MSWA Bulletin Magazine Winter 2022

THE OFFICIAL MAGAZINE OF MSWA
Winter 2022
mswa.org.au
INSIDE
/ Farewell Sue Shapland
/ Pain and pain management
series: Part 5
The end of an era: this quarter, we wave goodbye
to Sue Shapland (right) after 19 ½ years at MSWA,
and Ros Harman (left) steps down from the MSWA
Board after 18 years.
/ MSWA’s Employment
Support Service
/ Tips for staying motivated
over winter

WILSON CENTRE
29 Parkhill Way 9365 4888
Fax 9451 4453
Freecall 1800 287 367
See Health Team Dept contacts on this page
SERVICES DIRECTORY
CHIEF CLIENT OPERATIONS OFFICER –
MEMBER & CLIENT SERVICES
Nicola Washington 9365 4840
MANAGER ALLIED HEALTH SERVICES
Carol Chong 9365 4873
NDIS TEAM 9365 4824
OUTREACH GROUPS
Wilson Outreach 9365 4830
Beechboro Lodge 9377 7800
Southside Outreach 9592 9202
Albany Outreach 6154 5149
Bunbury 6454 2800
MANAGER CLINICAL SERVICES
Vanishree Chetti 9365 4818
MARGARET DOODY RESPITE HOUSE
Senior Coordinator,
Nelly Higginson 9385 9574
FERN RIVER ACCOMMODATION
Manager, Danuta Figurska 9356 2747
HAMILTON HILL ACCOMMODATION
Manager, Jo Nouwland 9331 5780
TREENDALE GARDENS
RESPITE & ACCOMMODATION
Manager, Linda Kidd 9725 9209
BUTLER SUPPORTED
ACCOMMODATION FACILITY
Manager, Chris Rush 6154 5120
ALBANY SUPPORTED
ACCOMMODATION FACILITY
Manager, Kate Jones 6154 5085
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
For general feedback or complaints please
contact Davina Sawyer 6454 3173 or
feedback@mswa.org.au
EDITORIAL WORKING GROUP
Sue Shapland, Nicola Washington,
Libby Cassidy, Jamey Claffey and
Nicolette Murphy.
CONTRIBUTORS
Geoff Hutchinson, Carol Chong,
Dajana Tesevic, Vanishree Chetti,
Denise Vogels, James Beckett,
Tracey Hockey, Misty Reinkowsky
and Crystal Chan.
The Editorial Working Group 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 MSWA’s staff, advisors,
directors or officers.
NURSING
Our neurological liaison nurses are usually the first point of contact after the
neurologist’s diagnosis.
COMMUNITY NURSE: 9365 4888
PHYSIOTHERAPY
Our team provides treatment interventions to develop and maintain mobility
and function.
JAMES BECKETT, MANAGER: 9365 4837 OR PHYSIO DEPARTMENT: 9365 4834
OCCUPATIONAL THERAPY
Occupational Therapists enable Clients to continue their work and other interests
for as long as possible through advice, aids and equipment.
CRYSTAL CHAN, MANAGER: 9365 4804 OR OT DEPARTMENT: 9365 4888
SPEECH PATHOLOGY
Our Speech Pathologists assess, diagnose and create individualised treatment
programs for Clients who experience swallowing and/or communication difficulties.
PAMELA WINDRAM, MANAGER: 6454 3140
DIETETICS
Dietitians are university-qualified nutrition experts who promote general health
and disease prevention/management through dietary changes.
PAMELA WINDRAM, MANAGER: 6454 3140
COUNSELLING, PEER SUPPORT & HEALTH EDUCATION
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.
TO MAKE AN APPOINTMENT PLEASE CALL: LISA PAPAS, MANAGER: 9365 4836
OR COUNSELLING DEPARTMENT: 9365 4811
SOCIAL WELFARE
Social Welfare Officers assist Clients and their families to access services
and supports to remain living independently at home. They specialise in case
management, advocacy and sourcing funding options.
KATH KNIGHTS, MANAGER: 9365 4835
COMMUNITY SUPPORT
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
Department of Communities - Disability Services, and our own fundraising efforts.
VICTORIA AMEY, MANAGER: 9365 4851
CUSTOMER ENGAGEMENT DEPARTMENT
Our experienced teams will provide you with personalised support right
throughout your NDIS journey. From helping you to access the NDIS to working
with you to get the most from your plan, our trained staff are here to help.
GEOFF HUTCHINSON, MANAGER CUSTOMER ENGAGEMENT: 9365 4879
CAMPS & RECREATION
MSWA provides separate recreation camps for Clients, 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.
MALA PADMANATHAN, COORDINATOR FOR CAMPS & RECREATION: 6454 3184
AGED CARE
MSWA delivers all levels of Home Care Packages to eligible people with
a neurological condition who are over 65. Services are delivered by staff
specifically trained in home care for older Australians who are living with a
neurological condition.
JUDITH CLARK, AGED CARE COORDINATOR: 9365 4807
EMPLOYMENT SUPPORT
The MSWA Employment Support Service is the only specialist employment service
for people living with multiple sclerosis in Western Australia and can help you to
stay in your current job or find employment in the open labour market.
LEIGH MCCAFFREY, EMPLOYMENT SUPPORT SERVICES MANAGER: 1300 865 209
2

WELCOME
Welcome to the winter 2022 edition of Bulletin. We hope you enjoy the news, stories and
service information we have brought to you this quarter.
CONTENTS
FROM THE DESK OF THE CEO. ...... 4
GENERAL MANAGER STRATEGIC
SUPPORTS AND RESIDENTIAL
OPTIONS ........................... 5
CHIEF CLIENT OPERATIONS
OFFICER – MEMBER &
CLIENT SERVICES. .................. 6
RESEARCHER IN FOCUS:
PROFESSOR BRUNO MELONI
ON HIS STROKE RESEARCH ......... 7
RESEARCH ROUND UP. .......... 8-10
TAKE PART AND
REAP THE BENEFITS. ............... 11
SEEING BEAUTY IN
DAMAGED WINGS ............... 12-14
THANK YOU ROS HARMAN. .........15
THANK YOU FROM THE
COMMUNITY SUPPORT TEAM .......15
FAREWELL SUE SHAPLAND. ..... 16-17
INTRODUCING MSWA’S
EMPLOYMENT SUPPORT
SERVICE. ........................18-19
WORKING TOWARDS
HIS RECOVERY. ................. 20-21
“LOVE YOURSELF,
LIKE KANYE LOVES KANYE”. ....... 22
THE GIFT OF PAUSING ............. 23
TOP TIPS FOR STAYING MOTIVATED
OVER WINTER . .................... 24
MY LIFE AT MSWA ................. 25
MEET THE MSWA MEGA HOME
LOTTERY 22A WINNERS! ........... 26
A STEP UP SUCCESS . .............. 27
VOLUNTEER UPDATE .............. 28
CAMPS UPDATE ................... 29
HEALTHY EATING
THIS WINTER. .................. 30-31
PAIN AND MEDICATIONS. ....... 32-35
OUTREACH HAPPENINGS:
ALBANY. .......................... 36
TREENDALE GARDENS
OUTDOOR UPGRADE .............. 37
BOOK YOUR STAY AT
MARGARET DOODY HOUSE . ....... 38
SUBMIT YOUR ARTICLE TO US. ..... 39
FEEDBACK & COMPLAINTS. ........ 39
3

FROM THE DESK
OF THE CEO
MELANIE KIELY
CEO
It is hard to believe it has been
over five months since I joined
MSWA. In so many ways it feels
like it has been so much longer
and in others, it has simply flown.
In all respects, it has lived up to my
expectations. The Clients I have
met who have been so open, warm
and sharing, and our staff who
are so unbelievably committed to
our Purpose of supporting people
with neurological conditions to live
their best lives. Our goal is to be
the difference that allows them to
do that.
Whilst COVID-19 has become the
new ‘normal’, we cannot forget the
impact it has had on everyone since
it started. I am incredibly grateful
to all our staff, Clients and their
carers, who have adapted to stricter
measures, staff shortages and even
lockdowns. I can see the fatigue on
everyone’s faces and I hope many
get to take a break and catch their
breath, especially as travel is now
a little easier and freer. To all of
you who are getting to meet up
with family and friends you haven’t
seen for so long, I wish you a
wonderful reunion.
This last period has also brought
significant change. We have said
goodbye to both Ros Harman our
President and long serving Board
member, and Sue Shapland who
has been a leader at MSWA for
almost 20 years. Both have gone
to focus on family and in Sue’s
case, to ponder her next adventure.
Senior Manager, Administration,
Property Development & Facilities
Andrea Taylor departed MSWA at
the end of July, after 20 years with
the organisation. Every MSWA
residential facility you walk into
has Andrea’s mark on it and she
should be so proud of everything
she’s done.
We thank them on behalf
of our Clients, research
partners, clinicians and
staff – locally and nationally.
They are part of the proud
history of MSWA.
There are many exciting
developments and changes
coming, including us welcoming a
number of new staff and taking on
greater challenges.
Nicola Washington (who has led
our community services teams for
the last few years) is taking on all
our Client operations (including
Residential) and Vanishree Chetti
is stepping up to run our clinical
operations, reporting into Nicki.
In addition, we have promoted a
dedicated Quality, Safety and Risk
Manager Alison Cox, who will be
reporting to me and will focus on
taking an independent role from
operations to make sure we deliver
safe and high-quality services.
I will also be appointing a dedicated
People and Culture Executive to
ensure we can attract, retain and
develop our workforce and people.
As we move ahead to implement
our new people centred strategy,
focused firmly on our Purpose,
I look forward to listening to our
Clients and staff to understand
how we build on the great work our
teams already do and make an even
greater impact for the people we
are here to support.
I hope you brave the cold weather
well, keep eating well, (soups,
roast veggies and my homemade
almond apple crumble are my
favourite), and don’t forget to keep
moving as much as possible – it is
not only good for you but it helps
to keep you warm. I am finding it
so hard to get up in the morning to
exercise when it is so cold and dark
that I have started contemplating
sleeping in my exercise clothes!
Take care and thank you for your
ongoing support of MSWA and all
that we are trying to do.
4

