MSWA Bulletin Magazine Spring 2021

THE OFFICIAL MAGAZINE OF MSWA
Spring 2021
mswa.org.au
INSIDE
/ What is assistive technology
and how can it help you?
/ Good health monitoring practices
/ Pain and pain management
series: Part 2
Blooming Disordered Exchange by MSWA Client
Rachael Lemon (more on page 25).
/ Farewell Marcus Stafford

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
Manager, Alimul Tasin 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
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 Michelle John 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
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 spring 2021 edition of Bulletin. We hope you enjoy the news, stories and
service information we have brought to you this quarter.
CONTENTS
GENERAL MANAGER STRATEGIC
SUPPORTS AND RESIDENTIAL
OPTIONS ........................... 4
GENERAL MANAGER
MEMBER & CLIENT SERVICES ....... 5
MSWA CLIENT FORUM 2021 ......... 6
SPOTLIGHT ON: ASSOCIATE
PROFESSOR LUCINDA BLACK. ...... 7
RESEARCH ROUND UP. ........... 8-11
STILL INDEPENDENT
AS NDIA SCRAPS
CONTROVERSIAL PLAN. ............12
VALE DR GREG BROTHERSON. ......13
COVID-19 VACCINATION UPDATE. .. 14
ARE YOU PRACTICING
GOOD HEALTH MONITORING? . .....15
CHRONIC PAIN
MANAGEMENT STRATEGIES. ........16
CONNECTING WITH NATURE . .......17
LOOKING TO NASA FOR
ASSESSING BALANCE PROBLEMS. . 18
TEEING UP FOR A NEW LIFE
IN ALBANY .........................19
WHAT IS ASSISTIVE
TECHNOLOGY AND
HOW CAN IT HELP YOU?. ....... 20-21
FAREWELL MARCUS!. ........... 22-23
COMMUNITY FUNDRAISERS
IN FOCUS ...................... 24-25
BLOOMING DISORDERED
EXCHANGE . ....................... 25
VOLUNTEERS AND CAMPS
UPDATE. .......................... 26
Q&A WITH BOB MASEK,
CHAIR PING INVENTOR . ........... 27
AN AB COLLARD ORIGINAL FOR
MARGARET DOODY HOUSE. ....... 28
EXPRESSIONS OF INTEREST:
OT GROUPS. ....................... 28
INCLUSION FOR ALL. .............. 29
OUTREACH HAPPENINGS:
ROCKINGHAM. .................... 30
A NEW ROWING MACHINE FOR
MSWA WILSON. ................... 30
OUTREACH CHRISTMAS
CLOSURE DATES ...................31
3

STRATEGIC SUPPORTS
AND RESIDENTIAL
OPTIONS
SUE SHAPLAND RN, BN, MSCN
GENERAL MANAGER
STRATEGIC SUPPORTS AND
RESIDENTIAL OPTIONS
“Only look back to see how
far you have come.”
Winnie the Pooh.
Now, who knew Winnie the Pooh
was so wise? How true is this
great saying, and it applies in so
many ways!
There have – and will be – many
times we reflect and remember
where we have come from, but
often we don’t do it enough. We are
so busy looking forward and just
doing the job, that we don’t stop to
see what we have achieved and feel
a bit proud. But we should.
Take MSWA – we are 50 next year
– that’s a long way to look back,
but the journey is worth thinking
about. Back in 1972, when MS was
hard to diagnose and there were no
treatments, a small number of WA
folks established a support group.
And look where we are now!
There are over 12 treatments,
diagnosis is much easier
and MSWA now proudly
supports people living with all
neurological conditions.
MSWA has grown significantly over
the last 19 years in particular and
experienced great success in so
many ways, and that can be directly
linked back to when Marcus Stafford
joined the organisation as CEO. As
you know Marcus said farewell to us
in October; we all wish him well and
he will be greatly missed!
Under Marcus’ expertise and
stewardship, with the support of
the MSWA Board, management,
and staff, we have achieved great
success and risen to heights many
can only dream of. At the core of
this success has been the desire to
advocate for, and support our Clients
to have, a better quality of life and
better outcomes. Pre-NDIS, MSWA
allocated funds (raised through our
events, raffles and of course the
Mega Home Lottery) to supplement
government funding. This allowed
us to build new accommodation
and services centres and of course
to grow our commitment to
neurological research. Looking back
really shows us how far we have
come and what has been achieved.
Then it’s head down and follow the
course as there’s so much more to
be done!
On a personal note, I joined MSWA
in 2003, having been recruited
by Marcus. The long list of
achievements are certainly not lost
on me. I would like to thank Marcus
for being at the helm of what is now
a super yacht and wish him all the
best with his next chapter!
We are really getting excited now
as construction of the Albany
development ploughs ahead
and we plan to open in March
next year. Both the supported
accommodation units and the
Services Centre will be amazing; I
can’t wait to see the end product
once it’s all fitted out.
As most people have heard we have
proudly committed $10 million for
neurological research this year – that
is amazing in anyone’s language. We
are proudly supporting a number of
WA-based projects and we will keep
you updated on their progress and
any opportunities for participation.
The recent Client Forum showcased
some of the talent and we did film
the session and the links will be
shared for those interested.
Spring has sprung, although winter
was threatening to return at one
stage, and Christmas is looming. I
hope we all get some family time
over the break and that COVID
doesn’t spoil our fun. I think the last
eighteen months have reaffirmed
how great it is to live in WA!
Take care, we look forward to a new
year with hopefully more freedom
to move around for those itching to
travel. Please stay safe.
4

MEMBER &
CLIENT SERVICES
NICOLA WASHINGTON
GENERAL MANAGER
MEMBER & CLIENT SERVICES
Welcome to the spring
edition of our Member
& Client Services
Bulletin… and Christmas
is almost here!
The year is flying by, and we have
been keeping busy with many
exciting projects that are in the
process of being implemented to
deliver improved services to you,
our Clients.
Our Albany Services Centre
and High-Support Accommodation
facility is progressing well. I visited
the site with Andrea Taylor at the
end of September and it really
is looking incredible. The space
is fantastic and is going to be
very special for our Clients to
utilise services.
It will also be a great place to
work. We are already looking for
expressions of interest from the
local community across a number
of roles. It’s a very exciting time
and we are all looking forward
to servicing the Great Southern
region from this wonderful Centre
and providing the much needed
high-support accommodation with
the 10 new units that are being built.
We are also busy with the
implementation of new IT systems
across several of our business areas.
We are upgrading and replacing
our current systems to improve
efficiency and service delivery. Our
aim is to streamline our processes
and improve our communication
for both our staff and Clients to
provide an improved experience
for everyone. Implementations of
these upgrades will continue well
into 2022.
Our Client Forum was held on
15 September and was a great
success. We were very lucky to
have presenters from ECU, Curtin
University and the Perron Institute
who provided great insight into
the latest research and technology.
MSWA is very proud to contribute
its largest donation to research
with a record $10 million donated
this year. This funding will continue
to help and assist our partners
with innovative research across
neurological conditions. I would
like to thank the staff involved in
making this event enjoyable and
successful. As always, we welcome
your feedback and would love
to hear from you about this
event. Please email us at
feedback@mswa.org.au
I would like to take this opportunity
to wish a fond farewell to our CEO
Marcus Stafford. Marcus has been
an inspirational leader and has
driven MSWA to be the successful
organisation it is today, supporting
people living with neuro conditions
and helping to improve their lives.
Thank you, Marcus, for your fantastic
leadership and friendship – you will
be missed. Enjoy the next chapter
of your life and I hope you get a
chance to improve your golf swing.
Finally... Christmas. Yes, we are
nearly there. The good news is
that we will be holding our Client
and Volunteer Christmas Party on
Thursday, 2 December 2021. We
missed our party last year, so we are
looking forward to catching up with
everyone and celebrating. Look out
for more information on page 31.
5

RESEARCH
MSWA CLIENT FORUM 2021
Thank you to all those who came along to another informative MSWA Client Forum on 15
September. Special thanks also to our guest speakers who offered us an exclusive window into
their respective fields of research and/or professional expertise:
/ Professor Allan Kermode, The Perron Institute
(pictured)
/ Professor John Mamo, Curtin University
/ Dr Onno van der Groen, Edith Cowan University
/ MSWA Respiratory Physiotherapy team
/ Vanishree Chetti, MSWA Manager Nursing
/ Geoff Hutchinson,
MSWA Manager Customer Engagement
6

