MWSA Bulletin Magazine Autumn 2022

THE OFFICIAL MAGAZINE OF MSWA
Autumn 2022
mswa.org.au
INSIDE
/ MSWA Albany is open!
/ The value of acceptance
in challenging times
/ NDIS support in an age of COVID
MSWA Albany staff dancing the can-can
on first seeing the completed interior of
their new Services Centre!
/ Pain and pain management
series: Part 4

NURSING
WILSON CENTRE
29 Parkhill Way 9365 4888
Fax 9451 4453
Freecall 1800 287 367
See Health Team Dept contacts on this page
SERVICES DIRECTORY
GENERAL MANAGER –
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
GENERAL MANAGER -
STRATEGIC SUPPORTS
AND RESIDENTIAL OPTIONS
Sue Shapland 6454 3174
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, Tracey Hockey and
Nicolette Murphy.
CONTRIBUTORS
Geoff Hutchinson, Carol Chong,
Dajana Tesevic, Vanishree Chetti,
Denise Vogels, James Beckett,
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.
Our neurological liaison nurses are usually the first point of contact after the
neurologist’s diagnosis.
VANISHREE CHETTI, MANAGER: 9365 4818 OR 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
2

WELCOME
Welcome to the autumn 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
GENERAL MANAGER
MEMBER & CLIENT SERVICES ....... 6
RESEARCHER IN FOCUS:
GAMING TECHNOLOGY USED
IN STATE-OF-THE-ART
REHABILITATION ROBOTICS . ....... 7
RESEARCH ROUND UP. .......... 8-10
NDIS SUPPORT IN AN
AGE OF COVID. ..................... 11
OT GROUPS 2022 ...................12
SAVE THE DATE! ....................12
MSWA ALBANY HAS
OPENED ITS DOORS!. ...............13
PROTECTING YOURSELF AND
OTHERS IN THE FLU SEASON. ...... 14
KIDS LEARNING ABOUT MS!. ........15
EXERCISE AND PAIN. ............16-18
A COOL PLACE. .....................19
MARGARET’S STORY. ........... 20-21
OUTREACH HAPPENINGS:
WILSON . .......................... 22
OUR NEW FALLS
PREVENTION PROGRAM. .......... 23
VOLUNTEER UPDATE .............. 24
CAMPS UPDATE . .................. 25
THE POWER OF CONNECTION. ..... 26
COVID-19 VACCINATION,
BOOSTERS AND YOU. .............. 27
THE VALUE OF ACCEPTANCE IN
CHALLENGING TIMES. ............. 28
SUBMIT YOUR ARTICLE TO US. ..... 29
FEEDBACK & COMPLAINTS. ........ 29
STAFF LENGTH OF
SERVICE AWARDS. ............. 30-31
3

FROM THE DESK
OF THE CEO
MELANIE KIELY
CEO
As I write this, it has now been two
months since I started with MSWA,
and I have enjoyed working with
the team to face every challenge
(usually COVID-19 related) and
opportunity.
My focus has been on reconnecting
with core Purpose, our staff and
our Clients, which I will continue to
hold as my central goal. If we keep
in touch with what people with
neurological conditions want and
need, we can only do a better job at
meeting our Purpose and staying
relevant to the people we set out
to help when this organisation was
established.
COVID-19 has proved to be
challenging for everyone in WA
as our numbers continue to
increase and I am very well aware
of the stress this has placed on
Clients, staff and their families. I
cannot express my admiration and
appreciation enough for the extent
to which everyone has handled the
uncertainty, the extra work involved
and the reduction in staff levels. At
this stage, thanks to the amazing
planning of our leadership team and
staff, we are managing to continue
to support our Clients and haven’t
had to invoke the ‘emergency
workforce’ position.
This may yet happen but at this
stage we are managing to avoid
this. We have also not had any
significant outbreaks in any of our
residential settings, but we have
had to take precautionary shut
down and isolation measures to
avoid this. Again, thank you to those
residents and staff for managing
these situations so well – proactively
and quickly.
On the funding front, we are
currently in market with our first
Mega Home Lottery for 2022. It is
important to keep remembering
that we do these to fund services
that are currently not adequately
provided or funded through
government. This includes providing
respite, outreach services, education
and early intervention nurses who
provide much-needed support, not
to mention funding vital research.
Having visited our Margaret Doody
Respite House in City Beach, I saw
firsthand what a wonderful relief
it provides our Clients and their
families.
I did happen to lose a game of
noughts and crosses to a crafty
resident who had a better secret
formula than me! I look forward
to looking at our fundraising
approach more broadly to see
how we can both tap into new
sources of funding, and focus and
communicate more specifically on
where we are investing the money
and the benefit it delivers.
Our focus on research
continues and is a critical
one, and I look forward
to working more closely
on a local, national and
international basis to
understand how best to
target our research funding
and how to translate that
into better services for you
our Clients, the people we
exist to support.
In summary, there are so many
opportunities to extend our Purpose
which is what motivates me and
the team at MSWA. I look forward
to sharing more of these over
time and again thank you for your
ongoing support for, and loyalty to,
our Purpose.
4

STRATEGIC SUPPORTS
AND RESIDENTIAL
OPTIONS
SUE SHAPLAND RN, BN, MSCN
GENERAL MANAGER
STRATEGIC SUPPORTS AND
RESIDENTIAL OPTIONS
“Be the reason someone
smiles today.”
(I found this quote
available as wall art!)
It’s good advice, because not only
will you be making someone feel
good, you are actually conserving
energy! Research shows it takes
72 muscles to frown and only 14
to smile. So, making people smile
actually helps them conserve
energy and makes you both feel
good!
These days we all need to find things
to make us smile. There is so much
happening, at home and overseas,
which is ongoing and is certainly
challenging our resolve, so it’s quite
easy to become disillusioned or
disheartened.
Thankfully, we can still find lots to
smile about here at MSWA. Our new
CEO Melanie Kiely is on board and
meeting with as many Clients and
staff as she can, and her enthusiasm
and positivity is contagious.
Albany is open!! Our state-of-the-art
Services Centre opened to Clients in
February and the first residents will
have started moving in when you
receive this Bulletin. Kate Jones, the
manager of the accommodation
facility, is very positive, loves the
facility and can’t wait to share it.
COVID-19 and natural disaster
related freight delays impacted
the arrival of furniture and essential
equipment, which was challenging
but will soon be a memory.
Amongst other things to smile
about and celebrate is our 50th
anniversary in 2022! That’s epic,
considering that in 1972 we started
as a peer support group at a time
when MS was hard to diagnose
(no CT or MRI scans then) and
there were no treatments. What a
difference now, with 12+ treatments
for MS. Our growth in available
services, in Accommodation places,
Services Centres and our ongoing
funding of research are all things to
celebrate.
Moving in day at MSWA Albany
MSWA has grown beyond
our dreams and has,
does, and will, continue to
make a real difference in
so many people’s lives.
As we all continue to face the
challenges of COVID-19 and other
things we need to remember
how important it is to take care of
ourselves and to support each other.
We need to show compassion and
check in on each other. So try and
make someone smile, it doesn’t
cost anything but goes a long way.
5

