friend in particular
plastered the walls of my house with notes and I just sat and
studied those notes for many hours each day. Thanks Liz. The
exams came and went and I was not at all confident. I was back
in hospital when friend Liz rang and told me the results were
online and I had passed! The joy was immeasurable.
For 11 years I had a job and I felt like a real person again.
I worked for a specialised tutoring company on a part time
basis and it gave me more pleasure than I can describe. One
day I will get a job in some human service capacity and I know
I will have deserved it and I know I will do it well. I have proved
to myself that if something is worth fighting for it is worth
fighting hard for. I wanted this degree and I was going to get it
in my own time frame no matter what. It has been truly worth
the effort. It has been truly worth the stress. I have forged
some lifelong friendships with people who value me for who I
am and not because I have MS.
My final word is to people who have MS who may feel
that life is passing them by. Don’t let it. There is so much
one can do and every achievement, no matter how big
or small, gives so much pleasure. Don’t allow yourself to
have everything done for you. If you can do some things
for yourself then do them - don’t just sit there and let the
world pass you by. The world is full of opportunities for
everyone. Go for it.
NEWLY DIAGNOSED MEET AND GREET
SARAH LORRIMAR, MSWA PEER SUPPORT AND HEALTH EDUCATION COORDINATOR
Recently, the Newly Diagnosed Meet and Greet made a
welcome return. Our newly diagnosed Members were invited
to bring their friends and family for an informal opportunity
to meet with others in a similar situation. The group had a
wonderful turn out, with 18 people in attendance as well
as four MSWA staff including, Social Welfare Manager Lisa
Papas, Counsellor Cherry Chapman, Community Access
Nurse Rosie Hunt and myself.
The focus of the meet and greet was to create a safe place
for Members and their support persons, to listen to and
share experiences of their new lives with MS. The group
also provided a place to seek support from those with a lived
understanding and MSWA staff.
Feedback from attendees reported that the group was a way
for them to gain new information about MS, listen to other’s
experiences and to participate in the support system.
Our peer volunteer, Tom Lerner was in attendance to share
his personal story of being diagnosed with MS and his journey
so far. Tom spoke about how he has maintained his wellbeing
and a positive outlook on life with MS over the years.
With very positive feedback from the group, we hope to hold
another meet and greet soon.
Some feedback included:
“The evening exceeded my expectations, I learned more about
my partner and MS.”
“This was beyond my expectations! Definitely worthwhile.”
“A nice and relaxed environment. The meeting exceeded my
expectations.”
If you are interested in attending or would like to
provide any feedback, please phone Sarah Lorrimar on
9365 4858 or email Sarah.Lorrimar@mswa.org.au
MSWA BULLETIN WINTER 2017 | 15

OCCUPATIONAL THERAPY
IN PERSISTENT PAIN CARE
IAN CHEOK, MSWA OCCUPATIONAL THERAPIST
If you suffer from persistent pain, you are enduring more
than your fair share of obstacles. In addition to continual
discomfort, you may also experience a lot of frustration.
Persistent pain takes a major toll on your ability to do the
things that are important to you daily, such as cooking a
meal, having a shower, looking after your family, going to
work and going out with your friends. Left unaddressed, it
can cause you to lose your independence, leaving you little or
no alternative but to rely on others to do the things you used
to be able to do on your own.
Medical researchers now understand that various elements
are simultaneously at play in someone with persistent pain.
These elements can be physical (e.g. your body, issues in
your tissues, infection, inflammation), mental (e.g. beliefs,
fears, worries, anxieties) and environmental (e.g. heat/cold,
pressure, chemical exposure, pathogens). Researchers have
even discovered that our social and cultural environment can
affect how we experience and cope with pain. Pain is complex,
and to manage it successfully, we will have to understand its
many elements.
Occupational therapy is the use of purposeful activities
to help people improve their function and independence.
Occupational Therapists (OTs) are qualified health professionals
who help people achieve good health and wellbeing using
specific activities. OTs have a detailed understanding of the
interrelationship between the complex systems of the human
body and the external environment. This is helpful when
dealing with persistent pain.
OTs can help people cope with and manage their pain, so
they can continue to carry out the activities most important
to them. For instance, some activities can stimulate pain,
especially if they require more effort or range of motion than
you have available. OTs can help to find strategies to make the
activity less taxing, or find ways to modify the environment
to make the activity more doable. As OTs are very familiar
with all kinds of adaptive devices, they may suggest a device
that will make the activity easier. Sometimes it’s also a
question of breaking down the activity into manageable bits,
with rest breaks in between, that will allow the activity to be
accomplished without triggering pain.