STRATEGIC SUPPORTS
AND RESIDENTIAL
OPTIONS
SUE SHAPLAND RN, BN, MSCN
GENERAL MANAGER
STRATEGIC SUPPORTS AND
RESIDENTIAL OPTIONS
“Don’t cry because it’s over.
Smile because it happened.”
Dr. Seuss
Well, this is my last Bulletin post as
I ride off into the sunset after 19 ½
years at MSWA. Wow! Where did
those years go?
It is with some sadness but great
pride that I leave MSWA. When I
joined, we were a much smaller
organisation and in need of change or
we wouldn’t survive financially – and
look at us now! Our income streams
were overhauled, and the MSWA
Mega Home Lottery became the
real game changer for us – injecting
much needed funds to support our
Clients, plug the gaps (pre-NDIS)
and grow our services and footprint
to meet the diverse range of needs
from the newly diagnosed through
to those with high care needs.
I was here for the roll out of many
of the MS disease modifying
treatments, growing from four
treatments in 2003 to 13 now, and
our MS nursing team was there
providing vital tailored information
and support including in-hospital
clinics, which all continues now.
As we became more successful,
we were able to grow our fantastic
allied health team in the absence
of government funding, adding in
counselling, speech therapy and
dietetics, supporting our holistic
approach. In addition, we added
new locations for our Outreach and
Services Centres, bringing supports
closer to home.
We have increased our highsupport
accommodation places
from seven (in 2003) to 52 (in 2022)
and from one location to five.
Building these beautiful homes has
been a highlight for me and there’s
more to come.
I was here to see the WANDIS
and NDIS projects roll out and
can remember very well what a
difference this has and does make
compared to the lack of funding and
supports so many Clients struggled
with before the Scheme came about.
Whilst there are still some issues with
the Scheme overall it’s life changing
for many and secures a future where
changing care needs can be met,
and equipment guaranteed.
We have recently completed our
first re-registration audit for the
NDIS and are very pleased with the
results. Some minor improvements
were identified but no major nonconformities,
which was great news.
I would like to thank all our staff
and the Clients who supported the
process, took part in the interviews,
and had their documents reviewed.
Quality and Safety are always high
on our agenda, and these are
an ongoing focus for us as a
service provider.
I am also very proud of the
ongoing funding we invest into
research. Research provides
hope, opportunity for greater
understanding of conditions and
how and why people are affected,
new treatments, and hopefully
cures and or prevention.
We continue to support several
quality research teams here in WA, as
well as nationally through MSA, and
this benefits our Clients, their families
and our staff who get involved.
As I leave, I just want to say I
have been touched by so many
wonderful and inspirational Clients
over the years; their humility and
resilience in the face of huge
challenges has often grounded me
and encouraged me to not sweat
the small stuff and be grateful for
my health and family!
Thank you to all the wonderful,
hard-working staff, who are really
dedicated to supporting others
and doing their best, it’s not always
easy. Their support and flexibility,
particularly in the face of COVID-19
and the ongoing upheavals that has
created, are greatly appreciated.
A huge thank you to my Residential
and Respite teams who do a
fantastic job with our Clients and
ensure they are well cared for in
their new homes.
I would also like to thank my wonderful
family who have supported me
through long hours and after-hours
interruptions over the years. They
have also been MSWA volunteers
on many occasions, from setting up
Beechboro Lodge and landscaping
the grounds, through to roles in the
Bike Rides and Step-Up events.
So, it’s goodbye from me and
thanks for the many proud
memories.
5

MEMBER &
CLIENT SERVICES
NICOLA WASHINGTON
CHIEF CLIENT OPERATIONS
OFFICER
Welcome to the winter
edition of our Member &
Client Services Bulletin.
We have certainly been
feeling the colder weather.
As I take a breath to reflect on
what has been a roller coaster
year with many challenges being
thrown at all of us, including our
fight through COVID-19, I can’t help
feeling so proud of the people that
work here at MSWA. The ongoing
ability to pivot and change through
the unknown and still maintain a
clear focus on our service delivery
is, quite frankly, remarkable. Our
staff have faced some incredible
challenges and have really pulled
through by supporting each other
as a team. I want to thank them for
their incredible work and support
for each other during this period.
I am excited about the next horizon
and getting to work on how we can
improve on our delivery of services.
We will be starting a deeper dive
discovery into what you, our Clients,
need and what you want, and how
we can improve on our service
delivery to you during different
stages of your journey. This will be
exciting work to gain a much clearer
insight into what we do for you in the
future and provide a clear strategy
on what we need to execute. I look
forward to starting this work and will
keep you across how we proceed.
On page 11 you will find an article
from Geoff Hutchinson on the
importance of NDIS plan utilisation.
Please take the time to review, it
is important to understand what
happens to your unused funds.
It will be interesting to see what
changes we will see to the NDIS
under a Labor Government. Watch
this space and let’s hope we see
some of the issues addressed and
action in the right direction.
On page 32 is the final instalment
in our Pain and Pain Management
series. This time the focus is on
medication. Thank you to Bronwyn
Innes for the series of articles she
has contributed over the past year.
Our Client Forum was held on 5
July and we had a great turnout.
As always, it was fantastic to hear
from our internal and external
experts about the latest in research
and technology and how this is
benefiting people living with a
neurological condition.
Finally, I would like to take this
opportunity to say a fond farewell to
Sue Shapland and Andrea Taylor.
As you will know, both Andrea
and Sue have been with MSWA
for nearly 20 years and have
contributed amazingly to the
success of the organisation. The
growth in services and the ability
to provide more supports to people
with neurological conditions is only
possible with dedicated people
like Sue and Andrea and they can
be truly proud of what they have
achieved. Au revoir for now Sue
and Andrea.
As always, your feedback is
important to us so if you have
anything you would like to
share please contact us on
feedback@mswa.org.au or
call 6454 3173.
Stay safe.
MSWA Client Forum 2022
6

RESEARCH
RESEARCH IN FOCUS:
PROFESSOR BRUNO MELONI ON HIS STROKE RESEARCH
MSWA is proud to be funding this important West Australian research that will potentially
provide the first effective treatment to minimise the damage that occurs in the early phases
of stroke. We went straight to Professor Bruno Meloni, who heads Stroke Laboratory Research
at the Perron Institute, and Department of Neurosurgery, Sir Charles Gairdner Hospital
(SCGH) and spoke with him about his journey and research so far.
“My passion for research started
in 1985 after obtaining a Research
Assistant position in a parasitology
laboratory in the Veterinary School
at Murdoch University. I was hooked
from day one, so much so that I
completed an Honours degree, PhD
and a post-doctoral study with the
team at Murdoch University.
“In 1996, I was successful in
obtaining a second post-doctoral
position within the Department
of Neurosurgery at SCGH, with the
objective to establish a research
laboratory with neuroprotection as
its central theme, which I did with
the head of Stroke Research, Clinical
Professor Neville Knuckey. The
laboratory was, and still is, based at
the Perron Institute.
“Over the next 25 years, my research
centred on understanding the
mechanisms involved in brain injury
after stroke and the identification
of potential neuroprotective
targets to aid the development
of new therapies to reduce
injury. Through this research our
laboratory identified a novel class
of neuroprotective peptides known
as cationic arginine-rich peptides
(CARPs), which have great potential
to be developed into therapeutics
to minimise brain injury after
stroke and related conditions, as
well as chronic neurodegenerative
disorders.
“Currently, my focus is to progress
the application of a CARP developed
in my laboratory, known as R18,
as a therapeutic to limit the brain
injury that occurs in stroke. Stroke
is the current leading and growing
cause of acquired neurological
disability and second leading cause
of death worldwide. Each year,
approximately 56,000 Australians
will suffer new or recurrent strokes.
To make matters worse, at present
there are no clinically available
neuroprotective drugs to minimise
brain injury after stroke.
“To help progress the development
of R18 as a neuroprotective
therapeutic, a spin-off company
from UWA and Perron Institute was
established. The company, Argenica
Therapeutics, listed on the ASX
in June 2021, and renamed R18,
ARG-007.
“To date both in vitro and in vivo
(preclinical) safety and toxicity
assessments of ARG-007 have been
encouraging, and part of these
studies have been supported by
MSWA’s funding commitment to
West Australian research. It is hoped
a Phase 1 human safety study will
commence later in the year. Planning
is also under way for a Phase 2 study
in stroke patients. It is anticipated
that ARG-007 therapy could be given
to stroke patients by ambulance
paramedics before reaching
hospital, as early intervention
provides the best opportunity to
minimise brain tissue damage,
and allow more patients to benefit
from clot dissolving treatments or
removal of the clot via a catheter.
Importantly, early intervention
with ARG-007 could be particularly
beneficial for people in rural and
remote areas before transportation
to a metropolitan hospital.
“I am also optimistic that ARG-007,
due to its unique and multiple
neuroprotective
mechanisms
of action, has promise as a
neuroprotective therapeutic for
other acute disorders such as
traumatic brain injury, and chronic
conditions such as Alzheimer’s
and Parkinson’s disease. In the
meantime, the demonstration
that ARG-007 can improve patient
outcomes after stroke will be a
career defining achievement and
represent a bench to clinic research
story that started 37 years ago in a
parasitology laboratory.”
To find out more about the
projects MSWA is funding, head
to mswa.org.au/news-research/
commitment-to-research
7

RESEARCH
RESEARCH
ROUND UP
SUE SHAPLAND RN, BN, MSCN
GENERAL MANAGER STRATEGIC SUPPORTS
AND RESIDENTIAL OPTIONS
FROM MS AUSTRALIA
Read more at msaustralia.org.au
Predictors of employment after
the first episode of demyelination
MS predominantly affects working
age adults and has effects on many
facets of life including family, work
and social interactions. PwMS face
significant employment-related
challenges and understanding and
preparing for these may improve
later employment outcomes.
This study was led by Professor
Bruce Taylor and his research
team at the Menzies Institute for
Medical Research in Tasmania, as
well as the AusLong group, which
continued the work of the MS
Australia-supported AusImmune
study. Researchers set out to
examine factors affecting the longterm
pathways of employment
outcomes. Many employment
studies are short term, but this
study followed participants for
11 years after their first relapse to
help us understand why these
employment challenges occur in
people with MS over time.
/ Researchers followed 207 people
for 11 years after their very first
episode of central nervous system
demyelination (FCD)
/ From the data collected,
researchers identified four
distinct pathways of employment
that are likely to occur after the
first relapse
/ Understanding the likely
pathways for people with MS
allows better management
of adverse risk factors and
potentially better employment
outcomes
What did the researchers find out
about this group?
Of the 207 participants, 78%
progressed to clinically definite
MS at the 5-year mark and 83% by
the 10-year mark. At 10 years after
the FCD, 74% of participants were
employed and 17% were receiving
a pension, compared to 87%
and 1% at baseline. Additionally,
average work hours had decreased
from 31.6 hours to 21.2 hours per
week. Statistical modelling of the
data identified four employment
pathways:
/ Stable full-time (26.9%)
/ Stable part-time (46.7%)
/ Early deteriorated with early
drop off in employment after
FCD (15.3%)
/ Late deteriorated with gradual
decline after 5 years (11.1%)
8

