MSWA Bulletin Winter 2020

THE OFFICIAL MAGAZINE OF MSWA
Winter 2020
mswa.org.au
Wendy
Diane
Lisa
Rebekah
Hamilton Hill
MSWA
KEEPING YOU
CONNECTED.
INSIDE
Brett
/ Telehealth at MSWA
/ Feedback from
Customer Survey
Occupational Therapy
/ Eating Mindfully
/ Research Roundup

NURSING
WILSON CENTRE
29 Parkhill Way 9365 4888
Fax 9451 4453
Freecall 1800 287 367
See Health Team Dept contacts on this page
MEMBER SERVICES DIRECTORY
GENERAL MANAGER –
MEMBER & CLIENT SERVICES
Nicola Washington 9365 4840
MANAGER OF 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
GENERAL MANAGER - STRATEGIC
SUPPORTS AND RESIDENTIAL OPTIONS
Sue Shapland 6454 3174
MARGARET DOODY RESPITE HOUSE
Manager, Chris Rush 9385 9574
FERN RIVER ACCOMMODATION
Manager, Danuta Figurska 9356 2747
HAMILTON HILL ACCOMMODATION
Manager, Jayne O’Sullivan 9331 5780
TREENDALE GARDENS
RESPITE & ACCOMMODATION
Manager, Linda Kidd 9725 9209
BUTLER SUPPORTED
ACCOMMODATION FACILITY
Manager, Chris Rush 6154 5120
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
General feedback or complaints please
contact Liz Stewart 6454 3173 or
feedback@mswa.org.au
EDITORIAL COMMITTEE
Greg Brotherson (Editor), Ros Harman
(Guest Editor), Marcus Stafford (CEO),
Paul Cavanagh, Sue Shapland,
Nicola Washington, Libby Cassidy,
Jamey Claffey, Carol Chong,
Aileen Ward and Geoff Hutchinson.
The Editor welcomes unsolicited submissions.
All articles are subject to a reviewing process.
The views expressed are those of the authors
and do not necessarily reflect the view of
MSWA’s staff, advisors, directors or officers.
Our MS nurses are usually the first point of contact after the neurologist’s diagnosis of MS.
VANISHREE CHETTI, MANAGER: 9365 4818 OR COMMUNITY NURSE: 9365 4888
PHYSIOTHERAPY
Our team aims to provide treatment interventions to develop and maintain mobility
and function.
DAVE HATHORN, MANAGER: 9365 4837 OR PHYSIO DEPARTMENT: 9365 4834
OCCUPATIONAL THERAPY
Occupational Therapists enable Members to continue their work and other interests
for as long as possible through advice, aids and equipment.
ILISSA LIEW, MANAGER: 9365 4804 OR OT DEPARTMENT: 9365 4888
SPEECH PATHOLOGY
Our Speech Pathologists provide support by assessing, diagnosing and creating
individualised treatment programs for Members who experience swallowing and/or
communication difficulties.
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. We have a Peer Support & Health Education Coordinator who organises
peer connection & events and supports health and wellness education services.
TO MAKE AN APPOINTMENT PLEASE CALL: LISA PAPAS, MANAGER: 9365 4836
OR COUNSELLING DEPARTMENT: 9365 4811
SOCIAL WELFARE
Social Welfare Officers assist Members 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
INDIVIDUAL OPTIONS
We provide long-term and time limited in-home supports including assistance with
personal care for people with MS, to help them remain in their homes. Care and
supports are provided through a combination of funding from the Department of
Communities - Disability Services, and our own fundraising efforts.
AILEEN WARD, 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 Members, carers, and families, primarily
funded by Lotterywest, and for a nominal cost to participants. These camps provide a
break from daily routines, and strengthen friendships and support networks.
COORDINATOR FOR CAMPS & RECREATION: 9365 4843
CONTENTS
LETTER FROM THE EDITOR. ............... 3
FROM THE DESK OF THE CEO .............. 4
GENERAL MANAGER STRATEGIC SUPPORTS
AND RESIDENTIAL OPTIONS . .............. 5
GENERAL MANAGER
MEMBER & CLIENT SERVICES. ............. 6
MSWA RESEARCH CONTRIBUTIONS. .......... 7
RESEARCH ROUND UP ................. 8-10
HAVE YOU HAD YOUR FLU SHOT?. ...........11
WAIT TIMES REMAIN DESPITE FOCUS . ...... 12
EATING MINDFULLY. .................... 13
PREVENTING FALLS AND TRIPS . ........... 14
COMMUNICATING WITH THE USE
OF TECHNOLOGY: WHAT’S NEW?. ........... 15
TELEHEALTH AT MSWA. .................. 16
I MET A DOG. ......................... 17
REACHING ACCEPTANCE AND
LOOKING TO THE FUTURE. ............ 18-19
WHAT’S ON ....................... 20-21
MSWA FEEDBACK . ..................... 21
FEEDBACK FROM CUSTOMER SURVEY . ...22-23
MSWA’S READATHON HEROES. .............24
VOLUNTEER UPDATE. ................... 26
MARY SAYS CHEERIO. ................... 27
HAMILTON HILL ACCOMMODATION NEWS. ....28
TREENDALE GARDENS NEWS . ..............28
WHAT ABOUT THE CAMPS?. ............... 29
STAYING CONNECTED TO OUTREACH . .........30
COVER STORY . . . . . . . . . . . . . . . . . . . . . . . . . . 31
2

WELCOME
Since our autumn Bulletin was published the main topic of conversation and news has been
the Coronavirus, COVID-19. Newspapers and television programs have talked of little else
and we have gone through a couple of evolutions of restrictions and rules designed to keep
us safe. Fortunately, numbers in Western Australia have been relatively low, and the social
distancing and travel restrictions seem to have helped.
Here at MSWA, our CEO and
management team have been
working hard to continue providing
necessary services to people
with MS and other neurological
conditions. Some changes have
occurred: group sessions such
as physio and outreach were
suspended in line with Government
guidelines, one-on-one sessions
have continued where possible and
phone contact has enabled staff to
keep in touch with people. Some
services have been transitioned
to Telehealth, including services
such as counselling, general
nursing advice and speech therapy.
We’ve also successfully delivered
physiotherapy and occupational
therapy to many Members and
Clients. MSWA staff have been
proactive and energetic in ensuring
that the needs of people during
these stressful and challenging
times are being met.
It is very reassuring that the people
of WA continue to support MSWA
by purchasing raffle and lottery
tickets as usual. MSWA continues
to be a financially viable and
successful organisation, supporting
people living with multiple sclerosis
and other neurological conditions.
The management and staff
have taken on the challenges of
this pandemic with creativity,
innovation, and the ongoing
resolution to be a bastion of support
during these trying times.
The CEO provides regular updates
to staff and Board directors about
how we are tracking and makes sure
that the communication channels
are open and transparent. We can
be grateful to have such a skilful
and dedicated team of employees
at MSWA who are ensuring the
support of Members and Clients,
and the ongoing success of
the organisation.
As interim editor of Bulletin I would
like to thank everyone for their
patience, adaptability and ongoing
support. We look forward to a time
in the future when this pandemic
will have passed, and life will resume
as it was before, albeit with a new
awareness of how to survive tough
times and support each other.
Enjoy this edition and its news
about what is happening at MSWA.
Inside you will read updates
from our various managers from
different areas, and also Members’
stories. Enjoy the story about Mary
Cross, who recently retired as an
MSWA volunteer, aged 90. All the
best, Mary!
ROS HARMAN
GUEST EDITOR
3

FROM THE DESK
OF THE CEO
MARCUS STAFFORD
CEO
Throughout the COVID-19
restrictions of the last quarter, you
may have heard me say “We’re here
and we’re strong”. As we begin to
emerge from the uncertainty, I shall
now add the extension, “and we’re
looking to the future”.
Indeed, this winter feels like a type
of springtime, as we welcome
events back on the MSWA calendar
and anticipate opening the doors of
our Outreach Centres in July.
The month of August is all about
Readathon, which is a fantastic way
to get you, and the kids in your world,
reading and supporting MSWA.
And a date has been confirmed for
our MSWA Ocean Ride and with it
the annual Members’ Ride.
We’ve introduced a new Hip Hop
Yoga event, which will fundraise
for Customers with all neurological
conditions. The inaugural session
is happening virtually on a Zoom
screen near you on 30 July. Be sure
to read the What’s On section to
find out more.
On a service delivery level,
solutions that were developed
under the COVID-19 restrictions,
such as Telehealth, are now
being made permanent options,
wherever appropriate. The silver
lining of recent adversity was an
acceleration in our approach and
ability to combine technology and
service, something I am pleased to
continue to put at the forefront of
what we do.
On another forward-looking note,
the latest preliminary research
on COVID-19 in people with MS
offers some reassurance. I’d like
to share with you a message
from Professor Bill Carroll AM,
Neurologist, President of the World
Federation of Neurology and MSWA
Board Member:
“The evolving evidence (largely
Italian based 1 ) and anecdotal
evidence from other sources
(respected) suggest that people
with MS who are currently stable
on Disease Modifying Therapies are
not at increased risk of contracting
COVID-19 nor is any one DMT likely
to increase the same risk.
“Severe COVID-19 and death relate
more to the known risk factors of
comorbidity and age. While this
statement is based on relatively
low numbers, it is encouraging
and reassuring.”
MSWA will continue to
monitor any new research
coming to light and
keep you informed. If you
do have any concerns
about your health or your
treatment regime, speak
to your neurologist and/or
GP for tailored advice.
This quarter also marks the end of
the financial year and, as ever, I will
provide you with a comprehensive
update on MSWA’s performance in
the next edition of Bulletin, after our
Annual General Meeting. However,
I will say that, all things considered,
we have left 2019/2020 in a position
of continued strength.
As you know, as we continue to
serve people with neurological
conditions; we’re here, we’re strong
and we’re looking to the future.
1
Lancet Neural 2020, Published Online April 29, 2020 https://doi.org/10.1016/ S1474-4422(20)30147-2
4