When you have persistent pain, you often experience a great
deal of fatigue because of constantly tolerating the pain,
difficulty sleeping, or being less active. OTs can suggest ways
of structuring your day to manage fatigue. Alternatively, they
may be able to suggest sleeping positions that will allow you
to get a better night’s rest. In addition, an OT may also be
able to help you find the right activities in your community
that meets your needs to overcome fatigue and feel more
refreshed. Helping you engage in such activities is also a
wonderful way to make sure your family and friends can
participate along with you.
Persistent pain also causes stress, which can affect your
emotional and mental wellbeing. OTs can show clients how to
redirect their pain so that it interferes less in their daily lives.
They may achieve this by teaching relaxation and visualisation
activities that will make it easier for you to cope with the
feelings of loss, anger and other emotional challenges of
dealing with pain every day.
Finally, there is still a lot of stigma associated with having
persistent pain. It’s an invisible disability and, as such, the
public may have difficulty understanding and empathising.
OTs pride themselves on their role as advocates. As such,
OTs usually have good knowledge of community resources as
well as an understanding of the way the healthcare system
works. An OT may be able to help you navigate the system
and find the right resource to help you. If you have a question
about how to get more support, you can talk to an OT to get
some clever ideas.
In addition to the MSWA Occupational Therapy team, the
MSWA Counselling team also offer mindfulness meditation
workshops which can assist some people with managing
persistent pain.
If you are interested in finding out more about this
service please contact the MSWA Occupational Therapy
team on 9365 4854.
16 | MSWA BULLETIN WINTER 2017

PROTECT YOURSELF
AGAINST THE FLU
Protect yourselves and others
An annual flu vaccination is recommended as the first step
in protection against the flu. It reduces the chances of both
catching and transmitting the flu. This is especially important
for those at risk of complications arising from influenza and
those in close contact with at risk people.
Influenza, also known as the flu, is highly contagious and
spread through 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
• Flu viruses can survive an hour or more in enclosed
environments, meaning contaminated respiratory secretions,
can be picked up even without someone coughing or
sneezing near us.
• Even before we show symptoms, we can be shedding the
flu viruses; infecting others around us.
• Flu viruses are characterised by constant evolution; this
means they can pose a new threat every year.
The good news – you can protect yourself and others
through good cough and sneeze etiquette including:
• turning away from others;
• covering your mouth and nose with a tissue or your sleeve;
• using tissues rather than a hankie;
• disposing of used tissues in the nearest bin; and
• washing your hands or using alcohol hand rub as soon as
possible afterwards.
Hand washing is the single most effective way of killing
the flu virus and limits the spread of the flu and other
respiratory infections.
Always wash your hands with soap and water or alcoholbased
product (gels, rinses, foams) that don’t require water:
• after coughing, sneezing or blowing your nose;
• after being in contact with someone who has a cold or flu;
• before touching your eyes, nose or mouth; and
• before preparing food and eating.
Stop the spread in your house
Flu viruses can survive for more than eight hours on hard
surfaces; you should regularly clean frequently touched
surfaces such as door handles and benches.
Flu viruses can be inactivated and removed with normal
household detergents. Keep personal items such as towels,
bedding and toothbrushes separate. Don’t share cutlery and
crockery, food or drinks.
Is it the flu or a cold?
Colds affect the nose, throat and upper airways, and common
symptoms include coughing, fever, sore throat, sneezing,
blocked or runny nose and general congestion. They are
caused by about 200 different viruses and there is no vaccine
for a cold.
Symptoms of a cold tend to be mild to moderately severe.
The flu is a viral infection affecting your nose, throat and
sometimes your lungs. Typical symptoms of flu include fever,
sore throat and muscle aches.
Both colds and flu can also lead to complications, such as
pneumonia, which can sometimes lead to death.
Check out the healthdirect website for more information:
healthdirect.gov.au/cold-or-flu-infographic
If you are feeling concerned about any symptoms
of a cold or flu then see your doctor or call an
after hours doctor.
If you would like to speak to a registered nurse, call
healthdirect on 1800 022 222, available 24 hours a day,
seven days a week.
MSWA BULLETIN WINTER 2017 | 17

THAT’S LIFE
WITH NARELLE
NARELLE TAYLOR
It has been 25 years almost to the day since I went to a
seminar for the newly diagnosed at MSWA in Wilson. To me
at the time, it could have just as easily been for the newly
condemned. I went anyway, with my family.
I was deep in denial so everything they told us seemed so
horrific. I recall my late husband Greg got up in the middle of
it and went to the races. I don’t blame him.
When Dr Alan Kermode addressed a large group of us, he
focussed on what the research had established so far. He was
kind without giving false hope. He spoke about the dedicated
work towards finding a cure.
I remember he said some research had found MS is more
common in areas farthest from the equator, such as in
Scotland, but virtually unheard of among the Inuit of the Arctic.
How often an Eskimo encounters a neurologist, I wondered.