MEMBER &
CLIENT SERVICES
NICOLA WASHINGTON
GENERAL MANAGER
MEMBER & CLIENT SERVICES
Welcome to the autumn
edition of our Member &
Client Services Bulletin.
I hope you are all staying
safe and well.
I don’t think it is possible to start
this article without the mention of
COVID-19 and the impact we have
seen with the Omicron variant since
it entered WA in February 2022.
There is no doubt that WA is now
well and truly fighting the war on
COVID-19 – really, for the first time
since the start of the pandemic. It is
fair to say we have been lucky to get
this far without the outbreaks seen
over east and overseas, but that
time has passed, and we are now
living with the pandemic in WA and
working on keeping everyone safe.
Our COVID-19 taskforce at MSWA
have been proactive and we are
well prepared with clear procedures
and processes in place to ensure
that we follow the Government
guidelines to manage the delivery
of services. As we see more positive
cases and an increase in isolation
for close contacts, there will be
some disruption to services, but our
priority remains the safety of our
Clients and employees.
Please continue to notify us if
you have any symptoms, are a
close contact, or test positive for
COVID-19, we can then work with
you to ensure we deliver your
services safely.
On the NDIS front, Geoff Hutchinson
has provided an article on page 11
regarding NDIS support through
the COVID-19 period, which provides
some useful insights on funded
supports.
As the number of participants
grows nationally, with now over
500,000 people receiving funding,
the latest federal budget update for
2022-23 estimates the expenditure
on the NDIS will be larger than
what is spent on Medicare Benefits,
with the projection for 2022-23 to
be $35.7 billion ($5 billion more
than Medicare) with an expected
increase to $46 billion for 2025-26.
For more information on the NDIS
and latest news and discussion you
can visit nds.org.au.
I am pleased introduce our
fourth instalment in the Pain
Management series titled ‘Exercise
and Pain’ which can be found on
page 16. Another excellent article
in this series with great information
regarding managing pain, which I
hope you will find useful.
We have also been busy with our
education workshops. We held our
Children’s MS Workshop in January,
which is designed to help children
gain an understanding of the
issues faced by their parent/family
member living with MS. It is a great
program that helps to educate
and inform children in a fun and
informative way.
We have a number of monthly
workshops planned through May,
and monthly support groups
that run at various locations and
also online. Further information
on these workshops and events
can be found on our website
mswa.org.au/support-services/
programs-workshops-events.
Lastly, the exciting news is that
we are finally in our brand new
Services Centre in Albany. The
team are so excited. We have
started our Physiotherapy services
and Outreach has opened.
Accommodation is coming very
soon and we are getting ready to
welcome our new residents.
We will be having an official
opening once everything settles in,
ready to launch our new services to
the Great Southern community.
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.
Stay safe.
6

RESEARCH
RESEARCH IN FOCUS:
GAMING TECHNOLOGY USED IN STATE-OF-THE-ART
REHABILITATION ROBOTICS
The Motor Interventions in Neurological Conditions (MINC) trials are funded by MSWA in
partnership with Edith Cowan University.
Dr Onno van der Groen is leading
the MINC trials at ECU which utilise
modern gaming technology and
an exoskeleton called ‘Mindpod’
to improve health outcomes for
individuals living with neurological
conditions. The MINC trials are part
of a broader Research Program
SPIN (Systematic Profiling in
Neurological Conditions) which
was founded at ECU in 2019 and
has been generously supported by
MSWA since its inception.
Dr van der Groen is a Research Fellow
in the School of Medical and Health
Sciences at ECU, investigating
recovery in neurological conditions
with a focus on motor recovery. His
contributions to research include
emerging technologies of noninvasive
brain stimulation and
rehabilitation robotics.
The Mindpod system uses motion
capture and a digital gaming
system designed to deliver
therapeutic treatments for Western
Australians with upper limb
impairments – a common symptom
for people living with a neurological
condition. The first of its kind in
Australia, the Mindpod could lead
to new opportunities for restoring
and improving upper limb function
for individuals with restricted
arm movement. Besides this, the
Mindpod is now tested in people
with MS to assess if it can improve
quality-of-life.
“The Mindpod motion capture
and gaming system enables fun
exploration and practice using
whole arm-hand movements
to guide a dolphin in a gaming
environment. This immersive
and engaging technology is an
innovative tool for intense training,”
says Dr van der Groen.
A spring-operated exoskeleton suit
provides different levels of antigravity
support, making it easier
for people to move their arms. Data
suggests the arm can move up
to one mile in every session, and
repeated sessions are associated
with coordinated movement
improvement.
A Mindpod system has recently
been installed at the MSWA Wilson
Services Centre to serve a wider
group.
The results of this research project
will hopefully demonstrate the
positive benefits and translate into
a recognised therapy for Clients in
the future.
7

RESEARCH
RESEARCH
ROUND UP
SUE SHAPLAND RN, BN, MSCN
GENERAL MANAGER STRATEGIC SUPPORTS
AND RESIDENTIAL OPTIONS
FROM MS TRUST UK
Read more at: mstrust.org.uk
Recovery from COVID-19 in multiple
sclerosis: a prospective and
longitudinal cohort study of the
United Kingdom Multiple Sclerosis
Register; Garjani A, Middleton
RM, Nicholas R, Evangelou N.
Neurology Neuroimmunology and
Neuroinflammation 2022; 9: e1118.
Most people with MS who develop
COVID-19 have mild to moderate
symptoms and will not develop
serious complications which require
hospital care. However, they may
still experience long-term effects of
COVID-19. This study was designed
to find out how well people with
MS recover from mild to moderate
COVID-19 and the factors that
influence recovery.
7,977 people with MS took part
in the UK MS Register COVID-19
study. People who reported having
COVID-19 were invited to complete
fortnightly questionnaires until
they considered themselves fully
recovered. The questionnaire asked
which symptoms of COVID-19 they
were still experiencing.
Background details about each
participant, previously provided are
held as part of the Register, including
age, gender, type of MS, levels of
disability and mental health status.
The association between COVID-19
recovery and these background
details was analysed to find factors
that might influence recovery.
Results: 1096 participants reported
having COVID-19 and of these, 599
provided regular updates of their
recovery. 28 participants (4.7%) were
hospitalised due to their COVID-19
infection and were excluded from
the final analysis of 571 people.
77.8% reported full recovery from
COVID-19 within the study period.
The average recovery time was 10
days. At least 165 participants (29.7%)
had COVID-19 symptoms which
lasted for more than 4 weeks and 69
(12.4%) for more than 12 weeks.
Participants with pre-COVID-19 selfassessed
EDSS scores greater than 7
(unable to walk more than 5 metres
with walking aid), participants with
probable anxiety and/or depression
before COVID-19, and women
were more likely to report delayed
recovery.
Other MS-related factors such
as disease duration or disease
modifying therapies did not appear
to influence recovery from COVID-19.
More than 80% of participants with
persistent COVID-19 symptoms had
symptoms that were not typical for
MS, such as breathing difficulties,
sore throat, stomach ache and
diarrhoea.
The good news is that most people
with MS who developed COVID-19
recovered within an average of
10 days. About 30% experienced
COVID-19 symptoms for more than
4 weeks and about 12% for more
than 12 weeks. People with higher
disability, mental health problems,
and women were more likely to
experience persistent symptoms.
The authors suggest the results
will provide useful information to
tailor post-COVID-19 rehabilitation.
The results also highlight the
importance of vaccination against
COVID-19 in those who are most
vulnerable to long-term effects of
infection.
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
FROM MULTIPLE SCLEROSIS
RESEARCH REVIEW
Read more at: researchreview.com.au
Hydroxychloroquine for primary
progressive multiple sclerosis;
Marcus W. Koch MD, PhD.
Primary progressive multiple
sclerosis (PPMS) does not respond
well to immunomodulatory or
immunosuppressive treatment.
Chronic activation of microglia
has been implicated in the
pathophysiology of PPMS. The
antimalarial drug hydroxychloroquine
(HCQ) reduces the activity of human
microglia and has neuroprotective
effects in vitro.
A single-arm, phase II futility trial
of oral HCQ given twice daily for
18 months. In an effort to investigate
disability worsening in the absence
of overt focal inflammation, we
excluded participants with contrast
enhancing lesions on a screening
MRI. The primary end point was
≥20% worsening on the timed 25-
foot walk measured between 6 and
18 months of follow-up.
Results: Based on original trial data,
40% of the cohort were expected
to worsen. The study met its
primary end point, as only 8 of 35
participants worsened between
6 and 18 months. HCQ was overall
well-tolerated, with adverse events
in 82% and serious adverse events
in 12% of participants. All serious
adverse events were unlikely related
to HCQ use.
Interpretation: HCQ treatment was
associated with reduced disability
worsening in people with PPMS.
HCQ is a promising treatment
candidate in PPMS and should be
investigated further in randomized
controlled clinical trials.
FROM NEUROLOGY.ORG
Read more at: neurology.org
Global differences in risk factors,
etiology, and outcome of
ischemic stroke in young adults
– a worldwide meta-analysis; The
GOAL Initiative. Mina A. Jacob et al.
There is a worldwide increase in the
incidence of stroke in young adults,
with major regional and ethnic
differences.
A pooled analysis of patient data
from cohort studies, including
consecutive patients with ischemic
stroke aged 18–50 years was
undertaken. The researchers
studied differences in prevalence
of risk factors and causes of ischemic
stroke between different ethnic
and racial groups, geographic
regions, and countries with different
income levels. We investigated
differences in 3-month mortality
by mixed-effects multivariable
logistic regression.
Results 17,663 patients from 32
cohorts in 29 countries were
reviewed. Hypertension and diabetes
were most prevalent in Black
(hypertension, 52.1%; diabetes, 20.7%)
and Asian patients (hypertension
46.1%, diabetes, 20.9%). Large vessel
atherosclerosis and small vessel
disease were more often the cause
of stroke in high-income countries
(HICs), whereas “other determined
stroke” and “undetermined stroke”
were higher in low and middleincome
countries (LMICs).
Patients in LMICs were younger,
had less vascular risk factors, and
despite this, more often died within
3 months than those from HICs
(odds ratio 2.49; 95% confidence
interval 1.42–4.36).
The results also highlight the
dissimilarities in outcome after stroke
in young adults that exist between
LMICs and HICs, which should serve
as a call to action to improve health
care facilities in LMICs.
9