SPOTLIGHT ON: ASSOCIATE
PROFESSOR LUCINDA BLACK
Lucinda Black is a nutrition researcher at Curtin University.
MSWA has been investing in her vital neurological research
since 2016.
“The people with MS I’ve
met are so enthusiastic
about making positive
changes in their lives. And,
as a researcher, that’s really
inspiring for me as well.”
LUCINDA'S RESEARCH JOURNEY
“I started working in research about
15 years ago,” explains Associate
Professor Lucinda Black. “I was
focusing on vitamin D and it led me
to the study of multiple sclerosis,
because there is a link between
low vitamin D status and higher
risk of MS. At the time, there was a
big gap in knowledge around MS
and diet in general. I realised there
was an opportunity to develop
stronger evidence.”
Lucinda is currently leading a
research program in diet and MS,
here in WA. She explains that the
program has two areas of focus:
“One is to help strengthen the
evidence we have around diet and
MS so that we can better understand
what diets, foods or nutrients might
be beneficial for people. The second
is sharing the information in a clear
and accessible way.
“There’s a lot of confusing
information presented online and
it’s very hard to navigate for anyone,
but especially for people who might
be under stress because they’ve
had a serious diagnosis. So we’re
designing an online diet education
program. It’s tailored to people with
MS, which is key.”
Lucinda reveals that the education
program is being co-designed
by people with MS to ensure it
reflects their needs, engages
them, and ultimately educates
them on ways to improve their
day-to-day lives whilst living with a
neurological condition.
“What’s really exciting is that people
with MS in WA have been so keen
to be involved in research. They are
volunteering their time, they have
experience, they have knowledge
and ideas. Without that input, we
wouldn’t be producing such highquality
research.”
MSWA’S INVESTMENT
MSWA began funding Lucinda
Black’s research in 2016.
“It was around that time that I’d
identified that there was a lot of
misinformation about diet in relation
to MS, so I proposed a project that
would help strengthen the evidence
around it,” says Lucinda.
“It was MSWA that funded that first
project and, since then, through
help from MSWA, I’ve developed a
research team that now includes
staff, students and many national
and international collaborators, so
we’re able to conduct impactful
research, right here in WA.”
KEEPING IT LOCAL
Lucinda explains that there’s a
really positive feeling amongst
herself and other WA-based
neurological researchers because of
MSWA’s support.
“Because of the high level of
funding, we’re able to start research
here. We may take it nationally –
there might be multi-centre trials
– but the research will always start
in WA and that’s a real benefit for
people living with neurological
conditions here.”
Lucinda says the Western
Australians who take part in her
research are a major part of what
drives her. “What I’ve found is that
people with MS are so interested
and engaged. They are passionate
about making changes in their own
lives to help manage their disease. I
find it really inspiring to be around
people who are so proactive. It
gives me hope for a positive future
for people with MS and other
neurological conditions.”
Lucinda says she was thrilled about
MSWA’s recent record-breaking
funding announcement.
“MSWA has funded my research for
the past six years and they’ve just
announced a huge contribution of
$10m to neurological research this
year. I’m absolutely delighted to be
part of this funding. It couldn’t be
a better time to be a researcher for
neurological conditions in WA.”
Lucinda will use this year’s funding
to continue to grow a strong team
here in WA who are working to
answer the many unanswered
questions people have about
the role of diet in the onset and
progression of MS.
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
MS symptoms often apparent
years before diagnosis; Marisa
Wexler MS; June 24, 2021.
A new study suggests that many
people with multiple sclerosis (MS)
experience symptoms several years
before diagnosis.
It has long been known people with
MS tend to seek medical attention
more frequently in the years before
diagnosis than those without the
disease. There has been debate as to
whether this is a result of MS itself,
or a prodromal phase of the disease.
A team of researchers in Munich
analysed data in an effort to address
this question. Their findings were
published in the journal Neurology,
in the study, ‘Systematic Assessment
of Medical Diagnoses Preceding the
First Diagnosis of Multiple Sclerosis’.
They reviewed medical data for
10,262 people with MS in the five years
prior to diagnosis, and compared it
with other groups including Crohn’s
disease and psoriasis which are also
autoimmune.
Relative to the other groups, MS
patients had significantly higher
frequencies of certain medical
issues. Notably, most of the issues
that were more frequent among
MS patients “represent symptoms
suggestive of demyelinating events
or other neurologic diagnoses,” the
researchers wrote.
The patients appear to have been
experiencing MS-like symptoms
years before their diagnosis. Based
on this, the researchers think
patients are not experiencing a
distinct prodromal disease phase,
but instead are dealing with
symptoms of unrecognised MS.
These findings may have important
implications for MS diagnosis and
treatment, the team said.
“The sooner MS is recognised, the
better we can treat the disease. We
now need to take a closer look at
which early symptoms of MS might
be overlooked. This could allow
us to recognise the disease at an
earlier stage and thus enable earlier
treatment initiation,” said Christiane
Gasperi, physician, researcher and
co-author of the study.
Deep brain stimulation may help
with MS-associated tremors; Marta
Figueiredo PhD; October 5, 2021
A review study has found that deep
brain stimulation (DBS) effectively
reduces tremors in people with
MS but may lead to worsening
symptoms and speech problems.
While these findings support
the use of DBS for treating this
common, disabling symptom,
larger studies using standardised
measures of tremors would help
to assess the risk-benefit profile
of DBS accurately in this patient
population.
The study, ‘Deep brain stimulation
for multiple sclerosis tremor: A
systematic review and metaanalysis’
was published in the
journal Multiple Sclerosis and
Related Disorders.
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
Tremors are one of the most
common symptoms of MS,
affecting 25% to 58% of patients,
being severe in 3%–15% of cases.
The arms, legs, head, trunk, and
vocal cords are the most commonly
affected. For many people with MS,
tremors can be debilitating enough
to severely impair quality of life and
are challenging to treat.
DBS is approved, and successful, for
Parkinson’s disease and essential
tremor, and has also been used
for the treatment of severe MSassociated
tremors when other
treatments have failed. Electrodes
are surgically implanted in the brain
to stimulate the thalamus — an
area involved in motor function —
with electric impulses. The amount
of stimulation is controlled by a
pacemaker-like device placed
under the skin, near the collarbone.
A team of researchers in Iran
systematically reviewed studies
published up to March 2021 that
investigated the effects of DBS on
MS-related tremors. From a total of
1,663 studies, 17 — covering 162 MS
patients — were included in the
meta-analysis.
Results showed that the pooled rate
of tremor reduction was 73% (range
of 22%–100%) and that DBS led to
a significant reduction in tremor
scores, by a mean of -2.9 points.
One study reported improvements
in quality of life among patients
showing tremor reductions
following DBS.
“The result of this systematic review
and meta-analysis demonstrates
that MS-related tremor improves
after DBS,” the researchers wrote.
But given the high variability
between studies in terms of
follow-up duration and tremor
assessment, as well as the low
number of included patients,
larger studies using standardised
measures are needed to better
assess the intervention’s benefits in
this patient population, they added.
FROM BMC NEUROLOGY
Read more at: biomedcentral.com
Longitudinal observational study
of boxing therapy in Parkinson’s
disease, including adverse impacts
of the COVID-19 lockdown; Craig
Horbinski, et al.
Parkinson’s Disease (PD) is a highly
prevalent neurodegenerative
disease whose incidence
is increasing with an aging
population. One of the most serious
manifestations is gait instability,
leading to falls and subsequent
complications that can be
debilitating, even fatal.
Boxing therapy (BT) uses gait
and balance exercises to improve
ambulation in people with PD,
though its efficacy has not yet been
fully proven.
In the current longitudinal
observational study, 98 participants
with idiopathic PD underwent
twice-weekly BT sessions. Primary
outcome was self-reported falls per
month; secondary outcomes were
quantitative and semi-quantitative
gait and balance performance
evaluations.
Twice per week, each participant
worked with their trainer on specific
boxing-related exercises aimed
at improving overall coordination,
gait, and balance. The program
consists of hundreds of exercises/
skill sets, broken down into three
main phases. At the beginning of
each month, including before the
very first session, each participant
was asked to estimate how many
falls they had experienced the prior
month.
The average number of self-reported
falls per month per participant
decreased by 87%, during BT.
During the lockdown imposed by
COVID-19, this increased per month.
Females and those > 65 years old
reported the greatest increase in
falls during the lockdown period.
Post-lockdown resumption of BT
resulted in another decline in falls.
Quantitative performance metrics,
including standing from a seated
position and standing on one leg,
largely mirrored the pattern of falls
pre-and post-lockdown; concluding
that BT may be an effective option
for many PD patients.
9