HERE WE PROVIDE SUMMARIES OF RESEARCH SOURCED FROM WEBSITES IN AUSTRALIA AND AROUND THE
WORLD; WE HOPE IT’S OF INTEREST TO YOU.
READ MORE AT MSWA.ORG.AU/RESEARCHUPDATE
What does this all mean for people
with MS?
This research highlights four
different pathways of employment
status during the immediate decade
following the first demyelinating
event. For people experiencing
other co-morbidities, a higher
disability level in the first 5 years
and a higher number of relapses,
there are indicators that this may
contribute to worse employment
and work-hour outcomes further
down the track. This highlights
the immense value of modern
disease-modifying therapies (DMTs)
to reduce relapses and thereby
potentially having a positive effect
on work outcomes. Recognising
and alleviating the adverse risk
factors for poor employment
outcomes may provide a
mechanism for maintaining people
with MS in the workforce and
harnessing all the benefits that this
brings. That is, reducing relapses,
keeping co-morbidities under tight
management and intervening
early with DMTs. In essence,
maintaining brain health in MS.
Additionally, guides for employers
and employees are now available
on the MS Australia website.
FROM MS TRUST UK
Read more at mstrust.org.uk
Investigating the potential diseasemodifying
and neuroprotective
efficacy of exercise therapy early
in the disease course of multiple
sclerosis: The Early Multiple
Sclerosis Exercise Study (EMSES);
Mult Scler. 2022 Mar 16
This study investigated the effect
of early exercise on relapse rate,
global brain atrophy and secondary
magnetic resonance imaging (MRI)
outcomes.
The randomized controlled trial
(n = 84, disease duration

RESEARCH
When compared to women who
had been pregnant but never
miscarried, women with three
or more miscarriages had a 35%
higher risk of a non-fatal stroke and
an 82% higher risk of fatal stroke.
The researchers also found that
infertility was associated with an
increased risk of non-fatal stroke.
Dr Mishra told Medical News Today
that the mechanism responsible
for the increased risk is an area of
active research. “It could be due to
common risk factors such as genetic
factors, that might predispose
women to both pregnancy loss and
stroke events,” Dr Mishra explained.
“It could also be due to endocrine
dysfunction.”
FROM QIMR BERGHOFER MEDICAL
RESEARCH INSTITUTE
Read more at
qimrberghofer.edu.au/apgs/
Australian Parkinson’s Genetics
Study (APGS) seeking participants
Researchers at the QIMR Berghofer
Medical Research Institute, with
funding from the Shake It Up
Australia Foundation and The
Michael J. Fox Foundation, are
undertaking
ground-breaking
research to help identify genetic
factors influencing risk of
developing Parkinson’s disease.
This research, named the Australian
Parkinson’s Genetics Study (APGS),
will contribute towards the largest
study of Parkinson’s genetics ever
undertaken, the Global Parkinson’s
Genetics Program (GP2).
This revolutionary study will only
be possible with the participation
of thousands of real patients. The
APGS researchers aim to recruit
10,000 Australian residents (male
or female) diagnosed with, and
medically treated for, Parkinson’s
disease and variants that influence
a person’s risk of developing the
condition and its various symptoms.
This will enable the development
of new, more effective, and more
personalised treatments for
the disease.
Participation is strictly confidential,
and all participant information
provided will be maintained
in accordance with Australian
regulations. Eligible people are
now able to participate in the
study. To sign up to the Australian
Parkinson’s Genetic Study, or to
find out more information, visit
geneticsofparkinsons.org.au
FROM MND AUSTRALIA
Read more at mndaustralia.org.au
MND Research Shorts; International
Research Update: June 2022
MND patients suffer breathing
difficulties as the disease
progressively worsens. Detecting
problems with patient respiration
earlier would lead to better
outcomes for non-invasive
ventilation. Dr Nathan Staff and his
team carried out a test to compare
methods to measure respiration to
see which test could earliest detect
alterations to respiration. They
found that measuring overnight
oximetry to detect small changes
in oxygen levels was the most
sensitive manner of determining
early respiration issues in
ALS patients.
10

CUSTOMER ENGAGEMENT TEAM
TAKE PART AND
REAP THE BENEFITS
There are two numbers that every National Disability Insurance Scheme (NDIS) participant
should keep front of mind. The first is Western Australia's average NDIS plan utilisation level
sits at 73%. The second is the average amount that NDIS plan values are dropping according to
the recent NDIS Quarterly Report is 4%. Why are these two numbers important and related?
Because if the NDIA is looking to rationalise dropping plan values, a 27% under-utilisation could
be mentioned as rational, and this will have an impact on participants' future health outcomes.
So, why is plan utilisation so
important?
Because the NDIS has always been
a ‘use it or lose it’ endeavour. Any
funding not spent in NDIS plans
goes directly back to the agency and
participants will be forced to justify
why they should receive the same
level of funding again next year. I
recently spoke to one family whose
son’s plan had been impacted by
underspend and it took them three
years to get back to the original level.
This is a widespread problem and
one that may worsen as the Agency
grapples with a growing financial
commitment to Clients. Therefore,
it’s not enough to have an NDIS
plan, you must actively participate
in managing your funding if you
want to ensure your future needs
are met.
The first thing an active NDIS
participant needs to know is how
much you have in your plan, and
equally importantly how much you
have spent. Each NDIS participant
has access to an online portal via
my.gov.au where you can track your
plan spending. While not as friendly
as some websites, it is a useful tool
in tracking how your plan spending
is going.
Once you know how much you
have left it’s important that you are
proactive if something happens to
your services. Holidays, extended
hospital stays, COVID-19 lockdowns,
and outbreaks are all things that
have the potential to interrupt your
services. If these events happen,
you should work with your service
provider to identify additional or
alternate services to make up the
difference. Equally, if you decide to
take a break from a service or want
more of something, then let your
provider know and they can work
with you to reallocate your funding
to meet your needs.
It should be mentioned that the
flip side of this scenario is also
true. If you notice that your plan is
being overspent due to changes
to your condition or situation, it is
important that you speak to your
Support Coordinator, LAC, or MSWA
to start a change of needs process
and adjust your roster of care to
match your remaining funding.
Unfortunately, in most cases, unless
rectified, once your NDIS funding
runs out it can impact access to
your services.
The world of funding can be
confusing, however your assigned
Client Liaison Coordinator is
able to help you understand the
various scenarios to make sure you
are getting the most out of your
allocated funding. This team also
keeps an eye on funds allocated to
MSWA to ensure you are tracking
ok. Finally, if you are one of a
growing list of participants with
a Plan Manager, it's important
to make sure they are aware of
pricing changes and are active in
helping you to keep in front of your
utilisation and billing.
The good news is that in most
situations, it is relatively easy to
adjust your plan allocations to
ensure appropriate utilisation takes
place. If you identify over/under
spending concerns quickly enough,
you should be able to ensure your
services meet both your current and
future needs and MSWA is available
to help you in this endeavour.
GEOFF HUTCHINSON
MANAGER CLIENT
ENGAGEMENT
11

MSWA CLIENT
SEEING BEAUTY IN
DAMAGED WINGS
MSWA Client Chelsea
Hopkins-Allan painting
a Helena Gum Moth,
Opodiphthera helena,
the first big moth she
ever painted [photo by
Luke Griffiths]
Chelsea Hopkins-Allan is an award-winning artist living and working in Albany. Here, in
response to our questions to her, she talks about painting, creativity, and how – for her –
developing these things was a response to having an undiagnosed rare neurological
condition called hypokalemic periodic paralysis (HKPP).
What is hypokalemic periodic
paralysis?
HKPP in a neurological condition
that impacts the regulation of the
potassium levels in your blood.
Potassium in your blood needs
to be kept within a certain range
for your muscles to work properly
but various factors can cause it to
temporarily drop too low.
There are different types of periodic
paralysis and related conditions.
What symptoms led to your
diagnosis?
I had episodes of muscle weakness
and paralysis. With HKPP, weakness
can vary from mild to quite severe,
lasting hours or days at a time, and
can mean you can't walk without
your legs giving out or lift your arms
and many basic things can become
difficult. Paralysis is like fainting but
not losing awareness – you can feel,
hear and see, and it can last hours.
It is incredibly frustrating and quite
frightening, especially when you
don't understand the cause. Fatigue,
mental fogginess and feeling unwell
generally accompany the muscle
symptoms (as your electrolytes are
severely out of whack). I would wake
up every morning feeling like I had
a bad hangover! Every day was a
struggle to manage the most basic
things. Keep in mind – this is without
treatment, so getting a diagnosis
is vital!
There are also multiple triggers
that lower potassium in HKPP,
that you need to know about to
manage. (NB: These symptoms can
vary somewhat for different people
with HKPP. Some people only
get paralysis in one part of their
body for example or get less
frequent episodes).
Despite seeing over thirty doctors
and specialists and a taking a
multitude of tests, I didn’t get a
diagnosis for over ten years. This
meant I didn't get any medication,
treatment, management support,
relevant allied health services,
mobility aids or NDIS. Many doctors
told me it was purely psychological,
despite the severity of my symptoms
and my insistence that this was
not the case, so it was a difficult
ten years. I finally got a diagnosis
last year and my life is changing
dramatically for the better!
12

What was going on in your life
when you first became unwell?
I was 24 years old and working as
an environmental scientist for a
hydrogeological consultancy in
Perth. I had a full life and a healthy
lifestyle. Over the years, I had been
to the GP repeatedly about my
fatigue and mental fogginess. But
after a few basic tests – like iron
and thyroid – they would tell me I
was fine, that I must be depressed!
Even though I kept telling them it
was the fatigue causing difficulties
and worries in my life, not the other
way around.
Over the next few months, I kept
feeling worse and bit by bit I had
to reluctantly drop all my activities
just to maintain my job. My health
continued to decline and eventually
I lost my job as I was too sick to
work in the office, let alone pass the
necessary medical for upcoming
field work. One weekend around
that time, I collapsed after trying to
go for a short walk. That's when the
medical tests, hospital and doctors’
visits got underway.
What led you to painting?
One of the earlier tests I had to get
was an MRI. Inside the machine –
with the rotating thump thump
thump – I needed a focus for my
thoughts. So, I decided to imagine
all the things that made me happy.
I recalled the time I saw a butterfly
wing under the microscope at
university. Their wings are covered
in tiny multicoloured scales, like
artwork in its own right! Just the
memory of this made me feel joy,
awe and wonder, in spite of the
circumstances.
It really helped me. And when
the weeks dragged into months
and then years with so many
tests, doctors, hospital visits and
appointments but no diagnosis – I
kept making them. The paintings
got larger and larger and more
detailed. I wasn't well enough
to work physically and I felt so
exhausted and foggy, making art
when I was able felt like the only
thing I could do. I also started selling
my paintings.
How did your work evolve from
there?
A few years later, I heard a ‘thunk’
on the window and went outside to
investigate. It was a magnificent big
moth. It had shredded wings but
it was still trying to fly. I thought it
was beautiful despite its damaged
wings.
It felt like a symbolic reminder to
have courage, keep fighting and
trust myself that there would be
answers in my health journey. I’d
felt very blamed and shamed by
many of the doctors for my health
problems and this moth was
struggling to fly but still so beautiful.
I decided to make huge moth
paintings of the species that came
to my back door. It was really
difficult given my symptoms at the
time. I had to paint in short sessions.
But I think I had felt so invisible
during all these years of illness, I
wanted to create something bigger
than myself that felt powerful to
me personally. Here were these
incredible creatures coming to ME
when I felt so cut off from wildlife
and nature. It was just a matter of
scale and perception. So I made
them huge, showing all their tiny
magical scales and details.
That night, I decided to make a
symbolic reminder of the butterfly
wing-scales. Not with the intention
of being art, just as a sort of visualpsychological
tool to trigger these
feelings to help me stay positive;
as a reminder that the world is a
magical place.
Butterfly Wing-Scales No.46 by Chelsea Hopkins-Allan
13