STRATEGIC SUPPORTS
AND RESIDENTIAL
OPTIONS
SUE SHAPLAND RN, BN, MSCN
GENERAL MANAGER
STRATEGIC SUPPORTS AND
RESIDENTIAL OPTIONS
“Good luck is when opportunity
meets preparation, while bad
luck is when lack of preparation
meets reality. ”
Mario Andretti.
Well we have all been through many
changes and new territory since our
last Bulletin! COVID-19 has been a
real challenge on many fronts but
overall, we have been lucky here
in Australia, and in WA. One of the
benefits of being an island and a
long way from many places I guess!
Whilst we had our ‘wings clipped’
and routines disrupted to an extent
most of us have never experienced,
we have not had the large case
numbers and levels of illness and
deaths seen overseas including of
course, the UK and the USA.
Together, under good leadership
and cooperation, with most people
following Government advice, we
are now starting to return to what
is being termed ‘our new normal’,
including the football season
which has been sadly missed by
most! MSWA regrettably had to
cancel several of our popular events
including Step Up and our annual
MS Awareness Week Forum, but
they will be back!
The restrictions imposed led to new
creativity, born out of necessity, as
we turned to video conferencing
and linking in by many different
avenues – Zoom, Webex, Skype, etc,
with MSWA staff and many GPs
embracing these changes. One of
the better outcomes has been some
increases in these connections,
as people were physically isolated
from their friends and loved ones,
and absence has made the heart
grow fonder as we now reconnect
wherever we can. There has been
a large spike in home cooking and
crafts, and parents have found a
new respect for teachers! Hopefully
some lasting good changes will
remain with us beyond COVID-19.
We had to close our popular respite
homes for several weeks, but they
are now back in operation and the
staff are keen to reconnect with
known customers and welcome
new ones. Our accommodation
facilities have had restrictions
imposed, including reduced visitors,
reduced community outings and
the flu vaccination requirement for
staff and visitors as resident and
staff health and safety is paramount.
We have had to delay the start
of construction of our Albany
facility but look forward to that
commencing in 2021.
The research community
has been impacted, with
some labs being closed
and access to participants
reduced, but this is now
starting to ramp up
again. Once again MSWA
is looking forward to
supporting research into
MS and other neurological
conditions, aiming to
better the record donation
of $3.5 million for this year.
I hope you enjoy this edition of
Bulletin and that you and yours stay
safe and well.
5

MEMBER &
CLIENT SERVICES
NICOLA WASHINGTON
GENERAL MANAGER
MEMBER & CLIENT SERVICES
Welcome to the winter
edition of our Member &
Client Services Bulletin.
We have certainly been through
a strange time over the past few
months and one that has impacted
the world in a way that no one could
have predicted.
I am sure you will agree that we
have been lucky in Australia not to
have seen the numbers that other
countries have experienced with
COVID-19, which has enabled us
to get back to some sort of normal
quicker than originally expected.
The great news is that our group
and social support activities have
resumed, including the return of
Outreach at designated Service
Centres. I know our Members
and our staff have missed being
together and it is great to engage
with everyone again, albeit at an
appropriate distance.
As we get back to ‘the new normal’
there are some things that we will
keep in place to assist with service
delivery. Our online Telehealth
will remain in place as an option
for delivery of services where it
is appropriate to do so. This will
provide additional choice to you,
the Customer, on how you receive
your services.
We have all become used to
communicating in different ways
through Zoom, Webex, Teams,
FaceTime etc which have all
proved to be great platforms to
communicate across and I do
not see these disappearing any
time soon.
Our Customer Satisfaction Survey
has been analysed and the results
are reported on pages 22-23. Thank
you to everyone who completed
the Survey. We are already working
on what we can improve. One of
the areas we are focused on is
communication. We are committed
to providing you with regular
touchpoints and our Customer
Engagement team will be keeping
in contact with you to get your
feedback and your preferences
on communication.
The NDIS March quarterly results
summary:
/ 27,780 participants have entered
the scheme since July 2013. 27,379
of these continue to be active.
/ 12,349 active participants are
receiving supports for the
first time.
/ In the current quarter, 3,151
participants have entered
the scheme.
/ 6,645 plans have been reviewed
this quarter.
/ 3,515 access decisions have been
made in the quarter, 2,828 of
which met access and are still
active as at 31 March 2020.
/ 208 (6.6%) of the new active
participants this quarter
identified as Indigenous, taking
the total number of Indigenous
participants in WA to 1,685 (6.2%).
/ 365 (11.6%) of the new active
participants this quarter are
Culturally and Linguistically
Diverse (CALD), taking the total
number of CALD participants in
WA to 2,265 (8.3%)
/ North East Metro has the highest
number of active participants
(5,240), while Goldfields-Esperance
has the lowest (431).
The number of participants in the
NDIS has grown with over 12,000
receiving support for the first time
which is great news. Wait times
continue to be an area needing
review as outlined on page 12.
If you do have any questions
regarding your NDIS plan please
do not hesitate to contact
ndisenquiries@mswa.org.au. Our
team of dedicated staff are always
here to help you navigate any
problem or question you may have.
I would like to take this opportunity
to thank our Customers for being
flexible and working with us over
the past few months to maintain
our service delivery, albeit in a
different way, and to our incredible
staff for their commitment, hard
work and dedication.
Thank you.
6

RESEARCH
MSWA RESEARCH
CONTRIBUTIONS
Professor Sulev Kōks with Professor
Carolyn Young (who designed and leads
the study in the UK). Taken when she
visited the Perron Institute last year.
Recruitment well under way for TONiC study
The Perron Institute is continuing its
recruitment of people with motor
neurone disease (MND) for the
pilot TONiC study, a project proudly
supported by MSWA.
TONiC (Trajectories of Outcome
in Neurological Conditions) is
examining factors influencing
quality of life for people with
neurological conditions. It
originated in the UK and is the
largest study of its kind in the world.
The aim is to improve services for
people living with conditions such
as MND by identifying quality of life
aspects that are important to them,
but which may be underestimated
by current service provision.
The WA TONiC study is led by
Professor Sulev Kōks, head of
Genetic Epidemiology Research
at the Perron Institute and
Murdoch University.
With the help of the Motor
Neurone Disease Association of
WA in reaching out to potential
participants, there has been a good
response, with questionnaires sent
out and some already completed
and returned.
“We are pleased with the initial
response from patients in the
community so far,” Professor Sulev
Kōks said.
“Feedback from participants in the
pilot study will be used to tailor
the questionnaire for Western
Australian patients in the next stage
of the project.”
CEO Marcus Stafford AM said he
was pleased to be able to support
this important research.
“Although this study is initially
targeting MND, I know the team
have the intention to broaden the
research to include people with
multiple sclerosis and possibly
other neurological conditions,” said
Mr Stafford.
“This is fantastic. It’s
great to be able to fund
research that looks into a
debilitating disease such
as MND, and the fact the
research can be extended
to a wider group only
makes it that much more
exciting. Watch this space.”
For more information on the study,
please contact Leanne Jiang:
leanne.jiang@perron.uwa.edu.au or
see the Perron Institute and MSWA
Facebook pages.
7