RESEARCH
FROM NEUROSCIENCE RESEARCH
AUSTRALIA (NEURA)
Read more at: neura.edu.au
The physiology of improved
functional movement with Wii
therapy; Dr Penelope McNulty
Successful rehabilitation after stroke
is limited by many factors including
trained personnel, equipment, time,
and money.
“One of the biggest impediments in
rehabilitation is patient compliance
and motivation. We have developed
a novel rehabilitation strategy using
the Nintendo Wii; it’s fun, cheap, and
can be used in patients’ homes.”
This intense but flexible program
can be adapted to the individual
patient’s needs and can be used
for patients with good upper limb
function and those with poor
function.
“Now that we know Wii therapy
works, we need to understand how
and why it works. This will allow
us to further refine and develop
Wii therapy so that more patients
can benefit from post-stroke
rehabilitation.”
FROM STROKE ASSOCIATION UK
Read more at stroke.org.uk
Can automated stroke diagnosis
help reduce its effects? University
of Edinburgh, Dr Grant Mair.
Stroke strikes every five minutes in
the UK and it’s crucial that stroke
patients are treated quickly and
effectively to reduce the likelihood
of death and severe disability.
In very busy hospitals, there may
be delays and scans can be hard
to interpret even for the most
experienced professionals. Artificial
intelligence (AI) computer software
can assist humans to interpret brain
scans and they are increasingly
available for use in healthcare.
More research that is also
independent of the companies
producing the software is needed
to ensure that they do increase the
accuracy and speed of diagnosis,
they are safe and good value for
money.
The researchers tested an AI
software, called e-ASPECTS,
developed by Brainomix Ltd Oxford
UK to understand if it should be
used for diagnosis of stroke in
hospitals.
The team looked at how well
the software can identify and
quantify damage to the brain
caused by stroke compared to a
human expert, as well as how well
it identifies underlying causes of
stroke symptoms eg, stroke caused
by blood clot vs a bleed in the brain.
They also looked at if certain clinical
(eg, patient age, stroke severity)
or imaging characteristics (eg,
stroke type, position of patient
in the scanner) have an effect on
differences between the software
and human diagnoses.
The team will determine if using the
software can save time in diagnosis
of stroke compared to various
types of clinicians involved in
stroke care and using the software
increases confidence of clinicians
and influences their decisions in
diagnosing stroke.
The researchers collated over 4000
patient brain scans from nine
studies, making this the biggest
ever analysis of this software. The
final results for software accuracy
will be published soon. Testing with
professionals is ongoing.
This research sets a precedent for
independent testing of AI software
in stroke, which can improve stroke
care by ensuring the best software
is used. The results of this research
and similar studies will help NHS
trusts and other organisations
make informed decisions when
purchasing AI software.
FROM HUNTINGTON’S VICTORIA
Read more at:
huntingtonsvic.org.au/research
Targeting the Huntington’s Disease
Gut Microbiome; Yifat Glikmann-
Johnston.
Research Duration:
January 2021 – December 2022
Recruitment Dates:
April 2021 – September 22
Many people with Huntington’s
disease (HD) lose weight
unintentionally and experience
gastrointestinal disturbances,
which affect their quality of life.
As people with HD struggle with
symptoms that lack adequate
treatments, there is a critical
need to understand how nonpharmacological
interventions such
as lifestyle factors (eg, diet, exercise,
sleep) can be used to enhance
quality of life until appropriate
pharmacological treatments are
found.
10

This research project is investigating
the bacteria within the gut and the
relationship between gut health
and clinical indicators of HD such
as mood, weight, and thinking and
memory.
“Our study is completely remote,
meaning that participants can
do the study from home. We use
online questionnaires, cognitive
tasks via mobile app and telehealth,
and ask for a faecal sample to be
sent by post.
Results of this research will provide
the knowledge we need about
the HD gut to make lifestyle
recommendations and inform
other interventions that can help
with gastrointestinal symptoms (eg,
change in diet, taking supplements
such as probiotics).”
This research project is funded by
the Huntington’s Disease Society of
America HD Human Biology Project
Fellowship awarded to Dr Yifat
Glikmann-Johnston.
FROM MND AUSTRALIA
Read more at: mndaustralia.org.au
Phase 2/3 of the Copper-ATSM
clinical trial will soon commence
at Macquarie University, Sydney
and then at other sites across
Australia.
The first clinical trial of copper-ATSM
as a potential treatment option
for motor neurone disease (MND)
started recruiting in November
2016.
Copper-ATSM therapy was developed
in Australia. Research has shown
copper-ATSM can protect motor
neurones in the spinal cord, improve
MND-like symptoms, and extend
the lifespan of mice with a mutated
form of SOD1. It is more effective in
mutant SOD1 mice than riluzole (the
only approved treatment for MND).
Phase 1 of the study, conducted at
two sites in Australia, identified a
safe dosage of copper-ATSM.
The phase 2/3 trial will commence
initially at Macquarie University
in Sydney and then at other sites
across Australia. Anyone interested
in taking part in the trial will need to
contact their neurologist to discuss
suitability and eligibility.
Phase 1 of the study recruited
participants who have been
diagnosed with sporadic or familial
amyotrophic lateral sclerosis.
Research to date has been
conducted on familial MND animal
models. There is no animal model
for sporadic MND. However, in 2015
Peter Crouch and colleagues at The
University of Melbourne and the
Florey Institute found MND-affected
tissues obtained from people who
died because of sporadic MND had
important similarities to mice that
responded to copper-ATSM. This
suggests that copper-ATSM may
have activity in both sporadic and
familial MND.
A possible treatment resulting from
these studies is many years away.
Phase 1 determined a safe dose of
copper-ATSM. Data from this trial
guided researchers in setting up
the next phase of the trial.
The Phase 2 Cu-ATSM clinical trial
will involve 80 participants and
evaluate efficacy (whether the
compound works as intended) and
further evaluate safety. Patients
involved in this phase of the trial will
be randomly assigned Cu-ATSM or a
placebo for 6x28 day cycles.
Motor Neurone Disease Research
Australia has invested more than
$1.2 million to support three
projects that aim to assist
developing copper-ATSM as a
potential therapeutic for MND.
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11

COMMUNTY CUSTOMER ENGAGEMENT SUPPORT TEAM
STILL INDEPENDENT
AS NDIA SCRAPS
CONTROVERSIAL PLAN
GEOFF HUTCHINSON
MANAGER CLIENT
ENGAGEMENT
In September 2020, when the then-Minister for the NDIS Stuart Robert announced that the
government had accepted many of the Tune Review recommendations, most across the
disability sector were pleased. After all, the Tune Review (an independent review of the NDIS
Act) had made a bunch of sensible recommendations that would help build a Scheme that
would work for everyone.
However, buried deep in the
announcement, was news that
would dominate the conversations
across the sector for months to
come: that the NDIA planned
to introduce Independent
Assessments to all participants. The
Minister announced Independent
Assessments would be introduced
for everyone applying for the NDIS
from February 2021 and then
gradually include every single
participant when they have a plan
review. We were assured that this
wasn’t a cost-cutting measure and
they would be ‘independent’.
The true independence became
clear in February when the NDIA
chose the successful contractors
to complete these Independent
Assessments, just three days after
submissions closed. Concern for the
meaning of ‘independence’ became
greater when the NDIA awarded a
contract to an organisation headed
up by former NDIA CEO Rob De
Luca and several of his executive
team, who left the NDIA just months
before the announcement of the
Independent Assessment concept.
So, what was the response
from the community?
In short, massive.
Participants, providers, the media,
state governments and the wider
community all spoke out in
opposition to this plan. The pushback
on this idea and importantly
the way it was introduced was loud,
impassioned, and effective. Catherine
McAlpine, the CEO of Inclusion
Australia, summed it up when she
stated that “the immediate outcry
occurred because the government
broke its fundamental promise to
people with disability, to engage
as equal partners in decisions.
And, at the same time, decided to
fundamentally change the personcentred
nature of the NDIS.” The NDIS
Joint Standing Committee received
more than 320 submissions on the
issue from a range of individual
advocacy organisations, academics
with the vast majority highly critical
of the proposed assessments.
The people had spoken and
eventually, the government listened.
In early July and in the face of
sustained opposition, the Federal
Government agreed not to make any
legislative changes to the NDIS and
very nicely committed to consulting
on any future amendments.
The Independent Assessments
were off the table. Victory for the
People... for now.
Because while Independent
Assessments are ‘dead’, we know
that this is not the end. Both the
previous and current NDIS Ministers
have continued the narrative
around cost blowouts and the need
to change the NDIS legislation.
The government would have you
believe there are too many people
on the NDIS, plans are over-funded,
and the Scheme is financially
unsustainable. And while there may
be some truth to that, this claim has
not been backed up with sufficient
evidence to sway public opinion.
So, rejoice one and all because
we, the people, have stopped
independent assessors before
they impact thousands. But while
we savour victory, we should
remain vigilant because the
Department of Social Services
website recently announced that,
“Public consultations on draft
amendments to legislation are
expected to occur from late August
ahead of introduction to Parliament
in October 2021.” The changes are
back and it’s up to everyone to use
our voices and ensure the NDIS
continues to work for all of us.
12

