MSWA Bulletin Magazine Spring 2021
What is assistive technology and how can it help you? | Good health monitoring practices | Pain and pain management series: Part 2 | Farewell Marcus Stafford
What is assistive technology and how can it help you? | Good health monitoring practices | Pain and pain management series: Part 2 | Farewell Marcus Stafford
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THE OFFICIAL MAGAZINE OF <strong>MSWA</strong><br />
<strong>Spring</strong> <strong>2021</strong><br />
mswa.org.au<br />
INSIDE<br />
/ What is assistive technology<br />
and how can it help you?<br />
/ Good health monitoring practices<br />
/ Pain and pain management<br />
series: Part 2<br />
Blooming Disordered Exchange by <strong>MSWA</strong> Client<br />
Rachael Lemon (more on page 25).<br />
/ Farewell Marcus Stafford
NURSING<br />
WILSON CENTRE<br />
29 Parkhill Way 9365 4888<br />
Fax 9451 4453<br />
Freecall 1800 287 367<br />
See Health Team Dept contacts on this page<br />
SERVICES DIRECTORY<br />
GENERAL MANAGER –<br />
MEMBER & CLIENT SERVICES<br />
Nicola Washington 9365 4840<br />
MANAGER ALLIED HEALTH SERVICES<br />
Carol Chong 9365 4873<br />
NDIS TEAM 9365 4824<br />
OUTREACH GROUPS<br />
Wilson Outreach 9365 4830<br />
Beechboro Lodge 9377 7800<br />
Southside Outreach 9592 9202<br />
Albany Outreach 6154 5149<br />
Bunbury 6454 2800<br />
GENERAL MANAGER -<br />
STRATEGIC SUPPORTS<br />
AND RESIDENTIAL OPTIONS<br />
Sue Shapland 6454 3174<br />
MARGARET DOODY RESPITE HOUSE<br />
Manager, Alimul Tasin 9385 9574<br />
FERN RIVER ACCOMMODATION<br />
Manager, Danuta Figurska 9356 2747<br />
HAMILTON HILL ACCOMMODATION<br />
Manager, Jo Nouwland 9331 5780<br />
TREENDALE GARDENS<br />
RESPITE & ACCOMMODATION<br />
Manager, Linda Kidd 9725 9209<br />
BUTLER SUPPORTED<br />
ACCOMMODATION FACILITY<br />
Manager, Chris Rush 6154 5120<br />
CONTACT US<br />
If you would like to comment on anything<br />
you read in this <strong>Bulletin</strong> please email<br />
bulletin@mswa.org.au or write to<br />
<strong>MSWA</strong>, Locked Bag 2, Bentley DC WA 6983<br />
For general feedback or complaints please<br />
contact Michelle John 6454 3173 or<br />
feedback@mswa.org.au<br />
EDITORIAL WORKING GROUP<br />
Sue Shapland, Nicola Washington, Libby<br />
Cassidy, Jamey Claffey, Tracey Hockey and<br />
Nicolette Murphy.<br />
CONTRIBUTORS<br />
Geoff Hutchinson, Carol Chong,<br />
Dajana Tesevic, Vanishree Chetti,<br />
Denise Vogels, James Beckett<br />
and Crystal Chan.<br />
The Editorial Working Group welcomes<br />
unsolicited submissions.<br />
All articles are subject to a reviewing<br />
process. The views expressed are those<br />
of the authors and do not necessarily<br />
reflect the view of <strong>MSWA</strong>’s staff, advisors,<br />
directors or officers.<br />
Our neurological liaison nurses are usually the first point of contact after the<br />
neurologist’s diagnosis.<br />
VANISHREE CHETTI, MANAGER: 9365 4818 OR COMMUNITY NURSE: 9365 4888<br />
PHYSIOTHERAPY<br />
Our team provides treatment interventions to develop and maintain mobility<br />
and function.<br />
JAMES BECKETT, MANAGER: 9365 4837 OR PHYSIO DEPARTMENT: 9365 4834<br />
OCCUPATIONAL THERAPY<br />
Occupational Therapists enable Clients to continue their work and other interests<br />
for as long as possible through advice, aids and equipment.<br />
CRYSTAL CHAN, MANAGER: 9365 4804 OR OT DEPARTMENT: 9365 4888<br />
SPEECH PATHOLOGY<br />
Our Speech Pathologists assess, diagnose and create individualised treatment<br />
programs for Clients who experience swallowing and/or communication difficulties.<br />
PAMELA WINDRAM, MANAGER: 6454 3140<br />
DIETETICS<br />
Dietitians are university-qualified nutrition experts who promote general health<br />
and disease prevention/management through dietary changes.<br />
PAMELA WINDRAM, MANAGER: 6454 3140<br />
COUNSELLING, PEER SUPPORT & HEALTH EDUCATION<br />
Talking with a Counsellor creates a safe, respectful and confidential environment<br />
for you and those close to you to explore options, create change or gain<br />
understanding about your life.<br />
TO MAKE AN APPOINTMENT PLEASE CALL: LISA PAPAS, MANAGER: 9365 4836<br />
OR COUNSELLING DEPARTMENT: 9365 4811<br />
SOCIAL WELFARE<br />
Social Welfare Officers assist Clients and their families to access services<br />
and supports to remain living independently at home. They specialise in case<br />
management, advocacy and sourcing funding options.<br />
KATH KNIGHTS, MANAGER: 9365 4835<br />
COMMUNITY SUPPORT<br />
We provide long-term and time limited in-home supports including assistance<br />
with personal care for people with MS, to help them remain in their homes.<br />
Care and supports are provided through a combination of funding from the<br />
Department of Communities - Disability Services, and our own fundraising efforts.<br />
VICTORIA AMEY, MANAGER: 9365 4851<br />
CUSTOMER ENGAGEMENT DEPARTMENT<br />
Our experienced teams will provide you with personalised support right<br />
throughout your NDIS journey. From helping you to access the NDIS to working<br />
with you to get the most from your plan, our trained staff are here to help.<br />
GEOFF HUTCHINSON, MANAGER CUSTOMER ENGAGEMENT: 9365 4879<br />
CAMPS & RECREATION<br />
<strong>MSWA</strong> provides separate recreation camps for Clients, carers, and families,<br />
primarily funded by Lotterywest, and for a nominal cost to participants.<br />
These camps provide a break from daily routines, and strengthen friendships<br />
and support networks.<br />
MALA PADMANATHAN, COORDINATOR FOR CAMPS & RECREATION: 6454 3184<br />
AGED CARE<br />
<strong>MSWA</strong> delivers all levels of Home Care Packages to eligible people with<br />
a neurological condition who are over 65. Services are delivered by staff<br />
specifically trained in home care for older Australians who are living with a<br />
neurological condition.<br />
JUDITH CLARK, AGED CARE COORDINATOR: 9365 4807<br />
2
WELCOME<br />
Welcome to the spring <strong>2021</strong> edition of <strong>Bulletin</strong>. We hope you enjoy the news, stories and<br />
service information we have brought to you this quarter.<br />
CONTENTS<br />
GENERAL MANAGER STRATEGIC<br />
SUPPORTS AND RESIDENTIAL<br />
OPTIONS ........................... 4<br />
GENERAL MANAGER<br />
MEMBER & CLIENT SERVICES ....... 5<br />
<strong>MSWA</strong> CLIENT FORUM <strong>2021</strong> ......... 6<br />
SPOTLIGHT ON: ASSOCIATE<br />
PROFESSOR LUCINDA BLACK. ...... 7<br />
RESEARCH ROUND UP. ........... 8-11<br />
STILL INDEPENDENT<br />
AS NDIA SCRAPS<br />
CONTROVERSIAL PLAN. ............12<br />
VALE DR GREG BROTHERSON. ......13<br />
COVID-19 VACCINATION UPDATE. .. 14<br />
ARE YOU PRACTICING<br />
GOOD HEALTH MONITORING? . .....15<br />
CHRONIC PAIN<br />
MANAGEMENT STRATEGIES. ........16<br />
CONNECTING WITH NATURE . .......17<br />
LOOKING TO NASA FOR<br />
ASSESSING BALANCE PROBLEMS. . 18<br />
TEEING UP FOR A NEW LIFE<br />
IN ALBANY .........................19<br />
WHAT IS ASSISTIVE<br />
TECHNOLOGY AND<br />
HOW CAN IT HELP YOU?. ....... 20-21<br />
FAREWELL MARCUS!. ........... 22-23<br />
COMMUNITY FUNDRAISERS<br />
IN FOCUS ...................... 24-25<br />
BLOOMING DISORDERED<br />
EXCHANGE . ....................... 25<br />
VOLUNTEERS AND CAMPS<br />
UPDATE. .......................... 26<br />
Q&A WITH BOB MASEK,<br />
CHAIR PING INVENTOR . ........... 27<br />
AN AB COLLARD ORIGINAL FOR<br />
MARGARET DOODY HOUSE. ....... 28<br />
EXPRESSIONS OF INTEREST:<br />
OT GROUPS. ....................... 28<br />
INCLUSION FOR ALL. .............. 29<br />
OUTREACH HAPPENINGS:<br />
ROCKINGHAM. .................... 30<br />
A NEW ROWING MACHINE FOR<br />
<strong>MSWA</strong> WILSON. ................... 30<br />
OUTREACH CHRISTMAS<br />
CLOSURE DATES ...................31<br />
3
STRATEGIC SUPPORTS<br />
AND RESIDENTIAL<br />
OPTIONS<br />
SUE SHAPLAND RN, BN, MSCN<br />
GENERAL MANAGER<br />
STRATEGIC SUPPORTS AND<br />
RESIDENTIAL OPTIONS<br />
“Only look back to see how<br />
far you have come.”<br />
Winnie the Pooh.<br />
Now, who knew Winnie the Pooh<br />
was so wise? How true is this<br />
great saying, and it applies in so<br />
many ways!<br />
There have – and will be – many<br />
times we reflect and remember<br />
where we have come from, but<br />
often we don’t do it enough. We are<br />
so busy looking forward and just<br />
doing the job, that we don’t stop to<br />
see what we have achieved and feel<br />
a bit proud. But we should.<br />
Take <strong>MSWA</strong> – we are 50 next year<br />
– that’s a long way to look back,<br />
but the journey is worth thinking<br />
about. Back in 1972, when MS was<br />
hard to diagnose and there were no<br />
treatments, a small number of WA<br />
folks established a support group.<br />
And look where we are now!<br />
There are over 12 treatments,<br />
diagnosis is much easier<br />
and <strong>MSWA</strong> now proudly<br />
supports people living with all<br />
neurological conditions.<br />
<strong>MSWA</strong> has grown significantly over<br />
the last 19 years in particular and<br />
experienced great success in so<br />
many ways, and that can be directly<br />
linked back to when Marcus Stafford<br />
joined the organisation as CEO. As<br />
you know Marcus said farewell to us<br />
in October; we all wish him well and<br />
he will be greatly missed!<br />
Under Marcus’ expertise and<br />
stewardship, with the support of<br />
the <strong>MSWA</strong> Board, management,<br />
and staff, we have achieved great<br />
success and risen to heights many<br />
can only dream of. At the core of<br />
this success has been the desire to<br />
advocate for, and support our Clients<br />
to have, a better quality of life and<br />
better outcomes. Pre-NDIS, <strong>MSWA</strong><br />
allocated funds (raised through our<br />
events, raffles and of course the<br />
Mega Home Lottery) to supplement<br />
government funding. This allowed<br />
us to build new accommodation<br />
and services centres and of course<br />
to grow our commitment to<br />
neurological research. Looking back<br />
really shows us how far we have<br />
come and what has been achieved.<br />
Then it’s head down and follow the<br />
course as there’s so much more to<br />
be done!<br />
On a personal note, I joined <strong>MSWA</strong><br />
in 2003, having been recruited<br />
by Marcus. The long list of<br />
achievements are certainly not lost<br />
on me. I would like to thank Marcus<br />
for being at the helm of what is now<br />
a super yacht and wish him all the<br />
best with his next chapter!<br />
We are really getting excited now<br />
as construction of the Albany<br />
development ploughs ahead<br />
and we plan to open in March<br />
next year. Both the supported<br />
accommodation units and the<br />
Services Centre will be amazing; I<br />
can’t wait to see the end product<br />
once it’s all fitted out.<br />
As most people have heard we have<br />
proudly committed $10 million for<br />
neurological research this year – that<br />
is amazing in anyone’s language. We<br />
are proudly supporting a number of<br />
WA-based projects and we will keep<br />
you updated on their progress and<br />
any opportunities for participation.<br />
The recent Client Forum showcased<br />
some of the talent and we did film<br />
the session and the links will be<br />
shared for those interested.<br />
<strong>Spring</strong> has sprung, although winter<br />
was threatening to return at one<br />
stage, and Christmas is looming. I<br />
hope we all get some family time<br />
over the break and that COVID<br />
doesn’t spoil our fun. I think the last<br />
eighteen months have reaffirmed<br />
how great it is to live in WA!<br />
Take care, we look forward to a new<br />
year with hopefully more freedom<br />
to move around for those itching to<br />
travel. Please stay safe.<br />
4