RESEARCH
RESEARCH
ROUND UP
SUE SHAPLAND RN, BN, MSCN
GENERAL MANAGER STRATEGIC SUPPORTS
AND RESIDENTIAL OPTIONS
FROM MULTIPLE SCLEROSIS NEWS TODAY
Read more at:
multiplesclerosisnewstoday.com
Ability to ‘Create’ Astrocytes
Supports Their Damaging Role in
MS, Like Diseases, Patricia Inacio PhD.
A new study shows an inflammatory
environment can turn astrocytes,
key supportive cells for neurons,
into their killers, fostering the
progression of neurodegenerative
diseases like MS.
In a first, researchers at the
New York Stem Cell Foundation,
created astrocytes derived from
human stem cells (hIPSCs). They
then placed these cells in an
inflammatory environment and
observed what happened.
Following inflammatory stimulation,
the astrocytes become reactive,
dysfunctional, and toxic, triggering
neuronal death — all of which opens
‘a window for the study of their role’
in neurodegenerative disorders.
The group, and others, look
forward ‘to using our new system
to further explore the intricacies of
astrocyte function in Alzheimer’s,
multiple sclerosis, Parkinson’s, and
other diseases’ in the hope it will
‘point us toward new treatment
opportunities’ that might slow or
prevent neurodegeneration.
Australian Review Suggests
‘Gut Mucus May Help Ease MS,
Other Neurological Diseases,
Patricia Inacio PhD.
An Australian review of 113
neurological, gut and microbiology
studies, by researchers at the
RMIT University in Melbourne,
suggests tweaking the protective
properties of the gut mucus, a
layer lining the inside of the gut,
to boost the proliferation of good
bacteria potentially could halt
the development of neurological
disorders, like MS.
The gut is lined with a mucus layer,
key for a healthy gastrointestinal
system, with properties adapted
to each segment. In the small
intestine it’s more porous, to
facilitate nutrient absorption, while
in the colon it becomes thicker,
acting as a physical barrier against
harmful bacteria but allowing the
natural, beneficial community of
microbes living in the gut – the gut
microbiome – to thrive.
The gut is innervated not only by
the autonomic nervous system, but
its own network of neuronal cells
that regulate the functions of the
gastrointestinal tract, called the
enteric nervous system (ENS).
Increasing evidence shows
that changes in the gut and its
microbiome have far-reaching
implications and are commonly
found in people with neurological
disorders, such as autism,
Parkinson’s and Alzheimer’s
disease, and also MS.
“Mucus is a critical protective layer
that helps balance good and bad
bacteria in your gut but you need
just the right amount – not too little
and not too much,” said Elisa Hill-
Yardin in a press release.
Hill-Yardin is a professor at School
of Health and Biomedical Sciences,
RMIT University and the study’s
senior author.
“Researchers have previously shown
that changes to intestinal mucus
affect the balance of bacteria in the
gut but until now, no one has made
the connection between gut mucus
and the brain,” Hill-Yardin said.
She believes that “microbial
engineering, and tweaking the gut
mucus to boost good bacteria, have
potential as therapeutic options for
neurological disorders.”
8

HERE WE PROVIDE SOME SUMMARIES OF RESEARCH SOURCED FROM WEBSITES IN AUSTRALIA
AND AROUND THE WORLD; WE HOPE IT’S OF INTEREST TO YOU.
WE HAVE INCLUDED BOTH MS SPECIFIC AND OTHER NEUROLOGICAL RESEARCH UPDATES.
READ MORE AT
MSWA.ORG.AU/RESEARCHUPDATE
FROM MS RESEARCH AUSTRALIA
Read more at: msra.org.au
Cutting Edge Technologies Help
Discover Unknown Cells in the
Human Body.
Australian scientists have
discovered nine subpopulations of a
subtype of B cells (a type of immune
cell) which differ in people with MS
compared to those who don’t have
MS. They also differed in people
with active MS compared to those
with inactive MS.
The human body is made up of
many different types of cells; the
exact number of types is unknown.
More and more subtypes of cells
are being discovered as technology
improves. MS Research Australia
funded researchers have been
using the latest technologies,
which is providing unprecedented
insights into changes in particular
subtypes of immune cells that
occur in people with MS.
The group of Sydney researchers
have been studying the immune
system and examining and
characterising the proteins on the
surface of B cells and made some
exciting discoveries.
These findings highlight the
exciting possibilities new
technologies bring, and that
measuring these B cells may help us
understand when a person with MS
might develop active forms of the
disease and how various treatments
might be working, including UV
radiation therapy.
The group has identified previously
unknown subsets of cells which
correlate with MS attacks on the
central nervous system, suggesting
that some of these subtypes of
cells are potential targets for highly
targeted therapies which could
impact the progression of MS.
Copper Delivery as a Potential
Treatment for MS, Associate
Professor Peter Crouch, University
of Melbourne.
One of the laboratory models used
to study MS is based on treating
mice with a compound that binds
to copper in the body, which causes
loss of myelin. However, no research
has yet investigated exactly how
the compound causes the myelin
cells to die in mice and whether this
provides clues as to how myelin is
damaged in MS.
Using techniques previously used
for his research into MND, Associate
Professor Crouch will determine
whether MS-affected tissue in mice
and in people with MS is functionally
deficient in copper.
The project receives funding
support from The Trish MS Research
Foundation.
In this study, Associate Professor
Crouch will examine both the levels
of the copper dependent enzymes
in the tissue and their actual
copper dependent enzymatic
activity. Differences between these
two measurements can reveal
functional copper deficiency
despite no change in copper levels
within the tissue.
This project will be the first to assess
the specific activity of multiple
copper dependent enzymes in
a laboratory model of MS and in
post-mortem tissue from people
with MS. It will therefore be the
first to provide clear biochemical
data to indicate whether there is
a link between functional copper
deficiency and loss of myelin in MS.
Associate Professor Peter Crouch (right)
& Dr James Hilton (left), University of Melbourne.
9

RESEARCH
FROM THE MS TRUST UK
Read more at: mstrust.org.uk
Preliminary research on Covid-19
in people with MS in Italy offers
some reassurance.
People with MS who contracted
COVID-19 did no worse than the
general population according to
preliminary results from Italy.
Researchers in Italy have been
collecting data to understand
the relationship between MS and
COVID-19, trying to understand
whether having MS increases the
risk of a more severe COVID-19
infection, and whether taking
disease modifying drugs may add
any extra risk.
The Italian MS Society (AISM), the
Italian MS Foundation (FISM), and
the MS Study Group of the Italian
Neurological Society set up an
online platform to record and collect
data about people with MS in Italy,
who were diagnosed with COVID-19
or developed symptoms (suspected
COVID-19). MS neurologists across
Italy were asked to input data and
share patient outcomes.
Early results from the data collected
have now been published; this
includes 232 people with MS who
tested positive for COVID-19 (57
people) or have suspected COVID-19
(175 people). Of the 232 people,
211 were taking a disease
modifying drug.
They recorded the severity of
COVID-19 in these 232 people:
/ 222 (96%) had a mild infection
/ 4 (2%) had a severe infection
/ 6 (3%) had a critical infection
Of those who were critical, one
recovered and five died; those who
died tended to be older (50+) and
have other health conditions.
It's too early to say from this data
whether DMDs make a difference
to COVID-19 recovery, but it does
not suggest that the current DMD
advice should be changed.
Although this research is preliminary
and the numbers are small, these
results are reassuring for people
with MS. They suggest that having
MS doesn’t increase your likelihood
of a more severe COVID-19 infection
and that the majority of people with
MS are likely to have a mild infection,
the same as the general population.
FROM THE NATIONAL MS SOCIETY
Read more at: nationalmssociety.org
Plasma neurofilament light levels
are associated with the risk of
disability in multiple sclerosis,
Ali Manouchehrinia, PhD, et al;
Karolinska Institutet; Neurology
May 20, 2020.
Higher blood levels of a molecule
called neurofilament light chain
(NfL) were associated with
progression of disability in blood
samples from 4,385 people with MS.
Although further study is needed
before this blood test can be used
routinely to predict disease course
and guide the care of individuals
with MS, these findings add
to growing evidence that NfL
has potential as a predictive
biomarker of MS disease activity
and disability progression.
NfL is a fragment and part of the
debris that enters the spinal fluid
and blood when nerve wires (axons)
are damaged. Studies of NfL in the
bloodstream and spinal fluid have
been underway to better define
how this biomarker may be used
to help detect and predict disease
activity and response to treatments,
not only in MS but in other disorders.
In this large Swedish study, 4,385
people with MS from Swedish MS
registries, and 1,026 people who did
not have MS, had NfL blood levels
tested; and the participants were
followed up for five years.
People with MS had significantly
higher levels of NfL in their blood,
compared to people without MS.
Higher NfL levels were significantly
associated with worsening disability
during the next year and with the
likelihood of reaching moderate
disability (affecting daily activities
but not walking ability).
This large study adds to a growing
body of knowledge needed to
determine the best use of NfL as a
biomarker for MS care, treatment
decisions and clinical trials.
Additional studies underway will
help standardise its use and help
understand how age and other
health conditions impact NfL levels.
10