VALE DR GREG BROTHERSON
It is with great sadness we say our final goodbye to former
longstanding Board Director and Bulletin Editor Greg
Brotherson. After more than a year of struggling with various
health issues, he passed away on 7 August 2021.
Greg joined what was then the MS
Society in 1979 after being diagnosed
with MS. From the start he showed
a willingness to put his skills and
abilities to use helping others with
MS. Shortly after, Greg became the
Editor of the magazine, MS Bulletin,
which over time evolved from
a typed newsletter into a highly
valued, quality, quarterly colour
magazine. He remained Editor of
Bulletin until 2019, only handing the
role on when his health deteriorated
and compromised him. As Editor, he
was passionate and committed to
providing people living with MS the
latest information about multiple
sclerosis in a very accessible and
understandable way. He also used
Bulletin to help Members connect
with others, whether with MSWA
staff who could help them live their
best lives, or with other people living
with the condition who could share
stories and experiences.
Greg started his working life in
the mailroom at Dalgety’s. He and
Myrna, his devoted wife, married
in 1961. He spent some time as a
truck salesman for a while, then
he undertook a flying course,
graduated as a pilot, and went on to
work for various airline businesses
for a number of years. As a result, he
was often known as ‘Biggles’.
Greg was elected to the Board of
MSWA in 1982 and continued to
be re-elected for many years at the
end of each of his terms of service.
He was so well known to Members
that they never thought twice when
election time came around.
Greg decided to undertake various
studies at Murdoch University,
and was granted his Doctor of
Philosophy (PhD) in 2000. He then
became a tutor in history.
I met Greg on my very first visit to
the Wilson Services Centre after
being diagnosed with MS. His
gentleness, wit and intelligence
were a great comfort to me at what
was a difficult time. He heard that I
was a high school English teacher
and encouraged me to begin
writing articles for Bulletin.
His encouragement gave me a new
interest when other areas of my life
were closing down.
Greg has always been an inspiration
to so many others, as he lived his life
with gentleness and fortitude in the
face of the continuing progression
of his MS.
Dr Greg Brotherson served MSWA
with loyalty, commitment, and great
honour for over forty years. He will
be fondly remembered as a hero of
our organisation.
I would particularly like to mention his
wife Myrna’s constant support for him
over the years. We all wish you well
Myrna as you go through this tough
time. I would also like to express my
deepest condolences to Greg and
Myrna’s sons, Kim and Jason.
Vale Dr Brotherson.
We will miss you.
ROS HARMAN
13

NURSING
COVID-19 VACCINATION UPDATE
As we all know, COVID-19 has significantly impacted all of us in one way or another. Thankfully
WA has been less impacted than other states in Australia and indeed so many countries around
the world. Closed borders and lockdowns have been particularly effective for WA and Australia
more broadly but have come at significant cost to the economy and our ability to travel.
The global push to get vaccinated
is ongoing and has indeed ramped
up significantly in the past 3 – 6
months in Australia.
Overwhelmingly there is evidence
COVID vaccinations are safe,
and indeed recommended, for
most people with chronic health
conditions; there are some medical
exemptions that apply for those
taking some specific medications.
As always there is a lot of scary
misinformation and untruths, so
please seek out credible evidencebased
information and advice.
Two injections are required and,
depending on the type of vaccine,
the spacing varies from 4 – 12 weeks
apart.
/ Vaccinations are available through
GPs, pharmacies, and state-run
centres/hubs throughout the
metropolitan and regional areas
/ All Western Australians aged 12
years and over are eligible for
COVID-19 vaccination.
/ All COVID-19 vaccines are free.
/ The Australian Technical Advisory
Group for Immunisations has
recently released new advice
regarding COVID-19 vaccination
booster shots for those deemed
‘severely immunocompromised’
and on specific medications. Ask
your medical team if a third dose
is recommended for you.
Increasingly, vaccination is
becoming mandatory in certain
settings, including residential aged
care, the health system, and various
private businesses like Qantas. Proof
of vaccination will also become
necessary for travel and some local
events in an effort to protect us all
from COVID-19.
Always seek advice from your
GP and / or neurologist, who know
you well.
Go to the Health Department
websites in WA and the Federal site,
as these are updated almost daily
and provide vaccination advice and
information and links for how to
book your vaccination.
healthywa.wa.gov.au
health.gov.au
SUE SHAPLAND RN, BN, MSCN
“There is so much happening around us at present that we can forget to take care
of ourselves. I had forgotten to do my own health checks and had cast aside those
reminder letters from my GP thinking I would do them soon.
I work in general practice and happened to speak to a general practitioner a few
weeks ago who said that there were a lot of patients coming to see her who had put
off their usual checks, and unfortunately the results coming back were not great.
If only they had had them done when they were due, she said.
This really hit me! Yes, life is super busy and we CAN overlook our health and wellbeing. I went home
and booked those belated tests in. All is well – thank goodness – but it is a keen reminder to keep looking
after our health even in these strange times of living within a pandemic.
Please keep up to date with those health checks so that you can continue to be a force in the world!”
TRACEY HOCKEY, MSWA CLIENT & EDITORIAL CONTRIBUTOR
14

NURSING
ARE YOU PRACTICING
GOOD HEALTH MONITORING?
Whether you have a chronic illness or not, there are recommendations to regularly monitor your
general health and wellbeing.
The Victorian Government’s Better
Health initiative (betterhealth.
vic.gov.au/healthyliving/healthchecks)
is just one great resource.
Regular health checks can prevent
many diseases and catch others
before it's too late to change their
course. Some health checks and
screening tests can help prevent
serious illness such as cancer.
Regular self-checks are
recommended (eg skin checks,
breast self-examination for women
and testicular checks for men)
along with checks of your eyesight,
teeth, gums, and those ordered or
performed by your GP (eg blood
tests and screening).
Speak to your GP, who will provide
tailored advice about what tests you
may need and how often.
Recommended screening:
/ Regular monitoring of your
blood pressure, weight, and
cholesterol; frequency depends
on your age and risk of heart
disease or stroke.
/ Diabetes screening; depending
on your risk of Diabetes Type
2. The blood tests may require
fasting.
/ Bowel cancer screening; The
National Bowel Cancer Screening
Program provides a home
sample kit and recommends
people aged 50 to 74 years have
a test once every two years.
Up to 90% of bowel cancers
can be successfully treated if
detected early.
/ Bone density test (DEXA) to
determine the health of your
bones; Osteoporosis is a disease
that causes bones to become
brittle. Risk factors include a thin
build, early menopause, aged
over 70 years, and long-term use
of cortisone medication.
Some gender-specific screenings
you might like to think about
include:
For women:
/ Cervical screening test: this is
important and can pick up signs
of irregularities that could lead
to cervical cancer if not treated.
Cervical cancer is one of the most
preventable cancers. Frequency
of tests depend on your age and
any family history.
/ Mammogram: this is recommended
every two years. If you have a family
history it will be more frequent.
For men:
/ Prostate cancer screening:
population-based screening is
not recommended, so discuss
this with your GP. If you’re aged
50-70, a blood test (PSA) may be
deemed appropriate.
/ ECG: a non-invasive and painless
medical test that detects cardiac
(heart) abnormalities by measuring
the electrical activity generated by
the heart as it contracts.
For all:
/ Sexual health: testing for sexually
transmissible infections and
erectile dysfunction or other
sexual problems can be discussed
with your GP.
In addition, monitoring your
mental health and seeking advice
and support is also recommended.
We don’t think twice about getting
our vehicles regularly serviced and
checked when things aren’t right;
self-care is so important and you’re
worth it!
SUE SHAPLAND BN
15