Are there ways your art and
neurological condition intertwine?
I know I never would have painted
if I had ‘normal’ health. I wouldn't
have been able to sit still with it for
so long!!! I would have preferred to
do one hundred other things.
I am definitely NOT going to say
this was ‘meant to be’ or ‘all worked
out’. It was terrible, it sucked. What
I do know is, I am glad I found art.
It helped me to survive mentally
(and financially). I took something
difficult in my life and I created, in
spite of it all.
And I am very grateful for all those
who supported me in this in various
ways. I suspect most of them never
knew how much I needed it.
What has art given you?
When I first started painting, I liked
that people asked me about my
art instead of my health or showed
me pictures of cool moths they
found (and collected dead ones for
me – haha!). Art also gave me more
connection to community through
exhibitions and online via social
media with collectors, creators and
nature lovers all around the world.
This gave me a sense of extended
community when I was often stuck
at home on my own. It also gave
me some escape from reality and
helped me cope with my symptoms.
Spending a lot of time in hospitals
and waiting rooms also gave me a
huge appreciation for what a bit of
art and colour can do to your mood
in a space.
What would you share with fellow
Bulletin readers about creativity?
I loved a recent quote from famous
art critic, Jerry Saltz. He said, “Artists;
you do know, don't you, that your
mistakes are your style”. To me, I
apply this to disability: if you have
limitations that impact how you do
something, maybe try to work with
them and make them part of your
work and your style.
There are a million ways to be
creative, and a million niches or
ways to channel your interests,
insights, need for self-expression or
to have a voice within this. Painting,
drawing, sculpture, music, singing,
crafts, textiles, dance, theatre,
writing, poetry, flavours, scents,
fashion…
You don't need to be ‘good’
at something. Creativity is a
process of discovery. You can be
as conventional and traditional,
or unconventional as you want.
Experiment widely or find a niche.
Creativity can also be a way to
engage in something you maybe
can't do in the same form anymore.
It could be a social connection, a
connection to your passions, or
both. Maybe there’s something you
feel strongly about where you want
to share your insights, communicate
and make your voice heard. Make it
what you need.
I believe humans are innately
creative and our struggle for
survival and self-understanding is
a critical part of this process – look
at the massive scope of art and
creativity in all forms across culture
and human history! We are a part of
that and it’s no different in ‘modern
times’, we just have more art forms
and more possibilities for expression
available to us.
Do you have a career highlight?
I won a Great Southern Art Award in
2017 for one of my ‘scale’ pieces. As
part of this, I got a fully supported
exhibition by the City of Albany. I
also had the opportunity to have
a mentor for the duration of the
exhibition, Paul Moncrieff. (The
mentorship was one of 50 regional
arts mentorships undertaken
thanks to the ground-breaking
Regional Arts Partnership Program
by the State Government / Country
Arts WA).
I based the exhibition on huge
moths – all local species. Then this
went on tour around regional WA.
Describe your studio space.
I am lucky there is a big shed
in this current rental house. I
sectioned it off with a drop sheet
and a shelving unit. I painted MDF
boards with white paint and, with
help, stuck them up to one wall. It
does get pretty hot and cold being
uninsulated, which affects my
health, so I can't always work out
there. In which case I get computer
admin done or can make small
things at the kitchen table, but this
is more limited due to the mess
factor. I finally got my power chair
last week so it should make a huge
difference in how long I can work.
I'm really looking forward to having
a space to work in that is a bit easier
for me health-wise in the future.
My two dogs, Jazz and Django,
and my little parrot Opal [pictured
above] are constant companions!
14

THANK YOU ROS HARMAN
After 18 years on the MSWA Board, with 18 months of those as President, Ros Harman has
announced her resignation from the Board and the position of President.
During her time on the Board,
Ros, who has also been a Client of
MSWA for 34 years, has contributed
significantly to our Purpose
of empowering people with
neurological conditions to live their
best lives.
The Board and the organisation
thank Ros for her service and
contribution and wish her very well
for the future as she focuses on her
family and her health.
Mr Horst Bemmerl, MSWA Board
Director, steps in as acting President
until further notice.
THANK YOU FROM THE
COMMUNITY SUPPORT TEAM!
Like many organisations across Perth dealing with
the implications of COVID-19, we understand there
has been a lot of disruption to our services. We would
like to say a big thank you for your patience as we
navigate through unprecedented times – we have
received a great deal of support and understanding
from you.
There has been a lot going on behind the scenes –
all of our staff have been trained how to correctly
‘don and doff’ full PPE, including gowns, masks,
glasses, face shields and gloves. We have been
issuing supplies of regular PPE – all to keep our staff
and Clients as safe as possible.
For the past three months we have been conducting
‘RAT surveillance’ – we are regularly supplying our
staff with stocks of rapid antigen tests and they
have been testing and recording the result every
three days. Our staff have been very committed to
this, which has been a key COVID-19 management
strategy for our team.
DENISE VOGELS
COMMUNITY TEAM LEADER NORTH
15

Farewell
Sue Shapland
It is with a great deal of sadness and gratitude that we say goodbye to
Sue Shapland, after nearly two decades spent serving people in WA living
with neurological conditions.
Many of you will know Sue Shapland due to the hands-on and
compassionate approach she upheld in all her roles at MSWA over the last
19 years. Not to mention the valuable and vital written contributions she
has made to publications like Bulletin, earnestly ensuring Clients and their
carers are across the latest neurological research ,and providing regular
information and updates.
Not only is Sue incredibly well-respected nationally and in WA as a
professional in the disability sector, she is an incredibly giving, kind and
committed person, who has contributed so much to the growth of MSWA’s
services and support.
On behalf of our Clients, staff, volunteers and supporters past and present –
‘Thank you, Sue!’
16

17

EMPLOYMENT SUPPORT
INTRODUCING MSWA’S
EMPLOYMENT SUPPORT SERVICE
MSWA is excited to add the Employment Support Service to our service portfolio. This is a
free service for Clients to access and is funded by the Department of Education, Skills and
Employment (DESE).
This new service currently supports
Clients living with multiple sclerosis,
and we are working towards
expanding to support other
neurological conditions as soon as
possible.
The MSWA Employment Support
Service is the only specialist
employment service for people
living with multiple sclerosis in
Western Australia and can help you
to stay in your current job or find
employment in the open labour
market.
Currently we service within the
Perth Metropolitan region only.
Our team includes allied health
professionals and an employment
consultant with a specialised
knowledge of MS.
There are two servicing options
within the program:
1) Job Search – Is designed to
support Clients in their journey
to gain open employment and
all the steps to find work and
become ‘job ready’.
This can include resumé and
application writing, assistance
with looking for jobs, and interview
preparation.
To access the Job Seeker service,
Clients need to:
/ Have a diagnosis of MS
/ Have a Centrelink Customer
Reference Number (CRN)
/ Have an NDIS plan or be
commencing the process of
applying for an NDIS plan
/ Be focused on actively looking for
work with support and assistance
2) Work Assist – Is provided by our
allied health team to support
Clients who are at risk of losing
their job due to the impact of
their MS symptoms.
This could include a range of
supports including discussions
about disclosure, workplace
advocacy and support, clinical
interventions including mobility
and ergonomic assessments at
work, and assistance to obtain
workplace equipment via the
Employment Assistance Fund (EAF)
through Job Access.
You are not required to disclose
your disability to your employer to
receive support.
To access the Work Assist program,
Clients need to:
/ Be currently employed and
working 8 hours per week
/ Have a diagnosis of MS
/ Have some difficulty in completing
the inherent requirements of their
work role due to their symptoms
and/or at risk of losing their job
due to their disability
AN AWARD WINNING NEW SERVICE
MSWA’s Employment Support Service was recently awarded a DES 5-star
award at the CoACt conference in Brisbane. This award recognises our
performance against two of the three Key Performance Indicators:
/ Efficiency indicator which seeks to minimise the average times taken
to achieve employment outcome for participants
/ Effectiveness indicator which seeks to maximise the number of
outcomes achieved by participants
Left: Leigh McCaffrey, Employment Support Services Manager, and Carol
Chong, Allied Health Manager, pictured with the DES 5-star award.
18

Peta Flynn and Leigh McCaffrey from MSWA’s new Employment Support Service.
OUR TEAM:
LEIGH MCCAFFREY
EMPLOYMENT SUPPORT SERVICES MANAGER
Leigh is a physiotherapist and has worked within multiple clinical settings across Metropolitan and Regional
Hospitals in addition to working in the NHS in the UK in both England and Scotland. He spent 10 years working
at Multiple Sclerosis Limited in Victoria as the Senior Neuro Physio and as a senior clinician with the Employment
Support Team at MSL before moving to Perth.
PETA FLYNN
EMPLOYMENT SUPPORT CONSULTANT
Peta is an occupational therapist who has previously supported people who have MS with their NDIS goals. Prior
to moving to MSWA she worked in private practice, working with veterans to improve their mental and physical
health for improved quality of life and to re-engage with meaningful employment or maintain their current
employment. This work resulted in Peta receiving the Australian Rehabilitation Providers Association (ARPA)
Best New Starter Award for WA. Peta has a special interest in pain management which is supported by a Bachelor
of Science (Psychology) and Master of Occupational Therapy.
Leigh and Peta joined MSWA in 2021 and have a good understanding of typical MS symptoms and how they
impact Clients on a day-to-day basis in their pursuit of work.
If you have any questions or would like further information, please contact us via email
employment.services@mswa.org.au or phone 1300 865 209.
19