MEMBER &<br />
CLIENT SERVICES<br />
NICOLA WASHINGTON<br />
GENERAL MANAGER<br />
MEMBER & CLIENT SERVICES<br />
Welcome to the spring<br />
edition of our Member<br />
& Client Services<br />
<strong>Bulletin</strong>… and Christmas<br />
is almost here!<br />
The year is flying by, and we have<br />
been keeping busy with many<br />
exciting projects that are in the<br />
process of being implemented to<br />
deliver improved services to you,<br />
our Clients.<br />
Our Albany Services Centre<br />
and High-Support Accommodation<br />
facility is progressing well. I visited<br />
the site with Andrea Taylor at the<br />
end of September and it really<br />
is looking incredible. The space<br />
is fantastic and is going to be<br />
very special for our Clients to<br />
utilise services.<br />
It will also be a great place to<br />
work. We are already looking for<br />
expressions of interest from the<br />
local community across a number<br />
of roles. It’s a very exciting time<br />
and we are all looking forward<br />
to servicing the Great Southern<br />
region from this wonderful Centre<br />
and providing the much needed<br />
high-support accommodation with<br />
the 10 new units that are being built.<br />
We are also busy with the<br />
implementation of new IT systems<br />
across several of our business areas.<br />
We are upgrading and replacing<br />
our current systems to improve<br />
efficiency and service delivery. Our<br />
aim is to streamline our processes<br />
and improve our communication<br />
for both our staff and Clients to<br />
provide an improved experience<br />
for everyone. Implementations of<br />
these upgrades will continue well<br />
into 2022.<br />
Our Client Forum was held on<br />
15 September and was a great<br />
success. We were very lucky to<br />
have presenters from ECU, Curtin<br />
University and the Perron Institute<br />
who provided great insight into<br />
the latest research and technology.<br />
<strong>MSWA</strong> is very proud to contribute<br />
its largest donation to research<br />
with a record $10 million donated<br />
this year. This funding will continue<br />
to help and assist our partners<br />
with innovative research across<br />
neurological conditions. I would<br />
like to thank the staff involved in<br />
making this event enjoyable and<br />
successful. As always, we welcome<br />
your feedback and would love<br />
to hear from you about this<br />
event. Please email us at<br />
feedback@mswa.org.au<br />
I would like to take this opportunity<br />
to wish a fond farewell to our CEO<br />
Marcus Stafford. Marcus has been<br />
an inspirational leader and has<br />
driven <strong>MSWA</strong> to be the successful<br />
organisation it is today, supporting<br />
people living with neuro conditions<br />
and helping to improve their lives.<br />
Thank you, Marcus, for your fantastic<br />
leadership and friendship – you will<br />
be missed. Enjoy the next chapter<br />
of your life and I hope you get a<br />
chance to improve your golf swing.<br />
Finally... Christmas. Yes, we are<br />
nearly there. The good news is<br />
that we will be holding our Client<br />
and Volunteer Christmas Party on<br />
Thursday, 2 December <strong>2021</strong>. We<br />
missed our party last year, so we are<br />
looking forward to catching up with<br />
everyone and celebrating. Look out<br />
for more information on page 31.<br />
5
RESEARCH<br />
<strong>MSWA</strong> CLIENT FORUM <strong>2021</strong><br />
Thank you to all those who came along to another informative <strong>MSWA</strong> Client Forum on 15<br />
September. Special thanks also to our guest speakers who offered us an exclusive window into<br />
their respective fields of research and/or professional expertise:<br />
/ Professor Allan Kermode, The Perron Institute<br />
(pictured)<br />
/ Professor John Mamo, Curtin University<br />
/ Dr Onno van der Groen, Edith Cowan University<br />
/ <strong>MSWA</strong> Respiratory Physiotherapy team<br />
/ Vanishree Chetti, <strong>MSWA</strong> Manager Nursing<br />
/ Geoff Hutchinson,<br />
<strong>MSWA</strong> Manager Customer Engagement<br />
6
SPOTLIGHT ON: ASSOCIATE<br />
PROFESSOR LUCINDA BLACK<br />
Lucinda Black is a nutrition researcher at Curtin University.<br />
<strong>MSWA</strong> has been investing in her vital neurological research<br />
since 2016.<br />
“The people with MS I’ve<br />
met are so enthusiastic<br />
about making positive<br />
changes in their lives. And,<br />
as a researcher, that’s really<br />
inspiring for me as well.”<br />
LUCINDA'S RESEARCH JOURNEY<br />
“I started working in research about<br />
15 years ago,” explains Associate<br />
Professor Lucinda Black. “I was<br />
focusing on vitamin D and it led me<br />
to the study of multiple sclerosis,<br />
because there is a link between<br />
low vitamin D status and higher<br />
risk of MS. At the time, there was a<br />
big gap in knowledge around MS<br />
and diet in general. I realised there<br />
was an opportunity to develop<br />
stronger evidence.”<br />
Lucinda is currently leading a<br />
research program in diet and MS,<br />
here in WA. She explains that the<br />
program has two areas of focus:<br />
“One is to help strengthen the<br />
evidence we have around diet and<br />
MS so that we can better understand<br />
what diets, foods or nutrients might<br />
be beneficial for people. The second<br />
is sharing the information in a clear<br />
and accessible way.<br />
“There’s a lot of confusing<br />
information presented online and<br />
it’s very hard to navigate for anyone,<br />
but especially for people who might<br />
be under stress because they’ve<br />
had a serious diagnosis. So we’re<br />
designing an online diet education<br />
program. It’s tailored to people with<br />
MS, which is key.”<br />
Lucinda reveals that the education<br />
program is being co-designed<br />
by people with MS to ensure it<br />
reflects their needs, engages<br />
them, and ultimately educates<br />
them on ways to improve their<br />
day-to-day lives whilst living with a<br />
neurological condition.<br />
“What’s really exciting is that people<br />
with MS in WA have been so keen<br />
to be involved in research. They are<br />
volunteering their time, they have<br />
experience, they have knowledge<br />
and ideas. Without that input, we<br />
wouldn’t be producing such highquality<br />
research.”<br />
<strong>MSWA</strong>’S INVESTMENT<br />
<strong>MSWA</strong> began funding Lucinda<br />
Black’s research in 2016.<br />
“It was around that time that I’d<br />
identified that there was a lot of<br />
misinformation about diet in relation<br />
to MS, so I proposed a project that<br />
would help strengthen the evidence<br />
around it,” says Lucinda.<br />
“It was <strong>MSWA</strong> that funded that first<br />
project and, since then, through<br />
help from <strong>MSWA</strong>, I’ve developed a<br />
research team that now includes<br />
staff, students and many national<br />
and international collaborators, so<br />
we’re able to conduct impactful<br />
research, right here in WA.”<br />
KEEPING IT LOCAL<br />
Lucinda explains that there’s a<br />
really positive feeling amongst<br />
herself and other WA-based<br />
neurological researchers because of<br />
<strong>MSWA</strong>’s support.<br />
“Because of the high level of<br />
funding, we’re able to start research<br />
here. We may take it nationally –<br />
there might be multi-centre trials<br />
– but the research will always start<br />
in WA and that’s a real benefit for<br />
people living with neurological<br />
conditions here.”<br />
Lucinda says the Western<br />
Australians who take part in her<br />
research are a major part of what<br />
drives her. “What I’ve found is that<br />
people with MS are so interested<br />
and engaged. They are passionate<br />
about making changes in their own<br />
lives to help manage their disease. I<br />
find it really inspiring to be around<br />
people who are so proactive. It<br />
gives me hope for a positive future<br />
for people with MS and other<br />
neurological conditions.”<br />
Lucinda says she was thrilled about<br />
<strong>MSWA</strong>’s recent record-breaking<br />
funding announcement.<br />
“<strong>MSWA</strong> has funded my research for<br />
the past six years and they’ve just<br />
announced a huge contribution of<br />
$10m to neurological research this<br />
year. I’m absolutely delighted to be<br />
part of this funding. It couldn’t be<br />
a better time to be a researcher for<br />
neurological conditions in WA.”<br />
Lucinda will use this year’s funding<br />
to continue to grow a strong team<br />
here in WA who are working to<br />
answer the many unanswered<br />
questions people have about<br />
the role of diet in the onset and<br />
progression of MS.<br />
7
RESEARCH<br />
RESEARCH<br />
ROUND UP<br />
SUE SHAPLAND RN, BN, MSCN<br />
GENERAL MANAGER STRATEGIC SUPPORTS<br />
AND RESIDENTIAL OPTIONS<br />
FROM MULTIPLE SCLEROSIS<br />
NEWS TODAY<br />
Read more at:<br />
multiplesclerosisnewstoday.com<br />
MS symptoms often apparent<br />
years before diagnosis; Marisa<br />
Wexler MS; June 24, <strong>2021</strong>.<br />
A new study suggests that many<br />
people with multiple sclerosis (MS)<br />
experience symptoms several years<br />
before diagnosis.<br />
It has long been known people with<br />
MS tend to seek medical attention<br />
more frequently in the years before<br />
diagnosis than those without the<br />
disease. There has been debate as to<br />
whether this is a result of MS itself,<br />
or a prodromal phase of the disease.<br />
A team of researchers in Munich<br />
analysed data in an effort to address<br />
this question. Their findings were<br />
published in the journal Neurology,<br />
in the study, ‘Systematic Assessment<br />
of Medical Diagnoses Preceding the<br />
First Diagnosis of Multiple Sclerosis’.<br />
They reviewed medical data for<br />
10,262 people with MS in the five years<br />
prior to diagnosis, and compared it<br />
with other groups including Crohn’s<br />
disease and psoriasis which are also<br />
autoimmune.<br />
Relative to the other groups, MS<br />
patients had significantly higher<br />
frequencies of certain medical<br />
issues. Notably, most of the issues<br />
that were more frequent among<br />
MS patients “represent symptoms<br />
suggestive of demyelinating events<br />
or other neurologic diagnoses,” the<br />
researchers wrote.<br />
The patients appear to have been<br />
experiencing MS-like symptoms<br />
years before their diagnosis. Based<br />
on this, the researchers think<br />
patients are not experiencing a<br />
distinct prodromal disease phase,<br />
but instead are dealing with<br />
symptoms of unrecognised MS.<br />
These findings may have important<br />
implications for MS diagnosis and<br />
treatment, the team said.<br />
“The sooner MS is recognised, the<br />
better we can treat the disease. We<br />
now need to take a closer look at<br />
which early symptoms of MS might<br />
be overlooked. This could allow<br />
us to recognise the disease at an<br />
earlier stage and thus enable earlier<br />
treatment initiation,” said Christiane<br />
Gasperi, physician, researcher and<br />
co-author of the study.<br />
Deep brain stimulation may help<br />
with MS-associated tremors; Marta<br />
Figueiredo PhD; October 5, <strong>2021</strong><br />
A review study has found that deep<br />
brain stimulation (DBS) effectively<br />
reduces tremors in people with<br />
MS but may lead to worsening<br />
symptoms and speech problems.<br />
While these findings support<br />
the use of DBS for treating this<br />
common, disabling symptom,<br />
larger studies using standardised<br />
measures of tremors would help<br />
to assess the risk-benefit profile<br />
of DBS accurately in this patient<br />
population.<br />