RESEARCH
FROM NEUROLOGICAL
SCIENCES JOURNAL
Read more at: springer.com/
journal/10072
Early implementation of intended
exercise improves quality of life in
Parkinson’s disease patients; Yang
Yang et al.
Recent data has shown that
regular exercise may ameliorate
motor symptoms in Parkinson’s
disease (PD). This study aims to
investigate how intended exercise
impacts motor and non-movement
symptoms of PD.
Eighty-eight patients were
randomly assigned to an early
exercise group (E-EG), late exercise
group (L-EG), or a control group
(CG) using a randomized delayedstart
design. The E-EG carried out a
rigorous, formal exercise program for
1 hour, twice per week, for 18 months
(May 2018–November 2019). The L-EG
took part in the exercise program in
the final 6–12 months of the study.
The researchers assessed outcomes
using a range of assessment tools
and questionnaires.
Conclusion: Implementation of
an exercise regimen improved the
movement abilities and quality
of life in PD patients, especially in
the E-EG. This data supports the
idea that intended exercise should
be implemented as part of the
treatment strategy for PD patients
as early as possible.
FROM THE FLOREY INSTITUTE
Read more at: florey.edu.au
A new drug delays motor neurone
disease progression and improves
cognitive and clinical symptoms
according to recently announced
trial results.
Motor neurone disease is a
progressive, fatal neurodegenerative
disease. Its key hallmark is the
death of the brain cells that control
muscle movements. This results in
muscle weakness and eventually
paralysis. Patients usually die of
respiratory failure within three
years of diagnosis, and there are no
treatments or disease-modifying
therapies available.
A new drug developed by
scientists at the Florey Institute of
Neuroscience, and the School of
Chemistry and Bio21 Institute at
the University of Melbourne has
dramatically improved clinical
and cognitive symptoms of motor
neurone disease, also called
amyotrophic lateral sclerosis.
The drug CuATSM slowed overall
deterioration in MND patients over
six months. Improvements were
seen in lung function and cognition
in some patients. Decline in motor
disability was reduced in treated
patients compared to standard-ofcare
patients
In this dose-finding trial involving
32 patients, the group given the
highest amount of the CuATSM
compound showed improved
lung function and cognitive ability,
compared to the predicted declines
observed in standard-of-care
patients. Treated patients showed
a much slower overall disease
progression as measured by a
global disability score.
The clinical trial was led by Professor
Dominic Rowe at Macquarie
University, and Associate Professor
Susan Mathers at Calvary Health
Care Bethlehem.
This is the first human evidence for
a disease-modifying drug for motor
neurone disease. It is a significant
step forward, and we look forward
to confirming the positive results in
a larger study soon.
The trial is currently being extended
to examine the longer-term results.
Researchers will begin a larger
Phase 2 trial to confirm CuATSM’s
effectiveness in motor neurone
disease.
10

CUSTOMER ENGAGEMENT TEAM
NDIS SUPPORT
IN AN AGE OF COVID
If you have caught the evening news or read the papers recently you may have heard of the
little COVID-19 pandemic that Perth and, for that matter, the whole world has been dealing
with for much of the past two years.
While Perth avoided much of
the impact for the last couple of
years, the recent border opening
and the sub-variant of Omicron
have brought the pandemic to
our doorstep. While I (and I am
sure you) hope that we can return
to some level of normalcy sooner
rather than later, I thought it an
opportune time to outline some of
the available support for those on
NDIS plans.
COVID-19 brought significant
disruption to the way many disability
support services were offered. For
example, many services providers
rapidly pivoted to the delivery of
care remotely via telehealth to
facilitate continuity of care. While
MSWA has maintained much of
our face-to-face services we have
increased the number of telehealth
services being undertaken and
have embraced technology to assist
with this service delivery. To assist
this change the NDIS introduced
a flexible approach to purchasing
low-cost assistive technology (AT)
from their funding. This flexible
approach allows participants to
spend up to $1,500 on AT items,
such as smart devices and fitness
equipment, in consultation with
their existing support providers.
As with anything NDIS, there is a
laundry list of requirements, but I
suggest talking to your Local Area
Coordinator, Support Coordinator
or Client Liaison Coordinator to help
access this support.
Another change has been the
increase in the use of Rapid Antigen
Tests (RATs) to quickly determine an
individual's COVID-19 status. Once
again, the NDIS has supported
these changes by allowing eligible
participants to purchase RATs
with NDIS plan funding via their
core budget. The core supports
budget is flexible and can be used
temporarily to cover the cost of
RATs. Additionally, you may be
eligible to receive free RATs from
participating pharmacies if you
hold a Commonwealth Seniors
Health Card, Health Care Card, Low
Income Health Care Card, Pensioner
Concession Card or a Department
of Veterans Affairs Card. Once again
it's best to discuss this with your
Support Coordinator or Local Area
Coordinator as to the best way to
access this funding.
While RATs provide a level of comfort,
at times you may need to complete
a Polymerase Chain Reaction (PCR)
test. While testing centres have
been set up around the state, it may
be difficult due to your condition, to
get to one of these centres and wait
in line for a test. Luckily, COVID-19
testing in the home is now available
for people with disability. This is
organised through your General
Practitioner (GP) by requesting that
a staff member from the relevant
pathology group visits your home.
While the above supports are great,
the one cause for caution is what
will be the lasting impact on NDIS
plan values. While each person’s
plan should be reviewed on their
support related needs, the NDIS
states on their COVID-19 webpage
that ‘your funding may change in
your next plan’. While this is perfectly
ambiguous, it is important that you
note any significant disruption to
your service delivery due to isolation
or COVID-19 precautions at your
next plan review meeting.
From our standpoint, MSWA is
working hard to ensure we are
prepared for the longer-term realities
of COVID-19. This includes closely
monitoring Government and Health
Department advice and regulations
to ensure that our services follow
safety guidelines and directions.
These precautions may change as
guidelines are updated, however,
will always focus on continuing as
many services as possible.
With the latest COVID-19
requirements changing almost
weekly it is important to understand
how these changes may impact
your NDIS plan. The best source of
information for the NDIS’s response
to the pandemic is available through
ndis.gov.au/coronavirus.
I hope the above information has
been useful and that you and your
family stay safe.
GEOFF HUTCHINSON
MANAGER CLIENT
ENGAGEMENT
11