NURSING
HAVE YOU
HAD YOUR
FLU SHOT?
SUE SHAPLAND RN, BN, MSCN
GENERAL MANAGER
STRATEGIC SUPPORTS
AND RESIDENTIAL OPTIONS
Each winter brings the risk of flu and vaccinations are recommended for those at risk: the
young, the elderly and those with existing illnesses. It has been more highly recommended
by the Government this year due to the added risk of COVID-19.
The vaccination is recommended
annually as it wears off after three
to four months; last year’s extended
flu season saw some people
vaccinated twice.
Our Members often ask if they
should have the vaccination or not.
Our medical advisor Professor Bill
Carroll AM offers the following
comment:
"There is no evidence that these
vaccinations make MS worse or
cause a relapse. Should a relapse
occur, around the time of 'flu'
vaccination it is thought to be
coincidental. Occasionally people
with MS having vaccinations can
have a brief exacerbation of existing
MS symptoms; but this is not
worsening of MS. People with MS
are advised to discuss this with their
treating neurologist or physician as
soon as possible as it is essential to
have the vaccination earlier rather
than later to reduce the risk of
contracting the flu.”
Don’t forget that your GP and / or
neurologist can advise you on these
and other important health matters.
The Government funded Health
Direct website: healthdirect.gov.au/
colds-and-flu-treatments is packed
with health information and advice,
including flu updates and tips to
help reduce the spread.
While it can happen any time, it's
more common to catch the flu, or
experience flu-like symptoms, in
the colder months of the year (April
to October).
6 ways to fight the flu; most
of which apply to preventing
the spread of COVID-19 and
other infections:
Get your annual flu vaccination
to be protected. It reduces the
chances of both catching and
transmitting the flu. See your GP or
local pharmacy for advice.
Wash your hands for 20 seconds
and frequently; good hand hygiene
is the best way to prevent the
spread of colds and flu and other
infections. Use soap and water or
hand sanitiser.
Cover your coughs and sneezes;
this prevents the spread of infected
droplets to others and surfaces.
Bin your tissues; throw tissues in
the bin after use and then wash
your hands.
Avoid sharing cups, plates, cutlery
or towels with others.
Self-care at home; mostly you can
treat the symptoms of a mild cold
or flu yourself. Most people will get
better within 7-10 days without any
treatment.
Get plenty of rest, drink plenty of
water and non-alcoholic drinks,
keep warm, eat a healthy diet and
avoid exposure to cigarette smoke.
Your pharmacist can assist with over
the counter treatments if necessary.
If you live alone, let someone know
you aren’t feeling well so they can
keep an eye on you.
See your doctor if you are unwell and
experiencing high temperatures,
headache, breathing difficulties or
a rash, or if you are worried at all.
You can speak to a registered nurse
for free advice 24/7 by calling Health
Direct on 1800 022 222.
11

CUSTOMER ENGAGEMENT TEAM
WAIT TIMES REMAIN
DESPITE FOCUS
The introduction of the NDIS promised a modern way of
providing disability funding to Australians. Its architects
presented the scheme as an innovative and visionary
solution to the predicament that was disability block-funding
and a way of providing participants with control over their
services. However, as Robert Burns once wrote, “The bestlaid
schemes o' mice an' men.”
While the NDIS got lots right and
has quickly improved in many
other areas – the NDIA’s responsive
handling of the COVID-19 pandemic
was impressive – one of the
challenges with the scheme remains
the long wait-time participants face
to receive their first plan. Delays
in decision-making and a lack of
information are two of the most
regular complaints about the NDIS,
with many participants indicating
they have had to wait many months
for the NDIA to contact them or
make a decision.
The wait-time problem has been so
bad that it became an election issue
as the Government introduced an
NDIS Participant Service Guarantee
to support positive experiences
with the NDIS. From 1 July 2020,
the Guarantee will aim for a new
standard for the time it takes for
the NDIS planning process. This
means there will be shorter, agreed
timeframes for people to receive
a decision on eligibility, receive
an NDIS plan and to have their
plan reviewed. So good news for
all, happy days and problem
solved… right?
Potentially yes, any focus on
improving the speed and efficiency
of the planning process should be
applauded. However, it should also
be noted that the ‘Tune Review’
that proposed these changes
did highlight that there may be
some difficulties in achieving
this new standard before July
2021. So, perhaps more patience
is required. Nevertheless, any
focus on Customer wait-time is a
positive outcome. In fact, MSWA’s
NDIS team has already seen
some Customers move from their
eligibility assessment to planning
in a matter of days, not the weeks/
months that had become the norm.
One word of warning would be to
ensure that you are prepared for
the planning meeting should it
arrive sooner rather than later. We
have seen some planning meetings
be conducted over the phone with
very little warning. If this happens
to you please remember it's your
planning meeting and the result
will determine your services, so if
you need more time, make sure you
let the NDIA planner know.
For our part, the MSWA
NDIS Team will continue to
work with you to help you
move through the planning
process as quickly and easily
as possible. However quick
your planning process is,
our Customer Relationship
Coordinators will do their
best to help and ensure you
have all the information
you need to achieve a
positive outcome.
GEOFF HUTCHINSON
MANAGER CUSTOMER
ENGAGEMENT
12

COUNSELLING
EATING
MINDFULLY
KELLIE HANSEN
MSWA COUNSELLOR
Would you like to enjoy your food more? Then eat mindfully!
Mindful eating begins with eating
slowly and without distraction.
However, it goes much further
than this. It engages all parts of
your body, mind and heart. It
brings curiosity and playfulness to
food as you explore colours, tastes,
scents and sounds. You develop a
connection and response to food
and inner cues to hunger and
satisfaction. Mindful eating can
replace self-criticism and shame
with self-nurturing and respect
for your own inner wisdom. With
practice, mindful eating supports
the freeing of habitual patterns of
thinking, feeling and acting.
Tips for eating mindfully:
/ Be curious about your eating
habits and without judgement.
/ Begin eating mindfully for one
meal per day or even one meal
per week.
/ Purchase produce mostly from
the outside aisles of supermarkets,
avoiding the centre aisles which
are heavy with processed foods.
/ Eat from a smaller plate to help
with portion sizes.
/ Check if you are eating due to an
emotional hunger trigger such
as stress, or a body hunger signal
such as stomach growling.
/ Turn off screens and reduce
distractions. Focus on your meal,
your own company, or those
around you.
/ Slow your eating down by
putting down your fork between
mouthfuls. Make a point of
drinking slowly and pausing.
/ Focus on gratitude and
appreciation for the journey of
what you are eating. Think about
where your food has come from,
how it grew and the people who
helped prepare it.
/ Try not to skip meals otherwise
your priority will be to fill the void
instead of enjoying your food.
/ Chewing food thoroughly
releases extra nutrients and
flavours and is also kinder to our
digestive system.
/ Instead of finishing everything on
your plate, pack leftovers.
/ Eat sitting down, never on the go
or standing up.
Mindful eating is not a diet.
It does not dictate or make
you feel guilty about food
choices. Instead it brings an
awareness to the experience
of food that is unique to you
on a moment by moment
basis that can support health
and wellbeing and enhance
the enjoyment of food by
recognising our natural
food cues.
For additional support you can:
/ Speak to your counsellor
/ Download some apps such as Am
I Hungry, Mindful Bite and Eat
Chew Rest
/ Search online ‘mindful eating
Australia’ for support, information
and services
13

OCCUPATIONAL THERAPY
PREVENTING FALLS AND TRIPS
Falling can be a frightening experience. Many people with neurological conditions are
susceptible to falls, which may occur for a number of reasons. An occupational therapist (OT)
can work with you to identify some prevention strategies that may assist, including:
DE-CLUTTERING
It is important to keep walkways
clear and be aware of rugs, power
cords or other pieces of furniture
which may cause tripping hazards.
Keep commonly used items
within reach, to avoid unnecessary
bending or reaching.
PERSONAL ALARMS
Personal alarms can be worn
to ensure that you can contact
assistance should you experience
a fall. There are many options
available including who the alarm
contacts and how your wear it.
An OT can assist you in finding an
alarm that best suits your needs.
RAMPS AND RAILS
Hazards such as steps, door frames
or uneven surfaces can increase
your risk of falls. An OT can assess
your home environment to see if
ramps or rails may be suitable and
help you find the most appropriate
option.
KEEP PHYSICALLY
AND MENTALLY ACTIVE
It is important to keep moving to
ensure your legs stay strong and
conditioned. Additionally, mental
wellness is important in helping you
stay alert so that you can identify
any potential hazards.
Activities such as reading, using
brain training apps and social
activities can help keep you active
and alert. Physiotherapists also play
a key role in this area, and OTs will
often work alongside your physio to
assist with your physical health and
mobility.
MOBILITY EQUIPMENT
If you are experiencing falls regularly,
or feeling more unsteady on your
feet, you may wish to consider
wheeled-mobility aids such as a
mobility scooter or a wheelchair.
There are many factors to consider
when investigating mobility
devices. Your OT can work with you
to ensure the most suitable device
is selected.
WHAT TO DO IF YOU
EXPERIENCE A FALL
Try to remain calm. If you have
spoken to an OT before, take a
moment to revise your action plan
before rising. It is important to keep
yourself and those around you safe
if you do experience a fall. An OT can
provide you with strategies to help
you stand from the floor safely.
If you would like to discuss these
strategies further, please contact
the OT department on 9365 4854,
and we will work with you to identify
the approaches that best suit
your needs.
REBECCA VAN NOORT
MSWA OCCUPATIONAL
THERAPIST
14