The study, ‘Deep brain stimulation<br />
for multiple sclerosis tremor: A<br />
systematic review and metaanalysis’<br />
was published in the<br />
journal Multiple Sclerosis and<br />
Related Disorders.<br />
8
HERE WE PROVIDE SUMMARIES OF RESEARCH SOURCED FROM WEBSITES IN AUSTRALIA AND AROUND THE<br />
WORLD; WE HOPE IT’S OF INTEREST TO YOU.<br />
READ MORE AT <strong>MSWA</strong>.ORG.AU/RESEARCHUPDATE<br />
Tremors are one of the most<br />
common symptoms of MS,<br />
affecting 25% to 58% of patients,<br />
being severe in 3%–15% of cases.<br />
The arms, legs, head, trunk, and<br />
vocal cords are the most commonly<br />
affected. For many people with MS,<br />
tremors can be debilitating enough<br />
to severely impair quality of life and<br />
are challenging to treat.<br />
DBS is approved, and successful, for<br />
Parkinson’s disease and essential<br />
tremor, and has also been used<br />
for the treatment of severe MSassociated<br />
tremors when other<br />
treatments have failed. Electrodes<br />
are surgically implanted in the brain<br />
to stimulate the thalamus — an<br />
area involved in motor function —<br />
with electric impulses. The amount<br />
of stimulation is controlled by a<br />
pacemaker-like device placed<br />
under the skin, near the collarbone.<br />
A team of researchers in Iran<br />
systematically reviewed studies<br />
published up to March <strong>2021</strong> that<br />
investigated the effects of DBS on<br />
MS-related tremors. From a total of<br />
1,663 studies, 17 — covering 162 MS<br />
patients — were included in the<br />
meta-analysis.<br />
Results showed that the pooled rate<br />
of tremor reduction was 73% (range<br />
of 22%–100%) and that DBS led to<br />
a significant reduction in tremor<br />
scores, by a mean of -2.9 points.<br />
One study reported improvements<br />
in quality of life among patients<br />
showing tremor reductions<br />
following DBS.<br />
“The result of this systematic review<br />
and meta-analysis demonstrates<br />
that MS-related tremor improves<br />
after DBS,” the researchers wrote.<br />
But given the high variability<br />
between studies in terms of<br />
follow-up duration and tremor<br />
assessment, as well as the low<br />
number of included patients,<br />
larger studies using standardised<br />
measures are needed to better<br />
assess the intervention’s benefits in<br />
this patient population, they added.<br />
FROM BMC NEUROLOGY<br />
Read more at: biomedcentral.com<br />
Longitudinal observational study<br />
of boxing therapy in Parkinson’s<br />
disease, including adverse impacts<br />
of the COVID-19 lockdown; Craig<br />
Horbinski, et al.<br />
Parkinson’s Disease (PD) is a highly<br />
prevalent neurodegenerative<br />
disease whose incidence<br />
is increasing with an aging<br />
population. One of the most serious<br />
manifestations is gait instability,<br />
leading to falls and subsequent<br />
complications that can be<br />
debilitating, even fatal.<br />
Boxing therapy (BT) uses gait<br />
and balance exercises to improve<br />
ambulation in people with PD,<br />
though its efficacy has not yet been<br />
fully proven.<br />
In the current longitudinal<br />
observational study, 98 participants<br />
with idiopathic PD underwent<br />
twice-weekly BT sessions. Primary<br />
outcome was self-reported falls per<br />
month; secondary outcomes were<br />
quantitative and semi-quantitative<br />
gait and balance performance<br />
evaluations.<br />
Twice per week, each participant<br />
worked with their trainer on specific<br />
boxing-related exercises aimed<br />
at improving overall coordination,<br />
gait, and balance. The program<br />
consists of hundreds of exercises/<br />
skill sets, broken down into three<br />
main phases. At the beginning of<br />
each month, including before the<br />
very first session, each participant<br />
was asked to estimate how many<br />
falls they had experienced the prior<br />
month.<br />
The average number of self-reported<br />
falls per month per participant<br />
decreased by 87%, during BT.<br />
During the lockdown imposed by<br />
COVID-19, this increased per month.<br />
Females and those > 65 years old<br />
reported the greatest increase in<br />
falls during the lockdown period.<br />
Post-lockdown resumption of BT<br />
resulted in another decline in falls.<br />
Quantitative performance metrics,<br />
including standing from a seated<br />
position and standing on one leg,<br />
largely mirrored the pattern of falls<br />
pre-and post-lockdown; concluding<br />
that BT may be an effective option<br />
for many PD patients.<br />
9
RESEARCH<br />
FROM NEUROSCIENCE RESEARCH<br />
AUSTRALIA (NEURA)<br />
Read more at: neura.edu.au<br />
The physiology of improved<br />
functional movement with Wii<br />
therapy; Dr Penelope McNulty<br />
Successful rehabilitation after stroke<br />
is limited by many factors including<br />
trained personnel, equipment, time,<br />
and money.<br />
“One of the biggest impediments in<br />
rehabilitation is patient compliance<br />
and motivation. We have developed<br />
a novel rehabilitation strategy using<br />
the Nintendo Wii; it’s fun, cheap, and<br />
can be used in patients’ homes.”<br />
This intense but flexible program<br />
can be adapted to the individual<br />
patient’s needs and can be used<br />
for patients with good upper limb<br />
function and those with poor<br />
function.<br />
“Now that we know Wii therapy<br />
works, we need to understand how<br />
and why it works. This will allow<br />
us to further refine and develop<br />
Wii therapy so that more patients<br />
can benefit from post-stroke<br />
rehabilitation.”<br />
FROM STROKE ASSOCIATION UK<br />
Read more at stroke.org.uk<br />
Can automated stroke diagnosis<br />
help reduce its effects? University<br />
of Edinburgh, Dr Grant Mair.<br />
Stroke strikes every five minutes in<br />
the UK and it’s crucial that stroke<br />
patients are treated quickly and<br />
effectively to reduce the likelihood<br />
of death and severe disability.<br />
In very busy hospitals, there may<br />
be delays and scans can be hard<br />
to interpret even for the most<br />
experienced professionals. Artificial<br />
intelligence (AI) computer software<br />
can assist humans to interpret brain<br />
scans and they are increasingly<br />
available for use in healthcare.<br />
More research that is also<br />
independent of the companies<br />
producing the software is needed<br />
to ensure that they do increase the<br />
accuracy and speed of diagnosis,<br />
they are safe and good value for<br />
money.<br />
The researchers tested an AI<br />
software, called e-ASPECTS,<br />
developed by Brainomix Ltd Oxford<br />
UK to understand if it should be<br />
used for diagnosis of stroke in<br />
hospitals.<br />
The team looked at how well<br />
the software can identify and<br />
quantify damage to the brain<br />
caused by stroke compared to a<br />
human expert, as well as how well<br />
it identifies underlying causes of<br />
stroke symptoms eg, stroke caused<br />
by blood clot vs a bleed in the brain.<br />
They also looked at if certain clinical<br />
(eg, patient age, stroke severity)<br />
or imaging characteristics (eg,<br />
stroke type, position of patient<br />
in the scanner) have an effect on<br />
differences between the software<br />
and human diagnoses.<br />
The team will determine if using the<br />
software can save time in diagnosis<br />
of stroke compared to various<br />
types of clinicians involved in<br />
stroke care and using the software<br />
increases confidence of clinicians<br />
and influences their decisions in<br />
diagnosing stroke.<br />
The researchers collated over 4000<br />
patient brain scans from nine<br />
studies, making this the biggest<br />
ever analysis of this software. The<br />
final results for software accuracy<br />
will be published soon. Testing with<br />
professionals is ongoing.<br />
This research sets a precedent for<br />
independent testing of AI software<br />
in stroke, which can improve stroke<br />
care by ensuring the best software<br />
is used. The results of this research<br />
and similar studies will help NHS<br />
trusts and other organisations<br />
make informed decisions when<br />
purchasing AI software.<br />
FROM HUNTINGTON’S VICTORIA<br />
Read more at:<br />
huntingtonsvic.org.au/research<br />
Targeting the Huntington’s Disease<br />
Gut Microbiome; Yifat Glikmann-<br />
Johnston.<br />
Research Duration:<br />
January <strong>2021</strong> – December 2022<br />
Recruitment Dates:<br />
April <strong>2021</strong> – September 22<br />
Many people with Huntington’s<br />
disease (HD) lose weight<br />
unintentionally and experience<br />
gastrointestinal disturbances,<br />
which affect their quality of life.<br />
As people with HD struggle with<br />
symptoms that lack adequate<br />
treatments, there is a critical<br />
need to understand how nonpharmacological<br />
interventions such<br />
as lifestyle factors (eg, diet, exercise,<br />
sleep) can be used to enhance<br />
quality of life until appropriate<br />
pharmacological treatments are<br />
found.<br />
10
This research project is investigating<br />
the bacteria within the gut and the<br />
relationship between gut health<br />
and clinical indicators of HD such<br />
as mood, weight, and thinking and<br />
memory.<br />
“Our study is completely remote,<br />
meaning that participants can<br />
do the study from home. We use<br />
online questionnaires, cognitive<br />
tasks via mobile app and telehealth,<br />
and ask for a faecal sample to be<br />
sent by post.<br />
Results of this research will provide<br />
the knowledge we need about<br />
the HD gut to make lifestyle<br />
recommendations and inform<br />
other interventions that can help<br />
with gastrointestinal symptoms (eg,<br />
change in diet, taking supplements<br />
such as probiotics).”<br />
This research project is funded by<br />
the Huntington’s Disease Society of<br />
America HD Human Biology Project<br />
Fellowship awarded to Dr Yifat<br />
Glikmann-Johnston.<br />
FROM MND AUSTRALIA<br />
Read more at: mndaustralia.org.au<br />
Phase 2/3 of the Copper-ATSM<br />
clinical trial will soon commence<br />
at Macquarie University, Sydney<br />
and then at other sites across<br />
Australia.<br />
The first clinical trial of copper-ATSM<br />
as a potential treatment option<br />
for motor neurone disease (MND)<br />
started recruiting in November<br />
2016.<br />
Copper-ATSM therapy was developed<br />
in Australia. Research has shown<br />
copper-ATSM can protect motor<br />
neurones in the spinal cord, improve<br />
MND-like symptoms, and extend<br />
the lifespan of mice with a mutated<br />
form of SOD1. It is more effective in<br />
mutant SOD1 mice than riluzole (the<br />
only approved treatment for MND).<br />
Phase 1 of the study, conducted at<br />
two sites in Australia, identified a<br />
safe dosage of copper-ATSM.<br />
The phase 2/3 trial will commence<br />
initially at Macquarie University<br />
in Sydney and then at other sites<br />
across Australia. Anyone interested<br />
in taking part in the trial will need to<br />
contact their neurologist to discuss<br />
suitability and eligibility.<br />
Phase 1 of the study recruited<br />
participants who have been<br />
diagnosed with sporadic or familial<br />
amyotrophic lateral sclerosis.<br />
Research to date has been<br />
conducted on familial MND animal<br />
models. There is no animal model<br />
for sporadic MND. However, in 2015<br />
Peter Crouch and colleagues at The<br />
University of Melbourne and the<br />
Florey Institute found MND-affected<br />
tissues obtained from people who<br />
died because of sporadic MND had<br />
important similarities to mice that<br />
responded to copper-ATSM. This<br />
suggests that copper-ATSM may<br />