OCCUPATIONAL THERAPY
OT GROUPS 2022 –
PLEASE REGISTER YOUR INTEREST
The Occupational Therapy team is looking to start running groups again. We would love to
run groups based on topics that you would find helpful in increasing your quality of life.
FATIGUE MANAGEMENT
ASSISTIVE TECHNOLOGY
COGNITION WORKSHOP
Do you often experience fatigue
and are unsure how to cope with it?
Do you find that fatigue stops you
from doing what you enjoy?
Fatigue is a common symptom in
people with neurological conditions
and other chronic health conditions.
It is a hidden symptom that can be
misunderstood by those around us
because it cannot be seen physically.
Join us for an interactive session
with an Occupational Therapist to
learn about the basics of fatigue,
what causes fatigue for you, the
importance of good planning and
rest, examining your priorities and
using your energy well.
Assistive Technology is an umbrella
term used for any device or system
that allows individuals to perform
tasks that they would otherwise be
unable to do. In the world of NDIS,
The Cognition Workshop is a four
week course that helps you to
understand what cognition looks
like in your life, and strategies for
how to improve your attention,
Assistive Technology can be funded memory and information
in different ways. Come along to processing skills. This is an
this session to uncover the world
of AT and how equipment can help
you in your independence journey.
opportunity to share experiences,
learn from others and personalise
your management strategies with
advice and strategies provided by
the group facilitators.
If any of the above groups interest you, or you have
suggestions for other topics, please contact the OT team
at ot.referrals@mswa.org.au to register your interest!
THE MSWA
CLIENT FORUM
will take place on
Tuesday, 5 July 2022
More information
to come…
12

MSWA ALBANY HAS
OPENED ITS DOORS!
Our new Services Centre.
Our new $7m Albany development is now complete, with an official opening planned to
take place in coming months.
Clients in the Great Southern have
been enjoying the new stateof-the-art
Services Centre for a
few months now, and the adjoining
High-Support Accommodation
welcomed its first residents in
early April.
Albany Outreach Coordinator,
Caroline Clarke-Smith, describes
what it was like to walk in the front
door: “It was awesome to see the
centre for the first time. We were
overwhelmed! It’s finally here! It’s
unbelievably huge!”
Reception area
This unique development was
made possible by the generosity of
MSWA’s community of supporters.
Funds raised have directly helped us
to expand our footprint in the Great
Southern, increasing our capacity to
support regional people living with
neurological conditions.
A bedroom and bathroom in one of our new High Support
Accommodation units
13

NURSING
PROTECTING YOURSELF AND
OTHERS IN THE FLU SEASON
Don’t forget your flu shot! The Health Department states that influenza (the flu) is a very
contagious infection of the airways and affects people of all ages. Although it can be a mild
disease, it can also cause very serious illness in otherwise healthy people. It can require
hospitalisation and can cause death.
Vaccination is a safe and effective Our medical advisor Professor
way to protect you from serious
disease caused by influenza.
Bill Carroll offers the following
comment for people with MS:
Early influenza vaccination is "There is no evidence that these
recommended for people aged vaccinations make MS worse
six months and over. Anyone or cause a relapse. Should a
who wants to protect themselves
against influenza can talk to their
relapse occur around the time
of flu vaccination it is thought
immunisation provider about to be coincidental. Occasionally
getting vaccinated.
people with MS can have a brief
exacerbation of existing MS
Our MSWA Clients often ask if
symptoms, due to vaccination
whether they should have the
associated fever or fatigue, but this
vaccination, especially relating to
is not worsening of the MS.
MS and some of the medications
they take.
The Government funded Health Direct
(healthdirect.gov.au/colds-and-flu-treatments)
is packed with health information and advice.
You can call a Health Direct RN 24/7
for free advice: 1800 022 222.
People with MS are advised to
discuss any concerns 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".
People with neurological or other
chronic conditions are advised to
discuss their concerns with their
treating neurologist or GP as soon
as possible; it is essential to have the
vaccination earlier rather than later
to reduce the risk of contracting the
flu during the riskier winter months.
Getting vaccinated helps protect
both you and those around you. It’s
particularly important to protect
vulnerable people in the community
who can’t be vaccinated, such
as babies who are younger than
six months and adults with
low immunity.
SUE SHAPLAND RN, BN, MSCN
14

COUNSELLING
KIDS LEARNING ABOUT MS!
In January the MSWA Children’s MS Education Workshop made a welcome return at
the Rossmoyne Community Hall during the school holidays. The workshop had a wonderful
turnout, with six children, five parents, and five MSWA staff from the Nursing and
Counselling teams.
The workshop is designed for
families with children aged 6-12
years and a parent/significant family
member living with MS. Our aim
is to communicate science in an
engaging, fun way and to give young
people a better understanding of
issues faced by their parent/family
member living with MS.
We started the day with some
fun interactive games and an
opportunity for the kids and
parents to get to know one another.
The workshop ran for three hours
and had five interactive stations.
One family took part in the activity
at each station and then rotated
until they had taken part in the
activity at each station. Topics
covered included information
about vitamin D, the impact of MS
on vision, walking, and bladder, and
treatments for MS. The workshops
were developed in the UK by
Digesting Science in 2013 by the
Barts MS Research team.
DAJANA TESEVIC
MSWA COUNSELLOR/
COORDINATOR OF HEALTH
EDUCATION AND PEER SUPPORT
What did parents say about taking part in the January workshops?
“It gave me the opportunity to open dialogue with my kids about MS at their level.”
“The event was great for my kids, they really enjoyed the excellent resources.”
“The resources were amazing, and I would 100% recommend this for other families, particularly those that
may have sheltered their kid from their diagnosis.”
“We all gained a lot of clarity around MS.”
What did children say about taking part in the workshops?
“I learned all the different ways MS affects people.” (7 years old)
“This will help me understand when my dad needs a rest.” (9 years old)
Interested in coming along to the next workshop?
Register your expression of interest with Dajana at Dajana.Tesevic@mswa.org.au or 0429 267 970.
15