SPEECH PATHOLOGY
COMMUNICATING WITH THE USE
OF TECHNOLOGY: WHAT’S NEW?
Communication is a fundamental human right as declared by Article 19 of the Universal
Declaration of Human Rights. At MSWA Speech Pathology, we whole-heartedly agree with
this and strive to ensure that all Customers of MSWA Speech Pathology are provided with
best practice advances in all areas of communication.
For many of our Customers, as
their condition progresses, they
start to communicate with AAC
(Augmentative and Alternative
Communication). As technology
has become more advanced,
devices have become more
sophisticated. We endeavour to
ensure that we have the most
up-to-date knowledge of these
devices to support those who need
this technology.
We have been fortunate to have
Customers receive funding for
a NeuroNode device by Control
Bionics. The NeuroNode is a
wearable switch, which connects
via Bluetooth to a computer
communication system. The
NeuroNode’s sensors sit on the
surface of the skin, located on a
muscle chosen to be the switch.
When the client tenses the muscle,
the NeuroNode detects the EMG
signal (even if you cannot see the
muscle move). The muscles do not
need to be functional at optimal
levels as the NeuroNode responds
to extremely minimal signals.
The device uses either scanning
or eye gaze coupled with the
NeuroNode to deliver access to
communication which is easier to
use and allegedly less fatiguing
than others in the market. Other
devices which have also proven
effective for our customers are
the iPad Pro with head tracking
and switch control, and of course
eye gaze systems, which are
constantly being updated and
made more accessible.
In addition to using the device to
communicate with those in your
immediate environment, these
devices can be used to send text
messages, access Facebook, email,
YouTube, navigate the web, and
control your environment (eg turn on
TV/lights etc).
If you want to know more about these
remarkable advances in technology,
please contact Speech Pathology
at MSWA on 9365 4888 or via email:
CustomerService@mswa.org.au.
PAMELA WINDRAM
MANAGER SPEECH PATHOLOGY
& DIETETICS
15

COUNSELLING, SPEECH PATHOLOGY AND DIETETICS
TELEHEALTH AT MSWA
To remain connected to our Customers during the peak of the COVID-19 pandemic, MSWA
introduced Telehealth. By utilising telephone and different online platforms we have been
able to maintain most services and continued to provide support during the challenging
period. Telehealth is a service we will continue to use.
TELEHEALTH COUNSELLING
ROB ORR – MSWA COUNSELLOR
Telehealth counselling is any
provision of counselling that does
not occur ‘face to face’ with the
counsellor and client sitting in
the same room. It includes video
conferencing solutions such as
Skype, Zoom, Webex and FaceTime;
phone calls and text; chat and
email conversations. At MSWA, our
Telehealth service delivery covers
one-to-one counselling as well as
couples, family and group sessions.
There are several advantages of
Telehealth counselling. The most
obvious advantage currently is
reducing the risk of contracting
and spreading a contagious illness.
COVID-19 has been the main driver,
but the flu season is here so there is
no better time to embrace this way
of receiving services.
Other advantages include accessibility,
convenience, and anonymity. As
Telehealth appointments typically do
not require travel, they work well for
clients in more remote areas, as well
as Customers who have some physical
limitations making travel more difficult
or time consuming. They can often be
scheduled at more convenient times
for the same reason. Telehealth also
benefits Customers who may have to
overcome emotional as well as physical
barriers to face-to-face counselling.
Some Customers experience
anxiety leaving home to attend
an in-person appointment, and
Telehealth also provides greater
‘invisibility’ compared to an inperson
counselling appointment.
Customers who have speech
difficulties but can type what they
want to say can benefit from the
alternatives of Telehealth which rely
on this medium –- such as text, chat
and email.
Although some Customers may
prefer personal contact, there is a
growing body of research showing
online counselling can have the
same positive impact as face-toface
counselling sessions.
TELEHEALTH SPEECH
PATHOLOGY AND DIETETICS
PAMELA WINDRAM –
MANAGER SPEECH PATHOLOGY
AND DIETETICS
During the COVID-19 period, the
Speech Pathology and Dietetics
department were able to continue
to provide services to Customers
via Telehealth, with no Customers
being disadvantaged by the
change in circumstances. Speech
pathologists were able to provide
support to Customers with
dysphagia, voice therapy, language
therapy and AAC (augmentative
alternative
communication)
therapy. The dietitians were able to
provide assessment and support to
Customers with dietary concerns.
The speech pathologists were well
supported by Speech Pathology
Australia during the period, with
enormous amounts of support and
updates on best practice advice on
Telehealth services. We were able to
complete a course in assessing and
managing dysphagia via Telehealth
which was invaluable. We have
also completed an 8-week poetry/
voice group to our Customers
via telehealth.
We will continue to offer therapy
over Telehealth as required,
especially to those in remote areas
with the lessons learnt during the
unusual times we experienced.
If you are interested in accessing
services via Telehealth, please
speak to your MSWA allied health
professional.
16

MSWA MEMBER
I MET
A DOG
I was heading down the
street near my place in my
electric wheelchair, when
I saw an exceptionally
large, shaggy Old English
Sheepdog tied to the
fence across the road from
the newsagency.
I’ve been a dog lover all my life and
couldn’t resist stopping for a pat
and a chat with him. I put out my
hand first so he could sniff it and
ascertain that I was friendly, then
proceeded to pat him and scratch
him behind the ears, which he
seemed to like.
Within a minute or two a gentleman
came out of the newsagency
and crossed the street to join
us. He was the dog’s owner, and
introduced himself as David, and
the dog as Edward. It turns out
the dog’s real name is Malizioso
The Flying Dutchman as he is
a pedigree show dog, and they
always have interesting names, but
he is colloquially called Edward.
(Malizioso means mischievous
in Italian. I can vouch for its
appropriateness!) We spoke a few
niceties, as you do when you first
meet someone, then David asked,
“So what is your ailment? Why are
you using a wheelchair?"
Immediately I was impressed with
this gentleman. Over the years I have
experienced all sorts of discomfort
from other people when they see
me in my wheelchair, ranging from
not being able to look me in the eye,
ignoring me completely, to chatting
awkwardly but pretending the chair
doesn’t exist. It was so refreshing
to have someone come right out
and ask me directly about my
condition. I explained to him that I
have multiple sclerosis, and over the
years my legs have been affected
and become weaker until I can no
longer walk.
David asked a few questions,
then mentioned that he knew
someone who lived in one of
MSWA’s high-support residential
facilities. Coincidentally I know
this person quite well, which gave
us another topic of conversation.
While we were talking, I continued
to pat Edward, then David untied
his leash from the fence. Edward
promptly attempted to climb onto
my knee and lick my face! It was a
bit like having a big hairy washing
machine climbing onto one’s knee!
It was clear I had made a friend. In
fact, that day I made two friends,
and David and I have continued
to spend time together and enjoy
each other’s company immensely. I
am slowly being educated into the
world of show dogs and learning
just what a serious business it all is.
I grew up on a farm and we had
working dogs. Then I left home to
study, and built a life of my own.
I have nearly always had a dog
as a pet, but they have always
been mixed breed bitsers, with
short hair and few maintenance
requirements. I love dogs and have
come to love Edward too, and even
tolerate his obsession with licking
my toes! I am grateful to Edward,
because he is the catalyst that has
brought a new friend and a new
interest into my life.
17

MSWA MEMBER
REACHING ACCEPTANCE AND
LOOKING TO THE FUTURE
Diane King was on the long road to recovery from an horrific work accident, when a routine
MRI returned a result that no one was expecting.
Prior to the accident, Diane was
fit and healthy. She went for ten
kilometre walks in the South West,
and was often up and down ladders
as part of the cleaning business she
still operates. In 2016, Diane was at
a client’s home when she stepped
into a dark room, unaware that
she had opened the door onto a
set of stairs with no landing. She
tumbled down the stairs and into
the basement.
“My arm snapped on the way
down and I was knocked out,”
recalls Diane.
Her colleague rushed her to
hospital, where she underwent
emergency surgery on her arm. Her
lower back was significantly bruised
and she had lumps on her head.
Eight months later, she had begun
to recover. A friend questioned why
Diane had never been offered a
scan to check her head for damage.
So, Diane booked an MRI. When
the results came back, Diane was
sent to a neurologist to commence
treatment for MS.
“My world fell apart,” says Diane. “I
was still dealing with the injuries
from my accident and now this.
“I was devastated. How? Why?
When?”
She was diagnosed in 2017 and Diane
has good and bad days depending
on factors such as weather, stress
and physical challenges. She
finds it difficult to walk more than
50 metres and she suffers from
muscle stiffness.
She regularly attends the gym at
the MSWA Vasse Service Centre,
which was relocated to its new and
superior site in 2019. Diane trains
with a physiotherapy assistant –
currently on a one-on-one basis
due to COVID-19 precautions.
Her main focus is keeping her
body free from stiffness, for which
she follows a reformer, bike and
stretching routine.
When she first reached out to
MSWA, the Customer Engagement
Team advised Diane how to apply
for NDIS funding. Because of the
permanent back damage from her
accident, Diane had been seeing
her own physio for some time. She
is now being treated with funds
provided through a self-managed
NDIS plan.
“My physio has been with me
through the whole journey. I went
to her for my injuries and now she
treats my MS.”
Diane has now been living with MS
for over two years, and it has been a
period of adjustment.
“It’s about knowing your limits,”
she says.
For example, she will anticipate that
a spell of hot weather will make her
very fatigued, which is a common
experience for most of those living
with MS, and it can also worsen
other symptoms.
Diane is still running her cleaning
business, saying it keeps her active
but that it’s also quite taxing on
her body.
18