PAIN & PAIN MANAGEMENT SERIES
Welcome to the second instalment in our series of articles on pain and pain management.
Below, MSWA Counsellor Lisa Papas and Neurological Liaison Nurse Bronwyn Innes, who has a speciality
background in pain management, give an overview of strategies for chronic pain management.
Future editions will explore some of these strategies in greater detail.
CHRONIC PAIN MANAGEMENT STRATEGIES
In scientific literature there is no definitive cure for most chronic pain conditions. The aim
of treatment is to manage pain so that physical and emotional functioning is restored and
overall quality of life improved.
While medications such as codeine
or other opioids are sometimes
prescribed for chronic pain, research
has shown they are not effective in
the long term.
Non-pharmacological ways to
manage your pain include:
1. Psychological approaches such as:
/ Cognitive Behaviour Therapy
(CBT) or other forms of
psychotherapy through a
qualified therapist can help to
solidify techniques for pain relief.
/ Daily relaxation techniques
- Guided imagery meditations can
help shift attention from pain.
- Use deep breathing techniques
that provide relief, focus and
distraction from pain.
- Music as relaxation: sound and
rhythm have proven benefits for
soothing and distracting when
in pain.
/ Practicing Mindfulness
- Meditation.
- Focused breathing.
- Acceptance as a technique for
coming to terms with pain.
/ Learning desensitisation.
/ Using distraction.
/ Finding support. Seek out
qualified psychological therapists
to work with you through these
various modalities.
2. Physical therapies such as:
/ Daily stretching and walking.
/ Pacing activities throughout the
day.
/ Gentle exercise.
/ Hydrotherapy.
/ TENS (Transcutaneous Electrical
Nerve Stimulator).
/ Superficial heat and cold.
3. Complementary and alternative
therapies such as acupuncture,
massage and other supplements
can also provide relief.
4. Eating a healthy diet and
improving sleep also contribute
to wellbeing and overall quality
of life.
Evidence shows that people who
are actively involved in managing
their chronic pain on a daily basis
have less disability than those who
rely on passive therapies such as
medication or surgery.
Chronic pain is a complex experience
which is influenced by physical,
psychological and social factors. As
such, the best way to manage it is
to address all the factors affecting
your pain. It is important to try to
keep a positive attitude until you
find a plan that works for you.
In our next article, we will expand
on the psychological approaches to
pain management.
LISA PAPAS
MSWA COUNSELLOR
BRONWYN INNES
MSWA NEUROLOGICAL
LIAISON NURSE
16

COUNSELLING
CONNECTING
WITH NATURE
It was a long, wet winter and many of us are feeling the effects of a lack of sunlight and being
‘stuck inside’. The effects of seasonal affective disorder (SAD) have been well documented,
where the lack of getting outside and the impact of low vitamin D impacts our mental and
physical health.
I have written before about the
benefits of animals on your mental
and physical health. I am now
inviting you to expand this, to
incorporate the natural world. The
medical profession is beginning
to recognise the benefits of
connecting with nature. Treatment
rooms and waiting rooms are
displaying images of nature on
the walls, incorporating sounds of
nature (such as water and birds)
and going as far as providing
subtle scents of nature, which
has increased positive outcomes
for patients.
Humans have an innate appreciation
of close contact with nature, which
is believed to have derived from
the living conditions under which
humans evolved. In other words, the
need to connect with nature is in
our DNA. The value and importance
of our connection to nature is
nothing new as historically many
cultures have included aspects of
nature and the use of medicinal
plants into their wellbeing and
health practices. However, there is
now clear scientifically researched
evidence for the beneficial effects
of exposure to nature and green
environments and the resulting
feelings of wellbeing this can
produce.
There are many ways to get
outside – gardening is a popular
pastime for many. In fact, scientists
have suggested that a type of
friendly bacteria found in soil may
affect the brain in a similar way
to antidepressants! I would not
suggest eating dirt, however getting
your hands and feet into the soil is a
great way to increase exposure and
activate those chemicals in your
brain that improve your mental
and physical health. Alternatively,
going for a walk or ride in the bush
or park, going to the beach, or even
a picnic outdoors are a few of the
many ways you can connect with
the natural world.
If getting physical outside is beyond
your capabilities maybe try sitting
outside with a book or just sitting
mindfully, while engaging fully
with the sights, sounds, smells, and
textures that surround you.
So, venture forth into the
‘great outdoors’ in whatever
way you can. Your physical
and mental health will thank
you for it.
For those of you who would like
to investigate this subject further
there is a document online called
‘Beyond Blue to Green’ which is
an Australian paper developed
by Beyond Blue and the Deakin
University.
KAREN BROWN
MSWA COUNSELLOR
17

PHYSIOTHERAPY
LOOKING TO NASA FOR
ASSESSING BALANCE PROBLEMS
Is your balance a bit ‘off’? Have you had a fall or two? Or are you worried about falling?
Balance is a complicated thing,
according to MSWA Senior
Physiotherapist Ben Matthews.
“The brain controls your balance
by receiving sensory information
from your eyes, muscles and
joints, and vestibular system
(structures located within the ears),
interpreting this information, and
then delivering an appropriate
muscular response,” says Ben.
“If this information is disrupted, say
as a result a neurological condition,
you may become more susceptible
to falls.”
MSWA owns one of a very small
number of Balance Master devices
in Western Australia. Development
of this device was originally funded
by NASA to test the balance of
astronauts after a space flight.
Now located at MSWA’s Butler
Services Centre, the Balance Master
is a high-tech system used by the
Physiotherapy team to isolate
a person’s response to different
sensory input scenarios.
The person stands or sits in the
Balance Master cubicle supported
by a harness while various scenarios
are tested. For some of the tests
the subject’s eyes remain open; for
others they are closed. The floor of
the cubicle and visual surround can
be set to be stable or to sway.
“By testing under these variable
conditions and isolating one
sensory input from others, we
can determine which factors are
compromising a subject’s balance,”
says Ben.
“It’s then possible to design a
physical therapy program, informed
by the evidence gained from the
Balance Master assessment, to
address these issues.”
An initial Balance Master test
provides a baseline of results.
Further assessments can be
conducted to determine if the
prescribed therapy is effective.
To find out more about how
Balance Master can improve
your wellbeing and function
call the MSWA Physiotherapy
team on 9365 4888.
“This year, I did a full assessment session on the Balance Master at MSWA
Butler. It took about 45 minutes. I found that the machine was easy to
stand in and the digital display screen was adequate and easy to follow the
prompts. It was very interesting to watch my movements on the screen. The
assessment mode was quite jolty and I had to have an assistant holding me
from behind. But the results of the assessment mean my physio can now
tailor my training to improve my balance and therefore improve my mobility.”
NICOLETTE MURPHY, MSWA CLIENT & EDITORIAL CONTRIBUTOR
18