EMPLOYMENT SUPPORT
WORKING TOWARDS
HIS RECOVERY
Ben Chenery outside the
new Nautica Residences
by Seashells, a shortstay
accommodation
concept started and now
managed by Ben.
“People give up on their job because they don’t want to be a burden on other people. They
don’t realise that employment support is an option.”
Ben Chenery’s life changed overnight
when he woke up paralysed on his
whole left side on 1 April 2018. “April
Fools Day,” remarks Ben. “I spent four
months in and out of ICU and state
rehab. They thought I’d had a stroke.”
But nine weeks into his stay in
hospital, Ben was diagnosed with
tumefactive MS – a rare type of MS
where the ‘tumour-like’ lesions are
greater than 2.0 cm in the brain.
It was the beginning of a long road
of rehabilitation for Ben, who loved
kickboxing training, exploring new
areas on weekends, and was a busy
professional with a career he was
passionate about.
After discharge from hospital,
Ben went back to work as General
Manager of Seashells Mandurah.
“I worked a few hours a day at first.
Luckily, 75% of my job is done on
a computer. But the thing was, I
couldn’t type. I’d lost my sense of
grammar. That’s when Leigh came
in to help me sort out my work and
my life.”
CONNECTING WITH
EMPLOYMENT SUPPORT
Employment Support Manager Leigh
McCaffrey has provided Ben with
support for nearly four years – initially
under the banner of Coact, which has
recently transitioned into MSWA’s
Employment Support Service.
“Leigh came down to the office and
started assisting me. He organised
ergonomic chairs, Dragon software,
special noise cancelling headphones.
He was hands-on with my boss and
answered all his questions about how
he could support my recovery. And he
reduced the financial burden of my
employer to keep me in the workforce.”
Ben’s boss, Gareth Thomas, CEO
of Seashells Hospitality Group,
explains, “Knowing that Ben was
supported independently of his
work environment by someone like
Leigh who could work with both of
us to ensure his continued success,
was vital to how we approached the
challenges that were presented for
Ben at work. As an employer, this
was a totally new situation for us,
and we had no idea as to the support
Ben would need. It gets right down
to the chairs he sits on, the mouse
and keyboard he uses, the software
that may help him. Having someone
independently guide Ben also
meant that they were independently
guiding us on what we needed
to do to assist Ben. It helped us to
understand the challenges that were
ahead for Ben.”
Ben affirms, “An employment
support worker is someone you can
turn to who’s not your boss. I met
Leigh for a coffee once a week. He
got me a healthcare card to make
my medication cheaper. He started
the process for NDIS planning.”
Ben’s application to the NDIS was
initially rejected so Leigh secured
other funding to cover 80% of Ben’s
remedial physiotherapy costs. “It
made a big difference,” says Ben.
Leigh explains, “Most Clients we see
are newly diagnosed and we can
access funding for early intervention.
They get support through us and,
over time, they qualify for an NDIS
plan. Then they can use other
services concurrently. There’s a gap
in the early intervention support that
we try to fill.”
This was exactly the situation for Ben.
In December 2019, Leigh messaged
Ben saying, “Merry Christmas – check
your emails!” Unknown to Ben, his
NDIS application had been appealed
and gone through.
20

“By mid-January I had a formal
planning meeting, just like that!”
explains Ben. “It suddenly opened
up funding to services like exercise
physiology, MS groups, remedial
massage, a cleaner.
“I had the support I needed to recover
and to keep working.”
FROM STRENGTH TO STRENGTH
IN HIS CAREER
Over the next 16 months Ben
was promoted to Area General
Manager (Perth) running Seashells
Scarborough Apartments and
assisting two other locations. Then
COVID hit.
“Leigh stepped in again, helped me
set up my home office so I could
work remotely. After that, if I had a
bad day, I could work from home and
still be very functional.”
Once again, his boss was nothing but
supportive.
“Gareth never changed the way he
treated me. I held on to that. I’d ask
if I got stuck. And he made efforts to
double check my grammar and my
writing if required.
“Looking back, I know that keeping
my mind engaged with work was a
massive part of my recovery.”
In March 2021, Ben helped Seashells
to further develop and improve a new
short-stay accommodation business
model called ‘Nautica Residences by
Seashells’. Ben was given full autonomy
to grow and run the new brand.
“I started working on that project from
home to build the new company.
Then we took full management
rights of Hillary’s Harbour Resort
and turned them into a managed
apartment service. Gareth gave
me free reign – from building the
website to the computer systems. He
trusted me to build a new brand and
launch it.”
STAYING CONSISTENT
AND STAYING POSITIVE
Today, Ben’s main lesions are
dormant. Regular Ocrevus injections
– together with physical therapy –
have been of great benefit.
“Late afternoon I get tired, and my
fingers double tap the keyboard. I
take modafinil to help concentration.
There’s less bad days if I keep up the
training regimen.
“My left leg gives me trouble when I’m
walking – the muscles around my hips
lock from the training I need to do.
“The last four years have been about
just getting to where I am now. I’m at
that point in my rehab now that I can
do most things.”
Ben reveals that a previous
relationship broke down soon after
his MS diagnosis. “They didn’t think
I’d walk again correctly because of
the MS. Some relationships survive
a life-altering event, some don’t. But
none of that matters because I’m
with the most amazing woman right
now.”
Ben grins as he speaks about his
partner Bliss, who he first met in
late 2019. “Half the time she forgets I
even have MS! She never makes me
feel funny about it. She jokes that I’m
more functional than most of the
men she’s met!”
He attributes this somewhat to the
fact that he’s a keen home cook
– “Preparing food is like physical
therapy for your hands.”
ADVICE TO THOSE NEWLY DIAGNOSED
Ben says his attitude is what got him
through the tough times. “Don’t give
up. Try your hardest. Your own personal
positivity will open doors for you.
“A lot of people who are newly
diagnosed think they’ll end up in a
wheelchair, but with the right training
you can improve your strength and
be very functional.
“I can’t do kickboxing any more, but
I can still train and do boxercise and
other things that are good for my
health. It’s good if you can train with
like-minded people who understand,
like at MSWA. You don’t have to fake
it if you’re having a bad day.”
Ben explains that he’s had bad
moments where he’s felt broken,
but that it’s how he chooses to act
afterwards that’s important.
“Stop being so proud. Ask for help,
or how will people know you’re
struggling? People will stand up if
they know what they need to do to
help you.”
As well as Employment Support, Ben
accesses Physiotherapy and Support
Coordination services at MSWA.
“Not knowing where to get support
was the biggest hurdle I faced in
the first 6 – 12 months. If it wasn’t for
Leigh, I probably would have given
up on a few things.
“I’ve got my things in place and the
right people around me.”
BEN’S MESSAGE TO EMPLOYERS
Ben is clear when it comes to the
difference that support from his
employer has made to his recovery
and his sense of self. “My boss Gareth
never treated me any different. That
pushed me on.”
Gareth elaborates, “Nothing should
change. If you valued your employee
prior to a diagnosis, why should a
diagnosis of a neurological condition
change anything? There are support
services immediately available to not
only assist your employee in all facets
of their life, but to assist you too as their
employer. Keeping a flexible workplace
to allow for attendance at treatments
etc is vital, but your employee will
appreciate this and will reward you by
maximising their productivity at other
times. Be flexible, treat your employee
as you always did, work with them to
ensure they remain active, productive
and a valued employee, and the
rewards far outweigh the issues.”
Ben adds, “Don’t write off your most
loyal, brilliant staff members by not
working with them to keep them in
the workforce.”
If you’re living with MS and
think you may benefit from
MSWA’s new Employment
Support Service, please contact
employment.services@mswa.org.au
or phone 1300 865 209.
21

COUNSELLING
“LOVE YOURSELF,
LIKE KANYE
LOVES KANYE”
SIDRAH KHAN
MSWA COUNSELLOR
When I hear the words ‘self-care’, the person that first springs to mind is Kanye West! This
rap artist and musical genius (apologies reader if you disagree) is known as the epitome of
self-love, and self-care. I guess it helps when you have an entourage of people supporting
everything you do. For the average Joe it can be harder to take care of yourself or have your
own back when you’re smack bang in the middle of a life change or transition.
In the past few years, we have
experienced an incredible amount
of collective change. Between
COVID-19 lockdowns and changing
isolation periods, to mask-on or
mask-off mandates, and having
different devices that we either
must shove up our noses or spit into
for a rapid antigen test. Maybe you
have a loved one who was recently
diagnosed with a neurological
condition, or you yourself have had
to change medications or doctors.
Some of you may have had to say
goodbye to old therapists, support
staff, and say ‘hello’ to new ones.
Depending on the circumstance,
change can feel scary, and
overwhelming. Being able to take
care of you during these moments
is crucial to navigating the tide.
So how do you look after you, when
the change around you doesn’t
stop, or when you’re hit with
unexpected news?
For a lot of people, being able to go
back to basics is important. Selfcare
isn’t always about doing what’s
‘healthy’, instead self-care can
be anything you need to do that
reminds you of who you are and reconnecting
with different parts of
your identity. Maybe for you it’s the
dancer in you, the wine enthusiast,
the inner traveller, the diehard
Star Trek nerd, the painter, or the
garage sale enthusiast. When we
think about self-care the question
is not ‘what can I do to be healthy?’
But rather, ‘what can I do to show
some love and attention to the
part of myself that makes me feel
like me?’
For some people this is as simple
as turning on your favourite song,
and dancing around the house
pretending to be ‘Baby’ from Dirty
Dancing, buying a coffee rather than
making one at home, embracing
your spontaneity and going for
a walk in a different location, or
saying yes to a movie marathon
at midnight with no interruptions.
Whatever it is, change is a constant,
and being able to ground yourself
in what nourishes you and reminds
you of who you are, can make the
ride a little easier to bear.
So now it is your turn.
What parts of you need
attention this month?
And what do you need to
do to show some love to
those parts of you?
What does it mean for you
to love yourself like Kanye
loves Kanye?
22