“I look after myself a lot
better. I eat healthier.
My hope is to live as
independently as
possible for as long as
possible. I know there
are services for more
high dependency, but
I’m not ready to think
about it just yet.”
Diane has done a lot of research into
a possible link between physical and
emotional trauma and the onset of
MS symptoms. Scientific evidence
on this connection is mixed. The
results of one study did suggest a
statistically significant association
between head trauma as an adult
and the risk for developing MS. 1
However, cohort studies did not.
MS is multifactorial, with a strong
autoimmune component. Things
like genetic susceptibility and
environment also need to be taken
into account.
“Before my accident, there were
absolutely no symptoms. After the
accident, I was really, really messed
up. Lumps all over my body. I do
believe there is a connection.”
Diane is grateful to be surrounded
by a small but supportive group of
people. She lives in Dunsborough
with her teenage daughter and
son, who this year celebrated his
21st birthday in an unexpectedly
low key way due to the COVID-19
social restrictions, but they all
enjoyed marking the milestone. Her
eldest daughter lives in Perth and is
expecting a baby very soon.
“I used to go bodyboarding in
the surf. I don’t do that anymore.
But I can snorkel and I’ve always
wanted to swim with the whale
sharks. I go for beach walks and set
goals to build up stamina. I think
it’s important to give yourself a
challenge every single day, to keep
that level up.”
Diane also loves photography and
wants to do more of it in the future.
“I used to be able to go down bush
tracks and clamber up onto rocks
and ledges to take photos, now I
have to take the more stable tracks.”
Above all, Diane is looking forward
to being a grandmother. Due to
COVID-19 precautions, she knows
she might have to wait a while for
that first cuddle, but these days she
has reached a level of acceptance
about life’s curve balls.
“The thing with MS is
you literally have no
idea what your future is.
We just have to go
with the flow and see
what happens.”
1
Lunny, C.A., S.N. Fraser, and J.A. Knopp-Sihota. “Physical trauma and risk of multiple sclerosis: A systematic
review and meta-analysis of observational studies.” Journal of the Neurological Sciences 336 (2014) 13–23.
19

BRAND, MARKETING & SALES
WHAT’S ON
HIP HOP YOGA
Thursday 30 July (Online Event)
Join us on Thursday, 30 July to
celebrate International Day of
Friendship with some Hip Hop
Yoga run by WA’s queen of Hip Hop
Yoga, Kaye Waterhouse. This online
session aims to raise awareness
and funds for people living with
a neurological condition in
Western Australia.
Sign up to take part at
mswayoga.org.au
MSWA MEGA HOME LOTTERY
August
The MSWA Mega Home Lottery
will be back in August. And this
time, we’ve got a stunning Webb &
Brown-Neaves home in gorgeous
City Beach AND one million dollars in
cash to giveaway. All that’s missing
is you! Every ticket sold helps
fund vital services and support for
West Australians living with
neurological conditions.
Visit mswalottery.com.au
MS READATHON
August
Embark on an epic adventure this
August! The MS Readathon inspires
kids to read as much as they can, all
for an incredible cause. This year’s
MS Readathon will be a magical
quest, and the adventure kicks off
on August 1 and wraps up on August
31. Children can register with their
school or individually.
Best of all, kids joining our quest
will not only nurture their love of
reading, they will also be helping
kids who have a parent with a
neurological condition.
Register online at
msreadathon.org.au/MSWA
20

CENTRAL PARK PLUNGE
Sunday 8 November
The Central Park Plunge is a unique
team building opportunity for you,
your friends, family or colleagues.
Or simply the chance to tackle a
personal challenge and abseil 220
metres down Perth’s tallest building,
Central Park. All while making a
real difference to the thousands of
Western Australians living with all
neurological conditions.
If you’d like to join us on Sunday
8 November, registrations are
now open:
registration.everydayhero.com/ps/
event/CPP2020MSWA
MSWA OCEAN RIDE
Sunday 22 November
Get ready for the MSWA Ocean
Ride! This November, cheer on
participants in the eleventh annual
MSWA Ocean Ride, an iconic cycling
event that takes riders along WA’s
beautiful coastline from Fremantle
to Hillarys.
Speak to your physiotherapist about
the annual Members Ride, in which
MSWA Customers who are living
with a neurological condition can
get involved during their weekly
physiotherapy classes.
Of course, we’ll also be offering
the Stationary Cycle Challenge.
Last year our Butler, Rockingham,
Mandurah, Wilson, Geraldton,
Albany, Beechboro and Kelmscott
Centres all took part. Speak to your
local outreach coordinator to find
out how to join the team.
Find out more:
mswaoceanride.org.au
MSWA FEEDBACK
We recently surveyed the market on its awareness of MSWA, asking
various questions to a range of our Customers, fundraisers and the
general public and how well they knew our brand. I am very pleased
to report that the general population’s awareness of MSWA as a
provider of services and support to those living with all neurological
conditions in WA has risen from 72% when we last surveyed
people in 2018, to 83%. It shows that the message is getting out
there, enabling us to extend our support to more and more people.
‘Metrix’, the independent organisation that performed the survey
for us, reported “MSWA is performing strongly overall, surpassing
healthcare benchmarks with high values of satisfaction.”
MARCUS STAFFORD
CEO
We also have the wrap up of the Customer Satisfaction Survey in this
edition of Bulletin. Please turn the page to see the results.
Thank you to everyone who took the time to participate in these
surveys for continuing to help us improve.
21

BRAND, MARKETING & SALES
MSWA CUSTOMER SATISFACTION
MSWA invited Customers who received at least one service from us in 2019 to give us
their feedback. We were delighted that 491 of you took the time to complete our survey.
The results help us to understand how we are performing year on year, and identify areas
for improvement, so thank you!
OVERALL
SATISFACTION
WITH MSWA
Dissatisfied
6%
Very Dissatisfied
2%
NET Satisfied
Satisfied
37%
Very
Satisfied
55%
92%
There is no difference in
satisfaction between those
who are on NDIS funding and
those who are not.
LIKELIHOOD TO
RECOMMEND MSWA
(NET PROMOTER
SCORE)
MSWA Customers
were asked on a scale
of 0 to 10 whether they
would recommend
MSWA to someone else
MSWA NPS
+45
MSWA’s NPS is above
service provider
benchmarks in WA
80 % of MSWA Customers
60
40
20
0
15
Detractors
(0-6)
25
Passives
(7-8)
60
Promoters
(9-10)
Net Promoter Score = % Promoters – % Detractors
SENTIMENT
HOW CUSTOMERS FEEL
TREATED BY MSWA
No Sometimes Yes
Treated with dignity
and respect
Listened to
Valued
98%
95%
93%
20 0 20
40 60 80 100
% of MSWA Customers
22

SATISFACTION WITH QUALITY OF SERVICE BY SERVICE
Very Dissatisfied Dissatisfied
Satisfied Very Satisfied
NET
Satisfied
Counselling 99%
Speech Pathology
95%
WHO RESPONDED
SERVICES USED
Online Phone TOTAL
Service n= % n= % n= %
Dietetics
Physiotherapy
Occupational Therapy
94%
94%
93%
Nursing 219 64% 92 61% 311 63%
Physiotherapy 222 65% 80 53% 302 62%
Occupational Therapy 176 52% 58 39% 234 48%
Nursing
Individual Options
Social Welfare
40 20 0 20 40 60 80 100
% of MSWA Customers using a service
92%
91%
91%
Individual Options 119 35% 55 37% 174 35%
Social Welfare 131 38% 42 28% 173 35%
Counselling 105 31% 20 13% 125 25%
Speech Pathology 96 28% 27 18% 123 25%
Outreach 43 13% 27 18% 70 14%
Accommodation 26 8% n/a n/a 26 5%
SATISFACTION WITH SKILLS OF STAFF BY SERVICE
Very Dissatisfied Dissatisfied
Satisfied Very Satisfied
Counselling
NET
Satisfied
97%
Respite 16 5% 8 5% 24 5%
TOTAL 341 69% 150 31% 491 100%
AGE
GENDER
Physiotherapy
96%
Speech Pathology
96%
18-34
Female
Nursing
95%
35-54
Dietetics
95%
Occupational Therapy
SATISFACTION WITH AVAILABILITY BY SERVICE
Very Dissatisfied Dissatisfied
Satisfied Very Satisfied
Outreach
(opening hours)
Counselling
Speech Pathology
40 20 0 20 40 60 80 100
Nursing
Dietetics
Social Welfare
% of MSWA Customers using a service
95%
NET
Satisfied
97%
96%
92%
90%
89%
89%
55+
Less than
one year
More than
one year
LOCATION
Metro
Regional
0
LENGTH OF TENURE
0
20
20
40 60 80
% of MSWA Customers
40 60 80 100
% of MSWA Customers
Male
CONDITION
MS
ONC
0
0
20
20
40 60 80
% of MSWA Customers
40 60 80 100
% of MSWA Customers
Physiotherapy
Occupational Therapy
89%
88%
0 20 40 60 80 100
% of MSWA Customers
40 20 0 20 40 60 80 100
% of MSWA Customers using a service
23