Next, the people around me began to ask questions and share
anecdotes. Some of their stories were very moving and all
of them were sad. The indignity of the disabilities that MS
inflicts seemed to be a theme. I wanted to say something
positive so I stood (I could then), and told the seminar I did not
care how my disability appeared to others.
“I still have things to do,” I said. “I will keep doing them, even
if I have to drag my back legs.”
Everyone laughed and so did I. But I was actually serious, and
I still am.
I have had MS for such a long time now. I no longer wait around
for a miracle cure and instead get on with this business of
living my life. On and on. As John Lennon once sang, “Life is
what happens to you when you are busy making other plans”.
As it turns out, I have literally had to drag my legs sometimes,
most recently when I was stranded on my bed. It was just
on dawn and my powerchair was parked on the other side of
the bedroom. It was an especially busy time of the day at the
aged care facility where I live, and the conversation I already
had with my shower lady told me she considered it far too
early for me to get up.
I did not agree. After she left the room, I slid down the side
of my bed like a teenager escaping to a party without their
parents’ knowledge. I did my best impression of an SAS
soldier to pull myself across the carpet on my belly towards
my mobility device. I impressed myself. When I reached my
powerchair, I spent a good 40 minutes climbing up to sit on
it. Part way through this massive effort, I was grateful for
physiotherapy. I don’t suggest it was pretty though.
Triumphantly positioned in my powerchair, I moved my hand
to the throttle and smiled. Thunder Road. I drove into the
common area and looked smug. I think we’ve all got stories
like this.
All of us with MS are getting on with it every day. A decade
after I had been dealt what Greg used to so succinctly call
“the s…t cards” of MS, I went to another seminar for the
newly diagnosed, this time as a speaker. The people I saw
reminded me what a shock it all had been. A young woman
came up to me after I gave my “keep going” speech and said
she was relieved. She told me, “I figure that’s the way to do
it.”
Here I am getting on with it, and pragmatic about some of
the collateral damage. Last week I shattered a floor-to-ceiling
window with the footplate of my powerchair. I was unharmed,
and since MS made me do it, I was also not to blame. I did
feel bad but these things can happen when you need a 200kg
machine to move around a room.
The footplate has form. Last year it reduced a ceramic toilet
to a pile of shards. I also felt bad about this. Fortunately, the
staff at my aged care facility believe that my independence
is worth more than a Caroma toilet bowl or a sheet of glass.
They also get on with it and call a tradie.
18 | MSWA BULLETIN WINTER 2017

MEET
Ms CARER
Meet Ms Carer, a fit and active lady enjoying her retirement
years with a beloved partner. But, alas, her marriage is
somewhat of a triangular affair with the third party being MS.
Recently this interloper (MS) has not been content with playing
second fiddle and is trying to dominate the relationship.
Consequently Ms Carer feels overloaded with the work and
effort needed to maintain a loving and elegant lifestyle with
her partner of 40 years.
Ms Carer is reeling over the loss of free time with so much of
her day and night taken up with the tedious and often hard
tasks of caring. The greater emphasis now placed on her role
as carer also dulls her usually positive outlook and lessens
the time and energy for feelings of love and friendship. Her
rose coloured glasses are cracked and cloudy but true to
her personality she keeps them nearby, hoping they can
be repaired. And she also copes by making a practical
assessment of immediate needs and devises a plan of action.
Ms Carer is just waiting to let her hair down but for now she
has it tied up underneath her sponge hat, a hat so useful for
absorbing burdens and soaking up tears. The hat carries her
busy bee moniker and a useful bell now that she feels like she
is at everybody’s beck and call. Always enjoying fashion, Ms
Carer still tries to dress nicely with practical but stylish black
slacks and a colourful top.
Her amethyst necklace is worn because traditionally it was
thought to heal and keep the owner cool headed and it holds
other symbolic meanings dear to Ms Carer.
An added vest with useful pockets holds her dreams and
interests close to her heart as she does the more mundane
chores but more about the vest later.
Ms Carer is weighted down with her red bag chock full of
MS carer paraphernalia: a notebook full of medical notes,
prescription refills, various medications, printed instructions
from the chemist, a water bottle to ensure her spouse drinks
his two litres daily, tools to fix wheelchairs, catheter supplies,
cleaning products and a rock or two to signify the weight of
responsibility and workload – this is adjustable. Her arms and
hands seem to have grown oversize to cope with her load.
Ms Carer’s vest is worn in anticipation of the interests close
to her heart which seem to be a bit forgotten in the recent
workload of care. The busy bee pocket holds a sewing
machine for her much loved hobby time. The flower pocket
reminds her of her love of beauty and her childhood love of
picking every flower she saw! There is a pocket for love, the
attached key opens her heart. The star pocket looks empty
but it is full of pride at being a star at coping and managing
life’s dramas.
Ms Carer keeps checking her well-worn rose coloured
glasses because one day, just maybe, she will look
through them and detect a silver lining.