MSWA CLIENT
TEEING UP FOR A NEW LIFE
IN ALBANY
“I’d raced motocross for 11 years, had a state title for BMX, I played off a 4 handicap at golf. I
was very sporty,” recalls Kim Graham. “So to suddenly discover I had this thing called MS was
a kick in the guts.”
Kim lives in the small wheatbelt
town of Kondinin and has been
living with multiple sclerosis since
2001. He was initially diagnosed
when pins and needles started to
spread through his legs. These days,
he’s lost use of his legs completely
and relies on a wheelchair to get
around. Kim is keen to point out
that – being a devoted Fremantle
Dockers fan – his wheelchair
is purple.
A country boy through-andthrough,
Kim spent most of his days
working on farms. He now lives in
the local retirement village, with a
care worker who comes in to help
him to dress, shower and do chores.
“I’m 6ft 4in, so when your legs don’t
work they just get in the way.”
“I’ve always been in the bush,”
explains Kim. “When I was a young
bloke, I came to Perth for four
months to work at Cottesloe Golf
Course. I realised I hated the city –
I’d blow my paycheck before the
weekend was over. There were too
many women and too many pubs!”
Now in his fifties, Kim’s trademark
good humour and charisma are still
going strong. He is a popular and
regular visitor to MSWA’s Margaret
Doody Respite House in City Beach.
“I like talking to the other residents.
The first time I came here I was
booked for three weeks, but they
kept me here for six because I’m
good value!
“And the people here are really nice
and helpful. The chefs are great –
Annette cooks the most amazing
food! When I’m at home, food isn’t
much of a priority for me.”
On his last visit to Margaret Doody
House, MSWA staff arranged for
him to try the ParaGolfer chair at
Wembley Golf Course. Kim explains
how it felt to swing a golf stick for
the first time in 20 years. “It felt
wicked,” he says with a grin. “I had
tears in my eyes.
“I’ve still got my old golf sticks in the
living room. I clean them regularly,
and I’ll look at them and say ‘one
day I’ll get to swing you again’.”
However, Kim is realistic about the
future. “The MS is getting worse.
It’s harder and harder to live by
myself. I find it harder every day to
do things. It’s gonna happen,” he
says, speaking about the possibility
of supported accommodation.
Kim’s sister Nicole lives on a farm
near Bluff Knoll, so when she heard
that MSWA was building a new
$7m residential facility in Albany
for people living with neurological
conditions, she began making
enquiries about getting Kim on
the waitlist for one of the 10 highsupport
accommodation units that
will be available in 2022.
Pending NDIS approval, Kim could
soon move into his own unit, with
access to onsite 24/7 support, as well
being next door to MSWA’s newest
state-of-the-art Services Centre.
The thought of such easy access to
physiotherapy, the Outreach group,
nursing and occupational therapy
is comforting to Kim. “You don’t
get nothing like that in the bush,”
he explains. “There’s no one in
Kondinin who can do physiotherapy
for my condition. And at the
Kondinin Hospital, all the handrails
are too low because they don’t get
many 6ft 4in blokes in wheelchairs
coming in!”
The milder Albany summers
and being closer to his sister
and her family are also a
draw for him.
Whilst Kim is saddened by the
thought of leaving his closeknit
community, he is grateful
that a move to high-support
accommodation in Albany might
be possible. He winks as he says,
“Tell ‘em to paint one room purple
and I’ll have that one!”
19

OCCUPATIONAL THERAPY
WHAT IS ASSISTIVE TECHNOLOGY
AND HOW CAN IT HELP YOU?
Ever since the introduction to the NDIS, the term ‘assistive technology’ has become more
widely known. The World Health Organisation describes assistive technology as an
umbrella term covering the systems and services related to the delivery of assistive products
and services. On the other hand, assistive products maintain or improve an individual’s
functioning and independence, thereby promoting their wellbeing.
The aim of the assistive technology
and its products is to help people
with disabilities bridge the gap
between their disability and the
ability to be able to pursue their
goals. There are many types of
assistive technology and it can be
daunting to know which would suit
your needs. It is therefore important
to involve a health professional who
understands the disability, your
environment, and the goals that
you would like to achieve. It is also
important to note that the device is
not meant to be an end in itself but
rather a tool as part of an ongoing
process to achieve your goals.
WHO CAN BENEFIT FROM ASSISTIVE
DEVICES OR TECHNOLOGY?
This may be surprising but the
majority of the population can
and is benefiting from assistive
technology (AT) in different areas of
life. It not only benefits the users of
AT but also the people around them
such as carers, teachers, employers
and other people in the community.
For example, a ramp from the
parking area into the shopping
centre will not only benefit
wheelchair users but also the
general population such as mums
with prams. Or software that
enlarges print on phones and
computers will not only benefit
people with a vision impairment,
but will also benefit those who are
ageing.
Appropriate and relevant access
to these devices and the adoption
and application of AT can provide
individuals with opportunities to
participate in community life which
will in turn benefit the rest of the
community.
20

TYPES OF ASSISTIVE TECHNOLOGY
Assistive technology can range in types and categories and can be disability-specific or mainstream. In recent years,
there has also been more of a shift into making mainstream products such as tablets and computers more accessible
to enable access for a person with a disability.
The following are some categories and examples of assistive devices. Please note that this is not an exhaustive list
and development in assistive devices are constantly improving:
Category
Mobility aids
Transfer equipment
Seating and positioning
Temperature control
Computer technology
Physical modifications
Adaptive devices for
daily living
Recreation
Communication
Examples
Wheelchairs, scooters, walkers, canes, crutches, prosthetic devices, orthotic devices,
guide dogs or assistance animals
Hoists, transfer benches, vehicle transfer aids
Recliners, adapted seating, cushions
Air conditioners, cooling devices such as pillow and mattress protectors, cooling vests
Computer software and hardware such as screen readers, screen enlargement apps
and software, in-built accessibility programs in mainstream devices
Modification for the built environment of the home or workplace including
installation of grab rails, ramps, increasing doorways, circulation spaces. This can
also include modifications of vehicles to enable safe transfers or driving techniques.
Adaptive switches and utensils, specialised handles and grips, dressing aids,
personal alarms, adapted personal hygiene aids
Devices that enable participation in recreational and sporting activities include
adaptive controls for video games, cuffs for grasping paddles or racquets etc.
Devices that enable communication for people with speech and/or hearing difficulties.
Examples include communication boards, text to voice software and specialised apps.
MATCHING YOU TO THE RIGHT ASSISTIVE TECHNOLOGY
Matching the person to the right AT for the right
task can be a complex process that involves careful
consideration of the person and their family members,
the environment, the technology and the task involved.
It involves technical knowledge of equipment and its
interactions with the person and environment and a
consultation process with the individual to come up with
a product that would fit best to the individual’s needs.
Before getting any equipment, it might be useful to
consider these questions:
/ What is my goal task to complete?
/ What barriers are there that prevent me from
achieving this goal?
/ Who can assist me with selecting the right AT?
/ Where can I find what AT is available?
/ How will I determine which brand and features are
the best for my needs?
/ How will the AT be paid for?
/ Can I trial the equipment?
/ What kind of training do I need to use the AT?
/ Who should I contact if I have follow up questions or if
the equipment breaks down?
WHERE TO SEEK HELP
The MSWA Allied Health team comprises Occupational
Therapists, Physiotherapists, Speech Pathologists and
Nurses who can assist with assessing your needs and
goals and sourcing the right fit for you in terms of your
assistive technology needs.
Your Support Coordinator or MSWA Client Liaison
Coordinator can also assist with the funding from your
NDIS plan if appropriate.
You can also find out more information from Disability
Gateway – a government portal for people with
disabilities to source and connect with information and
services that is relevant to their needs. It has a specific
Assistive Technology page that can link you to more
information and services depending on your needs and
criteria: disabilitygateway.gov.au/aids-equipment
CRYSTAL CHAN
MSWA OCCUPATIONAL THERAPY MANAGER
21

Farewell
Marcus!
In October, we said farewell to our CEO Marcus Stafford
after nearly two decades of service to MSWA.
Marcus, from all of us at MSWA, thank you.
22

23

BRAND, MARKETING & SALES
COMMUNITY
FUNDRAISERS IN FOCUS
MSWA Client Dymathy
Hollands and family.
Boots, Bubbles and BBQs, what do they have in common you might ask? MSWA Community
Fundraisers, they come from all sorts of avenues!
COCKBURN LAKES FOOTBALL CLUB
FUNDRAISER
Boots were donned, as the
Cockburn Lakes Football Club
took to the field for their Round 15
Blockbuster against Nollamara on
Saturday, 24 July.
With the cause close to the heart
of the team, they were joined by
MSWA Client Dymathy Hollands,
who was diagnosed with MS 15 years
ago, and her family who helped to
spur the team on to victory.
With a triumphant win by the
team on the day, funds from the
sale of match day jerseys, raffles
and auction, and donations from
supporters of Glen Hollands from
Red Sands Suppliers, the fundraiser
raised a phenomenal $15,000!
Club President, Colin van Raalte
said, "The Cockburn Football Club
holds an annual charity game for
community groups, and with MSWA
close to our hearts it was certainly
one of the biggest fundraisers we
have held. We hope that the money
raised can help MSWA provide
much needed support and we at
the CLFC wish MSWA the very best
in the future."
BUBBLES & BLOWDRYS
Bubbles were flowing on Saturday,
2 October as Shenae Wilson and
the team at Shenae Wilson Hair in
Ocean Reef were blow-drying up a
storm in the name of raising funds
for MSWA.
Clients were treated to a grazing
board, cupcakes, raffle and other
treats, oh and don’t forget a glass
of bubbly or two as they were
pampered by the team.
Shenae has a close friend with
MS and wanted to help make a
difference. She and her team raised
over $1,100 from the day!
COFFEY IS COOKING, AGAIN!
MSWA Client Rhys Coffey was
diagnosed with Secondary
Relapsing Progressive MS in
November 2019, after many
investigations into the symptoms
he was experiencing.
A 10-year FIFO veteran from the
Pilbara, Rhys put his symptoms
down to the changing conditions
from life in Perth and in the Pilbara,
then he went from the fly-in fly-out
lifestyle to being a stay-at-home
dad overnight. After diagnosis, Rhys
found his life changed in so many
ways, physically and mentally.
24