have activity in both sporadic and<br />
familial MND.<br />
A possible treatment resulting from<br />
these studies is many years away.<br />
Phase 1 determined a safe dose of<br />
copper-ATSM. Data from this trial<br />
guided researchers in setting up<br />
the next phase of the trial.<br />
The Phase 2 Cu-ATSM clinical trial<br />
will involve 80 participants and<br />
evaluate efficacy (whether the<br />
compound works as intended) and<br />
further evaluate safety. Patients<br />
involved in this phase of the trial will<br />
be randomly assigned Cu-ATSM or a<br />
placebo for 6x28 day cycles.<br />
Motor Neurone Disease Research<br />
Australia has invested more than<br />
$1.2 million to support three<br />
projects that aim to assist<br />
developing copper-ATSM as a<br />
potential therapeutic for MND.<br />
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11
COMMUNTY CUSTOMER ENGAGEMENT SUPPORT TEAM<br />
STILL INDEPENDENT<br />
AS NDIA SCRAPS<br />
CONTROVERSIAL PLAN<br />
GEOFF HUTCHINSON<br />
MANAGER CLIENT<br />
ENGAGEMENT<br />
In September 2020, when the then-Minister for the NDIS Stuart Robert announced that the<br />
government had accepted many of the Tune Review recommendations, most across the<br />
disability sector were pleased. After all, the Tune Review (an independent review of the NDIS<br />
Act) had made a bunch of sensible recommendations that would help build a Scheme that<br />
would work for everyone.<br />
However, buried deep in the<br />
announcement, was news that<br />
would dominate the conversations<br />
across the sector for months to<br />
come: that the NDIA planned<br />
to introduce Independent<br />
Assessments to all participants. The<br />
Minister announced Independent<br />
Assessments would be introduced<br />
for everyone applying for the NDIS<br />
from February <strong>2021</strong> and then<br />
gradually include every single<br />
participant when they have a plan<br />
review. We were assured that this<br />
wasn’t a cost-cutting measure and<br />
they would be ‘independent’.<br />
The true independence became<br />
clear in February when the NDIA<br />
chose the successful contractors<br />
to complete these Independent<br />
Assessments, just three days after<br />
submissions closed. Concern for the<br />
meaning of ‘independence’ became<br />
greater when the NDIA awarded a<br />
contract to an organisation headed<br />
up by former NDIA CEO Rob De<br />
Luca and several of his executive<br />
team, who left the NDIA just months<br />
before the announcement of the<br />
Independent Assessment concept.<br />
So, what was the response<br />
from the community?<br />
In short, massive.<br />
Participants, providers, the media,<br />
state governments and the wider<br />
community all spoke out in<br />
opposition to this plan. The pushback<br />
on this idea and importantly<br />
the way it was introduced was loud,<br />
impassioned, and effective. Catherine<br />
McAlpine, the CEO of Inclusion<br />
Australia, summed it up when she<br />
stated that “the immediate outcry<br />
occurred because the government<br />
broke its fundamental promise to<br />
people with disability, to engage<br />
as equal partners in decisions.<br />
And, at the same time, decided to<br />
fundamentally change the personcentred<br />
nature of the NDIS.” The NDIS<br />
Joint Standing Committee received<br />
more than 320 submissions on the<br />
issue from a range of individual<br />
advocacy organisations, academics<br />
with the vast majority highly critical<br />
of the proposed assessments.<br />
The people had spoken and<br />
eventually, the government listened.<br />
In early July and in the face of<br />
sustained opposition, the Federal<br />
Government agreed not to make any<br />
legislative changes to the NDIS and<br />
very nicely committed to consulting<br />
on any future amendments.<br />
The Independent Assessments<br />
were off the table. Victory for the<br />
People... for now.<br />
Because while Independent<br />
Assessments are ‘dead’, we know<br />
that this is not the end. Both the<br />
previous and current NDIS Ministers<br />
have continued the narrative<br />
around cost blowouts and the need<br />
to change the NDIS legislation.<br />
The government would have you<br />
believe there are too many people<br />
on the NDIS, plans are over-funded,<br />
and the Scheme is financially<br />
unsustainable. And while there may<br />
be some truth to that, this claim has<br />
not been backed up with sufficient<br />
evidence to sway public opinion.<br />
So, rejoice one and all because<br />
we, the people, have stopped<br />
independent assessors before<br />
they impact thousands. But while<br />
we savour victory, we should<br />
remain vigilant because the<br />
Department of Social Services<br />
website recently announced that,<br />
“Public consultations on draft<br />
amendments to legislation are<br />
expected to occur from late August<br />
ahead of introduction to Parliament<br />
in October <strong>2021</strong>.” The changes are<br />
back and it’s up to everyone to use<br />
our voices and ensure the NDIS<br />
continues to work for all of us.<br />
12
VALE DR GREG BROTHERSON<br />
It is with great sadness we say our final goodbye to former<br />
longstanding Board Director and <strong>Bulletin</strong> Editor Greg<br />
Brotherson. After more than a year of struggling with various<br />
health issues, he passed away on 7 August <strong>2021</strong>.<br />
Greg joined what was then the MS<br />
Society in 1979 after being diagnosed<br />
with MS. From the start he showed<br />
a willingness to put his skills and<br />
abilities to use helping others with<br />
MS. Shortly after, Greg became the<br />
Editor of the magazine, MS <strong>Bulletin</strong>,<br />
which over time evolved from<br />
a typed newsletter into a highly<br />
valued, quality, quarterly colour<br />
magazine. He remained Editor of<br />
<strong>Bulletin</strong> until 2019, only handing the<br />
role on when his health deteriorated<br />
and compromised him. As Editor, he<br />
was passionate and committed to<br />
providing people living with MS the<br />
latest information about multiple<br />
sclerosis in a very accessible and<br />
understandable way. He also used<br />
<strong>Bulletin</strong> to help Members connect<br />
with others, whether with <strong>MSWA</strong><br />
staff who could help them live their<br />
best lives, or with other people living<br />
with the condition who could share<br />
stories and experiences.<br />
Greg started his working life in<br />
the mailroom at Dalgety’s. He and<br />
Myrna, his devoted wife, married<br />
in 1961. He spent some time as a<br />
truck salesman for a while, then<br />
he undertook a flying course,<br />
graduated as a pilot, and went on to<br />
work for various airline businesses<br />
for a number of years. As a result, he<br />
was often known as ‘Biggles’.<br />
Greg was elected to the Board of<br />
<strong>MSWA</strong> in 1982 and continued to<br />
be re-elected for many years at the<br />
end of each of his terms of service.<br />
He was so well known to Members<br />
that they never thought twice when<br />
election time came around.<br />
Greg decided to undertake various<br />
studies at Murdoch University,<br />
and was granted his Doctor of<br />
Philosophy (PhD) in 2000. He then<br />
became a tutor in history.<br />
I met Greg on my very first visit to<br />
the Wilson Services Centre after<br />
being diagnosed with MS. His<br />
gentleness, wit and intelligence<br />
were a great comfort to me at what<br />
was a difficult time. He heard that I<br />
was a high school English teacher<br />
and encouraged me to begin<br />
writing articles for <strong>Bulletin</strong>.<br />
His encouragement gave me a new<br />
interest when other areas of my life<br />
were closing down.<br />
Greg has always been an inspiration<br />
to so many others, as he lived his life<br />
with gentleness and fortitude in the<br />
face of the continuing progression<br />
of his MS.<br />
Dr Greg Brotherson served <strong>MSWA</strong><br />
with loyalty, commitment, and great<br />
honour for over forty years. He will<br />
be fondly remembered as a hero of<br />
our organisation.<br />
I would particularly like to mention his<br />
wife Myrna’s constant support for him<br />
over the years. We all wish you well<br />
Myrna as you go through this tough<br />
time. I would also like to express my<br />
deepest condolences to Greg and<br />
Myrna’s sons, Kim and Jason.<br />
Vale Dr Brotherson.<br />
We will miss you.<br />
ROS HARMAN<br />
13
NURSING<br />
COVID-19 VACCINATION UPDATE<br />
As we all know, COVID-19 has significantly impacted all of us in one way or another. Thankfully<br />
WA has been less impacted than other states in Australia and indeed so many countries around<br />
the world. Closed borders and lockdowns have been particularly effective for WA and Australia<br />
more broadly but have come at significant cost to the economy and our ability to travel.<br />
The global push to get vaccinated<br />
is ongoing and has indeed ramped<br />
up significantly in the past 3 – 6<br />
months in Australia.<br />
Overwhelmingly there is evidence<br />
COVID vaccinations are safe,<br />
and indeed recommended, for<br />
most people with chronic health<br />
conditions; there are some medical<br />
exemptions that apply for those<br />
taking some specific medications.<br />
As always there is a lot of scary<br />
misinformation and untruths, so<br />
please seek out credible evidencebased<br />
information and advice.<br />
Two injections are required and,<br />
depending on the type of vaccine,<br />
the spacing varies from 4 – 12 weeks<br />
apart.<br />
/ Vaccinations are available through<br />
GPs, pharmacies, and state-run<br />
centres/hubs throughout the<br />
metropolitan and regional areas<br />
/ All Western Australians aged 12<br />
years and over are eligible for<br />
COVID-19 vaccination.<br />
/ All COVID-19 vaccines are free.<br />
/ The Australian Technical Advisory<br />
Group for Immunisations has<br />
recently released new advice<br />
regarding COVID-19 vaccination<br />
booster shots for those deemed<br />
‘severely immunocompromised’<br />
and on specific medications. Ask<br />
your medical team if a third dose<br />
is recommended for you.<br />
Increasingly, vaccination is<br />
becoming mandatory in certain<br />
settings, including residential aged<br />
care, the health system, and various<br />
private businesses like Qantas. Proof<br />
of vaccination will also become<br />
necessary for travel and some local<br />
events in an effort to protect us all<br />
from COVID-19.<br />
Always seek advice from your<br />
GP and / or neurologist, who know<br />
you well.<br />
Go to the Health Department<br />
websites in WA and the Federal site,<br />
as these are updated almost daily<br />
and provide vaccination advice and<br />
information and links for how to<br />
book your vaccination.<br />
healthywa.wa.gov.au<br />
health.gov.au<br />
SUE SHAPLAND RN, BN, MSCN<br />
“There is so much happening around us at present that we can forget to take care<br />
of ourselves. I had forgotten to do my own health checks and had cast aside those<br />
reminder letters from my GP thinking I would do them soon.<br />
I work in general practice and happened to speak to a general practitioner a few<br />
weeks ago who said that there were a lot of patients coming to see her who had put<br />
off their usual checks, and unfortunately the results coming back were not great.<br />
If only they had had them done when they were due, she said.<br />
This really hit me! Yes, life is super busy and we CAN overlook our health and wellbeing. I went home<br />
and booked those belated tests in. All is well – thank goodness – but it is a keen reminder to keep looking<br />