THE GIFT
OF PAUSING
SANDY SUVERIJN
MSWA COUNSELLOR
Maybe you have taken a moment for self-care when you’ve felt tired, or have taken a day off
during the week where you do something fun and feel rejuvenated. Have you tried creating
a pause, a small mindful moment of rest in your busy day?
Maybe you’ve heard of mindfulness
or grounding techniques, or read
about the research that suggests
its role in helping to manage stress.
Maybe you’ve even tried practicing
mindfulness.
We live in a fast-paced world, with
many stressors, and sometimes we
forget to check in with ourselves.
A practice such as mindfulness
can help slow us down, develop
stability and focus some attention
on ourselves. If we can pause and
notice the flow of life as it is and let
it come and go – just observing and
noticing – this may assist with some
of our responses. In times of distress
we may be overthinking, feeling
overwhelmed, or overreacting.
A pause can help us to anchor
ourselves and provide the needed
space to calm our minds. We then
can consider our choices before
responding.
Try to pause in your day, take a
breath, acknowledge your thoughts
and feelings. Let them be, to
observe, meeting the moment as
it is. Be fully present, be aware of
where you are, what you are doing
without criticism or judgement.
Be compassionate with yourself as
the moment comes and goes.
Try building into your day the habit
of stopping. It may require you to
practice the pause, to reconnect
with yourself. If we practice it three
or four times a day, it can help
build the habit of slowing down.
Small mindful habits that you can
practice daily:
/ Holding a mug of tea in both
hands and feeling its warmth.
Do not rush drinking it, enjoy the
aroma, take small sips and take
your time tasting each mouthful.
/ Put on a piece of music and give
it all your attention. Listen to the
words and try to pick out all the
different musical instruments
that are being played.
/ Pat your pet. If you have a dog or a
cat, or other furry friend, run your
fingers through their fur. Feel
their warmth and the softness of
their coat.
/ Wherever you are – lying, sitting,
or standing – feel what is under
you, such as your feet on the floor
or how your body is contacting
the chair or bed. Take note to take
slow deep breaths and relax your
body into it.
MSWA has a counselling service
that can assist you with the many
stresses of life and support you with
the mindfulness and grounding
techniques discussed in this article.
To make an appointment please call
9365 4836.
“Mindfulness is about training
yourself to pay attention in a
specific way. When a person is
mindful, they: (1) focus on the
present moment, (2) try not to think
about anything that went on in the
past or that might be coming up in
future, (3) purposefully concentrate
on what’s happening around them,
[and] (4) try not to be judgemental
about anything they notice, or
label things as ‘good’ or ‘bad’”
(Moore, 2019).
23

MSWA CLIENT
TOP TIPS FOR
STAYING MOTIVATED
OVER WINTER
The cold mornings and shorter days can start to take their toll in winter. We asked some of
our Clients for their top tips for staying active and motivated:
I am inspired every morning by the thought of my first hot cup of tea and by my dog asking for her
breakfast. This always gets me up and going.
Lesley Murray
I celebrate that I’m able to get out of bed when it is cold by doing the Hokey Pokey every day, and if you
know your left from your right, you know you’re cognitively ok!
Ian Cordingley
My hands get really dry over winter which stops me from doing things I love, so to get me through I use
Dermal Therapy Hand Sanitising Cream – two products in one for your handbag.
Jasmin Franklin
I wear my bed socks when I go to bed at night which keep my feet toasty and warm, and sometimes I have
been known to wear them all the next day too. Shhh don’t tell anyone!
Teresa Killeen
Every morning I go across the road to the retirement village and walk a dog who belongs to a lovely
91-year-old lady.
Warren Black
Go and visit the grandkids – that gets you going!
Stephen McKay
My head and brain absolutely love the cool weather as no fatigue and befuddlement! But my body is not
the best in the cold weather. It's very stiff and sore in the mornings. I stretch in bed and again as soon as my
feet hit the floor, using the bed to help support me until I can loosen up. Over winter I also take advantage
of the massage therapists at Wilson every fortnight to keep me limber.
Tracey Hockey
24

MY LIFE AT MSWA
Having recently resigned from the Board, Ros Harman reflects on her journey with MSWA
so far.
I was diagnosed with multiple
sclerosis in April 1988. My neurologist
suggested I join the MS Society as
it was called then. Later it became
MSWA.
I mostly did physio, which I still do
today, and I’m sure it has helped me
remain able to live in my own home
independently.
On the first day I joined, I was
introduced to Greg Brotherson, who
on hearing I was an English teacher
in a high school suggested I start
writing articles for the MS Bulletin
magazine. This is something I have
continued to do until this day.
I was very pleased to meet Greg
right at the beginning of my journey
with MS, as he was an inspiration
to me and many others. In 2004
he suggested that I nominate for
a position on the Board of MSWA
which I did, and I have been there
ever since. I have just recently
resigned.
Over the years I have met a lot of
interesting people. In physio I met
other people with MS and some of
them became good friends. I am
still friends with Trudi Fay, whose
children played with my daughter
Eleni when they were young.
Trudi and I have a lot in common
and still enjoy getting together for
a chat from time to time. Trudi’s
husband Michael is now also on the
Board of MSWA.
On the Board I met many
interesting people, some with MS
and others without. One of those
was Bill Hassell, who often butted
heads with me as he was a former
Liberal politician and I am a hard
and fast Greenie. Nevertheless, we
are friends and I was inspired by his
dedication to MSWA and the Board.
Over the years I have also met many
different staff members, including
physiotherapists and occupational
therapists who have helped me
with advice about equipment. I
have also met community nurses
who have more general advice
about my health. I have been lucky
in one sense in that while my MS
has progressed, I am still able to live
independently at home on my own.
I am convinced that meeting people
who share the same condition that
I do has helped me immensely.
Being able to talk to others who
have an understanding of a similar
condition is beneficial in so many
ways.
When I first joined the MS Society,
its fundraising was mostly the $3
raffle with a car as first prize. I have
been buying these tickets forever
and have never won anything! Soon
after Marcus Stafford became CEO
we started doing the Mega Home
Lottery which has been a very
successful source of income for
MSWA, providing finances to fund
services to our Clients. As a Board
member I wasn’t allowed to buy
those tickets, so of course I never
won anything there either!
I will always be very
grateful to MSWA for
providing me with all
sorts of services and
physiotherapy. It is so
good to be part of a
community that cares and
understands when you are
living with a disease.
ROS HARMAN
MSWA CLIENT
25

BRAND, MARKETING & SALES
MEET THE MSWA MEGA HOME
LOTTERY 22A WINNERS!
A big thank you to everyone who purchased tickets in the recent MSWA Mega Home Lottery!
On Friday, 18 March, MSWA
announced over 17,300 lucky prize
winners, including three incredible
seaside home winners, making
three instant millionaires! Our
Grand Prize winner, Lauren (ticket
number 27,230) received the lifechanging
call from MSWA CEO
Melanie Kiely and MSWA General
Manager Supports and Residential
Options Sue Shapland letting
her know that she’d just won the
incredible Grand Prize, a stunning
$3.2M Webb & Brown-Neaves home
in City Beach plus $500,000 in cash!
The lucky Early Bird prize winner,
Matt (ticket number 229,887) has
won our first ever holiday home
in Cable Beach, a $50,000 travel
voucher and a Toyota Rav4.
The Super Early Bird winner, Paul
(ticket number 102,700) has won an
incredible $1.3M North Fremantle
apartment, with spectacular 180
degree ocean views.
Thank you once again to everyone
who purchased a ticket.
The MSWA Mega Home Lottery
is MSWA’s largest fundraiser. The
support helps us to provide much
needed services, high support
accommodation and respite, as
well as funding for vital research for
a cause and a cure for people living
with neurological conditions.
Join the MSWA Platinum Club today
and ensure you never miss out on a
ticket! mswalottery.com.au/mswaplatinum-club
Above: Super Early Bird winner
Paul and MSWA CEO Melanie Kiely.
Top: Grand Prize winner Lauren
(centre) pictured with her mum
and sister, and Melanie Kiely (left)
and Sue Shapland (right) from
MSWA.
26

A STEP UP SUCCESS
Sunday, 19 June saw the 15th annual Step Up for MSWA take place at Central Park Perth.
We were delighted to welcome just over 1,000 participants to climb the stairs. This included
groups taking part in the Mini Climb, One Up, Double Up, Multi Climb, and also the Protective
Services and Front Line Workers Challenge!
It was wonderful to have a large
team from MSWA also take to the
stairs this year, with team captain
and MSWA Client Tracey Hockey
completing the Double Up! An
amazing achievement!
A huge $232,830 has been raised so
far to support Western Australians
living with neurological conditions.
Our Highest Team Fundraisers, and
loyal MSWA supporters, The Ruggiero
Foundation, raised $35,000.
A big thank you to all who climbed
and all of those who came along to
support on the day.
Join us next year at Central Park
and challenge yourself to reach
new heights, whilst making a real
difference for those living with
neurological conditions.
SAVE THE DATE: 2022 MSWA OCEAN RIDE
The 2022 MSWA Ocean Ride is just around the corner, coming up on Sunday, 20 November. Keep an eye
out on the website, where you can register your interest soon, and be the first to know about this year's
Stationary Cycle Challenge! Visit MSWAOceanRide.org.au.
27

VOLUNTEERING, CAMPS & RECREATION
VOLUNTEER UPDATE:
NATIONAL VOLUNTEER WEEK 2022: BETTER TOGETHER
MSWA Volunteers play a vital part in supporting our staff and Clients through several different
roles across the organisation, from Activity and Kitchen Assistants to dog walking and social
support. At present, we have more than 30 regular, ongoing Volunteers working across our
Outreach centres and high support accommodation facilities, as well as in Clients’ homes.
These individuals are a valuable resource, providing many of our Clients the opportunities for
one-to-one and group social interaction.
Our Volunteers run art classes,
organise nail spa treatments,
assist with puzzle and board game
challenges and sometimes compete
alongside Clients in indoor bowling
competitions, all in the name of fun
and promoting social connections.
We have eight Peer Support
Volunteers in our Counselling
team, who facilitate peer-run coffee
groups, which provide critical
connections and support for our
Clients. Having gone through a
comprehensive training program,
these Volunteers are equipped with
vital skills and knowledge to provide
a safe space for others.
They are at times, some
of the first people newly
diagnosed Clients reach
out to for support.
In addition, we also have numerous
Volunteers who assist at our
fundraising events, such as Step
Up for MSWA and the Ocean Ride,
with registrations, bib collection,
refreshments as well as stair and
road marshal duties.
Our Volunteers work together with
staff to ensure the days’ activities
run smoothly. We therefore make
it a point to tell our Volunteers how
special they are whenever we can.
This year’s National Volunteer
Week (16 – 22 May) focused on
the theme of ‘Better Together’,
which aptly centres on the power
of volunteering to bring people
together, to build communities
and to create a better society for
everyone. We celebrated this year’s
event with intimate celebrations at
the Volunteers’ places of work.
Some were greeted with a special
morning tea, others with gifts and
tokens of appreciation. From all of
us at MSWA, thanks for being a part
of our Team!
MALA PADMANATHAN
VOLUNTEER AND CAMP
COORDINATOR
VOLUNTEER OPPORTUNITIES AT MSWA
We currently have a number of opportunities to fill. If you, or someone you know, would like to be
a part of the MSWA Volunteer Team, contact Mala Padmanathan, Volunteer and Camp Coordinator
at 6454 3184 or Mala.Padmanathan@mswa.org.au
Admin Assistant (3 positions): Rockingham, Kelmscott, Vasse
Kitchen Assistant (2 positions): Wilson, Beechboro
Activity Assistant (2 positions): City Beach, Albany
Gardener (2 positions): City Beach, Beechboro
28