PAIN & PAIN MANAGEMENT SERIES
Welcome to the fourth instalment in our series of articles on pain and pain management.
Below, Neurological Liaison Nurse Bronwyn Innes, who has a speciality background in
pain management, explores exercise and pain – with input from James Beckett, MSWA
Physiotherapy Manager, and Vanishree Chetti, MSWA Nurse Manager.
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
EXERCISE AND PAIN
Chronic pain is a complex experience which is influenced by physical, psychological, and
social factors. The best way to manage it is by addressing all the factors affecting your pain.
It is important to keep a positive attitude until you find a mix that works for you.
For many years, the treatment
choice for chronic pain included
recommendations for rest and
inactivity. However, exercise may
have specific benefits in reducing
the severity of chronic pain, as well
as more general benefits associated
with improved overall physical
and mental health, and physical
functioning.
Chronic musculoskeletal pain refers
to ongoing pain felt in the bones,
joints and tissues of the body that
persists longer than three months.
Examples include:
/ Hip and back pain caused by
alteration in gait, muscle stiffness
or weakness, or problems with
balance.
/ Back pain due to sitting for
long periods, fatigue, walking
difficulty, or inability to stand
for long.
/ Muscle or joint pain due to
posture changes, spasms, or
muscle stiffness.
/ Pain related to osteoarthritis.
DAILY STRETCHING AND EXERCISE
Lack of activity or exercise due to
pain or other symptoms can cause
a gradual loss of strength and
fitness. Deconditioning can worsen
your pain but improves with regular
exercise, which also helps ease your
pain. Less vigorous forms of exercise
include gentle stretching exercises,
tai chi, yoga, Pilates, walking,
chair exercises, aquatic exercises,
exercise bike classes or gym work.
It is important to find something
enjoyable which helps rather than
aggravates your pain.
It is also important to work together
with a physiotherapist to develop
an exercise program with the
purpose of:
/ Reversing the effects of inactivity
on your body.
/ Maximising your daily function
and independence.
/ Helping you achieve your physical
goals.
/ Helping you feel better and more
confident about yourself.
16

Exercise interventions are the
cornerstone of management for
musculoskeletal pain conditions,
with the benefits being wellestablished.
Expecting exercise to get rid of
chronic pain is generally unrealistic
and the usefulness of exercise
should not only be measured
purely in terms of pain relief.
WATER BASED EXERCISES
Water based exercise is particularly
helpful if you have arthritis or
a musculoskeletal condition.
Because your body is supported,
the resistance provided by moving
through water builds muscle
strength and endurance.
Types of water exercise include:
/ Hydrotherapy – a type of
exercise therapy offered by
physiotherapists as one-on-one
sessions for individuals or in
small groups. Exercises are more
specific for your condition, injury,
or situation.
/ Gentle water exercise classes –
some fitness or recreation centres
offer gentle water exercise
programs suitable for older adults
or people with health conditions
such as arthritis. All participants
follow the same general exercises
in a fun, group environment.
/ Swimming or even walking laps
at your local pool can also be of
benefit.
TAI CHI
There’s good evidence to support
the effectiveness of tai chi for
people with arthritis and other
musculoskeletal conditions. There
are many styles of tai chi, and most
are suitable for people with arthritis.
Tai chi benefits:
/ Can be practiced by people of all
ages and fitness levels.
/ Promotes correct body posture
and balance.
/ Is a low impact exercise.
/ Can help relieve joint pain and
stiffness.
/ Integrates the body and mind.
/ Uses gentle and circular
movements.
/ It’s relaxing and enjoyable.
PACING FOR EXERCISE
AND DAILY ACTIVITIES
The aim of pacing is to maintain an
even level of activity over the day as
compared to for example, doing as
much as possible in the morning
and then resting in the afternoon.
There are three main aspects to
pacing:
1. Take frequent, short breaks.
2. Gradually increase the amount
you do.
3. Break up tasks into smaller
segments.
The three aspects of pacing can be
applied separately but they often
overlap. They can be applied to both
exercises and daily activities such as
sitting, standing, and walking.
Pacing will help slowly increase the
time spent doing activities without
overdoing things and helps with
fewer flareups of pain.
Your allied health professional will
be able to help you set some goals
and make a plan if you are prone to
overdoing things and consequently
are unable to function for some
time afterwards.
DIET AND EXERCISE
Maintaining a healthy weight can
improve symptoms of chronic
pain, particularly for people
with osteoarthritis and other
musculoskeletal or joint pain.
Weight loss can be achieved by
modifying your diet and reducing
daily intake of saturated fats and
sugars. Daily low-impact exercise
will also help.
A dietician or your GP can help you
to develop a weight-loss plan.
OTHER TREATMENTS
Some people experience pain relief
from massage or treatments that
stimulate the nervous system.
These include acupuncture or using
a TENS (Transcutaneous Electrical
Nerve Stimulator).
Massage
Massage is a hands-on therapy that
involves rubbing and manipulating
the soft tissues of your body,
especially your muscles. Massage
can improve blood circulation, ease
muscle tension, and help you feel
more relaxed.
A massage is not only useful for
helping you deal with your physical
pain, it also helps relieve stress and
helps you get to sleep.
You can give yourself a massage or
you can see a qualified therapist.
You can even ask a family member
or good friend to give you a gentle
massage.
17

NURSING
While it’s not possible to massage all
parts of your body, you can still relieve
many of your own muscular aches
and tension. You may even find
that you do it unconsciously – when
you’re sitting at the computer and
you rub your neck, when you have
a headache and you gently rub your
temples, or when you’re applying a
heat rub to your sore knee.
TENS
Transcutaneous electrical nerve
stimulation (TENS) is a therapy that
uses low voltage electrical current
to provide pain relief. A TENS unit
consists of a battery-powered device
that delivers electrical impulses
through electrodes placed on the
surface of your skin. The electrodes
are placed at or near nerves where
the pain is located or at trigger points.
There are two theories about how
transcutaneous electrical nerve
stimulation (TENS) works. One
theory is that the electric current
stimulates nerve cells that block
the transmission of pain signals,
modifying your perception of pain.
The other theory is that nerve
stimulation raises the level of
endorphins, which are the body’s
natural pain-killing chemical.
The endorphins then block the
perception of pain.
TENS therapy has been used, or
is being studied, to relieve both
chronic (long lasting) and acute
(short-term) pain.
Some of the most common
conditions for which TENS has been
used include:
/ Osteoarthritis (disease of the
joints)
/ Fibromyalgia (aching and pain in
muscles, tendons, and joints all
over the body, especially along
the spine)
/ Tendinitis (an inflammation or
irritation of a tendon)
/ Bursitis (inflammation of the fluidfilled
sacs that cushion joints)
/ Labour pain
/ Lower back pain
/ Chronic pelvic pain
TENS helps ease pain for some
people, but not for others.
TENS is thought to be safe. But it
should not be used:
/ on an open wound
/ if your skin is irritated
/ near sensitive areas such as your
eyes
/ while driving or operating
machinery
/ in or around water
It should not be used by:
/ women who are pregnant but
not in labour
/ people with a pacemaker or a
cochlear implant
/ people with epilepsy
If you think you would like to
try TENS, you should discuss
with a physiotherapist or health
professional for advice on whether
it may be suitable for your problem.
IN CONCLUSION
In conclusion, there are many types
of exercise which can be utilised
by individuals of all abilities to help
gain strength, flexibility, and aid in
reducing the severity of chronic
pain, as well as more general
benefits associated with improved
overall physical and mental health,
and physical functioning.
And in the very wise words of a
pain mentor of mine…
‘MOTION IS LOTION’
BRONWYN INNES
MSWA NEUROLOGICAL
LIAISON NURSE
JAMES BECKETT
MSWA PHYSIOTHERAPY
MANAGER
VANISHREE CHETTI
MSWA NURSE MANAGER
FURTHER READING
/ TENS: healthdirect.gov.au/tens
/ Manage your Pain by Dr Michael Nicholas, et al. (available on Amazon)
/ Pain Australia: painaustraila.org.au
/ MS Australia: msaustralia.org.au
/ Massage and musculoskeletal conditions: msk.org.au/massage
/ Exercise and musculoskeletal conditions: msk.org.au/exercise
/ ‘Musculoskeletal pain and exercise—challenging existing paradigms and introducing new’, Benjamin E
Smith, et al, British Journal of Sports Medicine: bjsm.bmj.com/content/53/14/907
/ ‘Physical activity and exercise for chronic pain in adults: an overview of Cochrane Reviews’, Louise J Geenan,
et al, The Cochrane database of systematic reviews: ncbi.nlm.nih.gov/pmc/articles/PMC5461882/
Want to enquire about our Physiotherapy services? Send your enquiries to physio@mswa.org.au
18