after our health even in these strange times of living within a pandemic.<br />
Please keep up to date with those health checks so that you can continue to be a force in the world!”<br />
TRACEY HOCKEY, <strong>MSWA</strong> CLIENT & EDITORIAL CONTRIBUTOR<br />
14
NURSING<br />
ARE YOU PRACTICING<br />
GOOD HEALTH MONITORING?<br />
Whether you have a chronic illness or not, there are recommendations to regularly monitor your<br />
general health and wellbeing.<br />
The Victorian Government’s Better<br />
Health initiative (betterhealth.<br />
vic.gov.au/healthyliving/healthchecks)<br />
is just one great resource.<br />
Regular health checks can prevent<br />
many diseases and catch others<br />
before it's too late to change their<br />
course. Some health checks and<br />
screening tests can help prevent<br />
serious illness such as cancer.<br />
Regular self-checks are<br />
recommended (eg skin checks,<br />
breast self-examination for women<br />
and testicular checks for men)<br />
along with checks of your eyesight,<br />
teeth, gums, and those ordered or<br />
performed by your GP (eg blood<br />
tests and screening).<br />
Speak to your GP, who will provide<br />
tailored advice about what tests you<br />
may need and how often.<br />
Recommended screening:<br />
/ Regular monitoring of your<br />
blood pressure, weight, and<br />
cholesterol; frequency depends<br />
on your age and risk of heart<br />
disease or stroke.<br />
/ Diabetes screening; depending<br />
on your risk of Diabetes Type<br />
2. The blood tests may require<br />
fasting.<br />
/ Bowel cancer screening; The<br />
National Bowel Cancer Screening<br />
Program provides a home<br />
sample kit and recommends<br />
people aged 50 to 74 years have<br />
a test once every two years.<br />
Up to 90% of bowel cancers<br />
can be successfully treated if<br />
detected early.<br />
/ Bone density test (DEXA) to<br />
determine the health of your<br />
bones; Osteoporosis is a disease<br />
that causes bones to become<br />
brittle. Risk factors include a thin<br />
build, early menopause, aged<br />
over 70 years, and long-term use<br />
of cortisone medication.<br />
Some gender-specific screenings<br />
you might like to think about<br />
include:<br />
For women:<br />
/ Cervical screening test: this is<br />
important and can pick up signs<br />
of irregularities that could lead<br />
to cervical cancer if not treated.<br />
Cervical cancer is one of the most<br />
preventable cancers. Frequency<br />
of tests depend on your age and<br />
any family history.<br />
/ Mammogram: this is recommended<br />
every two years. If you have a family<br />
history it will be more frequent.<br />
For men:<br />
/ Prostate cancer screening:<br />
population-based screening is<br />
not recommended, so discuss<br />
this with your GP. If you’re aged<br />
50-70, a blood test (PSA) may be<br />
deemed appropriate.<br />
/ ECG: a non-invasive and painless<br />
medical test that detects cardiac<br />
(heart) abnormalities by measuring<br />
the electrical activity generated by<br />
the heart as it contracts.<br />
For all:<br />
/ Sexual health: testing for sexually<br />
transmissible infections and<br />
erectile dysfunction or other<br />
sexual problems can be discussed<br />
with your GP.<br />
In addition, monitoring your<br />
mental health and seeking advice<br />
and support is also recommended.<br />
We don’t think twice about getting<br />
our vehicles regularly serviced and<br />
checked when things aren’t right;<br />
self-care is so important and you’re<br />
worth it!<br />
SUE SHAPLAND BN<br />
15
PAIN & PAIN MANAGEMENT SERIES<br />
Welcome to the second instalment in our series of articles on pain and pain management.<br />
Below, <strong>MSWA</strong> Counsellor Lisa Papas and Neurological Liaison Nurse Bronwyn Innes, who has a speciality<br />
background in pain management, give an overview of strategies for chronic pain management.<br />
Future editions will explore some of these strategies in greater detail.<br />
CHRONIC PAIN MANAGEMENT STRATEGIES<br />
In scientific literature there is no definitive cure for most chronic pain conditions. The aim<br />
of treatment is to manage pain so that physical and emotional functioning is restored and<br />
overall quality of life improved.<br />
While medications such as codeine<br />
or other opioids are sometimes<br />
prescribed for chronic pain, research<br />
has shown they are not effective in<br />
the long term.<br />
Non-pharmacological ways to<br />
manage your pain include:<br />
1. Psychological approaches such as:<br />
/ Cognitive Behaviour Therapy<br />
(CBT) or other forms of<br />
psychotherapy through a<br />
qualified therapist can help to<br />
solidify techniques for pain relief.<br />
/ Daily relaxation techniques<br />
- Guided imagery meditations can<br />
help shift attention from pain.<br />
- Use deep breathing techniques<br />
that provide relief, focus and<br />
distraction from pain.<br />
- Music as relaxation: sound and<br />
rhythm have proven benefits for<br />
soothing and distracting when<br />
in pain.<br />
/ Practicing Mindfulness<br />
- Meditation.<br />
- Focused breathing.<br />
- Acceptance as a technique for<br />
coming to terms with pain.<br />
/ Learning desensitisation.<br />
/ Using distraction.<br />
/ Finding support. Seek out<br />
qualified psychological therapists<br />
to work with you through these<br />
various modalities.<br />
2. Physical therapies such as:<br />
/ Daily stretching and walking.<br />
/ Pacing activities throughout the<br />
day.<br />
/ Gentle exercise.<br />
/ Hydrotherapy.<br />
/ TENS (Transcutaneous Electrical<br />
Nerve Stimulator).<br />
/ Superficial heat and cold.<br />
3. Complementary and alternative<br />
therapies such as acupuncture,<br />
massage and other supplements<br />
can also provide relief.<br />
4. Eating a healthy diet and<br />
improving sleep also contribute<br />
to wellbeing and overall quality<br />
of life.<br />
Evidence shows that people who<br />
are actively involved in managing<br />
their chronic pain on a daily basis<br />
have less disability than those who<br />
rely on passive therapies such as<br />
medication or surgery.<br />
Chronic pain is a complex experience<br />
which is influenced by physical,<br />
psychological and social factors. As<br />
such, the best way to manage it is<br />
to address all the factors affecting<br />
your pain. It is important to try to<br />
keep a positive attitude until you<br />
find a plan that works for you.<br />
In our next article, we will expand<br />
on the psychological approaches to<br />
pain management.<br />
LISA PAPAS<br />
<strong>MSWA</strong> COUNSELLOR<br />
BRONWYN INNES<br />
<strong>MSWA</strong> NEUROLOGICAL<br />
LIAISON NURSE<br />
16
COUNSELLING<br />
CONNECTING<br />
WITH NATURE<br />
It was a long, wet winter and many of us are feeling the effects of a lack of sunlight and being<br />
‘stuck inside’. The effects of seasonal affective disorder (SAD) have been well documented,<br />
where the lack of getting outside and the impact of low vitamin D impacts our mental and<br />
physical health.<br />
I have written before about the<br />
benefits of animals on your mental<br />
and physical health. I am now<br />
inviting you to expand this, to<br />
incorporate the natural world. The<br />
medical profession is beginning<br />
to recognise the benefits of<br />
connecting with nature. Treatment<br />
rooms and waiting rooms are<br />
displaying images of nature on<br />
the walls, incorporating sounds of<br />
nature (such as water and birds)<br />
and going as far as providing<br />
subtle scents of nature, which<br />
has increased positive outcomes<br />
for patients.<br />
Humans have an innate appreciation<br />
of close contact with nature, which<br />
is believed to have derived from<br />
the living conditions under which<br />
humans evolved. In other words, the<br />
need to connect with nature is in<br />
our DNA. The value and importance<br />
of our connection to nature is<br />
nothing new as historically many<br />
cultures have included aspects of<br />
nature and the use of medicinal<br />
plants into their wellbeing and<br />
health practices. However, there is<br />
now clear scientifically researched<br />
evidence for the beneficial effects<br />
of exposure to nature and green<br />
environments and the resulting<br />
feelings of wellbeing this can<br />
produce.<br />
There are many ways to get<br />
outside – gardening is a popular<br />
pastime for many. In fact, scientists<br />
have suggested that a type of<br />
friendly bacteria found in soil may<br />
affect the brain in a similar way<br />
to antidepressants! I would not<br />
suggest eating dirt, however getting<br />
your hands and feet into the soil is a<br />
great way to increase exposure and<br />
activate those chemicals in your<br />
brain that improve your mental<br />
and physical health. Alternatively,<br />
going for a walk or ride in the bush<br />
or park, going to the beach, or even<br />
a picnic outdoors are a few of the<br />
many ways you can connect with<br />
the natural world.<br />
If getting physical outside is beyond<br />
your capabilities maybe try sitting<br />
outside with a book or just sitting<br />
mindfully, while engaging fully<br />
with the sights, sounds, smells, and<br />
textures that surround you.<br />
So, venture forth into the<br />
‘great outdoors’ in whatever<br />
way you can. Your physical<br />
and mental health will thank<br />
you for it.<br />
For those of you who would like<br />
to investigate this subject further<br />
there is a document online called<br />
‘Beyond Blue to Green’ which is<br />
an Australian paper developed<br />
by Beyond Blue and the Deakin<br />
University.<br />
KAREN BROWN<br />
<strong>MSWA</strong> COUNSELLOR<br />
17
PHYSIOTHERAPY<br />
LOOKING TO NASA FOR<br />
ASSESSING BALANCE PROBLEMS<br />
Is your balance a bit ‘off’? Have you had a fall or two? Or are you worried about falling?<br />
Balance is a complicated thing,<br />
according to <strong>MSWA</strong> Senior<br />
Physiotherapist Ben Matthews.<br />
“The brain controls your balance<br />
by receiving sensory information<br />
from your eyes, muscles and<br />
joints, and vestibular system<br />
(structures located within the ears),<br />
interpreting this information, and<br />
then delivering an appropriate<br />
muscular response,” says Ben.<br />
“If this information is disrupted, say<br />
as a result a neurological condition,<br />
you may become more susceptible<br />
to falls.”<br />
<strong>MSWA</strong> owns one of a very small<br />
number of Balance Master devices<br />
in Western Australia. Development<br />
of this device was originally funded<br />
by NASA to test the balance of<br />
astronauts after a space flight.<br />
Now located at <strong>MSWA</strong>’s Butler<br />
Services Centre, the Balance Master<br />
is a high-tech system used by the<br />
Physiotherapy team to isolate<br />
a person’s response to different<br />
sensory input scenarios.<br />
The person stands or sits in the<br />
Balance Master cubicle supported<br />
by a harness while various scenarios<br />
are tested. For some of the tests<br />
the subject’s eyes remain open; for<br />
others they are closed. The floor of<br />
the cubicle and visual surround can<br />
be set to be stable or to sway.<br />
“By testing under these variable<br />
conditions and isolating one<br />
sensory input from others, we<br />
can determine which factors are<br />
compromising a subject’s balance,”<br />
says Ben.<br />
“It’s then possible to design a<br />
physical therapy program, informed<br />
by the evidence gained from the<br />
Balance Master assessment, to<br />
address these issues.”<br />
An initial Balance Master test<br />
provides a baseline of results.<br />
Further assessments can be<br />
conducted to determine if the<br />
prescribed therapy is effective.<br />