CAMPS UPDATE:
CATCHING UP WITH OUR CARERS
As you know, our Camps program has been limited since the easing of COVID-19 restrictions
came into effect.
In the spirit of being flexible and
adaptable, we planned a couple
of Carers Lunches in place of our
usual Carers Camp, which had been
planned for April.
While these outings did not replace
the Camp experience, they did offer
the opportunity for Carers to catch
up, enjoy each other’s company,
make some new connections, and
of course have some respite from
their day-to-day routines.
Carers Lunch: Bentley Pines Training Restaurant.
The first lunch was a Fremantle
Lunch Cruise, which was a unique
experience for many of our Carers.
This cruise from the Barrack Street
Jetty to Fremantle and back, did
not disappoint. The stunning views
from on board the vessel were
made even better with perfect
weather and a delicious hot buffet.
It was nice to see our
Carers catching up and
meeting new people after
such a long break.
Fremantle Lunch Cruise.
The second lunch was a formal sitdown
affair at the Bentley Pines
Hospitality Training Restaurant. This
award-winning restaurant at the
South Metropolitan TAFE is a live,
interactive training environment for
students preparing for work in the
hospitality industry.
To the delight of our Carers, the
four-course menu prepared by
these future chefs was outstanding
and the silver service was excellent.
A definite winner with everyone
MALA PADMANATHAN
VOLUNTEER AND CAMP
COORDINATOR
EXPRESSIONS OF INTEREST:
We are now accepting expressions of interest for our upcoming camps, however please be
advised that as WA’s COVID numbers continue to fluctuate, there may be changes.
Please email your name, contact details and the camp you would like to attend to:
mala.padmanathan@mswa.org.au
Carers Camps: To be hosted at Kilmolee at Safety Bay (12 – 15 September or 9 – 12 October 2022).
Family Camp: Woodman Point (3 – 6 October 2022)
Southwest Clients Camp: The Cove, Denmark (14 – 17 Nov 2022)
29

DIETETICS
HEALTHY
EATING THIS
WINTER
ARTHUR QU
MSWA DIETICIAN
It’s common to feel hungrier in winter. One study has shown we have lower serotonin (the
hormone that controls appetite) levels during cooler seasons, making us crave carbohydraterich
foods. Other factors – like less fruit and vegetable variations, outdoor activities, and
indulging in more comfort foods like curries, pastries, pasta bakes etc – also make it harder
to maintain a healthy weight. So what can we do to maintain our weight or even reach our
weight goals during winter?
Keep active and healthy
In winter the days are colder, it gets
dark more quickly, and people are
less enthusiastic about outdoor
activities. However, indoor exercises
are just as good. Going to the gym,
doing yoga, or talking to your
physiotherapist for an exercise
program tailored for you, will help
to keep your body moving in the
colder months.
There is a growing amount of
research that points out Non-
Exercise Activity Thermogenesis
(NEAT) plays an important role
in shifting our metabolism. This
includes incidental exercises, such
as parking your car away from the
shops, stepping up stairs, even
folding clothes, putting the washing
on, and helping cook dinner.
Monitor your weight
Whilst dressing like a snowman fits
the bill during wintertime, the extra
clothes mean we might not notice
an increase in body fat. So, it’s a good
idea to hop on a scale to regularly
monitor your weight, or keep a track
of your waist measurement.
Feeding myths
There’s limited strong evidence
that winter directly affects our
body weight. Studies that have
suggested this tend to be from
the US, where wintertime is often
overlapped with holiday seasons,
and is likely a co-factor to this overindulging.
So try not to give yourself
psychological permission in winter
to add additional comfort foods
into your diet on a regular basis.
This doesn’t mean you’re going to
have boring, low-calorie meals and
freeze up.
30

Here are some practical tips to
help you enjoy your winter meals
and snacks whilst maintaining the
healthiest version of you:
/ Include meat-free dishes and
light soups early in the week, to
make room for heavier meals
later in the week. This is also an
easy way to get in a variety of
vegetables and lentils.
/ Include mostly homemade meals
rather than take-away meals
and desserts. We know they’re
convenient, but people tend to
overeat them, and indulge in
larger portions.
/ Hero your vegetables, eg,
replacing a layer of lasagne
sheets with zucchini slices and
swapping most of the pasta in
pasta bake with vegetables.
/ Use cauliflower rice/risotto in
curries and pastas, or mixing in
50/50 with your rice or pasta.
/ Use low-fat pastries, eg, filo over
puff.
/ Replace a few milky hot drinks
with herbal teas or low-calorie
alternatives (eg, Jarrah hot
chocolate) throughout the day.
Finally, we know it’s more
difficult in winter to get
the required amount of
vitamin D from the sun.
Did you know you can
leave your mushrooms
outdoors in a sunny area
for an hour before eating
them? They’ll absorb
vitamin D for you!
VEGETABLE LASAGNE
Ingredients
/ 750g zucchini, cut into thin slices
/ 500g butternut pumpkin, peeled
/ 4 x 400g cans chopped tomatoes
/ 8 garlic cloves, chopped
/ ⅓ cup basil, torn
/ 2 bunches English spinach, trimmed and washed
/ 600g fresh lasagne sheets
/ 100g (¾ cup) finely grated parmesan cheese
/ Rocket leaves, to serve
Cheese sauce
/ 40g butter, chopped
/ 90g plain flour
/ 750ml (1.5 cups) milk
/ 375g tub of low-fat ricotta cheese
/ 75g (¾ cup) grated low-fat cheddar cheese
Method
1. To make the white sauce, melt the butter in a medium saucepan, add the flour and stir over low heat
until the mixture is dry and grainy. Gradually whisk in the milk and slowly bring to a simmer. Add the
ricotta, cheese and season to taste.
2. Meanwhile, thinly slice your pumpkin, pop into a microwave-safe container and heat until soft.
3. In a separate bowl, mix the tomatoes and their juice, 2 tablespoons EVOO, garlic, basil, and spinach.
This will form your red-based sauce.
4. Rub butter over the sides and base of a 3-litre heatproof casserole dish (about 19cm x 35cm x 7.5cm)
and place a layer of pasta over the base. Top with zucchini slices, then half the tomato sauce. Top
with one-third of the white sauce, then a layer of pasta, a layer of pumpkin, another third of the white
sauce and another layer of pasta. Top with the remaining tomato sauce and another layer of pasta.
Spread the remaining white sauce over the top and sprinkle with the parmesan cheese.
5. Place the dish on an oven tray and bake for 45 minutes, or until browned and bubbling. Let stand for
10 minutes, then serve with a rocket salad.
31

PAIN & PAIN MANAGEMENT SERIES
Welcome to the final instalment in our series of articles on pain and pain management.
Neurological Liaison Nurse Bronwyn Innes, who has a speciality background in pain
management, explores medications and pain.
If you would like to read the previous articles in our Pain & Pain Management series, all
previous editions of Bulletin can be viewed online at publications.mswa.org.au
PAIN AND MEDICATIONS
Pain-relief medications are used as part of a strategy to manage short (acute) or long-term
(chronic) pain. They work by targeting the cause of the pain or by reducing the feeling of
pain. Medicines include prescription medicines, medicines bought over the counter in
pharmacies or supermarkets, and herbal and natural medicines
The role of medicines is not to cure
pain but to lessen it and improve
functionality and quality of life.
Even the strongest medicines for
pain will not always completely
eliminate it, but they can reduce
the severity of pain. In this way it is
important to view medicines as part
of a comprehensive approach to
pain management and functional
improvement. By making you
comfortable, medicines can make
it easier to resume normal activities
or activities you may have been
avoiding, and can help improve
quality of life by minimising
suffering and maximising function.
It is however, important to
understand that while medicines
can help relieve symptoms, they
can sometimes have unpleasant
side effects. Often these side effects
can be avoided or at least managed
with the help of your doctor.
All medicine whether prescription,
over the counter, herbal or vitamins/
supplements should be used
carefully and appropriately because
they can interact with each other
and cause side effects. It is essential
to always tell your doctor about
everything you are taking for pain
and other conditions.
Medicines should always be taken
as prescribed by the doctor and
if you have any concerns discuss
them with your doctor before
changing the medicine or the dose.
The treatment of pain can be broadly
divided into three categories:
/ Physical (eg physiotherapy)
/ Psychological (eg relaxation training)
/ Pharmacological (eg medicines)
32

Because pain is a subjective
sensation, treatment can be
different from one person to
another, even though the diagnosis
may be the same. It is best to discuss
your treatment with your doctor or
healthcare professional. Your overall
pain management plan will usually
consist of several types of treatment
that will complement each other.
In this article we will focus on the
Pharmacological Interventions.
OVER THE COUNTER (OTC)
MEDICINES:
There are two common types of
OTC medicines:
Paracetamol – often recommended
as the first medicine to try for short
term pain.
Available as tablets, liquid mixtures,
or suppositories. Often is the
sole chemical but is also used in
combination eg cold and flu tablets,
Panadeine, Panadeine Forte.
Regular paracetamol at 4mg /day
can cause liver damage. If it is not
helpful, please stop taking it and
see your doctor.
Nonsteroidal
drugs
Anti-Inflammatory
(NSAIDS) – a group of
medicines that work by reducing
swelling and inflammation and
relieving pain. These include aspirin,
ibuprofen and diclofenac.
Available as tablets, some as
suppositories, and a few as gels or
ointments.
They can cause stomach ulcers
if taken regularly and need to be
taken with food.
NB: Please ensure to discuss all
medication options with your GP
before purchasing any.
PRESCRIPTION MEDICINES:
Prescription pain medications
provide stronger relief than OTC
drugs. Types of prescription pain
relievers include:
1. Anti-neuropathic medications:
These medications are known as coanalgesics
and can be prescribed for
nerve-related pain. They are often
prescribed if you have shooting
or burning pain (nerve injury or
neuropathic pain).
Anti-neuropathic medicines can help
reduce or ‘calm down’ nerve activity
and reduce pain hypersensitivity
associated with conditions like
shingles, diabetic pain, sciatica,
fibromyalgia, and headaches.
2. Anti-epilepsy drugs:
Medications such as Gabapentin or
Pregabalin for epilepsy, interrupt
pain messages to the brain. These
medicines can ease nerve pain and
fibromyalgia.
Carbamazepine (Tegretol) is the first
treatment usually recommended
to treat Trigeminal Neuralgia.
Treatment with Carbamazepine
requires regular blood tests to
monitor blood count and liver
function, to make sure you are not
developing uncommon side effects.
3. Antidepressants:
These medications work on
chemicals called neurotransmitters
in the brain. They work best for
chronic pain, including migraines.
Serotonin Noradrenaline Reuptake
Inhibitors (SNRIs) such as Duloxetine
(Cymbalta) and Venlafaxine (Effexor)
may be useful for pain, mood, and
sleep.
Tricyclic Antidepressants (TCAs)
such as Amitriptyline and
Nortriptyline may be useful for pain
and sleep.
Some people find that mild side
effects (such as dry mouth, blurred
vision, or drowsiness) improve the
longer they take the medicine.
4. Opioid Pain Medications:
Opioids are laboratory made
narcotic pain medicines. They
change how your brain perceives
pain messages. Because they can be
addictive, doctors rarely prescribe
opioids for chronic pain. Opioids are
usually taken for a short time after
surgery or traumatic injury.
Types of opioids include
Buprenorphine patches, Oxycontin,
Fentanyl, Methadone, Tapentadol,
Codeine, Morphine.
5. Muscle Relaxants:
Medications such as
Benzodiazepines and Orphenadrine
reduce pain by relaxing tight
muscles.
Baclofen belongs to this group
of medicines. It is used to reduce
excess tension in muscles which
cause spasms.
INTRATHECAL PUMPS:
Intrathecal pumps offer much
lower doses of baclofen because
they are designed to deliver the
medication directly to the spinal
fluid rather than going through the
digestive and blood system first.
They are often preferred in patients
with spasticity, as very little of the
oral dose actually reaches the spinal
fluid. Besides those with spasticity,
intrathecal administration is also
used in patients with multiple
sclerosis who have severe painful
spasms which are not controllable
by oral baclofen.
33