MSWA CLIENT
A COOL PLACE
ROS HARMAN
I recently visited Albany. Many people associate Albany with rain, but actually the statistics
show that on average Perth has more days of rain than Albany. It was such a relief to spend
a few days in a cooler climate after Perth’s excessively hot summer.
We all know how the hot weather
can affect people with MS. Albany
is also ‘cool’ in another sense. It
has some groovy cafés, and not
too far out of town there are many
wineries worth visiting. There is also
a modern entertainment centre
that has all sorts of ‘cool’ events,
certainly worth checking out.
I drove down to Albany with my
sister in my car, so I could do
some of the driving. It was a bit of
a challenge on the way working
out which places had toilets that
were wheelchair accessible. We
discovered that The Woolshed in
Williams has a very good accessible
toilet which is higher, as wheelchair
toilets should be, and has grab rails
on both sides of the toilet making
it easy to get on and off. Mount
Barker and Kojonup also have good
accessible toilets.
One of my sisters has a holiday villa
in Albany near the beach. I stayed
with her. She has very kindly put
grab rails in her bathroom, a shower
chair, and a bed rail to make her villa
comfortable for me. The weather
was cool but pleasant while I
was there.
It was lovely to be able to pull
a quilt up to my neck at night
and enjoy the warmth. It’s
been a while since I’ve done
that in Perth.
One evening we went for a ‘walk’
(my sister and brother-in-law took
turns to push my wheelchair) along
the path near the beach. We also
went to Ocean and Paddock for fish
and chips. This cafe was voted WA’s
best fish and chip shop in 2017, 2018,
and 2019. It was very enjoyable.
Another day we went to a winery for
lunch. As my nephew’s wife works
there, she was able to recommend
good food and wine. The winery
was a bit out of Albany and had a
beautiful view overlooking some
farmland and a river. It brought back
memories of my early childhood
growing up on a farm halfway
between Albany and Mount Barker.
The food was fantastic.
It is many years since I was a
schoolgirl in Albany. On this visit
whenever I saw someone who
looked roughly my age, I wondered
if I had been at school with them.
The trouble is we have all changed
in appearance.
Many of these people had grey
hair and had put on weight, so it
was difficult to recognise them
from school days when we were
all skinny and had colourful hair.
Albany has also changed since my
school days. It is quite sophisticated
now and has lots to offer.
While I was in Albany I contacted
Kate, the manager of the new MSWA
residential facility that has recently
opened. She showed us around
the facility and I was impressed
with it. I noticed a picnic area being
erected in a park over the road and
I suggested that Kate speak to the
council about making it wheelchair
accessible. It is so important that
people living in facilities have
somewhere to enjoy the outdoors
and to take their guests.
Albany is a cool place, with a cool
climate, cool cafes and wineries,
and cool events. And soon it will
have a cool new MSWA Services
Centre and residential facility. How
cool is that!
19

MSWA CLIENT
MARGARET’S STORY
Margaret and Brett -
Cable family gathering
at Whiteman Park
“I used to donate, and I’d always buy a lottery ticket from MSWA,” recalls Margaret Cable.
“Little did I know that I would need their support one day.”
Margaret was diagnosed with MS
two years ago, at the age of 59. But
her journey with MS began over 15
years ago, when she first noticed
a weakness in her right arm when
raking the garden. Unfortunately,
over the next decade, despite
worsening mobility on her right
side, visits to the GP and a specialist
never amounted to a referral for
an MRI.
It wasn’t until Margaret booked in
to see a podiatrist for her walking
difficulties that multiple sclerosis
was first suspected. “I hadn’t even
sat down and the podiatrist said,
‘Margaret you need an MRI to
find out what your neurological
problem is’.”
The podiatrist wrote a letter to her
GP and Margaret immediately went
next door to her doctor’s surgery
to get the referral for an MRI. The
test showed lesions and – after
some COVID-19 related delays –
Margaret received an appointment
at the Perron Institute and, at last,
a diagnosis.
LIFE IN TOODYAY
Margaret was born in Africa and has
lived in England and Switzerland.
After falling in love with a handsome
truck driver from WA, Margaret
moved to the small town of Toodyay.
She and Brett have been married
for 20 years.
For many years, Margaret worked
in stores for Bucher Municipal.
“They make bin trucks,” explains
Margaret. “I was this little tiny lady
working with the huge items –
300 kg cylinders, paddles and the
large pieces of metal that make up
a truck.”
All the while, she was experiencing
undiagnosed neurological issues.
“I used to get by with a forklift.
And my colleagues were very
accommodating. They would help
me out with certain tasks, and they
never asked why I couldn’t manage
something.”
In 2013, the parent company made
the Toodyay storeman position
redundant, and Margaret was let
go. “So it never got to the stage
where I was let go because of my
MS,” she explains.
Finding a new job proved difficult.
“I was looking for work, so I’d go for
a medical and they’d turn me down.
But at the same time, the doctors
didn’t ever find anything wrong
with me. It really knocked me down.
I felt like people thought I was lazy
or just faking it. So when it was
labelled ‘MS’ it was like this huge
burden was lifted off me. Finally,
somebody understood!
“Now I had a reason that explained
why I couldn’t take the heat any
more, why I couldn’t work any more.
“When your arm and leg don’t work,
it’s hard, and when people label you
as lazy, that’s even harder.”
FINDING SUPPORT
At her assessment at the Perron
Institute, Margaret was supported
by one of the MSWA Neurological
Liaison Nurses who work in
conjunction with Perron. “That’s
how I found out about how MSWA
could help me,” she explains.
Shortly after, the NDIS sent
Margaret some paperwork. “This
was all instigated by Perron and the
MSWA Nurse.”
20