THE PRESENT
DR ANDREW E. ONG
Each of us has a bank which credits our account every
morning. However, if we do not draw or utilise this account
the credit cannot be either carried forward or accumulated,
but is lost forever.
This bank is called time. Each day we are credited with a
day’s worth of 86,400 seconds, but none can be carried over
to the next day. If we waste a second, it is lost forever. We
must therefore invest this time as best we can in maintaining
our health, happiness, peace of mind, and in trying to make
the world a better place to live in. This is the value of time, but
how do we spend it?
Time is the most valuable gift we have been given, but the
least appreciated until it is brought suddenly to our notice.
A student who has failed an exam all of a sudden knows the
value of a year wasted. Mothers of premature babies know
the value of a month. Politicians know the value of a week.
Lovers in a private romantic rendezvous know the value of
an hour. Miss a bus or train and you will know the value of
a minute. Witness an accident and you will realise the value
of a second. Perhaps ask an athlete about the value of a
millisecond?
Therefore, treasure every moment that you have to
spend. Ensure that a second spent counts for something,
for time, it is well said, “waits for no person”. Share a
moment with a friend, a lover or someone special.
Yesterday is history, tomorrow is a mystery, but today is
a special gift. That is why it is called ‘The Present’.
MSWA BULLETIN WINTER 2017 | 19

AULD ACQUAINTANCE,
NOT FORGOT
ROS HARMAN
I first bumped into Helen when I was seven months pregnant.
She was pregnant too, and we struck up a friendship
immediately, comparing notes about stretch marks and
morning sickness and other baby paraphernalia. This was
1991 and everything was exciting and new for me, as it was
my first (and only) pregnancy. It was Helen’s fourth, so she
had lots more experience in the natal arena.
We remained friends for a number of years. Our children played
together and Helen and I played together too, taking a break
from parenting duties occasionally to go clothes shopping or
see a film. I went to my first ever opera with Helen as she
was a passionate fan. MS was playing havoc in my life in
those years, like some nasty practical joker launching sudden
surprise attacks on me, with frequent and irregular relapses,
which usually left me unable to walk, and then gradual
remissions. Helen was a good friend to me, helping out with
my child and keeping me company throughout it all.
About four years into our friendship, Helen’s father was
diagnosed with Huntington’s Disease, a neurological condition
that affects movement, thinking and emotion. It is a genetic
condition so if your parent has it, you have a 50% chance of
inheriting it. There is no cure for Huntington’s Disease and
limited treatment. After genetic testing, Helen discovered that
she had the gene and from then on knew that sometime in
the next decade or two she would begin to have symptoms.
I lost contact with Helen after a few years when I moved house
to a distant suburb. I don’t know why I let the relationship
lapse – I was busy I suppose, and I let the little effort
required loom larger than it really was. Years passed, and I
often thought of her. I wondered how she was coping, and
how her family were dealing with Huntington’s, which must
surely have manifested itself by now. Then one day recently,
I discovered her on a social media site and we renewed our
contact. She and her husband had moved and now live only
10 minutes away from me, and I was invited for afternoon tea.
Meeting Helen again after so long was both lovely and sad.
She greeted me with a big hug and it felt great to be with her
again, but it was impossible to ignore the insidious effect of the
monster in her life. Her speech was affected, though I could
still understand her, and she made constant, uncontrollable
jerky movements with her arms and legs. Nevertheless, she
was still the same person that had been my friend before, and
we spent a wonderful couple of hours together sharing news
of the children and of our lives.
MSWA has for some years supported a handful of people with
conditions other than multiple sclerosis, but with the coming
of the NDIS has officially placed itself to offer services to
many neurological conditions. Meeting Helen again really put
a face to what that will mean. I feel so grateful that MSWA has
been there for me over the 29 years that I have lived with MS.
Having a neurological condition is no bowl of cherries and
there is no magic bullet for Huntington’s Disease or for MS.
There is help available though that makes life easier. I am
so glad that I could offer Helen some information about the
support that MSWA will be able to give her in the next few
years, and I know that it will really make a difference for
Helen and her family.
I am so glad that we are friends again.
20 | MSWA BULLETIN WINTER 2017

MINDFULNESS
MEDITATION
SARAH LORRIMAR,
MSWA PEER SUPPORT AND HEALTH EDUCATION COORDINATOR
What is mindfulness?
We spend so much time thinking about things from the past,
or worrying about what may happen in the future that we
often forget to appreciate the present moment. Mindfulness is
a practice which involves consciously bringing awareness to
our current experience. In mindfulness meditation, the aim is
not to change or control our thoughts and feelings but instead
observe them without judgment.