To find out more about how<br />
Balance Master can improve<br />
your wellbeing and function<br />
call the <strong>MSWA</strong> Physiotherapy<br />
team on 9365 4888.<br />
“This year, I did a full assessment session on the Balance Master at <strong>MSWA</strong><br />
Butler. It took about 45 minutes. I found that the machine was easy to<br />
stand in and the digital display screen was adequate and easy to follow the<br />
prompts. It was very interesting to watch my movements on the screen. The<br />
assessment mode was quite jolty and I had to have an assistant holding me<br />
from behind. But the results of the assessment mean my physio can now<br />
tailor my training to improve my balance and therefore improve my mobility.”<br />
NICOLETTE MURPHY, <strong>MSWA</strong> CLIENT & EDITORIAL CONTRIBUTOR<br />
18
<strong>MSWA</strong> CLIENT<br />
TEEING UP FOR A NEW LIFE<br />
IN ALBANY<br />
“I’d raced motocross for 11 years, had a state title for BMX, I played off a 4 handicap at golf. I<br />
was very sporty,” recalls Kim Graham. “So to suddenly discover I had this thing called MS was<br />
a kick in the guts.”<br />
Kim lives in the small wheatbelt<br />
town of Kondinin and has been<br />
living with multiple sclerosis since<br />
2001. He was initially diagnosed<br />
when pins and needles started to<br />
spread through his legs. These days,<br />
he’s lost use of his legs completely<br />
and relies on a wheelchair to get<br />
around. Kim is keen to point out<br />
that – being a devoted Fremantle<br />
Dockers fan – his wheelchair<br />
is purple.<br />
A country boy through-andthrough,<br />
Kim spent most of his days<br />
working on farms. He now lives in<br />
the local retirement village, with a<br />
care worker who comes in to help<br />
him to dress, shower and do chores.<br />
“I’m 6ft 4in, so when your legs don’t<br />
work they just get in the way.”<br />
“I’ve always been in the bush,”<br />
explains Kim. “When I was a young<br />
bloke, I came to Perth for four<br />
months to work at Cottesloe Golf<br />
Course. I realised I hated the city –<br />
I’d blow my paycheck before the<br />
weekend was over. There were too<br />
many women and too many pubs!”<br />
Now in his fifties, Kim’s trademark<br />
good humour and charisma are still<br />
going strong. He is a popular and<br />
regular visitor to <strong>MSWA</strong>’s Margaret<br />
Doody Respite House in City Beach.<br />
“I like talking to the other residents.<br />
The first time I came here I was<br />
booked for three weeks, but they<br />
kept me here for six because I’m<br />
good value!<br />
“And the people here are really nice<br />
and helpful. The chefs are great –<br />
Annette cooks the most amazing<br />
food! When I’m at home, food isn’t<br />
much of a priority for me.”<br />
On his last visit to Margaret Doody<br />
House, <strong>MSWA</strong> staff arranged for<br />
him to try the ParaGolfer chair at<br />
Wembley Golf Course. Kim explains<br />
how it felt to swing a golf stick for<br />
the first time in 20 years. “It felt<br />
wicked,” he says with a grin. “I had<br />
tears in my eyes.<br />
“I’ve still got my old golf sticks in the<br />
living room. I clean them regularly,<br />
and I’ll look at them and say ‘one<br />
day I’ll get to swing you again’.”<br />
However, Kim is realistic about the<br />
future. “The MS is getting worse.<br />
It’s harder and harder to live by<br />
myself. I find it harder every day to<br />
do things. It’s gonna happen,” he<br />
says, speaking about the possibility<br />
of supported accommodation.<br />
Kim’s sister Nicole lives on a farm<br />
near Bluff Knoll, so when she heard<br />
that <strong>MSWA</strong> was building a new<br />
$7m residential facility in Albany<br />
for people living with neurological<br />
conditions, she began making<br />
enquiries about getting Kim on<br />
the waitlist for one of the 10 highsupport<br />
accommodation units that<br />
will be available in 2022.<br />
Pending NDIS approval, Kim could<br />
soon move into his own unit, with<br />
access to onsite 24/7 support, as well<br />
being next door to <strong>MSWA</strong>’s newest<br />
state-of-the-art Services Centre.<br />
The thought of such easy access to<br />
physiotherapy, the Outreach group,<br />
nursing and occupational therapy<br />
is comforting to Kim. “You don’t<br />
get nothing like that in the bush,”<br />
he explains. “There’s no one in<br />
Kondinin who can do physiotherapy<br />
for my condition. And at the<br />
Kondinin Hospital, all the handrails<br />
are too low because they don’t get<br />
many 6ft 4in blokes in wheelchairs<br />
coming in!”<br />
The milder Albany summers<br />
and being closer to his sister<br />
and her family are also a<br />
draw for him.<br />
Whilst Kim is saddened by the<br />
thought of leaving his closeknit<br />
community, he is grateful<br />
that a move to high-support<br />
accommodation in Albany might<br />
be possible. He winks as he says,<br />
“Tell ‘em to paint one room purple<br />
and I’ll have that one!”<br />
19
OCCUPATIONAL THERAPY<br />
WHAT IS ASSISTIVE TECHNOLOGY<br />
AND HOW CAN IT HELP YOU?<br />
Ever since the introduction to the NDIS, the term ‘assistive technology’ has become more<br />
widely known. The World Health Organisation describes assistive technology as an<br />
umbrella term covering the systems and services related to the delivery of assistive products<br />
and services. On the other hand, assistive products maintain or improve an individual’s<br />
functioning and independence, thereby promoting their wellbeing.<br />
The aim of the assistive technology<br />
and its products is to help people<br />
with disabilities bridge the gap<br />
between their disability and the<br />
ability to be able to pursue their<br />
goals. There are many types of<br />
assistive technology and it can be<br />
daunting to know which would suit<br />
your needs. It is therefore important<br />
to involve a health professional who<br />
understands the disability, your<br />
environment, and the goals that<br />
you would like to achieve. It is also<br />
important to note that the device is<br />
not meant to be an end in itself but<br />
rather a tool as part of an ongoing<br />
process to achieve your goals.<br />
WHO CAN BENEFIT FROM ASSISTIVE<br />
DEVICES OR TECHNOLOGY?<br />
This may be surprising but the<br />
majority of the population can<br />
and is benefiting from assistive<br />
technology (AT) in different areas of<br />
life. It not only benefits the users of<br />
AT but also the people around them<br />
such as carers, teachers, employers<br />
and other people in the community.<br />
For example, a ramp from the<br />
parking area into the shopping<br />
centre will not only benefit<br />
wheelchair users but also the<br />
general population such as mums<br />
with prams. Or software that<br />
enlarges print on phones and<br />
computers will not only benefit<br />
people with a vision impairment,<br />
but will also benefit those who are<br />
ageing.<br />
Appropriate and relevant access<br />
to these devices and the adoption<br />
and application of AT can provide<br />
individuals with opportunities to<br />
participate in community life which<br />
will in turn benefit the rest of the<br />
community.<br />
20
TYPES OF ASSISTIVE TECHNOLOGY<br />
Assistive technology can range in types and categories and can be disability-specific or mainstream. In recent years,<br />
there has also been more of a shift into making mainstream products such as tablets and computers more accessible<br />
to enable access for a person with a disability.<br />
The following are some categories and examples of assistive devices. Please note that this is not an exhaustive list<br />
and development in assistive devices are constantly improving:<br />
Category<br />
Mobility aids<br />
Transfer equipment<br />
Seating and positioning<br />
Temperature control<br />
Computer technology<br />
Physical modifications<br />
Adaptive devices for<br />
daily living<br />
Recreation<br />
Communication<br />
Examples<br />
Wheelchairs, scooters, walkers, canes, crutches, prosthetic devices, orthotic devices,<br />
guide dogs or assistance animals<br />
Hoists, transfer benches, vehicle transfer aids<br />
Recliners, adapted seating, cushions<br />
Air conditioners, cooling devices such as pillow and mattress protectors, cooling vests<br />
Computer software and hardware such as screen readers, screen enlargement apps<br />
and software, in-built accessibility programs in mainstream devices<br />
Modification for the built environment of the home or workplace including<br />
installation of grab rails, ramps, increasing doorways, circulation spaces. This can<br />
also include modifications of vehicles to enable safe transfers or driving techniques.<br />
Adaptive switches and utensils, specialised handles and grips, dressing aids,<br />
personal alarms, adapted personal hygiene aids<br />
Devices that enable participation in recreational and sporting activities include<br />
adaptive controls for video games, cuffs for grasping paddles or racquets etc.<br />
Devices that enable communication for people with speech and/or hearing difficulties.<br />
Examples include communication boards, text to voice software and specialised apps.<br />
MATCHING YOU TO THE RIGHT ASSISTIVE TECHNOLOGY<br />
Matching the person to the right AT for the right<br />
task can be a complex process that involves careful<br />
consideration of the person and their family members,<br />
the environment, the technology and the task involved.<br />
It involves technical knowledge of equipment and its<br />
interactions with the person and environment and a<br />
consultation process with the individual to come up with<br />
a product that would fit best to the individual’s needs.<br />
Before getting any equipment, it might be useful to<br />
consider these questions:<br />
/ What is my goal task to complete?<br />
/ What barriers are there that prevent me from<br />
achieving this goal?<br />
/ Who can assist me with selecting the right AT?<br />
/ Where can I find what AT is available?<br />
/ How will I determine which brand and features are<br />
the best for my needs?<br />
/ How will the AT be paid for?<br />
/ Can I trial the equipment?<br />
/ What kind of training do I need to use the AT?<br />
/ Who should I contact if I have follow up questions or if<br />
the equipment breaks down?<br />
WHERE TO SEEK HELP<br />
The <strong>MSWA</strong> Allied Health team comprises Occupational<br />
Therapists, Physiotherapists, Speech Pathologists and<br />
Nurses who can assist with assessing your needs and<br />
goals and sourcing the right fit for you in terms of your<br />
assistive technology needs.<br />
Your Support Coordinator or <strong>MSWA</strong> Client Liaison<br />
Coordinator can also assist with the funding from your<br />
NDIS plan if appropriate.<br />
You can also find out more information from Disability<br />
Gateway – a government portal for people with<br />
disabilities to source and connect with information and<br />
services that is relevant to their needs. It has a specific<br />
Assistive Technology page that can link you to more<br />
information and services depending on your needs and<br />
criteria: disabilitygateway.gov.au/aids-equipment<br />
CRYSTAL CHAN<br />
<strong>MSWA</strong> OCCUPATIONAL THERAPY MANAGER<br />
21
Farewell<br />
Marcus!<br />
In October, we said farewell to our CEO Marcus Stafford<br />
after nearly two decades of service to <strong>MSWA</strong>.<br />
Marcus, from all of us at <strong>MSWA</strong>, thank you.<br />
22
23
BRAND, MARKETING & SALES<br />
COMMUNITY<br />
FUNDRAISERS IN FOCUS<br />
<strong>MSWA</strong> Client Dymathy<br />
Hollands and family.<br />
Boots, Bubbles and BBQs, what do they have in common you might ask? <strong>MSWA</strong> Community<br />