On Sunday, 3 October, Wells Park
in Rockingham was abuzz as over
50 family and friends of Rhys’ came
together for a barbecue he had
organised to raise funds for MSWA,
as his way of giving back to those
who have helped him.
Guests were treated to a delicious
feast, with a sausage sizzle, pulled
beef and coleslaw rolls. Combined
with a raffle, an amazing amount of
$1,200 was raised.
Rhys is looking forward to
continuing to raise awareness for
MSWA and the various conditions it
supports. He hopes that his cooking
can help get the message out there!
Cooking has always been
something that Rhys has enjoyed
but it has now become a passion.
“If you’re not cooking, no one is
looking,” he explains, something
that has become his slogan.
Rhys has support from PGC
Resources, Cavanagh Constructions,
Mike McKenzie Mortgage Brokers,
RibRack BBQ, Layll Building
Solutions and other barbecue
enthusiasts who are following him
on Instagram.
MSWA Client Rhys Coffey.
“My favourite barbecue/Weber
recipe is pulled lamb, which is really
easy. I rub the lamb with RibRack
sheep rub and put in the Weber on
indirect heat at 2250F for four hours
or until the internal temp reaches
1650F, then I wrap in foil for another
four hours or until the temp reaches
2030F. Then I let it rest in an Esky for
up to one hour and then – enjoy!”
TRISH WATSON
COMMUNITY EVENTS &
FUNDRAISING COORDINATOR
BLOOMING DISORDERED EXCHANGE
“Blooming Disordered Exchange is a response to my own
understanding and response to my diagnosis of multiple
sclerosis. Through this piece I aim to create awareness of the
chronic illness to an audience who wouldn’t necessarily have
a connection to the degenerative autoimmune disease.
As MS does not discriminate between male and female,
this genderless clay bust provides the platform for intricately
woven neurons formed from junk mail roses, salvaged cables
and beads. Just as myelin sheath damage exposes nerves in
those with MS and interferes with the exchange of messages
between the brain and spinal cord, several cables in the
sculpture have exposed copper wire due to damaged plastic
insulation coating.”
MSWA CLIENT, RACHAEL LEMON
25

VOLUNTEERING, CAMPS & RECREATION
VOLUNTEERS AND CAMPS UPDATE
NEW MANDATORY REQUIREMENTS
FOR VOLUNTEERS
Over the past few months, I have
been working closely with our
volunteers to provide them with
information regarding the NDIS
and its mandatory requirements for
anyone working closely with NDIS
Clients. Many of our volunteers have
been with us for over five years
and although their roles have not
changed, these new requirements
have resulted in additional training
and security checks.
All staff and volunteers working
with Clients must now complete the
mandatory NDIS Worker Screening
Check and the NDIS Worker
Orientation Module. The online
Module, which takes about 90
minutes to complete, ensures that
we all have a sound understanding
of the NDIS principles and the rights
of the Clients we work with.
The NDIS Worker Screening Check
replaces the police clearance that
has previously been required.
Identification documents are
verified at the Department of
Transport for document verification
before the NDIS can begin its
screening process, and it is then
valid for five years.
Existing volunteers need to apply
for their NDIS Screening Check, but
have a bit more time, depending on
the currency of their police clearance.
To help with the process, we are
providing access to a computer
or laptop to allow our volunteers
to start their NDIS Screening
application and work through the
NDIS Online Orientation Module,
should they need it.
So, if you have not done this yet, or
if you have problems logging on,
please speak with your supervisor
or you can call me direct.
Is the effort worth it? Yes. Our
volunteers are an important asset
to the MSWA community. They
complement the work of our staff,
supporting them where there is
a need. And, after meeting with
several of our volunteers, I can also
see what volunteering really means
to them; it creates a great sense of
community and an opportunity to
give back.
To build on our existing volunteer
program, a survey was sent out to
all Client Services and Residential
Options-based volunteers to help
us determine how they feel about
their roles, training, and the level of
support they receive from us. The
results are being analysed as we
speak, and we hope to share them
with you in time.
I am also pleased to say that the
MSWA Volunteers brochure has
been refreshed and will soon be
distributed across WA volunteer
centres. We have a number of
positions to fill, and this brochure
will help to extend our reach to a
wider audience.
CAMPS
We have, once again, applied to
Lotterywest for support with our
camp program. However, due to
them redirecting their funding
during the peak of the COVID-19
pandemic and the restrictions we all
faced during and after lockdowns,
our program has been impacted
temporarily.
Fingers crossed, camps will return
in 2022. Tentative bookings have
been made for the Carers Camps
at a quiet retreat in Safety Bay in
March. I am sure by then there will
be much joy to be able to get away
again. Dates will be posted at our
Outreach Centres, and in Bulletin,
and previous attendees will be
contacted with more information.
More good news. MSWA Readathon
funding has been made available
for the Family Camp in October this
year. I look forward to my first-ever
camp, meeting the families and
giving their children a fun-filled
experience, flying fox and all!
For more information on volunteering
and camps, call me, Mala
Padmanathan on 6454 3184 or email
mala.padmanathan@mswa.org.au
MALA PADMANATHAN
COORDINATOR CAMPS
& VOLUNTEERS
26

PHYSIOTHERAPY
Q&A WITH BOB MASEK,
CHAIR PING INVENTOR
Have you witnessed a game of ‘Chair Ping’ taking place in an Outreach Centre near you?
The modified equipment is the invention of MSWA Client Bob Masek and his wife Maria.
We asked Bob all about this adapted form of table tennis.
How did the idea for Chair Ping
come about?
My home visiting physiotherapist
James Beckett brought with him
a badminton set. The idea of how
to practice eye-hand coordination
was good, but the unpredictable
wind in the backyard toyed with
the badminton ball like a cat with a
mouse. James suggested that ping
pong might be a better idea.
I bought a ping pong table, but
it turned out that the table was
much too big. A player sitting on a
wheelchair in one spot is unable to
return a ball that is placed out of his
bat reach.
I had parallel bars stored in the
shed, and a melamine board laying
on the floor in the corner – it was
the perfect dimension, measuring
1200x2400mm. It was love at first
sight. I married the bars with the
melamine board and CHAIR PING
was born.
I solved the table tennis disadvantage
by shortening and narrowing the
Chair Ping table by 34.00cm and
32.50cm respectively.
For a better measure, I also extended
the length of the standard butterfly
bat by 16cm.
Scotty my social worker lent his
woodworking knowledge, and my
wife of 46 years and full-time carer
Maria made three chair ping tables
from scratch to finish by herself.
They are now installed in three
different MSWA Outreach Centres.
Can you explain the rules in a
nutshell?
The rules of Chair Ping are exactly
the same as for table tennis. The
only difference is that the player
does not move around the table, but
plays while sitting on a wheelchair
or chair.
Getting up from the chair during
the game in an attempt to return
the ball to the opponent is penalised
by losing one point.
Is there anything else you’d like to
tell us?
The game of Chair Ping is a secret
weapon that has the miraculous
ability to cultivate honesty, respect,
a sense of fair play, and create in
the body ‘happy hormones’ such
as dopamine, serotonin, oxytocin
and endorphins.
Many thanks for your
questions and especially your
interest in Chair Ping and
spreading the word about it.
27