Being mindful allows us to be aware of our surroundings, pay
attention to what we’re doing and the things around us. How
many times have you walked into a room and forgotten why
you were there? Or checked your watch only to look back up
and forget the time? These are some examples of when we are
being mindless. When we are not being mindful, it’s difficult
for us to move away from the automatic and unhelpful ways
of thinking and responding that we’ve been conditioned to.
Mindfulness helps us separate ourselves from our reactions,
allowing us to have a more conscious awareness of how we
feel and what is around us.
Why practice mindfulness?
Practicing mindfulness helps us clear our minds so we can
become more aware of ourselves and our environment. By
slowing down our thoughts, we can better understand how
we feel and consequently this can help us manage things
such as illness.
Mindfulness is useful for a variety of reasons and has been
known to reduce stress, improve self-awareness as well
as enhance emotional intelligence. When we are not being
mindful, our vulnerability to stress and poor mental health is
increased. Mindfulness provides us with perspective, reducing
any tendencies to overthink and act with an emotional charge.
If we focus on present sensations and disengage from habitual
thoughts, then automatically we relax and can be brought out
of moments of stress and anxiety.
Mindfulness gives us an opportunity to understand and be
aware of our autopilot reaction, so that we can alter and
improve the way we think and feel about our lives.
Other benefits of mindfulness include:
• Being present
• Safe exploration of unpleasant thoughts
• Becoming aware of what you’re avoiding
• Being more connected to self and others
• Being less reactive to unpleasant experiences
• More calmness and peacefulness
• Understanding that everything changes
(e.g. thoughts and feelings)
• Developing self-compassion
Anyone can practice mindfulness and it’s available to us in
every moment. Although it seems like a simple concept, it is
not necessarily easy. For many of us, we have spent our lives
learning to shift our focus away from how we presently feel.
Mindfulness is a skill which takes time and practice.
Where can I practice mindfulness?
Our MSWA Counsellors run mindfulness meditation workshops
throughout the year. These workshops are for both beginners
and those wishing to deepen their practice. The sessions
include guided meditations and provide attendees with skills
for relaxation and mindfulness. Our classes aim to empower
people to respond more effectively to life challenges.
There are several sessions run throughout the year in
four locations – Rockingham, Armadale, Currambine and
Mirrabooka. Classes are held from 10am to 12pm and are
just a gold coin donation. For more information, please
contact Sarah Lorrimar at Sarah.Lorrimar@mswa.org.au
or on 9365 4858.
References
perthmeditationcentre.com.au
beyondblue.com.au
McKenzie, S., and Hassed, C. (2012). Mindfulness for Life.
Wollombi, NSW: Exisle Publishing.
MSWA BULLETIN WINTER 2017 | 21

MSWA VOLUNTEERING
NEWS
DAWN BURKE, MSWA COORDINATOR OF VOLUNTEERS
Hello again and welcome to the winter edition of the Bulletin.
I can’t believe we are halfway through the year and so much
has happened - as always is the case at MSWA.
The first part of my year is spent focussing on National
Volunteers Week and organising a beautiful luncheon to invite
our volunteers along to. What a great way for us to celebrate
together and to say, “Thank you for all you do.” This luncheon
is MSWA’s way of acknowledging their efforts and the time
they give to us, and to let them know how appreciated
and valued they all are to all MSWA staff. Without you, our
volunteers, we wouldn’t be able to do all that we do for our
Members. I’d like all volunteers to take a moment and pat
yourselves on the back, and say well done. I would also like to
take this opportunity to send out my own personal heartfelt
thanks to you all.
The luncheon was a beautiful affair, and again held at
Burswood on Swan. As per previous years we had the most
amazing food and none of us went home hungry. I’m sure
some of us felt we could roll home, we felt so full. If you didn’t
try the hummus you missed out on a mouth-watering treat. I
have tried many but this was without a doubt the best I have
ever tasted. Many of the volunteers thought the same and
even had the chef write out the recipe, which he happily did.
I took a photo of the recipe he gave the volunteers. Aren’t
mobile phones convenient little devices at times? The staff at
Burswood on Swan are the most helpful staff I have ever come
across. They make the organising of this event incredibly easy
and on the day, are happy to lend a hand in any way to make
it run as smoothly as possible.
The view from the venue is just glorious, sitting right on the
river overlooking Perth. You couldn’t ask for more, but more
we got! We had a couple of seagulls floating around, who
thought they would come inside every now and then to have
a chat. There was another bird, which I believe is the Great
Egret, strutting its stuff in all its finery for all to see and a
friendly spider sitting in a tea cup hoping to enjoy the soothing
aroma of a hot cup of tea. The table centrepieces were again
designed and made by two of our volunteers, Lesley Pitt and
Lynn Hoonhout. They looked fantastic - I would like to say
thank you for creating such lovely centrepieces. They gave
the tables such a personal touch. The feedback from the
luncheon is always fantastic and everyone comments on how
much they enjoy the venue. Hopefully we can go there again
next year.