Fundraisers, they come from all sorts of avenues!<br />
COCKBURN LAKES FOOTBALL CLUB<br />
FUNDRAISER<br />
Boots were donned, as the<br />
Cockburn Lakes Football Club<br />
took to the field for their Round 15<br />
Blockbuster against Nollamara on<br />
Saturday, 24 July.<br />
With the cause close to the heart<br />
of the team, they were joined by<br />
<strong>MSWA</strong> Client Dymathy Hollands,<br />
who was diagnosed with MS 15 years<br />
ago, and her family who helped to<br />
spur the team on to victory.<br />
With a triumphant win by the<br />
team on the day, funds from the<br />
sale of match day jerseys, raffles<br />
and auction, and donations from<br />
supporters of Glen Hollands from<br />
Red Sands Suppliers, the fundraiser<br />
raised a phenomenal $15,000!<br />
Club President, Colin van Raalte<br />
said, "The Cockburn Football Club<br />
holds an annual charity game for<br />
community groups, and with <strong>MSWA</strong><br />
close to our hearts it was certainly<br />
one of the biggest fundraisers we<br />
have held. We hope that the money<br />
raised can help <strong>MSWA</strong> provide<br />
much needed support and we at<br />
the CLFC wish <strong>MSWA</strong> the very best<br />
in the future."<br />
BUBBLES & BLOWDRYS<br />
Bubbles were flowing on Saturday,<br />
2 October as Shenae Wilson and<br />
the team at Shenae Wilson Hair in<br />
Ocean Reef were blow-drying up a<br />
storm in the name of raising funds<br />
for <strong>MSWA</strong>.<br />
Clients were treated to a grazing<br />
board, cupcakes, raffle and other<br />
treats, oh and don’t forget a glass<br />
of bubbly or two as they were<br />
pampered by the team.<br />
Shenae has a close friend with<br />
MS and wanted to help make a<br />
difference. She and her team raised<br />
over $1,100 from the day!<br />
COFFEY IS COOKING, AGAIN!<br />
<strong>MSWA</strong> Client Rhys Coffey was<br />
diagnosed with Secondary<br />
Relapsing Progressive MS in<br />
November 2019, after many<br />
investigations into the symptoms<br />
he was experiencing.<br />
A 10-year FIFO veteran from the<br />
Pilbara, Rhys put his symptoms<br />
down to the changing conditions<br />
from life in Perth and in the Pilbara,<br />
then he went from the fly-in fly-out<br />
lifestyle to being a stay-at-home<br />
dad overnight. After diagnosis, Rhys<br />
found his life changed in so many<br />
ways, physically and mentally.<br />
24
On Sunday, 3 October, Wells Park<br />
in Rockingham was abuzz as over<br />
50 family and friends of Rhys’ came<br />
together for a barbecue he had<br />
organised to raise funds for <strong>MSWA</strong>,<br />
as his way of giving back to those<br />
who have helped him.<br />
Guests were treated to a delicious<br />
feast, with a sausage sizzle, pulled<br />
beef and coleslaw rolls. Combined<br />
with a raffle, an amazing amount of<br />
$1,200 was raised.<br />
Rhys is looking forward to<br />
continuing to raise awareness for<br />
<strong>MSWA</strong> and the various conditions it<br />
supports. He hopes that his cooking<br />
can help get the message out there!<br />
Cooking has always been<br />
something that Rhys has enjoyed<br />
but it has now become a passion.<br />
“If you’re not cooking, no one is<br />
looking,” he explains, something<br />
that has become his slogan.<br />
Rhys has support from PGC<br />
Resources, Cavanagh Constructions,<br />
Mike McKenzie Mortgage Brokers,<br />
RibRack BBQ, Layll Building<br />
Solutions and other barbecue<br />
enthusiasts who are following him<br />
on Instagram.<br />
<strong>MSWA</strong> Client Rhys Coffey.<br />
“My favourite barbecue/Weber<br />
recipe is pulled lamb, which is really<br />
easy. I rub the lamb with RibRack<br />
sheep rub and put in the Weber on<br />
indirect heat at 2250F for four hours<br />
or until the internal temp reaches<br />
1650F, then I wrap in foil for another<br />
four hours or until the temp reaches<br />
2030F. Then I let it rest in an Esky for<br />
up to one hour and then – enjoy!”<br />
TRISH WATSON<br />
COMMUNITY EVENTS &<br />
FUNDRAISING COORDINATOR<br />
BLOOMING DISORDERED EXCHANGE<br />
“Blooming Disordered Exchange is a response to my own<br />
understanding and response to my diagnosis of multiple<br />
sclerosis. Through this piece I aim to create awareness of the<br />
chronic illness to an audience who wouldn’t necessarily have<br />
a connection to the degenerative autoimmune disease.<br />
As MS does not discriminate between male and female,<br />
this genderless clay bust provides the platform for intricately<br />
woven neurons formed from junk mail roses, salvaged cables<br />
and beads. Just as myelin sheath damage exposes nerves in<br />
those with MS and interferes with the exchange of messages<br />
between the brain and spinal cord, several cables in the<br />
sculpture have exposed copper wire due to damaged plastic<br />
insulation coating.”<br />
<strong>MSWA</strong> CLIENT, RACHAEL LEMON<br />
25
VOLUNTEERING, CAMPS & RECREATION<br />
VOLUNTEERS AND CAMPS UPDATE<br />
NEW MANDATORY REQUIREMENTS<br />
FOR VOLUNTEERS<br />
Over the past few months, I have<br />
been working closely with our<br />
volunteers to provide them with<br />
information regarding the NDIS<br />
and its mandatory requirements for<br />
anyone working closely with NDIS<br />
Clients. Many of our volunteers have<br />
been with us for over five years<br />
and although their roles have not<br />
changed, these new requirements<br />
have resulted in additional training<br />
and security checks.<br />
All staff and volunteers working<br />
with Clients must now complete the<br />
mandatory NDIS Worker Screening<br />
Check and the NDIS Worker<br />
Orientation Module. The online<br />
Module, which takes about 90<br />
minutes to complete, ensures that<br />
we all have a sound understanding<br />
of the NDIS principles and the rights<br />
of the Clients we work with.<br />
The NDIS Worker Screening Check<br />
replaces the police clearance that<br />
has previously been required.<br />
Identification documents are<br />
verified at the Department of<br />
Transport for document verification<br />
before the NDIS can begin its<br />
screening process, and it is then<br />
valid for five years.<br />
Existing volunteers need to apply<br />
for their NDIS Screening Check, but<br />
have a bit more time, depending on<br />
the currency of their police clearance.<br />
To help with the process, we are<br />
providing access to a computer<br />
or laptop to allow our volunteers<br />
to start their NDIS Screening<br />
application and work through the<br />
NDIS Online Orientation Module,<br />
should they need it.<br />
So, if you have not done this yet, or<br />
if you have problems logging on,<br />
please speak with your supervisor<br />
or you can call me direct.<br />
Is the effort worth it? Yes. Our<br />
volunteers are an important asset<br />
to the <strong>MSWA</strong> community. They<br />
complement the work of our staff,<br />
supporting them where there is<br />
a need. And, after meeting with<br />
several of our volunteers, I can also<br />
see what volunteering really means<br />
to them; it creates a great sense of<br />
community and an opportunity to<br />
give back.<br />
To build on our existing volunteer<br />
program, a survey was sent out to<br />
all Client Services and Residential<br />
Options-based volunteers to help<br />
us determine how they feel about<br />
their roles, training, and the level of<br />
support they receive from us. The<br />
results are being analysed as we<br />
speak, and we hope to share them<br />
with you in time.<br />
I am also pleased to say that the<br />
<strong>MSWA</strong> Volunteers brochure has<br />
been refreshed and will soon be<br />
distributed across WA volunteer<br />
centres. We have a number of<br />
positions to fill, and this brochure<br />
will help to extend our reach to a<br />
wider audience.<br />
CAMPS<br />
We have, once again, applied to<br />
Lotterywest for support with our<br />
camp program. However, due to<br />
them redirecting their funding<br />
during the peak of the COVID-19<br />
pandemic and the restrictions we all<br />
faced during and after lockdowns,<br />
our program has been impacted<br />
temporarily.<br />
Fingers crossed, camps will return<br />
in 2022. Tentative bookings have<br />
been made for the Carers Camps<br />
at a quiet retreat in Safety Bay in<br />
March. I am sure by then there will<br />
be much joy to be able to get away<br />
again. Dates will be posted at our<br />
Outreach Centres, and in <strong>Bulletin</strong>,<br />
and previous attendees will be<br />
contacted with more information.<br />
More good news. <strong>MSWA</strong> Readathon<br />
funding has been made available<br />
for the Family Camp in October this<br />
year. I look forward to my first-ever<br />
camp, meeting the families and<br />
giving their children a fun-filled<br />
experience, flying fox and all!<br />
For more information on volunteering<br />
and camps, call me, Mala<br />
Padmanathan on 6454 3184 or email<br />
mala.padmanathan@mswa.org.au<br />
MALA PADMANATHAN<br />
COORDINATOR CAMPS<br />
& VOLUNTEERS<br />
26
PHYSIOTHERAPY<br />
Q&A WITH BOB MASEK,<br />
CHAIR PING INVENTOR<br />
Have you witnessed a game of ‘Chair Ping’ taking place in an Outreach Centre near you?<br />
The modified equipment is the invention of <strong>MSWA</strong> Client Bob Masek and his wife Maria.<br />
We asked Bob all about this adapted form of table tennis.<br />
How did the idea for Chair Ping<br />
come about?<br />
My home visiting physiotherapist<br />
James Beckett brought with him<br />
a badminton set. The idea of how<br />
to practice eye-hand coordination<br />
was good, but the unpredictable<br />
wind in the backyard toyed with<br />
the badminton ball like a cat with a<br />
mouse. James suggested that ping<br />
pong might be a better idea.<br />
I bought a ping pong table, but<br />
it turned out that the table was<br />
much too big. A player sitting on a<br />
wheelchair in one spot is unable to<br />
return a ball that is placed out of his<br />
bat reach.<br />
I had parallel bars stored in the<br />
shed, and a melamine board laying<br />
on the floor in the corner – it was<br />
the perfect dimension, measuring<br />
1200x2400mm. It was love at first<br />
sight. I married the bars with the<br />
melamine board and CHAIR PING<br />
was born.<br />
I solved the table tennis disadvantage<br />
by shortening and narrowing the<br />
Chair Ping table by 34.00cm and<br />
32.50cm respectively.<br />
For a better measure, I also extended<br />
the length of the standard butterfly<br />
bat by 16cm.<br />
Scotty my social worker lent his<br />
woodworking knowledge, and my<br />
wife of 46 years and full-time carer<br />
Maria made three chair ping tables<br />
from scratch to finish by herself.<br />
They are now installed in three<br />
different <strong>MSWA</strong> Outreach Centres.<br />
Can you explain the rules in a<br />
nutshell?<br />
The rules of Chair Ping are exactly<br />
the same as for table tennis. The<br />
only difference is that the player<br />
does not move around the table, but<br />
plays while sitting on a wheelchair<br />
or chair.<br />
Getting up from the chair during<br />
the game in an attempt to return<br />
the ball to the opponent is penalised<br />
by losing one point.<br />
Is there anything else you’d like to<br />
tell us?<br />
The game of Chair Ping is a secret<br />
weapon that has the miraculous<br />
ability to cultivate honesty, respect,<br />
a sense of fair play, and create in<br />
the body ‘happy hormones’ such<br />
as dopamine, serotonin, oxytocin<br />
and endorphins.<br />
Many thanks for your<br />
questions and especially your<br />
interest in Chair Ping and<br />
spreading the word about it.<br />
27
ACCOMMODATION & OUTREACH<br />
AN AB COLLARD ORIGINAL FOR<br />