BRAND, MARKETING & SALES
MSWA’S READATHON HEROES
The MS Readathon inspires kids to read as much as they can for the month of August, all
for an incredible cause. We spoke to some of the children in our Customers’ lives about why
they are taking part this year…
WILLOW IS DOING READATHON
FOR HER DAD, MATT, WHO LIVES
WITH MS.
How old are you, Willow? 8.
What book are you reading at
the moment?
‘Harry Potter and the Order of the
Phoenix’. It’s the biggest one!
Who is your favourite Harry Potter
character?
I have two favourites – Hermione
Granger and Luna Lovegood –
because they both know a lot.
Do you have any tips for the other
kids taking part in Readathon?
One way to understand words
when you’re reading alone is to
sound them out. It makes reading
a whole lot more fun!
RUBY IS DOING READATHON FOR
HER GRANDAD, BOB, WHO LIVES
WITH PARKINSON’S DISEASE.
How old are you, Ruby? 11.
What do you love about doing
Readathon?
I like to read lots of books and I
love to think that my participation
will help the people affected by
neurological conditions.
Why do you think raising funds for
MSWA is important?
I think it is important because it will
help people like my grandad Bob to
live the life that they choose.
Do you have any tips for the other
kids taking part in Readathon?
You need to find the books that
interest you the most and commit
to reading them!
What is your favourite book?
Though I love to read books about
World War II, my favourite book
would be a book called ‘Ugly’ and it
is about a boy with face deformities
trying to fit in.
SOPHIA, MARIO, CLAUDIA AND
CHRISTIAN ARE DOING READATHON
FOR THEIR DAD, MICHAEL, WHO
LIVES WITH MS.
How old are you?
Sophia is 10, Mario is 8, Claudia is 6
and Christian is 2.
What do you enjoy about reading,
Sophia?
Reading allows me to get lost
in another world. I love reading
fantasy and my favourite books are
Harry Potter.
What are your favourite types of
books, Mario?
I like reading non fiction books. I
like facts and information. I love
learning about deadly animals and
world records.
Why do you love reading, Claudia?
Because I get to snuggle with mum
and dad.
Funds raised from the MS Readathon will help fund vital support services in WA.
In particular, the focus is on our special Family Camps and Fun Days. These camps provide an
opportunity for kids who have a parent living with a neurological condition like multiple sclerosis
or Parkinson’s disease, to spend quality time with their family, learn more about the condition their
parents have and bond with other kids who are sharing their journey.
The MS Readathon is such a wonderful way for kids to help other kids, all while falling in love with the
wonder and magic of reading.
TO SUPPORT OUR READERS, VISIT msreadathon.org.au/students AND SEARCH FOR WILLOW NICHOLS,
RUBY HILLMAN AND SOPHIA, MARIO, CLAUDIA, AND CHRISTIAN RUGGIERO
24

A BAZILLION
A BAZILLION
EPIC
EPIC
ADVENTURES
ADVENTURES
FOR ONE INCREDIBLE CAUSE
AUGUST 2020
WWW.MSREADATHON.ORG.AU
(08) 6454 3164 | msreadathon@mswa.org.au

VOLUNTEERING
VOLUNTEER UPDATE
DAWN BURKE
VOLUNTEER COORDINATOR
Hello, all. So much has happened since we last chatted. This Bulletin is riding on the coattails
of the COVID-19 pandemic, which has seen restrictions put in place; and many now being
removed. It is amazing how so much can happen in such a short period of time. I am looking
forward to getting back into the everyday running of our volunteering again, here at MSWA.
I know my volunteers will be itching
to get back into it too, or maybe
you have enjoyed the break and
the slowing down of the everyday
pace. I know I have. Because I am
lucky enough to have two roles at
MSWA, I have worked from home
for a couple of days and have been
privileged to continue to support
our Members and Clients in the
community. It was great to keep
doing what I love, even if it looked
different than before.
All going well, by the
time this Bulletin hits
the letterboxes, most of
our groups will be back
at the Outreach Centres
and filled with your lovely
smiling and bubbly faces.
As you will read on the next page,
Mary, our lovely Wilson kitchen
volunteer who turned 90 last year,
decided to hang up her apron for
the last time before our kitchen
closed in March. Mary will be sorely
missed, and we greatly appreciate
the service and dedication she
has given to MSWA for the past
fifteen years.
It was National Volunteers Week 18
May until 24 May, which we were
unable to celebrate in style with
a luncheon as we have done in
previous years. The slogan this year
was ‘Give a little, change a lot’, which
I thought was very fitting. And just
because we couldn’t celebrate it
in person, doesn’t mean you were
forgotten. I reached out to all of you
during this time and thanked you
for the marvellous job that you do for
our Customers and staff at MSWA.
We may not have been able to see
you, but we certainly do appreciate
you and thank you for your time
and service to the organisation.
Many a holiday and other plans went
awry during this unusual time. I was
meant to be attending a wedding
in England via Ireland and Scotland,
but alas, I couldn’t go. I just had a
different holiday. I walked the ‘Cape
to Cape’ for the second time with
my brother. I called it the ‘Freakin’
Awesome Cape to Cape Rainbow
Tour’. We had rainbows every day,
sometimes double rainbows. What
a beautiful state we live in..
I look forward to seeing you all
soon. If you would like to discuss
any volunteering opportunities or
have a friend or two who may like to
volunteer with us, please give them
my details and we can have a chat.
volunteer.coordinator@mswa.org.au
or 9365 4843.
I trust this Bulletin finds you all fit,
healthy, well-rested, and ready and
raring to go.
Take care, keep smiling and bye
for now.
DAWN BURKE
VOLUNTEER COORDINATOR
26

MARY SAYS ‘CHEERIO!’
Six months after celebrating her 90th birthday (pictured below), Mary Cross has announced
her retirement, after fifteen years as a volunteer at the MSWA Wilson Outreach group.
Mary said, “It feels like the
right time.”
Mary joined us in 2004. She had
no personal connection to MS at
the time, but was looking for a
new volunteering opportunity. Her
granddaughter mentioned that a
friend’s mother was volunteering
at MSWA. “They’re always needing
volunteers,” she told Mary.
After an initial interview, Mary
started at the weekly Outreach
group at our Wilson Service Centre.
“I started in the common room,
doing the coffee,” recalled Mary.
“When a gentleman wanted to take
that over, the coordinator suggested
I talk to the Members, but I’m not a
very good conversationalist!
“Then they were short in the kitchen
and asked me to help. ‘Ooh yes,’ I
said, ‘that’d be great.’”
At first, a young student ran the
kitchen and Mary helped set up for
making the sandwiches. He then
left, and Mary was in charge. Every
Thursday for fifteen years.
“I would catch the bus from home
into town, then get another bus to
the Wilson Centre. I always had a
good day. I would write in my diary
every Thursday ‘I had a good day
at MSWA.’
MSWA Senior Volunteer Coordinator, Nicola Ryan, and Mary Cross at her
90th Birthday Morning Tea. (October 2019).
“MSWA does everything
right. It was always so lovely
to see the Members come
in and have their lunch.
Marcus Stafford would
often come along and keep
us informed of how well
everything’s going.”
The team at Wilson offered to give
Mary a send-off, but she insisted,
“I’m not a party person. I don’t want
a fuss.”
Mary is looking forward to having
more free time in her 90s to
do the things she enjoys. She
goes on outings with her family
and is a member of an over-55s
walking group. She has twin greatgranddaughters
in Sydney who she
cherishes: “They keep me in touch
with things.”
The staff and volunteers we spoke
to at MSWA Wilson say they will
miss having Mary in the kitchen
on Thursdays, working so hard
and never seeking recognition.
They spoke in admiration of her
independent spirit, noting that
she never missed a Thursday, even
when the Outreach was off-site for 9
months due to renovations. MSWA’s
senior volunteer coordinator said,
“Nothing ever seems too much
trouble for Mary. She is one in a
million!”
If you would like to know
more about becoming a
regular volunteer for MSWA,
please call 9365 4843 or email
volunteer.coordinator@mswa.org.au
to discuss the current opportunities
available.
27