During the Volunteer Luncheon our President, George
Pampacos, brought forward a few volunteers that were
nominated by their Department Supervisors for a Certificate
of Appreciation Award. The recipients for 2017 were Pam
Stupples, Callum Begg, Priya Rath, Lesley Pitt, Robert
York, Lynn Hoonhout, Bee Lean Kim, and Rosalind Beatty.
Congratulations to you all, thank you for your ongoing efforts
and I’m sure you will be with us for many more years to come.
I have been fortunate to attend two camps already this year.
The first was a last-minute inclusion for me in April. I attended
the Carers Retreat on Rottnest and took a volunteer, Rosalind,
to assist myself and one of the counsellors, Karen Brown
throughout the three days. The weather was amazing and
the view from the unit I stayed in was second to none. The
carers who were fortunate to share a unit with Rosalind were
very spoilt and enjoyed being fussed after. It is important for
our carers to have rest from their caring role with their loved
ones. To have someone available to care and nurture them
for a short period is worth its weight in gold. It is extremely
important to care for the carer, as the role can be extremely
demanding and sometimes thankless. The carers had a great
time and enjoyed soaking up the sun rays.
22 | MSWA BULLETIN WINTER 2017

In May, I attended the first Members camp for 2017. As usual
it was in Guilderton, or more affectionately known as Moore
River. The weather was mixed with rain, clouds and sun, but
the weather gods were doing their job on the day of the river
cruise and our BBQ lunch and kept the sun out while keeping
the rain and clouds away. This was the biggest camp I have
attended in my years here at MSWA and it was great to see
quite a few new Members come along.
We were very fortunate to have three volunteers attend this
camp, Rosalind, Jacqui and Mike. You have no idea how hard
these volunteers worked over the three days. The Member
camps are so much more involved than the Carers Retreat,
and require a much more hands on approach. The volunteers,
as well as staff, most of whom volunteer outside of their
regular work hours on camp, must load and unload equipment
and belongings, drive to the venue, help set up and pack up
Members beds, constantly wash and dry dishes (it is such a
food fest), help in the kitchen, help with activities and provide
general support to Members throughout the day. This camp
would not run as well as it does or be as enjoyable as it is
without the volunteers.
Our volunteers give the staff the space to organise activities
for the Members. This year we focused on Warrior games
and groups were formed, shields were made and chants
were roared. As always, we had many laughs, rekindled old
friendships while making some new ones, shared stories and
generally had a good time. Thank you to all my volunteers and
to all the staff who attended. For me to make a difference in
others’ lives is important, and these camps make a difference
to many, and for that I am truly grateful.
When I started in this position, over four years ago, Member
Services volunteer numbers were fluctuating around
100-105. The volunteer numbers have since grown in this
area and numbers are now fluctuating between 125-130.
This is amazing and shows that MSWA is a great organisation
for volunteering.
We are also very fortunate to have many long-term volunteers.
MSWA’s Events team are always looking for volunteers for
the MSWA events that are held throughout the year. Trish
Watson, the Events Coordinator is at the helm of recruiting
volunteers for upcoming events, so if you have a spare few
hours throughout the year, or you know someone who would
like to assist with the events, pass on Trish’s contact number
6454 3116.
Once again it has been a pleasure talking with you all. I
look forward to catching up with you whether it is around
the hallways at Wilson, out and about in the community or
by phone and email. Please do not hesitate to contact me to
discuss anything or just to say hi. My door is always open, if
you can find me, and I’m happy to have a chat. Welcome to
all our new volunteers, welcome into the MSWA family, and I
look forward in getting to know you better.
Until next time, it’s bye for now.
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MSWA BULLETIN WINTER 2017 | 23

COMING TO GRIPS
WITH MS
TERRY YOUNG
I was diagnosed with MS in December of 2000. I had moved
back to Perth a few years earlier with my wife at the time
and two children. We had recently bought a house and I
had just taken on the ownership of a new marine trimming
factory. The business was involved in boat upholstery and it
was wonderful, creative work and I felt I could really express
myself. However, I was working seven days a week and was
experiencing some relationship issues – so I was under a lot
of stress and I didn’t allow myself the time to rest.
I first noticed my symptoms at work, leaning on a work bench
feeling overcome with fatigue and having blurred vision. My
running was affected and one night lying in bed, I noticed that
one of my legs was a completely different temperature to the
other. It took three months of going and back and forth with
my GP to finally come to a diagnosis.
Initially, I had no idea about MS apart from my daughter having
participated in the MS Readathon. It was a strange experience
after I had been diagnosed. I didn’t understand what MS was
and when I came to MSWA to speak to one of the nurses,
I saw people in wheelchairs and that was confronting. The
thought of being in a wheelchair was the scariest expectation
I had. I refused to believe that it could be me. It took me two
years before I accepted the disability pension, not accepting
of the word disability. I think when you’re initially diagnosed
and you know nothing about MS, particularly 17 years ago
when there wasn’t much available, you are not given much
hope. Thankfully, I have since learnt that there is a lot you can
do to feel better and I can do things to help myself.