Through her NDIS funding, Margaret
receives Support Coordination,
Occupational Therapy and Speech
Pathology from MSWA. “I saw
an MSWA Counsellor when I was
first diagnosed. I don’t need help
with that side of things yet, but it’s
good to know they’re just a phone
call away.”
EMBRACING TELEHEALTH
Margaret’s MSWA Speech
Pathologist travelled to Toodyay
to do the initial assessment, but
since then Margaret has been
dialling in to fortnightly telehealth
appointments. “It makes far more
sense. Otherwise, Clare is having
to take three hours out of her day
to get to Toodyay, and I’m getting
billed for that time too.”
“We use phone, Zoom, or WhatsApp
– the choice is countless these days
isn’t it! There’s no difference than if
we were in a room together. It works
just fine. There’s no disadvantage to
it except that I can’t offer to make
Clare a coffee!”
The education Margaret has
received from her Speech
Pathologist has made a big
difference to her everyday life.
“Before I had my assessment, I didn’t
know what speech pathology was!
It’s not just about talking. It’s about
swallowing too, and it’s about how
your brain sends signals. Looking
back over the years, I was often
choking or coughing on things. I
didn’t realise that’s classic MS.
“Some techniques are so simple
– like how to position my head
when I swallow. And understanding
what foods are problematic for me.
Anything that has a solid and a
liquid – like cereal – is tricky for an
MS brain to process. The milk goes
down the wrong way.
Margaret and dog Smudge -
2 years prior to diagnosis
“It’s also been explained to me why
I stop middle-sentence: it’s because
a neural pathway has died and my
brain needs to find a way around
the roadblock.”
A DAY AT A TIME
Looking to the future, Margaret
says she trying to embrace life at a
slower pace.
“There’s a frustration when you
can’t do something. It’s irritating
to think of what I can’t do now. I
can’t take my dog for a good walk,
and I feel guilty about that. It’s sad
thinking of the things I wanted
to do. I wanted to dive with the
whale sharks. I wanted to go the
Machu Picchu.
“But it’s nice being here in Toodyay.
I have people around me who lift
me up. They still expect me to be
me, just with a few limitations.
“I’ve scaled back my hobbies over
the years. I love crafting. I make
cards, but even that’s getting hard
now. I can’t squeeze glue or push
down on a scalpel, but there are die
cut shapes you can use now, which
make it much easier.”
Margaret enjoys going to a cardmaking
class on Wednesdays, and
staying for a coffee afterwards.
Being a truck driver, Brett is away
for 12 days at a time. Margaret has
domestic support from a few local
people, but when Brett is home he
is there by her side. “When I was
diagnosed, Brett wanted to leave
work to be my full-time carer, but
then we would have no means for
paying the mortgage and bills. He is
always happy to help, even when he
has just got home from a long trip.
“I try to absorb the positive attitude
of everyone around me.”
21

ACCOMMODATION & OUTREACH
OUTREACH HAPPENINGS: WILSON
Some photo highlights from MSWA Wilson Outreach over the last quarter.
Pancakes on Shrove Tuesday
Chair dancing with Lisa
Pancakes on Shrove Tuesday
Pigeons visiting
St Patrick’s Day
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RECEIVE BULLETIN ONLINE?
If you would like to opt-out of receiving a paper copy of this publication,
please contact communications@mswa.org.au to sign up to the e-magazine.
22

PHYSIOTHERAPY
OUR NEW FALLS
PREVENTION PROGRAM
The MS Falls Prevention Program is a 6-week exercise and education program pioneered by
Sheila Lennon, Emeritus Professor of Physiotherapy from Flinders University, and adapted
for MSWA.
It has been demonstrated that
participants who engaged with
the program showed meaningful
improvements in their balance,
walking distance and number
of falls.
The distinguishing feature that
makes this program unique is the
emphasis on taking ownership of
one’s condition. Instead of merely
performing exercises, participants
engage with educational
discussions and presentations
about the nature of falls, why they
occur and how to best manage
them. They are then encouraged to
perform an honest self-assessment
of what their functional abilities are,
and to take the necessary steps and
efforts to improve.
The ultimate goal of the program
is to empower the participant
with the knowledge and mindset
to continue managing their falls
risk long after graduating from
the course.
Using our newly acquired
Physitrack® application, MSWA
Clients receive an interactive
home exercise program with video
demonstrations and illustrations of
all exercises, and a way of recording
their progress which can be
monitored by our clinicians.
Our Physiotherapy team is now
running this program across a
variety of locations.
To register your interest or to
find out more please contact
physio@mswa.org.au.
FONG WEN SHENG
MSWA PHYSIOTHERAPIST
AND COURSE FACILITATOR
“I’ve almost completed the Falls Prevention Program at MSWA Butler.
It’s helped me with balance, giving me the tools to balance on one leg,
and to think about distractions and think about my environment. I’m
enjoying the workshops, there’s a good bunch of people who go. We
were timed doing certain exercises and they’ll compare the results at
the end of the six weeks.”
NICOLETTE MURPHY
MSWA CLIENT
23

VOLUNTEERING, CAMPS & RECREATION
VOLUNTEER UPDATE
According to the Australian Bureau of Statistics (ABS) 2019 General Social Survey (GSS),
almost one-third (29%) of Australians participated in voluntary work through an organisation
or group, contributing anywhere from 21 to over 100 hours in the previous 12 months.
At MSWA, our volunteers are a
valuable asset, contributing an
average of just over 90 hours per
volunteer in 2021. About 15 volunteers
put in more than 100 hours and
four contributed over 200 hours last
year alone. We have just under a
third of our volunteers supporting
us in the Outreach Centres, with the
remaining making contributions
across various facilities and offices.
We are very grateful that most
of our volunteers serve in their
position for months, years and
some, even decades. To all of
you, we say ‘Thank you!’
There are a number of volunteer
positions available at various
locations. If any of these positions
interest you, please call me (via the
details below) to find out more.
It’s okay to try a few different roles
before finding one you want to
settle in to.
The most popular position is the
Activities Assistant. The role involves
socialising with, and supporting,
Clients with their individual interests
and activities and assisting staff
with the delivery of planned activity
programs in our Outreach Centres
or in respite or Accommodation.
At present, we are looking for
Activities Assistants at Beechboro,
City Beach, and Butler. If you
know of anyone who would like to
contribute some time performing
these roles, we’d love to speak
with them.
Contact: 6454 3184, Email:
Mala.Padmanathan@mswa.org.au
MALA PADMANATHAN
VOLUNTEER AND CAMP
COORDINATOR
VOLUNTEER OPPORTUNITIES AT MSWA
Looking for a change? Do any of these volunteer
roles interest you? Know anyone who may be
interested in trying something new?
We are currently looking for volunteers to fill the
following positions:
Kitchen Assistant (Beechboro)
Monday and/or Friday, 5 hours a week
Activity Assistant
(2 positions: Beechboro, City Beach, and Butler)
Flexible days, 2-3 hours a week
Gardener (City Beach Respite)
Flexible days, 2-4 hours a fortnight
Document Delivery (multiple positions: Wilson)
Flexible days, 6 hours a week
Administration Assistant (Vasse)}
Tuesday and Thursday, 9am-2pm
Judith Bodger (Volunteer Activities Assistant - Arts
and Craft) with Esserina Clinton (MSWA Client) at
Wilson Outreach.
Administration Assistant (Mandurah)
Flexible days: 3 hours a month
Contact Mala Padmanathan, Volunteer & Camp
Coordinator, to discuss your options.
Phone: 6454 3184 or 0487 530 240
Email: Mala.Padmanathan@mswa.org.au
24

CAMPS UPDATE
In the last Bulletin, we mentioned that our Lotterywest supported Camps program was back
on track with our first Clients and Carers camps scheduled for March and April this year.
Unfortunately, the spread of
Omicron and then the opening of
the WA borders on 3 March resulted
in a rapid escalation of COVID-19
case numbers in the community.
Due to further concerns related to
the spread of COVID-19 and with
additional measures to reduce the
risk of spread, this led to a review
of our plans and processes, and we
had to make the difficult decision
of cancelling all camps in the
first half of 2022 to minimise the
window of exposure for our MSWA
community – vulnerable Clients,
carers, and staff alike.
We are sorry that this decision had
to be made and we understand the
disappointment this would have
caused for our Clients and carers
and apologise for any inconvenience
caused. But, as always, we put the
safety of our Clients, families and
staff first.
We hope the camps planned for
the second half of 2022 will proceed
and we are very excited to get the
program back up and running.
We’re looking forward to seeing
everyone come together to enjoy
these great events.
We are monitoring the
situation and will continue
to follow the guidelines from
the State Government and
WA Health Department.
Camp activities will be
advertised through our
Outreach centres and
upcoming editions of Bulletin.
I will also make direct contact with
those who have expressed interest in
participating in a camp. If you have
any queries regarding camps, please
contact me on 6454 3184 or email
Mala.Padmanathan@mswa.org.au.
MALA PADMANATHAN
VOLUNTEER AND CAMP
COORDINATOR
25