ACCOMMODATION & OUTREACH
AN AB COLLARD ORIGINAL FOR
MARGARET DOODY HOUSE
Residents and staff at our Margaret Doody Respite House have been delighting in a beautiful
new painting, which was recently donated by MSWA Client and regular respite resident,
Kim Graham.
Kim hails from Kondinin and says
he used to play footy with Ashley
Collard (aka Ab Collard, NAIDOC
Indigenous artist of the year 2013).
Kim explains, “I asked Ashley to
paint something for MSWA. Then
I bought it off him and donated it.
The words in the outer circle are the
Aboriginal seasons.”
Kim says it was a means of showing
his appreciation to the team at
Margaret Doody House.
It’s not the first time Kim has given
back to MSWA. “Years ago, I raised
money for MSWA by seeing how
far my gopher would go on one
charge. I charged people $5 a guess.
Personally, I guessed it would last
around 11 kilometres.
“I left Kondinin at 7.30am, travelled
25km to Kulin, 25km back to
Kondinin, and then circled around
Kondinin 11 times! The battery finally
ran out at 50.9km. We couldn’t
believe it, no one had guessed
MSWA Dreaming, Ab and Kelly Collard, 2021, acrylic on canvas
anywhere near it! Fortunately, it artwork, “To me, it is an appreciation
conked out right outside the pub, of the quality service we endeavour
so everyone went in to the hotel, to provide to each of our Clients.
where they put on free food and In particular, I like the concept
alcohol. I remember we raised and title of the artwork being
$6,000 for MSWA.”
MSWA Dreaming.”
Manager of Margaret Doody House,
MSWA would like to thank
Alimul Tasin, says of their new
Kim for his years of support.
EXPRESSIONS OF INTEREST: OT GROUPS
The Occupational Therapy team is excited to be recommencing our group sessions following a hiatus
since the beginning of the pandemic. We are currently taking expressions of interest for anyone who is
interested in attending the following group sessions:
/ ‘Occupational Therapy and You’
/ Assistive technology solutions
/ Fatigue management
/ Cognition strategies
If you would like more information with regard to the groups, please email your interest to
ot.referrals@mswa.org.au OR contact us on 9365 4854.
28

OCCUPATIONAL THERAPY
INCLUSION FOR ALL
“Medicine adds days to life, occupational therapy adds life to days” - Madeleine Horton,
National OT Morning Team, OT Week 2019
Monday, 25 October marked
Occupational Therapy (OT)
Week where we came together
to celebrate the profession of
Occupational Therapy and promote
the many ways OTs help all people
of all abilities to reach their potential.
This year’s theme was participation,
inclusion and independence,
putting a spotlight on the role that
OTs play in supporting people to do
activities that they find meaningful.
Occupational Therapists at MSWA
are passionate about helping
our Clients reach their potential
through their participation within
the community. Whether it is
getting out of bed, continuing your
hobby or interests, or just going
to the shops or to the beach – we
are always journeying with you
to empower you to reach your
goals and full potential. We do this
through assessments, navigation
of funding, provision of equipment,
and assistive technology and
education around strategies and
skill development. It is our hope that
through our work with you, we can
continue to promote independence
in your life and increase your
meaningful participation within the
community.
Ros Harman’s article in the last
Bulletin about imagining a world
that was designed for people with
disability resonated with those of us
in the OT team. OTs are privileged
to be able to work with Clients to
advocate for change within the
community and to continually
promote participation, inclusion
and independence within our
communities.
While we continually work
towards that goal as a community,
there are several initiatives and
organisations which seek to bridge
the gap between disability and the
community to enable higher levels
of access into community life. These
are some of them:
COMPANION CARD
The Companion Card is a national
scheme that enables eligible people
with lifelong disability to participate
at venues and activities without
incurring the cost of a second ticket
for their companion for participating
affiliate organisations. These can
include concerts, sporting events,
movies, and performing arts. Learn
more about the Companion Card at
wacompanioncard.org.au
CHANGING PLACES
‘Changing Places, Transforming
Lives’ is the theme of this
organisation. They aim to provide
suitable facilities for people who
cannot use standard accessible
toilets and go above and beyond
to provide toilets that have ceiling
hoists, additional circulation space,
privacy screens and adult sized
change tables to meet the needs
of people with complex disabilities
and their carers. To access these
toilets and for their locations,
an MLAK key can be applied for
through changingplaces.org.au.
DISABILITY GATEWAY
Disability Gateway is a new
government initiative which is
designed to help people with
disability, their families and carers
find information and connect
them to services and supports
that they need in Australia. It has
a website, disabilitygateway.gov.au,
a phone line (1800 643 787) and
a Facebook page and covers all
areas of life including: Income and
Finance, Employment, Aids and
Equipment, Housing, Transport,
Health and Wellbeing, Everyday
Living, Education, Leisure, and
Legal Rights.
CRYSTAL CHAN
MSWA OCCUPATIONAL
THERAPY MANAGER
29

ACCOMMODATION & OUTREACH
OUTREACH HAPPENINGS: ROCKINGHAM
After having featured both Beechboro and Wilson Outreaches in Bulletin this year, this edition
will tell you all about Rockingham Outreach, formerly known as ‘Southside’.
The longevity of the group goes
back well over 20 years. The group
began meeting at Lotteries House
in Rockingham and was staffed
by volunteers. It was an extremely
active group of men and women
driven by the late Barry Wakelam
and his wife Jan. Both Jan and Barry
were part of Southside into their
eighties and it was a huge part of
their lives.
Southside’s home after Lotteries
House was Seabrooke Avenue in
Rockingham. In 2010, I became a
part of this group and have many
happy memories of the following
four years at Seabrooke Avenue.
One of the most treasured days was
when a young MSWA Ambassador,
Josh Kennedy, came to visit. There
was a sea of blue and yellow
throughout the house and the hype
was incredible at having a West
Coast Eagles player in our midst!
To this day, the group has some
very staunch Eagles supporters in
attendance. By 2014, another venue
was sourced, as the Friday group
had grown so much that it was no
longer practical.
The new premises became – and
remain at – 31 Council Avenue in
Rockingham. The days of opening
have expanded and currently we run
three Outreach groups per week.
Clients can access physiotherapy
and other allied health services
whilst also attending Outreach.
On a Tuesday, ten very busy ladies
attend. They love doing craft, with
many of their clever creations
decorating the Outreach room.
The ladies really enjoy the social
interaction with their peers and
often say this is what keeps them
so positive. This group particularly
enjoys going to Respite at MSWA
Treendale Gardens together and
they have become a force to be
reckoned with!
The beginning of this year saw a
men’s Outreach group start on a
Wednesday, which has become
very popular. All attendees are as
enthusiastic as each other and are
able to share their experiences,
which often isn’t easy for them.
They have become a very close-knit
group.
Friday remains the busiest day of
the week at Rockingham Outreach.
Many Clients still attend who were
there in the early days at Seabrooke
Avenue. Ron Farnham, one of
the ‘founding members’, will this
month be celebrating his 80th
birthday. Any excuse for a party as
the saying goes and I have it on
good authority that Ron’s birthday
will be no exception.
Peta McCormack is the Rockingham
Outreach Coordinator, with support
from Care Support Workers Lynne
Fitzgerald, Carmen Archibald and
Lisa Rudyk. Rosemary Hall is the
Kitchen Supervisor and together
the team provide Clients with
activities each day, as well as a
delicious two course lunch. Monthly
programs are set up and the aim
of Outreach is for Clients to feel at
home and have a happy and fun
environment to gather with one
another. This is very evident when I
visit Rockingham and is a credit to
the staff above.
As always, Outreach staff are
extremely thankful for the many
volunteers who spend their time
helping with activities, particularly
in the kitchen. Thank you to Bryan,
Faye and Jill who are an intricate
part of the team on their respective
days.
If you are reading this and would like
to find out more information about
how you could become part of an
Outreach group at Rockingham
I can be reached on 9365 4830 or
0409 167 380. Alternatively, email
nicola.ryan@mswa.org.au
NICOLA RYAN
SENIOR OUTREACH COORDINATOR
A NEW ROWING MACHINE FOR MSWA WILSON
We could have rowed to North America in the time it’s taken for the new rowing
machine to arrive at MSWA Wilson! When our old rower broke in January, we ordered a
replacement, but due to the surge in people purchasing home exercising equipment
during lockdown, it was on backorder for months and only arrived in October.
It’s great to see Clients back on the machine.
A heartfelt thank you to MSWA Client Frank Montgomery, who generously donated
$1,000 towards the new rower, pictured here putting it through its paces!
30

OUTREACH CHRISTMAS CLOSURE DATES
Outreach Centre Last date for attendance Re-opening
Albany 17 December 2021 14 January 2022
Beechboro 17 December 2021 10 January 2022
Bunbury 15 December 2021 12 January 2022
Rockingham 17 December 2021 11 January 2022
Wilson 16 December 2021 10 January 2022
Margaret Doody Respite House will be closed for refurbishment from
Wednesday 22 December 2021 to Tuesday 1 February 2022.
31

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