I continued to drive after my diagnosis, after a while I used a
car with hand controls as I had to leave my foot off the brake.
I used a walker to help me do things and then I began to use
a wheelchair to help me when travelling long distances and
for activities like shopping. In 2010, I was in a car accident
which left me permanently in a wheelchair and it was after
this when things became harder. I couldn’t use the sewing
machine for work anymore and my body felt weaker. Even
though life has changed now that I’m in a wheelchair, I have
not lost my passion for life. As I’m sure we all know, life can
deal us many and varied hands, and it is how we deal with
that which makes the difference.
My MS is stable at the moment. Having progressive MS, I
know there is a slight decline. My writing is not very good
anymore and my arms can become very fatigued. Fatigue
can affect me out of the blue sometimes, often it’s due to
changes in the weather. My legs and my muscles is where I
feel pain. I also have some nerve issues, like a little electrical
shock when I’m in the pool. I try not to focus on this though.
Working with different people has helped me understand why
these things are happening to my body and has helped me to
manage these changes. Listen to your physiotherapists and
your OTs - pick their brains because you need them.
Before I was diagnosed, I wasn’t eating healthy and I was
smoking. These days I have quit smoking, my diet has
improved immensely and I am regularly exercising. I go
swimming at my local pool and I have an exercise program at
home with assistance from a physiotherapist. Each morning
I wake up at 5am and meditate for half an hour before my
morning coffee. Meditating allows me to get a sense of how
my body feels - I notice where my body is holding tension
and which muscles are tight. Meditation also allows me to
be mindful which I find helpful. Of course, I’m tired at the
end of the day but these activities make me feel like my days
are fulfilled. My relationships with people have helped me
so much. Social connection is extremely valuable for your
wellness. I’m conscious of positive self-talk and I value my
independence, so I do as much as possible on my own.
In the past few years, I have come to realise all the services
MSWA offers. I have met some great friends through MSWA
and have accessed counselling, occupational therapy,
physiotherapy and nursing services for about 10 years now.
About a year ago, I struggled to get in and out of bed. I found
it hard to reposition myself and get comfortable. It was then I
learnt that MSWA offers services which could help me out at
home. MSWA care support workers now visit during the week
to help me get ready for the day and into bed. I have always
felt that acknowledging you need help does not take away
from yourself or make you more disabled – it helps make you
more independent.
I don’t deny that I have MS. It makes things tough but I have
accepted that I have it and try not to focus on the negative.
Having MS has opened a lot of possibilities for me. I have
made new friendships, recognised the passions in my life and
its inspired me to help others.
My advice to others is to be kind to yourself. It’s important
to recognise that there are challenges and it will take
time to do things, but you will get it done.
24 | MSWA BULLETIN WINTER 2017

SOUTH WEST
Regional Round Up
The latest
news from
the South
West
BUNBURY OUTREACH NEWS
SUZY BARKER
A big warm “hello” from all the Members and staff at Bunbury
Outreach Group, situated inside the fabulous new Bunbury
Community and Health Services Hub.
We are all ecstatic with our wonderfully spacious Outreach
areas, atrium one and two (when we draw the room-divider),
enabling us to comfortably move around and enjoy our social
gatherings every Wednesday. We now can set up tables to
create craft activities, play board and floor games and do
the word quizzes on the shiny new white board! We have
completed our first art activity, a colourfully painted ‘Outreach’
plaque to be proudly mounted on the wall in our social area.
In early April we held our first big event – a Hawaii Vacation
themed morning tea! It was a hoot to say the least with
everyone getting into the spirit of being colourfully dressed.
We all attempted a quite comical hula dance around the
room before enjoying a morning tea of Hawaiian pizza, fruit
salad and tropical punch. We had such a great morning with
many laughs, so thanks to Wilson Outreach for the loan of the
Hawaiian box of goodies.
We are now planning our next holiday adventure to Paris,
France in mid-July! We are aiming to recreate a typical
Parisienne café ambience, with rustic French decorations,
music and memorabilia of famous icons and places in Paris.
We even may dare to attempt the Can Can dance! Our project
now is to create our ‘French Connection’ box with handmade
costumes, crafty flags and all things French so we can pass
the box onto the other outreach groups. So until next time,
watch this space, Viva La France!
MSWA BULLETIN WINTER 2017 | 25

ALBANY OUTREACH NEWS
CAROLINE CLARKE-SMITH, MSWA RESOURCE COORDINATOR
In May we enjoyed a lovely morning tea with 10 of our Members
at The Three Anchors restaurant at Middleton Beach. It was a
great social outing and we look forward to the next one.