MARGARET DOODY HOUSE<br />
Residents and staff at our Margaret Doody Respite House have been delighting in a beautiful<br />
new painting, which was recently donated by <strong>MSWA</strong> Client and regular respite resident,<br />
Kim Graham.<br />
Kim hails from Kondinin and says<br />
he used to play footy with Ashley<br />
Collard (aka Ab Collard, NAIDOC<br />
Indigenous artist of the year 2013).<br />
Kim explains, “I asked Ashley to<br />
paint something for <strong>MSWA</strong>. Then<br />
I bought it off him and donated it.<br />
The words in the outer circle are the<br />
Aboriginal seasons.”<br />
Kim says it was a means of showing<br />
his appreciation to the team at<br />
Margaret Doody House.<br />
It’s not the first time Kim has given<br />
back to <strong>MSWA</strong>. “Years ago, I raised<br />
money for <strong>MSWA</strong> by seeing how<br />
far my gopher would go on one<br />
charge. I charged people $5 a guess.<br />
Personally, I guessed it would last<br />
around 11 kilometres.<br />
“I left Kondinin at 7.30am, travelled<br />
25km to Kulin, 25km back to<br />
Kondinin, and then circled around<br />
Kondinin 11 times! The battery finally<br />
ran out at 50.9km. We couldn’t<br />
believe it, no one had guessed<br />
<strong>MSWA</strong> Dreaming, Ab and Kelly Collard, <strong>2021</strong>, acrylic on canvas<br />
anywhere near it! Fortunately, it artwork, “To me, it is an appreciation<br />
conked out right outside the pub, of the quality service we endeavour<br />
so everyone went in to the hotel, to provide to each of our Clients.<br />
where they put on free food and In particular, I like the concept<br />
alcohol. I remember we raised and title of the artwork being<br />
$6,000 for <strong>MSWA</strong>.”<br />
<strong>MSWA</strong> Dreaming.”<br />
Manager of Margaret Doody House,<br />
<strong>MSWA</strong> would like to thank<br />
Alimul Tasin, says of their new<br />
Kim for his years of support.<br />
EXPRESSIONS OF INTEREST: OT GROUPS<br />
The Occupational Therapy team is excited to be recommencing our group sessions following a hiatus<br />
since the beginning of the pandemic. We are currently taking expressions of interest for anyone who is<br />
interested in attending the following group sessions:<br />
/ ‘Occupational Therapy and You’<br />
/ Assistive technology solutions<br />
/ Fatigue management<br />
/ Cognition strategies<br />
If you would like more information with regard to the groups, please email your interest to<br />
ot.referrals@mswa.org.au OR contact us on 9365 4854.<br />
28
OCCUPATIONAL THERAPY<br />
INCLUSION FOR ALL<br />
“Medicine adds days to life, occupational therapy adds life to days” - Madeleine Horton,<br />
National OT Morning Team, OT Week 2019<br />
Monday, 25 October marked<br />
Occupational Therapy (OT)<br />
Week where we came together<br />
to celebrate the profession of<br />
Occupational Therapy and promote<br />
the many ways OTs help all people<br />
of all abilities to reach their potential.<br />
This year’s theme was participation,<br />
inclusion and independence,<br />
putting a spotlight on the role that<br />
OTs play in supporting people to do<br />
activities that they find meaningful.<br />
Occupational Therapists at <strong>MSWA</strong><br />
are passionate about helping<br />
our Clients reach their potential<br />
through their participation within<br />
the community. Whether it is<br />
getting out of bed, continuing your<br />
hobby or interests, or just going<br />
to the shops or to the beach – we<br />
are always journeying with you<br />
to empower you to reach your<br />
goals and full potential. We do this<br />
through assessments, navigation<br />
of funding, provision of equipment,<br />
and assistive technology and<br />
education around strategies and<br />
skill development. It is our hope that<br />
through our work with you, we can<br />
continue to promote independence<br />
in your life and increase your<br />
meaningful participation within the<br />
community.<br />
Ros Harman’s article in the last<br />
<strong>Bulletin</strong> about imagining a world<br />
that was designed for people with<br />
disability resonated with those of us<br />
in the OT team. OTs are privileged<br />
to be able to work with Clients to<br />
advocate for change within the<br />
community and to continually<br />
promote participation, inclusion<br />
and independence within our<br />
communities.<br />
While we continually work<br />
towards that goal as a community,<br />
there are several initiatives and<br />
organisations which seek to bridge<br />
the gap between disability and the<br />
community to enable higher levels<br />
of access into community life. These<br />
are some of them:<br />
COMPANION CARD<br />
The Companion Card is a national<br />
scheme that enables eligible people<br />
with lifelong disability to participate<br />
at venues and activities without<br />
incurring the cost of a second ticket<br />
for their companion for participating<br />
affiliate organisations. These can<br />
include concerts, sporting events,<br />
movies, and performing arts. Learn<br />
more about the Companion Card at<br />
wacompanioncard.org.au<br />
CHANGING PLACES<br />
‘Changing Places, Transforming<br />
Lives’ is the theme of this<br />
organisation. They aim to provide<br />
suitable facilities for people who<br />
cannot use standard accessible<br />
toilets and go above and beyond<br />
to provide toilets that have ceiling<br />
hoists, additional circulation space,<br />
privacy screens and adult sized<br />
change tables to meet the needs<br />
of people with complex disabilities<br />
and their carers. To access these<br />
toilets and for their locations,<br />
an MLAK key can be applied for<br />
through changingplaces.org.au.<br />
DISABILITY GATEWAY<br />
Disability Gateway is a new<br />
government initiative which is<br />
designed to help people with<br />
disability, their families and carers<br />
find information and connect<br />
them to services and supports<br />
that they need in Australia. It has<br />
a website, disabilitygateway.gov.au,<br />
a phone line (1800 643 787) and<br />
a Facebook page and covers all<br />
areas of life including: Income and<br />
Finance, Employment, Aids and<br />
Equipment, Housing, Transport,<br />
Health and Wellbeing, Everyday<br />
Living, Education, Leisure, and<br />
Legal Rights.<br />
CRYSTAL CHAN<br />
<strong>MSWA</strong> OCCUPATIONAL<br />
THERAPY MANAGER<br />
29
ACCOMMODATION & OUTREACH<br />
OUTREACH HAPPENINGS: ROCKINGHAM<br />
After having featured both Beechboro and Wilson Outreaches in <strong>Bulletin</strong> this year, this edition<br />
will tell you all about Rockingham Outreach, formerly known as ‘Southside’.<br />
The longevity of the group goes<br />
back well over 20 years. The group<br />
began meeting at Lotteries House<br />
in Rockingham and was staffed<br />
by volunteers. It was an extremely<br />
active group of men and women<br />
driven by the late Barry Wakelam<br />
and his wife Jan. Both Jan and Barry<br />
were part of Southside into their<br />
eighties and it was a huge part of<br />
their lives.<br />
Southside’s home after Lotteries<br />
House was Seabrooke Avenue in<br />
Rockingham. In 2010, I became a<br />
part of this group and have many<br />
happy memories of the following<br />
four years at Seabrooke Avenue.<br />
One of the most treasured days was<br />
when a young <strong>MSWA</strong> Ambassador,<br />
Josh Kennedy, came to visit. There<br />
was a sea of blue and yellow<br />
throughout the house and the hype<br />
was incredible at having a West<br />
Coast Eagles player in our midst!<br />
To this day, the group has some<br />
very staunch Eagles supporters in<br />
attendance. By 2014, another venue<br />
was sourced, as the Friday group<br />
had grown so much that it was no<br />
longer practical.<br />
The new premises became – and<br />
remain at – 31 Council Avenue in<br />
Rockingham. The days of opening<br />
have expanded and currently we run<br />
three Outreach groups per week.<br />
Clients can access physiotherapy<br />
and other allied health services<br />
whilst also attending Outreach.<br />
On a Tuesday, ten very busy ladies<br />
attend. They love doing craft, with<br />
many of their clever creations<br />
decorating the Outreach room.<br />
The ladies really enjoy the social<br />
interaction with their peers and<br />
often say this is what keeps them<br />
so positive. This group particularly<br />
enjoys going to Respite at <strong>MSWA</strong><br />
Treendale Gardens together and<br />
they have become a force to be<br />
reckoned with!<br />
The beginning of this year saw a<br />
men’s Outreach group start on a<br />
Wednesday, which has become<br />
very popular. All attendees are as<br />
enthusiastic as each other and are<br />
able to share their experiences,<br />
which often isn’t easy for them.<br />
They have become a very close-knit<br />
group.<br />
Friday remains the busiest day of<br />
the week at Rockingham Outreach.<br />
Many Clients still attend who were<br />
there in the early days at Seabrooke<br />
Avenue. Ron Farnham, one of<br />
the ‘founding members’, will this<br />
month be celebrating his 80th<br />
birthday. Any excuse for a party as<br />
the saying goes and I have it on<br />
good authority that Ron’s birthday<br />
will be no exception.<br />
Peta McCormack is the Rockingham<br />
Outreach Coordinator, with support<br />
from Care Support Workers Lynne<br />
Fitzgerald, Carmen Archibald and<br />
Lisa Rudyk. Rosemary Hall is the<br />
Kitchen Supervisor and together<br />
the team provide Clients with<br />
activities each day, as well as a<br />
delicious two course lunch. Monthly<br />
programs are set up and the aim<br />
of Outreach is for Clients to feel at<br />
home and have a happy and fun<br />
environment to gather with one<br />
another. This is very evident when I<br />
visit Rockingham and is a credit to<br />
the staff above.<br />
As always, Outreach staff are<br />
extremely thankful for the many<br />
volunteers who spend their time<br />
helping with activities, particularly<br />
in the kitchen. Thank you to Bryan,<br />
Faye and Jill who are an intricate<br />
part of the team on their respective<br />
days.<br />
If you are reading this and would like<br />
to find out more information about<br />
how you could become part of an<br />
Outreach group at Rockingham<br />
I can be reached on 9365 4830 or<br />
0409 167 380. Alternatively, email<br />
nicola.ryan@mswa.org.au<br />
NICOLA RYAN<br />
SENIOR OUTREACH COORDINATOR<br />
A NEW ROWING MACHINE FOR <strong>MSWA</strong> WILSON<br />
We could have rowed to North America in the time it’s taken for the new rowing<br />
machine to arrive at <strong>MSWA</strong> Wilson! When our old rower broke in January, we ordered a<br />
replacement, but due to the surge in people purchasing home exercising equipment<br />
during lockdown, it was on backorder for months and only arrived in October.<br />
It’s great to see Clients back on the machine.<br />
A heartfelt thank you to <strong>MSWA</strong> Client Frank Montgomery, who generously donated<br />
$1,000 towards the new rower, pictured here putting it through its paces!<br />
30
OUTREACH CHRISTMAS CLOSURE DATES<br />
Outreach Centre Last date for attendance Re-opening<br />
Albany 17 December <strong>2021</strong> 14 January 2022<br />
Beechboro 17 December <strong>2021</strong> 10 January 2022<br />
Bunbury 15 December <strong>2021</strong> 12 January 2022<br />
Rockingham 17 December <strong>2021</strong> 11 January 2022<br />
Wilson 16 December <strong>2021</strong> 10 January 2022<br />
Margaret Doody Respite House will be closed for refurbishment from<br />
Wednesday 22 December <strong>2021</strong> to Tuesday 1 February 2022.<br />
31
WHATEVER YOUR NEURO,<br />
WHATEVER YOUR NEEDS.<br />
<strong>MSWA</strong>.ORG.AU