NURSING
With pump administration, a test
dose is first injected into the spinal
fluid to assess the effect, and if
successful in relieving spasticity, a
long-term intrathecal catheter is
inserted from the spine through
the abdomen and attached to the
pump which is implanted under
the abdomen's skin, usually by the
ribcage. The pump is computercontrolled
for automatic dosage
and its reservoir can be replenished
by percutaneous injection. This is
done on a regular basis. Usually,
every 12 weeks the pump is emptied
and refilled as the efficacy of the
drug is reduced over time. The
pump also must be replaced every
five years or so when the battery is
changed.
Consideration of intrathecal pump
placement depends on severity of
spasticity, suitability of patient, and
is determined by a pain specialist.
SUPPLEMENTS:
Some people find that taking
supplements can help manage
chronic pain, although there is
limited evidence to support this for
some specific conditions.
For chronic pain caused by
osteoarthritis, some people find that
taking glucosamine or chondroitin
can help them.
There is also some evidence
to suggest that supplemental
omega-3 fatty acids can help chronic
pain that affects large areas of your
body, as well as neck and shoulder
pain and period (menstrual) pain.
MEDICINAL CANNABIS:
Medicinal cannabis may be effective
for neuropathic pain if other
medicines have not been helpful.
This must be prescribed by a doctor
with specific experience with its use
in pain management.
INJECTION THERAPIES/PAIN
MANAGEMENT PROCEDURES:
If various non-surgical measures
have proved ineffective in providing
adequate relief or are poorly
tolerated, injection options can be
considered.
/ Pain management procedures
(PMPs) are usually not a cure
for chronic pain, however, they
can provide an effective way
to improve your overall pain
management.
/ PMPs provide pain relief so other
long-term pain treatments have a
better chance of working.
/ PMPs allow you to reduce pain
medications and engage more
effectively in physiotherapy and
behavioural therapies.
Sometimes pain procedures can
actually ‘switch off’ sensitive nerves
and produce long-term pain relief.
An example of a pain procedure is
an epidural injection:
/ If a protruding spinal disc is
irritating a nearby nerve causing
leg pain (sciatica).
/ Using an x-ray machine, a fine
needle is placed into the epidural
space next to the irritated nerve.
/ A small amount of local
anaesthetic and steroid
(cortisone) is injected around the
nerve, via the needle.
/ Epidural steroid injections
may reduce leg pain (sciatica)
for weeks-to-months in 1-in-4
patients.
/ Epidural steroid injections DON’T
treat low back pain, only leg pain.
There are many other procedural
options which target headaches
down to ankle pain. These options
are best discussed with a Pain
Specialist.
34

Q: How can you release your
body’s own medicine chest to
relieve pain?
A: SMILE.
Smiling releases many of our ‘up’
chemicals including serotonin.
We are wired from childhood that
smiling means happiness, so that if
you smile (even if you are unhappy)
the body releases our ‘happy’
chemicals.
Serotonin is the chemical
released from chocolate
and milk drinks –
smiling does it without
the calories.
Walking at our own pace
also increases serotonin and
noradrenaline.
Noradrenaline
makes you feel more robust and
able to cope with stressors or issues.
This is what antidepressants can
also do – but you can help by doing
it naturally.
Reminder: discuss with your GP
or neurologist the best and safest
options for you. We hope that this
information has been informative.
BRONWYN INNES
MSWA NEUROLOGICAL
LIAISON NURSE
REFERENCES:
/ painhealth.csse.uwa.edu.au
/ healthdirect.gov.au
/ painaustralia.org.au
/ nps.org.au
/ mayoclinic.org
/ wpain.com.au
/ Coping with Persistent
Pain: A guide for patients,
partners, family and carers;
(booklet) produced and
published by Janssen-Cilag
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please contact communications@mswa.org.au to sign up to the e-magazine.
35

ACCOMMODATION & OUTREACH
OUTREACH HAPPENINGS:
ALBANY
We love our new facility and have had an interesting time so far at Albany Outreach.
We had a plant-potting session to
add colour to our new areas, and
crafty Clients have been bringing
their own craft in to show us their
ideas. We’ve learnt how to recycle
bread bags and old shirts into floor
mats.
A guest came and spoke to us about
his fantastic soap business and how
he sources the local ingredients.
Thanks to Jasper from Fifo Soap.
We have also been enjoying games
days. Bingo was a hit and we have a
few new ones to try out in the next
few weeks.
At the time of writing this, Christmas
in July is coming up – we know
there’ll be a good turnout for that –
as well as Albany Mobility Solutions
in August.
CAROLINE CLARKE-SMITH
OUTREACH COORDINATOR
ALBANY
36

TREENDALE GARDENS
OUTDOOR UPGRADE
In 2021, Treendale Gardens was selected to receive a generous grant from the ALP via MLA
for Collie-Preston, Jodie Hanns. Jodie had been to visit us at Treendale and was impressed by
what she saw. The grant was to be specifically spent on our outdoor area which was in need
of an upgrade to make it a more welcoming area for Clients and their family and friends to
gather in all seasons.
I think everyone will agree that the
area now looks fantastic with new
furniture, fans, blinds, artwork, and
an array of plants.
Linda Kidd, Nat Hue’ge de Serville
and I started the process of planning
and ideas, however, this vision
would not have come to fruition
without the help of Sue Shapland
and Sandra Wallace.
PAULA KENNEDY
REGISTERED NURSE &
COORDINATOR – SUPPORTED
ACCOMMODATION TREENDALE
37

ACCOMMODATION & OUTREACH
BOOK YOUR STAY AT
MARGARET DOODY HOUSE
Margaret Doody House is a purpose-built respite house nestled in the beautiful coastal suburb
of City Beach, just a five minute drive to the beach where you can meander along the boardwalk
and visit waterfront eateries.
There is also the well-loved local
Empire Village – a small shopping
centre, and a large park just a short
two minute walk from the house.
Margaret Doody House provides
24/7 short-term residential respite
for Clients living with a neurological
condition. Respite care provides
a temporary break from your
everyday routine, and offers your
carer a well-earned break at home.
It is fully equipped and wheelchair
accessible, offering a warm, friendly
environment to relax and enjoy the
quiet surrounds or interact with new
and/or familiar people. Personal
care and support is provided by our
experienced staff, 24 hours a day.
There is also a nurse available during
the week. Massage can be booked
with Physiotherapist (Yasuko) for a
fee, and you can continue to access
your regular therapy sessions and
community supports from here
when pre-organised with your
current provider.
Margaret Doody House has enjoyed
a bit of a facelift to start 2022 – a
fresh coat of paint, new flooring,
new furniture, and a spruce up
of the courtyard. Kind donations
and work provided by a few local
Bunnings stores has resulted in a
beautiful bright new outdoor space
to relax in and enjoy.
A huge thank you to Lauren at
Bunnings Innaloo for coordinating
the other stores in helping create
a welcoming courtyard for Clients
and staff to enjoy.
Our amazing volunteer gardener,
Colin, has begun refreshing and
maintaining our gardens which
should have us looking fabulous in
no time.
With all the new changes,
one thing remains the same,
and that is our continued
provision of genuine warmth
and a high level of customised
care and support to meet
individual needs.
Each bedroom is equipped with a
modern king, single electric bed
with air mattress, electric ceiling
hoists, wall mounted smart TV,
reverse cycle air conditioning and
semi-ensuite.
In our current COVID-19 climate,
MSWA has been constantly
updating and implementing our
prevention procedures to keep our
staff and Clients as safe as we can.
We look forward to welcoming new
and familiar clients to Margaret
Doody House.
Call us on 9385 9574 for more
information, to arrange a pre-stay
visit, or to book in for your respite stay.
ALIMUL (‘TAS’) TASIN
MANAGER OPERATIONS &
BUSINESS DEVELOPMENT –
RESIDENTIAL RESPITE
CITY BEACH
38

SUBMIT YOUR
ARTICLE
TO US
Do you have a story about living with a neurological condition in WA that other MSWA Clients
might like to read? We invite you to share your experiences with our many Bulletin readers.
Email your submission to bulletin@mswa.org.au for consideration by the Editorial
Working Group.
SUGGESTIONS, COMPLAINTS
AND COMPLIMENTS
We want to hear from you. Your feedback helps us to understand what is working well and
where we can improve.
You can raise a concern or
acknowledge the supports an MSWA
staff member has provided by:
/ Talking to the coordinator of
your services
/ Telephoning the Complaints
Liaison and Compliance
Coordinator, Davina Sawyer,
on 6454 3146
/ Emailing
feedback@mswa.org.au
/ Writing to Quality and
Compliance; Locked Bag 2,
BENTLEY DC 6983
Please tell us:
/ What happened
/ When it happened
/ Who was involved
/ What you would like to see
occur as a result of sharing your
feedback
All feedback is reviewed, and
complaints investigated in a timely
manner with the team responsible
for the service.
Our goal is to achieve a positive
outcome for all people involved
and improve the quality of the care
and services provided. You will be
included in the process and the
outcomes shared with you.
Please note, you have the right to
have support from an advocate at
any point in a complaint process.
The Complaints Liaison and
Compliance Coordinator can help
you to access an advocacy service
if you wish.
39

WHATEVER YOUR NEURO,
WHATEVER YOUR NEEDS.
MSWA.ORG.AU