Our next outing will be a lunch on Wednesday 19 July, at the
Emu Point Café. We look forward to seeing everyone there.
Please contact us to register your interest.
Physiotherapy exercise classes commenced May 31 and ran
on Wednesdays for six weeks. These classes may continue
depending on interest. For more information or to register
your interest, please contact our office.
We enjoyed a visit from MSWA Senior Counsellor Leonie
Wellington, Social Welfare Officer Gerald O’Sullivan and
Senior Nurse Nimisha Baird. It was great to have them here
and we received some input from their fields.
The MSWA Albany Swim on March 18 was a great success.
Thank you to all those who contributed. Your time and effort
assisted in raising more than $20,000.
Please be sure we have the correct contact details for you
so we can keep you up to date. To update your details or
for any other enquiries please contact us on 9377 7800.
WILSON OUTREACH NEWS
NICOLA RYAN, MSWA SENIOR OUTREACH COORDINATOR
Our first half of the year at Wilson Outreach has been
extremely busy and a whole lot of fun! Members often say
when they are here that “the place just doesn’t stop”. That’s
of course what we like to hear as ultimately everything we do
is for the good of our Members!
Many have enjoyed going on outings in the community and
with the beautiful weather we have had in the first half of
the year this was always going to be a winner! Sculptures
by the Sea, a yearly event at Cottesloe beach, proved to be
very popular amongst our Members with more going this year
than ever.
For the first time a visit was arranged to the Scented Garden
in South Perth. Our Members from the ‘Embrace the Shake’
group thoroughly enjoyed their time wandering around the
beauty on the foreshore and have come back with lots of
ideas to have something similar reproduced here, so watch
this space!
Movies are always a popular outing as many Members find
it difficult to get there on their own. With the buses that we
have on hand at Outreach this is easily arranged and after the
movie there’s always time to get back to the centre for lunch!
We are very lucky here in Perth to have such fantastic parks
available literally on our doorstep at Wilson so a favourite
outing for both Members and staff alike is a stroll along the
Shelley foreshore and the beautiful Kent Street Weir!
From outside outings to inside ones, we are again travelling
the world and so far, this year have been to Italy and
Las Vegas. Just like our previous two years of travel we
manage to bring the places alive in the atrium where our
Outreach meets.
From different props, many pictures, great music, items
brought in for show and our awesome staff arranging activities
we soon find ourselves feeling that we are right there in the
moment! Lunches while we travel are also an important part
of our journey and we have had some amazing meals with
all the fantastic aromas throughout the building helping with
the atmosphere!
In the times in between, when we are not travelling inside or
outside, we always have activities that Members can join in on
as well as some great places to sit and chat with others. Our
volunteer pianists are here three days per week entertaining
us so really there is never a dull moment! Members often
pass through after other appointments and everyone is more
than welcome to stay for a cuppa and chat.
Outreach is a place to do exactly that! So please come
and join us.
26 | MSWA BULLETIN WINTER 2017

GERALDTON TRIP
There were many activities happening as part of this year’s
annual visit to Geraldton!
Visiting MSWA staff included Senior Community Access
Nurse Jill Crombie, Social Welfare Officer June Brown, and
Physiotherapy Manager Dave Hathorn. Together, they made
visits to Members at home and attended a local hospital,
nursing home and the Disability Service Commission to
update them on the recent growth of MSWA. They also met
with the local MSWA Physiotherapists and masseur and joined
the Geraldton peer support group which meets each month.
On the first day of their three day visit, a Bunnings sausage
sizzle fundraiser was organised by the wonderful Members in
Geraldton which raised an impressive $800!
The visit was a great way to connect with local Members
and staff. MSWA are looking forward to next year’s visit
– which thanks to the suggestion of one of our Members,
could involve a fishing expedition!
MSWA staff and Members at the Bunnings fundraiser.
NORTHAM MORNING TEA
On June 1, a group of MSWA Members from Northam
and surrounds came together for a peer morning
tea at the Bridgeley Community Centre. With people
travelling from areas such as Bolgart and Toodyay,
there was a great turnout of 15 people! This included
people living with MS, their support persons and two
staff members from Northam Hospital.
Joining the group were MSWA staff members,
Peer Support and Health Education Coordinator
Sarah Lorrimar, Counsellor Cherry Chapman, NDIS
Client Relationship Coordinator Pranjal Pawar and
MS Nurse Dee Menzies.
Following introductions, the group quickly warmed to
each other and the session was spent sharing stories
of life with MS as well as discussion on topics such
as medication, neurologists, accessing supports,
wellness and the NDIS. With such a successful first
meeting, the group has already put in the motions to
continue a regular meeting in Northam!
MSWA BULLETIN WINTER 2017 | 27

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