COUNSELLING
THE POWER OF
CONNECTION
DAJANA TESEVIC
MSWA COUNSELLOR AND HEALTH EDUCATION/
PEER SUPPORT COORDINATOR
We are inherently social beings, and we are biologically, cognitively, spiritually, and physically
wired to love and be loved. Significant research evidence shows that meaningful contact
with other people and being part of a community can help significantly with our physical
and emotional wellbeing.
Why is it important and what are
the benefits?
Major lifestyle changes and personal
losses associated with illness and
the recent pandemic have had
significant effects on our sense of
belonging. During these difficult
times in our lives, we have a natural
impulse to reach out to others for
support. Allowing ourselves to be
vulnerable with people we trust,
we form much stronger and deeper
relationships. Social connection
reduces loneliness while providing
a sense of belonging.
Individuals who feel more
connected to others have lower
levels of anxiety and depression.
Connection is also linked to higher
self-esteem and self-worth and can
help boost our immune system.
So how can someone find
connection?
In today’s world, we live such busy
lives and for some of us, social
connection can fall by the wayside.
Prioritising time for social
connection, making an active
choice to spend time with people
who make you feel supported
and loved. Our need for human
connection does not mean that
we all need to be social butterflies.
Having connection can look
different for everyone, what matters
is that it has meaning for you.
Connecting through technology
can be beneficial by allowing us
to stay in touch with family and
friends more easily. However,
technology should be enhancing
our connection to others, not
replacing it. Human contact and
interaction are much more valuable
and cannot be replaced.
Volunteering, being part of
something bigger than yourself.
We get a much greater sense of
connection when we are helping
others in the community, it also
gives us meaning and purpose.
Animals are a great bridge to
forming connection, meet up with
others who walk their dog in your
neighbourhood.
Peer groups are a great way to find
connection with individuals who
can relate to what you are going
through. Accessing counselling
can further help with building on
existing relationship skills, it can
help improve your communication
and emotional connectedness.
When we talk about connecting,
we usually think of connecting with
other people. However, there are
other ways of being in touch and
connected that are also important;
connecting with self and having
quiet moments, connecting with
nature, animals or with God or one’s
spiritual needs.
Regardless of how you choose
to connect, it is important to
remember that you are not alone.
This is a rare time in history that
people all around the world
from different cultures, languages
and social economic groups
are experiencing the same
thing together.
26

NURSING
COVID-19
VACCINATION,
BOOSTERS
AND YOU
SUE SHAPLAND RN, BN, MSCN
This information is general in nature. You should always seek advice from your GP and/or
neurologist, who know you well and can answer any specific questions or concerns about
COVID-19 vaccinations and boosters, as well as any specific treatments you are receiving and
any timing recommendations.
Primary course of vaccination and
boosters: What does that mean?
As mentioned in the last Bulletin,
for some people – those who
are immunocompromised –
the primary course of COVID-19
vaccinations should be three doses.
In addition, a booster has also been
recommended.
Now, the Government and Health
Department have recommended
a second booster for vulnerable
groups as we come into the
winter months. This provides
more adequate protection against
COVID-19, and especially the
Omicron variant.
You should book an appointment to WA: COVID-19 vaccination, including
have another booster dose as soon the booster, is now mandatory in
as possible before or during winter WA for most sectors and workplaces
if it has been four months since your but especially the health, aged care
first booster dose and you fit into and disability sectors. Restrictions
one of the below categories:
are also in place now for those who
are unvaccinated unless they have a
/ 65 years or older
legitimate exemption.
/ a resident of an aged care or
disability care facility
/ severely immunocompromised
/ Aboriginal or Torres Strait Islander
and aged 50 years and older.
For information and updates, go to the Health Department
websites in WA, and the Federal site, as these are updated daily
and provide vaccination advice and information and links for how
to book your vaccination:
healthywa.wa.gov.au
health.gov.au
or call the COVID helpline on 1800 020 080 –
open 24 hours, 7 days a week.
Health Direct have a handy COVID-19 restriction checker
healthdirect.gov.au/covid19-restriction-checker -
just select your state and the type of setting.
27

COUNSELLING
THE VALUE OF ACCEPTANCE
IN CHALLENGING TIMES
Ideas around the value and usefulness of acceptance are very old and emerged from a variety
of cultures in the ancient past, but are equally applicable today.
Many people confuse acceptance
with giving up or being passive.
This is understandable. However,
acceptance may not be seen in
this way at all. Rather it can be
seen as an active, intentional and
courageous way to move on, despite
the challenges in our lives.
Acceptance does not mean that we
like, agree, concede, forget, fail to
see or ignore something. Instead,
it means that we understand
the difference between what we
control and what we do not. Then,
instead of focusing on what cannot
be changed, we instead focus on
what can. This invites attention
away from others and external
events, and back to ourselves – it
shifts us away from being helpless
or victimised into having choice
and agency, even though this may
be limited. Acceptance is an act
of resistance.
Another way to see this is to
understand how suffering can be
created or increased by resisting
the present reality. When suffering
is already present in this reality,
then this is multiplied when we
resist and cannot accept. Trying
to change what we cannot control
often brings only more pain. Not
being able to let go can chain us
to the past and hold us back from
the present which is the only place
where we can make a difference.
For example, we are seeing pain
and struggles in so many places
around us these days – in personal
challenges, COVID-19, and events
abroad. If we focus and attach to
these issues, we may feel angry,
depressed, and anxious, in our own
lives and relationships. Then the
other problems remain, but now
there is a problem in our lives and
for others that may care about us.
However, if we can find acceptance,
bring our focus back to ourselves,
those we love, and OUR living, then
we can be become more resilient,
take better care of ourselves and
others, remain engaged, and bring
what good we can. In this way we
make a difference, bring positivity,
follow our values, and resist the
suffering in this world.
Research has also shown
that acceptance is a crucial
part of mental health, while
its counterparts, avoidance
and attachment (trying to
avoid negative thoughts and
feelings, focusing on them, or
grasping after only the ‘good’
stuff) is implicated in almost
all mental health issues.
IAN SAMPSON
MSWA COUNSELLOR
28

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.
29

STAFF LENGTH OF
SERVICE AWARDS
On 15 March 2022, Melanie Kiely (MSWA
CEO) and Ros Harman (MSWA President)
presented staff members with Length of
Service awards to recognise their 10, 15 or 25
years with MSWA.
Congratulations to these team members
and thank you for your years of Service.
Linda Kidd,
Manager Supported Accommodation & Respite
Treendale Gardens (15 Years)
30

Jacqueline Dinsey,
Care Support Worker
(25 Years)
Denise Vogels,
Community Team Leader
North (10 Years)
Susan Rowe,
Recreation & Domestic Support Worker
Treendale (10 Years)
Simone Foxley,
Roster Coordinator
(10 Years)
Susan Barker,
Community Support Worker
Treendale (25 Years)
Nimisha Baird,
Senior Neurological Nurse
(10 Years)
31

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