ACCOMMODATION & OUTREACH
HAMILTON HILL SUPPORTED
ACCOMMODATION NEWS
Our wonderful residents have always been proud of their lovely homes, and the surrounds,
at Hamilton Hill; as are the great staff. Now we have another reason to show off about our
facility; a beautiful re-vamped kitchen in the original site.
We now have a larger, more
functional, modern and high quality
kitchen where residents’ meals, and
our famous catering for special
events, can be even better – if that’s
possible!
Thanks to the generosity of a
group of donors at last year’s MS
Dinner Auction, and the interior
design skills of Andrea Taylor, this
makeover has been better than we
could have imagined.
As they are now open, we have
the enviable opportunity to hit the
shops to get the right accessories to
add the finishing touches!
JAYNE O’SULLIVAN
MANAGER HAMILTON HILL
Refurbished kitchen at the MSWA
Hamilton Hill residential site.
TREENDALE GARDENS NEWS
Treendale Respite open again!
Having been closed for respite for
several weeks we are all glad to say
“we’re open for respite again”, and
we would love to take your booking!
The COVID-19 precautions and the
Government’s closing of intrastate
borders with the creation of zones,
resulted in us closing respite. Now
many restrictions have been lifted
we are pleased to say we are open
for bookings for the respite house
and the family unit.
If you have never been to Treendale
Gardens for respite, we are situated
in lovely surrounds in Australind,
close to a park and local shops,
and 20 minutes out of Bunbury.
Our friendly staff are experienced
in providing support and care for
people living with moderate and
high care needs due to MS and
other neurological conditions.
The respite home has six bedrooms,
three bathrooms, communal lounge
and dining areas, and outside
courtyards. The family unit is selfcontained
with three bedrooms and
two bathrooms, large communal
areas and outside courtyards. The
homes are fully accessible and we
have care support staff onsite 24/7.
For bookings and other enquiries
please don’t hesitate to call
our friendly staff – Linda, Paula
or Jenny on 9725 9209 or email
treendale@mswa.org.au.
PAULA KENNEDY
COORDINATOR SUPPORTED
ACCOMMODATION TREENDALE
28

WHAT ABOUT THE CAMPS?
We have not forgotten the camps! We know what the camps mean to our Members,
especially those who have had the opportunity to participate in them over the many years
we have run them. Unfortunately, like many things, COVID-19 resulted in the planned camps
being cancelled, but we can’t wait to get them started again when it’s safe and appropriate.
They are a place to de-stress, laugh,
and to enjoy the company of
friends or to make new ones. A brief
getaway can make a very positive
difference, especially for the carers.
Lotterywest has been very generous
over the years, giving us a grant
each year, and once again they
have provided funding to support
our camps program, supporting
Members, carers and families.
Camps will happen again but, as I
write this, I cannot say exactly when.
It may be possible for us to run
single-day events that are fun and
can bring people together. How
long has it been since you had a
day at the zoo, or watched a sunset
while enjoying fish ‘n’ chips? If
you would like to be informed
of any single-day events, please
contact Dawn Burke by emailing
dawn.burke@mswa.org.au.
I would also like to say a huge thank
you and belated farewell to Sumit,
who left MSWA in January to take
up other opportunities. Sumit was
with MSWA for nearly 10 years. He
facilitated the camps for many
years and made sure that everyone
was safe, well fed and had fun on
the camps. The good news is that
Dawn, his offsider at camps, is still
here and ready to welcome you
back again.
Much of the time staff spend
on camps is voluntary and
the support carried out by
staff and volunteers attending
the camps is what makes it
possible to run them.
SANDRA WALLACE
MANAGER WORK, HEALTH,
SAFETY AND SUPPORT SERVICES
Sumit Sandhu enjoying a carers’
camp on Rottnest Island, Feb 2016.
WOULD YOU
LIKE TO RECEIVE
THE BULLETIN
ONLINE?
Register your email address today to start
receiving our monthly Vitality e-newsletter
or the Bulletin magazine online.
Email damien.hill@mswa.org.au or call 9365 4814
and let us know your current email address,
or to update your contact details.
29

INDIVIDUAL OPTIONS
STAYING CONNECTED
TO OUTREACH
Our Outreach participants have always commented about
how much they really enjoy their weekly outings to our MSWA
hubs. Part of the reason is the array of different activities,
themed days and excursions. However, as we know, the last
couple of months have meant that the Outreach doors had
to temporarily close to ensure the safety of all our Customers
during the pandemic.
Christine Weston,
MSWA Support Worker.
This wasn’t just something that
affected our Outreach participants,
but also the wonderful staff who
work within the groups. “It’s
amazing how much you can miss
that regular contact,” stated several
of our Customers and staff. To
address that, some of the Outreach
staff started contacting our
Outreach participants to see how
they were doing.
This proved to be very successful
and welcomed by all. The Outreach
staff from Albany, Beechboro,
Rockingham and Wilson have
now been calling our Outreach
members on a weekly basis. The
staff were able to have a chat
with Customers about what they
have been up to during this break
and to share stories about life in
temporary isolation. A number
of our Customers said that they
appreciated these calls as it made
them know that they were valued
and had not been forgotten.
Jackie Dinsey,
MSWA Support Worker.
Overall, the feedback to staff was
that the weekly calls were
something that so many of our
Customers looked forward to, and
the staff reported having really
enjoyed their one-to-one phone
catch-ups. Staff commented that
they learned a lot of new things
about several of our Customers by
having that valued time to sit and
talk at length about a number of
topics. This has been one of the
biggest positives to come out of
a situation that was outside of
anyone’s control and had changed
in a short period of time.
Some comments that we received
included:
“Thrilled with the call, it’s my
favourite part of the day”
“I was feeling very down before you
called, now I’m feeling so much
better”
“I really look forward to a Monday
when I know you are going to call”
“I miss seeing my friends at
Outreach”
The staff within the Outreach hubs
echo these comments. We have
really enjoyed having these catchups
and we are very much looking
forward to seeing everyone again
when our Outreach centres open
back up.
And from what we are hearing, it
is looking at being sooner rather
than later that we are going to be
able to open the doors to Outreach.
Customers will come flowing back,
and our buildings will be abuzz with
happy chatter and laughter again.
30

COVER STORY
In March and April, we ran a series on social media called #AtHomeWithMSWA, in which we
checked in with members of our MSWA community to see different versions and perspectives
of self-isolation. Here is a small selection…
WENDY WILSON
“What am I most looking forward
to? Cuddling the grandies again.”
Wendy is in high support care at
our Butler facility. The introduction
of strict hygiene and social
distancing measures proved initially
challenging, but residents and staff
quickly adjusted.
“There is a ‘can do’ attitude at Butler,”
says Wendy. “You couldn’t get more
dedicated staff. Sometimes I joke
with them, ‘Come on girls, go home.
You’ve got to get a life!’
“We’re lucky here, we can sit out in
our own backyards. My plants are
getting a lot of attention!”
However, Wendy admits she
is struggling with maintaining
physical separation from friends
and family.
“It’s highlighted the things we take
for granted – somebody popping in
for a coffee, or even the more simple
things, like hugs.”
BRETT JOHNS
Brett Johns has been living with
MS for over 20 years. He is also
a musician.
“Music is my life. It’s my saviour. It’s
such a wonderful healing force.
I usually play my Ukulele at MSWA
Bunbury Outreach Centre where I
go to meet, talk and share my music
with others.
I was starting to get a musical thing
happening at ‘The Fridge’ – that’s
what I call the outreach centre,
because it’s where I go to chill!
It’s currently closed, but that’s
okay because I’ve been playing a lot
at home.
I’m still receiving in-home care by
the MSWA crew and it’s good to
be able to socialise with someone.
To all you reading this, the staff at
MSWA, thank you for continuing to
do what you do.
PS Excuse the hair – I need a shear,
but I guess we’re all in the same boat.”
MSWA HAMILTON HILL
“As you can see social distancing
is the new normal, as well as
board games.”
We caught up with Jayne, the lovely
manager from MSWA Hamilton Hill,
to see how our residents are doing
self-isolating together.
“We are all doing great here and
have all kept our sense of humour.
Hope you are keeping safe and well.”
Read all the At Home
With MSWA features here:
mswa.org.au/at-home-with-mswa
31

TAKE A BREAK
IN THE SOUTH
WEST.
WHATEVER YOUR NEURO, WHATEVER YOUR NEEDS, WE ARE READY.
Whether you or a loved one need a break from daily routine, we have a range of
rooms with 24-hour care at MSWA Treendale Gardens Respite for a much-needed break.
Call us on 1300 097 989 or visit mswa.org.au/residentialrespite to find out more.